Hello Friends: I have to tell you that this last month has been the worst of the entire illness and probably of my life! The inflammation problem that I wrote about in the last entry got worse and worse until, a week or so before Christmas it had become virtually impossible to swallow anything. Eventually, after quite a lot of pressing, I had to go back into hospital to have a peg feeding tube fitted.
To do this they slip a little camera down the throat and into the stomach. The camera has a light on which can be seen from outside and a hole is punched (under local anaesthetic) through the stomach, a tube inserted and a clip fixed inside to stop the tube coming out. The tube is used for squeezing food and fluids through and at least keeps you healthy whilst swallowing is impossible. That was the theory. The reality was that my throat was so constricted that the surgeon could not even get the paediatric size camera down my throat, so they sent me home for the weekend. There were two other options. The first, and preferable, was to perform a minor surgical procedure and insert the peg tube from the outside and stitch it in place rather than clip from inside. The problem was finding a theatre slot, a surgeon and getting it done before Christmas. They couldn't so they went to plan C. Plan C uses an older technique of pushing a very narrow tube up the nose, down the throat and into the stomach. This then works in the same way as the peg but rather more uncomfortably as there is a permanent tube up the nose and down the throat. This causes almost constant saliva production and so I am constantly have to cough up and spit out saliva - a process which I'm sure my friends, family and visitors find distressing.
We are pushing hard to move on to the peg and I'm hoping to go back into hospital soon to have this put in the the tube taken out of my nose. I will feel much better about life when I don't have to walk around looking like some bizarre character out of a Startrek movie and feeling as though I've got a permanent restriction in my throat. With a great deal of luck the swelling will have begun to die down and I'll be able to eat,drink and swallow again.
We went to see the doctor in the hospital a couple of days ago. He was reasonably encouraging. They have seen the results of PDT before and know that inflammation, especially on top of surgery and radiation scarring, can take a long time to calm down. I'm taking big doses of steroids to try and get the swelling under control but there's little sign that this is working other than, perhaps, to keep the swelling in check. The one encouragement is that if all this swelling is due to the cancer cells being killed off, and that was the intention, then there's a lot of cancer cell death going on.
But in the meantime I have to sit still five times a day while Elaine uses syringes and mixtures and bottles and dishes to squirt potions, solutions and medications up my nose and down into my stomach. It's uncomfortable for her and depressing for me. Let's hope we can move on soon.
I don't want everything to sound glum and negative so I will move on. The NHS has been pretty supportive over all of this. I suppose they come into their own when one is really ill rather than just suffering from a cold or a broken finger. We've had a lot of support from the district nurses, the hospital staff, the hospice staff, the GP the nutitionalists and many others who have expressed and care and concern in different ways. Their help and support has been encouraging and occasionally productive and we are using whoever we can to speed up the process of getting the peg put in.
Apart from that we have determined that our lives will go on as normally as possible and that has included all those post retirement plans for house and home that have evolved over the last few years. So the kitchen is having a mini re-vamp. Having replaced the dishwasher, hob and oven we are now waiting for new work surfaces to be fitted. We have gone for an unusual solution. It's a kind of reconstituted granite veneer which is stuck over the existing surfaces. As it's only thin there is no weight problem and the existing kitchen does not have to be ripped apart. The whole fitting can be done in a day and we're hoping that it will be done any day now. At the same time we'll have a new sink and tap as Elaine has never liked the resin sink that was originally installed as it always stained so easily.
Meanwhile I've been re-fitting and re-arranging our utility room. This has been necessary for a couple of years - since we had the conservatory fitted in fact. So far it's gone well and I managed to find a small drainer sink that just fits the space available - so if anyone wants a single, stainless steel sink with double drainer and taps just let me know before they end up at the recycling centre. We're going to replace our venerable washing machine as well. Our existing Blomberg was the Which Best Buy 21 years ago, has proved to be exactly that. It's had a few minor problems but nothing that a local repair man couldn't sort out for us. It's been efficient and reliable since we first had the extension built. Don't go for Blomberg today - it's a very different make as we discovered when we bought a Blomberg dishwasher from Currys' (their own brand as we were told) - it was of much poorer quality.
We've also bought a new telly, gone SKY (which I swore I never would). I began thinking that if I was going to be more ill I'd be likely to be spending time at home and that I'd want to be able to distract myself watching the live Rugby Union and Test Cricket. Even more amazingly we've bought a games console. Now I never was a computer games player but we bought a Wii and although playing tennis and golf and bowling on it is pretty easy it does give more of a physical workout than sitting on the sofa - the tennis in particular is quite demanding! Elaine want's to add to the interactive nature by getting a Wii fit board to help us exercise and keep fit. The only problem is that there don't appear to be any available in the country! Does anyone have any experience of this kit? The reviews on Amazon make it sound astonishing!
Well, that's where we are now. I'm either getting better or not. I'm certainly suffering at the moment but am hoping and hoping that, for the time being at least things are going to get easier and, who knows, perhaps recovering. I'll let you know. In the meantime, if anyone wants to visit you'll be welcome. I get quite tired so don't plan on staying too long but there will always be a cuppa and hopefully some nibbles. Talking is a bit difficult still, especially with this tube down my throat so come and entertain me! I'll join in as best I can.
Hope you all had a great Christmas and let us wish you all the very best for the New Year.
Ron and Elaine.
Wednesday 31 December 2008
Friday 28 November 2008
The Maverick Fringe
Hello again friends. Welcome to the outer fringes of health care! As you know, after the NHS write off in September, Elaine and I have been exploring all those whacky, weird and wonderful claims made by 'alternative health practitioners'. As far as I can tell they are all properly qualified medical doctors who have moved outside the NHS for reasons of personal beliefs, a desire to specialise or some other personal motive. What they offer is a selection of alternative, new, probably unproven approaches, in my case to dealing with cancer. What they don't offer is any guarantee of success although they do talk in those terms. The treatments range from the mundane (take these pills) to the bizarre, (drink liquid extract of volcanic rock or lie on a bed that will raise your body temperature to about 102F.)
It must be four weeks since I finished the first of these treatments. That was the PDT treatment and I'm really suffering what I hope are the after effects.
For the past week or so I have an awful taste in my mouth. Sharp, sour, metallic and permanent. It only goes when I eat and that is only temporary relief. I have inflammation in my throat which is making it tricky to swallow and the left side of my neck feels hard and swollen. Hopefully these are the after effects of the PDT treatment and at least, if so, they show that the treatment has done something. Of course, there's always the worse possibility that a new tumour is growing in my neck and it is that which is causing the restriction and foul taste. For the first time since I found out about the cancer the ordinary process of getting through a day has become, literally, distasteful. Don't get me wrong, I'm still finding a lot to enjoy, life is still worth living and I'm finding plenty to do but living with this taste cannot be ignored.
The Winchester Maverick thought that the inflammation was likely to last until towards the end of December before it starts to fade out - I really hope he's right. He has a mysterious computer programme that looks like a graphic artists workshop but which he claims is a spin-off from the Russian Space Programme. It shows every organ in the body and is accompanied by musical scales. I have wear headphones and face a detector whilst the tones are played in my ears. Apparently the tones stimulate a magnetic response in the body's organs and by measuring the magnetic fields an indication may be gained as to the health and function of each organ. Apparently the WM can see that by body is now dealing with dead cancer cells. This doesn't mean that all the cancer cells are dead but he is satisfied that it's a good start.
In the meantime I've had to change my diet and start popping pills and dietary supplements like nobody's business. I'll be on about 10 or 15 things every day before long. Some of these are meant to make life difficult for the cancer, others are meant to boost my immune system or support my body's organic processes. It's impossible to know whether anything is working so it's a question of try anything while I can. One result of this philosophy may be a 'holiday' to Germany in the New Year for a newish treatment - dendritic cell vaccine. This is a vaccination that is specifically designed to match my cancer. It is an immune system booster and so programmes blood cells to recognise and attack my cancer cells. Again, there is no guarantee that it will work but if it stands a chance I'll try it. I've only ever spent one day in Germany and would likely have to stay for a week so we thought we might as well make a holiday of it and do a bit of exploring. The clinic is in a small German town called Gottingen. This is in Saxony between Hannover and Leipzig, so if anybody has any suggestions as to things we could do or see whilst in the area let us know.
After that it will be back to England and then three sets of follow up vaccinations at the Winchester clinic. The big problem with my cancer is that it is so hidden. No-one can tell whether it's gone or not, whether it will reoccur or not. The only way to know whether it's there is to wait and see.
Rather than do that I will probably look at the mistletoe treatment at the clinic near Bewdley. So I still have a long way to go and many options open but no guarantee that anything will work to save me. I will be very much happier if I can feel the swelling in my throat getting less and the taste going. At the moment the taste, if anything, is getting worse although the swelling has checked. Still, I'm trying hard to whack the cancer while I can. Although the docs of the NHS seem to feel that little but conventional treatments will work, there are others out there holding out far more hope and making a lot of money out of offering help. We'll have to see. Not everybody survives but I'm not going to get to that stage without a fight.
Last Wednesday we had an appointment at the Royal Marsden Cancer Hospital in London. We drove down on Tuesday and treated ourselves to a night in an Earl's Court hotel. It was surprisingly comfortable. A lovely building, nicely appointed public rooms and very quiet. Our room was certainly compact - although the en-suite was a good size - but it was tastefully decorated and spotlessly clean. It was within walking distance of the hospital which made getting there much easier than if we had stayed in Brentford. The doctor's we met were lovely, helpful and wanted to do everything they could to help. Unfortunately all the had to offer was more cutting, burning or poisoning. They gave us the impression that their conventional therapies were the safest way to go even though they felt that there was little chance of getting rid of all the cancer. I had hoped that maybe there were new therapies - gene or stem-cell based that I might be able to join a trial of. No such luck; even if there were I would not qualify as they have not exhausted all conventional treatments on me yet so putting me in for trials would be unethical. They've left the door open for me to go back for more cutting and burning if I want it - don't think I do.
So I'm investing my hope with the quacks and mavericks. Who knows, maybe they're the ones who really know, maybe they're the ones who can help me beat this. Time will tell.
If I don't write any more here before Christmas let me wish you all a very happy holiday. Elaine and I haven't decided about Christmas cards yet so if none appear please accept this as our own greetings to you.
It must be four weeks since I finished the first of these treatments. That was the PDT treatment and I'm really suffering what I hope are the after effects.
For the past week or so I have an awful taste in my mouth. Sharp, sour, metallic and permanent. It only goes when I eat and that is only temporary relief. I have inflammation in my throat which is making it tricky to swallow and the left side of my neck feels hard and swollen. Hopefully these are the after effects of the PDT treatment and at least, if so, they show that the treatment has done something. Of course, there's always the worse possibility that a new tumour is growing in my neck and it is that which is causing the restriction and foul taste. For the first time since I found out about the cancer the ordinary process of getting through a day has become, literally, distasteful. Don't get me wrong, I'm still finding a lot to enjoy, life is still worth living and I'm finding plenty to do but living with this taste cannot be ignored.
The Winchester Maverick thought that the inflammation was likely to last until towards the end of December before it starts to fade out - I really hope he's right. He has a mysterious computer programme that looks like a graphic artists workshop but which he claims is a spin-off from the Russian Space Programme. It shows every organ in the body and is accompanied by musical scales. I have wear headphones and face a detector whilst the tones are played in my ears. Apparently the tones stimulate a magnetic response in the body's organs and by measuring the magnetic fields an indication may be gained as to the health and function of each organ. Apparently the WM can see that by body is now dealing with dead cancer cells. This doesn't mean that all the cancer cells are dead but he is satisfied that it's a good start.
In the meantime I've had to change my diet and start popping pills and dietary supplements like nobody's business. I'll be on about 10 or 15 things every day before long. Some of these are meant to make life difficult for the cancer, others are meant to boost my immune system or support my body's organic processes. It's impossible to know whether anything is working so it's a question of try anything while I can. One result of this philosophy may be a 'holiday' to Germany in the New Year for a newish treatment - dendritic cell vaccine. This is a vaccination that is specifically designed to match my cancer. It is an immune system booster and so programmes blood cells to recognise and attack my cancer cells. Again, there is no guarantee that it will work but if it stands a chance I'll try it. I've only ever spent one day in Germany and would likely have to stay for a week so we thought we might as well make a holiday of it and do a bit of exploring. The clinic is in a small German town called Gottingen. This is in Saxony between Hannover and Leipzig, so if anybody has any suggestions as to things we could do or see whilst in the area let us know.
After that it will be back to England and then three sets of follow up vaccinations at the Winchester clinic. The big problem with my cancer is that it is so hidden. No-one can tell whether it's gone or not, whether it will reoccur or not. The only way to know whether it's there is to wait and see.
