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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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Doom and gloom

Wednesday, June 8, 2011 in cancer prognosis, medical care by admin | 1 comment

falling down and down

As a Jewish girl my first word was supposed to be taxi … and dutifully I hailed a big black taxi the other day, as I’ve been doing for 40 years since I came to London, only to find out to my horror that I couldn’t get in it.  I raised one leg, I couldn’t get the other to come up.  I wondered if taxi was going to be my first, and last, word.  Fortunately I had a woman taxi driver, and a carer with me, and the driver jumped out of the taxi, and together they helped me get in, and out again at the doctor’s office.  Going back was not so easy, because the cabdriver was a man not about to get out and help, despite a generous tip.  I had to sit on the floor of the taxi, and eventually in some embarrassing way made myself crawl out of it with the help of my carer.

I went upstairs and managed to put the incident behind me, then two hours later I had a meeting with my friend Ian and looked out the front door to meet him. I saw my mail sitting there, and it seemed easy enough to bend down and pick it up, something I could have done without a thought yesterday.  But once down I couldn’t get up again without his help.  I still thought this was just me having a wobble.  The next morning Martin came with breakfast and I fell on the floor next my bed, and I realized how often he had helped me, without me thinking about it.  My legs were getting very weak.  So now the problem is, do I try to get up, get off the sofa, or do I stay in bed all the time?  It is another step along the cancer road, falling down and down.

The next day I had a huge oxygen machine delivered, which sits beside my bed. It never runs out because it recycles the oxygen from the air. I’ve been told my lungs are going to go before anything else, and I definitely feel more breathless, another degree sicker, less well.

The attitude of my doctors has changed considerably too they come to visit me for my scheduled appointments, so it is all home care, just to make me feel better.  Age Concern are sending a Med Alert (push the button, care will come) this afternoon, that’ll make me feel really old, and infirm, but safer.  As one day follows another, instead of getting better as you expect from a disease, I’m getting worse – that’s just a fact of life.

[Some days later...]  I’m getting all kind of aids, but I’m making a mess out of them.  The Med Alert is tricky to use, and has disappeared; the wheelchair came, but I’ve not been outside in it – I just stay in bed. Every day I hope to use it, my friends offer to take me out, but they’re afraid, really, in case something happens, so they disappear.  It’s just as well, because I won’t go out anyway. The one thing that does work is the baby alarm, so I can call my carer (nursing help 24 hours now) so she can help me go to the loo in the middle of the night, just another humiliating experience.

I’m sorry this is all a bit gruesome, but I just felt I had to be straightforward.  If I can think of anything funny to say before I post, I will.

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Food and friends – perfection

Wednesday, June 1, 2011 in food by admin | 1 comment

To say that these weeks coming up to the end may be incredibly special may sound deluded, but right this minute what I want to write about is the pleasure I’ve had eating with some friends. No big deal I know, but for me I’m not doing all the things I usually do, and the thought of food – always important to me – has become paramount.

First, the amazing breakfasts made for me by Martin, melon and berries and nuts, and sheep’s yoghurt that I fought against for ages, thinking it was too healthy.

And last Saturday I had this craving for a hamburger.  Now in America you don’t care because you get a hamburger everywhere, any time you want, but I assure you, I don’t.  My friend Richard walked in with his usual flat white coffee for me, and a croissant, and I said Richard I have to tell you the truth, I want a hamburger. So he stayed on till 12 o’clock, and went to a local supermarket and found an organic black angus beef burger, which he grilled for me, with a large tomato; it was absolutely fabulous, God’s gift to me.

Julia came over with a huge spinach pie – where did that go?  It disappeared into the refrigerator, and it was only me eating it, and now it’s not to be found.  Then it’s not my fault that the coffeeshop downstairs from me makes their own icecream, the best in London.  Asa my friend and I gorged on it (while she read her Weightwatchers magazine). We did the chocolate, the hazelnut, and the cherry yoghurt, oh my gosh too good too good, made me slightly ill but it was worth it.  My longest-standing friend Susie left me 2 great pots of chicken soup, Jewish penicillin, that she made while she stayed with me. Antonia also came over, we work on the blog but she’s also a good cook, everyone in my life is associated with good cooking, I think I’ll keep it that way.

What the hell, what a way to go out, my last few weeks, just eating the great food my friends make. The steroids keep me hungry, and my friends keep me fed, a good combination.

There’s a difference between this and paid-for care, no matter what.  My friends are foodies.  In fact it’s one of the few things they all have in common.  Asa and I used to play golf, it’s true, but we also used to peruse the chowhounds site on line, and find the best ribs and breakfast in Las Vegas, and boy did we find some strange places for great food. It’s hard to duplicate memories like that.

I started to become a tv addict.  Masterchef wasn’t on enough, so I would watch ‘Come dine with me’, which has to be one of the worst foodie programs.  People get invited for dinner, and the host or hostess is supposed to make a sumptuous feast for them, and the guests are chosen to be highly critical.  Some don’t eat vegetables, some don’t eat fish, others have never seen caviare, and they never warn their host of their idiosyncrasies.  The hapless host goes off to make vol-au-vents full of curry, throwing all the spices into the Magimix together, never tasting anything, and his guests accuse him of making them sick.  If that wasn’t enough they have to provide entertainment – I’ve seen them dress as animals. But no matter how hard they try, they will be criticized.

Margie in the old days happily making dinner with friends

This is actually the opposite of any dinner I’ve ever given – if people came and criticized I don’t know what I would do.  My specialty has always been Thanksgiving dinner, which I’ve done for about 40 years, and I try to invite non Americans, because I don’t want people trying to tell me that their grandmother makes thing a different way.  We’ve had in the past a turkducken, which is a turkey stuffed with a duck stuffed with a chicken, incredibly hard to do and ending up looking a disaster, but still we all thought it was amazing.  I was given due respect.  Every year I would try to make a significant number of pies – say 15 if 30 were coming.  For ideas I used to lean heavily on the Gourmet magazine, which has now gone out of business.  It was lots of fun, and people remembered it for years.

Recently I have loved watching ‘Two greedy Italians’ eating their way through Italy, stopping at grandmothers’ houses, heading for festivals, or finding sausage heaven.  If there is anything you need to know about mushrooms, these are the experts.  I love the fact that they cook what they find over a jury-rigged fire, maybe just in a can.

I dream about cooking at night, hallucinate making recipes (I can feel the knife in my hand, chopping herbs), and it’s always a shock to wake up and remember I’m no longer safe even to go into the kitchen.  So I leave it to my friends, and am very thankful that we share this passion.

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