Courtesy of TheTimes.com | Photos by JUDE EDGINTON and GETTY Images | Originally published 02.10.2018 | Published 03.06.2018
When film executive Clare Wise was diagnosed with breast cancer, she started a blog. Her brother, the actor Greg Wise, took it over when she became too weak to write and he moved in to look after her. The result is a remarkable account of illness, loss and the power of sibling love.
September 6, 2015
Like Jack Nicholson in The Shining, the cancer is back. Can you believe it?
I really thought I had passed cancer with flying colours … Well, almost. Apart from the toxic poisoning and losing a quarter of my breast, I really thought I had done it well and stylishly. As if I knew …
It was a Tuesday, at 10.30am. I saw my surgeon, Jo. I was alone. Absolutely sure that a recent CT scan wouldn’t have shown anything. I should have twigged that something was up because there were at least three other specialists and nurses in the room. “There’s no easy way to tell you this, Clare. You have incurable bone cancer and the reason you can’t move your right arm is that the humerus is fractured.”
Bugger. Bugger. Bugger. Rather stupidly (remember from the first diagnosis I am a cancer moron): “Can I still go on holiday on Thursday? On a boat?”
“Not a good idea, because the tumours (yes, many of them) cause your bones to fracture and a boat isn’t very stable, is it?” Ah, no.
So once again I had to call Greg and tell him to drop everything because I had cancer.
September 20, 2015
Back in July, I was in so much pain the consultants thought I had fractured my spine. Then they worried I had injured the spinal cord, so once again I went for another emergency MRI. Luckily, there was neither a fracture nor a spinal-cord compression, but a few of the tumours in the spine and pelvis were causing problems on other nerves. It was decided that I should have another big dose of radiation at the bottom of my spine. But of course it was a weekend, and that would have to wait for the following week. Until then, I was forced into bed rest and large doses of painkillers.
Once again, our little section of the ward became party central, thanks to lovely staff, Em [Greg’s wife, Emma Thompson], and my fellow patients. The staff were all very respectful of Em until the moment I was discharged, and then they all wanted selfies.
By mid-July I was home again, almost mobile, and the team decided that this was the moment for me to get palliative care and to start using the hospice … Deep breath. Very deep breath. Yes, a hospice. From now on it will be called Club Med (suggested by my friend Franck).
October 20, 2015
I had to ask for a prognosis. Clearly, this is an inexact science and I am only a few months into treatment, which, I understand, may lose its efficacy as the body gets used to the chemo (what a weird thought). Rather cheerfully, the oncologist said, “A couple of years.” Blimey.
That’s obviously an average, because some people live longer or shorter than that. Greg reminded me that the consultation was good news in the circumstances, even if all I heard was that I would be dead in two years. He remembers word for word a bad review he got for a play at the Edinburgh Fringe 25 years ago. He can’t remember any of the positive reviews.
I am not going to dwell on the bad, but concentrate on the good. If the current chemo stops working, they have other chemo options and endocrine treatment (whatever that is – I think it may be hormone therapy, in which case I may turn into Bruce Jenner). I am fired up to beat the average and be here to irritate family and friends for longer than two years.
Still, my heart did stop, but I didn’t cry. I am only human, after all.
November 23, 2015
I am now in a regular cycle of two weeks’ oral chemo and a week off, and am about to start my eighth round.
I had a bit of a bad week just before my 51st birthday. I dream of being independent for as long as I can. This includes financial independence. My gorgeous family have been keeping me afloat – as Greg says, it will all come out in the wash (meaning “the will”). But I have a pension plan that it seems likely I may not live to be able to cash in. It seems crazy to me that this is my hard-earned money but, according to the HMRC website, I can’t get it unless I promise to die within 12 months.
So I trooped off to see a financial adviser to see if there was any way round this. It was a most depressing 90 minutes; worse than my prognosis. He meant well, but spent 45 minutes telling me in great detail about his wife who had died of the same cancer. (Why do people do that? If I bought a yellow car, no one would tell me about their experiences with a yellow car. But for some reason, if you have cancer, some people want to tell you about their horrible and always fatal experiences.) After the uplifting story about her death, he then said the only way I could get my money would be to get my oncologist to write, saying I had less than 12 months to live. When I objected (I do not want to see that in writing and, anyway, I don’t believe it applies to me), he said, “My wife would have done that.” As you can imagine, I was screaming at the top of my lungs (internally) and left there feeling broken and depressed. He offered to write to Greg, so that he could make the choice for me. For God’s sake, I am a well-educated woman who can make decisions for herself. He also introduced me to a lawyer who would do my will. It just got more and more cheery.
