cancer prognosis

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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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Can your blog save your life?

Friday, May 20, 2011 in cancer prognosis, chemotherapy, remission from cancer by admin | 2 comments

When I began blogging – back in November 2009 – I was heading towards a depression.  I’d been diagnosed with stage 4 cancer, and there was very little that could be done about it.  They had already given me six months oral chemotherapy – easy, no side effects – then operated on me three times, and then more chemo, and radiation too.  I can see why I was depressed.

Oral chemo saves the day - Martin and I take off for Mexico

I know what to do when I have a depression, because it wasn’t my first bout and I googled my cognitive behavioral therapist Bill Mitchell.  By an unbelievable serendipity, he had moved his office from the city (miles away) to around the corner from me.  I immediately booked an appointment and went to see him. We talked through the sadness of the disease and the prognosis, and what I could do about it.  At that point I had very little physical voice, but Bill remembered I could write, had written for the Open University for years as well as a book on child development, and he knew I had a sense of humor. He suggested I start writing a blog about my experiences with cancer. Alternatively because of my own years doing group therapy (I am a qualified psychotherapist), I start a group. I couldn’t face a group with my voice – it would have been difficult to be a group leader, a therapist, though not impossible as leading doesn’t mean talking all the time, it means being able to shut up.  But the blog intrigued me, because it was new and sexy.  In my 70s by then, a blog sounded pro-active and the way to go.  So I went immediately to the bookstore, and bought a book about how to write a blog, contrary as that seems. And from that point on, there was no stopping me.

I always thought that my blog would be funny, because my whole family had cancer and we always tried to laugh about it, even my poor mother lying in bed with breast cancer tried to be humorous about it, though I was so angry at the time I couldn’t get it.  And my cousin Nora found a funny side even with very serious cancer.    I’m sure it helps keep her alive.

My first blogs were terse, smart arse; I tried to be funny; but as my depression lifted, my blogs got more complex, and I depended on writing them and on the responses I got, as much as anything, to give me energy in my life.  I was very lucky that as my health deteriorated, my friend Antonia Johnson (who’d already been proofing the blogs) came up from Bath once a week to help me type these blogs, because otherwise I wouldn’t physically be able to do them.  Antonia nags me into writing, because she knows it does me good.  In fact when Antonia comes to town everyone clears out and we get to work.

One of the big advantages of the blog is that I can correspond with my friends – keep them up to date with how I am – without sending out endless emails, or trying to have telephone conversations, which I find very difficult, even though my voice has come back somewhat no one can understand me on the phone.  The sad thing is that this is all happening when some friends are going deaf, they take their hearing aids off at will so my kvetching can’t be heard any more.  But I am heard on the blog.  I am very moved by all the comments I receive, and I wish I could answer them, because people give a lot of thought to them, and it is deeply appreciated.   I’m very excited that so many people are reading my writing, it is an encouraging and invigorating experience.

My last blog will be written by Antonia and I’m beginning to think that it will not be too far off, but I have so much work to do before I leave this green and pleasant land.

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Core decisions

Wednesday, March 16, 2011 in Cancer and media, cancer prognosis by admin | Add a comment...

Synchronicity sometimes plays an important part in your life.  This week I was faced with what I thought was the most important decision I’ve had to make since I began my cancer treatment.  I’m on stage 4 terminal cancer, with, most likely, only a few months ahead of me.  I have to make a decision whether to spend those months fighting off the cancer with chemo, or doing palliative care, taking painkillers and steroids to keep me awake.  It was all very confusing, and I was blithering, worried, studying, speaking to people, and along came the earthquake and ensuing crises in Japan.

I feel connected to Japan, having been a Japanese Buddhist, and made several trips there.  But the kind of decision you have to make when you’re hanging from a building wondering what to do next made my cancer dilemma seem trivial. And now on the news today, they’re wondering what to do with the nuclear plants – this must be the kind of decision that’s worthy of people’s time and attention.  I can’t imagine what decision you have to make when you’re floating in the ocean on a piece of roof, or a tatami; and what kind of decision you have to make when you have to abandon your home, and know you may never see loved ones, loved possessions again – all that made you who you are.

