Confused about the title of this post? Well, it's the sound of me heaving a huge sigh of relief, after holding my breath for the last week. Yes, folks, it's good news: I am officially cancer-free.
It may have been apparent from my last blog that we were worried about the hole in my neck. Not just us, though: the medical professionals were sufficiently concerned that they arranged a CT scan, and frowned a lot when examining me. When Charlie the registrar shook his head and said to me, "it looks suspicious" and "healthy skin doesn't behave like that", what I was hearing was, "you're going to die".
Well, I'm not going to die, at least for a while yet. The scan has confirmed that there is no cancer in my mouth or chest. Great news. I've been cautious about saying this, but I'm finally coming to the view that maybe everything's going to be alright.
So what's the latest on the hole in my chin? On the basis that every silver lining has a cloud, all is not completely well there. The old wound has indeed opened up, and it goes all the way through from the underside of my chin into my mouth. There's no infection, or anything nasty there, fortunately. The short term implication of this is that I've been prescribed some drugs to dry up my saliva, as the wound needs to be dry in order to heal. The real sting in the tail is that I'm nil-by-mouth for another two weeks at least: i.e. until 29 December; i.e. no eating or drinking over Christmas. Bang goes my dream of a glass of Champagne on Christmas Day. Oh well, maybe New Years Eve.
But it would be churlish of me to go into a sulk over an inconvenience for a couple of weeks, when the main news is so overwhelmingly positive. It will be a Happy Christmas, because I'm still here, and - relatively - healthy.
Here are ten songs about my feeling of relief.
1. Everything's Gonna Be Alright - PP Arnold
2. I Think It's Gonna Work Out Fine - Ike & Tina Turner
3. Walking Back To Happiness - Helen Shapiro
4. Feelin' Good - Nina Simone
5. Everybody's Gonna Be Happy - The Kinks
6. Everything Will Be Alright - The Killers
7. Happiness Is Here - Tobi Lark
8. I'm So Thankful - The Ikettes
9. Get Happy - Judy Garland
10. When You're Smiling - Louis Armstrong
Sweet relief!
RP
Wednesday 15 December 2010
Tuesday 7 December 2010
Fixing a Hole
Curses!
Just when things were going so well, a setback. We hope it's not a major problem, but a setback nonetheless.
Do you remember that post-surgery, I had a fistula in my neck, which wouldn't heal, and was the main reason why I was prevented from eating and drinking, until the medics were happy that it was fully mended? Well, yesterday evening, I was happily chomping on my mashed banana and custard, when I noticed some moisture on my neck. A quick check in the mirror revealed that, fully three months after the wound had repaired itself, it had opened up again!
This morning, the hole had grown, and was attractively oozing a yellow pus, not entirely dissimilar in appearance to my unfinished custard. So, off to the familiar surroundings of Barts for Catherine and myself today, where we were seen by the registrar Charlie, who decided to do a biopsy and put me through a CT scan. We're all hoping it's nothing nasty, but we won't get the results until next Wednesday. We will, of course, let you know the news as soon as we receive it, but please keep fingers and toes crossed.
In the meantime, I'm back to nil-by-mouth, in order to avoid the risk of infection. Just when I was getting the taste for yogurt!
Here are ten songs about holes.
1. Holes - Mercury Rev
2. Wholly Holy - Marvin Gaye
3. My Bucket's Got A Hole In It - Hank Williams
4. Falling In A Deep Hole - Emmylou Harris
5. Hole Wide World - Wreckless Eric
6. The Bottomless Hole - The Handsome Family
7. Hole Lotta Love - Led Zeppelin
8. Fixing A Hole - The Beatles
9. Hole In My Shoe - Traffic
10. Hi Hole Silver Lining - Jeff Beck
RP
Just when things were going so well, a setback. We hope it's not a major problem, but a setback nonetheless.
Do you remember that post-surgery, I had a fistula in my neck, which wouldn't heal, and was the main reason why I was prevented from eating and drinking, until the medics were happy that it was fully mended? Well, yesterday evening, I was happily chomping on my mashed banana and custard, when I noticed some moisture on my neck. A quick check in the mirror revealed that, fully three months after the wound had repaired itself, it had opened up again!
This morning, the hole had grown, and was attractively oozing a yellow pus, not entirely dissimilar in appearance to my unfinished custard. So, off to the familiar surroundings of Barts for Catherine and myself today, where we were seen by the registrar Charlie, who decided to do a biopsy and put me through a CT scan. We're all hoping it's nothing nasty, but we won't get the results until next Wednesday. We will, of course, let you know the news as soon as we receive it, but please keep fingers and toes crossed.
In the meantime, I'm back to nil-by-mouth, in order to avoid the risk of infection. Just when I was getting the taste for yogurt!
Here are ten songs about holes.
1. Holes - Mercury Rev
2. Wholly Holy - Marvin Gaye
3. My Bucket's Got A Hole In It - Hank Williams
4. Falling In A Deep Hole - Emmylou Harris
5. Hole Wide World - Wreckless Eric
6. The Bottomless Hole - The Handsome Family
7. Hole Lotta Love - Led Zeppelin
8. Fixing A Hole - The Beatles
9. Hole In My Shoe - Traffic
10. Hi Hole Silver Lining - Jeff Beck
RP
Saturday 4 December 2010
The Perfect Match
Hello Again
Just a quick blog today, because it's Saturday morning and I've got a busy day ahead of me. I'm in a fever of excitement and a bit of apprehension, as I'm going to my first football match of the season: Chelsea vs Everton at Stamford Bridge.
Yes, I'm being allowed out on my own for the trip down to Parsons Green, where I will meet my good friends Barney and Richard in the excellent White Horse pub, for a couple of pre-match pints. That is to say that they will have a couple of pre-match pints. I may take a chance on half a shandy.
Although I've been experimenting at home with various alcoholic libations, I'm just not up to it yet. I'm not sure whether this is because my mouth is still raw from the radiotherapy, or that my taste buds have changed, with the result that I just don't like it. What a confession, and how the mighty have fallen!
Anyway, after an afternoon of sitting in the cold watching my team being thoroughly humiliated, expending my energies shouting incoherent abuse at the ref, players and rival supporters, I expect to be pretty exhausted, but I'm looking forward to it.
Of course, the practicalities for a day out when one is fed by tube can get a bit complicated. I can't just get a bag of chips on the way to the match, and I can hardly inject my feed into my stomach in the middle of the pub. Ever resourceful, Catherine has been in touch with the hotel at Stamford Bridge, and arranged for them to have a room for me to feed myself after the game, at no cost. What nice people.
She Who Must Be Obeyed is herself off on her own excursion today, with her girlie friends, for a pampering, drinking and who knows what else overnighter at a hotel in Essex. Lucy is going to something called the Jingle Bell Ball at the O2, so this evening I'll be on my own with Molly the dog. Still, it gives me the opportunity to enjoy Everton's glorious victory on Match of the Day in peace.
On another matter, I sort of returned to work this week. I've commenced the limited working from home as prescribed by the doctor. I've reinstated my access to the office network, to find 2,500 emails waiting for me. As there was an out-of-office message returned to any senders, and most people who worked with me regularly knew about my situation, there was a high proportion of Spam, I've still spent my first couple of days back wading through that lot.
Here are ten songs which could be about football.
1. Can I Kick It? - A Tribe Called Quest
2. God's Footballer - Billy Bragg
3. All I Want For Christmas Is A Dukla Prague Away Kit - Half Man Half Biscuit
4. I Don't Want To Go To Chelsea - Elvis Costello & The Attractions
5. Kickabout - Teenage Fanclub
6. Park Life - Blur
7. You Win Again - Hank Williams
8. Keep On Movin' - Soul II Soul
9. Born To Lose - Ray Charles
10. The Beautiful Game - Acoustic Alchemy
Just a quick blog today, because it's Saturday morning and I've got a busy day ahead of me. I'm in a fever of excitement and a bit of apprehension, as I'm going to my first football match of the season: Chelsea vs Everton at Stamford Bridge.
Yes, I'm being allowed out on my own for the trip down to Parsons Green, where I will meet my good friends Barney and Richard in the excellent White Horse pub, for a couple of pre-match pints. That is to say that they will have a couple of pre-match pints. I may take a chance on half a shandy.
Although I've been experimenting at home with various alcoholic libations, I'm just not up to it yet. I'm not sure whether this is because my mouth is still raw from the radiotherapy, or that my taste buds have changed, with the result that I just don't like it. What a confession, and how the mighty have fallen!
Anyway, after an afternoon of sitting in the cold watching my team being thoroughly humiliated, expending my energies shouting incoherent abuse at the ref, players and rival supporters, I expect to be pretty exhausted, but I'm looking forward to it.
Of course, the practicalities for a day out when one is fed by tube can get a bit complicated. I can't just get a bag of chips on the way to the match, and I can hardly inject my feed into my stomach in the middle of the pub. Ever resourceful, Catherine has been in touch with the hotel at Stamford Bridge, and arranged for them to have a room for me to feed myself after the game, at no cost. What nice people.
She Who Must Be Obeyed is herself off on her own excursion today, with her girlie friends, for a pampering, drinking and who knows what else overnighter at a hotel in Essex. Lucy is going to something called the Jingle Bell Ball at the O2, so this evening I'll be on my own with Molly the dog. Still, it gives me the opportunity to enjoy Everton's glorious victory on Match of the Day in peace.
On another matter, I sort of returned to work this week. I've commenced the limited working from home as prescribed by the doctor. I've reinstated my access to the office network, to find 2,500 emails waiting for me. As there was an out-of-office message returned to any senders, and most people who worked with me regularly knew about my situation, there was a high proportion of Spam, I've still spent my first couple of days back wading through that lot.
Here are ten songs which could be about football.
1. Can I Kick It? - A Tribe Called Quest
2. God's Footballer - Billy Bragg
3. All I Want For Christmas Is A Dukla Prague Away Kit - Half Man Half Biscuit
4. I Don't Want To Go To Chelsea - Elvis Costello & The Attractions
5. Kickabout - Teenage Fanclub
6. Park Life - Blur
7. You Win Again - Hank Williams
8. Keep On Movin' - Soul II Soul
9. Born To Lose - Ray Charles
10. The Beautiful Game - Acoustic Alchemy
Wednesday 24 November 2010
And So This Is Trismus
Good Morning
One of the consolations of my ordeal is that it affords the opportunity of widening my vocabulary, as I learn new medical terms. The word for today is Trismus, which means the inability to open the mouth, or - in technical terms - limited mandibular motion.
So, to add to all my other ailments, I am suffering from Trismus. It probably originated with the surgery, and would have been exacerbated by radiotherapy. In order to ease the condition, Speech and Language Therapist Nancy has obtained an instrument of torture called a TheraBite, which is a plastic contraption designed to widen the mouth opening.
The TheraByte resembles a Dymo tapewriter in appearance, but works on a simple principle of stretching the jaw muscles, so that eventually with repeated use the patent's natural jaw opening increases to a satisfactory extent. My mouth currently opens less than 2cm, and the objective is to get a gap of over 3.5cm.
Still, regardless of the Trismus, my recovery continues, and I'm feeling progressively stronger. You will recall that my main worry has been about my long-term ability to eat and drink normally, and so I've decided to up the ante as far as my consumption of food and drink is concerned.
Until very recently, I've been limiting myself to cautious sips of water and not much more, but I was alarmed at my previous meeting with Nancy, when she indicated that I may be limited to soft foods in perpetuity. I wasn't prepared to accept a life of eating nothing but mush, so consulted others.
You may remember that a nice chap called Ben, who went through similar surgery and treatment to myself a couple of years ago, had made contact when I was in hospital, and he has continued to offer moral support since then. He had such difficulty rehabilitating his ability to swallow that he travelled to the States for treatment at the Swallowing Research Laboratory at the University of Florida. He kept a video diary of his time there, and put it on YouTube: I found it quite inspiring. I've also been in touch with Doctor Michael Crary, who attended to Ben, and he has given me some useful advice. I'm hoping that I won't have to travel to Florida to put things right, but if that's what it takes, that's what I'll do.
In the meantime, the advice from Ben and Dr Crary (and, in fairness, my own Speech and Language Therapist, Nancy) is to practice swallowing as much as possible. With regard to eating, I've therefore decided to up the ante, and be less Gillian McKeith and more Linford Christie. In the last few days, I have devoured yogurts, jellies, chocolate mousses, Creme Caramels, and even a banana mashed up in custard. No kangaroo penises yet, but it's early days.
I've also ventured so far as to try a few tastes of alcoholic drinks. All of the wines I've tried have been too acidic for my radiation-impaired palate, but I was able to cope with a small glass of beer. I'm still intending to have that glass of Champagne on Christmas day!
Things generally continue to progress, although not as rapidly as I'd like. I'm feeling much stronger, and my spirits have improved enormously. The doctor has said that I can dip my toe back in the water of work, albeit only from home to begin with. So everything is good!
Here are 10 songs about food.
1. Life Is A Minestrone - 10CC
2. Eggs And Coffee - Tom Waits
3. Jambalaya - Hank Williams
4. Breakfast In Bed - Sheila Hylton
5. Green Onions - Booker T & The MGs
6. Memphis Soul Stew - King Curtis
7. Mummy I Don't Like My Meat - The Goodies
8. Breakfast - Alan Hull
9. Cat Food - King Crimson
10. Meat Is Murder - The Smiths
Mouth wide shut.
RP
One of the consolations of my ordeal is that it affords the opportunity of widening my vocabulary, as I learn new medical terms. The word for today is Trismus, which means the inability to open the mouth, or - in technical terms - limited mandibular motion.
So, to add to all my other ailments, I am suffering from Trismus. It probably originated with the surgery, and would have been exacerbated by radiotherapy. In order to ease the condition, Speech and Language Therapist Nancy has obtained an instrument of torture called a TheraBite, which is a plastic contraption designed to widen the mouth opening.
The TheraByte resembles a Dymo tapewriter in appearance, but works on a simple principle of stretching the jaw muscles, so that eventually with repeated use the patent's natural jaw opening increases to a satisfactory extent. My mouth currently opens less than 2cm, and the objective is to get a gap of over 3.5cm.
Still, regardless of the Trismus, my recovery continues, and I'm feeling progressively stronger. You will recall that my main worry has been about my long-term ability to eat and drink normally, and so I've decided to up the ante as far as my consumption of food and drink is concerned.
Until very recently, I've been limiting myself to cautious sips of water and not much more, but I was alarmed at my previous meeting with Nancy, when she indicated that I may be limited to soft foods in perpetuity. I wasn't prepared to accept a life of eating nothing but mush, so consulted others.
You may remember that a nice chap called Ben, who went through similar surgery and treatment to myself a couple of years ago, had made contact when I was in hospital, and he has continued to offer moral support since then. He had such difficulty rehabilitating his ability to swallow that he travelled to the States for treatment at the Swallowing Research Laboratory at the University of Florida. He kept a video diary of his time there, and put it on YouTube: I found it quite inspiring. I've also been in touch with Doctor Michael Crary, who attended to Ben, and he has given me some useful advice. I'm hoping that I won't have to travel to Florida to put things right, but if that's what it takes, that's what I'll do.
In the meantime, the advice from Ben and Dr Crary (and, in fairness, my own Speech and Language Therapist, Nancy) is to practice swallowing as much as possible. With regard to eating, I've therefore decided to up the ante, and be less Gillian McKeith and more Linford Christie. In the last few days, I have devoured yogurts, jellies, chocolate mousses, Creme Caramels, and even a banana mashed up in custard. No kangaroo penises yet, but it's early days.
I've also ventured so far as to try a few tastes of alcoholic drinks. All of the wines I've tried have been too acidic for my radiation-impaired palate, but I was able to cope with a small glass of beer. I'm still intending to have that glass of Champagne on Christmas day!
Things generally continue to progress, although not as rapidly as I'd like. I'm feeling much stronger, and my spirits have improved enormously. The doctor has said that I can dip my toe back in the water of work, albeit only from home to begin with. So everything is good!
Here are 10 songs about food.
1. Life Is A Minestrone - 10CC
2. Eggs And Coffee - Tom Waits
3. Jambalaya - Hank Williams
4. Breakfast In Bed - Sheila Hylton
5. Green Onions - Booker T & The MGs
6. Memphis Soul Stew - King Curtis
7. Mummy I Don't Like My Meat - The Goodies
8. Breakfast - Alan Hull
9. Cat Food - King Crimson
10. Meat Is Murder - The Smiths
Mouth wide shut.
RP
Monday 8 November 2010
Getting Better
Greetings, comrades.
As you'll have gathered from the title of this piece, it really does feel like I'm getting better, day by day. That's not to say that everything in the garden is rosy, but I don't feel constantly nauseous, I'm beginning to get some energy back, and even the horrible, horrible saliva secretions aren't quite the problem that they were.
I still have profound deformities in the chest and neck area, which others assure me are less noticeable than they were, but I'm not so sure. For those of you who have made disparaging comments about my torso in the past: believe me, now that my pectoralis major resides in my neck and cheek, it looks positively massive! The area it has vacated looks more puny than ever, although decorated with a highly impressive scar.
My speech impediment is as bad as ever, and speaking more than a few words is a pretty unpleasant experience. For all that the bad stuff going on inside my mouth is not as bad as it was, I can't go anywhere without a box of tissues, and I've got to learn how to swallow all over again.
Still, it's progress of a sort, and my spirit has improved accordingly: you may have gathered that I've gone through some fairly black moods. Ours is now a house of optimism, although we know that there's a lot of work to do before I'm back to normal. This has been reinforced by reassurances from the medical profession. We visited the Ear Nose & Throat clinic yesterday, and they all professed themselves delighted with my progress, particularly as I was so run down last time they saw me. I'm told that my outrageous neck muscle will atrophy in time, and the speech will significantly improve, although I may never completely recover my former dulcet tones.
The biggest challenge, though, is going to be learning to eat and drink again. Although I had been able to sip fluids, and even managed to eat custard and soup before I went through the radiotherapy, I'm afraid that I'm back at square one. Nancy, my favourite Speech & Language Therapist, is patiently taking me through all this, and has promised to have me drinking Champagne by Christmas, even if Christmas lunch itself may need to be liquidised.
From my position, this is the single most important issue in my long term recovery. As you probably know, a big part of my social life revolves around the dinner table, and it's no secret that I like a glass of wine. The thought of being fed by tube for the rest of my life is not something I want to really contemplate. I'm determined to restore my ability to eat and drink, but it will take a long time and a lot of work.
In spite of all this, I'm hoping to start a phased return to work next month, provided that my progress continues. I suspect that I might start getting a bit stir crazy if I don't get back soon, although I am receiving advice from various quarters not to do too much too soon. I think after six months returning to work might be a bit daunting, particularly given current financial challenges in the public sector, but it's got to be done.
In the meantime, it's onwards and upwards, and here are 10 upward & onward songs.
1. Move On Up - Curtis Mayfield
2. Higher & Higher - Jackie Wilson
3. Up Up And Away - The Fifth Dimension
4. Flyin' High (In The Friendly Sky) - Marvin Gaye
5. Higher Than The Sun - Primal Scream
6. Up With People - Lambchop
7. I Want To Take You Higher - Sly & The Family Stone
8. Ain't No Mountain High Enough - Diana Ross
9. Because I Got High - Afro Man
10. No Matter How High I Get - Wilton Felder & Bobby Womack
(Yes, I know I could have included Up Where We Belong and The Only Way Is Up, but I don't like them.)
Learning to smile again!
RP
As you'll have gathered from the title of this piece, it really does feel like I'm getting better, day by day. That's not to say that everything in the garden is rosy, but I don't feel constantly nauseous, I'm beginning to get some energy back, and even the horrible, horrible saliva secretions aren't quite the problem that they were.
I still have profound deformities in the chest and neck area, which others assure me are less noticeable than they were, but I'm not so sure. For those of you who have made disparaging comments about my torso in the past: believe me, now that my pectoralis major resides in my neck and cheek, it looks positively massive! The area it has vacated looks more puny than ever, although decorated with a highly impressive scar.
My speech impediment is as bad as ever, and speaking more than a few words is a pretty unpleasant experience. For all that the bad stuff going on inside my mouth is not as bad as it was, I can't go anywhere without a box of tissues, and I've got to learn how to swallow all over again.
