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remission from cancer

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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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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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Minimalism offers little comfort

Friday, May 6, 2011 in remission from cancer by johnson | Add a comment...

I was staying at the Delano, the newest, poshest hotel in Miami Beach.  It was the year of minimalism. My room was ‘flat white’; nothing in it.  I was on my own, sleeping naked between the luxurious white sheets.  Three o’clock in the morning came and I had to go to the minimal bathroom.  I walked in, made myself comfortable and walked out, closing the door (the wrong door) behind me, only to find that I was locked out of my room, staring down an empty hallway, naked.  Options few to none.

If I knock on another door, they will either be sure I’m a prostitute or a complete nutter.  It would either be a jail cell or looney bin – neither option appealed.  No curtains hung in the hall, not even a fire extinguisher.  Nothing.  I remembered cleaners walking in and out of a service room and walked as confidently as I could down the long hallway and believe it or not the door was open.

In the minimal service room there was a trash bin and an elevator door marked service.  The trash bin had a clear plastic liner. Whoopee!!   I took it out of the bin, stuck my head through the top and tried to get my arms into something that looked like sleeves.  It all fell apart and turned into a transparent shroud of plastic bits and pieces.  Would I dare go into the lobby?  Maybe not, but I was ready for whatever lay behind the elevator door.  I rang and was greeted by a huge amount of noise.  The hotel was in full swing even at 3 in the morning.

In the elevator I struck gold, three bags of laundry.  But here is the problem.  It is a large lift and deep, so what I had to do was to reach into the back, grab a bag, while trying not to lose control of the elevator.  Got the first bag, but it was full of dirty napkins: useless.  What should I do?  Should I push the emergency button and risk alerting security?  I decided to try for the second basket but I had to keep pushing the open door button or all would be lost. When it turned out to be another bag of useless napkins, the only choice left was to push the emergency button and go for the third bag – this produced dirty tablecloths. I now had on a plastic bin liner and a soiled tablecloth, and was ready for my lobby entrance. I headed out the door only to be greeted by three Cuban security guards. I had no Spanish and their English was minimal.  They would not let me in my room as they thought I was drunk or high or worse and I had no ID… so they wanted to return me to the storage room as I guessed they could at least identify the former location of my attire – if not me!  After what seemed a lifetime they finally let me in my room.

The next morning I was too embarrassed to face anyone, staff or friends. I managed to confess to a couple of friends who gave me little sympathy as if I had somehow done this on purpose! But I took their advice and checked out – more in anger than embarrassment. And that was the last time I stayed at the fancy pants or in my case no-pants Delano.

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Ignominious fiasco, or how I ruined my golf pro’s career

Friday, May 6, 2011 in exercise, remission from cancer by johnson | Add a comment...

Inspired by an open call for ‘mortifying disclosures’ on opensalon.com, I am taking a break from writing about cancer.  Time to think back.

The Golfers and the Showgirl

It was the last day of the Pro-Am Golf Tournament in Las Vegas.  We even had our pix taken with a show girl.  I, a matronly, middle-aged golfer sporting my 28 handicap (not good) jumped into the golf cart with Daniel Belcher our young pro (zero handicap) who with his British manner of understating the obvious was confident that he would win some serious money:  he was in the top five on the leader board.  Off we went. We were playing with very close friends of mine, Asa and Anthony Marks.  No need for nerves; we had played together just like this many, many times,  our trip to the USA to play Pro-Ams had become an annual event. We had a lot of laughs, but today with some serious money at stake – with our pro a shoo-in – we were trying to behave.

We teed off and the gentle rain turned into rain gear on and umbrellas out.  I  think all was going amazingly well for Daniel.  Asa and Anthony teed off on the fifth hole and moved their cart up the fairway, waiting for Daniel and I to hit our drives.  I was suddenly caught with an overwhelming need to go to the loo as we say in London or in plain English ‘have a pee’.  It was a fancy course and I was convinced that the toilets would be locked with the same key as the key for the golf cart.  So I grabbed the key and headed for the ladies’ loo.

I ran to the toilet, the door opened without the need of a key, and the last thing I remembered was having a quick whish and flushing the toilet, and hearing the clink of metal on the toilet bowl.  THE KEY WAS NEVER SEEN AGAIN.

Which meant we couldn’t move the cart.

So here is the scene.  I’m in the toilet.  Daniel  is starting to blush and his mental state went ‘down the toilet’ with the keys.  This was a serious tournament and the PGA officials in their official suits arrived within a few minutes.   What they witnessed was Daniel looking down my trouser leg, hopeful that he would find keys.  They made their ruling.  As much as we would have like to have crawled back into the club house, we had to finish the match, trousers askew or not.   Needless to say, Daniel’s game fell apart.  Asa and Anthony were still standing in the rain befuddled.  We ended up driving off in the PGA official cart, leaving the officials to work it out for themselves.

