News and events Patient stories MARK WATSON SHARES HIS FIGHT WITH MELANOMA Mark Watson V Melanoma Story so far My name is Mark I am 57 years young full of life and ever hopeful so this is my story and my encounters with melanoma/cancer whichever word you prefer. My first encounter with cancer was really when I was 17 when my Dad came home from taking my mother to hospital in Bristol (Frenchay) he gathered the four of us (2 sisters and a brother) at the foot of the stairs to tell us that mum had been diagnosed with cancer and it had spread. Mum had had a mole removed from leg some years before and the cancer had come back annoyingly. She had gone to the Doctors some weeks before Christmas 1979 with a persistent cough. Our normal family doctor was on holiday but the locum said it was a chest infection and prescribed some antibiotics. Three weeks later Mum still coughing went and saw our Family doctor who promptly sent her off for tests but by then sadly it was too late. See early diagnosis can be a lifesaver and education and self-awareness of your own body and knowing what to look/feel for can greatly increase your chances of survival. That was 40 years ago and back then there was no treatment such as we have today. 6 months later my mother passed away and although it seems a long time ago certain things I remember like it was yesterday, visiting my mother in freedom fields hospital and the comfort from Dr.Sheila Cassidy who looked after her until the end. Emotions ran high that day it was only 6 months earlier on my 18th Birthday we buried my Grandfather and now here in July we were saying farewell to my Mother. 1980 was not a great year for us and even now I still struggle to deal with it. I sometimes find myself talking to my mum as if she was there holding my hand as I journey through this path to an ever hopeful recovery, and wish she could tell me it will be ok. So onto 2003 when I caught a mole on my arm whilst moving furniture, a nail hadn’t been hammered in properly. I was due to go on holiday so up to the surgery for my jabs and asked my doctor to have a look at this mole. It had scabbed over and bled but the scab just never seemed to go away. He told me to go on holiday and when I got back to make an appointment and he would remove it, happy days so off we went to Turkey for 2 weeks. On my return I made the appointment and got the mole removed and waited for the result of the biopsy to arrive. Imagine my horror when I got home one evening to see the Doctor on my doorstep I know it’s unusual but as he was a friend and local rugby referee me as a player that’s how we knew each other. He was hoping to catch me before a letter from Derriford Hospital. He sat me down and explained the next steps and the 5-year check-up plan. Well although the report wasn’t good news and the surgeon wanted to take a bit more flesh off me (Flesh no fat removal bah) so back into Derriford for a wider incision to ensure they got it all first time. I duly attended every appointment but ensured my workplace knew what was happening they were very good and supportive. 5 Years went by and all was good at the end no need to attend any more but just check yourself over in the shower now and again, Great relief. Move on now to 2013 I have been declared clear and five years clear. Am on my way home from work driving the last mile or so before turning into our estate when I felt my neck was wet. As you do I put my hand up to feel what it could be … blood where’s that from I wonder I turned my rear view mirror to see and a mole on my neck had caught on my shirt collar and started bleeding. My local doctors was on the way home so I popped in (as you do) and asked for an appointment and explained why. Ten minutes later I’m sitting in his room and explaining my history and he asks “What would you like to happen?” Cut it out says I Well now I’m sat in Royal Devon & Exeter waiting to be pumped full of an isotope to identify the lymph node causing the problem. I was told this one here and there is a slight shadow on this one too Cut them both out says I no point in coming here again is there to go through all this again So 2 nodes removed and another 5 years of check ups to look forward to or so I thought, Didn’t think too much of this just routine Well three years on and I’m on the last of my three monthly check ups when the nurse gets right in under my right arm and stands back hmm she says and has another dig This doesn’t look good I think as she goes to get a doctor and he has a dig and says “You did well to find that one” We need to take a fine needle aspiration to determine how or if we need to treat that” Here we go not again surely Up to ultrasound dept for the FNA as they called it and await the results Couple of days later, you know it’s not good news when the results come back quickly No it wasn’t great news is was another naughty node that had to be removed and this meant undergoing more surgery to remove it. Time to meet the plastic who had drawn the short straw. My good friend Lochie Currie from the village where I live On to June 13th 2017 and under the surgeon’s knife three days in Derriford and a visit from Lochie each morning to see how the wound was draining. After three days I’m allowed home as the modern belief is the patient recovers better where they are comfortable. I