Clare Wise


7 Heavens, 7 Deadly Sins, 7 days in the week, 7 colours in the rainbow, 7 Oceans, 7 Continents, 7 layers of skin, ocean waves roll in 7s, 7 holes in your head, 7 Dwarfs…

…and 7 of us on Friday afternoon to say goodbye to Clare.

I cut a huge bunch of lavender from her garden in the morning in glorious sunshine and tied it up with the drawstring of my shorts. The shorts that I had worn non-stop for all these past weeks. They came with me to the Crematorium.

The 7 of us (and Tindy who is still in Vietnam) had collectively designed the send-off. Clare is not your Oak-Coffin-With-Brass-Handles sort of girl, so we chose a Disco Glitter-Ball coffin – seemed totally appropriate for our 80s Disco Goddess. She was dressed in a beautiful red sari, with gorgeous high-heels, covered in bangles, wearing her finest shades and scented with her favourite Chanel No 5 perfume.

Our Funeral Director was totally unfazed by the request for four of the girls to carry the coffin – Philippa, Rose, Em and Fiona, perfectly in step, bearing their friend in to the accompaniment of the Bee Gees “Night Fever”.

For the next 45 minutes we all stood around Clare, taking it in turns to speak and to make an offering to be cremated with her. I put the bunch of lavender on the coffin to start with and then my shorts. By the end we had covered the coffin with a glorious mess of offerings. So appropriate for my sister – an aesthete, surrounding herself with beautiful clean-lined pieces of twentieth century furniture and then completely engulfing them in huge piles of clutter. I can’t remember a time when I could see the surface of her dining table…

Midway through our offerings I noticed out of the corner of my eye a jolt from the Funeral Director, sitting quietly at the back of the small chapel, when Em struck a match to light an Indian incense stick she’d placed on the coffin – there’s probably a Health and Safety regulation banning naked flames in a crematorium…

By the end we had a glove-puppet penguin, sandals, an Indian wrap, “It’s a Wonderful Life” DVD, a painting of a flower by Gaia, a carrot and a copy of the play “Waiting for Godot”, photographs of Clare, all the words that had just been shared and all the wonderful words that so many of you have written to me over the last fortnight.

And a large collection of scrunched up tissues we had all been crying into.

Clare then left us to the strains of Gloria Gaynor’s “I Will Survive

My Wife (who has been to a funeral or two in her time) said this was the best ever. And, although hesitant to use a word like best when talking about a funeral, I think she was right.

Afterwards we all went off to a private space in town and made Clare extremely proud: sharing countless numbers of very fine cocktails that Gaia had invented (including a Lavender Mojito), gorgeous wines, beautiful food, wonderful stories, much sobbing and laughter, a spot of kneeling by the loo and a very professional display of alcohol-induced-passing-out.

Gaia now has four new “Rogue Aunts” who will take over the responsibilities that Aunty Bobs had assumed thus far – between them I think they pretty much cover all her idiosyncrasies…

Esther wrote to me from Antarctica saying that they had had an amazing Aurora on the day of the funeral. And this, from Emma Clarke, the next day:

img_0002Clare’s ascending in her Glitter-Ball and rainbows

Oh, and as Death is the Joke That Keeps Giving… I must pass on a conversation I had on the phone last week with Clare’s mortgage provider:

“You have to go into our nearest branch with the Death Certificate and proof that you’re her Executioner.”

“I’m sorry?”

“Her Executioner”

“Are you implying that I killed my sister? Do you mean her Executor?”


Love to all




Clare will be cremated tomorrow – Friday September 30th at 3.30pm

There will be only 7 of us there: me, Emma, Gaia and The A Team.

I am sure that you all understand that it would have been 7 or 200. Nothing in between. And I didn’t want to make an arbitrary “cut-off” point. So I hope you all feel that there is a fitting equality in this.

Funerals are such horrible things. Formal things. And Clare didn’t want formality.

We will all have a chance to meet up in November – talk, listen, share stories, tears, laughter, drink and dance up a storm.

I will write about the funeral at the weekend.

If I can ask that you find a quiet spot if you can between 3.30 and 4pm tomorrow and send a good thought out into the universe.

Love to all

Recurring Themes

Once again, The Universe is gently chiding me for bringing my sheet music to someone else’s recital. This, more than anything else over the last weeks, has been the recurring theme, and the lesson that I will take away as Homework, and have to learn. Eventually.

Don’t view another person’s choices from your perspective – judging them by the choices you have made (Goodness me – this sounds a bit Biblical, doesn’t it?)

Oddly, it is something I learned long ago in my work as an actor – not to bring personal morality to bear when playing a role. Don’t judge your character, just play them.

I know that this is a common trait in us humans: the terrible looking-down-ones-nose at others…

Married couples at cohabiting ones

Couples with kids at couples who decided not to have kids

Couples at Singletons…

Singletons, and Single Aunts in particular, are incredibly powerful beings in kids’ lives – so important to have someone in your parents’ generation who aren’t parents themselves – the “Rogue Aunt”. As an Aunt and a Godmother, Clare was a consummate professional: always remembered birthdays, always available for fun times, for trips, for holidays. And, in our set-up, Gaia’s roommate on so many of our excellent adventures. She was a powerful free-moving spirit in so many lives – both young lives, and lives lived alongside her for all those years. Not weighty, not anchored by having children of her own, but interconnected to so many children, so many families, so many friends.

