Sorry.
I’d tell you that I’ll do better but that would probably be a lie. But I will fire things off as they appear in my life or in my head. Buckle up.

Today, I was reading an article in the NY Times about who should and who shouldn’t get screened for breast cancer and whether it makes any difference at all.
And I was reading, and I felt my anxiety level creeping up, because, and you can go ahead and call me paranoid on this one, it seems like the media likes to stir the shit and are pretty happy to print any old story that will grab people’s attention. It seems to me that if the beginning and the end of your experience with cancer is reading stuff in the newspaper or watching snippets on CNN you will just end up feeling completely and perpetually spun around until you no longer know which way is up. And you will always be terrified of getting sick and what you should do, or shouldn’t do, or should have done, if the day comes when you get sick.
Making people terrified and confused, that is what is sick.

So I was reading the article and I felt that feeling of angst start to wash over me.
And then I remembered what it was like to be right down there on the firing line, and I know lots of people will do things differently than me, but when I parachuted into the land of the lab coats, I was pretty much willing to do whatever they told me. That made me remember that, back in the day, I didn’t care what the NY Times said about mammograms and I didn’t care about what anyone else said either, unless they happened to be my doctor, with my chart tucked securely under their arm.

I guess I am of several minds about the situation, because of course it’s good to provide people with information about any illness. It also makes me look like a hydra.
But sometimes, the way the media cranks up the hysteria around cancer,a disease which comes with a healthy dose of organic anxiety producing mechanisms, well, that fanning the flames of personal terror just seems sort of sadistic to me.
That’s what I think.
I think that in the face of presenting what should be helpful, possibly life saving information, the media just cranks people up till they can’t tell right from left.
It’s sort of shameful, I think.

And, I want to have a wee vent about cancer patients on television. Or, I should say, the way television depicts characters who are supposed to have cancer. There are a couple of ‘em in popular culture right now.
Here’s my beef.
The little head scarf is moving me to tears but the abundance of eye brows is throwing a monkey wrench into any credibility you may have hoped to muster, mister.
And…
losing one’s eyebrows is no small thing, whether from chemotherapy or to make your tv show seem credible.
I know that sometimes the suckers just don’t grow back.
I also know that the way people look when they, as a real life human being, do chemotherapy look is jarring, and disturbing.
I can say with no hesitation that I pretty much hated how I looked when I was bald like a baby and had a moon face from steroids. So maybe that look is too much for your average consumer of popular culture.
But I have to say, as a member of that exclusive club, it kind of irks me when the make up team don’t even bother to cover the eyebrows up with masking tape or duct tape or something.

And on other fronts, because I am the world’s worst blogger, I neglected to mention that sometime between now and my last post, I spent 3 weeks in Costa Rica, diving with white tipped reef sharks and turtles and so many amazing fishies and animals.
It was great.
Someone asked for pictures but since most of my time was spent underwater, the photos I have are few and not as spectacular as the images I brought home in my mind.

And because I believe in the power of the internet to say all things to all people, I want to take a second to say that, while I was originally sort of annoyed with Reef Runners in Puerto Limon, my final verdict is that I think they really sat up and paid attention when I said I was frustrated with how things went, or didn’t go, while I was there. The owner made a huge effort to make everything right when he found out I was unhappy.
And as soon as I remember my tripadvisor.com password, I will make that info known on that site as well.

And, shoe on the other foot, let me just take advantage of the internet to say that the So Posh clothing company in Florida ripped me off, which is a big drag. I have been shopping online for at least 10 years and I have never, ever had a problem before.
But these wankers took my money and then never sent my Ed Hardy shorts.
When I complained, they apologized and said my order had been mixed up with someone else’s and they were fixing it. Silly me, I thought they were telling the truth.
That was about 6 weeks ago, and let me just say, it’s no longer shorts season in the town where I live. I ordered one pair of shorts in July, and here it is November and all I have to show for my money is a stupid lying e-mail saying they were going to fix it.
They don’t answer their phone and no longer respond to my e-mails.
I suppose dogs like this just pull up stakes and start something new with a new name.
Paypal won’t help cuz too much time has passed.

But hey, don’t blow your cash on anything from So Posh clothing in Florida. Liars and cheats. Bad, bad So Posh.
I just wanted my shorts, but these guys are some dirty rotten scoundrels. So Posh, stealing wankers.
Don’t be pulling your credit card out to send any money to these wankers.

(How many times do I have to say So Posh, So Posh, So Posh, So Posh so the search engines pick it up and other people are spared the BS I have gone through? Does anyone know how many times I should mention that Samantha, yes, that is Samantha at So Posh, in Florida, lied to me and ripped me off, when it would have been very easy to put my Ed Hardy, did I mention they were Ed Hardy shorts? Samantha, from So Posh in Florida, could have been a non wanker and sent me my Ed Hardy shorts, but no, she ripped me off, so shame on So Posh and please don’t let them screw you over like they did me. Wanker cheating morons.)

Aside from being ripped off by lying American wankers not actually selling Ed Hardy shorts from Florida, things are good.