Still, it's progress of a sort, and my spirit has improved accordingly: you may have gathered that I've gone through some fairly black moods. Ours is now a house of optimism, although we know that there's a lot of work to do before I'm back to normal. This has been reinforced by reassurances from the medical profession. We visited the Ear Nose & Throat clinic yesterday, and they all professed themselves delighted with my progress, particularly as I was so run down last time they saw me. I'm told that my outrageous neck muscle will atrophy in time, and the speech will significantly improve, although I may never completely recover my former dulcet tones.
The biggest challenge, though, is going to be learning to eat and drink again. Although I had been able to sip fluids, and even managed to eat custard and soup before I went through the radiotherapy, I'm afraid that I'm back at square one. Nancy, my favourite Speech & Language Therapist, is patiently taking me through all this, and has promised to have me drinking Champagne by Christmas, even if Christmas lunch itself may need to be liquidised.
From my position, this is the single most important issue in my long term recovery. As you probably know, a big part of my social life revolves around the dinner table, and it's no secret that I like a glass of wine. The thought of being fed by tube for the rest of my life is not something I want to really contemplate. I'm determined to restore my ability to eat and drink, but it will take a long time and a lot of work.
In spite of all this, I'm hoping to start a phased return to work next month, provided that my progress continues. I suspect that I might start getting a bit stir crazy if I don't get back soon, although I am receiving advice from various quarters not to do too much too soon. I think after six months returning to work might be a bit daunting, particularly given current financial challenges in the public sector, but it's got to be done.
In the meantime, it's onwards and upwards, and here are 10 upward & onward songs.
1. Move On Up - Curtis Mayfield
2. Higher & Higher - Jackie Wilson
3. Up Up And Away - The Fifth Dimension
4. Flyin' High (In The Friendly Sky) - Marvin Gaye
5. Higher Than The Sun - Primal Scream
6. Up With People - Lambchop
7. I Want To Take You Higher - Sly & The Family Stone
8. Ain't No Mountain High Enough - Diana Ross
9. Because I Got High - Afro Man
10. No Matter How High I Get - Wilton Felder & Bobby Womack
(Yes, I know I could have included Up Where We Belong and The Only Way Is Up, but I don't like them.)
Learning to smile again!
RP
Friday 29 October 2010
Hello Friends - it's me again, following an extended stay away from your computer screens. Once again, I've received various emails questioning my absence and encouraging me to post a progress report.
There are a couple of reasons why I haven't reported anything for several weeks: the first is that in my zombie-like state, I simply haven't had the energy; and the second is that I've had so little to report. A daily update along the lines of "feeling lousy; even worse than yesterday" is enough to have you all running for the hills, and seeking a less depressing web site.
Well, as evidenced by the very fact that I'm sitting here composing a blog, I think I must be gradually getting better. Forgive me if I seem a little uncertain, but there are bad days and, well, worse days.
The last 2-3 weeks of treatment were the worst I can ever remember feeling, and there was no improvement in the first week post-treatment. Then about a week ago, I started feeling a little bit brighter, so we assumed that it would be a simple matter of steady progress, but no such luck, I'm afraid. If I have got any better over the last seven days, the recovery has been so limited as to be unnoticeable. They say that it can be three weeks after the end of treatment before you start feeling better, so surely things must start looking up soon.
It's very difficult to describe the symptoms of the treatment: maybe just a general malaise, but the worst you've ever experienced. It's one of those feelings that you can only understand if you've lived through it. My good friend Alex, who has experienced it, describes it as "the horrors", which is just about spot on.
As ever, Catherine has been fantastic: patient and caring, I don't know what I would do without her. She's been gently bullying me to do my swallowing exercises, and has resisted the temptation to shout at me when I've childishly refused. She keeps a resolutely cheerful view on things, which is just as well, as more thsn one person in the house with my black mood would make things even more unbearable.
Sorry to be downbeat again. I hope to be back soon, with a more positive message.
Keep smiling.
Rx
There are a couple of reasons why I haven't reported anything for several weeks: the first is that in my zombie-like state, I simply haven't had the energy; and the second is that I've had so little to report. A daily update along the lines of "feeling lousy; even worse than yesterday" is enough to have you all running for the hills, and seeking a less depressing web site.
Well, as evidenced by the very fact that I'm sitting here composing a blog, I think I must be gradually getting better. Forgive me if I seem a little uncertain, but there are bad days and, well, worse days.
The last 2-3 weeks of treatment were the worst I can ever remember feeling, and there was no improvement in the first week post-treatment. Then about a week ago, I started feeling a little bit brighter, so we assumed that it would be a simple matter of steady progress, but no such luck, I'm afraid. If I have got any better over the last seven days, the recovery has been so limited as to be unnoticeable. They say that it can be three weeks after the end of treatment before you start feeling better, so surely things must start looking up soon.
It's very difficult to describe the symptoms of the treatment: maybe just a general malaise, but the worst you've ever experienced. It's one of those feelings that you can only understand if you've lived through it. My good friend Alex, who has experienced it, describes it as "the horrors", which is just about spot on.
As ever, Catherine has been fantastic: patient and caring, I don't know what I would do without her. She's been gently bullying me to do my swallowing exercises, and has resisted the temptation to shout at me when I've childishly refused. She keeps a resolutely cheerful view on things, which is just as well, as more thsn one person in the house with my black mood would make things even more unbearable.
Sorry to be downbeat again. I hope to be back soon, with a more positive message.
Keep smiling.
Rx
Wednesday 20 October 2010
Still here
Just a quick one - Rick had his last chemotherapy session last Wednesday (13th Oct) and the last radiotherapy on Friday (15th Oct). Although we haven't got the daily trek to St Bart's, Rick is feeling pretty rough - anti-sickness drugs are not quite as successful as last time and the whole mucus/gloopy saliva situation isn't helping matters. All this is to be expected, the doctors did say he will be feeling probably the worst he has felt so far for the next 2-3 weeks (they are not wrong there) and then things should gradually start to pick up.
So bear with us, hopefully it won't be too long before you get a much more entertaining blog!
Catherine x
So bear with us, hopefully it won't be too long before you get a much more entertaining blog!
Catherine x
Sunday 3 October 2010
From The Bottom Of My Heart
Hi All
Just a short post this time, to let you know that I'm still here, and muddling through.
My previous blog was pretty downhearted, as I was going through some pretty tough times with the treatment. Well, it continues to be a struggle, and I'm not saying that the last week has been easy, but I've got through it, and I've only got two weeks more radiotherapy and one session of chemo left. I knew it was going to be hard, but I'm going to get through this.
The main reason I wanted to update the blog, though, was to say thanks. Whenever I've confessed to feeling down, you - my friends - have gathered round and offered heartfelt words of support, and these have kept me going. The last blog provoked a number of responses, either directly as comments on the blog site, or through texts and emails sent separately. Some made me weep - I'm a bit of a crybaby at the moment - others made me laugh, but they all gave me strength. So thanks.
Here are 10 songs of thanks.
1. Thank You For Being A Friend - Andrew Gold
2. I'll Always Be Grateful - A House
3. I Thank You - Sam & Dave
4. I'm So Thankful - The Ikettes
5. Thank You Baby For Loving Me - Soul Brothers Six
6. Thank You For Letting Me Be Myself Again - Maceo & The King's Men
7. Be Thankful For What You've Got - William DeVaughan
8. Thank You Girl - John Hiatt
9. Thank You For The Dream - Lamont Dozier
10. Thanks For The Joy - Ruthie Foster
RP
Just a short post this time, to let you know that I'm still here, and muddling through.
My previous blog was pretty downhearted, as I was going through some pretty tough times with the treatment. Well, it continues to be a struggle, and I'm not saying that the last week has been easy, but I've got through it, and I've only got two weeks more radiotherapy and one session of chemo left. I knew it was going to be hard, but I'm going to get through this.
The main reason I wanted to update the blog, though, was to say thanks. Whenever I've confessed to feeling down, you - my friends - have gathered round and offered heartfelt words of support, and these have kept me going. The last blog provoked a number of responses, either directly as comments on the blog site, or through texts and emails sent separately. Some made me weep - I'm a bit of a crybaby at the moment - others made me laugh, but they all gave me strength. So thanks.
Here are 10 songs of thanks.
1. Thank You For Being A Friend - Andrew Gold
2. I'll Always Be Grateful - A House
3. I Thank You - Sam & Dave
4. I'm So Thankful - The Ikettes
5. Thank You Baby For Loving Me - Soul Brothers Six
6. Thank You For Letting Me Be Myself Again - Maceo & The King's Men
7. Be Thankful For What You've Got - William DeVaughan
8. Thank You Girl - John Hiatt
9. Thank You For The Dream - Lamont Dozier
10. Thanks For The Joy - Ruthie Foster
RP
Monday 27 September 2010
Horrible, Horrible, Horrible
Okay, so I'm over halfway through the radiotherapy and two thirds through the chemo. I should be punching the air, celebrating such progress, with the home run in sight. So why do I feel so lousy?
Well, although the drugs do work - to a certain extent - chemo still takes it out of you. This time I was sent away with the most powerful anti-sickness drugs, and only puked twice: the second time being just as I was entering Bart's Hospital on Thursday. They also provided a veritable plethora of supplementary medications, including some steroids, which carried the warning that they may cause suicidal thoughts. And I wondered why I'd been feeling so low all weekend!
It's now Monday morning, and I've emerged from my pit feeling very slightly less miserable, trying to take stock of my current condition, and assess what I can reasonably expect to endure for the next three weeks.
The gloopy saliva - sorry to keep going on about it - remains a major annoyance. It gets thicker and less manageable by the day. Swallowing it causes retching, so I end up constantly dribbling into a flannel, which is very attractive for all observers.
I am tired all the time: the days, just a few weeks ago, when I could could take Molly the dog for a walk three times around the park are a distant memory. I managed one circuit on Saturday, and had to come back home to sit down and recover.
In spite of the radiation pinkness, burning on the outside of my skin is not currently too bad - possibly because I have been piling on the cream - but the inside of my mouth has started to become very sore. This is exacerbated by a nice case of oral thrush on my tongue. My voice has deteriorated from a barely distinguishable honk to a completely incomprehensible whine.
(Incidentally, on the subject of thrush: when I was younger, I thought it was a sexually transmitted disease, so there always seems something vaguely shameful about contracting this particular fungal infection. When it's oral thrush, I am reminded of the old joke, of the man being told by his doctor that he has caught a venereal disease. "I must have caught it from a toilet seat", he says. "Well you must have eaten it," replies the doctor, "you've got it in the gums.")
Furthermore, I'm almost totally deaf in my right ear, and the hearing in my left ear is declining. And I seem to have added an extra petulant side to my character, which manifests itself in me shouting at loved ones, or throwing things around in a tantrum. Boy, am I fun to be around just now!
All in all, I've been feeling pretty sorry for myself, and fearing that things are going to get worse before they get better. Catherine has caught a very nasty cold, but I'm afraid that I'm reserving all my sympathy for myself just now.
Sorry this all seems to have been a bit of a whinge. I'm conscious that the more dramatic parts of my treatment - the operations, cutting, slicing, intensive care, etc. - are over, and this phase is relatively mundane. Please believe me, for all the routine that goes with the radiotherapy, it's no less unpleasant.
Back to the subject of thrush, here are ten songs about birds.
1. My Songbird - Jesse Winchester
2. Three Little Birds - Bob Marley & The Wailers
3. Little Sparrows - The Handsome Family
4. Songbird - Anais Mitchell
5. Little Bird - Eels
6. Beautiful Bluebird - Neil Young
7. When Doves Cry - Prince
8. Bird On The Wire - Leonard Cohen
9. Blue Valley Songbird - Dolly Parton
10. The Crow On The Cradle - Jackson Browne
Is anybody there?
RP
Well, although the drugs do work - to a certain extent - chemo still takes it out of you. This time I was sent away with the most powerful anti-sickness drugs, and only puked twice: the second time being just as I was entering Bart's Hospital on Thursday. They also provided a veritable plethora of supplementary medications, including some steroids, which carried the warning that they may cause suicidal thoughts. And I wondered why I'd been feeling so low all weekend!
It's now Monday morning, and I've emerged from my pit feeling very slightly less miserable, trying to take stock of my current condition, and assess what I can reasonably expect to endure for the next three weeks.
The gloopy saliva - sorry to keep going on about it - remains a major annoyance. It gets thicker and less manageable by the day. Swallowing it causes retching, so I end up constantly dribbling into a flannel, which is very attractive for all observers.
I am tired all the time: the days, just a few weeks ago, when I could could take Molly the dog for a walk three times around the park are a distant memory. I managed one circuit on Saturday, and had to come back home to sit down and recover.
In spite of the radiation pinkness, burning on the outside of my skin is not currently too bad - possibly because I have been piling on the cream - but the inside of my mouth has started to become very sore. This is exacerbated by a nice case of oral thrush on my tongue. My voice has deteriorated from a barely distinguishable honk to a completely incomprehensible whine.
(Incidentally, on the subject of thrush: when I was younger, I thought it was a sexually transmitted disease, so there always seems something vaguely shameful about contracting this particular fungal infection. When it's oral thrush, I am reminded of the old joke, of the man being told by his doctor that he has caught a venereal disease. "I must have caught it from a toilet seat", he says. "Well you must have eaten it," replies the doctor, "you've got it in the gums.")
Furthermore, I'm almost totally deaf in my right ear, and the hearing in my left ear is declining. And I seem to have added an extra petulant side to my character, which manifests itself in me shouting at loved ones, or throwing things around in a tantrum. Boy, am I fun to be around just now!
All in all, I've been feeling pretty sorry for myself, and fearing that things are going to get worse before they get better. Catherine has caught a very nasty cold, but I'm afraid that I'm reserving all my sympathy for myself just now.
Sorry this all seems to have been a bit of a whinge. I'm conscious that the more dramatic parts of my treatment - the operations, cutting, slicing, intensive care, etc. - are over, and this phase is relatively mundane. Please believe me, for all the routine that goes with the radiotherapy, it's no less unpleasant.
Back to the subject of thrush, here are ten songs about birds.
1. My Songbird - Jesse Winchester
2. Three Little Birds - Bob Marley & The Wailers
3. Little Sparrows - The Handsome Family
4. Songbird - Anais Mitchell
5. Little Bird - Eels
6. Beautiful Bluebird - Neil Young
7. When Doves Cry - Prince
8. Bird On The Wire - Leonard Cohen
9. Blue Valley Songbird - Dolly Parton
10. The Crow On The Cradle - Jackson Browne
Is anybody there?
RP
Sunday 26 September 2010
Quick chemo update
Just a quick update - Rick, although feeling pretty rough, has coped with the chemo much better than last time. The super-duper anti-sickness drugs have worked for the most part, and Rick has managed to avoid another re-admittance to Bart's for re-hydration. He has spent most of the time after chemo in bed, getting up for our daily outings to the radiotherapy suite in Bart's, but hopefully the symptoms will abate over the next few days and he will be able to do the blog himself.
Catherine
Catherine
Tuesday 21 September 2010
Chemistry Class
Hello Boys and Girls
Just a quick post today, as I go for my second blast of chemo tomorrow, so may be feeling like death for the next few days. I've been promised the extra-strength, super-duper anti-emetic, but who knows what reaction it'll have. Last time I was readmitted to hospital, which nobody wants, so fingers crossed.
I've now done 15 radiotherapy sessions, out of a total of 33, so nearly halfway. today's mantra at the radiotherapy clinic was "It'll only get worse from now on". For example, when I complained of a sore throat when swallowing, I was told, "it'll only get worse from now on"; similarly, the burning of the skin around my face, the nasty, nasty gloopy saliva, and all the other side-effects, which I won't bore you with now.
Today is Catherine's birthday, and normally we would mark it with a nice meal, washed down with some fine wine. Under the circumstances, I'm afraid that wasn't possible this year, and she's spent most of the day ferrying me around various medical appointments. To make matters worse, the bracelet I had ordered didn't arrive on time, so as a present from me she had to make do with a photo of said item of jewellery. In my defence, I'd like to claim that I've had a lot on my mind, but that's no excuse.
Actually, she did have a birthday meal at the weekend, cooked as a joint effort between Lucy and Emma. The menu was a starter of roast vegetable and mozarella stack; main course was fillet steak in a whiskey jus; and dessert of Iles Flotant. With such culinary delights from the girls, I shall soon be rendered completely obsolete.
Finally, and in lieu of the normal list of songs, let me tell you about the best CD I've bought for ages. It's a compilation called "Dark Was The Night", which is part of the "Red Hot" series of albums, the proceeds of which go towards AIDS charities. This particular one is a double CD, drawn together by the nice people at 4AD. It was released in 2009, but didn't come to my attention until browsing Amazon recently. It includes some great stuff, and my highlights are "Sleepless" by The Decemberists, "I Was Young When I Left Home" by Antony Hegarty and Bryce Dessner, "Lua" by Conor Oberst and Gillian Welch, and "Inspiration Information" by the peerless Sharon Jones and The Dap Kings. There are one or two duffers - notably The Kronos Quartet's attempt to recreate the delta blues of Robert Johnson, which is as bad as it sounds, but overall it's highly recommended, and only about nine quid. Buy this album.
End of music review. Wish me luck.
R
Just a quick post today, as I go for my second blast of chemo tomorrow, so may be feeling like death for the next few days. I've been promised the extra-strength, super-duper anti-emetic, but who knows what reaction it'll have. Last time I was readmitted to hospital, which nobody wants, so fingers crossed.
I've now done 15 radiotherapy sessions, out of a total of 33, so nearly halfway. today's mantra at the radiotherapy clinic was "It'll only get worse from now on". For example, when I complained of a sore throat when swallowing, I was told, "it'll only get worse from now on"; similarly, the burning of the skin around my face, the nasty, nasty gloopy saliva, and all the other side-effects, which I won't bore you with now.
Today is Catherine's birthday, and normally we would mark it with a nice meal, washed down with some fine wine. Under the circumstances, I'm afraid that wasn't possible this year, and she's spent most of the day ferrying me around various medical appointments. To make matters worse, the bracelet I had ordered didn't arrive on time, so as a present from me she had to make do with a photo of said item of jewellery. In my defence, I'd like to claim that I've had a lot on my mind, but that's no excuse.
Actually, she did have a birthday meal at the weekend, cooked as a joint effort between Lucy and Emma. The menu was a starter of roast vegetable and mozarella stack; main course was fillet steak in a whiskey jus; and dessert of Iles Flotant. With such culinary delights from the girls, I shall soon be rendered completely obsolete.
Finally, and in lieu of the normal list of songs, let me tell you about the best CD I've bought for ages. It's a compilation called "Dark Was The Night", which is part of the "Red Hot" series of albums, the proceeds of which go towards AIDS charities. This particular one is a double CD, drawn together by the nice people at 4AD. It was released in 2009, but didn't come to my attention until browsing Amazon recently. It includes some great stuff, and my highlights are "Sleepless" by The Decemberists, "I Was Young When I Left Home" by Antony Hegarty and Bryce Dessner, "Lua" by Conor Oberst and Gillian Welch, and "Inspiration Information" by the peerless Sharon Jones and The Dap Kings. There are one or two duffers - notably The Kronos Quartet's attempt to recreate the delta blues of Robert Johnson, which is as bad as it sounds, but overall it's highly recommended, and only about nine quid. Buy this album.
End of music review. Wish me luck.
R
Tuesday 14 September 2010
Spitting In The Wind
Hello Friends
The radiotherapy continues, and the treatment itself is still not too unpleasant, although I'm certainly starting to enjoy the side-effects.
To be positive, I've now done 10 sessions, which is a smidgen over 30%. Obviously, I'd be happier to be sitting here saying it's 30% to go, but with a fair wind, and all pulling together, we just might get through this.
So, those side effects. Most noticeable, and most annoying and embarrassing, is the saliva. Basically, everyone has two sets of saliva glands: one is responsible for "thin" saliva, and the other pumps out the thick gloopy stuff. Under normal circumstances, both sets of gob combine in the mouth, for a liquid of ideal consistency,which we swallow and expel without really noticing for most of the time.
When being treated with radiotherapy, the gland which makes the thin saliva goes on holiday, so you're stuck with footballers' spit, and lots of it. Swallowing this stuff is like drinking sick, and so produces the inevitable gagging response. I think I've managed to get a total of about 6 hours sleep in the last two nights, as I keep waking up retching on the muck in my mouth. I'm told that by the end of the course of treatment, it will have taken on the consistency of chewing gum, which obviously I'm looking forward to.
