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Doing the cancer-wait-wait … and more wait

Monday, June 21, 2010 in Decisions, delusions and befuddlement, Uncategorized, cancer prognosis, medical care by admin | Add a comment...

Everyone talks about the traumas of the cancer treatment itself, but let’s take a few minutes to think about the trauma of waiting… think World Cup results being postponed for a week after you have watched a game under tension; think having to wait six months for a letter saying you have passed or failed your driving test; think waiting for a kettle to boil; and then you will understand the last few weeks of what is known as my life with the c. word.

I have done the rounds, the surgery, the radiation and chemo. Yet the MRI has shown the cancer cells march on fiercely holding on to a few centimeters of my body’s territory.  Their tenacious nerve fibers are buried somewhere in my chest and under my arm.  Just a little over one centimeter across,  the size of a healthy leech, they no doubt learned their methods in the primeval rain forests where leeches and cancer cells must have marched together in a war against a stone age population.  Perhaps the cancer cells survived by burying themselves deep in bodies, while the leeches hung on to the skins of their victims.  If only we could burn the cancer cells off like we can leeches.

Off track again, the present wait is about doctors wondering whether any further treatment is possible.  Can the cancer cells be dislodged from the nerves by surgery without causing a huge amount of damage, or could a cyber knife deftly radiate just the cancer cells.  In the last two years (the length of this last bout) I have mounted an attack against cancer with state of the art treatment. It is difficult to imagine a world where there is no more treatment available.  It feels like the troops are pulling out of the cancer war leaving the native (me) at huge risk.

I wait it out. Two more days until the PET scam (scan/scam. Freudian slip).  Just to remind ourselves, a PET scan is a radioactive examination where  a strange potion is injected and you can’t go near children for a few days.  I am slightly freaked out by the fact that my wait is blamed on the intergalactic machine, which is broken, and I am convinced that I will be the patient testing the repair.  You know the feeling, when you drive your car away from the repair shop only to turn around and drive it back when the strange noise recurs.  My worst thought is that it will develop a radiation leak.  I had all these paranoid worries when I went to sleep last night only to wake up this morning to read,  in an online article in the New York Times ['Americans get Most Medical Radiation in the World']:

“… Too much radiation raises the risk of cancer. That risk is growing because people in everyday situations are getting imaging tests done far too often.  [...]

Questions to ask about radiation scans:

–Is it truly needed? How will it change my care?

–Have you or another doctor done this test on me before?

–Are there alternatives like ultrasound or MRI?

–How many scans will be done? Could one or two be enough?

–Will the dose be adjusted for my gender, age and size? Will lead shields be used to keep radiation away from places it can do harm?

–Do you have a financial stake in the machines that will be used?

–Can I have a copy of the image and information on the dose?

[Dr Fred] Mettler suggests bringing a blank CD or thumb drive with you.

”You should have all of your stuff digitally on something,” he said. ”I keep mine on my laptop.””

I love these questions because two weeks ago when I had my MRI I was bombarded with irrelevant questions like ‘Are you pregnant?’  Now I have questions of my own.  Yes, many doctors have done many tests.  How many are you allowed?  At 70 I’m sure I’ve had too many.  My favorite in the above list is: “Do you have a financial stake in the machine?”  I’ll ask the first technician I see and I bet they say, “my job depends on it.”

I would love to bring a CD with me and get a recording of my examination.  It could record the technicians discussing their social lives or me lying in a tube with Frank Sinatra as background music.  But as to regulating the dose of radiation, I think I’m the last person who should have a say in it.  I barely know how many gallons of petrol I need to fill my car or how many kilos of anything feed four people.

When I finally got to the scan I needed to lie for an hour on an examination bed and wait for the radioactive stuff to go through my body.  I wasn’t allowed to read because engaging my eyes meant I failed the exam.

My ears were attacked by an hour of Frank Sinatra which was particularly irritating because I was trying to visualize myself laying on a sandy beach and drifting off to sleep.

My ‘funny bone’ has developed a cancer of its own.   My sense of humor gets darker and darker.  My friend asked if I could go to a concert in about a month and the response, “If it doesn’t interfere with my funeral” keeps popping into my mind.

