Decisions, delusions and befuddlement

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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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My last wish – no palliative care?

Wednesday, May 25, 2011 in Decisions, delusions and befuddlement, death with dignity, medical care by admin | 1 comment

When I first heard the phrase palliative care I cringed. It was offered to me by a kindly doctor at hospital, who meant no harm, but I thought it was a death sentence, and in a way I’m still convinced of it.  I went next day to my oncologist, and said ‘they’re offering me palliative care, what is it? I don’t want it.’  And she concurred with the idea of it being some idea of treating you until death. I wanted no part of it.  “I am not afraid of death, I just don’t want to be there when it happens”, as Woody Allen said.

I certainly don’t want to be around – so I avoid anything that has the word palliative associated with it.  Which all has to do with fear of dying which I don’t deny is real. As I get closer to the time, I understand it more; but I try to deny it actually exists.  How can we be afraid of what we don’t know?  I do get afraid in the middle of the night, but I don’t really know what I’m afraid of.  Being a burden to those around me? Not getting to the hospital on time? I don’t really know.  I’m sure if I was better read, I could find someone who’s described all this, but you can’t ask so much of even the best authors.  How can someone write an accurate description of their death, and die at the same time?  You tell me.  Maybe I’m missing something.

I try to deny death actually exists (photo by Hannah Collins)

So here we are, offers of palliative care rejected, until BOOM reality strikes! And I had a bit of pain, and palliative care suddenly jumped into my vocabulary as a positive possibility. I was recommended to the palliative pain expert, and my life changed – at least, after a few horrible weeks (which included hospitalization – I was hallucinatory, frightened beyond belief, I could hold something in my hand that wasn’t here, I could see things that didn’t exist; why do people do these things for fun? Imagine.  In fact, I can still do or see some of these things, but you know? You do get used to it.  Sometimes it’s even funny.)

But now on palliative care, my drugs are all under special license (quarantine) – I have to have a special nurse to count the pills. I could sell them for lots of money, but I resist the temptation to go on the streets to do so.  And I carry around a card to say if I ever run out of steroids to ring an emergency number to get some more – but I’ve lost the card.

So moving down the long line which probably ends up in hell, I now find that palliative care might move onto hospice care (dum di dum dum – ominous drum roll) scarier than ever.  So next week I’m gathering up my courage to meet with what people tell me are the best carers in the world, the Macmillan nurses, from the St John’s Hospice.  Of course, they’re coming to me, all their services will come to me, I haven’t been out for a week and more (bar a few good restaurants).

They promise a hospice-at-home service, which will give me intravenous morphine, a life of carefree hallucinogenics until I get to the next world.  Could be alright. It’s funny how as your pain grows your tolerance for intervention grows with it.  I simply don’t care anymore, but I’m trying to keep my mind intact.  [I think she’s doing ok. Ed.]  When you get to the stage where you’re taking more and more pills, and it takes a special nurse to count the medication, and another to apply the bandages, you start to think there must be another way out of here: perhaps a one-stop shopping service – like a hospice – might be useful.

While I’m not giving up the idea of staying at home till the very last breath, I’m not holding my breath either.

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Death is too complicated – skip it

Wednesday, March 23, 2011 in Decisions, delusions and befuddlement, death with dignity by admin | Add a comment...

I just received an offer of life insurance where they don’t check your health record.  The small print was that you had to stay alive for a year.  Oh well; a piece of mail for the bin.

Cancer has given me a long time to die – perhaps too long.  My first living will was done in 2004 – it was quite a shock to realize that 7 years ago I was absolutely convinced I was going to die.  And I’m still here.  Although I’m more convinced than ever that stage 4 cancer has got me, I don’t want to be too hasty and end up in an apartment with nothing left, or even worse tags on everything saying who gets what so it looks like a saleroom.  I have to come up with a plan. Any suggestions?

the cancer curmudgeon nearly buried under papers

I didn’t want to spend the last few months of my life talking to accountants and lawyers, but it has to happen.  I need to figure out what I have to give away after I spend an unknown amount on the expenses of my last months.  (And what happens if I spend, assuming I’m going to be dead, and then I live another 7 years?  Oh my God, it doesn’t bear thinking about.)  You just can’t give money away without the tax man looking over your shoulder.  I wouldn’t be surprised if they came to the funeral.  I can see the ‘suits’ now: IRS/HMRC/whoever, all there counting their share of the gold.

Should have, would have, could have, all come in to play. If I had set up trusts funds for grandchildren or given assets away years ago I would have avoided taxes.  It feels like the tax that would be levied adds up to more than the money that will be hanging around after expenses.

The worst part is getting rid of everything. I mentioned it to my tax lawyer and she immediately sent me a form.  It is called a ‘letter of intention’ and I imagined everything I owned or thought about owning would be listed in categories so that all I had to do was fill in the name of the person who was getting it.  NO. It had a paragraph of legal jargon, followed by an empty sheet with only two columns: item and person who gets it.