And not wanting to embark on that kind of love meant that the love wasn’t at risk. All of us who have loved, and lost that way, know that the opposite of that love isn’t hate. It’s indifference (eventually – after the pain and the anger have subsided). And Clare never had to face that indifference.

Claire – the sister of my old friend, Simon, who drowned all those years ago – was a close friend of my sister as well. In a recent email, she wrote very cogently about this: She touched so many lives…she will be remembered with love – a love that will last longer perhaps than “that kind of love”

And an odd aligning of sentiments from another dear mate writing about a whole other friend of hers: It makes me think that love, real love is more about the constant friends in my life.

Who am I to judge the type of love that Clare gave? And the type that she received?

Love is love is love is love. We all give and receive it in a myriad of ways: healthy, unhealthy; successful, unsuccessful; affirming, debilitating.

Another recurring theme of these writings over the last weeks is the power of the “moment” – and the realisation that that’s all we have. A celebration of the ephemeral, I suppose.


This is on the path up from our family cottage on the west coast of Scotland. A patch of wild, rough hillside, and a walk I’ve done probably hundreds of times. But I was stopped in my tracks on the 14th February – Valentine’s Day – this year. This photo is of a piece of peeling silver birch bark; the sun at just the right angle; me approaching at just the right time from just the right direction… thinking there was gold leaf on the tree. And only a minute after I’d first seen it, it was over. I’d never seen it before. And I’ve never seen it again.

The combination of all these disparate things aligning, just for me, just for that brief moment, giving me an enormous surge of happiness, filling me with joy and wonder and then the moment ends.

Loss is an essential part of this joy and wonder – the beauty of The Ephemeral.

And by witnessing, marking and celebrating these fleeting moments, we are both celebrating their happening and mourning their loss.

So is loss as an essential part of truly being alive, truly being present?

We pass by the permanent things on our journey through life without a second glance (or, if we are able, we see them again, as if for the first time, through the eyes of our small, toddling children, and hopefully share their wonderment). I always banged on about the finite nature of things bringing us the joy of the thing – would we still enjoy eating this particular slice of cake as much if we knew that this cake was everlasting? That we could have this identical slice whenever we wanted it until the end of our days? We would soon stop eating the cake… we love it because we know it’s going to stop.

I am still letting the last weeks filter through me. They may filter through for the rest of my days. I don’t know. And if they did, that would be fine – I think this patch of time, this loss, I will carry with me always. It will find its place within me, it will permeate, fill some gaps, make me who I am.

All I know is the incredible potency of the fleeting moments that Clare and I shared over this time. And alongside this, I know, is the desire to be able to conjure up the memory of my sister as the vibrant, powerful, funny, gorgeous, able person she was before all this hit her. This last week I have been clearing through her study; going through all the papers, files, boxes – a few hours ago I pulled stuff out of an envelope and was stopped in my tracks. The wind knocked out of me. By this unbelievable beauty that is my sister:new-bobs-photoTaken by Rose, the same day as the photo recently posted of Clare with her hand over my eyes

People die. The love, the joy, the wonder does not die. The ephemeral nature of our existence creates this power, and we keep the joy of the fleeting touch within us, and carry it with us for the rest of our journey. I hope so, anyway.

And as I wrote some time ago – whatever Clare was made up of will soon go out into the universe again, to become part of something quite other, as we are just the short-term guardians of what forms us physically.

We are the embodiment of the ephemeral built of the eternal.

Love to all

Emma and Gaia

Nothing of what you have all been reading over the last months – the total immersive-care for my sister – would have been possible without the utter, unquestioning love and support of the two most incredible people in my life: my wife and daughter, Emma and Gaia.

No, that isn’t right. Not support – their equal shouldering of the burden alongside me.

Witnessing a Father and Husband absenting himself, by choice, from the family for so long, with total understanding and Grace.

I can write about this aspect of things, now that the daily care of my sister has come to an end. It did not seem right before this moment: muddying the waters in some way, opening up to view the primary dynamic in my life, running as a parallel story to this one, and necessarily “on hold”.

This “Holding Pattern” started last summer. Literally a couple of days before we were all meant to go off on a wonderful holiday to Greece – Emma, Gaia, Clare and I.

(Oh, dear – is it Clare and Me? Grammar was never my strong point… Quick story to illustrate: In my Year Off between school and University, after I had worked as the Community Service Volunteer, I applied for, and was given a scholarship by the English Speaking Union to go to Sydney Grammar School for 2 Terms. My first day there, filling out my enrolment papers, it was gently pointed out to me that I had spelt it Sydney Grammer…)

Anyway – Emma had organised a two-week cruise, just the four of us on a yacht, round some of the Greek islands – two days before we were all meant to go, Clare got the diagnosis of bone cancer. And that the treatment had to start right away.

