Anniversaries

The last three months have seen the anniversary of Helen's diagnosis, our wedding anniversary, and her death and funeral.  Today is her second posthumous birthday.

I had some idea that after a year everything would be easier.  It's not, it's harder.  Perhaps just because there's no magic calendar that makes the desolation go away.

Happy birthday my love.  We remember you.

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.