Rather than do that I will probably look at the mistletoe treatment at the clinic near Bewdley. So I still have a long way to go and many options open but no guarantee that anything will work to save me. I will be very much happier if I can feel the swelling in my throat getting less and the taste going. At the moment the taste, if anything, is getting worse although the swelling has checked. Still, I'm trying hard to whack the cancer while I can. Although the docs of the NHS seem to feel that little but conventional treatments will work, there are others out there holding out far more hope and making a lot of money out of offering help. We'll have to see. Not everybody survives but I'm not going to get to that stage without a fight.
Last Wednesday we had an appointment at the Royal Marsden Cancer Hospital in London. We drove down on Tuesday and treated ourselves to a night in an Earl's Court hotel. It was surprisingly comfortable. A lovely building, nicely appointed public rooms and very quiet. Our room was certainly compact - although the en-suite was a good size - but it was tastefully decorated and spotlessly clean. It was within walking distance of the hospital which made getting there much easier than if we had stayed in Brentford. The doctor's we met were lovely, helpful and wanted to do everything they could to help. Unfortunately all the had to offer was more cutting, burning or poisoning. They gave us the impression that their conventional therapies were the safest way to go even though they felt that there was little chance of getting rid of all the cancer. I had hoped that maybe there were new therapies - gene or stem-cell based that I might be able to join a trial of. No such luck; even if there were I would not qualify as they have not exhausted all conventional treatments on me yet so putting me in for trials would be unethical. They've left the door open for me to go back for more cutting and burning if I want it - don't think I do.
So I'm investing my hope with the quacks and mavericks. Who knows, maybe they're the ones who really know, maybe they're the ones who can help me beat this. Time will tell.
If I don't write any more here before Christmas let me wish you all a very happy holiday. Elaine and I haven't decided about Christmas cards yet so if none appear please accept this as our own greetings to you.
MERRY CHRISTMAS
with love
RON & ELAINE
with love
RON & ELAINE
Friday 31 October 2008
Do It Yourself
Hello, hello, hello, hello, hello - as the copper said to the man with five heads. I bet you've been waiting for this update with anxiety, impatience and foreboding. Well allow me to put your hearts at rest - I am still alive and kicking!
The last entry was pretty black and must have sounded quite hopeless. It was written at a time when Elaine and I were at a particularly low ebb and when we'd just been given some seriously bad news. I find it inspiring to discover that so many of you have asked and encouraged me to continue with this blog. So be glad that today's entry will hit a happier and more determined note.
We weren't about to take it lying down, so pretty soon after 'Black Friday' Elaine and I got onto the Internet to try and find out what was out there. The first stop was to buy me a voice amplifier. This is a gadget that looks rather like a 1970's transistor radio. It has a suitably discreet throat microphone that sits to one side of the larynx on a band round the neck and a main unit that will fit into a reasonable pocket. Suddenly I can engage in group conversations again or go out for a meal with friends without just having to sit and listen all evening. It does take the unexpecting (shop assistants, waitresses etc) by surprise when they hear this metallic, amplified voice issuing from my chest or waist but so far no-one has been curious or confident enough to ask about it. Eating out can cause some amusement as the unit amplifies everything, voice, burps, swallows and drinking sounds. Fellow diners in a restaurant look round in astonishment trying to locate the source of these unusual sounds. However, that is a small price to pay for the convenience it brings me. Maybe, some time in the future, speech therapy or Teflon surgery will render it unnecessary but I could be dead by then!
Following this purchase we went on to look at treatment options. To kick off I went for the DNA micro-array tests in Bristol. On a wet and miserable day Elaine and I took a gentle drive down the M5 and found the road to Clifton Downs without trouble. After a short stroll around we found the clinic housed in a very impressive Georgian mansion on a most impressive road facing a park beyond which was the suspension bridge itself. Much to my surprise there were dozens of doctors all operating out of the same building. The place was a warren of independent practitioners all collected together under the same roof. Whether there was any common thread or philosophy running through the different practises was impossible for me to know. The waiting room was really impressive, rather like a lounge in an expensive country house hotel. There was a open log fire, antique furniture, a huge window at least 10 feet tall and lots of glossy, expensive end magazines. We had only a short wait before someone came to collect us. Turning a corner from the public areas showed another face of the practice. We were led along a narrow, hospital cream painted corridor in need of some personal touches to a slimline lift that had difficulty accommodating three. Then, instead of going up we descended into the bowels of the building. Exiting the lift we followed along subterranean corridors stacked high with boxes of medical gear, lined by electronic equipment linked to the rest of the building by thick, heavy cables. There were overstuffed filing cabinets and supplies of all sorts taking up half the floor space. Eventually we arrived at our doctor's domain. Her secretary's desk was stuck in the corridor, her nurse's room had no outdoor light and was already occupied by two patients having various liquids dripped into their bodies, her waiting area was four chairs stuck in the corridor. The doctor had her own consulting room but as the door was shut all the time we were there I have no idea what it was like.
The nurse came and drew blood, there was a questionnaire to complete, an invoice to pass over and that was it for the day. The results were promised in seven to ten days, provided I had paid my bill.
The following day we had an appointment with the NHS oncologist in Cheltenham. Rather than do too much running around we went straight there from Bristol and B&B'ed overnight. The Cheltenham Dalek is in fact a good bloke. You can see that he wants to do his best and is involved and concerned for each of his patients. He gave the impression that he agreed with our decision to reject surgery and went on to tell us about the palliative chemo-therapy. He explained that the drug (for drug read poison) that he would try me on first would kill some, but not all, of the cancer cells as some of the cells would be drug resistant. These would then multiply to become the majority which would then require the need of a stronger poison which again would not kill all the cells and so it would go on. There was more talk of scans and side effects but eventually we were encouraged to look at the other, alternative treatments before using chemo as the chemo knocks out the immune system and the aim of many alternative therapies is to stimulate the immune system into attacking the cancer cells. So, for the time being at least, we have rejected chemo too.
Next in line was a visit to Hampshire to see a maverick doctor who works out on the fringe and about as far away from conventional medicine as possible. He is Mr Draculamp II. Mr Draculamp II does not use lasers or potions that turn you into a vampire. Instead he uses green drops that stain your tongue for two days and mean you must not go sunbathing until the end of the week. When the end of the week comes you have to have blood taken (you'd expect that with a vampire now wouldn't you?). The blood is drawn by one of Mr Draculamp's helpers who are dressed up to look exactly like real nurses. The blood is then mixed with another magic potion that looks just like water but it turns the blood bright pinky-red. The 'nurses' say it's called ozone but it isn't really 'cause we all know ozone's a gas don't we? Now, very generously for vampires, the stick the blood back in through exactly the same hole they took it out of. After a ten minute rest to allow the pink blood to circulate I had to lie on a plastic bed surrounded by ten thousand little LEDs (light emitting dwarfs) that all glow red because of the tremendous exertion they have to go to just to keep warm. It just so happens that they glow at the exact frequency needed for the green drops and the pink blood to react and release oxygen; and we all know oxygen is poisonous to cancer, don't we? After six days of treatment on either side of the weekend I was sent home with a warning that things would carry on working and the cancer would become inflammed and die off. My neck and mouth would become more swollen and probably painful. That was two days ago. It's just possible that my neck and cheek are more swollen today, but it's marginal. Fortunately there's no pain.
Between visiting the Hampshire Maverick for an initial consultation and going back for a week of treatment we pursued another, more local, option. Trimpley is between Bewdley and Bridgenorth and is the location of the only clinic in the country that practises the anthroposophic medical practises first developed by Rudolph Steiner and now quite commonly used in Switzerland, Germany and Austria. The aim of their treatment is to kick start the immune system and strengthen it so that it can attack and hopefully contain if not destroy the cancer (again no promises). In order to achieve this end they use a drug derived from mistletoe. The initial treatment is to give intravenous infusions of mistletoe which in turn provoke a fever. The fever is a sign that the immune system is working overtime. Their aim is to invoke four fever episodes in a fortnight. Fortunately, as the body becomes used to this abuse the reaction becomes less traumatic. Cancer cells do not like extreme body temperatures and although the fever is not so extreme it does provoke enough change in some cancer cells for the immune system to recognise them as alien. Thereafter the immune system will continue to operate against the cancer. One down side of the treatment is that the injections have to continue for years if not for ever. Sub-cutaneous injections into the belly two or three times a week may not sound bad to those who have to check their blood sugar levels and dose themselves with insulin on a daily basis and I'm sure I'll get used to it .....
A few days ago I received the results of the Bristol blood tests. Although one needs a degree in medical jargon and another in statistics to be able to interpret and understand them, they appear to confirm that I do still have cancer in my system. Next week we have to go down to Bristol to meet the doctor and get a clearer idea of what they show and what they suggest should happen next. A couple of weeks after that we go back to Hampshire for more blood tests and some idea of whether the maverick Dr Draculamp's treatment has done any good. Then it may be close to Xmas and then maybe I'll sample the delights of mistletoe. And if none of this works .... well there are plenty more odd treatments out there to consider.
It's just one week now until my 60th birthday. It feels like far more of an achievement now than it did when I handed in my resignation 18 months ago. I know some of you thought my birthday was in the summer when I was going to have my party - you were misled. I'd decided to have the party early when we could still use the garden. On top of that I was hoping to be in America until Nov 4th on our house exchange, so coming back jet-lagged, to a party was a non-starter. The house exchange only half-worked. We stayed here but our exchange partners, Amy and Tom, came over. They have stayed with us, used the house while we were down in Hampshire and visited other friends of theirs. It's been great to meet them and exchange experiences. We're still hoping to be able to take a trip to America before it's too late.
OK, that's about it for now. Thanks to all of you for your interest, support and encouragement. We're still open to visitors if you can make it some time and it will be good to see you if you can.
Ron.
The last entry was pretty black and must have sounded quite hopeless. It was written at a time when Elaine and I were at a particularly low ebb and when we'd just been given some seriously bad news. I find it inspiring to discover that so many of you have asked and encouraged me to continue with this blog. So be glad that today's entry will hit a happier and more determined note.
We weren't about to take it lying down, so pretty soon after 'Black Friday' Elaine and I got onto the Internet to try and find out what was out there. The first stop was to buy me a voice amplifier. This is a gadget that looks rather like a 1970's transistor radio. It has a suitably discreet throat microphone that sits to one side of the larynx on a band round the neck and a main unit that will fit into a reasonable pocket. Suddenly I can engage in group conversations again or go out for a meal with friends without just having to sit and listen all evening. It does take the unexpecting (shop assistants, waitresses etc) by surprise when they hear this metallic, amplified voice issuing from my chest or waist but so far no-one has been curious or confident enough to ask about it. Eating out can cause some amusement as the unit amplifies everything, voice, burps, swallows and drinking sounds. Fellow diners in a restaurant look round in astonishment trying to locate the source of these unusual sounds. However, that is a small price to pay for the convenience it brings me. Maybe, some time in the future, speech therapy or Teflon surgery will render it unnecessary but I could be dead by then!
Following this purchase we went on to look at treatment options. To kick off I went for the DNA micro-array tests in Bristol. On a wet and miserable day Elaine and I took a gentle drive down the M5 and found the road to Clifton Downs without trouble. After a short stroll around we found the clinic housed in a very impressive Georgian mansion on a most impressive road facing a park beyond which was the suspension bridge itself. Much to my surprise there were dozens of doctors all operating out of the same building. The place was a warren of independent practitioners all collected together under the same roof. Whether there was any common thread or philosophy running through the different practises was impossible for me to know. The waiting room was really impressive, rather like a lounge in an expensive country house hotel. There was a open log fire, antique furniture, a huge window at least 10 feet tall and lots of glossy, expensive end magazines. We had only a short wait before someone came to collect us. Turning a corner from the public areas showed another face of the practice. We were led along a narrow, hospital cream painted corridor in need of some personal touches to a slimline lift that had difficulty accommodating three. Then, instead of going up we descended into the bowels of the building. Exiting the lift we followed along subterranean corridors stacked high with boxes of medical gear, lined by electronic equipment linked to the rest of the building by thick, heavy cables. There were overstuffed filing cabinets and supplies of all sorts taking up half the floor space. Eventually we arrived at our doctor's domain. Her secretary's desk was stuck in the corridor, her nurse's room had no outdoor light and was already occupied by two patients having various liquids dripped into their bodies, her waiting area was four chairs stuck in the corridor. The doctor had her own consulting room but as the door was shut all the time we were there I have no idea what it was like.
The nurse came and drew blood, there was a questionnaire to complete, an invoice to pass over and that was it for the day. The results were promised in seven to ten days, provided I had paid my bill.
The following day we had an appointment with the NHS oncologist in Cheltenham. Rather than do too much running around we went straight there from Bristol and B&B'ed overnight. The Cheltenham Dalek is in fact a good bloke. You can see that he wants to do his best and is involved and concerned for each of his patients. He gave the impression that he agreed with our decision to reject surgery and went on to tell us about the palliative chemo-therapy. He explained that the drug (for drug read poison) that he would try me on first would kill some, but not all, of the cancer cells as some of the cells would be drug resistant. These would then multiply to become the majority which would then require the need of a stronger poison which again would not kill all the cells and so it would go on. There was more talk of scans and side effects but eventually we were encouraged to look at the other, alternative treatments before using chemo as the chemo knocks out the immune system and the aim of many alternative therapies is to stimulate the immune system into attacking the cancer cells. So, for the time being at least, we have rejected chemo too.
