On Friday I attended the first ever Melanoma Patient Conference for the UK. As it was Andy’s 50th on the Thursday I elected to get up very early and get a 7am train to Bristol so that I could attend. The conference itself was amazing – interesting to hear the talks, brilliant to meet up with so many other patients and very lovely to catch up with a lot of friends who I know through the marsden, or the facebook group or the MPNE conferences. There is a real ease about being among other patients – there’s a kind of shorthand that goes on and it’s great to just be with people who really do understand the ups and downs of ‘living with melanoma’.
In terms of the information conveyed by the speakers I’m not sure that I learnt anything new but that has more to do with where I’m at with the disease and how much I’ve already immersed myself in learning whatever I think I need to know. However it was reassuring to know that at the current time I’m probably doing the right thing. The path I’ve chosen to tread with regard to treatment is, to the best of the current available knowledge, is probably the right one.
My doctor was one of those giving a talk at the conference and he was part of the section in which case studies were presented and us, the audience, through the use of keypads, were able to vote for what path we would recommend at any given time during the patient’s treatment. This was a very surreal experience as I was the first case study. I’m obviously very aware of my history but it’s still very odd seeing it up on a large screen in black and white with an oncologist talking about essentially how bad my cancer was when I first met him. Thankfully, the audience seemed happy to back up the course of treatment that I’ve ended up doing so that was suitably reassuring.
NICE had given approval for ‘my’ drug combination on Friday so the conference was abuzz with positivity about that but it also meant that I ended up doing a very brief interview for the local BBC there about my feelings on ipi/nivo being approved. In the past I’d have run away from such a situation but although it’s not exactly my happy place I feel far less daunted than I used to about these things. Finally, in the evening I had been asked, along with 5 other patients, to talk about my experience so far. Again, this is the kind of thing I would have avoided in the past but actually, despite shaking like a leaf throughout giving the talk I didn’t actually mind doing it and it felt good to tell my story and talk about what I had learned over the last 5 years.
So all in all the conference was an amazing and positive experience. It was very lovely to be among so many friends and it’s a world that I’ve become very comfortable in. Probably because I’m now very tired – it was a long day on friday 5am start and then didn’t get to bed until 1am I’m now feeling that awful swooping feeling of real nerves and anxiety about my next scan. I’m very scared that the tumours will have grown dramatically 0r w0rse still there’ll be new ones. I have had some pain in my upper back for the last few weeks which is different from the back pain I had in 2013 but it’s very present and I’m not sure if it’s just sore muscles or something more sinister. I hate the paranoia that goes hand in hand with melanoma but I can see that it’s probably an inevitable evil. I had promised myself a month off worrying this month. There are too many lovely things with all the celebrations for Andy’s 50th and our imminent trip to New York that I didn’t want to be ruined by worry and mostly that’s worked. I’ve loved the celebrations so far and feel so happy to be celebrating what was seemed like another impossible milestone but it seems you can have fun and worry at the same time.
As the days go on the worry is ramping up. Unlike 10 days ago I’m expecting the news to be bad. My guess is the tumours will have grown and that I’ll be put on Nivolumab. I’m just very fearful that it won’t work and I’ll have to pursue a different treatment option. Ah well, time to put the worry aside again and get one packing for NY instead.