Through our reading it had become clear that there are many alternative approaches to fighting cancer beyond those available through the National Health Service. The range of treatments is astonishing. There are various medications based on herbal ingredients, there are immunizations, there are dietary supplements, you can be baked till your temperature reaches 107F - a temperature that cancer cells cannot survive; and this is just a start.
I wanted advice about how to reduce the impact of the radio-therapy and so survive it with the minimum discomfort. I also wondered whether there were other, more appropriate approaches to my treatment. So, last Tuesday we took the last, long drive in my trusty Alfa down to Bath. We had an appointment to see a well known doctor who has specialised in cancer treatment for over twenty years. Although (as I understand) she works as a normal GP her cancer patients are all seen privately.
The hour long appointment turned out to be a sales pitch for various dietary supplements and an Indian Aryuvedic herbal concoction - all of which could have been predicted from the web-site and Internet investigations. There was some useful information;
- there is a private doctor working in Bristol who runs tests that are much more sensitive than those used by the National Health. She can identify whether there is still cancer in the body and also identify which chemo agent is most effective. Again, "cutting edge" technology, not accepted by the National Health.
- I can protect myself against the worst of the radio-therapy side effects by using Aloe-Vera cream and mouthwash and also by taking zinc tablets.
- she also questioned whether radio-therapy was necessary at this time (hence the conversation about testing) or whether it could be delayed until it was clearly necessary.
This is a ghastly field to get involved with. If I just accept the National Health approach without question I will just get on with it, grin and bear it and accept whatever comes with the treatment. Once I began to discover that there are alternatives - which appear less damaging and traumatic than what the NHS wants to throw at me, I then have to start making judgements about which I trust more (which I had more faith in!) and faith does not come easily to me. So I'm caught in a dilemma somewhere between faith and hope.
The alternatives offer far more hope. They appear less damaging and traumatic; I will emerge with a better quality of life, I won't be damaged by unnecessary treatment - all this sounds great .... but
My faith in these approaches is reserved. None of these treatments has the NHS 'seal of approval'. Some are supported by very little scientific research, testing, publication or approval. There appears to be a medical sub-culture of doctors with expertise in the field who do not have the approval of the establishment. They know each other and cross-refer their patients and claim considerable success for the treatments they support both here and abroad. They remind patients that cutting edge medical practice can take as much as twenty years to be accepted by the NHS, a fact confirmed by conversations I have had with NHS doctors.
Their time and tests do not come cheap and whilst I do not put a price on my good health I have no wish to waste money. As a result of my visit to Doctor Bath we went straight out and spent a small pile on dietary supplements that are supposed to build up my immune system, increase my cancer fighting capability and ensure I have a complete and well balanced diet. Are they going to help? Does taking them mean I can avoid being zapped by the Dalek? I don't think so!
I could go and spend a bigger pile on having a blood test to see whether I still have cancer cells in my body. If I have - well Dalek treatment is well established, provided by the NHS and has a long history of success. But what if the result is negative and shows no cancer? Is the test reliable and trustworthy? Can I safely thumb my nose at the Dalek and tell him that I prefer Doctor Who? Can I turn my back on treatment feeling secure in a belief that the cancer has been dealt with?
I'm quite sure that those who have committed themselves to conventional therapy within the NHS would advise me strongly against this and I can not avoid the suspicion that sailing too close to the wind brings one closer to the charlatans and quacks. I'm in a vulnerable place looking for the very best and least traumatic treatment. I could end up being an easy source of ready cash for someone with few scruples. I am sure such people exist - but how does one spot them. Of course it is too late now for any treatment that could have dealt with the tumor in a less dramatic way. I can live with the results of the surgery, there is little pain, I can still speak and eat but I would rather have avoided it. It's too late now to wish I'd had better or more timely advice. But I don't want to make the same mistake again and live with two sets of regrets.
So, how should I view and use the expertise of these doctors and their alternative therapies? Should I be courageous and go for the new, cutting edge therapies hoping that they work and will effect a cure. Or should I stick with the standard, tried and tested approach and put up with the unpleasant side effects? Should I put my trust and faith in these alternative practitioners or should I listen to my native cynicism and regard them through a veil of suspicion? It's a tough call and one I'm really not qualified to make. I suspect I'll just grin and bear it ... but watch this space.
Sunday, 23 September 2007
Saturday, 22 September 2007
Getting worse is getting better..
Now that the surgery is over it's time to think about other things.
The first is recovery from the surgeon's knife. The infection that developed in my neck has cleared up and there is almost nothing left of what was a large hole. It seems safe now to record my fears of MRSA, septicemia and other hospital acquired infections. Those worries at least, are a thing of the past. The surgery has left me now with two areas of discomfort. The worst is my right hand. A circle of flesh was removed from my inside my wrist to patch into my cheek. Half the back of my hand and the back of my thumb are now superficially numb but beneath that are a constant tingling, pins and needles and coldness. It hasn't stopped me using my hand and at times I'm hardly aware of it. On other occasions the hand doesn't even feel as though it's a part of me. Fortunately I have normal feeling in the all my fingers and the front of my thumb. Everything moves and flexes almost normally so I can do most things and hopefully as swelling and bruising to nerves wears off, my hand will feel more normal again.
The second area is my mouth. I suppose it was inevitable that this was going to feel badly mauled. Not long after the surgery my mouth felt as though it had been kicked by a horse. Now that more feeling is coming back there is an almost permanent tingling in my left cheek and lip. Not as uncomfortable as my wrist but not a normal or natural feeling. I'm also more aware of how the shape of the inside of my mouth has changed and that's a bit unnerving! In a way I've only got half a working mouth. It's almost good enough, my speech is somewhat compromised, in particular it's difficult to roll my r's. Eating is difficult but getting easier. Things like cake and bread are the hardest as they get sticky in the mouth and hard to move around. As long as mouthfuls are small I can move lumps and chew quite easily but I do bite my tongue more often that I like. Again, it's hard to tell whether this will improve and get easier or whether I'll just have to learn to live with it. I may end up having another tooth removed as I can no longer use my left canines and these are the ones that catch my tongue. At least I'm on a solid diet and we're having to puree less and less. I've been out twice now for curries and had both Chinese and Thai takeaways - that's a lot better than being attached to a drip for twenty hours a day in order to avoid malnutrition.
Looming in the future is the radio-therapy. Having just got back to some degree of normality the Dalek is likely to send me back to 'Go' again. Effectively the ray gun just burns tissue and cancer cells. Very slowly and gently but the cumulative effect will be to burn and scar my mouth just as I'm beginning to use it properly again. There may be more scarring, there may be ulceration and swallowing could become more difficult. Of course, this could be the worst case scenario and I could 'breeze' through the treatment with only mild discomfort - I hope so!! Having met the Dalek nearly two weeks ago, I'm just waiting to hear from the hospital as to when treatment may begin. Radio-therapy is a kind of non-guaranteed insurance that hopes to get rid of any rogue cancer cells that made a dash for freedom before they were cut out by the surgeon. The daft thing is that no-one can tell whether there are any just camping out any waiting to multiply madly. If there are, no-one knows how many there are or where they are. So Dalek zapping is a bit of a shot in the dark and there's no-way of telling whether it's necessary or not. The natural consequence of this is that there is no way of telling whether the zapping has been effective or even done any good at all. I just have to wait and see whether anything else develops in the future. At least, that's what the mainstream docs seem to be telling us.
Once again, to get a different view you have to go outside the National Health so the next exciting entry will tell you about our visit to Bath.
The first is recovery from the surgeon's knife. The infection that developed in my neck has cleared up and there is almost nothing left of what was a large hole. It seems safe now to record my fears of MRSA, septicemia and other hospital acquired infections. Those worries at least, are a thing of the past. The surgery has left me now with two areas of discomfort. The worst is my right hand. A circle of flesh was removed from my inside my wrist to patch into my cheek. Half the back of my hand and the back of my thumb are now superficially numb but beneath that are a constant tingling, pins and needles and coldness. It hasn't stopped me using my hand and at times I'm hardly aware of it. On other occasions the hand doesn't even feel as though it's a part of me. Fortunately I have normal feeling in the all my fingers and the front of my thumb. Everything moves and flexes almost normally so I can do most things and hopefully as swelling and bruising to nerves wears off, my hand will feel more normal again.
The second area is my mouth. I suppose it was inevitable that this was going to feel badly mauled. Not long after the surgery my mouth felt as though it had been kicked by a horse. Now that more feeling is coming back there is an almost permanent tingling in my left cheek and lip. Not as uncomfortable as my wrist but not a normal or natural feeling. I'm also more aware of how the shape of the inside of my mouth has changed and that's a bit unnerving! In a way I've only got half a working mouth. It's almost good enough, my speech is somewhat compromised, in particular it's difficult to roll my r's. Eating is difficult but getting easier. Things like cake and bread are the hardest as they get sticky in the mouth and hard to move around. As long as mouthfuls are small I can move lumps and chew quite easily but I do bite my tongue more often that I like. Again, it's hard to tell whether this will improve and get easier or whether I'll just have to learn to live with it. I may end up having another tooth removed as I can no longer use my left canines and these are the ones that catch my tongue. At least I'm on a solid diet and we're having to puree less and less. I've been out twice now for curries and had both Chinese and Thai takeaways - that's a lot better than being attached to a drip for twenty hours a day in order to avoid malnutrition.
Looming in the future is the radio-therapy. Having just got back to some degree of normality the Dalek is likely to send me back to 'Go' again. Effectively the ray gun just burns tissue and cancer cells. Very slowly and gently but the cumulative effect will be to burn and scar my mouth just as I'm beginning to use it properly again. There may be more scarring, there may be ulceration and swallowing could become more difficult. Of course, this could be the worst case scenario and I could 'breeze' through the treatment with only mild discomfort - I hope so!! Having met the Dalek nearly two weeks ago, I'm just waiting to hear from the hospital as to when treatment may begin. Radio-therapy is a kind of non-guaranteed insurance that hopes to get rid of any rogue cancer cells that made a dash for freedom before they were cut out by the surgeon. The daft thing is that no-one can tell whether there are any just camping out any waiting to multiply madly. If there are, no-one knows how many there are or where they are. So Dalek zapping is a bit of a shot in the dark and there's no-way of telling whether it's necessary or not. The natural consequence of this is that there is no way of telling whether the zapping has been effective or even done any good at all. I just have to wait and see whether anything else develops in the future. At least, that's what the mainstream docs seem to be telling us.
Once again, to get a different view you have to go outside the National Health so the next exciting entry will tell you about our visit to Bath.
Monday, 10 September 2007
Hard Graft
To the tune of 'Dem bones'.
Well the cheek flap's connected to the wrist graft,And the wrist graft's connected to the tummy tuck,
And that's the way of the cure."A week after being released for hospital I went back to have the dressing removed from my wrist graft. Again it was held in place by metal staples and a scar went all the way up my arm to the inside of my elbow where some artery had been removed. Slowly the bandage, the padding and then the foam 'pressure dressing' were removed. The graft had not been looked at for more than three weeks as it needed constant pressure to ensure that it took and that new blood vessels grew into it so that it would become part of my arm rather than just a surface dressing. The medical staff were delighted when finally they saw what had been hidden. The graft was perfect, it had taken all round without any patches of weakness. In fact it was so good that they wanted to take photos of it to be used for educational purposes. Unsurprisingly in this day and age, I had to sign a release form to give my permission and to forgo any royalties. I was still not allowed to flex or bend it, not to carry anything heavy nor drive. I had a lighter dressing put on just to act as a reminder that it was still not right.
Two days later I was back in hospital again. The community nurse had expressed a little concern about one of the wounds in my neck. It was a bit red and a bit swollen so she suggested that I should go back to see the doctors in hospital. One phone call and two hours later I was back in the consulting rooms having needles stuck in my neck, samples of fluid extracted for analysis and prescriptions written for antibiotics. Satisfied that everything was now under control, I was sent home to continue recovery and self-medicate.
The following morning Elaine was even more concerned. My neck was more swollen and tight. Even so I did not feel ill nor have any sign of a temperature but when the nurse came she was sufficiently concerned to suggest that I should go back to the hospital again. So, on Friday afternoon I was back in the consulting rooms again with the doctor muttering that my neck did not look too good. He peeled back the dressing and we all got the shock of our lives when a considerable amount of fluid that looked like cream of tomato soup but smelt of dog-shit, came gushing out. I didn't look to see how much but I did feel the doc get two fingers into the hole to scoop out any remaining gunk.