Next in line was a visit to Hampshire to see a maverick doctor who works out on the fringe and about as far away from conventional medicine as possible. He is Mr Draculamp II. Mr Draculamp II does not use lasers or potions that turn you into a vampire. Instead he uses green drops that stain your tongue for two days and mean you must not go sunbathing until the end of the week. When the end of the week comes you have to have blood taken (you'd expect that with a vampire now wouldn't you?). The blood is drawn by one of Mr Draculamp's helpers who are dressed up to look exactly like real nurses. The blood is then mixed with another magic potion that looks just like water but it turns the blood bright pinky-red. The 'nurses' say it's called ozone but it isn't really 'cause we all know ozone's a gas don't we? Now, very generously for vampires, the stick the blood back in through exactly the same hole they took it out of. After a ten minute rest to allow the pink blood to circulate I had to lie on a plastic bed surrounded by ten thousand little LEDs (light emitting dwarfs) that all glow red because of the tremendous exertion they have to go to just to keep warm. It just so happens that they glow at the exact frequency needed for the green drops and the pink blood to react and release oxygen; and we all know oxygen is poisonous to cancer, don't we? After six days of treatment on either side of the weekend I was sent home with a warning that things would carry on working and the cancer would become inflammed and die off. My neck and mouth would become more swollen and probably painful. That was two days ago. It's just possible that my neck and cheek are more swollen today, but it's marginal. Fortunately there's no pain.
Between visiting the Hampshire Maverick for an initial consultation and going back for a week of treatment we pursued another, more local, option. Trimpley is between Bewdley and Bridgenorth and is the location of the only clinic in the country that practises the anthroposophic medical practises first developed by Rudolph Steiner and now quite commonly used in Switzerland, Germany and Austria. The aim of their treatment is to kick start the immune system and strengthen it so that it can attack and hopefully contain if not destroy the cancer (again no promises). In order to achieve this end they use a drug derived from mistletoe. The initial treatment is to give intravenous infusions of mistletoe which in turn provoke a fever. The fever is a sign that the immune system is working overtime. Their aim is to invoke four fever episodes in a fortnight. Fortunately, as the body becomes used to this abuse the reaction becomes less traumatic. Cancer cells do not like extreme body temperatures and although the fever is not so extreme it does provoke enough change in some cancer cells for the immune system to recognise them as alien. Thereafter the immune system will continue to operate against the cancer. One down side of the treatment is that the injections have to continue for years if not for ever. Sub-cutaneous injections into the belly two or three times a week may not sound bad to those who have to check their blood sugar levels and dose themselves with insulin on a daily basis and I'm sure I'll get used to it .....
A few days ago I received the results of the Bristol blood tests. Although one needs a degree in medical jargon and another in statistics to be able to interpret and understand them, they appear to confirm that I do still have cancer in my system. Next week we have to go down to Bristol to meet the doctor and get a clearer idea of what they show and what they suggest should happen next. A couple of weeks after that we go back to Hampshire for more blood tests and some idea of whether the maverick Dr Draculamp's treatment has done any good. Then it may be close to Xmas and then maybe I'll sample the delights of mistletoe. And if none of this works .... well there are plenty more odd treatments out there to consider.
It's just one week now until my 60th birthday. It feels like far more of an achievement now than it did when I handed in my resignation 18 months ago. I know some of you thought my birthday was in the summer when I was going to have my party - you were misled. I'd decided to have the party early when we could still use the garden. On top of that I was hoping to be in America until Nov 4th on our house exchange, so coming back jet-lagged, to a party was a non-starter. The house exchange only half-worked. We stayed here but our exchange partners, Amy and Tom, came over. They have stayed with us, used the house while we were down in Hampshire and visited other friends of theirs. It's been great to meet them and exchange experiences. We're still hoping to be able to take a trip to America before it's too late.
OK, that's about it for now. Thanks to all of you for your interest, support and encouragement. We're still open to visitors if you can make it some time and it will be good to see you if you can.
Ron.
Friday 26 September 2008
The Gods are Laughing
"When we talk of tomorrow the Gods laugh".
I had the pathology results from my operation on Tuesday. They could hardly have been worse. There was a cancer. It was not a thyroid cancer but a secondary tumour from the cancer I had last year. As such it cannot be treated by radio-active iodine and I've had all the radio-therapy my body can take. The pathology examination indicated that the surgeon was not able to remove all the cancer and had to leave some behind rather than cut a hole in my throat. The only further treatment is more radical surgery to my throat larynx and pharynx. I was referred on to the Q.E. hospital in Birmingham where such surgery would be done. Elaine and I went up on Friday morning. We had a full description of the surgery as well as further information about the likelihood of success. The surgeon was not encouraging. One is left with an artificial larynx which can only be used when you are not breathing. You breathe through a hole in the neck rather than through mouth or nose and it is only possible to eat a soft diet. As this is a secondary cancer the chance of successfully removing all the cancer drops to less than 25%. On top of that it seems that the majority of people who actually have this surgery regret it eventually.
We were sent away to think about it but so far it hasn’t needed very much thinking about. We both agree that it doesn’t sound worth it. Perhaps if there was some guarantee of success it might be worth contemplating but with so little likelihood of a recovery why would I want to be so incapacitated?
So what comes next? There is a chance of some palliative chemo-therapy which should slow down the development of the cancer and give me a bit more time (is it too much to hope that some new cure might come along in the meantime?). Other than that it’s on to alternative therapies and quacks. There is a doctor in Bristol who can do a DNA array blood test to see what type of cancer is present. The blood can also be tested to see how the cancer reacts to various chemo-therapy agents. I’m told there is no chemo-therapy agent that will touch head and neck cancer so this may be a wild goose chase. It’s also possible that if something does appear to work it may not be available on the NHS – where have you heard that before?
I’m told I could have anything between 9 months and 4 years but that everyone and every cancer is different. We’ll see, but 4 years is definitely optimistic. For the first time since this all began I've felt depressed and morose. I had felt confident that my treatment would be effective and that I'd be able to look forward to a recovery. The discovery that this isn't the case has been a bit of a body blow. I've tried to keep busy and occupied but keeping thoughts of mortality out of my mind is hard. I know that some folks with awful illnesses that lead to a long terminal decline must go through this for years and years so I hope that when I've got more familiar with my situation I'll be able to do what everybody recommends - live each day to the full, enjoy as much as possible, plan something for every day and so on. Yesterday we went to see the Miracle Theatre Company at the No 8 Arts Centre in Pershore. They were performing 'Taming of the Shrew' under the Shindig flag. It was amazing. It was a mixture of original and modern interpretation. The set was a simple collection of stacked blocks which were in turn a university, a town house, a mountain top, a gym, a tailors shop, an urban park and so on. There were only five performers and so the editing of the script and characters was quite liberal but as entertainment it was great, apart from those times when my mind went back to thoughts of my own mortality. Unfortunately I don't think they are doing any other local performances but should you get the chance do go and see them.
Both Elaine and I are so grateful for your expressions of hope, support and love and want to thank you all for everything you have all said and done so far. It’s meant a huge amount to us. I hope that at some point I may have some better news for you – but don’t count on it.
It seems to me that the NHS have almost counted me out for now. I have no future appointments arranged and we are having to contact the hospital to tell them what we want. However there are alternative treatments out there and some sound hopeful if not for a cure then at least for controlling the cancer and extending life. The trouble is that some are made to sound so effective and cheap (intravenous vitamin C for example) one wonders why anybody is dieing from cancer at all. We'll be investigating some of these therapies and hopefully benefiting from the appropriate ones.
I don’t know whether to continue this blog – nobody wants a continuing series of depressingly bad news. But then, if there is good news to report, that could be worth a posting. It was only two days ago that we saw the surgeon and got the bad news. I hope I’ll feel happier and more settled in a few days. In the meantime, if you phone, expect to hear someone who sounds very little like I used to. I have asked for speech therapy but nothing has been arranged yet. We're also hoping for some couselling and an appointment with the Dalek to discuss palliative care (he's also in charge of poisoning) so there are some ways to go.
We'll that's the latest news. I regret it's not better - but I'm not gone yet!
I had the pathology results from my operation on Tuesday. They could hardly have been worse. There was a cancer. It was not a thyroid cancer but a secondary tumour from the cancer I had last year. As such it cannot be treated by radio-active iodine and I've had all the radio-therapy my body can take. The pathology examination indicated that the surgeon was not able to remove all the cancer and had to leave some behind rather than cut a hole in my throat. The only further treatment is more radical surgery to my throat larynx and pharynx. I was referred on to the Q.E. hospital in Birmingham where such surgery would be done. Elaine and I went up on Friday morning. We had a full description of the surgery as well as further information about the likelihood of success. The surgeon was not encouraging. One is left with an artificial larynx which can only be used when you are not breathing. You breathe through a hole in the neck rather than through mouth or nose and it is only possible to eat a soft diet. As this is a secondary cancer the chance of successfully removing all the cancer drops to less than 25%. On top of that it seems that the majority of people who actually have this surgery regret it eventually.
We were sent away to think about it but so far it hasn’t needed very much thinking about. We both agree that it doesn’t sound worth it. Perhaps if there was some guarantee of success it might be worth contemplating but with so little likelihood of a recovery why would I want to be so incapacitated?
So what comes next? There is a chance of some palliative chemo-therapy which should slow down the development of the cancer and give me a bit more time (is it too much to hope that some new cure might come along in the meantime?). Other than that it’s on to alternative therapies and quacks. There is a doctor in Bristol who can do a DNA array blood test to see what type of cancer is present. The blood can also be tested to see how the cancer reacts to various chemo-therapy agents. I’m told there is no chemo-therapy agent that will touch head and neck cancer so this may be a wild goose chase. It’s also possible that if something does appear to work it may not be available on the NHS – where have you heard that before?
I’m told I could have anything between 9 months and 4 years but that everyone and every cancer is different. We’ll see, but 4 years is definitely optimistic. For the first time since this all began I've felt depressed and morose. I had felt confident that my treatment would be effective and that I'd be able to look forward to a recovery. The discovery that this isn't the case has been a bit of a body blow. I've tried to keep busy and occupied but keeping thoughts of mortality out of my mind is hard. I know that some folks with awful illnesses that lead to a long terminal decline must go through this for years and years so I hope that when I've got more familiar with my situation I'll be able to do what everybody recommends - live each day to the full, enjoy as much as possible, plan something for every day and so on. Yesterday we went to see the Miracle Theatre Company at the No 8 Arts Centre in Pershore. They were performing 'Taming of the Shrew' under the Shindig flag. It was amazing. It was a mixture of original and modern interpretation. The set was a simple collection of stacked blocks which were in turn a university, a town house, a mountain top, a gym, a tailors shop, an urban park and so on. There were only five performers and so the editing of the script and characters was quite liberal but as entertainment it was great, apart from those times when my mind went back to thoughts of my own mortality. Unfortunately I don't think they are doing any other local performances but should you get the chance do go and see them.
Both Elaine and I are so grateful for your expressions of hope, support and love and want to thank you all for everything you have all said and done so far. It’s meant a huge amount to us. I hope that at some point I may have some better news for you – but don’t count on it.
It seems to me that the NHS have almost counted me out for now. I have no future appointments arranged and we are having to contact the hospital to tell them what we want. However there are alternative treatments out there and some sound hopeful if not for a cure then at least for controlling the cancer and extending life. The trouble is that some are made to sound so effective and cheap (intravenous vitamin C for example) one wonders why anybody is dieing from cancer at all. We'll be investigating some of these therapies and hopefully benefiting from the appropriate ones.
I don’t know whether to continue this blog – nobody wants a continuing series of depressingly bad news. But then, if there is good news to report, that could be worth a posting. It was only two days ago that we saw the surgeon and got the bad news. I hope I’ll feel happier and more settled in a few days. In the meantime, if you phone, expect to hear someone who sounds very little like I used to. I have asked for speech therapy but nothing has been arranged yet. We're also hoping for some couselling and an appointment with the Dalek to discuss palliative care (he's also in charge of poisoning) so there are some ways to go.
We'll that's the latest news. I regret it's not better - but I'm not gone yet!
Thursday 18 September 2008
Back Home
I have to start by saying heartfelt thanks to all of you that have sent emails, phoned, posted cards, visited me at home or in hospital or responded over the vle. Your support, prayers, best wishes and thoughts have been a tremendous boost and great encouragement. I'm not ready to give up although there have been some black moments over the last couple of months. It is deeply moving to know that so many friends, relations, colleagues and acquaintances are rooting for me - if only the power of thought alone were a cure!
So - what's the news?
