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Lyn - my story - GBM IV

Posted: Fri Aug 28, 2009 12:11 pm
by lyn
[color=indigo]A big hello to all ! [/color]

I'm so glad I found this site....the fact that there are survivors out there, and I hope to continue to be one of them.
I'm 46 years old. I've been a pharmacist for 25 years mainly based in community pharmacy. I've been married for 21 years and have three sons aged 18, 14 and 10.

I had a tumultuous year in 2008 where I began to doubt myself as a pharmacist and was noted to have "changed" in personality. My GP started me on anti-depressants which seemed to help for a while. Then I began to experience severe headaches which would often awaken me. I also had an episode of amnesia which I could not explain.

In February 2009 I was diagnosed with a brain tumour the size of a tennis ball in the R parieto-temporal region (hence the personality change). Subsequent surgery on 11th March 2009 revealed it to be a GBM IV.

I've had 6 weeks of combined radiation and chemotherapy resulting in a new hairstyle which is now re-growing. I've now completed round 3 of chemo (half way there). I'm off the anti-depressant and the anti-epileptics. Still not allowed to drive yet. My only problem so far is my short term memory, but I find writing things down helps with that.
I have been classified as permanently disabled. I would be a danger to be a dispensing pharmacist. Thankfully I had Income Protection Insurance which eases the money situation.

I'm doing really well so far and hope this continues for a long while yet.

Good Wishes

Posted: Fri Aug 28, 2009 4:59 pm
by kenobewan
Hi Lyn,

Welcome to the site! Thanks for sharing your story.

It never an easy diagnosis to receive, but sounds like you are coping well so far. I hope that you have found something positive to replace working. I have a second career in mind if I am no longer able to work in the future. Getting back to work made me feel relatively normal again and fortunately I had the option.

I take phosphatidylserine for brain health. I also do puzzles to keep the brain active. Your positive outlook will take you a long way.

Posted: Sat Aug 29, 2009 1:44 pm
by Morpheus
Thanks for sharing your story Lyn - there is hope out there - we just need to keep pushing forward.


Posted: Fri Nov 06, 2009 8:18 am
by femme
Welcome to our site,
Our daughter Nicole was diagnosed with GBM in Jan. 2006 and was given a very grim prognosis.
To date she is doing great and is due for her next 6th monthly MRI, which we believe will be positive results again.
Our focus is positivity.
"where there Faith, there's HOPE and where ther is HOPE, MIRACLES can occur"
Take care :D

Re: Lyn - my story - GBM IV

Posted: Fri Nov 06, 2009 7:31 pm
by montaldi
lyn wrote:A big hello to all !

I'm doing really well so far and hope this continues for a long while yet.

Good Wishes

Lyn, let us know how you are going? Any more updates? Improvements in the memory department?


Posted: Thu Dec 30, 2010 2:13 pm
by lyn
Hi all,
In September 2009 I saw a clairvoyant, tarot card reader at Byron Bay while on a family holiday... She told me 2011 would be the start of a new chapter for me. At the time, I thought, WOW !!! I'm going to live for that long and now that time has almost arrived. It's now over a year since my second craniotomy in November 2009 following a recurrence. I'm having MRIs every 3 months and have had 4 clear scans since then....Maybe it's time to start believing what the clairvoyant said that my life line put me well into my 60s......

Happy New Year to you all ! Here's to 2011 and BEYOND !!!

Posted: Thu Dec 30, 2010 2:32 pm
by kenobewan
Great to hear things are going so well!

I'm interested whether you changed anything since your last operation. If you did more power to you, as the timeline appears to have your second operation and now longer than your first - that's rare.

Posted: Thu Dec 30, 2010 3:14 pm
by Morpheus
Great to hear from you Lyn, and glad to hear things are going so well!

I've been reading a lot about Carl Jung's ideas about synchronicity, and you know what your experience with the Tarot card reader is not the weirdest thing I've come across. Far from it! Power to you.


Posted: Fri Dec 31, 2010 8:29 am
by lyn
The amazing thing ([b]or is it foolish[/b]) is that I'm not having any treatment. a[apart from taking Bioglan Focus, Vitamin D & a multivitamin. Whatever the neurosurgeon did in my second craniotomy has seemed to make all the difference. I make sure I get some light exercise every day, mainly taking my two dogs for a walk or a few kms on my exercise bike. I also try to keep my brain active, either on the computer or via music. I am a singer-songwriter and have re-discovered the art of writing a song. In my working life, juggling family & career, I never had much time for this. I'm even in the process of recording a CD....a mixture of original & covers. I'm trying to stay positive. Always seeing the next goal, which at the moment is seeing my youngest son start high school in Feb.

Posted: Fri Mar 04, 2011 12:44 pm
by Morpheus
Lyn, I though of you when I read this:

Is there any better truth about ultimate things than the one that helps you to live?

CJ Jung

Posted: Fri Mar 04, 2011 2:43 pm
by lyn
That is beautiful ! Thankyou Morpheus !

Latest MRI in February still shows no changes.....Now on 6 monthly MRI scans to monitor ! Defying the Odds ! Should write a song about that. Oh yeah ! I already have !

Re: Lyn - my story - GBM IV

Posted: Fri Oct 19, 2012 1:46 pm
by lyn
19/10/12 A quick update... My last MRI Aug 2012 ....No evidence of recurrence of tumour ! I'm off to a Gala Ball " A celebration Of Hope" tonight, raising money for brain tumour treatment and research. How lucky am I !!!

Re: Lyn - my story - GBM IV

Posted: Sun Oct 21, 2012 4:56 am
by kenobewan
Great news!

Keep up the good work, its always a relief when those scans are negative :). Thanks for keeping us up to date on your progress.

How did the Gala Ball go?

Re: Lyn - my story - GBM IV

Posted: Thu Mar 13, 2014 12:50 pm
by lyn
It's now March 2014 and I have survived five years with GBM ! MRIs continue every 6 months ! Keeping busy and very grateful !!

Re: Lyn - my story - GBM IV

Posted: Tue Jul 08, 2014 2:48 pm
by ashony
lyn wrote:It's now March 2014 and I have survived five years with GBM ! MRIs continue every 6 months ! Keeping busy and very grateful !!
I'm so happy for you!
Thats the way! Keeping busy and being with loved ones makes things a little more normalized.