How are you? This is a question I have learned to dread. I do my best to avoid people who might ask this, and if I can’t avoid them, I do my best to answer in a way that they won’t realise I haven’t answered their question.
Given the (minimal) information I was given by my healthcare team I had every reason to expect that I would be, and would feel, reasonably well – especially now – with my last chemo having been in July 2019. As it turns out, I am not well, and I do not feel well, and having done some research and spoken to a number of cancer patients, in fact the situation I find myself in now, is not at all uncommon. It’s just that no-one tells you about it.
Of course, many people who have not experienced cancer first hand, have very little knowledge and understanding and generally (yes, I said generally, not always) go by the assumption that chemo is finished, so you are now fine, end of story. The difficulty comes when you try to explain what is going on and they get this blank look on their face and they say “but you look so well”. Yeah, that makes all the difference, thanks, bud.
Everyone’s experience is different and there are those who are much, much worse off than I am, and there are those who, luckily for them, had a relatively easy time and are reasonably well. But this is my experience, and I know now, that I am not alone in this. And all this without going into recurrence – a topic for another day.
I have cognitive impairment – the posh term for brain fog. It is not as bad as when it was during chemo, but I still struggle mentally, some times worse than others. Way to help me feel stupid. I have tinnitus, the joy of constant ringing in my ears, with the occasional much louder, sharp alarm going off just to give me a bit of variety. Woo hoo. I have fatigue. Again, not as utterly debilitating as it was during chemo, but nonetheless, it whacks me on the back of the head and I have no choice but to stop and sleep. How to feel aged by 50 years. I have nerve damage from surgery and to politely summarise it my bowel and bladder function is not the same as it was – I’ll spare you the extra detail here. I have chronic neutropenia, and no, it doesn’t get better, and yes, it’s tiresome worrying about picking up an infection (never mind COVID-19, thanks 2020 you bastard). And I have pain. Constant, never ending pain, sometimes worse than others. There are times it is so bad I alternate between having my head down the toilet throwing up, and lying on the bathroom floor wondering how I am going to stay alive. There are times it reduces me to tears, there are times I have to stop and give up what I am doing and there are times I plough on, but still in pain. It’s amazing how much pain we learn to live with. But yes, this gets me down. I have no alternative but to carry on with life as best I can – there is an awful lot I cannot do, but really, what alternative?
So, how am I, you ask? Nah, I’ll pass on that question if you don’t mind.