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Jeroen W. Pluimers on .NET, C#, Delphi, databases, and personal interests

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Archive for the ‘Cancer’ Category

Having cancer is not a fight or a battle, it is about having luck or misfortune

Posted by jpluimers on 2021/12/10

No, I am not giving up. But I am having the regular fear of the upcoming checks: did the metastases return, or do I have the luck to outlive some 30% of my peer group.

The last metastases surgery has been slightly more than a year ago. A year from now, that percentage hopefully will be 50% and slowly increase over time until about 90% in some 9 years from now.

At year’s end, I will know for sure.

Below are some links on, mostly Dutch, articles about the mental side of having cancer, or having survived it for now.

Food for thought, somehow fitting for this time of the year.

Especially helpful are the articles by Ivan Wolffers, doctor, emeritus professor, writer (medical literature, fiction – the latter aimed at children and adults – and columns), some of them I found fitting:

There is also his personal blog, of which the full list of 2021 articles is at [Wayback/Archive] 2021 – Ivan Wolffers.

This is about my post title: [Wayback/Archive] “Waarom doen we alsof kanker een strijd is met winnaars en verliezers?” – NPO3.nl, which in depth explains both that cancer isn’t a battle with winners and losers, and that if people keep communicating it as a fight, that it has an adverse effect on the psychology of those patients, for instance some of them even opting out for treatment at all or undergoing treatment for too long making the final stage unbearable making it impossible to bring final closure in a reasonable manner. More examples in the article, of which the Google translated version is actually pretty good:

[Wayback/Archive] “Why do we pretend that cancer is a battle of winners and losers?” – NPO3.nl.

I got it via [Archive] Jacquel💉en on Twitter: “…” / Twitter, which I retweeted as

[Archive] Jeroen Wiert Pluimers on Twitter: “Dit. Zo belangrijk. Je hebt mazzel, of pech. En bij elke controls is er stress en de vraag: hoeveel mazzel heb ik deze keer?” / Twitter

This. So important. You either are lucky, or have misfortune. And with every check there is the stress and question: how lucky am I this time?

I quote-tweeted it, resulting in this nice thread (Twitter Translate works quite well on it):

The luck I had was in part due to the Covid-19 pandemic. Because of it age based cancer screening (mainly breast and colon cancer) had been scaled down, which – for hospitals that only do cancer – made it very easy to plan all the procedures.

The misfortunes I had were manyfold. Later I will blog about it in more detail, but in short it had to do with getting on the wait-and-see list, developing metastases that were found at the first check, chemotherapy causing way too much neuropathy and other effects, combined surgery on metastases removal and ileostomy repair causing a colon leak, emergency surgery, abscess and inflammation development after the surgeries and prolapses of both the ileostomies I had. Plus a very long recuperation of all procedures: it is still going on.

Memory

For me the combination of chemotherapy with radiation therapy, four major surgeries and lots of family issues going on within a year severely affected my memory. It steadily is coming back, especially tech stuff is doing very much OK now. Day to day things will likely never be at the height they were before, but that’s OK: there are good tools for that (in the past I could largely do without an agenda, now I finally got adjusted to using one).

LAR syndrome

My LAR syndrome effects are tough and take a lot of time. Going to the toilet I often do not know what will come and for how long. This is due to both surgery in the pelvis minor area will always do nerve damage, and almost all of my rectum being gone.

It means that on average I spend about 2 hours per day on the toilet, of which one hour during the night causing me to have a gap of about 90 minutes between the blocks of sleep. On bad days, it means spending 4-5 hours on the toilet.

Oh, and I wear diapers as about once every two weeks even rushing to the toilet does not help and without them it would make a bigger mess.

Fear

There is always the (sometimes latent) fear of the metastases returning.  Every pain and every odd feeling still make me think “is this cancer again?”. It reminds me of the first 5+ years after my wife had cancer. Hopefully it will fade and I will make those 5+ years.

When writing this, I’ll be having checkups in 2 weeks time. Slightly more than a year after the surgery that removed the metastases, I have about a 50% chance of them returning within a year from now and 90% of them returning in 9 years from now.

Then hopefully treatment procedures have improved, but for now it would mean the same chemotherapy, but heavier and longer. Which would also mean learning to cope with permanent neuropathy.

Positive

I do have enough quality of life, and my wife has survived her cancer for 21 years now. I hope to be at the good side of statistics and still be here at least a few more years in OK health. Health won’t return to the levels it was, but my mind gets better over time, so I hope to be able to work again at least part-time and be able to setup enough support so my mentally retarded brother can cope without relying on me.

That is enough to keep me going for the foreseeable future.

It’s a bit like Steve talks about in the video below.

References

I would have liked to follow up on Current state: still fighting the metastases of the rectum cancer; chemos are done, major liver surgery in about 3 weeks, but then events caught up with me, so I made the choice to have the blog run just auto-posting stuff from the (then almost) 2 year queue.

This is part of my series on cancer related posts, of which the rectum cancer posts are a subset..

–jeroen

Read the rest of this entry »

Posted in About, Cancer, LifeHacker, Personal, Power User, Rectum cancer | Leave a Comment »

Diagnose de Wild gemist? Start met kijken op NPO Start

Posted by jpluimers on 2021/11/12

Het verhaal van Ruud lijkt veel op dat van mij. De reden van de spoedoperatie was anders, en hij is inmiddels alweer – op een andere manier dan vroeger – aan het werk . Al duurt het iets langer, dat laatste gaat mij ook lukken.

Zelf werk ik ook aan een verhaal met de werktitel “You got one partial life left: let’s talk about poo and pee”, misschien zelfs wel in de vorm van een speech voor op conferenties en workshops. Want hoe eerder je erbij bent, hoe hoger de kans op beter worden.

Ruud’s verhaal is er al, en daar ben ik blij om.

Kijken dus: [Wayback/Archive] Diagnose de Wild gemist? Start met kijken op NPO Start

Begin dit jaar krijgt Ruud de Wild te horen dat hij darmkanker heeft. ‘Als ik hier goed uitkom, dan ben ik verplicht om dit verhaal te vertellen’. Dat nam Ruud zich voor toen hij de diagnose kreeg.

Read the rest of this entry »

Posted in About, Cancer, Personal, Rectum cancer | Leave a Comment »

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 2 things:
  1. Removing areas of of the liver where the tumors are and were (which is about 30-50% of the liver).
  2. 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)

  3. 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…

Posted in About, Cancer, Personal, Rectum cancer | 1 Comment »

 
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