OK. Where do I begin to give away all my junk.  Just to remind you all, I’m 72 and I have friends younger and older. BUT from about 60 up most people are trying to get rid of things. ‘Downsizing’ is the most popular catchword.  My god child (21) is someone I imagine taking all my clothes and junk jewelry (I own no expensive jewelry). She takes a size 0 to my size 25, also there is 50 year gap in our ages and tastes, so forget it.

I have a dear friend who has a sprawl of a house and she was good enough to ask for a lamp.  At least there is one lamp with a home.

The biggest dilemma comes with art work.  It is the problem anyone who gets at all involved in contemporary art has. One swans into a gallery, feeling on top of the world and falls madly in love with an artist’s work.  It fits the budget and is one of the smaller works.  (It grows every year you have it).  Twenty years later your taste has changed and the artist has gone into oblivion.  You call the gallery in the hope that they might still be interested in the artist and might even undertake selling it on your behalf.  FORGET IT.  They take a message and will call you back some day.  Don’t hold your breath. Auction houses – well, maybe someday, lug it down here and we’ll  look at it.  eBay – it feels wrong to dump an artist who you once thought might become great.

A friend of mine emailed me this morning. I have a small flat in Miami Beach. I haven’t been there in over a year and a half. I always figure if you haven’t used something in that long a period you probably don’t need it.  Her plan was to pile up all the things she thought I might need in London on my sofa, and send them back with my friend Martin. Too much stuff.

I’ve done my will over and over again: my living will, my dying will, my almost dying will, my letter of intention and my health care proxy, not to mention all the accountants and lawyers one has to speak to, I would advise that you put death off as long as possible.

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Cancer Remission Celebration: The White Truffle Festival, Alba, Italy

Saturday, January 8, 2011 in Decisions, delusions and befuddlement, Life after Cancer, after cancer, food, remission from cancer by admin | Add a comment...


I began to feel feisty after the fifth month of cancer remission and – googling the internet – found that the Truffle festival in Alba, Italy was on in October.  I knew I would feel better by then, it was a month away, five months after my last treatment.     I decided to go for it.  My friend Sweetpea, a great traveling companion, took a week off from her shops in Miami and we met at Heathrow and flew to Milan. Then a train to Turin and a car rental and we were there.  I arrived tired but not too tired to have dinner at the organic restaurant “La Contea” which adjoined the inn. Then Sweetpea walked into Neive and I went to sleep.

Truffles for sale!

The next day we drove into Alba. Truffles, salami, porcinis: at the Truffle fair; one drowns in them.  I used to think white truffles were rare, but having seen at least a million that day, I’m not so sure. Every stand had hundreds of truffkes and there were enough left over to stuff mega salamis.   I saw truffles that cost over one hundred euros each, but that was just the first week of the month-long festivities.  I guess the thousand-dollar truffles come out later  for the arrival of the stars attending the famous truffle auction.

My first close encounter with the white truffle came when I had about 4 grams (think about 30 Euros) shaved on my lovely soft-boiled duck’s egg at the organic restaurant the night before.  Delicious if you love fresh eggs, which I do.  I basked in the delicious smell of white truffle, but then the whole restaurant had a truffle kind of odor.  It is the taste I’m not sure about.  It seemed like the emperor’s new clothes.  I decided that the restaurant owner (also the waiter and maitre d’) had been too parsimonious when shaving off the thin layers and the dish needed many more grams – big bucks, big tastes – but it also might have been that chemo was still interfering with my taste buds. The ritual is that the waiter, or owner in this case, brings out a small scale and weighs the truffle before it has been shaved.  As the dinner went on more and more shavings are taken from the truffle.  At bill-paying time what remains of the truffle is weighed again and the cost calculated, this is added to the cost of the food and the service charge.

Shavings of white truffle make even a pile of raw meat look like art

The next day we went for the big experience: Piazza Duomo,  a restaurant which had just won two Michelin stars.  If you can’t taste the truffles here forget it.  The restaurant is my idea of perfection.  It serves about 40 people about eight tables; six were taken.  The walls were very light, pastel murals done by Francesco Clemente. The service was supportive without being pompous or over zealous.  There were many different tasting menus and even à la carte. We chose the truffle menu, of course: this was why we were in Alba.

The ritual of the weighing of the truffle commenced.  We had a truffle the size of a golf ball to start with and we were going to have the waiter shave away.  This time it was completely at our discretion.

For the first half hour we were offered one after another fabulous amuse-bouches.

The first sounds uninteresting but was delicious:  the very ends of cauliflower served with a light broth and the smallest leaves of the flower for decoration;  this is the way to get children to eat vegetables.  Then we had a small portion of potato soup (very thick, like jelly) with a quail’s egg lurking at the bottom, served in a glass dish in the shape of an egg shell.  The top is removed for serving. A few shavings of truffle went over this. I think I got a bit of truffle taste, but the smell and the taste are so closely aligned it is difficult to know.

