In the Guardian

The Guardian has published an obituary - I wrote it (eventually), and they edited it for style and length.  Thanks to my sister for making this happen.

Balayées les amours

Helen and I had time to say everything that needed to be said.  But I have one regret: I didn't understand - I hope that Helen did - that once she started on terminal care drugs she would no longer be fully herself.  So we never discussed how she wanted decisions made about increasing her dose - should she have more midazolam to help her relax, or less so that she'd be more lucid and perhaps be less anxious for it.  I hope I did the right thing, but if you have to face this situation it's a conversation you should have.

Race for Life

Team Helen will be Racing for Life this morning.  Please give generously.

Grief and Loneliness

Kind people ask me how I am.  The first answer is that I am alive and Helen is not, so why should I complain. Which I express as "I'm ok".

The second answer, which I cannot long conceal, is that I am grieving still.  All sorts of things set me off.  And I don't mind the tears, they are a tribute to her.

The third answer, which I have kept mostly to myself, is that I am diminished without her in a way that I failed to foresee while she was alive.  I don't mean that I miss the things we used to do together, though of course I do.  I mean that I take less pleasure in the things I enjoy, because I cannot talk to her about them.  I mean that I have less confidence in my judgment, because she isn't here to trust in it.  I mean that I have less motivation to do necessary things I don't want to do, because I can't tell her I've done them.  I mean that I am alone, not in the sense that I lack congenial company, but in the much deeper sense that I am without the person I had built into my life.

I tried to think of a better word for this than 'loneliness'.  Is there one?

Eulogy

We held Helen's funeral last month at the local crematorium, in accordance with her wishes, followed by tea at her college.  Speakers representing each aspect of her life spoke about the wonderful woman they had known. This is what I had to say:

I mourn Helen's loss. Her loss of the joy of seeing her children grow up. Her loss of the leisure she had earned through her years of work as a doctor and a mother. Her loss of the future we had planned together.

I celebrate Helen's life. She once told me "we have only one life", and that is how she lived, setting herself every day to do everything she could, as well as she could. Helen's life was an achievement which you would think impossible until you've seen it done, and even then you still can't quite believe it. And she did all she did not by fighting the world but while making friends, many of them here today, of all the people she worked and played with.

I thank you Helen for everything you gave me, and especially for your children: J, R, and M, the fine young men who carried you in here, and our wonderful children together, I and S. I am learning from them every day that it's possible to love you and miss you, but still enjoy the many good things in life.

I'm going to read a short poem by e.e.cummings, who died a few weeks after Helen was born.

i carry your heart with me (i carry it in
my heart) i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)

i fear
no fate (for you are my fate,my sweet) i want
no world (for beautiful you are my world, my true)
and it’s you are whatever a moon has always meant,
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the bud
and the sky of the sky of a tree called life; which grows
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars apart

i carry your heart(i carry it in my heart)

Happy Birthday

Happy Birthday Helen.  You're not here to enjoy it with us, but we remember.

We'd planned to go somewhere where we could see the transit of Venus.   I'll get up at dawn and have a look at the clouds for you.

Donations

If you'd like to show your appreciation for this blog, or, more plausibly, for Helen, please donate here.

Thank you.

CEN

Helen is featured in the Cambridge Evening News today.

Obituary

Here

Torch News

There's lots of admin to be done, which I've been getting on with rather slowly. On Friday I phoned the Olympic Torchbearer line to tell them that Helen will be unavailable. The person I spoke to seemed not to know what to do, so I left it with them expecting to receive an email in due course confirming the cancellation. So far as I was concerned they could cancel the Olympics too.

I just got a call from a charming lady bearing condolences and asking me if I would take Helen's place. I am delighted. Crying too, but this is very right. The Olympics are back on.

Ninon de Lenclos

La vieillesse est l’enfer des femmes

Helen will never be old.

Goodbye

H died peacefully shortly after 7am this morning.  She just stopped breathing.  She was beautiful, lying at rest with her colour fading.

The hardest part so far was when the funeral people took her away.  No longer my Helen, now just Helen's body.

Let me whisper my last goodbyes

H hasn't woken since yesterday afternoon.  She has no response to touch or voice, other than to open her eyes very slightly when turned.

