Four out of five days of the heavy dose of chemo. I'm not feeling quite as bad as I did the previous cycle. I guess the body gets used to it to a certain extent. My hands have even been steady enough to do a bit of soldering.
Olga and I were enormously cheered to read the comment posted this afternoon by Tara Stevens to my post back in August about clomipramine. She writes that her mother was diagnosed with inoperable brain cancer and had aggressive breast cancer as well and was given six months to live. After taking clomipramine both tumours eventually disappeared and she has beaten the doctors' prognosis by six years!
If Tara's mum can do it so can I. We'll beat that bugger!
27 December - Third chemotherapy cycle
Christmas is over. I hope you all had a good one. Ours was fine - quiet, spent at home enjoying some nice food and watching undemanding TV.
I allowed myself two small glasses of wine with dinner on Christmas Eve and Christmas Day. I did feel a bit tipsy later on, but that is pretty much how I feel most of the time at the moment so I don't think I can really blame the wine. Nor was it necessarily responsible for the slight headache I had on Christmas morning, as I didn't have one on Boxing Day morning. But I'm not in a hurry to try wine again as I haven't been missing it that much anyway.
On Boxing Day I started the third chemotherapy cycle. 400mg of temozolomide a day for the next 5 days. So I'm preparing for a couple of weeks of feeling crappy and lethargic. My mouth is already starting to feel like the inside of a sumo wrestler's jockstrap. No pain, no gain as they say.
I allowed myself two small glasses of wine with dinner on Christmas Eve and Christmas Day. I did feel a bit tipsy later on, but that is pretty much how I feel most of the time at the moment so I don't think I can really blame the wine. Nor was it necessarily responsible for the slight headache I had on Christmas morning, as I didn't have one on Boxing Day morning. But I'm not in a hurry to try wine again as I haven't been missing it that much anyway.
On Boxing Day I started the third chemotherapy cycle. 400mg of temozolomide a day for the next 5 days. So I'm preparing for a couple of weeks of feeling crappy and lethargic. My mouth is already starting to feel like the inside of a sumo wrestler's jockstrap. No pain, no gain as they say.
23 December - Nothing To Report
Just a brief update following our hospital visit this afternoon. Nothing To Report. My blood count is OK so we are all set to start the third chemo cycle next week.
I'm not getting an MRI scan any time soon. Olga and I would really like to see evidence that we are beating the tumour but according to the doctor, a scan this soon after radiotherapy could give misleading results due to side effects of the treatment. The tumour could actually appear to have got bigger. I probably won't get a scan for another 4 months.
The best sign that there is nothing to worry about is that I don't experience tumour symptoms such as headaches, seizures or vomiting. So I just have to be a patient patient and keep on taking the tablets.
Meanwhile, Christmas starts now! I hope yours is a happy one too!
I'm not getting an MRI scan any time soon. Olga and I would really like to see evidence that we are beating the tumour but according to the doctor, a scan this soon after radiotherapy could give misleading results due to side effects of the treatment. The tumour could actually appear to have got bigger. I probably won't get a scan for another 4 months.
The best sign that there is nothing to worry about is that I don't experience tumour symptoms such as headaches, seizures or vomiting. So I just have to be a patient patient and keep on taking the tablets.
Meanwhile, Christmas starts now! I hope yours is a happy one too!
22 December - Looking forward to Christmas
Looking forward to Christmas. Not that life isn't like one long holiday now. :) But tomorrow afternoon we have an appointment with the consultant in Carlisle, just to remind me that it isn't one. I'm not expecting to learn anything new. There isn't time for me to have an MRI scan while I'm there. It's just for a blood count to confirm that I'm OK to start the third cycle of chemotherapy. And to collect the tablets, which hopefully the hospital pharmacy will have in stock this time!
I'm feeling slightly better each day. I'm certainly up for Christmas dinner now! But my brain is still running slow. And I wish I could get rid of the unsteadiness on my feet, for which reason I have never, in all the time since I came out of hospital at the end of June, gone anywhere without Olga by my side to take my hand if I feel I'm going to fall.
I have a problem with stairs. I even have a bit of a problem with the stairs at home. Fortunately at home there is a bannister I can grip when descending so if I stumble I don't fall. But faced with even just a couple of steps down and nothing to hang on to, like the steps to the street from one of the older shops in town, and I'm in big trouble. I wonder if I'll ever again climb one of the Lakeland fells. It's not a matter of not having the strength to climb, it's getting vertigo when I have to descend.
The other annoying problem I have is that whenever I do go for a walk by the end I'm sweating profusely. By the time I'm home I've soaked through two layers of clothing. I have to lie down and relax for 15 or 20 minutes until I have stopped sweating, then have a shower and a change of clothes. It's a bind, and makes me reluctant to go out, though I need the exercise and do feel better after it.
I've put on about 5 kilos since all this started. I used to be 88kg (though trying to get down to 85) but now I'm up to 93kg. But it's Christmas and I'm off the chemo for a few more days so to hell with it, I'll eat drink and be merry. Tomorrow I'll diet.
I'm feeling slightly better each day. I'm certainly up for Christmas dinner now! But my brain is still running slow. And I wish I could get rid of the unsteadiness on my feet, for which reason I have never, in all the time since I came out of hospital at the end of June, gone anywhere without Olga by my side to take my hand if I feel I'm going to fall.
I have a problem with stairs. I even have a bit of a problem with the stairs at home. Fortunately at home there is a bannister I can grip when descending so if I stumble I don't fall. But faced with even just a couple of steps down and nothing to hang on to, like the steps to the street from one of the older shops in town, and I'm in big trouble. I wonder if I'll ever again climb one of the Lakeland fells. It's not a matter of not having the strength to climb, it's getting vertigo when I have to descend.
The other annoying problem I have is that whenever I do go for a walk by the end I'm sweating profusely. By the time I'm home I've soaked through two layers of clothing. I have to lie down and relax for 15 or 20 minutes until I have stopped sweating, then have a shower and a change of clothes. It's a bind, and makes me reluctant to go out, though I need the exercise and do feel better after it.
I've put on about 5 kilos since all this started. I used to be 88kg (though trying to get down to 85) but now I'm up to 93kg. But it's Christmas and I'm off the chemo for a few more days so to hell with it, I'll eat drink and be merry. Tomorrow I'll diet.
14 December - Eye test
Went for an eye test this afternoon. The consultant oncologist suggested I have this done when I mentioned to him that I often had blurred vision. But as I expected there is nothing wrong with my eyes as such. Nothing new wrong, anyway. My prescription has hardly changed since my eyes were last tested by him a couple of years ago. So my vision problems are probably caused by the medication and I'll just have to put up with it until I'm taking fewer tablets and my brain has a chance to adapt to some of these side effects.
My peripheral vision was tested on a machine where you have to push a button to record how many green dots you can see. I missed a few because my attention tends to wander after a while. Olga has noticed this before. Sometimes she sees me sitting and asks what I'm thinking about. I reply "Sometimes I sits and thinks, and sometimes I just sits!"
My peripheral vision was tested on a machine where you have to push a button to record how many green dots you can see. I missed a few because my attention tends to wander after a while. Olga has noticed this before. Sometimes she sees me sitting and asks what I'm thinking about. I reply "Sometimes I sits and thinks, and sometimes I just sits!"
13 December - Feeling a bit better
This has been the first day after I took the last of the big dose of temozolomide that I have started feeling a bit better. I have begun showing an interest in more foods and I've also started to find the energy and interest to do things instead of vegetating in my recliner. I guess I have to get used to the idea that the first couple of weeks of each chemo cycle are going to be basically a write-off.
Only four more cycles to go. At least (as I mentioned in my previous post) I don't have to start again until after Christmas.
Only four more cycles to go. At least (as I mentioned in my previous post) I don't have to start again until after Christmas.
4 December - Off the temozolomide
I've been off the temozolomide for a couple of days now. Still feeling mildly nauseous. Not enough to be in any real danger of throwing up, but enough that I probably would not bother to eat if Olga hadn't gone to the trouble of putting food in front of me.
Fortuitously, I am not due the next batch of poison until just after the Christmas festivities. Hopefully my appetite will be restored by then. I do like my roast turkey and Christmas pudding, not to mention my Camembert and a nice piece of crumbly Cheddar.
I normally also enjoy a glass or three of red wine to go with the aforementioned items so it has been quite a hardship having to avoid alcohol for the last few months. Alcohol is not exactly prohibited, particularly by the chemotherapy, but it is recommended to avoid it if you take clomipramine as it increases the side effects. Unfortunately clomipramine is not one of those drugs you can just stop taking for a few days. You have to change the dose gradually. So I can't just come off it for a Christmas / New Year break.
All being well I will allow myself a trial glass of wine on Christmas Eve to see what happens. If that causes no ill effects then I have two more days to finish the bottle before my next batch of chemotherapy tablets. Because although as I said the warnings about alcohol don't apply to the temozolomide, I think that taking alcohol along with with temo, clomipramine, dexomethazone and all the other tablets would be a bit too much.
Fortuitously, I am not due the next batch of poison until just after the Christmas festivities. Hopefully my appetite will be restored by then. I do like my roast turkey and Christmas pudding, not to mention my Camembert and a nice piece of crumbly Cheddar.
I normally also enjoy a glass or three of red wine to go with the aforementioned items so it has been quite a hardship having to avoid alcohol for the last few months. Alcohol is not exactly prohibited, particularly by the chemotherapy, but it is recommended to avoid it if you take clomipramine as it increases the side effects. Unfortunately clomipramine is not one of those drugs you can just stop taking for a few days. You have to change the dose gradually. So I can't just come off it for a Christmas / New Year break.
All being well I will allow myself a trial glass of wine on Christmas Eve to see what happens. If that causes no ill effects then I have two more days to finish the bottle before my next batch of chemotherapy tablets. Because although as I said the warnings about alcohol don't apply to the temozolomide, I think that taking alcohol along with with temo, clomipramine, dexomethazone and all the other tablets would be a bit too much.
30 November - The foul taste is back
Four days into Cycle 2 of the high dose chemo and the foul taste in my mouth is back. I still consider that I've been fairly lucky as whilst the side effects of the temozolomide haven't been pleasant they have not been intolerable.
Despite taking laxatives before I started my bowels were once again set like concrete by day 3. And whereas I normally eat just about anything my appetite now is not as great as usual and there are some foods I just don't fancy at the moment. I don't even feel like chocolate!
Olga said she noticed the chemo was making me slow-witted. I can certainly testify to that. I'd rather not think how many hours I spent trying to get some radio and computer stuff to work for reasons that should have been blindingly obvious to anyone with a functioning brain. Ah well, nobody said this was supposed to be fun.
Despite taking laxatives before I started my bowels were once again set like concrete by day 3. And whereas I normally eat just about anything my appetite now is not as great as usual and there are some foods I just don't fancy at the moment. I don't even feel like chocolate!
Olga said she noticed the chemo was making me slow-witted. I can certainly testify to that. I'd rather not think how many hours I spent trying to get some radio and computer stuff to work for reasons that should have been blindingly obvious to anyone with a functioning brain. Ah well, nobody said this was supposed to be fun.
26 November - Feeling depressed
I hope that clomipramine is more effective against cancer than it is as an antidepressant. Because I have been on the full 150mg dose for several weeks now and yet I'm feeling quite depressed. The dizziness / balance issue I have complained of doesn't help my mood as it thwarts any attempt to try to lead a normal life. Neither does it help that I decided to see if I could sell our website business in order to devote my time and strength to fighting the cancer and enjoying what's left of my life. As tasks go it is right down there with selling one of your children into slavery and planning your own funeral. Perhaps it would be better just to let the business die a natural death.
On Friday afternoon we had two appointments at the Radiotherapy Department in Carlisle, first to be given a blood test and then to see the consultant. Originally the appointments had been on separate days but the hospital phoned to rearrange it so we only had to make one round trip. My blood counts were fine, so there was no impediment to starting the second cycle of heavy chemotherapy. However the radiotherapy should not be causing any side effects this long after it finished. It might be the clomipramine instead. So I am to have a new MRI scan to see what might be going on.
