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...
All of which are familiar to us all, but somehow waiting for anything to happen in hospital takes the wait onto another level as time seems to stand still. The minute hand seems to be totally relaxed, forgetting to move onto the next quadrant of the clock face. All of which making emotions much worse because of the reason you’re actually there.
Regular interruption of rest was understandable for ingesting a variety of drugs, checking my blood pressure and temperature, then the blood thinning injections in my stomach to ensure against blood clot.
We kept within the confines of the hospital as Sarah was understandably afraid of wondering too far from the doctors and missing an appointment for an MRI scan, CAT scan or whatever else they were throwing at us. Even so thankfully for my peace of mind we went outside the hospital to the park next door. It which was a wonderful feeling to leave the bubble of the air conditioned, clinical hospital environment and to smelling the fresh air, hear the birds and the sound of water fountains. It wasn’t a massive exertion to get there but it helped to make me feel much more relaxed and like we had a normal life if only briefly...
It really was the scariest time of my life being wheeled into the operating theatre. Letting go of Sarah’s hand in the pre op ward to go through to theatre was incredibly hard. This was just so big, I was thinking ‘would I survive this operation and if I did would my life be the same’. I didn’t know if I was shaking from nerves or because it was really cool in there.
I had never been into hospital before for any operation. Dad died of lung cancer at 73yrs, but he’d smoked all his life. I’ve always been really fit and healthy so it seemed unfair to have this thing in my head. I guess I was saving my first operation for big one!
The anaesthetist had a great way about him and very soon I was relaxed, comfortable and the next thing I knew I was waking up. For the operation I had to be flipped onto my stomach and held in place there by what felt like a couple of screw nuts on either side of my temple. Before I went into surgery the anaesthetist explained how they needed to take care of my eyes and soft tissues as during a 4 to 5 hour operation tissues can be compromised for lying facing down for all those hours. He knew that I was blind, but my eyes don’t actually look blind and wanted to keep them looking that way. The surgeon, Mr Mee, told me how they had to work hard as I was a good bleeder loosing quarter of my blood supply apparently. Sarah was convinced for days they’d let too much down the plughole because of my yellow tone and my balance issues, but they assured her that a blood transfusion was unnecessary.
And so into recovery. The operation was over around 6 pm but it wasn’t until 8pm that I was able to see Sarah: apparently my first words where ‘hello darling, give us a kiss”. I heard Sarah breath out her first sigh of relief in days since we were told I had a brain tumour.
The tumour was situated towards the rear left side of my brain where sight is controlled. I was born with a deteriorating eye condition, by the age of 20 all useful vision had gone so really the doctors didn’t need to sweat too much about aggressively removing the tumour from the visual part of my brain. But, very recently I had been made aware that blind people with the same condition as me were learning to see again through break through stem cell research injections into their eyes. My first thought was, would my opportunity to see again be lost now with this tumour being removed?
I have since found out that just one eye would be affected by the tumour’s position on my brain and who knows there may still be a chance of my seeing my children, Sarah and the world again.
I was allowed out of the High Dependency Unit after only 24 hours. The way Sarah later described the despair in the high dependency ward was overwhelming. She spoke of people who possibly a few days before hand had normal, functioning lives who were now in coma’s or paraplegic and all of them fetching the same shaved heads with large stapled wounds. Their families like walking zombies at their sides. I am so grateful to my neurosurgeon Mr Mee and his team for doing such a fantastic job. They had told me going into the surgery based on the scans that they would aim to remove the bulk of the tumour 90% or more, but they would not go after deeper bits of the tumour that would compromise my life and make me like the poor souls in this ward. When Mr Mee came to see us after the surgery he told us positively that ‘they got most of it, if not all of it’.
I couldn’t get out of the high dependency ward fast enough and within 8 hours I was up and walking, guided by Sarah to the showers. It didn’t take long to get into a recovery room of my own where I remained for five more days before getting discharged to come home.
Day 3 and the neuro surgeon unveiled my head and I got see my head for the first time. I could feel the horseshoe shape wound on the left hand side of my head and I could feel the bumps of the 41 metal staples holding it all together. Sarah brought me a new hat from a shop called ‘Hattitude’ to cover the wound from the sun and also not to freak the children out until they got used to the look of it.
I have been put on steroids to reduce the brain swelling. The main side effect is that I am pumped up and not able to sleep. I get why these steroids are performing enhancing drugs as I’ve felt energised and like I need to get going! Sarah keeps trying to slow me down and make me rest and protect my head wound. I couldn't do that in hospital, I just wanted to get out of my arse- flashing hospital gown and get on with my life!
Although the drugs make me feel alert and I really did come out of the surgery the same person I had always been, I have been left with a few speech issues and memory blocks. It’s been pretty frustrating not being able to think of a word I want to say, remember a fact or even remember how to use my phone or computer. The surgeons explained that the tumour was situated next to the area of the brain which controls speech and cognitive functions and that when the swelling and pressure diminishes then service should slowly be resumed.
Typing my thoughts has been interesting as words get jumbled and dates and numbers come out all over the place. According to Sarah I was telling the docs that it was April 1984 and that Margaret Thatcher was the prime minister of New Zealand just before surgery, so things are definitely improving now! This week begins a series of visits from Occupational Therapists and Speech Therapists who’ll help with finding my words and use my computer.
Pathology results have been delayed due to the holiday season but we will meet the Oncologist this week and then in another 3 or 4 weeks should be meeting up with the surgeon once more when I’m expecting to learn about what we are dealing with and what we do next. All of this is nerve racking and hard to contemplate.
The funny thing with forgetting words is that I’ve kept needing to ask Sarah what the thing in my head is called… it’s like I keep blanking that I had a brain tumour and maybe it’s my memory loss or just a way of not worrying myself too much about it.
I’d really like to take this opportunity whilst writing this post to thank my in-laws Bruce and Sharron Kerr. I owe them such a debt of gratitude for their support and love in helping look after Thomas, Molly, Sarah and myself, it means such a hell of a lot to us.
Thanks also to Pete and Michelle Ensor who are always there with a meal, healthy food advice and to help entertain our kids. To my sisters, Angela Matthews- Toumi and Suzan Angelini, thanks for your daily phone calls from the UK and Caribbean. My sister in law Veronica Farmer who flew out from Australia to camp out at our house to look after our kids. Marcella Thomas for arranging the wonderful food app, thank you everyone for the meals that are being dropped off they are so appreciated. Matt Bailey who is like a younger brother to me and a second Dad to my guide- dog Zorro, thanks for looking after my fur child for me mate and taking him on long walks. Lastly, thanks for your messages of support on Facebook, I feel well loved and in a good space. Until my next post….
Rob Matthews MBE. Paralympian