My honour and my privilege

Part one of part two.

Part two was meant to be about the present, which is tricky to write about because once you’ve written about it, the bloody thing is in the past. Philosophical questions about what constitutes “the now” aside this piece is three stories of the relative present between two fixed dates. The 15th of January to the 10th of March. That is the day before dad died to the day we spread dad’s ashes. 

The day before dad died we as a family are all at St Gemma’s – Mimi is my dad’s nurse for today and she is taking care of him. Dad is asleep now and has been more or less since he arrived at St Gemma’s and they asked him what he wanted and he said “to be asleep and not be throwing up blood” That one wish was their command. Before Mimi gave him the drugs he’d need to sleep, and that would stop him throwing up, she said to my dad “this will make you very drowsy and you might not be able to wake up” he understood what that meant and gave her a nod. I said, or tried to say “I love you” the words didn’t come out, my vocal chords crushed by sorrow as if it was a hand curled around my throat and so we just looked at each other. I open the journaling app, the January 9th entry is titled “The next few months?” Ha. Ha. Ha.

Anyway, this is where the story gets funny. Bear with me. Honestly, it’s not that funny, but it brings a smile to my face when I think of it. Dad sleeps, there are no machines that go ping, no blood pressure monitor to alarm, the motorised syringes  pushing the drugs into his body are in boxes, hidden beneath his bed sheets. Mimi is checking they are working properly and is very gently and very discreetly making sure that dad’s pyjamas are comfortable. He looks like he is just napping in bed. Comfortable.  A marked contrast to the last two months in hospital where dignity and privacy are at odds with expedient drug administration and “get you home care”. Mimi looks at the one pillow he has and starts to gather some more from the shelf next to the bed, but I stop her – he hates more than one pillow. “Mhmm” she says and smiles, from that point on no one else who comes into his room needs to be told this – Mimi has passed that request on, the extra pillows stay untouched. Dad’s needs, whatever they might be are paramount and the staff are there to meet them. Later, I am in the corridor looking at a coffee vending machine confused and tired, me not the coffee machine. It needs a pound coin, I do not have a pound coin, a nurse passing by doesn’t ask me who I am, she doesn’t ask what I want, she looks at my face and I think she can tell, just by looking and puts some sort of staff token key into the machine and says “that’ll work now” – the invisible, quiet and thoughtful care here doesn’t just extend to the patient.

I go back to the room, Dad’s brother and sister are there too. Mimi is still there when a consultant arrives with a nurse in a very shiny white tabard. They ask if they can sit, and I notice that Mimi has closed the door. I know what’s coming here, I’ve been preparing for this moment for a while now, we all already know so thankfully it is not a shock. The Doctor sits next to me, and the nurse sits next to my aunt, the doctor asks who we all are, there is some small talk about how far my aunty Linda has travelled to be here and about dogs, not in a weird beating about the bush way, but in a reassuring, I’d like to know you a bit way. Then she turns to the star attraction and says, “I know you know this, but we just want to make sure you are ready” she took a beat “prepared”. I said we were “prepared, but not ready” and to my shame instantly thought, that would make a good line for the blog post I write about this later. She continued, “we’ve had some tests back and, well, there’s not much point telling you much about them unless you want to know, they are all bad”. 

We knew he was going to die soon. The doctor couldn’t tell us when. It’s odd that when conversations about cancer happen the question you want the answer to goes unanswered. “what we really want to know is the timeline, to be honest?” I asked one doctor at St James “yes, that’s an interesting question” he replied. But here at St Gemma’s they know your loved one is either going home for a bit or, well, not.  

The consultant said that for the next few days it would be best if the people who wanted to be with him when he died stayed close. There was some more talk and a few questions back and forth. There were some tears.  All in all, it was a very intense and heart-breaking conversation. No “heroic measures” he didn’t want that – that was the very last thing he wanted, he wanted to die peacefully in his sleep with no trauma or drama or as little as is possible in that situation. He didn’t want me to be upset. He was worried about me. In his death he wanted me to feel ok.