Not a lot to do except grin and bear it, I'm afraid. I'm instructed to keep my mouth as clean as possible, using the nebuliser and mouth-suction frequently, and possibly sucking ice chips from time to time, to lightn the consistency, but basically I've got to put up with it. Could be worse.
Of other symptoms, I have checked with Dr Sibtain: deafness in my right ear? "That'll be the radiotherapy"; breathlessness and fatigue? "That'll be the radiotherapy"; numbness across the whole of the right side of my face? "That'll be the radiotherapy"; a powerful erection, which drains the blood from the rest of my body and lasts for six hours? "That'll be the radiotherapy".
Actually that last one was a lie, just checking you're still awake.
I haven't yet suffered the burning of the skin, or the sore throat, but they'll be along soon, no doubt. I'm also dreading my next session of chemo, which is next Wednesday, considering how sick I was last time.
I've finally been seen by a physio, who agreed that I am indeed "as stiff as a very stiff thing" (stop sniggering at the back), and I need a programme of physiotherapy. This was just an assessment meeting, but she did me the honour of prodding and poking me in painful places, just to confirm that I'm not malingering. Next appointment is next Tuesday, when the series of torture will begin in earnest.
Changing the subject completely, let me tell you about the little indulgence that Catherine and I have allowed oursleves. As we've had such a crap summer, we've decided to treat ourselves to a Brennan, which is a CD-player with a hard disc that stores up to 5,000 CDs. We've justified it on the basis that it's a joint birthday present. Catherine's birthday is next week, but mine is in January! It's due to be delivered in the last week of September, and I can't wait to get my hands on it. Check it out at www.brennan.co.uk.
So, back to the topic of physiotherapy:
1. Exercise - Clem Snide
2. Lean On Me - Bill Withers
3. Touch Me In The Morning - Diana Ross
4. Angel Fingers - Wizzard
5. Release The Pressure - Leftfield
6. Closer to The Bone - Kris Kristofferson
7. Tighten Up - Archie Bell & The Drells
8. Loosen Up - E.T. White
9. See Me, Feel Me - The Who
10. Hands Off My Baby - Mary Wells
Stay loose!
RP
The radiotherapy continues, and the treatment itself is still not too unpleasant, although I'm certainly starting to enjoy the side-effects.
To be positive, I've now done 10 sessions, which is a smidgen over 30%. Obviously, I'd be happier to be sitting here saying it's 30% to go, but with a fair wind, and all pulling together, we just might get through this.
So, those side effects. Most noticeable, and most annoying and embarrassing, is the saliva. Basically, everyone has two sets of saliva glands: one is responsible for "thin" saliva, and the other pumps out the thick gloopy stuff. Under normal circumstances, both sets of gob combine in the mouth, for a liquid of ideal consistency,which we swallow and expel without really noticing for most of the time.
When being treated with radiotherapy, the gland which makes the thin saliva goes on holiday, so you're stuck with footballers' spit, and lots of it. Swallowing this stuff is like drinking sick, and so produces the inevitable gagging response. I think I've managed to get a total of about 6 hours sleep in the last two nights, as I keep waking up retching on the muck in my mouth. I'm told that by the end of the course of treatment, it will have taken on the consistency of chewing gum, which obviously I'm looking forward to.
Not a lot to do except grin and bear it, I'm afraid. I'm instructed to keep my mouth as clean as possible, using the nebuliser and mouth-suction frequently, and possibly sucking ice chips from time to time, to lightn the consistency, but basically I've got to put up with it. Could be worse.
Of other symptoms, I have checked with Dr Sibtain: deafness in my right ear? "That'll be the radiotherapy"; breathlessness and fatigue? "That'll be the radiotherapy"; numbness across the whole of the right side of my face? "That'll be the radiotherapy"; a powerful erection, which drains the blood from the rest of my body and lasts for six hours? "That'll be the radiotherapy".
Actually that last one was a lie, just checking you're still awake.
I haven't yet suffered the burning of the skin, or the sore throat, but they'll be along soon, no doubt. I'm also dreading my next session of chemo, which is next Wednesday, considering how sick I was last time.
I've finally been seen by a physio, who agreed that I am indeed "as stiff as a very stiff thing" (stop sniggering at the back), and I need a programme of physiotherapy. This was just an assessment meeting, but she did me the honour of prodding and poking me in painful places, just to confirm that I'm not malingering. Next appointment is next Tuesday, when the series of torture will begin in earnest.
Changing the subject completely, let me tell you about the little indulgence that Catherine and I have allowed oursleves. As we've had such a crap summer, we've decided to treat ourselves to a Brennan, which is a CD-player with a hard disc that stores up to 5,000 CDs. We've justified it on the basis that it's a joint birthday present. Catherine's birthday is next week, but mine is in January! It's due to be delivered in the last week of September, and I can't wait to get my hands on it. Check it out at www.brennan.co.uk.
So, back to the topic of physiotherapy:
1. Exercise - Clem Snide
2. Lean On Me - Bill Withers
3. Touch Me In The Morning - Diana Ross
4. Angel Fingers - Wizzard
5. Release The Pressure - Leftfield
6. Closer to The Bone - Kris Kristofferson
7. Tighten Up - Archie Bell & The Drells
8. Loosen Up - E.T. White
9. See Me, Feel Me - The Who
10. Hands Off My Baby - Mary Wells
Stay loose!
RP
Monday 6 September 2010
Radio Radio
So was it the radiotherapy of the chemotherapy, or a bit of both? Dr Sibtain assures me it was the chemo which knocked me for six last Thursday, and threw me into a vomiting torpor from which I only emerged yesterday, almost a week later. Dr Sib says they'll up the anti-emetic medication for the next two chemotherapy sessions, which should reduce the side-effects, although it probably won't eradicate them entirely.
I ended up being admitted to Barts on Friday night, due to the dehydration, but I'm on the mend now, and haven't missed a radiotherapy session, which they take a very dim view of. So that's 6 down, 27 to go!
The radiotherapy sessions themselves are mildly uncomfortable, but certainly nothing too arduous. You lie alone and absolutely still on a cold slab in a cold room, wearing the mesh mask, while machines whir and clank and gurgle around you. They play music while you're treated, and there's a calming photo of autumn leaves to admire on the ceiling. Only last Friday - in the depths of my sickness - have I had to interrupt a session. The music generally consists of nondescript pop stuff, but on the day I was really sick, they played a never-ending loop of some oriental version of These Foolish Things, which seemed to be slowed down, like a single being played on 33rpm. I don't know whether they thought this was restful. If so, they were wrong. The treatment takes place 5 days a week, for six and a half weeks.
The radiotherapy symptoms kick in with full effect after 2-3 weeks. They include burning of the skin, drying of the mouth, and extreme tiredness. I've already got a bit of the fatigue, and my mouth has developed a horrible gloopy saliva, impossible to swallow, and nausea-inducing, but I just have to grin and bear this. At the moment it's not that bad.
Catherine has ordered me to write down at least one positive thought every day. On Monday, I managed "Everton didn't lose at the weekend" (they didn't play. Other than that, my best has been "Roll on Halloween!". Any suggestions for positive thinking - serious or jocular - most welcome.
Top ten radiotherapy songs:
1. Radio Song - REM
2. I'm So Tired - The Beatles
3. Cool Waves - Spisitualized
4. Starting To Hurt - Ryan Adams
5. Peaceful, The World Lays Me Down - Noah & The Whales
6. Shut Your Eyes - Snow Patrol
7. I Think I've Had Enough - Jayhawks
8. Tired Skin - Southside Johnny & The Asbury Jukes
9. Everyday - Buddy Holly
10. In A Lonely Place - New Order
Come on you Blues! (Everton vs Man Utd, Saturday)
RP
I ended up being admitted to Barts on Friday night, due to the dehydration, but I'm on the mend now, and haven't missed a radiotherapy session, which they take a very dim view of. So that's 6 down, 27 to go!
The radiotherapy sessions themselves are mildly uncomfortable, but certainly nothing too arduous. You lie alone and absolutely still on a cold slab in a cold room, wearing the mesh mask, while machines whir and clank and gurgle around you. They play music while you're treated, and there's a calming photo of autumn leaves to admire on the ceiling. Only last Friday - in the depths of my sickness - have I had to interrupt a session. The music generally consists of nondescript pop stuff, but on the day I was really sick, they played a never-ending loop of some oriental version of These Foolish Things, which seemed to be slowed down, like a single being played on 33rpm. I don't know whether they thought this was restful. If so, they were wrong. The treatment takes place 5 days a week, for six and a half weeks.
The radiotherapy symptoms kick in with full effect after 2-3 weeks. They include burning of the skin, drying of the mouth, and extreme tiredness. I've already got a bit of the fatigue, and my mouth has developed a horrible gloopy saliva, impossible to swallow, and nausea-inducing, but I just have to grin and bear this. At the moment it's not that bad.
Catherine has ordered me to write down at least one positive thought every day. On Monday, I managed "Everton didn't lose at the weekend" (they didn't play. Other than that, my best has been "Roll on Halloween!". Any suggestions for positive thinking - serious or jocular - most welcome.
Top ten radiotherapy songs:
1. Radio Song - REM
2. I'm So Tired - The Beatles
3. Cool Waves - Spisitualized
4. Starting To Hurt - Ryan Adams
5. Peaceful, The World Lays Me Down - Noah & The Whales
6. Shut Your Eyes - Snow Patrol
7. I Think I've Had Enough - Jayhawks
8. Tired Skin - Southside Johnny & The Asbury Jukes
9. Everyday - Buddy Holly
10. In A Lonely Place - New Order
Come on you Blues! (Everton vs Man Utd, Saturday)
RP
Sunday 5 September 2010
Blog publishing error...
Dear all
I published Rick's draft blog but it has appeared before my last entry, so for those of you who are interested you can find it under "My Drug Buddy" dated 31st Aug 2010, although it does refer to events on 1st September.
Rick is out of hospital - just an overnight stay this time - and feeling a bit more human now.
Catherine
I published Rick's draft blog but it has appeared before my last entry, so for those of you who are interested you can find it under "My Drug Buddy" dated 31st Aug 2010, although it does refer to events on 1st September.
Rick is out of hospital - just an overnight stay this time - and feeling a bit more human now.
Catherine
Thursday 2 September 2010
Phase 2
Just a quick update - Rick started Chemo and Radiotherapy yesterday, all ok up till about 3pm today when the side effects have started. He is feeling very sick and miserable which is absolutely to be expected, but fingers crossed, should be getting less over the next few days.
I know there is another, far more entertaining, blog in the pipeline but it's still in draft form so you will have to put up with basic facts and no song list - sorry!
I'll now go and minister to my patient.
Catherine x
I know there is another, far more entertaining, blog in the pipeline but it's still in draft form so you will have to put up with basic facts and no song list - sorry!
I'll now go and minister to my patient.
Catherine x
Tuesday 31 August 2010
My Drug Buddy
Felicitations, pop pickers
I noticed my adversary trying to catch my eye as I arrived back in the Chemotherapy suite after my inaugural radiotherapy session. My would-be Cancer Buddy sitting opposite was eye-ing me and readying himself for conversation, but I am a seasoned miserable old git, and was having none of it. With one deft movement, I was onto my lounger, nose in my book, avoiding all attempts at bonhomie. I don't want any Cancer Buddies.
I could tell immediately that he was the type, actually inoffensive enough, who needs mindless conversation like most of us need oxygen. When he had exhausted the hospital staff's conversational patience, he turned his persistent glare back on us. My eyes remained fixed on the Lance Armstrong biography, but Catherine weakened, showed a flicker of humanity, and was captured.
The inevitable comparison of treatments followed: Cancer Buddy impressively reeled off all his cancer stats, and declared "chemo is better than radiotherapy". I was about to break into a chant of "We all agree, chemo is better than radio", but contented myself by honking to Catherine, as sotto voce as I could, "perhaps he's a doctor".
Unsurprisingly, Cancer Buddy proved himself to be an expert on most things, from nutrition to roofing ("don't use porous roof tiles", he advised Catherine"). Fortunately, I resisted the temptation to engage him in a conversation about current affairs, for fear of being humiliated. He did ask whether we liked the treatment at Barts. Oh yes, it's been lovely, we'll definitely be coming back, and I'm going to recommend it to all my friends.
As you can tell from the above, the chemo / radiotherapy started yesterday. It was a long day of mainly sitting around in the Chemo suite, having various fluids pumped intravenously into my body, with a brief intermission for the radiotherapy session.
I was wheeled down from the Chemo suite to Radiotherapy in the afternoon. Whereas in Chemo, we'd been in the communal area, a suite of 8 loungers occupied by mostly old, mostly miserable patients (is that me?), when I got down to Radiotherapy, we were isolated, as I am still a carrier of MRSA. Even after I'd used the toilet, it was immediately declared out-of-bounds until it could be deep-cleaned. I really don't know why I was deemed persona non grata downstairs, yet welcomed with the masses upstairs. You work it out. (Note: when I unwisely used the horrible expression "go figure" in a previous post, my older bro John rightly took me to task. I promise to avoid such vulgar Americanisms i future.)
Anyway, radiotherapy.
I've had my wrists slapped for my lethargy in not providing more frequent bulletins on my progress, and have been particularly admonished for leaving you all hanging in suspense after a very depressed post a couple of weeks ago.
As I start chemo and radiotherapy tomorrow, I thought I'd better put pen to paper (or finger to keyboard, to be more accurate) and let you know what's happening. I'll try to keep it short: you're all busy people and it's nearly my bed time.
OK, so what's been happening? We've attended a couple of meetings with the charming Nancy, Speech Therapist at Whipps Cross. Some of you may recall that our experience with the Speech Therapy people at Barts was a bit unsatisfactory, so we were quite pleased to be referred to Whipps Cross for this part of the treatment.
Nancy has given me a set of tongue exercises, and told me to stand in front of a mirror enunciating various sounds (ooh, ee, ahhh, oh: the sort of sounds that one associates with sexual ecstasy. I wouldn't know). She's also keeping a close eye on my drinking. I need to remind you that this does not mean she follows me from pub to pub, keeping a count of alcoholic units consumed.
It seems that the butchery that has been committed on my mouth has left me vulnerable to liquids going down my windpipe and into my lungs, rather than its normal course down to the stomach. The result of this would be pneumonia, so we have to tread - or sip - carefully. Nancy has given me permission to be a little more adventurous with my drinks, so I can now progress onto smoothies, soups, custards and yogurts.
As far as booze is concerned, I do enjoy a very small glass of white wine, which currently has to be diluted with an equal amount of water. I've also found a low alcohol cider in Sainsbury's which I quite like, but I'm drinking it extremely slowly. It's going to be a long time before I will be the life and soul of the party, I'm afraid.
Today's meeting with Nancy ended with a potentially distressing, but ultimately amusing, incident. She was examining the wreckage that is my mouth, and noticed a lump. She brought in a senior colleague for her opinion, and she authoritatively announced that it looked like an infection, which needed to be seen immediately by an Ear Nose & Throat specialist.
From there we were escorted to the ENT clinic, and jumped the queue to be examined by the Registrar. He poked around my open mouth with a large metal implement, finally flicking a large, gooey, brown blob of gunk onto my sleeve. The infectious growth was nothing more serious than a particularly revolting accumulation of phlegm!
The other main thing to report is related to nutrition. Although I have been obediently consuming my 2,700 calories of yummy feed through my stomach tube every day, I haven't put any weight on, and may even have lost a couple of pounds. As I am now lighter than any time since my early 20s, there was some concern about this: it seems that weight loss and radiotherapy is not a happy combination. The nutrition specialists have therefore given me a food supplement, which is apparently pure fat. Just 90ml a day will give me another 400 calories, so it's to be hoped that I'll soon be piling on the pounds.
This is the blog that was unfinished on Thursday - unfortunately after 24hrs of sickness Rick was re-admitted to Barts hospital for some intravenous re-hydration. He did manage to complete his 3rd session of radiotherapy before going up to the ward - only another 30 to go! Sickness after chemo is very common, the only concern was that if he got too dehydrated it could possibly damage his kidneys which was why he was kept in. No doubt in his next blog Rick will tell you all about his latest stay.
That's all for now,
Catherine
I noticed my adversary trying to catch my eye as I arrived back in the Chemotherapy suite after my inaugural radiotherapy session. My would-be Cancer Buddy sitting opposite was eye-ing me and readying himself for conversation, but I am a seasoned miserable old git, and was having none of it. With one deft movement, I was onto my lounger, nose in my book, avoiding all attempts at bonhomie. I don't want any Cancer Buddies.
I could tell immediately that he was the type, actually inoffensive enough, who needs mindless conversation like most of us need oxygen. When he had exhausted the hospital staff's conversational patience, he turned his persistent glare back on us. My eyes remained fixed on the Lance Armstrong biography, but Catherine weakened, showed a flicker of humanity, and was captured.
The inevitable comparison of treatments followed: Cancer Buddy impressively reeled off all his cancer stats, and declared "chemo is better than radiotherapy". I was about to break into a chant of "We all agree, chemo is better than radio", but contented myself by honking to Catherine, as sotto voce as I could, "perhaps he's a doctor".
Unsurprisingly, Cancer Buddy proved himself to be an expert on most things, from nutrition to roofing ("don't use porous roof tiles", he advised Catherine"). Fortunately, I resisted the temptation to engage him in a conversation about current affairs, for fear of being humiliated. He did ask whether we liked the treatment at Barts. Oh yes, it's been lovely, we'll definitely be coming back, and I'm going to recommend it to all my friends.
As you can tell from the above, the chemo / radiotherapy started yesterday. It was a long day of mainly sitting around in the Chemo suite, having various fluids pumped intravenously into my body, with a brief intermission for the radiotherapy session.
I was wheeled down from the Chemo suite to Radiotherapy in the afternoon. Whereas in Chemo, we'd been in the communal area, a suite of 8 loungers occupied by mostly old, mostly miserable patients (is that me?), when I got down to Radiotherapy, we were isolated, as I am still a carrier of MRSA. Even after I'd used the toilet, it was immediately declared out-of-bounds until it could be deep-cleaned. I really don't know why I was deemed persona non grata downstairs, yet welcomed with the masses upstairs. You work it out. (Note: when I unwisely used the horrible expression "go figure" in a previous post, my older bro John rightly took me to task. I promise to avoid such vulgar Americanisms i future.)
Anyway, radiotherapy.
I've had my wrists slapped for my lethargy in not providing more frequent bulletins on my progress, and have been particularly admonished for leaving you all hanging in suspense after a very depressed post a couple of weeks ago.
As I start chemo and radiotherapy tomorrow, I thought I'd better put pen to paper (or finger to keyboard, to be more accurate) and let you know what's happening. I'll try to keep it short: you're all busy people and it's nearly my bed time.
OK, so what's been happening? We've attended a couple of meetings with the charming Nancy, Speech Therapist at Whipps Cross. Some of you may recall that our experience with the Speech Therapy people at Barts was a bit unsatisfactory, so we were quite pleased to be referred to Whipps Cross for this part of the treatment.
Nancy has given me a set of tongue exercises, and told me to stand in front of a mirror enunciating various sounds (ooh, ee, ahhh, oh: the sort of sounds that one associates with sexual ecstasy. I wouldn't know). She's also keeping a close eye on my drinking. I need to remind you that this does not mean she follows me from pub to pub, keeping a count of alcoholic units consumed.
It seems that the butchery that has been committed on my mouth has left me vulnerable to liquids going down my windpipe and into my lungs, rather than its normal course down to the stomach. The result of this would be pneumonia, so we have to tread - or sip - carefully. Nancy has given me permission to be a little more adventurous with my drinks, so I can now progress onto smoothies, soups, custards and yogurts.
As far as booze is concerned, I do enjoy a very small glass of white wine, which currently has to be diluted with an equal amount of water. I've also found a low alcohol cider in Sainsbury's which I quite like, but I'm drinking it extremely slowly. It's going to be a long time before I will be the life and soul of the party, I'm afraid.
Today's meeting with Nancy ended with a potentially distressing, but ultimately amusing, incident. She was examining the wreckage that is my mouth, and noticed a lump. She brought in a senior colleague for her opinion, and she authoritatively announced that it looked like an infection, which needed to be seen immediately by an Ear Nose & Throat specialist.