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Luxuriating in a break from cancer: family, friends and food

Thursday, April 14, 2011 in chemotherapy, family, food, remission from cancer by admin | Add a comment...

My son came to visit from New York in the middle of a busy schedule and totally rejuvenated me. I started to feel that I could do something besides sleep and be tired, and that I needed to get out more.  He’s just written and directed an independent film called ‘Price Check’ with Parker Posey and Eric Mabius and is in the process of editing, but through the magic of new technology we managed to see a rough cut.  Of course I am going to say that it is a wonderful film, but it really gave me confidence in his ability and talent.  I will now try to live to see it in the cinema.

Price Check: Parker confronting Eric

There was a lot of business to be done during his visit: we saw an investment manager, a lawyer, my accountant, and a friend who will organize my funeral.  This wasn’t exactly what you’d call a holiday, but I was able to turn over to Michael a lot of my major problems. And it was such a relief; I feel very lucky to be able to rely totally on him, one reads so much of families not getting along.  I was a single hippy mother – the odds were not in our favor.  He  remembers little of his childhood except that a lot of people ‘hung out’ at our house on Miami Beach and that of all the druggy, political types the Buddhist phase was the worse for him,  Meetings that were full of people chanting, ‘Nam yo horangi yo’ must have been tough for a seven or eight year old.

That was the business side.  For fun, we went to several of my favorite new neighborhood restaurants, but the best nights were spent at home watching Mike’s film, when he made supper for me, which in itself was restorative.  I find something special in my son’s cooking.

The whole experience of being at home, watching a film he made, eating a dinner he had cooked for us, made me feel proud and gratified, and excited for him and his future.  We have done some kind of turn around and now he seems to take care of me.

The last four days reinforced my decision not to have more chemo. Just think: if I had been full of that poison, really sick, I wouldn’t have been able to concentrate on meetings, or the film; or enjoy any food; and no doubt I’d have been in bed all the time.  It is again the idea of false hope (even if you just never know whether it is really false), but there’s a lot of it around, there’s no doubt. I prefer to keep my wits about me, to be realistic, and to face things the way they are.  And most of all, to keep enjoying a really good meal. I think all my money is going to go to expensive restaurants, can’t see buying clothes anymore.

Soon after Mike left, Sweetpea arrived (my friend who had come with me to the Truffle Festival in Alba last October).

The way I feel now is that – I feel normal now.  This is very strange, as I’m on heavy morphine, and steroids, which is not normal.  It’s bizarre to feel normal, but there it is.

out to Dinner with Sweetpea

Sweetpea and I are foodies, and I wanted to take advantage of it while she was staying. I called for a lunch reservation at Dinner, Heston Blumenthal’s restaurant at the Mandarin Oriental, and was told that the list was closed for three months.  I persevered and got through to the dining room where I was waitlisted for Mothering Sunday.  Dream on, I thought.

Sunday came and Sweetpea and I were half way out the door when she suggested we check the waitlist.  Amazingly we got a table and off we dashed. We were bemused to be given a lovely table overlooking Hyde Park.  The service was impeccable, but the young man who delivered the bread had a shaking hand.  It was as if he was doing a solo at the Royal Opera.  It must be something of an honor to have even the lowest level job at what has got to be one of the finest restaurants in – London? Europe? The World? Who can say.

The menu is made up of historic British dishes (1500-1900) transformed to modern British tastes.

'Meat Fruit', strange but succulent

My starter was visually stunning and delicious.  Called Meat Fruit, from 1500, it was a chicken liver pate shaped to form a mandarin orange and dipped into a mandarin gel.  Try that at home. I can’t remember having such a succulent taste sensation.

Sweetpea had two fat duck legs, Powdered Duck (1670), for her main course.  This is not a minimal menu.  The portions are generous and rich.  You won’t leave hungry.  I had a large delicious Black Foot pork chop (c.1860).  I think they ate well in those olden days.

Still, we managed dessert.  The signature dish, Tipsy Cake (c.1810), was a drunk brioche accompanied by spit roast pineapple; my friend went for the Chocolate Bar (c.1730) – any restaurant in London would have been happy to serve this (c.2011).

The expense of the meal was not of overriding importance.  It felt like we had been treated to the best of everything.  I was impressed that we got taken from the waiting list.  I get sick of having to be ‘Someone’ to have an ordinary Sunday lunch at the Ivy.  We were treated beautifully from beginning to end, never rushed. It also is quiet … hurrah.  There is something honest about the food: the joy of the best ingredients cooked perfectly.

I may not be in a remission, but whatever I’m in, it allows me to have some special days and special experiences, to treasure my family and my friends and our times together.  As long as I don’t check my bank balance all will be just fine.

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