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
Wednesday 24 November 2010
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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