An appointment with our GP today. For the last few weeks I have been bothered by a fungal infection causing patches of dry, itchy, scabby skin around both my ankles. It is probably the result of my immune system being weakened. I saw the doc a couple of weeks ago and she prescribed a steroid-based ointment which had no effect at all. Now I have been given a different ointment to try which I hope will be more effective.
The GP asked how my walking was coming on. I told her that I was fine walking on level ground with my eyes focused straight ahead but that I still tended to lose my balance if I turned my head, for example to look over my shoulder or down at my feet if I had to negotiate uneven ground or dodge around pets or small children.
The doc got me to close my eyes, extend one arm and try to touch the tip of my nose. I did this with both arms and then repeated it. Each time, I missed my nose by a couple of inches. The doc said that she is not a neurologist but she thinks that the part of my brain that deals with balance has been damaged and so I am keeping my balance using my vision mainly. She doesn't think that the lost ability will come back - my brain is just learning a new way of dealing with it.
One day I will have to see if I can still ride my bike. I have ridden it down the road and back one time since my brain surgery - but that was probably before I started the radiotherapy.
6 September - Less than 89 kilos
Another four weeks with nothing much to report. I'm feeling pretty well. People who see me in person or who saw the picture taken on our 10th wedding anniversary tell me I look very healthy. So I must be.
My weight this morning was 89.2kg. It has gone below 90kg and stayed below 90kg for the last 4 or 5 days. So I'm almost down to the weight I was before I went into hospital and have achieved my goal of getting down to 89 kilos.
I feel perfectly normal when I'm at home doing nothing much. It's only when I try to do something more physically or intellectually challenging that what I believe to be the long-term effects of the radiotherapy make themselves felt. I now have a very poor short-term memory. And walking further than into town and back or to the park feels like quite hard work.
I have been walking without a stick but still have moments when I feel I am going to fall over. The doctors don't seem to have anything to say about this. Our GP said it might be one of those things that I will just have to live with. One day I will try and see if I can still ride my bike. I did ride it once since my brain surgery - just down to the end of the cul de sac and back. But then I didn't have these giddy spells - though they only happen when I'm standing up.
I feel as if I could drive a car if only I was allowed to. I have written to the DVLA to ask what I have to do to get my driving licence back. I'm still awaiting a reply to that. It's been more than a year now and I have never - touch wood -had any seizures or fits. But the GP said I might have to wait two years before I can get it back.
Now that I'm feeling so much better the inability to drive is making me increasingly frustrated. Olga is still having lessons, but I'm not yet willing to bet on which of us gets our driving licence first!
My weight this morning was 89.2kg. It has gone below 90kg and stayed below 90kg for the last 4 or 5 days. So I'm almost down to the weight I was before I went into hospital and have achieved my goal of getting down to 89 kilos.
I feel perfectly normal when I'm at home doing nothing much. It's only when I try to do something more physically or intellectually challenging that what I believe to be the long-term effects of the radiotherapy make themselves felt. I now have a very poor short-term memory. And walking further than into town and back or to the park feels like quite hard work.
I have been walking without a stick but still have moments when I feel I am going to fall over. The doctors don't seem to have anything to say about this. Our GP said it might be one of those things that I will just have to live with. One day I will try and see if I can still ride my bike. I did ride it once since my brain surgery - just down to the end of the cul de sac and back. But then I didn't have these giddy spells - though they only happen when I'm standing up.
I feel as if I could drive a car if only I was allowed to. I have written to the DVLA to ask what I have to do to get my driving licence back. I'm still awaiting a reply to that. It's been more than a year now and I have never - touch wood -had any seizures or fits. But the GP said I might have to wait two years before I can get it back.
Now that I'm feeling so much better the inability to drive is making me increasingly frustrated. Olga is still having lessons, but I'm not yet willing to bet on which of us gets our driving licence first!
9 August - Feeling better
Has it really been more than a month since I last posted here? I know I said that "no news is good news" but several followers commented that they would like to continue receiving news about how I am getting on. So here's an update.
Today we made the return trip to Carlisle to keep an appointment with the oncologist. We learned nothing new. He asked how I was, I told him I was feeling fine considering, so we received a new appointment to see him in three months' time.
In truth, I'm feeling better than I have at any time since the treatment of my brain tumour began. In fact there are times when I completely forget that I'm ill at all, never mind have a terminal illness.
I'm not back to my original fitness though. I tire more easily than I did before and I don't think I could climb much of a hill, though I'm starting to venture further afield. I still get bouts of vertigo that make me sometimes nearly lose my balance when I am walking, and cause me to use both hands on both rails when coming down the stairs.
I have lost most of the excess weight I had gained whilst I was on steroids: I'm down to 91kg now and I had been over 100kg. That makes me feel better too. I still have the goal of getting down to 89 kilos which was what I was BT (before tumour.)
The one thing that disappointed us is that I was not given a date for a new MRI scan. The doctor said that as I'm not having headaches, vomiting or seizures and am feeling fine there is no reason to have a scan. But I'd prefer it if we could keep an eye on things. A glioblastoma multiforme grade 4 is considered incurable. So I believe that there is still some tumour left and expect that one day it will grow back again. I'd rather find out when this happens before I start experiencing headaches, fits and vomiting.
I don't really want to live with a time bomb in my head and have no idea what the fuse is set for.
