With my, de minimus, treatment period of six months almost up and my functional problems escalating, I called my consultant to ask for help and was in the daycare unit at the hospital, a few days later, for the usual.
Having been called in immediately, we were woefully unready for the trek to the hospital each day which precipitated what I am only able to describe as a ‘clusterf**k’ of practical crises involving car, door keys, D’s work, D’s family and bonfire night parties (others, not ours).
Nightmare week. From beginning to end.
But, as ever, we made it through … with the screaming hissy fit – mine – as we coasted the A40 in rush hour traffic on our petrol fumes with zero fuel in the tank, now but a bad memory. Ditto, the afternoon we had to abandon our car and roll through pouring rain, in the dark, across crap terrain to make the time deadline for my treatment by two minutes. Despite some serious nurse ‘tude, the treatment got done and we made it home safely.
Worryingly, my consultant says that my weird eye problems mean my illness has broken through into my cerebral cortex for the first time … kinda disconcerting 🤔 but there’s no other easy option than to see if the steroids continue to be effective. If not, the back-stop alternative remains lots more of the immuno-suppressive cancer drugs which I have always rejected on quality of life issues but, hey, I’ve been here before and nothing’s set in stone.
I know there’s no point panicking. This development is no fundamental change in circumstance. My – chronic illness – life will always be about how best to maintain function at minimum damage and maximum life quality. So, I’ll chill, hope for the best – though I might argue that boat has sailed – and see how it goes. And, if that sounds frightfully zen of me, remember, I have been doing this for nearly two decades. The passage of time doesn’t make it easier but familiarity with the ups and downs does calm the mind.
As always, I am struggling with the immediate non-pleasant after effects of hi-dose IV steroids but improving by the day. Within the next week or so, I shall be up and about and continuing to reap the benefits of my treatment for some months to come.
Hopefully, my new symptoms will disappear and this bad week’s memories will be filed, along with so many others, in the dusty, poorly lit, rarely recalled, segment of my mind, otherwise known as the ‘life is shit, just deal with it’ category of chronic illness experiences.
Well, I’m sure I will be writing about that in due course …