the last word

You know me well enough to excuse my warped sense of humour; if there was a support group for Poor Humour Addicts, I’d be the leading light.

“My name is Elaine and I find the darkest things funny.”

Alas, it’s a familial trait so I’m both helpless and blameless. My maternal family had genetic cancers and my paternal side had cardiovascular heart disease, so throughout my childhood, relatives dropped like flies, and visiting family homes for Shiva gatherings was a social norm. I became a dab hand at arranging fruit platters and baking kosher biscuits. I also ate of lot of cheesecake. And I mean a LOT. I’m sure it helped the heart disease enormously.

It hasn’t escaped my attention there’s a virus doing the rounds, and in a crisis situation, a sixty-five year old woman with terminal cancer is not going to have much luck in the ventilator lottery. This doesn’t feel as dramatic as it sounds because while I’m in favour of women and children getting first dibs at the lifeboats, I can see the logic that healthier people gain more bucks per breath from mechanically aided living.

The corona explosion has given humanity a glimpse of how a cancer diagnosis feels. Full of shock, awe, disbelief and grief, you can neither see nor think a way around the words tattooed on your eyeballs; I AM GOING TO DIE. Statistics gain new meaning; depending on your situation, you either cling to them for a lifeline or disregard them with contempt. The alien language of diagnosis leaves you as speechless as the prognosis leaves you breathless, and trying to control the engulfing catastrophe is as pointless as panic buying for the apocalypse.

Self Isolation is not unlike chemotherapy, except you get to keep your hair. With an exposed immune system to protect, the norm is staying home, adapting to shrinking boundaries, dodging unsolicited hugs and finding out who your friends are and aren’t. Vulnerability and panic are just feelings, they have their own agenda. My answer is to be exactly where you are, without considering the future or mourning the past.

My only concern is that I didn’t see this coming. In my attempt to organise a painless demise I’ve prepared a hundred good ways to die, and becoming a virus demographic never even made the top forty. Four years ago, I had an appallingly bad reaction to a chemotherapy drug. As I lay in my hospital bed connected to bleeping hardware, I was pleasantly surprised how easy it would be to die; you just had to let go. Letting go of the bad things was simple, and the good things slipped out of reach once you had absorbed them internally. The thing I could not quite manage to do was take my hand off Bruce’s neck. He stayed with me through the long night, supporting me with his horse strength until I was safe. We counted the bleeps on the bedside machine until our breathing became united. You don’t have to ride a horse to be carried by one.

When I left hospital a week later, I stopped all treatment; what cures also kills, and I felt safer with the cancer. After twenty-five years of cancer treatment, I won’t even try to describe the relief of knowing there would be no more drugs, nor the guilt I felt (still feel) for leaving Mark hopeless.

I had a lot of time to think, recuperating in bed at home. As the chemotherapy toxins exited my system, the skin completely peeled off my hands and feet, and I knew I’d made the right decision. When the Macmillan Nurse visited, we made a plan; I didn’t want my heart shocked to oblivion on a hospital bed so I signed a Do Not Resuscitate order. I like being ready. A few weeks later I was out of bed, waving my list of Things That Need Doing Before I Go. There was so much more time in the day without chemotherapy constraints!

Top of the list was my burial and funeral; I didn’t want to leave the organization to Mark, so we made a surreal trip to the nearby Woodland Cemetery. A director greeted us at the door. He had the perfect balance of being businesslike and human, and as he showed us funeral plans, brochures and prices, neither of us felt it was anything but ordinary to discuss my coffin, and sojourn at the mortuary. He took us on a buggy tour of the cemetery, and we chose our burial plots in a section overlooking fields where I have had many beautiful rides. Mark’s burial plot is at the end of the row (to give him a bit more legroom) and I’m next door. We have yet to decide which native trees we will plant. We have never owned land before, so I semi-seriously asked the director if we could make use of the space until we needed it, and perhaps plant some green beans or potatoes. Laughingly, he said that wasn’t allowed, but we were welcome to come and sit on the bench and picnic. Sitting by your own grave eating egg sandwiches might be too morbid even for me.

I’ve chosen the music and orators for my funeral; it’s going to be a sombre affair with a solo violinist playing the Ashakan Farewell. I don’t want brightly clothed mourners and happy-clappy music, because I think funerals are an occasion for grief, and we don’t give ourselves many other chances to express that as succinctly as we do at a graveside. On my last journey from home to the burial ground I want to travel in the back of the pick-up truck (which Mark isn’t keen on) or in a horse and cart. Not a posh glass coach with plumed horses, just a plain old cart like the one in which Captain Troy brought Fanny Robin home, in the 1967 (best) film of Thomas Hardy’s Far from the Madding Crowd. The only problem is, I’ve chosen a wickerwork coffin and I’m not sure what happens if it rains. Do they wrap me in plastic?

