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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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Searching for Nirvana

Wednesday, May 19, 2010 in Decisions, delusions and befuddlement, food by admin | Add a comment...

In my quest to renew myself after two years of cancer treatment I signed up for four days at a fancy heath spa outside of London. It seemed like such a good idea at the time. When I last visited it had been going through a Japanese period, but this had all changed in favor of commerce. Now hen parties were accommodated, and business groups attended week-long wellness courses and fitness training .

An elderly nanny checked me in and a retainer took me to my superior room.  It was lovely, overlooking the garden, and I decided that bed would be my first choice for activities. I tried the TV and it had twenty channels; ten were in Arabic. The ten in English looked promising, but within five minutes I broke the TV and could get no channels. Then I tried the bath that had amazing water pressure, unknown in the UK, but I couldn’t empty it.  When I finally left the room and returned, the key no longer worked. Superior rooms need superior minds.

I had arrived too late (by five minutes) for lunch and I was directed to the busy new snack bar.  I found that whoever dreamt up the menu thought coping with stress, not trying to diet, was foremost in the residents’ minds. I tried to find something healthy and ended up with a carrot and hummus wrap, followed by an oatmeal cookie.  I decided not to worry about health if it was going to be tasteless.

Chemotherapy had left me in need of a facial.  So I signed up with the nanny receptionist and I waited and waited for the therapist while lots of twenty somethings in white uniforms who looked like spaced out aliens walked past me. Naughty me, I was in the wrong place. Finally, my very own twenty something showed up.  I made the mistake of telling her I was just finished with Chemotherapy.   I thought she might run out of the room, but I could see her mentally reviewing her instruction book.  She said that if I had cancer I could not have massages BUT IF IT WAS TERMINAL, I could do anything I wanted. I hadn’t considered this as a ‘final exit’ possibility.

That evening I decided to brave the group table and I was treated to a long discourse on how to cure my laryngitis. (A paralyzed vocal cord caused by cancer.)   At the end of dinner, I must have got tired and cranky and after telling the waitress that the cod was cold and had bones in it, I confessed to my companions that I had cancer and that I didn’t think lemon tea and ginger, whiskey or lemsip would help my voice.

When I found out the next day that my dinner companion, who I assumed was a wealthy client, was a blind diabetic who was illiterate, I felt badly.  She had been brought up south of Naples in one room with an abusive father, a goat and a sheep.  She was kept at home to work on the farm and never sent to school. At eighteen she was sent to London as a maid and worked for Clement Attlee’s family before he became prime minister. Now she comes to the spa twice a year and is treated like royalty.  I believe the owners have a charity, which provides for this. It made me feel more positive.

I decided to keep quiet about cancer and try the Thalassotherapy pool.  I had a swim in my warm dream pool and my ‘spaced out therapist’ turned on the strong jets and started chatting with another therapist.  I tried to climb up to the jets and started to slip on the steps.  I didn’t fancy drowning, so I kept safely near the edges. By the time I got used to the pool, the therapist paused in her chat long enough to say it was over.  It was an expensive 20 minute swim; I think the therapists take their revenge for what must be low paid rather boring work.

Next I met the chiropodist where I was able to relax and almost fall asleep. I woke suddenly when the point of her scissors stabbed my big toe.

I thought my Pilates workshop had gone well, but I was gently told that I wasn’t ready to exercise yet and I needed to do some walks first. Since I had trouble walking to class this seemed wise.

Having nothing to do on the last day I went to a clairvoyant.  That was as surreal as it comes.  My father’s spirit came into the room and after he told me how terrific I was gave me a trophy.  When I was back home I was reminded that my father had died on this day eleven years ago.  I have no belief in the spiritual world but that was about as strange as it gets.

I spent the last few hours in the drawing room reading an Agatha Christie mystery and I left just in time before Miss Marple found a corpse and had to call the nannies in for questioning.

