This was so fast...

Personal stories from survivors
jaytee
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This was so fast...

Post by jaytee » Mon Sep 15, 2008 10:11 pm

I found this forum twelve days ago, when I heard my sisters news. Hard to believe that. Only twelve days. A rollercoaster of hope, despair, hope again, and now...I don't know...resignation? I don't want to think so.
It was Wednesday, the third of September, when my sister, Penny, rang ne to say "I think I'm in trouble". She had been for a CAT scan. They told her not to go home just yet.
In the preceding eight or nine weeks, Pen's speech had been deteriorating. She would transpose words, and later phrases. Pen had had a slightly traumatic experience at her work (Pen is a very good child care worker), and her GP had diagnosed stress. One one of her visits to him, he dashed off a CAT referral.
The CAT people made an appointment with a Neuro that afternoon. Initial diagnosis, frontal lobe tumour. Come in next Tues for an MRI,possibly to be followed by surgery on Wed. One week! Shit.
Ok, so now it's Thursday, and Pen has a bandage round her head, and a smile on her face (did I mention that she's a positive soul?). Maybe they got it all. Have to wait for Path.
And now it's monday. I don't like Mondays. Seems that the Path shows a "highly aggressive" tumour. Seems that they can't be sure if they got even close to all of it, as it is of a similar appearance to normal brain tissue. Two months to two years. Chemo. Radio. Two months more likely than two years.
I just want someone to tell me what the f*ck it all means. (moderator, do what you will. But by god I need to swear at someone.).
I can't see to type any more.

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kenobewan
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Post by kenobewan » Tue Sep 16, 2008 10:34 pm

Let it go, let it out, its perfectly normal. You need to deal with this on an emotional level first.

Its hard to get your head around first. The night of my diagnosis, my wife and I spent nearly the whole night crying. But we were in a slightly better state after that.

The highs are high and the lows... There will be things that happen that will restore your faith in human nature. She will find a new appreciation of how many wonderful things there are in life, in between feeling crap through treatment.

Try taking things one step at a time. Find your song, one of mine is "Always look on the bright side of life" by Monty Python.

Please keep us updated and feel free to ask questions :o).

jaytee
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This was so fast...

Post by jaytee » Sun Sep 21, 2008 9:56 am

Thanks, kenobewan. I'm so glad I found this forum. The stories here help with a sense of perspective which I'm not sure I could have found on my own. I need this, as Pen is so amazingly positive, if philosophical, about her path, and I need to be the same, for her sake.
As for a song, well Pen has never been a great one for music, so I don't know what she will choose, but for me, Jackson Browne's 'For A Dancer' has seemed appropriate. As you say, I need to deal with emotions at this stage.

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kenobewan
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Post by kenobewan » Sun Sep 21, 2008 10:21 pm

The day after my diagnosis, I had to go and pack up my things at work. Then we spent the weekend making those dreaded phone calls to friends and loved ones.

Some were speehless, others acted like you had just told them the weather. We found we had to soften the news by explaining the series of events and introducing the word cancer before brain.

Twice I without thought said BT to the question, 'so what happened to you'. It was then you realise your mistake and try to make the person feel better.

Its a major shock to hear the news about Pen, as it was for our relatives. So you may need some support to get through this stage.

I am back at work. There are new treatments, although most are very slow to become available. There is hope :o).

stacy
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Post by stacy » Mon Sep 22, 2008 11:27 am

I was diagnosed on august 29th with a grade 2 astrocytoma after sugery to remove a supposed menigioma, so the shock of finding out overwhelmed my husband and I,I spent the first 2 weeks crying until I found this website, I cryed and laughed at some of the storys but now Ive decided to stop crying and fight my arce of to live so the battle is on unlike no other Ive ever undertaken, I will post my story soon as I find out more tommorow from neuro.

stacy

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kenobewan
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Post by kenobewan » Tue Sep 23, 2008 10:57 pm

Look forward to reading your story Stacy. As they a trouble shared...

vikram Somani
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Dont worry be happy

Post by vikram Somani » Fri Sep 26, 2008 5:36 pm

dear jaytee,
hi , i have gone through your story and what i feel is that you have become a bit angry may be with the doct or god but i must say that you be calm and today scince has developed a lot , have faith in god and ask your doct about targeted drug , you can go through my story and can
see what we have gone through but still we are fighting with this .
i will later give you the details of the drugs which we are using may be that can help your sister ,
till then take care and be calm
regards ,
Vikram Somani
you can also email me at :- somani_vikram@rediffmail.com

ksplat
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Re: This was so fast...

