It’s just gone three on the 6th of June 2019. My mum is being cremated as I begin to write. We are not there because that’s how she wanted it. We will be given her ashes afterwards.
This has come about so quickly but she knew it would happen six years ago. In 2013, Mum was diagnosed with MDS. Here’s what she said to me, and to all her Facebook friends, on the 4th of November:
It appears that my sell by date is fast approaching and in an attempt to delay it I will be starting a few cycles of Vidaza, a mild form of chemotherapy, next week.
For the last three years I have been having regular checkups at the haematology clinic in CHRU Limoges. I never quite knew why I had been referred to the unit as I felt that there was nothing wrong with me apart from low blood counts. I was repeatedly asked if I was tired; was I losing weight; did I have infections or repeated colds. The answer was no! I had regular blood tests and annual bone marrow biopsies and after two years I was told that I had myelodysplastic syndrome (MDS or SMD in French). I had a diagnosis and it was just a syndrome! I was given a booklet to read and we drove home happily in the July sunshine. The relief was short lived as I read more about the syndrome but, hey, she said I was low risk so life went on as usual.
MDS used to be called pre leukaemia until more was known about this complicated condition. The bone marrow produces stem cells that normally mature into blood cells. In MDS this function is impaired resulting in a compromised immune system and a reduction in clotting capabilities.
This year, in August, I was told that it had progressed to RAEB 2. The only cure is a bone marrow transplant but the cut off age is 65. As I was leaving the appointment I asked what the prognosis was as I am too old for the transplant – 3 1/2 years.
We now plan to sell our house (and beloved garden) and rent a small cottage in the same hamlet.
In the meantime, please feel free to comment on this and ask questions. Black humour helps me cope…… I won’t be troubled by Alzheimer’s or more wrinkles from sun damage!
The story of her illness and how it progressed is long. She seemed to be stable but always knew that at some time it would catch up with her. At the beginning of this year, she had some good news: there was a clinical trial and she could put her name forward for it. But on Monday 21st January, she told me she’d lost out: instead of the trial drug or intensive chemotherapy, she was to be given best supportive care. This meant weekly monitoring, transfusions of blood and platelets as and when she needed them, supplemented by oral chemotherapy. How did she feel, I asked her. “Fine,” she replied, “but shit scared.”
My sister went out to France at the end of February. She called me afterwards. “I think you need to go soon, while she’s still well.” I was in the middle of a lucrative break from teaching, working at Network Rail. I dropped everything and booked my tickets. My client and employer were utterly understanding.
I visited Mum and Dad in March, for a long weekend. Though she’d been in hospital for a short stay, Mum was out and on good form. That’s the odd thing about acute myeloid leukaemia: so long as you have the treatments, you can appear reasonably well. We held each other for a long time before I left, and we both knew why. That was the last time I had a hug from my mother, and the last time that I was able to put my arms around her properly.
I returned to full-time teaching, making it clear that at some point I would have to break off and be with my mum. I was one of four staff working there who’d lost or who were about to lose parents, and the Head had lost his Dad as a child: everyone understood. It seemed so theoretical, a necessary precaution for a remote eventuality.
I’d already bought Mum and Dad an Amazon Echo, in order to make the time we had left full of idle chatter. Next I decided that Dad needed decent hearing aids, so that we could talk and so that he could be in control when the worst happened. My sister and I bought them for his eightieth birthday. I also acquired a pair of airpods, so that I could make even more use of any spare time that I had. From then on, I’d pester Mum with calls in the car, in the garden, on walks. Anywhere. I wanted to have her voice with me for as much and as long as possible. The chat was easy and frequent, better than it had ever been. We exchanged countless pictures of anything and everything. I was lulled into believing that we could keep it up forever.
Then, on my Dad’s eightieth birthday, just last week, he called me. When I saw my wife’s face as she carried the phone to me, I knew. Mum was in hospital again, and the consultant had taken Dad aside to tell him that she didn’t have much time left. The life-saving transfusions were causing such terrible convulsions, and their efficacy was diminishing at such a rate, that there was no point in continuing them. My first instinct was to fly out immediately, but Dad and I agreed that this would only worry Mum, who hadn’t been told. I spent the day at school, unable to write the reports I’d gone in to complete. All I could do was wait and worry. I texted school to warn them.
We had a few conversations on Friday, mostly about the rubbish food and the very handy fridge and built-in chopping board beside her bed. She’d begun the day by saying, “Morning and I’m feeling fine!” I’d replied with a link to Nina Simone singing ‘Feeling Good’, knowing all the time how brief this would be. “Oh yes, exactly!” she said. The irony hurt.
