Happiness

Forgive me if this posting seeks a little self-indulgent. Also excuse any errors. I come off chemo today, and am not firing on 100% yet.

On September 11th 2008, when I was diagnosed with this brain tumour, my life changed utterly. I was extremely happy with life and "my lot" up to this point. But then on, I realised I would have to be "happy" with a lot less. The "happy" benchmark is a lot lower than it was eight months ago. Nevertheless, there are enough happy moments.

I do make myself get out and do things even though I feel like staying in bed. Thank God I made us go to the pub yesterday lunchtime - a real effort. The Beer Festival was an effort; the Rare Breeds Farm ditto. But if I do not, then the "happy" benchmark will not be reached! There is no point in being home and miserable all the time.

The other upshot of the tumour is stress. Up till then, I was stressed out with my first of year teaching. I know from those who were on the same course as I was how incredibly stressful this is. Well, my stress just went. I realised pretty soon that I would not be teaching for months, years, or even ever. And yes, this was a relief. Despite my health problems, I suffer little stress. Those around me, however, suffer much greater stress. Pity them.

One of the most frustrating this about the tumour is that it affects the brain. I think my brain functions at about 90%, but it can't get things across all the time. I just lose vocabularly when tired. Words like "doctor", "animal", "bulb" etc. It makes me come across as an idiot. That I hate. I am not stupid, or drunk - I just sometimes have trouble speaking when tired. At least this seems to be getting better, as for a while I could not remember the words "operation" or "tumour", which made it a bit hard explaining what I had been through.

I would like to be doing serious writing, but this is not possible. There is not enough of my brain functioning. So the blog will have to do.

Anyway, enough of this ramble.

Mission accomplished...

A very pleasant Beer Festival, and the Sarah Hughes duly found. First time I had had it in 15 years.

My chemo started on Friday, so thank goodness I went to the went festival on Thursday. I could not have stomached them together - chemo and real ale - but I would not let it curtail enjoyment of my weekend, and we went to to stay with some very hospitable and kind hosts on the south coast. Thank you!

However, the chemo does seem rather harsh, so I expect the coming days will provide me with plenty of sleep. Since the news appears to be about Gordon Brown (will he / won't he stay?) and swine fever (tabloid heaven), I will not be missing out on much.

NHS Priorites

I have been on the receiving end of rather a lot of generous NHS these last seven months. An operation, radiotherapy and chemotherapy, countless visits to the doctor and now weekly visits to a centre - where I get a free lunch!

But it has not been enough. I have been told that the last chemotherapy was working. I am back where I was when it was diagnosed. Now there are new forms of chemotherapy, not yet approved, which may be approved in the next year or so. May be too late for me. May not work for me anyway. I could fund the treatment myself and it could be a complete waste of money.

Yesterday, there were scaremongering stories about cuts in NHS funding. I can't believe they would start charging for what is free now. But it is must be tricky in deciding what gets funding. And who gets funding. I happen to believe that a 38 year old, such as my dear self, with two children deserves all, but then, as Mandy Rice Davies said "he would say that, wouldn't he".

Can we carry on funding treatment via the (in my case) NHS?

Anyway, roll on Friday... NHS treatment, new (to me) form of chemotherapy, and I don't pay a penny. Meanwhile, there are those who can't get the treatment they want - who go without, or pay.

Must keep life normal...

I try to keep life as normal as possible. OK, so I don't work. But I try to do a bit of housework. I don't drive but I potter to nearest shops, 10 minutes walk away. This exhausts me. I end up having to go to bed two or three times a times a day.

Yesterday, we went to Henley where I bought two hats to protect my head. My hair is growing in patches. I have none in some patches, and no sign of it. Some areas it is thick, and never really went. And in some areas, it is poking through the scalp as if for the first time. You could describe it as baby-like. These bits include the scar from the operation - now 7 months back - all 55 stitches of itch. This area can be painful - a bit like teething, as the hair has to come up all the way from its root. I wonder if a baby finds "hairing" sore. I am also concerned every time I get a headache or swelling of the scalp - it could be another fit. Still, not had a fit since Maundy Thursday - touch wood!

Now, what is "normal"? An outing. Beale Park Zoo this afternoon. And I plan on Thursday, Reading Beer Festival. However, it is now 10.20am - time for a nap before elevenses!

State of play...

I thought it was time I put occasional updates on my current state of health on here. For those who don't know, I have a brain tumour, which is no picnic.

I am no better than when I had half of it removed last September. The recent scan clearly showed that, despite lots of chemotherapy and radiotherapy since, things are deteriorating. But without said treatment, I would be probably dead already!

Yesterday, I was told the ongoing chemotherapy was "not working". So will be moving on the different (older) one. Disappointing, but life must go on.

In my case, the tumour is on the left hand side, which affects mathematical ability, literacy, and speech - I really search for some words. Sometimes, after a seizure (fit, they used to call them), I cannot read, write or speak for a couple of days. And my right hand is almost paralysed.

This sounds bad, but fortunately I am left handed. And if the other side of brain was affected, apparently, my personality would be affected, as might memory. I don't think it is, thank goodness!

Now, talking of personality - where is my beer?

It has been a while

It has been over two months since anything new appeared here. Well, since no-one knows about this blog this does not matter.

The treatment has been rotten, and the seizures foul. I lost speech for 3 days following one seizure, could not write, could not read, and could not understand TV. I had a totally different soundtrack to TV, and would totally mishear people too. Back to "normal" - just slow...

It is a bit of limbo, even when I get my scan results. But, prospects are better than 5 years ago, when there was no chance of living more a year. The treatment is so new that the doctors cannot say much - the data is not there.

The beginning....

You have to start somewhere with a blog. But I don't really know where. Or what I will blog on.

Perhaps a cheery mix of politics, my own tastes - books, music and drinks, for example - and stories of chemotherapy, radiotherapy and neurosurgery. I'm undecided.