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
Tuesday 31 August 2010
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
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