confusion

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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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Survived earthquake against all odds.

Survived earthquake against all odds.

In disaster, someone found a way of coping.

In disaster, someone found a way of coping.

I don’t remember ever canceling so many doctors’ appointments in one week.  I just didn’t have the energy to go. It seems every time I go to a specialist he or she grows three tails in the form of three more appointments.  Yesterday I mustered up the strength to see a chest specialist. He is very thorough and I appreciate that, but he sprung his three tails, one for a lung function test today at 9.00 and I had to cancel, just not up to it, secondly for a speech therapist for a swallowing test and thirdly for a CT scan  and then, of cause, as always , a follow up.  I also cancelled a liver function test that I didn’t need because I get that with my chemo.  The chest specialist asked me if I had told my thoracic surgeon that I had problems with my speech since his operation.  Of course I had done the ‘follow up’ or had I?   Very quickly after seeing him I was moved on to the throat surgeon who referred me to a speech therapist .  I think I have seen over 25 doctors during my three bouts of cancer and I don’t shop around for opinions. It seems doctors beget doctors  beget practioners beget pills and potions and more pills and potions.

Then there are the ‘other’ doctors or practitioners one would like to see.  I see a cognitive therapist who keeps  my enthusiasm for this blog going and keeps me going.  Even only seeing him every three weeks (and he is around the corner) proved too much this week.

There are the people I might like to see but can’t.  I read on the Mayo Clinic web site that a significant number of people who have ‘tingling of hands and feet’ symptom are helped by acupuncture.  Great idea but when, where and how much?   And massage?  And Rieki?  And nutritionists? And on and on.

Today  I think of Haiti.  I haven’t been there for about 40 years.  My first trip was in 1965 and I remember going up the post office steps to mail a package home and seeing on every step people who needed medical attention. I remember one boy walking towards the steps with his finger severed holding it on.  They weren’t worrying which doctor to see, which tests to have, which alternative practitioners to visit  What has changed for them in almost a half century?  Where are the big hospitals that can withstand hurricanes and earthquakes?  Not in Haiti, I can assure you.  Where is the clean water and the food supply?

‘To be honest, Mr Pat Robertson, I don’t think there are many voodoo doctors left in Haiti, but if I was there right now, in the agony of pain, I would try to get an appointment and my money is on the fact that you would be fighting to make your pact with the devil or anyone else who would offer you some attention and help.

The Olafson Hotel still stands a rickity hotel at best.  Unbelievable. A tribute to survivors.

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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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12.3It is a rare day when both my son and one of  my most educated friends send me an email about a Guardian article recommending a book by Barbara Ehrenreich called ‘The Bright-Sided: How the Relentless Promotion of Positive Thinking Has Undermined America.’  Barbara  and I are on the same wave length. I just take a lighter tone.  She was diagnosed with cancer and learned how many sham ideas are around to ‘help you with it’.  I recommend  Barbara’s blog  http://ehrenreich.blogs.com/

Get in touch with your negativity:

1.     On waking, lie or sit on your bed, cross your arms over your chest and shout, ‘Cancer Sucks’  at least 10 times.

2.      Take a page from your health care policy and find a dart, hang it on a wall across from your bed and throw the dart at it.  Once is powerful enough. Don’t bother to get up and pick up the dart and try again, unless you feel you need to. No dart?  Anything will do, a fist is fine.

3.     Tea-a-thon. Make yourself tea ten times in one day and give yourself a donation.  Find a cancer researcher who has no ties to any drug company and donate your few pence or dollars to him or her.

4.      Just like running a marathon, a tea- a- thon can attract sponsors.  Once you find a researcher who is free of drug company support you can call on friends to sponsor your trips to the tea pot.

5.     Stand naked in front of a full length mirror and repeat:  Mirror, mirror on the wall cancer has not made me look better at the mall.