I explained to Gaia that Clare just needed an operation on her broken arm (which was true, but only part of the story) so she wouldn’t worry, but to cut a long story short, Clare and I didn’t cruise round the Greek islands last summer…

Clare was originally diagnosed with Breast Cancer in 2013, her treatment continuing until the early months of 2014. We managed a wonderful 50th Birthday celebration for her that November (Ironically, the one who had organised it all was unable to be there – Emma was in New York, as her close friend, Mike, had just died). Within a few months, however, Clare was in pain again. For those of you who have followed this blog from its inception will know the story, but suffice to say that for many months she carried around a number of pathological fractures – all mistreated by the various professionals she visited, until the summer of 2015.

Since then it has been an almost constant stream of hospitals, clinics and procedures – the family focussed totally on Clare. And when I couldn’t be with her for whatever appointment, Emma was at her side.

By the start of this year, Clare was on oral chemotherapy, and thus not tied to regular Hospital visits. To make the most of this state of affairs, in February, Emma took her to an ayurvedic clinic in India: she stayed a fortnight, and Clare a month – a shame, in hindsight, that she didn’t write more fully about her stay there as it was such a powerful time: the day she got back to London I told her that I had never seen her looking so wonderful – beautiful, healthy, full of life. But she went to bed the next day, and never really got out of it again.

It was on this trip to India, just the two of them munching dhal and getting treatments that wonderful conversations happened: nobody else to get in the way and time to explore thoughts fully. Perhaps the most potent was Clare’s admission that she wished she “had let love into her life”. She had an extraordinary amount of love in her life – she knew that – but not that kind of love…

Clare protected herself from the hurt that she knew naturally came hand-in-hand with that kind of love. She allowed herself to love and be loved, but probably, and essentially for her, on her terms: the love of friends, her family, colleagues, Grably and me.

And our relationship, as I am sure you are all aware if you’ve been following this blog, is not your archetypical Brother/Sister one. Clare and I were brought to an incredible closeness by the reasonably tricky family dynamic we grew up in, but we went opposite ways as a result: me looking for that kind of love – Clare shunning that and going the route of self-sufficiency: with her brother on hand, of course, to do whatever “Man Things” needed doing. Probably the perfect set-up for her – someone to do the DIY without demanding a kiss afterwards…

She did, though, make demands of me – which I was always happy to honour. But having a family of my own meant their sanctioning of this arrangement – always given. Emma, and latterly Gaia, being so gracious, wise and understanding about the complex relationship that was Me and Clare.

Never more apparent than the moments after Clare’s death. Emma and Gaia at the bedside within minutes, and the start of our family-grieving. Oddly, or perhaps fittingly, the first real moment back as our family unit was the sharing of grief. An incredibly potent and positive thing for the three of us, and something that we will continue, as a family.

Emma lit scented candles and set them in the bedroom; Gaia cut flowers from the garden and put them in a vase on Clare’s over-bed table, and while we waited for Dr Miranda to come and do her paperwork, she went out and returned with pastries and coffee. She went into a food-creating frenzy for the rest of the day. Obviously well brought up, or well-versed with what to do in a time of death – we are all emotional, exhausted, our blood-sugar dives – we need feeding.

Over the next couple of hours she put together the most fantastic buffet at home, which we decimated over the remainder of the day. Practicality – that’s what is so important at these times and a true Act of Love.

And now we have to re-engage. Have to get back together as a family again. Start to repair the inevitable “Collateral Damage”. It will take time, as it has been a long time in the making. And I feel that the grieving process will be a large part of the healing.

Interesting thing, Grief. My close friend and flat-mate over the 3 years at Drama School, Simon, drowned when he was 25. I was in a play at the time at the Nottingham Playhouse – far away from any of our school-mates, far away from the city we had all shared. Very much adrift. I went to see a sort of Mystic lady in Nottingham, who told me that if I didn’t grieve I would get physical heart problems. But try as I could, grief would not come. I gave up acting, I took myself to Australia, a friend joined me a few months later and the two of us rented a car and did a 10,000km journey in 4 weeks (and of course she couldn’t drive…). Halfway through – on an endlessly straight road in the middle of the most enormous, flat, arid landscape I had ever found myself in, I started to cry… Maybe I just needed a sense of perspective. A sense of where I fit in the “Grand Scheme of Things”. I don’t know. But I grieved. Big Time.

Grief comes easier for me now, and I have found myself over the last few days, walking through Clare’s flat, carrying boxes, suddenly overcome by a vomit of tears. I wail, I stop, I continue to pack up. This will be a regular happening, I am sure.

Clare and I didn’t cry together. As far as I can remember, she only allowed herself tears in my presence once in the last weeks – and they were tears of frustration. I only cried in front of her in her last moments – my last words to her. I think that was important for her to know that I had gone beyond what I had always been – the brother facilitating her wishes; not upsetting the energy of the room; not bringing his own sheet music to her Recital.

She had carefully demarcated our relationship in this patch of time we were sharing; tried to keep it as “clean” as possible, as the true nature of what was happening was just too “messy”. She was always very organised.

