December 2009

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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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“The Holly and the I.V.” Alan Bennett (Untold Stories)

Friday, December 25, 2009 in Decisions, delusions and befuddlement, cancer prognosis, medical care by admin | Add a comment...

Alan Bennet's 'The Habit of Art'premiered at the National Theatre, London in November 2009

Alan Bennet's 'The Habit of Art'premiered at the National Theatre, London in November 2009

Alan Bennett, British author and playwrite.

Alan Bennett, British author and playwrite.

Alan Bennett, the British playwright talks sparingly about his cancer, because in his words, ‘cancer is a bore’.

I agree with him and took that view for 13 years. It is only this year I decided to do this blog and try to find some humor in this situation.  Otherwise, when they removed my tumors, or tried to, they would have also succeeded in removing my sense of humor. Can’t let them get away with that!

I take Alan Bennett’s view that it is a call to get life in order.  My theory about this is that one must  ‘write a will, write a living will’ and forget about all the rest.  I also agree with him when he says that all he did as far as alternative medicine was to ‘cross his fingers’.  It all gets too complicated.  The statistics were against him making it through the treatment, but he defied them and has put two major plays on since cancer, The History Boys and The Habit of Art.  He has had 12 or 13 years of cancer free life.  Good run.

The day centre is not decorated for Xmas and there is little Xmas spirit as such. I think that is in respect for the many religious groups that pass through these doors or is it budget?  The staff talk among themselves about who is going to work on New Years Eve.  I asked about the staff Xmas party but did not get an enthusiastic response.  They deserve a real bash and I don’t think were given one.  I wonder if they feel that they are in a time warp.   I strongly believe that the days of Chemotherapy will be numbered and that somewhere there is a guardian angel delivering the gift of a ‘cancer treatment’ if not cure that does not include Chemo.  I would gladly spend a long time finding these good humored efficient people other jobs.  Jobs in places that have great Xmas parties and lots of glitz. They deserve it.

I woke up this Xmas day  to find in the New York Times an article about chronotherapy, the new direction in treatment for various illnesses.  From what I imply from the editorial we need to find the optimal time of day for our chemo treatments.  How do we do that?  I think we need to measure our blood pressure, our temperature, our sleep cycles and then present our findings to our oncologist.  My medical file looks like an Encyclopedia Brittanica which has been dismembered and regrouped in some way only understood by my oncologist.  I can see her taking this data looking at it with great seriousness and them plopping in her file, hoping against hope that I will have forgot it all by the next week visit.

Have a great Xmas and with or without chronotherapy we hope to see a few more.

In the words of Alan Bennett from “The Habit of Art’ spoken by Richard Griffiths as Auden.

” We do not contain life.  It contains us, holds us sometimes in its jaws.  The sesnile, the demented, life has them in its teeth…in the cracks and holes of its teeth, maybe, but still in its teeth.  They cannot let go of it until it lets go of them.”

‘The Habit of Art’ published by Faber and Faber

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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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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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