Mum phoned on Saturday 1st June, at around 11am. She’d been told, and she wanted to let me know. I was the first person she had spoken to. I sat there, caught in a necessary lie, as if hearing this news for the first time. She was calm. I said I would come as soon as I could. And I asked what I could do. “Look after Dad,” she said. “Be kind. Don’t piss him off.” That’s what I have done and will continue to do, so long as he needs me.
My sister and I agreed to fly out together the next day. I asked Mum where we should go when we arrived: to the hospital or to the house. “To our house,” she replied. “Much better.” On Saturday night, she texted me: “The poem that keeps coming into my mind today is ‘Do not go gentle into that good night’…” And all I could do was prattle on about it being a villanelle. I wanted to write my own, an invocation of quite the opposite, willing a gentle and peaceful end for her.
It breaks my heart to look at Mum’s iPad and see that she was tracking our flight as it approached Limoges, something she always did. I picked up the hire car and we drove home. Mum was still in good form, firing off instructions from the hospital about what needed eating and doing. Dad hadn’t been eating properly, and there were four packs of big fresh prawns that needed eating up. I made a huge Pad Thai and we encouraged Dad to eat as much of it as he could. It was a reasonably calm evening, though both my sister and I called our children and asked if they wanted to come out. My nephew said he did, as did my daughter. She’d not wanted to ask, as she thought it would be selfish. We booked tickets for both of them and I agreed to pick them up from the airport the next day. We went to bed, hopeful for the next day.
I was woken by my Dad, who’d had a text at around 2:15am. Mum was in agony and wanted him to come as soon as he could. He dressed and drove off with my sister. I stayed for a few minutes to sort out the house and the pets, then set off after them. For a moment, as the car refused to start, I sat in their drive and cried in my panic. What if I couldn’t get there in time? Seconds later, it came to life.
When I reached the hospital room, I met the consultant and his team: they ushered me into the room, faces and voices gravely serious. The first thing I saw was Mum’s legs, moving on the bed. I was in time. But I was shocked when I came in. Her arms were mottled with many, many small haemorrhages, livid purple bruises. The corners of her mouth were encrusted with a small trace of blood. And, as I looked into her mouth, I could see that her gums were bleeding. I maintained my smile, then and throughout my remaining time with her; not a fake smile: one formed from the surge of unconditional love I felt for her. But it was hard to keep my composure. She was writhing in pain, struggling to find any way of getting herself comfortable. She was too weak to haul herself properly with the handle above her, but managed to roll onto her side. I came round behind her, put my arm as much as I could around her and kissed her, lingering for as long as I could. I’d rushed out of the house and now regretted my haste as my unshaven chin rasped against her cheek.
Though the pain was like a pervasive cloud, preventing her from adopting her usual bossy, dark-humoured conversation, Mum was lucid. I explained that I’d be in and out, picking up the kids during the day and going back to feed the pets in the evening. To the extent that she could, she continued to take an interest in everything we had to tell her. She was also growing impatient with the wait for someone to take away her pain. Mum is. Was. Mum was a great complainer: as she’d grown more ill, I longed to hear her small complaints, signs that she was still alive and well and with us. Her carers came in to help her shower. Though frail, she was taken gently to the shower room and came back looking more like herself. But the pain was still strong.
At around 9:45 a doctor came in, flanked by her juniors. Doctor Julie Abraham’s treatment of my mother will stay with me for as long as I have memory. She was so quiet. She examined Mum, softly asked her questions and then, stroking her arm, her leg, her hand, she told Mum what was going to happen. Mum would be given painkillers that would make her as comfortable as possible. There was no talk of hope; just of comfort. And that was perfect, said and done with such tenderness.
Mum settled down and was first given a small dose of morphine through her canula. It didn’t seem to be having much effect, so she was given a pill for her to keep under her tongue. Mum hadn’t had morphine before and was concerned that it wasn’t working. When they gave her a morphine pump, I explained how good morphine could feel. The surge of wellbeing, the not caring about pain any more, the pleasure of the next time you press the button. I willed its effects to start. And they did. She had initially registered pain at 10 out of 10; gradually it fell to 8, then 5 and finally she was able to say that it no longer hurt.
