I have tried several times since my last post to write a new blog post and I’ve found that I keep starting them but when I come back to them they don’t quite capture how I’m feeling so I keep abandoning them. I was beginning to wonder if perhaps I only really blog when things are all up in the air and scary but actually I think what has been holding me back is that I don’t really know how I feel at the moment. In theory, I should be feeling amazing, I’ve just started my 5th cycle of Encorafenib and Binimetinib and my second scan on Monday has shown that the new treatment is continuing to keep my tumours under control. I am, obviously, massively relieved but I don’t feel like I can relax. I’m not sure it’s ever possible to relax when you have a stage IV cancer diagnosis but I’ve definitely had periods over the last 5+ years where I’ve mentally been in a pretty positive place – I don’t seem to be quite getting there with these new drugs.
It might simply be that the constant pill taking – 9 pills in the morning, 3 pills 12 hours later, or the list of minor but nonetheless there side effects (fatigue, slight nausea, hair thinning, sore joints) means that there’s no let-up but actually I think the problem is that from the moment I knew immunotherapy had stopped working and targeted therapy was my only option, I’ve been aware that it often doesn’t work for that long. Some people get very lucky and the drugs last for years – one of my friends has just passed the 4 year mark on targeted – so I know it can happen but I also know that the average is a year and for some people they don’t even get that long and so it feels like I’m treading water. I didn’t know how I’d react to the new regime and I didn’t know whether it would work at all and so since December I haven’t really done anything. I’ve just ticked along and for a while that was alright – it felt sensible to allow myself some time to adjust to the new situation and the fatigue does tend to limit how much I want to do but actually it’s becoming rather depressing and that’s a place I don’t want to go.
There’s no way of writing this without sounding melodramatic but really what I want to do is live my best life. I don’t want to get to the end of a day or a week or a month and feel like all I’ve done is tread water. I’ve said before that my stage IV diagnosis didn’t suddenly make me want to write an epic bucket list, it just made me realise that actually the mundane, the normal, just hanging out with my family is really rather lovely but what I realised recently is that there needs to be more treats. Life is, without doubt, too short and so just plodding on isn’t quite enough. For a long time Andy and I would book a short break or a holiday after every good scan but somehow this has fallen by the wayside – it felt strangely excessive and a bit embarrassing – but the December scan was a stark reminder of how precarious life is and now, a few months on, it’s time to start arranging some treats. So, to start, we’ve booked 5 days in Turkey during the May half-term and this is going to be speedily followed for me by a few days away in Valencia.
Unlike last year, we can’t start booking a big summer holiday as I’ll have another scan in a couple of months time and that’ll dictate the shape of our summer but I can certainly make the most of the in-between-scan-window.
May, as it is every year, is Melanoma Awareness month. Last year I wrote about my frustration that the ‘Awareness’ tended to just focus on early diagnosis and skin safety but actually the issues of access was massively important – lack of it causes stage IV patients to die. This all remains the same – despite all current melanoma drugs currently being approved there are still enormous issues as to whether everyone is getting the optimum treatment at the optimum time. In that the sequencing of drugs is a hugely researched and important subject it’s not something that is currently being translated into patient care in the real world. I have been incredibly fortunate that private insurance has allowed me to navigate, with much advice, through the best treatment pathway for me but this shouldn’t be conditional on having private healthcare.
So, May remains a complicated month. This May should have been my two year anniversary on Pembrolizumab and in theory the plan was that I’d stop treatment and instead be monitored to check for further problems and would restart immunotherapy when it was needed. Well, my bastard cancer clearly didn’t get that memo and worked it’s way round the immunotherapy at the end of last year and so it’s hard not to be feeling a little sad that I didn’t hit that milestone. I don’t seem to be very good and completing treatments. I came off my original trial because of side effects after 17 months and then had to stop Pembro at 19 months due to progression. Thankfully my current treatment is simply ongoing for as long as it works so no clearcut deadline!
May also marks the month in which I was original diagnosed with cancer. As I’ve said in previous blogs, this milestone was so massively trumped by the stage IV diagnosis 2 years later that thankfully it doesn’t cause the same kind of headfuck as September 24th. May (oddly also the 24th) ticks by and makes me a little sad that I was diagnosed with cancer nearly 8 years ago when only 34. My boys were so little – only 3 and 5 back then and whilst I didn’t know everything would go the way it did and that I’d be given a terminal diagnosis – I did fear it and so the fact that Max will be starting at secondary school in September and Oscar is very nearly as tall as me now is astonishing and rather beautiful. The fact that Andy and I have made it through so many anniversaries that we reached 25 years together is equally amazing. It shouldn’t take cancer to make people live well and in my case, it shouldn’t take a setback like the crappy December scan to remind me that every day matters but perhaps the milestones are good for that – they make you stop and take stock. In my case, it’s made me go a little holiday mad but then I know that as a family there’s nothing lovelier than the four of us being together and away from all the distractions of real life.
So, more treats, less complacency. Make every day matter even if it’s just silly things like filling your house with flowers because they make you smile, or going out for a walk because there’s nothing like a bit of fresh air and nature to clear your head or making sure you start your day with a Malborough Bun because they’re marvellous or just book some more holidays!