I have been a little quiet on the blogging front recently which in my case is generally a positive thing as it means that as much as it’s possible I’ve been putting melanoma to one side and just getting on with life. This last couple of months has been pretty good – I’ve been doing a lot of baking for a local market and have enjoyed having my head full of lists of baking schedules rather than multiple melanoma anxieties.
We also had a lovely few days away in Whistable over half-term and as always thoroughly enjoyed some time just the four of us. We’ve also booked our summer holiday which is unheard of for us as for the last 7 years since my diagnosis all holidays have had to be booked last minute based on when my scans fall. This year, I decided to take back a bit of control and despite the fact that I have a scan coming up we actually booked our holiday after the stable April scan. It doesn’t mean that I assume my July scan will be fine but logically – even if it isn’t – I figured we’d still really want a holiday and probably even more so if my treatment has stopped doing it’s magic. The boys were shocked when I told them they had to wait 4 months for our holiday as they’re so used to me saying – holiday booked, pack your bags!
So all in all the last couple of months have been very positive and in lots of ways just quite normal which has been really lovely. Cancer has still continued to make itself known but mostly in quite manageable ways. Treatment continues every 3 weeks and Pembro is continuing to make me very tired. In fact, I was a little caught out by how tired I was after my last treatment – I fell asleep on the tube back and then again once I got home – and it made me realise that I have been overdoing things. It’s very easy to try and be totally normal but I think I have to accept that I’m not and if I’m going to give the treatment it’s full chance I need to make sure I’m not utterly exhausted from doing too much. So lesson learnt and I’m now taking a baking break over the summer and am hoping I can be a little livelier and more energised as a result.
Last month I took part in a blogging event at my local Maggie’s centre. The event itself was really interesting but it meant really having to face my demons as the centre is based at Barts and I have deliberately avoided the hospital since my stage IV diagnosis in 2013. It seems extraordinary that a building can cause such a strong emotional reaction and I had to work quite hard to regain perspective and remind myself that the building had done nothing to me it was the people and the experience that have left their scars. It was pointed out that really what I ought to feel is relieved and grateful that I took control of my care and moved to a hospital which at that time offered better treatments rather than dwell on the multiple what-ifs of what would have happened had I stayed there. Thankfully that’s eventually what I did end up feeling but it was painful getting there and I was shocked at how hard it felt to be back in that place.
So whilst I have done a pretty good job of putting melanoma on the back-burner it still sneaks in – I don’t think it’s possible to live with a stage IV diagnosis and forget how precarious your predicament is – but it has been nice it not taking centre stage.
I have mentioned before that one of the least predictable emotions I have experienced since my ‘terminal’ diagnosis has been embarrassment at still being alive. Whilst I know how ridiculous it sounds, the embarrassment and the need to explain and justify why I’m still ticking along, remains very strong. In the last couple of weeks I have bumped into two people who I almost felt like ought to hide from as I feared that they’d be puzzled at my still being alive! The first was Max’s keyworker from nursery who knew about my original diagnosis and would have known about my stage IV diagnosis as the nursery fund raised for me when I walked the Shine Marathon back in 2013. As it happened she didn’t see me but Max was surprised that I didn’t say hello. I had to stop myself from saying to him that I hadn’t wanted to frighten her as she probably assumed I’d died several years ago.
The second was someone who runs a local business to whom I used to supply traybakes before I closed the business having received my stage IV diagnosis. Again, he knew about my diagnosis as I obviously let all the people I supplied know why I was stopping the baking business but since then there’s not really been much contact so almost felt the need to say – I didn’t lie, it really was dreadful and I was given months to live but I got lucky but no so lucky that I’m out of the woods. This is not the right conversation to have in your local supermarket but I found myself feeling very embarrassed and rather fraudulent despite totally knowing the reality of the situation.
My reality, my luck in responding to treatment and the oddness of my life was bought sharply home by digging out an old scan that my nurse had sent me. It shows the state of my liver when I arrived at the Marsden in September 2013 and how it looked at the 3 month scan and again 3 months after that. It’s far from perfect – I still have tumours on my liver and that doesn’t take into account the excess of tumours that lurk in the lymph nodes in the same area – but my goodness they were damn large and then due to immunotherapy they weren’t. It reminded me what a very lucky unlucky person I am.
So thankfully, for now, life ticks on and I am enjoying a little respite from the all-encompassing worry. It’s good to know that with time the day-to-day anxieties do subside – normality slowly returns and most importantly, life goes on. The scans continue to loom and as the next ones gets closer it will be more frightening than the last as the strong sense that I’m pushing my luck and really testing my treatment becomes overwhelming but for now normality is winning and I’m enjoying the sunny days and the precious time with friends and family.