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My day at the races: Cancer treatment turns into a farce

Tuesday, March 9, 2010 in Decisions, delusions and befuddlement, medical care by admin | Add a comment...

A Day at the Races

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Doctors recommend doctors, who recommend tests and more tests, and drugs and more drugs, and at the end drive you crazy and you need to see a shrink. I feel I’ve set a record last week but I’m sure it is just business as usual for the medics.

My oncologist, also now a good friend, rushed to my flat thinking I had taken a turn for the worse.  She put me in the hospital for tests and antibiotics.  I was visited there by and ear, nose and throat specialist from another hospital. I saw a parade of  ‘on duty’ doctors, two speech therapists, several radiologists and a partridge in a pear tree.  The bird was most helpful, although the doctors did their best.

Out of hospital, I was free to see doctors in several clinics.  I ran to see a Professor for a swallowing test and then another expert for a lung function test and of course the chemo doctor.   Then the ENT doctor recommended a gastroenterologist (reflux) and my oncologist recommended a substitute doctor while she went to a game farm in South Africa, and I saw them all, too.

Because this was also the week my super port that delivers my chemo packed in, I stopped to see the nurse in charge of daycare. Natalie recommended I see a radiologist and a surgeon. The joke was that the surgeon who had put the port in thought I should have called him immediately when a huge black and blue mark erupted on my neck. Was he kidding? Would I want to worry a doctor? Did I want to see another doctor? I was sure it was markings from a necklace, not a leaking port.

My Monday at the races; Act one

And so the week began and I starred in a farce played out across the clinics of the world-famous Harley Street.  Think Groucho Marx when you think of me running from one clinic to another:  if I could have only kept my hospital gown on as I ran from doctor to doctor, clinic to clinic, the picture would be complete.

That morning I had two appointments that multiplied and became four and then six before the day was out.  I woke up at 6.30 with a start, fiddled with wig, took a bath and realized that I couldn’t find my car key.  I only have one because I lost the other.  I searched the flat unsuccessfully for the key and realized I had to run to my first appointment at 9.15. I actually do not run, I waddled to Harley Street and was nearly run over by a six-foot mom wheeling twins to nursery school.  She deserved a speeding ticket.  No one has patience at 8.30 in the morning.

Act two

I arrive safely and early at Harley Street clinic and go to reception.  Because of my voice (which is now speaking in whispers) and the fact that English is everyone’s second or third language, they cannot find my name or my doctor’s name.  When they do, they telephone him on his mobile, which does not work in the basement where radiology is planted.  Of course, I have no idea and I wait. My next appointment creeps up. It is at 10.40, about ten minutes walk down the street. I start to get nervous.

I’m then directed to the daycare centre where they will find the doctor and have him pick me up there.  It is now nearing 9.45 and I have my next appointment at the competing London Clinic.   I’m definitely nervous.

In the daycare centre, everyone is welcoming and the search for the doctor begins in earnest.  At 10.10 the assistant comes up and says the doctor has been waiting for me since 9.00.  I am told to change and he will do the procedure. I’m so nervous by now that it becomes apparent to everyone around me.   The Asian assistant suggests that I meditate, sit quietly in the examination room and relax my mind.  Not a chance.

It is 10.15 when the doctor finally arrives; I have not relaxed at all.  I accost him with my problem.  He, by contrast, has clearly done his meditation and in a relaxed way suggests that I change, go to the appointment at London Clinic and return to see him before lunch.  Great!  Problem solved.  No! The farce is just beginning.

Act 3

I change and do my ultra fast waddle to London Clinic where a huge cancer centre is being built, which makes the area unrecognizable so I can’t even find the front door.  In a panic, I run around the building and there it is, where it has always been, but looking incongruous among new buildings.  In a semi panic, I wait to see the doctor.  I conclude from my investigative peek at the receptionist’s diary that he books every 20 minutes and his next patient is early. I feel I’ll be able to return to Harley Street before noon.