6.     Find a friend who has NOT said you will be fine.  CALL  your more negative friend immediately.  Discuss your ‘living will’, your prognosis, and the crappy way you feel.  If you’ve  chosen well he or she  will be happy to address these issues with you and you will feel better.

7.     Cancer survivors are people that die in car crashes.  I’ve survived for 13 years with cancer, but I will not survive cancer unless I overdose, cross the street in traffic, am murdered, or have a heart attack. Instead of turning off the news(which is advised by the positive thinkers) turn off the survivor interviews. Hearing that some fit movie star or athlete turned their life around by working out, keeping fit and living a more humane life will not get you out of bed if you are tired, nauseous, having your side effects and it just makes you feel you ‘should’ being doing more.  Forget it. Turn it off, get warm and have a day of rest and anti sickness pills.

8.     Put ten foods you really like back in your refrigerator  Let’s get real. We already have cancer.  (OK fair enough- if it is your first go you might want to eat properly) But there is not a lot of great research saying that what you eat will cure your cancer.  So  find ten foods that you love but have decided that you won’t touch again because they are ‘carcinogenic’.  Probably, when eaten by the truck loads, they are  bad for you and when  given to rats in the lab definitely are.  I’m not advocating eating them all the time. BUT lets get real.  Replace ten must have but hate foods, with ten love them and miss them foods and see what happens.  I am pledging to have one cocktail a week.  What the hell.

9.     When someone asks you to buy a “pink ribbon’ teddy bear, participate in a five mile ‘Cancer Walk’, run a marathon, trek through the Himalayas, bike through Africa or, as I was recently told about, jump out of an airplane for cancer, hang up. Contributing to someone else’s hard time is not useful and having that as some sort of goal when you are coping with cancer is ‘positive thinking’ gone insane. Forget it.  Where is the money actually going?  The research on cancer (read Barbara’s book or blog) has not gone very far. We need to find something that might change things, but it is probably out of the remit of our charitable friends.

10.   If you are working, caring for children and also dealing with cancer,  having a positive outlook may help you get through the day, but ‘cancer sucks’ and you never asked to be a ‘superwoman’. YOU DID NOT BRING THIS ON YOURSELF.  You were not dealt these cards you are being asked to play.  In tribute, take a deck of cards and throw it on the floor.  This ritual will help you visualize the situation.  You can hold the cards over your head and throw them over your head for maximum effect.  Think ‘ I was not dealt these cards and I did not deal them’.  They just happened and CANCER  SUCKS!

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My New Year’s resolution is not to listen to my ‘hubris’ devil anymore. I’m going to get rid of my cold cap and lose my hair.

The cold cap is a crown of ice that one wears during chemo in the hope that your hair follicles will freeze and therefore, not fall out. (See http://cancercurmudgeon.com/ It adds about an hour to your chemo regime because it needs to cool down in the beginning and at the end . Cold caps during the winter are especially cold.  For some reason, the last treatment was the coldest and worse because I had a chest infection.  Although I can intellectually believe that germs cause these infections, it is difficult to imagine that four hours under ice is good for anyone.  It is the worse

Actually, can you make that 30 years ago!

Actually, can you make that 30 years ago!

part of chemo and now I hope instead of trying to keep warm I will  read, watch a film or snore in comfort.  A woman came into the consultant’s waiting room yesterday with a baldhead.  She looked defiant, and strong willed. She had no scarf, no wig, and no turban.  I thought ‘YES”, that’s the real fashion approach to cancer.

Why did I do it in the first place?  Good question and one asked at times by various chemo staff who do not believe in cold caps and always say they would never have one.  I think at my age of 70 my devil is vanity (or hubris).  I think as long as I have my longish dyed hair someone will mistake me for a younger person. How young can they possibly think I am? I can’t see any benefit to looking 60 or even 50, but if I were to look 40, well that would be something.  This is where hubris comes in. Somewhere, in the back of my mind is a small devil’s voice that says,  ‘Vell, maybe, why not give it a try?”

But will it remove hubris?

But will it remove my vanity?

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