Last week was the first Sarcoma Support Group at Maggie’s in Nottingham. I’d had my three-monthly clinic an hour or so before (“X-ray’s fine. You good? Cool, see you in three months” - love a boring doctor’s appointment) so I was on my third volunteer-brewed cuppa by the time we all met in the Big Room.
The thing with sarcomas is that they’re rare. According to Sarcoma UK they make up less than 2% of all cancer diagnoses each year and within that 2% there’s over 100 different subtypes. Throughout the time I’ve been visiting Maggie’s I had only met two other people with a sarcoma and both were bone ones with experiences so unlike mine. Knowing how unusual my particular lump was I aimed all of my questions at my medical team, I know enough about googling shit that I know I wasn’t going to find any better information. I’m lucky in a way. My lump was just vibing in my lower back podge, it hadn’t spread anywhere my treatment was to be a simple zap and scoop. I had all the information I needed to hand. But as I discovered in a comfy chair over tea in Nottingham, that’s not a common experience.
Many sarcoma patients don’t ever meet anyone with the same type. There was about ten of us in the group on Wednesday and it was more a venn diagram of common experiences rather than some people have this type and did this treatment, others had that type and did that treatment. For me it was nice to meet a woman who’d had a similar sarcoma removed in her leg after also having radiotherapy. She was earlier in her healing process than me and was happy to see me wandering about easily within the year*.
Even thought it was only the first meeting it felt really nice to meet others in the same cancer niche. Being in the privileged position of no more treatment and just the occasional cheeky X-ray there’s not much support I really need. It’s just a nice bonus. But by the end of the meeting you could see connections being formed and mutual needs being recognised. Online support from places like Macmillan and Sarcoma UK can do a lot but it only goes so far and I suspect there are many like me who simply don’t find the appeal in forums**.
Places like Maggie’s offer something more than cancer support. It’s a simple human connection, nattering about crochet over a coffee or comparing notes on dressing changes and it’s a place at the heart of the hospital campus that isn’t strictly medical. It’s a cuppa at a kitchen table. And you can't ask for an extra sugar with your google search.
Shoutout to my awesome housemate Kaz and her colleagues who walked their legs off around Birmingham for 13 miles and raised nearly a grand for Maggies!
*It’s not even been one year yet. How the fuck is that possible?? **as you can tell I love simply shouting into the void