Unfortunately the plan to start the second cycle of chemo this weekend failed because when Olga went to the hospital pharmacy to get the medication they did not have sufficient temozolomide tablets. Apparently I am the only person in North Cumbria to be receiving this particular medication. You would think that with all the managers employed in the NHS someone would have devised a system that ensured the hospital pharmacy had stock of the drugs needed by current patients. Obviously not.
We have just had a phone call to say that the hospital will send us the remaining tablets by taxi on Tuesday afternoon. With the ones that we have we can start the cycle tomorrow (Sunday.) This delay will at least mean that I won't be starting cycle 3 on Christmas Day.
On Friday afternoon we had two appointments at the Radiotherapy Department in Carlisle, first to be given a blood test and then to see the consultant. Originally the appointments had been on separate days but the hospital phoned to rearrange it so we only had to make one round trip. My blood counts were fine, so there was no impediment to starting the second cycle of heavy chemotherapy. However the radiotherapy should not be causing any side effects this long after it finished. It might be the clomipramine instead. So I am to have a new MRI scan to see what might be going on.
Unfortunately the plan to start the second cycle of chemo this weekend failed because when Olga went to the hospital pharmacy to get the medication they did not have sufficient temozolomide tablets. Apparently I am the only person in North Cumbria to be receiving this particular medication. You would think that with all the managers employed in the NHS someone would have devised a system that ensured the hospital pharmacy had stock of the drugs needed by current patients. Obviously not.
We have just had a phone call to say that the hospital will send us the remaining tablets by taxi on Tuesday afternoon. With the ones that we have we can start the cycle tomorrow (Sunday.) This delay will at least mean that I won't be starting cycle 3 on Christmas Day.
22 November - Vertigo
I'm nearly at the end of the first chemotherapy cycle. It has been about 3 weeks since I had temozolomide. The unpleasant taste and chalky mouth have almost gone. The hand tremor and feeling dizzy and light headed remain, though. My hands shake enough to make using tools almost impossible but not so much that I can't lift a mug of tea without spilling it. The tablets prescribed by the GP to stop the shaking made no difference whatsoever.
This afternoon I walked into town with Olga and we went into a showroom to look at something. The showroom had some short but steep stairs between levels and no hand rail. Olga had gone on ahead. I just had the walking stick. I went up one stair and felt vertigo, like I was losing my balance. I really thought I might fall down. I called Olga and she took my free hand and we negotiated the stairs.
After that I made sure that I always had three points of contact when negotiating stairs. My knees were shaking like crazy. I was also soaked in sweat by the time we left. I've always been rather sweaty but now I need a shower and a change of clothing after any trip out, which is a bit of an inconvenience.
Looks like it might be a while before I'm able to tackle any Wainwright summits. :( But I am very glad that I have such a devoted wife in Olga who doesn't complain about having to be a wet nurse for her increasingly useless husband!
On Friday afternoon we have an appointment with the consultant in Carlisle and a blood test to see whether I am OK to start the second chemo cycle - an even bigger dose of temozolomide. So I have that to look forward to!
This afternoon I walked into town with Olga and we went into a showroom to look at something. The showroom had some short but steep stairs between levels and no hand rail. Olga had gone on ahead. I just had the walking stick. I went up one stair and felt vertigo, like I was losing my balance. I really thought I might fall down. I called Olga and she took my free hand and we negotiated the stairs.
After that I made sure that I always had three points of contact when negotiating stairs. My knees were shaking like crazy. I was also soaked in sweat by the time we left. I've always been rather sweaty but now I need a shower and a change of clothing after any trip out, which is a bit of an inconvenience.
Looks like it might be a while before I'm able to tackle any Wainwright summits. :( But I am very glad that I have such a devoted wife in Olga who doesn't complain about having to be a wet nurse for her increasingly useless husband!
On Friday afternoon we have an appointment with the consultant in Carlisle and a blood test to see whether I am OK to start the second chemo cycle - an even bigger dose of temozolomide. So I have that to look forward to!
9 November - Vision and balance problems
Nothing new to report. Physically I'm in pretty good shape - my appetite is good and I can walk reasonable distances.
But I can only go out of the house if escorted by Olga holding my hand - not just metaphorically but literally. I continue to have problems with vision and difficulties with balance if I have to change direction to avoid other people. Without Olga's attention I would probably fall over or walk under the wheels of a car while trying to cross the road. I'm least conscious of these issues when I'm sitting down, at home. It has made me reluctant to go for walks which I really need.
I'm fed up with the feeling that this is all just a bad dream.
But I can only go out of the house if escorted by Olga holding my hand - not just metaphorically but literally. I continue to have problems with vision and difficulties with balance if I have to change direction to avoid other people. Without Olga's attention I would probably fall over or walk under the wheels of a car while trying to cross the road. I'm least conscious of these issues when I'm sitting down, at home. It has made me reluctant to go for walks which I really need.
I'm fed up with the feeling that this is all just a bad dream.
1 November - First chemotherapy cycle over
I survived the first session of intensive chemotherapy - five days at twice the earlier dose - without experiencing any particularly bad side effects. Apart from one. I have the worst constipation I have ever had in my life!
Constipation is one of the more common side effects of temozolmide. We had been given laxative tablets to counteract this during the radiotherapy/chemotherapy but I stopped taking them as I didn't appear to need them. It seems that I do now!
Olga went to the pharmacy to try to get some industrial strength laxatives and came back with something called Movicol. Hopefully that will do the trick.
Now I will have 23 days of "rest" (no chemotherapy) before starting the next cycle.
Constipation is one of the more common side effects of temozolmide. We had been given laxative tablets to counteract this during the radiotherapy/chemotherapy but I stopped taking them as I didn't appear to need them. It seems that I do now!
Olga went to the pharmacy to try to get some industrial strength laxatives and came back with something called Movicol. Hopefully that will do the trick.
Now I will have 23 days of "rest" (no chemotherapy) before starting the next cycle.
27 October - Retired on medical grounds
I am now officially retired. Today I received a letter from the pension fund of a former employer to say that they have agreed to bring forward the date when I can receive the deferred benefits on medical grounds. It isn't a huge amount, since it is only a part pension: I left their employment nearly 20 years ago. But it is a whole lot better than nothing. Now I just have to prove the doctors wrong and beat the tumour so I can receive this pension for as long as possible!
26 October - Starting intensive chemotherapy
My blood test results have given the all clear to begin the first of six intensive chemotherapy cycles tomorrow. Just when I'm starting to lose the foul taste in my mouth and able to enjoy food again! I just have to keep telling myself it's for the better.
At least, I hope it is. There has been no improvement in my hand tremor. But the only major effect of that is that electronic constructional work and other activities which require the use of tools and a steady hand is next to impossible. Oh, and I tend to hit the wrong keys on the computer keyboard more often than previously. This I could (reluctantly) put up with.
But the most debilitating symptom is the fuzziness in my head, the feeling I'm not really there, that I'm looking at the world through a window that makes everything look a bit out of focus, that it's unreal, just a bad dream. It's similar to how I was feeling before I was even diagnosed with a brain tumour. Only worse. I have started to worry that despite the treatment I have had so far the tumour is fighting back, that this is as good as it's going to get. Morale is at a low point at the moment.
At least, I hope it is. There has been no improvement in my hand tremor. But the only major effect of that is that electronic constructional work and other activities which require the use of tools and a steady hand is next to impossible. Oh, and I tend to hit the wrong keys on the computer keyboard more often than previously. This I could (reluctantly) put up with.
But the most debilitating symptom is the fuzziness in my head, the feeling I'm not really there, that I'm looking at the world through a window that makes everything look a bit out of focus, that it's unreal, just a bad dream. It's similar to how I was feeling before I was even diagnosed with a brain tumour. Only worse. I have started to worry that despite the treatment I have had so far the tumour is fighting back, that this is as good as it's going to get. Morale is at a low point at the moment.
20 October - GP appointment
This morning we had an appointment with our GP about the problem with my hands shaking. She said that it is hard to be sure given the treatments I am having but the tremor and the feeling dizzy could both be caused by the clomipramine. She has doubled the dose of procyclidine which was supposed to stop the shaking. But it may come to the point where I have to choose between steady hands or clomipramine.
As I'm not allowed to drive anyway and don't have to hold down a job the dizziness and tremors are mostly just an inconvenience compared to the extra time that we believe the clomipramine will buy me. It would certainly be nice to have a clear head, be steady on my feet and not have shaking hands, but the main impact of these symptoms is to make it impossible for me to undertake any electronic constructional work for my ham radio hobby. I haven't tried, but I guess I'd find sending morse code difficult too.
I've noticed that I hit the wrong keys a lot more often when using the computer keyboard. The clomipramine is also the reason I have to avoid alcohol - because I feel a bit drunk even when I am sober!
As I'm not allowed to drive anyway and don't have to hold down a job the dizziness and tremors are mostly just an inconvenience compared to the extra time that we believe the clomipramine will buy me. It would certainly be nice to have a clear head, be steady on my feet and not have shaking hands, but the main impact of these symptoms is to make it impossible for me to undertake any electronic constructional work for my ham radio hobby. I haven't tried, but I guess I'd find sending morse code difficult too.
I've noticed that I hit the wrong keys a lot more often when using the computer keyboard. The clomipramine is also the reason I have to avoid alcohol - because I feel a bit drunk even when I am sober!
18 October - Flu jabs
This morning Olga and I went to the GP surgery to get our flu jabs.
Then another trip to Carlisle for an appointment with the consultant. Didn't learn anything new, just a re-statement of the next phase of treatment.
I must have a blood test at the GP surgery next Monday, then we will phone Carlisle on Wednesday to check the results and ensure that my blood count is good enough to start the treatment. If I'm OK then I will start the first of six chemotherapy cycles on Thursday 27 October. I will take temozolomide at double the previous dose for five days, then 23 days I will take nothing. The idea is to take the cancer cells by surprise: If I took a continuous steady dose of temozolomide then they start to build up a resistance to it.
The one thing that wasn't mentioned is when I have another CT or MRI brain scan. I presume that if one was necessary they would do it. But it would be nice to know how effective the treatment has been so far at beating back the tumour.
Then another trip to Carlisle for an appointment with the consultant. Didn't learn anything new, just a re-statement of the next phase of treatment.
I must have a blood test at the GP surgery next Monday, then we will phone Carlisle on Wednesday to check the results and ensure that my blood count is good enough to start the treatment. If I'm OK then I will start the first of six chemotherapy cycles on Thursday 27 October. I will take temozolomide at double the previous dose for five days, then 23 days I will take nothing. The idea is to take the cancer cells by surprise: If I took a continuous steady dose of temozolomide then they start to build up a resistance to it.
The one thing that wasn't mentioned is when I have another CT or MRI brain scan. I presume that if one was necessary they would do it. But it would be nice to know how effective the treatment has been so far at beating back the tumour.
16 October - Frustration
Olga and I went for a walk this afternoon to Brigham and back. It is probably the furthest I have walked since I was in hospital. It was also very nearly our last walk, ever. As we approached the T junction with the A66 we had to jump for our lives as a white van turning in to the lane almost ran on to the verge due to the driver steering with his left hand and talking into a mobile phone with the other. It was a near miss and we were both quite shaken.
Olga had a bit of a job persuading me to go for this walk because I couldn't be bothered. To be honest I've been a bit depressed the last few days. I think the main reason is the lack of improvement in the state of my head. I've described it before as feeling a bit dizzy, like I've had too much to drink. But it's a bit stranger than that. Everything seems a bit fuzzy and unreal, like I'm viewing the world through a glass window. I'm not as conscious of this feeling of unreality if I sit at home and read or listen to music or watch TV or just doze, so that's what I'm inclined to do.
The choices of where to walk starting from here are a bit limited. I'm getting fed up with walking round the block. It's so frustrating not having a car because there are so many places to go and things we could do if we could just drive a few miles before setting off. If we have to run the gauntlet of drunk drivers using mobile phones for daring to venture along some of the country lanes on foot then perhaps staying at home is the best idea after all.
