Saturday 2 October 2010

Results update

Well I said I would write more this weekend so here goes. This is probably
the most difficult post I have ever written, it seems to be usual for me of
late, there's been a lot of difficult things for me to do and times for me
to endure over the past month, I have got through each of them in no small
part due to the love and support of those around me which includes those
friends Mark, (Bobbie Dazzler) and I have online, some we have never met and
others we rarely see.

If you've been following you will know I was admitted to hospital 8th
September following the discovery of a growth behind my left eye. On 15th
Sept I was diagnosed with a brain tumor and on 22nd I underwent major brain
surgery to have it removed. Following removal the diseased tissue has been
analysed and I was invited to the hospital this week to learn the results on
Weds 29th Sept.

The anticipation of Wednesdays result has been very stressful for both Mark
and I, the uncertainty, the fear and the simple "what if" when your mind
thinks of what this could be.

On Wednesday my worst fears came true. I have been diagnosed with a fairly
rare form of Brain Tumor, a Glioblastoma Multiforme (GBM) or Grade 4 brain
Tumor. It's malignant and very aggressive, there is no cure and my
condition is terminal. The prognosis is not good. I can't begin to explain
how this has shattered our world and that of those around us.

Many of you will have seen facebook updates from Mark (Bobbie Dazzler)
advising we have now retired from stage, with just a few exceptions we have
been overwhelmed by messages of support and good wishes. This post will
probably explain those posts more clearly.

We have not posted this before as My parents have been abroad and were not
aware of my condition, I wanted to see them and tell them personally before
they found out from those around us and them.

I will receive treatment which will commence within 3 or 4 weeks, I will
receive radiotherapy and chemotherapy on a daily basis, this cannot cure me
but may help extend the time I have by fighting off the disease a little
longer.

I am sorry that this may make uncomfortable reading, it's not nice to write
either but, I don't want people to make their own assumptions or guesses and
don't need an outpouring of pity, I want to enjoy the time I have. In
saying that I am really encouraged and touched by the messages received for
both Me and Mark, they really mean a lot.

I will update more in the next few days, please keep reading, it's nice
knowing you're out there.

Xxx Steve - Enid Whiplash

5 comments:

  1. We may not have seen each other much over the last few years, but you and Mark and your families are in my thoughts right now.
    with all my love

    Farmer Dave xXx

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  2. Words fail us when I have seen your post. Get in touch if you need anything.

    Neari & Heather x

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  3. Dear Mark and Steve,

    I am so sorry :(

    From what I have read about you both I am certain you will put up the best possible fight over the coming weeks and months.

    I know it probably feels like you have been robbed of every last bit of hope you had this week but, there are people who get through this and can call themselves long term survivors. Whether this is something either of you want to read about now or in the future I will post the link here just incase http://www.btbuddies.org.uk/stories-of-hope.html One of our trustees is himself a long term Glioblastoma Survivor.

    As well as sharing the link above there was one other thing I wanted to send to you guys today.

    There's a book that I find myself quoting more and more these days because this is how I feel about the prognosis 'statistics' out there. The book is written by Dr Peter Black, a very well known and respected neurosurgeon from Boston. He writes...

    "If you've recently learned that you have a brain tumour, keep this in mind: YOU ARE A STATISTIC OF ONE. No two tumours are alike. No one else shares your genetic makeup and your unique brain structure. This doesn't mean that you have to face this journey alone. It does mean that as you explore treatment options and "success rates" of various procedures, you cannot assume that the statistics that you encounter apply to you."

    Steve and Mark, I am here for you both any time. Whilst we don't know one another other than through the brain tumour 'world' if there is anything I can do just drop me an email natalya@btbuddies.org.uk

    Thinking of you both.

    Your BT Buddy,

    Natalya

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  4. It's times like these when we realise how much our friends and loved ones mean to us, I have been going through a bit of a rough time lately, nothing really compared to what you have both been going through, but my friends have been a great comfort to me over the last few weeks and I am eternally grateful, I'd be a mess without them. I hope you have found the same as it helped me so much to have their support.
    You both sound very brave and I admire your strength, It gives me great comfort to know that no matter what life throws at you there is always someone there to hold your hand.
    You are both in my thoughts everyday,
    *hugs*
    Tricia from sunny Millom, Cumbria xxxxxxx

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  5. hello , i dont know what to say but i know i want to say something . We have never met my name is Angie i have just read your blog , i cant imagine how devastating this is and what impact this has had on everybody involved , but what i can say is how inspiring and courageous you are .
    I will be reading your blog and watching your progress, sending you l positive energies and vibes .

    I live in Manchester too and i am a photographer , anything you need message me xxxxx

    I hope you dont mind me posting this xx :)

    ReplyDelete