Tomorrow the wait will be over.  My voice has come back and my hair is looking a bit better, I have more energy and my friends say that I’m looking well.  I walked out of my flat today and a very serious looking  Indian sikh stopped me and said, “you have a lucky face.  This will be a good month for you.” Moments like this make me love London – and who knows he may be right.

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‘The Killer Inside Me’: what I didn’t want to hear about

Saturday, June 5, 2010 in Uncategorized by admin | Add a comment...

My oncologist and I had run out of things to talk about at our weekly meetings.  She always does a routine examination, but our last appointment degenerated to a girls’ talk about semi permanent lipstick.

When I went to our meeting two days after my scan (MRI), I had no intuitive feeling as to whether my cancer had returned or not. Soon I realised that our girl talk was last week’s history.  She wasn’t having a good day and said in an astringent tone of voice that the results were not as good as we had hoped.

I don’t think I could take in what she was saying except to understand that the cancer had turned up again in the upper axilli of the right breast (the one that seems to attract all the cancer) and I had several cancerous nodes.

‘Uh oh,’ I said, ‘more chemo?’  I had my last treatment 8 weeks ago and was feeling wretched.

‘No I don’t think that is advisable.’  Good, because more chemo would knock my usual stoic expression off my face and I would be looking for daggers.

‘What about a trip to see Mr. Gui?’  He’s my breast surgeon, and I was thinking to myself, why couldn’t he just lop these nodes off, zip, zop.  It has got to the point that surgery seems easy compared to six more months of chemo with side effects.

We agreed on that. This time a cyber knife was suggested, because the nodes are all in the same area.  It wasn’t possible a year ago because the cancer was over a large area. The cyber knife is a targeted form of radiation and I secretly hope that a good set of  instructions came with the package. The danger with both these methods is that the nerves in my right arm will be affected and I may end up with a right arm that is even less useful than it is now. My right hand is gone anyway.  The chemo has left it partially numb and very tingling.  I sometimes feel that my mobile is vibrating and it turns out to be my hands calling. On the way out I mentioned that my cousin, who is a trustee of the Hemlock Society and a speaker on Final Exit, was coming to visit in a few weeks.  My doctor said in a lighter voice, ‘keep her out of here. We expect you to be around for a few more years.’ (I wasn’t joking, my cousin is coming from the states to visit.)

I left with a copy of my report to read when I was in a calmer state and when I had access to internet to look all the hard words up and really get worried.  I have stage 4 cancer and there is no stage 5 or 4 B or C.

After the news

The next days were problematic.  I had told people that I was having an MRI (see last blog) and I couldn’t keep the results a secret.  It was most difficult telling my family and friends.  I was beginning to have some good days, going to the theatre, movies even out of town, but they reacted as if I was sick again.  ‘Do you have enough help?’ ‘Do you have someone to cook for you?’  ‘Did you go on your own?’ ‘Did you really drive there?’ And even ‘I’ll come over right away’ whether it be a few miles or three thousand miles.  Is the end coming and I’m too stupid to know it?

I went to a friend’s mother’s funeral two days ago and reviewed the reality of my own situation.  First the taxi driver returned my tip with a look of condolence.  Then the train assistant at the entrance took me personally to the ticket machine to help me buy my ticket.  I guess with a beret covering my no hair situation and a tingling foot and bad knee I look like what I am, a cancer patient who is no longer young.  Depressing but true.

At the funeral, althoughI usually deplore such occasions, I found that I could almost understand the purpose of ritual.  This was non-denominational and they had somehow managed to keep the formally clad assistants to a minimum and there were no impersonal, ‘professional’ speeches.  It was a moving and meaningful celebration of a life and I thought a catharsis for friends and family.  We ended the day with tea at the cottage my friend had been raised in.  The next day they spread her ashes in the garden next to her favorite dog, a simple but loving act and true to her spirit and wishes.   Even though I have no particular love of dogs, I couldn’t hope for more.

