Hello
I am occasionally admonished by Catherine and others for my lackadaisical approach to updating my blog. It's partly, but not entirely, due to laziness. It's also because I have reached a stage in my recovery when not much happens: my life at the moment is unremittingly mundane, and long may it remain so.
Nevertheless, the boss has spoken, and who am I to argue? I will try to maintain your interest, but if you read this stuff looking for pain and suffering, I fear you will be disappointed. Move onto another web site, go and update your Facebook account or something. I hope and believe that the horrors are well and truly behind me, and now it's just a matter of getting better.
Anyway, as far as my current condition is concerned, I'm afraid the non-malignant hole in my chin has still not healed, after six weeks. This is what's preventing me from learning how to eat and drink again, so it's intensely frustrating. We've recently decided to experiment with Mannuka honey dressings, which I'm told have an excellent healing effect, although I'm not sure that there's total consensus among the medical fraternity. Maybe it's just an expensive con, but worth a try, we think. The hole is so tiny as to be almost invisible, but it's still there. We're keeping our fingers crossed that the honey will be the magic ingredient to close the gap completely.
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I've recently been speaking to some old friends and have been struck by the impact my blog has had upon them. They've used words like "humbling" and "inspiring", and I've even been described as brave. Blimey! I don't think I've ever been used as an example for others, unless you count the times when mothers have pointed at me in the street and warned their children, "that's how you'll end up if you don't stop playing with yourself".
If you enjoy reading the blog, then I'm happy. That's partly what it's here for. But I don't recognise myself in some of the very positive feedback I've been getting. I definitely don't consider myself brave. All through the treatment, I've just followed orders, often with fear and trepidation. What else can you do? And for those of you who have commented on my seemingly positive attitude, let me assure you that's just the bit you see from the blog. There have been times when I have been a quivering, weeping bundle of negativity.
Sorry if I seem to be labouring this point, but I wouldn't want to raise false expectations for the next time we meet. I'm still the same old inadequate wretch that I always was, just a little uglier from the surgery.
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As I am pinning my hopes on the healing powers of Mannuka, here are ten songs about honey.
1. Honey - Bobby Goldsboro
2. Honey For The Bees - Alison Moyet
3. Sweeter Than Honey - Southside Johnny & The Asbury Jukes
4. Honey On His Hands - Jeanne Pruette
5. Honey Chile - Martha Reeves & The Vandellas
6. Money Honey - Elvis Presley
7. Honey Pie - The Beatles
8. Honey Hush - Big Joe Turner
9. Honeydoo - Dan Bern
10. Honey Honey - Abba
Sweet!
RP
Monday, 24 January 2011
Monday, 10 January 2011
Drinking Sensibly
Greetings, and a belated Happy New Year
Another slapped wrist for me, for neglecting my blogging duties. In the weeks since my last missive, we've had Christmas and New Year, and I've had a birthday. But the hole in my chin remains, although I'm reliably informed that it's getting smaller.
So how was the festive season for you? Ours was nice: we spent the Christmas period at my Dad's place in Bognor, and descended on my brother Dave for Christmas lunch. As for oral intake, I'm afraid that my role was mainly confined to watching others chewing and slurping, but it was all very pleasant anyway.
We were back home for New Year, and had a relatively quiet time, with a few friends round for the evening. Flaunting medical advice, I actually consumed some alcohol! Champagne and all proper drinks still being too harsh for my palate, I opted for some Sainsbury's Pink Fizz. This is a beverage presented in a sparkling wine bottle, the label of which describes it as an "aromatised wine product cocktail". It comprises some non-descript Chenin Blanc wine mixed with hibiscus flower extract, and comes in at a whopping 4% ABV. It's booze for pre-teens, or a Christmas tipple for teetotallers. Don't pitch up at a dinner party bearing a bottle of this stuff, or your host may rightly spit in your food.
Anyway, Sainsbury's Pink Fizz tasted okay to me, and I managed a couple of glasses
on New Year's Eve, with no ill effects other then the scorn of my family and friends, but I've not tried it since. The bottle stands forlorn in our fridge, untouched in 2011. We really ought to chuck it down the sink, but throwing away alcohol - even of such poor quality - goes against the grain, so it may still be there next New Years Eve.
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In my idle moments over the festive period, I've been looking back at earlier blogs, and I've been struck by how unprepared I was for the ordeal ahead of me. I'm not sure whether this was because the medical professionals didn't tell me straight, or whether I chose not to hear the truth.
In the early postings, I was assuming that it would all be sorted within a matter of a few weeks, and even when it was decided that they would be butchering my face, I was expecting everything to be back to normal within six months: the eternal optimist!