Weaker

H is barely moving now.  Her breathing, with the aid of oxygen, is easy enough, but she can't hold a beaker to drink from it.  She can nod when I offer her something she wants.

On Saturday H agreed to increase her dose of both diamorphine and midazolam.  We've increased the diamorphine again today because she was in some pain again.

I've told all the children that it will be only a few days.  They are all getting on with their lives.

Painless

This never would have made sense to me before, but it's a comforting thought that I could split some of H's drug supply with her and lie down with her forever.

Don't worry, I'm certain I'm not going to do it.

Breathing

When the children were babies, I used to go and check they were breathing, just because it was good to know.  Now when I've kissed them goodnight I come back and check H is still breathing, because she might not be.

How much tranquillizer?

On Wednesday we reduced H's midazolam from 25mg to 20mg, and on Thursday morning, after a difficult night, the nurse was very keen to increase it again but I refused.  On Thursday night for the first time for over a week we weren't given a "hospice-at-home" nurse: I don't believe that's because of the disagreement, but I couldn't help considering the possibility.  H didn't sleep at all, so nor did I very much.  I consulted three of H's colleagues none of whom was against increasing the dose again, so now it's back to 25mg and we've got a nurse again tonight.  The lead nurse from hospice at home came to visit this morning, and suggested that we should raise the dose further: she says that when patients are relaxed enough at night they often have moments of increased clarity during the day.  I'm sceptical about that.

This afternoon I noticed that H's drugs line had more bubbles in it than usual.  I watched it until the motor fired: the bubbles didn't move and a drop of syringe contents leaked from the top of the line.  So I suppose H had been getting no drugs since the syringe was refilled hours earlier.  I phoned for a nurse who came and sorted it out.  Later, H was in some pain, and also unusually lucid: I don't think that's a coincidence.  It seems to me that it might be best to reduce the dose of sedative for a few hours during the day and increase it at night, but no one's offering that option.

The lead nurse also told me that it's common for terminal patients to have a few days when they're more vigorous before the final decline.  She advised me to talk to I&S about how little time there may be left.

More food less drugs

H has slept for  most of the last two days.  I've been thinking that she may be on too much midazolam - the lack of mental clarity that results makes her anxious in itself.  Her GP agreed to try reducing the dose a notch.  The nurse didn't want to change anything over Easter while they were understaffed to cope with adverse consequences, but we've done it today and it seems to me that H is better for it.  She got dressed and came downstairs for a few minutes again this afternoon.

Now I'm trying to get her to eat something...

Downstairs

This morning, H got to the bathroom for a bath.  This afternoon, she got dressed and came downstairs for a few minutes.  All sorts of people manage that, I know, but considering how ill she was a few days ago it's remarkable.

8 today

S is 8 years old today.  In the morning H sang happy birthday and at tea time she ate jelly and ice-cream - the most she's had for days.  In between I took S to Build-a-Bear.  S had a very happy birthday, thanks to all the help we had from family and friends.

Stronger

Surprisingly, H has got physically stronger during the week: she can now walk a few steps unaided.

This doesn't change things very much, but it makes me smile a little.

The big Boss

At dinner today S said I should sit at the head of the table because I'm "the big boss".  Later, decorating fairy cakes, she made one for me, writing on it "Daddy   The big Boss".  I never had that job before.

Difficult

H was a difficult patient today - it's good that she's still got the energy.  I couldn't safely leave her at all, so my elder sister came over and took care of I&S.

I think I'd be a better nurse if I were a natural chatterer.  At one point H demanded that I read a book: I picked up The White Tiger which I saw had a bookmark quite near the beginning from our honeymoon.  I read a couple of pages, but H said she couldn't follow it.  I may read the book anyway.

Wedding Anniversary

H was more lucid yesterday, especially with visitors, but drowsy and confused today.  She did have a clear moment late this evening when we were able to exchange a few words.

My brother and younger sister came for the afternoon and told me to get out of the house.  So I went with IA to the barbers', where we were overdue.  We both get the same cut: it makes me feel like a proper dad.