From there we were escorted to the ENT clinic, and jumped the queue to be examined by the Registrar. He poked around my open mouth with a large metal implement, finally flicking a large, gooey, brown blob of gunk onto my sleeve. The infectious growth was nothing more serious than a particularly revolting accumulation of phlegm!
The other main thing to report is related to nutrition. Although I have been obediently consuming my 2,700 calories of yummy feed through my stomach tube every day, I haven't put any weight on, and may even have lost a couple of pounds. As I am now lighter than any time since my early 20s, there was some concern about this: it seems that weight loss and radiotherapy is not a happy combination. The nutrition specialists have therefore given me a food supplement, which is apparently pure fat. Just 90ml a day will give me another 400 calories, so it's to be hoped that I'll soon be piling on the pounds.
This is the blog that was unfinished on Thursday - unfortunately after 24hrs of sickness Rick was re-admitted to Barts hospital for some intravenous re-hydration. He did manage to complete his 3rd session of radiotherapy before going up to the ward - only another 30 to go! Sickness after chemo is very common, the only concern was that if he got too dehydrated it could possibly damage his kidneys which was why he was kept in. No doubt in his next blog Rick will tell you all about his latest stay.
That's all for now,
Catherine
Wednesday 25 August 2010
Life Is Sweet
Good evening, fellow travellers on the choppy seas of life.
Can I start by thanking those of you who have offered sympathy, words of encouragement and gentle rebukes for my last, rather downbeat post. One of the great things for me about the blog is that when I'm feeling down, I can tell the world about it, and your responses remind me that I've got a bunch of friends who care about me. And I mean that most sincerely, folks.
And sorry it's been so long since I shared my thoughts with you. There's been a lot going on: most of it, I'm glad to say, very positive.
Anyway, let's get the big stuff out of the way. The cancer has not spread to my lung. That's right: the dark cloud which caused the despondency in my previous post has been blown away. Although the experts had tried to reassure us that I wasn't carrying any of the symptoms of lung cancer, such as extreme breathlessness and coughing blood, they had taken it seriously enough to give me a scan and send some fluid off for tests. Inevitably, in view of my run of bad luck, Catherine and I couldn't help fearing the worst.
Well, we got a call at about 9 o'clock on Tuesday evening from Jo, the Ear Nose & Throat registrar at Barts, to confirm that the tests came back free of cancer cells. Nothing to worry about, apparently. They'll keep an eye on the fluid in the lung, but are hoping it will sort itself out.
Also - guess what? I'm drinking again! Now, many of you may think that this is little cause for celebration, given my fondness for all things alcoholic, and the possible impact on my recovery, but I don't mean that I'm down the pub every night knocking back pints. I've had my first glass of water for over two months, and it was delicious! At the ENT clinic on Wednesday, it was noted that the obstinate wound in my neck appeared to have healed. A quick swallow test, involving the consumption of a glass of blue-dyed water, demonstated that the neck was watertight, and I was able to swallow, albeit without my former gusto.
On returning home, I treated myself to a bottle of mineral water, for which I'd been longing for weeks. I also helped myself to a drop of the Muscadet Sur Lie which Catherine had so conveniently opened. I found the taste a bit overpowering, so I had to dilute it with quite a lot of water, and it took all evening to drink one glass, but it felt good!
Before I become too gushing with positive thoughts, let me tell you about one of the negative things we've discovered. Don't worry: it's not a major problem, so shouldn't dampen the mood too much.
Among the many drugs prescribed for my recovery, I have something called Fentanyl, which comes in the form of a patch, stuck to my back. Each patch releases its wonders over a period of 72 hours, after which it is discarded, and a new patch applied. On one occasion when I was in hospital, the nurse forgot to change the patch on the appointed day. This coincided with me suffering weird physical symptoms, including the shakes, feverish sensations (although my temperature was constant), loose bowels and irrtability.
I hadn't made the connection, but Catherine googled Fentanyl, and discovered that it is over 80 times more potent than morphine, and produces wicked withdrawal symptoms. Since my return home, I'v been trying to reduce my use of painkillers generally, but have found that failure to change my Fentanyl patch on time makes me feel quite poorly. I've suffered relatively minor symptoms, similar to those listed above, but we're convinced that it's down to the Fentanyl - or the lack of it.
This is my first experience of drug addiction, and we discussed with Jo at the ENT clinic the best way to end my dependence: a gentle weaning, or cold turkey? She felt that the former would be preferable, so we're going to try a smaller dose with my next patch change, which is due on Friday morning. If I come over all depressed in future blogs, bear in mind it just might be Fentanyl deficiency kicking in.
With things generally going so swimmingly, it will probably come as no surprise that the chemo and radiotherapy is going to proceed as planned. This means that next Wednesday I am going to endure a full day of chemo, followed by my first session of radiotherapy. Then daily radiotherapy for 6 and a half weeks, with further chemo on day 22 and right at the end. We're under no illusions: this is going to be horrible, but we're really quite buoyant about it. This treatment is a necessary evil in my journey to full heaslth, so bring it on! I may not feel quite so defiant once I get into it, but for now it's all good.
A trip to see the very impressive Dr Leung at the London Dental Institute on Tuesday gave us brief food for thought, as she examined my teeth and found that the nerves on two of them been damaged by the manubulotomy, and the jaw had still not completely fused together as well as she would have hoped. The various worthies (Dental, ENT and Radiotherapy) discussed my case, and - having briefly considered an operation to tighten my jaw and/or further tooth extractions - decided that the radiotherapy is the main priority at this stage, so we press on with that, and any repair work can wait until later.
I've also had my first meeting with the lovely Nancy, Speech Therapist at Whipps Cross Hospital, and I'm due to start my work with her tomorrow. Catherine has made it quite clear that she intends to chaperone, in case I should venture to suggest that Nancy might help me with my kissing problem (see previous blog).
Something else you might be vaguely interested in: I finally renewed my acquaintance with the kitchen this week, by cooking a scrumptious meal for Catherine and Lucy. I only have their word for it, as I was still nil by mouth, but I'm assured it was excellent. The dish was fillet steak in a Madeira jus, and the occasion to celebrate was Lucy getting an A star in her Maths GCSE, which she took a year early. I was glad to be cooking again, and of course got loads of brownie points for such a selfless gesture.
Finally, as everything in the garden currently looks rosy, today's hit parade is on a gardening / flowers theme.
1. Beware of The Flowers ('Cos I'm Sure They're Gonna Get You, Yeah) - John Otway & Wild Willy Barrett
2. Come Into The Garden, Maud - Derek B Scott (lyrics by Alfred, Lord Tennyson)
3. I'll Pick A Rose For My Rose - Marv Johnson
4. Wildwood Flower - The Carter Family
5. Thistles & Weeds - Mumford & Sons
6. (Nothing But) Flowers - Talking Heads
7. Flowers (Eurydice's Song) Anais Mitchell
8. A Good Year For The Roses - George Jones
9. Octopus's Garden - The Beatles
10. Hong Kong Garden - Siouxsie & The Banshees
Cheers!
RP
Can I start by thanking those of you who have offered sympathy, words of encouragement and gentle rebukes for my last, rather downbeat post. One of the great things for me about the blog is that when I'm feeling down, I can tell the world about it, and your responses remind me that I've got a bunch of friends who care about me. And I mean that most sincerely, folks.
And sorry it's been so long since I shared my thoughts with you. There's been a lot going on: most of it, I'm glad to say, very positive.
Anyway, let's get the big stuff out of the way. The cancer has not spread to my lung. That's right: the dark cloud which caused the despondency in my previous post has been blown away. Although the experts had tried to reassure us that I wasn't carrying any of the symptoms of lung cancer, such as extreme breathlessness and coughing blood, they had taken it seriously enough to give me a scan and send some fluid off for tests. Inevitably, in view of my run of bad luck, Catherine and I couldn't help fearing the worst.
Well, we got a call at about 9 o'clock on Tuesday evening from Jo, the Ear Nose & Throat registrar at Barts, to confirm that the tests came back free of cancer cells. Nothing to worry about, apparently. They'll keep an eye on the fluid in the lung, but are hoping it will sort itself out.
Also - guess what? I'm drinking again! Now, many of you may think that this is little cause for celebration, given my fondness for all things alcoholic, and the possible impact on my recovery, but I don't mean that I'm down the pub every night knocking back pints. I've had my first glass of water for over two months, and it was delicious! At the ENT clinic on Wednesday, it was noted that the obstinate wound in my neck appeared to have healed. A quick swallow test, involving the consumption of a glass of blue-dyed water, demonstated that the neck was watertight, and I was able to swallow, albeit without my former gusto.
On returning home, I treated myself to a bottle of mineral water, for which I'd been longing for weeks. I also helped myself to a drop of the Muscadet Sur Lie which Catherine had so conveniently opened. I found the taste a bit overpowering, so I had to dilute it with quite a lot of water, and it took all evening to drink one glass, but it felt good!
Before I become too gushing with positive thoughts, let me tell you about one of the negative things we've discovered. Don't worry: it's not a major problem, so shouldn't dampen the mood too much.
Among the many drugs prescribed for my recovery, I have something called Fentanyl, which comes in the form of a patch, stuck to my back. Each patch releases its wonders over a period of 72 hours, after which it is discarded, and a new patch applied. On one occasion when I was in hospital, the nurse forgot to change the patch on the appointed day. This coincided with me suffering weird physical symptoms, including the shakes, feverish sensations (although my temperature was constant), loose bowels and irrtability.
I hadn't made the connection, but Catherine googled Fentanyl, and discovered that it is over 80 times more potent than morphine, and produces wicked withdrawal symptoms. Since my return home, I'v been trying to reduce my use of painkillers generally, but have found that failure to change my Fentanyl patch on time makes me feel quite poorly. I've suffered relatively minor symptoms, similar to those listed above, but we're convinced that it's down to the Fentanyl - or the lack of it.
This is my first experience of drug addiction, and we discussed with Jo at the ENT clinic the best way to end my dependence: a gentle weaning, or cold turkey? She felt that the former would be preferable, so we're going to try a smaller dose with my next patch change, which is due on Friday morning. If I come over all depressed in future blogs, bear in mind it just might be Fentanyl deficiency kicking in.
With things generally going so swimmingly, it will probably come as no surprise that the chemo and radiotherapy is going to proceed as planned. This means that next Wednesday I am going to endure a full day of chemo, followed by my first session of radiotherapy. Then daily radiotherapy for 6 and a half weeks, with further chemo on day 22 and right at the end. We're under no illusions: this is going to be horrible, but we're really quite buoyant about it. This treatment is a necessary evil in my journey to full heaslth, so bring it on! I may not feel quite so defiant once I get into it, but for now it's all good.
A trip to see the very impressive Dr Leung at the London Dental Institute on Tuesday gave us brief food for thought, as she examined my teeth and found that the nerves on two of them been damaged by the manubulotomy, and the jaw had still not completely fused together as well as she would have hoped. The various worthies (Dental, ENT and Radiotherapy) discussed my case, and - having briefly considered an operation to tighten my jaw and/or further tooth extractions - decided that the radiotherapy is the main priority at this stage, so we press on with that, and any repair work can wait until later.
I've also had my first meeting with the lovely Nancy, Speech Therapist at Whipps Cross Hospital, and I'm due to start my work with her tomorrow. Catherine has made it quite clear that she intends to chaperone, in case I should venture to suggest that Nancy might help me with my kissing problem (see previous blog).
Something else you might be vaguely interested in: I finally renewed my acquaintance with the kitchen this week, by cooking a scrumptious meal for Catherine and Lucy. I only have their word for it, as I was still nil by mouth, but I'm assured it was excellent. The dish was fillet steak in a Madeira jus, and the occasion to celebrate was Lucy getting an A star in her Maths GCSE, which she took a year early. I was glad to be cooking again, and of course got loads of brownie points for such a selfless gesture.
Finally, as everything in the garden currently looks rosy, today's hit parade is on a gardening / flowers theme.
1. Beware of The Flowers ('Cos I'm Sure They're Gonna Get You, Yeah) - John Otway & Wild Willy Barrett
2. Come Into The Garden, Maud - Derek B Scott (lyrics by Alfred, Lord Tennyson)
3. I'll Pick A Rose For My Rose - Marv Johnson
4. Wildwood Flower - The Carter Family
5. Thistles & Weeds - Mumford & Sons
6. (Nothing But) Flowers - Talking Heads
7. Flowers (Eurydice's Song) Anais Mitchell
8. A Good Year For The Roses - George Jones
9. Octopus's Garden - The Beatles
10. Hong Kong Garden - Siouxsie & The Banshees
Cheers!
RP
Monday 16 August 2010
One Step Forward, One Step Back
Hello again, playmates.
A word of advice: keep away from hospitals, they're bad for your health.
Catherine and I were up bright and early yesterday for an appointment at Barts to have my radiotherapy mask constructed. The mask is a thermoplastic mould, in the shape of the patient's face, which keeps the head completely still while the treatment is administered, and ensures that the rays are directed to the right place.
To male the mask, I was asked to lay on a slab, while the nice lady applied a warm plastic sheet onto my face, then let it cool down, and peeled it off. A completely painless process.
Once the mask was completed, I moved on down the corridor for a CT scan, while wearing the mask. This was my third CT scan since this whole thing began, so I was pretty relaxed about it.
We were then asked to wait in a side room, while the staff checked that everything was in order. After a rather prolonged wait, Dr Sibtain - head honcho in the Radiotherapy Department - joined us, with the bombshell that the CT scan had shown up a shadow on my right lung. Not good.
He seemed pretty certain that it was a build up of fluid, caused by one of my many operations, and not cancer-related. However, it does need to be dealt with, and is sufficiently serious that they had considered re-admitting me as an inpatient there and then.
Instead, he stuck a needle in me and took out some of the offending fluid, which has been sent off for tests, and we will know the results in about a week. We've also been asked to go back today for another CT scan - this one specifically aimed at my lungs.
Two months ago, I had a tumour in my mouth - obviously nasty and needing treatment - but I was otherwise completely healthy. Today, I have wounds in my chin, neck and chest, which stubbornly refuse to heal; I have a deformed chest, with one nipple humorously higher than the other; my face is is severely scarred and swollen; my speech is unintelligible; I am unable to control the seemingly endless flow of saliva from my mouth; I am ridden with MRSA; and now, to top it all, I have an as yet undiagnosed lung ailment. It's not the illness that's getting me down, but the treatment.
I know I have banished negativity from this site, but I hope that you'll forgive me for feeling just a little bit sorry for myself. So today's "top ten" songs are about wallowing in self-pity.
1. Drown In My Own Tears - Ray Charles
2. I'm A Mess - Nick Lowe
3. I'm Alone In The Wilderness - The Pogues
4. The Whole Town's Laughing At Me - Teddy Pendergrass
5. 'Cause Cheap Is How I Feel - Cowboy Junkies
6. Heaven Knows I'm Miserable Now - The Smiths
7. Nobody Wants You When You're Down And Out - Bobby Womack
8. Have Mercy Someone - ZZ Hill
9. What Did I Do To Be So Black And Blue - Louis Armstrong
10. I Need A Mother - Eels
These Ain't Raindrops!
RP
A word of advice: keep away from hospitals, they're bad for your health.
Catherine and I were up bright and early yesterday for an appointment at Barts to have my radiotherapy mask constructed. The mask is a thermoplastic mould, in the shape of the patient's face, which keeps the head completely still while the treatment is administered, and ensures that the rays are directed to the right place.
To male the mask, I was asked to lay on a slab, while the nice lady applied a warm plastic sheet onto my face, then let it cool down, and peeled it off. A completely painless process.
Once the mask was completed, I moved on down the corridor for a CT scan, while wearing the mask. This was my third CT scan since this whole thing began, so I was pretty relaxed about it.
We were then asked to wait in a side room, while the staff checked that everything was in order. After a rather prolonged wait, Dr Sibtain - head honcho in the Radiotherapy Department - joined us, with the bombshell that the CT scan had shown up a shadow on my right lung. Not good.
He seemed pretty certain that it was a build up of fluid, caused by one of my many operations, and not cancer-related. However, it does need to be dealt with, and is sufficiently serious that they had considered re-admitting me as an inpatient there and then.
Instead, he stuck a needle in me and took out some of the offending fluid, which has been sent off for tests, and we will know the results in about a week. We've also been asked to go back today for another CT scan - this one specifically aimed at my lungs.
Two months ago, I had a tumour in my mouth - obviously nasty and needing treatment - but I was otherwise completely healthy. Today, I have wounds in my chin, neck and chest, which stubbornly refuse to heal; I have a deformed chest, with one nipple humorously higher than the other; my face is is severely scarred and swollen; my speech is unintelligible; I am unable to control the seemingly endless flow of saliva from my mouth; I am ridden with MRSA; and now, to top it all, I have an as yet undiagnosed lung ailment. It's not the illness that's getting me down, but the treatment.
I know I have banished negativity from this site, but I hope that you'll forgive me for feeling just a little bit sorry for myself. So today's "top ten" songs are about wallowing in self-pity.
1. Drown In My Own Tears - Ray Charles
2. I'm A Mess - Nick Lowe
3. I'm Alone In The Wilderness - The Pogues
4. The Whole Town's Laughing At Me - Teddy Pendergrass
5. 'Cause Cheap Is How I Feel - Cowboy Junkies
6. Heaven Knows I'm Miserable Now - The Smiths
7. Nobody Wants You When You're Down And Out - Bobby Womack
8. Have Mercy Someone - ZZ Hill
9. What Did I Do To Be So Black And Blue - Louis Armstrong
10. I Need A Mother - Eels
These Ain't Raindrops!
RP
Friday 13 August 2010
Man About The House
Greetings Bloggers.
On my return from hospital, I treated myself to the purchase of a book from Amazon, and the tome I opted for was "C: Because Cowards Ge Cancer Too.." by John Diamond. You know me: I like a little bit of light escapism.
Diamond was a journalist and broadcaster, who was diagnosed with throat cancer in 1997, eventually dying from the disease in 2002, at the age of 47. He chronicled his experiences in a weekly column in The Times, and in this book, which ends in 1999, shortly after he has been told that his cancer has spread to too many places around his throat and neck to warrant any more surgery: effectively a death sentence.
I think Catherine considered it a bit of a perverse choice of reading matter for someone in my position, but actually I found the book quite uplifting, and it certainly hasn't made me feel despondent. Whilst I found that Diamond's experiences were similar to mine in a number of respects, there were sufficient differences for me to continue to feel confident about the chances of a happy ending in my own case.
Moving on, may I apologise for my laggardly approach to the blog. It's a week since my last post, partly due to lethargy, and partly due to there being little to report.
Being at home is great. The quality of care in hospital was wonderful, but there's no place like home. It's just Catherine, me and Molly the dog, as Lucy is on holiday and Emma's living and working in Portsmouth.
Catherine has thrown herself into the role of carer, gently attending to my every whim. She's even taken to bathing my feet, which requires not only devotion, but also a strong constitution! We're visisted every day by the District Nurse, and have got into a routine of going to bed by about 9 o'clock every night.
I've been surprised about just how little energy I have, although it's getting better by the day. Walking up the stairs to bed leaves me breathless, and most days I've had to have an afternoon nap.
Under Catherine's cautious gaze, I'm gradually increasing the amount of exercise I take. One of the high points of every day is taking the dog for a walk: on the first day, I could only manage one circuit of the local park, but we're now up to the standard three laps. I've been reacquainted with many of the other local dog walkers, who have kindly tried not to look too horrified by my appearance, and have even pretended to understand what I'm trying to say.
I've been surprised by how self-conscious I am about how I look and how I sound. The right side of my face is still very swollen - making me look like Desperate Dan's ugly brother - and there is a very visible scar from my lower lip, around the chin and down to the neck. My speech has not been rehabilitated, so is largely incomprehensible, and every time I open my mouth I expel a veritable Niagra of saliva. Not a pretty sight. John Diamond described himself as a "honking dribbler", which about sums it up.
But things are progressing. We went to Bart's on Wednesday, for the weekly Ear, Nose & Throat clinic. The general view was that I'm making good progress all round. The hole in my chin is healing nicely, and - fingers crossed - may have sealed by this time next week, which will allow me to finally drink, having been nil-by-mouth for nearly two months.