Olga had a bit of a job persuading me to go for this walk because I couldn't be bothered. To be honest I've been a bit depressed the last few days. I think the main reason is the lack of improvement in the state of my head. I've described it before as feeling a bit dizzy, like I've had too much to drink. But it's a bit stranger than that. Everything seems a bit fuzzy and unreal, like I'm viewing the world through a glass window. I'm not as conscious of this feeling of unreality if I sit at home and read or listen to music or watch TV or just doze, so that's what I'm inclined to do.
The choices of where to walk starting from here are a bit limited. I'm getting fed up with walking round the block. It's so frustrating not having a car because there are so many places to go and things we could do if we could just drive a few miles before setting off. If we have to run the gauntlet of drunk drivers using mobile phones for daring to venture along some of the country lanes on foot then perhaps staying at home is the best idea after all.
14 October - A gift from America
My short term memory must be worse than I thought. The postman brought a book from Amazon that I had no recollection of ordering. When I opened the package I found it was a copy of "Living with a Brain Tumour" that had been sent as a gift by one of my American readers. Thanks, Michael! It is a very good book and answers a lot of questions.
Two weeks on from the end of radiotherapy and I still have the dizziness and the hand tremor. The dizziness is the worst symptom: it makes me a bit unsteady on my feet and it makes me feel a bit detached from the world, like it's a dream and not real. But this could still be an effect of the radiotherapy and may last for several weeks, according to the book. I had been hoping for a quick return to how I felt a couple of months ago before the treatment started. I guess I will just have to be patient!
Two weeks on from the end of radiotherapy and I still have the dizziness and the hand tremor. The dizziness is the worst symptom: it makes me a bit unsteady on my feet and it makes me feel a bit detached from the world, like it's a dream and not real. But this could still be an effect of the radiotherapy and may last for several weeks, according to the book. I had been hoping for a quick return to how I felt a couple of months ago before the treatment started. I guess I will just have to be patient!
8 October - Still shaking
I've been taking the new tablets, Procyclidine, prescribed by the GP to stop my hands shaking, for 4 days now. It doesn't seem to have made any difference. Today I wired a 13 Amp mains plug on to a piece of equipment. I managed it in the end, but I found it quite difficult to secure the wire to the pins because the blade of the screwdriver was vibrating by a few millimetres. I don't think I could attempt any electronic construction work at the moment.
When I go back to see the GP I will mention this, of course, in case there is an alternative anti-tremor medication. One of my readers mentioned beta blockers, which I don't think Procyclidine is.
Still, if it's a choice between taking clomipramine and living with a hand tremor or not taking it and letting the tumour grow back again unimpeded after my chemotherapy is over, the decision is - pardon the pun - a no-brainer.
When I go back to see the GP I will mention this, of course, in case there is an alternative anti-tremor medication. One of my readers mentioned beta blockers, which I don't think Procyclidine is.
Still, if it's a choice between taking clomipramine and living with a hand tremor or not taking it and letting the tumour grow back again unimpeded after my chemotherapy is over, the decision is - pardon the pun - a no-brainer.
4 October - Jelly legs and hand shake
Four days since I finished radiotherapy and chemotherapy but I haven't noticed much improvement yet in how I'm feeling. Still feel a bit dizzy, my vision is sometimes out of focus, my legs feel like jelly because my knees tremble, and my hands shake.
Visited the GP surgery as we had to sort out repeat prescriptions for some of my medications. Mentioned these symptoms and she thought it might be the clomipramine, though it is too soon after all the other treatment to be sure what is to blame. In case it is the clomipramine she prescribed another tablet to take that should stop the trembling. So fingers crossed that it will do the trick.
My former employer has already written to my GP regarding whether I would be eligible for early retirement on medical grounds so hopefully I will find out about that soon.
Visited the GP surgery as we had to sort out repeat prescriptions for some of my medications. Mentioned these symptoms and she thought it might be the clomipramine, though it is too soon after all the other treatment to be sure what is to blame. In case it is the clomipramine she prescribed another tablet to take that should stop the trembling. So fingers crossed that it will do the trick.
My former employer has already written to my GP regarding whether I would be eligible for early retirement on medical grounds so hopefully I will find out about that soon.
29 September - Finished radiotherapy!
I've just got back from my final radiotherapy session! As usual, feeling a bit dizzy and shaky. But I will now have three or four weeks with no treatment (except the clomipramine.) Hopefully during that time I will start getting back to normal.
My next appointment to see the consultant is on 18 October. He will then initiate the next stage of the treatment which will be six 4-weekly sessions of intensive chemotherapy. (The temazolomide I have been taking now has been a lower dose to assist the radiotherapy.) I've been lucky so far that I have not experienced any bad side effects from the chemotherapy. I haven't felt great, but it has been tolerable. I hope I'll be as fortunate when I start on the higher dose.
My next appointment to see the consultant is on 18 October. He will then initiate the next stage of the treatment which will be six 4-weekly sessions of intensive chemotherapy. (The temazolomide I have been taking now has been a lower dose to assist the radiotherapy.) I've been lucky so far that I have not experienced any bad side effects from the chemotherapy. I haven't felt great, but it has been tolerable. I hope I'll be as fortunate when I start on the higher dose.
19 September - Still rather dizzy
Still in the land of the living. Nothing much has changed since last week's post. The dizziness and fuzzy vision is if anything a bit worse. I'm less tired, but the other symptoms make me feel less like doing anything. At least I'm taking it easy.
Only 8 more sessions of radiotherapy to go, after which I'll be taking a break from the chemotherapy too. So I'm hoping I'll feel some improvement after that.
Completed a consent form giving the administrators of my pension from a former employment permission to contact my doctors with a view to my receiving the pension early. I'm 58 now and had I still been in that job would have retired at 60 but in the circumstances I suspect I would have been eligible for early retirement on medical grounds. Of course, I'm hoping to beat the bugger into submission enough to see my 60th birthday but the prognosis for this type of brain tumour says this is unlikely so I can't discount the possibility.
Only 8 more sessions of radiotherapy to go, after which I'll be taking a break from the chemotherapy too. So I'm hoping I'll feel some improvement after that.
Completed a consent form giving the administrators of my pension from a former employment permission to contact my doctors with a view to my receiving the pension early. I'm 58 now and had I still been in that job would have retired at 60 but in the circumstances I suspect I would have been eligible for early retirement on medical grounds. Of course, I'm hoping to beat the bugger into submission enough to see my 60th birthday but the prognosis for this type of brain tumour says this is unlikely so I can't discount the possibility.
11 September - Dizziness and hand tremors
A brief update. Feeling less tired and apathetic than a week ago. However the dizziness and hand tremors are worse. Olga noticed my hands shaking at breakfast this morning and was concerned about it.
I am up to the full 150mg dose of Clomipramine now, so we are hitting the tumour full blast with all the weapons at our disposal. We suspect that the shaking hands may be one of the side effects of the clomipramine, but it may be connected with the other treatments. Given time the body may adapt to it.
The only inconvenience is that I can't use the soldering iron, something I haven't felt like doing in the last couple of weeks anyway. If that's the sacrifice I have to make to gain some extra time in the land of the living then I'll just have to put up with it.
I am up to the full 150mg dose of Clomipramine now, so we are hitting the tumour full blast with all the weapons at our disposal. We suspect that the shaking hands may be one of the side effects of the clomipramine, but it may be connected with the other treatments. Given time the body may adapt to it.
The only inconvenience is that I can't use the soldering iron, something I haven't felt like doing in the last couple of weeks anyway. If that's the sacrifice I have to make to gain some extra time in the land of the living then I'll just have to put up with it.
4 September - Feeling miserable
No posts for a while, the reason being nothing much has changed. I'm still feeling pretty miserable.
Days follow the same pattern: wake, eat, take tablets, go for radiotherapy, eat, doze, eat, take tablets, sleep. Except at the weekend when there is a break from the radiotherapy. If I was feeling a bit of a fraud in mid-August, I don't now. The blurry vision, the slight dizziness, the trembling hands and the jelly legs are all back. Even if I had the will to do so I couldn't accomplish the things I was doing before the treatment started.
The doctors tell me this is normal and just the effects of the treatment. So I guess this is how it is going to be for the next three and a half weeks. After that, the radiotherapy stops and I get a break from the chemo. Then, I hope, I will start to see some improvement.
I think it's going to be a long three and a half weeks.
Days follow the same pattern: wake, eat, take tablets, go for radiotherapy, eat, doze, eat, take tablets, sleep. Except at the weekend when there is a break from the radiotherapy. If I was feeling a bit of a fraud in mid-August, I don't now. The blurry vision, the slight dizziness, the trembling hands and the jelly legs are all back. Even if I had the will to do so I couldn't accomplish the things I was doing before the treatment started.
The doctors tell me this is normal and just the effects of the treatment. So I guess this is how it is going to be for the next three and a half weeks. After that, the radiotherapy stops and I get a break from the chemo. Then, I hope, I will start to see some improvement.
I think it's going to be a long three and a half weeks.
29 August - Tired and lethargic
This weekend has been pretty grim. I feel so tired and lethargic I can't take an interest in anything. Just slumped in a chair dozing most of the time. Forced myself to take a bit of exercise as I know it will do me good, but it is an effort of will, not like a week ago when I felt I could almost climb a mountain. Even my appetite is not what it was, not helped by my mouth feeling like it is coated in some foul-tasting powder.
I guess this is just the effect of all the treatment, so I suppose this is how it is going to be for the next few weeks. Hopefully it gets better after that.
I guess this is just the effect of all the treatment, so I suppose this is how it is going to be for the next few weeks. Hopefully it gets better after that.
27 August - Very drowsy
On advice from the GP, I took another 25mg Clomipramine with my evening meal last night. It takes a while for the body to adapt to the drug, which is why the dosage has to be built up slowly.
I'm glad to say I had no unpleasant experiences this time and Olga says that I slept well. But I am indescribably drowsy this morning.
I'm glad to say I had no unpleasant experiences this time and Olga says that I slept well. But I am indescribably drowsy this morning.
26 August - Clomipramine side effects?
I hope our happiness at getting the clomipramine will not turn out to be short-lived.
I slept reasonably well but had a bit of a headache in the middle of the night. Took paracetamol. Early in the morning around 5.30-6am I awoke with my mucles feeling a bit tense, especially across my stomach, and feeling slightly sick. After a while I got up, or rather sat up, and felt very woozy indeed. I was lolling around like a very drunk person. After a while the feeling passed. I lay down and rested with some deep breathing until I heard Olga getting up. She checked my blood pressure with the machine we have got and said it was normal but a bit lower than usual for me.
I didn't have much appetite for breakfast this morning but began to feel better after tea, coffee and porridge. Right now (9am) I'm feeling pretty much back to how I have been feeling on other mornings. But at the time it was not a pleasant experience.
We don't know if it was the clomipramine that caused this - after all, I had only taken one tablet before going to bed the night before - but it will be easy enough to check. If you Google "clomipramine blood pressure" you will find that clomipramine can cause low blood pressure and some people may be hypersensitive to it and experience low blood pressure shortly after taking it. I don't know if I am one of those people, but one time a few years ago about half an hour after my GP gave me an injection for something else, I blacked out in a concert in Cockermouth and ended up in Whitehaven hospital after a fast ride in an ambulance. No-one found an explanation for why it happened. So perhaps I am hypersensitive to certain drugs.
It would be rather a blow if, having suffered almost none of the side effects of the treatment I have been receiving so far, I am unable to take this Clomipramine on which we had pinned our hopes. We will just have to wait and then try it again in a couple of days to see if what I felt this morning was just coincidence, a one-off.
Watch this space.
I slept reasonably well but had a bit of a headache in the middle of the night. Took paracetamol. Early in the morning around 5.30-6am I awoke with my mucles feeling a bit tense, especially across my stomach, and feeling slightly sick. After a while I got up, or rather sat up, and felt very woozy indeed. I was lolling around like a very drunk person. After a while the feeling passed. I lay down and rested with some deep breathing until I heard Olga getting up. She checked my blood pressure with the machine we have got and said it was normal but a bit lower than usual for me.