Well, as you know I went in to hospital for the second lot of surgery last week. Friday morning at 9.00am saw me in the operating theatre having my thyroid gland removed. As far as I can tell this took about 4 hours and I was out again and in recovery by 2.00pm when the ENT surgeon came to see me. He told me they had removed all my thyroid and several parathyroid glands. He felt they had managed to removed all the tumorous tissue but it seems to have been a close run thing - 'sticky' as another surgeon described it. I'm not sure what this means but a third surgeon told me that the tumour was towards the back of the thyroid. I suspect that it may have come close to attaching to my throat or gullet but they were able to separate it. This could mean that traces of the growth have been left behind but the pathology results are not yet available. If they show anything suspicious I will have to go and spend a few days in the oncology centre in Cheltenham being treated with radio-active iodine. This is designed to seek out any remaining thyroid cells and destroy them together with any cancer they carry. Apparently the prognosis for thyroid cancer is pretty good and there is a high rate of dealing with it successfully. The Head and Neck surgeon who was in attendance told me that there were no signs of secondary growths from my tumour of last year. The only cancer they found was within the thyroid and visual inspection appeared to confirm what the PET scan suggested, last year's cancer has not regrown anywhere. As treatment for that ended in November they would expect to see evidence of re-growth by now.
So for now I'm left with no thyroid and one, bruised parathyroid gland. The glands all have different roles in controlling the levels of hormones and calcium in the bloodstream and consequently I will now have to live on a diet of pills for the rest of my life. Still I know that many people regularly take similar medication so I'll not be alone. Unfortunately the surgery showed that the nerve that drives my left vocal chord has been damaged beyond recovery. This chord will not work again and as a result my voice is still weak. Part of the surgery involved shoving a tube down my throat to prevent any risk of my throat collapsing and blocking my airway. Throats don't take too kindly to this kind of abuse so, at the moment, my voice is even weaker than it was. It is working though and there are several grounds to hope that it will improve. These range from self-healing where the right vocal chord tends to stretch over towards the left and consequently close the gap between them, to voice therapy, to a form of surgery whereby the palsied chord is injected with Teflon to make it stiffer and larger thus vibrating more easily and also closing the space. I've also done a little research on the internet and discovered that there are all sorts of voice amplifiers that sit in a shirt pocket and use a throat microphone to enable (almost) normal communication - so that'll be all right then. Of all the things that have happened the thought that I'd be left with no voice, unable to communicate and take part in normal conversation was the most distressing.
Back to last Friday. By about 3.00pm one of the nurses on the critical care ward (more of this later) had phoned Elaine and told her it was OK to come in and see me. Naturally she was concerned to hear that I was in critical care and came straight away only to find me sitting up, talking (well whispering really), waving, eating lunch and generally looking about a thousand times better that she expected. I was in the critical care ward because there were no other beds available. I was well looked after but spent a disturbed night as there was another gentleman on the ward who was moaning and groaning and calling out all night. They gave me a reading lamp and some ear-plugs and I read myself to sleep and resumed reading when I awoke. I survived the night and was eventually returned to the Head and Neck ward on Saturday afternoon. By Sunday I was ready to go home but I still had a drain in place and several cannulas in my hand. Another day in hospital. On Monday they decided that my blood levels showed a calcium deficiency. More drips, pills and tablets. No change. Another drip. Still no improvement. More blood tests on Tuesday morning. Calcium levels had dropped. Was I getting pins and needles? I didn't think so but the chairs were so high that I wasn't sure whether I was getting a tingling in my legs or not. Certainly my lip felt strange but surely it had been like that before the surgery - I'd put it down to my nerves recovering from last year's surgery; just what they'd told me would happen. It's really funny being asked how something feels - trying to be precise about how a feeling has changed is almost impossible as how can you quantify a physical sensation and then compare it to one of a day or two ago? Still the calcium levels had dropped and it was clearly a concern for them, they didn't want to discharge me. Instead I had to have a giant drip that would take ten hours or more. So that took all of Tuesday right up to 1.00am Wednesday morning. After breakfast on Wednesday morning the vampire came again to draw blood. The results showed that my level had gone up from 1.72 (worry threshold 1.80) to about 2.35 (comfort threshold over 2.00). I was free to go. After days that had been so boring that I couldn't even motivate myself to read a good book, I felt like a rabbit with the runs - I couldn't get out of there fast enough. I had to wait a while for E. to arrive with the Honda chariot and carry me away. But not for long. I have to go back tomorrow for a follow up blood test and to have my stitches removed and then again next Tuesday to meet the butcher and see what the path. results show us. As I said before, I have a strong suspicion that they'll want me in again for a few days of boring, radio-active isolation.
And then we'll see!
So, once again thanks to you all for your thoughts, hopes and support. As I've heard so many times before, you don't really appreciate your good health until you loose it. I feel as though I've stepped over a huge rock to arrive where I am now and I'm desperately searching for a way back to the healthy side. I asked one of the surgeons whether I could be cautiously optimistic now the thyroid was out. He thought about it for a while and then said that I could certainly be less pessimistic. I suppose that will have to do for now.
Love to you all,
Ron
So - what's the news?
Well, as you know I went in to hospital for the second lot of surgery last week. Friday morning at 9.00am saw me in the operating theatre having my thyroid gland removed. As far as I can tell this took about 4 hours and I was out again and in recovery by 2.00pm when the ENT surgeon came to see me. He told me they had removed all my thyroid and several parathyroid glands. He felt they had managed to removed all the tumorous tissue but it seems to have been a close run thing - 'sticky' as another surgeon described it. I'm not sure what this means but a third surgeon told me that the tumour was towards the back of the thyroid. I suspect that it may have come close to attaching to my throat or gullet but they were able to separate it. This could mean that traces of the growth have been left behind but the pathology results are not yet available. If they show anything suspicious I will have to go and spend a few days in the oncology centre in Cheltenham being treated with radio-active iodine. This is designed to seek out any remaining thyroid cells and destroy them together with any cancer they carry. Apparently the prognosis for thyroid cancer is pretty good and there is a high rate of dealing with it successfully. The Head and Neck surgeon who was in attendance told me that there were no signs of secondary growths from my tumour of last year. The only cancer they found was within the thyroid and visual inspection appeared to confirm what the PET scan suggested, last year's cancer has not regrown anywhere. As treatment for that ended in November they would expect to see evidence of re-growth by now.
So for now I'm left with no thyroid and one, bruised parathyroid gland. The glands all have different roles in controlling the levels of hormones and calcium in the bloodstream and consequently I will now have to live on a diet of pills for the rest of my life. Still I know that many people regularly take similar medication so I'll not be alone. Unfortunately the surgery showed that the nerve that drives my left vocal chord has been damaged beyond recovery. This chord will not work again and as a result my voice is still weak. Part of the surgery involved shoving a tube down my throat to prevent any risk of my throat collapsing and blocking my airway. Throats don't take too kindly to this kind of abuse so, at the moment, my voice is even weaker than it was. It is working though and there are several grounds to hope that it will improve. These range from self-healing where the right vocal chord tends to stretch over towards the left and consequently close the gap between them, to voice therapy, to a form of surgery whereby the palsied chord is injected with Teflon to make it stiffer and larger thus vibrating more easily and also closing the space. I've also done a little research on the internet and discovered that there are all sorts of voice amplifiers that sit in a shirt pocket and use a throat microphone to enable (almost) normal communication - so that'll be all right then. Of all the things that have happened the thought that I'd be left with no voice, unable to communicate and take part in normal conversation was the most distressing.
Back to last Friday. By about 3.00pm one of the nurses on the critical care ward (more of this later) had phoned Elaine and told her it was OK to come in and see me. Naturally she was concerned to hear that I was in critical care and came straight away only to find me sitting up, talking (well whispering really), waving, eating lunch and generally looking about a thousand times better that she expected. I was in the critical care ward because there were no other beds available. I was well looked after but spent a disturbed night as there was another gentleman on the ward who was moaning and groaning and calling out all night. They gave me a reading lamp and some ear-plugs and I read myself to sleep and resumed reading when I awoke. I survived the night and was eventually returned to the Head and Neck ward on Saturday afternoon. By Sunday I was ready to go home but I still had a drain in place and several cannulas in my hand. Another day in hospital. On Monday they decided that my blood levels showed a calcium deficiency. More drips, pills and tablets. No change. Another drip. Still no improvement. More blood tests on Tuesday morning. Calcium levels had dropped. Was I getting pins and needles? I didn't think so but the chairs were so high that I wasn't sure whether I was getting a tingling in my legs or not. Certainly my lip felt strange but surely it had been like that before the surgery - I'd put it down to my nerves recovering from last year's surgery; just what they'd told me would happen. It's really funny being asked how something feels - trying to be precise about how a feeling has changed is almost impossible as how can you quantify a physical sensation and then compare it to one of a day or two ago? Still the calcium levels had dropped and it was clearly a concern for them, they didn't want to discharge me. Instead I had to have a giant drip that would take ten hours or more. So that took all of Tuesday right up to 1.00am Wednesday morning. After breakfast on Wednesday morning the vampire came again to draw blood. The results showed that my level had gone up from 1.72 (worry threshold 1.80) to about 2.35 (comfort threshold over 2.00). I was free to go. After days that had been so boring that I couldn't even motivate myself to read a good book, I felt like a rabbit with the runs - I couldn't get out of there fast enough. I had to wait a while for E. to arrive with the Honda chariot and carry me away. But not for long. I have to go back tomorrow for a follow up blood test and to have my stitches removed and then again next Tuesday to meet the butcher and see what the path. results show us. As I said before, I have a strong suspicion that they'll want me in again for a few days of boring, radio-active isolation.
And then we'll see!
So, once again thanks to you all for your thoughts, hopes and support. As I've heard so many times before, you don't really appreciate your good health until you loose it. I feel as though I've stepped over a huge rock to arrive where I am now and I'm desperately searching for a way back to the healthy side. I asked one of the surgeons whether I could be cautiously optimistic now the thyroid was out. He thought about it for a while and then said that I could certainly be less pessimistic. I suppose that will have to do for now.
Love to you all,
Ron
Sunday 7 September 2008
Here We Go Again
It's Sunday, it's lunchtime and in 20 minutes or so we should be heading off to friends for lunch. Hardly the best time to start writing here. But I have to make a start of sorts as there's a lot to plough through and I can't put it off any more.
This blog was meant to be a thing of hope and optimism. The fact that there have been few recent entries is a reflection of how, after such a comfortable start, things have begun to get more oppressive and unpleasant. These are not feelings and attitudes I want to share with friends and family and so I've kept them, largely, to myself. However, I also feel compelled by some personal need to catalogue all the ups and downs and many of you are aware that I've got more surgery coming up and you've expressed a wish to be kept informed. Again I think it's the anaesthesia approach. The more familiar I am with what they are doing the less fearful I am. If I know the worst and feel I can cope with it then I have little to fear. Hence my new motto - "Prepare for the worst but hope for the best". So what comes next may seem to be depressing reading. If so I'm sorry. I'm not depressed, I'm keeping busy and enjoying as much as I can but I can see that I could be facing a bit of a struggle from now on - let's hope only in the shorter term.
I try to avoid thinking about what the worst really means. As a consequence I am now suffering the after effects of last summers trauma. I was told that my nerves would take about a year to recover physically (not emotionally). I'm beginning to discover what this means. The stiffness and tighness is now joined by tingling, aching, wincing moments of shooting pains, numbness and tenderness, toothache in absent teeth, a pull on my lip as though I've been caught on a fish hook and a swollen feel in my cheek which makes me think that I didn't just dream about Mike Tyson. If you've read the previous instalments you will know that up until early June everything seemed hunky dory. I felt as though I was making a good recovery, that the cancer had gone and that I would be left with a number of problems but nothing too serious. It looked as though I had beaten the beast and could get on with retirement. It was not to be so simple and I look at myself now as a bit naive and simple for thinking it would all be so easy.
You probably know that I have partly lost my voice. After three scans and two physical examinations the butchers have finally decided that this is due to a cancer in my thyroid gland. If so, this is likely to be a completely new cancer, unconnected with the one I had last year. There are a few points that support this diagnosis, the main one being that there are no other signs of cancer anywhere on the scan, another being that this is exactly what the scan shows. Had it been a secondary from the tumour I had last summer the docs would have expected to see a number of 'hot-spots' in different parts of my body. As it is, there is only one which the scan shows as being in my thyroid. In some ways this is a hopeful development; not as hopeful as there being no cancer at all but, I'm told, thyroid cancer is fairly easy to deal with a good chance of a successful outcome. If I had to have anything, this is one of the better cancers to have. The other side of this diagnosis is that eight months or so is about when the docs would expect to find signs of secondary cancers. It appears to have developed in the only place that wasn't blasted by the Dalek - the line down the front of my throat which was protected to prevent my spinal chord from being zapped. I also don't know whether a thyroid cancer would explain my voice loss. It has been interesting comparing the approach of the two consultants on my case. One is far more strongly guided by the technology, feeling that if the scan shows it in my thyroid then that's where it is with all the positives that that includes. The other is more intuitive and wonders whether the scan might be misleading. If he is right then his concerns are based on a more unpleasant scenario with more traumatic outcomes.