Today we made the return trip to Carlisle to keep an appointment with the oncologist. We learned nothing new. He asked how I was, I told him I was feeling fine considering, so we received a new appointment to see him in three months' time.
In truth, I'm feeling better than I have at any time since the treatment of my brain tumour began. In fact there are times when I completely forget that I'm ill at all, never mind have a terminal illness.
I'm not back to my original fitness though. I tire more easily than I did before and I don't think I could climb much of a hill, though I'm starting to venture further afield. I still get bouts of vertigo that make me sometimes nearly lose my balance when I am walking, and cause me to use both hands on both rails when coming down the stairs.
I have lost most of the excess weight I had gained whilst I was on steroids: I'm down to 91kg now and I had been over 100kg. That makes me feel better too. I still have the goal of getting down to 89 kilos which was what I was BT (before tumour.)
The one thing that disappointed us is that I was not given a date for a new MRI scan. The doctor said that as I'm not having headaches, vomiting or seizures and am feeling fine there is no reason to have a scan. But I'd prefer it if we could keep an eye on things. A glioblastoma multiforme grade 4 is considered incurable. So I believe that there is still some tumour left and expect that one day it will grow back again. I'd rather find out when this happens before I start experiencing headaches, fits and vomiting.
I don't really want to live with a time bomb in my head and have no idea what the fuse is set for.
7 July - Losing weight
I think this blog is reaching the point at which no news should be assumed to mean good news. The treatment to hold back my incurable brain tumour has been completed and we are now in "wait and see" mode. I think we would all get bored of daily or weekly updates just to say "hello, I'm still here."
My weight, which has caused me some consternation as it topped 100kg, is now down to 94.4kg and decreasing at a rate of a couple of hundred grams a day (sorry, I gave up pounds and stones several years ago.) To what extent this is due to the diuretic tablets proscribed by our GP, or giving up cakes and desserts I don't know. but while it continues to work I'm sticking at it. Moving around is now a lot more comfortable and I can once again see the bones in my feet.
I still have to overcome one problem which has plagued me ever since the treatment started and that is my loss of balance and the vertiginous feeling when I have to descend stairs. Our GP warned that there may not be anything that can be done about that. I hope it will just wear off. Until it does I won't feel confident enough to leave behind my walking stick or go out without Olga's reassuring presence.
Olga and I have been discussing what improvements we can make to our home to make things easier for me when my mobility becomes limited (as it almost certainly will judging by the experiences of other brain tumour victims.) We had a meeting with a lady from Social Services who told us they can fit a rail on the opposite side of the stairs of the stairs so I can descend hanging on with both hands, which will help with my vertigo. They also offer such things as raised toilet seats to make it easier to get off the pot, and can loan us a lift to help getting in and out of the bath. That would prevent potentially embarrassing incidents such as occurred a month ago when I couldn't get out of the bath.
That's all for now and hopefully for a while or at least until I experience major improvements in my fitness.
My weight, which has caused me some consternation as it topped 100kg, is now down to 94.4kg and decreasing at a rate of a couple of hundred grams a day (sorry, I gave up pounds and stones several years ago.) To what extent this is due to the diuretic tablets proscribed by our GP, or giving up cakes and desserts I don't know. but while it continues to work I'm sticking at it. Moving around is now a lot more comfortable and I can once again see the bones in my feet.
I still have to overcome one problem which has plagued me ever since the treatment started and that is my loss of balance and the vertiginous feeling when I have to descend stairs. Our GP warned that there may not be anything that can be done about that. I hope it will just wear off. Until it does I won't feel confident enough to leave behind my walking stick or go out without Olga's reassuring presence.
Olga and I have been discussing what improvements we can make to our home to make things easier for me when my mobility becomes limited (as it almost certainly will judging by the experiences of other brain tumour victims.) We had a meeting with a lady from Social Services who told us they can fit a rail on the opposite side of the stairs of the stairs so I can descend hanging on with both hands, which will help with my vertigo. They also offer such things as raised toilet seats to make it easier to get off the pot, and can loan us a lift to help getting in and out of the bath. That would prevent potentially embarrassing incidents such as occurred a month ago when I couldn't get out of the bath.
That's all for now and hopefully for a while or at least until I experience major improvements in my fitness.
26 June - One year on
Another milestone passed. This is the day the doctors said I would never see. One year ago today a doctor broke the news that I had a brain tumour, that it was incurable, and that I could expect to survive "a few months to a year."
Today we went to Newcastle, to the Royal Victoria Infirmary where I had the brain surgery, and saw the same doctor, one year later. As I anticipated, we didn't learn anything new. It was a rubber stamp exercise to put "closed" on my case as far as the surgery goes. (Carlisle will continue monitoring the tumour, of course.) It was uplifting to see the looks of genuine surprise as the doctor read through my file and saw the reports of how well I have done.
So, five hours of travelling for a five minute consultation. But I'm not going to grumble. They did a good job.If they hadn't, I really might not be here at this moment.
Today we went to Newcastle, to the Royal Victoria Infirmary where I had the brain surgery, and saw the same doctor, one year later. As I anticipated, we didn't learn anything new. It was a rubber stamp exercise to put "closed" on my case as far as the surgery goes. (Carlisle will continue monitoring the tumour, of course.) It was uplifting to see the looks of genuine surprise as the doctor read through my file and saw the reports of how well I have done.
So, five hours of travelling for a five minute consultation. But I'm not going to grumble. They did a good job.If they hadn't, I really might not be here at this moment.
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