I am finding myself drawn back to Clare’s flat (I am writing this there). It will be hard to break the rhythm that we have all had over these weeks – that Dad is down the road not really able to come home for more than a few minutes at a time as he’s looking after “Aunty Bobs”.

I don’t know how many of you know the family name she had: Aunty Bobs, Aunty B. And I can’t really remember how it came about – me starting to call her Bobs – a derivation, I think, of the Hungarian word for baby – baba. Maybe she was called that by some of our Hungarian relatives as a child. No idea. Anyway – from the moment that Gaia could speak, Clare was Aunty Bobs. And I always called her that as well – Dr Phil utterly confused on his first visit when I kept addressing her as Bobs, Bobsie or Aunty B.

I will save for another posting writing about the fourth member of our family – our son,  Gaia’s brother, Tindy. Aunty B was an incredibly powerful force in his life, and he in hers. Their story will be told at a later time.

This has been a bit of a ramble. My thoughts are all over the place – not so surprising, really.

To finish: Grably the Cat is in heaven at his new home at Ms Clarke’s. I have had all the medical kit taken away by Medequip. The radio is constantly playing in Clare’s bedroom – an 80s music radio station. Scented candles lit whenever I’m here. Now I have to try and disentangle myself from this place that has been my home for the last months, reconnect with my family and the wider world. It will be hard – the bungee cord keeps pulling me back: this flat, I think, representing a simplicity, a clarity-of-purpose that is now gone. The world has become large again and I have to step back into it.

And all that is left is to celebrate my glorious girls still with me, Emma and Gaia. And my other glorious girl, still with me but in a different way, Aunty B.

Love to all and profound thanks for all your words, in so many different forms, over the last days



Clare died at 8.10am yesterday, September 13th, 2016

Ironically, or perhaps totally appropriately, within minutes of me posting the previous evening’s 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 – the rhythm of the days had always been that by 7 or 8pm she would have her smoothie, take the collection of meds, and then gently slide off into a big sleep. But that evening was different: she couldn’t get comfortable, kept ringing the bell and getting me to rearrange her pillows, change the angle of the bed-base, try and move her on the mattress. We had exhausted the possibility of more Opiates, so I gave her an Effentora – usually guaranteed to knock her out – but she was still bell-ringing for some time after.

At 10.30 I checked on her. She was asleep. I gave Grably his 15th meal of the day, he took himself to the door and I let him out for the night. 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. Wide-eyed with hugely-dilated pupils. Shallow, quick panting, every breath bringing with it a forcefully vocalised “I can’t… I can’t… I can’t…” I tried to talk with her, but she could not respond. 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. When I returned to Clare, the words had changed to “Okay… okay… okay…”

Only with hindsight I realise that this was perhaps the frantic interior dialogue playing itself out.

15 or so minutes later, Heather and Emma, the Night Nurses, arrived. I had a collection of meds that had been ordered some weeks ago (when we had thought to give Clare a big sedative for her nights, but had decided against it). Heather concocted the sedative and pain-killers 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. But now totally unresponsive and immobile. Just an indistinct vocalising on every breath.

We have an extraordinary back-up. The fridge door is covered with telephone numbers for nurses, palliative care, “Twilight Nursing” (until 11pm) and the Night Nurses until 7am. But, and I have no idea how this could not have been spotted, between about 7am and 9am, there is nobody available. I called a number and was told to phone our NHS generic helpline: 111. There you get an operator, who is not medically trained. She said she had to go through a list of questions with me – was Clare bleeding?? After a pointless number of minutes of mindless questioning I was put on hold and then told I was being transferred to a nurse. Finally we managed to speak, but all she could suggest was that I call Camden GP Cover. They may be there at 8am (not a lot of use to me at 7.30). On a whim I phoned Heather, the Night Nurse – she was no longer working, but would arrange a “Rapid Response” nurse to come.

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 fucked-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.

Of course, once again, I had not understood. Once again, I had thought that this was my gig, that I was the one who would make the Unilateral Decision. Which was nonsense.

The Unilateral Decision was always Clare’s to make. And she made it. Tuesday 13th was the day that would mark the change. The day of organising the Care Package. The day that medicalisation, procedures, professionals and strangers would start to creep in and take over our quiet space. Clare, obviously, could not countenance that. And I would like to believe that her leaving at this point was also an act of love for me, as she knew that I really couldn’t countenance this unfolding new chapter either.

So she wielded the only power left to her. The power to excuse herself from the set-up. And what extraordinary power that was to behold. The power of her mind.

Clare has always been driven by her mind. She never really had a relationship with her body, with her physicality. So it is no surprise that what was happening to her body, what terrible wasting and swelling and pain – even though that was physically so debilitating – was not what took her away. She took herself away. Her ‘self’, her mind, brain, intellect, whatever you want to call it. That’s what had kept her going for so long in this terrible disease, and that is what called the halt. With such Grace, Power and Spirit. All she needed was to know that I fully sanctioned her wish. And the extraordinary nature of her brain – that in this situation, seemingly totally unresponsive, she heard me, and acted with such swift decisiveness.


