ESMO is a marathon not a sprint. Even for someone who isn’t having treatment for cancer it is a test of endurance.
I set off a day early leaving home behind as I boarded the train to Dublin. I had arranged our first official group meet up at ARC house beside St. James hospital that evening. I was hoping for a smooth trip but as I tried to glide my heavy suitcase beside me it became apparent something was really not right. I wondered momentarily if someone had actually put stones in it.
I cursed my suitcase and my lack of planning as I got off at St James and realised I would have to walk halfway back again to Heuston to get somewhere to eat. When I arrived later at ARC sweating like a proverbial pig on a spit I cursed some more.
I met the staff who were wonderful, funny and so welcoming, and the ladies who came for support (hopefully some men too nxt time) and I relaxed. We went over time there was so much to chat about. J even offered to drop me to my hotel, such kindness was very welcome and spared me a long trek by public transport.
I don’t think there can be anything much worse than an alarm call at 3 am, and trying to eat breakfast at 4…. By the time I reached my hotel in Madrid later that morning I was exhausted. The early start, the heat dragging my suitcase through the airport and Metro system had taken its toll. Unfortunately my room wasn’t available for another couple of hours so I sat and read my book while I waited and waited. I hit that bed hard as soon as I could and slept like a baby.
When I woke and unpacked I discovered my nemesis, there were no stones in my suitcase just a wheel as battered and bent out of shape as I felt myself.
The following day was official start of ESMO, we had morning meetings to help advocates get the most out of the conference. Patient Advocates come for different reasons, and different goals, many I wouldn’t see again throughout the conference but my friends from MPNE we stuck together our fluorescent green lanyard’s distinguishing us in the crowd of thousands of strange faces.
I had last-minute prep to do for my presentation later that day and thanks to help from Gilly I felt confident it would be ok, as we uploaded my slides in the speakers lounge. It felt very like the inner sanctum in there as I looked around the room at those working away on their laptops or having meetings. Many of the faces I saw were world-famous, at least to a cancer patient. I felt a real sense of responsibility and pride to have been asked to speak and I was relieved it was well received.
That night we had a group gathering for Melanoma advocates. Strong bonds quickly form within our group we are drawn to each other because we get it… without having to justify how we are feeling, it can be intense, but when you’re in trouble there will always be someone to turn to.
The following few days were a constant assault of information, early morning starts and late night finishes, by Sunday afternoon the marathon was starting to affect me. I was struggling with the sheer size of the conference centre. The amount of time spent walking meant my ankles decided to become cankles and as much as I tried to keep them up on chairs beside me they were done with ESMO.
I wouldn’t make it to the President’s dinner an occasion reserved for speakers by invitation only. I was disappointed but I had to listen to my body and when I realised that my legs had also been a feeding ground for some nasty mosquitoes ( or possibly bed bugs) I made the decision not to attend next day but to rest up and change my flight.
I had to go purchase a new suitcase and after a false start the next day that saw me getting off at wrong bus stop and having to sit at the side of a busy motorway on my own for almost an hour in the heat, my disorganised life was starting to take its toll. I felt suddenly alone as I sat in a restaurant at the shopping centre and thought about my family, my sisters anniversary that week, this whole shitty situation with melanoma and I cried.
No one can be strong all the time, it’s not possibly when you’re in this situation. surviving with Melanoma is about much more than the treatment your oncologist gives you, or an antidepressant to get by if you need it. It’s not about being eternally positive as if that would somehow influence the outcome.
We all need support and unfortunately for many of us it’s not adequately provided by our healthcare systems. We find ways to cope or at least try to but many are struggling, and without the support we get from our peers many would sink. I know spending time with my melanoma companions comes sometimes with a price, and that is usually facing reality.
It comes in the conference presentations.
It comes in the stories shared of mismanagement and misunderstanding from healthcare providers who should know better.
It comes in worry about accessing the next treatment.
We get to face it in the stories of relationships struggling under the burden of constant pressure that comes with cancer, spouses with patience starting to strain, feeling helpless to hold on to the person they once knew. Not understanding why their partner is not the same even though they may look like they always did.
Parents struggling to cope with the emotions of a child’s expectations.
Conversations about distant furture events.
Struggling with our own expectations; it’s too unrealistic for us to place our futures on hold, but that’s what’s happening.
Existing instead of moving forward.
Trapped in some kind of limbo land for supposed heroes and survivors.
Without any idea of what was coming and no possible way of explaining it we are the ones that are still alive.
Constantly told our worries are good complaints to have…As if that somehow nullifies their effects
Cancer changes things, and like the suitcase with the wonky wheel, we can feel like we are being dragged along, still some use, but not the same impact we once were. Making life difficult for anyone who tries to manoeuver it.
Holding onto belongings inside; things that once were important but now should be sorted. Too hard to deal with… We keep it zipped up, so it doesn’t spill out and reveal all. It would be too messy for everyone and risky, maybe no one would be there to support the clean up.
So it all just gets stuffed back inside.
We have trouble understanding and being understood, it’s easier sometimes to toss ourselves on the scrap heap push away.
We fear ending up like the broken suitcase no longer something to be relied on, it’s, use-fullness running out before expected, no longer strong and able to carry what your loved ones require of you because your feeling wonky and crushed and no one can replace the part that’s been terminally damaged.