My name is Kay, I am from Ireland. I’m 46 years old now but when I was 33 I had a mole on my back that became itchy, the mole had always been there, and at some stage had begun to change or evolve. I visited my GP I was living in London at the time and he referred me to a walk in clinic later that week at the hospital to have it checked by a dermatologist. It was very busy and I thought about leaving it was such a silly thing to be wasting time with, I had my baby boy with me and he was getting grumpy. Soon thought the queue started to move and I got seen. I was asked about my sunburn history and sunbed use, also my family history. They decided that the mole should be removed, but I didn’t get called for surgery for a few months I had telephoned to see why it was taking so long, the waiting was difficult, although I wasn’t overly worried it was on my mind a lot.
After I had the surgery my results came back it was melanoma. I was given wrong diagnosis staging, I was told it was a stage 4 melanoma. I didn’t understand and when I got home I looked on the internet, at this point I was certain I was going to die. It really was a very traumatic time I had three young children one a baby. I decided to go on a clinical trial to hopefully prevent the cancer from returning. Unfortunately it wasn’t effective so they stopped the trial earlier than scheduled, it later came to light the new drug was potentially speeding up the progression of the disease in patients who had a relapse, I was never informed about that and found out for myself by studying trial reports online many years later. It’s the reason I believe now that patients need to be better informed about their treatment choices.
I was disease free for just over ten years when I became incredibly ill, I had a chest infection that wouldn’t get better, a painful hip and I’d lost weight. I was hospitalised and scanned as an emergency. The doctors came and broke the news to me, they could no longer do anything surgically I had metastatic melanoma. This time I really was Stage 4. I was so ill, I wasn’t even in shock, I just wanted someome to take the pain away for me. I met a new oncologist who prescribed a medication called Braf inhibitor it began working straight away I was also taking oral morphine for pain relief which helped me eat again and gain some strength back.
A couple of months later I started another drug called a Mek inhibitor which I got on compassionate access from the Pharma company, I’m very grateful for that as I wouldn’t be able to access it otherwise. I had some side effect problems that meant more time in hospital, but have been able to tolerate the treatment very well and I am now disease free. But it’s not a cure, it will come back and so I have to continue on my medication while it works. For me this has been three years so far.
It’s given me valuable time with my family that’s been priceless to us. It’s meant time for new drug developments that might benefit me when my current medications stop working. People say in a blasé way, “we all have to die of something”, but living everyday with the knowledge that you have a stage 4 cancer is incredibly difficult, it affects all aspects of your life sometimes physically but even more so psychologically. I’m in a good place right now, I feel healthy and try to exercise daily, and eat well. I keep myself busy as possible, I have become very involved in patient advocacy, and campaigning for access to new treatments. I am completing a Patient Education Program so I can learn more about our clinical trials, drug safety regulation and drug reimbursement so I can help other melanoma patients. I don’t like to dwell on my prognosis even though I have accepted it is not good. I never think “why is it me, because the answer is it could be anyone, cancer didn’t pick me out because I’m special, I’m just an ordinary person like anyone else xxx