Somewhere along the way, perhaps when she was being showered or changed again, after a bleed, Dad, my sister and I were ushered into the consultant’s room. We were almost comically crammed in. He told us that Mum had very little time left, that he was shocked at how much she had changed from the day before. He explained that the white cells were now multiplying so fast that there was nothing they could do to treat her. The pain, he said, was in her spine and pelvis because the cells were crowding the space within the bones. Eventually, he said, they would so fill her blood that even extra oxygen wouldn’t allow her to breathe. No gas would be able to pass through her capillaries. At the back of my mind, I rehearsed the science lessons I’d taught a few months earlier, while I focused all my attention on what he was telling us. The aim of Mum’s remaining treatment was to ensure that she felt no pain. No. Pain. He repeated this at least once: it was clear what would now happen. We nodded and agreed with what he told us, whatever he asked us. And we went back to Mum.
The three of us sat around her: my sister and I sat in front, while Dad moved his chair close to her on the other side. For as long as I could, I just fixed my eyes on her, set my smile and ate up every second I had left to see her. She slipped into sleep.
I went to pick up my nephew and daughter from the airport. Though the situation was clearly grave and final, I tried to be as cheerful as I could. In the jumble of the afternoon, we bought food and ate it, sat and talked. And somewhere along the way, my daughter sat close to Mum and stroked her. Our love – from all of us – surrounded Mum that afternoon.
I had to go home to feed the pets and didn’t want to tear my daughter or nephew away from Mum. So I made a two-hour round trip and came back to find them in conversation with my sister and father, around Mum. She was sleeping, her breaths short and clutched at, her chest rising in jerks, but she was in peace.
At some point, they all left me alone in the room with Mum. A deliberate act, I presume, to allow me to say all that I had left to say. I moved closer to her left-hand side and held her hand. It was hot and sweat-drenched. I gently clutched it, leant forward and spoke into her ear.
I’ve just tried to type what I said to her. But it looks crass and awkward. Eloquence failed me as my feelings flooded out. I kissed her forehead and her cheek, time and again, softly, as I had done countless times to my daughter as she slept. I massaged her temples and stroked her forehead. She was, at one and the same moment, my mother, my wife and my child. I wanted that moment to be endless; it wasn’t.
Before we went home for the night, we helped Dad set up the bed where he’d spent the night next to Mum. It still didn’t seem real. On our journey back, it didn’t seem as if we’d never see Mum alive again. We sat at home, we talked, we ate snacks, we slept.
The next morning, I drove back to the hospital with Dad’s medication. On the way into the hospital, I spoke to my aunt, Mum’s sister. We talked for ages, as we always did, and I told her everything I could. It calmed me down, ready to go up to see Dad. But I then called Mum’s friend, as she seemed the closest to her. We’d never spoken before, but Mum’s last message to me had been about her: Mum’s dying action and intent had been to connect us. Over a crackling phone line, I heard her. And, hardly able to talk for gasping sobs, I told her that Mum was in her last hours. She thanked me, we said goodbye, I composed myself and I went up to the room.
Mum was still breathing in that short, urgent way, but otherwise in peace. Dad had managed some sleep. He said that Mum had occasionally coughed, as if to clear her throat, and had even lifted her hand towards her mouth, but had otherwise been still. I returned to the house. My nephew, my daughter and I went food shopping and I made lunch for us all. At around 1pm we set off again for the hospital. It was just before 2pm when we walked along the corridor towards Mum’s room.
I was a few metres back. I could see something in the faces of the staff we passed. And then I spotted Dad. He had his arms out, his hands open wide. I couldn’t make out the expression on his face, but I could see by the way that he moved and stood that Mum was dead. My sister and I joined him in the room where Mum’s body lay. Her breathing had become softer, Dad said, at around 1pm. Then, as he busied himself beside her, she stopped breathing. He only noticed when he turned to look at her. It could not have been more peaceful.
We were asked what was going to happen to Mum’s body. When would the ceremony be? What arrangements should be made? Overwhelmed with calm, and speaking for Dad, who’d become speechless with grief, I told them what Mum had texted me that last Sunday morning: “I’ve arranged for my body to go straight to the crematorium. It’s decided now. It really is best for me.” To her words I added, “Elle n’est pas lá.” That is my absolute belief. This frail shell wasn’t Mum. She no longer had any need of it.
I won’t speak any more about Dad’s grief: that is his to express. My sister eventually led him from the room and, with my nephew at his other side, took him back to his car. My daughter agreed to stay with me and help clear the room. We spoke quietly and calmly to one another, as equals. I will always remember my daughter’s care and composure, and will always be so proud of her and grateful to her for it. She is her mother’s strong, practical daughter, as much as we both take so obviously after Mum. She left me alone for a moment; I kissed Mum’s forehead again, I held her hand one last time and I left.