June 19, 2016
Apologies, everyone, for the lack of postings. In late February I found out that the cancer had spread to my liver and so was taken off the chemo. My oncologist suggested I go on a clinical drug trial, which I did for the past three and a half months. Although the idea was exciting in that it combined three different drugs that could cut off the new cancers from growing further, the truth was that the drugs were way too strong for me and I have been pretty poorly. I also hated being a lab rat.
I am now back with the NHS and on an endocrine treatment, and when I have a little more energy I will post more. Every day I rally a wee bit, but it’s very slow progress.
I apologise if I haven’t replied to your texts, emails, etc, but I just haven’t had any energy.
July 20, 2016
Sorry not to have been posting recently, but I’ve been a wee bit poorly due to embarking on a clinical drug trial, which, unfortunately, seems to have made me worse, rather than better.
I stopped it just over a month ago and am hoping that the Big Bad Boy drugs are now coming out of my system.
I also realise that I owe a lot of emails and Facebook messages, let alone return phone calls, SMS, pigeon post, etc. I am sorry that I just haven’t been able to do this recently.
Greg is going to update the blog weekly.
Unless you hear differently, I’m fine.
July 28, 2016
Oops. I got Clare absolutely stoned this morning. My bad. We had been at Club Med yesterday, and the lovely Adrian had prescribed upping some meds that she’s on, and introducing others to help with bone pain. He’d typed out a protocol for me to follow, so, in my defence, I was just “following orders” … Suffice to say, we did the morning pill-popping first thing and, by mid-morning, she was giving Timothy Leary a run for his money. All good to find out, though – at what point pain control becomes tripping.
So she’s had a very relaxed day today. Not much to report.
August 8, 2016
For those of you who don’t know, Gaviscon is a liquid relief for indigestion, available over the counter at a pharmacy; methadone is, according to the internet, “a powerful synthetic analgesic drug which is similar to morphine in its effects but less sedative and is used as a substitute drug in the treatment of morphine and heroin addiction”. Not a lot of crossover there, then. Apart from on Clare’s bedside table: Gaviscon right next to her (because she finds it soothes her tummy), and the methadone on the far side, the bottle in a mug with a 5ml syringe to administer the correct dose. A couple of mornings ago, I wandered in at about 10am to check on her and discovered, once again, Timothy Leary’s little friend – she’d had a bit of a tummy ache, when half asleep, and for some reason had overreached …
The methadone is now in another room.
August 12, 2016
Big day today. We had the occupational therapist, Nicola, here in the morning, helping me to work through which bits of kit would be useful now for Clare. And this is why I keep banging on about why we should all gladly pay our taxes (for those of you who don’t know, I made a documentary for British TV at the start of 2016 about tax avoidance/evasion). Nicola left us just before noon and, by 8pm, we had delivered to our door: a wheelchair thing that has a hole in it, so you can wheel it above the loo, and also it’s waterproof, so is a shower chair to boot; and in a box, to be opened in the morning, an electric bath-seat thing, which lives in the bath, raises up so you can sit on it and then be gently lowered into the water, with a back rest that you can tip, allowing you to lie in the bath totally supported. I will give it a test drive tomorrow and report back …
August 15, 2016
Using the commode/wheelchair thing, with a couple of towels on the seat to make it a bit softer, we made our gentle way to the shower. And a resounding success. Clare, bless her, totally unfazed by her brother in his underpants (and not even posh Marks & Spencer ones – these, I think, 3 for £5 at Sainsbury’s), washing her hair, helping soap down and rinse off. A quick dash back to the bedroom to change the bottom sheet and lay out towels, before processing back and drying, moisturising and donning new pyjamas. Huge relief, followed by huge amounts of towel washing and drying – I think we used every bath towel in north London.
By 9pm, a hospital bed had been delivered, so I will try to set it up tomorrow. Will manoeuvre Clare onto her sofa in the living room, and then take apart her old bed and put together this new “whistles and bells” one. I am sure it’ll make life so much easier and help with pain, because it tips and folds in various places, has an air-filled mattress and raises up to make it easier to get out. Hope I can follow the assembly instructions – I’m not very patient with manual-reading; I’ll probably build it upside down, so Clare gets regally tipped onto the carpet.
