Having cancer is not a fight or a battle, it is about having luck or misfortune
Posted by jpluimers on 2021/12/10
It has been a while after my last post about me having cancer. 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 but with English abstract, 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:
- [Wayback/Archive] Meer over Medisch | Grootmeester der duistere pijnen about fear that with the last treatment, you run out of luck.
- [Wayback/Archive] Meer over Medisch | Bakstenen, which for me is about finding closure with the past.
- [Wayback/Archive] Meer over Medisch | Waar was mijn geheugen? about how chemotherapy can affect memory.
- [Wayback/Archive] Meer over Medisch | De sleutel van het overleven about how learning to accept each stage in life, and deciding what to do when quality of life approaches zero.
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):
- [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
- [Archive] Jacquel💉en on Twitter: “@jpluimers Inderdaad zo simpel is het gewoon. Dan hopen datje controle op afgesproken moment mag en niet zoals bij mij later….. (snap de oorzaak goed, gevoel is niet fijn)” / Twitter
- [Archive] Jeroen Wiert Pluimers on Twitter: “@jacquel_en Hier stinkende mazzel dat ik bij @hetAVL zit en er 10 minuten vandaan woon. Daar merk je ook gevolgen van het corona-virus, maar minder sterk als in veel andere ziekenhuizen. Dit jaar is het effect er voor mijn gevoel wel sterker dan vorig jaar. Op een goede uitslag voor je!” / Twitter
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
The Wiert Corner - irregular stream of stuff 
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