Current state: still fighting the metastases of the rectum cancer; chemos are done, major liver surgery in about 3 weeks
Posted by jpluimers on 2020/08/23
A long follow-up of Current state: still fighting with rectum cancer, but chances for better quality of life which does not even include everything, because so much happened.
So this is the current state; browse back via Twitter for more of the history which you can find at [Archive.is] Jeroen Pluimers on Twitter: “Too much to let sink in …” and [Archive.is] Jeroen Pluimers (@jpluimers) | Twitter.
Too much to let sink in, not just about the hospital results and upcoming surgery, but also about Cindy and Danny Thorpe who just lost their house in the California forest fires, despite it being on the humid side of the Santa Cruz mountains.
If you can help anybody affected by the #CZULightningComplex, please do. Many families there are going through a rough time for the foreseeable future especially because of the combination of fires and COVID.
If you are in that area: be careful, be safe.
For me it is mixed emotions time.
The chemo did make the cancer operable. Some tumors have shrunken, a few small ones are invisible, probably because of the chemo-induced hepatic steatosis, and no new tumor were found.
The prolapse has grown big: extended it is at least 10cm of bowel pushing itself outside of the abdomen causing many stoma leaks (5 full ones in 2 weeks time and 2 almost ones yesterday).
The good news is that it means there is hardly any intestinal adhesion.
The bad news: it takes 4-8 hours a day (of which 1-2 hours during the night) pushing the bowel back into the stoma so the output opening becomes unblocked and the poo can get out.
Though a temporary situation, this eats a lot of energy.
It means I need to find a way to keep my body in shape to prepare for surgery which is in 3-4 weeks (likely mid September).
The surgery will be tough as it will focus on 3 things:
- Removing areas of of the liver where the tumors are and were (which is about 30-50% of the liver).
- Likely remove the gallbladder, to minimise the chance of bile leakage (which is devastating when it gets into the abdomen)
(Good news: no chance to get gallstones)
- repair the small intestine and remove the stoma.
It is going to be bloody surgery (because of the liver part) taking some 4 hours or more, likely ending up in the IC because the post-surgery risks.
This scares the hell out of me.
In addition recovery will take a long time, and even longer for liver tissue growing back (it will never reach 100%, but should be much more than 50% in a few years time).
I also need to re-learn how to poop, which likely means back to diaper age for quite a while.
So all of this means I feel very confused. Glad on the one side because I will loose the cancer and the stoma, but mixed about the risks and recovery.
More later.
–jeroen
Via [Wayback] Thread by @jpluimers on Thread Reader App: Too much to let sink in, not just about the hospital results and upcoming surgery, but also about Cindy and @danny_thorpe who just lost their house in the California forest fires…
The Wiert Corner - irregular stream of stuff 
Mike Verhagen said
I’m glad you keep us updated, and I wish you all the luck in the world that your upcoming procedures are a success and put you on the road to long-term recovery. I also appreciate your other posts and find reason to save some of the links so I have a convenient way to find by them searching on my computer.
Mike