August 22, 2016
What is a “water stripe”? This was requested by Clare at some point in the wee small hours of last night. She had recently had enormous amounts of pain meds exploded into her system, and was pretty stoned. I had recently been dragged out of deep sleep to facilitate whatever it was she needed. And we found ourselves at an impasse. A water stripe … a water stripe … Aaaah, of course: a straw. Clare drinks her water out of the glass with a stripy straw. We got there in the end.
August 25, 2016
A better night last night. A calmer Clare and a sharper brother – I knew exactly what was meant at around 4am when Clare asked for “fat-bottomed water” – sparkling water, natch.
The hospital staff were respectful of Em until I was discharged, and then they all wanted selfies
Busy morning: my weekly drug inventory, sorting new meds to be prescribed; finally washing the shorts I have been wearing nonstop for a month (a better option than the two others I was toying with: either boiling them up to make soup, or ceremoniously throwing them on a pyre in the back garden). Endless emails, both mine and Clare’s; shouting at a poor girl from Visa (actually, not shouting, but being “disappointed”, which is much scarier); fielding dozens of phone calls. Bless all of you who read a recent blog about me not having anyone to talk to during the days – I was inundated with calls. But you misunderstand me. I wasn’t looking for pity; I don’t like talking. Just ask the wife.
August 31, 2016
Metoclopramide. OxyNorm. Oxycontin. Duloxetine. Ranitidine. Dexamethasone …
Who came up with these polysyllabic names? (Chemists, I suppose.) How are we mere mortals supposed to remember them, what dose, and what they’re for? Luckily, I have a crib sheet with doses, and every packet is written on, by me, in big red letters – “anti-nausea”, “anti-anxiety”, “stomach-protector”, etc.
Some time ago, Clare and I started calling various of the meds by nicknames – thus Effentora (a crazy painkiller in pill form, dissolving in the mouth, acting like an injection – almost instantaneous relief) became “Nora Ephron” (screenwriter of When Harry Met Sally and You’ve Got Mail, and who we both thought spelt her name Effron – hence our terribly witty gag). So our shorthand when in pain would be asking for a “Nora”. If only in a little pain, I’d halve the pill – that was a “Zac”. (Zac Efron – young heart-throb actor of High School Musical, etc. God, we’re funny.)
This worked well until moments of delirium, when we’d both get terribly confused by our shorthand. So now it’s Effentora, pure and simple.
This is a pill that you only really need when you’re in great pain. So, naturally, getting the pill out of its covering shouldn’t be easy in any way. It is one of the most difficult endeavours I’ve ever undertaken. No “blister pack” for this puppy – oh no, that would be too straightforward: a hard plastic carapace with an incredibly sticky foil-backed covering that I have to prise apart with tweezers, often crumbling the delicate pill in the process.
Lorazepam, an anti-anxiety pill, was always small, oblong and blue. Hence known by the two of us as a “bluey”. Until a recent prescription, when it appeared in round and white form – exactly like Effentora. At night, I put a little bowl on Clare’s over-bed table with some halved Effentoras (“Zacs”), next to which lies a blister strip of lorazepam, to which is affixed a sticky label with a huge black “L” written on it: just so she doesn’t get confused in the night between the two meds that she can self-prescribe. Now, though, the new prescription of lorazepam is back to the small, blue, oblong pills again … Even I’m confused.
Our glorious nurse, Shebo, came over and we have worked on little achievable goals – especially being able to stand with ease. It’s all about Little Victories: getting out of bed and into the wheelchair; managing to take the plethora of polysyllabic pills without choking; successful teeth-brushing. All we have now – all any of us has ever had, if truth be told – are the Little Victories.
September 2, 2016
My classmate at drama school, and flatmate for those three years, Ash, is now a vicar. A couple of weeks ago, when he came to see me for the evening, he gave me a useful piece of advice.
The dying person is the Centre. The First Circle around that, the close family. Next Circle, close friends. Then outwards, circle by circle to friends, people you’d be happy to have a pint with, people you’d send a Christmas card to, and outwards to the world at large.
And here’s the advice: you are allowed to throw shit outwards, but not inwards. The person at the centre can throw as much shit as their energy allows – can toss it to the outer circles if they’re able. Family can hurl excrement at friends, but none of us can throw shit inwards: friends not at close friends, close friends not at the family. And, above all, never at the Centre.
I liked that analogy. And I liked that a vicar used the word shit.