I have an appointment on Monday to prepare for the radiotherapy treatment. A mask will be constructed around my face, allowing the rays to be directed to the specific areas requiring treatment. I'll have my first dose of chemo on 31 August, and the radiotherapy will start immediaely afterwards. I've been warned about the debilitating effects of radiotherapy, and John Diamond's book is pretty explicit about how profoundly unpleasant he found it, so I know what to expect, and just have to grin and bear it.
I have been booked to attend my first appointment with the Speech and Language Therapists next Friday. They will teach me how to speak and swallow, both of which are pretty crucial if at the end of all this I am to lead a normal life.
While on the subject of the Speech and Language specialists, I've discovered another way they can help me: I've lost the ability to kiss! I can pucker up, but I somehow can't complete the action, so my attempts just make me look like someone doing a poor impersonation of a guppy. I propose that with immediate effect the department should be renamed Speech Language and Snogging Therapy.
And on that subject, here are ten songs about kissing.
1. Kiss - Prince
2. A Kiss With A Fist - Florence & The Machine
3. I Kissed A Girl - Katy Perry
4. Shut Up And Kiss Me - Mary Chapin Carpenter
5. French Kissing In The USA - Deborah Harry
6. It's In His Kiss - Betty Everett
7. Prelude To A Kiss - Duke Ellington
8. The Perfect Kiss - New Order
9. The He Kissed Me - The Crystals
10. Save All Your Kisses For Me - Brotherhood Of Man
Pucker Up!
RP
On my return from hospital, I treated myself to the purchase of a book from Amazon, and the tome I opted for was "C: Because Cowards Ge Cancer Too.." by John Diamond. You know me: I like a little bit of light escapism.
Diamond was a journalist and broadcaster, who was diagnosed with throat cancer in 1997, eventually dying from the disease in 2002, at the age of 47. He chronicled his experiences in a weekly column in The Times, and in this book, which ends in 1999, shortly after he has been told that his cancer has spread to too many places around his throat and neck to warrant any more surgery: effectively a death sentence.
I think Catherine considered it a bit of a perverse choice of reading matter for someone in my position, but actually I found the book quite uplifting, and it certainly hasn't made me feel despondent. Whilst I found that Diamond's experiences were similar to mine in a number of respects, there were sufficient differences for me to continue to feel confident about the chances of a happy ending in my own case.
Moving on, may I apologise for my laggardly approach to the blog. It's a week since my last post, partly due to lethargy, and partly due to there being little to report.
Being at home is great. The quality of care in hospital was wonderful, but there's no place like home. It's just Catherine, me and Molly the dog, as Lucy is on holiday and Emma's living and working in Portsmouth.
Catherine has thrown herself into the role of carer, gently attending to my every whim. She's even taken to bathing my feet, which requires not only devotion, but also a strong constitution! We're visisted every day by the District Nurse, and have got into a routine of going to bed by about 9 o'clock every night.
I've been surprised about just how little energy I have, although it's getting better by the day. Walking up the stairs to bed leaves me breathless, and most days I've had to have an afternoon nap.
Under Catherine's cautious gaze, I'm gradually increasing the amount of exercise I take. One of the high points of every day is taking the dog for a walk: on the first day, I could only manage one circuit of the local park, but we're now up to the standard three laps. I've been reacquainted with many of the other local dog walkers, who have kindly tried not to look too horrified by my appearance, and have even pretended to understand what I'm trying to say.
I've been surprised by how self-conscious I am about how I look and how I sound. The right side of my face is still very swollen - making me look like Desperate Dan's ugly brother - and there is a very visible scar from my lower lip, around the chin and down to the neck. My speech has not been rehabilitated, so is largely incomprehensible, and every time I open my mouth I expel a veritable Niagra of saliva. Not a pretty sight. John Diamond described himself as a "honking dribbler", which about sums it up.
But things are progressing. We went to Bart's on Wednesday, for the weekly Ear, Nose & Throat clinic. The general view was that I'm making good progress all round. The hole in my chin is healing nicely, and - fingers crossed - may have sealed by this time next week, which will allow me to finally drink, having been nil-by-mouth for nearly two months.
I have an appointment on Monday to prepare for the radiotherapy treatment. A mask will be constructed around my face, allowing the rays to be directed to the specific areas requiring treatment. I'll have my first dose of chemo on 31 August, and the radiotherapy will start immediaely afterwards. I've been warned about the debilitating effects of radiotherapy, and John Diamond's book is pretty explicit about how profoundly unpleasant he found it, so I know what to expect, and just have to grin and bear it.
I have been booked to attend my first appointment with the Speech and Language Therapists next Friday. They will teach me how to speak and swallow, both of which are pretty crucial if at the end of all this I am to lead a normal life.
While on the subject of the Speech and Language specialists, I've discovered another way they can help me: I've lost the ability to kiss! I can pucker up, but I somehow can't complete the action, so my attempts just make me look like someone doing a poor impersonation of a guppy. I propose that with immediate effect the department should be renamed Speech Language and Snogging Therapy.
And on that subject, here are ten songs about kissing.
1. Kiss - Prince
2. A Kiss With A Fist - Florence & The Machine
3. I Kissed A Girl - Katy Perry
4. Shut Up And Kiss Me - Mary Chapin Carpenter
5. French Kissing In The USA - Deborah Harry
6. It's In His Kiss - Betty Everett
7. Prelude To A Kiss - Duke Ellington
8. The Perfect Kiss - New Order
9. The He Kissed Me - The Crystals
10. Save All Your Kisses For Me - Brotherhood Of Man
Pucker Up!
RP
Friday 6 August 2010
Home At Last
Hi All
As announced in Catherine's brief post on Wednesday, I've been released from my prolonged incarceration at Barts, and have been placed in the hands of my dear lady wife, with top notch support from the district nurses. Sorry it's taken me so long to get around to a new blog, but I've been very busy napping, reading crime novels and watching afternoon TV.
So anyway, they packed us off with a suitcase full of medication, and some interesting contraptions to aid my recovery. The devices include a suction machine, which is like a kind of mini-vacuum cleaner, to mop up the excess saliva in my mouth; a nebuliser machine, which uses oxygen and saline to loosen secretions in my lungs; and - Catherine's favourite - a food pump, which hooks up to my stomach tube, to feed me overnight while I sleep.
Leaving the hospital was quite touching. As an old lag, I'd got to know some of the staff quite well, and there were lots of hugs and best wishes. I didn't get chance to say goodbye to all of the nurses who had cared for me with so much compassion and tolerance, so a belated thanks to all of you.
Of course, having been discharged from hospital doesn't mean my ordeal is over, and I will continue to crave your sympathy. To take stock, I have now (I hope) had all the operations necessary, the tumour has been removed, and there should be no need for further in-patient treatment. Still to come is the chemo and radiotherapy, plus the speech and language therapy, which will teach me how to speak and swallow again. Neither of these can commence until the hole in my neck has completely healed up, which is taking a frustratingly long time.
Until that is sorted, I can't take the so-called swallow test, which involves drinking a glass of coloured water, while the great and good look on, checking for leaks. If it goes down OK, I can at least start drinking water again, while the Speech and Language people coach me on how to talk and eat etc. Let's not forget that I haven't had anything to eat or drink through my mouth for almost seven weeks. Everything's been through the tube, so I'm sure you'll understand why I might be getting a bit impatient.
Apart from that, the recovery is progressing reasonably well. I find myself getting tired at various times during the day, and the 30 steps up to our bedroom leave me a bit breathless. I have aches and pains in the jaw and in the chest, so I'll continue to rely on the prescription pain relievers for a while yet.
If I hadn't been ill, we would have gone on our summer holiday yesterday. A whole bunch of us were due to spend a couple of weeks in a hired house in Carnac, southern Brittany. For obvious reasons, Catherine and I have had to stay behind. A shame, but we'll make up for it when I'm well again.
Here are ten songs about holidays.
1. Summer Holiday - Cliff Richard
2. Lovers' Holiday - Peggy Scott & JoJo Benson
3. Holiday Fortnight - The Specials
4. Holiday Frog - Alberto Y Lost Trios Paranoias
5. Holiday in Cambodia - Dead Kennedys
6. Alcoholiday - Teenage Fanclub
7. Come Fly With Me - Frank Sinatra
8. The Lowly Tourist - Loudon Wainwright III
9. Holidays In The Sun - The Sex Pistols
10. Club Tropicana - Wham
Bon Voyage!
RP
As announced in Catherine's brief post on Wednesday, I've been released from my prolonged incarceration at Barts, and have been placed in the hands of my dear lady wife, with top notch support from the district nurses. Sorry it's taken me so long to get around to a new blog, but I've been very busy napping, reading crime novels and watching afternoon TV.
So anyway, they packed us off with a suitcase full of medication, and some interesting contraptions to aid my recovery. The devices include a suction machine, which is like a kind of mini-vacuum cleaner, to mop up the excess saliva in my mouth; a nebuliser machine, which uses oxygen and saline to loosen secretions in my lungs; and - Catherine's favourite - a food pump, which hooks up to my stomach tube, to feed me overnight while I sleep.
Leaving the hospital was quite touching. As an old lag, I'd got to know some of the staff quite well, and there were lots of hugs and best wishes. I didn't get chance to say goodbye to all of the nurses who had cared for me with so much compassion and tolerance, so a belated thanks to all of you.
Of course, having been discharged from hospital doesn't mean my ordeal is over, and I will continue to crave your sympathy. To take stock, I have now (I hope) had all the operations necessary, the tumour has been removed, and there should be no need for further in-patient treatment. Still to come is the chemo and radiotherapy, plus the speech and language therapy, which will teach me how to speak and swallow again. Neither of these can commence until the hole in my neck has completely healed up, which is taking a frustratingly long time.
Until that is sorted, I can't take the so-called swallow test, which involves drinking a glass of coloured water, while the great and good look on, checking for leaks. If it goes down OK, I can at least start drinking water again, while the Speech and Language people coach me on how to talk and eat etc. Let's not forget that I haven't had anything to eat or drink through my mouth for almost seven weeks. Everything's been through the tube, so I'm sure you'll understand why I might be getting a bit impatient.
Apart from that, the recovery is progressing reasonably well. I find myself getting tired at various times during the day, and the 30 steps up to our bedroom leave me a bit breathless. I have aches and pains in the jaw and in the chest, so I'll continue to rely on the prescription pain relievers for a while yet.
If I hadn't been ill, we would have gone on our summer holiday yesterday. A whole bunch of us were due to spend a couple of weeks in a hired house in Carnac, southern Brittany. For obvious reasons, Catherine and I have had to stay behind. A shame, but we'll make up for it when I'm well again.
Here are ten songs about holidays.
1. Summer Holiday - Cliff Richard
2. Lovers' Holiday - Peggy Scott & JoJo Benson
3. Holiday Fortnight - The Specials
4. Holiday Frog - Alberto Y Lost Trios Paranoias
5. Holiday in Cambodia - Dead Kennedys
6. Alcoholiday - Teenage Fanclub
7. Come Fly With Me - Frank Sinatra
8. The Lowly Tourist - Loudon Wainwright III
9. Holidays In The Sun - The Sex Pistols
10. Club Tropicana - Wham
Bon Voyage!
RP
Wednesday 4 August 2010
Stop press.....
Wednesday 4th Aug pm
Great news! Rick is home at last! He was discharged this afternoon and so far all is well.
That's all for now, I just wanted to share the news with everyone.
Catherine x
Great news! Rick is home at last! He was discharged this afternoon and so far all is well.
That's all for now, I just wanted to share the news with everyone.
Catherine x
Sunday 1 August 2010
What a difference a day makes
Saturday 31st July 2.20pm
Yesterday was one of those days when I woke up feeling rotten, for no apparent reason. I hadn't slept particularly well, but that didn't fully explain the reason for my malaise. I felt vaguely feverish, oscillating between profuse sweating and cold shivers, although my body temperature was consistent and healthy. My regular morning text to Catherine said: "Feel like s**t. Tired, sick and depressed", in a shameless attempt to make her feel equally bad.
I sulked gracelessly throughout most of the day, reverting to scribbled notes for communication, as speaking through the tracheostomy all seemed far too much effort. When Catherine came as usual to visit from 2pm - 8pm, I remained in my bed and slept for most of the afternoon.
At some point during the day I got the news that I've picked up MRSA, allowing me to feel even more sorry for myself, but at least this had the consolation that I was moved to a room of my own.
For her part, Catherine remained resolutely upbeat, and humoured my foul mood, to the point where she almost had me back in the land of the living by the time she left. She really has gone beyond the call of duty in this for-better-for-worse stuff.
Put it down to six weeks away from home with frustratingly slow recovery and uncertainty about the future, but there really was little excuse for the way I behaved yesterday.
Then today, equally inexplicably, I awoke feeling bright and breezy, almost euphoric, and ready to face the day. Gone was the boorish oaf of yesterday, replaced by the charming, smiley, happy man you know and love so well.
And my reward for this change in outlook was the long-awaited removal of my tracheostomy. With a minimum of fuss, Phil the Nurse gently removed said encumbrance, and guess what? I didn't choke, or turn blue from lack of oxygen. Like a brave soldier, I just kept on breathing, and four hours later I'm still breathing, so I guess that I might survive this particular exercise.
Removal of the trachy was something I'd been looking forward to with a certain amount of trepidation, but in the event it was a bit of an anti-climax - in a good way. Now that it's done, it brings my departure date forward, and - MRSA permitting - allows me to leave the ward unaccompanied. Now if we can just fix this hole in my neck so I can pass the "swallow test", I'll be on my way home.
The only other thing of significance to tell you about is that progress is being made in respect of my chemo/radiotherapy. I've had some radioactive fluid pumped into my veins, and blood tests to check that my kidneys will be able to cope with the treatment. I don't know what happens if the result of the tests is negative, so let's not go there and spoil my mood.
With what I hope is my imminent departure from hospital looming, today's songs are about leaving:-
1 Time to say goodbye - Bettye Swann
2 Go now - Bessie Banks
3 When you leave - Louden Wainwright III
4 Homeward bound - Simon and Garfunkel
5 Come home - James
6 This is me leaving you - Mary Chapin Carpenter
7 Get out of this house - Shawn Colvin
8 Don't leave - Faithless
9 I don't want to go home - Southside Johny and The Asbury Jukes
10 Gone - John Hiatt
Deep Breaths.
RP
Yesterday was one of those days when I woke up feeling rotten, for no apparent reason. I hadn't slept particularly well, but that didn't fully explain the reason for my malaise. I felt vaguely feverish, oscillating between profuse sweating and cold shivers, although my body temperature was consistent and healthy. My regular morning text to Catherine said: "Feel like s**t. Tired, sick and depressed", in a shameless attempt to make her feel equally bad.
I sulked gracelessly throughout most of the day, reverting to scribbled notes for communication, as speaking through the tracheostomy all seemed far too much effort. When Catherine came as usual to visit from 2pm - 8pm, I remained in my bed and slept for most of the afternoon.
At some point during the day I got the news that I've picked up MRSA, allowing me to feel even more sorry for myself, but at least this had the consolation that I was moved to a room of my own.
For her part, Catherine remained resolutely upbeat, and humoured my foul mood, to the point where she almost had me back in the land of the living by the time she left. She really has gone beyond the call of duty in this for-better-for-worse stuff.
Put it down to six weeks away from home with frustratingly slow recovery and uncertainty about the future, but there really was little excuse for the way I behaved yesterday.
Then today, equally inexplicably, I awoke feeling bright and breezy, almost euphoric, and ready to face the day. Gone was the boorish oaf of yesterday, replaced by the charming, smiley, happy man you know and love so well.
And my reward for this change in outlook was the long-awaited removal of my tracheostomy. With a minimum of fuss, Phil the Nurse gently removed said encumbrance, and guess what? I didn't choke, or turn blue from lack of oxygen. Like a brave soldier, I just kept on breathing, and four hours later I'm still breathing, so I guess that I might survive this particular exercise.
Removal of the trachy was something I'd been looking forward to with a certain amount of trepidation, but in the event it was a bit of an anti-climax - in a good way. Now that it's done, it brings my departure date forward, and - MRSA permitting - allows me to leave the ward unaccompanied. Now if we can just fix this hole in my neck so I can pass the "swallow test", I'll be on my way home.
The only other thing of significance to tell you about is that progress is being made in respect of my chemo/radiotherapy. I've had some radioactive fluid pumped into my veins, and blood tests to check that my kidneys will be able to cope with the treatment. I don't know what happens if the result of the tests is negative, so let's not go there and spoil my mood.
With what I hope is my imminent departure from hospital looming, today's songs are about leaving:-
1 Time to say goodbye - Bettye Swann
2 Go now - Bessie Banks
3 When you leave - Louden Wainwright III
4 Homeward bound - Simon and Garfunkel
5 Come home - James
6 This is me leaving you - Mary Chapin Carpenter
7 Get out of this house - Shawn Colvin
8 Don't leave - Faithless
9 I don't want to go home - Southside Johny and The Asbury Jukes
10 Gone - John Hiatt
Deep Breaths.
RP
Thursday 29 July 2010
The operation that didn't happen
It's been an eventful few days. Tuesday started with the pleasant experience of having a microscope pushed through my nostril and into my mouth, to check whether I am ready to have my tracheostomy "capped off", and then removed.
When I say microscope, I don't mean one of those bulky contraptions they have in school science labs for looking at dead woodlice. That would be really painful. This microscope was a specially made piece of medical equipment, designed to penetrate bogies and other nasal obstacles, to give the viewer a clear picture of the patient's nose and throat area.
Anyway, the conclusion was positive: let's get ready to get rid of the trachy - more of which later.
But the excitement didn't end there. I had an appointment to see nice Dr Leung at the Royal London Dental Institute, to have a look at the state of my teeth post-operation and pre-radiotherapy. So Catherine came to the office early, and we took a cab with Helen - one of our favourite nurses - to Whitechapel for the appointment. My first venture beyond the hospital grounds for over five weeks.
The trip there was simple enough, we had a brief wait before Dr Leung looked into the abyss that is my mouth and declared herself reasonably happy with what she saw, although she wants me to attend another time before the radiotherapy starts.
We then sat in the waiting room and waited - which I guess is what waiting rooms are made for. Eventually, our porter appeared, to push me in my wheelchair, with Catherine and Helen dutifully behind, to the Transport waiting room, for our pre-booked taxi. We waited.
At 5pm, the time at which the Transport Section closes, and with no sign of our cab, we were once again collected by a porter and wheeled to - I kid you not - the Departure Lounge.
This area was as chaotic as Gatwick on a Bank Holiday when the ground staff are on strike. There certainly seemed to be more people arriving than departing. Eventually, our cab arrived and took us back on the short trip to Bart's and the safety of the ward. I think that I spent a maximum of 15 minutes with Dr Leung, but the whole trip - to a hospital 4 or 5 miles away - took over 3 hours. Still, why should I complain? I ain't going nowhere.
All the activity and excitement must have tired me out, because I slept soundly on Tuesday night for a full 12 hours. When I awoke on Wednesday morning, I felt fully refreshed and energised: almost euphoric.
All of which changed when I returned from my morning ablutions, to be greeted by a member of the Plastics staff, who told me that they had decided to carry out another operation on my flapping flap. No warning, just straight out of the blue: they had decided to apply some sutures to the thing, although they had considered and rejected the self same operation a week previously.
Stunned, I signed the consent form, and started getting myself mentally prepared for more facial surgery, more pain, more recovery time. Then the frustration and anger kicked in. I took it out on the only person I could: Manny, the MacMillan nurse. I say the only person, because currently being without coherent speech I could hardly complain to anyone verbally. At least I'd got Manny's mobile phone number and could text her, which I did, saying I felt like their laboratory rat.
Full credit to Manny, who arranged for me to meet with Dr Dilkes, the top man in Ear, Nose and Throat, and told me that someone would come over and collect me forthwith.
A porter duly arrived, packed me into a wheelchair, and with Sergei the nurse to accompany me, took me to .... the wrong place. I then sat growing steadily angrier, wrting abusive notes to Sergei, who eventually came to the view that I was probably right, and managed to find the right place.
Finally gaining an audience with Dr Dilkes, I fired off a tirade of frustration - partly through my incomprehensible speaking tube, and partly in illegibly written notes. The main thrust of my argument was that there was no consistency, and two highly respected medical professionals had no coherent treatment plan.
