Yesterday our GP called with the welcome news that between my last two scans there had not been any change. No growth. We will still receive visits from carers. We will have to change to a cheaper care agency. From there on we would have to pay for visits of carers, I will still need daily visits because I will be bed bound 24 hours a day.
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Showing posts with label Recovery. Show all posts
Showing posts with label Recovery. Show all posts
20 March Falling down
neOne of the things the oncologist mentionedto us was one of the side effects of dexamethasone is making bones brittleso he advised us to not to do anything that had a risk of falling and causing a fracture. We were trying to reduce the dose of steroid. I had taken 2.5mg, I noticed my vision was a bit more out of focus than usual and I felt a bit unstedy on my feet. So I fell down on the sitting room carpet.Olga had to go snd get a helpful neighbor to help me get to my feet - at 100kg I'm too heavy for her to lift! \ortunately no harm done.
Oncologist said there is no set dose of dex that is right for everybody as everyone is different. so I have to decide what is the right dose for me. looks like 2.5 mg is not enough for me
apologies for the typos and lackof punctuationI am still struggling with the computer. someone has suggested voice activationsoftware but i don't know of any. my laguage tends to get a bit bluewhe n using the computer do i'm not sure it would be s good idea!
Oncologist said there is no set dose of dex that is right for everybody as everyone is different. so I have to decide what is the right dose for me. looks like 2.5 mg is not enough for me
apologies for the typos and lackof punctuationI am still struggling with the computer. someone has suggested voice activationsoftware but i don't know of any. my laguage tends to get a bit bluewhe n using the computer do i'm not sure it would be s good idea!
17 March - As good as it gets?
Hospital appointment to see the consultant today.
I am almost completely disabled now. I can barely walk at all. It was a struggle to get between the car and the door. It is not for lack of strength.My balance is so poor that I can barely stand unsupported.I think this is partly a balance issue and due to the problems with my vision which is unstable and confused. so it feels as if myhead is spinning. All those years in my youth when I was a freelance beer tester have not helped me cope with this at all.
. I apologize for the typos but using the keyboard is now almost impossible, as is any kind of work that involves handling small parts. SoI cannot do most the activities with which I used to pass the time when I was well. It is very frustrating.
I asked the doc why I had these issues when the operation to remove the tumour had apparently been.a success. He opined that my brain had been damaged, which is not reparable, so I should not expect much improvement in these areas. So In other words how I am now is as good as it is going to get. He said that I wasdoing well having survived the tumour for three and a half years. So I auppose I should quit complaining and justbe happy I am not dead. Looking across at theLakeland fells I felt very sad. I had dreamed of having a few years of retirementgoing for walks in this beautiful area. It is never going to happen
Tohelp me get around at home we ordered a Rollator fromCareCo We have purchased several items from htis site and have been impressed with the valu e for money snd fast shipping.
With the consultant 's blessing we are going to hsve another try to reduce my steroid dose to zero, Steroids have too many bad side effects.
I am almost completely disabled now. I can barely walk at all. It was a struggle to get between the car and the door. It is not for lack of strength.My balance is so poor that I can barely stand unsupported.I think this is partly a balance issue and due to the problems with my vision which is unstable and confused. so it feels as if myhead is spinning. All those years in my youth when I was a freelance beer tester have not helped me cope with this at all.
. I apologize for the typos but using the keyboard is now almost impossible, as is any kind of work that involves handling small parts. SoI cannot do most the activities with which I used to pass the time when I was well. It is very frustrating.
I asked the doc why I had these issues when the operation to remove the tumour had apparently been.a success. He opined that my brain had been damaged, which is not reparable, so I should not expect much improvement in these areas. So In other words how I am now is as good as it is going to get. He said that I wasdoing well having survived the tumour for three and a half years. So I auppose I should quit complaining and justbe happy I am not dead. Looking across at theLakeland fells I felt very sad. I had dreamed of having a few years of retirementgoing for walks in this beautiful area. It is never going to happen
With the consultant 's blessing we are going to hsve another try to reduce my steroid dose to zero, Steroids have too many bad side effects.
10 FebruaryTyping tripe
I'm finding using the keyboard impossibly difficult right now. I'm not a touch typist so I look at the keyboard a s I typeand he keys are not where they appear to be, My left hand does not seem to be my hand at all.