I’m not sure how long that conversation lasted, it was probably about 15 minutes. The Doctor asked if we wanted a drink and we all said, “a cup of tea” You can insert your own cultural significance of the British and tea in a trauma section here. I’m getting to the funny bit, I promise. The doctor goes off to get us some tea. 

You know you are in an end-of-life situation when A) the doctor goes to not only make the tea and B) when she comes back with it the tea is in a pot with mugs and little biscuits in packets and not in a cardboard cup with a logo on the side. The shiny white tabard nurse remained with us and made some small talk, Mimi had gone without any of us noticing. 

The room is returning from impromptu meeting space to hospital room, and we stand around the tea deciding on biscuits. My aunt, conscious of how incredibly young white tabard nurse is, says to her “I’m sorry you had to sit through that very emotional event, how long have you been working here?” The young woman says “I’m in training” my aunt says “Oh! My! Even more harrowing for you how terrible!” The nurse looks like a rabbit caught in the headlights at this point and I feel dreadfully sorry for her because who really knows what to say or do here? Especially when you are young and in training? 

This is one of those situations where there are no right answers just things that happen and our reactions to them and we’ll work out later what it means. I decide to try and break the silence with a nice easy one “how long have you been training?” I say with as a cheery a tone as I can muster and a smile. She replies, “it’s my first day”. Involuntarily, I smile. Sympathy not sarcasm you understand, what a first fucking day. 

And that is the sort of payoff you can’t write because no one would believe it was true. Trainee nurse in shiny white tabard, I’m sorry I didn’t catch your name, but if by any billions to one shot you ever read this, I hope you know we remember you and how you handled an impossible situation so brilliantly on your first day. 

Later that day at about five thirty Mimi popped her head into the room, she said “I’m just going home now.” And I replied “thank you for everything” Mimi said “it’s been my honour and my privilege to look after your dad”  I knew then he would die that night, it was the second “my” that convinced me. No one could say for sure, that’s obvious, but Mimi who had clearly seen all of this many, many times before knew it was likely and she wanted to let me know as much without saying it. I’ll be forever grateful to this more or less stranger who I hardly knew but saw working with such deep, deep compassion for my dad and us. 

In the most difficult of circumstances with so many complex and saddening memories that are very dark over a very short and sad few days, Mimi was a bright white point of light – a happy thought filled with love and compassion. I smile when I think of her because when I see her I see my dad at rest, no more pain, no ‘coffee grind’ puke, just him, quietly asleep and comfortable, covers pulled up to his neck, and his sole, ratty uncomfortable looking pillow.

Part two of part two. 

When someone dies, clearly the first question many people ask is “what do I do now?” For some that is an existential question and for others it is a deeply practical one. I know this because when my dad passed away the nurse gave me a pack of paper that was basically a load of “here’s what you do now” information. One of those things was the need to register the death at the registry office. There’s lots to do after death, I found it weirdly very helpful – I need to do all this stuff with legal that and bank account this. It allowed me to distract myself while still being involved sort of thing. I’m sure some people find it brutally difficult, but I enjoyed it. Enjoyed is the wrong word there, but I’m not sure there is a word to adequately convey both enjoying and not enjoying something all at the same time. Maybe the Germans have a word for it?

To book an appointment to register a death you need to contact the registry office. In Leeds this requires that you fill in a webform, a webform that looks like it was designed in 2004. Sadly, it was down when I tried to log on so I was forced to call, after a while on hold being told that the registry office in Leeds does not tolerate rude or aggressive behaviour, a very helpful person answered and asked me what the issue was – I told her and she said not to worry that she could book an appointment for me. Evidently, she was opening the same webform I was attempting to use because she went quiet and told me the form was down and she could only ask me to wait until later. In my head I said “well, he’s dead so I have plenty of time” but of course I didn’t say that because that would be rude, aggressive even.  It was 9am and my gut instinct is that the systems manager didn’t get in until 9:30 because when I tried again 30 minutes later the error was gone. Someone had reset the AWS instance. 