"You'll have to stay in," he said and so my second weekend in hospital began. I was on I.V. drips of antibiotics three times a day in another single room. Unfortunately the entire communication/entertainment unit was not working so I had no TV, no Internet, no games and only my own transistor radio for company. I did a lot of reading!! By Monday the wound was beginning to heal and the infection was under control so I was allowed out but under instructions not to drive and still to avoid any heavy lifting. At least the Rugby world cup was about to start and the seven one day games against India were underway. There was something to focus on and think about.
The next day, Tuesday, was the second training day for those who were returning to teaching this year. It was held at school. Around lunch-time Elaine chauffeured me to Droitwich and we called in to see friends and colleagues. We had a good time catching up, enquiring about peoples' holidays and catching up on news. It was good to be able to show friends that I was well and recovering and still the same old person they had known just a few weeks before. We talked and talked and talked and instead of staying for the half-hour planned we were there for two hours at least. The rest of the week went in a daze of listening to cricket, seeing the district nurse, taking antibiotics and falling asleep. By Saturday night we were both so tired that we went out to get a take-away, my first non home-cooked food. A local pub has recently opened a Thai restaurant - just a five minute drive away. I managed to eat it although I was slow but the Yellow Thai Chicken Curry with Vegetable Fried Rice was excellent. I was not allowed wine as I was still on antibiotics but even so, this was a big treat.
The following Tuesday and we were back at the hospital again, this time for an appointment. The dressing was removed from my wrist graft and not replaced. There are still dozens of stitches in it but I am told that they are self dissolving and will come out by themselves in time. I had two stitches removed from the front of my lip - these were catching on food, towels and tissues when I wiped my mouth and so were a bit uncomfortable. The docs said I was OK to drive; I met the speech therapist who said I was making wonderful progress and really had no need of her expertise; the nutritionalist came and made new arrangements regarding my liquid diet and then it was a question of waiting to meet the Dalek from Cheltenham.
After another long wait he came rolling in and told us what he felt he needed to do. As expected, he would zap my cheek and the left side of my neck hoping to exterminate any nasty little cancer cells that had escaped the lymph nodes and were now just waiting to reproduce like rabbits in my neck. Just to be sure he was also going to zap the right had side of my neck as well. It would take five weeks or twenty-five sessions. The first two weeks would be fine, the third week will start getting uncomfortable, the fourth and fifth weeks are likely to be unpleasant with sore (burnt) throat, ulcers in the mouth, a swollen tongue and 'sun'burnt cheeks. My 'olive' skin may offer some protection against the burning but no-body can say how any individual will react. Analgesia will be available as well as creams to help the skin recover. When it's all over I will probably not grow a beard in the radiated areas although I will need to shave the rest, the treated area will remain photo-sensitive and so I'll have to slap on sunblock before going out on sunny, summer days and my jaw bone and skin will find it harder to heal after any injury - I'll have to be careful. Elaine has done some Internet research about getting through this as easily as possible and next Tuesday we're off to Bath to see a complimentary doctor who specialises in cancer. I hope she may be able to suggest ways both to deal with the radiotherapy but also to approach life after treatment to ensure the minimum chance of the cancer returning. The fact that she is also a GP gives me some confidence that this is more that just blatant quackery.
Just as we were about to leave I asked again about exercises to help open my mouth wider. The exercise kit ordered had still not arrived so in best Professor Branestawm manner the butcher asked for a box of wooden 'Tongue Depressants". He took out eight and, having asked me to open my mouth, slid them (just) between my teeth. Then another one was taken from the box and it was inserted in the middle of the first eight and slid in stretching my gape just a little more. "Do this three times a day and keep them in place for thirty seconds," I was told. So this looks like a new exercise regime for the foreseeable future. I suppose I will stop when I can bite an apple or take a mouthful of melon but I expect it will be a long, slow process.
Two hours later we finally got out of the hospital and I drove. Before I went in we were looking at changing the car and so we now picked up where we left off. We'd been looking at a Kia Sportage small 4x4. The only other vehicle in the frame was a Honda CRv. These two are very similar in many ways. From appearance to equipment, size, tax, performance, emissions and more they almost like non-identical twins. Ultimately we went back to our first criteria - comfort. The Honda shaded it on this as it did, just, on noise levels. I had also read one comment on the Internet that claimed that Kia owners reported a number of worries regarding the transmission and air-conditioning. So we negotiated £800 off the windscreen price of a Honda and got a reasonable trade-in on my Alfa 145. So my recovery is benefiting from a little bit of retail therapy, our budget will benefit from lower fuel and road tax costs and next Thursday we'll be the happy owners of a new vehicle.
Today is the birthday of one of our closest friends. As we often did 'pre-cancer' we'll meet up this evening at a local Indian restaurant for a curry - my first meal out since hospital. I hope I'll manage and enjoy it even if, as I expect, I'll be a bit slow on the eating.
Well, that's it for now. It's taken me a long time to get round to recording this. I've either been in the garden or test-driving cars, watching rugby, cricket or football or falling asleep. But now, in GWB's famous words, "Job Done". There will be more to add so watch this space but don't hold you breath.
Ron
Saturday, 25 August 2007
Poker with Izod
Every month a group of my (now ex) colleagues meet up at one or others' house for a home cooked meal and a game of poker. They take the money they would normally spend on a night out and put it in the pot for a poker game. By all accounts they have a great evening and balanced out over a year or so most of them find they have won as much as they have lost.
I've never attended. I'm not a dedicated gambler and have never regarded it as a form of entertainment worth paying for but recognise I could be wrong in this. Several friends and relatives view a holiday in Las Vegas as much more fun than spending several hours underwater, watching fish, every day. On the odd occasion when I have played a machine or laid a winning bet I've been only too sure that my luck won't repeat again so I've taken my money and run.
On my last evening in hospital the Worcester butcher came to see me together with the specialist nurse. They'd received the pathology report. Elaine was down in the cafe as I'd been eating my evening meal in my room and she'd left me to it but the butcher started straight in. He'd excised the entire tumour and a margin of healthy tissues all around and below it. He was entirely confident that my cheek was now healthy with no tumour tissue left in my mouth. He'd also removed sixty lymph nodes from under my jaw and in my neck. This was a personal best! The most he'd ever removed before was fifty-six, or maybe fifty-seven. Of these sixty only four showed evidence of cancerous cells. All four were just under my jaw bone showing the earliest stages of spread as the cancer spreads slowly down the neck through the lymph system. As the nodes collect cancer cells they 'fill up' and some glands can show signs of 'escape'. Of my four affected lymph glands one shows this tendency.
Over the years the medics have drawn a line between those patients who need follow up treatment and those who do not. Follow-up treatment is normally radio-therapy (or being zapped by a Dalek). There is nothing pleasant about this. For the first two or three weeks you are hardly aware of anything happening although you may get increasingly tired as the rays zap the energy out of you. But you have to go every day (although you do get the weekends off). Fortunately NHS transport is available for this as our nearest Dalek lives in Cheltenham. A door-to door service apparently. About 3 weeks in you start to suffer from zap-burn which is a bit like sun-burn. A skin cream is provided to sooth this and I am told that olive skin like mine which does not burn easily in the sun, may offer some protection. After that the inside of the mouth may begin to blister and ulcerate, the tongue may become swollen and generally the mouth becomes uncomfortable and painful. The rays can also damage the bone of the jaw and the tissue structure. They kill off the hair follicles - so I won't need to shave my left cheek again but also the salivary gland in the same cheek. Fortunately the right cheek will be protected and so saliva output should still be sufficient to avoid the dreaded 'dry-mouth'. I really don't fancy meeting the Dalek.
The line the medics draw between needing zap treatment or not is more than three affected lymph nodes or having just one where there are signs of 'escape'. I qualify, just, on both grounds. It took the Worcester butcher a good five minutes or more to get round to this. Again I was considering a murder defence on the grounds of incoherent incompetence and scientific obfuscation when I was told that Dalek treatment was "strongly recommended".
"Oh shit!" I thought. "Shit, shit, shit, shit, shit!!" I couldn't believe that I was so unlucky as to have put just a toe over the line. Just one gland less - if it had been the right one - and I would have escaped the Dalek and his zap-ray. Just my bad luck. Is it any wonder that I don't play poker?
Elaine returned and we recapped all the information we had just gone over. The precise details of the zap treatment will be left to the Dalek but as everything has probably been removed there is no immediate rush, they will give my mouth some time to recover first and the treatment will start in three or four weeks or so. I may need my mouth zapped or my neck or both. It may last four weeks or as many as seven. Some people breeze through with very few side effects, others find it unbearable and cannot complete the course of treatment. Then the butcher left us together, with the good news that I could go home tomorrow.
Of course, there were people to contact and give the news to. Father, friends, sister and so on. During the course of conversations I came to realise that there was another point of view. It may be three or four weeks of suffering when eating may prove almost impossible (I will still have the feeding tube in my stomach to inject food drinks through) BUT it will make it a 'Belt and Braces' treatment. On my last day in hospital I met a man who had had surgery a year ago for oesophageal cancer. They had reconstructed his oesophagus by using part of his small intestine but it hadn't worked properly and something had blocked up causing him to become anaemic, loose weight and generally spend most of the last year in or visiting hospital. He was back today to be admitted for more surgery. I certainly hope to avoid that level of familiarity with the nursing staff!
So perhaps I'm not unlucky after all. Perhaps my 'bad luck' is actually good luck in disguise. Maybe what I'd hoped for was actually the worst possible option and what I'd feared was actually the best. I can't tell whether I'm lucky or unlucky as I can't tell the difference any more. Is it any wonder that I don't play poker?
I've never attended. I'm not a dedicated gambler and have never regarded it as a form of entertainment worth paying for but recognise I could be wrong in this. Several friends and relatives view a holiday in Las Vegas as much more fun than spending several hours underwater, watching fish, every day. On the odd occasion when I have played a machine or laid a winning bet I've been only too sure that my luck won't repeat again so I've taken my money and run.
On my last evening in hospital the Worcester butcher came to see me together with the specialist nurse. They'd received the pathology report. Elaine was down in the cafe as I'd been eating my evening meal in my room and she'd left me to it but the butcher started straight in. He'd excised the entire tumour and a margin of healthy tissues all around and below it. He was entirely confident that my cheek was now healthy with no tumour tissue left in my mouth. He'd also removed sixty lymph nodes from under my jaw and in my neck. This was a personal best! The most he'd ever removed before was fifty-six, or maybe fifty-seven. Of these sixty only four showed evidence of cancerous cells. All four were just under my jaw bone showing the earliest stages of spread as the cancer spreads slowly down the neck through the lymph system. As the nodes collect cancer cells they 'fill up' and some glands can show signs of 'escape'. Of my four affected lymph glands one shows this tendency.
Over the years the medics have drawn a line between those patients who need follow up treatment and those who do not. Follow-up treatment is normally radio-therapy (or being zapped by a Dalek). There is nothing pleasant about this. For the first two or three weeks you are hardly aware of anything happening although you may get increasingly tired as the rays zap the energy out of you. But you have to go every day (although you do get the weekends off). Fortunately NHS transport is available for this as our nearest Dalek lives in Cheltenham. A door-to door service apparently. About 3 weeks in you start to suffer from zap-burn which is a bit like sun-burn. A skin cream is provided to sooth this and I am told that olive skin like mine which does not burn easily in the sun, may offer some protection. After that the inside of the mouth may begin to blister and ulcerate, the tongue may become swollen and generally the mouth becomes uncomfortable and painful. The rays can also damage the bone of the jaw and the tissue structure. They kill off the hair follicles - so I won't need to shave my left cheek again but also the salivary gland in the same cheek. Fortunately the right cheek will be protected and so saliva output should still be sufficient to avoid the dreaded 'dry-mouth'. I really don't fancy meeting the Dalek.
The line the medics draw between needing zap treatment or not is more than three affected lymph nodes or having just one where there are signs of 'escape'. I qualify, just, on both grounds. It took the Worcester butcher a good five minutes or more to get round to this. Again I was considering a murder defence on the grounds of incoherent incompetence and scientific obfuscation when I was told that Dalek treatment was "strongly recommended".
"Oh shit!" I thought. "Shit, shit, shit, shit, shit!!" I couldn't believe that I was so unlucky as to have put just a toe over the line. Just one gland less - if it had been the right one - and I would have escaped the Dalek and his zap-ray. Just my bad luck. Is it any wonder that I don't play poker?
