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Re: This was so fast...

Posted: Wed Jul 02, 2014 9:47 pm
by jaytee
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 ).

Re: This was so fast...

Posted: Tue Jul 08, 2014 2:37 pm
by ashony
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.


Re: This was so fast...

Posted: Thu Sep 18, 2014 10:27 pm
by jaytee
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.

Re: This was so fast...

Posted: Thu Nov 06, 2014 2:08 pm
by jaytee
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.

Re: This was so fast...

Posted: Sat Jan 20, 2018 10:07 pm
by jaytee
I know this is a forum for brain tumours, but I recall how lovely you all were to me with the illness and death of my sister Pen, and I thought you wouldn't mind if I went a little off topic.

Cancer strikes in many ways. My lovely wife was fortunate enough to get to go to Scotland at the end of October. Her roots are there. She went with her daughter. They had a wonderful time, finding where her father was born. She came home in early November. She was not well. We assumed jetlag and a virus. After a few days I convinced her to see a GP. OK, straight to Emergency. Admitted, in for a week. Came home for another week, then back to a different Emergency. Admitted. Diagnosis, advanced liver cancer. So, less than two months ago we were reeling with bad news. Now, she is dead. She died in my arms three nights ago. I have to be glad she got to Scotland, but it breaks my heart that we were planning to go there together, and now never will.

We have to die of something, I guess.

I hope nobody minds that I posted this on this forum.