Patient Perspective

Dear Doctor Jahani-Asl research team

Thank you to you amazing people for working towards finding a way to increase the survival rates for GBM.

My name is Vicki and I was an active 43 year old whose favourite pastime was to run. I would run 70kms each week, so maybe it was more of an addiction than a pastime. That all changed for me on the 1st of June 2011 after I had a couple of seizures wound up in hospital had an MRI and was told I had GBM. Heck I didn’t even know what that mean.

I’m sure my story is nothing new to you, but what might be is that I am still here almost five years later. I like so many of us were given short periods of time to live, initially after surgery (where it was debulked but unable to be removed and I had a stroke which meant running was no longer an option), I was told my survival rate was 12-14 months and then in September 2011 I had another big stroke and was told that time was even further limited.

Since being diagnosed, I have read everything I found around GBM and spoken to everyone I can. I set up a support group for the eight people I found in New Zealand still living with GBM, we now have three members (you just have to laugh here or else I would be rocking in the corner crying) and of our current three members one is in the hospice and the other isn’t doing so flash either.

Apart from extreme tiredness and not being able to walk long distances, I am doing well. The original bit is still there (slightly smaller after treatment) and in August 2015 I had a new spot on the opposite side of the brain, in February 2016 another new spot turned up but the other two haven’t grown.

I had my last treatment in February 2012 and the approach to the two new spots is wait and see and call us if you have any concerns. I take each day as it comes although I can’t say waiting and see is a very comforting place to be.

After being told that there would be no further research in New Zealand and that I should be happy for the time I’ve had (which I am very grateful for) I was overwhelmed to see that you are working away and are making breakthroughs.

Thank you for not giving up on us, we are like anyone with a terminal illness we just want hope. With deep respect

Vicki

This photo is of my husband and I, I think somewhere people forget we are real people. Thank you for giving us hope.

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