I raise this because I got a bit of shit thrown at me this morning from the Centre. We had just had a difficult time getting from the commode/wheelchair back into bed. Her legs buckled and I’d had to try to lift Clare a little to get her onto the mattress, causing extreme discomfort and anxiety. I tried to apologise (not choosing the right moment, of course – just too soon after the trauma) and I got back, “I’m in pain!” “I understand,” I replied. “NO, YOU DON’T!”
And, of course, I don’t. I cannot in any way comprehend. I am not even in the neighbourhood, not even in the street, let alone with her in her house of pain. And that is just the pain side of things – along with that come the anxiety, fear, rage, frustration, helplessness …
We managed to calm down. She managed to rest. And then to discuss, briefly, what had happened between the two of us. I said I was trying as hard as I could. And she said that she was, too.
We are both trying. We are both human. We are in very, very different places of strength and health, but both occupying the same physical space, trying to navigate the situation with as much grace, love and humour as possible.
And sometimes it gets messy, but that is allowed, and we are allowed to get frustrated. We are allowed to get angry. But she is the only one of our pairing who is allowed to throw shit.
And that is as it should be.
September 4, 2016
There’s an old joke: why doesn’t an actor look out of the window in the morning? Because then he’ll have nothing to do in the afternoon.
Doesn’t apply to me, though. I think I work harder when I’m “resting” than I do when I’m on set. Maybe not “work”, but I’m constantly engaged with a stream of tasks. This period of time is purely about being available – ready to spring into action when the bell goes, or gently wander into Clare’s bedroom every hour or so to check that all is well. It is about waiting. In Clare’s flat. And I’m finding this stasis really hard.
I wiped Clare’s face. I held her hand. I kissed her forehead. I told her I loved her
Clare is finding it hard, too. She needs to be doing. When gainfully employed, she would always be the first in the office and the last out, often working weekends as well. Both of us playing out what our parents instilled in us – the work ethic. I think our dad took it further, though: a phlegmatic northern man, who rose from a working-class family to become a professor. His solution to any problem (even his advice to me, when heartbroken at 18): “Get your head down” – knuckling down and working hard will solve everything.
Of course, this search for approval-by-doing is just nonsense. We are loved for who we are, not what we do. I think Clare knows this now. But I think that it has taken this disease for her to really understand that. I hope she knows – the incredible amount of love that is all around her, both physically and in the ether via all of you is just too gargantuan to ignore.
September 6, 2016
Clare is phenomenally frustrated. She feels claustrophobic as a result of being out of control. She panics about being dehydrated (even after being told that the meds she’s on don’t dehydrate; only cause her mouth to feel dry because they stop saliva being produced). She panics about the idea of making it to the loo by herself at night, and then getting stuck there.
If she were to have a urinary catheter fitted, the “upside” would be potentially more energy to spend on something else – like sitting on the sofa and chatting with friends.
Clare asked, if we go the catheter route, are we improving?
September 7, 2016
In a surreal mirror-image way, I’m experiencing what happened when our daughter was born. At first, all we needed were nappies. Then we needed a car seat, a baby carrier, a sling, a bath, bottles, a cot, a high chair … The extreme amount of kit needed for one tiny person was mind-boggling. And Clare and I are now facing a similar thing, but from a much darker angle – new pieces of kit turning up on a regular basis as she is “outgrowing” what we had before: the hospital bed replacing the inflatable pillow-raiser that was on her old bed; the commode/wheelchair replacing the wheeled Zimmer frame; a plastic catheter tube replacing the need to physically go to the bathroom on the commode/wheelchair …
September 8, 2016
We had a Good Day. Clare’s clock turned up and is hanging prominently on the wall by the bed: so she knows time, day, date, month. She’s sporting a new, roomy cotton pyjama top. She has had a good deal of time present and focused. She’s had a list made. And I have been thrown a potential lifeline in the form of a complete care package. A part of me wanted to shrug off any help offered, but I know that I am only a mammal. Not a superhero. I’ve no cape. I’m a brother trying to do the best for his sister. And really, at the end of the day, what do I know about palliative care?
September 9, 2016
Some years ago, a wonderful American friend of mine, James, was working with an outfit called the Heffter Research Institute, studying the help that LSD can give to the terminally ill – specifically in the alleviation of fear and anxiety. I’m just gently wondering, now that it’s all getting a bit real for Clare, whether I shouldn’t just go down to Soho and try to score some serious hallucinogenics for her. Just a thought. If the reality of the situation is untenable, thus being denied, why not create an alternative reality?