I have to spend a lot of timecorrecting those errors I happen to notice It's incredibly frustrating. Another example of the same issue: When I switch a light on I find I'm pressing on the faceplate justbelow the switch rocker.If I try to pick a biscuit off a plate of biscuits my hand can't feel the biscuitsthere because imy hand isn't anywhere near them.
When I press a key on the computerkeyboard I find 've pressed one of the nearby one. if I try to type capital I I get controll-I (switch to italics)which has just happened here. I can use the mouse OK though, but I often lose the cursor. Typing is impossible in these conditions. It h has taken more than half an hour to type this short post. and correct the errors I found.
I have to spend a lot of timecorrecting those errors I happen to notice It's incredibly frustrating. Another example of the same issue: When I switch a light on I find I'm pressing on the faceplate justbelow the switch rocker.If I try to pick a biscuit off a plate of biscuits my hand can't feel the biscuitsthere because imy hand isn't anywhere near them.
When I press a key on the computerkeyboard I find 've pressed one of the nearby one. if I try to type capital I I get controll-I (switch to italics)which has just happened here. I can use the mouse OK though, but I often lose the cursor. Typing is impossible in these conditions. It h has taken more than half an hour to type this short post. and correct the errors I found.
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.
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!
7 November - A referral
Received a letter today informing me that I have been referred to a neurological physiotherapist for assessment. I have no idea what a neurological physiotherapist does or why I might need one. Google suggests it is something a stroke victim might need to regain the use of some function. Arms and legs all working here. I wish my brain was, but you can't have everything.
No doubt all will become clear once I get to meet them.
No doubt all will become clear once I get to meet them.
3 November - Brainless
It has been a few weeks since the operation to remove my brain tumour and I'm wondering whether the surgeons threw away the wrong part! Trying to make what should have been a simple modification to a program listing, my brain could not figure out what to do at all. Added to the difficulties caused by my patchy vision and I had to give it up as a bad job. It's very frustrating. I've always tinkered about with programming to make things work the way I want them to, and having to settle for the status quo is hard.
My vision is just about adequate for normal purposes - I just spotted a sparrowhawk in thr hedge at the end of the garden so it's not that bad.. But a tendency to double vision and overlaying one line of text to another makes typing and proof reading text difficult. Please excuse typos and spelling errors - I just don't spot them any more.
My vision is just about adequate for normal purposes - I just spotted a sparrowhawk in thr hedge at the end of the garden so it's not that bad.. But a tendency to double vision and overlaying one line of text to another makes typing and proof reading text difficult. Please excuse typos and spelling errors - I just don't spot them any more.
28 October - A hole in my vision
I have been avoiding use of the computer ever since I returned from my operation. I have become aware of a large blind spot in my left hand side lower peripheral vision.
If I sit with my arms straight down by my sides and then raise my forearms so that they are at right angles in front of me and flap my hands, I cannot see my left hand moving. I am not sure at the moment if it is only my left eye or my vision in general that are affected. Experiments blocking out one eye have so far been inconclusive.
Using the computer has become very frustrating. A non-touch typist, I rely on being able to look at the keyboard and I am often hitting the key to one side of the one I want. It also makes checking for typos difficult. I have trouble finding the cursor. My brain seems to try to compensate for the problem by superimposing one column of text over another. Reading is awkward for much the same reason.
I am pretty sure that this is at the root of what I have been describing as a balance problem. The problem is the blind spot on my left hand side. I tend to bump into things on my left. I don't see properly where I am putting my left foot. This makes me react as if I am going to step into a void. I am really only comfortable walking if I have something to hold on to. A walking stick helps but I prefer holding on to Olga's arm when moving, to provide a physical point of reference.
I first became aware of the problem a day or two after my operation. I mentioned it to a couple of doctors who came to see me. One commented that perhaps they had nicked the optic nerve. Since then I have had one period of clear vision. I did have similar problems after my first brain tumour removal operation and they did get better after several weeks so perhaps this will clear up by itself.
The doctors have all told me that I have done very well surviving a GBM4 tumour by more than two years. I get the feeling that I should be thankful for what I have got instead of carping about what I haven't. As I am never likely to get my driving licence back with this type of tumour this disability does not have much impediment on what I can do at the moment.
If I sit with my arms straight down by my sides and then raise my forearms so that they are at right angles in front of me and flap my hands, I cannot see my left hand moving. I am not sure at the moment if it is only my left eye or my vision in general that are affected. Experiments blocking out one eye have so far been inconclusive.
