Sanity and Hope Restored
This has been a tough week, perhaps the toughest since the
initial weeks following the discovery of the tumour. We have struggled
emotionally. Thankfully our wonderful oncologist and his splendid nurse
practitioner were able to restore our morale earlier this week. We cannot be
sure, but there is a good chance that the immediate slope from here can be an
upward one.
Three weeks of radiation therapy finished this week, while
the chemotherapy should also be doing important things inside my body, even if
I don’t notice anything. The side effects from both treatments have been milder
than before, with mimimal nausea and only some loss of appetite to handle.
After a couple of weeks my hair started coming out, neither unexpected nor unwelcome.
It was all going quite smoothly.
Then last Thursday a new symptom appeared and quickly become
quite serious. It started with numbness in my left hand but soon spread to all
of my left side. It felt like I had transitioned from a fully functional human
being into a dependent invalid within a few short days. There was no quality
feeling on my left side, so my movement was unsteady and prone to falls, though
I managed to avoid any, somehow. The worst part was that the simplest of tasks
involving some input from my left side became very hard. I could not dress
myself, could not trust myself with an object such as a sharp knife, was
tottering around the apartment and needed help at the toilet.
I expect it is hard to imagine just how humiliating, shaming
and especially frustrating this become. I was not comfortable but could not
safely move. My wife was wonderful helping, but her specific skills did not
really cover the situation and I took some of my own frustrations out on her.
On Saturday evening I managed to cantor mass, somehow,
despite needing help on stairs and having to secure myself whenever standing.
Then Sunday mass with my professional group was even tough, a possible fall
lurking behind every maneuver. Later that day I received the kindest firing
letter ever, and it was a relief; I had no wish to embarrass myself and others
through that experience again.
Through the weekend the condition continued to worsen. We
adapted well together and avoided disasters, but then our minds took over. Was
this permanent? Would it get even worse? If so, could I be left safely alone?
Will be forced to rethink all of our plans? Was this the beginning of the end?
My Monday radiation was in the morning for a welcome change,
and afterwards they wisely held me back to see a nurse. That started a process
which led to taking steroids, and noticed a slight improvement.
Nonetheless we attended our regular oncology consultation on
Tuesday morning in a state of high anxiety, both consumed by negative scenarios
flooding our heads.
We were making the oldest mistake in the book, though of
course it is very hard to avoid under such emotional pressure. We had been told
clearly to expect a wide range of temporary, and a few permanent, side-effects
from radiation, yet by Tuesday we had almost ruled that out as an explanation
for my left sided weakness.
Fortunately, the nurse practitioner started to put us right,
and the neuro-oncologist finished the job. It seems that a side effect of one
sided weakness is quite common during
radiation, and, even better, a short regime of moderate steroids would probably
sort out the problem. That was the moment we started to be able to escape the
doom loop and to restore sanity and hope. And, sure enough, while there have been
more bumps in the road, we can smile again and hug again and feel optimistic
again.
I suppose the big question is why we have to make the
mistake of entering the irrational doom loop? Can we aoid that next time?
Perhaps marginally, but I doubt much more than that? Why not, since it so
obvious? Because we are human beings.
Another universal, sods law, had more to say as the week
progressed. First we had to pay a large bill for the car. Aaaaaaaat least our car
mechanic is a saint. The, on Wednesday, I did my thing, as I do most days, of
knocking over a cup of hot tea. This time I succeeded in a direct hit on my lap
top keyboard and pad area. It is currently sitting in rice and we hope it might
resurrect. If not we know exactly where to go next. It is lucky that our mood
was lifting, otherwise that incident could have thrown us back onto the floor.
Last night we had a lovely meal out with close friends and
that restored our sprits further. My appetite is now being bombarded by two
opposing forces, and the steroids are starting to win, so I could enjoy my
French meal extravagantly. Hope is never far away, after all. And kindness and
thankfulness unlock it.
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