And, of course, as Death and Comedy are natural bed-fellows, there was necessarily a few darkly-humorous moments afterwards:

To start with I had to make sure Clare was dead: that there was no pulse. I held her wrist: nothing. Just to be sure, I held my wrist: nothing. Exactly what had happened a few years ago when Clare and I were with our mum when she died, I was unable to find a pulse on any of us… and I allowed myself a laugh with Clare now, as we had both had a good laugh back then.

Within minutes of Clare’s death, the phone went. It was the Rapid-Response nurse. I told her Clare had just died: “Oh – and I’m already in the car!” I quickly assessed whether being British meant that I had to apologise for my sister’s death to someone I didn’t know as we had upset their travel-plans, but decided I didn’t have to.

And when Em was on the phone to our local Funeral Directors, she said who she was and was greeted by “Is it your mum?”

None of the above, however, gets close to the craziness when I went to register my mum’s death in York. It was the day after her death, and I had driven into town and parked in a big car park. As I got out, I bumped into her GP, who had signed her death certificate the day before. We talked for a number of minutes, and as she left and I turned to go to the Registry Office, I was accosted by a man holding a microphone:

“Greg? It’s Greg Wise, isn’t it? You’re live on BBC Radio York” (The car park is overlooked by the radio station) “What are you doing here?”

“I’m registering my mother’s death”

Without even the slightest pause “What’s in the Pipeline? Anything coming up? How’s Emma?”

Again, I had to quickly check my Being-British-Appropriate-Response –Do I thump him? Ignore him and walk off, or answer his question?

I spent the next few minutes “Live on Radio York”…


I hope Clare would be proud of me. Some weeks ago I gathered The A Team together and we went through her contacts, emails, my contacts and whoever the Girls could think of, and put together a “Phone Cascade” – apportioned between us. I was desperate that we do this properly, that nobody who ought to receive a personal communication about Clare’s death, should find out via Social Media, or any other public platform. I was, for a nanosecond, “Clipboard Greg”. Within an hour of Clare dying, the Cascade started, and the reason that I didn’t post anything yesterday was that not everybody who needed to be told had been told. Lovely Esther in Antarctica was still unaware… I managed to have a long chat with her this morning, but she already knew via the Aussie contingent. And apologies to whoever wrote in the “Comments” bit on the previous post, leaving their commiserations – I deleted them. Trying to manage the appropriate information-flow in this age is really hard. And, whoever reads this and feels upset that they had not been personally informed ahead of this public note – I sincerely apologise. We all tried our best.

So what now? Clare left her flat around lunchtime yesterday with a couple of lovely (and terribly well-dressed) gents from the Funeral Directors. I registered her death at our council Registry Office in town (where the computer system was down, so was unable to get a Certificate) and have arranged for Grably the Cat to go to his new home. He was, of course, was discombobulated by the day. We sat him on Clare after she had died, but he wasn’t interested – no Greyfriars Bobby he – instead went to sleep on his chair. But once Clare had been taken away, he left the flat, and has been in the garden ever since – just coming in for food, and then leaving. Luckily it is beautiful weather, still – 91 degrees yesterday (33 Celsius) and balmy nights. This evening the lovely Emma Clarke (one of the A Team) is coming to pick him up. She had Grably’s brother and sister for many years, now both dead, but still has 4 cats, down in the countryside, so hopefully our furry friend will be happy in his new home. I’ve got together all his “kit” – travelling basket, scratching post, bowls, litter tray to go with him so can feel some sense of continuity. Bless him – even I (by no means a cat-lover) have become very fond of this old gentleman. May he live out his remaining years in the same state of pampered-bliss that his first 18 have afforded him.

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 – November 19th. A Saturday, fortunately. Start with an “Open Mike” 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 1980s Disco. So that’s what we’ll have. Start sorting out your outfits.

I’ll post everything when we’ve decided. Along with donations to charities, for those of you who would like to do that.

This is a long post. Which is fitting, as you have all been on our journey, and needed to know the ending.

I will keep writing, as I have found this to be so helpful on so many levels. The enforced stasis that this has brought, although so hard for me, has also allowed me to sit and think and try to articulate the myriad of thoughts bouncing around. And even though this has been, on paper, about the journey to Death, I think it is more about the journey of Life. About living, about people, about relationships, about the essence of all things. And, I think, 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; live to allow the moments not to go by unnoticed and uncelebrated; try and be kind both to yourself and those around you; try to find a way to love and be loved; keep asking questions, keep trying to find answers; but know when to stop.

And with that, I will stop. For now. But leave you with this. Pretty much sums things up:


Love to all

The Roadie muses

After whatever latest moment-of-crisis has been overcome, our days meld seamlessly, one into the next. The rhythms of medicating, hydrating, emptying the bag, trying a bit of a conversation before the eyes roll back into the head, going to the shops for provisions, making up smoothies and watermelon juice, medicating, hydrating, emptying the bag…

I tried to mess with today’s rhythm by beavering away with phone calls and emails. I finally confronted Clare this morning with what she actually wants from her days. What those-in-the-know call her goals. Whether she wanted to see mates other than the A Team Girls, who pop in and out at will. It is her old friend Jules’ birthday today and I asked her if she were able at least to talk to her on the phone. So we did a test: putting the landline phone on speaker and calling my mobile. Seemed to work, and I called Jules, so they could have a chat. It went to voicemail. Ah well. We tried.