Using the computer has become very frustrating. A non-touch typist, I rely on being able to look at the keyboard and I am often hitting the key to one side of the one I want. It also makes checking for typos difficult. I have trouble finding the cursor. My brain seems to try to compensate for the problem by superimposing one column of text over another. Reading is awkward for much the same reason.
I am pretty sure that this is at the root of what I have been describing as a balance problem. The problem is the blind spot on my left hand side. I tend to bump into things on my left. I don't see properly where I am putting my left foot. This makes me react as if I am going to step into a void. I am really only comfortable walking if I have something to hold on to. A walking stick helps but I prefer holding on to Olga's arm when moving, to provide a physical point of reference.
I first became aware of the problem a day or two after my operation. I mentioned it to a couple of doctors who came to see me. One commented that perhaps they had nicked the optic nerve. Since then I have had one period of clear vision. I did have similar problems after my first brain tumour removal operation and they did get better after several weeks so perhaps this will clear up by itself.
The doctors have all told me that I have done very well surviving a GBM4 tumour by more than two years. I get the feeling that I should be thankful for what I have got instead of carping about what I haven't. As I am never likely to get my driving licence back with this type of tumour this disability does not have much impediment on what I can do at the moment.
17 October - A question of balance
It's good to be home. I must go on record to say how pleased I was the treatment I received at the Royal Victoria Infirmary in Newcastle. I could not have been looked after better.Our British National Health Service is the best healthcare system in the world. I wish that some of my American friends who are so strongly opposed to the idea of having a similar system over there could experience it (without having a brain tumour, obviously. :)
My operation was successful. The doctors told me they operated using a microscope and removed all of the brain tumour that they could see. I don't think that means I no longer have the tumour.There is still a part of it inside my brain which could grow back eventually. But hopefully this will give me a few more years when I will be able to enjoy a normal life.
One thing that puzzles me is why I don't feel better than I do at the moment. My sense of balance is worse than it was before the operation. I have to be very careful not to lose my balance when I move about the house. My vision is not as sharp as it was either,. I am using the computer quite well at the moment which is an improvement but typing is still a bit more error-prone than it was..
I remember after the first operation it took several weeks for my vision to stabilize. So I guess I may just have to be patient. I have another appointment with the doctors next week so we'll see then what they have to say about it.
My operation was successful. The doctors told me they operated using a microscope and removed all of the brain tumour that they could see. I don't think that means I no longer have the tumour.There is still a part of it inside my brain which could grow back eventually. But hopefully this will give me a few more years when I will be able to enjoy a normal life.
One thing that puzzles me is why I don't feel better than I do at the moment. My sense of balance is worse than it was before the operation. I have to be very careful not to lose my balance when I move about the house. My vision is not as sharp as it was either,. I am using the computer quite well at the moment which is an improvement but typing is still a bit more error-prone than it was..
I remember after the first operation it took several weeks for my vision to stabilize. So I guess I may just have to be patient. I have another appointment with the doctors next week so we'll see then what they have to say about it.
26 May - A summit reached
On Sunday I completed a five mile walk that included one of Lakeland's lesser summits. I think I probably overdid it a bit. We did complete the last section up hill from Cockermouth town centre to home in a taxi. But despite that I am pleased with what I accomplished,
Before setting off I was anything but sure I would get all the way to the summit which is 254m high. I was surprised how well my legs felt. I certainly walked a lot slower than I used to do but I didn't find the ascent at all taxing. It was only on the final couple of hundred metres that I began to tire. The sight of the summit spurred me on until we reached it.
I should have been overjoyed at having accomplished this, my first fell walk since discovering that I had a brain tumour. But my happiness was marred by the discovery that one problem that has occurred since my treatment does not appear to be going away. My sense of balance is hopeless.
I am like a toddler who has just learned to walk but hasn't completely mastered it. Except I am rather a large toddler. Although I manage to avoid falling over with the help of my walking stick I panic when I have to negotiate uneven ground, and usually need Olga's hand for additional support. Two walking sticks might help, though I have always preferred to keep one hand free and regard an additional stick as an encumbrance.
I think I have heard others who have had brain surgery and radiotherapy mention balance problems. It may be an effect of the radiotherapy as I don't recall having a balance problem in my first weeks of recovery. I have mentioned it to my oncologist and he asks me about it but doesn't pass any further comment. I am afraid that some part of my brain has been irreparably damaged and that no matter how well my fitness may improve I will never be rid of this problem.
