Life of a Chemo Patient

Yesterday was the first day of the rest of my life. At least, that’s how it felt. Why? The day before I had a meeting with my oncologist, coinciding almost with the 2nd anniversary of my last chemo treatment. And during that meeting I changed from cancer patient to chemo patient.

I had all kinds of weird side and after effects of my cancer treatment. One of the key elements of those effects was that I felt like being stoned for most of the day; unable to coordinate, to focus, to think or communicate properly for larger parts of the day. That has changed, somewhat. I still have these moments on a regular basis, sometimes longer sometimes shorter. But due to the fact that it has become less “constant” my perception of my physical “problems” has changed. I now am aware of them in a way that I could not be till about 6 months ago. A year ago I made a 2,5 weeks trip to the US, now I even can’t think about taking the train to Amsterdam. I walk with a stick, because my feet suffer from severe classical neuropathy. But also because all my extremities, i.e. from the waist down and my arms and hands, suffer from a continuous high pitch vibration which causes trembling, cramps, partial loss of control of my moving abilities. That same vibration causes regular problems on a mucous level, which means loss of control of my bowel movement, causing either temporary incontinence or total peristaltic paralysis for a number of days (it happens at random). It also means that I get instantaneous attacks of inner mouth irritation to the point that I can’t eat anymore and even drinking water is painful. The fun is that it comes and goes without warning and the frequency is unpredictable. Mostly these attacks are the intro to the next step, my head switching off. It’s not as bad as the days when I was stoned, but it has strong repercussions on my concentration and focusing. As I said, this might last for several hours. It is impossible to predict when or how regular this happens.
All this results in immense fatigue which is added to the fatigue that is the autonomous result of the treatment itself.

The last few months I have been struggling to deal with this. It has been an emotional rollercoaster. I have tried to find out what part of my treatment might be the cause of this, knowing that it had been partially experimental. Unfortunately, I was not able to find answers.

The most important outcome of my visit to the oncologist was that my body is still clean of any sign of cancer!!! Knowing how aggressive this specific cancer has been, this can be considered a small miracle. So do not worry, the chances are gigantic that I will be around for another 40 years to bother you all…. (grin).

During the above mentioned period I have seen 2 neurologists to try and find out what the exact problems are. All exams came out splendid. An MRI of my brain was made as well as an ECG, both were categorized as exemplary. My PET scan was good, my blood excellent.

These outcomes combined with the fact that my physical problems have not really improved over the last year caused my oncologist to conclude that I very probably belong to that very small group of people that does not react well to chemo treatment in a general way. I.e., there is a splendid result, the cancer has gone, but the body itself does not recover properly from the chemical attack.

As weird as it may sound, this remark ended a period of uncertainty. I now know for a fact, that I might have to continue the next 40 years as a partially disabled man. I now know, that the coming months will be hard, for I will have to adapt my mind to that concept and start to cope with it. I also know that in acceptance very often the basis for a certain kind of healing and recuperation is found. And although I do not know if my body will continue to (not) behave the way it does now, I do know that it will never be back to what it was before the chemo.

I am immensely grateful for the fact that I’m still alive and (sometimes for the wrong physical reasons) kicking. I will have to adapt to the fact that quality of life will be different from what I expected or had hoped for. This will affect both my social and my working life, at least in the near future, maybe even for the rest of my life. However, I will do all that is in my abilities to re-arrange my life to such extend that I will be able to live it to the fullest and to fulfill my goals, both personal and professional.