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. So, my task today on our Krypton Factor was to try and find out whether there is a way of guaranteeing a moment of wakefulness in the day that can be shared. Clare is most available, clear and present between 3 and 5. In the morning. Not great, unless she wants to speak with her Australian chums. 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 Dr Phil on his visits here: that there will only be “windows” which have to be seized. And we will never be able to plan when they will come.

I also attempted to raise what we want to talk about with Louise tomorrow. How we imagine we will use the care on offer. But Clare wasn’t willing to engage. I will try again. And it’s not just that she is finding it hard to sanction anyone other than her brother being here – she said to our friend Rose, this afternoon, 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, as she’s scared where it might go. So I have to start making unilateral decisions, which seems unfair, as 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.

Sorry. This isn’t as much fun as yesterday’s post.

Love to all

Reality Mortality

There was a Game Show on the TV in the 1970s when I was a kid called The Krypton Factor – referencing (I assume) Superman’s home-planet of Krypton and thus suggesting that the contestants needed super-powers to undertake the challenges set – mental agility, physical ability, high-intelligence.

I’m thinking of getting in touch with Endemol (the crowd who make Big Brother) to see if I can sell them an Immersive-Television-Reality-Show. Called – I don’t know: Terminal! or maybe Big Sister (a tad too specific perhaps??) Reality Mortality – I like that one. Ok – Reality Mortality it is.

On Reality Mortality we will have a group of disparate folk – all living in a house together, all being tasked to care for a terminally-ill patient. Nobody can leave the house. Everyone has to do their share of washing up. New daily challenges – stretching their physical and mental ability and intelligence. A “Diary Room” where they can bang on about the stresses of Compassion Fatigue, and their personal difficulties with their fellow carers. (Maybe they are all dressed in a kind of Army Combat Outfit – called, for the purposes of our format, Compassion fatigues. Or is that a gag-too-far??). One by one they will be voted off by the viewers, for things like forgetting to empty the bag, not being able to work out how the two Physical Therapy “slider sheets” work in tandem (I had to show our nurses how to make the Hospital bed – they had never seen such sheets…), not being able to come up with ideas of how to open the individually-wrapped Effentora pills (see post from August).

It’ll be HUGE. I’m already working on my acceptance speech at the BAFTAs.

No, no, but seriously, folks…what Clare and I are going through is an hour-to-hour Krypton Factor challenge. We had the morning visit from the Carelink pair. I set them the challenge of washing Clare’s hair in bed (for someone who can’t turn their head in any direction). A challenge-too-far it seems. Clare was stressed, the carers were not allowed to put her onto the commode to wheel her to the bathroom, as that is not in her ‘Care Plan’, so I sent them away, and have cancelled any care until we have the Big Meet on Tuesday. I gave the sis an anti-anxiety pill, and went onto the Internet:


Various things appeared: baby powder, rubbing alcohol, lemon juice, vinegar, spray shampoos. Then I discovered no-rinse shampoo: just rub-in, watch it lather, and towel it out. Wow. But it gets better – from a healthcare site: the “No-rinse shampoo Cap” – looks like a shower cap, but contains the shampoo inside. Just take it out of the packet, put the cap on the head, massage it, take it off and towel-dry. I have ordered 3.

Managed to get out for a few minutes to do some shopping. Went to big local DIY superstore and got rather confused at the various receptacles available. Didn’t quite have the courage to ask the passing Polish store-worker which one they thought would be optimal for collecting urine when I empty Clare’s bag.

I chose a washing-up bowl.

The lovely Fiona and her hubby, Richard, came over to throw me out this afternoon. Bliss. Until I got to Cocktail Hour at my house – opened up the fridge to get a beer, and was confronted with concrete proof that I have been away from home for too long: my beer drawer was full of salad. (I must ask Shebo what that is in Swahili, and add it to my collection of useful foreign phrases)

We had a gorgeous, if brief, moment together as a family again. Gaia cooked steak, had made a wondrous collection of side-dishes, and we shared a family meal. A quick trip down the road to give Clare her meds, and back up for a few games of Backgammon with Gaia, then a moment in my study. Which is in absolute chaos. I did, however, find an old newspaper article. “Relative Values” from one of the Sunday magazines that Clare and I had done, probably in the late 1990s. A couple of lovely photos:




And a selection of what we said in the article, starting with Clare:

Greg is absolutely my best friend. I was 18 months old when he was born, and apart from university we have hardly ever been apart. He found my flat for me, he built my kitchen, and until 9 months ago, he lived with me. My mum can count on one hand the times we’ve argued, and in fact I can remember each of those times…I feel safer with Greg than with anyone else. If we were in Mediaeval times he’d be a good person to be with – he’d fight off the dragons and evil spirits. He likes to protect and he likes to love… and when I’m with him I feel special and loved too.