was signed off work for 12 weeks (Happy days you may think) this encompassed Christmas so I was able to save my leave for another time yaaay During those 12 weeks and once I was off the drains I took to some light physio work just moving my arm slowly up and down a wall almost walking it up and down but soon found my strength slowly returning. I did some tiling as that’s gentle movement with a light weight small tiles don’t weigh much do they? And plenty of painting with either a roller or brush, gentle movements up and down strokes to get movement back in my arm So moving forward and a CT scan was required to check all the naughty bits had been removed and the result of that was all clear but I was to have second scan and a date to be confirmed. I went home happy that day Second CT scan some weeks later and again to report to Derriford to get the results. When you’re sat in the waiting your mind plays tricks on you but having had the clear on the first I wasn’t expecting anything different this time. So when the plastic surgeon and the Macmillan nurse come walking towards me I knew it wasn’t going to be good news at that point I wanted to run from that place as far as I could I knew I didn’t want to hear what they had to tell me but on the other hand I knew I had to. I wished my Mum was there to hold my hand and tell me it was going to be ok but I had no one this time. So into the private room and listen to what was going to be said. Lochie (My mate the Surgeon) was as upset as I was after all it couldn’t have been easy to tell a friend sorry mate but it’s spread to several sites within your body, Lungs, Liver, Spleen, Peritoneum (membrane lining the cavity of the abdomen and covering the abdominal organs) Sacrum (a triangular bone in the lower back formed from fused vertebrae and situated between the two hip bones of the pelvis.) The Macmillan nurse Ruth Devlin was fantastic she held my hand and explained what would happen next and the treatment I would receive and was I happy to proceed with this course of action. Well I said what’s the alternative just wait for a tap on the shoulder and off you go. I suppose having played rugby since I was 11 at school and then club at grassroots level you never lose that competiveness so accept the treatment and take the pill because you never know what breakthrough is round the corner. I think back to 1980 and what my Mother went through with skin grafts etc and think how lucky I am we caught this so early and the available treatments we have today, The NHS is truly wonderful. At this point I felt assured I was in the best hands and they are here to help me in my struggle to beat this disease, it was then Lochie said I was to avoid spinal compression of any sort so that means no more rugby and gym work to be kept to a minimum. Pity I played a full game that weekend before this meeting Oh well at 55 I was probably nearing the end of my playing days but having it taken from me like that I wasn’t happy because it was not how I wanted to finish and the decision to retire from the game had been taken away from me. I still coach the lads and they were very supportive but how I long to play but I know I shouldn’t. Coming out of that meeting all sorts of questions go through your mind yes they caught it early but how long have I got? How will I cope with work? When will I have to stop doing other things I enjoy, when my mobile rang it was the wife asking how did it go? …… I’ll tell you tonight when I get home was my answer I didn’t want to speak to anyone or tell anyone what was really going through my mind. I just wanted to cry out for my mother and have her hold me and feel safe in her arms away from everyone and everything that could harm me. I remember getting to my car and breaking down but eventually, I had to face the rest of the world and my competitive spirit had to take over and make get on with my life however long I have. Why me I’m only 56 (Had a birthday since the op) I’m strong as an ox and all that is going to leave me to feeble old man state I was getting angry and this made me more determined to beat this by any means but Tracy (My wife) said don’t go back to work you are to come to my place of work and tell me all of it. She’s been my rock and strength at times during the early days and I know it sounds corny but I really wouldn’t have got through that without her. It’s fucking back that bastard cancer is back for the third time why won’t it go away and leave me alone I got to Tracy sat down she put her arms round me the rest of the day was a bit of a blur I didn’t go back into work that week I didn’t want people saying are you ok can I do anything to help because to be honest I didn’t want to tell anyone I didn’t want their sympathy it was something I had to deal with myself before telling anyone else and I dreaded having to tell my Dad which I regret for having put off for so long almost 12 months. I told my sister about 3 months after finding out she just asked the right question and couldn’t not tell her. WOW time to take a breather and reflect So treatment started with immunotherapy what is that I hear you ask Cancer immunotherapy, also known as immuno-oncology, is a form of cancer treatment that uses the power of the body’s own immune system to prevent, control, and eliminate cancer. educate the immune