I sit looking at my options, I’m so lucky to have options. I have options about my treatment, about who takes care of me, and much more important I have time to speak to my son and my grandchildren, time to meet with my friends and have quiet evenings.  I see the woman trying to understand how to feed her baby hard rice, because she has no alternative, and here I decide between full supermarkets, or restaurants.  How do you keep things in perspective?

Is it arrogant to compare my quandary with any of the problems faced by the Japanese people?  They don’t get many options, it all happened – is happening – so quickly.

I feel very strange writing about this but at the same time I feel compelled to say something.

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Dead as a nit, but home

Tuesday, March 15, 2011 in cancer prognosis, drugs, medical care by admin | 1 comment

My needs were actually very small – morphine, and the edge of my queen-sized bed.  I had a carer telling me I’m going to fall out, but for some reason, even though I sleep alone, I sleep all scrunched up in the corner of it.  And after years of psychoanalysis, I know why – I used to share my bed with10 stuffed animals and a real cat and I’m still accommodating all of them.

I had one more day at outpatients, having radiotherapy, chemotherapy, and an oncology appointment.  We had a review of my case with the radiotherapy nurse, and I found out at that time that neither the chemo nor the radiation had worked.  This is something I still find difficult to believe, but it was confirmed by Dr Spittle.

I lugged home a pile of pills, enough for two months, trying to figure out what it meant not to have any more treatment. Instead of feeling bad that there was nothing more that they could do, I was relieved it was over.  I wouldn’t be prodded and zapped any more. My friends called, hoping that I would take a holistic approach, having now been turned out to pasture by the medical brains; would I like to be reiki’d by a specialist only know to a select few in the world?  Would I like cranial osteopathy, by someone who’s cured all a friend’s family (they all look healthy to me)? Would I like to start a macrobiotic diet?  I bought the carrots, leeks and onions, and thought I’d make some macrobiotic miso soup, but they sat in the refrigerator for a week, which can’t be good for them. I’m not quite up to cooking yet.  As to the rest of it, no one’s touching any bit of me until I’m ready to be touched, which may be never.

The first week passed slowly, with the new drug oxycotton making me sleep all the time.    A look at Youtube told me that I was sharing my drug with the street people.  I’m not sure how I feel about that.

Scarecrow, scarecrow whats that you popping?
A powerful pill they call Oxy Cotton
But it’s so tiny, that it got you dragging
Haven’t you heard big things come in small packages

[from 'Oxy Cotton' by Lil' Wyte]

During the few hours I was awake I was also sharing the news with friends that the chemo and radiation hadn’t worked. This proved hard, as I don’t really know what to say.  I think friends would really like to hear something definite.  But nobody can guess the date of their death, and I’ll hold on to the reins for as long as I can, no doubt.  I’m at the stage where I’d think about refusing to have chemo again, and I’d certainly refuse radiation, which is causing all the problems right now. [I wrote this a month ago, and now radiation is not being offered; chemo decisions are complicated, and difficult, and belong in another blog, not yet written.]

But I was beginning to feel stronger, and the opera in London was looking great – it seemed like a miracle when I found the perfect seats for Parsifal at the ENO.  It lifted my spirits to think I could go out. I believe that it’s good to start out with five hour operas when you’re feeling crappy, and then move down to easier ones later on.

The oxycotton monster followed me to the opera

We had the perfect seats, which were right in front of the wheelchairs, on the aisle, as close to the Ladies room as you can get, and near the sofas for the intermission.  And Martin had the car right there to take me home.  Martin said I fell asleep in the second act, and he woke me up when I snored, but I noticed others around me sleeping as well.  But by the interval at the end of the second act I thought I better demurely go home.

Pity really, as the third act may have been the best, and is certainly the most relevant, since it deals with death and salvation.

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