The form came back to life (IRONIC WINKING AT THE READER) and I got an appointment and more warnings about being respectful toward the staff – rude and aggressive behaviour will not be tolerated! Make sure you are on time as missed appointments hurt all our feelings and so on.  I have always found both these statements very questionable metrics – where is rude and aggressive behaviour tolerated anyway? Also, maybe it’s not us maybe it’s your appointment system that demands people are free between 9-3 Monday to Friday in handy half hour slots – especially where they’ve just had a baby arrive or loved one depart. 

Here I am, then, sat in the registry office wating my turn – it’s open plan, which is, if you ask me, an odd choice given the task at hand. I sit in the “looked nice in the corporate furniture brochure” seat and it is as uncomfortable as it is ugly, but no doubt very hard wearing. A family come in looking very sad and using words that I am now becoming all too familiar with; “probate”, for example. Then a young couple arrive with a toddler and I play peek-a-boo with him for a short while. What a feeling it is to bring a smile to the face of a toddler – like, the best feeling on Earth. The poor bastard has no idea how his life is about to be flipped upside down by the very quiet new-born brother strapped to his mother’s chest. 

My appointment in late in the day, and the office is thinning out. The toddler and baby leave, the family in grief leave, everyone else leaves – my appointment time flies by, just the 45 minutes, but enough to make someone rude and possibly even aggressive I think to myself. Eventually and with a fulsome apology my person arrives to take me to a semi-open desk in the semi-open plan office – again the stickers on the desk remind me of how vitally important it is to make my appointment on time and how being aggressive is not nice. The process of getting a death certificate is swift in the grand scheme of things. The lady processing the form for me explains that there are some odd questions, but they are all legitimate and needed. I didn’t think there were any odd ones to be honest. The last bit is pretty important, it’s about proofing the document and you can tell that the staff are used to being told that everything is correct before then, when the document is printed, being told “oh, actually that’s not their real name” because she verifies everything with me four or five times and asks me if I’ve ever proofread anything before. I smile because I have proofread millions of words and all I can think of now is how many howlers I’ve missed, but no mind, the data here is correct and she clicks “Done” on the screen. The certificates pop out and she has to sign them in ink, because WHO THE FUCK KNOWS? She shuffles the newly signed certificates into a folder. The folder I learn later has lots more “what to do now” information in it. It’s been very perfunctory and professional really, the questions were easy to answer her demeanour was personable but not too personal. There was small talk about what he’d done for a living and how he’d been a Bookmaker and I had made books, “funny” I say, “yes, funny” she says. She added some more information sheets and printed a receipt and went to get some more leaflets about what to do now and came back to put them in my new ‘your person is dead folder’ a keepsake. Sort of. 

She squares it all off and I realise I’m locked in just watching her hands on the folder, she puts her glasses on the pack of papers. I look up. She looks me in the eye and says “finally, I just want to say how very sorry I am for your loss” Up to this point it’s all been very matter of fact, but this was so personal, so warm that it really brought me into the moment. The death was official, one for the books and she knew the exact time to switch modes. It only lasted a few moments, but I’m learning that it is in the small moments, when you’re off-guard, when a total stranger does something small and thoughtful that the grief will ambush you and squeeze those emotions you’ve been holding on to so hard you can’t swallow or speak. 

Part three of part two.

An ex-colleague of mine got in touch to say he’d read part one and he used a phrase I’d not heard before, but it was one that resonated so sharply with my experience: “Sympathy Fatigue”. Who knew that at some point you’d be thinking to yourself PLEASE STOP BEING NICE TO ME – it’s such a selfish feeling that brings shame and guilt with it – you can’t say to someone “please can you just stop caring about my needs”. It seems almost unkind to them, by not meeting their need to be nice with niceness you feel bad, but you start not wanting them to be nice at all WHICH IS MAD, but that, I guess, is the weird reality of life. People are nice and that’s what you want, but also in the fog of grief you don’t want them to be nice, but they are, and really that’s hard to process because every niceness is a reminder an echo.

