Four years on

As you’ll be aware if you’re a regular reader, there hasn’t been much ‘regular’ reading going on here for some time.

But, today is the four year anniversary of my myeloma diagnosis, so it warrants acknowledgement at the very least.

This morning, I was greeted with a post from Alex, who writes the blog, Dial M for Myeloma. In today’s entry, Live Longer Longer, he writes and shares data about how the longer we stay alive, the better are our odds for continuing to do so. He cites another blog by Gary Petersen, Myeloma Survival, in particular this post entitled The longer you live, the longer you live, which includes the following charts.

Life expectancy myeloma Death rates myeloma

From these charts, it is possible to see that having survived for four years since being diagnosed (and treated), my life expectancy has risen from two to seven years and my chance of dying is decreasing year on year, with only 7% of people at this point dying, compared to 23% in the first year.

This data alone is enough to celebrate.

Added to this is the fact that the ECP [extra-corporeal photopheresis] treatment I have been receiving for the past year, to treat/manage GvHD [Graft versus Host Disease] seems to be working. I realise I’ve not written about it yet and that I’ve made several promises to do so, so I hope you’ll continue to bear with me until I can get my head in the right space to concentrate sufficiently to write about it.

Because the ECP is working, I am now much more flexible and mobile than I was this time last year with scleroderma GvHD. My lungs have remained stable and not deteriorated and I have fewer issues from other GvHD areas such as mouth, eyes, vagina and guts. So while I am still taking Prednisolone (steroids), I’m only on 7mg per day and even better news, from the initial fortnightly ECP treatment, I went to 4-weekly some months ago and just last week we agreed to 8-weekly.

Hey, I’m almost “cured”!

But not…

No, it doesn’t work like that and even if it did, the experience I’ve been through in these last four years remains with me, the incurability of myeloma remains with me, the daily medication and regular (even if less frequent) hospital appointments remain with me, the high cost of travel insurance remains with me, the awareness of my mortality remains with me, as does the loss of people I’ve come to know in myelomaville/cancerville who are no longer alive.

In fact I attended a funeral two weeks ago of a friend, who didn’t survive two years from diagnosis. “Her name was Deborah, it never suited her.” Yes, she was that same Deborah that Pulp sang about in Disco 2000. She sure threw a good party… Wow! What a night! I’m glad I knew her and was able to offer support to her and her close friends and family.

My contacts list now has a number of people on it who have died. I keep them as a reminder of how much their journeys, their attitudes, their sharing, their support have all influenced me. Their absence affects me with both sadness and a warm touch of gladness to have known them, either in person or online, through blogging or Facebook groups.

Witnessing the death of people I’ve come to know, while sad, also motivates me to continue making the most of the time I have, whether or not I beat the odds. As Alex puts it, “The myeloma patient’s objective being, ultimately, to die of something else.” It may sound strange to say, but I’m not sure if that is my objective. The idea of dying of something else disrupts the script I have in my head and puts me into the same unknowingness that every other averagely healthy person experiences. Weirdly, I like having a sense of what I might expect, even though I don’t know when and I’d like it to be some time away. See above charts!

So, whether in knowingness or unknowingness, I am here today and all being well, hope to be back here in a few weeks time, after a trip to see family in the USA. I’ve been unable to contemplate any long haul flights for over a year, due to an increased risk of infection because of the high dose of steroids and the recirculated air on planes. I’m excited!

And who knows… Maybe I’ll get back into writing more here. There’s plenty to tell!

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17 Responses to Four years on

  1. Glad to see you back to your blog. Hope you have a good time with your family in the USA. The stats are looking good and can only get better. Keep on keeping on darling. xx


  2. Mary louise says:

    Beautifully written so glad you are better
    God bless you


  3. Jet Black says:

    Thank you Mary Louise.


  4. Mavis Nevill says:

    Hi Jet

    Good to hear from you again, and as usual a very upbeat post.

    I too am celebrating being in my fifth year post diagnosis. I am 70 soon, an age I never expected to reach when I read my first online web article on myeloma, from my hospital bed.

    It is strange, isn’t it, to be in “remission” but to share with new friends, as I had to today, that myeloma is incurable. It is a lot for us to get our heads round.

    I am so pleased you are off to America. I do hope you have a great trip. I wonder how you are getting through you 50 things?!

    Lots of love.

    Mavis x


    • Jet Black says:

      Hi Mavis

      Thanks too for your continuing support. And thanks for the nudge to update you all on my List for Living. I do update the page from time to time. But I’d like to write a post about which things I’ve done and how they were.


  5. redcarrol says:

    Hi Jet, you write a mean piece, excellent! God, I sound like a teacher…. I’m Looking at this for the first time and find it inspiring. Humble hugs and hat off to ya x


  6. Colin Michaels says:

    We’ve missed your writing ,so readable and eloquent .
    Really happy you are doing well, long may it continue.
    Enjoy your trip across the pond.
    All our love,
    Barbara and Colin


    • Jet Black says:

      Thank you Colin and Barbara. Lovely to know you’re still reading. And thanks for the compliments on my writing. I do enjoy it when I can concentrate enough to do so.


  7. Morag says:

    Congratulations Jet! xxx


  8. SingTravelAct says:

    I’m so glad you’re here. (This is Amy from Hawaii)


  9. alexbicknell says:

    Chuckle. I realise that dying of something else is not a great objective really, given that the most likely way for that to occur would be if some other disease or disaster got me. I don’t mind dying of myeloma at all. Just when I’m 80 something, please.
    I will chant “4 more years” on your behalf (though it makes me sound like a politician’s fanclub).


    • Jet Black says:

      Chuckle right back at you, Alex. Thanks for your blog and for reading mine. Yes, four more years would be great! Enough time to do stuff, and not too much to over-stretch the wallet. Actually, I’d quite like to get to 60, just because.

      Liked by 1 person

  10. Nichola says:

    My husband is suffering with sclerodermatous GVHD following SCT for AML. Would be lovely to hear your experiences, if you don’t mind, not sure if you can se my email address, but drop me a mail if you can 🙂


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