Two posts in a week! What's going on?
I had an appointment at the Radiotherapy and Oncology department at Carlisle Infirmary today. It was a brief consultation just to check on how I am.
The good news is that I will have a new MRI scan in two months time. Then we will go up to Carlisle again to get the results. Something to look forward to in the new year! Really. I really would like to know what this tumour is doing.
I asked if I could reapply for my driving licence yet. The doctor said I would have to wait until after the scan, as there is not enough information to go on at the moment. That would really be something if I could get my licence back early next year!
While we were waiting for our transport back home one of the nurses approached me and asked if I would mind taking part in a research project they are working on to try to find out if there is a gene that is associated with cancer or particular types of cancer. Of course I agreed. I owe such a lot to the doctors, nurses and especially the cancer researchers who are advancing our knowledge of this disease that I am glad to help in any way I can.
13 November - Gallstones
No news is good news. For the last couple of months life has been getting back to normal - or at least as near normal as it is possible to be without having a car. Sorry to harp on about this but if you have never been forced to live without a car - assuming you don't live in a city where there is public transport - then you cannot know just how limiting it is, and I hope you never have to.
I learned this morning that I have gallstones. A blood test had shown a raised level that indicated a possible liver problem. I went for an ultrasound scan last week and the GP got the results this morning. My liver is fine but the scan showed the gallstones. Apparently the best course of action is to do nothing and hope that they don't cause any problems because treatment involves quite a big operation.
I have an appointment to see the oncologist in a couple of days' time. I'm not expecting to learn anything new as I haven't had any tests. Olga and I are hoping that I will get an appointment for an MRI scan as we would like to know what the tumour is doing.
I learned this morning that I have gallstones. A blood test had shown a raised level that indicated a possible liver problem. I went for an ultrasound scan last week and the GP got the results this morning. My liver is fine but the scan showed the gallstones. Apparently the best course of action is to do nothing and hope that they don't cause any problems because treatment involves quite a big operation.
I have an appointment to see the oncologist in a couple of days' time. I'm not expecting to learn anything new as I haven't had any tests. Olga and I are hoping that I will get an appointment for an MRI scan as we would like to know what the tumour is doing.
20 September - Doctor appointment
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.
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.
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