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rob's blog

NOT FINISHED YET... 

1/25/2017

12 Comments

 
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As you may be aware, I have just had the meeting to share the pathology results from the bulk of the tumour that was removed from my brain 30th December. I think it’s fair to say we came out of the meeting pretty shell shocked.

They informed us that the tumour is brain cancer and that it is the top of the pecking order, known as Grade 4 and apparently it can’t be completely eradicated it can only be reduced and monitored. The tumour is a fast growing bugger that has probably only been there for three to six months. It makes some sense now I think about it, as it was around September that Sarah and some friends were noticing a slight change in my behaviour; just small things like sometimes being quieter than usual, and this would probably have been the time the unwelcome visitor dropped in and set up camp in my head.
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​The oncologists weren’t able to give me a prediction on survival rates, as understandably each person is unique but I assure you right here and now that I’m going to be around bothering you for some considerable time to come.

That sounds like an easy thing to boast, but consider the fact that I’m an awkward git who never does things the easy or straightforward way. I lost my sight by the time I was twenty and I guess then I could have chosen to take the easy route and sit in an office job and accept the easy way out, but that’s too easy. Instead I decided to earn my international vest playing Goal-Ball at my first Paralympic Games and then I realised that I was good at running. Thirteen months later I set my first world record and running and over the years I have set twenty-two world records, won eight Paralympic Gold medals, three silver and one Bronze medal.  Hey, I’m not here now to boast of my sporting achievements, what I am trying to say is that I feel if I set my mind to achieving positive outcomes and overcoming obstacles then why should this tumour be any different!

Sarah and I left the hospital that day and went for a walk on the beach. It was a beautiful sunny Auckland afternoon and ironically a good day to be alive.
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We have just meet with our new oncologist, Dr Anthony Falkov who is a very impressive man with over 20 years’ experience and the head of brain cancer in New Zealand and someone I really connected with. He has seen it all, and for my situation he strongly recommended targeted radiation which is aimed at the left over tumour and a drug called Temozolomide, which is a pill form of chemo designed for high grade brain tumours. Sarah and I were both anxious with the word chemo, but he assured us the best results for grade 4 tumour are surgery to remove the bulk of the tumour and the combination of chemo and targeted radiation. This chemo drug is a pill form that is aimed at killing the cancer brain cells and it doesn’t have the nasty side affects you associate with full body IV chemotherapy.  All Sarah’s world- wide research showed the best in the world agreed with this and more importantly I felt this was the right direction for me to take. So, I start chemo tonight right after going out for a couple of close mates for a couple of beers and then I get fitted for a radiation head mask and two hours of scans and tests tomorrow.
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I quite liked the oncologist’s comparison to diabetes that both things are diseases you will never get rid of, but you learn to live with them through drugs, attitude, diet and the choices you make.

It’s tough telling people of the diagnosis, particularly close friends and family but the hardest people to really explain what’s going onto is to my beautiful children, nine year old son Thomas and six year old daughter Molly. They understand I have had brain surgery and that I am back and forward to hospital a lot but they really don’t understand this. We have asked for a therapist to help us better explain this all to them. I am determined to win this race and my wife Sarah, my little boy and girl are giving me even more strength and determination to do this.
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I’m not ruling out all options to race this fast growing tumour down the track. Alongside the proven medical options I am open to natural alternatives. My sister Angie reckons I should get onto cannabis oil, and I have just come back from a very relaxing reiki and meditation session. My sister in law is suggesting other options I can throw into the mix whenever I am ready.  I’m not ruling out anything.
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I’ve found it really helpful writing this blog even though I didn’t have good news to pass on today, but I’ve enjoyed writing it and I feel really supported and spurred on by all of your support.
Look forward to talking to you on the next one…until my next post.
 

12 Comments
Joan Dwyer
1/25/2017 08:11:38 am

Hi Rob!
You will race this thing down the track! You're just getting warmed up!!! ♡♡ Sounds like you have a phenomenal Dr.!! Forever rooting for you and praying!! Love to you and your lovely family! xxxx
Joan and Kevin ( Sue and G.P.'s friends)

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Noel (Thatcher to Bob)
1/25/2017 11:49:29 am

Hi mate,
The thing I never ever heard you say over 20 years running together in the team was "I can't do xxxxx". As long as you have breath you'll push on and you have an amazing team and beautiful family beside you. Everyone in the U.K. Running community is with you mate.

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Andy
1/25/2017 12:33:14 pm

Graham and Naomi
1/25/2017 10:54:14 am

Rob you are an amazing! What a blog and what an athlete!
thinking and following! Love to you all! Graham, Naomi, Emma James and Sam xx

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Catherine Corbett
1/25/2017 12:33:03 pm

Well Rob...that is an awesome blog for such crap news! Still I feel so positive as I know you have got a unique, stunning attitude and the amazing support you need to fight this. Love you heaps and, as one of your many cheerleaders, am prepared to do outrageous dance moves to prove it! Talk soon xxx

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Sharron Kerr
1/25/2017 01:01:57 pm

We are very proud of you Rob. The strongest fighter ever! Love you lots Mutti and Da xxx❤️

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Graham and Libby Sims
1/25/2017 02:30:59 pm

Hi Rob
Libby has been updating me on your posts and following your every move since you shared your news with us all. I wanted to let you know that our thoughts are with you and your family.
Mate Your attitude ,strong will and competitiveness combined with the best of medical help and love from you friends and family will get you through this tough time.
As someone who has had my love one experience the uncertainty of cancer I know first hand what positive thinking and will power can do.
Keep doing what you have always done Rob and win this one too.
Cheers mate
Graham and Libby xx

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Kimberley Shaw
1/25/2017 06:55:57 pm

Hi Rob, I was eager to read your blog today and I am so glad that your sister Suzan has put it on her FB page for us to read. I so admire your strength and attitude whilst facing this hiccup in your life, I want to call it that because hiccups do go away. I believe your attitude will help you win this race, as Winston Churchill said Rob "Never never never ever give up", this is our family motto and we don't either. Until the next blog, stay strong and positive. Sending good wishes to you from Arizona. Kim and Ian Shaw.

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Therese Arahill
1/25/2017 09:58:24 pm

Yes Rob, by no means finished. I admire your strength and positivity. What an inspiration for your beautiful children. Your story is extraordinary as are you. Love to you and your family.

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Ginny Jenkins
1/29/2017 12:09:00 am

They say if positive attitudes increase survival rates by a third. In your case it sounds like 100%! Good luck, keep going and all will be well.

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Keiran Ashcroft
1/31/2017 01:46:28 pm

Hi Rob. I'm so sorry to hear this news but if anyone is going to fight this it will be yourself and your family. Don't think I've met another person who is so positive about life etc. Both our thoughts are with you and your family.

Keiran & Angie.

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Gordon Jones
2/19/2017 12:14:52 pm

Sorry my comment is late Rob.I read your blog " Not finished yet" &I then lost it .Today I found it again I've also read.the comments they sum up that you.are so positive.Also the admiration,love & best wishes for you @ your family from all.I can only add the same for you &a yours.Rob you are truly amazing.Best Wishes Gordon. ps. I read last night your latest "Going for the Direct Approach". I couldn't agree more.Go.for it Rob.G.

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    Rob Matthews MBE.  Paralympian
    Inspirational Speaker
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