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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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New Year’s Resolution: My bald chemo hairdo will do

Thursday, December 31, 2009 in Decisions, delusions and befuddlement by admin | 1 comment

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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Tickets to dreamland or a cancer fantasy adventure

Wednesday, December 30, 2009 in Decisions, delusions and befuddlement by admin | 1 comment

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One of the strangest, most enigmatic gifts I’ve ever received came from my stepmother on my birthday, right before Xmas. From what I understand, I have received  airline tickets to anywhere I want to go in the world. It is the kind of present I would have killed for if I were my 20-year- old godchild or even myself at 50.   This present marks my 71-st birthday and a long trip for me is to my cancer treatment center, about a ten-minute walk. Lynn, my very generous stepmother  who sent it, is 14 years older than I am and now almost never travels We do speak every week and for the last months she has not been able to understand me very well  because I have a frozen vocal cord and maybe that leads to misunderstanding about my condition.

A gift of airline tickets to see the world. Am I being set an impossible challenge or a given a  positive kick start to a new adventure? I haven’t seen the details yet so it remains an elusive dream, but I like to think of it as a chance to dream a good dream.

The tickets create a demand. I must plan to go somewhere after this cancer treatment. Of course I have no idea whether the chemo will arrest the cancer (it will not eliminate it – there is no Santa Claus) and whether after the treatment I will opt for more surgery (might be possible) or whatever else might be on offer. Let’s just say my voice improves, an essential for travel.

Dream as big a dream as possible is what I say.  I spent the morning googling looking for a trip that is  not too demanding but hugely significant. I think I found a trip on a hospital jet around the world (well not quite).  It is actually three trips in a private jet shared by others, with a doctor on board.   The first trip begins in Mali, then to Egypt, Jordan, India, Bhutan and then, the second goes  to Thailand, Indonesia, Cambodia, Laos, Vietnam, China, Japan and South Korea and the third  to The Ancient Silk Road, Mongolia, Uzbekistan, Armenia, Georgia and Turkey. (My present only includes airfare and I don’t imagine it includes a private jet around the world; but, if you’re going to dream -dream big.) I think the plan is not to check the reality of that particular situation.

Rule one:  Don’t check on my present situation too closely.  Don’t count the hours I need to rest or the hours  not ‘touring’ I put in at home, in London.  

Rule two: Don’t look in the mirror. No one that tired could travel far.

Rule three: Never check with the person giving the present to see if this is what she had in mind. She might not be this ambitious.

Rule four: It is probably the most generous gift I have received and it gives hope which is most important.  I will never forget it.

Thanks Lynn

You can always find a place to flop (Judd foundation)

You can always find a place to flop (Judd foundation)

Note: I find that the two people I’ve been closest to over a long period of time, over fifty years, have an optimism that I need to begin to share. My school friend keeps talking about trips to our college reunion.  My stepmother sent me the tickets. My London friends, some I’ve known over thirty years, never suggest trips. One is giving me dinner cooked in my flat for a Xmas present. Appropriate idea. Others have given me books, CDs and DVDs. They have given me nothing too demanding. I have a feeling that because they see me at least once a month they see the reality of the situation.  But there are times when reality sucks and it is fun to get beyond it!

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Are we victims of cancer marketing?

Saturday, December 19, 2009 in Decisions, delusions and befuddlement by admin | Add a comment...

Forty Years’ War – Cancer Center Ads Use Emotion More Than Fact : an article in the NYTimes.com

Cancer experts interviewed for this article say there are no comprehensive statistics showing that any one elite medical center has better overall cancer success rates than its competitors.

I just read in the NYT that we are marketed by hospitals.  HOSPITALS NEED US.  Wow!  That is scary.  Where I get treatment there are at least three major cancer centers on the same famous ‘Harley Street’ and a brand new teaching hospital UCH about 10 minutes walk away. London Clinic is building a enormous center with all the mod-cons, one can imagine.  Harley Street Clinic that is modest by comparison has opted for a private wing at UCH as well as the center on Harley Street.  I was also told about the London Oncology Center also on Harley Street.

