30 January - Prunes and laxatives

I'm sure you are all happy to know that I survived the start of my fourth chemotherapy cycle without suffering chronic constipation. :) This time we were prepared. Besides my usual prunes for breakfast we stepped up the laxative tablets to three a day, plus a dish of beetroot before lunch and dinner. We also had more liquid meals such as borscht or stew. I don't think I can look at another beetroot - not for another 4 weeks anyway. As suggested by the doctor, I also took only one anti-sickness tablet per day instead of two.

The chemo still makes me more than usually lethargic (or just plain lazy) but it was a fine day so this afternoon I hauled ass and Olga and I walked to Harris Park and back - the best part of a couple of miles. This seems to be about my limit these days, and I'm still very sweaty by the end of it.

The higher mountains of the Lake District were iced white with snow. Looking across at them I felt rather sad: I doubt if I will ever regain enough fitness to walk the fells again.

I don't understand why I feel so physically weak when it was only my brain that has had surgery, but I believe it may be down to the dexomethasone, a cortico-steroid, which I take to control inflammation of the brain that might otherwise cause headaches or seizures. These steroids are completely different from the kind taken by body-builders and cause muscle wastage (and many other harmful effects, if you read the packet.) So I have lost fitness built up over many years that will probably take years to regain, if ever.

23 January - Significant improvement

"Significant improvement." That's what the doctor said my MRI scan results showed, during my re-scheduled appointment this morning. Good news for sure, yet I'm feeling vaguely short-changed that something which was such a big deal for me resulted in just a two-word answer which I wouldn't have received at all if I had not asked about the scan specifically. The entire consultation lasted less than five minutes.

I did learn that the bad constipation I have experienced when taking the heavy dose of temozolomide is caused by the anti-sickness tablets I take to avoid heaving them up again. The doctor suggested I take just one tablet instead of two a day. So far I have never felt like being sick at all and during the radiotherapy when I was taking a lesser dose of temozolomide I stopped taking the anti-sickness pills altogether. So this looks like something I can try.

It seems the public service cuts are beginning to bite. North Cumbria NHS Trust has one of the biggest deficits in the country I believe, and the effects are being felt by the drivers in the ambulance and transport service for whom all overtime has stopped. Patients now must book their own transport but have to provide increasing justification that they need it. I think that now my outpatient visits are down to once every 4 weeks we will have to take up some of the offers of lifts we have received, or consider getting the 600 bus which runs once every two hours to Carlisle from Cockermouth. If we had a driver in the family we'd be taking ourselves and paying for petrol and car parking so I don't know why they can't ask patients to pay the costs of the transport service instead of restricting it: It would still be cheaper than going by taxi.

"Significant improvement." Good news, anyway. I'd still like to have seen the evidence with my own eyes but I guess I should be happy with the answer and stop complaining.

20 January - A let down

Today we were supposed to go to Carlisle for an appointment with the consultant oncologist, also to have a blood count and pick up the temazolomide tablets for my fourth chemotherapy cycle due to start on Monday. We were also, of course, expecting to get the results of the MRI scan that I had a couple of weeks earlier. Although I don't think I have anything to worry about I was still a little bit anxious as some other brain tumour sufferers have learned what they didn't want to hear when the results came back.

Olga phoned the hospital yesterday to confirm that transport had been arranged and was told we should expect a car from 12:30 for our 14:15 appointment. 12:30 came and went. As did 13:30, the point at which making the appointment on time by any means was no longer possible. It's doubtful we could even have arranged a taxi at such short notice because at that time of day the local taxi firms are on pre-booked school runs.

Olga spoke to the consultant's secretary who checked and told us that the transport had not been booked. This despite the transport box on my appointment card being ticked. Clearly the administrative clerk failed to tick the box on the sheet from which the transport arrangements are made up and the person Olga spoke to yesterday didn't even bother to check. Olga was asked to check in future that the request for transport was recorded. So as well as going for treatment we are apparently supposed to supervise the NHS admin staff.

This is the first time we have been let down by the hospital transport service and to be clear it is not the fault of the volunteer drivers, who often complain about being sent to pick up people whose clinics have been cancelled and other administrative failures. It is frustrating when you live in a place with next to no public transport having to depend on other people to get to and from hospital appointments and always being on tenterhooks over whether the car will come or not.

So now I have to wait until Monday morning, the time of my new appointment, to learn the result of my MRI scan, and I will start the new chemo cycle a day late. No big deal, but a lot of frayed nerves and half a day spent for no useful purpose.

15 January - Life goes on

Life goes on. I'm not feeling too bad at the moment. Not as fit or alert as I was before the tumour. But fit and alert enough to get frustrated and annoyed when I want to do something and find it much more difficult or even impossible. Then I have to go and read the stories of some other people who have glioblastoma to remind myself that I've been relatively lucky not to have had worse symptoms of the tumour or side effects of the treatments.

I've added a Useful Links panel to the blog. This is to help new readers find information related to the use of clomipramine to treat brain tumours and one or two other useful web sites.

5 January - MRI scan

I've had my MRI scan. Nothing very interesting to say about it. I just had to lie still on a table while the radiographers operated the machine.

I don't expect to be told the results until my next appointment with the oncologist in two weeks' time. In fact, if they contact us early we'll only worry that the scan revealed something that needed more immediate action. So there should be nothing to report for a couple of weeks. No news is good news.

1 January 2012 - Appointment for a scan

I wonder what the New Year will bring?

One surprise, after our recent consultation with the oncologist, was an appointment for an MRI scan of my head, in Carlisle Infirmary next Thursday. At 08:30am! Not quite sure how we are going to get there at that time in the morning, but hopefully the hospital volunteer car service will be able to provide a car for us.

So soon we may know by other means than how I feel, how my treatment is going.