Before setting off I was anything but sure I would get all the way to the summit which is 254m high. I was surprised how well my legs felt. I certainly walked a lot slower than I used to do but I didn't find the ascent at all taxing. It was only on the final couple of hundred metres that I began to tire. The sight of the summit spurred me on until we reached it.
I should have been overjoyed at having accomplished this, my first fell walk since discovering that I had a brain tumour. But my happiness was marred by the discovery that one problem that has occurred since my treatment does not appear to be going away. My sense of balance is hopeless.
I am like a toddler who has just learned to walk but hasn't completely mastered it. Except I am rather a large toddler. Although I manage to avoid falling over with the help of my walking stick I panic when I have to negotiate uneven ground, and usually need Olga's hand for additional support. Two walking sticks might help, though I have always preferred to keep one hand free and regard an additional stick as an encumbrance.
I think I have heard others who have had brain surgery and radiotherapy mention balance problems. It may be an effect of the radiotherapy as I don't recall having a balance problem in my first weeks of recovery. I have mentioned it to my oncologist and he asks me about it but doesn't pass any further comment. I am afraid that some part of my brain has been irreparably damaged and that no matter how well my fitness may improve I will never be rid of this problem.
12 April - Decisions, decisions
Today we had an appointment to see the surgeon about my gall bladder operation. Actually, we saw his assistant. We arrived half an hour early for the appointment but ended up being late as the disinterested receptionist didn't bother to tell us where to wait. We waited in the hospital reception area which I thought was a bit odd. It turned out to be the wrong place.
Eventually a nurse found us. We saw the surgeon's assistant who told us that the MRI scan showed no gallstones blocking my bile duct. This was not too much of a surprise as I had felt okay on the day of the scan. It was therefore up to me whether to have the gall bladder removed or not. Given that I had experienced several recurrences of gallstone pain I opted to have it out. So I am now on the waiting list. The doctor couldn't tell us how long that would be, but I could change my mind about having the op at any time up to the day of the appointment.
But there is a complication. One of my scans to look at my gall bladder had revealed a cyst on a kidney. So I have an appointment to see another specialist at the end of May about that. (Perhaps I should worry about that as my brain tumour started off as a possible cyst.) It was suggested that we should wait until after the other consultation because it would be possible to see to both things at the same time which would avoid the need to be anesthetised twice. So I can forget about operations until after my 60th birthday, which is a bit of a relief.
My next hospital appointment is the rearranged meeting with the oncologist to discuss the plan for monitoring my brain tumour and whether I can apply to have my driving licence back.
Eventually a nurse found us. We saw the surgeon's assistant who told us that the MRI scan showed no gallstones blocking my bile duct. This was not too much of a surprise as I had felt okay on the day of the scan. It was therefore up to me whether to have the gall bladder removed or not. Given that I had experienced several recurrences of gallstone pain I opted to have it out. So I am now on the waiting list. The doctor couldn't tell us how long that would be, but I could change my mind about having the op at any time up to the day of the appointment.
But there is a complication. One of my scans to look at my gall bladder had revealed a cyst on a kidney. So I have an appointment to see another specialist at the end of May about that. (Perhaps I should worry about that as my brain tumour started off as a possible cyst.) It was suggested that we should wait until after the other consultation because it would be possible to see to both things at the same time which would avoid the need to be anesthetised twice. So I can forget about operations until after my 60th birthday, which is a bit of a relief.
My next hospital appointment is the rearranged meeting with the oncologist to discuss the plan for monitoring my brain tumour and whether I can apply to have my driving licence back.
7 April - a day trip to Blackpool
On Sunday 7 April I went for the day to Blackpool, not to be beside the seaside but to visit a radio and electronics show. The day went without a hitch - to my great relief as the night before I had experienced a mild attack of gallstone-induced back pain.
It was good to be doing something like this again. The only problem was that I am still a bit unsteady on my feet. I nearly lost my balance a couple of times. The extreme vertigo I experience means I keep well away from stairs unless there is a stout rail to hang on to or Olga is there for support.
