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Coping With A Brain Tumor-Part 2

Tue Jan 15, 2008 10:32 pm

Its been along time since I posted, in fact I believe it was November when I posted last unless I'm mistaken.
I' thought I had better start a seccond part as the first one is probably archived.

Those of you who replyed and sent fantastic messages of support to John, Simon and myself as John had just begun his fight against a malignant brain tumor back in September 2007, may have wondered where I had suddenly vanished to and
I was keeping people updated as often as possible on John's condition.
Here is an up- to- date report.

On 4th of December 2007, John began his radiotherapy treatment and has now almost completed the course.In fact on this coming Friday, 18th January 2008, I am pleased to say. Its been exhausting, travelling back and forth to the hospital, but members of my family have rallied round., taking it it turns to drive to the hospital and back, as well as myself.
I,ve been able to continue working as well. My employer's have been exceptional in their understanding of the situation I am in and I have kept them fully informed of any developments,and they have given total co-operation. I can't fault them whatsoever. However, there is still along road ahead.
John has coped so well with the treatment and has had very little side effects apart from losing some of his hair permenantly ( radiation kills any hair growth and the hair roots dead!). He hasn't lost his food appetite, in fact I've had to stop him raiding the fridge for food.
John will be placed on a followup program after Friday. He will return to the hospital on 19th February 08, to check on his progress. His medication , on instruction from the Oncologist is to alter slightly from today, that is, a small reduction.
It is hoped that as John is weaned off Dexamethasone, he will not have any seizures. I'm pleased to say that he has not had any more since he was initially taken ill, on 16th September 2007. Recent blood tests done by his own GP revealed an almost perfect report on his general health ( apart from the tumor). The only worry is his Cholestorol level which is rather high at 10.8. The dexamethasone and Zoton tablets are the main culprits , so they have to go! It means a strict diet as well.
Unfortunately, the trapped sciatic nerve problem hasn't been cured.John is on nerve block tablets, and strong one's at that, but it appears that they are now only giving moderate relief from lower back and leg pain. That is going to be addressed by another specialist soon, so we await a letter of admission for that. There are two options for this.
1. A nerve block injection ( like an epidural ) which will last for a couple of months at a time. or,
2. An operation to "release" the nerve trapped, between the two discs.
The latter , may seem the better option, but it isn't without risk, as is with any operation and isn't guaranteed to be successful either.
Another big worry is the financial impact that this has all had.
We are locked in a battle to reduce our mortgage, as well as reducing the payments on our credit card. The insurance on the mortgage will last for another 8 months before we are subject to full payments again. As well as having to fight to get benefits toward some of our Utility bills, there is all the stress of having to chase other claims, such as Incapacity Benefit, Income Support, Working Tax Credits and getting help with things such as the cost of dental treatment and eye care. Its the filling in of form's, then another form and another form and the checking of what income you have been earning. Its going to be tough and I may yet be forced to sell the home and move into rented accommodation in the future, if things get bad.
Well , I will close for now.
Wishing you all good health and a Happy New Year to all A-netters all over the globe.
Peace to you and will write again soon.

Being ill sucks. Never take life for granted!!
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RE: Coping With A Brain Tumor-Part 2

Tue Jan 15, 2008 10:48 pm

Sue, I'm glad John is alright and is getting better. I hope you and Simon have been holding up ok and I'll see you three at MAN sometime in the hopefully not too distant future.  Smile
One Life, Live it.
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RE: Coping With A Brain Tumor-Part 2

Tue Jan 15, 2008 11:29 pm

Sue, that's great news about John. I'm praying he continues his road to recovery. I hope that that he won't have any seizures, or any back pain, and that he will be as comfortable as can be.  Smile. I also am praying that your finances will be okay, and everything will work out for the best.

All the best, thanks for keeping us informed, and please know you guys are in my thoughts and prayers.

Tale care,
Yesterday we've sinned, today we move towards God. Touch the and respect...Safe Star!
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RE: Coping With A Brain Tumor-Part 2

Tue Jan 15, 2008 11:30 pm

My prayers are still with all of sound like a strong, feisty can beat this.
'Somebody tell me why I'm on my own if there's a soulmate for everyone' :Natasha Bedingfield
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RE: Coping With A Brain Tumor-Part 2

Wed Jan 16, 2008 8:49 pm

Thanks guys.

Quoting Myt332 (Reply 1):
I'll see you three at MAN sometime in the hopefully not too distant future.

We will make it up to MAN this year. John has insisted on going and admits that he misses going up there, would you believe it!. We will be taking delivery of a brand new Vauxhall Vectra car soon through the Motability Scheme. He's getting the benefit to cover it , so why not?. ( still keeping our Astra as Simon is going for his driving test soon and if he goes for the Pass Plus Driving Test, Motability will put him through it for free. John can't drive at the moment, but we are locked in a battle with the DVLA, who want to take his licence away, without first assessing him through a proper medical. By law, any medical condition must be declared, otherwise John would have faced a fine of £1000! On checking with all the doctors, the DVLA haven't even contacted them as they stated in FOUR letters. I think they hoped he would give his Licence up without a fight. They stated that his Licence would be revoked from 12th January this year but we have challenged them and at the moment, it is still valid, but John has not drove since 15th September 2007, obeying the doctors orders. They have never said that he would have to give up driving, as there is hope, regarding his condition. Ok, he has to be seizure free for about 12 months, but his medication is controlling things "to the book" and if we don't reply within 14 days, then we are forcing the DVLA to act as they first promised to do, and contact all the doctors, and get a full report on John's condition, and assess hin PROPERLY, and ask for a proper medical examination to be carried out. Even our own GP, said do not just "roll over" and give up. There is no reason why John may not be able to drive again, provided his treatment programme works. He could be able to drive under certain"disabled rules". The DVLA can be very harsh at times and totally wrong. They seem to have judged that John will be dishonest and "break the law" but he has no intention of doing so. He intends doing everything correct and go by the guidance of his doctors.
At the same time, we all know that there people out there who continue to drive with dangerous medical conditions and who DO NOT declare it, making it harder for those who are genuinely abiding by the law. The honest ones who declare, are then sometimes unjustly penalised because of these that flout the law, so EVERYONE is judged the same way but that's how it goes. Its very frustrating!

OK. Roll on the better weather ( hopefully) and the longer daylight hours so we can get some good old plane spotting done.
Regards to you all out there

Being ill sucks. Never take life for granted!!
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RE: Coping With A Brain Tumor-Part 2

Wed Jan 16, 2008 8:53 pm

Quoting CON207 (Thread starter):
Wishing you all good health

No, WE wish you all the good health in the world!

Quoting CON207 (Thread starter):
Happy New Year

Same to you.
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RE: Coping With A Brain Tumor-Part 2

Fri Jan 18, 2008 2:59 am

Good to hear from you two again, and under the circumstances with decent news!

It sounds as if it's still a tough fight, but it's good to know that there is at least some progress and relief.

Squeeze as much fun and recreation out of it as possible - you've earned it!

All the best to both of you!  bigthumbsup 
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RE: Coping With A Brain Tumor-Part 2

Fri Jan 18, 2008 11:37 pm

hI Sue

Haven't posted for quite some time and noticed your thread.....Just wanted to send my thoughts and wishes and reading the latest........Good news !

Kind Regards

Claire x
Women don't have hot flushes, they have Power Surges....
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RE: Coping With A Brain Tumor-Part 2

Fri Jan 18, 2008 11:47 pm

Glad to hear things seem to be moving in the right direction.

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