Saturday 31 March 2012

Mother-in-law

H's mum has been calling quite often recently, to ask after us all.  She's been very with it.  But this afternoon when she phoned and asked how H is and I told her H is very ill I found she'd forgotten everything.  I couldn't think of anything to do but tell her all over again.

I got her to call a friend to come and be with her while she got over what was to her bad news.  The friend called me back and said all the right things.

I felt a bit sorry for myself having to deal with that.  But H is losing her life, and her mum is losing the last of her family.

Thursday 29 March 2012

Terminal care

The end-of-life care people have swung into action.  We're now equipped with an oxygen pump and a commode.  H has been fitted with a pump which administers small doses of drugs every couple of minutes subcutaneously through a needle in her abdomen: currently it's giving her diamorphine and midazolam.  We've had visits from two nurses and the GP so far today, and we had a nurse here overnight, provided by the Arthur Rank House "hospice at home" scheme.

This is all a great help.  But it's still impossibly hard, for H especially.

Wednesday 28 March 2012

Without Feathers

H is worse - her breathing is more laboured and she needs more morphine.

Up to now she's been managing the few yards to the bathroom (thanks to the morphine she's in no hurry), at the cost of minutes panting for breath afterwards.  Last night it was too much for her.  IA, who was on his way to bed, witnessed her distress, and for the first time cried over her.  H told him how much she loves him, and that the worst thing about dying is leaving her children.  "It's not fair", he said: he meant, as I knew because we'd talked about it before, that it's not fair on her, not on himself.  Like his mother, he is a remarkable person.

Looking at H's beautiful face, it struck me for the first time that the thing that's distinctive about chemotherapy hair loss is not so much the bald head as the missing eyelashes...

Monday 26 March 2012

Walking through the valley

I've found it hard over the last year to enjoy the good times to the full.  H's doom has always lurked umbratilously in my mind.  H has been better at forgetting herself.

It's strange in a sense that it should be so hard to escape the shadow of death.  At my age we all accept our own mortality, and even as children we accept that our family will not live forever.  I think the difference here is not so much the untimeliness of it as the expectation of life going on after her.

Friday 23 March 2012

In bed

H has been worse for the last three days - she's made it down the stairs once, briefly.  The effort of speaking for any length of time makes her breath faster.

Her biggest problem with mobility is postural hypotension - when she stands up her blood pressure falls to something too small to measure easily.  She's trying some medication to increase her blood pressure.  She thinks her breathing difficulty may be caused by 'shunting' - too much of the blood flow to her lungs going through the tumours instead of the alveoli.  But the GP put her on antibiotics in case of an infection and her breathing does seem better today.

We've had a series of visits from terminal care people, helping us make plans.  But I've not given up hope that the pazopanib (or she could switch to sorafenib) might keep her going for a while.

Tuesday 20 March 2012

Prognosis

We had a frank talk with the consultant today about what to expect.  She's a bit less pessimistic than H, but only a bit.  We got the details yesterday of H's torch-bearing assignment in July, but July is too far away.

Friday 16 March 2012

Progression

H had a scan on Monday which shows progression in her lungs and a new growth on her liver.  Liver metastases are the cause of death in many cancer patients, but H is not very concerned because she thinks the lung mets are more threatening (this is not comforting).  Her consultant I think was more troubled by it, but didn't want to argue with H.

On Wednesday H started on daily Pazopanib tablets.  There's a reasonable hope that the drug will slow down the disease for a few months.

She's spent a lot of time asleep in the last couple of weeks.  This is the effect in some combination of the morphine, chronic paclitaxel poisoning, and the disease.  We don't know whether pazopanib will be better than paclitaxel in this respect.

Friday 2 March 2012

It's my wife and it's my life

H came home from the shops this afternoon howling with pain.  I called the GP who came round at once (thank you) and gave her an injection of diamorphine.  It's good stuff, but it's wearing off now.  She's started on MST - slow-release morphine.

Anniversary

It's one year since the cancer was diagnosed: I've changed the preamble above slightly to reflect it.

We've had a year of living with cancer, which is more than the median survival with this diagnosis.  That's good, in context.  But we've had it now.  H is getting sicker; there's a transition to be faced from living with cancer to dying from it.

Perhaps the next treatment will delay that...

Bad

H had an MRI scan on Thursday: it confirms that the growth at T12 is pressing on a nerve, and there's a new growth at T10, with no symptoms so far.

Yesterday she had a nerve block injection to try to relieve her sacro-iliac pain.  The injection contains a local anaesthetic, which acts quickly then wears off in a few hours, and an anti-inflammatory steroid, which should take effect after about 24 hours and last for a few days.  Neither of these were any use last night, when she was crying with the pain, physical and mental.  She coughed up blood too.  In the end, extra morphine helped.

At about 4am, IA came into our bed, as he does sometimes when he has a nightmare.  The two of us had a cuddle (H was asleep), and eventually he spoke "we should make it a special day every year".  We talked about it: he meant the day H dies.  He looks for the best in everything.