Life of a Chemo Patient

It’s Sunday afternoon and I feel like I have been set back in time for 2 or 3 years staring at my computer screen with a serious headache.

Chemo brain is back. It happened quite suddenly last Friday during my presence at a congress where I was invited to give a presentation. That presentation turned into a babbling disaster. I had printed what I wanted to say, as I always do. I could not focus on the text and started to tell what I intended. And that went completely wrong. For which I sincerely apologize to the organizers and the audience. Continue reading ‘OMG, My C-Brain Returned’

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Tags: chemo brain

It’s 2 years since I had my own personal explosion, my open leg. The scars are hurting ever more. My feet are such that I can hardly stand or walk. Nevertheless I try to make the best of it. Even went to Siberia for my work, although it took me more then 1.5 weeks to recover from the 4.5 day trip. My social life has gone almost completely down the drain. One of my best friends told me I only call him when I need him, mostly to accompany me to my oncology visits. Apparently he doesn’t see, know, realize how much I appreciate his presence during those meetings, he perceives it as being needed as a driver. I am not much of a social person anymore. When you are in constant pain, fighting fatigue because of it every day, when you hardly can leave the house, it is very difficult to focus on problems others might have. Not because mine are worse, but because my pain distracts me from what the other has to tell me. The only thing that still gets me going is my work, my real fulfilling passion. Continue reading ‘Inspiration’

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A couple of weeks ago my oncologist told me that I was upsetting all possible statistics. My yearly scan did not show any lymphoma activity and my blood was plain good. However, he had no answer to all the remaining problems that I described in extenso in my previous posts.

So I will continue the battle against the continuing pain, my bowel problems, my diminishing walking abilities and the thankfully slowly disappearing attacks of chemo brain.

My next appointment in November will mark the five years after finishing treatment.

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The last couple of weeks I more strongly than before developed the feeling of near cramps, especially in my legs. It is a continuous feeling that at any moment your legs can get into a cramp, but they don’t. I can assure you, it’s no fun.

So I decided to ask my GP (PCP) if a muscle relaxant could help there. He offered  me a choice, either Valium (which would influence my head) or Sifrol, which is used against Parkinson’s Disease and Restless Legs. So I decided to try the last. I started last Friday, with a 0.088mg tablet each evening. Despite the fact that I didn’t like what I felt I followed instructions and augmented the dose to 2 times 0.088mg last night. That was enough. Continue reading ‘Suffering with Sifrol’

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I am in the south of Spain, attending a conference on invitation. The organization as gone beyond all means to make this stay as agreeable as possible. There is always someone to drive me to my hotel or the venue whenever I need to go there. I really don’t know how to thank them for it.

But during these days I realized that I have almost entirely forgotten about my feelings and experiences during my previous trip, last October, to Estonia. The impact was such, that my chemobrain has almost completely blocked that part of my memory. And I must to my great joy admit, that this time I have far less problems with my head. Knowing that a year after finishing my chemo I could not watch an English movie without Dutch subtitles, I now am able again to express myself in Spanish. Continue reading ‘Traveling’

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A week ago, this appeared in the New York Times: Chemo Brain May Last 5 Years or More. I quote:

“Chemo brain,” the foggy thinking and forgetfulness that cancer patients often complain about after treatment, may last for five years or more for a sizable percentage of patients, new research shows.
The findings, based on a study of 92 cancer patients at Fred Hutchinson Cancer Research Center in Seattle, suggest that the cognitive losses that seem to follow many cancer treatments are far more pronounced and longer-lasting than commonly believed. Continue reading ‘Chemo brain. Recognition?’

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Tags: chemo brain

I’m well into the fifth year post-diagnose. If everything goes the way I hope, in less than half a year I will even be officially post-cancer.

However great that news is, it has its downside. During the last couple of months I have learned to accept that I do need a wheelchair when a walk will take me longer than 10 minutes. Recently I found out that I might even have to narrow that down. Continue reading ‘Blessings in Disguise’

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I did not write for a long time for a number of reasons. Frustration, anger and the feeling of being a record put on repeat. For the actual situation does not really change. I still can hardly walk; chemobrain stays out of the loop more often, but any kind of physical “engagement”, even walking twice through the apartment is enough to set it off. And it still pops up spontaneously from time to time, leaving me unable to focus or concentrate sometimes for days on a row. And there are the ongoing bouts of fatigue. So far for the repeating record. Continue reading ’5th Year’

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Every medic during the last 2 decades told me I would never make it. I am 55 today. F*** them all )))))))))))))))))))))))))

I got my record and I’m still wondering what to do with it as much is wrong and much is missing.

But I am feeling quite well, as long as I don’t move. As soon as I walk, my neuropathy increases and strongly influences my head and my concentration.

All together, not bad, after 4,5 years.

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