Alys's Story

Alys and her mum Veronica had always had a loving but complicated relationship and Veronica's protracted death from cancer brought many of those difficult feelings to the surface. Here Alys talks about how those last months showed her a different side to her mum and, in many ways, brought them closer than they had been for years. She also talks about the emotional pain of watching V deteriorate, struggling with her 'pre-grief', and how her grief has changed over the three years since V's death.

It was not exactly clear how long my mother had had a small mark on her sternum, but by the time it was properly diagnosed she had been transferred to pretty much every department in the hospital, and the mark was getting bigger. The diagnosis was of an incurable cancer, presenting unusually on the outside of the body, with a gloomy prognosis and no treatment.

I’m not sure that she ever really believed that she wasn’t going to just carry on and on.

We never discussed it, she literally lived from one day to the next, although in the early months my sister and I tried to fulfil some “bucket list” requests, without calling them that. So, we had a wonderful weekend in Paris very early on, and a trip to Wells-next-the-Sea, lunches out and peregrinations to meaningful places. We thought this was do-able, and although the future wasn’t something we liked to dwell on, we managed.

Veronica in Paris with her fruits de mer platter

As time progressed, and her geographical world became smaller, and her life revolved round regular medical appointments to dress and inspect what she called her “wound” (but was in fact the tumour), the pre-grief and anxiety set in.

In some ways it’s a wonderful thing to have time with someone, knowing they won’t be there for long, but it’s also a permanent state of fear of the unknown and the when exactly it will happen, and the how it’s going to be.

Still, she soldiered on, determined (an apt word for my mother in general) to be independent, very mistrustful of any cancer-related groups or activities; “Why, if I was feeling well, would I want to hang out with a bunch of ill people, when I could be meeting up with a friend for lunch?”.

She had a point.

But in early August, she had a serious episode where her pain could barely be contained, and she had to be admitted to hospital. She spent seven weeks on a Respiratory Ward (because they weren’t sure quite where to put her), making close bonds with many of her nurses, and always with a constant stream of visitors. I think back to that time with fondness in some ways, because even though she was deteriorating, we had some really good days of reminiscing and chatting, and she was as sharply observant, witty and brilliant company as she had ever been. I still have the texts she sent me with her wry observations of the ward comings and goings, interspersed with updates as to which visitors were coming when, and all in her inimitable text shorthand, which sometimes took a few minutes to decode.

My sister and I shared the responsibility and resolved that one of us or both would be with her every day, and thus we settled into our new and surreal routine of hospital and home.

My relationship with my mother had always been complicated - there was immense love and loyalty on both sides, but we had also had some periods of disagreement and difficulty over the years. This hospital stay, without doubt, brought us extremely close. Probably the closest we had ever been, and the Veronica I saw in those weeks was in some ways the best version of her, without the sharp edges and challenging lifestyle.

Veronica and Alys in 1976

Over the two months she spent in hospital she diminished medically, needing constant attention to her now enormous fungating tumour (as horrific as it sounds) consuming her from the outside in and covering almost all of her chest area, and unable to eat as the tumour blocked her stomach. She was fed intravenously, (which was hard to bear for a person who had loved cooking and all things foodie all her life) and there was a huge tube up her nose to drain bile, the clearing of which made her vomit the awful greenish black fluid with regrettable regularity, sapping what little strength she had.

Despite all this, she was cheerful and accepting of her situation, and never once complained, although we could tell she was exhausted and in a great deal of pain.

Eventually she was moved to a nursing home and from there to the hospice, where she defied expectation and clung on for more than two weeks after all her intravenous feeding had been stopped.

I think by that time I was in a complete blur. I felt enormous guilt for having to leave her to get back to my husband and children every day, and yet I needed the space, away from that extreme emotional pain.

Watching her lessen from the charismatic figure she had been, and that I had spent so much time with in the last few years was agony. Knowing the end was coming was unbearable. I refused to cry; it seemed weirdly wrong to cry before she was gone, so I held everything tightly in. I couldn’t make small talk with people in shops or the playground when collecting my children from school. Everything seemed so banal, and I felt utterly disconnected.

In the last few days she stopped speaking at all, and this seemed a cruel blow for a highly articulate English teacher who had delighted in words and books and talking. On the last day she had to be sedated as she was very agitated, and it seemed to us she was still trying to communicate something, but was unable to.

That is something I still struggle to deal with. That, and the fact it feels as if she essentially starved to death. But my sister and I were at her side, as we had promised we would be, and she left gently in the early hours of a November morning, as the sun rose.

I found New Year’s Eve excruciating that year, and I couldn’t articulate why initially. We had no plans to go out or celebrate, and yet I had a heavy, dragging sense of panic and sadness. In the late afternoon I realised what it was. I wasn’t ready to live in another year that she wouldn’t exist in. It sounds silly, but it seemed as if things were moving too quickly, I hadn’t had time to deal with everything and the world was cruel to turn the calendar page without her.

The clearing of her house felt like losing her all over again. Quite apart from the fact she had always been a terrible hoarder, so that the task was immense, my sister and I sometimes had to think very hard about what to keep - who were we to judge what was important, and how could we guess the resonance of that particular object for my mother? Were we doing the right thing by getting rid of it? It was a draining and intrusive process, but although painful, it seemed some kind of line had been drawn when the house was empty and sold.

Driving solo, long distance, about 5 months after her death I had to pull over at the side of the road in the Highlands to let out a primal howl which I couldn’t contain. I cried a lot in the shower so my children wouldn’t see me upset. For at least eighteen months I couldn’t look at or have any photos of her around, because I couldn’t bear the thought of her being stuck in that moment, just a woman in the photograph. I often think “Oh, I must tell mum about that”, and then immediately remember with that sinking, sick feeling that I can’t.

I miss having a mum, and I miss Veronica.

She could be contrary and maddening, but also by turns a truly remarkable person to spend time with. I think I’m still processing the trauma of watching her decline and die in the way she did. Although I’m grateful she reached the age of 74, and saw her daughters married, and met all her grandchildren, I wish she hadn’t suffered quite so much. And had had longer with us.

Yet if there’s one positive thing I can take from the whole experience it would be the fact that she was able to plan every detail of her funeral, and we were so grateful to know that we had done the right thing by her, exactly the way she would have wanted. You wouldn’t have wanted to disappoint her. As we said in her eulogy, “Our Mum was Mighty”.

Happy Hour

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