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.

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.

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.

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!

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.

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.

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.

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.
  • 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.
I think I should be taking this! However Clomipramine is only available on prescription in the UK, where it is used to treat OCD sufferers and by vets to treat badly behaved dogs. So I can't nip down to Boots and buy some tablets but I could try obsessively and compulsively barking at the postman and go to the vet.

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.

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.

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.

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?

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.

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.

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.

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.

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?