The sadness of so many losses

I began writing this a couple of months ago but didn’t finish the draft I’d started. Today though I’ve been reminded again of the sadness of loss; it comes and goes with a regular dull rhythm.

On this Spring Equinox, a time of equal day night, a time of equal life and death, it seems apt to complete and publish this post to acknowledge again this aspect of living with myeloma… living with dying, living with old and new friends, in particular, who may and do die. This is the ever-present counter to the busy life I and others actively pursue.

There’s a couple I see regularly in clinic. He had a transplant and has been dealing with skin GvHD for some months. He is very quiet, reserved. She is his wife and usually the one who chats with me. Every time I saw them, his face was a vivid shade of red and his skin looked very uncomfortable, but otherwise he seemed okay if a bit despondent.

A few weeks ago I saw the wife in the office of the ever-supportive Transplant Co-ordinator, Lynne. When I saw her in there alone, I was already concerned. I asked how her husband was and she said he was in the Critical Care Unit, what used to be called Intensive Care. She looked pale, limp and anxious. I didn’t have any words but reached out to touch her shoulder.

I haven’t seen them since, so when I saw Lynne today, I asked her about him. She drew me into an empty room and said it wasn’t good news. I asked if he had died and she nodded. Both of them, the husband and wife could only be in their early-to-mid-40′s. Another reminder of the fragility of the community I now belong to.

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Garden 16.06.09 071My beautiful, slightly feral cat, Willow, who lived with me for over thirteen years, began to have more frequent visits to the vet than I had clinic appointments. As frequently happens in older cats, her kidneys were deteriorating and she had high blood pressure.

IMG_1209

We tried for some weeks to manage her ailments with pills and special diet food, but gradually she was eating less and less, losing weight, sleeping more and more and she started getting quite wobbly when she walked. Trying to give her pills was stressful for her and me. So I had to make the decision to put her to sleep. As you can imagine, it’s not an easy decision. I didn’t want to wait until she was really obviously in pain or dying.

IMG_2266Even now, I think perhaps I left it a bit late for the most compassionate time, but she died peacefully, with the vet coming to my home and Willow curled on my lap (which she never did in living) as she drifted off and became limp. Amazingly, she did just look like she was asleep.

My friend and I both cried. Later we buried her in the lawn of my garden. Placed in the curled up, looking-like-she-was-just-sleeping position and gently covering her with soft warm earth, like a blanket.

I planted crocus, miniature iris and miniature narcissi bulbs above her in the grass, some of which have begun to crop up in the last few weeks. That feels good.

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SanderIn October, I heard that a Dutch man, Sander, whose blog (written in English) I followed and who also had an allogeneic stem cell transplant, died. I never met him and we didn’t have much interaction, but nonetheless, I felt a connection, maybe because he was Dutch. He was about ten years older than me, with a love of music and travel, a wife and two grown sons. I had the feeling we would get on if we were to meet.

There have been other myeloma buddies who have died… Dai, a Welsh man in his late 50′s, who moved to Nottingham from Wales for better treatment of myeloma. We met online via the Myeloma UK Discussion Forum and then in person at a Myeloma UK Patient and Family InfoDay in 2011. He died in November 2013.

And Sean, who although he lived in Chester, had his major treatment in Liverpool, so I felt a connection. Although like with Sander, we never actually met, I followed his blog and he followed mine. He had a stem cell transplant from his brother and a further Donor Lymphocyte Infusion [DLI]. He died in May 2012 aged 46.

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Annie with hose June 2005A few weeks later, not long before the Winter festivities, I bumped into a friend of a friend, Ali in a local supermarket. In the course of conversation, she said how sad it was about our mutual friend, Annie. I felt the hairs go up on my neck. Just the way she said it, I kind of already knew before asking what she meant. She was astonished that I didn’t know, that none of our mutual contacts had informed me. I was too.

Annie, who was a similar age to me and the last time I’d seen her had been in average health, had been admitted to hospital in the summer, with a stomach complaint. While there, they had investigated a persistent cough she’d had for months. She was diagnosed with lung cancer and died within three weeks. Ali was visibly upset telling me. They’d been close friends. I was shocked and sad.

I met Annie and Ali together when I took a group of school leavers on the Nottingham Narrowboat Project about 12 years ago. Annie worked for the project and Ali was working with her as crew. I was so inspired by the experience that I volunteered on the project as a Skipper’s Mate, then later trained to be a Skipper. I have worked on a number of trips with Annie, as well as other Skippers. I only stopped volunteering when I became ill. I’ve seen Annie a few times since, as she lived on a boat not too far from me, so I would sometimes pop in for a chat if I was walking or cycling along the canal.

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May 17.10.09And finally, or probably not… my beloved border collie, May, with whom I lived with my previous partner, Jane. May was found as a stray and handed over to the dog warden with no background history. Jane and I were looking for a dog. We found May at a kennels with just seven days for her owners to come forward or be put to sleep. They didn’t, but thankfully we did.

Despite her fears which led her to occasionally snap or jump up at people, she was a most adoring, sensitive, loyal beast. If she was here with me this evening, she’d have been cuddling up to me, sensing my sadness and attempting to comfort me. What a love!