Dr Dilkes' reaction was to overrule the decision of the Plastics Team, and cancel the surgery. He did not consider it necessary at this stage, and as the person with overall responsibility for my case, his will held sway. So one team wanted to operate; the other team didn't. Go figure.
The ever-willing Sergei wheeled me back to the ward, in the company of Catherine, who by this time had arrived to contribute her unique combination of charm and threat to the debate. Sergei proved to be less adept at driving a wheelchair than nursing sick patients, as at one point he hit a kerb and nearly knocked me out of the chair. That would have been the perfect end to a perfect morning.
Things got better from that point onwards. We had an appointment to meet a Dr Sibtain, who's in charge of radiotherapy, and what a lovely man he is! He gently explained the mixture of chemo and radiotherapy I'll be enduring, in a straightforward but sympathetic way, and then left us with his colleague, Shelly, who will coordinate the treatment, to explain in more detail.
Chemo/radio is not going to be a walk in the park. In fact, it's going to entail several weeks of very unpleasant symptoms, but it's a necessary evil if I want to be as sure as I can be that we've defeated the cancer. In any case, I can't start the treatment until the big hole in my chin - which goes all the way into my mouth - has healed. So watch this space.
We then had the customary half-hour wait for a porter before being transported safely back to my bed.
After all that drama, I don't have much to report, other than to gladly let you know that I have now had my tracheostomy tube successfully "capped off", and look forward to removal of the damn thing very soon.
In recognition of the prevarication over the operation-that-never-was, here are 10- songs about indecision, with thanks to Lucy, Emma and Barney for their suggestions:-
1 Baby can I change my mind - Tyrone Davis
2 Making your mind up - Bucks Fizz
3 Mind blowing decisions - Heatwave
4 Year of the decision - The Three Degrees
5 Are you sure - The Staples Singers
6 Baby don't change your mind - Gladys Knight and The Pips
7 Change your mind - The Killers
8 I just don't know what to do with myself - Dusty Springfield
9 Do nothing - The Specials
10 How can I be sure - David Cassidy
Don't touch me!
RP
When I say microscope, I don't mean one of those bulky contraptions they have in school science labs for looking at dead woodlice. That would be really painful. This microscope was a specially made piece of medical equipment, designed to penetrate bogies and other nasal obstacles, to give the viewer a clear picture of the patient's nose and throat area.
Anyway, the conclusion was positive: let's get ready to get rid of the trachy - more of which later.
But the excitement didn't end there. I had an appointment to see nice Dr Leung at the Royal London Dental Institute, to have a look at the state of my teeth post-operation and pre-radiotherapy. So Catherine came to the office early, and we took a cab with Helen - one of our favourite nurses - to Whitechapel for the appointment. My first venture beyond the hospital grounds for over five weeks.
The trip there was simple enough, we had a brief wait before Dr Leung looked into the abyss that is my mouth and declared herself reasonably happy with what she saw, although she wants me to attend another time before the radiotherapy starts.
We then sat in the waiting room and waited - which I guess is what waiting rooms are made for. Eventually, our porter appeared, to push me in my wheelchair, with Catherine and Helen dutifully behind, to the Transport waiting room, for our pre-booked taxi. We waited.
At 5pm, the time at which the Transport Section closes, and with no sign of our cab, we were once again collected by a porter and wheeled to - I kid you not - the Departure Lounge.
This area was as chaotic as Gatwick on a Bank Holiday when the ground staff are on strike. There certainly seemed to be more people arriving than departing. Eventually, our cab arrived and took us back on the short trip to Bart's and the safety of the ward. I think that I spent a maximum of 15 minutes with Dr Leung, but the whole trip - to a hospital 4 or 5 miles away - took over 3 hours. Still, why should I complain? I ain't going nowhere.
All the activity and excitement must have tired me out, because I slept soundly on Tuesday night for a full 12 hours. When I awoke on Wednesday morning, I felt fully refreshed and energised: almost euphoric.
All of which changed when I returned from my morning ablutions, to be greeted by a member of the Plastics staff, who told me that they had decided to carry out another operation on my flapping flap. No warning, just straight out of the blue: they had decided to apply some sutures to the thing, although they had considered and rejected the self same operation a week previously.
Stunned, I signed the consent form, and started getting myself mentally prepared for more facial surgery, more pain, more recovery time. Then the frustration and anger kicked in. I took it out on the only person I could: Manny, the MacMillan nurse. I say the only person, because currently being without coherent speech I could hardly complain to anyone verbally. At least I'd got Manny's mobile phone number and could text her, which I did, saying I felt like their laboratory rat.
Full credit to Manny, who arranged for me to meet with Dr Dilkes, the top man in Ear, Nose and Throat, and told me that someone would come over and collect me forthwith.
A porter duly arrived, packed me into a wheelchair, and with Sergei the nurse to accompany me, took me to .... the wrong place. I then sat growing steadily angrier, wrting abusive notes to Sergei, who eventually came to the view that I was probably right, and managed to find the right place.
Finally gaining an audience with Dr Dilkes, I fired off a tirade of frustration - partly through my incomprehensible speaking tube, and partly in illegibly written notes. The main thrust of my argument was that there was no consistency, and two highly respected medical professionals had no coherent treatment plan.
Dr Dilkes' reaction was to overrule the decision of the Plastics Team, and cancel the surgery. He did not consider it necessary at this stage, and as the person with overall responsibility for my case, his will held sway. So one team wanted to operate; the other team didn't. Go figure.
The ever-willing Sergei wheeled me back to the ward, in the company of Catherine, who by this time had arrived to contribute her unique combination of charm and threat to the debate. Sergei proved to be less adept at driving a wheelchair than nursing sick patients, as at one point he hit a kerb and nearly knocked me out of the chair. That would have been the perfect end to a perfect morning.
Things got better from that point onwards. We had an appointment to meet a Dr Sibtain, who's in charge of radiotherapy, and what a lovely man he is! He gently explained the mixture of chemo and radiotherapy I'll be enduring, in a straightforward but sympathetic way, and then left us with his colleague, Shelly, who will coordinate the treatment, to explain in more detail.
Chemo/radio is not going to be a walk in the park. In fact, it's going to entail several weeks of very unpleasant symptoms, but it's a necessary evil if I want to be as sure as I can be that we've defeated the cancer. In any case, I can't start the treatment until the big hole in my chin - which goes all the way into my mouth - has healed. So watch this space.
We then had the customary half-hour wait for a porter before being transported safely back to my bed.
After all that drama, I don't have much to report, other than to gladly let you know that I have now had my tracheostomy tube successfully "capped off", and look forward to removal of the damn thing very soon.
In recognition of the prevarication over the operation-that-never-was, here are 10- songs about indecision, with thanks to Lucy, Emma and Barney for their suggestions:-
1 Baby can I change my mind - Tyrone Davis
2 Making your mind up - Bucks Fizz
3 Mind blowing decisions - Heatwave
4 Year of the decision - The Three Degrees
5 Are you sure - The Staples Singers
6 Baby don't change your mind - Gladys Knight and The Pips
7 Change your mind - The Killers
8 I just don't know what to do with myself - Dusty Springfield
9 Do nothing - The Specials
10 How can I be sure - David Cassidy
Don't touch me!
RP
Monday 26 July 2010
Weighty matters
Monday 26th July
Hey, good news: I'm putting on weight. I had my weekly weigh-in yesterday, and I'm up to a massive 74.90 kg, having been a paltry 74.80kg last week. Those of you who are good at sums will have computed by now that in real money, I'm currently about 11st 11lb; about the same as I used to be 25 years ago. Before all this saga started, I was touching 13st, so in spite of the recent recovery, I've lost well over a stone.
Catherine has also lost nearly a stone, as a result of all the chasing around she's had to do. As many of you have commented favourably on our prose writing styles, we've decided to write a book. It will be called "Lose Weight with the Cancer Programme".
There was a new nurse on the ward yesterday: a late-middle aged lady from the agency. She was very gentle and motherly, and I rather liked her, up until the point when she commented to Catherine, "He must have been very handsome when he was a young man". Cheek!
Actually, yesterday was quite a lively day. As you can imagine, weekends are a time when friends and family come out in numbers to visit their sick loved ones.
Amid the hullabaloo, it became apparent that one of the visitors was loudly voicing to the nurses her discontent about the way her husband was being treated. As is so often the case in these situations, the rest of the room went silent, so the only noise we could hear was from this poor lady. She was subtly ushered away to talk about it, and all seemed to resolved amicably. But it set me to thinking; in a ward of 12-15 people, every visitor is only concerned about the wellbeing of one individual, but the staff have to spread themselves quite thinly among them all. Catherine's approach is one of assertive co-operation. She constantly asks why certain things are being done, and pesters the nurses to attend to my various ailments, in an attempt to put me first amound equals in terms of care. She also bribes them with home-made biscuits, which seems to be an effective tactic.
A quick word about religion. In my very first blog, I laid down two basic rules: keep it clean, and no religion. The reasons I made the stipulation in the first place is because I didn't want the blog to degenerate into a forum for evangelical preaching. I am certainly not dismissive of people's beliefs, and for those of you who have said that you pray for me, well thank you for your thoughts - I'm very grateful. I personally am not a believer, although I know people who follow a range of religions, and I completely respect their views. However, this does NOT signify an invitation to start posting "Jesus Saves" messages.
I suppose you're mildly interested in the current situation with regard to my health. Well, it's a bit of a mixed bag. I am now talking a bit, and some of the noises I make are discernible as words. The tracheostomy should be removed in the next couple of days, and plans are being made to commence the radiotherapy. So, all good.
But, I have a big hole in my neck, which goes all the way through to my mouth, and is taking an age to heal. This largely acts as an outlet for saliva, and so dressings are soaking within minutes of being applied. Because of the delicacy of the surrounding tissue, this hole cannot be sewn up, and could take several weeks to heal. Also, one of the very neat stitches in my chest - left over from where they took the skin to stick inside my mouth - has developed into a small fistula (hole to you and me), with some evidence of an infection. I'm assured it's not too serious,
so the overall picture remains rosy.
I started this blog by observing our recent weight loss, so here are ten songs about weight:-
1 Fat - Violent Femmes
2 Can't fool the fat man - Randy Newman
3 Fat man in the bathtub - Little Feat
4 You're the one for me, Fatty - Morrisey
5 The weight - The Band
6 He ain't heavy, he's my brother - The Hollies
7 Lip up fatty - Bad Manners
8 Mr Big Stuff - Jean Knight
9 Fatty fatty - Clancy Eccles
10 How you've grown - 10,000 Maniacs
Keep on slimming!
RP
Hey, good news: I'm putting on weight. I had my weekly weigh-in yesterday, and I'm up to a massive 74.90 kg, having been a paltry 74.80kg last week. Those of you who are good at sums will have computed by now that in real money, I'm currently about 11st 11lb; about the same as I used to be 25 years ago. Before all this saga started, I was touching 13st, so in spite of the recent recovery, I've lost well over a stone.
Catherine has also lost nearly a stone, as a result of all the chasing around she's had to do. As many of you have commented favourably on our prose writing styles, we've decided to write a book. It will be called "Lose Weight with the Cancer Programme".
There was a new nurse on the ward yesterday: a late-middle aged lady from the agency. She was very gentle and motherly, and I rather liked her, up until the point when she commented to Catherine, "He must have been very handsome when he was a young man". Cheek!
Actually, yesterday was quite a lively day. As you can imagine, weekends are a time when friends and family come out in numbers to visit their sick loved ones.
Amid the hullabaloo, it became apparent that one of the visitors was loudly voicing to the nurses her discontent about the way her husband was being treated. As is so often the case in these situations, the rest of the room went silent, so the only noise we could hear was from this poor lady. She was subtly ushered away to talk about it, and all seemed to resolved amicably. But it set me to thinking; in a ward of 12-15 people, every visitor is only concerned about the wellbeing of one individual, but the staff have to spread themselves quite thinly among them all. Catherine's approach is one of assertive co-operation. She constantly asks why certain things are being done, and pesters the nurses to attend to my various ailments, in an attempt to put me first amound equals in terms of care. She also bribes them with home-made biscuits, which seems to be an effective tactic.
A quick word about religion. In my very first blog, I laid down two basic rules: keep it clean, and no religion. The reasons I made the stipulation in the first place is because I didn't want the blog to degenerate into a forum for evangelical preaching. I am certainly not dismissive of people's beliefs, and for those of you who have said that you pray for me, well thank you for your thoughts - I'm very grateful. I personally am not a believer, although I know people who follow a range of religions, and I completely respect their views. However, this does NOT signify an invitation to start posting "Jesus Saves" messages.
I suppose you're mildly interested in the current situation with regard to my health. Well, it's a bit of a mixed bag. I am now talking a bit, and some of the noises I make are discernible as words. The tracheostomy should be removed in the next couple of days, and plans are being made to commence the radiotherapy. So, all good.
But, I have a big hole in my neck, which goes all the way through to my mouth, and is taking an age to heal. This largely acts as an outlet for saliva, and so dressings are soaking within minutes of being applied. Because of the delicacy of the surrounding tissue, this hole cannot be sewn up, and could take several weeks to heal. Also, one of the very neat stitches in my chest - left over from where they took the skin to stick inside my mouth - has developed into a small fistula (hole to you and me), with some evidence of an infection. I'm assured it's not too serious,
so the overall picture remains rosy.
I started this blog by observing our recent weight loss, so here are ten songs about weight:-
1 Fat - Violent Femmes
2 Can't fool the fat man - Randy Newman
3 Fat man in the bathtub - Little Feat
4 You're the one for me, Fatty - Morrisey
5 The weight - The Band
6 He ain't heavy, he's my brother - The Hollies
7 Lip up fatty - Bad Manners
8 Mr Big Stuff - Jean Knight
9 Fatty fatty - Clancy Eccles
10 How you've grown - 10,000 Maniacs
Keep on slimming!
RP
Sunday 25 July 2010
For crying out loud
Friday 23rd July am
It's funny. I hadn't cried for days, maybe as long as a week. Then this morning I was idling the time away, and looked through the little photograph album that Catherine and the girls gave me before I came into hospital - just a bunch of pics of loved ones in various happy poses - when I felt myself welling up, with tears streaming liberally down my face.
Maybe a good cry is therapeutic, but I just felt like a ridiculous softy, weeping for no reason in front of all the staff and patients on the ward. Particularly as all the signs are so resoundingly positive. Maybe I'm just getting soft in my old age.
A hospital ward is like a miniature community, with a bunch of disparate folk brought together with the one common denominator of illness. Of course, the community is constantly shifting, as people leave (sometimes, believe it or not, in less than a month), and new arrivals follow in their wake.
When, like me, you're literally speechless, it can be difficult to develop any real rapport with your fellow patients, but it is heartening to sometimes find people who are going through similar or worse experiences, and to strike up a certain camaraderie. I've developed friendships with a couple of people since I've been here, and I'll always value their moral support, even though I may never see them again.
Conversely, those of us who are too poor or too mean to go private are stuck on a public ward, and cannot choose the people we are interned with. As I've never been particularly known for my patience or tolerance of anyone who doesn't fit my narrow definition of a "good bloke", it will come as no surprise that some of the inmates irritate me immensly.
The latest such individual is an ageing cockney, possessed of a booming voice, and an inability to stop talking for even the shortest period.
Last night, as some of us tried to sleep he held a mainly one-way conversation with the man in the bed opposite to his, which covered a range of subjects - but the main topic was himself. Today has seen a succession of outgoing calls on his mobile phone to his undoubtedly concerned friends and family. I feel so much better informed now that he has given me - and everybody else in the ward - the graphic detail of the blood in his urine. I must remember to add this to my list of party conversation topics. In the meantime, is it uncharitable of me to wish they'd give him a tracheostomy, just to shut him up?
As I started this post by confessing to a lachrymose moment, I'll finish it with ten songs about crying:-
1 Don't cry no tears - Neil Young
2 Letter full of tears - Gladys Knight and The Pips
3 The tracks of my tears - Smokey Robinson and The Miracles
4 Hold me while I cry - Irma Thomas
5 Here come those tears again - Jackson Browne
6 The sound of crying - Prefab Sprout
7 Cry to me - Candi Staton
8 Town cryer - Elvis Costello and the Attractions
9 Tears - Teenage Fanclub
10 Fool to cry - The Rolling Stones
Peace, love and understanding!
RP
It's funny. I hadn't cried for days, maybe as long as a week. Then this morning I was idling the time away, and looked through the little photograph album that Catherine and the girls gave me before I came into hospital - just a bunch of pics of loved ones in various happy poses - when I felt myself welling up, with tears streaming liberally down my face.
Maybe a good cry is therapeutic, but I just felt like a ridiculous softy, weeping for no reason in front of all the staff and patients on the ward. Particularly as all the signs are so resoundingly positive. Maybe I'm just getting soft in my old age.
A hospital ward is like a miniature community, with a bunch of disparate folk brought together with the one common denominator of illness. Of course, the community is constantly shifting, as people leave (sometimes, believe it or not, in less than a month), and new arrivals follow in their wake.
When, like me, you're literally speechless, it can be difficult to develop any real rapport with your fellow patients, but it is heartening to sometimes find people who are going through similar or worse experiences, and to strike up a certain camaraderie. I've developed friendships with a couple of people since I've been here, and I'll always value their moral support, even though I may never see them again.
Conversely, those of us who are too poor or too mean to go private are stuck on a public ward, and cannot choose the people we are interned with. As I've never been particularly known for my patience or tolerance of anyone who doesn't fit my narrow definition of a "good bloke", it will come as no surprise that some of the inmates irritate me immensly.
The latest such individual is an ageing cockney, possessed of a booming voice, and an inability to stop talking for even the shortest period.
Last night, as some of us tried to sleep he held a mainly one-way conversation with the man in the bed opposite to his, which covered a range of subjects - but the main topic was himself. Today has seen a succession of outgoing calls on his mobile phone to his undoubtedly concerned friends and family. I feel so much better informed now that he has given me - and everybody else in the ward - the graphic detail of the blood in his urine. I must remember to add this to my list of party conversation topics. In the meantime, is it uncharitable of me to wish they'd give him a tracheostomy, just to shut him up?
As I started this post by confessing to a lachrymose moment, I'll finish it with ten songs about crying:-
1 Don't cry no tears - Neil Young
2 Letter full of tears - Gladys Knight and The Pips
3 The tracks of my tears - Smokey Robinson and The Miracles
4 Hold me while I cry - Irma Thomas
5 Here come those tears again - Jackson Browne
6 The sound of crying - Prefab Sprout
7 Cry to me - Candi Staton
8 Town cryer - Elvis Costello and the Attractions
9 Tears - Teenage Fanclub
10 Fool to cry - The Rolling Stones
Peace, love and understanding!
RP
Thursday 22 July 2010
A beginner's guide to hospital life
As a long-serving inmate, I feel supremely qualified to offer this definitive guide to life in a modern English hospital. Keep it to hand, as - should you ever have the misfortune to endure a prolonged stay at a NHS institution - the advice contained within could make the difference between bloody purgatory and mere misery.
1 Doctors don't wear white coats. In fact, most of them don't wear anything that most of us would deem suitable as workday attire. If you see someone who looks like he's in his gardening clothes, he's likely to be an eminent surgeon.
2 Hospital life is build around routine. As you can imagine, it's an intensely boring existence, with the "high points" rarely rising above the mundane. Visiting time is obviously the best bit, but otherwise it's a matter of looking forward to the thrice-daily medication rounds. Should the drug-fairy be late, there is the prospect of mutiny in the ward, as outraged withrawal-suffering patients show their discontent. I personally experienced this affront recently, when the night-time trolley - normally dispensing its wonders by 9.00pm, did not arrive until almost 10.30pm. By this time, I had composed a letter of complaint to my MP.
3 As a patient, you are at the mercy of the medical profession, and particularly the nurses. If you want them to be nice to you, I strongly recommend that you are pre-emptively nice to them. Catherine has employed the blatant ploy of regularly bringing in home-made cookies for the staff, which may not necessarily have ensured preferential treatment, but I certainly have no complaints. Conversely, I don't recommend the tactic employed by the man in the bed next to mine, whose method of asking for a bed pan is to shout at the top of his voice, "Nurse! Want s**t!"