I didn't have much appetite for breakfast this morning but began to feel better after tea, coffee and porridge. Right now (9am) I'm feeling pretty much back to how I have been feeling on other mornings. But at the time it was not a pleasant experience.
We don't know if it was the clomipramine that caused this - after all, I had only taken one tablet before going to bed the night before - but it will be easy enough to check. If you Google "clomipramine blood pressure" you will find that clomipramine can cause low blood pressure and some people may be hypersensitive to it and experience low blood pressure shortly after taking it. I don't know if I am one of those people, but one time a few years ago about half an hour after my GP gave me an injection for something else, I blacked out in a concert in Cockermouth and ended up in Whitehaven hospital after a fast ride in an ambulance. No-one found an explanation for why it happened. So perhaps I am hypersensitive to certain drugs.
It would be rather a blow if, having suffered almost none of the side effects of the treatment I have been receiving so far, I am unable to take this Clomipramine on which we had pinned our hopes. We will just have to wait and then try it again in a couple of days to see if what I felt this morning was just coincidence, a one-off.
Watch this space.
25 August - Starting clomipramine
We have Clomipramine!
Olga managed to get us an appointment this afternoon with her GP - a woman doctor, whose first comment after we explained what we wanted was "No problem". She also said that if she was in the same situation as me she would do the same thing. She could not have been more helpful. (She also said that she couldn't see why my consultant at Carlisle couldn't have prescribed the Clomipramine in the first place as it is an approved drug and as it is also a cheap one "it would not break the hospital's budget.")
At my treatment session today one of the radiologists showed me a scan of my brain and pointed out the tumour and the ways they were beaming X-rays at it. It was only an A4 print-out and not as clear as it looks on the computer, she said. Still, it looked quite big to me. If that's what is still there, what did the surgeon at Newcastle take out? I hope the next time I see a picture of it, it will be smaller.
Feeling pretty tired now. The Clomipramine is supposed to make you drowsy as well so I will take the first tablet before I go to bed tonight. We have to build up the dose from 25mg a day to 150mg a day in steps of three days, increasing 25mg at a time. At least I should sleep well!
Olga managed to get us an appointment this afternoon with her GP - a woman doctor, whose first comment after we explained what we wanted was "No problem". She also said that if she was in the same situation as me she would do the same thing. She could not have been more helpful. (She also said that she couldn't see why my consultant at Carlisle couldn't have prescribed the Clomipramine in the first place as it is an approved drug and as it is also a cheap one "it would not break the hospital's budget.")
At my treatment session today one of the radiologists showed me a scan of my brain and pointed out the tumour and the ways they were beaming X-rays at it. It was only an A4 print-out and not as clear as it looks on the computer, she said. Still, it looked quite big to me. If that's what is still there, what did the surgeon at Newcastle take out? I hope the next time I see a picture of it, it will be smaller.
Feeling pretty tired now. The Clomipramine is supposed to make you drowsy as well so I will take the first tablet before I go to bed tonight. We have to build up the dose from 25mg a day to 150mg a day in steps of three days, increasing 25mg at a time. At least I should sleep well!
24 August - Disappointed
Back from another session of radiotherapy feeling rather disappointed.
After I first found out about Clomipramine I asked one of the radiologists if we could see the consultant oncologist to discuss the possibility of taking it. I even provided some information, in the form of a printout of what I had found on the internet, so they and the consultant knew what I was talking about.
I heard back from the radiologists that the consultant "could see no reason why I shouldn't take Clomipramine" and we were promised an appointment with him today to discuss it. This we had.
I had really expected to walk away from that appointment with a prescription for Clomipramine together with a recommended dose to take as a monitored part of my treatment programme. But I was told that, though he thought it would be beneficial for my treatment, he could not prescribe it as treatment for a brain tumour because it had not been approved for that purpose by NICE.
Instead, he told us I should go to my GP and get it prescribed as an antidepressant. This was rather disappointing, since first of all the GP may be unwilling to prescribe it either, and secondly because the dose of the medicine prescribed for depression may not be the correct dose for treatment of brain tumours. When we asked if he could provide a letter for the GP explaining why we wanted a prescription for this drug, he handed me a photocopy of the printout I had made from the internet to give to the radiologist!
When I asked about dosage, the consultant suggested that we used the internet to try to find out by contacting the various people at universities in the UK that had done research into using Clomipramine to treat brain tumours. But I am already feeling out of my depth. I may be able to find out solutions to computer or ham radio related problems but reading medical research papers - or even knowing where to find them in the first place - is outside my experience. Besides, I'm not sure that doctors or researchers will even be willing to provide that information to lay members of the public.
This is harder than I thought it was going to be. I really had expected more help from the medical profession. What with the tiredness caused by the radiotherapy, at the moment I don't even know where to start. I could do without having to deal with doctors passing the buck.
After I first found out about Clomipramine I asked one of the radiologists if we could see the consultant oncologist to discuss the possibility of taking it. I even provided some information, in the form of a printout of what I had found on the internet, so they and the consultant knew what I was talking about.
I heard back from the radiologists that the consultant "could see no reason why I shouldn't take Clomipramine" and we were promised an appointment with him today to discuss it. This we had.
I had really expected to walk away from that appointment with a prescription for Clomipramine together with a recommended dose to take as a monitored part of my treatment programme. But I was told that, though he thought it would be beneficial for my treatment, he could not prescribe it as treatment for a brain tumour because it had not been approved for that purpose by NICE.
Instead, he told us I should go to my GP and get it prescribed as an antidepressant. This was rather disappointing, since first of all the GP may be unwilling to prescribe it either, and secondly because the dose of the medicine prescribed for depression may not be the correct dose for treatment of brain tumours. When we asked if he could provide a letter for the GP explaining why we wanted a prescription for this drug, he handed me a photocopy of the printout I had made from the internet to give to the radiologist!
When I asked about dosage, the consultant suggested that we used the internet to try to find out by contacting the various people at universities in the UK that had done research into using Clomipramine to treat brain tumours. But I am already feeling out of my depth. I may be able to find out solutions to computer or ham radio related problems but reading medical research papers - or even knowing where to find them in the first place - is outside my experience. Besides, I'm not sure that doctors or researchers will even be willing to provide that information to lay members of the public.
This is harder than I thought it was going to be. I really had expected more help from the medical profession. What with the tiredness caused by the radiotherapy, at the moment I don't even know where to start. I could do without having to deal with doctors passing the buck.
22 August - Outing to Keswick
Feeling not quite as great as I was a week or so ago. I'm still not feeling any major effects of the chemotherapy apart from the constipation, so I'm now taking the prescribed laxatives as well as eating prunes and beetroot. But I'm feeling more tired and lethargic than I did before treatment started. I'm taking it easier on the exercise bike. And where I had a lot of enthusiasm for blogging and doing little hobby projects before, now I often can't be bothered. The radiologists said that this is normal.
Saturday's outing to Keswick was a mixed success. We got what we went for and walked further along the lake shore than on our previous visit. But I had not thought of, and failed to take into account, the fact that the chemo tablets still need to be taken on an empty stomach and I should not eat for a further two hours. By the time we reached the furthest point from the town I had not eaten anything for 3 hours and started to lose energy. I felt cold and sweaty at the same time and was worried about catching a chill. After I had something to eat in the cafe at the Theatre by the Lake I soon felt a lot better. But the experience was a reminder that even on the days when I am not going for treatment my activities are still limited.
Just a reminder: the BBC 4 radio programme about Clomipramine: Treating Tumours: Old drug, New tricks is at 8pm tonight.
Saturday's outing to Keswick was a mixed success. We got what we went for and walked further along the lake shore than on our previous visit. But I had not thought of, and failed to take into account, the fact that the chemo tablets still need to be taken on an empty stomach and I should not eat for a further two hours. By the time we reached the furthest point from the town I had not eaten anything for 3 hours and started to lose energy. I felt cold and sweaty at the same time and was worried about catching a chill. After I had something to eat in the cafe at the Theatre by the Lake I soon felt a lot better. But the experience was a reminder that even on the days when I am not going for treatment my activities are still limited.
Just a reminder: the BBC 4 radio programme about Clomipramine: Treating Tumours: Old drug, New tricks is at 8pm tonight.
19 August - Headache
Had a headache last night. It was just a nagging one when I went to bed but got worse during the night and paracetamol didn't help it. It soon went after I got up and had breakfast, though.
Still no nausea from the temazolomide and I only took one of the two anti-sickness tablets. Tomorrow, since there is no radiotherapy over the weekend, I won't take the anti-sickness tablets at all and see how I get on. I don't believe in taking drugs just for the sake of it. I'm taking enough medications already.
Went for the second dose of radiotherapy this afternoon. As before it was quick and painless. Feeling a little bit tired and lethargic on my return home, but that might be partly due to the lack of sleep caused by the headache. Today's hospital voluntary car service driver had been through radiotherapy and said that the tiredness only really kicked in after the first two weeks of it.
Tomorrow Olga and I will probably take the bus to Keswick for the day. It may be the last time I feel energetic enough to go out somewhere until this course of radiotherapy is over.
Still no nausea from the temazolomide and I only took one of the two anti-sickness tablets. Tomorrow, since there is no radiotherapy over the weekend, I won't take the anti-sickness tablets at all and see how I get on. I don't believe in taking drugs just for the sake of it. I'm taking enough medications already.
Went for the second dose of radiotherapy this afternoon. As before it was quick and painless. Feeling a little bit tired and lethargic on my return home, but that might be partly due to the lack of sleep caused by the headache. Today's hospital voluntary car service driver had been through radiotherapy and said that the tiredness only really kicked in after the first two weeks of it.
Tomorrow Olga and I will probably take the bus to Keswick for the day. It may be the last time I feel energetic enough to go out somewhere until this course of radiotherapy is over.
18 August - Clomipramine my best hope?
Whilst waiting for the car to arrive to take me to Carlisle I was leafing through the Radio Times and noticed something that got my interest. On Tuesday 23 August at 8pm on BBC Radio 4 there will be a programme with the title: Treating Tumours: Old Drug, New Tricks.
According to the programme synopsis: Ten years ago, researchers discovered that the out-of-fashion antidepressant drug clomipramine has apparently remarkable anti-tumour properties. What's more the treatment costs pennies, not hundreds or thousands of pounds. Yet these scientists have struggled to find anyone to back their research.
Obviously I haven't heard the programme yet, but a quick bit of Googling on my smartphone turned up enough information to get quite excited. The Canceractive web page on using Clomipramine to treat brain tumours suggests this drug has very positive benefits in treating the aggressive glioblastoma multiforme tumour that the doctors claim I have. Of all the alternative therapies I've read about or people have told me about, Clomipramine seems to offer the best chance of beating the tumour and extending my life.
Whilst I was at Carlisle today I mentioned the Radio 4 programme to the radiologists, who all duly made a note of it. I then asked if I could see the consultant doctor to discuss the possibility of trying this drug. So we'll see what he says.
According to the programme synopsis: Ten years ago, researchers discovered that the out-of-fashion antidepressant drug clomipramine has apparently remarkable anti-tumour properties. What's more the treatment costs pennies, not hundreds or thousands of pounds. Yet these scientists have struggled to find anyone to back their research.
Obviously I haven't heard the programme yet, but a quick bit of Googling on my smartphone turned up enough information to get quite excited. The Canceractive web page on using Clomipramine to treat brain tumours suggests this drug has very positive benefits in treating the aggressive glioblastoma multiforme tumour that the doctors claim I have. Of all the alternative therapies I've read about or people have told me about, Clomipramine seems to offer the best chance of beating the tumour and extending my life.
- It kills brain tumour cells whilst sparing normal brain tissue.
- It is an old drug so a lot is already known about its side effects: which are mostly minor - sleepiness and a dry mouth, though there is an increased risk of seizures.
- It is compatible with the Temozolomide chemotherapy drug that I have just started taking and can increase its effectiveness.