Though I remain gobsmacked when I look at all the ways American people are trying to wiggle away from some sort of moderately ethical health care system.
Listen to me, America.
The equation goes like this.
1) you are born (which in america, costs money)

2) you live, which will involve broken bones, skinned knees, bruises, cuts and stitches, broken hearts, (for which, I hear, they have no successful treatment except substance abuse or the rebound relationship or both) and who knows what else, which also all costs money

3) one day, one way or another, something completely craptastic will happen to you and will make you dead. This process will also cost money, which seems sort of unfair, because they should fix you if they are going to charge you.

Anyway, it just seems to me that unless you have yourself some health insurance, you might as well take an extra job on the night shift at the takeout window at the all night McDonald’s so you can just keep on top of the interest on your hospital bill. Or I guess you could lose your house to pay for your health care.
Everybody is gonna get sick, at some point, and everyone is gonna need some help from the people around them.
Why do you guys have such an anxiety attack when someone tries to make it just a tiny bit less catastrophic to be sick?

Seriously. You have me completely confused.

Adios. Till next time.

And hey, did I mention, don’t do business with those wankers at So Posh in Florida.

It’s not my business, in a general sense, so my initial response is to let you do what you want with your healthcare system.
But it seems that lately, the forces of paranoia and manipulation have trotted out the Canadian healthcare system and they have done their best to fan the flames of a national anxiety attack and shit talk the system we use in my country.
You can be as dumb as you want, but when you shit talk me or mine, I will be forced to respond.

Let me just step right in and alienate a large group of people right off the bat.
I think healthcare for profit is immoral.
And someone who lives a life like mine doesn’t toss the word “immoral” around lightly.
I don’t think pornography is obscene but I do think that healthcare for profit is obscene.
But that’s your system and not mine and you get to do things however you want.
I would be an imperialist if I tried to make you accept systems of organization that work for me but might not work for you, and we won’t have that.
But I believe some rich stakeholders are telling you some fabulous lies, and I want to tell you a few things as someone who has spent a lifetime accessing government funded healthcare.

So, here’s a wee anecdote.

As you probably know, 5 years ago, I got sick in a fairly major sort of way. I’d be willing to say that, I suspect, most people around me didn’t expect me to make it.
That’s a subject for another day.
The subject for today is this.

I got sick.
My surgeon wanted to operate but there was about to be a strike by some folks in the healthcare system.
Those folks went on strike for a few weeks.
After a couple of weeks, they got ordered back to work by our not at all socialist government.
The strike was broken on a Monday. By the not at all socialist government.
On the Friday of that week, I had my surgery.

And, no one kicked me out of my bed. In fact, I was wiggling my way out the door and bugging the nurses to be allowed to go home.

I was discharged and within days I had an appointment at the local cancer agency, where they more or less took over my life. That was probably for the best.
But there was never, ever, a moment when I had to wait for attention on a healthcare level.

I know, you have been told that it’s the red hordes up here, doing terrible things to healthcare, but I have to tell you, I don’t see it that way.
Patients aren’t rotting on gurneys in the hallways of hospitals.

And I don’t mean to be ghoulish, but I had an internet ovca buddy who was diagnosed about 3 months before me, with the same cancer at the same stage.
I realize it is possibly apples and oranges, but she is dead and I am not.
She posted a lot about having to spend hours in emergency rooms to get care, spending a lot of time in a great deal of pain, and being left to wait because she was self employed and didn’t have some fancy HMO insurance package.
I pay about $75 a month for my access to healthcare, with very few restrictions and no one says who my doctor will be but me.

Today, I read two good articles that articulate the point better than I could.

One is from The Guardian

http://www.guardian.co.uk/commentisfree/cifamerica/2009/jul/31/healthcare-barack-obama-nhs-childbirth

and one from Slate.com

http://www.slate.com/id/2223911/

and as someone, somewhere, wrote today, I would rather live in a system where I might have to wait a month or two for a test than live in a system where I can’t ever have the test because I don’t have enough money.

Don’t gobble up the crap.

You deserve better. No one should be sick and know there is a treatment, but it’s not available because they aren’t rich.

It was 5 years ago this weekend that my then girlfriend followed my gurney into my hospital room, fed me ice chips, and told me that the surgeon told her I had cancer.
In retrospect, it seems a bit sketchy that he left that rather ominous job to her, but it didn’t seem weird at the time. And also, my surgery was on a Friday afternoon, it was supposed to take 45 minutes, but ended up taking about 3 hours. I imagine he had some babe on his sailboat, waiting for him to show up and forget about his work week.
And I also think the surgeon is a big part of the reason that I am still alive.
Apparently, a surgeon trained in gyno oncology will increase one’s chances of survival by up to 50%, so I forgive him any procedural breaches.
He wasn’t much for talking, but I am still alive, and I’ll take that over him being a good radio host.

And, we may be broken up now, but in the moment when Elaine was left with the job of telling me I had cancer, it was sort of a big demonstration of how she and I often process enormous and difficult things the same way.

It went like this (as far as I recall).

The porter wheeled me into my room.
Elaine caught up with me/us at some point in the hall.
I looked at her, really in more pain that I can ever recall having been in, and said, “I’m thirsty.”
She brought me ice chips, cuz that was all I was allowed to have.
Then, after some amount of chit chat that I no longer remember, she told me the surgeon had told her I had cancer.
She handed me a strange anatomical drawing that, vaguely, showed where the cancer was and what chunks he had cut out.