To keep the funereal thoughts in check I spent the next few days going to see “Bad Lieutenant” and a comic opera at the Royal Opera house and trying to find some friends who still maintain a sense of humor.  Monday begins groundhog day (or week) because once again I see my breast surgeon, followed up by my oncologist.  It has a ‘been there, done it’ feel to it.

Settling final scores with the MRI machine and Nina Simone

Wednesday, June 2, 2010 in Uncategorized by admin | Add a comment...

Magnetic resonance imaging (MRI), or nuclear magnetic resonance imaging (NMRI)

Yesterday was MRI day: the final test of whether my Metastasis stage four cancer is in obeisance or growing like Topsy.  I’ve been to the screening center so often that they know me well.  I came in feeling like I hadn’t studied enough for a major exam and stayed out too late the night before.

I asked to use the loo several times. The staff rightly assumed I had the runs and notified the technician upstairs.  I thought they were being unusually sympathetic when, to my bemusement, the overly efficient secretary took away the longest form.  I thought it was because I had answered its questions the day before.  On that day two receptionists had called to confirm my appointment. Each one read out the questions (on the removed form) over the phone: did I have implants? Was I pregnant? Any transplants?  I imagine they ask you all this because the machine reacts like a microwave when you put metal in it.  Does it explode?  I hope so. I guess if I was the bionic woman I wouldn’t have been allowed entry to the examination room; an automatic failing grade.

It was only six weeks since my last MRI, so I couldn’t see how I could possibly have had time for a steel implant or heart transplant. Nevertheless, I responded to both calls. No allergies, no metal implants and at 71, no known or unknown pregnancy.

Now at reception, the form that remained to be filled in assured the company that they were going to get paid, and asked my address.   I’ve been at my address for five years and every time I go in they ask me again for my address.  It then repeatedly surprises me when they send everything to the old address, as if they copy the payment information and throw everything else away.  I wonder if the present tenants of my old flat have tried to play the CD of my MRI scan that must have arrived there, since I never received it.

When the long form was removed from my pad, I thought that common sense might have prevailed and they found the telephoned information.  NO.

A very lovely man led me upstairs and read the form to me again in halting English.   I gave in and answered all the questions about implants and pregnancy for the third time.  At the end of the interview, I asked him where the ladies room was and got a questioning look. After going through a list we came upon the mutually understood word of ‘toilet’.  Just in time.

I changed for the scan and realized I still couldn’t figure out the ties on the hospital gown.  One new query: the technician asked what music I wanted.  Would I like Frank Sinatra, or Nina Simone?  That is not a choice I’m given every day.  I wanted them to think I was young and hip and Nina seemed the best of a not very hip choice.

I could just see Nina herself walking out of the concert I was about to have, three hours of Nina Simone accompanied by the bangs and thumps of the MRI machine.  I watched her walk out on her audience when they continued talking and drinking after she sat down at the piano; but remembering her playing at the Showboat in Philadelphia dates me too.

Having given my ill-considered response, I put on the headphones and lay down stiffly like a corpse (no doubt practicing).  After a few minutes of bang, bang, Nina came on. What I didn’t know then was that she died on 21 April 2003 of breast cancer.  That was seven years and four days before I was lying in the MRI machine wondering what my fate would be.  Listening to her sing Porgy and Bess in that deep tragic melancholy voice felt about as funereal as one could imagine.  I wondered how she coped with her illness.

I woke up the day after the MRI with one day to go before my oncology appointment. I was emailed to ask if I could change my appointment from 3 to 4.30 pm.  I immediately thought my oncologist wanted more time at the end of the day to tell me bad news.  I couldn’t change the time because I had an appointment with an acupuncturist who I’d waited a month to see and who would try and help with my post chemo symptoms.  I still had a thread of hope that I would be myself again, whoever that was, that self with brown locks down to my waist, that weighed 9 and a half stone (110 pounds) and went to hear Nina Simone.  I think that me was twenty years old. This me needed to wait for test results, something that, over the years, I have become all too used to.

Nina Simone

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The Mad British Election

Monday, April 26, 2010 in Uncategorized by admin | 1 comment

Copyright ©Steve Bell 2010-All Rights Reserved (www.belltoons.co.uk)

Not hung, but guillotined.  Same result.