Take it from me that planning and paying for your own funeral is very liberating. In times of immense uncertainty, its good finalise something so final. I had accepted my situation. Mark did not feel the same, but I try very hard not to carry the weight of his burdens too. 

Have you ever thought what your last words would be? Probably not, but it might be worth considering. I want to say something profound, something witty that people would repeat with reverence. I would become an internet meme. A greetings card quote. Be immortalised in cross-stitch on an heirloom sampler! But when it comes to it, I’d probably struggle to recall any line I’d previously practised. The drugs would blur cognitive thought, and stop my mouth forming coherent speech. In a last semblance of elegant wit, I’d lift my head, pause and dribble, smile my most enigmatic smile, and Ta Da! just as the room fell silent and all attention was on me, I’d crack out the most enormous fart. How do you embroider that?

A couple of weeks after booking the funeral I started to get restless about dying. Nothing much was happening; the ‘last treats’ had stopped being treats, and eating ice-cream for breakfast quickly loses its allure. Waiting to die was a bit boring. I felt very robust, had an inkling of an idea for a new business venture, and Bruce was looking particularly well in his summer coat. In the early hours of the morning, I began wondering if I’d made the right decision. When I came down for breakfast Mark was sitting on the arm of the sofa looking sombre.

“You okay babe?” I asked, unable to avoid the sorrow in his eyes.

“No,” he replied quietly “I am not”.

I moved his coffee cup to one side and perched on the table opposite him. “Tell me?”

“I don’t feel you’re ready to give up. I don’t think you’ve reached that time yet, and we’re talking ourselves into something that shouldn’t be happening.”

“No, I mean yes” I said. “You’re right, I’m not ready”.

His eyes flicked in surprise as his head did a little double take shake.

“I was thinking about it last night” I continued “and I think maybe its worth one more shot with a different chemo. Dr Chakrabarti said he had something new, we’ll go talk to him.”

Mark and I had reached the same decision separately but together. The oncologist and all the nurses hugged me, and then Mark, when we told them we were back to continue treatment; I think he got huggier hugs than I did. Eribulin was the new chemotherapy drug, it worked, and I stayed on it for three years until I swapped to a specifically targeted treatment nine months ago. I’ve always taken an active part in my treatment, and feeling I have options and a degree of control have served me well. I’m extremely fortunate that my chosen oncologists have treated me, as well as the disease.

Coming off all treatment at that time was the right decision for me. Facing up to the nitty-gritty of death, and knowing I wasn’t ready helped process the reality of living with cancer, and not dying of it. An elective death is no longer a priority, I would rather it was a chance meeting, and I’m in no rush to have the last word.

13 thoughts on “the last word

  1. As positive as ever ! ,funny thought of you yesterday as painting the bee hive and garden benches all those little jobs been meaning to do for ages .taje care L💕bunnies in closthes !!

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  2. WOW! Just WOW! Humbling, uplifting, motivating. Yet again I cried, I laughed and I agreed wholeheartedly. No Elaine, you don’t have to ride a horse…… I get so much support and perspective from your blog. Your generosity in your honesty is a gift ❤️

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  3. So interesting, not surprising though, to wake up and read this today. My will needs updating, my horses and my dog need a more specific plan for life without me, and I have some, though not many, of the risk factors for the great equalizer that is Coronavirus. What a complex feeling, to choose life and embrace it while knowing that the choice can only be temporary until the Big One arrives. I continue to be warmed by your honesty and clarity and your sense of humor, however it might be described. Morbid? Not really. Gallows humor? Welcome to the show, folks! Your cemetery plot sounds lovely and I think egg sandwiches there would be perfect. Once we’re allowed out.

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  4. We are all in the process of dying; the curtains are open and dark humor is a comfort, an affirmation of the best part of us, even if religion might disagree. It’s hard to say how in love I am. You know how I love your husband. The photo is dynamic. Not just the magical forest you live in, but the image reaching up after falling down seems the story of life. At this age of expendability, I notice I value my friends so much more. I am besotted by sunsets; the pastel glow it puts on all of us. Sweet and a bit moldy. Thanks, Elaine. In case I go first, could you think of some last words for me, too? Something dark and witty.

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  5. Wow Elaine. I seemed to have missed a few of your blogs. They are amazing .”An elective death is no longer a priority, I would rather it was a chance meeting, and I’m in no rush to have the last word.” – you manage to combine profound with humour in a way that slides right in (to me). I had a very good friend plan her own funeral last year – wicker coffin and woodland plot. She danced on her own grave before she died as she wanted to be the one who did it first!

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