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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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Final Check list before you check out: hospital stay

Tuesday, February 2, 2010 in Decisions, delusions and befuddlement, cancer prognosis by admin | Add a comment...

I’ve become the kind of person who checks for keys ten times before I leave my flat and at least once after I leave. On the evening when my oncologist made a home visit and hospitalized me, I began a new kind of checking. (The fainthearted might not want to read this.)  Had I actually told anyone that I wanted to be cremated? In my demented mind I think there must be more than two choices; burial or cremation. I guess one can be frozen, well I don’t fancy it.  A choice between two things need not be difficult, but somehow it was.  I was immersed in ‘Wolf Hall” about the 16th Century and Cromwell and it seems quite normal that we should have the option of being hung in Trafalger Square.  Perhaps as an artwork on the fourth plinth It would be better than most of the work shown and would attract the press. I wouldn’t have to worry about who would come because the tourists would throng.

I don’t want a religious ceremony with someone leading it who I have never met\and those weird looking pall bearers who freak me out.   In fact I decide (still on the way to the hospital) I only want one ‘event’ and it is quite simple except that I haven’t told the person in charge of the venue what I wanted, because until that night I hadn’t made any plan.   Formulating this checklist, the next item was who would need to be contacted, how many would come, would someone say something, what?Was I so much of a control freak that I would have to write the eulogies or order people to say something. If I had a luncheon, who would be invited, and more and more items became additions to my checklist.

Where would the ashes go? I think this checklist will be the last thing I think before I close my eyes for the last time.  I couldn’t believe how involved it all got and all the details I had never would have thought had I not been on the way to the hospital.  I always assumed doing a will and a living will were enough. Now feeling truly horrible and sure that I was facing the end, all these things flooded into my head. They say that facing death your life flashes by but I’m convinced I’ll be checking and checking and checking until my last breath.

There are other things to check as well.  Every time I have cancer I give away or give to charity as many of my things as possible.  Then I spend the next years looking for things and wondering , “Have I or have I not given it away?”

I feel I’ve accumulated more  stuff  during my last cancer remission that needs to go.  But not the night, I am on my way to the hospital. That is too much to think about.

I’m adding to this list ten days later.  Now I feel better and I’m going home tomorrow. From this vantage point, all this looks like a to do list for some other time.

Reminders keep coming in. . Yesterday was tax day in the UK and that brings on worries about how what little I will no doubt have left be distributed or do I just split it between US tax and the British Tax and call it a day. (Yes expats pay both)  Instead of big questions I spent the day trying to pay my tax on line and eventually succeeding.

In the mist I had to call to check if I had money to pay the tax and Barclays (the worlds most hated bank) locked me out of the online banking system and forced me to call on the telephone.  As most readers of the blog know I cannot speak above a whisper and calling a Barclays call station in India was extraordinary.  “What is wrong with you?” the operator bellowed  in a heavy Indian accent, over a noisy background.  “Do you have a cold?”  No, I whispered back “I’m in hospital and I have cancer’  What?  Cancer? What C- a –n-c-e-r, I spelled.  It went on like this for 30 minutes, during each security question.  When I finally finished she began to tell me in detail how to log on and when I did log on they had taken the money out of the account but had not itemized the deduction in the statement. Useless.   I will never call again, so I just hope it is all right.  If not, I might go right from hospital to jail.  I won’t miss a beat.

This is what comes of too much checking!

Check the guests to make sure they will have the 'correct' state of mind! Almost forgot!

Check the guests to make sure they will have the 'correct' state of mind! Almost forgot!

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Stew over stew: Dinner for a friend

Saturday, January 16, 2010 in Decisions, delusions and befuddlement by admin | Add a comment...

High table at Oxford- MY TABL£ NOT!

High table at Oxford- MY TABL£ NOT!

I woke up in fear – I was having just one dinner guest but it felt like I was having a dinner party for 8 to 10. Because of Chemo I haven’t had anyone for dinner for a long time but I needed to get over the impasse. I’ve lost the use of a vocal cord and can’t speak above a whisper, so restaurants are proving difficult. I emailed my cousin who is on Chemo, holding down three jobs and still cooking for husband and children when they are home from college. She sent me a fabulous recipe endorsed by her sister, who hates cooking.