I was reading an article last week that said Alzheimer’s was the second most dreaded disease, next to cancer, (which is funny cuz I have dealt with both pretty up close and personal.)
But when my then girlfriend had to tell me I had cancer, I don’t recall either of us sobbing or freaking out (which is not to say that we each didn’t have our moments at various points along the way but not in that moment).
But, what I recall was that we were both oddly and wildly practical. Both of us taking the position of, “okay, what do we do next?”

And I spent the weekend in the hospital. And people came, and some of them knew when they got there and some of them had to be told. And I can’t speak for my ex-girlfriend, but I sort of felt like we needed to cushion the blow for the people who came by. We had to look after them a bit.
Obviously some people were more freaked out than others and some people are better at containing that than others, and having a morphine drip really does make a cancer diagnosis just a tad less freaky.

Anyway, it’s weird to think back on all that.

Technically, I shouldn’t say anything about a 5 year anniversary till I hit 5 years from the end of treatment. That would be November 12/2009. for those of you keeping track at home.
And, it’s confusing because I am part of a clinical trial, so they will keep an eye on me for 7 years, rather than 5. So… when do I get to kick up my heels? 5 years or 7? Maybe I get both.

And, there is always the stupid BRCA 1 gene mutation hanging over my head.
I spoke to my GP a couple of days ago and she said that because I have a direct blood relative now dealing with breast cancer, my chances of getting it go up from an 80% likelihood to… who can say?
I mean really, once you hit an 80% probability factor, does it matter if it nudges up, since it really can’t nudge up very much before Dr. Kevorkian drops by and does his thing as a community service.

Anyway, this is the first of a few 5 year anniversaries.

I realize that, when I was sick, I just put my head down and pushed through it and hoped for the best. And now, there are some loose, freaky ends that need to be looked at and tied up.
Hitting the 5 year mark probably helps me with that introspective process. I think I have a bit to figure out, since, statistically speaking, I should probably be dead now, not hammering away on a keyboard on a beautiful May evening.

And, after 5 years in the trenches with this stupid disease, I want to take a moment to think about the various women I have known, mostly through e-mail, who didn’t do as well as I did. And I am sad it had to be so stupid and difficult for them, cuz it was difficult enough for me. I am so, so sorry it was harder for them, and often, with such shitty outcomes.

RIP, OVCA chicas.
You all helped me more than you will ever know.

I like having more light. I like coming home from work in daylight.
The winter had an eternal feel to it, like I could no longer imagine it was going to stop being winter. And then I had the strange realization that some people like winter. I’m not sure how many of them live in my town, though.

So life is gradually, in little nano-sized baby steps, getting better.
And life is probably always going to have a lot of 2 steps forward, one step back.
But work has been really great. I don’t expect that condition to stay that way forever, otherwise they might stop paying me cuz it’s no big hardship, but right now it’s really good.
Of course, I now have a couple of co-workers who are making me nuts, but I can deal with that. Or them.

Just finished up my quarterly cancer scrutiny whirlwind tour of labs and clinics and doctors’ offices all around town.
That stuff always sort of rattles my cage, but I guess that’s to be expected.
My bloodwork came back higher than I would like. It’s still within the acceptable range, but close enough to the high end of that range that it could reach out and shake hands.
It’s the highest it’s been since I finished chemo.
The doctor is in a “let’s see how it takes shape next time” frame of mind.
I’m not completely sure how to explain how it is for me.
Probably it’s nothing but the cheeseburger I had before my bloodwork, but it is alarming.
When my CA 125 has been down around 6, and anything under 25 is okay, to have it shoot to 20 gives one pause.
And… all I can do is wait and see.
And it’s probably a good reminder for me to not get too cavalier about all this.

And, same day, same office, same on-call-ogist…. we start talking about my rock ‘em sock’em genetic inclination towards breast cancer.
I believe the number is 80% chance of getting it.
Oddly enough I had been listening to a podcast the day before saying, without the mutation, a woman has a 1 in 20 chance of getting breast cancer.
So my ever cheerful oncologist says, with no prompting from me, “If you want to lower your risk level to that of a normal woman, you need to have the double mastectomy.”
She wasn’t trying to sell me anything, it was more like she could see inside my often transparent brain.
So, I sez to her..”whoa, wait. I could have the surgery and then, *still* have a 1 in 20 chance of getting breast cancer? That’s pretty fucked up. How pissed off would I be if I had that surgery and then. still. got. breast. cancer.
Apologies for profanity but whoa.
Don’t go to Vegas if you have that sort of luck.
And then I was catching my GP up on all the news. And she was asking if I want the surgery.
And, right now, I just don’t.
I might do it one day, but right now I am not ready.

So, it’s weird. It’s always weird when I have to parachute back into cancer land. Cuz on a day to day level, you try to get on with regular life again, even though it’s always there in your head.
Cancerbaby said we are like pictures with watermarks on them. At first glance we look regular, but in the right light, held at the right angle, it shows up.

Anyway, in spite of how this might sound, things are getting better. Slowly.
I’ve got some scuba diving plans, once work settles down a bit.
I have some other things up my sleeve.
I like the light.
And it even seems like I have got a few lucky breaks lately, and I’d like to keep that ball rolling.

Happy equinox-y stuff, peoples.

Enjoy the light.

And hey, there is a symbol for biohazard, but is there a symbol for mutant or mutation? do I have to rely on the X-Men for tattoo material?