- Patients who have taken Clomipramine have survived for five years whereas the usual survival rate for people with glioblastoma multiforme is only a few months.
Whilst I was at Carlisle today I mentioned the Radio 4 programme to the radiologists, who all duly made a note of it. I then asked if I could see the consultant doctor to discuss the possibility of trying this drug. So we'll see what he says.
18 August - Starting treatment
First day of actual treatment. Nothing much to report.
Took the temozolomide tablets. Didn't feel nauseous.
Had the first dose of radiotherapy. Didn't feel any pain. Lay there on the bed, under the mask, while the X-ray machine whirred around my head. Nearly dozed off.
The worst thing about it was having to miss lunch to maintain an empty stomach two hours either side of taking the temozolomide.
Took the temozolomide tablets. Didn't feel nauseous.
Had the first dose of radiotherapy. Didn't feel any pain. Lay there on the bed, under the mask, while the X-ray machine whirred around my head. Nearly dozed off.
The worst thing about it was having to miss lunch to maintain an empty stomach two hours either side of taking the temozolomide.
16 August - Radiotherapy preparation
Well, the holiday is over! Treatment proper starts in two days, on Thursday.
This morning's appointment started with a blood test to check that my blood levels are good enough to start the treatment. They will do this every week during the treatment. I was told my blood was "very good."
Then to the radiotherapy simulator room where I spent half an hour or so pinned to the bed under my face mask. Two technicians (or whatever they are called) made marks on the mask and conversed with one another in an unintelligible jargon. I'm sure the word "soup" was mentioned several times. Whether or not this was a reference to the contents of my head was unclear to me.
Meanwhile Olga was despatched to the hospital pharmacy with a prescription and came back 50 minutes later with a large bag of medicine. These included the temozolomide (chemotherapy) which I must take on an empty stomach one hour before the radiotherapy begins. To get the exact dose for my body I will have to take five separate capsules or tablets of different strengths. There is also an anti-sickness tablet which is supposed to stop me vomiting the temozolomide back up again. This on top of the steroid medication that I am already taking and the capsule that protects my stomach from that. In case the chemotherapy gives me constipation they have also prescribed a laxative that I can take if needed. Personally I'm putting my faith in bran flakes, beetroot salad and Californian prunes.
The radiotherapy will go on five days a week for six weeks. After that there will be a break, followed by a heavy course of chemotherapy only. Then another break, then more chemotherapy - about six months' treatment in total. By then, they will either have killed the cancer or me!
This all depends on how I respond to the treatment, of course, but because I'm feeling so fit at the moment I think I'm giving it the best possible chance of succeeding. Part of me is sorry that the period of feeling fit and almost back to normal is likely to be over for a while. Chances are I won't be taking to the streets on my bike or building any more electronic kits for a while. Olga and I will have one last dinner with wine this evening. I haven't actually been told you must lay off alcohol during chemotherapy, but with all the drugs I will be ingesting over the next six months abstinence probably won't be a bad idea.
No pain, no gain, as they say. Perhaps the effects of the treatment won't be so bad for me. But if that's what it takes to beat the bugger, I'm as ready to take it now as I'll ever be.
This morning's appointment started with a blood test to check that my blood levels are good enough to start the treatment. They will do this every week during the treatment. I was told my blood was "very good."
Then to the radiotherapy simulator room where I spent half an hour or so pinned to the bed under my face mask. Two technicians (or whatever they are called) made marks on the mask and conversed with one another in an unintelligible jargon. I'm sure the word "soup" was mentioned several times. Whether or not this was a reference to the contents of my head was unclear to me.
Meanwhile Olga was despatched to the hospital pharmacy with a prescription and came back 50 minutes later with a large bag of medicine. These included the temozolomide (chemotherapy) which I must take on an empty stomach one hour before the radiotherapy begins. To get the exact dose for my body I will have to take five separate capsules or tablets of different strengths. There is also an anti-sickness tablet which is supposed to stop me vomiting the temozolomide back up again. This on top of the steroid medication that I am already taking and the capsule that protects my stomach from that. In case the chemotherapy gives me constipation they have also prescribed a laxative that I can take if needed. Personally I'm putting my faith in bran flakes, beetroot salad and Californian prunes.
The radiotherapy will go on five days a week for six weeks. After that there will be a break, followed by a heavy course of chemotherapy only. Then another break, then more chemotherapy - about six months' treatment in total. By then, they will either have killed the cancer or me!
This all depends on how I respond to the treatment, of course, but because I'm feeling so fit at the moment I think I'm giving it the best possible chance of succeeding. Part of me is sorry that the period of feeling fit and almost back to normal is likely to be over for a while. Chances are I won't be taking to the streets on my bike or building any more electronic kits for a while. Olga and I will have one last dinner with wine this evening. I haven't actually been told you must lay off alcohol during chemotherapy, but with all the drugs I will be ingesting over the next six months abstinence probably won't be a bad idea.
No pain, no gain, as they say. Perhaps the effects of the treatment won't be so bad for me. But if that's what it takes to beat the bugger, I'm as ready to take it now as I'll ever be.
15 August - A bike ride
Today I rode my bike for the first time. Not the exercise bike, the folding pedal bike that has been zipped up in its bag under the bench in the garage for the last two or three years.
I was a bit wobbly - perhaps not surprising as apart from everything else I hadn't ridden the bike for a long time. And I didn't go far - just down to the bottom of the cul de sac and back again. But I managed to ride it without falling off, which I hadn't been sure I could do. So that's a bit more progress towards getting back to normal.
I was a bit wobbly - perhaps not surprising as apart from everything else I hadn't ridden the bike for a long time. And I didn't go far - just down to the bottom of the cul de sac and back again. But I managed to ride it without falling off, which I hadn't been sure I could do. So that's a bit more progress towards getting back to normal.
14 August - Full of energy
I'm starting to feel like a bit of a fraud. This afternoon we went for a walk around town. I haven't felt like I had so much energy for a long time. Instead of supporting myself on the walking stick I was twirling it like a sergeant major. If I could have got to one of the nearby hills I reckon I could have hiked up it with ease. Olga was struggling to keep up.
Perhaps the hospital got the tissue samples mixed up and the cancerous tissue wasn't mine at all?
Perhaps the hospital got the tissue samples mixed up and the cancerous tissue wasn't mine at all?
12 August - Still waiting
After another phone call by Olga my treatment programme is being worked on and we have an appointment at Carlisle next Tuesday which will hopefully be the last one before treatment actually starts.
Olga is much better than me at dealing with people on the phone because with her Russian/Ukrainian manner she is not afraid to be pushy or emotional whereas I am too polite and unwilling to seem to be a nuisance or, as she puts it, too English.
Olga is much better than me at dealing with people on the phone because with her Russian/Ukrainian manner she is not afraid to be pushy or emotional whereas I am too polite and unwilling to seem to be a nuisance or, as she puts it, too English.
11 August - The riots
When I was diagnosed with terminal brain cancer I decided to give up the political blogging and the ranting because it felt like a waste of precious time on things that didn't seem to matter so much any more. But over the last few days here in England we have had scenes of rioting and looting that are unprecedented. I could not let these go by without making comment, especially as I believe the cause of the rioting is down to many of the things I was ranting about.
These riots are not about the accidental killing by police of an allegedly innocent black man in east London that most of the rioters never even knew or heard of. They are an expression of anger by a sector of the population that feels ignored and betrayed by the political class that rules this country. There are a lot of us who feel that way. The main difference is, we rant, they riot.
Prime Minister David Cameron said yesterday that "there is a section of our society that is not just broken, but sick." He was right. And in order to see that section of society Mr Cameron and his Westminster colleagues need look no further than the nearest mirror. Because the problem in this country is we have a political class that is completely out of touch with the rest of the population. Politicians of all main parties today take decisions based on their own self interest and those of their counterparts in other countries, at the expense of the people who earn the money to pay the taxes that fund those decisions.
Politics is sick and broken in this country. How else could politicians think they have a moral authority to tell looters how to behave, when only a couple of years ago most of those same politicians were being exposed in the press for having their hands in the till, fiddling their parliamentary expenses?
I read that in one part of London where the trouble first started, four out of the eight youth clubs had closed because of the cuts, while youth unemployment was rocketing. What respect do our politicians think they deserve to be accorded when they cut services to people who need them and destroy their job prospects in order to save rich financial institutions from the consequences of their own greed?
A few days ago, in a discussion about what the financial crisis in the Eurozone would mean to us, a pundit stated that vastly more money would be needed to bail out countries like Greece, Portugal and Italy, and that as a consequence there would have to be deeper cuts and less money to spend on things like healthcare and education. How much respect do you suppose I and others in my situation should have for a political class that deems it more important to use British taxes to pay the debts of foreign countries in order to try to prop up the failing, flawed EU project, than to provide life-saving healthcare for the people who paid those taxes in the first place?
Should I and others needing expensive medical treatment be allowed to die to save the Euro? Should a youth from south London face years of unemployment to avoid a bank going bankrupt?
I don't condone the violence or the looting, but only because the victims are people and businesses that are in no way to blame for the things that the rioters are angry about. But if it makes more people start to think more critically about our government and its policies, if it could even bring down the coalition and force a general election, perhaps some good may come of it.
No amount of stern headmasterly admonishment from Mr David Cameron is going to change anything. The causes of discontent are not going to go away without a complete change of policy that puts people before international politics.If that doesn't happen then one thing is for sure, this won't be the last you hear of riots in English cities.
These riots are not about the accidental killing by police of an allegedly innocent black man in east London that most of the rioters never even knew or heard of. They are an expression of anger by a sector of the population that feels ignored and betrayed by the political class that rules this country. There are a lot of us who feel that way. The main difference is, we rant, they riot.
Prime Minister David Cameron said yesterday that "there is a section of our society that is not just broken, but sick." He was right. And in order to see that section of society Mr Cameron and his Westminster colleagues need look no further than the nearest mirror. Because the problem in this country is we have a political class that is completely out of touch with the rest of the population. Politicians of all main parties today take decisions based on their own self interest and those of their counterparts in other countries, at the expense of the people who earn the money to pay the taxes that fund those decisions.
Politics is sick and broken in this country. How else could politicians think they have a moral authority to tell looters how to behave, when only a couple of years ago most of those same politicians were being exposed in the press for having their hands in the till, fiddling their parliamentary expenses?
I read that in one part of London where the trouble first started, four out of the eight youth clubs had closed because of the cuts, while youth unemployment was rocketing. What respect do our politicians think they deserve to be accorded when they cut services to people who need them and destroy their job prospects in order to save rich financial institutions from the consequences of their own greed?
A few days ago, in a discussion about what the financial crisis in the Eurozone would mean to us, a pundit stated that vastly more money would be needed to bail out countries like Greece, Portugal and Italy, and that as a consequence there would have to be deeper cuts and less money to spend on things like healthcare and education. How much respect do you suppose I and others in my situation should have for a political class that deems it more important to use British taxes to pay the debts of foreign countries in order to try to prop up the failing, flawed EU project, than to provide life-saving healthcare for the people who paid those taxes in the first place?
Should I and others needing expensive medical treatment be allowed to die to save the Euro? Should a youth from south London face years of unemployment to avoid a bank going bankrupt?
I don't condone the violence or the looting, but only because the victims are people and businesses that are in no way to blame for the things that the rioters are angry about. But if it makes more people start to think more critically about our government and its policies, if it could even bring down the coalition and force a general election, perhaps some good may come of it.
No amount of stern headmasterly admonishment from Mr David Cameron is going to change anything. The causes of discontent are not going to go away without a complete change of policy that puts people before international politics.If that doesn't happen then one thing is for sure, this won't be the last you hear of riots in English cities.
9 August - Waiting for treatment
Still feeling OK, but a little frustrated about the length of time it is taking to begin treatment. Given that what I was told I had by one doctor at Newcastle was a "fast growing" tumour, you might think that there would be a bit of urgency about treating it before it grows back to what it was originally.