So this Friday I have to another op. This time they will remove my thyroid so the pathologists can examine it in detail. If they find a cancer inside, surrounded by healthy tissue they will feel they have removed it all. If there is any indication that it has broken out I then have to go and have a dose of radio-active iodine. This seeks out wayward thyroid cells, attaches to them and wipes them out. It also means that I remain radio-active for a few days or so and therefore have to be kept in isolation until I am safe to approach again! Thereafter I have a life of pills to look forward to but I'm beginning to discover that there is a nation of thyroxin takers out there, so I won't be alone.
A worse outcome will be if they find the 'hot-spot' is not a thyroid cancer after all but a secondary from last year's tumour. Good news will be that it's only in my throat and, apparently, nowhere else. Bad news is that removing it could be difficult and the consequences ... well I'm not going into that yet, we'll wait and see.
So, for the last three months I've been living life in slow motion. The response times within the NHS are ponderous to say the least. Wait two weeks for a scan, wait another two weeks for the result, wait another two weeks for another scan and another two weeks for the results of that ... as was pointed out to me, there has been a remarkable lack of urgency. In the meantime it looks very much as though our planned trip to Canada and California this October will have to be forfeit, I can't see that I'll have recovered from the surgery and the cancer sufficiently to take the risk - getting insurance is going to be prohibitively expensive. In some ways that is a bigger regret than having to undergo more surgery. It has also put life into a kind of suspention. It has been hard to plan or even to look forward knowing that behind this is a possibility of more hospitalisation, more surgery and more time spent dealing with the cancer than getting out and doing things.
So - I'm going to leave it there, if you got this far thanks for taking so much interest. By the time you read this my op may well be over and I may even be composing the next entry telling you what the docs found. I go in later on today, there's a bit of me that can't wait. If I've got this thing inside me I'll be only too pleased to get rid of it. By this time tomorrow it should all be over, with luck forever - fingers crossed!
This blog was meant to be a thing of hope and optimism. The fact that there have been few recent entries is a reflection of how, after such a comfortable start, things have begun to get more oppressive and unpleasant. These are not feelings and attitudes I want to share with friends and family and so I've kept them, largely, to myself. However, I also feel compelled by some personal need to catalogue all the ups and downs and many of you are aware that I've got more surgery coming up and you've expressed a wish to be kept informed. Again I think it's the anaesthesia approach. The more familiar I am with what they are doing the less fearful I am. If I know the worst and feel I can cope with it then I have little to fear. Hence my new motto - "Prepare for the worst but hope for the best". So what comes next may seem to be depressing reading. If so I'm sorry. I'm not depressed, I'm keeping busy and enjoying as much as I can but I can see that I could be facing a bit of a struggle from now on - let's hope only in the shorter term.
I try to avoid thinking about what the worst really means. As a consequence I am now suffering the after effects of last summers trauma. I was told that my nerves would take about a year to recover physically (not emotionally). I'm beginning to discover what this means. The stiffness and tighness is now joined by tingling, aching, wincing moments of shooting pains, numbness and tenderness, toothache in absent teeth, a pull on my lip as though I've been caught on a fish hook and a swollen feel in my cheek which makes me think that I didn't just dream about Mike Tyson. If you've read the previous instalments you will know that up until early June everything seemed hunky dory. I felt as though I was making a good recovery, that the cancer had gone and that I would be left with a number of problems but nothing too serious. It looked as though I had beaten the beast and could get on with retirement. It was not to be so simple and I look at myself now as a bit naive and simple for thinking it would all be so easy.
You probably know that I have partly lost my voice. After three scans and two physical examinations the butchers have finally decided that this is due to a cancer in my thyroid gland. If so, this is likely to be a completely new cancer, unconnected with the one I had last year. There are a few points that support this diagnosis, the main one being that there are no other signs of cancer anywhere on the scan, another being that this is exactly what the scan shows. Had it been a secondary from the tumour I had last summer the docs would have expected to see a number of 'hot-spots' in different parts of my body. As it is, there is only one which the scan shows as being in my thyroid. In some ways this is a hopeful development; not as hopeful as there being no cancer at all but, I'm told, thyroid cancer is fairly easy to deal with a good chance of a successful outcome. If I had to have anything, this is one of the better cancers to have. The other side of this diagnosis is that eight months or so is about when the docs would expect to find signs of secondary cancers. It appears to have developed in the only place that wasn't blasted by the Dalek - the line down the front of my throat which was protected to prevent my spinal chord from being zapped. I also don't know whether a thyroid cancer would explain my voice loss. It has been interesting comparing the approach of the two consultants on my case. One is far more strongly guided by the technology, feeling that if the scan shows it in my thyroid then that's where it is with all the positives that that includes. The other is more intuitive and wonders whether the scan might be misleading. If he is right then his concerns are based on a more unpleasant scenario with more traumatic outcomes.
So this Friday I have to another op. This time they will remove my thyroid so the pathologists can examine it in detail. If they find a cancer inside, surrounded by healthy tissue they will feel they have removed it all. If there is any indication that it has broken out I then have to go and have a dose of radio-active iodine. This seeks out wayward thyroid cells, attaches to them and wipes them out. It also means that I remain radio-active for a few days or so and therefore have to be kept in isolation until I am safe to approach again! Thereafter I have a life of pills to look forward to but I'm beginning to discover that there is a nation of thyroxin takers out there, so I won't be alone.
A worse outcome will be if they find the 'hot-spot' is not a thyroid cancer after all but a secondary from last year's tumour. Good news will be that it's only in my throat and, apparently, nowhere else. Bad news is that removing it could be difficult and the consequences ... well I'm not going into that yet, we'll wait and see.
So, for the last three months I've been living life in slow motion. The response times within the NHS are ponderous to say the least. Wait two weeks for a scan, wait another two weeks for the result, wait another two weeks for another scan and another two weeks for the results of that ... as was pointed out to me, there has been a remarkable lack of urgency. In the meantime it looks very much as though our planned trip to Canada and California this October will have to be forfeit, I can't see that I'll have recovered from the surgery and the cancer sufficiently to take the risk - getting insurance is going to be prohibitively expensive. In some ways that is a bigger regret than having to undergo more surgery. It has also put life into a kind of suspention. It has been hard to plan or even to look forward knowing that behind this is a possibility of more hospitalisation, more surgery and more time spent dealing with the cancer than getting out and doing things.
So - I'm going to leave it there, if you got this far thanks for taking so much interest. By the time you read this my op may well be over and I may even be composing the next entry telling you what the docs found. I go in later on today, there's a bit of me that can't wait. If I've got this thing inside me I'll be only too pleased to get rid of it. By this time tomorrow it should all be over, with luck forever - fingers crossed!
Thursday 14 August 2008
The Suspense is Killing Me!
It's exactly one year since I had my surgery and despite everything it's not been a bad year. I've had great support from friends and family. I've tried my hand at some new things with a modicum of success. We've travelled and enjoyed it, been to theatre and concerts and I have been reasonably fit and healthy. I felt I was on the mend and ready to look forward. We have even made plans; a trip to America and Canada in October and the possibility of renting a house in the Lake District on 2009.
When we talk of the future the Gods laugh!
In the last 2 months things have started to go wrong. Sadly my dad died at the start of June. Within days I'd lost my voice. At first it was thought to be only a strain as I had been talking a lot but when I couldn't find it I went back to the hospital. An examination showed nothing sinister but also nothing to explain the voice loss. So I was referred on. I had a CAT scan, it showed nothing; I had an MRI scan, it showed nothing; I was sent for a PET scan (they were throwing an entire menagerie at me) - the ultimate in scanning technology. When I went for the results on Tuesday I was told they had not seen the scan and nor had the radiologist so they could not tell me what the scan showed. However a written report said there is "some activity" in the region of my thyroid gland. They were not willing to guess, speculate, suggest or hypothesise exactly what that meant.
However I was told some of the possibles.
It could be a new tumour. If it's in my thyroid it's a new cancer unconnected with last year's. The gland could be removed by surgery and the area treated with radio-active iodine. I'd then have to live on a diet of drugs to make up for the missing thyroid gland.
It could be a remnant of last year's tumour that was not killed off by the radio-therapy. It could also be removed by surgery, a lesser operation than last year's but still not something to look forward to. However they couldn't follow it up with more radio-therapy as I've already had all my body can tolerate. I didn't ask whether more than one little cancer cell might have survived the radio-therapy - I'll deal with that scenario if I have to when the time comes.
Alternatively it could just be showing inflammation. To be sure there is swelling and stiffness in my neck, the after-effects of the therapy but the ENT consultant thought it was too long after the treatment for the effects to only just be showing.
Infection is unlikely; the one I had last summer is well over and I show no other signs. However, whatever it is, it is small. It was not even spotted on the first two scans. It was suggested that anything that small would be unlikely to explain my voice loss so there may be another cause and that might be the damage to the tissues in my neck.
So I have to sit and wait another 2 weeks before a diagnosis and then, if necessary, go on to treatment options. It's rather disappointing and a bit disheartening but I'll just get on with what I can for now and try to forget about it. I've certainly got plenty to do what with garden, kitchen, bathroom and exterior decorating. With luck it will all turn out to be a false alarm and we can get on with our trip to America in October. Without luck it could be a bit of a bummer.
Many of you have been invited to my party on Aug 30th. Just watch this space. If things go wrong I may have to cancel. My appointment is on Tuesday 26th so I hope I'll know something more then. If I have to cancel I'll try to email you and I'll post a notice here. I hope it won't be necessary.
When we talk of the future the Gods laugh!
In the last 2 months things have started to go wrong. Sadly my dad died at the start of June. Within days I'd lost my voice. At first it was thought to be only a strain as I had been talking a lot but when I couldn't find it I went back to the hospital. An examination showed nothing sinister but also nothing to explain the voice loss. So I was referred on. I had a CAT scan, it showed nothing; I had an MRI scan, it showed nothing; I was sent for a PET scan (they were throwing an entire menagerie at me) - the ultimate in scanning technology. When I went for the results on Tuesday I was told they had not seen the scan and nor had the radiologist so they could not tell me what the scan showed. However a written report said there is "some activity" in the region of my thyroid gland. They were not willing to guess, speculate, suggest or hypothesise exactly what that meant.
However I was told some of the possibles.
It could be a new tumour. If it's in my thyroid it's a new cancer unconnected with last year's. The gland could be removed by surgery and the area treated with radio-active iodine. I'd then have to live on a diet of drugs to make up for the missing thyroid gland.
It could be a remnant of last year's tumour that was not killed off by the radio-therapy. It could also be removed by surgery, a lesser operation than last year's but still not something to look forward to. However they couldn't follow it up with more radio-therapy as I've already had all my body can tolerate. I didn't ask whether more than one little cancer cell might have survived the radio-therapy - I'll deal with that scenario if I have to when the time comes.
Alternatively it could just be showing inflammation. To be sure there is swelling and stiffness in my neck, the after-effects of the therapy but the ENT consultant thought it was too long after the treatment for the effects to only just be showing.
Infection is unlikely; the one I had last summer is well over and I show no other signs. However, whatever it is, it is small. It was not even spotted on the first two scans. It was suggested that anything that small would be unlikely to explain my voice loss so there may be another cause and that might be the damage to the tissues in my neck.
So I have to sit and wait another 2 weeks before a diagnosis and then, if necessary, go on to treatment options. It's rather disappointing and a bit disheartening but I'll just get on with what I can for now and try to forget about it. I've certainly got plenty to do what with garden, kitchen, bathroom and exterior decorating. With luck it will all turn out to be a false alarm and we can get on with our trip to America in October. Without luck it could be a bit of a bummer.
Many of you have been invited to my party on Aug 30th. Just watch this space. If things go wrong I may have to cancel. My appointment is on Tuesday 26th so I hope I'll know something more then. If I have to cancel I'll try to email you and I'll post a notice here. I hope it won't be necessary.
Saturday 3 May 2008
Catching Up
Where to start??!!
Well, to deflect any concerns, there is no awful news to report. Difficulties and concerns yes, bad news no. So let's begin.
I am very much in a 'wait and see' stage. Cancer remains so hidden that the docs don't know whether I have it any more of whether it's all gone. Apparently just one missed cancer cell could be enough to start a new malignancy. Because they can't see and so don't know, treatment can be aggressive - very aggressive - as mine was. So now we are just waiting to see. One doctor told me that if nothing came back within 12 months I stood a good chance of having got rid of it, another suggested two years. At the moment every sore spot in my mouth, every lump and bump on my face or neck is a source of concern or alarm for Ellie and me but all have been dismissed by the docs who tell me how well I am and what good progress I am making. Occasionally my cynical side gets the better of me but life is too short to spend large sections of it worrying.
