Many people will recall  reading Susannah’s last piece, ‘Things I wish I knew when I was diagnosed with melanoma’ featured in June 2017.  Susannah has very kindly taken the time to provide us with another very valuable insight into her life. Here she tells us exactly what it is like to live with melanoma.

Susannah ArcherLiving with melanoma: it’s not just skin cancer, and I’m not just a little bit tired!

I am lucky. I am very lucky. As an advanced cancer patient of nearly five years, and also eighteen years on from a stroke that left me severely sight impaired, I’m still here, doing okay and I’m living a very happy life. In the world of melanoma, especially, that makes me feel very lucky. But I’m also very tired!

In the past five years, I have seen treatment advances being made that are proving to be beneficial to more and more patients, and whilst we’re a long way off a cure, it does mean that more people are living longer with advanced melanoma. This is great news for those who respond to therapy, and it brings hope to everyone affected by this disease. But it also means there are more people learning to live with advanced cancer and the side effects of treatment. I am one of those people – I’ve had stable disease since receiving the Nivolumab and Ipilimumab immunotherapy combination in 2016. Whilst I’m far from cured – the cancer’s still there – I’m very grateful to be here writing this, and feeling pretty well whilst doing so.
But how well I feel does vary from day to day, and it affects my ability to get on and live life to the full, which is frustrating in a way that possibly only those who have faced their mortality head-on can really appreciate.

My most recent scan results showed I continue to have stable disease. It felt incredible and I wanted to get straight out and enjoy things, having been a little sidetracked and distracted by scanxiety in the preceding weeks. The need to seize the moment is always intensified by the reminder – never actually far from my mind – that other patients I have met and become friends with haven’t been so lucky. I want to get out and squeeze every drop out of life, on their behalf, and in their memory. But as is quite often the case, on results day I wasn’t really well enough to do very much at all – unless you consider going for a very short walk and taking a few photos wild times, then no, my life is fairly quiet these days. This is mainly because I experience fatigue, as a result of the immunotherapy treatment I received. Not just tiredness, but complete and utter exhaustion, and achy joints too.

The fatigue can come on very quickly, and completely unexpectedly; after two years, I still can’t predict how I’ll feel on any given day, based on what I’ve been doing the day before. Sometimes patterns emerge and I think, oh, I just need to do this or that (or not do this or that!), and then my day will be better, and I’ll have the energy to do what I really want to do. But then I’ll realise that there’s just no knowing, and I’ll be completely exhausted from just hanging out the washing. I have to constantly prioritise what matters most, and I’m getting better at it, but it’s still a juggling act every day.

If you help to support someone who has fatigue – not just because of cancer treatment, but for any other health reason – or if someone you know has a long term issue of any kind, following immunotherapy, please try to get a better understanding of what life is like for them, and try to help them to develop strategies to manage their daily routine. If, like me, they are determined to be independent and carry on, as normal as possible, then it can be tricky to know what will help, but the very best thing you can do is to try to gain more insight into how it feels, so that they are only fighting the exhaustion, and not also trying to please everyone else and show them they are doing okay.

I’m so incredibly fortunate to be here, two years on; I’m very lucky, but some days I’m also so very tired!

Susannah Archer