I’m just back from Brussels & this year’s MPNE (Melanoma Patient Network Europe) annual conference. Well…I say I’m back…what I mean is physically I’m home. I’m somewhat ridiculously emotional & I am more than a little bit exhausted!
The conference had a fantastic attendance this year – over 130 patients from 21 European countries. So it was truly a mix of seeing much loved & admired “old dinosaur” faces as we non-newbies were called & also making new friends & colleagues. It was the 5th conference for MPNE & I first went to the 2014 event…which was less than a year after being diagnosed when I felt very new, inexperienced & completely out of my depth.
This time I was there to help run a workshop, present my conference & join forces with the core team encouraging new members to join our enthusiastic band of advocates in our wider quest to improve survival outcomes for patients across the EU.
At some point over the last couple of years I feel like I sort of stopped “being a patient”. It’s an odd position – especially when I speak as a patient so much of the time. I think it must be some kind of self defence mechanism – or just an attempt to disengage when trying to run & manage the conference and all that it involves.
I am well…so other than anxiety, paranoia & all the mental and emotional aspects of being a cancer patient, I have managed to thankfully avoid the vulnerability and invasiveness of being what I deem to be an actual patient. This position of detachment throws me for six on the occasions when I have to go back to Oxford hospitals for surgery & it sends me into a spin just before & after any check-up….but in the spaces in between…I am just a conference organiser…a mum…a wife…an employee…and not a patient.
I spoke at a UK Skin Cancer conference on Thursday just before heading off to Brussels and as part of my introduction I shared a slide about me…with a picture of my scar & an image of myself & the little people that had been taken just a week or so after being diagnosed in June 2013.
It was incredible not only that I can still remember every minute detail of those first few days…but also how it truly highlighted how far I have come since then.
This gap in time has brought with it knowledge, experience and an awareness of the system….but from an unusual perspective. When I sat at the MPNE event I realised that if the worst were to happen tomorrow, I doubt if I would truly be ready. I am blessed to have the most amazing connections – experts that I know I could consult & turn to for instantaneous support and advice.
Yet sitting around me were stage 4 patients for whom constant, current knowledge of every aspect of trials is not just an asset – but an invaluable resource for survival.
I feel like at some point over the last 2 years because my world has morphed into a juggling act and whirlwind – I have become complacent as a patient. Would I be able to challenge & question – or would I rely upon those aforementioned professionals to guide my way.
It’s not wrong to trust implicitly…yet I believe patients need to take ownership…and with that comes a seat at the table – both mentally as well as physically. Whilst my mental attention has been turned to running a conference I have missed properly absorbing crucial updates, new advances, exciting developments, hurdles to know how to navigate if & when the time comes.
The weekend at MPNE met this criteria perfectly. Team exercises on reading scientific papers; talks on the latest staging changes that change my staging from “2c” to “pT4bNxMo” & what that actually means; a session on the ESMO Magnitude of Clinical Benefit scale & how it is calculated; a panel discussion on the future of Melanoma….the list goes on. It was knowledge – it was current – and it forced me to think from a patients perspective again.
There was a wonderful session on Coping with Melanoma when we wrote down, discussed and acknowledged all the various coping mechanisms we have taken on. Things we do & have done – whether good or bad. Things we have sheltered from our family & friends – or in some cases how the burden is greater or lesser for us or them at different times.
Have you ever seen that nodding dog car commercial – the one where the dog goes “oh yes” and nods it’s head constantly…or the more recent “Me too” movement sweeping across the world generating solidarity amongst women.
It was a bit like that in that room with all us patients nodding our heads & saying “I do that too”!
There we were…some holding back tears, others laughing, scoffing at the ridiculous or hysterical things we have done at various points to “cope”…that shared recognition that Melanoma might be skin cancer…but it isn’t “just” Skin cancer…its this complete shift in perspectives. It’s a connection to mortality. It’s a complete re-programming of our life goals that we are observers too rather than drivers of.
I return home to my normal life….if you can call it normal at the moment!!!…and I feel so unbelievably lucky. I might not currently have running water because the pipes in the caravan have frozen…my entire bathroom is smaller than the shower cubicle from the hotel I was in just 24 hours ago. But this weekend was like chocolate to the soul. I am invigorated (even though it’s really bloody cold in here)…the fleeting sadness at the airport having left behind me in Brussels the smiles of people who “get me”…completely replaced with happiness as I crunched through the snow and into the hugs, kisses & love waiting for me in the Tin Can called home.