Things have been stable-ish and good-ish.
Pretty much digging the new job, and it’s a treat to be able to go to work and like what I do and what I get to do and be challenged and have it be exciting. I like that. And, on top of that, they give me money, so it’s all pretty good.

The unpleasant thing is that I have pneumonia. It’s the first time I have had to take antibiotics since doing chemo. I am one of those people who dodges antibiotics as much as possible, but after a month of not sleeping more than an hour at a time and waking up gasping for breath, I broke down and saw my GP. Well, it took a month because for the first 3 weeks, the symptoms only showed up at night when I would try to sleep. So, daytime would come and I would go about my day and forget that I couldn’t breathe the night before, and then I’d go to bed and it would start all over again.
Once I started getting symptoms in the daytime, I was quite quick to get it together to see my doctor.
So, antibiotics for 10 days.
It’s okay. I’ll do a lot to sleep through a night.

And today, I emptied out some of my parents’ stuff from a friend’s shed. I sort of dumped it there in a panic last year when I had to deal with it. A bunch of it ended up with mold and water damage, because I didn’t really think about the big picture at the time.
Most of the stuff from last year got thrown out, cuz I just didn’t have enough space to store it.
Today I emptied out the last of the last of it, I hope.
So, I will spend the weekend going through the stuff I have stowed in my truck and the stuff I have stowed in my tiny storage locker downstairs and I will find a way to make it all fit. Which means a bunch of it will end up in the dumpster.
At this point, and at several other points, that was pretty much the only viable solution to having all this nostalgic stuff that I can’t fit in my place so I have to deep six it.
It’s funny cuz I was out driving earlier tonight and it struck me that I am at a point in my life where I should be enjoying the things I have worked for and collected and I shouldn’t be living like a 21 year old. I also shouldn’t be jettisoning stuff that matters, but part of suffering from arrested development is you don’t do things in the expected timeframe.

So, it will be a weird weekend. It always messes with my head when I have to throw out stuff that was my parents’. It’s not like there is gonna be any new stuff from them so I feel like I am throwing away little pieces of them and being a full on ignorant jerk.
But circumstances just keep coming up that that’s the solution. So, it kills me, but I have to do it.

It’s weird though. The whole process of dealing with my parents’ stuff has made me a bit touched in the head about taking on stuff for myself. I am a bit nutty about it, I know, but it just keeps coming up that almost everything gets tossed in the dump eventually, either by me or by whoever has to clean up after me. So, I am now pretty freaking about taking on any new stuff.
So it goes.

Anyway, I am going to go soothe my ragged nerves by watching some BBC programming.
In short, life has been getting better. I just need to make it through the weekend.

So, here’s the skinny.
The last 4 years have been a bit of a hellride for me.
It’s hard to talk about that without sounding like I am feeling sorry for myself. And I am not.
I realize most people in the world have a harder time than I do on a day to day level. And that sucks.
For about 3.5 of the last 4 years, I felt guilty about feeling angry for having been handed the white North American version of a shit sandwich.
Now, I am more comfortable, and less easily swayed from my anger. Cuz, really, some stuff just happens, and so it goes. And some stuff is about stuff we can do better, and I hope people learn to do better because they didn’t do so good by me. Maybe I didn’t do good by them. If so, I wish they would have taken the time to tell me.
And the weird thing is, in allowing myself to be angry without apology, I feel more able to just move forward in the world. I feel less angry.
Like, I no longer give a rat’s ass whether you think I am being self-indulgent, unless you have gone through something similar.

When I was about to leave Costa Rica, I had this epiphany, because I realized I had no big desire to go home, for the first time ever, and if I could just Fed-Ex my cats to Manuel Antonio, I would have.
But since I came home, I decided to give it one last college try. So I am doing stuff.
I let go of the belief that the folks and activities that used to pull me through are still there, because they haven’t, for the most part, been there for years. And it was time to stop kidding myself that they would show up soon.
So I am doing what I want and seeing where that takes me.
So far it has taken me to 30 feet below sea level, where it is cold and dangerous but, oh so very cool.
I’ve been diving, where it’s cold and, really, a completely different world. I love it.

So, today, I look at the scorched earth of my past and I see the spots where some things survive and I see the spots where that which is no longer beneficial makes way for something that might be.
I’m letting go of the past life that I had. I’m ready to go somewhere new and have a new life.
That was hard for awhile, the letting go, but now it’s exciting.

I hate MRI’s, but at least I only have to do them once a year.

Tomorrow, I will be doing a blogging workshop with the amazing Mary Bryson. I’d say y’all should come but I heard a rumour that it was all full up.

Sunday is the Winners Walk of Hope.

And next week, is big time appointments with all my oncologists at the old cancer agency.

And beyond that, I am taking the preliminary steps to investigate if I can go back to Costa Rica for a, possibly, permanent stay.
Who knows.
I try to not read too much into anything.
But I have known for a long time that the only thing left standing in my life that was there 4 years ago is my job.
When it came time to come home, I realized that I don’t have much here to come home to and that, in Costa Rica, I had more fun than I had had in years.
So, something needs to be different. The way things go in my town or the place I call my town.
Obviously these things take a long time to put into place, but it is interesting how much relief I feel when I think there is nothing in this town to keep me here. None of the old things work or exist anymore, so I am free to go create something that does work and that does make me happy.

Stay tuned.

