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.
In the time Sarah was out of the room to grab the hospital bag, Bruce walked into the lounge to find me convulsing in my chair. The next 10 minutes Sarah, Bruce and Sharron describe as feeling like a lifetime as they stayed by my side assisting me through a brain seizure.
The whole time Sarah spent talking to emergency services over the phone learning what to do step by step particularly getting me off the chair onto the floor, which she learned isn’t easily done when a big ugly bloke is bouncing around with his arms and legs and face contorted moaning loudly trying to breathe. My wonderful family did an incredible job holding it together until the ambulance arrived, taking over. It is mind blowing to consider having absolutely no knowledge or memory of those events. I was unconscious when the ambulance arrived having lost the use of my arm with my hand locked up like a claw.
Bruce looked after Thomas and Molly in the bedroom who were obviously both worried about what was happening with their daddy on the floor.
We sped to the hospital into resuscitation for testing and observation. Never a dull moment around here. In the bed next to us a guy was brought in with a dislocated arm. The emergency team almost knocked him out to pull it back into place when unfortunately he woke up screaming and swearing like a sailor. On the other side of us a 27 year old was brought in without a pulse given CPR by multiple nurses and we could hear the paddles shocking him, the adrenaline being injected and the Dr shouting ‘Does anyone have any other ideas’ as they kept trying to bring this young guy back. Sarah grabbed my mobile and searched for Queen my favourite band so we had music to take our mind of all this craziness going on around us. Funnily enough the first song to come up by Queen was “Keep yourself Alive’. Nice one.
Anyway, it was almost humdrum comparatively as I was sent for a CAT scan to see whether there might be a brain bleed or increased growth of my brain tumour which might have brought on the chronic seizure. Fortunately it was neither, rather caused by a massive brain swelling.
I was kept overnight for observation to be sure that I didn’t have another seizure. I was still very muddled with my speech and I had no idea where I was, my name or the name of the NZ Prime Minister which I have discovered appear to be the standard go to questions for hospital staff.
There was a big bed shortage in the hospital so I was put in the last available bed in the stroke ward. It was a large room with many others and I was put in a space that would be impossible for me to navigate unguided to get to a toilet or get help if needed. There was also no chair for Sarah, making it impossible for her to stay but she was very concerned how this was going to work for me. When the nurse on the ward explained to Sarah that they wouldn’t be able to get to me regularly with such a big ward and limited overnight nurses, she made them agree to wheel my bed so I slept in the corridor right in front of the nurses station so they could monitor me overnight for seizures and be there for me if I needed assistance. When I was moved and my lioness wife Sarah had got me somewhere better to be monitored, she went home to rest.
In the morning my brain had settled down, I had full use of my arm, slept like a baby with no overnight seizures and not to mention I was making sense again; although some may contest this assertion. After a day of tests and MRI scans, along with coaching for Sarah on what to do in case of another seizure I was discharged from hospital.
Once again thank you so much my gorgeous wife, as well as Sharron and Bruce for being there and for handling this very scary time and for looking after our little ones as well.
On 27th June, I had a PET scan, which lasted nearly two hours. This scan shows a great more detail then the MRI or CAT scans. The upshot of this all is that the tumour that remains from the surgery back on 29 December 2016 is still there and it is still active. The chemotherapy and radiation to date has done its bit to reduce the tumour somewhat and to keep it from growing larger or appearing in other places which is positive. However, my oncologist told me that I have a gene that stops the chemotherapy pill that I am taking from being as effective as it might be. It was time for alternative suggestions
One of these was a drug called Avastin, which is still reasonably new to the market and we were told it was non funded and we would need to come up with $90,000 for 6 months’ worth of drugs. Literally a hard pill to swallow!
Sarah, who has turned into a powerful medical researcher these days, searched the internet, alongside my sister Sue who lives in the Caribbean to find out more about the drug. The very scary side effects which include internal bleeding and strokes amongst other terrible possible side effects such as deafness made the decision for us all. This was not a drug for me. Back to the drawing board.
Our oncologist was brilliant at quickly making a suggestion on another chemotherapy drug called Etoposide, which has some proven results for extending life expectancy and also a concoction of other drugs which are used for other purposes like diabetes, managing cholesterol etc which have shown they can also assist in giving the glioblastoma cancer cells a run for their money.
Sarah began me on this new regime of drugs, literally a handful of them. Chemotherapy pill, anti-seizure pill, anti-nausea, anti-inflammatory pills, and at least another 5 with which I’ve lost count: Needless to say they all have their part to play.
I have also been offered the chance to re-radiate the left over tumour which gives us another opportunity to fry this sucker. We are also applying to get permission to use medicinal cannabis oil as there is a great deal of proven research on how cannabis oil shrinks brain tumours and in some cases even gets rid of the tumours completely and we are concentrating everything at this fight.
I continue to stay strong and focused on getting on with my life, exercising, working and spending time with my beautiful family. I’m still waiting to hear back from guide dogs re getting a new dog which sounds like it may possibly be in August. Things are starting to feel more promising.
From 'Keep Yourself Alive' by Queen...
I was told a million times
Of all the troubles in my way
Mind you grow a little wiser
Little better every day
But if I crossed a million rivers
And I rode a million miles
Then I'd still be where I started
Bread and butter for a smile
Well I sold a million mirrors
In a shopping alley way
But I never saw my face
In any window any day
Now they say your folks are telling you
Be a super star
But I tell you just be satisfied
Stay right where you are
Keep yourself alive yeah
Keep yourself alive
Ooh, it'll take you all your time and money
Honey you'll survive
Rob Matthews MBE. Paralympian