26 March - Feeling dizzy

This last session of chemo has knocked me for six a bit. Until then I would feel a little dizzy if I climbed the stairs a bit too quickly. But at the moment even getting up from a chair makes my head spin as if I am about to faint.

According to "Living with a Brain Tumour" chemotherapy affects the bone marrow causing low counts of red cells in the blood. From school biology lessons I seem to recall that those are the cells that carry oxygen round the body. So I think the dizziness is due to the brain not receiving as much oxygen as it would like. In other words it is to be expected and I will just have to take it easier for a while.

It would be nice to know how long it takes the blood to recover once the chemotherapy is over, though, and whether there is anything I can do to speed the recovery process up a bit.

23 March - Hospital appointment

Afternoon appointment with the oncologist in Carlisle. Nothing new to report. No new symptoms means everything is going OK. Had a blood test and collected the prescription for the sixth and final chemotherapy cycle which I start on Saturday.

Next appointment with the doc will be in two months time, before which I should have received an appointment for an MRI scan. Then the doctors will be able to actually see how well the treatment has gone.

Olga asked if I was to continue taking the steroids (dexamethazone) after the chemo was finished. So the doctor has given me a programme to step down the steroids from the current 4mg a day to zero over the next 4 weeks. If I don't feel ill or have headaches then I could be free of medication by this time next month, but if any symptoms appear I will go back to 4mg. So fingers crossed...

22 March - An afternoon by the lake

An absolutely glorious Spring day. One of our neighbours who had a job to do near Crummock Water offered to take us for an afternoon out. We went to Lanthwaite Green and Olga and I strolled slowly along the level paths at the head of the lake for a couple of hours. It was the longest distance I have walked for a few months.

JM at the head of Crummock Water
It was wonderful to be out in the beautiful Lake District on such a perfect day, but I did get a lump in my throat when I looked at the surrounding hills and remembered the summits - all of which I have visited at one time or another - and wondered if I would ever get up there again. Even a modest slope on uneven ground presented a bit of a challenge due to the wobbly legs and vertigo. What seems easy whilst sitting comfortably is a different matter in practice.

14 March - Dichloroacetate

Still soldiering on. A reader from the USA wrote to direct me to an article about using the orphan generic drug dichloroacetate (DCA) as a treatment for glioblastoma. As with clomipramine, this seems to be another case of a drug originally developed to treat other conditions turning out to have potential uses against brain cancer. It isn't something I'd want to try now, never mind on my own initiative - the article suggests that this could be dangerous. But it is certainly something worth knowing about.

It is interesting that the clinical trials which took place in Canada were funded by public institutions. Here in the UK it appears that trials into the use of inexpensive generic drugs like clomipramine or dichloroacetate are never likely to take place as there is no money to be made from them by the drugs companies. Why doesn't our NHS fund research like this? It would probably cost a fraction of the money that has been squandered on IT systems as well as opening the door to lower cost treatments. As so often in this country, there is an unhealthy relationship between our politicians, public services and big business.

3 March - Novocure

One of my readers wrote to me last night to say "do a web search on novocure." I did. It appears to be a new cancer treatment currently undergoing clinical trials in the USA and Europe which is relevant to the treatment of brain tumours as well as other types of cancer.

There are no clinical trials of novocure currently taking place in the UK, however. Furthermore it appears I would fail the inclusion criteria shown on the website. My glioblastoma is neither newly diagnosed nor recurrent and has received other treatment (intensive temozolomide and clomipramine) since diagnosis.

To be honest I would not sign up for a clinical trial even if I did qualify. I have accepted my situation, whatever that turns out to be. At the same time I don't think my life expectancy will be as short as the prognosis I was given last summer. I believe we are beating the bugger at the moment.

I hate being in hospital. I would rather receive the treatment I am currently getting as an outpatient and see out my days in the comfort of my own home than spend much of the time left to me travelling to and from distant hospitals or having to undergo further operations (as I believe would be necessary for novocure which must be physically delivered to the tumour.) I am also given to believe that participants in clinical trials may receive a placebo instead of the drug. I'd rather know that I am receiving treatment.

But it's good to know what options are available. I'm writing this blog not just for myself but for others who learn that they or a friend or relative has a brain tumour and I appreciate all relevant comments.