Since my diagnosis, I have found myself explaining to people what melanoma is and what the treatments are like many times. It can be quite draining trying to get across that it’s a dangerous, insidious disease and not something that can always be cut out. So, to walk into a room full of people who have experience and knowledge about melanoma felt incredible. It was liberating to not have to explain myself, to know that there are many people out there who understand and share my anxieties and who have experience of similar side effects and how to manage and live with them. Most of all, it's been reassuring and comforting to know that I am not alone.
It was my first Melanoma Focus Patient Conference and since last year’s conference, I have been determined to go this year. I’ve heard so many positive stories from other people who have attended, I knew that this would be a good experience for me. The Melanoma Patient Conference was founded in 2016 by Imogen Cheese, who after her own diagnosis of melanoma, set up this important event. I know so many people are very grateful that Imogen established this because it really does have an impact.
My mum Jane came along to the conference with me. I didn’t really want to go alone, although I’m sure if I had I would have been absolutely fine as everyone was so friendly and welcoming. I wanted my mum to see for herself that I’m part of a strong community who look out for one another and give each other support. As we left the conference, my mum said to me how reassuring she had found the event and how she finds it very comforting to know I'm not alone and that as a family supporting me, neither are they.
The event was held at Voco St John’s Hotel and conference centre in Solihull and it’s a great venue and location. Nothing was too much trouble for the staff. The facilities are fantastic and the food (because I do love my food) was very good! The Melanoma Focus team along with Imogen, put together a well organised and thoughtful conference which included so many interesting topics including how to manage treatment side effects, research and trials and the microbiome.
For my mum and I, the most powerful and humbling part of the experience has been meeting other people living with melanoma and hearing their stories. Willie Munro shared his story with us, and it was a highlight of the event. He conveyed how a diagnosis can bring you to the brink of despair and fear but that there is so much hope to hold onto and he managed to do all of this with a wonderful sense of humour. Lucy Davis conversation with Imogen Cheese also gave me plenty of hope. Lucy shared her story about her experiences of living with stage 4 melanoma and it resonated with me so much. At one point Lucy said that she doesn’t really have a bucket list, but instead values time with her family. This is exactly how I feel. As I always say, I appreciate the things that other people might consider small or insignificant – such as going out with my family and friends for a latte and a piece of cake!
There were plenty of opportunities to talk with other people and my mum and I found that has helped us so much. We have come away feeling truly humbled by the stories we have heard. I know we will keep these stories with us for a very long time. To also meet in person people who I know through the online support group I am a member of, was amazing. I follow their stories and I worry when they are having a tough time, but I also celebrate when they get good news because we are all in this together, no matter what stage we are at.
The various talks throughout the day have also given me lots of hope and optimism. Although it now appears – fingers crossed and all that – that nivolumab might be doing the trick for now - I know this is far from certain and so hearing about new research, treatments and trials that are happening, or may do in the future, has been reassuring. The talk given by Professor Sarah Danson gave a really good overview of what trails are currently running and also gave an insight into how supportive oncologists are in navigating this. It is also clear how much work Melanoma Focus put into making sure patients and professionals have up-to-date information on trials via their TrialFinder on the website (click here for details.) It was also really informative to listen to talks about immunotherapy by Nurse Clinician Jackie Hodgetts and Nurse Consultant Jo Bird.
I always say that I am so grateful for the medical teams who work so hard treating me, but listening to the talks it also gave me an important reminder that there are many people within the UK, and also internationally, who are dedicated and committed to finding new ways to treat melanoma. I am humbled by the fact that they don’t give up, that they keep pioneering new ideas. One idea that I found particularly interesting was the talk by Professor Julian Marchesi about the microbiome and cancer. I have been interested in this topic for quite a while – imagining that I am a zookeeper trying to help ‘my pets’ (the bacteria in my gut microbiome) and trying to find ways of helping them flourish! Who knows, maybe one day I might end up having a faecal transplant - although the idea of the capsule sounds a bit more appealing!
So, a big thank you to the team who organised the event and to everyone who we met and who generously shared their experiences with us - we are rooting for you and we hope that you are doing ok. Are we going next year? Of course we are, we're already looking forward to it! And if you haven’t been before, all I can say to you is a quote I have adapted from Bill Bryson, “Why it’s a perfect conference. If you have never been… go there ... Take my car. It’s wonderful.”
For details of the event go to the Melanoma Focus website here
You can also see videos of previous conferences here (this year's will be updated soon)
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