4 Although the patient is provided with a device for calling for assistance, this is unlikely to be met with an immediate response. Similarly, trying to catch the nurse's eye is something of a battle of wills, as they are past masters of avoiding eye contact. As I'm lumbered with a tracheostomy - and therefore unable to speak, I can't say whether just shouting "Nurse!" (see 3 above) is any more effective, but I suspect not. I think there is a very good reason for all this, and it's not down to any lethargy of the part of the nurses. For the most part, I think it's because they are acutely aware of the needs and priorities of patients at any given time, and if they are ignoring my requests to cut my toe-nails, it's probably because the man in bed 5 suffering from an angina attack is perceived to be of greater importance.
5 A source of some sadness - for me, at least - is that there is nothing remotely "sexy" about nurses' uniforms. Some of you will recall that in my youth I enjoyed some romantic liaisons with representatives of this noble profession, and my rose-tinted recollections are of starched, curve-emphasising dresses and dark stockings. Today, it's mostly trousers and tunics of indeterminate shape; functional, I'm sure, but not in the least bit flattering. Not that I'm interested in this sort of thing, of course.
6 The hospital is possibly the most ethnically diverse working place I've observed, from those performing the most menial tasks, to the most respected specialists. I know that the NHS has always depended heavily upon the immigrant community, but I've been surprised by the variety of nationalities represented: a veritable United Nations. I'm not just saying this to appear politically correct, but I do wonder how the UK's public services would function with the sort of immigration restrictions that some people promote.
7 I don't know why it should be the case, but I can't get over a feeling of amusement at the ready availability of all sorts of drugs, which would be severely frowned upon "on the outside". You have pain? We can offer relief. Can't sleep? Here's a seditive. Feeling anxious? Here's something to ease the worry. Depressed? Have a happy pill. Clearly, medication is a vital part of the overall treatment, but it has come as a bit of surprise that the doctors are prepared to prescibe with such apparent alacrity. In normal life, alcohol is my drug of choice, and I'm reluctant to seek chemical relief for most ailments - with the obvious exception of paracetamol for the occasional hangover. I'm assured that I'm not going to develop any long-term dependency, so I suppose the best thing is just to accept the meds with gratitude, and try not to think how much more unbearable this whole thing would have been without them.
8 Just like any other workplace, the staff have their miscellaneous gripes about everything that's wrong, including petty rules, faulty equipment, and particularly the faceless bureaucrats who put unnecessary obstacles in their way to prevent them doing their jobs effectively. I gather that Procurement are the chief culprits, by failing to get the right goods to the right place at the right time. No comment.
Moving on, it occurs to me that I haven't given you an update on my own progess of late, so I'm pleased to report that everything's going pretty well. Following the aborted operation on Monday, I've been feeling physically well, and continue to get stronger. The flap seems to be flourishing, and although I've still got this blasted tracheostomy, I've graduated (again) to the speaking tube, which allows me to shout incoherent, monosylabbic nonsense. Anyone who's seen me on a heavy Saturday night will know what it's like.
With any luck. I'll be able to discard the tracheostomy entirely over the next few days, and the target is to return home some time next week, prior to commencing radiotherapy.
Anyway, as I am now, in theory at least, able to speak, today's songs are about talking:-
1 Talk to me - Southside Johnny and The Asbury Jukes
2 Everybodys' talkin' - Nilsson (purists may point out that the original was by Fred Neill)
3 Silent all these years - Tori Amos
4 You took the words right out of my mouth - Meatloaf
5 Say something - James
6 Tell it like it is - Aaron Neville
7 When we sing together - Victorial Williams and Mark Olsen
8 Yakety yak - The Coasters
9 Only tongue can tell - The Trashcan Sinatras
10 I had a talk with my man - Mitty Collier
Stay patient, patients!
RP
1 Doctors don't wear white coats. In fact, most of them don't wear anything that most of us would deem suitable as workday attire. If you see someone who looks like he's in his gardening clothes, he's likely to be an eminent surgeon.
2 Hospital life is build around routine. As you can imagine, it's an intensely boring existence, with the "high points" rarely rising above the mundane. Visiting time is obviously the best bit, but otherwise it's a matter of looking forward to the thrice-daily medication rounds. Should the drug-fairy be late, there is the prospect of mutiny in the ward, as outraged withrawal-suffering patients show their discontent. I personally experienced this affront recently, when the night-time trolley - normally dispensing its wonders by 9.00pm, did not arrive until almost 10.30pm. By this time, I had composed a letter of complaint to my MP.
3 As a patient, you are at the mercy of the medical profession, and particularly the nurses. If you want them to be nice to you, I strongly recommend that you are pre-emptively nice to them. Catherine has employed the blatant ploy of regularly bringing in home-made cookies for the staff, which may not necessarily have ensured preferential treatment, but I certainly have no complaints. Conversely, I don't recommend the tactic employed by the man in the bed next to mine, whose method of asking for a bed pan is to shout at the top of his voice, "Nurse! Want s**t!"
4 Although the patient is provided with a device for calling for assistance, this is unlikely to be met with an immediate response. Similarly, trying to catch the nurse's eye is something of a battle of wills, as they are past masters of avoiding eye contact. As I'm lumbered with a tracheostomy - and therefore unable to speak, I can't say whether just shouting "Nurse!" (see 3 above) is any more effective, but I suspect not. I think there is a very good reason for all this, and it's not down to any lethargy of the part of the nurses. For the most part, I think it's because they are acutely aware of the needs and priorities of patients at any given time, and if they are ignoring my requests to cut my toe-nails, it's probably because the man in bed 5 suffering from an angina attack is perceived to be of greater importance.
5 A source of some sadness - for me, at least - is that there is nothing remotely "sexy" about nurses' uniforms. Some of you will recall that in my youth I enjoyed some romantic liaisons with representatives of this noble profession, and my rose-tinted recollections are of starched, curve-emphasising dresses and dark stockings. Today, it's mostly trousers and tunics of indeterminate shape; functional, I'm sure, but not in the least bit flattering. Not that I'm interested in this sort of thing, of course.
6 The hospital is possibly the most ethnically diverse working place I've observed, from those performing the most menial tasks, to the most respected specialists. I know that the NHS has always depended heavily upon the immigrant community, but I've been surprised by the variety of nationalities represented: a veritable United Nations. I'm not just saying this to appear politically correct, but I do wonder how the UK's public services would function with the sort of immigration restrictions that some people promote.
7 I don't know why it should be the case, but I can't get over a feeling of amusement at the ready availability of all sorts of drugs, which would be severely frowned upon "on the outside". You have pain? We can offer relief. Can't sleep? Here's a seditive. Feeling anxious? Here's something to ease the worry. Depressed? Have a happy pill. Clearly, medication is a vital part of the overall treatment, but it has come as a bit of surprise that the doctors are prepared to prescibe with such apparent alacrity. In normal life, alcohol is my drug of choice, and I'm reluctant to seek chemical relief for most ailments - with the obvious exception of paracetamol for the occasional hangover. I'm assured that I'm not going to develop any long-term dependency, so I suppose the best thing is just to accept the meds with gratitude, and try not to think how much more unbearable this whole thing would have been without them.
8 Just like any other workplace, the staff have their miscellaneous gripes about everything that's wrong, including petty rules, faulty equipment, and particularly the faceless bureaucrats who put unnecessary obstacles in their way to prevent them doing their jobs effectively. I gather that Procurement are the chief culprits, by failing to get the right goods to the right place at the right time. No comment.
Moving on, it occurs to me that I haven't given you an update on my own progess of late, so I'm pleased to report that everything's going pretty well. Following the aborted operation on Monday, I've been feeling physically well, and continue to get stronger. The flap seems to be flourishing, and although I've still got this blasted tracheostomy, I've graduated (again) to the speaking tube, which allows me to shout incoherent, monosylabbic nonsense. Anyone who's seen me on a heavy Saturday night will know what it's like.
With any luck. I'll be able to discard the tracheostomy entirely over the next few days, and the target is to return home some time next week, prior to commencing radiotherapy.
Anyway, as I am now, in theory at least, able to speak, today's songs are about talking:-
1 Talk to me - Southside Johnny and The Asbury Jukes
2 Everybodys' talkin' - Nilsson (purists may point out that the original was by Fred Neill)
3 Silent all these years - Tori Amos
4 You took the words right out of my mouth - Meatloaf
5 Say something - James
6 Tell it like it is - Aaron Neville
7 When we sing together - Victorial Williams and Mark Olsen
8 Yakety yak - The Coasters
9 Only tongue can tell - The Trashcan Sinatras
10 I had a talk with my man - Mitty Collier
Stay patient, patients!
RP
Tuesday 20 July 2010
An open and shut case
Tuesday 20th July am
It may be a cliche, but nursing staff are genuinely obsessed about the state of their patients' bowels.
Every morning on waking, and every evening before retiring, I am asked the inevitable question "Did you move your bowels last night/today?". If I answer in the affirmative, I am interrogated about form and colour; they even have a sheet depicting different constitutions of poo, from which you can select the one most closely resembling your own movement.
An answer in the negative inevitably provokes a disapproving look, and a reminder that failure to perform during the coming 12 hours will necessitate the administration of laxatives along with the next allocation of medicines.
Those of you who know me well will testify that I am not normally one to shirk away from a bit of coarse, toilet talk, but I must confess that I find the repeated discussions about my defecations to be deeply embarrassing although admittedly there are worse things.
Before I entered hospital I decided that, for the well-being of both parties, I would restrict nurses' exposure to my private parts to the very minimum. Fortunately, as I have largely been mobile throught my extended stay, I have been able to wash and wipe myself unaided. There are, however, some poor souls who are much more infirm, and entirely dependent upon the nurses for all matters of personal hygiene. I shudder to think what goes on behind those modesty curtains, but surely wiping the bottom of a suffering patient goes well beyond the call of duty.
And before any of my more laddish acquaintances launch into a "phwoar - if I could get a nurse to wash my willy I'd show her a thing or two" monologue, may I remind you that this is a hospital, populated by seriously ill patients. Libido appears to be at an all-time low; presumably naturally, and not as a result of anything they put in the medication. In real life, it is not a re-run of "Carry on Matron": I think the nurses can all feel reasonably safe from Sid James-style attempts at groping.
Anyway, here are ten songs about bowel movements, with thanks for contributions by my good friend Barney and little brother Dave:-
1 Constipation blues - Screamin' Jay Hawkins
2 Here I go again - Archie Bell and The Drells
3 I second that (e)motion - Smokey Robinson and The Miracles
4 We can work it out - The Beatles
5 Howlin' wind - Graham Parker and The Rumour
6 Dirty laundry - Curtis Mayfield
7 Movin' - Brass Construction
8 Float on - The Floaters
9 Empty ring - Paul Weller
10 Colours - Louden Wainwright III *
*Colours is a song about different hues of dog excrement, starting with the line "The s**t on the streets of this town comes in diffent shades of brown".
May I take this opportunity to apologise to my more sensitive readers, who may find today's subject matter an unfortunate departure from recent posts.
Stay regular!
RP
It may be a cliche, but nursing staff are genuinely obsessed about the state of their patients' bowels.
Every morning on waking, and every evening before retiring, I am asked the inevitable question "Did you move your bowels last night/today?". If I answer in the affirmative, I am interrogated about form and colour; they even have a sheet depicting different constitutions of poo, from which you can select the one most closely resembling your own movement.
An answer in the negative inevitably provokes a disapproving look, and a reminder that failure to perform during the coming 12 hours will necessitate the administration of laxatives along with the next allocation of medicines.
Those of you who know me well will testify that I am not normally one to shirk away from a bit of coarse, toilet talk, but I must confess that I find the repeated discussions about my defecations to be deeply embarrassing although admittedly there are worse things.
Before I entered hospital I decided that, for the well-being of both parties, I would restrict nurses' exposure to my private parts to the very minimum. Fortunately, as I have largely been mobile throught my extended stay, I have been able to wash and wipe myself unaided. There are, however, some poor souls who are much more infirm, and entirely dependent upon the nurses for all matters of personal hygiene. I shudder to think what goes on behind those modesty curtains, but surely wiping the bottom of a suffering patient goes well beyond the call of duty.
And before any of my more laddish acquaintances launch into a "phwoar - if I could get a nurse to wash my willy I'd show her a thing or two" monologue, may I remind you that this is a hospital, populated by seriously ill patients. Libido appears to be at an all-time low; presumably naturally, and not as a result of anything they put in the medication. In real life, it is not a re-run of "Carry on Matron": I think the nurses can all feel reasonably safe from Sid James-style attempts at groping.
Anyway, here are ten songs about bowel movements, with thanks for contributions by my good friend Barney and little brother Dave:-
1 Constipation blues - Screamin' Jay Hawkins
2 Here I go again - Archie Bell and The Drells
3 I second that (e)motion - Smokey Robinson and The Miracles
4 We can work it out - The Beatles
5 Howlin' wind - Graham Parker and The Rumour
6 Dirty laundry - Curtis Mayfield
7 Movin' - Brass Construction
8 Float on - The Floaters
9 Empty ring - Paul Weller
10 Colours - Louden Wainwright III *
*Colours is a song about different hues of dog excrement, starting with the line "The s**t on the streets of this town comes in diffent shades of brown".
May I take this opportunity to apologise to my more sensitive readers, who may find today's subject matter an unfortunate departure from recent posts.
Stay regular!
RP
Monday 19 July 2010
Confounding expectations
Monday 19th July am
It doesn't take much to confuse me, so I admit it: I'm confused.
I woke up this morning fully expecting yet another operation on the disobedient flap, and the ward staff were duly preparing me, by providing the fetching theatre attire, sticking needles into me, and generally making life uncomfortable.
Then about midday, I received a visit from plastic surgeon par excellence, to tell me to stand down; there will be no surgery today. WTF?
I'm assured that this is not because I'm a hopeless case and beyond saving, but that they have decided instead to accelerate commencement of radiotherapy, which will reduce the size of the rippling flap, and enable a much simpler procedure in due course, to facilitate a permanent fixture of flap to surrounding palate tissue. Apparently this will be much less risky to long-term recovery, and allows us to crack on with the much-needed radiotherapy that much sooner. So why can't I help thinking that they're making this up as they go along?
The venerable Miss Patel responded to my numerous written questions with reassuring and convincing answers, and I'm left feeling - what? - relieved, concerned, hopeful, confused.
My main immediate worry was that the bulk of the flap has been causing me to have retching fits - I had another one yesterday evening - and very unpleasant they are too. On probing Miss Patel about this, she kind of acknowledged that I'm going to have to learn to live with it, she also prescribed more drugs to hold the sickness at bay.
So now it would seem that my main priority while I'm in hospital is to wean myself off the tracheostomy; then we should be good(?) to go. So at least it gives me a goal.
Here are ten songs about confusion:-
1 Ball of confusion - The Temptations
2 I can't tell the bottom from the top - The Hollies
3 Mr Ambivalent - Loudon Wainwright III
4 I can't explain - The Who
5 Bewitched, bothered and bewildered - Ella Fitzgerald
6 Puzzlin' evidence - Talking Heads
7 God only knows - The Beach Boys
8 It's a big old goofy world - John Prine
9 Dazed and confused - Led Zeppelin
10 Mysterioso - Thelonius Monk
Onwards and upwards!
RP
It doesn't take much to confuse me, so I admit it: I'm confused.
I woke up this morning fully expecting yet another operation on the disobedient flap, and the ward staff were duly preparing me, by providing the fetching theatre attire, sticking needles into me, and generally making life uncomfortable.
Then about midday, I received a visit from plastic surgeon par excellence, to tell me to stand down; there will be no surgery today. WTF?
I'm assured that this is not because I'm a hopeless case and beyond saving, but that they have decided instead to accelerate commencement of radiotherapy, which will reduce the size of the rippling flap, and enable a much simpler procedure in due course, to facilitate a permanent fixture of flap to surrounding palate tissue. Apparently this will be much less risky to long-term recovery, and allows us to crack on with the much-needed radiotherapy that much sooner. So why can't I help thinking that they're making this up as they go along?
The venerable Miss Patel responded to my numerous written questions with reassuring and convincing answers, and I'm left feeling - what? - relieved, concerned, hopeful, confused.
My main immediate worry was that the bulk of the flap has been causing me to have retching fits - I had another one yesterday evening - and very unpleasant they are too. On probing Miss Patel about this, she kind of acknowledged that I'm going to have to learn to live with it, she also prescribed more drugs to hold the sickness at bay.
So now it would seem that my main priority while I'm in hospital is to wean myself off the tracheostomy; then we should be good(?) to go. So at least it gives me a goal.
Here are ten songs about confusion:-
1 Ball of confusion - The Temptations
2 I can't tell the bottom from the top - The Hollies
3 Mr Ambivalent - Loudon Wainwright III
4 I can't explain - The Who
5 Bewitched, bothered and bewildered - Ella Fitzgerald
6 Puzzlin' evidence - Talking Heads
7 God only knows - The Beach Boys
8 It's a big old goofy world - John Prine
9 Dazed and confused - Led Zeppelin
10 Mysterioso - Thelonius Monk
Onwards and upwards!
RP
Sunday 18 July 2010
Doom and gloom
Sunday 12th July am
I woke up this morning feeling sad and lethargic. No particular reason why, other than I've been here for four weeks and I hate it. And it's Sunday morning, and I should be out enjoying the sunshine walking the dog. Or preparing Sunday lunch with a glass of something to pass the time. Little mundane things that make life so sweet.
Maybe it's all this one-step-forward-one-step-back stuff, that stops me from seeing a way out of here. We're always one to two weeks away from being discharged, yet it seems to be getting no closer.
These thoughts have got to stop. We're not at home to Mr. Negativity, and strength and determination are the qualities which will result in a quick release.
But it did get me to thinking. What if after all these hospital treatments, and the six weeks of radiotherapy, and the however-long of recovery when I learn to eat, drink and speak again, what if in a couple of years time the doctors say the cancer's returned, and I need to go through the whole thing again. I honestly don't know what my answer would be.
Alright - that's enough of the depressing stuff. Let me tell you what I've got in store the next few days. Well, my dad and brothers are up in London, so they'll come and see me today, along with Catherine and Lucy. Emma can't be there 'cause she's at a pop concert in Spain, but I'll be thinking of her.
Tomorrow is the next - and, I hope, last - in the series of operations to rectify the disobedient pectoral flap. On top of this, I'm getting used to the "talking valve" of my tracheostomy. With all this excitement, what have I got to complain about?
So anyway, sorry to be so downbeat today, I'll be better soon.
Ten songs about being moody:-
1 Sad mood - Sam Cooke
2 Troubles, heartaches and sadness - Ann Peebles
3 Poor, poor pitiful me - Linda Robnstadt
4 My uptight life - Teenage Fanclub
5 Why does my heart feel so bad - Moby
6 Sad and lonesome - Eddie Hinton
7 In the mood - Glen Miller and his orchestra
8 I'm down in the dumps - Bessie Smith
9 Blue and sentimental - Ike Quebec
10 Hot and anxious - Don Redman
Coming up from the depths
RP
I woke up this morning feeling sad and lethargic. No particular reason why, other than I've been here for four weeks and I hate it. And it's Sunday morning, and I should be out enjoying the sunshine walking the dog. Or preparing Sunday lunch with a glass of something to pass the time. Little mundane things that make life so sweet.
Maybe it's all this one-step-forward-one-step-back stuff, that stops me from seeing a way out of here. We're always one to two weeks away from being discharged, yet it seems to be getting no closer.
These thoughts have got to stop. We're not at home to Mr. Negativity, and strength and determination are the qualities which will result in a quick release.
But it did get me to thinking. What if after all these hospital treatments, and the six weeks of radiotherapy, and the however-long of recovery when I learn to eat, drink and speak again, what if in a couple of years time the doctors say the cancer's returned, and I need to go through the whole thing again. I honestly don't know what my answer would be.
Alright - that's enough of the depressing stuff. Let me tell you what I've got in store the next few days. Well, my dad and brothers are up in London, so they'll come and see me today, along with Catherine and Lucy. Emma can't be there 'cause she's at a pop concert in Spain, but I'll be thinking of her.
Tomorrow is the next - and, I hope, last - in the series of operations to rectify the disobedient pectoral flap. On top of this, I'm getting used to the "talking valve" of my tracheostomy. With all this excitement, what have I got to complain about?
