The last post…?

Last Saturday was a huge day in my life history calendar. Six years ago I was diagnosed with multiple Myeloma.

Each year that passes makes that day, 4 Feb 2011, more and more significant and makes me more aware how lucky I am to have survived to this point, from an “incurable but treatable” cancer. I’ve got through all the treatments, two stem cell transplants and GvHD. And I’ve witnessed a number of fellow citizens of Myelomaville die or relapse and have to return to treatment.

What’s maybe more special about this year is that when I was first diagnosed, I was told that the average life expectancy with a myeloma diagnosis is 3-5 years. I amended and broadcast that as 5-10 years because I just couldn’t bear to give out such scary news to those who love me. So, I can now reveal that I have survived beyond the average I was given, which in the intervening years has also expanded. Myeloma is still deemed to be incurable, but there are many more people getting earlier diagnoses and due to incredibly fast-paced research and drug/transplant development for this disease, many more people are living much longer.

Having said that, I’m also aware of feeling guilty and sad that I’m not feeling totally celebratory about my survival. That’s just how it is; I don’t want to be persuaded, cheered up or ‘fixed’. Just heard.

These days, I’m mostly physically well, but with some lingering fatigue, loss of concentration and memory and varying anxiety. I do miss the energy and excitement of life on steroids. Adapting to a slower, calmer, more ‘normal’ way of being seems quite a challenge.

I’ve not felt like writing in the past year or so – well, there’s not been a lot to say. So this will probably be my last post… at least as long as I remain in remission. They say that the longer I survive, the longer I’m likely to survive… so who knows, it may be the last post ever… I’m not sure how I feel about that.

I feel irrevocably changed, on both a physical and emotional level. I am not the same person I was before. That’s ok, but I feel like I’m still working out who I am, what I want to be/do with my life.

In the meantime, I volunteer:
– as a member of Myeloma UK’s PEER Network, offering my experience and support over the phone to other myeloma patients facing an allogeneic stem cell transplant;
– with Anthony Nolan on their Register & Be a Lifesaver (R&Be) education programme, going into sixth forms and colleges to inform young people about what’s involved in donating stem cells, blood and organs, and recruiting them onto the stem cell register;
– with Nottingham Nightstop, offering occasional short-term overnight accommodation to homeless young women;
– I’ve also been out to Calais to help cook and prepare food for refugees at Dunkirk, with Refugee Community Kitchen. I hope to go again.

While my energy seems to fluctuate, with fatigue affecting me more some days than others, with no obvious rhythm, I have continued with Tai Chi, which I’ve been learning since I was first diagnosed. As for other interests, I’ve been drawn to the arts: painting, making ceramics, life drawing, printing, felt-making; and dance/movement, such as Butoh, Contact Improvisation and even getting involved in a performance art project. I am considering taking an Access/Foundation course in Fine Art at a local college, hoping to bring all these creative interests together.

I’ve learned Playback Theatre, which has become a big passion, not just for myself, but for how much it can be a cause for creating connection and community in the world, which I think we desperately need at this time. So as well as attending workshops and training, I am striving to develop a Playback Theatre company locally.

I still enjoy travelling, but less extravagantly (and less frequently) than a few years ago, without the fuel of steroids and without the propulsion of imminent death hanging over me. My last major trip was driving to Paris with a friend, to see Marianne Faithfull in concert at the post-bombing renovated Le Bataclan, then north to Calais to volunteer. My next trip may be to Budapest in April, or a driving tour with another friend in Southern Spain in May… to celebrate my five-year transplant anniversary.

Finally, I want to say thank you to all of you who’ve read my posts and commented, supported, empathised, shared your own stories and cheered on from the sidelines. This post is mostly to let you know I am alive and getting on with my life “just like any other bugger”. Thanks for being there. x

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33 Responses to The last post…?

  1. Colin Bone says:

    What a wonderful post to receive I was So pleased to learn what you have been doing and what you are going to do.

    You will remain in my thoughts forever as will all of the people our lives were touched by during Deborah’s treatment.

    Love is the only answer whatever the question.

    Sending you mine from

    Colin X

    Liked by 1 person

    • Jet Black says:

      Oh colin, thank you so much. It was a real pleasure to meet you and Deborah. I hope you’re living your life as crazily or calmly as you wish. You’ll always be welcome to get in touch. And my love to you too. x


  2. Delia Grodner says:

    You do write well, Jet. When do you start on your book ?? 😉😘

    Lots of love ,

    D xx



  3. Tina Pettifer says:

    Thanks so much for your email. I was getting concerned that you had joined the ranks of ‘friends who didn’t make it’.
    But you are obviously still here. My five years since transplant will be Oct 10th this year.
    Take good care of yourself Jet.
    Love and prayers for you.