Last night I expressed this thought to Olga, which was a bad idea as she then spent a sleepless night worrying about it. This morning she telephoned the radiology department at Carlisle to find out what was going on. She was told that the consultant hadn't looked at my scan yet so he had not been able to start to plan my treatment. And there we were believing that the reason it was taking so long was because planning the treatment was complicated!
It seems to me that being a patient means you have to be patient! I assume that the doctors know what they are doing and the reason for the delay is not simply complacency or lack or resources. But nobody tells you anything. Perhaps this is what we get for living in the back of beyond. If we had lived in Newcastle, where I had the brain surgery, or another major city, would I have been receiving treatment by now, nearly 7 weeks after the operation?
Still, we are where we are and we don't have any other options. It would be impractical and even more stressful to try to speed things up by selling all our assets in order to have such expensive treatment privately. It might not make a difference anyway. And it would be a foolish thing to do, since Olga has to be able to survive this financially even if I don't and she is left without a breadwinner.
So we continue to sit and wait for the good old National Health Service to crank into action.
Last night I expressed this thought to Olga, which was a bad idea as she then spent a sleepless night worrying about it. This morning she telephoned the radiology department at Carlisle to find out what was going on. She was told that the consultant hadn't looked at my scan yet so he had not been able to start to plan my treatment. And there we were believing that the reason it was taking so long was because planning the treatment was complicated!
It seems to me that being a patient means you have to be patient! I assume that the doctors know what they are doing and the reason for the delay is not simply complacency or lack or resources. But nobody tells you anything. Perhaps this is what we get for living in the back of beyond. If we had lived in Newcastle, where I had the brain surgery, or another major city, would I have been receiving treatment by now, nearly 7 weeks after the operation?
Still, we are where we are and we don't have any other options. It would be impractical and even more stressful to try to speed things up by selling all our assets in order to have such expensive treatment privately. It might not make a difference anyway. And it would be a foolish thing to do, since Olga has to be able to survive this financially even if I don't and she is left without a breadwinner.
So we continue to sit and wait for the good old National Health Service to crank into action.
8 August - Exercise helps
Cancer patients should do two and a half hours of moderate physical exercise a week, recommends Macmillan Cancer Support which has today launched a campaign called Move More. Taking it easy after treatment is now considered an outdated idea. New research shows that exercise can reduce the risk of dying from cancer and help minimize the side effects of treatment.
Ciaran Devane, chief executive of Macmillan Cancer Support, said: "Cancer patients would be shocked if they knew just how much of a benefit physical activity could have on their recovery and long term health, in some cases reducing their chances of having to go through the gruelling ordeal of treatment all over again. It doesn't need to be anything too strenuous, doing the gardening, going for a brisk walk or a swim, all count."
Well they don't need to tell me. I have been keen to exercise just for the sense of well-being and wanting to be able to do as much as possible what I could do before. If it helps to beat the cancer as well then so much the better.
Enough for now - I'm off to the garage / gym to do a few kilometres on the exercise bike.
Ciaran Devane, chief executive of Macmillan Cancer Support, said: "Cancer patients would be shocked if they knew just how much of a benefit physical activity could have on their recovery and long term health, in some cases reducing their chances of having to go through the gruelling ordeal of treatment all over again. It doesn't need to be anything too strenuous, doing the gardening, going for a brisk walk or a swim, all count."
Well they don't need to tell me. I have been keen to exercise just for the sense of well-being and wanting to be able to do as much as possible what I could do before. If it helps to beat the cancer as well then so much the better.
Enough for now - I'm off to the garage / gym to do a few kilometres on the exercise bike.
5 August - Some improvements
Not much to report. I have been sleeping a little better the last few nights and there have been improvements in physical fitness and general well-being, though some days are better than others. I am able to use the desktop computer now but it doesn't do my eyes any good so I am limiting use of it as much as possible. I use my smartphone for most things and the computer for tasks where the big screen and keyboard are a positive advantage like using eBay or composing longer blog posts.
Still no news of my next appointment to begin the treatment.
Living one day at a time is liberating in a sense, in that one is no longer much concerned about the future. Like most people my age who do not have the luxury of a final salary based pension backed by an employer to retire on I have savings for retirement that are invested in stock market based funds. I would now be feeling extremely anxious about the falls in stock values brought about by the US deficit problem, concerns about the Eurozone and other matters. Now, there seems no point in worrying about it as whatever happens I'll probably never get to spend most of it anyway.
One paper I read recently suggested that there could be a link between stress and cancer. I wonder whether we would live longer and be happier if we all led simpler lives and were more self-sufficient instead of being slaves to work worrying about money, status and possessions?
Still no news of my next appointment to begin the treatment.
Living one day at a time is liberating in a sense, in that one is no longer much concerned about the future. Like most people my age who do not have the luxury of a final salary based pension backed by an employer to retire on I have savings for retirement that are invested in stock market based funds. I would now be feeling extremely anxious about the falls in stock values brought about by the US deficit problem, concerns about the Eurozone and other matters. Now, there seems no point in worrying about it as whatever happens I'll probably never get to spend most of it anyway.
One paper I read recently suggested that there could be a link between stress and cancer. I wonder whether we would live longer and be happier if we all led simpler lives and were more self-sufficient instead of being slaves to work worrying about money, status and possessions?
29 July - Feeling much better
Despite getting a lot less sleep than I normally would during the last couple of days I have felt much better. I have felt positive enough to bring back out of the cupboard the hobby radio stuff I'd put away thinking that I probably wouldn't use it again and might as well sell some of it. I can't say that there is any long term plan or joined-up thinking in anything I am doing but my ability to do stuff is definitely getting back to normal.
Physically I'm feeling fitter, too. When we set off for a walk into town this morning I felt I had enough energy to hike up a small fell. True, I might not have managed it had I the opportunity to try. But I'm certainly managing a brisker walking pace now.
Because of silly superstitions I'm not going to make any optimistic statements that might turn into "famous last words." The trouble with having an engineering background is that I am still predisposed to believe what the experts tell me. I find it strange that I am now unfazed by the knowledge that if I am still here in a year's time I probably won't be for much longer.
But whether my mind has dealt with it or whether I don't really believe it because I don't feel that unwell I can't honestly say. If the migraine-like headache returned I might change my tune, which is why I don't want to tempt fate by making any brave claims about being the guy who against all the odds is going to beat Glioblastoma Multiforme Grade 4. So I'll just carry on taking one day at a time, hoping that with a bit of luck and staying as fit as I can I'll survive for longer than many other people with the same condition.
Physically I'm feeling fitter, too. When we set off for a walk into town this morning I felt I had enough energy to hike up a small fell. True, I might not have managed it had I the opportunity to try. But I'm certainly managing a brisker walking pace now.
Because of silly superstitions I'm not going to make any optimistic statements that might turn into "famous last words." The trouble with having an engineering background is that I am still predisposed to believe what the experts tell me. I find it strange that I am now unfazed by the knowledge that if I am still here in a year's time I probably won't be for much longer.
But whether my mind has dealt with it or whether I don't really believe it because I don't feel that unwell I can't honestly say. If the migraine-like headache returned I might change my tune, which is why I don't want to tempt fate by making any brave claims about being the guy who against all the odds is going to beat Glioblastoma Multiforme Grade 4. So I'll just carry on taking one day at a time, hoping that with a bit of luck and staying as fit as I can I'll survive for longer than many other people with the same condition.
27 July - Exercise bike
Still not sleeping much. Don't know why. The steroids are down to one tablet a day. I'm not anxious or depressed about my situation, not laying awake thinking dark or bitter thoughts. In that respect I seem to be dealing with it better than Olga. I'm just taking each day as it comes and finding things to keep my mind occupied. It's a bit like being on holiday only without the car to go anywhere or the energy to do more strenuous activities.
Yesterday, despite the lack of sleep, I noticed an improvement in my visual and motor functions. I managed to do some quite tricky work with the soldering iron.
Yesterday afternoon we took delivery of an exercise bicycle which this morning we put together. After that I rode a virtual 5km. Hopefully it will not be a five minute wonder like the one I had a few years ago which ended up in a charity shop when I got fed up with falling over it. At least we now have extra space for it - in the garage.
I do have a reason for getting this exercise bike as it will mean I won't have an excuse not to exercise if the weather turns cold and wet which, this being Cumbria in North West England, it is bound to do eventually.
The exercise bike is an interesting example of retail profit margins. We saw it in the Argos catalogue where it was being sold for £199.99, reduced from £299.99. But when Olga went to the Argos website the same model was now being sold for £89.99, previous price £99.99. However Argos would only promise delivery within 21 days and we wanted it now, so I did some searching and eventually got the same machine from an eBay seller of retail returns for £74.95 plus £4.95 shipping by next day courier. Which is about what it is actually worth, to look at it. But it will do the job just fine, I think.
Yesterday, despite the lack of sleep, I noticed an improvement in my visual and motor functions. I managed to do some quite tricky work with the soldering iron.
Yesterday afternoon we took delivery of an exercise bicycle which this morning we put together. After that I rode a virtual 5km. Hopefully it will not be a five minute wonder like the one I had a few years ago which ended up in a charity shop when I got fed up with falling over it. At least we now have extra space for it - in the garage.
I do have a reason for getting this exercise bike as it will mean I won't have an excuse not to exercise if the weather turns cold and wet which, this being Cumbria in North West England, it is bound to do eventually.
The exercise bike is an interesting example of retail profit margins. We saw it in the Argos catalogue where it was being sold for £199.99, reduced from £299.99. But when Olga went to the Argos website the same model was now being sold for £89.99, previous price £99.99. However Argos would only promise delivery within 21 days and we wanted it now, so I did some searching and eventually got the same machine from an eBay seller of retail returns for £74.95 plus £4.95 shipping by next day courier. Which is about what it is actually worth, to look at it. But it will do the job just fine, I think.
24 July - A 5km walk
Went for a walk of about 5km over the fields to the north of the town on a glorious sunny day. The walk involved some gentle climbing up out of the valley to a point where we could look down over the town and the distant fells.
I couldn't have managed it without the walking stick, both for extra propulsion up the hill and for steadiness. Although I'm walking quite strongly my head still spins a bit and it isn't uncommon for me to almost lose my balance, especially if I turn to look at the view or something in a passing shop window rather than looking straight ahead and concentrating on where I'm going. I'm guessing this is a brain problem not a fitness problem and have no idea whether it will clear up or not.
It is good to feel strength in my legs and to do something not too different from what I would normally have done before the tumour.
I couldn't have managed it without the walking stick, both for extra propulsion up the hill and for steadiness. Although I'm walking quite strongly my head still spins a bit and it isn't uncommon for me to almost lose my balance, especially if I turn to look at the view or something in a passing shop window rather than looking straight ahead and concentrating on where I'm going. I'm guessing this is a brain problem not a fitness problem and have no idea whether it will clear up or not.
It is good to feel strength in my legs and to do something not too different from what I would normally have done before the tumour.
21 July - CT scan
Back to Carlisle for the CT scan. This time we went using the hospital car service. It saved us a taxi fare but it was a bit of a palaver to arrange; we had to be ready an hour earlier than if we had booked our own taxi and the service can't usually accommodate spouses or partners who wish to accompany patients to their appointments as the cars are usually full. So I expect we'll be using taxis when I start going for treatment.
At the hospital a nurse inserted a big needle with a plumbing attachment into a vein in my arm so they could inject the contrast dye for the scanner. Then off for a scan using the radiology department's brand new Philips CT scanner, commissioned this week, the wait for which I suspect is one reason why treatment is being a bit slow at getting started.
Back on the bed, head on the neck rest and the mask made on Tuesday was clipped into place. Momentarily a bit unnerving as it held my head more firmly than I remembered, but a few deep breaths and calm thoughts about the good this was going to do relaxed me. The doctor injected the contrast dye into the bloodstream, then I'm moved into the scanner which was very quick.
And that was it. There will be an appointment for a further scan after the doctor has worked out the plan. Until then I have another couple of weeks of "freedom."
At the hospital a nurse inserted a big needle with a plumbing attachment into a vein in my arm so they could inject the contrast dye for the scanner. Then off for a scan using the radiology department's brand new Philips CT scanner, commissioned this week, the wait for which I suspect is one reason why treatment is being a bit slow at getting started.