The New Yorkers at the next table ordered à la carte and had the most tantalizing salad. (I was asked not to photograph them, but althoughI have chutzpah when it comes to food pictures I never had the nerve.)  From my vantage point, a glass dish holding a small green hill of tiny salad leaves was visible.  A dentist’s utensil, like a pincer, was provided for eating this delicate masterpiece of baby green leaves. A saucer in the bottom caught the dressing so that it could be drunk. I was jealous.

Next came scallops with a black truffle and anchovy sauce, and I gilded the lily with more shavings of white truffles.  Then came the carne crudo, which was outstanding.  Again I piled on the truffles because I had eaten beef tartare once before and thought the truffles would improve my negative feelings about it.  I need not have bothered – with or without the truffles this was memorable.

Then came the home-made pasta – of course, pile on the truffles.  At this point you would think everything would have tasted the same since every course had truffles.  It doesn’t, because white truffles are like transparent paint on canvas, where you can distinctly see hints of the color beneath.

Out came the partridge, in a fois gras tree (not pears this time).  I had cooked partridge twice in the last weeks because it was in season and I kept buying it at our farmers’ market (the first time mistaking it for pheasant).  Just the breast and the leg were served making it easy to eat and even with the fois gras sauce it was very subtly flavored.  I tend to go heavy on the thyme and lemon, but here it would have overpowered the very, very subtle truffle; and if you have it at my house you have to tackle the whole damned bird.

Mont Blanc Better to eat than climb

The main dessert was a Mont Blanc, a chestnut ice cream, with a chestnut pudding topped with snow, and a chestnut-flavored chantilly cream. I stuffed the extras (cookies, chocolates) in my handbag, but ate the angelic chocolate foam.  And then the bill came and I realized the taste of truffles is the taste of money. (Approx. $400.00 for two – and my friend doesn’t drink wine.)

Walking through Heathrow on the way home,  I realized that I couldn’t carry all my paraphernalia, and I worried (needlessly) that there would be no porters.  But I was right to worry for another reason:  Dr Spittle knew immediately that my cancer was back.  Lucky I got away when did.

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My surreal morphine world

Thursday, December 16, 2010 in Decisions, delusions and befuddlement, after cancer by admin | 1 comment

Mumbling morphine Marge fights malignant cancer cell Mafia

I woke at eight,  in a panic.  Seven is the hour when I must arm myself with morphine to fight the mega cell mafia attacking my right shoulder, threatening acute pain.

After a few weeks on morphine my thoughts go back to the time I said I would never take it because I didn’t want hallucinations.  Now I think ‘What is a few hallucinations between friends?’  and I am adjusting to a surreal, eccentric way of life.

I take my magic tablets and wander out in the cold to see James Turrell’s art installation at Gagosian Gallery.  Nothing to do with cancer;  just an art piece;  how wrong.

In the middle of the gallery Turrell had built a space ship which was to be experienced like an MRI scan.  There was a technician, dressed in a white coat and with serious glasses. She checked in each candidate for the machine, and just like a real technician she asked were they pregnant, epileptic, subject to migraines  – the usual.  I told her I was on morphine and receiving radiotherapy.  Since her everyday job was gallery assistant and she was dressed in costume she probably saw before her just an old lady who was entering into the action and having her on.  She gave me the release to sign and in I went.

I lay on a bed and was rolled inside this bubble, all alone, to see a changing light show of gorgeous color and strange sounds that had been taken from the machines and transformed into a modern composition.  It was very sixties and psychedelic.

After a few minutes, aided by the morphine, I had no idea whether the color was emitted by the machine or was coming from my own surreal head.  Then just as I was thinking of pushing the eject button I saw an old woman with gray hair and black glasses reaching into the machine and ushering me out.  NOW that was a pure hallucination.  Immediately after I came out I told the serious group of art critics, writers and gallerygoers what I had seen.  I can’t imagine what they made of it, but it’s not so unusual for me,  on a day under morphine.

It only gets stranger.

I am twitching around trying to sleep when the fire alarm in the building went off and Martin, my friend, came blazing in to my bedroom sure that I was burning down the bedroom with my WMD, in other words my iPad, Mac, iPhone and several electric pads, all plugged into a floor outlet where I am sure to spill hot tea.

Not me this time.  This time it was the dental office on the ground floor.  A cheap floor light fitting had caught fire.  The smell of plastic percolated through the building.  The tenants appeared in 1-degree weather dressed in bathrobes to wait in a seriously expensive part of London, W1, for the firemen, ambulance and police cars which were to arrive after about 30 minutes.  It was the perfect ending to a surreal day and I didn’t hallucinate the burning plastic light fixtures that caused the blaze or the good-looking firemen.

I'm the weirdo coming out of the building dressed in nightclothes plus who knows

It will be an Xmas unlike all others. Or will it?  I’ll still be separating fact from fiction in a surreal world.

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