cancer treatment

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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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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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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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A Valentine’s Day resolution: Dress up for the Hospital

Saturday, February 6, 2010 in Decisions, delusions and befuddlement, Uncategorized, medical care by admin | Add a comment...

DSC04352

Would you give this woman drugs? I didn't dress for chemo. I got turned away.

I had a revelation today and a resolution followed. I have to look well to have well-person treatment from the hospital staff.  I’m slow on the uptake. It took me two years into my three-year PhD to realize that my ‘hippy’ long dirty hair and jeans were not speeding up my degree in Education.  In this case my sleep wear is morphing into my ‘going out’ clothes and it is not getting me anywhere medically. Today, just as in school, I decided to turn over a new leaf.  Let’s call it a belated New Year’s resolution. I have to pay attention to my grooming, even though it may compromise  my  first priniciple, ‘be comfortable’ . Maybe I’ve taken this too far because there is a blur between my sleep wear and my going ‘out’ clothes.

I woke up yesterday during chemo. to the reality of the situation that how you look gives hospital staff from cleaners to consultants a clue to your health and if they believe you are seriously ill, they treat you accordingly, which may mean they don’t treat you at all or that your treatment takes longer, while they check and check and check. This is how I arrived for chemo for two days running. I wore some comfy trousers that I could have easily slept in. (I’m not admitting whether I did or not) My hair has fallen out to the extent that I should wear my wig or a proper scarf, but, what the hell, it’s 9.00 and I’ve not slept well, why not throw my long wool everyday scarf and forget it.  No makeup. Voice still an even dimmer whisper, if that is possible.  And, on my first visit, I arrive, limping, and arriving on the wrong day giving more proof that my mental state was deteriorating, too. Usually they would have scrambled around and given me my chemo a day early, especially since the blood tests had been done and were all right. They looked sideways at each other and said, ” I didn’t look well”, and they should postpone treatment until they spoke to my oncologist at the end of the day.  I still didn’t get it, but based on how I looked how could they think otherwise? My oncologist has dropped subtle hints’ that dressing up a bit might make me feel better. (We are very close friends; she is allowed to say that). Later that day she sent an emergency text saying that she would do a ‘house call’.  It was the time I was having my toes taken care of so that I wouldn’t limp, and I couldn’t make the meeting. She told them that chemo could be scheduled for the morning if I was up to it.  She understood that if I was out of bed, I was just looking my normal messy self and in this case, it was nothing to worry about.

Not yet  ‘getting the message,’ I repeated my performance of day one, sloppy trousers, same top, same, same.  The staff again looked worried.  “Have I seen my oncologist recently?”” I walk in and a friend who I hadn’t seen in daycare before came up and had to remind me who she was.  I’m terrible when I meet someone out of context.  She .too. was here for chemo. She looked amazing.  Well dressed, hair perfect, make-up also natural and beautiful, and neat, neat, neat.    She has very serious cancer and has not been too long out of a long hospital stay. I know she is a very private person and doesn’t discuss her cancer. She conceals it well.  She sat down and got her chemo within a few minutes.

While the staff dithered about the safety of giving me chemo, I waited.  I had to wait for the doctor in charge to give his OK and then wait as the nurse tried to puncture my tired veins looking for blood, so that the tests could be repeated to make sure. She tried four times and then called the senior nurse.  All this fuss to send yet another blood sample away for tests. This added an extra two hours to my four-hour stint.   Still I didn’t get it.

Another woman who has had a really tough time with cancer came in and sat across from me with her lovely husband.  She also looked well-groomed and attractive.  She moved through her treatment without problems. This is when a light bulb went on in my head, I GOT IT!  No one wanted to take the responsibility of giving a disheveled, sick-looking person chemo. If I were as sick as looked, I might collapse or whatever.  The senior nurse came over and apologized for having me wait but said she wanted to be very careful because I didn’t look well, although the tests were all right. At that moment I made my resolution. My resolution is to dress ‘up’ for medical procedures and meetings with doctors. I will spend at least a half-hour dressing.  w

What I will do with this time, it now take five minutes, but I will try.  Finding earrings will take about ten minutes of that time, locating my lipsticks aother  five minutes. Motivation: I can cut my chemo to four hours from six hours. It is the first week of Feb. I wonder if I’ll keep this resolution until March. I do love my comfy trousers and I hate ‘dressing in the morning’ when I actually don’t feel up to much. Will I find a middle way? . .

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Optimist, pessimist, internetist: which ear is listening?

Saturday, January 9, 2010 in Decisions, delusions and befuddlement, cancer prognosis by admin | 1 comment

rman5890lWhen it comes to a reality check on cancer, doctors can’t or won’t tell you what is happening. You have to search for it. Recently, I’ve been researching my medical situation.  My oncologist is very positive and says things like, ‘We hope you will be around for many more years’.  My surgeon takes another view. He says, “You’ve lived 13 years with cancer, you should have been dead in six’.  There’s only one place to go, the internet.  There you can find the statistics and also become fatally confused.

One way to find out what stage of cancer you have is to look at websites and then check with your oncologist. I checked on the internet and then with her. I’m at stage 4, but she’s treating it like stage 3C, operative.

If you’re an optimist, the statistic that only 20% of the population with stage 4 cancer live for five years, will make you happy, assured that you are one of the 20%.  So you look a bit further.  What about people who have stage 3C or 4 who receive taxols and Avastin (a new drug which is delivered like chemo, but is not chemo)? People who take these drugs, and I’m one of them, get another few months.  If you’re an optimist you’re thinking,’ great, maybe I’ll defy the stats and have four more months’’.  And I take Amimidex –another month?

So it’s back to checking with the doctors.  If you think you’re going to get an answer like, ‘the chances are you’ll not be here in four months time,’ then  forget it.

I’ve been told that the doctors in the USA are more pessimistic than the UK.  I don’t believe it.  I chose my oncologist because she’s positive.  She goes for the strongest treatment available and hopes for the best.  I have to say though, that she’s not as positive as she used to be, but she sticks with the program.

According to some  stats then, I’m dead. Yet I still have to cope with today.  My  positive self directs that I have blueberries for breakfast, chard for lunch and salmon for dinner. I might need that extra fifteen minutes  they promise to  tack on at the end of life.   In the UK at this point, we make a cup of tea. But what kind of tea would I make? Mistletoe which might increase my life span by 5 minutes, or should I try green tea, 14 minutes. Oh what the hell, I’ll just have a double espresso. I turn off the computer, listen to something stupid like Dolly Parton and make   ‘builders’ tea’.  (Regular tea in UK with milk and sugar)  Another great day!

Optimistic, pessimistic or internetic; doctors speak to you and then you log on.  Where is reality?  I think you find out more about yourself than your condition.

“Reality is that which, when you stop believing in it, doesn’t go away.”  Philip K. Dick 

 

 

 

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