The Funeral – Part One

Tuesday, July 19, 2011 in death with dignity, friends and family by johnson | 1 comment

Many of Marjorie’s friends gathered last Friday, the 15th, to celebrate her life and bid her farewell. It was a sunny day in London, and despite our sadness there was a lot of laughter as we remembered her.

Margie did not write a blog to be posted after death, but we talked about how her friends would contribute; she did so want to achieve 100 posts. (I can hear her saying ‘damn it’, to herself, with a purse of her lips, and then laughing at her own frustration.) We also talked of a more permanent version of Cancer Curmudgeon. I have transcribed the funeral, and will post this over the next few days, but would like to invite those of you who follow her blog, and knew her, and have stories they might like to share of times they spent with Marjorie, to post these as comments.

During the service the Reverend invited any of us to come up and light a candle, and say anything that they might want to share with the congregation. Here is what Stella said:

‘I went to see Marge just four days before she died, and I didn’t know whether it was appropriate, but I used to cook for her quite a lot, and the reason I thought it might be appropriate was I’d read on her blog that she was really pleased that she still had her taste, and one of the things that brought her friends together was that everyone was interested in food. And so I went round and bought her lots of expensive food and I went to a cheese shop, I spoke to the man in the cheese shop for ages, and tried to get a selection that was exactly right at the time, and absolutely perfect and ready to eat, I made sure I got the selection right. I kept thinking it wouldn’t be ok because she was in a hospital bed – at home, but in a hospital bed – at this stage, but I decided to just do it. She’d got all these dressings on her chest, and I got the hospital tray thing and I displayed all these cheeses, with grapes, a real banquet, really over the top, and then I knew she’d been feeling quite bad that day, and I said look Marge, maybe it’s not the time, but she said yes she would love some. Anyway in the end we shared this amazing food, and she still managed, right near the end of her life, to talk in detail about every single flavour, and we talked about where each cheese came from, and she was incredibly enthusiastic, even though she was weak, and the nurses were really annoyed with me because she spilt a lot of the cheese all over her dressing, and I felt really bad but that was how Marge was, she often had food down her front [much laughter] because she’d eat and talk. She was an absolute inspiration to me.’

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8th July 2011

Saturday, July 9, 2011 in death with dignity by johnson | 1 comment

Marjorie Walker
22nd December 1938 – 8th July 2011

Marjorie passed away peacefully on Friday 8th July.

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Thanataphobia – fear of death

Friday, July 1, 2011 in death, friends and family by admin | 2 comments

I have moments, particularly in the middle of the night, when I’m frightened of dying.  Every week I get a little weaker, and I’m frightened, it would be churlish not to fear death.  I’ve studied how people react to and suppress such phobias, but in the end it doesn’t help very much.  I understand why people repress their fears, why they invent amazing stories of heaven and hell, and why they sacrifice chickens in order to project their fears.  I certainly had enough analysis to have some understanding of all that.

Am I afraid of being alone at the moment of death?  Of course I am, but then again not really; most of the things that have happened to me, the traumatic and life-changing experiences, have happened to me while I was more or less alone. Being a single woman forces you to face things alone a lot.

I often think I might stop breathing tonight, or tomorrow night. I’m very conscious that things are getting worse every week, but I’m also conscious that the days are good, and I don’t want to die yet.  There are certain friends I haven’t seen enough of, even now.  I said I would write 100 blogs, and I’ve nearly got there … wouldn’t it be amazing if I got it right on the mark?

Plans are being made still: I’m getting more equipment; my room becomes more and more like a hospital; more carers are here to help.  I’m frustrated by how little I can do for myself, but I don’t wish I was dead; I still want that extra day, or that extra week, or that extra month.

The physical space I live in is getting smaller and smaller, and once the hospital bed arrives I’ll be finished.  My activities are not what they used to be – I read less, I watch more junk television.  But what does it matter, if I see my friends, once, twice, maybe 3 times a day?  And I still enjoy my food – perhaps not like before, but I know what tastes good.  And I have so much work to do still.  Work on my finances (boring), work on my family (emotionally testing), and things, the right things, to give away to the right people (tricky).

Two weeks have passed since the above was written.  I lie now in my hospital bed, waited on hand and foot, 24 hours.  We’ve gone through the commode stage and beyond, and now I have a catheter, so no more falling over on the way to bathroom.  I’m now bedridden, but I have to tell you it’s not as bad as I thought it might be; I’m not finished yet.  Stage by stage as I deteriorate, I still find pleasure in small things – even if it’s just feeling fresh after a bed bath.  I look forward to my meals – that hasn’t changed – and to visits from friends and family.

