Dictated to Olga.
26 March- Stair lift installed
I never imagined that my brain tumour would have such effect on my mobility. I always thought I would be able to pull myself up and down the stairs as long as I could grab banister rails. That as it has turned out prooved impossible, so we have had to install a stairlift. Supprisingly there were several firms that could do that for us even here in the back of nowhere. In the end we went for firm that could install one quickest, which turned out to be Acorn. I was impressed how quickly it was installed. The installer rang the door bell at 9 o'clock and by 11:30 I was taking my first ride up the staircase. It was not a cheap solution but cheaper than moving to a bungalow.
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.
11 March - Going Weak at the knees
Olga took me for the usual short walk to the end of the cul desac for a breath of fresh airand to prove to myself Ican still walk.just as we got to theend of the road I felt my knees buckle under me. Olga's supporting arm and my stickstopped me falling to the ground. It looks as if it is time to consider a wheelchairor a mobility scooter. I was hoping it would not come to this as no oone that I know of who had the same type of tumour survivedfor long after going in a wheelchair.
It may not be apparent but Iam still having considerable difficulty using the computer. I have to correct nearly every characterI type. Nowadays Olga has to do my online jobs such as internet banking. Blogging and answering email arenn't important enough to get this special treatment I'm afraid.I've had to give uup my other blog.The same visual problems have put paid to the other activities I used to amuse myself with. It's just darned frustrating.All I am good for is watching TV and listening to the radio
It may not be apparent but Iam still having considerable difficulty using the computer. I have to correct nearly every characterI type. Nowadays Olga has to do my online jobs such as internet banking. Blogging and answering email arenn't important enough to get this special treatment I'm afraid.I've had to give uup my other blog.The same visual problems have put paid to the other activities I used to amuse myself with. It's just darned frustrating.All I am good for is watching TV and listening to the radio
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