Elaine returned and we recapped all the information we had just gone over. The precise details of the zap treatment will be left to the Dalek but as everything has probably been removed there is no immediate rush, they will give my mouth some time to recover first and the treatment will start in three or four weeks or so. I may need my mouth zapped or my neck or both. It may last four weeks or as many as seven. Some people breeze through with very few side effects, others find it unbearable and cannot complete the course of treatment. Then the butcher left us together, with the good news that I could go home tomorrow.
Of course, there were people to contact and give the news to. Father, friends, sister and so on. During the course of conversations I came to realise that there was another point of view. It may be three or four weeks of suffering when eating may prove almost impossible (I will still have the feeding tube in my stomach to inject food drinks through) BUT it will make it a 'Belt and Braces' treatment. On my last day in hospital I met a man who had had surgery a year ago for oesophageal cancer. They had reconstructed his oesophagus by using part of his small intestine but it hadn't worked properly and something had blocked up causing him to become anaemic, loose weight and generally spend most of the last year in or visiting hospital. He was back today to be admitted for more surgery. I certainly hope to avoid that level of familiarity with the nursing staff!
So perhaps I'm not unlucky after all. Perhaps my 'bad luck' is actually good luck in disguise. Maybe what I'd hoped for was actually the worst possible option and what I'd feared was actually the best. I can't tell whether I'm lucky or unlucky as I can't tell the difference any more. Is it any wonder that I don't play poker?
Wednesday, 22 August 2007
Back Home
Well, that's that over then!!
The operation took ten hours last Monday week. I asked the nurses whether they got a lunch break and they said they did; I asked the junior doctors whether they'd had a lunch break and they told me that they had taken turns; I asked the consultants and they admitted that they'd left the theatre to eat as well - seems I was the only one who didn't get get a lunch break!
I met the anaethesist on Monday morning and told him of my fear that I might be one of those you hear about occasionally who are paralysed but not unconscious and thus remember every moment and every pain of their operations. "Don't worry," he said, "I'm going to have you pretty deep and you won't be paralysed."
I went to sleep happy... I woke up happy. I was aware of people talking to me, of hands on me, of questions being asked, of realising it was over. People were telling me that everything had gone well, that I was on morphine, that someone had rung Elaine, could I wiggle my fingers on my right hand? I could. Was I in pain. I was. Where? It was a cross between charades and pantomime to get them to understand that my back was aching terribly. Eventually I got one of the junior doctors, a rather attractive, slim, young lady in fact, to understand that I wanted someone to rub my back or give me a massage. Before a masseuse could be summoned someone electrically adjusted my bed and raised my feet. The relief was instant and magical.
I gestured with my left hand that I wanted to write. I was given a pen and what felt like a thick pad (it turned out to be my medical notes) and I wrote answers to all the questions and asked a few of my own. The one thing I could not do, because I felt too lazy, was open my eyes. I wrote the right way up, I wrote upside down, I teased the nurses, I found I couldn't speak (I had a trachyostomy in my windpipe), I found I wasn't in pain (except for my back), I had no idea what the time was, where I was exactly, who was talking to me or what I should be doing. I got them to ring Elaine and then just made whatever noises I could down the mouthpiece - banging, scratching, rubbing - anything to let her know I was OK and as eccentric as ever. In the background I could hear a nurse trying to guess what I was doing, "Oh, morse code, no ... it's a signal?"
"No," I wrote, "it's just noises." And she read this down the phone to Elaine who got the idea.
Satisified that I was alive, not brain damaged and functioning satisfactorily, most of the audience withdrew and left me to the nurses. One asked if I'd like to listen to the radio. I nodded and she put some headphones on my ears. It was tuned to Radio One but from my expression the nurse judged that this was not what I wanted to listen to. Eventually we got to Classic FM and stopped there. Amazingly, at night this station broadcasts complete symphonies and concertos with no comments, advertisments or interuptions. It was just as well as I was disturbed every hour for my readings to be taken - blood pressure, blood oxygen levels, pulse and temperature. I didn't get much rest but I was totally out-of-it anyway.
Recovery started the next morning. The entire troop came to visit showing particular interest in the flap inplanted inside my cheek. They felt the pulse, checked the colour, looked for discharge and pronounced themselves well satisified with their handiwork. After lots of encouraging words and noises they all moved on to the next patient and left me speechless, being fed through a drip, still zonked out and anticipating the physiotherapist. Next time I opened my eyes there she was. I had to practise swallowing, moving my head up and down, round and round, shrugging my shoulders, tilting my head, a zillion and one things that had come totally naturally two days ago that I was going to have to learn all over again. Then I was taken for a walk. I had a velcro fastened belt fixed round my waist and then, with a physiotherapist on either side, holding me up, we strolled down the corridor. 5 minutes later I was back in bed my excitement over for the day.
The operation took ten hours last Monday week. I asked the nurses whether they got a lunch break and they said they did; I asked the junior doctors whether they'd had a lunch break and they told me that they had taken turns; I asked the consultants and they admitted that they'd left the theatre to eat as well - seems I was the only one who didn't get get a lunch break!
I met the anaethesist on Monday morning and told him of my fear that I might be one of those you hear about occasionally who are paralysed but not unconscious and thus remember every moment and every pain of their operations. "Don't worry," he said, "I'm going to have you pretty deep and you won't be paralysed."
I went to sleep happy... I woke up happy. I was aware of people talking to me, of hands on me, of questions being asked, of realising it was over. People were telling me that everything had gone well, that I was on morphine, that someone had rung Elaine, could I wiggle my fingers on my right hand? I could. Was I in pain. I was. Where? It was a cross between charades and pantomime to get them to understand that my back was aching terribly. Eventually I got one of the junior doctors, a rather attractive, slim, young lady in fact, to understand that I wanted someone to rub my back or give me a massage. Before a masseuse could be summoned someone electrically adjusted my bed and raised my feet. The relief was instant and magical.
I gestured with my left hand that I wanted to write. I was given a pen and what felt like a thick pad (it turned out to be my medical notes) and I wrote answers to all the questions and asked a few of my own. The one thing I could not do, because I felt too lazy, was open my eyes. I wrote the right way up, I wrote upside down, I teased the nurses, I found I couldn't speak (I had a trachyostomy in my windpipe), I found I wasn't in pain (except for my back), I had no idea what the time was, where I was exactly, who was talking to me or what I should be doing. I got them to ring Elaine and then just made whatever noises I could down the mouthpiece - banging, scratching, rubbing - anything to let her know I was OK and as eccentric as ever. In the background I could hear a nurse trying to guess what I was doing, "Oh, morse code, no ... it's a signal?"
"No," I wrote, "it's just noises." And she read this down the phone to Elaine who got the idea.
Satisified that I was alive, not brain damaged and functioning satisfactorily, most of the audience withdrew and left me to the nurses. One asked if I'd like to listen to the radio. I nodded and she put some headphones on my ears. It was tuned to Radio One but from my expression the nurse judged that this was not what I wanted to listen to. Eventually we got to Classic FM and stopped there. Amazingly, at night this station broadcasts complete symphonies and concertos with no comments, advertisments or interuptions. It was just as well as I was disturbed every hour for my readings to be taken - blood pressure, blood oxygen levels, pulse and temperature. I didn't get much rest but I was totally out-of-it anyway.
Recovery started the next morning. The entire troop came to visit showing particular interest in the flap inplanted inside my cheek. They felt the pulse, checked the colour, looked for discharge and pronounced themselves well satisified with their handiwork. After lots of encouraging words and noises they all moved on to the next patient and left me speechless, being fed through a drip, still zonked out and anticipating the physiotherapist. Next time I opened my eyes there she was. I had to practise swallowing, moving my head up and down, round and round, shrugging my shoulders, tilting my head, a zillion and one things that had come totally naturally two days ago that I was going to have to learn all over again. Then I was taken for a walk. I had a velcro fastened belt fixed round my waist and then, with a physiotherapist on either side, holding me up, we strolled down the corridor. 5 minutes later I was back in bed my excitement over for the day.
Two days later and looking like an unfinished work by Dr Frankenstein!!
A couple of days later a nurse turned up with a brain in a glass bowl. "We found this in the theatre," she said, "and thought it might be yours." I accepted it greatfully and gestured that she should install it. At last I was beginning to feel me again. Later the same day the ward sister, Sue, removed the trachy and suddenly I could speak again.
Talking actually got harder rather than easier as days went by. As the wounds healed scar tissue formed and this is thicker and less flexible. It got harder to open my mouth wide so brushing my teeth and putting food in became harder too. I have to talk in a really posh way now exercising both lips and tongue to try and maintain maximum flexibility and control - it's too easy to be lazy!
Time in prison got increasingly boring. I walked every corridor, balcony and basement available, stood people-watching in the main entrance, even got dressed and walked around the outside of the entire hospital. I could read again, get onto the internet, listen to the radio, watch TV or try to do puzzles in magazines but time passed so slowly that I even had to resort to sitting on the loo for something to do! Fortunately my afternoons and early evenings were filled with visitors and most mornings one doctor or another or a small posse of them came and inspected their handiwork. Blood was taken, blood pressure and pulse read, visits from the physios trailed off as everybody told me how well I was doing and what a good recovery I was making. Eventually Wednesday 22nd was identified as the day to go home. It was a beautiful day, I got the all clear, packed my bags and waited for Elaine.
By 4.30 that afternoon I was home, in glorious sunshine. We walked down to the post box, and back along the common. It is good to be home. I still have the dressing on the skin graft to my right hand and as such I cannot lift, carry, dig, garden, build, decorate, drive, throw and a host of other ordinary activities. They did offer to change the dressing but I knew this would only persuade me that I could undertake some of these tasks. Hopefully it will come off when I visit the hospital next Tuesday to be replaced by something lighter but as it hasn't seen the light of day yet there is still a bit of trepidation.
So, there we are, the story so far. Next exciting installment will look at why I don't play poker.
Sunday, 12 August 2007
Plan A for Again
It's Sunday afternoon and this time tomorrow my surgery will be more than half way over. It's going to be ugly! Still, I won't know anything about it as I'll be out cold under anaesthetic and I understand that I'll be pretty zonked out on morphine for the next few days. I'm told that facial surgery is not too painful so fingers crossed!
I have to have a couple of major grafts; skin from my inner forearm goes into my mouth to patch where the tumour is removed and then a graft from my stomach goes onto my arm. Apparently belly tissue is not good enough to go in the mouth. They also have to open my neck up as those lymph nodes have collected some cancerous cells. They will have to come out as will other tissue that may contain odd cells. Apparently this is the more delicate and demanding process.
Once it's all over the tissue removed goes off to pathology for examination and then judgements are made as to whether further treatment is required - that may be radiotherapy or chemotherapy. I won't know for several weeks.
I've already spent a couple of nights in hospital having a 'PEG' inserted. This is a little plastic tube that is stuck straight through into the stomach. It will be used for feeding me after the surgery on my mouth as I won't be able to eat for some time. They will keep it in, in case I have to have radiotherapy as that may stop me eating as well.
Having it inserted was not best fun. It's done under local anaesthetic and they stick a TV camera down the throat. When the camera is in the stomach they turn a light on which can be seen on the belly - punch a hole through and insert the tube. Of course you gag and feel uncomfortable as the endoscope is pushed through but the well trained team of nurses holds you down like professional judo fighters and resistance is futile. The wound is a bit sore but hasn't stopped me working in the garden (on light duties) this weekend.
Fortunately it has been a lovely weekend. Rather than go off shopping or exploring we've largely spent it at home although we did go out for afternoon tea yesterday. I'm going to miss working in the garden for the next ???? weeks - things are just coming together but there are still a lot of projects to undertake. I will feel cheated if for some reason I can't get round to them some time in the future.
Hopefully, by tomorrow evening Elaine will have been contacted by the surgeons. They've told her there will be no point in coming to visit tomorrow as I'll still be out cold so I don't expect to see her until Tuesday. I don't know when I'll be able to make the next entry here - or even talk as I'll have to have a tracheostomy during the surgery so the docs can control my breathing. That will be in for a few days at least so I'll only be able to communicate by writing. The next you'll hear directly from me may well be more than ten days away. My hospital recuperation is likely to be 10 - 14 days - well at least I'll be getting my money's worth out of the NHS.
Wish me luck!
