Monday, 23 April 2018

Breathy

We know you feel the world is too heavy, but you can turn it all around if you want. Oh yes, you're in charge of what you feel
It's All Good - Superorganism

It's a bit of a soap opera. In hospital, out of hospital. On treatment, off treatment. Well, unwell. It's hard to keep up!

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I was about to post something last week. It would have told a story of recuperation, body and mind. But before I could post it I had a sudden onset of pain in my chest, and within 24 hours I had had my chemo delayed, again, and been readmitted to hospital and put back on all the IV. I was suddenly feeling very unwell and in a lot of pain. Pleurisy - I don't recommend it. So... I've had another 4 nights in here, and I'm feeling a bit better again. I can return home today, and we revert to the plan.

Keep out of mischief. Recover. And next week, I hope to be back on the chemo.

2018, for me, is fundamentally an ordeal to be endured. I'm OK with that. But this succession of delays - being repeatedly knocked off the plan - has really challenged me. It's been rough, physically and mentally. And none of us is at our best, mentally, when we are at our worst, physically. Today I feel optimistic. But my mind, like my body, has fluctuated.

This last week, I've been sharing a ward with three other guys, all dealing with similarly severe medical challenges. There's been a nice sense of camaraderie. Plus I've felt like the old hand, having been dealing with this all much longer than any of them. It's also enabled me to observe, as others grapple with it, quite what a big deal it is - blood cancer and bone marrow suppression. Maybe I will cut myself a little slack.

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That's all you need to read in order to know how and where I am. (I'm OK. I'm at home. Until further notice.)

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Last week, I went to the brand new Cancer Centre at Guy's Hospital. There's a Complementary Therapy Centre there, to which I have referred myself for a sequence of treatments. First up, I had some reflexology. I'm a pragmatic sceptic, when it comes to these kinds of things. Enough of a scientist to reject the premise of homeopathy, for example. But I'm also sure a bit of pampering can have positive health benefits. Having someone massage my feet was certainly relaxing and soothing.

I found the experience quite emotionally intense, which in large part was a product of feeling so respected, valued, accepted. The Cancer Centre there is really wonderful. It's obvious from the moment you check in that the whole building has been designed with patients in mind. The waiting area is divided into lots of little booths - you can sit and wait in a modicum of privacy, rather than in rows of seats. You don't have someone next to you coughing over you, either. And the decor and furnishings... these things matter. King's is a fantastic hospital in terms of quality of care. I'm very grateful to be treated here. But the Haematology Outpatients dept exudes a very old school hospital aesthetic. After all these years, it would be wonderful if my regular visits could be liberated from the worst excesses of hospital-land.

But the feeling of respect went further. When I went in for treatment, the guy began by asking me a load of questions about my diagnosis and my medical history. I've been for a few massages and visited a few spas, these last few years, and they quite often ask medical questions. Those questions tend to feel prying and impertinent. Why would I want to discuss this with you, stranger? And they also feel like a screening process. At any moment I'm anticipating that too much honesty from me will result in the therapist refusing to treat me. On this occasion, of course, it felt very different. I knew he understood. I felt accepted, for who I am. It was fantastic.

Some of you are probably a little sceptical about Complementary Therapy on the NHS. Should this really be funded out of tax? But for me, there was a value in the holistic-ness, far beyond the fact that it was free. As a token of that, I decided to make a £100 donation to charity - the money I might have otherwise spent in a spa. I have chosen to support Basic Needs - a charity working in mental health in Africa and Asia, in recognition that the benefit to me is as much about mind as body.

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While we're on the subject of good places to donate money... I was asked recently to write something for Myeloma UK's quarterly magazine, Myeloma Matters. I wrote about the challenges of myeloma and parenting. Here's a link, if you're interested:

Myeloma Matters, Spring 2018

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And finally, facebook keeps reminding me that a year ago I was in Japan, which has cheered me up no end. (facebook might be an unspeakable monopolistic unaccountable tech giant, partly to blame for trump and brexit. But it can also bring joy.) Next year... who knows where I'll be.

So, in homage to the wonders of Japan, here's a picture of my own cherry tree. In bloom, right now, like me!


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5 comments:

  1. This brilliant piece of writing has made me cry. And donate money. Respect to you, Alex.

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    1. Thanks Tam. I’m glad - for the tears and for the treasure.

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  2. Hi Alex, I hope you remember me. I’m Violeta, we were both in the same PGCE course group at the IOE from 2011-13. Well, I’ve found your blog again due to the fact that my 35-year-old brother has just been diagnosed with Myeloma. We’re all in shock. In the midst of all that, I thought of you and your blog. I will share your blog with my brother because at the moment he is at a loss. Lots of love and respect to you Alex, Violeta

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    1. Violeta. Sorry to read that. The first few months at diagnosis is a profound, horrible shock. It takes time to come to terms with. I won’t pretend there’s anything anyone else can do or say to make that much easier for your brother - or for you.

      But... it’s not as bleak as it seems. Nearly 6 years since I sat, full of chemo, in our PGCE classes, I am still here! And intending to be here for a whole lot longer. Treatment and outcomes are improving and changing very rapidly. It is possible - important - to have hope, be optimistic.

      I’ll be delighted if my blog makes any difference - it’s why I write it. If you or your brother would like to talk, get in touch. (I’ve sent you a friend request on fb.) I can introduce you or him to an fb support group (I’m one of the admins) where there’s plenty of people with similar experiences and stories to tell. Where’s he being treated?

      I hope all is well with you yourself. Are you teaching? Would be lovely to catch up some time.

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  3. I meant - my brother is lost for words. I know your blog will offer him some encouragement.

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