The final part of the present is a simple story of how I brought my dad back to life for a few seconds. Again, bear with me. We spread dads’ ashes at about midday at the base of a European ash tree, I said what he’d asked me to “he did everything he wanted to and lived a happy life” and I added, ”you can’t really ask for more than that”. You can of course, you can demand more life, but cancer isn’t listening.

After, the day was spent with coffee and cake and family and a lazy afternoon in a cottage I’d rented. We were booked into a local pub/restaurant just down the road for an evening meal together too. A small affair really, just the 9 of us, but in this place, we were the biggest table of the night. A young woman served us, and we had a lovely time over food and chat for a few hours. Something my dad used to love. 

When dad went out to a restaurant He ALWAYS paid. Not in a Tony Soprano “I’m the family boss” sort of thing, more in a “I enjoy this, and I want to pay” sort of way. He’d occasionally settle the bill before anyone knew. Like, he wasn’t a millionaire, but he wasn’t poor either and I’m talking Pizza Express sort of thing and not The Savoy, but still it was his thing. Something he liked to do, just because. Small. Invisible. Kind. To the outside observer it might look selfish; the bill arrives and we’d just give the bill to dad, or the waiter would say “who’s paying” and we’d all gesture at him, but only because we knew he’d want to pay with zero fuss – no “oh go on then”. No, “it’s my turn”. He didn’t like fuss.

Something else he did was tip well, not mad like, but generously. If the server was young, they got a larger cash tip – it didn’t matter if they’d been shit, in fact, if they’d been awful, but tried, they often got an even larger tip. One time, in a Pizza Express as it happens, the young man serving us was so nervous that we’d both assumed it was his first service on his first ever day – he was shaking. He brought us the wrong food and then knocked over a drink on the table as he was serving us the right food. It was, for him I’m sure, mortifying. We both reassured the young lad that it was fine. Because, let’s be honest, it totally was. 

The bill probably came to £40 – Dad always paid in cash, always had cash, and like some 1970s gangster it was folded up in value order. I saw him put £60 maybe £80 in on the plate and we left. As dad passed the young lad he said “thank you so much” not theatrically or sarcastically, just normally. Like, I know, it’s not huge money, but it’s enough to make a small difference and dad didn’t need even to see a reaction, it wasn’t performative, he liked to, of course, he liked to see the smile, but it wasn’t essential, it was just a good thing to do if you had the means. I asked him once why he did it and he just shrugged, “they might buy something nice with it for their old dad” he said.

Our family meal over, I ask for the bill, I notice that service isn’t included. It was the sort of place where you go to the till to pay and the young woman who’d looked after us was there, I paid the bill, with my card, I’m not a 1970s gangster after all. I dropped a healthy cash tip on the receipt holder thing and said to her “thank you so much” Her eyes were, for a moment on the cash tip, she looked up at me and said “are you sure??” And I said, yes and thanked her again. Her face lit up, eyes glossy and smile beaming. For that brief second my dad was back in the room with me enjoying the moment and I thought of him and that made me happy. After we got back to our cottage my uncle said, he’d noticed that service wasn’t included and so he’d given the woman who served us some cash as we left…My dad would have loved that. 

To Mimi, white tabard nurse, coffee machine nurse, registry office lady, waitress at The Gamekeepers Inn. You’ve no idea how much your acts of service and kindness in ways large and small, visible and invisible made a difference to our individual and collective – small and very large moments of grief. Thank you.

Dad had lung cancer, bone cancer, liver cancer and some other stuff, he died in January 2024 and we scattered his ashes in March 2024.