I wouldn’t have believed four months ago that my body would deteriorate so far, so fast, but the months have gone very quickly; and the down and down has been clear to chart, step by step.  But I can still, just about, engage with people , thanks to drugs.  I never thought I would ever take, much less need, so much morphine, which now I welcome, drug addict that I am.

I’m shocked; the door is closing rapidly.  My oncologist just left and she is very saddened by my condition and the fact that on one occasion I’d been left in pain – it’s only been one night, no maybe two actually, but they were horrible times, mistakes were made or it wouldn’t have happened.  I’m now on double the pain medication and hopefully will never have this problem again. I feel like I’m waiting for pain to come, but I hope that all my doctors are right and that I’ll never get that pain again, but that takes a lot of trust when once the system has gone wrong.  There’s a lot of wishful thinking, and trust, that goes into this.  I’m going to do the best I can to believe it.

What is the worst pain?  The psychological pain or the physical?  That’s a difficult shot to call.  When you’re sitting and watching the deterioration of your own body, it is an excruciating psychic experience, even when the drugs eliminate the pain.

Let’s look at how things have changed:  from having friends over for dinner, and going out together, and the theatre and all that, look at how much time I spend asleep now.  Last year my oncologist and I went out and had a lovely dinner at a restaurant I couldn’t possibly remember the name of now – couldn’t think of going there, let alone walking there now. I struggle to write this blog, with my friend Antonia.  I can’t think very well because of the morphine, but I don’t mind, I must get rid of the pain.

I know this will be a tough blog for people to read, but I think it’s important for you to know the truth.  Maybe this is the war on cancer people talk about, more hopeless than the Afghanistan war, no exit strategy.  It’s impossible to believe, you can’t believe in your own death. The idea of your own death is very difficult to get your head around, I can tell you.  It’s tough to live through, and it’s tough to think about and write about, and at the end of the day it’s very scary; but it’s even tougher on your friends and family and those around you every day.

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Funeral Arrangements: Part Two

Thursday, June 16, 2011 in Decisions, delusions and befuddlement, death with dignity by admin | 1 comment

The complications of funeral arrangements are just vast; I had no idea.  One of the hardest things for me was what music is going to be played, which confused me no end – whether live or recorded, classical or otherwise.   I’ve had to make my decision, and here’s the list, although anyone who wants to contribute can do so.

‘Nimrod’; Variation IX, Adagio, from Elgar’s Enigma Variations

Faure’s Requiem – Pie Jesu

Turn Turn Turn (The Byrds)

Amazing Grace

Dream a little Dream of me (Mama Cass)

We have all the time in the world (Louis Armstrong)

The Royal College of Music will provide singers to contribute some of this music live; an extra advantage of being in London.

What else?  Where will the ceremony take place?  Ian Brown advised we went to Golders Green Crematorium; I’ve heard good reports of the space, and anyway it’s the only game in town.  Then I need to organize the limousines to transport guests and singers and speakers to and from the crematorium; the flowers (thankfully a friend’s doing those); caterers, recommended by another friend – I hope they’re good even if I’m not there to taste it.  Then there’s the blog – to print or not to print?

I asked a friend of mine, who is a very well known conceptual artist, to take pictures of me through these last weeks. I’m quite happy with them, and in fact have already used one to illustrate my blog. I just try to do my best, without being too controlling.

You will have to take me at my word on the next bit of forward planning; to me it seems unbelievable.  I have a Rottweiler estate agent who has mounted an attack on me. It started out with missives of love and stories of god creating miracles that would cure me, and then quickly slid to her own agenda.  Believe it or not, what she wanted to do was to find out the day I was going to die, so she could jump in and rent the apartment out again as quickly as possible, for more money.  So one day I get an email asking me to sign a lease, and the next day I get an email asking me to pay my rent for 3 months in advance, though I didn’t realize I didn’t need to pay it at the time.  The giveaway was that she wanted to visit my apartment with the landlord, to evaluate it I guess, and then somehow the landlord slipped out of the picture, and she still wanted to visit, to sniff around.  So next Tuesday she’s coming over, documents in hand, and she’ll get paid just to shut her up.  Let her God give me strength.