And what I said:

 She is possibly the most caring person I know. She’s got such a good heart that can easily be abused… she has to take everything on her shoulders and make sure everyone is alright. I think a lot of the time she is looking for approval. She has to realise that she isn’t responsible for everybody else’s happiness…To be honest, I can’t see anyone not liking her, because she’ll try so hard to overcome any problem…Boyfriends and girlfriends come and go, but we’re brother and sister for life, and you can’t mess that around.

So, there we are. A reaffirmation of everything. A serendipitous moment, to have come across this article. True then, true now.

Love to all

Compassion Fatigue

Compassion Fatigue
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 practicing self-care, destructive behaviors can surface. Apathy, isolation, bottled up emotions and substance abuse head a long list of symptoms associated with the secondary traumatic stress disorder now labeled: 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.

I suppose it’s not Rocket Science to realise that the carer can start to mirror the person they’re caring for. Purely the amount of time spent in a situation must create a transference between the two parties involved. If Clare feels isolated, not-in-control, feeling the loss of identity that an active participation in the wider world had given her, marginalized, it’s no wonder I’m feeling these things as well, (of course, in a hugely less existential way) after 10 weeks of 24/7…

So what can we do?

I’ve done a great deal of reading over the last months about terminal illness and mortality, and just now, stumbled across a paper called “Hope in the Terminally Ill”.

I think it’s interesting to share with you all a few choice words from it:

Mortality is suddenly confronted, and the concept of hope wanes as the unattainable goal of extended life vanishes…But a seemingly paradoxical question arises: because hope is frequently defined as the expectancy of good in the future, how can a future defined in hours, days, weeks, and months provide hope?

When first confronted with a terminal illness, most patients typically relate hope to a tangible treatment or cure that can prolong existence despite overwhelming information to the contrary.

The obstacles that hinder hope: abandonment and isolation, uncontrolled pain, and devaluation of personhood.

Sources of hope: including family, friends, health care professionals, and God or a higher spiritual being.

In the context of a terminal illness, hope can exist even when time is limited. Such hope is bolstered by appreciating the patient’s value, strengthening and reconciling their relationships with family and friends.

Although physicians may find it hard to comprehend, when everything seems to be lost, that hope may actually be stronger than ever before.

I feel that this is the key to our present situation. Clare went all-guns-blazing (it’s obviously a family trait) at treating this disease. She tried everything – all the chemotherapy and radiation; surgery; a month at an Indian Ayurvedic Clinic; seeing a Healer; being on a Clinical Trial. Even when she was so ill, a few weeks ago, she was still contemplating aggressive intravenous chemotherapy. All hope-based.

Being told that the time for treatment was over brought with it the loss of hope. This is clear. And try as I may, I am unable to focus her outwards in any way – no possibility of what was written about in the paper of strengthening and reconciling relationships with family and friends. And I cannot help with this. This is something that may or may not materialise. It will not happen, I believe, until she comes to terms with where she is.

I was wrong, I think, in yesterday’s post to say that Clare’s locked-in state is purely to do with her physical illness. I think now it is much more to do with the loss of hope.

And hope is so powerful. We had a Woody Allen quote yesterday, today another great comic depressive, John Cleese, from his film Clockwise: “It’s not the despair. I can take the despair. It’s the hope I can’t stand”

Amen to that.

We had our first visit this morning – bright and early, 7.45am – from Kyle and Laura from “Carelink”. Before Laura had even got through the front door of the building, she let loose: “I’m such a huge fan!!” I suppose I’d forgotten that I’d ever had an existence outside this flat… You see?? Loss of Identity

They gave Clare a proper bed-bath and then started to go through all the paperwork required to set up her Care Plan. Unsurprisingly, mid box-ticking, she fell asleep, so we did the admin without her. All very thorough. And knowing that we have professionals on call – 24 hours-a-day if we need them – is very comforting for me.

It’s not nice to feel grumpy with your dying sister, and I’m glad I’ve been able to discover that I’m not just a bad person, but that my grumpiness has a name: “Compassion Fatigue”. And maybe now there is some hope for both of us in the potential support on offer.

Although Clare had me cancel this evening’s visit of the Carers…

Love to all

“Why, where are you going?”

So, after the wonderful premiere of “The Catheter”, I’m afraid to say it did not live up to its reviews… Somehow, mid-morning, the tube and its attachment parted company.

After a hasty pyjama-change, an unplanned trip on the commode-wheelchair to the loo, frantic bed-stripping, washing, disinfecting, drying, fresh linens, PJs and re-settling, I realised that all this is very much now “above my pay-grade”. A call to Louise of the NHS Carers: District Nurse to visit as soon as possible to check the catheter (I’d managed to plug the air-gap, but was not utterly confident, although had decided against the Duck Tape solution for now), and a hasty arranging of two carers’ visits per day over the weekend  – first thing in the morning for an hour for a wash, and last thing in the evening just to check everything’s fine.

