Melanoma Patient Conference

On Friday I attended the first ever Melanoma Patient Conference for the UK. As it was Andy’s 50th on the Thursday I elected to get up very early and get a 7am train to Bristol so that I could attend. The conference itself was amazing – interesting to hear the talks, brilliant to meet up with so many other patients and very lovely to catch up with a lot of friends who I know through the marsden, or the facebook group or the MPNE conferences. There is a real ease about being among other patients – there’s a kind of shorthand that goes on and it’s great to just be with people who really do understand the ups and downs of ‘living with melanoma’.

IMG_6634

In terms of the information conveyed by the speakers I’m not sure that I learnt anything new but that has more to do with where I’m at with the disease and how much I’ve already immersed myself in learning whatever I think I need to know. However it was reassuring to know that at the current time I’m probably doing the right thing. The path I’ve chosen to tread with regard to treatment is, to the best of the current available knowledge, is probably the right one.

My doctor was one of those giving a talk at the conference and he was part of the section in which case studies were presented and us, the audience, through the use of keypads, were able to vote for what path we would recommend at any given time during the patient’s treatment. This was a very surreal experience as I was the first case study. I’m obviously very aware of my history but it’s still very odd seeing it up on a large screen in black and white with an oncologist talking about essentially how bad my cancer was when I first met him. Thankfully, the audience seemed happy to back up the course of treatment that I’ve ended up doing so that was suitably reassuring.

IMG_6624

NICE had given approval for ‘my’ drug combination on Friday so the conference was abuzz with positivity about that but it also meant that I ended up doing a very brief interview for the local BBC there about my feelings on ipi/nivo being approved. In the past I’d have run away from such a situation but although it’s not exactly my happy place I feel far less daunted than I used to about these things. Finally, in the evening I had been asked, along with 5 other patients, to talk about my experience so far. Again, this is the kind of thing I would have avoided in the past but actually, despite shaking like a leaf throughout giving the talk I didn’t actually mind doing it and it felt good to tell my story and talk about what I had learned over the last 5 years.

So all in all the conference was an amazing and positive experience. It was very lovely to be among so many friends and it’s a world that I’ve become very comfortable in. Probably because I’m now very tired – it was a long day on friday 5am start and then didn’t get to bed until 1am I’m now feeling that awful swooping feeling of real nerves and anxiety about my next scan. I’m very scared that the tumours will have grown dramatically 0r w0rse still there’ll be new ones. I have had some pain in my upper back for the last few weeks which is different from the back pain I had in 2013 but it’s very present and I’m not sure if it’s just sore muscles or something more sinister. I hate the paranoia that goes hand in hand with melanoma but I can see that it’s probably an inevitable evil. I had promised myself a month off worrying this month. There are too many lovely things with all the celebrations for Andy’s 50th and our imminent trip to New York that I didn’t want to be ruined by worry and mostly that’s worked. I’ve loved the celebrations so far and feel so happy to be celebrating what was seemed like another impossible milestone but it seems you can have fun and worry at the same time.

As the days go on the worry is ramping up. Unlike 10 days ago I’m expecting the news to be bad. My guess is the tumours will have grown and that I’ll be put on Nivolumab. I’m just very fearful that it won’t work and I’ll have to pursue a different treatment option. Ah well, time to put the worry aside again and get one packing for NY instead.

 

Advertisements
Melanoma Patient Conference

June

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!

June