Dying

When I was working, we had patients dying all the time. They used to die in threes, or so it seemed, of all manner of causes, at all ages. We had a list of palliative care patients and they usually were on there because they had been issued with a DS1500. A DS1500 is a form that says you will die within a year or six months. It is a death sentence, created by the government to give you fast access to disability funds, and to pension payouts. I had known some of these patients for years. One had had a cancer in the 1980s as a youth, and been left with suppurating radiotherapy burns which still needed dressing three times a week after twenty years.I had seen that patient three times a week, because the appointments coincided with my shifts, for several years when the cancer came back and they were gone in weeks. The weird thing about working in a GP surgery is that you get to know these patients really well, until they are dying and then they drop off the radar. They become restricted to home visits and fasttracked phone requests for medication and dire oncology letters. The terminal rarely visit the GP surgery. In eight years, nobody died there. We had a birth. We had bloody emergencies in the waiting room. But nobody died. One person had a heart attack and died an hour later in A+E but I never saw anyone die in front of me. Death became everyday, something we all sympathised and empathised with, but the nearest I came to the reality of it was the grief stricken relatives in the weeks afterwards. It changed my perspective on what 'old' was, partly because I was but a youth myself, but partly because teenagers were cut down alongside the very elderly. The idea of death occurring in generational order vanished as I saw grieving spouses and parents, young grieving children, grieving grandparents. Grief doesn't give too much thought about how old the dead are, only about what is lost, be that potential or memories or both.
I became obsessed with death, surrounding myself with literature on pathology, interested in the myriad ways the body could fail, and from there, an interest in more generalised anatomy. But I never saw anyone die.

My first experience of dying predates this, of course. My friend Daisy Fuller. She died in 1995. She was ten years old. She was ten days younger than me. She had leukaemia and hers was the first funeral I ever went to. I was in the choir, and the church was packed and we sang. I don't remember what we sang. I don't remember seeing her coffin. I still visit her grave whenever I'm in the area.
Then my baby brother. He would be seventeen now. He was very teeny tiny. We had his coffin the house the night before the funeral, and it was the only time he ever came home. His name was Thomas. We don't forget him. He's buried just across from Daisy.
Then my grandparents. I was sixteen and they died within eight weeks of each other, both of cancer. Grandad went first, suddenly it seemed to me. Granny a little after after what felt like many months of illness, but was barely eight weeks.
There have been so many others since then, those I loved, those I barely knew, those who were kind to me, helping me gather chickens as a panicking teenager and those who gave me lifts to work. But I never saw them die.

It took two months to realise Mum would really die. Two months. I was terrified when she first got ill. One Sunday in June, I went straight to her house from a day out hoping that she wouldn't be as ill as she sounded. Alas, my mum lacks the clinical signs of infection and the only indication she wasn't right was a slightly raised pulse. I thought she would be OK with antibiotics. She got worse. I sent her back to the doctors because she was afraid to take herself. I told the doctors I thought she had a bowel obstruction. They missed the tumours. They sent her home with another pack of augmentin.
And then she went on holiday, and her bowel burst and poisoned her and I still don't know how she survived. My dad rang me and told me her bowel had burst and she was going to surgery and I had faith, faith in medicine, that she would survive and she would be OK and this was horrible but also the best thing because she would be OK. I told my siblings the same. This was unhappy but at the same time, survivable. She was in the best place, and it was unfortunate that the best place was miles away, but she was safe.
Later that night, Dad told me what the surgeon had told him, and I travelled to be with him while they told her. I still had hope. I still thought it would be OK. They can do so much for cancer these days. They can do so much. We went to see her in ICU, and she was so pleased to see us, and me and my dad sat with her while the surgeon told her what he had found. When he said they wouldn't have operated if they had known, I thought my last spark of hope died. I was wrong. Metastatic adenocarcinoma of unknown primary. Multiple metastases. Circulatory shock. She recovered at an astonishing rate, and was able to come back to Peterborough.
The surgeons in Peterborough were optimistic that they would get her fit for chemo, despite Mum saying over and over that she didn't want it. And then they couldn't give it anymore, and I think that was a small relief to Mum because she hates and fears hospitals. When she was first discharged, I felt so absolutely responsible, the way you do when you go home with your firstborn. Responsible for keeping her alive, for keeping her comfortable, for looking after her.
I don't feel like that now. I realised after a particularly bad weekend that, no matter what I did, I would not ever be able to save her. I already knew I couldn't, but knowing objectively that you can't, and accepting it are two totally different things. Mum's like the knight in Monty Python And The Holy Grail, armless and legless but still going. But the reality that I would have to watch her die was slow to come, and hit me with terrifying force. I lost my grip and I fell down a hole for three days, and then I came back up and I felt more at peace.

She's still here. She's STILL HERE. She is still alive, and she can sometimes talk though she sometimes can't, but she can give me a kiss and I can stroke her hair and moisturise her and she is still here. She is still Mummy for a little bit longer. I have stopped expecting her death with every silence, stopped panicking at every text, stopped thinking ahead, stopped trying to save her, stopped thinking it is my responsibility to save her and stopped feeling guilty for Not Doing the thousands of things that would have made no difference.

We don't know when she will die. We have never known when she will die. She has always been certain that she does not want to know. She does not want us to know. She has known too many people given six months who have had years and too many given years who have had weeks. She does not wish to labour under sentence of death. There's a strange feeling of being adrift because Mum no longer goes to hospital. Who is in charge? Does it really matter? She is in charge. She knows what she wants. She is mighty in the face of death. We love her so, so much. We just want to keep her.

She's still here.