I had been talking to Ben Heyworth about the Macmillan social media/cancer bid I was putting forward, and he told me about a patient-led project that he’d been working on – #100Voices:
Whilst we’re talking about recovery, must tell you about #100voices , a project about reflecting on and sharing experiences of cancer, led by the brilliant @ThisMorningCall @TheChristieNHS pic.twitter.com/SqHGV1fOHq
— @NHS / Helen (@NHS) February 9, 2018
Ben Heyworth talks about the patient reference group here:
So today I was able to participate in the final event (the final 8 people!), held at the Whitworth Art Gallery (designed to bring out the artistic side of us, rather than the clinical setting of a hospital). The event was facilitated by Ben, along with Tim Jeeves (artist, writer), and lasted a couple of hours.
The event was set up very clearly as being one in which this was really about us doing this individually, in confidence, and at any point we could choose whether ‘the one word’ we were going to pick would be used (at all), and whether it would be used with our names. It was also made clear that it is known that in thinking through our cancer experience, it makes us vulnerable, so someone would be on hand if we needed to pop out for a walk around the gallery. The consent forms were read, but the signing of this was left until the end of the session, so we knew what we were agreeing to, having seen the finished product.
Tim started by talking about his own experience of cancer, and how that has informed the kind of work that he undertakes, the kind of art that he produces, and how he helps people to articulate their stories through creative means.
We were asked to introduce ourselves simply by name, where we’d travelled from, and by what mode of transport, before being asked to fill a whole sheet of A4 with the outline of our bodies (with or without clothes: many jokes about the amount of time we’ve spent whipping our clothes off in hospital rooms, and if you’ve had prostate cancer, how you really can’t be shy about this – I went for with – but this is still not an image I want to share). Then we added in the scars on our body, first those from cancer, and then those from any other incidents in our lifetimes (however small, quantity over quality was here), before writing what happened alongside some of the non-cancer scars.
It was then onto 3-4 minutes to tell a story about one of those non-cancer scars – this I don’t mind sharing:
It was 1994. The housemate below me had fallen asleep listening to thrash metal at top volume whilst I was trying to concentrate on writing an essay and unable to focus. Eventually, I got up, went downstairs and kicked hard on the door, several times. Obviously, I couldn’t be heard, and all that happened was that I caused medical trauma to my toe.
From that, we then picked one word to share (without context) with the group – from which most of us, then, in our heads, created our own stories about what might have been other people’s stories – both individually, and what story the group words could tell.
Next, it was writing down how we were likely to describe ourselves on a demographics form – race, gender, class, religious, disability, sexuality and age – and thinking how if you saw all those words, it wouldn’t really capture the essence of who we are, so then it was onto another 3-4 minutes to write down a range a of words that might help people conjure up an image of you (yes, academic, life-explorer, pockets and cheese all made their way onto mine).
Another 3-4 minutes was then given to turn one of those words into a story, again, I think I’m happy to share this:
I’ve always described myself as a life-explorer. Cancer is not something I wanted to explore, but on diagnosis this was the first conversation I had with a friend – how was I going to tackle cancer in the same way as previous challenges/opportunities, and find a way to get through it with the least amount of pain/stress, looking for opportunities to connect with other people in this new community of need. Very unsettling time, but making social media and cancer a research experience gives it an extra value.
It was then time to pick ONE word from that to write upon a coloured acetate sheet, which will be added to a wall in the Christie – where the light will shine through all these words. We were encouraged that there was no wrong word, and even if the word was negative, that can help, as, as cancer patients, we tend to be given a barrage of positivity, and if you’re having a down/hopeless day sometimes it’s helpful to know that others have had a difficult time with it too! After a bit of discussion – and eenie meenie minie mo (all the words in bold were possibilities), we we asked to draw out our slide on a piece of paper, go over it with a permanent marker, and then transfer that onto the coloured tile. This was mine:
As I posted on Instagram, I ‘settled for unsettling as that’s how I feel a lot of the time – unsettled and lacking control.’ This is even more true post-hospital treatment, as I try and find my ‘new normal’ and keep crashing into expectations – mostly from myself, but also other people – about what I’m capable of at the moment – and as I wait for more scan results, and the worry that the ‘cancer merry-go-round’ could all start up again!
Having signed off our consent sheets, it was time to go home. I took the opportunity to head towards the Christie, and go and sit in Maggies, as thinking about the body, its scars, and the results I’m waiting for, and random new things happening that cause concern, brings up all kinds of things for me (yes, it’s also unsettling!). It’s such a lovely safe/welcoming space (can’t wait for the fire to go on):
Alongside a couple of chats with the lovely staff, it gave me a chance to catch up on a few work communications before heading out into the dark:
Here, I bumped into a friend from my Moving Forward group, before collecting a friend who is working on a programme about the Christie for Audible, and wanted to interview me about my experience as a patient there.
It was great to see the YBCN video that I’d contributed to on Facebook (celebrating the end of Breast Cancer Awareness Month):
