This problem I have with my balance seems to be getting worse and worse. Olga and I have arranged a trip away in London and it has got to the stage where I'm doubting my ability to go.I am aso expeiencing difficulty typing on the computer. Inless I cencentrate really hard, everything omes out as alphabet soup. This post willbe brief as a result.
I have become convinced that my tumour is regrowing.We phoned the hospital to see if we caqn get my next MRI scan expedited but were told that the only person who can make that happen is my GP, so off to the surgery we go.
The GP says that the symptoms I am experiencing could well be caused by my tumour. She prescribes some of my old friends - dexamethasone steroids - and some other tablets to increase blood supply to the brain. She promises to contact the hospital and try to get me an MRI scan as soon as possible. But it's a bank holiday weekend so it's anyone's guess how soon that will be. Meantime we return home and I have a sleepless night mulling over the implications of this new development.
19 August - Taking a tumble
Life goes on with nothing particularly noteworthy to write about. The unsteadiness on my feet that I have often complained about continues to be a concern. I don't go anywhere without a walking stick or without Olga. I often take her hand to steady myself. We must look like a couple of newly-weds walking along the street hand in hand!
Yesterday I went down to the bottom of the garden to reset the weather station which had stopped working. When I got there I realised I would need a blunt object to poke the reset button. I turned around to go back for it and found myself falling to my right. I put my foot out to save myself but I tripped over the border to the raised bed. No injury was caused other than to a few plants which cushioned my fall, and my pride of course.
We are booked to spend a few days in London the weekend after next so I hope I can keep my feet then.Olga wants to see the state rooms at Buckingham Palace and has arranged a wheelchair for me for the visit. Having to use a wheelchair feels to me like the thin end of the wedge and I tried to resist the idea but I find it tiring standing around and the sweat runs down my back with the effort of keeping upright so it is probably the most practical solution. No doubt the Royal Albert Hall will also present some challenges!
I am a little concerned that this balance problem might be a sign that my tumour is growing again. Olga found several possible links between radiotherapy and balance issues and vertigo. Really I should be getting this information from my doctors. I would like another MRI scan soon to put my mind at rest about what is happening to my brain. But my next doctor's appointment is not until October so I'm unlikely to receive another scan much before then.
Yesterday I went down to the bottom of the garden to reset the weather station which had stopped working. When I got there I realised I would need a blunt object to poke the reset button. I turned around to go back for it and found myself falling to my right. I put my foot out to save myself but I tripped over the border to the raised bed. No injury was caused other than to a few plants which cushioned my fall, and my pride of course.
We are booked to spend a few days in London the weekend after next so I hope I can keep my feet then.Olga wants to see the state rooms at Buckingham Palace and has arranged a wheelchair for me for the visit. Having to use a wheelchair feels to me like the thin end of the wedge and I tried to resist the idea but I find it tiring standing around and the sweat runs down my back with the effort of keeping upright so it is probably the most practical solution. No doubt the Royal Albert Hall will also present some challenges!
I am a little concerned that this balance problem might be a sign that my tumour is growing again. Olga found several possible links between radiotherapy and balance issues and vertigo. Really I should be getting this information from my doctors. I would like another MRI scan soon to put my mind at rest about what is happening to my brain. But my next doctor's appointment is not until October so I'm unlikely to receive another scan much before then.
1 August - No progress
Today we received a reply from the DVLA about my driving licence application. The letter said that they could not progress this because they were still waiting for a reply from my consultant. This did not entirely surprise me as the doctor we saw a couple of weeks ago had told us there was no reply on my file. I would be very angry if I thought that would achieve anything besides raising my blood pressure.
We telephoned the consultant's secretary who told us that they had received a reminder. So DVLA are doing their job, it's the doctors that are the problem. There is not much we can do other than phone every couple of days until they get fed up with hearing from us.
This is so annoying. I don't have time to waste on unnecessary delays. My life is on hold until I get a decision.
