28 October - A hole in my vision

I have been avoiding use of the computer ever since I returned from my operation. I have become aware of a large blind spot in my left hand side lower peripheral vision.

If I sit with my arms straight down by my sides and then raise my forearms so that they are at right angles in front  of me and flap my hands, I cannot see my left hand moving. I am not sure at the moment if it is only my left eye or my vision in general that are affected. Experiments blocking out one eye have so far been inconclusive.

Using the computer has become very frustrating. A non-touch typist, I rely on being able to look at the keyboard and I am often hitting the key to one side of the one I want. It also makes checking for typos difficult. I have trouble finding the cursor. My brain seems to try to compensate for the problem by superimposing one column of text over another. Reading is awkward for much the same reason.

I am pretty sure that this is at the root of what I have been describing as a balance problem. The problem is the blind spot on my left hand side. I tend to bump into things on my left. I don't see properly where I am putting my left foot. This makes me react as if I am going to step into a void. I am really only comfortable walking if I have something to hold on to. A walking stick helps but I prefer holding on to Olga's arm when moving, to provide a physical point of reference.

I first became aware of the problem a day or two after my operation. I mentioned it to a couple of doctors who came to see me. One commented that perhaps they had nicked the optic nerve. Since then I have had one period of clear vision. I did have similar problems after my first brain tumour removal operation and they did get better after several weeks so perhaps this will clear up by itself.

The doctors have all told me that I have done very well surviving a GBM4 tumour by more than two years. I get the feeling that I should be thankful for what I have got instead of carping about what I haven't. As I am never likely to get my driving licence back with this type of tumour this disability does not have much impediment on what I can do at the moment.

17 October - A question of balance

It's good to be home. I must go on record to say how pleased I was the treatment I received at the Royal Victoria Infirmary in Newcastle. I could not have been looked after better.Our British National Health Service is the best healthcare system in the world. I wish that some of my American friends who are so strongly opposed to the idea of having a similar system over there could experience it (without having a brain tumour, obviously. :)

My operation was successful. The doctors told me they operated using a microscope and removed all of the brain tumour that they could see.  I don't think that means I no longer have the tumour.There is still a part of it inside my brain which could grow back eventually. But hopefully this will give me a few more years when I will be able to enjoy a normal life.

One thing that puzzles me is why I don't feel better than I do at the moment. My sense of balance is worse than it was before the operation. I have to be very careful not to lose my balance when I move about the house. My vision is not as sharp as it was either,. I am using the computer quite well at the moment which is an improvement but typing is still a bit more error-prone than it was..

I remember after the first operation it took several weeks for my vision to stabilize. So I guess I may just have to be patient. I have another appointment with the doctors next week so we'll see then what they have to say about it.

10 Oct

Op. successful. All went well. Postiing under difficulty. No 3G data signal from hospital.

3 October - Surgery again

Just a quick update on what is going to happen. The team at Newcastle have decided that the best course of action for me is more brain surgery to remove as much as possible of the tumour. We did raise the issue of other kinds of treatment but it turns out that they would not be appropriate for the type of tumour I have. ("Cyber knife" was mentioned but is not possible because my tumour doesn't have clearly defined boundaries.)

So the plan - as always subject to change subject to bed and theatre availability - is for me to go over next Tuesday (8th October) to the Royal Victoria Infirmary in Newcastle (where I had brain surgery before). Hopefully I will be on the surgeon's list for Wednesday 9th.

I can't say that I am looking forward to it but there don't seem to be many other choices. The first time, when the tumour was first spotted, everything happened so quickly that I didn't have time to think about it much. I just have to hope that it all goes as well as it did the first time and I'll be back recovering from the op by next weekend.

Wish me luck!

2 October - A doctor calls

Had a phone call from a doctor this afternoon. My case has been discussed at the multi disciplinary meeting. The cancer has grown: it is now 3 cm. It seems they are going to do something about it. A doctor from the Newcastle hospital will phone tomorrow with more details of the treatment options. Olga thought he mentioned the possibility of going in to hospital next week. So we are now waiting anxiously for the phone to ring.