I don’t mean to throw off the natural rhythm of life by posting two days in a row. No doubt some people will find this unsettling, to say the least. But I am posting today because the Winners Walk of Hope will be happening in a couple of weeks and I am letting people know I will be walking and if anyone would like to sponsor me, you could do that by clicking here and you will automagically be taken to the page where you can sponsor me.

Muchos gracias.

Here’s the meat and potatoes of the thing.

Positive thinkers ‘avoid cancer’

Women who have a positive outlook may decrease their chances of developing breast cancer, say Israeli researchers.

The small study, published in the BioMed Central journal, also found that getting divorced, or being bereaved could increase the risk.

But the researchers admitted that women were questioned after their diagnosis, which might significantly change their outlook on life.

UK experts said it was hard to compare different women’s emotional stresses.

The role of mental outlook on cancer remains controversial, with some studies suggesting that it might play a role.

Meanwhile, others have found no significant effect, either on the likelihood of developing the illness in the first place, or on your chances of surviving it.

The latest study looked at 255 women with breast cancer and compared their answers in a questionnaire on mental outlook and life events with 367 healthy control subjects.

They found that a generally positive outlook appeared to reduce the chance of breast cancer by a quarter.

In addition, exposure to one or more of the traumatic “life events” such as loss of a parent or a spouse increased the risk by more than 60%.

Lead researcher Dr Ronit Peled, from Ben-Gurion University, said that women who had been exposed to a number of negative events should be considered an “at-risk” group for breast cancer.

“We can carefully say that experiencing more than one severe and/or moderate life event is a risk factor for breast cancer among young women.

“On the other hand, a general feeling of happiness and optimism can play a protective role.”

But Dr Sarah Cant, from Breakthrough Breast Cancer, maintained that there was no clear evidence that positive or negative experiences could affect breast cancer risk.

“Emotional stress is highly subjective and is difficult to measure accurately.

“Women in this study were interviewed after breast cancer was diagnosed when they may be more likely to recall feeling depression and anxiety.

“The researchers also didn’t account for other factors known to affect breast cancer risk such as family history or weight.

“Breast cancer is a complex disease and there is unlikely to be one single cause.”

I’d say, up till I was diagnosed with cancer in 04, I had a sort of regular exposure to death. I would say I had more exposure to human misery than most folks, because of the nature of my work. But I didn’t feel surrounded by death.

And then I got sick. And then I got to feel what it’s like to not be a regular person. And then I got to experience what it’s like to have some people remove you from the category of regular mortals because they have, more or less, already written you off for dead.
I get very, very tetchy these days when I hear anyone who is neither a patient nor a trained medical professional in a lab coat saying anyone else is about to die.
I actually blew a small gasket at a staff meeting last year when a co-worker stated with great confidence that one of our clients was about to die.
Kind of got hot under the collar and explained, with flapping arms, how completely insulting and chilly it is when people write you off as essentially no longer among the living.
I’ve been thinking about this issue a lot. It’s been the blog post I have been writing in my head for at least the last 2 months.

See, I had decided that people who aren’t sick become completely freaked out about the possibility of the death of a loved one that they make these great sweeping pronouncements about the amount of time the other person has left on their clock.
I figured this was because we, as a culture, can’t speak about death except to say that maybe some god type figure will reward you with harps and puppies or hundreds of virgins or whatever your personal maker has sort of suggested you will get as a door prize for colouring inside the lines while you are still made of blood and bone.
I figured it was about everyone else.

But maybe it’s about me.
Because it makes me really, really angry when people talk like that. But the truth is, people are just going to continue to be freaked out, and not admit that they are freaked out, and make great sweeping statements about someone else’s life.

So, I am going to try to not become spitting mad the next time someone says that stupid crap. I’ll try to remember that they are just freaked out and afraid and not really trying to act like some sort of palliative pronouncing smarty-pants who deserves a kick in the ass.

I don’t know if I can do it, but I am going to try.
And, if that doesn’t work, I do have an Ipod that does a fine job of blocking out idiotic background noise.

R.I.P. Roix

In the meantime, this is really interesting article about cancer and gender and the marketing of cancer and “thinking pink”.
Clearly I think you should read this article because I included it in my links and I am waving my arms around right here, telling you about it a second time.

When Thumbs Up Is No Comfort

By JAN HOFFMAN
Published: June 1, 2008

OVER the Memorial Day weekend, the actor Patrick Swayze, who is being treated for pancreatic cancer, made a pointedly public appearance at a Los Angeles Lakers game, looking strong-jawed and bright-eyed. He released a statement about his lively schedule and good response to therapy. Meanwhile, Senator Ted Kennedy, who had recently left Massachusetts General Hospital with a diagnosis of brain cancer, flashing crowds a thumbs up, competed in a sailing race. International headlines cheered, “Fight, Ted, Fight!”

As public figures are stricken with harrowing illness, the images of them as upbeat — think of the former White House spokesman Tony Snow, Elizabeth Edwards, the actress Farrah Fawcett — accompanied by stirring martial language, have almost become routine.

“Whether you’re a celebrity or an ordinary person, it’s obligatory, no matter how badly you’re feeling about it, to display optimism publicly,” said Dr. Barron H. Lerner, the author of “When Illness Goes Public.”

