January 2010

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image1The next person who says, ‘you look tired’ I will personally murder.  Or course I look tired.  I’ve been in this hospital for a week with three blood infections that have names I didn’t write down for fear I’ll look them up on The Iuternet and scare myself to death.  My living will doesn’t cover throwing my hands up in vain and shouting OUH VEY .  When I last checked this was not a beauty farm although it is the Harley Street Clinic and in the area there are hundreds of Botox and plastic surgeons.  I’d give anything to be with one of them, but I’m here, looking tired. I’ve been on three different antibiotics and have a nebulizer, oxygen, and whatever is trying to make me look less tired and not succeeding.  Also my hair is falling out in handfuls, slowly and torturously.  Look tired, no, I look like a wreck going somewhere to happen.

The hospital is a kvetcher’s paradise.  If you can’t find anything to kvetch about here you should give up you rights to complain.  From the moment I put my foot in the door things to complain about flowed.  No bath in my first bedroom and a large hospital chair sat in the middle of the shower.  The first thing the officious nurse did was to rummage through my suitcase and take my drugs.  Then the doctor on call ‘borrowed’ my drug list and went off with it never to be seen again; well it was only the first hour of the first night.

I won’t go on day by day, but one can complain in general.

1.     Being woke up at 5 in the morning for antibiotics.

2.     Having your blood pressure taken every hour or two. Does it change that much? This is the one I can’t understand. I think the robotics people at Imperial College London are working on a robot to do this. Hurry is all I can say.

3.     Nurses that make the blood pressure cuff so tight you could easily scream and defiantly should scream.

4.      Nurses who forgot half your medication and disagree when you tell them they’ve forgot.

5.     Never enough blankets.  Is this a developing country? Asking for an extra thin blanket is never easy especially when you really want two extra blankets.

6.     Pills you are supposed to take left in small containers next to your bed and you come across them the next day.

7.     Twenty five to thirty year olds who trained to be speech therapists and physical therapists by memorizing the book.  They look like something out of “Mad Men/,” dressed to the height of office protocol.  High heels, sensible dress (translate, boring) or suit, make up perfect, hair perfect you already hate them and they haven’t opened their mouth yet.  One such speech therapist and I are going to come to serious blows.  Instead of admitting that she never did a proper swallowing assessment, she surreptitiously showed up during lunch the next day, no doubt to watch me swallow.  She kept insisting that I was perfectly all right.  Fortunately, I have a more experienced speech therapist with some authority who sorted everyone out in no uncertain terms.  I won’t go in to details.

8.     Nebulizers that go over your nose and mouth are to be kvetched about.  They are never given at the right time.  The noise interferes with TV; it wakes you up just as you are drifting off, and greets you at 6.30 in the morning.  AND nurses leave it on and say they will be back in ten minutes.  Ha.  They never come back unless you call them and it is difficult to figure out when it is finished.  After several days I asked how you turn it off. Now after ten minutes, off it goes, I have to get out of bed to do it but it is worth it and after ten minutes of whirring I’m fully awake anyway. I tried to close it off a few days later and it exploded. (Maybe best I keep my hands off of it.)

9.      Now this is personal.  Disposable underpants.  The ones they supply in the hospital are diapers.  I don’t know how long it is since you’ve diapered anyone, but pampers are a long way back in my history. I was faced with a complex diaper, half asleep, and wondering when I could lie down again. I found a friend who found some proper disposable underpants that look like they are supposed to look.

10.  Within sight I have Wolf Hall (Hilary Mantel) with only 100 pages left to read and about 10 other books, DVD’s and my blog to write and I’ve felt too tired to do anything.  It is worth complaining when you have no other symptoms besides tiredness.  There is nothing to get your kvetch into like vomiting (well you know the list).

Now that I’ve had my Kvetch I feel better,  Of course the staff here is very good and the care excellent, but I kvetch to visitors and to myself mostly.  I think it is therapeutic. Since I have no voice only a whisper and English is not a big first language around here, I don’t do any real damage.

Anyway, Chemo is cancelled and I’ll be here another week. Today is the first day I’ve felt able to blog, so I will try to keep it up.

"Have any cards for someone who's just kvetching?"

"Have any cards for someone who's just kvetching?"

Another Kvetch, they didn’t find my Advil PM supply.  Like any good American I managed to get Advil brought in (it is illegal in the UK) and NO ONE WILL EVER GET MY ADVIL. (Don’t worry about addiction; it is just my security blanket.)

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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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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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