Going back to funeral arrangements, last night on the BBC Terry Pratchett the novelist, who now has Alzheimer’s, presented a program about Dignitas, in Switzerland – the only place in the world where you can go, without residency, and have an assisted death.  I’ve studied this before, and it was good to hear the detail of it again, and to hear from people going there, and to see someone actually dying there, which is no beautiful sight, I have to say. First of all, it’s almost farcical.  They ask you many times if you’re ready to die at this moment.  It didn’t seem to me that the person who was dying, who was a very wealthy businessman, had particularly chosen the right time. It was around Christmas, and his perfect corporate wife was there, with the perfect makeup and the perfect earrings (I wondered if she stayed that way, every day of their perfect 30-year marriage?), holding his hand at the very end, though there seemed to be something strange in their relationship. (But what do I know about 30-year-marriages?)  The room he died in was in an urban estate council flat rather than a country estate complete with mansion like his own home, so not a place he’d have felt at home in.  Having said he was ready to die, he was given something for his stomach, and after a long conversation about what chocolate he’d prefer, he was given poison, and then chocolate to take the taste away.

I started to think about going there myself, though I doubt that I have the energy to do so. Even the snow on the beautiful Zurich suburbs didn’t entice me to go there; it was so bleak, and when he took the poison he keeled over and couldn’t breathe, and it took him about 20 minutes to die.  It didn’t seem like fun as advertised.  They talked a lot in the program about hospice care, but not about hospice at home, which seems like not a bad alternative. I don’t know how long it’s going to take me to die, and I can’t know. I don’t know who’ll be with me, and I can’t know.  It’s tempting to want to know, and to control it, but I couldn’t make myself really want to do it.  And anyway, I have too many good days now, like today.

The best introduction to Wagner is right here - cheered me up no end

Have you ever seen Bugs Bunny sing Wagner?  I’m glad I saw that before I keel over.

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Denial

Friday, June 10, 2011 in cancer prognosis, medical care, remission from cancer by admin | Add a comment...

Denial – why the hell not?  I might have taken the wrong tack on this whole illness, and I should be prepared to make a complete turnaround of my way of thinking.

My oncologist came in the other day and threw me an idea I wasn’t expecting: she said that if she had terminal cancer she would deny it.  She’s a very energetic woman, but she’s my age, 72.  She flies her own airplane single handedly and does all kinds of things I would never attempt.  But how about denying terminal illness to your friends and family?  I think it’s really difficult, but I can imagine it, it could be fun.  I’d sit here and make up porkies (lies) all day long.

I’d start out by telling them the welts on my body came from embracing an orangutan in the wilds of Borneo. My problem is that I did embrace the orangutan (truly), and it had a few leeches, but I didn’t get any skin disease… but we’re making this up, so what the hell. 

Next symptom I find hard to explain, is, um, the infinite tiredness. I slept 15 hours last night, but if you’ve seen the movie ‘Up in the air’, that gives you an idea (though it’s a terrible movie): what might be called infinite jet lag. I can pretend I’ve been traveling all my life on overnight flights (thank God I haven’t). 

The voracious appetite is just who I am, and I’ve never lost it, it’s my heritage. I don’t think that anyone would suggest it was abnormal for me. 

Taking 40 pills a day may be harder to explain away, but I can deny I’ve ever taken any pills for cancer. II’d just say they come from an expensive Los Angeles / London doctor – he is just down the street – highly recommended by my hypochondriac friends who see him, and pay him a million dollars a year.  He once placed what looked like a heavy brick on my chest, and asked me to put up with it for a half hour, which sent me running out of his office forever.  So I’m a non-hip non-compliant patient, still in denial.

All of these lies would have had to be invented when I first got diagnosed with breast cancer 16 years ago, so I’d have consistency, but by that time I’d left La La Land and all its trimmings and fictions behind me; and sharing was in style in those days.  And then it wasn’t too serious at first – stage 1 cancer, a quarter mastectomy, not really too much of a problem, I thought (was that a kind of denial?).  Second time around having had to have a complete mastectomy, my whole attitude changed, and I fought it.  I had someone come over to do Pilates with me, I had a hypnotherapist, full-time care, organic vegetarian cooking, bags of vitamins – did I think I could make myself invulnerable, by doing all these things?  Who knows, but it worked, and I got four years of remission, which was fabulous, and that’s no lie.

I’ve been in some true denial situations, all the same. What turned out to be the most drastic were the streaks across my breast, which I didn’t think anything about because I didn’t want to go back to London, I wanted to stay in the sun in Miami.  I was foolish enough to keep asking my friends what it was – but at last one told me to go ask my doctors, instead of her, and when I got back the shock on my oncologist’s face was undeniable, she couldn’t believe I’d left it that long.  Still, after we established an aggressive treatment plan, and I assumed all would be alright, I decided to have a reconstruction, wanting to be beautiful again – how deluded can you get?

It’s good to get all this off my chest.

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