We telephoned the consultant's secretary who told us that they had received a reminder. So DVLA are doing their job, it's the doctors that are the problem. There is not much we can do other than phone every couple of days until they get fed up with hearing from us.
This is so annoying. I don't have time to waste on unnecessary delays. My life is on hold until I get a decision.
16 July - Disheartening news
Went for my tri-monthly review with my consultant doctor today. After waiting more than an hour past our appointment time we were ushered in to see another doctor whom we had not seen before.
I didn't expect to learn anything new about my condition because I had not had any scans or tests since my previous visit. So we ran through the usual: any headaches, any seizures and so on.
I mentioned that I was applying to have my driving licence back and that they should have received a letter from the DVLA. He confirmed from my file that a letter had been received, but informed me that my consultant had not replied to it yet. That was the first bit of bad news. I have been waiting expectantly for the post every day hoping that it would bring news of my application. And based on how I feel, I was
beginning to expect the answer would be favourable.
But then the doctor dropped a bombshell. "Frankly" he said "I would not expect them to grant you your licence back because of the type of tumour you have got." I have got a Glioblastoma Multiforme Grade 4 (GBM4) which is incurable. Therefore, regardless of how well I feel now, I will never be rid of it and there is always the chance, the expectation even, that it will eventually grow back.
If I started having headaches or seizures then they would put me on steroids again. Any regrowth could be treated with surgery to remove it or chemotherapy to try and control it (though not more radiotherapy as I have already had the full dose.) So it would not be the end of the road as far as treatment is concerned. But no matter how long I survive it seems likely that I will never drive again
Of course, this is only one doctor's opinion. It is up to the DVLA's panel of doctors to decide. But I am trying to be a realist. If one medical specialist feels that way then it is likely that others will too. So I am feeling rather down at the moment. Being able to drive is an essential part of being able to live life as I want to live it. The only salvation would be for Olga to pass her test. No pressure, then.
I didn't expect to learn anything new about my condition because I had not had any scans or tests since my previous visit. So we ran through the usual: any headaches, any seizures and so on.
I mentioned that I was applying to have my driving licence back and that they should have received a letter from the DVLA. He confirmed from my file that a letter had been received, but informed me that my consultant had not replied to it yet. That was the first bit of bad news. I have been waiting expectantly for the post every day hoping that it would bring news of my application. And based on how I feel, I was
beginning to expect the answer would be favourable.
But then the doctor dropped a bombshell. "Frankly" he said "I would not expect them to grant you your licence back because of the type of tumour you have got." I have got a Glioblastoma Multiforme Grade 4 (GBM4) which is incurable. Therefore, regardless of how well I feel now, I will never be rid of it and there is always the chance, the expectation even, that it will eventually grow back.
If I started having headaches or seizures then they would put me on steroids again. Any regrowth could be treated with surgery to remove it or chemotherapy to try and control it (though not more radiotherapy as I have already had the full dose.) So it would not be the end of the road as far as treatment is concerned. But no matter how long I survive it seems likely that I will never drive again
Of course, this is only one doctor's opinion. It is up to the DVLA's panel of doctors to decide. But I am trying to be a realist. If one medical specialist feels that way then it is likely that others will too. So I am feeling rather down at the moment. Being able to drive is an essential part of being able to live life as I want to live it. The only salvation would be for Olga to pass her test. No pressure, then.
18 June - Gall bladder out
Just returned from Carlisle where I had my gall bladder operation. All went well, there were no complications. Not feeling any pain, just a little tenderness in the area of the wounds where they went in to do the keyhole surgery.
I'm supposed now to take things easy for a few weeks, and to stay off fatty foods for a few months.
Glad this is behind me now, and I can get back to beating cancer.
I'm supposed now to take things easy for a few weeks, and to stay off fatty foods for a few months.
Glad this is behind me now, and I can get back to beating cancer.
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