I also told the world that I would be in hospital for two weeks. How was I to know that there would be complications and further operations, which kept me inarcerated for over six weeks, from late June to early August? I anticipated having a tracheostomy for 4-7 days. In the event, I kept it for about 4 weeks!I also vastly underrated the sheer misery of chemo and radiotherapy.
With hindsight, I actually think it was no bad thing that I was so naive about what was in store for me: if I had known the truth, I would certainly not have entered the whole process in such a sanguine state of mind. On balance, now that the worst is behind me (fingers crossed), I'm glad that I didn't know in advance just how awful it was going to be.
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In the hope that I may one day be able to move on from Sainsbury's Pink Fizz, here are ten songs about sparkling wine.
1. Champagne Supernova - Oasis
2. Sparkling Wine - Red Sovine
3. A Glass Of Champagne - Sailor
4. Bubbly - Colbie Caillat
5. Drinking Champagne - Willie Nelson
6. No Sex In The Champagne Room - Chris Rock
7. Champagne Charlie - George Leybourne
8. Champagne Life - Ne-Yo
9. I Drink Sparkling Wine - Pjs & Art
10. Pink Fizz - Albert Marland
Cheers!
RP
Another slapped wrist for me, for neglecting my blogging duties. In the weeks since my last missive, we've had Christmas and New Year, and I've had a birthday. But the hole in my chin remains, although I'm reliably informed that it's getting smaller.
So how was the festive season for you? Ours was nice: we spent the Christmas period at my Dad's place in Bognor, and descended on my brother Dave for Christmas lunch. As for oral intake, I'm afraid that my role was mainly confined to watching others chewing and slurping, but it was all very pleasant anyway.
We were back home for New Year, and had a relatively quiet time, with a few friends round for the evening. Flaunting medical advice, I actually consumed some alcohol! Champagne and all proper drinks still being too harsh for my palate, I opted for some Sainsbury's Pink Fizz. This is a beverage presented in a sparkling wine bottle, the label of which describes it as an "aromatised wine product cocktail". It comprises some non-descript Chenin Blanc wine mixed with hibiscus flower extract, and comes in at a whopping 4% ABV. It's booze for pre-teens, or a Christmas tipple for teetotallers. Don't pitch up at a dinner party bearing a bottle of this stuff, or your host may rightly spit in your food.
Anyway, Sainsbury's Pink Fizz tasted okay to me, and I managed a couple of glasses
on New Year's Eve, with no ill effects other then the scorn of my family and friends, but I've not tried it since. The bottle stands forlorn in our fridge, untouched in 2011. We really ought to chuck it down the sink, but throwing away alcohol - even of such poor quality - goes against the grain, so it may still be there next New Years Eve.
-------------------------------------------------------------------------------
In my idle moments over the festive period, I've been looking back at earlier blogs, and I've been struck by how unprepared I was for the ordeal ahead of me. I'm not sure whether this was because the medical professionals didn't tell me straight, or whether I chose not to hear the truth.
In the early postings, I was assuming that it would all be sorted within a matter of a few weeks, and even when it was decided that they would be butchering my face, I was expecting everything to be back to normal within six months: the eternal optimist!
I also told the world that I would be in hospital for two weeks. How was I to know that there would be complications and further operations, which kept me inarcerated for over six weeks, from late June to early August? I anticipated having a tracheostomy for 4-7 days. In the event, I kept it for about 4 weeks!I also vastly underrated the sheer misery of chemo and radiotherapy.
With hindsight, I actually think it was no bad thing that I was so naive about what was in store for me: if I had known the truth, I would certainly not have entered the whole process in such a sanguine state of mind. On balance, now that the worst is behind me (fingers crossed), I'm glad that I didn't know in advance just how awful it was going to be.
-------------------------------------------------------------------------------
In the hope that I may one day be able to move on from Sainsbury's Pink Fizz, here are ten songs about sparkling wine.
1. Champagne Supernova - Oasis
2. Sparkling Wine - Red Sovine
3. A Glass Of Champagne - Sailor
4. Bubbly - Colbie Caillat
5. Drinking Champagne - Willie Nelson
6. No Sex In The Champagne Room - Chris Rock
7. Champagne Charlie - George Leybourne
8. Champagne Life - Ne-Yo
9. I Drink Sparkling Wine - Pjs & Art
10. Pink Fizz - Albert Marland
Cheers!
RP
Wednesday, 15 December 2010
Pheeewwweeeeeeeee!
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
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
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
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