On Thursday 15th June I was feeling progressively off, initially in the morning when I was with Bruce and Sharron and then I had a massage. Back home I was getting prepared to do a couple of massages myself but just didn’t feel I was up to doing both of them. I thought I would get through the 2pm appointment but when I finished Sarah could see I wasn’t quite right as she thought I seemed to be swaying around, very pale and generally feeling a bit weird. Sarah tells me I asked her to call Guide Dogs to find out about a replacement dog but apparently it came out as "Call the neighbour about getting a boat". My words were just jumbled and I couldn’t hear it.
Sarah was worried enough to phone our oncologist who suggested we head to hospital. She then phoned her ever supportive parents Bruce and Sharron to ask them to come over to look after the kids. Sarah kept trying to get me to rest but I didn’t want to. I moved out to the lounge to sit on my favourite chair and at that point I was only able to answer Sarah’s questions with one word ‘yes’ answers.
I know it’s been a while since my last blog, its funny how writing in those early days of recovery really gave me a sense of purpose, and perhaps it was a way to handle the boredom of endless hospital and specialist appointments. After the radiation was over I just got on with living.
A whirl wind of family made life feel normal again. Sarah and I found ourselves doing more than we ever did with continuous adventures around the north island playing tourists with my English family. I was back massaging clients and I even started training again riding 60km on Saturdays’ with my good mate Matt and I even got back to running which felt fantastic.
Things were back to normal, except the ongoing chemo treatments and visits to the oncologist to see that things were progressing as they should be.
I realise it’s been quite some time since my last post and thought I’d come out of my writing hiatus and let you know I’m still alive, kicking and doing well. In fact our family and I have been socialising as good friends and family have been arriving on a turnstile basis from the UK, it’s been all go around here.
It’s great to be able to report that I have now finished my first 48 days of chemo and 6 weeks of targeted radiation. I’ve been sent home with my radiation face mask as a keep sake; I’m not sure what I’ll do with it perhaps my son, Thomas, may have ideas. But it’s a relief that it’s all over and though I feel a bit knackered I feel I’m doing really pretty well, in fact I don’t seem to have any ill effects aside from having lost some memory which I’m working hard to get back.
It still amazes me that with my brain tumour and subsequent surgery that I can struggle to remember dates, peoples’ names and obvious words but at the same time I so clearly remember memories from my past.
My most vivid memories take me back to the early 1970’s when I was just a young whippersnapper. Like the excitement and novelty of getting our first family car when I was 10 years old. It was a second hand fawn coloured Austen 1100. I can still remember the evocative smell of the polish as I used my elbow-grease to buff the leather seats and the choking fumes blasting out of its old exhaust.
Telling people you’ve got cancer or that a loved one has died are difficult situations which can be received in so many different ways, sympathy, empathy, embarrassment or just not knowing what to say.
Interestingly enough I found revealing and talking about my cancer hasn’t been nearly as difficult as I might have imagined especially compared with breaking the news of Kath, my first wife’s, sudden death in 2003.
Whilst trying to comprehend this incredible loss I attempted to avoid situations where I might bump into familiar faces unaware of my awful news when they would mention that they hadn’t seen Kath around for a while. My initial reaction was to say: ‘That’s because she died’, but instead I stumbled through something nonsensical trying to break the news gently ending up having to play the role of consoler.
Along with everything which has happened in the last month perhaps our biggest learning is just how lucky we are to have such an amazing group of family, friends and supporters who have been there all the way to help ensure Sarah , the kids and myself get through this.
Opening the chilly bin at our door is such a surprise yielding fine delicious meals, goodies and even wine. We also feel fortunate thanks to kind offers of help driving either me to radiation or having our kids on play dates. All of which makes this experience seem so much more normal and doable. So thank you everyone, there are 8 weeks of chemo and targeted radiation to go so we thank you for continuing to be with us on this ride.
We had left the hospital feeling a bit grim after we were basically told that they wouldn’t be able to get rid of all of my brain tumour, but that their aim was to contain it. I wasn’t given a timeframe, but they did give us scenarios of patients who had done well and I really felt that I would be one of those. It wasn’t until the next day when we met our new oncologist, Dr Anthony Falkov, that we learned it was his objective with his plan of chemotherapy and targeted radiation to kill the tumour completely!
To be honest though my attitude hasn’t changed I am very positive and absolutely determined to beat this.
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.
Tuesday, 24th January at 9.00am is the date and time we’ve just been advised we will meet the oncologist. In this meeting we will be told the histology and the type of the cancer we are dealing with. All incredibly scary stuff. Apparently we’ll be seeing the radiologist next week too, but haven’t been told the extent of what is to come at this stage.
I’m not sure how and what I should be feeling but to be honest I’m certainly trying not to worry or think about it: what’s the point, how would it help anyway, what purpose would it serve so let’s get on with enjoying ourselves.
As I am writing this, I am aware that the rest of life goes on in it's wonderful way. My beautiful girl Molly’s sixth birthday has taken over the house, which gets matters in perspective. Her excitement is infectious and engulfs us all.
It’s been far too long since last I wrote and I can’t really blame my technophobia on this, but here goes...
So it's Day 16 after having my brain surgery and I wanted to share with all of you who have been so incredibly supportive to me and my beautiful wife and kids - how the journey has been so far...
I had never imagined how incredibly difficult hanging around hospitals trying to pass time between appointments having blood tests and popping pills was to be. Like having to wait round for late running trains or buses, as well of course that feeling of hurry up and wait at airports when it’s impossible to know when you’re leaving...
Rob Matthews MBE. Paralympian