When Jane and I separated, she lived with Jane and visited me every other weekend, until a point when it just wasn’t working well in the summer of 2010. That was around the time I was frequently visiting my mum in Liverpool because she was recovering from a difficult operation. I was also feeling the fatigue effects of being anaemic from having myeloma, without knowing that I was ill. I wasn’t diagnosed for another six months. We agreed that May would live with Jane, which was sad but also a relief.

More recently, I’d spent time with Jane and May, going for walks together from time to time, so I saw her gradually becoming more and more lame, more and more deaf, but then in the last few months of last year, she began to experience dementia. Poor Jane ended up sleeping downstairs with her, as May would wake up in the night confused and stressed and would bark for no obvious reason.

As this carried on for several weeks, Jane was worn out and it was affecting her health and poor May was not going to improve, despite the vet trying various medication, including valium. There was no joy left in her, in fact she wasn’t entirely ‘there’. To just be sedated to continue living… for what? It was a difficult decision. These decisions always are with a beloved pet.

May liked cream

May liked cream

Jane and I talked it through and made the decision to put May to sleep on a Friday, rather than waiting all weekend. I went over and Jane’s parents were also there. It was a sad gathering, but we were all able to cuddle and stroke her. Whether she was aware of it, who knows? The vets came and gave the injection. Like with Willow, it was very gentle and while it was sad, it was also a relief to let her go, to be at peace.

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Amidst all this, I and my fellow incurable cancer buddies continue living in the face of death. And while I find it hard to hear this from someone who is currently in decent health, who is most likely to live into old age, I am allowed to say this… We are all living in the face of death.

With that thought, here’s a link to an exhibition by photographer, Rankin that was on last year at Liverpool’s Walker Art Gallery, Alive: In the Face of Death, challenging the taboo around talking about dying. I wish I’d seen the exhibition.

sandra-by-rankinOne of the people he photographed, Sandra said this: “Having cancer has made me more aware of how we are here for a very short time and how we should aim to live in the moment. When the time comes, I will embrace death and accept it with grace.” I hope I may too.

Tonight I am also remembering the lovely Libyan woman I met in clinic and whom I still think about, my friend Abir, who also spent her final days in the Critical Care Unit. Sadly I don’t have a photo of her, but I can see her face clearly in my mind.

If that’s all there is my friends, then let’s keep dancing
Let’s break out the booze and have a ball
If that’s all there is…

- sung by Peggy Lee (written by Jerry Leiber and Mike Stoller)

dancing catdancing catdancing catdancing catdancing cat

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!
This entry was posted in * Myeloma, Death & dying, Graft versus Host Disease and tagged , , , , , , , , , , , , , , , , , . Bookmark the permalink.

21 Responses to The sadness of so many losses

  1. Very moving post Jet, made me weep a little for the people and pets I’ve lost. There is a saying about the two things you can count on in life and that’s death and taxes, you can’t avoid the one but you can attempt to postpone the other! I’m happy to keep on dancing for as long as I can and to have those I care for keep on dancing with me. x

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  2. Matt says:

    So sorry for your losses.

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  3. Cheryl says:

    Thank you x your blog has deeply touched me and I will dance today with lighter feet x

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  4. mary louise says:

    Thank you for your post and keeping it real. I know you will keep dancing and when it is time for you to leave, it will be with grace and you will be whole again. Only those living with the face of death can relate. I think here in the States death is like the elephant ant in the room and it doesn’t help when you look pretty normal with this disease. It can be a blessing and a pain at the same time. blessings to you Mary Louise

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  5. Becca says:

    Dance, dance, dance! So much of what you’ve said rings bells. In realising how fragile life is and how suddenly security and certainty can change, has made me feel more alive and embrace NOW more than ever. I’m so sorry for all your losses Jet. So sad. XXX

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  6. bev says:

    I always said that my greatest role model was my grandmother who while dying for 50 years, went on about living. Live each moment and find joy in it. We can look ahead and know that this pain will end, but we also have to live while we are still here.

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  7. Thanks for this, Jet.  It made me cry, but I think the links might help me to deal with my current and impending bereavements.  I’m really grateful.

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  8. I don’t feel qualified to say anything bc my words would fall so short – but that I’ve read and share in your journey.

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  9. Ginnie says:

    I too have been touched by people I’ve never met, just read their story online, and one day it seems *poof* they are gone and I’m ripped apart. I see so many who are oblivious to life, to the feelings of others, but its the wake up call of cancer that magnifies our appreciation of life and people. I wish more understood that appreciation and gratitude. Wish it was contagious too, so they could “catch” it without coming down with cancer. What a beautiful world this would be. <3

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  10. Morag says:

    Hope it’s ok, but here are the words of a song I wrote when my first cat, Molly, died.

    Love not words

    How can I say the world you were to me?
    And how can I tell the empty place you leave?
    How can I find the words to let you know?
    But love not words found a way before you had to go.

    Somehow we knew that soon would come the time.
    Already gone too far you’d crossed the line.
    The fire inside was fading day by day,
    And love not words was all we had to try to feed the flame.

    A language of looks we told in touch.
    Two weary souls without time to save
    Knew that no words could say so much.
    Love said it all, those last lovely days.

    I open my door and start to call your name
    Visions of you disperse like morning rain.
    Silent space where your sweet face should be,
    Could love not words find a way to bring you back to me?
    If only words, love or words, could find a way to bring you back to me.

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  11. Justine says:

    Enjoy your posts so much, thankyou xx

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