Dr Anley is nothing if not thorough.  He asks simple questions that I can’t answer.  Luckily I brought some notes or we would have got nowhere. He seems to understand why I’m coughing continually and getting sick so often.  He suggests that I have a gastroendoscopy that afternoon at 2.30.  Since I haven’t eaten all day I’m in great shape for a full anesthetic.  It will take two hours and I will be finished at 4.30 in time to meet my friend at the Odeon Covent Garden to see Single Man at 6.00.  She is coming from afar and I want to see her.

Act 4

Back at Harley Street, I change and get my linogram.  That is almost like an ultrasound of the power port.  I can see my power port clearly: it looks like all the wires in my life, TV, phone, computer, electric blanket; twisted.  Nothing could pass through the tubing since it now has the bends.

The radiologist gives me a frightening lecture about what would happen next and ends by asking if I mind them going through the groin to fix it.  Do I mind? It is time for Grouch never mind Groucho Marx. I have no idea if I mind.  Because of my state and the way he asks I was certain that the groin meant vagina and I panic.  It took several days to figure out where the groin was located.

Act 5

Now I had two hours left and could not eat or drink. I decided to waddle home and look for the car key and take a power nap.  No car key, short power nap, and I waddle to London Clinic.  The anesthetic fully knocked me out and I slept for the whole procedure. I woke up wondering if he has done it yet. He gave me some more medication and said something about the anesthetic passing through my system quickly.  Not giving this remark a moment’s thought, I took a taxi to the cinema, arriving an hour and a half early.  I decided to go next door and shop at the amazing catering store for chefs.

Act 6

As I wandered through the store I embarked on an imaginary redo of my kitchen, but suddenly the anesthetic passed through me and I ran madly to the cinema toilet. I didn’t exactly make it.  So I cleaned up as best I could and took a taxi home to change my clothes.  I feel no shame revealing this because others with these side effects will understand.

I went back to my apartment, changed and returned to the cinema by taxi to see A Single Man.  I had just read the book and could not figure out how Tom Ford could ever make a film out of it.  He added some things that worked and others that didn’t.  My friend and I agreed that there were a few designer touches too many.  Changing his lady friend from a hippy chick to a designer-clad aristo was one too many for me.  I needed to go home after the film and my friend understood. (That’s why we call them friends.) What a day!

The good news was that I made chicken soup the day before. I needed it.

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The Hospital: A kvetcher’s paradise

Sunday, January 31, 2010 in medical care by admin | Add a comment...

image1The next person who says, ‘you look tired’ I will personally murder.  Or course I look tired.  I’ve been in this hospital for a week with three blood infections that have names I didn’t write down for fear I’ll look them up on The Iuternet and scare myself to death.  My living will doesn’t cover throwing my hands up in vain and shouting OUH VEY .  When I last checked this was not a beauty farm although it is the Harley Street Clinic and in the area there are hundreds of Botox and plastic surgeons.  I’d give anything to be with one of them, but I’m here, looking tired. I’ve been on three different antibiotics and have a nebulizer, oxygen, and whatever is trying to make me look less tired and not succeeding.  Also my hair is falling out in handfuls, slowly and torturously.  Look tired, no, I look like a wreck going somewhere to happen.

The hospital is a kvetcher’s paradise.  If you can’t find anything to kvetch about here you should give up you rights to complain.  From the moment I put my foot in the door things to complain about flowed.  No bath in my first bedroom and a large hospital chair sat in the middle of the shower.  The first thing the officious nurse did was to rummage through my suitcase and take my drugs.  Then the doctor on call ‘borrowed’ my drug list and went off with it never to be seen again; well it was only the first hour of the first night.

I won’t go on day by day, but one can complain in general.

1.     Being woke up at 5 in the morning for antibiotics.

2.     Having your blood pressure taken every hour or two. Does it change that much? This is the one I can’t understand. I think the robotics people at Imperial College London are working on a robot to do this. Hurry is all I can say.

