When I first started writing this blog I explained that I had huge reservations about doing so as wasn’t really sure what the purpose of it was. It seemed to me that there were so many cancer blogs lurking online and I didn’t have anything original or interesting to say. Of the few blogs that I follow the ones that I really engage with are generally beautifully written, or have a particularly brilliant and insightful way of viewing a situation or I know the blogger. In the third instance – knowing the blogger – they happen to be beautifully written and insightful too! So, with that in mind, I don’t really feel like I add anything to the genre. However, I find writing about my situation incredibly cathartic and so the reason I’ve continued to write is an entirely selfish one. I find it useful to give myself time to just sit and write about what I’m feeling and as an added bonus it’s a way for me to look back at my ‘melanoma adventure’. For the record – the name of the blog was a joke but it’s kind of stuck as I haven’t worked out how to change it or what to change it to!
For the first year of writing the blog I only told one person that I was doing it and where to find it and it’s taken me a really long time to point more people towards it and I’m still a little reticent. I have huge doubts about my writing ability and as I’ve said before I really don’t have anything new to say. However, people have been very generous and kind about my blog – possibly because it’s hard being mean to people with cancer but hopefully it’s because once in a while I actually have something interesting to say. I very much like the fact that no one actually has to read it. Unlike getting stuck in a conversation about my melanoma with me and finding it awkward to escape people can chose whether or not they actually want to read the damn thing! The main bit of feedback that I’ve had is that it’s useful to get an insight into what’s actually going on in my head and so, with that in mind, here’s the muddled, spaghetti-like mess I’m living with at the moment.
In my last post I wrote about my impending scan. It’s still impending…and the results are still a fortnight away so no news there. I attempted to explain why this next scan is feeling particularly daunting – it’ll be the longest I’ve gone without treatment since the stage IV diagnosis – and I hoped that by writing it down I could put the nerves aside and just get through the next couple of weeks. Unfortunately, things haven’t worked out like that – the nerves aren’t subsiding and instead I feel like I’ve hit a bit of a wall. Physically there are no obvious problems, no sinister signs that the cancer has progressed but then it often arrives unannounced so that in itself is not a huge comfort but mentally I feel wrung out. The pattern of my life, of my immediate family’s lives, for last 3 and half years has been dictated by melanoma, by appointments, treatments and scans. Initially I lived my life in 6 week blocks and now, in theory that’s moved to 12 week blocks of time. As I’ve said before, I’ve learned to take advantage of this somewhat disjointed way of living – there are more treats and far more ‘life’s too short not to…’ moments and that’s worked incredibly well and I’m sure it’ll continue to do so but right now it feels exhausting.
It feels hard to explain what it’s like to live what is essentially a very surreal life. There are many wonderful things about it but at the very heart of it is the knowledge that I’m busy harbouring a cancer that without treatment would have killed me three years ago and that whilst all appears to be well at the moment I just don’t know. It doesn’t take a lot for things to change and I’m very frightened about my luck running out. There are still other treatment options for me if and when I need them but the only one that holds a tiny hope of a miracle is the one that I’ve already had. First time round it provided months and months of amazing quality of life but it didn’t last – more treatment was needed and I moved further into the realms of the totally unknown.
For a stage IV melanoma patient I’ve been phenomenally blessed – three and a half years of mostly feeling incredibly fit and well is extraordinary. In comparison to many of the other people on my online support forum I really don’t have anything to complain about but compared to my old pre-cancer life I feel scared and I feel sad. I’d quite like to not feel a little bit embarrassed that I told everyone I had months to live and then kept on going. I’d like people to understand that I don’t have the answers – I have no idea how long my current treatment will keep working, neither do my doctors – no one does. I’d like to not have to have developed ways of staying busy and distracted so my life has more to it than just being a cancer patient. I’d like to not be terrified that every slight headache is the sign of something untoward happening in my brain. I’d like to not have a whole list of people who I light candles for who weren’t as lucky as me. I’d like to not have to be grateful that barring an unforeseen catastrophe I’ll see me eldest into secondary school this September but cannot be certain I’ll do the same for my youngest. I’d like to not have had a big old ‘woe is me’ moment – it’s a bit like outliving your terminal prognosis – it’s embarrassing – but I guess it’s my blog so perhaps it’s ok to do it here as after all no one has to read it.