Back on the bed, head on the neck rest and the mask made on Tuesday was clipped into place. Momentarily a bit unnerving as it held my head more firmly than I remembered, but a few deep breaths and calm thoughts about the good this was going to do relaxed me. The doctor injected the contrast dye into the bloodstream, then I'm moved into the scanner which was very quick.
And that was it. There will be an appointment for a further scan after the doctor has worked out the plan. Until then I have another couple of weeks of "freedom."
20 July - Treatment and prognosis
I finally felt brave enough to do a bit of online research into my brain tumour, which is described as a Glioblastoma Multiforme Grade 4. According to Wikipedia it is the most common and most aggressive type of malignant brain tumour. Despite this, it occurs in only 2 to 3 in every 100,000 people in Europe and North America. So it seems that I, who normally never even wins the club raffle, really hit the jackpot with this one.
The treatment I am receiving - craniotomy to remove as much of the tumour as possible, followed by a combined course of conformal radiotherapy and temozolomide chemotherapy - is the most common and generally regarded as most effective form of treatment. Nevertheless prognosis is poor. In a clinical trial of 575 patients receiving this treatment the median survival rate was 14.6 months. (Without chemotherapy this was reduced to 12 months.)
The most important factor determining the survival period would seem to be how much of the tumour was removed during the craniotomy. A typical tumour contains 10^11 cancerous cells. This is reduced to 10^9 if the surgeons remove 98% of it. Radiotherapy can kill 98% of those, reducing the number to 10^9. But that is still a lot of cells that will eventually multiply, grow the tumour and kill the patient.
There are reasons to be optimistic. Olga saw the surgeon as I came out of the operating theatre. She says he looked pleased, was smiling and said the operation went very well and I would be OK. So perhaps he got more than 98% of the bugger. Time will tell.
Temozolomide is a chemotherapy drug that is used to treat newly diagnosed glioblastoma in patients that are fit enough to look after themselves. It can be taken orally as it has the ability to penetrate the barrier to the brain so that it can reach the cells it is designed to treat. It works by blocking the ability of the cancerous cells to make DNA so they are unable to replicate. It also increases the effectiveness of the radiotherapy.
Although temozolomide has side effects, including nausea and a weakening of the immune system, it is not as bad as some chemotherapy drugs according to some sources. If I can avoid picking up any bugs hopefully it will not be too bad.
The reason it takes a long time to start the actual radiotherapy is apparently that the planning is very time consuming. A lot of precise calculations have to be made in order to target the X-rays on the cancerous cells in the brain while avoiding everything else. The nurse technician yesterday said "the maths can be complicated." I had visions of teams of people slaving over calculators but I presume they use computer modelling.
Given how I feel right now and what I now know about the treatment, I'm hopeful that I can beat that 14.6 months prognosis by a significant margin.
The treatment I am receiving - craniotomy to remove as much of the tumour as possible, followed by a combined course of conformal radiotherapy and temozolomide chemotherapy - is the most common and generally regarded as most effective form of treatment. Nevertheless prognosis is poor. In a clinical trial of 575 patients receiving this treatment the median survival rate was 14.6 months. (Without chemotherapy this was reduced to 12 months.)
The most important factor determining the survival period would seem to be how much of the tumour was removed during the craniotomy. A typical tumour contains 10^11 cancerous cells. This is reduced to 10^9 if the surgeons remove 98% of it. Radiotherapy can kill 98% of those, reducing the number to 10^9. But that is still a lot of cells that will eventually multiply, grow the tumour and kill the patient.
There are reasons to be optimistic. Olga saw the surgeon as I came out of the operating theatre. She says he looked pleased, was smiling and said the operation went very well and I would be OK. So perhaps he got more than 98% of the bugger. Time will tell.
Temozolomide is a chemotherapy drug that is used to treat newly diagnosed glioblastoma in patients that are fit enough to look after themselves. It can be taken orally as it has the ability to penetrate the barrier to the brain so that it can reach the cells it is designed to treat. It works by blocking the ability of the cancerous cells to make DNA so they are unable to replicate. It also increases the effectiveness of the radiotherapy.
Although temozolomide has side effects, including nausea and a weakening of the immune system, it is not as bad as some chemotherapy drugs according to some sources. If I can avoid picking up any bugs hopefully it will not be too bad.
The reason it takes a long time to start the actual radiotherapy is apparently that the planning is very time consuming. A lot of precise calculations have to be made in order to target the X-rays on the cancerous cells in the brain while avoiding everything else. The nurse technician yesterday said "the maths can be complicated." I had visions of teams of people slaving over calculators but I presume they use computer modelling.
Given how I feel right now and what I now know about the treatment, I'm hopeful that I can beat that 14.6 months prognosis by a significant margin.
19 July - Man in the mask
To the Radiotherapy Department at Carlisle Infirmary for the first step to the actual treatment. This is the manufacture of the mask or mould that will hold my head in the correct position for the radiotherapy treatment.
I'm impressed by the efficiency. They are ready on the dot of the appointment. The nurse technician takes care to explain all the treatment I will receive as well as what they plan to do during this visit.
For making the mask I lie down on a hard bed and a neck rest is selected to make me comfortable. The mask starts off as something that looks a bit like a thin toilet seat with a cut-out at the front. There are studs round the edge of the "seat" that lock into the bed, and the hole in the middle has a coarse mesh thermoplastic material stretched over it.
The thermoplastic is softened in hot water and then it is placed over my head. The studs go in with a snap and the two nurses work quickly moulding the material to the shape of my head paying particular attention to my nose and ears. It is not an unpleasant sensation, like having a hot towel on your face.
After a few minutes the mould is starting to set and soon after that the job is done. The studs come out and I can sit up and see the finished result.
Then off for a blood test in preparation for a CT scan which will be done on Thursday. This, I am advised, is just part of the preparatory work and not a diagnostic scan so I don't need to worry about receiving more bad news after it.
That's it for today, so we catch a bus into Carlisle city centre for some shopping and lunch.
I'm impressed by the efficiency. They are ready on the dot of the appointment. The nurse technician takes care to explain all the treatment I will receive as well as what they plan to do during this visit.
For making the mask I lie down on a hard bed and a neck rest is selected to make me comfortable. The mask starts off as something that looks a bit like a thin toilet seat with a cut-out at the front. There are studs round the edge of the "seat" that lock into the bed, and the hole in the middle has a coarse mesh thermoplastic material stretched over it.
The thermoplastic is softened in hot water and then it is placed over my head. The studs go in with a snap and the two nurses work quickly moulding the material to the shape of my head paying particular attention to my nose and ears. It is not an unpleasant sensation, like having a hot towel on your face.
After a few minutes the mould is starting to set and soon after that the job is done. The studs come out and I can sit up and see the finished result.
Then off for a blood test in preparation for a CT scan which will be done on Thursday. This, I am advised, is just part of the preparatory work and not a diagnostic scan so I don't need to worry about receiving more bad news after it.
That's it for today, so we catch a bus into Carlisle city centre for some shopping and lunch.
17 July - Winning the lottery
We won the lottery yesterday. When I saw the email this morning I thought wouldn't it be just my luck to win a million and not have time to spend it! As Olga says, what use is money if you don't have health? But the win was only a tenner. It won't change my life.
After our amble into town this afternoon Olga says I am walking more strongly. People we meet ask how I am and enquire about the treatment. When I tell them I will be travelling five days a week for six weeks to Carlisle and back by taxi there is always a sharp intake of breath, a comment about how expensive that will be and questions about whether an ambulance service can take me.
I stopped thinking about money when the Newcastle hospital registrar gave me a use by date. In any case, I don't consider it anyone's responsibility to get me to the hospital for treatment but my own. If we run up a bill of £3 - 4000 in taxi fares then that is no more than we might have spent having the kitchen re-done or the carpets replaced.
And the treatment itself is free. If this had happened to one of Olga's friends or relatives in Ukraine, they would have to pay the full cost of medicines as well.
So new carpets or cancer treatment? Not one of life's tougher decisions.
After our amble into town this afternoon Olga says I am walking more strongly. People we meet ask how I am and enquire about the treatment. When I tell them I will be travelling five days a week for six weeks to Carlisle and back by taxi there is always a sharp intake of breath, a comment about how expensive that will be and questions about whether an ambulance service can take me.
I stopped thinking about money when the Newcastle hospital registrar gave me a use by date. In any case, I don't consider it anyone's responsibility to get me to the hospital for treatment but my own. If we run up a bill of £3 - 4000 in taxi fares then that is no more than we might have spent having the kitchen re-done or the carpets replaced.
And the treatment itself is free. If this had happened to one of Olga's friends or relatives in Ukraine, they would have to pay the full cost of medicines as well.
So new carpets or cancer treatment? Not one of life's tougher decisions.
14 July - A trip to Keswick
We went to Keswick for the day on the bus. It was the first time I had been out of Cockermouth since hospital and I wanted to see that I could still go places, even if not the places I would normally have gone on a day like this. The weather during the last couple of weeks has been gorgeous and I would undoubtedly have spent several days out walking on the fells were it not for this damned brain tumour. The thought that I have missed this opportunity, may not even have the opportunity again, depresses me so I try not to think about it.
In Keswick we bought a cool soft hat to hide my embarrassment when we cut my hair off in a couple of days time in preparation for the radiotherapy. It doesn't have to come off but everyone says that it will fall out in clumps where the X-rays go in so I may as well get rid of it from the outset.
Then we walked down to the lake, slowly and in stages, and sat in the sun enjoying the view. We had a salad lunch at the Theatre by the Lake, then walked slowly back to the bus station. We probably only walked a couple of miles in total but my calf muscles felt like they had done a full hike.
So a good day, all things considered. After treatment starts I won't have the energy to even walk round the block, I'm reliably informed, so whilst I can it's important to make the most of it.
12 July - Motorola Milestone
Sleeping a bit better now. Still feeling light-headed and weak and wobbly on my feet. Fitness seems to have hit a plateau. People with experience tell me it's amazing that I am walking about as well as I am only two weeks after being discharged from the hospital, but I am frustrated that I am not noticing daily improvements. But it's good to amaze people. Hope I can keep it up.
My new Motorola Milestone 2 smartphone came on Monday so I have been busy playing with it and trying to get it set up the way I want. There's nothing like a few geek toys to keep the mind occupied and off darker thoughts. It really is a super gadget and does everything I want. I'm even posting this on it. The screen is easier on my eyes than the PC screen is. But I can't figure out how to position the cursor in this Blogger text entry box in order to edit what I have typed.
My new Motorola Milestone 2 smartphone came on Monday so I have been busy playing with it and trying to get it set up the way I want. There's nothing like a few geek toys to keep the mind occupied and off darker thoughts. It really is a super gadget and does everything I want. I'm even posting this on it. The screen is easier on my eyes than the PC screen is. But I can't figure out how to position the cursor in this Blogger text entry box in order to edit what I have typed.
9 July - Margery and a concert
On Friday evening one of our wonderful neighbours, Margery, a lady of 87 who looks 30 years younger, has survived about 3 life threatening illnesses and is still full of optimism and life, invited Olga and myself for supper. It was a big help for Olga who is very tired.
Whilst we were there Margery mentioned that she and a friend were going to a piano recital at the Rosehill Theatre near Whitehaven the following night. I wondered whether there would still be tickets and a few minutes later two tickets had been reserved and arrangements made for Olga and I to go with Margery and her friend to the concert.
I was tired after the supper so we decided to take it easy on Saturday and conserve my energy for the concert. Although it is not very far away we had never been to the Rosehill Theatre before. It is a charming, very small theatre set up on a hill behind Whitehaven and was apparently established in the 1950s to provide some cultural life for the top scientists and intellectuals who were employed at Windscale, Britain's first atomic plant, who would otherwise have been difficult to persuade to come to such an isolated spot. We met one of them, now 87 and walking on sticks, who told us that he "came for 5 years and ended up staying for 50." We had a short conversation - he asked Olga about Chernobyl and wished me luck with my treatment.
