My WHAT?

The week of 21 to 28 June was Myeloma Awareness Week. So this is a bit late, but I guess if you’re reading this blog, then you’re already aware of myeloma. But you may not know about Myeloma UK…

Myeloma UK is the only organisation in the UK dealing exclusively with myeloma. They provide excellent support and information for people affected by myeloma.

They work with:

  • Patients, carers and family members, to help them cope with everything a diagnosis of myeloma brings
  • Doctors and GPs, to find better ways of diagnosing and treating myeloma
  • Nurses and other healthcare professionals, to improve care for patients
  • Researchers, to improve treatments, reduce side-effects and develop preventative and curative strategies
  • Other charities, government and the pharmaceutical industry, to ensure patients have access to and receive the best possible treatment and care when they need it

I’ve had contact with them a number of times, as a patient, a support forum member, an attendee and then presenter at two Info Days and as a proof-reader/advisor for a new Information Pack for newly diagnosed patients. Everyone I’ve had any dealings with, from the initial phone reception all the way through to Eric Low, the Chief Executive, is so human – kind, supportive, friendly and genuine. It feels less like seeking support from an organisation and more like calling a friend of a friend for a favour.

maureen lipmanIf you need any further motivation, the wonderful Jewish comedian, Maureen Lipman is not only their patron, but also raises a lot of money and awareness for the organisation.

Her husband, the playwright, Jack Rosenthal died of myeloma in 2004 at the age of 72.

For Myeloma Awareness Week, Myeloma UK have created this cute, simple video to help spread the word. Take a look – it’s short, easy to watch, doesn’t contain any gore at all and has a happy banjo tune…

Thanks for watching! Feel free to share anywhere – that’s what it’s designed for.

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About Jet Black

I began blogging because having been diagnosed with Multiple Myeloma, I wanted to share my experiences of living with an incurable cancer. Through blogging, I discovered that I enjoy writing. I have always chosen to live life for the journey, more than the destination. This is as true for the act of writing as it is for living with myeloma, so these are two things I do: I live and I write!
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9 Responses to My WHAT?

  1. Lorraine says:

    I shared Myeloma UK’s wonderful video with all my friends on Facebook. I am busy making cards out of my photos in order to sell at a coffee morning on 12 September with all the proceeds going to Myeloma UK. I utterly agree with every word that you used to describe the whole team. They are SUPERB.

    Like

    • Jet Black says:

      I guess if you have to have an incurable cancer, this is the one to have. Great doctors and healthcare teams and a brilliant support organisation. What more could we want, Lorraine? LOL!

      Like

  2. nishi01 says:

    Hi!

    It’s great to connect with you! I went through your blog, it’s awesome.

    Would it be possible to share your journey with myeloma with our readers? Your jouney would serve as an inspiration for many of our readers who are struggling with similar situation. We could do an email interview for the same. I write for CureTalk, a medical research blog and we have an internet radio talk show called The Cure Panel Talk Show.
    The link to the website is.. http://trialx.com/curetalk/

    In anticipation of a favorable response.

    Thank you,
    Nishi Roy
    http://trialx.com/curetalk/author/nishiroy/

    Like

  3. Morag says:

    Good film thanks, Mx

    Like

  4. Judy Baxt says:

    Hi Jet, I have LGL Leukemia not unlike Marie-Chantal. Although I have been living with my chronic form since 1995 I am now faced with a Bone Marrow transplant. I am waiting for my sister Elana to return from Israel to Sydney in August. Thank you for honesty and clear descriptions of simple things like hair loss, Hickman line insertion which my late mother had and hospital treatment. I wish you the best of health. Judy in Melbourne Australia.

    Like

    • Jet Black says:

      Thanks for your comments, Judy. I’m assuming that Elana has already been tested and is a tissue match for you? I wish you the very best of luck for an easy transplant and a smooth recovery. x

      Like

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