  4. Colin Michaels says:

    Lovely to get your post ,I was wondering why we had not heard anything recently, you are such a prolific and interesting writer. Delighted to hear you’re doing well and wish you well for the long distant future. Lots of love, Colin and Barbara. >


  5. Rhiannon says:

    We are so very much in rhythm. You’ve inspired me to write more and give voice to the confusing mix of celebration and depression survivorship can evoke… So good to hear you again. Wonderful, unique, vibrant voice x

    Liked by 1 person

    • Jet Black says:

      Yes, I’m so glad to know I’m not alone in that mix of feelings. It feels quite scary to say, when everyone else is popping champagne for us. Please do write. x


  6. Lynn says:

    Thanks so much for the update. Equally glad to hear how you are moving on and through – may the TaiChi be a super source for healing, strength, and well-being. 😘

    Liked by 1 person

    • Jet Black says:

      Thanks Lynn. I mostly enjoy simply feeling graceful, which is quite novel for me. And of course, the regular movement and mindfulness help with mobility and staying grounded and in the present.


  7. Mavis Nevill says:

    Hi Jet, strange, I was only thinking the other day, that you hadn’t posted lately. I can sympathise with your thinking. I hardly ever go on the Myeloma Chat line now. I am in my seventh year Post diagnosis so feel extremely lucky. My mobility is very restricted and, like you, I do suffer from fatigue, but that said, I’m glad to be alive.
    I am less concentrating on my bucket list and more on getting as much as possible from each day.
    Go well Jet! Thank you for your sharing over the years.
    Love, Mavis xxx

    Liked by 1 person

  8. Helen says:

    Dear Jet

    I remember very well when your first heard that your own stem cell treatment had not worked. I was sitting by my computer in Cayman (and Mel was with me). I also remember how I said that there could possibly be something ‘out there’ that would work, and was well aware that I may have sounded placatory to you. But when I said it, I really felt it, and I was surprised as I usually am not so positive.

    However! – There was something ‘out there’ and it has worked for you – and that is wonderful to see.

    Lovely Blog (as usual)

    Lots of love Helen xxx


    Liked by 1 person

  9. How wonderful to catch up & read about your inspiring & quite frankly, magnificent journey. I have a feeling that you will love college 🙂 thank you for giving so much back to others. But thanks mostly to the Universe for making us such miraculous healing beings.

    Ps. You are part of a planet that thrives on ebb & flow. I think it is a good thing to authentically embrace the whole of how you feel.

    Namaste, dear one
    Chez x

    Liked by 1 person

  10. Lorraine Bryden says:

    I have really enjoyed reading your story. I was diagnosed 9 years ago and have never been able to finish any myeloma chemo treatment because they all knock my bloods back to well below safe levels and four and a half years ago two consultants told me that my kidneys were failing and that I only had weeks to live unless I had dialysis and chemo for the rest of my life. I said no to this because as an active person I could not bear the thought of sitting in the hospital for four hours three times each week for the rest of my life especially when I had so much bone pain. The Zometa gave me the kidney failure. But I am thrilled to say that I am still here able to walk by the sea each day and go out to lunch with my husband each day. It is far from the life I had pre myeloma but like you I have seen so many myeloma friends not make it. Thank you for your honesty in your writing. I have shed many tears when reading your words and also laughed at some of your many antics. Have a good life. You certainly deserve it. Lorraine


  11. Lorna says:

    Dear Jet

    I am glad to read that your life is as full as ever and that you have settled in a rhythm. I find myself with mixed emotions, glad you are contemplating this may be your last post and a little sad that even though it is good news, we may not hear from you again.

    I wish you continued health and happiness.



  12. 4windsfl says:

    So very glad to hear you are ‘getting on’ and actually, you are such a good writer, I hope we don’t have to feel the finality of your words now. And the causes you support and contribute to would probably benefit from some of us hearing about what they are about and how you are helping… just an idea… maybe quarterly? All the very best to you, Jet Black, whatever you decide. My SIL is celebrating 8 years this April and he is ‘getting on,’ too… Hugs!!


    • Jet Black says:

      Thank you very much for the compliment. I shall consider your idea, maybe in a new blog… if I do, I’ll post a link here. Best wishes to you and your son in law. x


  13. alexbicknell says:

    Hi jet
    Glad all well with you. 5th anniversary approaching for me. And my horizon has changed – I used to worry whether I’d make it to 50 (for a while I worried whether I’d make it to 40!). But increasingly, I wonder if I’ll make it to 60, and by then, who knows what the outlook will be. And I can relate to your comment about still working out who you are – I feel the same confusion.
    Keep well, and keep doing the things that make you feel good.


  14. pmdello says:

    JB; so glad to learn you are well. You have always exuded a vitality that makes the world around you a better place. Peace to you going forward.


  15. Makingtracks says:

    Haven’t read your blog in a while but when i do i always it and feel line you’re stating what I’m thinking. Well done and well written. I also just hit 6 years since diagnosis and i wonder what’s next.


  16. jkhayward1 says:

    loved your last post Jet and want to say I am thinking of you, wishing you well and optimum remission. It occurred to me that as you have slowed and stopped your posts, I have started them, along a similar theme. I’m new to blogging and new to my Myeloma diagnosis… My site should you or your readers wish to check it out is http://www.psychingoutcancer,com. Thank you too for continued inspiration and for showing me how to exit blogging with grace and positivity should the time come that I wish to do that too. J


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