not the end, but...

C's light went out at around 4.40 this morning.

I'll be back

passing thought

Sometimes I think that C will never get out of bed again, will never see our garden again, or walk around it with me, will never taste fresh figs again, or gulp cold water on a hot day, or lie in the sun in a hammock and reach up to pick an orange from breakfast, or wear any of those fine clothes and shoes with which she bedazzled the streets of every town she has graced with her presence: and then I think, oh but she did do those things, and dozens, hundreds, of others equally exquisite and bliss-provoking, and she did them many, many times.

And then I think about something else.

still here...a vignette

Yesterday, and I’m talking to the visiting hospice nurse to fill her in on C’s condition. We were standing either side of the bed, talking over C, who is in Sleeping Beauty mode: her face, still lovely, and pale beneath the fading tan, is framed by the lace of her nightgown and the broderie anglaise trimming the pillow. She has been asleep for hours, and did not move when the nurse, Viv, came in.

Viv and I were discussing the best way to minimize the occasional acute pain she has been getting from the ascites that has swollen her abdomen, and which is greatly aggravated by any movement, and particularly coughing. The nurse had suggested she would be more comfortable if propped up in bed, but I pointed out that in stillness, C was in absolutely no pain, but when moved, was in agony – brief, admittedly, but still agony.  ‘She doesn’t like to be manhandled,' I said.

Timed to perfection,  the words ‘Speak for yourself' floated up from the frail figure on the bed.

the first shoe

It's been a wild fortnight, settling down a little now: the irony has bled away from the blog title. It’s two months since C got out of hospital for definitely the last time (she insists on dying at home, and preferably in the garden if I can get her there, and has made absolutely bloody sure that no medico in the south-west peninsula is unaware of this) and we had a fine time, so good and full at times that there was no hope of me getting on here, although the real reason for the sparsity of posts is the usual laziness and difficulties in finding time to upload photos.

As a result, you will miss various planned posts: one was entitled Star Quality, about the way C enchants doctors (one of whom she moved to compassionate tears by teasing out how her grandfather had died of pancreatic cancer), nurses and ambulance drivers with her extraordinary life force,  sense of humour, kindness and awareness: even the guy who brought her home from hospital in a taxi was moved to comment to me when they arrived, ‘That's an extraordinary woman you have there.’ (‘I know,’ I replied, because I do.)

Another one was provisionally entitled Deadlines and Goals, and the importance of having things to look forward to and aim for in the near and mid-future, in order to facilitate living in the present: with our various anniversaries, pet and people birthdays, we can keep much of the calendar covered, but for some while she's been looking to the triumph of reaching 65 on 26 July (she had a lovely day, btw, eschewing all vague half-formed plans for celebratory jollies in favour of doing what she loves best, spending a sunny day in the wildlife garden we made), and once that was reached, and the weather went off, she felt suddenly bereft, and low, and the next significant date, my birthday in October, seemed a little too far away. We beguiled our time with the Olympics, though, dashing out into the garden to ‘beat the bounds’, an activity that involves wandering up and down the paths, checking things over, seeing what's coming and what's going, pausing occasionally to do a little light deheading and often breaking off to get involved in some delightful task, so that the bounds are rarely beaten in one go, sometimes not in three or four.

Then there was one I hadn't titled, about our small adventures the Friday before last, when C found a monthly art class she could go to in the depths of the country, there to fulfill an ambition cherished since the days of 1950s TV, to have a go on a potter’s wheel, when she made two ‘recognizable’ pots (her words). This led to thinking if there was anything else we'd never done that would be nice, and we've never had a puppy (all our dogs have been mature rescues), so, being the modern man I am, I immediately got on-line, and tracked down some Jack Russell crosses in Winkleigh. C then spent the weekend asking ‘Have they rung yet?’ every half an hour (they hadn't), so on Monday, when she was taking a constitutional down to the Millennium Green, I rang the local vet and discovered there were three JR puppies at Cheriton Fitzpaine, but  a few miles away. We were there before lunch, and chose a chap called Scrap, to be delivered the following Friday.  That lunchtime we went to buy supplies: kibble and chewtoys, a collar and a cage; much fevered and joyful anticipation in the house.

That evening C was talking to our friend Phil on the phone when she felt a bit sick, so she asked me to take over the call, which I did, taking the phone on to the landing. Five minutes later I came back into the bedroom to find C hunched over a bowl. ‘This isn’t good,' she said, and indeed it wasn’t, with bowl filled with gobbets of bright red blood.