That optimism reassures anxious relatives, the public and doctors, regardless of whether it accurately reflects the patient’s emotional state. “If Ted Kennedy wanted to stick up his middle finger,” Dr. Lerner added, “that would be the more appropriate finger, but he’s doing what he is supposed to.”

Whether such images inspire patients, or reinforce unrealistic expectations that they, too, should maintain a game face, remains an open question, say doctors, social workers, family members and patients themselves.

Adam Lichtenstein, a founder of Voices Against Brain Cancer, a fund-raising and support organization, sees no down side to Mr. Kennedy’s composure. “It gives everyone else with his diagnosis a glimmer of hope,” said Mr. Lichtenstein, whose ebullient brother, Gary, was 24 when he died from a glioblastoma. “Patients think, ‘He’s fighting it, why can’t I?’ ”

But Rachel M. Schneider, a clinical social worker at Memorial Sloan-Kettering Cancer Center, said that while many patients are inspired by celebrities, others feel guilty for not being as upbeat as the celebrities appear, and angry that the gravity of the disease may be misrepresented. By being constantly reminded that they should keep their chin up, patients implicitly believe that emotional wobbliness will adversely affect their outcome.

“Hopefulness is real,” Ms. Schneider said. “But patients say, ‘I have to be positive, I can’t cry, I can’t let myself fall apart.’ And that is a burden.”

Certainly maintaining a game face is how many patients cap the eruption of terror and anxiety, in an effort to protect their loved ones and themselves. But not everyone is going to be brave, said Dr. Joseph J. Fins, chief of medical ethics at Weill Medical College of Cornell University. “We only hear about those who handle it well,” he said. “As a society we value the stoic but we don’t know what the stoicism hides.”

Although public figures promote enduring impressions of the stalwart, pumped-up spirit, he added, patients themselves often describe a more nuanced, evolving journey. When Robert Kosinski was told he had a tumor on top of his brain stem, entwined with his optic nerve, “Everything went dark, went blank,” he recalled. “I was overwhelmed by the idea that I had a brain tumor stuck inside me. The train ride home lasted so long and I just kept wondering, ‘How long do I have to live?’ ”

Faced with potentially harrowing repercussions from a biopsy, Mr. Kosinski, a husband and father in Jersey City, said he felt depressed and ultimately alone with his decisions.

He chose not to have the biopsy, and went through chemotherapy. He would endure a dozen blood transfusions. Optimism, or even stoicism, were not part of his emotional makeup during those grueling months. “I never felt brave or courageous,” Mr. Kosinski said. “I don’t know what that means. I was scared. I was the furthest you could be from courageous.”

That was 15 years ago. Mr. Kosinski, now 61, paints and attends a monthly support group, where he ascribes his odds-defying survival to luck and medical expertise, rather than personal will. “Some people in my group don’t want to hear the upbeat scenario,” he said. “The way they’re coping is completely the opposite because they feel they may not make it.”

It’s important for patients to realize that “there’s no scripted way to handle this,” Dr. Fins said. “They can write their own script based on their own narrative.

“If we fail to meet patients where their grief has taken them, we have sequestered them off,” he added. “Then patients and families talk about platitudes rather than what they’re really thinking.”

In the last 15 years, as patients have become more outspoken, a mushrooming amount of cancer narratives has legitimized a soulful range of responses to illness. The Internet teems with patients’ voices: communities gather to weep and wisecrack on sites like the uppity ChemoChicks or MyCancer, a National Public Radio blog by Leroy Sievers, a former television news producer .

Dr. Gary M. Reisfield, a palliative care specialist at the University of Florida, Jacksonville, believes that the language used by cancer patients and their supporters can galvanize or constrain them. Over the last 40 years, war has become the most common metaphor, with patients girding themselves against the enemy, doctors as generals, medicines as weapons. When the news broke about Senator Kennedy, he was ubiquitously described as a fighter. While the metaphor may be apt for some, said Dr. Reisfield, who has written about cancer metaphors, it may be a poor choice for others.

“Metaphors don’t just describe reality, they create reality,” he said. “You think you have to fight this war, and people expect you to fight.” But many patients must balance arduous, often ineffective therapy with quality-of-life issues. The war metaphor, he said, places them in retreat, or as losing a battle, when, in fact, they may have made peace with their decisions.

To describe a patient’s process through illness, he prefers the more richly ambiguous metaphor of a journey: its byways, crossroads, U-turns; its changing destinations; its absence of win, lose or fail.

Richard Haimowitz, 62, a lawyer in Queens who was found to have pancreatic cancer in January 2007, thought of himself as a warrior, fighting with all available ammunition.

“The day of my last treatment, people congratulated me, but I felt blindsided by my reaction,” Mr. Haimowitz said. “I thought, ‘Oh my God, I have nothing left to fight with,’ and I felt angry that there was nothing left for me to do.” Statistics to the contrary, Mr. Haimowitz has had two clean scans, is back at work and takes spinning classes. As he soldiered through treatment, Mr. Haimowitz recalled, he did not fear death, even though he did not want to die. Many studies published in oncology and mental health journals have looked at whether attitude is a factor in survival or recurrence rates, a core belief in many cultures and faiths. Some studies say yes, others no. They all have their critics.

“The thumbs-up attitude is very important,” said Darren Latimer, 33, a banker in Chicago who had surgery for a malignant brain tumor in May 2005, and still receives chemotherapy. “You can be in the dumps very quickly in our business, the business of being sick. But can you fight your disease and not yourself?”

