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8th July 2011

Marjorie Walker
22nd December 1938 – 8th July 2011

Marjorie passed away peacefully on Friday 8th July.

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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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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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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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