May: Melanoma Awareness Month

I have been feeling very neglectful of my blog as have failed to post anything this year.  When I was I first diagnosed with melanoma in 2011, in a search for reassurance, I’d spend hours trawling the internet trying to find stories of people who had (as I did back then) stage III melanoma but who didn’t progress. Sadly I struggled to find such a thing and instead people would ‘start out like me’ then they’d progress and then they’d mysteriously stop updating their blogs….. I was not naive enough to hope that these people were doing great and living joyful fulfilling lives …. back then …that’s just not what happened with advanced melanoma. 

So when I abandon my blog for months at a time I do worry that people fear the worst! Thankfully, right now, all is well. My lack of updates is mostly down to not really having very much to say and certainly not feeling I have some amazing knowledge or wisdom to impart. 

I’d love to say that melanoma has faded into the background and I’ve filled my head with happier things but actually it’s been very much on my mind. Obviously, there’s still the monotonous and terrifying scan schedule and so every twelve weeks the terror descends and I throw every coping mechanism I have at trying to stay reasonably together. 

Alongside that I am becoming increasingly conscious that all my optimism about how amazing it is that the treatment landscape for melanoma has improved so much since my original diagnosis is beginning to falter. The fact that so many more of us are living with advanced melanoma, with some who may even be considered cured when immunotherapy treatment has so successfully reprogrammed their immune system, doesn’t take away from the fact that people still keep dying. It’s not just people who caught their cancer too late, or that the treatment never worked but people, who like me, have managed to keep their melanoma in check for years by staying on top of treatment options, protecting themselves with all the knowledge available and yet whilst it’s much better than it used to be, it’s far from good enough as too many people are still dying. 

This month is melanoma awareness month – and I’d love to think that after all these years (it’s exactly 12 years today) I’d have a raft of amazing advice to pass on to people. In some ways I do – I have lots of advice for anyone who is unfortunate enough to be diagnosed with melanoma 

1. Make sure you have a good medical team – move to a specialist centre if possible.
2. Get a second opinion especially if you have any doubts. You are placing your life in someone else’s hands – it’s OK to be picky! 
3. Stay up to do date with the science. You don’t need to be a ‘science’ person to follow what’s relevant to you. 
4. Be your own advocate or if you have a loved one who can do that better than you – let them.

By coincidence – I have ended up marking my odd anniversary of diagnosis (this one usually slips by as it was so trumped by my stage IV diagnosis) by spending the morning with the Melanoma Focus team at a parliamentary drop in session in Portcullis House. The purpose of which was to promote greater awareness of skin cancer as part of the #knowyourskincampaign and to encourage MPs to support the removal of VAT from sunscreen.

So on my journey home I was again trying to think about some amazing insightful thoughts or advice for May’s Melanoma Awareness Month.

But in fact, really, it’s the same that it has always been – do your very best to avoid getting melanoma in the first place. Whilst not all melanomas are related to sun damage – the ones that are, are avoidable and so not getting melanoma in the first place is the best possible option. Plus, it goes without saying if you have something you’re worried about, trust your instincts and get it seen immediately.

Be careful in the sun don’t try and get a tan, plaster yourself in high factor sunscreen, seek shade, cover up. 

I really didn’t think I was the sort of person to get cancer…..

Only picture I remembered to take this morning – a quick snap of a sunny Thames from Portcullis House