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My two buses

Posted on 13/11/201914/05/2023 by Jen

Hilary Mantel, on winning Bookers for her consecutive novels Wolf Hall and Bring Up the Bodies, compared it to waiting for a bus: ‘You wait 20 years for a Booker prize and then two come along at once.’

Two major events, years in the build-up, are culminating for me in the next couple of months.

Bus No.1—Ocrevus, a new-generation MS treatment. A monoclonal antibody, it slows or stops progression by destroying a population of B lymphocytes involved in the processes that cause brain damage in MS.

I tried to get a previous neurologist to prescribe its precursor, Rituxan, for me in 2015. No luck. Then I applied to get onto an Ocrevus trial last year. That went nowhere. But now there’s been more experience with it and my new neurologist is keen to see if I can benefit. I get my first infusion on Monday.

And just in time. More than once lately I’ve slumped on a seat, wondering if those last few steps really were my last. So far no, but my left foot is dragging badly, and walking, even short distances, is much more of an effort. My tremor is getting so bad that mealtimes can feel like a food fight. My head’s stuffed with cotton wool and I have trouble tracing a thought from its inception to a logical conclusion. And the muscle spasms …

Ocrevus is an immune suppressant so I’ll have to be careful. Please keep a wide berth if you have a cold. I’ll be dousing myself in hand sanitiser, but it’ll be air kisses—air hugs—all round for the duration.

And Bus No.2—my memoir, Long Road to Dry River, shortlisted for the Finch Prize last year, is nearing the final stages of production. Also a long slog. In fact I started it, unknowingly, 20 years ago in our short-lived Quaama Women’s Writers group. I hope to launch it in the New Year—depending on how the Ocrevus is treating me. See what I mean? Stay tuned.

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22 thoughts on “My two buses”

  1. Debbie says:
    24/11/2019 at 9:52 am

    Hoping for great success with both the treatment and the publication of the book. Will remember to keep a polite distance when I see you around Quaama. Will have to give the hugs to John instead I’m sure he could use some extras!

    Reply
    1. Jen says:
      24/11/2019 at 11:08 am

      He won’t mind at all! And thanks Debbie, I can use all the hope and wishes that are coming 🙂 xx

  2. Flavienne says:
    19/11/2019 at 11:59 am

    You and Jonathan have at least one thing in common: you never give up! Your determination is as it should be: inexhaustible. I’m praying 😊🙏😘

    Reply
    1. Jen says:
      19/11/2019 at 12:05 pm

      Thanks Flavienne, yes, my brother was an inspiration. My lot is easy, in comparison.

  3. Josephine R says:
    14/11/2019 at 12:09 pm

    wonderful witnessing a snippet of the birth of your publication Sahi. Love always Sephalita (aka Josephine)

    Reply
    1. Jen says:
      14/11/2019 at 12:14 pm

      Thank you Seph! xx

  4. Manshar says:
    13/11/2019 at 10:11 pm

    Oh Sahi my heart weeps. Wishing and praying to whatever deity, medical science, for some good results.

    Love and good fortune go to you.
    Mansh

    Reply
    1. Jen says:
      14/11/2019 at 10:06 am

      Yes I’ll take whatever’s available at this time Mansh. Thanks and love xx

  5. Anonymous says:
    13/11/2019 at 5:08 pm

    Oh dear, you are an inspiration Sahi. I have written them down – it’s what to do next that has me totally stumped.

    Reply
    1. Jen says:
      13/11/2019 at 5:12 pm

      Is that you again, Daisy? It would be a great collection. Let’s have a coffee and talk about it — but not just yet … maybe in the New Year? x

  6. Caroline says:
    13/11/2019 at 5:00 pm

    Hi Jen, it might say something for my own brain of course but I remain impressed with yours xxxxx may everything you do bear sweet fruit

    Reply
    1. Jen says:
      13/11/2019 at 5:05 pm

      Thanks Caroline but the words definitely don’t flow as they used to, or the ideas. The doc says I might see some clearer thinking on this treatment … I’m trying not to leave myself open to disappointment. xx

  7. Diana Trendall says:
    13/11/2019 at 4:03 pm

    Sahi that is all fantastic news! Can not believe it is twenty years since our QWW. A lot of water under the bridge, a lot of words, well done on perservering!

    Reply
    1. Jen says:
      13/11/2019 at 4:12 pm

      Daisy, I’ve been here 21 years now so it would have to be close to 20 since we started that group. And a few little gems that came out of it have found their way into the book. I remember some lovely short pieces you wrote at the time too. And I’ll never forget receiving an email from you from that time that opened with ‘A friend of ours has just been crowned King of Aotearea’. Or something like that. You, Daisy, are a story magnet and I wish you’d write them all down!

  8. Liz says:
    13/11/2019 at 2:20 pm

    Wishing you every success on each Bus, on each of these new and timely journeys. Love your use of the bus analogy, even if borrowed.

    Reply
    1. Jen says:
      13/11/2019 at 4:01 pm

      Thanks Liz xx

  9. TonyKing says:
    13/11/2019 at 11:51 am

    You are an inspiration to us mortals dear friend. We have everything crossed for a successful treatment. Hugs coming your way. All our love and best wishes, Tony & Kris xxoo

    Reply
    1. Jen says:
      13/11/2019 at 11:55 am

      Tony and Kris! Hoping the air is clear up there on Heron. Thanks and much love xx

  10. Sue Butler says:
    13/11/2019 at 10:51 am

    Best wishes Sahi for success with both. 🤞 Sue xxx

    Reply
    1. Jen says:
      13/11/2019 at 10:53 am

      Thanks Sue xx

  11. B F says:
    13/11/2019 at 10:44 am

    I do hope for a successful journey on both buses.

    Bruce

    Reply
    1. Jen says:
      13/11/2019 at 10:47 am

      Thanks Bruce xx

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