Now here's something they don't tell you in the financial planning books -retirement can be really expensive! We've had the chance to do all sorts of things we didn't do so much before. The kitchen refurbishment is half way through but we've ground to a stop through the need to re-think the finances.
We go out mid-week, visiting, shopping, walking, exploring. It all needs diesel and food and that mounts up.
We get to the stage where we feel as though we ought to be able to spoil ourselves - so we do.
We are almost living as though there'll be no tomorrow (perhaps there won't!). We've been on two holidays in the last month. To Madeira at the end of March and to the Lake District in the middle of April. Much appreciated and sorely needed, these put us back on a route to normality and saw us doing many of the activities we have enjoyed in the past - walking, taking photographs, exploring. The Lake District trip was our second house exchange, this time a non-concurrent one. The house was stayed in was beautiful. An end terrace house in a quiet country spot just out of Kendal. The owners are self employed and at least one of them is a property developer and house and garden designer. You may imagine that the house was lovely. It was also minimalist, totally uncluttered and beautifully organised. Everything had it's place and there was nothing superfluous. They are going to find Blackberry Cottage quite different when they come here this week to go to the Spring Garden Show at Malvern.
We were lucky with the weather on both holidays. Madeira was fine, not too hot, not too much strong sunlight - my 'delicate' skin can no longer be exposed to too much sunshine -(I feel a bit like a Victorian lady in the Raj!). Our last day was the reason we'd gone to Madeira that week - the high point of the flower festival - a parade of flower-decorated floats through the streets of Funchal. It was rained off with a vengeance, it didn't stop raining all day and apparently rained for the best part of the next week.
We were lucky in the Lakes as well. There was a strong, cold easterly wind. By the time we got towards the top of some of the lesser peaks - we didn't try any of the more demanding ones - the wind was thundering and standing up straight was a challenge. But it was dry, mostly and we did get a reasonable dose of sunshine.
If anyone wants to see my holidays snaps have a look here:
http://www.photobox.co.uk/album/29094330
http://www.photobox.co.uk/album/29093648
We have one more holiday arranged so far - another house exchange (and our first foreign one). We are exchanging with a couple from Marin County, California in October. Some of you will know that we have friends in central California so we'll be able to see them but also go off and explore parts of California we haven't seen before. En-route we'll spend a couple of days in California and then head for Calgary to go to Banff and on to see friends in British Columbia that we haven't seen for more that 12 years. Whilst we're in California we might take a side trip out to Las Vegas to go and see Cirque du Soleil. We've seen two of their shows already and been 'blown away' by the concept, the performance and the staging. Their shows are jaw-droppingly amazing and while the opportunity exists .....
As well as holidays we have been living it up in the cultural scene. The freedom of retirement means I no longer stop to ask myself whether I can go out mid week, so in the last couple of months we have been to:
Cirque du Soleil at the NIA. This was wonderful but SO different from the first show we saw it made us wonder what else they can do - the reason for our potential visit to Las Vegas.
The Vaughan-Williams 50th anniversary of his death, concert in Worcester Cathedral
A 'Shindig' drama production at Abberley Village Hall. It was a celebration of 'film-noire'. £12.50 for a three course meal and tickets to the show; incredible value. If you live in Worcestershire and you've not heard of Shindig (bringing live arts to your doorstep) get a booklet from your local library. There's a tremendous range of music, dance and drama and all really good value. We're off to another one tonight at Sinton Green. A John Godber play plus a meal for just £9 a ticket - you can't beat it.
The Australian Pink Floyd - a sensational tribute band with the lights, inflatable animals, cartoons, light show and volume of the originals. They were top notch musicians too. They were really good, even the bit of tongue that was stuck in their teeth. Virtually all the band shared the same name - Bruce, apart from the girls who were Sheila and the keyboard player, Rolf.
The following night (bad planning I think - guess who arranged it!) we went to the Huntingdon Hall in Worcester to see a Canadian Folk-Rock band called Tanglefoot. They were really good too. We'd never seen them before and I fancied trying something new.
Still to come, a Rolling Stones tribute band - the Counterfeit Stones and then Mark Knopffler (Dire Straits) live and real at the NEC. On midsummer's day were off to Symphony Hall to listed to Vaughan-Williams' Sea Symphony. And that, as they say, is that, for now at least.
As you can tell, thoughts of cancer have faded for now at least. The after-effects of the radio-therapy are still with me and are very slowly intensifying. It is such a slow, insidious process that really it's impossible to judge how things are changing. My neck and shoulder tissues get really stiff and I have to spend 5-10 minutes every morning and at odd-times during the day doing stretching exercises. The same is true of my mouth which is slowly tightening up and which also demands daily exercises. None of this is painful, at worst I can say it is uncomfortable but I can live with ( and most often forget) it. I am getting a little bit of NHS physiotherapy to stretch and ease the muscles in my neck and shoulder and this is helping to maintain as much movement as possible. I can work, garden, decorate, drive and do all the normal jobs I want to do but I do get some cramp in my left arm from time to time. The annoying thing is that I had none of these problems when I finished the radio-therapy, they have all built up since the treatment finished. As for the future, well I'll continue to have regular 4 to 6 weekly check-ups for now and some doctors tell me it will ease over time as the scar tissue softens up.
And now, a possible date for your diaries. This autumn sees several reasons for celebration. I'll have survived one year from my treatment, We'll have got through our first year of retirement without murdering each other and my 60th birthday will be rapidly approaching. So I'm in the first stages of planning a grand celebration on Saturday 30th August. It will probably be here at Blackberry Cottage and is likely to be an afternoon and evening affair. More details and invites will follow when we've had the time to think plans through, approach the neighbours and speak to the Parish Council about using the common. (I hope they might allow a corner for camping and parking.) If you think you'd like to come do let me know so I can get a rough idea of how many to plan for. For my ex-colleagues, look at it as a final fling before settling down to another term of hard slog.
Well, that's all for now. Stay smiling, keep looking forward and the worst will be behind you!
Hope to see or hear from you soon.
Well, to deflect any concerns, there is no awful news to report. Difficulties and concerns yes, bad news no. So let's begin.
I am very much in a 'wait and see' stage. Cancer remains so hidden that the docs don't know whether I have it any more of whether it's all gone. Apparently just one missed cancer cell could be enough to start a new malignancy. Because they can't see and so don't know, treatment can be aggressive - very aggressive - as mine was. So now we are just waiting to see. One doctor told me that if nothing came back within 12 months I stood a good chance of having got rid of it, another suggested two years. At the moment every sore spot in my mouth, every lump and bump on my face or neck is a source of concern or alarm for Ellie and me but all have been dismissed by the docs who tell me how well I am and what good progress I am making. Occasionally my cynical side gets the better of me but life is too short to spend large sections of it worrying.
Now here's something they don't tell you in the financial planning books -retirement can be really expensive! We've had the chance to do all sorts of things we didn't do so much before. The kitchen refurbishment is half way through but we've ground to a stop through the need to re-think the finances.
We go out mid-week, visiting, shopping, walking, exploring. It all needs diesel and food and that mounts up.
We get to the stage where we feel as though we ought to be able to spoil ourselves - so we do.
We are almost living as though there'll be no tomorrow (perhaps there won't!). We've been on two holidays in the last month. To Madeira at the end of March and to the Lake District in the middle of April. Much appreciated and sorely needed, these put us back on a route to normality and saw us doing many of the activities we have enjoyed in the past - walking, taking photographs, exploring. The Lake District trip was our second house exchange, this time a non-concurrent one. The house was stayed in was beautiful. An end terrace house in a quiet country spot just out of Kendal. The owners are self employed and at least one of them is a property developer and house and garden designer. You may imagine that the house was lovely. It was also minimalist, totally uncluttered and beautifully organised. Everything had it's place and there was nothing superfluous. They are going to find Blackberry Cottage quite different when they come here this week to go to the Spring Garden Show at Malvern.
We were lucky with the weather on both holidays. Madeira was fine, not too hot, not too much strong sunlight - my 'delicate' skin can no longer be exposed to too much sunshine -(I feel a bit like a Victorian lady in the Raj!). Our last day was the reason we'd gone to Madeira that week - the high point of the flower festival - a parade of flower-decorated floats through the streets of Funchal. It was rained off with a vengeance, it didn't stop raining all day and apparently rained for the best part of the next week.
We were lucky in the Lakes as well. There was a strong, cold easterly wind. By the time we got towards the top of some of the lesser peaks - we didn't try any of the more demanding ones - the wind was thundering and standing up straight was a challenge. But it was dry, mostly and we did get a reasonable dose of sunshine.
If anyone wants to see my holidays snaps have a look here:
http://www.photobox.co.uk/album/29094330
http://www.photobox.co.uk/album/29093648
We have one more holiday arranged so far - another house exchange (and our first foreign one). We are exchanging with a couple from Marin County, California in October. Some of you will know that we have friends in central California so we'll be able to see them but also go off and explore parts of California we haven't seen before. En-route we'll spend a couple of days in California and then head for Calgary to go to Banff and on to see friends in British Columbia that we haven't seen for more that 12 years. Whilst we're in California we might take a side trip out to Las Vegas to go and see Cirque du Soleil. We've seen two of their shows already and been 'blown away' by the concept, the performance and the staging. Their shows are jaw-droppingly amazing and while the opportunity exists .....
As well as holidays we have been living it up in the cultural scene. The freedom of retirement means I no longer stop to ask myself whether I can go out mid week, so in the last couple of months we have been to:
Cirque du Soleil at the NIA. This was wonderful but SO different from the first show we saw it made us wonder what else they can do - the reason for our potential visit to Las Vegas.
The Vaughan-Williams 50th anniversary of his death, concert in Worcester Cathedral
A 'Shindig' drama production at Abberley Village Hall. It was a celebration of 'film-noire'. £12.50 for a three course meal and tickets to the show; incredible value. If you live in Worcestershire and you've not heard of Shindig (bringing live arts to your doorstep) get a booklet from your local library. There's a tremendous range of music, dance and drama and all really good value. We're off to another one tonight at Sinton Green. A John Godber play plus a meal for just £9 a ticket - you can't beat it.
The Australian Pink Floyd - a sensational tribute band with the lights, inflatable animals, cartoons, light show and volume of the originals. They were top notch musicians too. They were really good, even the bit of tongue that was stuck in their teeth. Virtually all the band shared the same name - Bruce, apart from the girls who were Sheila and the keyboard player, Rolf.
The following night (bad planning I think - guess who arranged it!) we went to the Huntingdon Hall in Worcester to see a Canadian Folk-Rock band called Tanglefoot. They were really good too. We'd never seen them before and I fancied trying something new.
Still to come, a Rolling Stones tribute band - the Counterfeit Stones and then Mark Knopffler (Dire Straits) live and real at the NEC. On midsummer's day were off to Symphony Hall to listed to Vaughan-Williams' Sea Symphony. And that, as they say, is that, for now at least.
As you can tell, thoughts of cancer have faded for now at least. The after-effects of the radio-therapy are still with me and are very slowly intensifying. It is such a slow, insidious process that really it's impossible to judge how things are changing. My neck and shoulder tissues get really stiff and I have to spend 5-10 minutes every morning and at odd-times during the day doing stretching exercises. The same is true of my mouth which is slowly tightening up and which also demands daily exercises. None of this is painful, at worst I can say it is uncomfortable but I can live with ( and most often forget) it. I am getting a little bit of NHS physiotherapy to stretch and ease the muscles in my neck and shoulder and this is helping to maintain as much movement as possible. I can work, garden, decorate, drive and do all the normal jobs I want to do but I do get some cramp in my left arm from time to time. The annoying thing is that I had none of these problems when I finished the radio-therapy, they have all built up since the treatment finished. As for the future, well I'll continue to have regular 4 to 6 weekly check-ups for now and some doctors tell me it will ease over time as the scar tissue softens up.
And now, a possible date for your diaries. This autumn sees several reasons for celebration. I'll have survived one year from my treatment, We'll have got through our first year of retirement without murdering each other and my 60th birthday will be rapidly approaching. So I'm in the first stages of planning a grand celebration on Saturday 30th August. It will probably be here at Blackberry Cottage and is likely to be an afternoon and evening affair. More details and invites will follow when we've had the time to think plans through, approach the neighbours and speak to the Parish Council about using the common. (I hope they might allow a corner for camping and parking.) If you think you'd like to come do let me know so I can get a rough idea of how many to plan for. For my ex-colleagues, look at it as a final fling before settling down to another term of hard slog.
Well, that's all for now. Stay smiling, keep looking forward and the worst will be behind you!
Hope to see or hear from you soon.
Sunday 27 January 2008
No news is .......?
A number of friends have commented recently that nothing has appeared on this blog since November. They have wondered how I am and why I am so strangely silent. These are difficult queries to answer especially as it seems that, for some people at least, blogging and instant messaging are the new ways of talking to each other. As talking is a bit tiring for me you'd think I'd be blogging away like a good'un. The fact that I haven't been is a reflection of several things including a slower rate of change in my situation, me being a bit fed up with the constant listing of symptoms and after-effects, perhaps a degree of boredom and maybe avoidance and (more about this later) and other things to do.
