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
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