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.
My 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.
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.
Even 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.
In 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.
A 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.
And 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
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.
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.
One 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)