So anyway, sorry to be so downbeat today, I'll be better soon.
Ten songs about being moody:-
1 Sad mood - Sam Cooke
2 Troubles, heartaches and sadness - Ann Peebles
3 Poor, poor pitiful me - Linda Robnstadt
4 My uptight life - Teenage Fanclub
5 Why does my heart feel so bad - Moby
6 Sad and lonesome - Eddie Hinton
7 In the mood - Glen Miller and his orchestra
8 I'm down in the dumps - Bessie Smith
9 Blue and sentimental - Ike Quebec
10 Hot and anxious - Don Redman
Coming up from the depths
RP
Saturday 17 July 2010
The significant other
Friday 16th July 11am
I've got the best wife in the world. Sorry to disappoint you if you thought that your little lady was the one, but this is my blog, and I decide. No extra time, no penalty shoot-out: my wife's the best.
The whole cancer trip is a shared family ordeal, and basically you adopt your respective roles. I play the part of the sufferer, the not-so-stoical patient, living in a state of numb fear while having various unthinkable things done to me by the medical profession. A basically passive role, in which I have little say in what happens and how things progress.
Catherine's role is that of loving carer, keeping spirits high, mopping my fevered brow, smiling and reassuring, keeping me upbeat, so that even in my darkest moments I know that everything's going to be alright. A few people have commented on how lucky I am to have her, believe me, I already know.
Actually, Catherine and I have a great relationship anyway. We didn't need this little spot of adversity to remind us how much we love each other. But now it's come along, she's been magnificent.
I told my Dad yesterday that I thought this whole affair had brought Catherine and myself closer together, but I'm not sure if that's true. We were already remarkably close, and what I really meant was just what a complete joy she's been to me throughout this hell. I knew she would be, and she keeps me going when I feel like giving up. When my Mum died a couple of years ago, we talked about our feelings, and I said the normal stuff about how important it is to keep telling your loved ones how much they mean to you, and to not fall out over relatively trivial matters. And yet, I think that people who love each other continue to engage in meaningless warfare about the most absurd, unimportant things.
So what is this all leading up to? Possibly a statement of the bleeding obvious: a plea to all the people I know and love to make sure that you never let the ones you love doubt it for a minute. Life's too short.
As for progress (?) on the medical front, there's goodish and baddish news. The good news - established through a quick stab with a needle - is that the flap remains alive and well. The bad news is that the stitches are coming apart again. This may not be too serious, although could result in a further delay in my release, or may mean - yikes! - yet more surgery.
As today's theme is all about lurve, I thought it would be cool to do 10 songs about love, but specifically not of the "Three times a wonderful lady in red tonight" variety, which would inevitably result in a return of my puking fits:-
1 Couldn't love you more - John Martyn
2 Your love gets sweeter every day - Finlay Quaye
3 Do I love you (indeed I do) - Frank Wilson
4 Always - Leonard Cohen
5 Pledging my love - Marvin Gaye and Diana Ross
6 Perfect world - Kate Campbell
7 If - The Divine Comedy
8 Into my arms - Nick Cave and The Bad Seeds
9 You send me - Sam Cooke
10 Can I sleep in your arms tonight - Carl Bozulich
RP
PS Latest update on flap front - Rick will need a further operation, probably on Monday. The latest cunning plan to fix the hole in the flap is to re-open his jaw (apparently the bone won't have healed fully yet so it will be a simple matter of taking out a couple of screws and levering the bone apart!), filling in the hole with muscle from the back of the flap (which as it has come from Rick's chest will have an abundant supply of muscle), stitching that in place and Bob's your uncle. After about 10 days the muscle will resemble the rest of the lining in his mouth so no-one will know the difference - that is assuming the muscle will stay in place for 10 days...
Here's hoping
Catherine
PPS I did like typing todays blog!
I've got the best wife in the world. Sorry to disappoint you if you thought that your little lady was the one, but this is my blog, and I decide. No extra time, no penalty shoot-out: my wife's the best.
The whole cancer trip is a shared family ordeal, and basically you adopt your respective roles. I play the part of the sufferer, the not-so-stoical patient, living in a state of numb fear while having various unthinkable things done to me by the medical profession. A basically passive role, in which I have little say in what happens and how things progress.
Catherine's role is that of loving carer, keeping spirits high, mopping my fevered brow, smiling and reassuring, keeping me upbeat, so that even in my darkest moments I know that everything's going to be alright. A few people have commented on how lucky I am to have her, believe me, I already know.
Actually, Catherine and I have a great relationship anyway. We didn't need this little spot of adversity to remind us how much we love each other. But now it's come along, she's been magnificent.
I told my Dad yesterday that I thought this whole affair had brought Catherine and myself closer together, but I'm not sure if that's true. We were already remarkably close, and what I really meant was just what a complete joy she's been to me throughout this hell. I knew she would be, and she keeps me going when I feel like giving up. When my Mum died a couple of years ago, we talked about our feelings, and I said the normal stuff about how important it is to keep telling your loved ones how much they mean to you, and to not fall out over relatively trivial matters. And yet, I think that people who love each other continue to engage in meaningless warfare about the most absurd, unimportant things.
So what is this all leading up to? Possibly a statement of the bleeding obvious: a plea to all the people I know and love to make sure that you never let the ones you love doubt it for a minute. Life's too short.
As for progress (?) on the medical front, there's goodish and baddish news. The good news - established through a quick stab with a needle - is that the flap remains alive and well. The bad news is that the stitches are coming apart again. This may not be too serious, although could result in a further delay in my release, or may mean - yikes! - yet more surgery.
As today's theme is all about lurve, I thought it would be cool to do 10 songs about love, but specifically not of the "Three times a wonderful lady in red tonight" variety, which would inevitably result in a return of my puking fits:-
1 Couldn't love you more - John Martyn
2 Your love gets sweeter every day - Finlay Quaye
3 Do I love you (indeed I do) - Frank Wilson
4 Always - Leonard Cohen
5 Pledging my love - Marvin Gaye and Diana Ross
6 Perfect world - Kate Campbell
7 If - The Divine Comedy
8 Into my arms - Nick Cave and The Bad Seeds
9 You send me - Sam Cooke
10 Can I sleep in your arms tonight - Carl Bozulich
RP
PS Latest update on flap front - Rick will need a further operation, probably on Monday. The latest cunning plan to fix the hole in the flap is to re-open his jaw (apparently the bone won't have healed fully yet so it will be a simple matter of taking out a couple of screws and levering the bone apart!), filling in the hole with muscle from the back of the flap (which as it has come from Rick's chest will have an abundant supply of muscle), stitching that in place and Bob's your uncle. After about 10 days the muscle will resemble the rest of the lining in his mouth so no-one will know the difference - that is assuming the muscle will stay in place for 10 days...
Here's hoping
Catherine
PPS I did like typing todays blog!
Thursday 15 July 2010
Another day in paradise
Wednesday 14th July 4.30pm
Before I came into hospital, I didn't update the blog everyday, but I've just been instructed by She-Who-Must-Be-Obeyed that I have to give my expectant public an update, mainly so she can read the newspaper rather than indulge in the one-way conversations which visiting time inevitably entails.
So what to tell? Well, as far as I'm concerned, things are definitely on the mend. Look ma - no tubes! Also, most of the stitches and staples have gone, and I'm feeling pretty chipper. I've embarked on the essential physiotherapy which will restore my physique to its former glory. Ralph/Rafa/Linda the flap seems to be behaving himself/herself, so everything is cool just now.
By the way, I had no idea you blogettes were such a mercenary bunch. The majority of you seem to be refusing to participate in the "name-the-flap" competition until you know the prize. Well, I haven't decided yet: suffice to say, it will not be wealth beyond compare. Maybe the tooth they knocked out in my last operation? In any case, I'll announce the winner in due course.
Catherine and I received a nice visit earlier, from a chap called Ben, who went through a similar ordeal to me a couple of years ago, and has come out of it smiling and even "enriched" by the experience. Ben is evidence that in spite of the sheer bloody misery of the treatment, it can be all right in the end. Unfortunately, he's better looking after his operation than I was before mine, so I fear that comparisons on our respective appearances may be misleading.
Nevertheless, it was really good of him to drop in, and to talk to someone who really knows what I've been going through, and what's still to come. Apparently, radiotherapy is going to be horrible, but at least forewarned is forearmed.
My main concern just now after such an extended stay is that I may become institutionalised, so here are ten songs on that subject:-
1 St James' Infirmary - Jack Teagarden
2 Fulsom prison blues - Johny Cash
3 If these old walls could speak - Nanci Griffith
4 I don't want to go home - Southside Johny and the Ashbury Jukes
5 My old school - Steely Dan
6 These four walls - Shawn Colvin
7 The walls of red wing - Bob Dylan
8 Christmas in prison - John Prine
9 I shall be released - Bob Dylan
10 Relaxin' at the Touro - Muggsy Spanier (suggested by my dad)
I'm not staying
RP
Before I came into hospital, I didn't update the blog everyday, but I've just been instructed by She-Who-Must-Be-Obeyed that I have to give my expectant public an update, mainly so she can read the newspaper rather than indulge in the one-way conversations which visiting time inevitably entails.
So what to tell? Well, as far as I'm concerned, things are definitely on the mend. Look ma - no tubes! Also, most of the stitches and staples have gone, and I'm feeling pretty chipper. I've embarked on the essential physiotherapy which will restore my physique to its former glory. Ralph/Rafa/Linda the flap seems to be behaving himself/herself, so everything is cool just now.
By the way, I had no idea you blogettes were such a mercenary bunch. The majority of you seem to be refusing to participate in the "name-the-flap" competition until you know the prize. Well, I haven't decided yet: suffice to say, it will not be wealth beyond compare. Maybe the tooth they knocked out in my last operation? In any case, I'll announce the winner in due course.
Catherine and I received a nice visit earlier, from a chap called Ben, who went through a similar ordeal to me a couple of years ago, and has come out of it smiling and even "enriched" by the experience. Ben is evidence that in spite of the sheer bloody misery of the treatment, it can be all right in the end. Unfortunately, he's better looking after his operation than I was before mine, so I fear that comparisons on our respective appearances may be misleading.
Nevertheless, it was really good of him to drop in, and to talk to someone who really knows what I've been going through, and what's still to come. Apparently, radiotherapy is going to be horrible, but at least forewarned is forearmed.
My main concern just now after such an extended stay is that I may become institutionalised, so here are ten songs on that subject:-
1 St James' Infirmary - Jack Teagarden
2 Fulsom prison blues - Johny Cash
3 If these old walls could speak - Nanci Griffith
4 I don't want to go home - Southside Johny and the Ashbury Jukes
5 My old school - Steely Dan
6 These four walls - Shawn Colvin
7 The walls of red wing - Bob Dylan
8 Christmas in prison - John Prine
9 I shall be released - Bob Dylan
10 Relaxin' at the Touro - Muggsy Spanier (suggested by my dad)
I'm not staying
RP
Wednesday 14 July 2010
Sisters (and brothers) of mercy
Tuesday 13th July 3pm
Something I've noticed during my prolonged stay in the sanatorium. All nurses talk to themselves. It can be a bit disconcerting if, when the sister is tending to a particularly delicate dressing, she pauses, frowns, and says something like "how did that happen?"
Since I've been here, I've had a few "Oh my God"s or just "Oh"s, and some mindless chitter-chatter, as if they're just composing their shopping lists. The worrying part is when the one-way conversation takes on a self-instruction direction, as if nursey is constructing an airfix kit, rather than doing something potentionally life-saving (or threatening) with the prone patient's body.
A few of them like a good tune, too - sometimes a current smash from the hit parade, but I swear that it wasn't just the drugs that made me hear one of them giving a rendition of Middle of the Road's 1970's hit "Chirpy Chirpy Cheep Cheep" a few days ago. The most distressing warbling is when someone occasionally chooses a gospel tune of the "Going up to meet my Lord" variety.
Anyway, I'm still here, aren't I? So why should I complain.
And actually, I have very few causes for complaint about the care I've received from the nurses. As in any profession, I've come across good, bad and indifferent, with the good far outnumbering the latter two. For the most part, the nurses who have worked with me have been resolutely cheerful, sympathetic and incredibly competent.
I'm not going to name names, but a stay in hospital for a wuss like me can be a daunting experience, and my fear, pain and panic have been alleviated especially by two or three wonderfully sympathetic people.
Being where I am, I can't research the sort of wages these people are on, but I suspect it's considerably less than I, or most of the people who read this blog, earn. And yet they routinely do all sorts of nasty, messy tasks which I would not contemplate for any amount of money. They keep you clean and safe and to the best of their abilities keep you smiling.
So here are ten songs in praise of nurses:-
1 Sister of mercy - Leonard Coen
2 Take off your uniform - |Joh Hiatt
3 Help me make it through the night - Kris Kristofferson
4 Angel - Aretha Franklin
5 Cup of kindness - EmmyLou Harris
6 Oh, Sister - Bob Dylan
7 There, there, my dear - Dexy's Midnight Runners
8 Angel of the morning - Bettye Swann
9 Someone saved my life tonight - Elton John
10 Night nurse - Gregory Isaacs (yes, I know it's a repeat)
In good hands
RP
Something I've noticed during my prolonged stay in the sanatorium. All nurses talk to themselves. It can be a bit disconcerting if, when the sister is tending to a particularly delicate dressing, she pauses, frowns, and says something like "how did that happen?"
Since I've been here, I've had a few "Oh my God"s or just "Oh"s, and some mindless chitter-chatter, as if they're just composing their shopping lists. The worrying part is when the one-way conversation takes on a self-instruction direction, as if nursey is constructing an airfix kit, rather than doing something potentionally life-saving (or threatening) with the prone patient's body.
A few of them like a good tune, too - sometimes a current smash from the hit parade, but I swear that it wasn't just the drugs that made me hear one of them giving a rendition of Middle of the Road's 1970's hit "Chirpy Chirpy Cheep Cheep" a few days ago. The most distressing warbling is when someone occasionally chooses a gospel tune of the "Going up to meet my Lord" variety.
Anyway, I'm still here, aren't I? So why should I complain.
And actually, I have very few causes for complaint about the care I've received from the nurses. As in any profession, I've come across good, bad and indifferent, with the good far outnumbering the latter two. For the most part, the nurses who have worked with me have been resolutely cheerful, sympathetic and incredibly competent.
I'm not going to name names, but a stay in hospital for a wuss like me can be a daunting experience, and my fear, pain and panic have been alleviated especially by two or three wonderfully sympathetic people.
Being where I am, I can't research the sort of wages these people are on, but I suspect it's considerably less than I, or most of the people who read this blog, earn. And yet they routinely do all sorts of nasty, messy tasks which I would not contemplate for any amount of money. They keep you clean and safe and to the best of their abilities keep you smiling.
So here are ten songs in praise of nurses:-
1 Sister of mercy - Leonard Coen
2 Take off your uniform - |Joh Hiatt
3 Help me make it through the night - Kris Kristofferson
4 Angel - Aretha Franklin
5 Cup of kindness - EmmyLou Harris
6 Oh, Sister - Bob Dylan
7 There, there, my dear - Dexy's Midnight Runners
8 Angel of the morning - Bettye Swann
9 Someone saved my life tonight - Elton John
10 Night nurse - Gregory Isaacs (yes, I know it's a repeat)
In good hands
RP
Tuesday 13 July 2010
Time passes slowly
Monday 12 July, 11am
Never again will I moan about having to go to work on a Monday morning. As I enter week 4 of my scheduled 2-week break, there's still no imminent prospect of departure.
On the positive side, the flap in my mouth is healthy; I am now free of drains and drips; and the doctors say I'm making "steady progress".
On the other hand, the flap resolutely refuses to affix itself securely to my palate, which can only be cured with time; at least another week in hospital apparently. Also, I keep getting unexpected retching fits, such as last night, when I spent the evening honking and crying, my dear wife holding my hand and offering encouragement, when I should have been watching the World Cup Final.
This place is such a bubble that all I've been able to confirm is that Spain won the World Cup; but not the score, or whether Everton's Johny Heitinga put in a distinguished performance.
Here are some things to look forward to over the next few days:
- I'm going to have my tracheostomy removed. That is to say, providing I can breathe when they close the damn thing off, it'll be removed. This is something I'm anticipating with a great deal of pleasure and fear. Pleasure, because I'll finally be able to start eating, drinking and speaking again; fear, because all previous attempts to do so have resulted in failure due to my inability to breathe. The estimable Dr Dilkes says "we never have any problems" but Phil the Nurse tells me it could take 3-4 days to wean me off the tracheostomy.
- I'm going to undergo - again - the "swallow test", which involves me drinking a cup of blue dye, in front of a group of observers, looking for leaks in my neck
- Games of musical beds. A number of patients were moved from the ward yesterday, due - according to staff - to financial cutbacks. This morning, half the ward has been converted to a building site, as a bunch of workmen are putting in new windows. It seems they'll move to my end of the ward tomorrow, so at least I should get a change of scenery.
Before I go, I have another piece of homework for you dedicated blog followers. As it now seems that flap no.2 is here to stay (fingers crossed), I think we should give it a name. This, remember, is a piece of my puny chest which has been relocated to the back of my mouth where it feels rather more substantial. The best suggestion will get a prize yet to be decided.
Today's ten songs are about time passing slowly:-
1 Wastin' time - Ron Sexsmith
2 Waiting at the station - Neville Brothers (suggestd by Phil the Nurse)
3 Waitin' in vain - Bob Marley and The Wailers
4 We have all the time in the world - Louis Armstrong
5 Longest time - Bill Joel
6 Desperadoes waiting for a train - Guy Clark
7 The rest of my life - Dan Penn
8 All day and all of the night - The Kinks
9 Waitin' for my man - Velvet Underground
10 100 days, 100 nights - Ruth Jones and the Dap Kings
Hangin' Around
RP
Never again will I moan about having to go to work on a Monday morning. As I enter week 4 of my scheduled 2-week break, there's still no imminent prospect of departure.
On the positive side, the flap in my mouth is healthy; I am now free of drains and drips; and the doctors say I'm making "steady progress".
On the other hand, the flap resolutely refuses to affix itself securely to my palate, which can only be cured with time; at least another week in hospital apparently. Also, I keep getting unexpected retching fits, such as last night, when I spent the evening honking and crying, my dear wife holding my hand and offering encouragement, when I should have been watching the World Cup Final.
This place is such a bubble that all I've been able to confirm is that Spain won the World Cup; but not the score, or whether Everton's Johny Heitinga put in a distinguished performance.
Here are some things to look forward to over the next few days:
- I'm going to have my tracheostomy removed. That is to say, providing I can breathe when they close the damn thing off, it'll be removed. This is something I'm anticipating with a great deal of pleasure and fear. Pleasure, because I'll finally be able to start eating, drinking and speaking again; fear, because all previous attempts to do so have resulted in failure due to my inability to breathe. The estimable Dr Dilkes says "we never have any problems" but Phil the Nurse tells me it could take 3-4 days to wean me off the tracheostomy.
- I'm going to undergo - again - the "swallow test", which involves me drinking a cup of blue dye, in front of a group of observers, looking for leaks in my neck
- Games of musical beds. A number of patients were moved from the ward yesterday, due - according to staff - to financial cutbacks. This morning, half the ward has been converted to a building site, as a bunch of workmen are putting in new windows. It seems they'll move to my end of the ward tomorrow, so at least I should get a change of scenery.
Before I go, I have another piece of homework for you dedicated blog followers. As it now seems that flap no.2 is here to stay (fingers crossed), I think we should give it a name. This, remember, is a piece of my puny chest which has been relocated to the back of my mouth where it feels rather more substantial. The best suggestion will get a prize yet to be decided.
Today's ten songs are about time passing slowly:-
1 Wastin' time - Ron Sexsmith
2 Waiting at the station - Neville Brothers (suggestd by Phil the Nurse)
3 Waitin' in vain - Bob Marley and The Wailers
4 We have all the time in the world - Louis Armstrong
5 Longest time - Bill Joel
6 Desperadoes waiting for a train - Guy Clark
7 The rest of my life - Dan Penn
8 All day and all of the night - The Kinks
9 Waitin' for my man - Velvet Underground
10 100 days, 100 nights - Ruth Jones and the Dap Kings
Hangin' Around
RP
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