I’m Grumpy. And today I’d like to talk about one of the things that makes me grumpy.
This is a departure from my usual commentary or topical posts. It’s personal, and will be the first post in a new category: living with cancer. And a Stoma. And the anxiety and fear and PTSD that goes with it all.
So: Back in November 2022, I underwent the HIPEC CRS MOAS. To quickly untangle that alphabet soup:
- HIPEC = Hyperthermic Intraperitoneal Chemotherapy, a cancer treatment that involves delivering heated chemotherapy drugs directly into the abdomen after surgical removal of visible tumors. Basically they open up your abdominal cavity and fill it with anti-cancer drugs to attack anything the surgery leaves behind.
- CRS = Cytoreductive Surgery, removing all visible cancerous tissue.
- MOAS = Mother Of All Surgeries. It’s a big ‘un. About as major as surgeries can be. Several hours (typically 7-12) under the knife through a massive midline (sternum to groin) incision. They removed my belly-button too! I’m thinking of having a big metal zipper tattoo done over the top of my scar.
I woke from this in not a lot of discomfort initially (I guess some lingering effect of the general anesthetic plus the still-installed epidural), cognisant enough to know where I was and why, but still very groggy. I also had a tube down my nose, a cannula in my left arm, and another huge one high up on my chest, next to my neck. And FIVE drainage tubes poking out the left side of my abdomen.
…and an ugly, horrifying stoma bag stuck to my tummy like an Alien face-hugger with poor aim. I didn’t sign up for this and I’m not OK with it.
The next couple of weeks are (fortunately) a blur of anxiety, pain and suicide-level depression. I say “fortunately” because the parts I remember were… unpleasant, let’s say. While I would never intentionally take my own life, there are times when I was close. I recall thinking a few times that if I went to sleep… I’d be OK with not waking up. I want to be very clear about this: I did not wish for death. I didn’t think for a moment that the world would be better off without me, or that I’d be better off dead. The prevailing feeling was: “I can’t do this anymore“, and I was simply seeking an escape from the indescribable pain.
Eventually the pain started subsiding, at least for periods of time. And one by on the various tubes came out. With this came a bit more mobility, and that meant I needed to start to learn to deal with a stoma – a permanent one with no chance of reversal.
There are tons of resources out there to help people with newly-installed stomas figure things out. But almost all of them (on YouTube, at least) are of young, attractive, perky, sexy, positive, got-it-all-together people who see this as a Social Media opportunity to show off how awesome and resilient they are. It’s all easy, it’s all simple, and we’re all happy with life. Right.
I’m not one of those people. I’m pissed off that this has happened to me, and still adjusting to life that seems to revolve around this bag of poop hanging off my stomach. After two and a half years, I’m getting better at some aspects of this. Catastrophic bag-failures, aka Poonami, Bagsplosion, Stomageddon, etc. (add your favourite!) no longer happen daily (my record was four in one day) or regularly at all. Since this is my new biggest nightmare (replacing the previous one of not getting to a loo on time), that’s not nothing.
And that’s why I’m creating this content. I can’t be the only person fed up with perky positivity from 20-something models. Where are the real people?
There is so much we could talk about, that I’d be happy to explore with you. Where would you like to start?
- Bags & Wafers
- Skin damage
- Clothing choices
- Travel/Holidays
- “The Go Bag”
- Dealing with catastrophies when away from home
- Sleeping
Drop me a comment so I know what to write about next?