After the lovely District Nurse had been and made sure the catheter was working, I told Clare of the weekend’s care-plan – and got back: “Why? Where are you going?”

Hmmmmm. As gently as I could I pointed out that she had asked for professional washing and “intimate-care” and that I also needed some respite.

It may be a tricky meeting on Tuesday with Louise, Clare and me. I understand completely that when faced with the chronic, painful and terminal illness that Clare is enduring, there is little energy available, or even interest, in looking outwards. That the day is necessarily self-absorbed. And I have been the constant over the last months: available, day or night, at the ring of a bell. Which, I must stress, I have wanted, just as much as Clare.

The Uncharted Territory that we have been navigating over the last number of weeks, trying to keep a steady course, facing square-on the new obstacles together, and in the main, solving the steady stream of new issues, has now come to a head. Medicalisation is starting to overtake the purely dispensing-of-meds/physical needs that, thus far, I have been able to serve.

Some years ago, a wonderful American friend of mine, James, was working with an outfit called the Heffter Institute, studying the help that LSD can give to the terminally ill – specifically in the alleviation of fear and anxiety. Unfortunately, and because those in positions of responsibility over us are, in the main, emotionally-stunted and blinkered, the trial was shut down. Can’t go giving LSD a good name, now, can we? I find this fascinating – as we are happily prescribed Opiates, synthetic Heroin and medical-grade “Speed”, but there you go…

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 and 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.

Love to all




For whom the bell tolls

I am aware that the style of these postings is changing. Gone are the days of my whimsical thoughts. More now about procedures. More medicalisation. Less personal. I will try and keep a bit of lightness about me in the upcoming words…

So, it was the World Premiere, last night, of “The Catheter”. I’d left enough liquids on the over-bed table to keep an entire lifeboat of shipwrecked sailors hydrated for a good month, so even Clare couldn’t get through that many glasses. What could possibly go wrong?

The bell did not toll for me the entire night. So, what went wrong was that I had the worst night’s sleep I’ve had since all this started: too hot, too cold, needed the loo, needed a drink, needed to check on Clare – exactly the same as the first night your baby sleeps through – you’re certain the lack of crying means they’re dead…

Clare did get through that many glasses, but thankfully the catheter did its job perfectly, and a football-shaped bag greeted me first thing. We managed to wrangle the tubing, make her comfortable, and she spent the morning in her usual deep sleep.

Our lovely GP, Miranda, came over for a visit mid-afternoon, as she hasn’t clapped eyes on Clare for months. Clare did her usual “Hello! How are you?” I left them to it for a good quarter of an hour. Miranda rejoined me in the living room, astounded with the conversation they’d just had, but trying to balance it with the obviously huge physical deterioration since she’d last seen Clare.

I was wrong to think a chat with a GP might exhaust the sister – she wanted to lie on the sofa (as we’d made that a plan-for-the-day this morning) and spend some time with Rose, who’d come over to chum her. Fortunately the day was lovely, so Clare was able to look out at the sunny garden, still in flower in parts, whilst getting Rose to make a list of phone calls she wants to make over the next days.

I was thrilled this afternoon to receive a call telling me that we had been Fast-Tracked into an NHS “Complete Care Package”: both nursing care for Clare and respite care for me. Potentially 24-hour. Wow. Louise, the lady calling, was adamant that I have daily care set up as soon as possible – both as she knew I was trying to shoulder the load on my own, and also as it’s important to set up a quotidian (is that Latin?? See – I was paying attention) rhythm with Clare; just so she doesn’t really notice when the daily care becomes essential rather than just welcomed. Louise is coming over on Tuesday – she normally arranges everything on the phone, but I stressed to her that Clare needs to be a part of any arrangements.

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 focussed. She’s had a list made. And I have been thrown a potential life-line 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 Super Hero. 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? Not a great deal, although I’m learning fast. And there is, undoubtedly, a great deal of “Collateral Damage” to all this, which I have to be needful of.

To know when to act, is the thing. I remember hearing a very interesting radio programme, some time back, about the Iraq invasion, I think. Stuffed with pundits and army-folk. And one guy really stood out for me – his opinion was that, actually, the easiest course of action is to rush in, all guns blazing. And it takes more guts to do nothing (if “nothing” is the best course of action, which it sometimes is). I have always been the “all guns blazing” kind of guy, the make-it-up-as-you-go-along bloke. Which has served me reasonably well over the years, but with a bit of age (alright, a lot of age) you get to know your limitations, the moments where pause is needed. I feel now that I am close to my limit. I am not ashamed of that. I need professional help. Clare needs professional help.

Oh dear. I haven’t done very well on the whimsy, have I?? To make amends, a couple of photos. A trip we all made to South Africa, back in 2007. Bit of a safari and a bit of a talk at the Market Theatre in Johannesburg. Can’t remember what the talk was about – film making perhaps? Suffice to say, a couple of gorgeous photos of the gorgeous sister in full-flow…

south-africa-8-sept-16Taking a question from the audience

south-africa-2-8-sept-16Answering the question. A Rose between the Two Thorns of me and Stephen Fry…

Love to all



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