News and events Patient stories NICKY HORTON - MY MELANOMA STORY My Melanoma Story My story starts back at Christmas 2016. I noticed a raised mole on my ankle which was rubbing on my trainers. It looked like a wart, brown and round and had appeared very quickly. Early in January 2017 I went to my GP who immediately referred me on the two-week pathway. Within the two weeks I was at Epsom hospital seeing a dermatologist, who took one look at my ‘wart’ and wanted it removed there and then. I also had my first experience of lymph node checks, I need to remember to wear matching underwear for any following appointments! The waiting then began, little did I know that this was going to become a recurrent part of my life. After several phone calls, chasing the results, I had a call to ask me to come back to the dermatology clinic the next day, just turn up after 12.30pm we will see you after clinic. Back then I had no idea this wasn’t normal, and that it was likely to be bad news. I’d never been ill, I’d never been involved in how hospital appointments work. So much has changed in the last two years. I rolled up to the hospital on my own, I’m sorry they said, your mole was skin cancer, malignant melanoma, you will need another operation. Ok, I guess if you are going to get cancer there are many worse ones than skin cancer, just chop it out and I’ll be fine. I had no idea how wrong I was, the look from the dermatologist said it all. I was referred to St. George’s Hospital in Tooting, scans were planned, bloods taken, and I met the most amazing skin cancer nurse. Lots of leaflets to read and information to take in. Maybe it wasn’t going to be such a walk in the park. The wide lesion excision and sentinel lymph node biopsy was booked for the end of March, it wasn’t going to be straight forward, where the mole had been didn’t have enough tissue for a skin graft, so they were going to have to take tissue from my calf and move it down to my ankle and graft my calf. Known as a sural flap, and it wasn’t done very often. I had no idea how life changing this was going to be, naively I thought I’d be back on my feet in a couple of weeks, back at work, driving the school minibus to Wales on an A Level Biology trip. I worked as a senior science technician in a local secondary school. The operation took five hours, I was in hospital for three days recovering. I was non-weight bearing for two weeks so that the flap would take and then another 4 weeks hobbling around on crutches. During this time I was waiting for the results of the biopsy to see if the melanoma had spread. Lots of dressing changes at the clinic and from the district nurses followed, they were all amazed at what I had had done to my leg. It felt like it had been massacred with severe nerve damage, shooting pains and pins and needles. Two weeks post op. At the beginning of May I discovered that the melanoma had spread to two of my lymph nodes and that I needed to have the rest of them removed, a complete lymph node clearance from my groin. Another operation didn’t really bother me more that I had not been able to shower for 6 weeks and my wounds were nearly healed and now I was to have another 30cm scar from my tummy to my thigh. Strip washing every morning was getting very tedious. Luckily, I had found an amazing Facebook group called ‘melanomamates’ who gave me so much information and support about the operation and what to expect. I also made virtual friends with people having the same operation at the same time. Five more days in hospital, heaps of pain, unable to move my leg, I.V. antibiotics through painful cannulas, and drains to drain the excess lymph fluid that no longer had anywhere to go. No longer being able to stand or sit for any length of time without being in pain due to the fluid build up in my leg. More nerve damage due to the operation, majority of my leg was now numb and still is two years on. Mid-June and I’m back in hospital as I have an infection in the drain due to a blockage. More IV antibiotics and thrush again, such fun. A new drain was fitted under ultrasound as I was still producing too much lymph fluid, very unpleasant and still not able to have a shower. Finally, by early July things were getting better, drains were gone, back to work, organising trips and helping with the school production. Then great news that PET/CT and MRI scans were all clear. The melanoma hadn’t spread. August and school holidays, back to light gym classes and less hospital appointments, the future was looking brighter. Then in October I noticed a couple of lumps on the leg where I had had the operation. A fine needle aspirate was taken and a week later they confirmed that it was melanoma. Another operation was planned, the third general anaesthetic in less than 10 months. It felt like I was back on the rollercoaster again, CT scans were done which thankfully came back all