I have to have a couple of major grafts; skin from my inner forearm goes into my mouth to patch where the tumour is removed and then a graft from my stomach goes onto my arm. Apparently belly tissue is not good enough to go in the mouth. They also have to open my neck up as those lymph nodes have collected some cancerous cells. They will have to come out as will other tissue that may contain odd cells. Apparently this is the more delicate and demanding process.
Once it's all over the tissue removed goes off to pathology for examination and then judgements are made as to whether further treatment is required - that may be radiotherapy or chemotherapy. I won't know for several weeks.
I've already spent a couple of nights in hospital having a 'PEG' inserted. This is a little plastic tube that is stuck straight through into the stomach. It will be used for feeding me after the surgery on my mouth as I won't be able to eat for some time. They will keep it in, in case I have to have radiotherapy as that may stop me eating as well.
Having it inserted was not best fun. It's done under local anaesthetic and they stick a TV camera down the throat. When the camera is in the stomach they turn a light on which can be seen on the belly - punch a hole through and insert the tube. Of course you gag and feel uncomfortable as the endoscope is pushed through but the well trained team of nurses holds you down like professional judo fighters and resistance is futile. The wound is a bit sore but hasn't stopped me working in the garden (on light duties) this weekend.
Fortunately it has been a lovely weekend. Rather than go off shopping or exploring we've largely spent it at home although we did go out for afternoon tea yesterday. I'm going to miss working in the garden for the next ???? weeks - things are just coming together but there are still a lot of projects to undertake. I will feel cheated if for some reason I can't get round to them some time in the future.
Hopefully, by tomorrow evening Elaine will have been contacted by the surgeons. They've told her there will be no point in coming to visit tomorrow as I'll still be out cold so I don't expect to see her until Tuesday. I don't know when I'll be able to make the next entry here - or even talk as I'll have to have a tracheostomy during the surgery so the docs can control my breathing. That will be in for a few days at least so I'll only be able to communicate by writing. The next you'll hear directly from me may well be more than ten days away. My hospital recuperation is likely to be 10 - 14 days - well at least I'll be getting my money's worth out of the NHS.
Wish me luck!
Tuesday, 7 August 2007
Mr Draculamp and the Broken Wand
It was half past one in the afternoon when Ron and Elaine struggled into Glass Fairy Towers. They steered the heavy bag full of books, pyjamas, lap-top computer, slippers and other paraphernalia for a hospital stay into the lift and up to the fourteenth floor. They had gone to see Mr Draculamp the Magician who was going to turn Ron into a vampire. As they stepped out onto the 14th floor the view across Giant City was astonishing.
"Look Elaine", called Ron, "I can see the Horses of Parlomint .... and the Brushes Museum .... and look, there's Raver's Park!"
At every point of the compass Ron could see places he knew from his younger days. Looking down on Giant City they could see people, vehicles, tree and parks, buildings, shops and stations. In the distance were the TV and Radio masts at Cristile Palace and Alestandra Palace. A line of heavy flying machines could be seen heading for Headrow.
"Hello, you don't remember me, do you?" said a little, blue-robed pixie. It was Anna the Pixie Nurse, one of Mr Draculamp's special helper's. She had just returned from kayaking a tent round lakes in Sweden. Anna took Ron and Elaine to a lovely room with a spanking view and took a little time to explain about life as a vampire. It didn't sound as though it was going to be as bad as Ron and Elaine had expected. For instance, the lid on the coffin didn't have to be put on completely; some people described the injection of vampire juice as 'painful' but others only said it was 'uncomfortable'; it was quite possible to drive at night after an injection without having to worry about the effects of headlamps on cars coming towards you. Well that made everything so much better, didn't it?
"OK", said Anna the Pixie Nurse, "why don't you unpack your things and then someone will come and start the ball rolling."
Ron and Elaine started to unpack. Out came the breathing machine to stop Ron snoring; out came the laptop computer for watching DVDs on; out came the books to stop Ron getting bored in the semi dark; out came the clothes; out came the light-proof balaclava and the gloves; out came the wash-bag and everything was put away neatly and tidily. Ron and Elaine waited, and waited, and waited, and waited.
At last, after so many centuries of waiting that the Giant City had started to crumble and was being invaded by forest; that Ron and Elaine had been buried under spiders webs; that the heavy flying machines no longer caused any pollution or noise, Little Fee arrived. Little Fee was studying a course on how to avoid upsetting patients when giving them bad news.
"May I have a look at your mouth?" asked Little Fee. Ron consented and Little Fee had a good look inside at the tumour, at the soreness, at the ulcers and the teeth which pointed in the wrong direction.
"I see, I see, I see", said Little Fee. "Now, we're going to have to reassess your treatment."
"I'm sorry?" said Ron.
"I'm sorry?" said Elaine.
"You see," said Little Fee, "the cancer has spread into two of the lymph glands under your jaw. This means that we will have to reassess your treatment," and off she went to collect Nick the Master Butcher.
"Now," said Nick the Master Butcher, "do you want to get well? Do you want me to cure you? Because if you do this is how I'll do it." And then Nick went on about thigh flaps, treatment modalities, dental extractions, micro-vascular reconnections, radical neck dissection, lip splits and lots and lots of other interesting things.
"But what about Mr Draclulamp's magic vampire juice?" asked Ron.
"Oh no, you're too ill for that!" said Little Fee.
"Oh no, you're too ill for that!" said Anna the Pixie Nurse.
"Oh no, you're too ill for that!" said Nick the Master Butcher. "That's only for people who are superficially ill. You'll be much better off letting me cure you. Nobody knows WHAT will happen if we start mixing treatments. Nobody has done THAT kind of magic before."
"But Mr Draculamp said HE could cure me!" said Ron. "He said his magic vampire juice and his magic laser wand would kill the tumour and make it go away."
"Ah, but he didn't know about the lymph glands," said Little Fee.
"Ah, but he didn't know about the lymph glands," said Anna the Pixie Nurse.
"Ah, but he didn't know about the lymph glands," said Nick the Master Butcher, "and THAT changes everything. Now Mr Draculamp COULD treat your tumour with his vampire juice and magic wand and then turn you over to me to do a modified, radical neck dissection ... but we don't know how it will work as no-one has done this before; we don't know what might go wrong as no-one has done this before; we don't know how to time it as no-one has done this before; we don't how to be sure we'll get it right as no-one has done this before."
"Oh shit!" said Ron.
"Oh double shit!!" said Elaine, "What does Mr Draculamp say?"
"Mr Draculamp is abroad in Earlupe today," said Anna the Pixie Nurse.
"Mr Draculamp is abroad in Earlupe today at a conference," said Little Fee.
"Mr Draculamp is abroad in Earlupe today," said Nick the Master Butcher, "but he will be here on Monday. Now nothing is going to change before then. Indeed, if you agree to let me make you better we can't do anything before August 28th as I have to go away on holiday."
Ron and Elaine had a miserable weekend trying to be happy. Then on Monday morning they caught the subterranean railway propulsion vehicle and travelled again to Giant City to visit Glass Fairy Towers. They were there good and early and so was Mr Draculamp.
"Hello," said Mr Draculamp.
"Hello," said Ron.
Elaine gave Mr Draculamp one of those looks that kill at thirty paces but as he was a magician it had no effect.
"I expect you're really upset," said Mr Draculamp.
Then Mr Draculamp went on to explain that he thought he COULD still cure the tumour with vampire juice and his magic wand BUT no-one had any experience of mixing treatment methods so it was risky. He said that if it was him he MIGHT go that route, but he was a risk-taker; if it was Mrs Draculamp he would tell her to take the surgery without hesitation.
Ron asked him, "Will you still use the vampire juice on me?"
"Only if you twist my arm off," said Mr Draculamp.
"We need a cup of tea," said Elaine. "Come on let's go."
So Ron and Elaine went down to the 'Really Expensive Cafeteria' for a cup of tea and a bun. They didn't need to talk very much as they both felt there wasn't really a choice and anyway all their blackouts had been taken down by the Helpful Neighbours when it seemed as though the magic wand would not work.
So sadly the next day they trekked back to Worcester and went to see the Worcester Butcher who said, "I thought I'd see you again. Don't worry, we're just as good as those Butchers in Giant City and we can make you better as well, can you come next Monday?"
And the moral of this story? - If things seem too good to be true, they probably are.
"Look Elaine", called Ron, "I can see the Horses of Parlomint .... and the Brushes Museum .... and look, there's Raver's Park!"
At every point of the compass Ron could see places he knew from his younger days. Looking down on Giant City they could see people, vehicles, tree and parks, buildings, shops and stations. In the distance were the TV and Radio masts at Cristile Palace and Alestandra Palace. A line of heavy flying machines could be seen heading for Headrow.
"Hello, you don't remember me, do you?" said a little, blue-robed pixie. It was Anna the Pixie Nurse, one of Mr Draculamp's special helper's. She had just returned from kayaking a tent round lakes in Sweden. Anna took Ron and Elaine to a lovely room with a spanking view and took a little time to explain about life as a vampire. It didn't sound as though it was going to be as bad as Ron and Elaine had expected. For instance, the lid on the coffin didn't have to be put on completely; some people described the injection of vampire juice as 'painful' but others only said it was 'uncomfortable'; it was quite possible to drive at night after an injection without having to worry about the effects of headlamps on cars coming towards you. Well that made everything so much better, didn't it?
"OK", said Anna the Pixie Nurse, "why don't you unpack your things and then someone will come and start the ball rolling."
Ron and Elaine started to unpack. Out came the breathing machine to stop Ron snoring; out came the laptop computer for watching DVDs on; out came the books to stop Ron getting bored in the semi dark; out came the clothes; out came the light-proof balaclava and the gloves; out came the wash-bag and everything was put away neatly and tidily. Ron and Elaine waited, and waited, and waited, and waited.
At last, after so many centuries of waiting that the Giant City had started to crumble and was being invaded by forest; that Ron and Elaine had been buried under spiders webs; that the heavy flying machines no longer caused any pollution or noise, Little Fee arrived. Little Fee was studying a course on how to avoid upsetting patients when giving them bad news.
"May I have a look at your mouth?" asked Little Fee. Ron consented and Little Fee had a good look inside at the tumour, at the soreness, at the ulcers and the teeth which pointed in the wrong direction.
"I see, I see, I see", said Little Fee. "Now, we're going to have to reassess your treatment."
"I'm sorry?" said Ron.
"I'm sorry?" said Elaine.
"You see," said Little Fee, "the cancer has spread into two of the lymph glands under your jaw. This means that we will have to reassess your treatment," and off she went to collect Nick the Master Butcher.
"Now," said Nick the Master Butcher, "do you want to get well? Do you want me to cure you? Because if you do this is how I'll do it." And then Nick went on about thigh flaps, treatment modalities, dental extractions, micro-vascular reconnections, radical neck dissection, lip splits and lots and lots of other interesting things.
"But what about Mr Draclulamp's magic vampire juice?" asked Ron.
"Oh no, you're too ill for that!" said Little Fee.
"Oh no, you're too ill for that!" said Anna the Pixie Nurse.
"Oh no, you're too ill for that!" said Nick the Master Butcher. "That's only for people who are superficially ill. You'll be much better off letting me cure you. Nobody knows WHAT will happen if we start mixing treatments. Nobody has done THAT kind of magic before."
"But Mr Draculamp said HE could cure me!" said Ron. "He said his magic vampire juice and his magic laser wand would kill the tumour and make it go away."
"Ah, but he didn't know about the lymph glands," said Little Fee.
"Ah, but he didn't know about the lymph glands," said Anna the Pixie Nurse.
"Ah, but he didn't know about the lymph glands," said Nick the Master Butcher, "and THAT changes everything. Now Mr Draculamp COULD treat your tumour with his vampire juice and magic wand and then turn you over to me to do a modified, radical neck dissection ... but we don't know how it will work as no-one has done this before; we don't know what might go wrong as no-one has done this before; we don't know how to time it as no-one has done this before; we don't how to be sure we'll get it right as no-one has done this before."
"Oh shit!" said Ron.
"Oh double shit!!" said Elaine, "What does Mr Draculamp say?"
"Mr Draculamp is abroad in Earlupe today," said Anna the Pixie Nurse.
"Mr Draculamp is abroad in Earlupe today at a conference," said Little Fee.
"Mr Draculamp is abroad in Earlupe today," said Nick the Master Butcher, "but he will be here on Monday. Now nothing is going to change before then. Indeed, if you agree to let me make you better we can't do anything before August 28th as I have to go away on holiday."
