When I was told the name of my oncologist, my friend immediately googled him. He had graduated in Pharmacy and, not content with that, he had graduated from the Royal College of Surgeons with an honours medical degree. Let’s face it, this chap was an over achiever. But isn’t that the very man you want on your side at tricky moments in your life?
He was relatively young and actually quite handsome. I text my friend that I thought I had met him one time in Coppers. For those of you who have never had the pleasure of Copperface Jacks in Dublin, it is an experience. A lot better for the ladies, I guess, as there are about 4 men for every woman – it’s THE best place to hear cheesy chat up lines and I doubt my over achieving oncologist has ever darkened it’s doors. But for a moment she was fooled and there was an immediate ‘oh you didn’t?’ text back. Hey, you’ve got to make yourself laugh on the dark days!
So off we went back to the Orchid Centre in Cork University Hospital. As this was my first time under the oncology team, it was a new start so everything had to be measured again, height, weight (urggh!), non smoker etc. My over-achiever turned out to be a lovely, very approachable man.
He explained that only 30% of melanoma patients had the particular gene to undergo the treatment he was suggesting to me and that I was very lucky to be in this 30%. I am not a lucky person generally – I don’t win raffles or competitions – so this was a new experience for me. Just to be clear, I don’t mean in life. In life I know that I am incredibly fortunate. I know that I was fortunate to be born into a lovely family, that I’ve already kicked melanoma’s butt once and that I will do it again and that I have a collection of amazing friends.
So I will try to explain to you, as I understand it, what my treatment will be doing. If you are about to go through this, please remember this is just how I have made it clear in my own head – it’s not very technical or medical.
The gene in question is not a hereditary gene, rather the gene of the melanoma. The BRAF test shows the oncologist whether or not this targeted therapy is suitable. In my case, it was. He prescribed two medications – Mekinist and Tafinlar. This combination is specifically for metastatic melanoma. Metastatic means it has moved from one place to another on your body – slippery little sucker.
He also explained that this medication must be taken exactly as prescribed as you can overdose on it – always nice to know. You need to have 12 hours in between each dose and you must take them either 2 hours after food or an hour before food. This doesn’t seem too difficult, but I will explain to you in a later post, it can become a real pain and definitely not conducive to a wine, cheese and nibbles night.
I would be on this medication for the next twelve months so the prescription needed to be made out to my choice of pharmacy. I wasn’t sure of the exact name of my local pharmacy so he googled it for me. Much hilarity followed between him and his nurses when a photo of the pharmacy popped up and they could see it also sold fishing tackle! Just as an aside, it also sells worming tablets for Roger, but I decided not to share that bit of information.
Before the treatment could start, they needed to make sure the rest of my organs were all working well and to give them a comparison for later on in the treatment. I was dispatched to have an ECG and an ultrasound on my heart. The ultrasound proved a little problematic as they needed me to lie on my left side. Sorry, no-can-do. They managed to work around it. For those of you ladies who have had ultrasounds for pregnancies, one for your heart is very similar. The same type of gel and machine but this time the sensor is pressed down into your chest. Needless to say any fancy underwired bra would hinder proceedings, but you are covered up to save your dignity.
Back in the Orchid Centre a nurse attempted to find a vein and take some bloods. Luckily she spotted a waste of time before puncturing me and as I would be back later that week, I agreed to see the lovely ladies in the Blood Room then.
All the tests completed and prescription in hand, we headed back home to pass on the good news to the pharmacy that I would be becoming extremely familiar with them over the next year.
I was to return to CUH in two days to attend my first immunotherapy clinic and meet my oncology nurse. It had been a very long day and by the time we got back home my left leg had started to swell badly. I did my newly discovered yoga pose which consists of shuffling your bottom up to the skirting board, putting your legs straight up the wall and your arms outstretched either side on the floor. It’s actually very relaxing and excellent for moving lymphatic fluid. But even then, I knew lymphoedema had set in.