Unhappy again.

On July 2 I had to have surgery on my left foot, as something was growing out of the side of it. As my GP told me that it was a tumor, although for the appearance of it benign, I decided to pay a visit to my oncologist, just to get an informed diagnosis. My oncologist called a dermatologist and both came to the conclusion that it most definitely was benign. As it was at the inner outside of the foot, it was beginning to hinder my walking abilities, already not the best part of my motor capacities. So to surgery it went.

And from there on it went wrong, seriously wrong. I was told I should not stand or walk on that foot for at least two day. And I was sent off, on foot. So by the time I arrived at the reception desk 5 floors down there was a whole blood trail running through the building. I was given new bandaging and this time someone went to find a wheelchair. I was told the bandages could be taken off after 2 days. Fortunately I kept the information of the wound nurse that helped my to get through the open leg ordeal, 2,5 years ago. She came and started to take away the bandages. Her first words were “That could have been done nicer”. Nobody was really surprised when the next day the threads tore and left a quite big open wound. I will save you the panicking discussion with the surgeon who had the impression he had seen something malign on the removed tissue, so suggested to take away a larger piece of the foot and cover it with some skin transplant. It was the surgeon’s proposal, although it was decided that my oncologist would take the lead if necessary. The surgeon’s call came on Friday midday so I didn’t talk to my oncologist till Monday. He completely annulled the surgeon’s decisions.

It took weeks to find out that when left alone, the healing speed of the wound could easily be beaten by the slowest kind of snail. So the nurse suggested to use a new kind of bandage Promogran Prisma. And lo and behold, it seems to work.

However, since we started the Promogran, my neuropathy worsened. The open wound on top of my neuropathy was already hell, but that diminished considerably after a couple of days. However, after applying the new bandage, my foot started hurting much more, but above all, my chemo brain came back in full force. When I get out of bed I stumble, having to catch myself not to fall. After 5 minutes that acute problem disappears (balancing problems remain however), but then the next one appears. My eyes start to spontaneously turn direction nose bridge, as if I were squinting. Which makes concentrating a very complicated business. Combined with the physical balance problems, it leaves me, activity wise, almost paralyzed. Oh, and my tinnitus is worse than it has been for years.

So I sincerely hope that the wound heals soon. As you can see from the picture, walking is no option, the wound is over 1,5 cms large.

Oh, and if you know of any neurologist who might be knowledgeable about this kind of problems (see “Chemo brain.┬áRecognition?“), please contact me in the comment field.

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~ by lodewijk bos on August 17, 2012.

13 Responses to “Unhappy again.”

  1. Lieve Lo, wat een ordeal!
    Ik heb er geen woorden voor deze uiterst akelige situatie….
    kan ik iets voor je doen??
    Is het een optie je een poosje te verplaatsen op een bureaustoel ‘trippelend’ door je huis?? Heb je hulp bij boodschapperen??
    Vraag je hulp zo nodig?? Ik word er plaatsververvangend al een beetje desperaat van…..en bewonder je moed en stamina om toch posts te maken en te plaatsen voor ICMCC…
    I wish that the day may come very very soon when all this will be a nasty memory…
    Ik leef met je mee!!

    • Dag lieverd,
      Lief van je!!
      Met alle drempels wordt dat lastig :)
      Boodschappen worden gedaan.
      Dus verder gewoon geduld…

  2. ha lieve Lodewijk, hoe gaat ie met je? Wil iets voor je betekenen maar weet niet hoe. Beloof me in al je stoerheid hulp te vragen. Van oor tot auto, van eten tot whatever… warme groet, Caren Kunst

  3. [...] Lodewijk is “Unhappy again,” as he puts it mildly, at the end of his rope again, this time with pain and chemo fog. ┬áI [...]

  4. Might want to contact LIVESTRONG. We have info on neuropathy and might be able to give insight on any clinical trials or available treatments for neuropathy. Info online here: http://bit.ly/lsform

    • Thank you Brooke. My only problem is that I’m not a cancer patient anymore, my problems are with the post-treatment effects.
      Lodewijk

  5. Would hyperbaric oxygen therapy work on the open wound? It’s used successfully on diabetics with a similar problem. I’ve used it succesfully for bone damage due to radiation…

  6. PS – It’s also used to treat neuropathy. I’ve seen it used related to diabetic neuropathy but may also still apply in your case… – J.

  7. From @PNSchmidt on my FB page: “Did you/he ping Bas Bloem? There are many great neurologists in the Netherlands.”

  8. I suggest you call Mayo Clinic. You could even have your doctor call. they work largely through affiliates, but I think they have a second opinion service. and they are doing more telemedicine http://www.theatlantic.com/health/archive/2012/08/a-mayo-model-the-collaborative-future-of-medicine/261504/
    I saw your post on e-patient Dave. I am not a doctor.

  9. Not sure if this will help, but here are some good resources:

    http://www.cancer.org/acs/groups/cid/documents/webcontent/002908-pdf.pdf

    http://journals.lww.com/plasreconsurg/Abstract/2004/08000/Chemotherapy_Induced_Neuropathy__Treatment_by.27.aspx

    You maybe able to ask Dr. Dellon re: Dutch experts. (http://www.dellon.com/)

    Hope it helps
    HB

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