Ron and Elaine had a miserable weekend trying to be happy. Then on Monday morning they caught the subterranean railway propulsion vehicle and travelled again to Giant City to visit Glass Fairy Towers. They were there good and early and so was Mr Draculamp.
"Hello," said Mr Draculamp.
"Hello," said Ron.
Elaine gave Mr Draculamp one of those looks that kill at thirty paces but as he was a magician it had no effect.
"I expect you're really upset," said Mr Draculamp.
Then Mr Draculamp went on to explain that he thought he COULD still cure the tumour with vampire juice and his magic wand BUT no-one had any experience of mixing treatment methods so it was risky. He said that if it was him he MIGHT go that route, but he was a risk-taker; if it was Mrs Draculamp he would tell her to take the surgery without hesitation.
Ron asked him, "Will you still use the vampire juice on me?"
"Only if you twist my arm off," said Mr Draculamp.
"We need a cup of tea," said Elaine. "Come on let's go."
So Ron and Elaine went down to the 'Really Expensive Cafeteria' for a cup of tea and a bun. They didn't need to talk very much as they both felt there wasn't really a choice and anyway all their blackouts had been taken down by the Helpful Neighbours when it seemed as though the magic wand would not work.
So sadly the next day they trekked back to Worcester and went to see the Worcester Butcher who said, "I thought I'd see you again. Don't worry, we're just as good as those Butchers in Giant City and we can make you better as well, can you come next Monday?"
And the moral of this story? - If things seem too good to be true, they probably are.
Sunday, 29 July 2007
Blacking Out
The adventure is near and we have to get the house ready for my return. That means making it as light-proof as possible. I've dug out an old Weston Master light meter and found a table on the net that converts EVs (exposure values) into Lux. I'm allowed to experience 100 lux on my first day and this can increase by 100 lux per day for the first two weeks. The sunlight coming through one attic window this afternoon registered something like 8000 lux so there'll be someway to go!
I've brought several rolls of landscaping fabric. This is a woven, polyester sheet that is virtually 100% light proof. I've also bought a roll of gaffer tape and a box of drawing pins. The kitchen, with 6ft patio doors, 3 windows and a skylight will be the most difficult, our bedroom has 4 windows and another in the en-suite and the living room has 2 sets of French Doors and a window. We have a house with light and views which, in the present circumstances is a bit of a pain. Still it's not for long and won't take too long to do. I reckon a couple of hours from both of us and it will be finished if I don't run out of fabric. I've warned the neighbour in case she thinks we're turning the place into a bomb factory. We've also realised that we don't need to light-proof the whole house. There are some rooms where we can just keep the doors closed. At least this will mean that Elaine will be able to go and sit in some rooms (including the conservatory) where there will be natural daylight and even sunshine. Wouldn't you just know that the forecast for the next couple of weeks is for brighter, sunny weather! I am really going to resent not being able to sit in the conservatory and watch the garden or enjoy a rare glimpse of the sun. I'm going to be really p***ed off not being able to work in the garden as there are still a lot of jobs I want to do and I have really enjoyed the time I have spent on garden landscaping and design over the past couple of years. It's a weird thing living in a house that feels like winter all the time. In the places that I've 'proofed' already it seems like permanent night-time.
We've also fashioned a balaclava out of a thinner landscaping fabric. I've had to make it double thinkness as this fabric is not so lightproof. We had great fun working out a design and template, getting it to fit tight and making sure it covered exposed flesh generously. So far there are no eye-holes and it does get pretty warm in there. I may have to wear it as we drive back from London in a week and a half or I may just be able to cover up with a scarf. We'll probably drive back after sunset to avoid the sunlight but I don't know whether I'll even be able to drive so Elaine may have to do it all herself. Can you just see the scene if we get spotted and then stopped? Armed police approaching with their guns drawn whilst the mysterious hooded mobster/terrorist/bomber sits in the car and refuses to come out into the light. Then, when other police go to search the address given by DVLA, they arrive to find all the windows obscured by black, light-proof fabric making it impossible to see what is going on inside. But then they have to interrogate me but are not allowed to use the 'shine the light into the eyes' technique and so get nowhere.
Excuse the flight of fantasy - but can you imagine trying to get back home by public transport? As it is we'll probably have to arrange a mini-cab to collect us from the hospital and take us back to Brentford where we'll have left the car at my dads flat.
Fortunately we managed to get the cat into our neighbouring cattery. That's a major concern off our hands. They know him well and he knows them although he probably wouldn't choose to go there if we could ask him. He's so old and fussy that he needs coaxing before he will eat. That, together with the facts that he's deaf and virtually blind in one eye, means he needs special care and attention.
So, reckoning approaches. Once I get to London I may not be able to access the internet so there may be nothing added (nor e-mails answered) for a couple of weeks. After that I should be able to say how successful the treatment has been - so watch this space.
Ron
I've brought several rolls of landscaping fabric. This is a woven, polyester sheet that is virtually 100% light proof. I've also bought a roll of gaffer tape and a box of drawing pins. The kitchen, with 6ft patio doors, 3 windows and a skylight will be the most difficult, our bedroom has 4 windows and another in the en-suite and the living room has 2 sets of French Doors and a window. We have a house with light and views which, in the present circumstances is a bit of a pain. Still it's not for long and won't take too long to do. I reckon a couple of hours from both of us and it will be finished if I don't run out of fabric. I've warned the neighbour in case she thinks we're turning the place into a bomb factory. We've also realised that we don't need to light-proof the whole house. There are some rooms where we can just keep the doors closed. At least this will mean that Elaine will be able to go and sit in some rooms (including the conservatory) where there will be natural daylight and even sunshine. Wouldn't you just know that the forecast for the next couple of weeks is for brighter, sunny weather! I am really going to resent not being able to sit in the conservatory and watch the garden or enjoy a rare glimpse of the sun. I'm going to be really p***ed off not being able to work in the garden as there are still a lot of jobs I want to do and I have really enjoyed the time I have spent on garden landscaping and design over the past couple of years. It's a weird thing living in a house that feels like winter all the time. In the places that I've 'proofed' already it seems like permanent night-time.
We've also fashioned a balaclava out of a thinner landscaping fabric. I've had to make it double thinkness as this fabric is not so lightproof. We had great fun working out a design and template, getting it to fit tight and making sure it covered exposed flesh generously. So far there are no eye-holes and it does get pretty warm in there. I may have to wear it as we drive back from London in a week and a half or I may just be able to cover up with a scarf. We'll probably drive back after sunset to avoid the sunlight but I don't know whether I'll even be able to drive so Elaine may have to do it all herself. Can you just see the scene if we get spotted and then stopped? Armed police approaching with their guns drawn whilst the mysterious hooded mobster/terrorist/bomber sits in the car and refuses to come out into the light. Then, when other police go to search the address given by DVLA, they arrive to find all the windows obscured by black, light-proof fabric making it impossible to see what is going on inside. But then they have to interrogate me but are not allowed to use the 'shine the light into the eyes' technique and so get nowhere.
Excuse the flight of fantasy - but can you imagine trying to get back home by public transport? As it is we'll probably have to arrange a mini-cab to collect us from the hospital and take us back to Brentford where we'll have left the car at my dads flat.
Fortunately we managed to get the cat into our neighbouring cattery. That's a major concern off our hands. They know him well and he knows them although he probably wouldn't choose to go there if we could ask him. He's so old and fussy that he needs coaxing before he will eat. That, together with the facts that he's deaf and virtually blind in one eye, means he needs special care and attention.
So, reckoning approaches. Once I get to London I may not be able to access the internet so there may be nothing added (nor e-mails answered) for a couple of weeks. After that I should be able to say how successful the treatment has been - so watch this space.
Ron
Thursday, 26 July 2007
Here I go!
I think my first visit to the hospital was on 8th May, I was referred sometime in February by my dentist. Now, at last, I am in sight of some treatment. It's been a long journey of hope and disappointment. All along the way I've been told it's probably nothing, there's no sign of cancer, yes we can give you a complete cure, there's nothing to worry about, everything will be OK. In turn I have been giving out these messages and I really do believe this. I also know I have to die of something and I am sure there are worse things than cancer, especially now that there is such good palliative care.
LONDON CALLING: I have to go down next Tuesday (31st July) ready for an appointment for an ultrasound scan on Wednesday. After that a final day of 'freedom' before going into hospital for the 'vampire injection' on Friday. This will be followed by a very boring weekend in hospital, in a coffin, with the lid closed. The 'procedure' will then take place on Tuesday 7th August (wish me luck!) after which they will probably keep me in for Tuesday and maybe Wednesday night. Then back to Worcester on Thursday and the first six days of light avoidance will already have gone.
In the meantime we have to light-proof the house. Like all vampires, sunlight means death to me. Unlike Dracula and Co. I wouldn't explode into a cloud of dust but would slowly redden and blister over the next 24 hours until I look like the elephant man and feel like Joan of Arc. Not an experience to be recommended. We have to cover all the doors and windows with light proof cloth- I'll probably use weed control fabric as when it's finished with I can use it in the garden. I don't know how light proof it is so, if necessary, I'll have to put up double layers. The conservatory will be a challenge which I won't even take on. I'll just not be able to use it for a few weeks and will light-proof the doors into it. One of the nicest things about out house is that it is so light with many windows and beautiful views. It's not often that I wished I lived in an ecofriendly, underground home - but this is one of the occasions when I do.
Still, the most sensitive time will be over by the time I get home. I'll be able to use the computer and watch the telly, even walk around the common at dusk. A week later I'll be able to sit in the shade in the garden for a short while and even test my sensitivity to sunlight. Hopefully a couple of weeks after that (end of August) I'll be able to lead a fairly normal life. All part of life's rich tapestry; not to be recommended but - as they say - what doesn't kill you just makes you stronger. I'll keep busy up until next week - there's a lot to do and it will keep my mind off things; then the waiting and the nerves will start. Hopefully the treatment will go smoothly and I'll be one of those lucky people who does not experience too much pain afterwards - I think I can handle cave-dwelling but if I can't eat I'll be miserable I expect.
I may not be able to add to this blog while I'm in hospital so there may be no news after Tuesday next for 10 days or so. Hope you can wait for the next thrilling installment!
I'll be thinking of you!
Ron
LONDON CALLING: I have to go down next Tuesday (31st July) ready for an appointment for an ultrasound scan on Wednesday. After that a final day of 'freedom' before going into hospital for the 'vampire injection' on Friday. This will be followed by a very boring weekend in hospital, in a coffin, with the lid closed. The 'procedure' will then take place on Tuesday 7th August (wish me luck!) after which they will probably keep me in for Tuesday and maybe Wednesday night. Then back to Worcester on Thursday and the first six days of light avoidance will already have gone.
In the meantime we have to light-proof the house. Like all vampires, sunlight means death to me. Unlike Dracula and Co. I wouldn't explode into a cloud of dust but would slowly redden and blister over the next 24 hours until I look like the elephant man and feel like Joan of Arc. Not an experience to be recommended. We have to cover all the doors and windows with light proof cloth- I'll probably use weed control fabric as when it's finished with I can use it in the garden. I don't know how light proof it is so, if necessary, I'll have to put up double layers. The conservatory will be a challenge which I won't even take on. I'll just not be able to use it for a few weeks and will light-proof the doors into it. One of the nicest things about out house is that it is so light with many windows and beautiful views. It's not often that I wished I lived in an ecofriendly, underground home - but this is one of the occasions when I do.
Still, the most sensitive time will be over by the time I get home. I'll be able to use the computer and watch the telly, even walk around the common at dusk. A week later I'll be able to sit in the shade in the garden for a short while and even test my sensitivity to sunlight. Hopefully a couple of weeks after that (end of August) I'll be able to lead a fairly normal life. All part of life's rich tapestry; not to be recommended but - as they say - what doesn't kill you just makes you stronger. I'll keep busy up until next week - there's a lot to do and it will keep my mind off things; then the waiting and the nerves will start. Hopefully the treatment will go smoothly and I'll be one of those lucky people who does not experience too much pain afterwards - I think I can handle cave-dwelling but if I can't eat I'll be miserable I expect.
I may not be able to add to this blog while I'm in hospital so there may be no news after Tuesday next for 10 days or so. Hope you can wait for the next thrilling installment!
I'll be thinking of you!
Ron
Saturday, 21 July 2007
Forget the bl***ing cancer, THIS is serious!!!
