Brain Tumour Survivor

A site dedicated to leading edge treatment for brain tumours
It is currently Mon Sep 25, 2017 9:26 pm

All times are UTC + 10 hours




Post new topic Reply to topic  [ 34 posts ]  Go to page Previous  1, 2, 3
Author Message
 Post subject: Re: This was so fast...
PostPosted: Wed Jul 02, 2014 9:47 pm 
Offline
Registered User

Joined: Wed Sep 03, 2008 11:03 pm
Posts: 16
Location: Melbourne, Australia
Six years ago I'd never heard of GBM IV. Then the diagnosis of my Sis, then the research to find out what this thing is, which led me here. Why? did I hope for a cure? Was I looking for hope not found anywhere else? I'm not sure that I know, but the idea that others were going through similar, well, what are they? Issues? Not really strong enough.

It now seems that Pen will die. That's ok, we all do that. It's odd, though, when there has been so much hope, over more than five and a half years, that I can be so unprepared. The truth is, Glioblastoma multiforme IV kills.

When the best GP in the known world, Shayne Fennessey, was felled by this, it was unbelievable I mean that literally. Impossible to believe, so fast. Great man, can't happen to him.... So, when Pen managed to "beat" it, I suppose complacency set in. What fools we all were (we, as in those of us related to Pen; not aimed at anyone on this forum ).

Pen's second surgery was about eight weeks ago. She progressed extremely well, and we all were hopeful, and then she regressed.

I guess I was stupid in that I believed that, since the first op gave us five unlooked for years, then the second would do much the same. I guess the psy guys amongst us would call that denial. So what?

Pen's symptoms returned quite rapidly. She lost her speech, her balance went and her bladder control diminished. She went back to St V's, had an MRI... No further surgery is indicated...., so that's it.. Months left, with what? Well, her grandkids I guess.

This is a disjointed post, and I apologise. Pen is still here, but it's time only for her own family, which I respect. I cannot remember a sadder time, nor a braver person.

I will report developments, and I will be back from time to time. This forum is extremely important, even if it's only used for 'venting'. I thank you all for, well. everything.

Nobody knows what lies at journey's end when they set out. ( If that's a quote, I apologise ).


Top
 Profile  
 
 Post subject: Re: This was so fast...
PostPosted: Tue Jul 08, 2014 2:37 pm 
Offline
Registered User
User avatar

Joined: Mon Dec 24, 2012 1:14 pm
Posts: 25
Location: Syd, AUS
Thank you for sharing your touching story Jaytee. No don't think you were stupid at all, having hope is what gets us by day by day, what gets us through those incredibly difficult times.

Please keep us updated. You are a very loving brother and she must be lucky to have you. I'm sure you will be a great comfort to her.

x


Top
 Profile  
 
 Post subject: Re: This was so fast...
PostPosted: Thu Sep 18, 2014 10:27 pm 
Offline
Registered User

Joined: Wed Sep 03, 2008 11:03 pm
Posts: 16
Location: Melbourne, Australia
I wish my sister would die. No, I wish she COULD die. I hate myself for saying that, but it's true. I know that SHE wishes for the same ting, although she cannot say it. She can't say anything. The worst thing is that she is still there, behind the eyes, still cheerful. I think that is the hardest thing, because she has accepted what I cannot, as much as I know I have to.

There is more to say, but not now.


Top
 Profile  
 
 Post subject: Re: This was so fast...
PostPosted: Thu Nov 06, 2014 2:08 pm 
Offline
Registered User

Joined: Wed Sep 03, 2008 11:03 pm
Posts: 16
Location: Melbourne, Australia
Well, I got my wish. On Monday, November the third, at 1:15 PM, Pen passed away. She died peacefully at home, something made possible by the constant love and care afforded her by her two daughters, who sacrificed all their time, even though they both have young children. Also, the care of one of the most enlightened Doctors around, who went to great lengths to provide support, with constant home visits (!).
I wasn't there. I got to say goodbye two days before. I like to think she heard me, but I just don't know.
I want to thank the people who come here. All of you who have commented and given your thoughts and your support, and all of you who have just read my ramblings. This forum is fantastic.
I wish all of you joyous outcomes, although I know that, for many of you, that won't be the case.
If there's one thing I can take from the last six years, it is; be courageous, and never, ever, give up. Pen was given weeks to live. She got more than six years. She saw the birth of three grandchildren, and leant of the beginnings of a fourth, in that six years. Those six years are a blessing.
Vale Penelope Anne.


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 34 posts ]  Go to page Previous  1, 2, 3

All times are UTC + 10 hours


Who is online

Users browsing this forum: No registered users and 4 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB® Forum Software © phpBB Group
[ Time : 0.076s | 15 Queries | GZIP : Off ]