I’ve lived in London for 30 years and still cannot understand the election system.  We have a Prime Minister who was never elected. Tony Blair didn’t die of natural causes and was not assassinated.  He died politically the moment he went ‘to bed’ with George Bush.  And after finally reading his political obituary, he decided he’d rather go on a speaking tour and earn lots of money than be PM.  He exited stage right leaving Gordon Brown to enter very much from stage left.

After a few days of press speculation over why TB left when he did and why he gave the job to someone he apparently disliked, business in the UK went on as usual.  One guessed that his wife Cherie had gone to her clairvoyant (as is her practice) and been told the precise day he should quit. It was as good a guess as any.

What followed  was the banking crisis, the collapse of the British economy and job losses. And all that after a hugely unpopular war.  But this is a country that has survived war before, and being a resilient lot, the British persevered with the government they had.  Gordon Brown faced a hostile press and a disillusioned country.  ‘The people’ hated Gordon Brown, felt that Tony Blair had let them down and yet because they persevere, they do not necessarily vote for the opposing party. Labour voters switching to the Conservatives is like the American Democrats voting for Sarah Palin.  That is how committed Labour supporters feel when considering voting for David Cameron, leader of the Conservatives.

Then one day at the beginning of spring, Gordon Brown decided to call an election.  This is unimaginable to Americans.  How can the Prime Minister decide the timing of his own re-election, or indeed demise?  Does he do it at the height of his popularity or the lowest ebb of public disdain?  GB seemed to have chosen the latter.  Not to say that his opponent was a ‘shoo-in’:  David Cameron, too, was hated.  At the point the election was called, voter registration was at  a record low.  If people could have voted with their hearts, they might have been happy to throw the lot of them in the River Thames…

Now came the televised debates and the rise of the third party, the Lib Dems as they are called. The party no one took seriously, with a little-known politician at its head, Nick Clegg.  As an outsider, one might think that the Lib Dems are somewhere between Labour and Conservatives but no, there is so little space between the parties that a third party cannot fit in the bed between mommy (Labour) and daddy (the Conservatives).  So the baby ( Lib Dems) had to sleep in the cot, next to the bed, but not too far away.  If you can see the difference between the policies of Mom, Dad and baby you are doing very well.

And so the first debate came amid speculation as to how much help each of the candidates had from American debate coaches.  Nick Clegg, having lived in America and attended a Midwestern University for a year and worked in NYC had learned the American gift of the gab, or as we Americans like to call it, how to ‘express yourself.’ He didn’t need coaching to look relaxed and generally smarter than he was on the debating floor.  He became the overnight success story. In the USA this kind of popularity might have sewn up the election, but not here.

No one expects Nick to ‘win’.  That would be too simple. What they expect  him to do is ‘hang parliament’.  What a good idea, say the voters; what a bad idea say the two about to be hung (Brown and Cameron) .

After two more debates, and a week is a long time in politics, the small percentage of Brits who registered to vote will march to the polls.  So follow me as I go to the polls (which I won’t do, American citizens even if they’ve lived here for eons do not vote in foreign elections – why I don’t know, but it is certainly easier):

Here I am going to my constituency, which in my case is Central London.  I show my registration card and get a ballot.  The following names appear on my ballot

CANDIDATES

Name Party Votes % +/-
Mad Cap’n Tom Independent
Derek Chase Green
Dennis Delderfield Independent
Mark Field Conservative
Jack Nunn Pirate Party UK
Frank Roseman English Democrats
David Rowntree Labour
Naomi Smith Liberal Democrat
Paul Weston UK Independence Party

Uh oh.  If I was going to vote for these people why haven’t I heard anything about them? I like the sound of Mad Cap’n Tom, since I feel mad myself.  If I want to vote for Nick Clegg I vote for Naomi Smith, because she, then, will get a seat in Parliament and if the Lib Dems get enough seats Nick will win.  This is why no one expects Nick Clegg to win an outright majority of seats in Parliament.  They just want him to win enough seats to have a say in the government and thus be able to hang parliament.

