I spoke (well, wrote) too soon. Today we had to go to the GP surgery. When the taxi arrived, I found I could barely stand up. I only made it to the car with Olga's support.The doctor found me a weelchair to go out. My head was spinning and I had no balance at all. Surprising as I'd been getting better and better at the physiotherapist's balance exercises.
Olga said this was due to withdrawal symptoms from the reduced dose of steroids. She found a quarter of a dexamethasone tablet in her bag, which I took with a cup of water from the surgery's water cooler and soon began to feel a bit better. Olga remembered that I had had similar problems when I tried to give up steroids the first time. I don't remember so I had to look back in this blog to refresh my memory. I even have an itchy rash like I did back in June last year. Hopefully I won't get shingles again like I did then.
So it looks as if I'll have to keep taking a quarter of a tablet a day. It's disappointing,. My appetite has been less great and I had even begun to lose a little weight since we started reducing the steroid dosage,
9 January - Off the steroids
Today I have taken no dexamethasone (steroid.) We have been gradually reducing the dose a fraction of a tablet at a time. Hopefully I'll now be able to lose the 10kg of weight that I put on since the operation.
Also hopefully there won't be too much need for posting to this blog. I no longer feel that I have one foot in the grave. I expect I'll have cancer cells in my brain forever, but I'm at least a few paces away from the grave at this moment.
I still have to overcome the after effects of surgery: my dodgy vision and balance problems . The number of times I've had to correct typos just to write this post is a reminder that I'm not fully recovered yet. So this may not be the last post to this blog. Not just yet.
Also hopefully there won't be too much need for posting to this blog. I no longer feel that I have one foot in the grave. I expect I'll have cancer cells in my brain forever, but I'm at least a few paces away from the grave at this moment.
I still have to overcome the after effects of surgery: my dodgy vision and balance problems . The number of times I've had to correct typos just to write this post is a reminder that I'm not fully recovered yet. So this may not be the last post to this blog. Not just yet.
30 December - Good news for the New Year
Off to an appointment with the urologist this morning, to hear the result of the CT scan a few weeks ago.This was nothing to do with my brain tumour. One of my scans had showed something suspicious on a kidney, which we were afraid might be cancer. The good news was that whatever it is hasn't changed. so it probably isn't cancerous. As I haven't experienced any kidney-related problems such as blood in my urine my kidneys have been given a clean bill of health and we'll have another look in a year.
While we were there we asked the doctor if we could look at the last MRI brain scan, on which until now we had only had a verbal report.
There was nothing to see. Literally. Where the tumour had originally been there was nothing there. Definitely good news. Perhaps I could grow a few new brain cells there!
If I'm not exactly jumping for joy it's just because I'm still experiencing annoying symptoms like the blind spot in my vision, a hand tremor, the balance problem that is hampering my mobility, poor short term memory and inability to concentrate. But I'm not going to dwell on those for the moment.
So I may not have "beaten the bugger" but I've given it a jolly good thrashing. And It looks as if I'll be around for a couple of years yet. Olga and I will see in the new year with a glass of bubbly this year!
While we were there we asked the doctor if we could look at the last MRI brain scan, on which until now we had only had a verbal report.
There was nothing to see. Literally. Where the tumour had originally been there was nothing there. Definitely good news. Perhaps I could grow a few new brain cells there!
If I'm not exactly jumping for joy it's just because I'm still experiencing annoying symptoms like the blind spot in my vision, a hand tremor, the balance problem that is hampering my mobility, poor short term memory and inability to concentrate. But I'm not going to dwell on those for the moment.
So I may not have "beaten the bugger" but I've given it a jolly good thrashing. And It looks as if I'll be around for a couple of years yet. Olga and I will see in the new year with a glass of bubbly this year!
24 December - New treatment for glioblastoma tumours.
One of my followers sent me a link to an article on the BBC website about a new treatment for glioblastoma brain tumours.
It's at the clinical trial stage at the moment so it is unlikely that I could get this treatment right now. The thing with clinical trials is that to be accepted you usually have to meet a very specific set of criteria. I've probably disqualified myself by using clomipramine as an anti-cancer treatment. It also helps to live near the place where they are conducting the trials. The other thing - as the article points out - is that half the people on the trial will only receive a placebo. Personally I'd rather receive treatment than take part in a lottery.
But it is an interesting story and certainly something to talk to my oncologist about at my next consultation.
It's at the clinical trial stage at the moment so it is unlikely that I could get this treatment right now. The thing with clinical trials is that to be accepted you usually have to meet a very specific set of criteria. I've probably disqualified myself by using clomipramine as an anti-cancer treatment. It also helps to live near the place where they are conducting the trials. The other thing - as the article points out - is that half the people on the trial will only receive a placebo. Personally I'd rather receive treatment than take part in a lottery.
But it is an interesting story and certainly something to talk to my oncologist about at my next consultation.
17 December - the best Christmas present
Yesterday we called the hospital to see if we could get the results of my MRI scan. We were told that the scan needed to be discussed with doctors in Newcastle. We thought that probably wouldn't happen until the new year now so we resigned ourselves to having to be patient. But this afternoon I received a call from the consultant oncologist in Carlisle. He informed me that the result was much better. No new growth of the tumour!
As you may guess I am pretty pleased about that. The news is the best Christmas present I could have wished for.
Happy Christmas!
As you may guess I am pretty pleased about that. The news is the best Christmas present I could have wished for.
Happy Christmas!
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