Well, that's the first fortnight almost over and so far it's not been so bad.
It's a little like going back to work. The same journey every day to the same institution. Seeing the same people in the same rooms and going through the same routines. I've just swapped one timetable for another. Quite a lot of time is spent sitting around waiting to be called - rather like waiting for an appointment with a headteacher. At least I don't have to keep this up for another 35 years!
Finally, when my turn comes, when the machine works, when the bloods have been taken and reviews completed, I'll go off to be zapped. The Dalek machine is located in a room decorated with lasers and with walls of double thickness that protect the whole world from millions of volts of x-rays, apart from me. The machine looks just like something that would be found in in an evil clone of the Tardis. It is solid and thick and heavy and looks like an anonymous container for extremely powerful magic. I have to lie on a bed that moves up and down, back and forth and from side to side. Then there is the zapping bit which rotates itself and then bits rotate within the rotations. All together the whole contraption seems to move in about six dimensions at one time.
Once I'm lying down with my head on the correct rest and my legs elevated, the plastic mask is clamped over my face. My spine is straightened and then two Dalek slaves come and mutter all sorts of mystical incantations like 'lateral splice' and ' anterior exit' and 'entry dose' take out mysterious . Whilst they are doing this they use mysterious shards of plastic to reflect and block out laser rays checking that the are focused and directed in the right directions. The lights go off and on and off and on or the machine loops and the bed swings until, after movements so slight that they hardly seem to matter, they pronounced their handiwork satisfactory and leave the room. Meanwhile l lie, fixed to the torture table by my face. Suddenly the machine starts chanting, "Exterminate, exterminate, exterminate, exterminate, exter, exter, exter, exter" until, after about 10 seconds all falls silent again. Silently the Dalek slaves creep back into the room and all the machinery swings and rotates and realigns until they are ready to exterminate again. They shoot me from four directions all together, about thirty seconds of zapping all told ... and that's it until the next day. All that travelling and all that waiting for a thirty second zap.
I can't say I haven't been prepared for the results. Even a notice on the receptionist's desk advertises anti-nausea drops. The 'Peg' ... my pierced stomach feeding tube, was put in place to be used when I couldn't eat because the therapy might make my mouth and throat too sore to eat and swallow. I met the Dalek who told me how it would effect my face and mouth. The mask-makers told me how bad it could get, the review nurse, the dietician and even the radiographers all give gentle warnings and ask every day how I am feeling. I get a very strong impression that everyone expects it to be pretty horrid before it finishes. Well sod that for a bunch of bananas - I'm quite determined that it ain't going to be that bad.
And so far so good. There are effects but they are more inconvenient and uncomfortable than painful. I am still eating, drinking and swallowing. My skin has started to redden a bit but just today one of the Dalek slaves commented that my skin was holding up well - there's some hope there then. In general the most pronounced effect is that things are a little more swollen and consequently a little more stiff than they were. I can feel a tightness on the left side of my throat when I swallow. My stiffer neck means that turning my head to the right is a bit more difficult which makes it difficult to look over my shoulder when driving. The more sensitive parts - lips, tongue and cheek, feel a bit 'fizzy' a lot of the time and especially just after treatment.
By next Tuesday the treatment will be half over. I was told that the first two weeks would be ok and that the effects would only become noticeable towards the end of this time. Still, with two weeks gone there's only another three to go so the end is in sight.
Well, that's all for now. Another trip to see the Dalek tomorrow and then I get a weekend break. I wonder what exciting things could be in store.
Tuesday 23 October 2007
Saturday 6 October 2007
Off to meet the Dalek
Oh well - the dates have been set, the treatment programmed and the times allocated. It sounds as though I'm going to get the full works!