3.     Nurses that make the blood pressure cuff so tight you could easily scream and defiantly should scream.

4.      Nurses who forgot half your medication and disagree when you tell them they’ve forgot.

5.     Never enough blankets.  Is this a developing country? Asking for an extra thin blanket is never easy especially when you really want two extra blankets.

6.     Pills you are supposed to take left in small containers next to your bed and you come across them the next day.

7.     Twenty five to thirty year olds who trained to be speech therapists and physical therapists by memorizing the book.  They look like something out of “Mad Men/,” dressed to the height of office protocol.  High heels, sensible dress (translate, boring) or suit, make up perfect, hair perfect you already hate them and they haven’t opened their mouth yet.  One such speech therapist and I are going to come to serious blows.  Instead of admitting that she never did a proper swallowing assessment, she surreptitiously showed up during lunch the next day, no doubt to watch me swallow.  She kept insisting that I was perfectly all right.  Fortunately, I have a more experienced speech therapist with some authority who sorted everyone out in no uncertain terms.  I won’t go in to details.

8.     Nebulizers that go over your nose and mouth are to be kvetched about.  They are never given at the right time.  The noise interferes with TV; it wakes you up just as you are drifting off, and greets you at 6.30 in the morning.  AND nurses leave it on and say they will be back in ten minutes.  Ha.  They never come back unless you call them and it is difficult to figure out when it is finished.  After several days I asked how you turn it off. Now after ten minutes, off it goes, I have to get out of bed to do it but it is worth it and after ten minutes of whirring I’m fully awake anyway. I tried to close it off a few days later and it exploded. (Maybe best I keep my hands off of it.)

9.      Now this is personal.  Disposable underpants.  The ones they supply in the hospital are diapers.  I don’t know how long it is since you’ve diapered anyone, but pampers are a long way back in my history. I was faced with a complex diaper, half asleep, and wondering when I could lie down again. I found a friend who found some proper disposable underpants that look like they are supposed to look.

10.  Within sight I have Wolf Hall (Hilary Mantel) with only 100 pages left to read and about 10 other books, DVD’s and my blog to write and I’ve felt too tired to do anything.  It is worth complaining when you have no other symptoms besides tiredness.  There is nothing to get your kvetch into like vomiting (well you know the list).

Now that I’ve had my Kvetch I feel better,  Of course the staff here is very good and the care excellent, but I kvetch to visitors and to myself mostly.  I think it is therapeutic. Since I have no voice only a whisper and English is not a big first language around here, I don’t do any real damage.

Anyway, Chemo is cancelled and I’ll be here another week. Today is the first day I’ve felt able to blog, so I will try to keep it up.

"Have any cards for someone who's just kvetching?"

"Have any cards for someone who's just kvetching?"

Another Kvetch, they didn’t find my Advil PM supply.  Like any good American I managed to get Advil brought in (it is illegal in the UK) and NO ONE WILL EVER GET MY ADVIL. (Don’t worry about addiction; it is just my security blanket.)

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Nasty side effects up for discussion?

Sunday, December 6, 2009 in Uncategorized by admin | Add a comment...

This is what we need one big superpill for C, D and N.

This is what we need one big superpill for C, D and N.

Does anyone out there have the balance right?  We need to talk about this.  D and C (not the usual D and C, the cancer one):  Diarrhea and Constipation are what I’m going to bring out in the open for discussion.  I, for one, can not get the drugs right.  Too much anti nausea medicine and I have painful C, too many laxatives and I have horrible attacks of the big D.  I think what happens is that the first three days after Chemo I come home with pills that seem to work, but you can’t take forever.  I take Aprepitant, Dexamethoasone and Ondansetron for three days.  Everything goes well, more or less.  Then I realize that I need to take something for N(nausea) and C, in particular.  Then it starts going wrong.  Every time I think I have the balance right, it isn’t.  I have a hard enough time remembering if I’m C, D or N.  I think I’m going to reprint the side effects cartoon. That says it all.

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