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14 October 2015 / erikduval

Back to primary school

Since 10 days, I am back in the hospital, more or less as scheduled.

An ‘interesting’ development is that I’ve lost most fine grained perception and control in my hands and legs. That’s apparently not that exceptional. It was a bit worrisome at some point, because I had experienced this numbness for months at the very top of my toes and fingers. And then, about two weeks ago, it suddenly progressed very fast, especially upwards from my legs, to the extent that I worried I would be more or less paralysed a few days later.

Since then, the situation is pretty stable. It feels like my lower legs and upper fingers are sleeping. But it’s not getting worse. In fact, it may be slowly getting better.

I mentioned that this is an ‘interesting’ experience, because I more or less had to learn again quite a few things I’ve been able to do for 45 or 50 years, like for instance how to walk. I have lost most sensory feedback from my lower legs, and now steer my movements much more on sight. In physiotherapy, in some situations, I just fall over when I close my eyes. (Don’t worry: I only do those exercises when there’s a professional physiotherapist right next to me.) Much of my treatment for this side effect of my chemo treatment centers around compensating the old way (sensory feedback) of doing things with a new way of doing the same (focus visually on where my feet should land). I like the fact that human bodies have that flexibility.

My hand problems are also ‘interesting’: it now takes me about 7 minutes to button my shirt. And I can no longer write, or, when I do, nobody can read it – not even me. Thank God for keyboards! But no worries, I look forward to going back to primary school and learning to write my name.

Apart from this ‘interesting’ experience, I’m doing kind of fine. I just finished 6 days of intensive chemo. The idea is that my blood will deteriorate in the coming days, because a lot of red and white blood cells are destroyed as a kind of ‘collateral damage’ in this chemo war I’m fighting. When the levels of these cells are back to somewhere near normal, probably in 2-3 weeks from now, I’m allowed to go back home. About three weeks later, I’ll be back in the hospital for my final (I hope) session with the stem cell transplant.

I do hope you’re having plenty of interesting experiences too, though I also hope they involve less “let’s re-learn how to walk”!

14 Comments

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  1. annett zobel / Oct 14 2015 7:17 pm

    Keep going ! …keeping our fingers crossed…

  2. siavogel / Oct 14 2015 7:26 pm

    Seems difficult to me. And also frightening. Hoop dat het snel weer wat beter voelt dan Erik. Sterkte maar weer. Het is een lange weg.

  3. Gillian / Oct 14 2015 7:43 pm

    So glad to hear from you and to hear you are analysing the effects. Keep typing! The brain has a formidable memory and the muscles will figure that out when the drugs ease off.

  4. Stijn Kelchtermans / Oct 15 2015 9:21 pm

    Hang in there, Erik! I like your perspective that our bodies are moist computers that we can reprogram (presumably this idea also means I can get rid of all my bad habits if I would just re-wire my brain…;) ).

  5. dougclow / Oct 16 2015 7:49 am

    That sounds like the sort of ‘interesting’ experience that would come from the mythical Chinese curse ‘may you live in interesting times and come to the attention of important people’. Or, more pithily, “another f***ing learning experience”. Good to take it positively!

    Bah to peripheral neuropathy and all the other iatrogenic effects of cancer treatment.

    Hooray for keyboards. Communication is great. Thinking of you and wishing you well, as always.

    One of my current new experiences is learning to live with two new kittens, who are a source of much joy. And scratches and mess.

  6. Barbara DB / Oct 16 2015 9:40 am

    Veel sterkte met al die ‘interessante’ ervaringen… ik vermoed dat het niet elke dag zo aanvoelt, maar wens je dat je het kan volhouden om er zo mee om te gaan.
    Ik duim mee dat ook je planning stand houdt , beter dan die van veel IT-projecten😉

  7. lrenshaw11liz / Oct 17 2015 7:32 am

    So pleased to hear about your learning experiences. Keep those posts coming, and Im glad we live in an era when the keyboard rules and communication is abundant. I’ve just re learnt how to run after 45 years of a sedentary work life… skipping with a rope is next on the horizon. Us ‘old’ dogs can certainly learn new tricks……. Go Erik…. get those legs moving….I believe your can do it!…

  8. Greet Bilsen / Oct 19 2015 12:49 pm

    Sterkte

  9. dgasevic / Oct 21 2015 7:21 am

    Erik, many thanks for sharing your experiences by going through this “interesting” journey. I wish all this “interesting” happenig ends soon and you are back your old “uninteresting” self. Thinging of you and very inspired by your bravery!

  10. JoB / Oct 23 2015 9:20 am

    Relieved to hear you’re still fighting. You have earned another set of ninja badges. However difficult it is, you are inter alia helping a lot of good people who will be attached by the type of bad cells that you are dealing with.

  11. christienbok / Oct 23 2015 1:15 pm

    Heel veel sterkte Erik! Ik kijk voor je uit naar het einde van het jaar. Alle goeds, ik wens je veel rust en liefde,
    Christien

  12. joannes / Nov 3 2015 8:07 pm

    Erik, ik moet vaak aan je denken en wens je dan het beste toe. Daar word ik dan beter van maar jij niet. Geen “spooky action at a distance” (*) ? Direct uitdrukken van bewondering en steun werken wrschnlk beter.
    (*) of toch?

  13. Gert-Jan Hufken / Nov 16 2015 1:29 pm

    Hi Erik,

    Keeping my fingers crossed for a positive update that I hope to see appearing soon. Hoping this intervention has solid results.

    Keep going!

    GJ

  14. Stijn Kelchtermans / Nov 16 2015 9:51 pm

    Best wishes, Erik. Hope the re-learning is going ok and that you’re feeling better. Hang in there!

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