So what's the latest on the health front? I've now had two monthly check ups since finishing the radio-therapy. The docs have been very happy with their handiwork and with my recovery. Indeed they keep telling me how young I am and how well I'm doing as though some how these elements of my situation are of credit to me. I keep saying that it's just my luck but they do seem to want to be complimentary. Whatever the truth or the training in bedside manner, my next monthly check up has been turned into a 6 weekly one. I hope this indicates a measure of optimism on the part of the butcher but we'll have to wait and see. I was told that if there was going to be any re-occurence it would most likely show up in between six and eighteen months. So any time now. Fortunately many of the after effects have faded and disappeared and I'm now left with the permanent changes and some long term effects that may fade away over a period of months. Permanent changes include being left with only half a beard. My left cheek and neck are now like a baby's bottom soft, smooth and silky! My right cheek still grows stubble at about an inch a day so by 5pm I'm getting strange looks in the high street! One of my neighbours is a make up artist so I my get her to make me some prosthetic stubble - could be a world first! A benefit of the 'Death of the Folicles' is that I no longer have hair growing inside my mouth. This inconvience was viewed dismissively by the butcher and the Dalek but was actually quite unpleasant as the tangled hairs acted as a food net and made eating more difficult. My skin is no longer sore but is still extra sensitive to UV light so sunbathing is out of the question without factor 60 for the next year or two.
I am left with two unpleasantnesses. The first is a taste in my mouth that is sour and stale - the morning after the night before sort of thing. It could be around for a long time so I such mints and brush my teeth a lot and these approaches do help. The taste is worse on some days than others but at least I do still have a sense of taste and can enjoy food and drink much as before.
The other is a general tightness in all the surgery scars. These have tightened and stiffened especially since the Dalek blasted them and they have restricted the movement of my head and mouth. I am no longer in possession of that teacher's essential possession - eye's in the back of my head. Exercise, massage and stretching are the order of the days and in time I should regain some more mobility here as well.
So, from here on in it is wait and see and hope that the Dalek did manage to blast every one of those nasty little cancer cells. If he got them then I am clear and will be able to get on with a normal retirement and at some time in the future I'll be writing my retirement blog rather than this one. If not I'm going to have some more unpleasantnesses to endure.
So, as a sort of introduction to retirement and to reassure you that life is no longer just about cancer and treatment here follows an update on what has been happening in Shavreenworld since the last blog entry.
Unusually we did not go away at Xmas or New Year. No need to get our sunshine at the most expensive time of year any more! We stayed at home and spent a very quiet Xmas with the parents and our very old cat. Enough food, very little drink, too much TV, some welcome visitors and some friends and family visited. It was quiet and somewhat boring but I did get a new camera and other bits and pieces so in between frequent bouts of sleeping I spent some time learning the intricacies of Photoshop and a graphics tablet and so on. I've been back to Shutterchance a lot recently and have posted a lot of pics so have a look if you're interested. I also went back to the Camera Club for the first time in 20+ years just last week - life getting back to usual. I'm now thinking of trying my hand at portraiture so, if there are any volunteers .....?
Photoshop is a vast and powerful program and although I used a version of it for years I only know a few of the basics. As a result I've enrolled on an adult education course to learn more of it's intricacies. An expensive business as now there is no financial support for the retired student. I've also re-started pottery. Both courses are at the Malvern Hills College so twice a week I shoot over there to pursue these interests. Elaine too as found some activites to get involved with. Whilst I'm doing Photoshop she's coiling, stretching, bending and contorting in a Yoga class and she's also rejoined a choir. We're keeping busy.
We've also booked a holiday to Madeira at the start of April, for the week of their flower festival. As there is a lot of interesting and challenging walking to do on the island we'll spend the next few weeks trying to get shape so we can enjoy some of the levada and ridge walks that we will want to try. As well as walking we'll expect to visit some gardens and even go on a whale watching trip. This will be our first holiday for more than a year so you may imagine that we are looking forward to it. At the same time we are trying to organise a house exchange to central California for the Autumn. We have some interest but unfortunately the nicest looking place is lived in by a lady who is allergic to cats. It will be hard for her to come here especially as we have doubled the number of feline residents.
Poor old Piglet went rapidly downhill in the run up to Xmas. He found it increasingly difficult to eat even though he was constantly interested in food. Once it was put out for him he would give it a few licks and turn away. He got weaker and weaker until eventually we took him for a last visit to the vet. A house without cats or children is an empty house and as there are no children here we went out and got a couple of rescue cats from the Cats's Protection prison... and here they are!
This is Suki. She is a female although Elaine was convinced that all ginger cats are male. Apparently not. Both cats seem to have come from a home where a very laissez-faire attitude was taken to coming and going. They had complete freedom of access and arrived only when they wanted food. They were not aggressive but were certainly unused to human contact. Consequently they were (and still are) very easily spooked. A little move, an appearance in a doorway or an unexpected noise can have them dashing for cover behind the piano or under the sofa. However after almost four weeks they are getting more settled and are proving to be very affectionate and most appreciative of fuss and petting. Once they have the freedom of the house we'll expect them to start earning their keep by getting on with their mouse control duties but for now they are still finding their feet. One of the reasons for not going away too much is to give them a chance to settle before they have to go back to prison again.
This one is Callie. Although she is larger and probably older she is also the more nervy one. The greatest shame is that they're not very keen on each other so we do get chasing, hissing and spitting games from time to time. Hopefully with time they'll learn to put up with each other. They certainly eat in close proximity without problem and mostly just avoid each other for the rest of the time.
So there you are folks, the latest update on the cancer saga. We do hope to visit friends around and about as Spring rushes on and plan to be in London at some point over February half-term. Now we have more time you'd expect us to have more time to visit but I'm not sure it works like that!
The next stage in my recuperation will be to start playing golf again. As my left shoulder is still stiff and stretched it could be hard. But you know what, the sun is shining and I'm off to give it a try this afternoon!
I hope you are all well. Thanks to those of you who have contacted me to find out how I am and you know that I'm looking forward to seeing those of you who are not too far away.
Ron
So what's the latest on the health front? I've now had two monthly check ups since finishing the radio-therapy. The docs have been very happy with their handiwork and with my recovery. Indeed they keep telling me how young I am and how well I'm doing as though some how these elements of my situation are of credit to me. I keep saying that it's just my luck but they do seem to want to be complimentary. Whatever the truth or the training in bedside manner, my next monthly check up has been turned into a 6 weekly one. I hope this indicates a measure of optimism on the part of the butcher but we'll have to wait and see. I was told that if there was going to be any re-occurence it would most likely show up in between six and eighteen months. So any time now. Fortunately many of the after effects have faded and disappeared and I'm now left with the permanent changes and some long term effects that may fade away over a period of months. Permanent changes include being left with only half a beard. My left cheek and neck are now like a baby's bottom soft, smooth and silky! My right cheek still grows stubble at about an inch a day so by 5pm I'm getting strange looks in the high street! One of my neighbours is a make up artist so I my get her to make me some prosthetic stubble - could be a world first! A benefit of the 'Death of the Folicles' is that I no longer have hair growing inside my mouth. This inconvience was viewed dismissively by the butcher and the Dalek but was actually quite unpleasant as the tangled hairs acted as a food net and made eating more difficult. My skin is no longer sore but is still extra sensitive to UV light so sunbathing is out of the question without factor 60 for the next year or two.
I am left with two unpleasantnesses. The first is a taste in my mouth that is sour and stale - the morning after the night before sort of thing. It could be around for a long time so I such mints and brush my teeth a lot and these approaches do help. The taste is worse on some days than others but at least I do still have a sense of taste and can enjoy food and drink much as before.
The other is a general tightness in all the surgery scars. These have tightened and stiffened especially since the Dalek blasted them and they have restricted the movement of my head and mouth. I am no longer in possession of that teacher's essential possession - eye's in the back of my head. Exercise, massage and stretching are the order of the days and in time I should regain some more mobility here as well.
So, from here on in it is wait and see and hope that the Dalek did manage to blast every one of those nasty little cancer cells. If he got them then I am clear and will be able to get on with a normal retirement and at some time in the future I'll be writing my retirement blog rather than this one. If not I'm going to have some more unpleasantnesses to endure.
So, as a sort of introduction to retirement and to reassure you that life is no longer just about cancer and treatment here follows an update on what has been happening in Shavreenworld since the last blog entry.
Unusually we did not go away at Xmas or New Year. No need to get our sunshine at the most expensive time of year any more! We stayed at home and spent a very quiet Xmas with the parents and our very old cat. Enough food, very little drink, too much TV, some welcome visitors and some friends and family visited. It was quiet and somewhat boring but I did get a new camera and other bits and pieces so in between frequent bouts of sleeping I spent some time learning the intricacies of Photoshop and a graphics tablet and so on. I've been back to Shutterchance a lot recently and have posted a lot of pics so have a look if you're interested. I also went back to the Camera Club for the first time in 20+ years just last week - life getting back to usual. I'm now thinking of trying my hand at portraiture so, if there are any volunteers .....?
Photoshop is a vast and powerful program and although I used a version of it for years I only know a few of the basics. As a result I've enrolled on an adult education course to learn more of it's intricacies. An expensive business as now there is no financial support for the retired student. I've also re-started pottery. Both courses are at the Malvern Hills College so twice a week I shoot over there to pursue these interests. Elaine too as found some activites to get involved with. Whilst I'm doing Photoshop she's coiling, stretching, bending and contorting in a Yoga class and she's also rejoined a choir. We're keeping busy.
We've also booked a holiday to Madeira at the start of April, for the week of their flower festival. As there is a lot of interesting and challenging walking to do on the island we'll spend the next few weeks trying to get shape so we can enjoy some of the levada and ridge walks that we will want to try. As well as walking we'll expect to visit some gardens and even go on a whale watching trip. This will be our first holiday for more than a year so you may imagine that we are looking forward to it. At the same time we are trying to organise a house exchange to central California for the Autumn. We have some interest but unfortunately the nicest looking place is lived in by a lady who is allergic to cats. It will be hard for her to come here especially as we have doubled the number of feline residents.
Poor old Piglet went rapidly downhill in the run up to Xmas. He found it increasingly difficult to eat even though he was constantly interested in food. Once it was put out for him he would give it a few licks and turn away. He got weaker and weaker until eventually we took him for a last visit to the vet. A house without cats or children is an empty house and as there are no children here we went out and got a couple of rescue cats from the Cats's Protection prison... and here they are!
This is Suki. She is a female although Elaine was convinced that all ginger cats are male. Apparently not. Both cats seem to have come from a home where a very laissez-faire attitude was taken to coming and going. They had complete freedom of access and arrived only when they wanted food. They were not aggressive but were certainly unused to human contact. Consequently they were (and still are) very easily spooked. A little move, an appearance in a doorway or an unexpected noise can have them dashing for cover behind the piano or under the sofa. However after almost four weeks they are getting more settled and are proving to be very affectionate and most appreciative of fuss and petting. Once they have the freedom of the house we'll expect them to start earning their keep by getting on with their mouse control duties but for now they are still finding their feet. One of the reasons for not going away too much is to give them a chance to settle before they have to go back to prison again.
This one is Callie. Although she is larger and probably older she is also the more nervy one. The greatest shame is that they're not very keen on each other so we do get chasing, hissing and spitting games from time to time. Hopefully with time they'll learn to put up with each other. They certainly eat in close proximity without problem and mostly just avoid each other for the rest of the time.So there you are folks, the latest update on the cancer saga. We do hope to visit friends around and about as Spring rushes on and plan to be in London at some point over February half-term. Now we have more time you'd expect us to have more time to visit but I'm not sure it works like that!
The next stage in my recuperation will be to start playing golf again. As my left shoulder is still stiff and stretched it could be hard. But you know what, the sun is shining and I'm off to give it a try this afternoon!
I hope you are all well. Thanks to those of you who have contacted me to find out how I am and you know that I'm looking forward to seeing those of you who are not too far away.
Ron
Tuesday 27 November 2007
The Radioactive Ramblings of the Beetroot Boy
Yep, that's me folks, the Beetroot Boy. Not because I blush embarrassingly every time I see a picture of a pretty girl in her underwear - haven't done that since I was a teenager! Not because I have joined the ranks of the agricultural labour force to supplement my measly pension. Not because I've suddenly discovered a missing delicacy from my normal diet. None of these explain my adoption of a superhero monika.
The Beetroot Boy - in bed. Don't get too excited girls!
That white line down my throat is where the Dalek shielded my spinal chord.
A very considerate Dalek!