Chicken Marabella

16 pieces chicken (thighs work well, I used six but the extra sauce was great)

1 head garlic, crushed

1/4 c oregano

1/2 c red wine vinegar

1/2 c olive oil

1 c pitted prunes or apricots

1/2 c green olives, pitted

1/2 c capers with some juice

6 bay leaves

S and p to taste

Combine the above in a big casserole pan or two casseroles.  Make sure the chicken is covered with the marinade and pop into the refrigerator.  24 hours later remove and pour over 1 c white wine and sprinkle with 1 c brown sugar.  Put in oven at 350 for an hour.

The night before was not good. Because I have the ‘can’t feel fingertips’symptom, I broke a jar of spaghetti sauce and dropped the dish I was making when taking it out of the microwave. The kitchen looked like a bombsite. I scrapped dinner altogether and went to bed. No marinating.

The next day I had Chemo and didn’t finish until 4.00. Two and a half hours to go. Ran past the wine shop and bought an organic wine for cooking and Petit Chablis for drinking. Ran home. This had to be fast. I have a tiny kitchen (London flat) and two stuffed cabinets. I had about six chicken thighs, but decided to make the whole sauce recipe. I now keep frozen chopped garlic in the freezer. I had some dried oregano. Problem, not enough red wine vinegar, threw in the balsamic (why not? Everyone loves balsamic). Had a can of pitted prunes (anyone on chemo will know why) and low and behold jar of capers (I guess smoked salmon at Xmas), and even found olives and bay leaves. (No breakage yet.) Threw everything in the direction of the casserole dish and banged it in the oven. Lay down and waited. It was five thirty and my friend was coming in an hour.

In she whooshed right on time. I should say, this was a bit of a rapprochement, because she hadn’t visited for quite a while. (Our relationship was a bit shaky.) She is a wine lover and began by telling me that wine that costs only 10 pounds was for ‘students’ (she is a professor at Oxford), not for friends. I didn’t dare tell her that the Petit Chablis was 10.99. She tasted both the Organic and the Chablis and settled on the Chablis. We spent a few hours over dinner and she seemed to like the chicken and drank a respectable amount of wine. It was going well.

When she got up to get her Oxford train, it was 9.00 and I was exhausted. ‘Well, she said, in her professor manner, I will stay longer next week.’ All I could think to say was, ‘This is fine; I go to bed very early.’

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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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Send invites to your chemo. or don’t?

Monday, December 21, 2009 in Decisions, delusions and befuddlement by admin | Add a comment...

images

Queen Holds Tea Party For 8,000 People. (But not for me)

(AP Photo / Anthony Devlin, Pool)

There are people who send out invites for friends to come with them to Chemo.  For me it is a four-hour process, sometimes longer and I can’t imagine having someone ‘hanging out with me’.  A woman in her 80’s wearing a cold cap to keep her few wisps of hair in place was regaling a younger woman with stories of ‘ the Queen’s garden party’.  That is a very popular topic among certain British women whose life has been altered by an invite. The story lasts for a whole chemo session.

I take a different approach.   I come it around 9 AM and I go through the ritual of putting hair conditioner on in the bathroom for the cold cap, At 9-930 I move into my reclining chair, plug in my DVD, and get my book out.  The first 25 minutes with a cold cap are torture like being in the North Pole. I always order a hot lunch that I look forward to as it helps warm up the cold cap chill. This week onion soup, profiteroles, things look up.  The nurses look at me with pity reserved for people whose vanity exceeds their common sense and usually one asks if the cold cap is working.  I think the staff doesn’t believe in it and none would ever use it.  In sympathy I get a heating pad and blankets.  Then I make a coffee and help myself to several packets of something called ‘Bourbon biscuits’, (the British do not understand that all ‘cookies’ should be chocolatechip) By that time bloods are done and we are ready to roll.  I start with every intention of seeing a whole movie and reading a book, but they give me a sedative and find that bringing in my electronic paraphernalia was a waste of time.  I think I’ve watched one movie in four treatments.

The day care centre is not a fancy place.  The reclining chairs are comfortable but if you get up suddenly you end up being turned out on the floor.  The staff is fabulous, but don’t gossip, unfortunately.

I recently heard of a patient who has a Rota of friends that come visit.  I guess I could order a second lunch and get a second pair of earphones.  I’ll be there between 9 to 3 and the arrangements and phone calls that would go into this plan would be too much for me.  Maybe it is because my voice is gone and I can’t regale my friends with Queen tea party stories, having never been to one.  Actually I can hardly speak at all so visiting for a few hours would be a strain on everyone concerned. (Frozen vocal cord) Also, my friends are a busy lot and I don’t love them any less for having better things to do. I think staying away is a win-win situation.

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