Chapter 1: How to Watch Your Sister Die: Pre-Diagnosis, Apprehension & Anti-Doomsday Mentality

*Written 27th July, a week and two days before my sister died*

You can’t know you’re in it until the tidal wave has hit you and you’re reeling from the absolute motherf*cker that is hindsight. We easily take for granted the moments we should cherish, but if we were to beat ourselves up about that after the fact then we’d all end up shaking hovels on the floor asking, frankly, to be put out of our misery.

What is this all about?

This is the harsh reality, I am watching my 24-year-old sister die in the most painful and prolonged way possible, and yet I am determined there will be a legacy in her experiences, and mine. I pondered why I might want to write these very personal, very distressing memories and share them with complete strangers. The answer was a mixture of cathartic release; the need to express what appears to me to be an absolutely tragic and ridiculous situation. But I also know that others will have experienced this before, I know because I live close to those people every day, after all, I live in a hospice.

This is not merely going to be a recount of events, situations like these shake the fabric of reality, raises ponderings of life after death, survivor’s guilt, the stages of grief and more. After eight months of living this reality, I want to share the experiences I’ve had, the lessons I’ve learned, explore the practical and emotional journey and more. Like in life, I don’t plan to take a one-dimensional ‘life is shit and sad’ approach to this, I hope some moments here will make you laugh, others cry, maybe get a bit angry and take a moment, but largely the hope is to impart something helpful; after all, I’ve found that sometimes all it takes is a sentence to change a mindset. Also, be warned, I don’t shy away from profanity, so the occasional fuck, shit, and cunt might permeate these chapters, as they have this entire year.

Loving Someone Terminal

You always know it’s coming. There’s a two-year age gap between my sister Sophie and I, and I was four when she was diagnosed with Cystic Fibrosis. It’s not really something I remember having explicitly explained to me, though I’m sure it was. Our mum, a divisive woman who later characterises as the abusive heroin addict and antagonist to part of this story, did, despite her faults, have a knack for gently and explicitly explaining things to me. She was probably the best example of drawing the line between explaining brutal concepts and coddling I’ve ever known. Soph and I were not wrapped in cotton wool, but it was no more real to me that Sophie was going to die young than was the metaphorical bus that could hit anyone at any minute. In short, though I was aware that Sophie’s life expectancy was shorter than mine, it never featured front and centre in my mind.

Yet, it can’t, by nature, stay that way forever. Nothing lasts forever, but everything comes to a close much sooner when you love someone terminal.

““How lucky I am to have something that makes saying goodbye so hard.” — A.A. Milne”

Our mother, however, was determined to drum into Sophie that she needed to live, by that I think she meant to prioritise happiness. It mostly became obvious when she spoke to us about our futures, planning for our careers and prospects. Soph and I came from a mother who gave birth to me when she was 17, and Sophie then at 19. This later translated to our mother having ambitions through her children, but in reality, it was through me. When she would sit us down, Sophie would be told to choose something that would be fun, make her happy, something not too strenuous. I, however, was to hit the books, aim high and earn large. This is not the place I’ll unpack this or question whether what she did was right — I do, however, know the impact that had on both of us growing up, in our teens and the brief pinch of adulthood that my sister and I have shared but I also have never, after all, been a teenage mum living in social housing with four year old and a newly terminally-diagnosed two-year-old.

It wasn’t really until I was about 20 that my sister’s mortality hit me, harder than that tonne of bricks everyone is always going on about.

It strikes me that this, now at 26, is not the first time I’ve felt like I’ve been watching her die, we had what I call a “dry run” between 2016 and 2018, Sophie’s cystic fibrosis (CF) deteriorated rapidly between these years and she, in effect, lived at King’s College Hospital in London. I always wonder if people believe me when I tell them when she had her double lung transplant, mostly because it was my birthday, April 11th 2018. What were the odds? The number of times I’ve thought to myself ‘you couldn’t write this shit.’ Yet, we were living it. Sophie’s new life was now inextricably tied to the day I celebrate when I was born, her life and mine entangled in a way which defied odds — at least to me anyway.

The Apprehension of Pre-Diagnosis — and the Guilty Bastard Called Hindsight

It’s probably best that I don’t go on a seventy-page rant on COVID, or how unfair it seemed that Soph had about a year’s worth of recovery before the pandemic kicked in and effectively took up another two years. It’s a rant of low-hanging fruit that I welcome your imaginations to do for me. Of course, in October 2021, when I was on the phone with my uncle updating him on why Sophie had gone into hospital, just before my apprehensive covid-restricted flight to Munich, I had no idea how heavily that conversation would weigh on me later. Soph was admitted, as post-transplant patients often are after her antibodies appeared a little higher than usual after what appeared to be a bit of a cold — not really anything unusual.

