Brain Tumour Survivor

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PostPosted: Mon Mar 30, 2009 3:47 pm 
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Joined: Thu Mar 26, 2009 11:21 am
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Location: Albury NSW
Hello. I am a new member. I was diagnosed with an Astracytoma Glioma on my right side in my Thallamus. I am not medically trained and am very much a lay person so forgive me if I sound naive. I noticed weakness on my left side particularly my arm and was eventually referred to a Neuro- Surgeon then had an MRI which showed the brain tumour. I was very promptly sent to Melbourne for a biopsy and when I came out of hospital was on a walking frame as my left leg was very weak. It has now been approx a year since the diagnosis and I now walk with a walking stick, am not allowed to drive and have left work. I was originally on dexamethisone which sent me quite manic and I was unable to sleep. I remember saying to my oncologist that I would die from lack of sleep if he did not prescribe something so I was given sleeping tablets.

That is all over now and am not taking any medication for the tumour only paracetamol if I have pain. I also had 6 weeks of radiation which this type of tumour responds well to. It is a grade 2 tumour and is slow growing. The main thing I hate is my disability on my left side. I have always been very active and independent so I worry that is going to get worse. I have another MRI (which I am dreading as I have had 3 so know what to expect) in 2 weeks and see the Neuro-Surgeon next month.

Well that's it in a nutshell. Good to read the various stories on this site.

Linda


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PostPosted: Mon Mar 30, 2009 4:50 pm 
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Welcome,
I understand exactly what you mean about the weekness and lack of sleep. My problem is mostly my left arm. It makes all sorts of tasks very difficult. I can also tell you from experience that stressing out over upcoming tests is not good for you. Time and again I have worried in vain. It is wasted time and energy. Try to find what distracts you. Reading, talking with friends writing your life story or exercising. I am sure you can think of something productive. My biggest problem is having the discipline to do what I know I should do. Not going to work which I enjoyed and not being able to drive are also a bugbear.
I am still trying to reduce my dex dose but have found it has to be done exceptionally slowly. It has made an improvement especially to my sleeping.
Wendy


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PostPosted: Mon Mar 30, 2009 9:11 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
I also have hemiparysis, the weakness is down my right side. Learning to write with my lefthand has been the hardest thing so far for me :).

Its great that you are not on Dexamethasone any longer. I have just tapered off and have noticed the return in cardio strength. I am lucky that I have a sporting background and am still able to exercise everyday.

Have you checked out driving requirements yet? I had to have lessons but managed to get my licence back with an automatic after just over 1 year.

If you are like me it is hard fill in the day if you are at home all day. I managed to get back to work after 5 months, but there may be other options. I am sure there would be options if you are keen for work, even voluntary work.

I am planning another operation for next year so will have to put my thinking cap on too, but will consider voluntary work from home at first via my computer.


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PostPosted: Tue Mar 31, 2009 12:08 pm 
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Joined: Thu Mar 26, 2009 11:21 am
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Location: Albury NSW
Thank you for your response. I still have my licence but Dr told me not to drive and I am quite uncordinated. I guess I just have to do it. I also think I will go back to work. With regards to exercise -
I ride an exercise bike, go to aqua aerobics and do my physio exercises. Sometimes it is hard to keep motivated but when I do I feel better and more flexible in the muscles.


kenobewan wrote:
I also have hemiparysis, the weakness is down my right side. Learning to write with my lefthand has been the hardest thing so far for me :).

Its great that you are not on Dexamethasone any longer. I have just tapered off and have noticed the return in cardio strength. I am lucky that I have a sporting background and am still able to exercise everyday.

Have you checked out driving requirements yet? I had to have lessons but managed to get my licence back with an automatic after just over 1 year.

If you are like me it is hard fill in the day if you are at home all day. I managed to get back to work after 5 months, but there may be other options. I am sure there would be options if you are keen for work, even voluntary work.

I am planning another operation for next year so will have to put my thinking cap on too, but will consider voluntary work from home at first via my computer.


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PostPosted: Tue Mar 31, 2009 12:17 pm 
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Joined: Thu Mar 26, 2009 11:21 am
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Location: Albury NSW
Hello Wendy, I will tke your advice on board. I am a bit of a worrier and the nights are the worst time when your thoughts are omnipresent. I feel so much better since I started reading this website. I think for the last year I have been just existing.
regards, Linda
wendy wrote:
Welcome,
I understand exactly what you mean about the weekness and lack of sleep. My problem is mostly my left arm. It makes all sorts of tasks very difficult. I can also tell you from experience that stressing out over upcoming tests is not good for you. Time and again I have worried in vain. It is wasted time and energy. Try to find what distracts you. Reading, talking with friends writing your life story or exercising. I am sure you can think of something productive. My biggest problem is having the discipline to do what I know I should do. Not going to work which I enjoyed and not being able to drive are also a bugbear.
I am still trying to reduce my dex dose but have found it has to be done exceptionally slowly. It has made an improvement especially to my sleeping.
Wendy


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PostPosted: Thu Apr 09, 2009 4:05 pm 
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Joined: Thu Feb 12, 2009 4:52 pm
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Hi Linda,
"Just existing" is what I did for about a year and now I am angry with myself for letting that happen to those precious moments. Many people die suddenly and don't get the opportunities to learn and make things right that we have. I tried thinking of it this way.....
Suppose you died suddenly in a car crash on the day you were diagnosed. Up at the pearly gates you pleaded with God not to take you and God said "OK but you will have cancer and then die in another 18 months" I think everyone would think that was a good deal. 18 months to make sure the kids will be OK and to tell all of your friends you love them ,to go and do some of the stuff on your bucket list.
While you can ,don't let fear interfere with the posibilities this disease presents.
And Ken, being treated differently is in itself an excellent learning experience which you have obviously thought about. You are treated differently because you ARE different. Dare I say it but we are ALL very special.
I am being a bit morose now, sorry 'bout that folks.

Love Wendy


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