From what I see, the patients around me in the day center come from all over the world.  An Arab family has a lovely lunch spread out and they are sitting cross legged eating and looking very much at home.  The woman across from me is speaking French on her mobile.  On the other hand I just heard of a family raising 300,000 pounds so that their infant can have life saving cancer surgery in the USA.  Were they all marketed? I hope not.

Let’s just say that someone, somewhere found a cancer vaccine or a way of manipulating genes so that the disease was no longer prevalent. I’m of an age where I remember polio and the boy next door who had to be in an iron lung.

Don’t hear too much about that anymore.  Now what would happen if cancer stopped being a major disease? Would all these centers of “excellence” close down and all their marketing directors made redundant (given the sack in USA terms).  I wouldn’t miss them.  Would you?


And here is what the experts recommend (from an article by Natasha Singer in the New York Times, Dec. 19, 2009):

FIND A GOOD FIT The American Cancer Society recommends choosing a doctor and a hospital with a lot of experience in treating your particular type of cancer.

Dr. H. Gilbert Welch, a professor of medicine at Dartmouth’s Institute for Health Policy and Clinical Practice, recommended that patients ask their primary care physicians to find out whether a hospital or specialist they are considering has expertise and experience in treating their particular cancer.

CHECK CREDENTIALS You may also want to ask about a doctor’s credentials, like board certification in surgery, or whether a radiologist has a subspecialty in radiation oncology, according to the National Cancer Institute.

Patients may also ask whether the specialist has published scientific articles on their particular type of cancer, a sign that the physician is a leader in the field, said Dr. Thomas F. DeLaney, director of the Frances H. Burr Proton Therapy Center at Mass General.

AN UP-TO-DATE DOCTOR Dr. Chabner also recommended that a patient ask whether a doctor has a teaching appointment at a medical school and conducts research, indications that the physician is up on the latest developments in the field.

THE HUMAN TOUCH Patients, Dr. Chabner said, should choose a doctor who seems comfortable communicating with them, a particularly important skill when discussing cancer treatment options.

And once you’ve done all this, you can have your chemo., if you can still remember where you do have your treatment.

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Health care: A big decision.

Sunday, November 29, 2009 in Decisions, delusions and befuddlement by admin | Add a comment...

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Decisions, decisions, decisions… We C people have made more than our share.  What screening? What operations? What chemo? What diet? What pills? What doctors?   AND now, in the US of A, they want to add ‘choices’ to Health Care Insurance just to boggle the mind further.  I live in the UK and have very good private health care.  It’s cost a bomb but I’m happy with it.  BUT, having said that, if for financial reasons I had to stop, I’d be very confident to have treatment on NHS.  WHY?

My Oncologist has been with the NHS since she qualified.  I’m sure when she goes from her patients at UCH (University College Hospital) across the few streets to Harley Street she changes from a ‘public health’ doctor into a ‘private health’ doctor.  But she doesn’t go into a telephone booth like superman (or superwoman) and change into ‘private’ doctor persona. She practices the same medicine.  It’s inconceivable that she’d behave differently with private and NHS patients.   In her own words, she practices the best medicine she can, every day with every patient.

At the beginning, I did have a very distinguished ‘private consultant’, the kind with a boutonniere.  His assistant missed my next cancer entirely, postponing treatment for at least three months.  I had streaks on my breast, which she diagnosed as radiation. As soon as my oncologist looked at it she knew it was cancer.

There is a feeling expressed by many ordinary people in Great Britain that if you are seriously ill you are BETTER OFF with the NHS.  You have access to all the specialist hospitals, the best consultants and state of the art care.  This doesn’t mean that it works out well for everyone.  What I’ve found is that social services let people down more than the medical care they receive. But that has nothing to do with NHS Health Care as seen by the USA.

My friend died several months ago after a prolonged struggle with esophagus cancer.  He was treated on the  NHS.  To save his life, he underwent two heart surgeries, all in a specialized heart hospital and with  over a months intensive care at UCH (University College Hospital) London. He had the best consultants looking in every day.  He had state of the art pain relief so that when he finally died (as he had requested in a living will) it was without pain.  If he’d left hospital he would have gone into a hospice that we’d researched visited together.  It looked lovely. When you live alone, as he did, the idea of a small cafeteria and a garden with a private room is very inviting.  All this under National Health care, which Americans seem to hate, is free!

Do you really want to rely on your private health care?

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