Life of a Chemo Patient

The result of my last PET scan and blood work caused my oncologist to “accuse” me of upsetting the statistics. And he finally said with so many words that the odds were very bad when I entered his office in August 2006. With all I have read, that would have been about 5%.

But he had no solution for all the rest. And that what I call “the rest” is large. When I write this, I’m just out of bed. Like every morning, everything hurts, especially my legs feel as if they could go into a cramp every minute. And that won’t go away for the rest of the day, it has become one of those basic things in life.

After my stay in hospital in October and absorbing of 5 different antibiotics within 3 weeks, I have to say that my system did react. My ears have gone down the drain; there are moments when I seem to loose about half of my hearing due to the very light tinnitis I used to have in my left ear becoming a serious whistle and the pressure in both ears getting up as if like being in an airplane descending near the coast. I never thought that listening to Cecilia Bartoli would one day physically hurt! And as with everything it comes and goes ad lib and without any previous warning.
Another effect has been that in the last half year I lost a big chunk of control over my bowel and bladder. Especially my bowel is a problem, as it all but blocks completely with as a consequence a lot of extra pressure on my bladder and certainly no weight problems….

My legs and arms remain more or less the same as they were the last 3,5 years. My feet balance between the feelings of severe burning, knife stabbing and actual cramps. As I already mentioned, my legs constantly are on the edge of cramping, often they do cramp or end up playing the RLS game, kicking at free will. And with legs I mean the full length. Walking is a serious problem, but sitting is no solution either anymore. Standing has become a challenge.

Of course, I should mention the leftovers of the cellulitis explosion last October. The scar tissue hurts regularly and my left foot and calve tend to swell rapidly when not constantly in a horizontal position. All this of course on top of all the rest.

My hands and arms are not much better, although I have to admit that my writing has improved compared to half a year ago. My hands tend to rheumatism, my arms regularly threaten to cramp as well.

I almost forgot, the high pitch vibration I mentioned in previous entries is still there; apparently one can get used to anything.

The remark I made during one of my former doctor visits still holds; between diaphragm and shoulders everything seems to work perfectly, outside that area it is just disaster.

But there is this saying about clouds and silver linings. It feels as if the problem of my chemo brain is slowly diminishing after having gotten quite worse following my stay in hospital. Despite the bouts of fatigue, it seems that my concentration level is getting up and the feeling of being “stoned” happens less often. Cross my fingers.

Altogether, my oncologist agreed that I should go and try abroad to see if I can find a way out of these problems. “Maybe we can learn from it”, his actual words were.

To so much wisdom I have little more to add. I’ll be back!

~ by lodewijk bos on July 1, 2010.

Posted in actuality