clear. February 2018, a Saturday morning at the gym and I noticed a new lump on my arm, I knew what is was straight away, then checking my leg I found a couple more lumps. Back to the clinic, thankfully this time they were happy to remove them under local anaesthetic. I also got waterproof dressings, so I could still shower, it’s the little things! All the lumps came back as melanoma, but due to the distance of the metastases I was now stage 4. Another CT scan was done, only 12 weeks after the last one, but this time it showed that the cancer had spread to my brain. Into the MRI machine, not my favourite place, ten tiny tumours, goodbye driving licence. Then the hardest hospital appointment, meeting my oncologist for what will happen next. Luckily, they had secured funding for a brand-new treatment as I was young and had no side effects from the tumours. The immunotherapy had a 60% chance of working and if it did the side effects could be severe, most likely ending up in hospital and on steroids. If it didn’t work, then I probably had two to three months to live. It really isn’t just skin cancer, if I had had this five years ago I probably wouldn’t be here now. The treatment started very quickly, long days at the hospital, blood tests and infusions, something I would quickly get used to. Thankfully I had no serious side effects, the treatment attacked my thyroid gland which stopped working, so grateful that this could be easily treated with tablets. The pseudo progression (tumours getting bigger due to the treatment not the cancer growing) was unpleasant, my thigh muscle was like a rock and many more lumps appeared. But within six weeks they had completely gone, the treatment appeared to be working. I felt well and carried on working during all the treatment, it was the place where I could be normal, just me, not a cancer patient. I also had stereotactic radiosurgery on the tumours in my head. This was done at the Royal Marsden Chelsea. Having your head press studded to a bench via a plastic mask is not much fun especially when you are fairly claustrophobic. Sedatives and a good music playlist to listen to got me through the two and a half hours of treatment. I completed the first part of the immunotherapy treatment at the end of May and a CT scan confirmed that the treatment was working, we could breath a little easier. The brain was almost clear, and all the intracellular metastases were gone. I could now commence the biweekly monotherapy to keep my immune system boosted and fighting the melanoma. The next set of scans were in October and hooray they were all clear, the cancer had gone, no evidence of disease. New guidelines were published allowing the immunotherapy to move to once a month, finally less hospital appointments. I would need to be on the therapy for two years so that if in the future the cancer came back I would be allowed to have the same treatment again. I am now two years on from the first big operation, the pins and needles, numbness and leg elevation are constant reminders of what I have been through. One year on from being diagnosed as stage four and I am still cancer free, life has changed massively but I won’t let what I have been through stop me. Despite my diagnosis and unknown prognosis, scans every three months to make sure I stay cancer free, I carry on doing what I can, living every day. Healed leg, two years on. The immunotherapy makes me very tired and I can no longer do my job to the best of my ability so I took the hard decision to take early medical retirement. I miss working but am enjoying being at home more and spending more time with my family. Despite everything that I have been through over the past two years I have still carried on living life. I went to a rock concert with a drain still attached to me, and on the evening of my first immunotherapy treatment I was at another concert. Standing during concerts is painful but I won’t let it stop me enjoying live music. The gym is one of my happy places, attending classes with friends, doing squats and lunges. They may be hard, and it often hurts but all the time I can, I do, and it makes me feel better. I also love walking, I am in the least amount of pain when I am walking. I walk most days training for the long walks that test how far I can go. The biggest challenge I have taken on so far walking 55km from Eastbourne to Hove last August, across the beautiful Seven Sisters and along the south downs. It was hard and by the end painful, but then if wouldn’t be a challenge if it was easy. My leg reminds me every day that I have had cancer. I can no longer stand in a queue, the cinema and theatre can be tricky, I plan when I use public transport, so I don’t have to stand for too long if it is busy, an extra chair when we go out for dinner. My new normal. But I am cancer free, I am still here, and I have lots of plans and things I still want to do.