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.
Sarah is the backbone and engine room behind beating this little blighter. She’s been doing a wonderful job of watching my back, ready with the hydration, support and advice as well as holding everything else together including the kids, our household, working where she can and dishing out my cornucopia of drugs. Ideally, we should have taken steps before now to get home help to enable Sarah to get back to work but things are falling into place... ‘Slowly, slowly catch the monkey’. .
Targeted radiations starts on Wednesday which is another big step forward. To do this the specialists at the radiation unit have made a customised mask covering my face from ear to ear and chin to forehead.
I wasn’t at all sure what to expect with the radiation mask other than knowing my face would be totally enveloped in plastic leading me to wonder whether claustrophobia might be a problem but I needn’t have worried it was a piece of cake. The mouldable piece of approximately five millimetre thick lime green plastic was made pliable by placement it in hot water for four minutes and when sufficiently cool was gently pressed and moulded over the contours of my face.
It was such a relief to discover how comfortable the mask felt and what looked like perforated plastic breathing holes covering the entirety allowing me to breathe without hindrance. When the mould was shaped and set I was able to look at my face in a completely different light. With my keen sense of touch I followed the contours of the mask, faithfully following the lines of my face. Did I really look like that? My brother in law, Damian Kerr, thought I looked really sci-fi calling me “Robocop”.
The next stage was staying in position on my back on a rock hard metal table which became my automatic chariot to ride me through a rather chilly doughnut shaped machine called a CAT scan. The room was freezing as the machine operates best at a low temperature, thank goodness for the blankets. The purpose of this trip through the tunnel was to take images of my brain and plot the exact plan of attack to send targeted radiation directly at the small amount of tumour left after the surgery.
I left the clinic that day with my first lot of the 42 chemotherapy pills I daily have to take. I have now completed week one of eight and so far so good. We were issued with specific instructions that no one but myself is allowed to touch the chemo drug to limit the possibility of contamination from the poison. Sarah was told to use rubber gloves to transport the pill from pill bottle to my hand, then I just pop it. I am getting used to taking this toxic pill pausing for a few seconds while considering what it is I’m swallowing and then what it’ll help achieve. An hour prior to swallowing the chemo pill, I’ve been advised to take an anti-nausea pill and antibiotics to guard against infection.
It’s been brilliant slowly getting back into exercise which is further given me a sense of purpose and drive. The drugs are doing their thing but I can also do my part in fact the specialists told me to do as much as I can by working on my fitness and building up at least some of the muscle tone and fitness lost in hospital.
Feeling deep inside myself knowing I will beat cancer I knew riding the tandem wouldn’t pose any difficulties. Climbing the 800m hill from Onehunga to One Tree Hill was testing and rewarding but the legs were strong. I felt so alive and invigorated cycling along with the fresh air in my lungs and wind on my face it was brilliant to get my legs pumping again. As we headed back home along the waterfront I was reminded why I enjoy living in the Eastern Bays– the briny smell of the sea, the sound as the sea ebbs and flows, the children playing amongst the rock pools. It was a lovely summer’s day made even better by the flat white and rather scrummy cream cake. As long as I am cycling I am just Rob and not a cancer patient. I am getting my life back together and it feels fantastic.
I hope you are enjoying the blogs. I’ve been giving thought where to take this… no firm decision as of yet, but I do have a few ideas.
Until the next blog...Cheers for now
Rob Matthews MBE. Paralympian