Things have spiralled so quickly. There are a lot of wonderful, kind doctors and nurses in my world talking with each other at the moment and trying to make things happen quickly for me but they keep forgetting to tell me what their plans are and this week is turning into an uncontrollable trigger-fest.
Thursday late afternoon I was given news I had to have a colonoscopy/endoscopy on Monday morning. This is being done so that they can find out where the primary tumour/s are and the lead up involves days of strict food restrictions and foul tasting awful textured bowel prep laxative drink the day before that will make you sporadically and violently shit water all night.
Now I think we’ve mentioned a couple of million times how we feel about sedation – let alone sedation with people fiddling with the lower half of our body. I honestly don’t care how kind and professional the medical team are, I don’t think it’s possible for us to get through this without emotional pain, I’m already having nightmares about being just awake enough to feel what’s happening which triggers some hard PTSD stuff and I wake up sweating, terrified and wanting to vomit.
To add to matters, I got completely blindsided by a phone call yesterday just as I sat down at a cafe to have a catch up with my sister in law. I knew that the lady from the cancer centre was going to call at some point, she told me she’d ring about the date of our PET scan & date of our oncology consult.
So I answered the call and she gives me the dates, no worries and then she tells me she needs to book a theatre date next week to have the port a cath inserted and did I have private health insurance?
Port-a-What-the-Fuck? NOBODY (other than Dr google) has discussed chemo with me – or any of us (to my knowledge) let alone a Port Cath, and NEXT WEEK?! We haven’t even had a conversation with an oncologist yet yet apparently they’d all been discussing us.
I tried to ask what on earth she was talking about but instead I not so gracefully burst into tears and had to flee the cafe and hide in the car to sob/ask why we were having chemo first when they were talking about a dangerous surgery that would need us to be as healthy as possible. And a PORT?! Why?? Our Dad didn’t have a port. A port means ANOTHER anaesthetic, like SERIOUSLY?!
They haven’t even found the primary tumour yet.
The bowel prep regime is also extremely triggering from an eating disorder standpoint and the next 7 days looks like this:
- Heavily restricted diet yesterday with laxatives
- Heavily restricted diet today til midday with laxatives
- Clear liquids only from midday today with laxatives
- Clear liquids only tomorrow, have some more laxatives!
- 6pm tomorrow take the mega laxative drink
- 4am Monday, wake up and have another mega laxative drink.
- 8:30am Try and drive an hour and a half to the hospital without shitting ourself in the car.
- 10am have the procedure or attempt suicide, unclear which it will be at this stage.
- That afternoon go home and try to be ok re the morning events and not be anxious even though they’re also going to call about the date for the Port/Cath thing. Maybe actually get to eat dinner of anxiety will allow it.
- Tuesday PET scan prep, must take it easy (that bits ok) and eat a different light & very restricted diet. (Sigh, easier not to eat at all)
- Wednesday, fasting and PET scan AM, take parents to appointment PM
- Thursday or Friday, MORE fasting and the Port Cath placement.
Then comes 3 months of chemo, a month to “recover” then the Peritonectomy if we’re strong enough.
So, when do I get to say No? When can I just hang up my boots and yell that it’s too fucking hard and I’m not “strong” and I don’t want to try to be “strong” and this is literally going to happen over and over again until I die. Ports need cleaning and sometimes replacing, chemo will keep happening, PET scans will keep happening, bowel preps and anaesthetics and surgeries and endless appointments are just going to keep happening, and hurting until one day they’ll concede defeat and agree to just make us “comfortable” with drugs that will make our head spin and our eyes unable to even focus on the children we are clinging to a pitiful existence for.
Then we’ll be dead. And people will say we were “strong” and we “fought hard” because that’s just what people say to dignify death from cancer, even though we are lovers not fighters and the reality was as ugly and unglamorous as it gets.
** Yes, that flower is a dandelion. A not so well loved weed, yet still rather pretty. Also, abundant in our garden lol.