It started raining at about 8.00pm on Thursday evening after a beautiful sunny day. Within ten minutes it was coming down in buckets and this kept up all night and all day on Friday. What a day to retire on!
What with the cancer, hospital visits and treatment research I'd not had much time to think about retirement. Well that's not quite accurate - I had cleared my desk, removed most of my personal property, finished all my administrative tasks, shredded or disposed of no longer needed papers, brought gifts, written a speech and so on - but I hadn't come to terms with the reality.
That all changed yesterday afternoon when I looked at rooms, friends, colleagues, pigeon- holes, name-tags, equipment, chairs, coat-pegs, trays, kettles, switches, roof tiles, puddles, carpets, mats, windows, text books, mugs, boards, door handles, initials and a thousand and one other things that will no longer be part of my life. Everything that has been a familiar part of my professional life for 18 years has suddenly been stripped away. My relationship with half my life has gone and will never be there again. I am now a different person and even when I go back to visit I will not be the same person as I was yesterday and the day before and the 18 years before that.
I gave a speech. It was expected and is part of the tradition - and I enjoyed it. As a teacher, like all my colleagues, there are times when I enjoy having an audience and enjoy making people laugh. I didn't expect to choke up or get emotional ... but I did and that was a really strange experience. Trips, study leave and the foulest of weather meant that that some of those who have been most important to me over the years were not able to be there and were sorely missed. Not that I took a register but amongst them were, in no particular order ... Danny DCH, Gisele GTW, Kate CMJ, Rachel RT and Helen HLJ, Caroline HCT, Karen KEM, Deb Wilko ?DW, Oliver OG, Andy AMW and Rob RE, Katie KAW. I'm sure I've missed many who are equally important to me but as I said, I didn't take a register. If you're one who couldn't be there, I'm sorry I didn't get the chance to say goodbye to you guys - you have all been so important to me over the years.
Of course, with the emotion of the time and the only semi-completed transcription, I lost my way and missed out some parts of my speech. You only get one crack at these things but there's part of me that wants to do it again (like getting married) - although I know the jokes won't be as funny the second time around! However I'm not going to apply for another performance or even provide you with the script for the bits I missed out but I will just say three things that I forgot to say on Friday.
1. Thank you to all of you. There has never been a colleague that I've learnt or gained nothing from. Every one of you has added something to my life - thanks.
2. If I've ever offended or upset any one of you I apologise. That was never my intention.
3. My thanks/toasts really should have been toasts - looking back I can see that there is a significant distinction between toasting those who have put in their time serving a community or those of us, trained in teacher training colleges who are still non-graduates, and offering thanks to them. In that light I want to offer one final toast that I forgot on Friday.
To Heads and Deputies - I've worked with over thirty Heads and Deputies over the years. There were four alone at DSHS in 1989 when I first arrived. They have been of all sorts and natures; some are still my friends. So ladies and gentlemen I give you Heads and Deputies, God bless them - why is it they can NEVER get ANYTHING right?
So thanks to all my colleagues, current and past, you've meant a lot to me. Your help, support and friendship over the years, particularly in the last year and especially in the past few weeks has been invaluable and hugely welcome. I won't forget you - indeed I've got a couple of hundred weight of granite to make sure I don't.
It will be obvious from the picture that this is not finished yet. I'll publish another picture when it's all done.
I'll always be pleased to hear from you by whatever means you choose. I will count it a happy and lucky day should I meet up with you - deliberately or by chance or when you come to visit.
So - there we go, a new life starts today and perhaps a new blog - well once this one is concluded anyway.
I love and will miss you all.
Ron
What with the cancer, hospital visits and treatment research I'd not had much time to think about retirement. Well that's not quite accurate - I had cleared my desk, removed most of my personal property, finished all my administrative tasks, shredded or disposed of no longer needed papers, brought gifts, written a speech and so on - but I hadn't come to terms with the reality.
That all changed yesterday afternoon when I looked at rooms, friends, colleagues, pigeon- holes, name-tags, equipment, chairs, coat-pegs, trays, kettles, switches, roof tiles, puddles, carpets, mats, windows, text books, mugs, boards, door handles, initials and a thousand and one other things that will no longer be part of my life. Everything that has been a familiar part of my professional life for 18 years has suddenly been stripped away. My relationship with half my life has gone and will never be there again. I am now a different person and even when I go back to visit I will not be the same person as I was yesterday and the day before and the 18 years before that.
I gave a speech. It was expected and is part of the tradition - and I enjoyed it. As a teacher, like all my colleagues, there are times when I enjoy having an audience and enjoy making people laugh. I didn't expect to choke up or get emotional ... but I did and that was a really strange experience. Trips, study leave and the foulest of weather meant that that some of those who have been most important to me over the years were not able to be there and were sorely missed. Not that I took a register but amongst them were, in no particular order ... Danny DCH, Gisele GTW, Kate CMJ, Rachel RT and Helen HLJ, Caroline HCT, Karen KEM, Deb Wilko ?DW, Oliver OG, Andy AMW and Rob RE, Katie KAW. I'm sure I've missed many who are equally important to me but as I said, I didn't take a register. If you're one who couldn't be there, I'm sorry I didn't get the chance to say goodbye to you guys - you have all been so important to me over the years.
Of course, with the emotion of the time and the only semi-completed transcription, I lost my way and missed out some parts of my speech. You only get one crack at these things but there's part of me that wants to do it again (like getting married) - although I know the jokes won't be as funny the second time around! However I'm not going to apply for another performance or even provide you with the script for the bits I missed out but I will just say three things that I forgot to say on Friday.
1. Thank you to all of you. There has never been a colleague that I've learnt or gained nothing from. Every one of you has added something to my life - thanks.
2. If I've ever offended or upset any one of you I apologise. That was never my intention.
3. My thanks/toasts really should have been toasts - looking back I can see that there is a significant distinction between toasting those who have put in their time serving a community or those of us, trained in teacher training colleges who are still non-graduates, and offering thanks to them. In that light I want to offer one final toast that I forgot on Friday.
To Heads and Deputies - I've worked with over thirty Heads and Deputies over the years. There were four alone at DSHS in 1989 when I first arrived. They have been of all sorts and natures; some are still my friends. So ladies and gentlemen I give you Heads and Deputies, God bless them - why is it they can NEVER get ANYTHING right?
So thanks to all my colleagues, current and past, you've meant a lot to me. Your help, support and friendship over the years, particularly in the last year and especially in the past few weeks has been invaluable and hugely welcome. I won't forget you - indeed I've got a couple of hundred weight of granite to make sure I don't.
It will be obvious from the picture that this is not finished yet. I'll publish another picture when it's all done.I'll always be pleased to hear from you by whatever means you choose. I will count it a happy and lucky day should I meet up with you - deliberately or by chance or when you come to visit.
So - there we go, a new life starts today and perhaps a new blog - well once this one is concluded anyway.
I love and will miss you all.
Ron
Thursday, 19 July 2007
A VERY Nice Man
My mouth has just got painful since last weekend. Suddenly I find that I'm just bitting the inside of my mouth when I chew. Either it has swollen a little more or I've bitten it unknowingly (in the night?) or something else. Whatever now, every time I chew anything I'm just aware of nipping the inside of my left cheek. Eating is no longer a pleasure and for the last 48 hours I've been living on a liquid diet of soup and scrambled egg. I think I'm likely to start liquidise other food for variety and to avoid have to prepare two meals. I'm also likely to get a juicer. This was recommended by the Bristol Cancer Centre. They want be to boost my immune system and improve my diet by drinking organic apple and carrot juice. Well if I can't chew this maybe a good idea.
I'm glad I did my homework - and that may just be the first time in my lifeI've ever said that! Spend most of yesterday in UCHL. Deliberately got there early in the hope that I might be seen early and get away before the rush hour. I didn't and so Elaine and I sat for an hour and a half in a cramped, overheated waiting room. I had an amusing read to keep me occupied and she had her novel but it was still tedious and trying. Eventually, at about 4.00pm we met the consultant himself. He took a look in my mouth and unhesitatingly agreed that it could be treated, with a likely success rate of 88 - 93%. It's likely to hurt - possibly like hell, but they'll give me a bucket load of analgesics (everything from paracetamol to morphine) as well as opiate patches, to control the pain. They'll remove my wisdom teeth which are now catching my cheek and which may have had some part to play in damaging my cheek; they'll inject me with the magic potion that both finds and then destroys the cancer cells; they lock me away in a darkened room for the next three days and then they'll zap my cheek with a laser. Following this I may stay in hospital for night or two more whilst they monitor my light sensitivity and initial recovery and then I have to become a vampire for another two weeks or so whilst I am still highly photosensitive. With good luck within four weeks life should be back to something like normal. I won't be able to work in the garden all day, well not stripped to the waist anyway, but I will be able to go out for short walks as long as I'm covered and it's not wall-to-wall Mediterranean sunshine. Within 3 months things should pretty much be back to normal but I will need to keep my injection arm covered for abut 6 months to be sure that all the magic potion has cleared out of my system. After that, monitoring for another 5 years and hopefully all will be OK.
So when can they start?
Injections are given on Friday and treatment the following Tuesday. So ... not tomorrow, possibly next Friday (27th July), more likely the following Friday (3rd August) but just maybe the Friday after that (10th). The longer it's put off the more time I'll have to get the garden sorted.
So,that's where it's at now - and for those of you wondering - yes all on the NHS.
OK, time to go to work - more soon.
Ron
I'm glad I did my homework - and that may just be the first time in my lifeI've ever said that! Spend most of yesterday in UCHL. Deliberately got there early in the hope that I might be seen early and get away before the rush hour. I didn't and so Elaine and I sat for an hour and a half in a cramped, overheated waiting room. I had an amusing read to keep me occupied and she had her novel but it was still tedious and trying. Eventually, at about 4.00pm we met the consultant himself. He took a look in my mouth and unhesitatingly agreed that it could be treated, with a likely success rate of 88 - 93%. It's likely to hurt - possibly like hell, but they'll give me a bucket load of analgesics (everything from paracetamol to morphine) as well as opiate patches, to control the pain. They'll remove my wisdom teeth which are now catching my cheek and which may have had some part to play in damaging my cheek; they'll inject me with the magic potion that both finds and then destroys the cancer cells; they lock me away in a darkened room for the next three days and then they'll zap my cheek with a laser. Following this I may stay in hospital for night or two more whilst they monitor my light sensitivity and initial recovery and then I have to become a vampire for another two weeks or so whilst I am still highly photosensitive. With good luck within four weeks life should be back to something like normal. I won't be able to work in the garden all day, well not stripped to the waist anyway, but I will be able to go out for short walks as long as I'm covered and it's not wall-to-wall Mediterranean sunshine. Within 3 months things should pretty much be back to normal but I will need to keep my injection arm covered for abut 6 months to be sure that all the magic potion has cleared out of my system. After that, monitoring for another 5 years and hopefully all will be OK.
So when can they start?
Injections are given on Friday and treatment the following Tuesday. So ... not tomorrow, possibly next Friday (27th July), more likely the following Friday (3rd August) but just maybe the Friday after that (10th). The longer it's put off the more time I'll have to get the garden sorted.
So,that's where it's at now - and for those of you wondering - yes all on the NHS.
OK, time to go to work - more soon.
Ron
Monday, 16 July 2007
Ignorance is Ignorance
Perhaps what pissed me off the most last Tuesday, was the fact that the 'experts' - the Butcher and the Dalek - felt no need whatsoever to even mention the fact that butchery and blasting with ray-guns were not the only therapies. I could have come away from that meeting feeling that these were the only options. Never, not at the preliminary meeting nor at the board, did anyone even hint that there were other treatments. I don't think I was even advised to look for alternatives.
But THERE ARE ALTERNATIVES and they sound seriously better that the comparatively primitive approaches supported by my local NHS. If you have just discovered that you have cancer you MUST investigate the range of therapies. Don't fall into the trap of thinking that the first doctor you are referred to is going to be the best - or even give you the best advice. According to something I read it takes an average of 17 years for new, cutting edge (pun) treatments to be accepted as acceptable mainstream practice. Can you imagine your consultant driving around in a 17 year old car ... on his salary? I don't think so!
I've been doing a lot more looking into Photodynamic Therapy since last Wednesday. It almost sounds miraculous! Apparently it's been around for almost 100 years - and as far as I can discover there are still only two places offering this on the NHS. So I feel lucky to have got as far as an appointment in just a week.
