2015

As 2016 is fast approaching it’s hard not to look back and think about all that has happened in 2015. By rights, this wasn’t a year I was supposed to have had. Until very recently, Stage 4 melanoma patients had a very poor prognosis and add to this the fact that my unwanted visitors were pretty big and all over my liver and the fact that I carry the BRaf gene which makes it a more aggressive form of melanoma, I am very aware of how incredibly lucky I have been.

This last year has been filled with a huge mixture of emotions but overall it’s been an amazing year. There have been so many high points: lovely holidays with Andy and the boys to Lanzarote, Turkey and some splendid English hotels plus a sneaky trip to Bruges just Andy and I. There have been lots of coffees, lunches and teas and a fleeting spa weekend with my amazing group of friends and rather a lot of normality. I’m sure I’ve said it before but normal is very underrated. I’ve learnt to really love and appreciate the simplicity of day-to-day life.

I am still utterly overwhelmed by the kindness of all my friends and family. They have continued to love and support me as I’ve moaned and worried and fussed but as well as being there and listening they’ve made sure that my year has been filled with an array of lovely occasions.Nothing could have been a greater example of this than the extraordinary support I received when I set myself the challenge of running a 10k in June. I am not a natural runner. I find it incredibly hard and I am frustrated that either cancer or the immunotherapy seem to have sapped my speed and made me much more of a plodder than I used to be. However, the massive support I received, the kind and thoughtful messages, the amazing faith that a huge array of people had in me was both overwhelming and inspiring

During the last year I’ve also learnt a huge amount about melanoma and what it means to be a melanoma patient. Due to the amazing Melanoma Patient Network Europe group I’ve been to a fascinating conference in Brussels and an equally engaging workshop in Sweden. I’ve also taken part in a meeting at the European Medicine’s Agency to discuss the viability of a possible new treatment. All of this has opened my eyes to how naïve I had been. When I signed up to the trial back in October 2013 all I really cared about was that it was giving me access to drugs that might prolong my life. To some extent that desire remains the same and the fact that the trial has prolonged my life in a way that I hadn’t even imagined possible is something that I shall remain grateful. However, I have come to recognise how much the drug companies need us and how poor trial design can be and that whilst new innovations in the treatment of cancer should be focused totally on the patient’s best interest that is mostly not the case. Obviously, for me, I was incredibly lucky and I have ended up having access to the best possible drug for the situation that I was in. However I remain frustrated that my blinded trial remains blinded and so whilst I’m 99% sure that I was given Nivolumab I don’t actually know that for sure and that ultimately removes an important element of control for me and makes it harder to think about my next potential treatment might need to be.

The biggest change over the last year has been coming off treatment. I found this very hard as there was a huge amount of comfort in knowing that I was actively doing something to keep the cancer at bay. Looking back to the spring I realise I was really quite ill with colitis-type symptoms which lead me to being admitted to The Marsden for the inside of a week and to contend with a couple of months of steroids but at the time it felt very manageable. My main concern at the time was that I didn’t want to come off the trial drugs. It wasn’t simply about the reassurance of having regular infusions it was also the routine of fortnightly visits, it was the friendly greetings of the nurses in the Medical Day Unit, it was bumping into other patients during my visits. However, I have now adjusted and am enjoying the freedom of not being tied down to such a routine and I’m certainly less tired and run down than I was during active treatment.

Inevitably, being part of an online melanoma support group, means that there has been a huge amount of sadness over the last year. So many really quite extraordinary people who I’ve met, or messaged and had become my friends, have died and the sadness can be quite overwhelming. Like many, I’ve always objected to the notion of having cancer being about being a fighter involved in a battle and the many friends who I’ve lost reinforce my objection to the cliché. These people couldn’t have been braver, stronger, or more special but other than striving for better availability and access to treatments it’s really not a battle as in the end cancer will do what cancer does and no amount of determination will ever change that. Sitting here now it’s hard not to think that it’s all potluck in the end and for now I’m one of the lucky ones but so many lovely people haven’t been. I feel dreadfully sad for all the losses and there are a whole array of extraordinary men and women who have died who I will I continue to think about.

So, today is actually New Years Eve, (I’ve really dawdled over this post) and as fearful as I feel about what next year may have in store I couldn’t be more grateful for 2015. So many happy memories, the joy of watching my boys getting a little older, more time with Andy, my family and friends. I really shouldn’t ask for more….but I do….. I want lots more… so much still to do.

 

 

 

 

 

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2015

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