Certainly patients need psychic resolve to make difficult decisions, prepare for stark regimens and to push back against bleak prognoses. The evolutionary biologist at Harvard, Stephen Jay Gould, whose doctors told him that eight months was the median survival rate of patients with his diagnosis, abdominal mesothelioma, wrote: “Attitude clearly matters in fighting cancer.” In his 1985 essay, “The Median Isn’t the Message,” he described how he then closely studied those grim statistics to optimize his chances. He died from another form of cancer 20 years after the initial diagnosis.

Uneasy well-wishers, steeped in near-superstitious belief about positive mental attitude, can exacerbate anxiety. On Cancerblog.com and ChemoChick’s “Excuse Me?” sites, lists of tone-deaf remarks include, “If anyone can beat it, it’s you,” “You gotta think positively” and “Just look at Lance,” a reference to Lance Armstrong, the champion cyclist and a cancer survivor.

Brian Wickman, a manager at a luxury hotel in Manhattan, needed to reframe his loved ones’ language. Two years ago, an oncologist told him there was little published data about the aggressive tumor on Mr. Wickman’s ankle because it was so rare and because, “no one wants to publish when all the subjects die.” A month later, Mr. Wickman, then 30, a skier and a rock climber, had his left leg amputated. He was also found to have thyroid cancer. He reacted severely to chemotherapy, and spent two months in intensive care.

His awestruck friends would say, “ ‘You’re so brave, I don’t know how you do it, you’re my inspiration.’ They would put me on a pedestal,” Mr. Wickman said. “That doesn’t allow me to be human and in pain, angry or depressed.”

HIS e-mail messages reveal a spirit of great equanimity and eloquence: Mr. Wickman, who now wears a prosthesis and has resumed athletic activities, will attend graduate school in the fall for a joint degree in social work and divinity.

But in his darker moments, he refused to construct a front. He would write bluntly about feeling grumpy, frustrated and afraid nobody would date him. “This is not a call for pity responses,” he would add. “Just let me be where I am.”

Thursday, 29 May 2008 01:13 UK

Cancer survivors ‘left in limbo’

Many long-term survivors of cancer are not getting the help they need to cope with the after-effects of the disease, experts warn.

More than 60% of adults with cancer can expect to live five years or more, according to an article in the European Journal of Cancer.

Yet they are left “in limbo” to deal with ongoing symptoms from their disease or harsh cancer treatments.

The government said it was working to improve services for cancer survivors.

Professor Marie Fallon, an expert in palliative medicine at the University of Edinburgh, said the number of people living with the effects of cancer was rising as more and more people were surviving the condition.

There is an enormous population of long-term survivors of cancer, many of whom are living with a range of symptoms
Professor Marie Fallon

She added that cancer survivors would suffer ongoing symptoms but often be confused about whether they were treatment-related or whether they were a sign the cancer had come back.

“Traditionally, palliative care has been aimed at one end of the spectrum where it is used to help patients near the end of their lives,” she said.

“However, there is an enormous population of long-term survivors of cancer, many of whom are living with a range of symptoms.”

“These patients exist in a limbo.

“They fall between two stools – they have finished being treated by oncologists, but are not receiving the care and support from palliative care teams that patients at the end of life receive.”

She added the ongoing problems, which included pain, swelling and depression could result in poor quality of life.

Better provision

Better integration was needed between oncology services and palliative care to prevent people falling through the gap, she said.

And there needs to be a clear agreement of where patients can access help and who should be responsible, she added.

Professor Alexander Eggermont, president of the European Cancer Organisation, said: “To be cured from cancer, but living with symptoms that are related to often complex multi-disciplinary treatments involving surgery, radiation therapy and chemotherapy is already difficult enough.

“To reintegrate into society, resuming work full or part-time adds to the complexities and socio-psychological pressure that an ever-increasing number of former-patients have to deal with.

“We better start tackling these issues now as they will only increase in number and magnitude.”

A Department of Health spokesperson said deaths from cancer in people under 75 fell by 17% between 1995 and 2006.

“The Cancer Reform Strategy published in December 2007, recognised that the services and support available to those living with and beyond cancer needs to be improved and announced the establishment of a new National Cancer Survivorship Initiative to deliver this.”

I can’t really capture very much from the inside of my head about this issue, but a couple of things do come to mind.

Firstly, I guess most everyone can look back to four years ago and say, “whoa, things sure are different now.” The last four years, for me, have been a bit like being caught under a truck and dragged along gravel. It really has been a spectacularly awful chunk of my life. And I also know that, in terms of cancer crap, it could have, and technically should have, been *so* *much* *worse*.
I find that notion hard to balance out inside my head. Like, I am actually grateful for my own good fortune and feel a deep grief for the women I know who have died from ovarian cancer over the last couple of years. But sometimes I get all spun around, thinking I ought to be more Lance Armstrong-like.
That stuff is weird. Because when I was doing chemo, I believed that all I had to do was survive the chemo and get the good test results and everything would be good again. Apparently the powers that be didn’t get that memo.
But whatever. We trudge along. And it will get better. I do believe that.
And I am lucky that my body took the chemo and responded the way the doctors had hoped.