In this case, the public will get what they were after, the politicians will not be drowned in the Thames, they will be hung in Parliament Square. That is the first thing that has made sense in British politics for years, ‘a hung parliament.’  Whoopee.

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Cancer treatments; Let’s make it look like we are making progress.

Saturday, April 24, 2010 in Uncategorized by admin | Add a comment...

Chemotherapy has become a major industry.  Not only because the drugs themselves are expensive, but also there are the side effect drugs, the radiation machines, and other gismos like the cyber knife.  Is this the way cancer treatment will be forever?  If it is going to move on maybe redesigning the treatment would give us cancer patients a boost.  Or would it?

Zaha Hadid might design a building like this to get our genes blasted

I walk into the day centre where people come for chemo from all over the world and I feel like I’m stepping back in time.  There are subtle changes, the drugs have definitely progressed, but the delivery is the same and the side effects complex and not easy to manage.  Maybe if the  day care centre looked more 21st century new age medical treatments would follow.  A room designed by Zaha Hadid; reclining chairs by Ron Arad; a  few Damian Hirsts spotted around…  might inspire, say, genetic manipulation centers to replace chemotherapy.

My heart is in the right place

"The drug company that owns the genetic cure brought these for our new age center, to show their heart was in the right place"

worst of Milan Furniture Fair 2010

It would be lovely to be given a designer bag like you get first class on airlines with ‘flight pajamas’ and nice socks, a blindfold, ear plugs, an iPod, an elegant pill box, a Smythson diary to note your side effects,  and, of course, a designer vial for your urine sample, and one for sputum if needed.  Also we’d need a menu for a lovely lunch, and maybe an “In Chemo” magazine.  The most important thing would be a monitor for watching movies and a good list of movies. First class travel; first class chemo.  And surely, being in England, we need a ‘tea lady’ to roll around offering lovely tea and biscuits (not the machine we have now).

Where would all this get us?  I honestly don’t know.  One still goes home tired and after all the initial pills wear off, sick with some kind of side effect.  I don’t really mind the ‘old-fashioned’ daycare centre.  I get a nice lunch served and allow myself a fill of not very good biscuits.  The staff are always positive:  they know me as soon as I come to the door, and I get a big welcome.  I used to bring a DVD player, books and an iPod and now I just bring a book because after lunch I fall asleep until the treatment is over. I go home woozy from whatever sleeping stuff they give me and usually have to see my oncologist in this condition.  Then I go home, tired for about three days, except that I sometimes can’t sleep at night and then the pills run out and I get periods of sickness.  So it goes. No designer bags will help with that.

Love to hear from people who see it differently or would like to add to this.  What are your experiences like?

Now lets re-think radiation.  First we need something to watch while we are under the machine.  Perhaps we should call James Turrell (the wonderful artist who does fabulous light works)?  Or should we put in a video?  I know they like to be able to speak to you so it might have to be soundless.

Once the machine starts rolling they need to sort out the sound it makes.  Perhaps a video that went with the sound would make it a post modern experience and transform the bleeps into something more acceptable if not less frightening.

There is something scary about the way the attendants run out of the room, perhaps they should skip and dance out or wear a brightly colored coat (not heavy black rubber or whatever it is);  and  I don’t know what to do to make an uncomfortable position more comfortable.  Any suggestions?

As to the operations,  I had three about eighteen months ago and I’ve blocked them out.  I have never understood why you need to be awakened for checks all night, but so be it.  I learned that I hate morphine, but maybe that is just me, some people, not far away from my flat, actually go out of their way to inject it.  I had a terrible nightmare with it in hospital and thought my head was coming off.  And I hated losing my voice.  But in general I got good care and two out of three of the operations (Breast and neck) went so well that I don’t remember much.

I did have drains in, which I went out with, I can’t believe I did that, but I did.  Maybe drains could be redesigned so we can wear them as a piece of jewelry, the drip looking like a lava lamp.  I hope I just went out among friends.

Can anyone think of a way to redesign cancer treatment?  Let me know.

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