But even the NHS is not at the cutting edge. Light therapy has come on significantly in the last few years. Firstly the photosensitive dyes have improved. But before that, a warning...I cannot guarantee the accuracy of what come next. This is just my interpretation of what I have read on the net. I think I understand it but I am just a layman so there could be errors. However, I think I've got the big picture right. Back to the dyes. The original ones were based on haemoglobin, obviously a substance that had huge ability to carry extra oxygen around. They are also long lasting which is the reason that one has to avoid exposure to bright lights for several weeks after. More recently dyes have been developed based on chlorophyl. Apparently this is quite similar chemically to haemoglobin and clearly schoolboy science tells us that it is light sensitive. But the dye's life time is much shorter and as far as I can discover it does not react to normal light so the body is nothing like as photosensitive. Secondly the light source and type of light used has moved on. The original dyes responded to intense white/blue light generated by a laser. This light could only penetrate tissue to a depth of around a third of an inch so only shallow or superficial tumours can be treated in this way. Only one treatment was needed if it was appropriate. More recent developments have designed short-life dyes that respond to infrared and red light. The wave length of this light enables deep tissue penetration (think of infared heat lamps used to treat muscular problems). The light is generated by a machine that looks something like a sunbed! You lie on it for anything between 15 and 45 minutes whilst your whole body is dosed with infared. As the dyes only attach to cancerous cells only diseased parts of the body are effected. However, if the cancer has spread (metastesized) even unknown tumours deep inside the body are destroyed. The treatment regime is also different. Instead of having just one blast of light and thanks very much it's all over now, the treament extends over two weeks. Injection or drops on Monday then three exposure sessions on Wednesday, Thursday and Friday - all repeated again the following week and then a follow up appointment with the consultant two weeks later to check that the bloods etc are clear. A follow up MRI scan after a couple of months and Bob's y'er uncle.
Of course, it goes to say that this treatment is not yet available on the NHS. Give it another 10 years or so and treatments like this may be widespread but for now there is only one place in England where it is done - a private clinic in Hampshire. Whilst they will accept NHS funded patients the NHS is unlikely to pay for it. But the atmosphere is changing. Contact your Primary Care Trust and ask for the Commissioning Officer. If you can convince said officer that this treatment and ONLY this treatment will deal with your illness you may stand a chance of the fairly hefty fee being paid for you.
This treatment is (apparently) so effective that some people, with a history of cancer in their family, are now using it as a precautionary, preventative measure. As there is no level of toxicity or build up of effect (as there is with the Dalek treatment) treatment seems to be completely safe and infinitely repeatable. I know, it sounds too good to be true. Watch this space!
For those of you who are mystified by the Dalek reference: You are obviously not fans of Dr Who. This is a very long running science-fiction TV drama which has been broadcast by the BBC since the early 1960's. Dr Who, the last of the Time Lords travels the universe in his time and space ship the Tardis. He has a particular affection for the people of earth who he saves from universal destruction almost every week. The Daleks are one of his chief ememies - a combination of slime and robot armed with ray-guns and a limited vocabulary of which "EXTERMINATE!!" is the most frequently repeated word.
But THERE ARE ALTERNATIVES and they sound seriously better that the comparatively primitive approaches supported by my local NHS. If you have just discovered that you have cancer you MUST investigate the range of therapies. Don't fall into the trap of thinking that the first doctor you are referred to is going to be the best - or even give you the best advice. According to something I read it takes an average of 17 years for new, cutting edge (pun) treatments to be accepted as acceptable mainstream practice. Can you imagine your consultant driving around in a 17 year old car ... on his salary? I don't think so!
I've been doing a lot more looking into Photodynamic Therapy since last Wednesday. It almost sounds miraculous! Apparently it's been around for almost 100 years - and as far as I can discover there are still only two places offering this on the NHS. So I feel lucky to have got as far as an appointment in just a week.
But even the NHS is not at the cutting edge. Light therapy has come on significantly in the last few years. Firstly the photosensitive dyes have improved. But before that, a warning...I cannot guarantee the accuracy of what come next. This is just my interpretation of what I have read on the net. I think I understand it but I am just a layman so there could be errors. However, I think I've got the big picture right. Back to the dyes. The original ones were based on haemoglobin, obviously a substance that had huge ability to carry extra oxygen around. They are also long lasting which is the reason that one has to avoid exposure to bright lights for several weeks after. More recently dyes have been developed based on chlorophyl. Apparently this is quite similar chemically to haemoglobin and clearly schoolboy science tells us that it is light sensitive. But the dye's life time is much shorter and as far as I can discover it does not react to normal light so the body is nothing like as photosensitive. Secondly the light source and type of light used has moved on. The original dyes responded to intense white/blue light generated by a laser. This light could only penetrate tissue to a depth of around a third of an inch so only shallow or superficial tumours can be treated in this way. Only one treatment was needed if it was appropriate. More recent developments have designed short-life dyes that respond to infrared and red light. The wave length of this light enables deep tissue penetration (think of infared heat lamps used to treat muscular problems). The light is generated by a machine that looks something like a sunbed! You lie on it for anything between 15 and 45 minutes whilst your whole body is dosed with infared. As the dyes only attach to cancerous cells only diseased parts of the body are effected. However, if the cancer has spread (metastesized) even unknown tumours deep inside the body are destroyed. The treatment regime is also different. Instead of having just one blast of light and thanks very much it's all over now, the treament extends over two weeks. Injection or drops on Monday then three exposure sessions on Wednesday, Thursday and Friday - all repeated again the following week and then a follow up appointment with the consultant two weeks later to check that the bloods etc are clear. A follow up MRI scan after a couple of months and Bob's y'er uncle.
Of course, it goes to say that this treatment is not yet available on the NHS. Give it another 10 years or so and treatments like this may be widespread but for now there is only one place in England where it is done - a private clinic in Hampshire. Whilst they will accept NHS funded patients the NHS is unlikely to pay for it. But the atmosphere is changing. Contact your Primary Care Trust and ask for the Commissioning Officer. If you can convince said officer that this treatment and ONLY this treatment will deal with your illness you may stand a chance of the fairly hefty fee being paid for you.
This treatment is (apparently) so effective that some people, with a history of cancer in their family, are now using it as a precautionary, preventative measure. As there is no level of toxicity or build up of effect (as there is with the Dalek treatment) treatment seems to be completely safe and infinitely repeatable. I know, it sounds too good to be true. Watch this space!
For those of you who are mystified by the Dalek reference: You are obviously not fans of Dr Who. This is a very long running science-fiction TV drama which has been broadcast by the BBC since the early 1960's. Dr Who, the last of the Time Lords travels the universe in his time and space ship the Tardis. He has a particular affection for the people of earth who he saves from universal destruction almost every week. The Daleks are one of his chief ememies - a combination of slime and robot armed with ray-guns and a limited vocabulary of which "EXTERMINATE!!" is the most frequently repeated word.
Wednesday, 11 July 2007
OK - now what?
It's two weeks today since my diagnosis. Yesterday we went back to see the consultants and get the results of the investigations that had been done over the last fortnight. It was not as dreadful as it could have been although we would have been better reassured if they had at least looked at the chest x-ray.
There were two doctors there at first and they each outlined their treatment option. First the cutter. He could cut open my cheek have first measured up my jaw for a stainless steel plate. (They were going to 'break' my jaw to ease access and then screw it together again.) After that the surgeon would remove the tumour and surrounding tissue, graft on some skin from the inside of my wrist, graft some skin from my abdomen onto the wrist, sew everything back up together and bob's your uncle .... I was told that the pain would be controlled by strong analgesics for a few days after which domestic painkillers would suffice, I will be fed by a tube into my stomach and would start to eat for myself only 3 or 4 days in, the scars would not be evident and the risks of droopy lip and stuck tight closed mouth were easily exaggerated. It didn't sound too bad!!
The ray-gun man then outlined his approach. They will take out any questionable teeth right round to the upper and lower incisors. After that they zap me, every day and sometimes twice a day except weekends. Everything is fine for the first week or two - then things start getting unpleasant. The mouth begins to get ulcerated, the cheek feels sunburnt, the mouth dries up, the tongue gets swollen, the place where the lips meet dries and cracks, the beard stops growing on one side of the face, hair drops out at the nape of the neck where the rays emerge and more and more and still 3 weeks of torture to go. I could see me lying in bed in the morning with a mouth that felt as though it had been filled with boiling tar, not wanting to drive down to Cheltenham for yet another dose. I found it hard to imagine that anyone would choose this option if there was a choice. The ray-zapping causes such damage to the jaw-bone and soft tissues that future injuries will heal only very slowly if at all - hence the prior removal of teeth and the ban on boxing for the future. I really don't think I want to tackle this!
I asked about 'alternative therapies' and drew a gallery of blank, somewhat disapproving faces at the suggestions of hydrogen peroxide therapy, treatment with urea or shark cartilidge, ultra huge doses of vitamins and other dietary variations. Then I mentioned light therapy. This drew a more approving response - "We don't do that here!" Not too helpful you might think, I certainly did - but they did give me the contact details of a consultant at University College Hospital - London. Now you might not believe in omens or fate or destiny or anything like that but I could not but fail to be heartened by the fact that I was born in UCHL. They managed to get that bit of my life right so maybe there's hope now as well. I got in touch and by the miracles of fax, alumni, badgering, answer phones and hot pursuit I managed to get an appointment next Wednesday afternoon (18th July). The doctor is the head of the National Medical Laser Institute but is also an oral surgeon so hopefully I'll get clear, unbiased advice about the pros and cons of each treatment. The Photo-dynamic therapy sounds as though it could be helpful. They inject me with a light sensitive dye that attaches to cancerous cells only. Once it's had time to circulate they blast the affected area with high intensity light. The dye then gives up an oxygen atom which goes on to kill the cancerous cells. Healthy tissue is not effected and there is only one treatment. Downsides - the cheek will feel burnt for a while and I will remain photo-sensitive for about 6 weeks which means I will have to avoid bright lights, sunshine and so on. Another problem is that the light can only penetrate about a quarter of an inch so if the tumour is too deep the treatment will not be appropriate. At the least I hope to get unbiased advice about which type of treatment is more appropriate.
After that - back to Worcester Royal Infirmary on Tuesday 24th for a final decision if it hasn't been taken already. So, more waiting, a second opinion, an alternative treatment which, if appropriate might be less traumatic and invasive than anything else on offer and a good few weeks of unpleasantness to look forward to. And plenty of hope.
If you're in a similar position to me - good luck.
Ron
There were two doctors there at first and they each outlined their treatment option. First the cutter. He could cut open my cheek have first measured up my jaw for a stainless steel plate. (They were going to 'break' my jaw to ease access and then screw it together again.) After that the surgeon would remove the tumour and surrounding tissue, graft on some skin from the inside of my wrist, graft some skin from my abdomen onto the wrist, sew everything back up together and bob's your uncle .... I was told that the pain would be controlled by strong analgesics for a few days after which domestic painkillers would suffice, I will be fed by a tube into my stomach and would start to eat for myself only 3 or 4 days in, the scars would not be evident and the risks of droopy lip and stuck tight closed mouth were easily exaggerated. It didn't sound too bad!!
The ray-gun man then outlined his approach. They will take out any questionable teeth right round to the upper and lower incisors. After that they zap me, every day and sometimes twice a day except weekends. Everything is fine for the first week or two - then things start getting unpleasant. The mouth begins to get ulcerated, the cheek feels sunburnt, the mouth dries up, the tongue gets swollen, the place where the lips meet dries and cracks, the beard stops growing on one side of the face, hair drops out at the nape of the neck where the rays emerge and more and more and still 3 weeks of torture to go. I could see me lying in bed in the morning with a mouth that felt as though it had been filled with boiling tar, not wanting to drive down to Cheltenham for yet another dose. I found it hard to imagine that anyone would choose this option if there was a choice. The ray-zapping causes such damage to the jaw-bone and soft tissues that future injuries will heal only very slowly if at all - hence the prior removal of teeth and the ban on boxing for the future. I really don't think I want to tackle this!