Two old friends drove three hours each way this evening to visit H.  I enjoy seeing the recognition in her eyes.

Sleeping

After a restless night, H has slept almost all day.  When she stirred, she wanted only a few sips of water, and my hand to hold.  She pushed away her oxygen mask and the bedclothes the nurse had put on her.

Sleep well, my love.

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.

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.

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...

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.

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.

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.

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.

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.

Scan results

The scan shows new growths in both lungs: H has compared it with the planning scans for the radiotherapy she had on the existing lung legion: the new growths seem to be present there but smaller.  It's a plausible hypothesis that they've grown because of the break from chemotherapy, and will stop growing, or at least slow down a lot, now that she's back on it.  They'll be another scan in three weeks to find out.

There's some progression of the T12 lesion also: presumably that's responsible for the sacro-iliac pain, though it's not obvious from the scan that it would be.  At least there's no new growth to be seen causing the pain.  Which doesn't make it any less painful.

This is bad but not disastrous: H and her consultant discussed radiotherapy to the T12 lesion and decided against, fearing that the spinal cord there has already had all the radiation it can stand.  That means they think she'll be alive in six months for it to make a difference. I've told the consultant that the Olympics will be cancelled if H is unable to carry the torch.

H signed a form in support of an application for treatment with pazopanib, which is what she'll move on to if the next scan shows further progression.

Good news, bad news

We had a good holiday - H got out on the slopes every day.  She's lost some strength, but she makes up for it with enviable technique.

Her general health has improved a lot with the break from chemotherapy, but she's been getting worsening pain in and around her left sacroiliac joint.  It seems probable that there's a new growth causing it, but we don't know where exactly - the pain seems to be neuropathic.  She restarted chemotherapy yesterday, and will have a scan later today.

Time for a break

After nine months of chemotherapy with barely a pause, H is having a break for a couple of weeks.  She needs it, the stuff is poison and she was suffering, from weakness, fatigue, and a worsening skin reaction - she opted for the most conservative treatment for her lung lesion, radiotherapy, because she felt too ill for anything more.  She's perked up considerably already.

Tomorrow we're off to the alps for a week's skiing: H hasn't committed herself to getting out on the slopes, but she hasn't ruled it out either.

It was just after our last skiing holiday that the cancer was diagnosed, so we're coming up to a year (but half-term is a bit earlier this year).  When we get back, it will be more paclitaxel.

Talking to I&S

Two weeks or so ago H and I agreed that we shouldn't put it off any longer.  H didn't feel up to it, so I lay on the bed with I&S and told them that the doctors can't stop the cancer growing, and that eventually it will be too much for H to live with and she will die.  They took it very well - I don't think they were surprised.  I asked them if they had any questions and S asked if there would be a funeral - yes, and if we would have a new mummy - I don't know, but I will look after them whatever happens.  Then H joined us and we had a hug.

I told the "pastoral care" teachers at their schools what I'd told I&S.  S talked about it to her friends, and the school decided they should make the information official, so they sent a letter to parents - they let us edit it first - and the form teacher and the pastoral care teacher spoke to the class.  S was ok with all this, "so long as everyone doesn't crowd around me".

They both seem to have decided that the thing to do is to be extra good and helpful.  I told I that I'd talked to his pastoral care teacher in case he was upset, and he said no, he was all right.  Then he won the county under-9 chess championship at the weekend.

The children are brilliant.

I wish this wasn't happening.

Upper respiratory tract infection

Chemotherapy compromises the immune system, which means colds are bad.  Especially since if you've got a high temperature you have to go to hospital to make sure you're not suffering from neutropenic sepsis, which can be fatal.

H has had a cold for the last three weeks.  We went away to Yorkshire for a week over Christmas, and hence had a late evening visit to York General Hospital - H's consultant had kindly given us contact details there before we went.  And on Saturday she spent most of the day at the hospital here.

Colds are worse if you've got lytic lesions in your ribs and spine, because coughing and sneezing can  break weakened bones.  H was in agony yesterday (and she doesn't complain lightly) from rib pain, presumably due to a pathological fracture.  All the rest of us were shaken by it.

She's in bed today, in less distress.   She's hoping to be active again later in the week.