I went down to Cheltenham last Wednesday to be fitted for an 'immobilisation mask'. This will be a clear plastic device that fits over my head and stops me from moving my head whilst the Dalek zaps me from his ray-gun. It's a mucky process involving cold alginate which is a fairly quick-setting goo that gets slapped all over your face (except nose and mouth). This is then covered with Plaster of Paris bandages to harden it up and hold it firm. My hair was wrapped in cling film and then the goo applied. It covered everything, including my eyes. It was OK for a while - I'm used to wearing a mask when diving, and I didn't even mind the blacking out on my eyes. It was as the Plaster of Paris hardened and tightened and started pressing on my throat making swallowing difficult that I had to take some deep breaths and remind myself to stay calm. Fortunately the therapists kept talking to me and each other; had I been left all alone with no idea how long I would have to stay like this I could have been quite freaked. Following its removal it's used as a mould to make a tight-fitting, rigid mask. It's to make sure that the rays hit the same (right) spot every time thus building up the exposure and destruction. (Apparently because the cancer cells grow more quickly they are also killed more quickly than healthy cells.) After the treatment the healthy cells slowly regenerate - over a period of months - and this is why one is left feeling exhausted for so long after the treatment.
The schedule is going to be punishing. I have to go down to Cheltenham five days a week for the next 5 weeks. I start on October 15th and finish a month later on November 16th. I am due there at 9.00am some mornings and by 10.00am on all the other days. The retirement lie-ins, late starts and midnight bed-times will be out the window. On Tuesdays I have to have two loads of zapping! The first at 9.00am and then again around 3.00pm - as I said, the full works. The radio therapist who fitted me out for my mask said she thought I'd be OK for the first two weeks but that after that I'd be tired and in some discomfort - enough for me not to want to go gadding around the Cotswolds between the Tuesday treatments.
There is a doctor down in Bristol who claims to use a really sensitive test that can identify tiny amounts of cancer in your body. This is a new and unorthodox form of testing, not yet adopted by the NHS. I am tempted to go and have a test but I don't know what I'll do if her tests prove negative. Refuse treatment or go ahead regardless - the belt and braces approach! The surgery was traumatic but I have to say that the zapping sounds even worse. Even so I'm now a bit p***ed off. I could have had radio-therapy as the primary treatment and this would have avoided the need for any surgery at all. No neck dissections, no lip splits, no skin grafts and so on. And once it was finished there could be no surgery as the tissue would have been too damaged by the zapping. Easily seen with hindsight but was it really so hard to diagnose and recommend once they knew it had got into my lymph glands? I'm not a cancer expert yet the decision was left to me. Those presenting their cases for surgery or radio-therapy were not neutral but experts in their fields with, no doubt, NHS targets and standards to achieve. Did this guide them in their advice and will it colour their views of alternative recommendations that I might receive from Doctor Bristol?
I guess that, in the end, I'll follow the tried and tested NHS route. It might be a pain but at least its known to work. So wish me luck and think of me - I'm not going to enjoy this!
Ron
I went down to Cheltenham last Wednesday to be fitted for an 'immobilisation mask'. This will be a clear plastic device that fits over my head and stops me from moving my head whilst the Dalek zaps me from his ray-gun. It's a mucky process involving cold alginate which is a fairly quick-setting goo that gets slapped all over your face (except nose and mouth). This is then covered with Plaster of Paris bandages to harden it up and hold it firm. My hair was wrapped in cling film and then the goo applied. It covered everything, including my eyes. It was OK for a while - I'm used to wearing a mask when diving, and I didn't even mind the blacking out on my eyes. It was as the Plaster of Paris hardened and tightened and started pressing on my throat making swallowing difficult that I had to take some deep breaths and remind myself to stay calm. Fortunately the therapists kept talking to me and each other; had I been left all alone with no idea how long I would have to stay like this I could have been quite freaked. Following its removal it's used as a mould to make a tight-fitting, rigid mask. It's to make sure that the rays hit the same (right) spot every time thus building up the exposure and destruction. (Apparently because the cancer cells grow more quickly they are also killed more quickly than healthy cells.) After the treatment the healthy cells slowly regenerate - over a period of months - and this is why one is left feeling exhausted for so long after the treatment.
The schedule is going to be punishing. I have to go down to Cheltenham five days a week for the next 5 weeks. I start on October 15th and finish a month later on November 16th. I am due there at 9.00am some mornings and by 10.00am on all the other days. The retirement lie-ins, late starts and midnight bed-times will be out the window. On Tuesdays I have to have two loads of zapping! The first at 9.00am and then again around 3.00pm - as I said, the full works. The radio therapist who fitted me out for my mask said she thought I'd be OK for the first two weeks but that after that I'd be tired and in some discomfort - enough for me not to want to go gadding around the Cotswolds between the Tuesday treatments.
