Shock, collapse… to curious surrender

Of course, I couldn’t fully take it in.
MYELOMA?! What is that? What has it to do with me? Cancer? Death? Illness? Disability? Disease? Forever? Incurable?

They had let me go home on Sunday night – a night off! Monday morning, I was back on the ward, with a friend beside me. I sat on my bed with the haematology specialist nurse explaining to me that what I have is an incurable cancer of my bone marrow… that while it can be treated, it is not curable… that I will have a shortened life because of it… possibly 10-15 years, although medical advances are constantly moving on and who knows…? that means that I might be dead by the age of 65… that if I didn’t take any treatment, I would die within months… that I could take part in a clinical trial… that I will face a transplant of my stem cells… something I have yet to investigate in full… but it sounds very scary and not normal and not what you expect and not what I was expecting… not what I was wanting in my life.

Am I getting the message through? Do you understand how this might feel? I’m not sure I do…

One of the strangest things I experienced was a total bodily collapse… due to shock. Literally, my bones, tendons, muscles, anything firm in my body which would normally hold me up just totally gave way. I gave way, I became liquid, jelly. I was crying and my jaw wouldn’t work. My hands attempting to hold on to my friend were like limp empty gloves. My spine seemed to fold. My voice became a strange animal grunt. My friend held me safely. It passed.

We were in Sainsbury’s in Beeston. They have an aisle of “ethnic” foods… one part of which has Jewish/kosher foods, including Yahrzeit candles. A Yahrzeit candle is a special nightlight that Jewish people light to commemorate the anniversary of the death of a loved person. I saw the candles… DEATH! My body collapsed… death… not something I often think about wandering around a supermarket. Death – an actual reality facing me now. I tried to hold on to the shelf, but again the collapse came, nothing firm in my body at all. My friend was there immediately and just held me up like a puppet.

There were a couple more collapses, quieter, gentler, more private collapses, in the car, at home on the couch, held gently, firmly in loving, supportive arms and gradually less distressing, less intense, less frequent.

This is taking some getting used to… None of it in my control. None of it at all!

The next part is also beyond my control… but maybe becoming less out of control… a strange, curious surrender. I can’t do anything but surrender, to be honest. The effects of the disease and the medication mean that most of the time my head is spinning, fuzzy, dizzy, can’t concentrate or make a lot of sense. I watch on from the sidelines… a spectator of my own life. Curious!

Please don’t expect me to make complete senses… or any sense at all. Please don’t expect me to be able to do the things I would normally be able to do. Competent, capable, independent woman I was. Now I can’t!

So, I simply have to go with what my body needs to do. It sleeps, it collapses, it’s confused, it wakes up in the middle of the night, it gets scared and it completely surrenders to all that is happening, it aches at times and can’t move or it’s slow and breathless but able to move… able to go for very slow careful walks. I hobble like an elderly person. I’m only 49 for goodness sake!!!! It’s not me! Not who I was, but it seems now that this is who I am… at least for a while.

They reassure me that it will improve. They tell me that the first eight weeks of treatment, the body has to adapt and it will get better. I will feel better. They reassure me…

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5 Responses to Shock, collapse… to curious surrender

  1. Mavis Nevill says:

    Thank you for such an honest post. Hold on to the hope for the future.




  2. Matthew Middleton says:

    …10 to 15 years – a certain limitation that grabs ones attention!! Who knows for anyone what lies beyond the next 10 years? Don’t forget that we’re talking 10 to 15 years from now – 2011. Where will medical & medicinal advances be in that time? If you take a look at the Human Genum project as an example, it offers the prospect of great advances and breakthroughs in the next decade. So, although there are no guarantees, hopefully this horrible disease will have greater treatment opportunities and a wider variety of treatment options for all affected. Keep strong & God bless.


  3. Marisa says:

    yes. thank you for this honest post. i’ve been wondering what this has all been like for you. it’s so hard to imagine from the outside. i think about you often, so it’s good to have these posts to check in and read up on what’s going on. please let the body do what it needs to do: collapse, sleep, heal, rebel, whatever. so glad you’re part of this cutting-edge research! love and light…


  4. Deb says:

    Also, I read that with young people with this condition two stem cell transplants are sometimes possible (another one if the remission looks like it is ending). That would give 30 years which would be a blessing to anyone.

    It does sound all very scary at the moment. I send you a hug.


  5. I think the 10-15 years included multiple transplants, remissions and maintenance treatments, Deb. But yes, a second transplant is possible, as is one from my brother if he’s a match and willing to do it.


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