I wonder how often people have been told that the thing that would eventually kill them wasn’t anything unusual.

It would be months, months before the official diagnosis. Not without treatment, not without a painful variety of extreme immunosuppressant treatments, treatments that were really all experimental and Harefield Hospital were the only ones who would even consider doing them. Any other hospital and the prognosis would have been much grimmer much sooner. Up until mid-January we at least lived in hope.

The Anti-Doomsday Mentality

I think growing up with someone you love being regularly admitted into hospital, having regular life-threatening procedures, arterial lines, ECMO, transplants and more along with the threat of the inevitable rejection that all transplant patients live hanging over their heads, that it becomes a coping strategy not to, perhaps, react to these things quite so strongly as others might expect. This is the bitch of hindsight and the paradox of the anti-doomsday mentality. Though we were facing the threat that Sophie could die, it was a slow process of elimination when it came to treatments, each one slowly notched off as ineffective. Finally, the only thing that was left was radiotherapy. That was when the nerves set in. Frustrating too, I couldn’t even visit her at the hospital due to COVID restrictions and instead distracted myself with my newfound singleness and that dating app called Tinder.

I was distracted. That’s how it feels in hindsight and hindsight tells me I should have taken it all much more seriously, fought the hospital harder to see her, so we could make some more memories together. My life, it felt, was falling apart around me. I’d found out my husband had *tried* cheating on me, amongst other things, so after nine years together, now we were splitting up. We had a house together, dogs, a life and at the time we’d been planning a baby — however misguided that now feels. I parked those feelings and found myself in London, staying in Sophie’s house-share room, minus her. I was surrounded by her every day, but she was locked away in a hospital room waiting to be told whether she could come out for Christmas following her radiotherapy. I had two tinder dates, and it was the second one where I ended up in a club for the first time since the pandemic kicked off, and found out two days later I’d contracted COVID. I missed my sister’s final Christmas for the sake of some random guy in some shithole club.

There is a balance to strike between ‘everything is going to be alright’ and ‘everything is going to shit’, I erred on the side of the former, reducing my stress and anxiety in the form of a mantra which told me how unlikely it was that the worst could happen. And I was wrong.

For a while after the diagnosis, the guilt was insane, and I felt like a horrible person and a horrible sister. That might seem extreme except that we don’t have parents in the typical sense, so when anything happens to Sophie it’s up to me to step in. The thing is, chances are, I could have been right. When I was explaining that Sophie was having radiotherapy, it didn’t feel real that, if it didn’t work, she would die. Because she could have lived and, in my head, she needed to live.

I wasn’t a terrible person for accidentally catching COVID (however misguided going into the club in central London was), or for missing my sister’s final Christmas. She applauded me for the first time in my life since I was 16 actually going out and being a bit crazy. Yet, to me, it was precious memories I’d never get to live and were now lost forever.

Overcoming Pre-Diagnosis Hindsight

It’s not easy being kind to yourself. That’s not a mantra I came up with myself, but instead something someone very close to me repeated to me over and over again, whenever he felt I needed to hear it.

“Be kind to yourself”

I’ll be honest, without the external validation that I wasn’t somehow a terrible person who failed her sister, and didn’t fight harder, worry more, or somehow cure her of the thing killing her, I’d probably still have guilt eating away at me. The smallest things can gnaw at you if you dwell on them too much, but that doesn’t mean it should or that you should let it or even that you remotely deserve it. Sometimes it can be a lesson to be learned, but blaming past you on choices you made without malice isn’t constructive and serves no higher purpose than self-flagellation that, with time, runs the risk of transforming into a state of continuous self-pity — which is also not constructive. It’s important not to prescribe yourself more pain than has already been dished out, if for reasons only not to dwell on it during the last months and weeks you have left with the person you love, but also because things can and will be hard enough without it. Learn from hindsight, but don’t dwell on it.

For All the Good it Will Do

I had many months, and then the years preceding to ponder between October 2021 and January 2022, many actions to think and feelings to unpack. Yet, despite all the treatments and time it took, I was disarmed entirely the day Soph and I realised there was no going back.

But that is for next time.

…