I asked about 'alternative therapies' and drew a gallery of blank, somewhat disapproving faces at the suggestions of hydrogen peroxide therapy, treatment with urea or shark cartilidge, ultra huge doses of vitamins and other dietary variations. Then I mentioned light therapy. This drew a more approving response - "We don't do that here!" Not too helpful you might think, I certainly did - but they did give me the contact details of a consultant at University College Hospital - London. Now you might not believe in omens or fate or destiny or anything like that but I could not but fail to be heartened by the fact that I was born in UCHL. They managed to get that bit of my life right so maybe there's hope now as well. I got in touch and by the miracles of fax, alumni, badgering, answer phones and hot pursuit I managed to get an appointment next Wednesday afternoon (18th July). The doctor is the head of the National Medical Laser Institute but is also an oral surgeon so hopefully I'll get clear, unbiased advice about the pros and cons of each treatment. The Photo-dynamic therapy sounds as though it could be helpful. They inject me with a light sensitive dye that attaches to cancerous cells only. Once it's had time to circulate they blast the affected area with high intensity light. The dye then gives up an oxygen atom which goes on to kill the cancerous cells. Healthy tissue is not effected and there is only one treatment. Downsides - the cheek will feel burnt for a while and I will remain photo-sensitive for about 6 weeks which means I will have to avoid bright lights, sunshine and so on. Another problem is that the light can only penetrate about a quarter of an inch so if the tumour is too deep the treatment will not be appropriate. At the least I hope to get unbiased advice about which type of treatment is more appropriate.
After that - back to Worcester Royal Infirmary on Tuesday 24th for a final decision if it hasn't been taken already. So, more waiting, a second opinion, an alternative treatment which, if appropriate might be less traumatic and invasive than anything else on offer and a good few weeks of unpleasantness to look forward to. And plenty of hope.
If you're in a similar position to me - good luck.
Ron
Sunday, 8 July 2007
Starting Points
Where do I start?
Fears? Hopes? Details? Denials? Resignation? Expectations? Anticipation?
There's a lot to think about and much to hope for. This is going to change my life but in ways I cannot yet foresee. Astonishingly, there seems to be a part of me that is quite accepting of the fact that cancer has been diagnosed, the same part that says 'well, just get on with it.' It may be the same part that expects me to make a full recovery. Oh I know I may come out with some minor surgical mutilation but other than that I don't expect this inconvenience to stop me enjoying my imminent retirement. On that note maybe I should start a Retirement Blog as well as I have no idea how I'm going to cope with that either.
Well, for those of you who want to know, here is the story so far:-
February 2006 - I was aware of an ulcer in my left cheek (my handsome side) that wasn't healing. I mentioned it to my dentist at my annual check up. (Or did I just say to myself 'I must mention this to my dentist'?) However nothing came of this and I just waited longer for it to heal.
Summer/Autumn 2006 - the ulcer had still not healed and I mentioned it to my dad when he enquired after my health. A week or two later he advised me to have it checked up on as 'they can go cancerous and there's a history of cancer in our family.'
Autumn 2006 - started to self-treat the ulcer with over the counter jells and mouth washes. Chemist advised me to have it looked at it it hadn't healed within a few weeks.
February 2007 - back to the dentist. She had no record of me mentioning the ulcer the previous year - maybe it had only been an intention. This year she did feel it needed looking at. She squeezed it, felt under my jaw, prodded and poked and made encouraging sounds. I was not panicked when I left.
As It happened I was also being referred for some physiotherapy on my knee at the same time so when I had heard from the physio dept but not from the facial-surgical I started badgering the hospital - something I would advise anyone to do as it is my experience that they can take months to just pass your notes from one dept to another!
April 2007 - first appointment with the facial surgeons. Inspection by junior and consultant sounds encouraging. No signs of cancer, probably just infection or fungal complaint ... take these pills twice a day and come back in two weeks.
May 2007 - no change. Stop taking pills. Prodded and felt by more doctors - might be lichen planus but need a biopsy to confirm. Come back in four weeks as there's no essential urgency.
June 2007 - biopsy. Not unpleasant although that normal instinctive reaction to having needles stuck in you kicked in. I lay there in the chair with fists clenched, body rigid, practising controlled breathing. OK, all done, come back for the results in a couple of weeks.
3 days later, a phone call, can you come in next Wednesday? Warning Bells, WARNING BELLS, ALARM BELLS!! and an anxious wait.
The next Wednesday - arrive at the dept to find NO-ONE else there. The place is ghostly quiet which is a bit unsettling to start with. Then receptionists and nurses appear and Elaine and I are ushered into an examination room. Elaine had come as an extra pair of ears, I have a tendency (I'm told) to only hear what I want to hear so I thought it a good idea to have a back up.
The consultant-surgeon-master-cutter arrived and re-examined my mouth and cheek, murmured and mumbled some incantations to himself, went out, came back, re-examined the notes and then started blathering on about something or other.
I was getting to the point of a murder defence on the groups of incompetent obfuscation when he dropped in the C word. I was more disappointed than surprised. I had hoped until that point that the problem was rooted elsewhere.
Then began the detailing of the position. It was a squamsomething cancer and that was good as it was slow growing and not particularly invasive. It was an awkward and inconvenient place to have a cancer as access was so restricted so if they were going to remove it by surgery they would have to peel my cheek back to get to it. However that wasn't all bad as they would then be able to have ready access to the lymph nodes under my jaw should any of them show signs of the cancer spreading. They would have to remove a significant part of the inside of my cheek and replace it with a skin graft from my hairy arm, another problem and then I would have to shave inside my mouth (only kidding - I think). The operation would take 8 hours and then up to two weeks recovery in hospital. But I shouldn't worry as reconstructive surgery was very good these days and all I would be left with was a dry mouth, droopy lip and the inability to open my mouth wide enough to brush my teeth or bite into an apple.
Alternatively it might be possible to treat it with radio-therapy. This would involve weekly visits (daily according to Elaine - it was a good job that I took her!) to Cheltenham,about 30 miles away. There they would give me tooth-killing doses of ray-gun emissions and hope that I didn't disappear Dalek like in a flash of green light. Just to spare my teeth they would remove all my left side molars and pre-molars before the treatment. Although it wasn't mentioned, I imagine they will replace them with something after the treatment is over, otherwise I will be searching the car boot sales for shark's teeth necklaces or something similar.
This was a week and a half ago.
Since then I've had x-rays of my jaw and chest (how ominous is that!?), blood tests and an MRI scan of my neck. Then, this Tuesday, we go to get the results and treatment must start by around the 25th July to comply with government deadlines. For those of you not in the UK - I get all this free of charge. Well, free at point of delivery because of course I've been paying for it all my working life through our National Insurance Scheme.
In the meantime I've been reading and so has Elaine. We've looked at alternative therapies, alternative treatment centres, peoples blogs, advice, questions, support groups and Cancer Charities. I've told my colleagues and am slowly getting round to telling friends and neighbours (which I have found much harder).
So early on it's hard to give advice but - for what it's worth try the following:-
Regard cancer as an illness not a death sentence.
Tell people - their warmth, affection and support is almost a cure in itself.
Move quickly - I didn't and now wish I had. Better to get it wrong at an early stage than right later on.
Chase the bl...y hospital. If you don't hear soon, ring them up and ask if they've lost your notes. You're so surprised not to have heard already. (And you've heard how incompetent they can be
OK - that's it for now - if you're suffering - good luck, stay smiling and be strong.
Ron
Fears? Hopes? Details? Denials? Resignation? Expectations? Anticipation?
There's a lot to think about and much to hope for. This is going to change my life but in ways I cannot yet foresee. Astonishingly, there seems to be a part of me that is quite accepting of the fact that cancer has been diagnosed, the same part that says 'well, just get on with it.' It may be the same part that expects me to make a full recovery. Oh I know I may come out with some minor surgical mutilation but other than that I don't expect this inconvenience to stop me enjoying my imminent retirement. On that note maybe I should start a Retirement Blog as well as I have no idea how I'm going to cope with that either.
Well, for those of you who want to know, here is the story so far:-
February 2006 - I was aware of an ulcer in my left cheek (my handsome side) that wasn't healing. I mentioned it to my dentist at my annual check up. (Or did I just say to myself 'I must mention this to my dentist'?) However nothing came of this and I just waited longer for it to heal.
Summer/Autumn 2006 - the ulcer had still not healed and I mentioned it to my dad when he enquired after my health. A week or two later he advised me to have it checked up on as 'they can go cancerous and there's a history of cancer in our family.'
Autumn 2006 - started to self-treat the ulcer with over the counter jells and mouth washes. Chemist advised me to have it looked at it it hadn't healed within a few weeks.
February 2007 - back to the dentist. She had no record of me mentioning the ulcer the previous year - maybe it had only been an intention. This year she did feel it needed looking at. She squeezed it, felt under my jaw, prodded and poked and made encouraging sounds. I was not panicked when I left.
As It happened I was also being referred for some physiotherapy on my knee at the same time so when I had heard from the physio dept but not from the facial-surgical I started badgering the hospital - something I would advise anyone to do as it is my experience that they can take months to just pass your notes from one dept to another!
April 2007 - first appointment with the facial surgeons. Inspection by junior and consultant sounds encouraging. No signs of cancer, probably just infection or fungal complaint ... take these pills twice a day and come back in two weeks.
May 2007 - no change. Stop taking pills. Prodded and felt by more doctors - might be lichen planus but need a biopsy to confirm. Come back in four weeks as there's no essential urgency.
June 2007 - biopsy. Not unpleasant although that normal instinctive reaction to having needles stuck in you kicked in. I lay there in the chair with fists clenched, body rigid, practising controlled breathing. OK, all done, come back for the results in a couple of weeks.
3 days later, a phone call, can you come in next Wednesday? Warning Bells, WARNING BELLS, ALARM BELLS!! and an anxious wait.
The next Wednesday - arrive at the dept to find NO-ONE else there. The place is ghostly quiet which is a bit unsettling to start with. Then receptionists and nurses appear and Elaine and I are ushered into an examination room. Elaine had come as an extra pair of ears, I have a tendency (I'm told) to only hear what I want to hear so I thought it a good idea to have a back up.
The consultant-surgeon-master-cutter arrived and re-examined my mouth and cheek, murmured and mumbled some incantations to himself, went out, came back, re-examined the notes and then started blathering on about something or other.
I was getting to the point of a murder defence on the groups of incompetent obfuscation when he dropped in the C word. I was more disappointed than surprised. I had hoped until that point that the problem was rooted elsewhere.
Then began the detailing of the position. It was a squamsomething cancer and that was good as it was slow growing and not particularly invasive. It was an awkward and inconvenient place to have a cancer as access was so restricted so if they were going to remove it by surgery they would have to peel my cheek back to get to it. However that wasn't all bad as they would then be able to have ready access to the lymph nodes under my jaw should any of them show signs of the cancer spreading. They would have to remove a significant part of the inside of my cheek and replace it with a skin graft from my hairy arm, another problem and then I would have to shave inside my mouth (only kidding - I think). The operation would take 8 hours and then up to two weeks recovery in hospital. But I shouldn't worry as reconstructive surgery was very good these days and all I would be left with was a dry mouth, droopy lip and the inability to open my mouth wide enough to brush my teeth or bite into an apple.
Alternatively it might be possible to treat it with radio-therapy. This would involve weekly visits (daily according to Elaine - it was a good job that I took her!) to Cheltenham,about 30 miles away. There they would give me tooth-killing doses of ray-gun emissions and hope that I didn't disappear Dalek like in a flash of green light. Just to spare my teeth they would remove all my left side molars and pre-molars before the treatment. Although it wasn't mentioned, I imagine they will replace them with something after the treatment is over, otherwise I will be searching the car boot sales for shark's teeth necklaces or something similar.
This was a week and a half ago.
Since then I've had x-rays of my jaw and chest (how ominous is that!?), blood tests and an MRI scan of my neck. Then, this Tuesday, we go to get the results and treatment must start by around the 25th July to comply with government deadlines. For those of you not in the UK - I get all this free of charge. Well, free at point of delivery because of course I've been paying for it all my working life through our National Insurance Scheme.
In the meantime I've been reading and so has Elaine. We've looked at alternative therapies, alternative treatment centres, peoples blogs, advice, questions, support groups and Cancer Charities. I've told my colleagues and am slowly getting round to telling friends and neighbours (which I have found much harder).
So early on it's hard to give advice but - for what it's worth try the following:-
Regard cancer as an illness not a death sentence.
Tell people - their warmth, affection and support is almost a cure in itself.
Move quickly - I didn't and now wish I had. Better to get it wrong at an early stage than right later on.
Chase the bl...y hospital. If you don't hear soon, ring them up and ask if they've lost your notes. You're so surprised not to have heard already. (And you've heard how incompetent they can be
OK - that's it for now - if you're suffering - good luck, stay smiling and be strong.
Ron
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