We enjoyed the concert very much, and it was a real treat and a morale booster to get out of the house and engage in normal life for a bit.
Whilst we were there Margery mentioned that she and a friend were going to a piano recital at the Rosehill Theatre near Whitehaven the following night. I wondered whether there would still be tickets and a few minutes later two tickets had been reserved and arrangements made for Olga and I to go with Margery and her friend to the concert.
I was tired after the supper so we decided to take it easy on Saturday and conserve my energy for the concert. Although it is not very far away we had never been to the Rosehill Theatre before. It is a charming, very small theatre set up on a hill behind Whitehaven and was apparently established in the 1950s to provide some cultural life for the top scientists and intellectuals who were employed at Windscale, Britain's first atomic plant, who would otherwise have been difficult to persuade to come to such an isolated spot. We met one of them, now 87 and walking on sticks, who told us that he "came for 5 years and ended up staying for 50." We had a short conversation - he asked Olga about Chernobyl and wished me luck with my treatment.
We enjoyed the concert very much, and it was a real treat and a morale booster to get out of the house and engage in normal life for a bit.
8 July - News of my treatment
A letter arrives from the Radiotherapy Department at Cumberland Infirmary with news of the next stages in my treatment.
On 19 July I have an appointment to have a thermoplastic mould made of my head. This will be worn during treatment to keep my head still and in the precisely correct position so that the radiotherapy beam can be targeted at the tumour.
Then on 21 July there will be a second appointment for me to have a CT scan wearing the mask so that they can produce the plan for the treatment.
My Macmillan nurse phoned to confirm this information. She said that she expected the actual treatment would begin in August.
On 19 July I have an appointment to have a thermoplastic mould made of my head. This will be worn during treatment to keep my head still and in the precisely correct position so that the radiotherapy beam can be targeted at the tumour.
Then on 21 July there will be a second appointment for me to have a CT scan wearing the mask so that they can produce the plan for the treatment.
My Macmillan nurse phoned to confirm this information. She said that she expected the actual treatment would begin in August.
7 July - We meet our Macmillan Nurse
Another night with not much sleep. But feeling reasonably well and alert in the morning. Spent a couple of hours playing with my radio "toys" and ordered a new Android Smartphone so I can get rid of the ghastly Windows Mobile that prevented me from accessing email when I was in hospital.
After lunch had a meeting with the local Macmillan Nurse. This was extremely useful. For the first time, someone sat down with us who had the time to answer all of our questions. She was also able to tell us of the various other support services available, which include Hospice at Home and respite care to relieve Olga should I become so ill that she daren't leave me. All free, either through the NHS or charitable organizations. I was really quite impressed.
I can apply for a disabled parking card that will allow anyone who takes me somewhere by car to park in reserved for disabled spaces. Apparently I am then also entitled to a free bus pass! I am even entitled to claim a disability benefit - though I gained another unwelcome insight into the way the professionals view my case when I was told that payment would be expedited under a special rule for patients that are not expected to live for six months!
The nurse gave us some more information about the actual treatment. I had read that radiotherapy makes you feel tired, but she said that "it will make you feel tired as never before." Many people just crawl into bed after treatment. So it is likely that the next couple of weeks before treatment begins will be the best couple of weeks I will have for a while, at least.
What seems most important to me now is to make the most of these few days when I feel in a state of dreamlike well-being, to enjoy them as much as possible.
After lunch had a meeting with the local Macmillan Nurse. This was extremely useful. For the first time, someone sat down with us who had the time to answer all of our questions. She was also able to tell us of the various other support services available, which include Hospice at Home and respite care to relieve Olga should I become so ill that she daren't leave me. All free, either through the NHS or charitable organizations. I was really quite impressed.
I can apply for a disabled parking card that will allow anyone who takes me somewhere by car to park in reserved for disabled spaces. Apparently I am then also entitled to a free bus pass! I am even entitled to claim a disability benefit - though I gained another unwelcome insight into the way the professionals view my case when I was told that payment would be expedited under a special rule for patients that are not expected to live for six months!
The nurse gave us some more information about the actual treatment. I had read that radiotherapy makes you feel tired, but she said that "it will make you feel tired as never before." Many people just crawl into bed after treatment. So it is likely that the next couple of weeks before treatment begins will be the best couple of weeks I will have for a while, at least.
What seems most important to me now is to make the most of these few days when I feel in a state of dreamlike well-being, to enjoy them as much as possible.
6 July - Can't sleep
Another day, another restless night. Inability to sleep is one of the effects of the steroid medication I am taking to control the brain swelling, apparently. I have started taking a couple of codeine tablets at night - though I'm not in any pain - and they make me drowsy and I get two or three hours sleep if I'm lucky. But once I wake up I can't get back to sleep again. Last night I was kept awake by a Beethoven piano sonata I'd heard a couple of evenings ago playing endlessly in my head.
I had the idea to look and see if other people had written blogs about their brain tumours. I added a few links to the right hand sidebar of blogs I might start to follow up if I'm brave but it was really a bad idea. Many of the people had nasty symptoms and problems with the treatment and just about all the people who started blogs eventually died. Not much of a boost to my hopes that I can be the one to beat the bugger.
I had the idea to look and see if other people had written blogs about their brain tumours. I added a few links to the right hand sidebar of blogs I might start to follow up if I'm brave but it was really a bad idea. Many of the people had nasty symptoms and problems with the treatment and just about all the people who started blogs eventually died. Not much of a boost to my hopes that I can be the one to beat the bugger.
5 July - Learning about my treatment
The last few days have been a bit surreal. I'm still feeling weak, tired, a bit unsteady on my feet and have trouble sleeping, but I'm starting to take more interest again in other things, am eating like a horse (and not putting any weight on!) and really feel as if in a couple of weeks I might be back to normal. It's hard to believe what the doctors told me, and I suspect this disbelief has a lot to do with how optimistic I feel at the moment.
This morning we went for the appointment at the Radiotherapy and Oncology Department at Carlisle Infirmary. At least this doctor didn't use words like "incurable" or give me an expiry date, unlike the sadist at Newcastle. Olga was so anxious about what we might learn I was afraid she might pass out before we were called to see the doctor.
In the end we didn't learn much that was new. The doctor told me some technical stuff about the tumour that I didn't understand, except that it was a "Grade 4". I asked if that was good; his reply was on the lines of not from my point of view.
The surgeons at Newcastle had removed as much of it as they could, but they could not be sure to have removed all the fast multiplying cancerous cells. Therefore the doctors are recommending a course of treatment consisting of radiotherapy and chemotherapy. This will begin in about four weeks. I don't know the reason for the delay, unless it is to give me more time to build up my strength after the operation. From what I have been told about the side effects and things I will be at increased risk of during treatment I will need to be strong to survive it!
The radiotherapy will last for six weeks and will involve daily (weekday) visits to Carlisle for treatment.
The chemotherapy will start at the same time and will continue for about six months after the end of the radiotherapy, depending of course on how the patient responds to the treatment. The drug they will be using is Temozolomide (Temodal). If the radiotherapy doesn't make me feel ill the drugs will, by the look of it.
For now all I can do is take it easy and build my strength up. The only things I'm not allowed to do is drive a car (which I already knew) or go swimming, which I couldn't anyway. I'm even allowed a glass or two of wine with my dinner if I want to, which is cheering!
I'm not looking forward to the treatment, which seems guaranteed to make me feel like shit, but not having it is not an option. It's my only chance to beat the bugger and I'm going to give it a damn good try if at all possible.
Thanks to all who have written with cards and well wishes.
This morning we went for the appointment at the Radiotherapy and Oncology Department at Carlisle Infirmary. At least this doctor didn't use words like "incurable" or give me an expiry date, unlike the sadist at Newcastle. Olga was so anxious about what we might learn I was afraid she might pass out before we were called to see the doctor.
In the end we didn't learn much that was new. The doctor told me some technical stuff about the tumour that I didn't understand, except that it was a "Grade 4". I asked if that was good; his reply was on the lines of not from my point of view.
The surgeons at Newcastle had removed as much of it as they could, but they could not be sure to have removed all the fast multiplying cancerous cells. Therefore the doctors are recommending a course of treatment consisting of radiotherapy and chemotherapy. This will begin in about four weeks. I don't know the reason for the delay, unless it is to give me more time to build up my strength after the operation. From what I have been told about the side effects and things I will be at increased risk of during treatment I will need to be strong to survive it!
The radiotherapy will last for six weeks and will involve daily (weekday) visits to Carlisle for treatment.
The chemotherapy will start at the same time and will continue for about six months after the end of the radiotherapy, depending of course on how the patient responds to the treatment. The drug they will be using is Temozolomide (Temodal). If the radiotherapy doesn't make me feel ill the drugs will, by the look of it.
For now all I can do is take it easy and build my strength up. The only things I'm not allowed to do is drive a car (which I already knew) or go swimming, which I couldn't anyway. I'm even allowed a glass or two of wine with my dinner if I want to, which is cheering!
I'm not looking forward to the treatment, which seems guaranteed to make me feel like shit, but not having it is not an option. It's my only chance to beat the bugger and I'm going to give it a damn good try if at all possible.
Thanks to all who have written with cards and well wishes.
30 June - A bombshell
Had some sleep for the first night since receiving the 'bombshell' news. Feeling a bit better physically. Head still swims like I have had a few too many drinks and I am unsteady on my feet but I can walk a reasonable distance not too quickly.
Received a phone call arranging an appointment next Tuesday at the hospital in Carlisle to discuss my treatment with the specialists. Also had to attend the GP surgery (by taxi) to have the clips removed from the back of my head where they operated. Less painful than expected.
Didn't learn much else from the GP but received another bombshell. I will have to give up driving! Not that I would want to drive in my current condition but with feeling fitter each day I began thinking that perhaps in a few weeks after the treatment is over I would be able to. But it isn't permitted. GP informs me that after a craniectomy you are not allowed to drive for six months and with the symptoms I have had it would more likely be a year before I could reapply for my licence. If I survive that long! So my hopes of being able to get out into the Lake District and resuming normal activities any time soon are dashed - here there is not much public transport. It's a blow to morale.
Manage to walk home from the surgery with Olga and even pick up a few food items in Sainsbury's. More than a mile, which is a mood booster! After lunch, crash out on the recliner totally exhausted!
Received a phone call arranging an appointment next Tuesday at the hospital in Carlisle to discuss my treatment with the specialists. Also had to attend the GP surgery (by taxi) to have the clips removed from the back of my head where they operated. Less painful than expected.
Didn't learn much else from the GP but received another bombshell. I will have to give up driving! Not that I would want to drive in my current condition but with feeling fitter each day I began thinking that perhaps in a few weeks after the treatment is over I would be able to. But it isn't permitted. GP informs me that after a craniectomy you are not allowed to drive for six months and with the symptoms I have had it would more likely be a year before I could reapply for my licence. If I survive that long! So my hopes of being able to get out into the Lake District and resuming normal activities any time soon are dashed - here there is not much public transport. It's a blow to morale.
Manage to walk home from the surgery with Olga and even pick up a few food items in Sainsbury's. More than a mile, which is a mood booster! After lunch, crash out on the recliner totally exhausted!
29 June - Brain Tumour
When I started this blog I chose the name "One Foot in the Grave" as it was going to contain my Victor Meldrew-esque rants about life in the UK and in general. Having in the last two days learned that I have a fast growing incurable brain tumour, the title now seems to have taken on another meaning.
Henceforth, this blog will be used to update my online friends on my progress with treatment. Olga will post if I am unable to.
All previous rants and political posts have been deleted. It's amazing how wonderful the world seems and how little there is to complain about when time suddenly becomes precious and you just want to share as much of it as you can with the person who loves you.
Henceforth, this blog will be used to update my online friends on my progress with treatment. Olga will post if I am unable to.
All previous rants and political posts have been deleted. It's amazing how wonderful the world seems and how little there is to complain about when time suddenly becomes precious and you just want to share as much of it as you can with the person who loves you.
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