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?