27 September - MRI results

GP appointment this morning, and the results of my MRI scan are in. My tumour has increased in size since January but the more accurate MRI scan gives a better picture of what has happened. There is a lot of swelling (oedema) in the area of the tumour which makes it look bigger than it is. This is quite common with brain tumours, apparently. The brain does not have an effective way to get rid of dead tumour cells. So some of the apparent increase could be a result of the treatment.

I was impressed with the IT systems that our NHS has and the way it allows all the doctors involved - including our GP - to be kept up to date on what is happening. My case is going to be discussed by a multi-disciplinary team (MDT) consisting of neurologist, oncologist, surgeon and anyone else who might have an input to it, from 3 different hospitals. It appears that this is due to happen some time at the beginning of October. Until then we just have to be patient.

In the meantime I will carry on with the steroids. I'm quite happy with the way I'm feeling at the moment. Even the taxi driver taking us to the surgery said I'm looking well. Apart from the balance problem whilst walking - which discourages me from taking much exercise - I think I'm doing quite well. I am becoming a bit of a couch potato and spend most of my time sitting in my recliner listening to classical music via internet radio. It could be a lot worse.

For the time being I've given up hope of ever having my driving licence reinstated. Olga has given up driving lessons as well. She was finding learning to drive too stressful on top of worrying about my health. Sometimes she didn't sleep at night and then had to try to drive in the morning. So I think we'll just have to stay a no-car family. The thing to be thankful for is that I still have mobility - even if not perfect mobility - on my own two feet.

18 September - MRI scan

To the hospital in Carlisle this afternoon for the long-awaited MRI scan of my brain. Half an hour of listening to clonks and buzzes from the scanner.

I'm told that the results will get back to the requesting doctor in about a week.So it will be several more days of anxious waiting before I find out what the next steps will be.

In the meantime I'm quite comfortable on 8mg of dexamethasone steroids. But Olga is worried about my right eye which is very red. That's the same side as my tumour. Coincidence or not? Steroids and clomipramine can both cause increased pressure in the eyes, apparently. If it isn't one thing, it's another.

12 September - bad news

Just got back from the GP surgery to hear about my CT scan result. It was not what we wanted to hear.

My tumour has increased in size. It has approximately doubled in length since January.

The news is not entirely unexpected given the symptoms I have been experiencing. But it's a bit of a shock to hear it confirmed nevertheless. The last couple of years have lulled me into a sense of feeling that things could just go on as they are now, long into the future.Today is a reminder that this isn't over yet.

What happens next? We don't know. We will have to wait and see. The GP will alert my other doctors about the change in my status. But until they decide on a course of action we can only speculate.

4 September - Return from London

Just returned from a very nice break in London. Considering that at one point I felt so poorly that I doubted whether I would be able to go, The trip went without problems. The dexomethasone steroids made me feel a lot better. My balance improved but only by a little. We took advantage of disabled facilities to borrow a wheelchair in most of the places we visited. I was a bit reluctant to do this at first as I was aware that none of the people I know of who began using a wheelchair are still here today, but it did make things easier.

At the Victoria and Albert Museum
Whilst we were away we received an appointment at the hospital for a scan tomorrow afternoon (Thursday.). This is for a CT scan not the MRI scan we were expecting.Ours is no to reason why. As long as it shows what it needs to.