There is a doctor down in Bristol who claims to use a really sensitive test that can identify tiny amounts of cancer in your body. This is a new and unorthodox form of testing, not yet adopted by the NHS. I am tempted to go and have a test but I don't know what I'll do if her tests prove negative. Refuse treatment or go ahead regardless - the belt and braces approach! The surgery was traumatic but I have to say that the zapping sounds even worse. Even so I'm now a bit p***ed off. I could have had radio-therapy as the primary treatment and this would have avoided the need for any surgery at all. No neck dissections, no lip splits, no skin grafts and so on. And once it was finished there could be no surgery as the tissue would have been too damaged by the zapping. Easily seen with hindsight but was it really so hard to diagnose and recommend once they knew it had got into my lymph glands? I'm not a cancer expert yet the decision was left to me. Those presenting their cases for surgery or radio-therapy were not neutral but experts in their fields with, no doubt, NHS targets and standards to achieve. Did this guide them in their advice and will it colour their views of alternative recommendations that I might receive from Doctor Bristol?
I guess that, in the end, I'll follow the tried and tested NHS route. It might be a pain but at least its known to work. So wish me luck and think of me - I'm not going to enjoy this!
Ron
Thursday 4 October 2007
Ron Bites his Tongue
One of the pleasures of retirement!
Elaine and I took a couple of days off last week and went up to Yorkshire. We stayed at one of the loveliest B&Bs we've ever come across in England - all elegance and comfort http://www.sunnybankguesthouse.co.uk/ . It was a novel luxury to be able to shoot off mid working-week and enjoy time away without feelings of guilt about missing work, playing hooky or having to be elsewhere. We'd gone specifically to visit the Yorkshire Sculpture Park www.ysp.co.uk in the grounds of Bretton Hall which is now part of the University of Leeds. It's a magnificent setting with glorious views over the Yorkshire countryside and the landscaped grounds which include a huge lake in the bottom of the valley. It could easily take several hours to walk round the whole estate but our intention was to visit a specific exhibition of new works by Andy Goldsworthy
http://images.google.co.uk/images?q=andy+goldsworthy+art&ndsp=20&svnum=10&um=1&hl=en&safe=off&rls=GGLD,GGLD:2004-05,GGLD:en&start=0&sa=N
He is an 'environmental artist' who works with natural 'found' materials like leaves, twigs, thorns, stones, logs, mud, snow and so on. His works are often ephemeral, sometimes lasting only until the next tide, rainfall or strong wind before disappearing without leaving a trace - apart from photographs.
Surprisingly, when we arrived we ran into a wide selection of school parties. There were nippers who could not have been more than six or seven and students who were well beyond school leaving age and all sorts in between. It was really hard not being a teacher! There was a temptation to step in and ask to see what work they were doing or enquire as to what they thought of what they were seeing. It was easy to pick out those who needed special attention. It was clear that some students were fascinated in the art works whereas others were simply fascinated by each other and a few merely fascinated in themselves. Some were producing interesting artwork or poetry, others showed no interest. Generally their behaviour was fine, few were willing to acknowledge the presence of other visitors (like us), but we heard no rudeness or defiance - kids do seem better out of school but perhaps they were hand-picked. We bit our tongues, left them to their teachers and helpers but found the enthusiasm of the nippers and the 'coolness' of the students amusing and attractive.
That night we went out to eat. I'd been on solid food for a short time so I thought I'd treat myself - I went for a rib-eye steak which the landlord assured me would be soft and tender. It was and cutting it up to small enough lumps was fine. I could get pieces into my mouth easily enough and position them so I could chew. What a treat! The steak was beautiful and eating it felt like another step back towards normality. Admittedly I was rather slow, I couldn't shovel the food in but I was eating steak and enjoying it. The greatest difficulty was manoeuvring food around inside my mouth. We all do it all the time when we are eating. We use our tongue and to a lesser extent lips and cheeks, to make sure we have chewed sufficiently and that no food is left stuck in less accessible parts of the mouth. For me this was really hard and sometimes I had to resort to using my little finger. We also naturally co-ordinate these movements with our chewing and it is surprising how sophisticated this co-ordination is - done with never a thought.
