Twelve years

Today is the twelve year anniversary of my diagnosis and my whole life being changed irrevocably, but not as one might imagine, badly.

I keep on living and I continue to stay in remission. Hurrah!

I outlived my mother, who died in December 2020. Not exactly a Hurrah! but the chance of her outliving her daughter was very high when I was first diagnosed. I’m glad that didn’t happen.

I continue to live with fatigue, brain fog, anxiety and back pain, all meaning that paid work is not possible. Also Hurrah! (For the ‘early retirement’ not the other stuff.)

I continue wondering about purpose and meaning and other existential questions. Hurrah?

Where my thoughts go, not only in the small dark hours of a wakeful night, but often and at any time of day. It’s a balancing act of awareness and appreciation of both life and death and their interconnectedness, not ignoring either, but finding my way along the tightrope that swings between them; making the most of life; managing responsibilities as a now orphaned daughter, sister, aunt, friend and citizen of a world; creating joy or contentment where I can and being mindful of my own privilege/luck in surviving, while acknowledging and preparing for death and the unexpectedness of old age, complete with its aches, pains, frailties and losses.

This might seem like a gloomy topic for a celebration of my survival, but I don’t see it as gloomy, just realistic, honest and surprising/fascinating.

Some years I celebrate… some years go past more quietly, but the date is always noted. Yesterday, without thinking about the significant date, I bought myself a present: an old painted wooden shutter from the window of a Thai courtesan house. If I can manage it, I think she’ll be installed in Gloria (my campervan).

I also had a manicure and pedicure with my friend, which entailed a lot of hilarity. What better way to celebrate than laughing and bright red nails?!

I don’t have any particular plans to celebrate further today, other than acknowledging the ever-stunning miracle of my twelve year survival (when 3-5 years was the average life expectancy at the time of diagnosis); and relishing the ongoing adventure of being alive. Of course, cake might be eaten.

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13 Responses to Twelve years

  1. Colin Bone says:

    Love your honesty and indeed your wooden shutter, very nice. Another spring to enjoy just around the corner. Happy travels Jet.
    With love from Colin


  2. Colin says:

    Mazel Tov
    Beautifully written , you have the talent to write, why not write a book.


  3. Delia says:

    It’s always good to read your blog, Jet. Happy to hear your update and your positivity. Enjoy Gloria!! Hope you’re putting lots of miles on her clock. Stay well. Xx Delia


  4. Craig Volk says:

    Your posts were one of the first I followed when I was diagnosed in 2014. I relatedthen as I relate now. I could have written this post, minus the fingernail polish. I have a camper as well, but I’ve downsized to motorcycle camping. Keep on.


  5. alexbicknell says:

    Twelve years. Congratulations. You’re a year ahead of me (though I try not to recall the precise day –

    We are fortunate that treatment, and prognosis, has been rapidly improving in those years. You and I have taken very different treatment journeys, but we’re both still here! Hurrah for that

    Liked by 1 person

    • Jet Black says:

      Indeed we are. And long may that continue!

      Strangely I was just talking about Wendy Duffield earlier today and sloths yesterday, which were a love of another very young friend who had a leukaemia. Must be the time of year.

      Thank you for your comment and your continuing existence! x

      Liked by 1 person

    • Jet Black says:

      And thanks for following me. You won’t get many notifications, as I don’t post much these days but I often acknowledge the anniversaries – which I’m ok with, as it marks how long I’ve survived and ‘this’ is my life. Not the one I might have had ‘if only…’ so it’s all part of the big experience of existence, to me.

      Liked by 1 person

      • alexbicknell says:

        The “if only…”s are long gone, if there ever really were any. I used to think myeloma had stolen a different future from me, but I’m no longer remotely convinced that the counterfactual other life would have been “better”. This life is the life. No complaints from me


      • Jet Black says:

        Exactly! All part of the huge experience of living. Some possibilities we choose (or think we do…?), others are thrown at us. It’s all ‘life’ and this one’s mine. I don’t think I ever had the ‘if only’ and never the anger I’ve seen others express. I like that we’re on a similar line of thinking about these things. I do miss those conversations with Wendy.

        Liked by 1 person

  6. tiggercat43 says:

    Hiya Julie.
    I’m happy you are outliving your original diagnosis.
    Sorry about your mum…I liked her😘
    Anyway now you know I have found you again…
    Thanx for your comment on WLM archive.
    I’m back in touch with Carol and Trish.
    Love from me….
    Caz( Cathy Roberts)x


    • Jet Black says:

      Hi Caz
      Good to hear from you a thanks for your kind comments. I’m also in touch with Carol. Hoping to get up to Skye at some point to see her and Lita. Hope you’re well and happy.
      Jet x
      (I don’t use Julie any more)


      • tiggercat43 says:

        Sorry about name.I get the same.Aplogies Jet…
        I have a friend that writes anything..texts, e mails, b/day cards etc…..uses Caz.
        When it comes to actual talking…she still uses Cathy.
        Old habits die hard.
        Anyway….keep on keeping on.


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