On Christmas Day… in the morning…

… 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.

20131226-034330.jpgChristmas 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.

20131226-034338.jpgAnd 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

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9 Responses to On Christmas Day… in the morning…

  1. SopranoOut says:

    You’re Miss Marple! Damson vodka. Well, she had damson gin, but still.

    I think Santa was on cocaine, not steroids. I remember reading this somewhere, for realz…

    Mostly – so glad you’re here, and I wish you a successful Friday clinic visit and some real answers and helpful treatment to come.


    • Jet Black says:

      Thanks Amy. I’ve never tried coke, so can’t compare. But enjoying the steroid ride for sure. And love the Miss Marple connection. I can do that. Always wanted to be a private investigator


  2. Fibromyalgia has an ‘amplification’ effect and sometimes I feel what you describe so well, that saturation of flavour, mmm! thanks for sharing some of the positives of being called into focus by serious illness, I very much hope to be reading your 10th anniversary post as you continue to savour whatever comes your way.


  3. Helen Wolfson says:

    It is hard to realise it is now 3 years – keep up the good work

    I went to Gaye’s over Christmas (which I probably already told you) and we had also had a really laid back time – just the five of us. I even spent one day virtually in bed and do not think I got dressed at all just met up with them for meals and a little TV – fab. Gaye told me to do it and I obeyed – it was lovely

    Hope your trip to mid Wales goes well and you do not get stressed by any ‘weather’ Thanks for your telephone call the other day it was much appreciated

    Have a good time and keep warm


    xxxx Auntie Helen


  4. A poignant, beautiful tribute to living. I don’t feel qualified to say much more. As for Santa: gosh, can’t believe I missed it all this time. Steroids, of course!

    Big hug,


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