Sitting in a pub, with five other PWCF, on a Wednesday night, is not a usual occurrence for us. That is exactly where and what Dave and I found ourselves doing recently. It was fantastic.
One of the group had just turned 40 and we gathered to tell him in person that he’s now officially old. He took it as the compliment we intended it to be. Coincidentally, it was almost exactly a year since the last time we had all been together. On that occasion we were saying goodbye to a fellow PWCF at his funeral. He was integral to our gang, one of the last old timers, a mentor of the group. That Wednesday we remembered him, missed him, and raised a glass.
We kicked back with a beverage and settled into our booth for the long haul. Conversation moved around the group like an entity, alternately involving the whole group or breaking people off into trios and duos. We touched on many topics – The Bachelor (#dirtystreetpie); picking rosemary from the front lawn of a funeral parlour (best rosemary EVER); the pros and cons of jogging with secateurs (there is a least one pro); pets performing on national TV (go Texas!); the ALS ice bucket challenge (what can non-profit organisations learn from this?); swimming with whale sharks in WA (… or not… due to my phobia of sea creatures, the fact that the wallpaper surrounding our booth was completely covered in sea creatures, my tolerance for wallpapered sea creatures)….etc.
We are friends first and foremost but our relationships ultimately run deeper than social-media-worthy topics. Within that warm circle of friendship CF is well and truly lived and normalised. If a stranger had stood beside our booth and watched us interact for five minutes they would have felt the presence of CF, they would have known we share a significant something-or-other which automatically binds us together as a clique.
On that night, our something-or-otherness was cheekily on show. Insulin pens scattered over the table were reviewed for their benefits and limitations. There was general and repeated rowdiness amongst the boys about the toilet habits of people who can’t digest their own food. Honestly, you’d think they were still in primary school, not recently and officially middle-aged. Some of the girls mulled over where is the best bikini-friendly placement for a port-a-cath*. The three K+ trial participants compared stats and improvements while the others leaned in closer and listened in avidly. When food arrived we all pulled out our Creon*. One of the guys admired the limited edition All Blacks Creon container I snagged at a conference in Auckland last year. Dave and I gifted it to him and he was in raptures. Lamentations and gnashing of teeth ensued about particular inadequacies of our clinics. The phrase “hot intern” had, and always will have, the power to halt all conversation instantly. As one we all turned and tuned into the vitally important anecdote about the who! where! when! and what! We hugged hello and goodbye, we gave high fives – we treated each other as humans, not walking and talking vehicles for germs and cross-infection. We had a drink or several and joked that our livers will be totally fine because we’re all taking urso*. Despite our frivolity the night wrapped up early due to limited spoons, dwindling energy levels, and evening treatment sessions.
It’s simply effortless being in a group of PWCF. There’s no need to explain or hide things and it’s easier to be honest and vulnerable because we have a knowledgeable and receptive crowd. Our CF baggage can grow heavy. Our friends with CF help us live with the load.
* Port-a-cath – a permanent intravenous access point inserted underneath the skin and entering a closely located large vein so it’s super easy to receive intravenous antibiotic therapy.
* Creon – enzymes we take with food to digest our food as our naturally made digestive enzymes can’t travel to where our food is because of blocked pancreatic ducts.
* Urso – short for ursodeoxycholic acid which thins the secretions our livers produce and helps prevent liver damage.
NB: I/we also receive considerable, ongoing support from family and friends without CF which is invaluable. This post showcases the peer support we receive less frequently.