I have spent some time searching out other people's experiences of recovery from brain tumours to find out if this unsteadiness is common at all. I suppose I should just count my blessings because most people it seems end up in a wheelchair after treatment and never recover at all. But a few have mentioned balance problems. All of the other side effects of treatment seem to have disappeared, but I'm rather afraid that this problem is going to be with me for the rest of my life.
It was good to be doing something like this again. The only problem was that I am still a bit unsteady on my feet. I nearly lost my balance a couple of times. The extreme vertigo I experience means I keep well away from stairs unless there is a stout rail to hang on to or Olga is there for support.
I have spent some time searching out other people's experiences of recovery from brain tumours to find out if this unsteadiness is common at all. I suppose I should just count my blessings because most people it seems end up in a wheelchair after treatment and never recover at all. But a few have mentioned balance problems. All of the other side effects of treatment seem to have disappeared, but I'm rather afraid that this problem is going to be with me for the rest of my life.
6 February - A satisfactory result
It has been a month since my MRI scan, 30 days since my last post. We have tried to be patient and wait for the result. In the end it took a couple of phone calls before a doctor called us. He told me my scan was "satisfactory." I think I have heard that before.
The doctor understood that I wanted to discuss the result face to face and to ask about issues such as whether I can apply for the restoration of my driving licence. The consultant will arrange an appointment for us. I've heard that before, too.
After news about the tumour the question of whether I can drive is the other big issue for me. Only once I have my wheels back can I get on with life to the fullest extent. While I am stuck at home (apart from the occasional walk) I still feel like an invalid.
There is another urgency to my getting my driving licence back. If I can start driving by June (two years after my diagnosis) I can keep my no claims discount which was something like 70%, the result of 40 years of accident-free driving. That would make a difference of several hundred pounds to my insurance costs. So the longer I go without permission to drive, the greater my frustration.
The doctor understood that I wanted to discuss the result face to face and to ask about issues such as whether I can apply for the restoration of my driving licence. The consultant will arrange an appointment for us. I've heard that before, too.
After news about the tumour the question of whether I can drive is the other big issue for me. Only once I have my wheels back can I get on with life to the fullest extent. While I am stuck at home (apart from the occasional walk) I still feel like an invalid.
There is another urgency to my getting my driving licence back. If I can start driving by June (two years after my diagnosis) I can keep my no claims discount which was something like 70%, the result of 40 years of accident-free driving. That would make a difference of several hundred pounds to my insurance costs. So the longer I go without permission to drive, the greater my frustration.
7 January - MRI Scan
To Carlisle Infirmary this morning for an MRI head scan. Nothing much to add to that. I expect we will receive an appointment to discuss the results in a few days' time.
So the next few days promise to be an anxious time. Will the tumour have shrunk? Has it grown? Or just stayed the same at it was at the last scan more than 6 months ago? The answer to those questions will determine the direction my life will take. I dare not hope for the result I want for fear of being hugely disappointed.
Stay tuned for the next thrilling instalment!
So the next few days promise to be an anxious time. Will the tumour have shrunk? Has it grown? Or just stayed the same at it was at the last scan more than 6 months ago? The answer to those questions will determine the direction my life will take. I dare not hope for the result I want for fear of being hugely disappointed.
Stay tuned for the next thrilling instalment!
3 December - Getting back to normal
Today marks a milestone in my recovery as Olga and I returned from a long weekend in Manchester. It was the first time I had been away since discovering I have a brain tumour.
I felt fine and managed quite a lot of walking - without my stick. I had one nasty moment though when I was ascending the steps between the rows of seats in the RNCM concert hall. There was no stair rail and the seat backs were too low to use for support and I had a sudden attack of vertigo and thought I was going to fall over. Olga quickly realised what was happening and grabbed my arm for support. Thereafter I ensured that I clung to the rail when negotiating stairs - though I'm sure there are places where that just isn't possible.
Apart from that little incident I was fine. It was good to do once again the kind of thing we did in normal life.
I felt fine and managed quite a lot of walking - without my stick. I had one nasty moment though when I was ascending the steps between the rows of seats in the RNCM concert hall. There was no stair rail and the seat backs were too low to use for support and I had a sudden attack of vertigo and thought I was going to fall over. Olga quickly realised what was happening and grabbed my arm for support. Thereafter I ensured that I clung to the rail when negotiating stairs - though I'm sure there are places where that just isn't possible.
Apart from that little incident I was fine. It was good to do once again the kind of thing we did in normal life.
15 November - Hospital appointment
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.
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!
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