Of course we got the medical cavalry in, but with C refusing to contemplate hospital at any price, there was nothing much for them to do but stand by and palliate. Although she brought up blood three more times that night, it was progressively less copious,  blacker, and more clotted, giving hope that the bleed was over, but it came back the following day, when C’s lovely GP was in attendance. This caused a crisis, in which she lay back on the bed fighting, rasping for breath, her eyes rolled back in her head, lids half-closed. 

I was holding her right hand to my heart, and the GP stood to her left, stroking her forehead, both urging her to relax, to let go, as she fought and fought, and then suddenly she was still: breathing stopped, suspended, pulse too: I turned my head to look at the clock, which says more about me than I’d care to know, and looked up at the doctor. As I did so, there was a huge, tearing, intake of breath, and Chip jolted forward, her eyes open, as an adrenaline surge restarted her heart – that was something to witness. 

And since then, slowly, steadily, she has improved, with no more bleeding: she is still tied to a syringe driver feeding her pharma heroin and a powerful anti-emetic sedative, a combo that leaves her pain-free and often slipping into that realm between consciousness and un, where many delightful nonsenses gambol free, but the Marie Curie End of Life nurses have been withdrawn. Also, the puppy was delivered to us the day after the second bleed, and, as far as I am concerned, has a lot to do with C's rallying: there's always room for a little more love in everyone’s life.

She remains, of course, very weak, too weak to get out of the bedroom, and although she is eating a little of what she fancies, drinking plenty and peeing well (something I did not know is that people dying of wasting diseases generally stop peeing naturally before they die), it’s difficult to see how this would improve radically enough for her to get out into the world again unassisted, if at all.

A blood transfusion was mooted, but she would have to spend days in the hospice in Exeter to get that, there are no guarantees, and she would still, in a phrase she repeats like a mantra, be waiting for the other shoe to drop. She has refused, and I am with her all the way.

So our days have resolved into a routine of puppy play, daily re-up visits from the community nurses, daytime TV and lots of simply lying down, holding hands, and floating free

I’ll be back very soon with some photos

whack and crack

So, Monday morning I get up to make C a cup of tea, and after three seconds, I'm flying. Unfortunately, after four seconds I'm landing; halfway down the stairs, on my coccyx. Probably not the worst pain I've ever had, but it's up there, and still pretty potent, and intermittently sickening, 96 hours later.

This led to a bit of role reversal, with C, feeling better every day, looking after me, although I can still get about. On Wednesday, we even had a couple of hours in a rare sunny garden, until C felt a pain in her side and went indoors. I soon followed, and we followed the time-honoured ritual of falling asleep watching a recording of Homes Under the Hammer (we know how to live!).

Around seven, I roused myself, woke Chip and went to fetch a meal: when I got back C was screaming in agony as the pain in her side went exponential. I'd seen this before, when my pal Bill cracked a rib, but I kept my counsel and did my best to mitigate what C described as the worst pain she ever felt (and she's had pyelonephritis, a fractured skull, tooth abcesses and recurring shingles with the ME) until Devon Doctors got there. It is a rib injury, they decided, although I do not think it can be broken because it has settled over the last 36 hours into a relatively dull pain, so I assume – hope, really that it's a crack. She's gone to Day Care for the first time today (she got a lift!), theoretically a chance for me to play music and do the heavy, noisy or noisome housework that I can't really do when she's here, but I can't really face making or eating breakfast,  let alone Extreme Dysoning.

As someone on my internet forum suggested, I'm going to have to stop dancing under ladders and breaking mirrors over the heads of black cats...

two dozen

Today is the 24th anniversary of our first wedding. 
I really want to celebrate this, the fact that C has taught me everything I know about loving and being loved, the beautiful things – gardens, homes, animals, numerous numinous moments of joy and laughter – that we have created, or cared for, or both, and all the tenderness and natural beauty we have enjoyed together. And the way I would celebrate is in words and pictures, but right now, a rare burst of sunshine and C woke up feeling better than she has for months, so we're off to make more memories, or simply to drift in the infinite present, poised and immortal, so it's going to have to wait.

Coming home

C finally had her procedure on Friday, and according to the consultant, it went as well as they could have wished: C is certainly feeling, and indeed looking, much better for it. They fitted two stents in the 'biliary tree' (which I had not heard of before) and another, four inches long, in her duodenum. They have listened to C, have taken in account her two wishes to see out this summer – should it ever begin – and never to have to come in to hospital for further restenting. The position of the duodenal stent means they will not be able to replace the biliary stents should they fail again, so they have taken a belt and braces approach to the latter.

C is staying in hospital over the weekend as they wean her off the syringe driver that has been delivering round the clock anti-emetics and morphine, but the current plan is for us (my friend Phil is coming to stay at Sandford tonight) to go and break her out after tomorrow, at which point I'm hoping the medical stuff will be replaced by more pretty pictures...