… three years ago, I was first ill. It was a virus, or so I thought… After an initial diagnosis of chronic kidney disease, which was enough of a shock, followed by a month of complete weakness, an inability to eat or do much at all and weekly blood tests, I was diagnosed with myeloma. The rest of the story pans out in the pages of this blog.
This year though, on the third anniversary of that first milestone in my journey through Myelomaville, I have celebrated being alive. I’m three years on, in remission, and while there are Graft versus Host Disease [GvHD] issues playing out, which require me to go into clinic on Friday, I’m also enjoying the side-effects of being on a high dose of Prednisolone (steroids), which I’m taking to treat the GvHD. The dose may well be reduced on Friday, so I’m making the most of this rather trippy experience.
Christmas Day this year has been relaxed and enjoyable… No presents, no stress of a plan to be followed, just a lazy morning in bed after almost five hours sleep (that’s good going for me on steroids); breakfast in bed of honey & sunflower bread with goats cheese (along with tablets, of course); sherry and a mince pie, before a delightful, if short and breathless walk in the sun, in the nature reserve behind my house.
And then it was cava rosado o’clock, followed by decanting home-made damson vodka… and tasting, of course! It is one of the best I’ve ever made. Then on to prepare and cook a roast chicken dinner with my friend, which with a chestnut stuffing and covered in rashers of bacon, was succulent, savoury, moist and almost sweet – totally scrummy!
You may notice an enthusiastic nod to food, drink and taste in the above paragraph – that’s all down to the steroids. While I’m on them, I am not only compelled to eat anything that stands still long enough, but also to really enjoy doing so. It’s very seductive. But how to describe such oral pleasure?
As an answer to my writing needs, I came across a word of the day: parageusia, meaning an abnormal or hallucinatory sense of taste. I think it’s usually used to mean an unpleasant, metallic taste, but I’m reclaiming it. So for now, I am parageusic and loving it.
Further, I have a proposition regarding Santa Claus… He’s a red-faced, rotund, fat-bellied person, with a crazed gleam in his eyes, who is jolly with love, gifts and merriment. What do you reckon? He’s only on bloody steroids, of course! HO HO HO!
Meanwhile, as a counter to the steroid-induced euphoria, I am facing the same thoughts as my good friend, Wendy, who writes in her blog: “According to the most recent UK stats for survival from Cancer Research UK, I am one of the 72.3% of women with myeloma that have survived more than a year. Will I be one of the 37.1% who survive five years (the five-year relative survival rates for myeloma are among the lowest of the 21 most common cancers in England) or one of the 14.9% that survive 10 years?” These are my questions too.
So, alongside the wild thrills of steroidal sensory-stimulatation, these thoughts are also my companions today.
But this is how I live these days… With joy, with tears and sadness, with fatigue and lack of memory/concentration, with awe and wonder, with fear and anxiety, with love. And with deep appreciation for the opportunities this journey gives me (yes, I am that cliché) and the support of everyone who has been and still is there for me. Whatever happens, thank you all. x