I escaped from the attentions of the Dalek on Nov 16th. I had been warned. The results of the treatment had been explained and described. I was told about after-effects. I knew that it wasn't all over, that things would get worse before they got better. But there is a division been intellectual knowledge and physical experience that is surreal. Consequently, despite all the preparation I really had no idea what to expect and how it would make me feel. I had been cooked and pickled for five weeks and during the next ten days or so the effects just got worse. Now my face and neck are a delicious shade of maroon. I could almost substitute for a stop light. Still, that does come in useful at night when I have to find my way to the loo in the dark. People come up to me on cold days and hold up their hands hoping to get warmed up in the glow. Fortunately most of my face and neck is still pretty numb from the surgery so the pain merchants have have had their plans undermined. Where I'm not numb things have become quite sore in the last few days as the top, irradiated layer of skin sloughs off. There are other after-effects as well so for those of you who like all the gory details -
Mouth and neck are swollen and stiff so ...
Turning my head and checking over my shoulder before pulling off when driving is harder than it should be.
My lips are sticky and dry especially when working outdoors.
My lower lip is really sensitive so drinking anything hot is impossible.
The tip of my nose is blistered internally and externally and breathing has been hard although this is improving now.
Whenever I eat my mouth stings and feels as though I've rinsed with brine.
The movement in my jaw is much more restricted now.
However there are some pluses as well.
I'm still eating and haven't lost any weight.
I'm not biting my tongue any more.
My mouth is well enough now to do some gentle jaw stretching exercises.
My birthday card from my sister (Nov 8th for those of you who want to add it to your diary dates) wished that this would be my worst birthday ever. She wasn't far wrong. Over the last week I do feel that I have finally earned all the positive comments about courage and bravery you lovely people have made over the life of this blog. For the first time life has been really tough and I've found it hard going. So, what do you do at times like this? Well, why not try a bit of retail therapy.
Retiring and getting those lovely tax-free lump sums have come at the right time and there's nothing like sitting and browsing the internet for distraction. I've read reviews and compared prices for dozens of different items. I've checked specifications and availability, read up on technological advancements and calculated degrees of bargain. I've been deep into the basement of information overload - but it has stopped me feeling sorry for myself. So apart from the new car we decided to revamp the kitchen. We already have a new dishwasher and fridge and we're looking for a built-in double oven and induction hob. Any recommendations gratefully received! On top of that I've got a new laptop (I had to give the school one back) and have bought Elaine a new digital camera for Xmas - one that has a purpose built underwater housing available. We fully intend getting back to scuba diving. Add to that list clothes, shoes, subs to three courses - pottery, photography and singing (for Ellie), concert tickets (they don't come cheap these days do they?!) and those of you who knew me as a stingy, careful, miser will wonder what has happened! I feel as though I've spent more money on us and the house in the past two months than the previous two years!
And today seems to have been a bit of a turning point. For the first time I've wanted to and had enough drive to spend the day working on the house. Nothing major or challenging but enough to keep me busy and active, leaving me satisfied as I sit and write this. I also suspect that I might, just, be through the worst of the after-effects. Ellie tells me that my beetroot may just be starting to fade, as I've said already my nose is not so sore, I'm not sure about my mouth except that as I stopped taking the codine some days ago it must be less painful than it was. I hope there will be no more nasty surprises and that the speed of recovery will accelerate. On Friday 16th I promised Elaine I was going to make the fastest recovery ever so I'll have to get on with it - won't I?
So, there you go - the latest update. Over the weeks a good number of you have told me how brave, courageous and even inspirational I have been. It's nice to hear it, even if it is a load of old bull! I've had no choice, it was going to happen and I've had to put up with it so I've just made the best of it. As I said, the last week has been hard but I hope that's over now. What I'm less happy about is that this blog is turning into a list of symptoms and hardships so after today I hope I'll be able to leave the rapidly fading after-effects behind. Perhaps next time I'll write about Shindig - an organisation those of you living in the Worcestershire area will be able to take advantage of - and other ways of ignoring the fact that I'm supposed to be unwell.
Stay smiling
Ron.
The Beetroot Boy - in bed. Don't get too excited girls!That white line down my throat is where the Dalek shielded my spinal chord.
A very considerate Dalek!
I escaped from the attentions of the Dalek on Nov 16th. I had been warned. The results of the treatment had been explained and described. I was told about after-effects. I knew that it wasn't all over, that things would get worse before they got better. But there is a division been intellectual knowledge and physical experience that is surreal. Consequently, despite all the preparation I really had no idea what to expect and how it would make me feel. I had been cooked and pickled for five weeks and during the next ten days or so the effects just got worse. Now my face and neck are a delicious shade of maroon. I could almost substitute for a stop light. Still, that does come in useful at night when I have to find my way to the loo in the dark. People come up to me on cold days and hold up their hands hoping to get warmed up in the glow. Fortunately most of my face and neck is still pretty numb from the surgery so the pain merchants have have had their plans undermined. Where I'm not numb things have become quite sore in the last few days as the top, irradiated layer of skin sloughs off. There are other after-effects as well so for those of you who like all the gory details -
Mouth and neck are swollen and stiff so ...
Turning my head and checking over my shoulder before pulling off when driving is harder than it should be.
My lips are sticky and dry especially when working outdoors.
My lower lip is really sensitive so drinking anything hot is impossible.
The tip of my nose is blistered internally and externally and breathing has been hard although this is improving now.
Whenever I eat my mouth stings and feels as though I've rinsed with brine.
The movement in my jaw is much more restricted now.
However there are some pluses as well.
I'm still eating and haven't lost any weight.
I'm not biting my tongue any more.
My mouth is well enough now to do some gentle jaw stretching exercises.
My birthday card from my sister (Nov 8th for those of you who want to add it to your diary dates) wished that this would be my worst birthday ever. She wasn't far wrong. Over the last week I do feel that I have finally earned all the positive comments about courage and bravery you lovely people have made over the life of this blog. For the first time life has been really tough and I've found it hard going. So, what do you do at times like this? Well, why not try a bit of retail therapy.
Retiring and getting those lovely tax-free lump sums have come at the right time and there's nothing like sitting and browsing the internet for distraction. I've read reviews and compared prices for dozens of different items. I've checked specifications and availability, read up on technological advancements and calculated degrees of bargain. I've been deep into the basement of information overload - but it has stopped me feeling sorry for myself. So apart from the new car we decided to revamp the kitchen. We already have a new dishwasher and fridge and we're looking for a built-in double oven and induction hob. Any recommendations gratefully received! On top of that I've got a new laptop (I had to give the school one back) and have bought Elaine a new digital camera for Xmas - one that has a purpose built underwater housing available. We fully intend getting back to scuba diving. Add to that list clothes, shoes, subs to three courses - pottery, photography and singing (for Ellie), concert tickets (they don't come cheap these days do they?!) and those of you who knew me as a stingy, careful, miser will wonder what has happened! I feel as though I've spent more money on us and the house in the past two months than the previous two years!
And today seems to have been a bit of a turning point. For the first time I've wanted to and had enough drive to spend the day working on the house. Nothing major or challenging but enough to keep me busy and active, leaving me satisfied as I sit and write this. I also suspect that I might, just, be through the worst of the after-effects. Ellie tells me that my beetroot may just be starting to fade, as I've said already my nose is not so sore, I'm not sure about my mouth except that as I stopped taking the codine some days ago it must be less painful than it was. I hope there will be no more nasty surprises and that the speed of recovery will accelerate. On Friday 16th I promised Elaine I was going to make the fastest recovery ever so I'll have to get on with it - won't I?
So, there you go - the latest update. Over the weeks a good number of you have told me how brave, courageous and even inspirational I have been. It's nice to hear it, even if it is a load of old bull! I've had no choice, it was going to happen and I've had to put up with it so I've just made the best of it. As I said, the last week has been hard but I hope that's over now. What I'm less happy about is that this blog is turning into a list of symptoms and hardships so after today I hope I'll be able to leave the rapidly fading after-effects behind. Perhaps next time I'll write about Shindig - an organisation those of you living in the Worcestershire area will be able to take advantage of - and other ways of ignoring the fact that I'm supposed to be unwell.
Stay smiling
Ron.
Sunday 4 November 2007
The Dalek Bites Back
The Daleks have changed their tactics. No longer do they approach the unlucky, mechanically screaming, "Exterminate, exterminate!" No longer do they approach the unlucky with their ray guns flashing green rays thus turning the victim into a flashing and rapidly disappearing black skeleton.
Today they seduce their victims with more gentle approach. "Just come and lie on this table." "You won't feel a thing." "It will all be over in 40 seconds." The result is compelling and encourages a sense of confidence and assuredness. Don't be deceived. They still aim to fill your mouth with hot tar and then to give you 'Exterminate' nightmares every night.
I was told that for the first two weeks I'd notice very little. My skin might redden a bit, my neck might get a bit stiff and so on. Then, suddenly things might get worse. They were right! Last Friday I was OK. I went out for an Indian with my mouth feeling a little tight and a hint of soreness. To be frank I did fall asleep in front of the TV when we got home - but there's nothing new in that.
At this point those of you of nervous or fragile disposition had better look away as I don't want to send you off looking for a bucket to be ill in!
This weekend my mouth is ulcerated and blistered, my tongue is ulcerated and bleeding. Every time I talk the ulcers on my tongue rub against my teeth so I am reduced to communicating in grunts - one grunt for yes, two for no and gestures for everything else. I can't eat because of the ulcers. Even soup is difficult as I can't deal with even tiny lumps of meat or vegetable. Fortunately I can still swallow so I am still able to drink my complete diet drinks to make sure my nutrition is kept up. Eventually I may have to resort to injecting the feeds down the tube and straight into my stomach but for now I am still able to enjoy the delights of milkshake-like drinks in vanilla, banana, chocolate, toffee, strawberry, orange and tropical fruit flavours.
The only thing that keeps me going is my bottle of Codine Phosphate syrup. Until Thursday I was struggling on with Paracetamol and Ibuprofen. They helped for a day or two but I was really suffering. Fortunately the Dalek and his slaves are really clued up as to how their zapping might effect the unlucky. I only had to say that I was finding it difficult to cope to get moved up the drugs hierarchy. So although I still have ulcers and blisters. Although my lips are cracked and bleeding, although my neck is so swollen that I can't look over my shoulder, I'm not feeling too uncomfortable or too unhappy. After all, once tomorrow's treatment is done there will only be one Monday left! Some of the slaves have even tried to be encouraging by suggesting I might reach a plateau and things will stop getting worse. My cynical side says its just going to get worse and worse right to the end. Well we'll see.
Thanks to all of you who have offered thoughts, prayers, support, comfort and friendship. I can't tell you how much it has helped me and helped Elaine and lifted our spirits. Just a little way to go now and it might, just, all be over.
Ron
Today they seduce their victims with more gentle approach. "Just come and lie on this table." "You won't feel a thing." "It will all be over in 40 seconds." The result is compelling and encourages a sense of confidence and assuredness. Don't be deceived. They still aim to fill your mouth with hot tar and then to give you 'Exterminate' nightmares every night.
I was told that for the first two weeks I'd notice very little. My skin might redden a bit, my neck might get a bit stiff and so on. Then, suddenly things might get worse. They were right! Last Friday I was OK. I went out for an Indian with my mouth feeling a little tight and a hint of soreness. To be frank I did fall asleep in front of the TV when we got home - but there's nothing new in that.
At this point those of you of nervous or fragile disposition had better look away as I don't want to send you off looking for a bucket to be ill in!
This weekend my mouth is ulcerated and blistered, my tongue is ulcerated and bleeding. Every time I talk the ulcers on my tongue rub against my teeth so I am reduced to communicating in grunts - one grunt for yes, two for no and gestures for everything else. I can't eat because of the ulcers. Even soup is difficult as I can't deal with even tiny lumps of meat or vegetable. Fortunately I can still swallow so I am still able to drink my complete diet drinks to make sure my nutrition is kept up. Eventually I may have to resort to injecting the feeds down the tube and straight into my stomach but for now I am still able to enjoy the delights of milkshake-like drinks in vanilla, banana, chocolate, toffee, strawberry, orange and tropical fruit flavours.
The only thing that keeps me going is my bottle of Codine Phosphate syrup. Until Thursday I was struggling on with Paracetamol and Ibuprofen. They helped for a day or two but I was really suffering. Fortunately the Dalek and his slaves are really clued up as to how their zapping might effect the unlucky. I only had to say that I was finding it difficult to cope to get moved up the drugs hierarchy. So although I still have ulcers and blisters. Although my lips are cracked and bleeding, although my neck is so swollen that I can't look over my shoulder, I'm not feeling too uncomfortable or too unhappy. After all, once tomorrow's treatment is done there will only be one Monday left! Some of the slaves have even tried to be encouraging by suggesting I might reach a plateau and things will stop getting worse. My cynical side says its just going to get worse and worse right to the end. Well we'll see.
Thanks to all of you who have offered thoughts, prayers, support, comfort and friendship. I can't tell you how much it has helped me and helped Elaine and lifted our spirits. Just a little way to go now and it might, just, all be over.
Ron
Tuesday 23 October 2007
Half Baked - almost !!
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.
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.
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.
Sunday 23 September 2007
Quack or cure?
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.
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.
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