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.
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.
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.
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.
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.
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.
Rob Matthews MBE. Paralympian