Post by ksplat » Wed Oct 08, 2008 12:10 pm

Hello Jaytee
So very sorry to hear about your Sis-Pen. I can relate & empathise with your feelings of anger, frustration & sadness. I haven't been around here for a few weeks as my Bro-Mark-has just passed away after battling a GBMIV for 19mths.
You should have received the Path now & I was wondering what the prognosis & treatment will be for Penny? How is everything progressing? Well I hope & pray.
Keep us updated when you can & don't forget you can come here to "rant & rave" & ask questions. This is a fantastic community of people who can offer support, comfort & advice or just an ear to listen.
Thinking of you & your Sis.
I will hold you up in my prayers.
Cheers, Angie.

jaytee
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This was so fast...

Post by jaytee » Fri Oct 10, 2008 10:21 pm

Sorry, I haven't been back for a while. Pen's diagnosis is glioblastoma multiform IV. Radio daily for six weeks (at this point ), chemo weekly. Prognosis, well, it's bleak. Two years at the outside, less is likely, with diminished quality. But, I guess a lot of you know that.
One of the hardest things is to watch my Mum, who is ninety. She lost her firstborn when he was nine, from leukaemia, after a two year battle. She doesn't want to see another child die, even if it is sixty years later.

Angie, I am sorry to hear about Mark. I hope that now he is free, and that there is a better place.

jaytee
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Post by jaytee » Thu Oct 23, 2008 5:28 pm

Hello again. Maybe some good news, I'm not sure. Pen's tumour had a large cyst on it. There appears to be some evidence of a better prognosis than with non-cystic GBMIV, with longer survival time, and longer time until recurrence :?:
Anyone have any input on this?

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kenobewan
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Post by kenobewan » Thu Oct 23, 2008 9:14 pm

Prognosis is measured as progression free and overall survival. Cystic GBM's appear to have an advantage in both:
Cystic glioblastoma multiforme: survival outcomes in 22 cases

jaytee
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She's still here!

Post by jaytee » Mon Feb 28, 2011 8:21 am

I thought I'd report back that after two and a bit years, Pen is still here, and doing well. Her MRI's remain clear and her general health is good. She is now able to drive again, and has gone back to work, part time. The differences in behaviour are still noticeable, but what the hell.
I don't know what to put this down to, given the extreme prognosis at the beginning. Was it the cyst? Or was it Pen's rigid determination to win, where diet and attitude were paramount? Or perhaps both?
Anyway, we are all stunned and relieved, and very pleased to have her!
I hope and wish for similar outcomes for everyone else here.

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kenobewan
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Post by kenobewan » Mon Feb 28, 2011 10:43 am

Great to hear from you - thanks for the good news!

"The median isn't the message" by Stephen Jay Gould is a great article. He was able to find a new treatment. While those don't come along very often for us, my research tells me that good lifestyle changes adjust the prognosis by 2-3 times. We can't say much about any case in particular, but the evidence is strong that the right changes do put us to the right of the median curve.

So here I am nearly four years after my diagnosis and past how long my doctors expected me to live. Like Pen, I can't point to any one thing I have changed - but I know that change was necessary if I wanted to live. If I had changed nothing then I don't believe the outcome would have been the same. This was very difficult for me to admit due to my previously high levels of physical fitness.

Well we may not know why exactly we have made it so far, but we do have a good idea. There may not be a cure, but good news like this reinforces our hope. If we are able to make changes that shift us as far right of the median curve as possible, this is strong evidence of the chronic nature of this disease and its ability to be affected by changes in lifestyle.

stacy
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Post by stacy » Wed Mar 02, 2011 9:37 am

Hi Jaytee,
Just somemore wonderful news to add to the BT survivour list, Glad Pen is doing fine, Congrats to all.
Stacy

Hearcam
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Post by Hearcam » Thu Mar 03, 2011 6:28 pm

That's great Jaytee, I have only just caught up with your story about Pen from your recent post.
My wife Denise (GBM4) also had a great attitude and remains MRI clear as we approach the 2 year mark. She is completely normal with no issues.
Of particular interest to me was your comment about Pen's diet. I am absolutely convinced of the importance of what we eat and how it can affect the outcome of one's recovery. I would love to hear a bit about what she does as far as food, supplements etc goes. I wonder if it fits in with my findings?
Congratulations on her success and your perseverance and support.
Dave.

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