system to recognize and attack specific cancer cells Boost immune cells to help them eliminate cancer Provide the body with additional components to enhance the immune response So I started on a course of Pembrolizumab (Keytruda) this was intravenous for a couple of hours sitting or lying in a ward for a couple of hours every three weeks although a straightforward procedure by the time I got home I would have to go to bed because by now the drug was working and this can very tiring and I’d sleep from about 5pm through to about 9am the following day and feel pretty tired for the rest of that day because the drug was working and attacking the cancer cells I’d normally take three or four days off work because I’d feel tired from this and some of the side effects can be pretty harsh, I’d wake up soaking wet from this, various aches and pains usually in places from injuries or previous surgery. This course of treatment went on for about 32 weeks or ten treatments then the consultant Dr. Martin Highly suggested we switch to Ipilimumab (Yervoy) this drug is usually for a maximum of 4 treatments , side effects with this can be fatigue, diarrhoea, skin rash, and itching fortunately I only felt tired. What happens after that I thought … what else can we throw at it? So we are now 12 months on from the surgery when Dr Highly says he doesn’t think this drug is working as effectively as it should there are some positives and the large lesion on my liver has shrunk as he can see on the last CT Scan. My wife has been reading about trials of a new drug on the market which are currently being conducted in Poole Dorset. Meanwhile I am still at work and my managers have been brilliant with the amount of time I have had off due to my condition. The company doctor has signed me off as I found walking any distance a real chore and walking the 5 flights of stairs to my office (No lift available) extremely tiring due to the fluid I was carrying around the Peritoneum. This was to disappear shortly after starting my new treatment as below approx. 14lbs of fluid no wonder it was difficult walking and it was depressing at the same time not being able to walk any distance. As an amateur photographer I would walk miles across Dartmoor most weekends with Tracy or along the coast at sunset for photo opportunities. It’s now December 2018 and I haven’t had any treatment for about 2 or 3 months, my bloods have been up and down but now I seem more stable and my wife enquiries about the trials in Poole Dorset using Dabrafenib and Trametinib which the consultant is aware of and is hoping to get into Derriford within the next 3 weeks. I’m in what next the results have been shown so far to be good and after all what have I got to lose…..Nothing all gains as far as I can see from reading the research findings so far. December 10th my wife and her hockey club raised £1500 in aid of Melanoma UK. Plym Valley Ladies held a raffle of Hockey equipment donated by sponsors and Manufacturers of hockey equipment, even from New Zealand (OBO) such enthusiasm from the club was overwhelming and I am grateful to them for the time they put into this especially my wife Tracy who organised this event with the girls and the pub where it held. People from all over Devon and Cornwall bought tickets to raise money for Melanoma UK and I’d like to thank each and every one of them. I am now on a trial of Dabrafenib (2 capsules twice a day 12 hours apart) and Trametinib (1 tablet a day at night). I have been on this since December 11th 2018 and without sounding silly it's been a dramatic transformation in wellbeing not saying it's a miracle but my life is so much better for this. I am now back to light gym work although my rugby playing days are over I can coach and take an active part again I no longer just sit at home I get out and walk and the more I do the better I feel. I went into work earlier this year 2019 to clear my desk of personal belongings and found it easy to walk up those stairs I walked briskly into my old office and as I passed by people it was bloody hell mate you look good what are you on? See a lot of people saw me at my worst and they thought dead man walking but I am determined with the help of those around me and especially my family to kick this into touch or at least put it on hold for a long time so I can ensure my family is secure I’m not ready to pass on yet by any means there is a lot of stuff I want to do and places to go. My boss who is a good friend still tells me he couldn’t believe the transformation in such a short time and long may it continue. I duly attend every appointment for CT Scans after all they are the bench mark by way of finding out how effective the treatment is and how well your immune system is fighting the cancer. Follow ups with the consultant and get the next batch of medication always on one day after bloods and occasionally a heart scan just to check how you’re doing. All these contribute to my health and it seems we have come a long way in 40 years when diagnosis was a death sentence. R.I.P. Mum Reflecting on what my mother went through and remembering how as an 18 year old I was left looking after my 2 sisters and my brother whilst my Dad was working away during the week has been tough and although hindsight is a wonderful thing I wish I could have done more for her.