Adrian Markwell

I was diagnosed with melanoma in May 2009. It all started from a mole on my right calf that seemed innocuous. My wife suggested that I get it checked and 4 weeks later I was told it was malignant melanoma. To be honest, at that time, I knew nothing about the disease. I had the mole removed – it was 1.2mm deep and classed as Stage 1 – and then I had 3 monthly checks (for 5 years) with the surgeon for signs of recurrence. Apart from those checks… I pretty much forgot about it and carried on life as normal. In 2015 just after the 5 years had expired, I noticed a small lump under the skin on the edge of the original scar. I have Aviva Private Healthcare and called them – they have a ‘cancer pledge’ and told me to make an appointment direct with the surgeon – so I didn’t even have to go back to the GP. He removed this lump, and again it turned out to be positive. This was known as a ‘secondary recurrence’. Being rather ignorant of the facts, I ‘assumed’ secondary was less important than primary…but no… secondary means that it is now ‘in your system’ and can pretty much go anywhere, and I was now Stage 2.

I restarted the 3 monthly checks but alternated between the surgeon and an oncologist, and each time I saw the oncologist I would now have CT and MRI scans to check for further spread. Again, life continued as normal and I enjoyed running, golf and going to the gym. I remember the day in Oct 2017 when I was driving to see the oncologist… it was a nice sunny day, and I had the second half of the afternoon off to go to the appointment at Bishop’s Wood Hospital (the private arm of Mount Vernon hospital in Rickmansworth). Life was good and I walked into the consulting room to meet Dr Nathan again. It’s not like the TV – he doesn’t sit there talking niceties and try to let you guess… he always gives the scan news before you sit down. “Good news, scans are clear again and show no spread to distant organs”. Great 😊. Then I got onto the couch for the examination and he found a small pea-sized lump about 15cm away from the original 2 sites to the outside of my right knee at the top of the calf. Back to the surgeon and he removed that lump and stitched me up again. 2 weeks later I was back at the gym and running at the weekends – oblivious to what was really going on.

Then in May 2018… you guessed it… I found another lump. I know it’s getting a bit repetitive, but this time, the oncologist started talking about how aggressive my disease was, and that we should start on drug treatments as well as the surgery. So I had the lump removed and a rather odd shaped scar. It was now that I started my Photo Diary and also a Twitter Account using a hashtag #melanomadiary as I wanted to record my journey and use it to educate others into what melanoma really is (…it is not “just” skin cancer). I discovered at this stage that melanoma doesn’t respond to chemotherapy and that when I was first diagnosed the ‘only’ treatment was surgery, but recent developments have led to new immunotherapy treatments designed to boost the patient’s immune system into fighting the cancer so I started on a drug called Nivolumab (Nivo). Chemotherapy is a poison that kills your immune system and has the stereotypical outward signs (hair loss, weight loss, sickness) but the immunotherapy drugs boost your system and can actually make you ‘look better’ – but they can also boost it too much and then your system starts attacking internal organs such as the liver, gut and skin (causing hepatitis, colitis and skin rashes and blisters).

I was due to have Nivo every 2 weeks for 2 years – luckily all covered by Aviva as it cost £4500 per infusion. But a few weeks later we realized there was yet another recurrence and when I saw the surgeon on Tuesday morning… he literally asked me to hang around and have it removed that afternoon as he was on holiday the following week and didn’t want it staying there! He left the wound ‘open’ rather than doing a graft or stitching me up because we knew there would be further surgery when we had the histology results.

We continued Nivolumab because my oncologist thought the recurrence was ‘too early’ for the drug to have started working but by August I was certain it was back on the leg, and this time I also felt lumps in my groin. The lymphatic system moves fluid around the body into lymph nodes at various places and these swell when infected. Cancer had now reach my lymph nodes and I had a further operation in September 2018 to remove the lump on my leg, cover it with a skin graft and remove my lymph nodes from the groin and fit a ‘drain’ to try and replace the function of the lymph system. This is now Stage 3, and we stopped Nivolumab as we were effectively wasting money as it clearly wasn’t working.

When I had recovered from the surgery we started a second type of immunotherapy called Ipilimumab (Ipi). This was more toxic than Nivo and you are only allowed 4 doses, 3 weeks apart. I had the first dose but then 5 days later I started noticing headaches – and by 10 days this had developed into aseptic meningitis so I had 5 days in hospital on steroids and we stopped the Ipi treatment. There were more lumps growing around the wound and at this stage the surgeon that I had been seeing for 9 years said there was nothing else he could do for me, and the oncologist said I had exhausted his treatments.

I was then referred to another oncologist at Guy’s hospital in London where I started a treatment called ‘T-Vec’. This involved injecting direct into the tumours to kill them off. Initially this seemed to work. But due to the limit of 4ml of fluid we had to share it across the tumours and it became a game of ‘whack-a-mole’ when you would hit one and a different one would get bigger. We continued this for 7 cycles but the tumours continued to grow and merge into one large mass. I had also noticed that new lumps were now appearing n my groin and pelvis – this now made me Stage 4. There are only 4 stages.

In April 2019 I had an operation to remove the bulk of the tumour (550g) from my leg to make life a bit easier getting around but again, the wound (18cm * 15cm) was left ‘open’ because there was still active disease in the wound bed so a graft wouldn’t take anyhow. This wound is slowly healing and I have had various treatments to try and assist this (maggots to clean the wound and a novel type of graft that the surgeon hadn’t done before) but there are still lumps in my groin and pelvis that we need to sort. Surgery isn’t an option and the standard drugs haven’t worked so I need to get the wound healed so I can try and be included in experimental trials… these are the only options available now.

Since May 2018 I have been engaging actively with Melanoma UK to receive moral support myself, and also provide it to others with the disease where I can. I look to educate people about melanoma through talking to people, and also sharing my experiences through my Twitter account ( @ajm968) where I post pictures of my journey to reinforce to others that melanoma isn’t ‘just a mole that can be cut out’… it is way more serious than this.

Melanoma UK provide support to patients and are also securing funds to provide ‘mole mapping’ machines to hospitals to aid early diagnosis so please support this activity as all money raised will get collected and donated to Melanoma UK.

I have recently been doing some drawing and did a ‘practice’ piece…and someone from a support group I am involved with has donated £100 to Melanoma UK to receive the original – this amazed me completely and as a result of this others have asked for ‘commissions’ – never thought myself as an artist!

Please contact me directly if you'd like a drawing done!

Here is my Album...
https://photos.app.goo.gl/MY4brt1Jn4zUowtj7

Twitter: @ajm968
Email: [email protected]

Adrian Markwell