I am not a huge fan of the multiple cliches that surround cancer – I don’t think of it as a journey and certainly not a battle or something I need to fight but unfortunately some of the cliches are there for a reason and it’s very hard to think about where I am right now without referring to rollercoasters! My April scan was such a joy – a far better than I could have hoped for result, the relief that the risky treatment option I had pursued was very much the right one and a massive surge of real hope for the future. I started making plans for more than the following week – I dared plan a whole 2 months ahead and even better there were no hospital appointments and a joyful break from treatment. Right now I feel like me – I’m not chemically tired, the minor side effects I had have mostly worn off and I was enjoying that lovely feeling of normal. Also, for once, I wasn’t terrified about the next scan. In my mind the June 6th scan was still in the optimum period after finishing the treatment and as the first scan had shown overall shrinkage I just assumed this one would should stability at the very least.
Unfortunately this is where the dreadful downward swooping on the rollercoaster fits in – the scan wasn’t ok. The scan report shows that three of my resident tumours have grown by 4-5mm. So they’re still not massive but they’re growing. One of these is on my liver and these have been either regressing or stable for over two years. Despite this, my doctor has described the scan results as ‘inconclusive’ and has arranged for a further scan in 4 weeks time. He, like me, was surprised by the results and is hoping that this apparent increase is ‘tumour flare’ rather than actual really proper growth. He also pointed out that as I am one of very few (I only know of one other) patients who’ve opted for this re-challenge I am the data. There are not statistics to refer to and this is all – his words ‘uncharted territory’ and so there’s no way of knowing how the treatment might work. Perhaps it’ll have another wave of effectiveness and my immune system will remember it’s supposed to be shrinking the little bastards not allowing them to grow. I was pretty shocked to hear the news – it really wasn’t what I was expecting. I was really hoping that this first burst of treatment as it had been shown to work – would keep everything in check throughout the summer. I had fantasies about having a totally normal summer, booking a family holiday – possibly even two weeks and not having to juggle hospital appointments and childcare throughout the long summer holiday so scan results day was pretty miserable.
However, and this is going to sound very ‘woe is me’, I think I’m getting better at dealing with the disappointments. I felt pretty miserable that day and woke up the next day feeling sad and flat but I arranged to do lovely things. I spent the whole of a very sunny Thursday outside – training first thing, a long walk, brunch, other half of walk and then hanging out in our local park after school whilst the boys ran around. I know it’s really the devil but it’s hard to be sad when the sun is shining and I’m blessed to have the freedom to have totally indulgent days.
Also June is full of so many lovely things that I refuse to let it be ruined by the uncertainty of my scan. Andy will be 50 next week. Such a massive milestone and one of those that I was never supposed to see – Andy’s 50th, like my 40th later this year, was firmly in that period of ‘the impossible’ when my terminal diagnosis was given. I love that I’ve been with him so long that I was there for his 30th, planned a party for his 40th and this year have planned various lovely celebrations which culminate in our trip to New York in 10 days time. This is all the good stuff – and I’d be a fool to let a bit of uncertainty ruin it. Also, I’m feeling incredibly well and I have another 4 weeks without treatment and so that’s something that’s got to be savoured and not wasted by worry.
I find it extraordinary how easily we can re-calibrate and adjust to the new normal. I have had to accept that cancer is very much a part of my life. Right now I’m having to live with the knowledge that the likelihood is that the tumours are being left basically unchecked to grow and it’s very odd to imagine that going on inside you. It’s odd to that we can know that this deadly thing is currently growing, my doctor knows exactly where it is and what it’ll do but in terms of stopping it – it’s guesswork. The doctor and I are both hoping that perhaps the June scan is a blip but if it isn’t the next scan will show growth and I will start treatment. I am not going to torture myself with contemplating too much the possibility that my body has got wise to nivolumab and knows how to deal with it. Instead I am remaining optimistic. Either things will have settled down or they won’t but hopefully the next lot of treatment will work and I’ve done it before so I can certainly do it again. Fortnightly visits to the hospital will just be part of my routine…
Oddly – one of the worst things about this latest downwards swoop is that I find the drama of the situation quite embarrassing. If everything had stayed stable for a while it would have required far less explanation and fuss. People would have asked how things were and I could have just carried on with the ‘it’s all fine, nothing to worry about for now’ responses. But now it’s more complicated and it feels oddly embarrassing and attention-seeking. I’m relieved that I hadn’t told too many people about the latest scan and so hopefully I will be able to save some of the explanations until after the July one when I should at least have some more conclusive answers even though they’re unlikely to be the ones I want. So, one of the worst problems with having cancer – embarrassment at the drama – who’d have thought!