It’s been a big week, crazy week in fact and the short version is that I finally have a date for the peritonectomy surgery and it’s next week.
Tuesday next week. Sunday night we head to Sydney ready for the pre op appointment on Monday morning then Tuesday is D day.
This op is big, huge in fact. It’s a 12 hour procedure. It gives Us a 30% chance at living for more than 5years. Apparently We are fit and healthy and the imaging scans indicate We’re more likely to fall into the magic 30%. Most reoccurrences will happen in the first 12 months after the combination of surgery and chemotherapy.
They’ll take out the main tumour and areas of bowel spread then take the affected bits of peritoneal wall and any non essential organs that are affected, look suspicious or are close to suspicious areas. Then they fill the abdominal cavity with warmed chemotherapy and let it sit for around an hour before draining it and closing you up.
There’s a chance We could wake up missing a whole bunch more internal organs (hopefully not) but potentially including bladder, stomach, portion of liver, a kidney, spleen…
There’s also a chance We won’t wake up at all.
We’ll be in hospital a minimum of 21 days after the op as long as there are no complications, complications occur in 50% of cases, but they said they’re really good at managing them.
All going well We then start six months of chemo. I’ve been told it’s going to be hard because We can’t take steroids that are normally given with the chemo to help side effects. Last time We took two low dose steroid tablets I ended up front stuck and in psychosis for several months so they’re not an option for Us unfortunately.
It’s a lot. Luckily our crazy hectic life prevents me from having time to really think about it. I’m weirdly numb and not nervous, even the PTSD stuff that terrified me before is back locked in a box. I write it down, talk about it yet I can’t connect emotionally anymore even when I try.
People keep saying I’m so brave and inspiring because I’m not a blubbering mess (at that moment) and yet I feel like a psychopath because I’ve got no emotional connection to it. I can only cry at M and even then it’s random and more out of frustration. I guess dissociative tendencies die hard.
So this week I’m trying to help organise my Dads transition into aged care and help my mum start the process to sell her home. I’ve got bookkeeping to catch up on for our poor business so Hubby isn’t left too far out of his depth and I’m also attempting to organise refinancing the house so we can pay for a bunch of medical expenses now that hubby can’t work as much due to caring for Us.
I’m extremely grateful We live in Australia and won’t be out of pocket the $300,000 that this operation costs. Honestly though hearing that dollar figure makes me feel like such a hypocritical drain on the healthcare system since I’ve spent the majority of my life suicidal.
If We do survive this, I’m going to make every minute count. I will find a way to help people and pay society back a little. I’m not sure how, but I need my life to mean something, to help people, or at least help a person.
I wish I could have done more already, but maybe you need to live through shit like this in order to gain enough perspective to really help others. Phase 1 of my life has been surviving, phase 2 is going to be living, sharing and growing.
Thank you to the beautiful people who have reached out to me and given me so much support over the years. I, well We, are extremely grateful to have had the opportunity to share our soul in such a non judgemental safe space, it has been just as if not more life saving than any surgery or drug possibly could be and we have so much love for each and every one of you.