Last night I returned home from my 4th MPNE conference in Brussels and as always after these events I’m utterly exhausted, totally inspired and already missing all my melanoma friends. It seems extraordinary that a group of people who are brought together by something as vile as cancer can form such strong and joyful friendships.
This year’s conference was held in the same hotel as the first one that I went to back in 2015 and it was odd to think back over the previous years and realise how much has changed, how much I’ve been taught and what a rollercoaster of a journey the last few years have been.
Back in 2015 when I was on my first lot of immunotherapy – (Ipilumumab and Nivolumab on the blinded trial) I applied to go to the conference realising that as a stage IV cancer patient I needed to learn as much as I possibly could about the disease. What I didn’t expect was that I’d develop side effects from the drugs and ended up hospitalised in the days running up to the conference. I was so set on going that I was eventually able to persuade my consultant to discharge me with the promise that I was going to be surrounded by medics should anything go wrong. I arrived home from the Marsden on the Thursday evening and set off early the next morning to Brussels with a suitcase full of antibiotics, steroids and as it turned out no socks.
The conference was brilliant and my recent bout of side effects stood me in good stead for workshops about the risks that patients are willing to take. We are far less risk-averse than our doctors and carers and having just experienced grade 3 side effects first hand I was very clear where my priorities stood. I knew very few people who were attending the conference but those that I did know were lovely and welcoming plus I finally got to meet the phenomenal team behind MPNE. I also got to spend time with my much missed friend Lori. She was dreadfully ill that weekend and despite our plan to travel home together I had to leave her in Brussels as she was hospitalised with pneumonitis. Considering how ill she was – she still gave an extraordinarily powerful talk about her fight to access treatment and quite how much risk she was willing to take.
The first conference was a total eye-opener and like so many first time attendees I felt like a total fraud I was very much a patient and not a patient advocate and felt that whilst I learned a lot I gave nothing back and whilst I did join in with some discussions I was extremely shy. The following year, to my surprise, the indefatigable Bettina asked whether I’d be willing to give a talk about what the 2016 MPNE theme – knowledge is power – meant to me as a patient. To my even greater surprise I agreed to do it. How could I not – all those involved in MPNE work tirelessly to engage, inspire and ultimately empower everyone who attends so really when they ask you to do anything it is impossible to say no. Plus, the lovely Lori had died in November 2015 and remembering her passion and bravery (hate that word in relation to cancer but blimey she was brave) there was no way I wasn’t going to give it a go. In the months before she died, despite how ill she was, she’d been encouraging me to get more involved in MPNE and been gently pushing me to find my voice.
So in March 2016, I’d had got over my upset that I was off the trial, I’d had a lovely 9 month break from treatment and was several doses into my Ipi/Nivolumab re-challenge. I was beginning to realise that whilst I might not be the most proactive patient advocate my treatment story was important. There are still very few melanoma patients who’ve done this drug re-challenge and I was happy to tell my story as well as glean any information from those attending and talking as to what the likelihood of it working was! At the first conference I had been pretty knackered from the recent side effects and hospital admission at this second conference I was 3 doses into my 4 lots of ipi/nivo and was suffering from a fine combination of fatigue, facial flushing and an extremely dry mouth. None of these things make giving a talk very easy but I did it and once I’d stopped shaking with nerves I was very proud of myself for stepping so far out of my comfort zone and not totally screwing it up.
Forward another year and it was MPNE2017 and this time I was not on any treatment (having completed my re-challenge in April 2016) and was remarkably full of energy and was able to rush around doing a little Brussels sight-seeing in the tiny windows of downtime in the conference programme. Again, I’d been asked to speak and this time it was talk about how much an additional 3 months was worth. The talk was inspired by a workshop that I’d been to in London when I’d been appalled that an additional 3 months of life was considered of so little value and it really reinforced for me how essential the patient voice must be in any discussions about treatment and the value of life. It seems that even without me realising the whole patient advocacy thing was seeping into my life and making me bolder and braver about stating my views. This conference was brilliant – highly informative and beautifully put together and it was so lovely to catch up with a group of people who over the years had become my friends. I’ve talked before in other posts about how nice it is to spend time with other people who are also living with melanoma and I realise that part of the pleasure is that you don’t actually need to talk about your cancer story beyond a brief recap because these people live it too and understand all the ins and outs without any explanation.
So finally to this year’s conference and again it was a brilliant programme. For the second year running I was asked to provide bags of florenteenies for the MPNE faculty and so once again travelled to Brussels with a large suitcase of confectionary and a small rucksack of clothes! There were more small workshops than previous years and this meant it was far easier to join in with discussions and share my views. Plus, finding myself at my fourth conference, surrounded by so many lovely friends that it was impossible to talk to them all, I realised there really was nothing to be scared about. I gave a short talk about my experience of disease progression at stage IV and I helped run a workshop about patient forums both of which went smoothly and I don’t think I disgraced myself! Unlike last year when I was treatment–free and full of energy this year I’m 10 months into Pembrolizumab and finding the fatigue pretty hard work so there was no speedy sight-seeing and instead I perfected the art of the 10 minute power nap in order to make it through the long but fascinating days.
Despite only getting home last night today was a treatment day and I had to set off early to go for my 15th infusion of Pembro. I started the day feeling pretty tired and tearful and really missing my lovely melanoma friends but thankfully the day went smoothly, my MPNE friends sent my lovely messages and I even managed to squeeze in another one of those magical power naps when I was waiting for treatment so the day ended more cheerfully than it began.
Looking back over the last 4 years of conferences it’s amazing to see how much has happened, not just in terms of the vast amount of immunotherapy I’ve had but in terms of the friendships I’ve made, how much I’ve learnt along the way and how much I feel like I very much belong to the really quite delightful MPNE family who I believe like me for more than must my florenteenies!