Like the Woody Allen quote (or something like it, anyway), “I don’t mind the idea of death. I just don’t want to be there when it happens.”
He may have a point.
September 10, 2016
Compassion fatigue. Noun: “Indifference to charitable appeals on behalf of suffering people, experienced as a result of the frequency or number of such appeals.”
That’s what I always thought it was. But did you know that there’s a Compassion Fatigue Awareness Project – and nothing to do with the above indifference?
This is what they say on their website: “Caring too much can hurt. When caregivers focus on others without practising self-care, destructive behaviours can surface. Apathy, isolation, bottled-up emotions and substance abuse head a long list of symptoms associated with the secondary traumatic stress disorder now labelled: compassion fatigue.”
Well, I’ve happily ticked off all of their destructive behaviours. Especially the substance abuse. But then I was an abuser before I started being a full-time carer, so maybe I’m just a drunk and should ignore that as a pointer …
That said, it’s comforting to know that I am exhibiting signs of an accepted secondary traumatic stress disorder, and not just being a grumpy old arse.
September 12, 2016
I finally confronted Clare this morning with what she actually wants from her days. What those in the know call her goals.
It is a question of a trade-off between sedation and pain. The drugs ease the pain but, being a blunt instrument, they heavily sedate. Alongside this is the “burden” of her illness bringing prolonged sleeping. Clare is most available, clear and present between three and five. In the morning. Not great. So is there a way of flipping this to 3-5pm? Emails banged off to various doctors. Phone calls to the palliative nurse. And I await any form of guidance. Maybe I will simply be told what Clare has been repeatedly told by the doctor: that there will only be “windows”, which have to be seized. And we will never be able to plan when they will come.
Clare is finding it hard to sanction anyone other than her brother being here – she said to a visitor that she is aware that I need time away. She hasn’t said that to me, though. Maybe she just can’t start that conversation, because she’s scared where it might go. So I have to start making unilateral decisions, which seems unfair, because she is desperate for a sense of control – at the same time unwilling to participate in the conversation. A dichotomy that I am unable to solve.
I’m being hard on her. I cannot even begin to imagine what she is trying to process in her head. And, once again, I know I am bringing my sheet music to someone else’s recital, and have to keep repeating to myself: IT’S HER GIG. I am merely her roadie.
September 14, 2016
Clare died at 8.10am yesterday, September 13.
Ironically, or perhaps totally appropriately, within minutes of me posting a blog about the “sameness of days” and that I was going to have to make a unilateral decision, Clare was busy making other plans.
She was not her usual self in the early evening – she couldn’t get comfortable, kept ringing the bell and getting me to rearrange her pillows, change the angle of the bed base, try to move her on the mattress. We had exhausted the possibility of more opiates, so I gave her an Effentora but she was still bell-ringing for some time after.
At 10.30, I checked on her. She was asleep. I put myself to bed, hoping for as calm a night as possible.
I woke at 1am hearing noises, and went to Clare’s room. She was in some distress. I tried to get her to drink, but she was unable. I went to phone the night nurse, who said she would be over as soon as possible.
Fifteen or so minutes later, Heather and Emma, the night nurses, arrived. Heather concocted the sedative and painkillers on offer, and gave Clare an injection. Within a few minutes, she was calm and her eyes closed. I left her at about 3am, calmly sleeping.
By 7am or so, she was back to being wide-eyed.
8am now. Back at the bedside. I wiped Clare’s face. I held her hand. I kissed her forehead. I told her I loved her. I said how unbelievable we had both been, but I said it was all just getting too f***ed up now. I told her that she didn’t have to worry, that everything was sorted. And I told her that she could go now, if she wanted to.
I kept her hand in mine, and she died about a minute later.
As Clare didn’t talk to any of us about funeral plans, or anything, we are having to work out what is most appropriate for this most unconventional girl.
The feeling is that we won’t have a funeral. Instead, we will have a party on her birthday. Start with an “open mic” so whoever can say whatever they want. And then major dancing and drinking. For those of you who didn’t know (can there be anyone?), Clare was a HUGE fan of Eighties disco. So that’s what we’ll have.
Writing this blog has reinforced a few things that maybe all the noise and endless movement of my life has made me forget.
Live as honestly with yourself as possible; try to find a way to love and be loved; keep asking questions; keep trying to find answers; but know when to stop.
© Clare and Greg Wise 2018. Extracted from Not That Kind of Love, to be published by Quercus on February 22 at £16.99