Unfortunately this is no longer working for me although all of me thinks it should be. The result was that in the middle of auto-pilot chewing of my steak I suddenly found that I was eating my own tongue! Manoeuvring food (or trying to) had put my tongue in a new place and when I chewed ... whack. Of course I stopped chewing before doing any serious damage but three or four bites, always in the same place on the tongue meant that it swelled up and is was likely to get chewed again - what a pain! I'll find a work around for this in time even if it means having another tooth or two extracted - not a pleasant prospect but better than wrecking my tongue. This will have to be done before being zapped by the Dalek as after being zapped wounds heal only very slowly so extractions will be out of the question. And this gives me a very short deadline as the Dalek has decided now when he wants to see me. More about this next time.
Elaine and I took a couple of days off last week and went up to Yorkshire. We stayed at one of the loveliest B&Bs we've ever come across in England - all elegance and comfort http://www.sunnybankguesthouse.co.uk/ . It was a novel luxury to be able to shoot off mid working-week and enjoy time away without feelings of guilt about missing work, playing hooky or having to be elsewhere. We'd gone specifically to visit the Yorkshire Sculpture Park www.ysp.co.uk in the grounds of Bretton Hall which is now part of the University of Leeds. It's a magnificent setting with glorious views over the Yorkshire countryside and the landscaped grounds which include a huge lake in the bottom of the valley. It could easily take several hours to walk round the whole estate but our intention was to visit a specific exhibition of new works by Andy Goldsworthy
http://images.google.co.uk/images?q=andy+goldsworthy+art&ndsp=20&svnum=10&um=1&hl=en&safe=off&rls=GGLD,GGLD:2004-05,GGLD:en&start=0&sa=N
He is an 'environmental artist' who works with natural 'found' materials like leaves, twigs, thorns, stones, logs, mud, snow and so on. His works are often ephemeral, sometimes lasting only until the next tide, rainfall or strong wind before disappearing without leaving a trace - apart from photographs.
Surprisingly, when we arrived we ran into a wide selection of school parties. There were nippers who could not have been more than six or seven and students who were well beyond school leaving age and all sorts in between. It was really hard not being a teacher! There was a temptation to step in and ask to see what work they were doing or enquire as to what they thought of what they were seeing. It was easy to pick out those who needed special attention. It was clear that some students were fascinated in the art works whereas others were simply fascinated by each other and a few merely fascinated in themselves. Some were producing interesting artwork or poetry, others showed no interest. Generally their behaviour was fine, few were willing to acknowledge the presence of other visitors (like us), but we heard no rudeness or defiance - kids do seem better out of school but perhaps they were hand-picked. We bit our tongues, left them to their teachers and helpers but found the enthusiasm of the nippers and the 'coolness' of the students amusing and attractive.
That night we went out to eat. I'd been on solid food for a short time so I thought I'd treat myself - I went for a rib-eye steak which the landlord assured me would be soft and tender. It was and cutting it up to small enough lumps was fine. I could get pieces into my mouth easily enough and position them so I could chew. What a treat! The steak was beautiful and eating it felt like another step back towards normality. Admittedly I was rather slow, I couldn't shovel the food in but I was eating steak and enjoying it. The greatest difficulty was manoeuvring food around inside my mouth. We all do it all the time when we are eating. We use our tongue and to a lesser extent lips and cheeks, to make sure we have chewed sufficiently and that no food is left stuck in less accessible parts of the mouth. For me this was really hard and sometimes I had to resort to using my little finger. We also naturally co-ordinate these movements with our chewing and it is surprising how sophisticated this co-ordination is - done with never a thought.
Unfortunately this is no longer working for me although all of me thinks it should be. The result was that in the middle of auto-pilot chewing of my steak I suddenly found that I was eating my own tongue! Manoeuvring food (or trying to) had put my tongue in a new place and when I chewed ... whack. Of course I stopped chewing before doing any serious damage but three or four bites, always in the same place on the tongue meant that it swelled up and is was likely to get chewed again - what a pain! I'll find a work around for this in time even if it means having another tooth or two extracted - not a pleasant prospect but better than wrecking my tongue. This will have to be done before being zapped by the Dalek as after being zapped wounds heal only very slowly so extractions will be out of the question. And this gives me a very short deadline as the Dalek has decided now when he wants to see me. More about this next time.
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