So, I got told I had cancer on the Friday before Mother’s Day, four years ago.
Mother’s Day seems to hold enormous significance in this whole OVCA experience.
When I first started blogging about this, I connected up with some other women with OVCA. Many of them were extremely sad that this disease had prevented them from bearing their own children. One of those people was a woman named Cancerbaby.

Cancerbaby was brilliant. Like, stunningly brilliant. I have no idea what she did for a living, but she had amazing writing skills and a scathing wit.
And she really really really wanted to have kids.
She did a round of chemo, things looked good, then things stopped looking good.
Eventually, she died on Mother’s Day, three years ago.
I remember walking to my truck after hearing the news and just crying about the whole thing.

It’s a bit freaky to me that in the links section of this page, more than a couple of the links lead to pages that aren’t there anymore.
I guess I should take down the link, but I don’t really want to.

My friend Marianna died from ovarian cancer last fall. Now I’d like to tell you how completely insane it is to have someone in your circle of friends end up with the same toxic disease as you, when the odds of that happening are, what… 1 in 70?
I guess I know more than 70 women.
Anyway, that sucked.
I know it doesn’t work this way, but I sort of felt like couldn’t I just go through this and then no one else I knew would have to? Or perhaps my experience would make everyone else hyper-vigilant to the symptoms. Except the symptoms for OVCA are so vague, how could anyone be better equipped because of what I went through?
Anyway, it would be Marianna’s birthday this weekend, this mother’s day weekend.
I am going to go work in her garden, with her partner and her friends. We’ll go have her birthday for her.

And then there is the mother’s day without a mother, for the first time, for me.
My mom was so sick for so long, I sort of thought I had gone through 98% of the letting go before she even died. And that may be somewhat true. But the world is a stranger place now that I don’t have a mother.

So, that’s the inside of my head. And I don’t mean to be a big downer.
I do hope that other people go out and have some really good time with the people they care about. I think that’s what you should do. If I am trying to say anything at all, it’s that everything changes and people in our lives aren’t always where we would like them to be so we should enjoy what we have with them.
So, do that.
Okay?

Here’s how the Globe said it:

Ten countries co-ordinate cancer fight

CAROLYN ABRAHAM

Globe and Mail Update

April 29, 2008 at 12:14 PM EDT

Research groups from 10 countries are announcing today an unprecedented global effort to combat cancer, one of the world’s leading killers.

The collaborative project, dubbed the International Cancer Genome Consortium, will hunt the genetic mutations that drive 50 different types of cancer – from breast to bone. The consortium, in which Canada will play a lead role, plans to share results rapidly, widely and freely so scientists can quickly develop new diagnostic tests and treatments to counter them.

Each member country plans to spend roughly $20-million (U.S.) tackling at least one subtype of the disease, collecting specimen samples from 500 patients, and studying the genetic glitches they find in their cancerous cells. With 50 cancers to be studied, not all of them have been assigned a country yet.

But China, for example, intends to study liver cancer, since the country has particularly high rates of that disease. Japan will take on gastric cancer. India has an interest in oral cancers, France in sarcomas – cancers of the bone and connective tissue. Several countries will focus on breast cancers, including Britain and the United States, where research groups are also interested in brain and colon cancers.
Internet Links

* International Cancer Genome Consortium Popup
* ICGC Goals, structure, policies and guidelines (pdf) Popup

The Globe and Mail

Canada, which is to store, crunch and share all the data collected, will take on the pancreas.

”We picked a hard one,” said Dr. Tom Hudson, scientific director of the Ontario Institute for Cancer Research in Toronto, which will be the project’s home base as the ICGC Secretariat. ”There’s been research (into pancreatic cancer) but not much success. There’s just no survivor community.”

Dr. Hudson, who has helped to spearhead the consortium, noted pancreatic cancer is the 12th most common form of the disease, but one of the deadliest. More than 98 per cent of patients die within six months after diagnosis.

”In 2008, there will be 3,800 new cases and 3,700 deaths in Canada,” Dr. Hudson said. ”It’s almost always found too late.”

The consortium has come together in a whirlwind of meetings, conference calls and funding commitments during the past six months, driven by swift advances in computing technology that allow researchers to rapidly and cheaply read DNA. It is expected to amass 25,000 times more data than the international Human Genome Project, which produced the first draft sequence of human DNA in 2001.

DNA, the three-billion-chemical base-pair code that contains the operating instructions for human life, can be found in the nucleus of nearly every cell in the body. In cancer cells, however, that genetic code can be riddled with hundreds of mistakes, spawning cells that can multiply madly into deadly tumours.

”We know when you look at cancer cells, there can be thousands of mutations in that tumour cell…that were not inherited,” Dr. Hudson said. Specifically, he added, scientists are chasing the ”driver mutations” that allow a cancer to grow and spread and these are often different in different types of cancers.

Certain mutations have already proved worthwhile targets for treatment. Dr. Hudson pointed to the successful drug Gleevec as a prime example that has triggered remission in many patients. First approved to treat chronic myeloid leukemia, Gleevec works by blocking the abnormal version of a protein that a certain gene produces in the leukemia patients.

The treatment, which has since also been approved to treat a form of gastric cancer, represents a new class of drugs that selectively kill cancer cells without harming healthy ones. The lauded breast cancer drug Herceptin is another example of a therapy that selectively targets a specific molecule over-expressed in malignant cells.

There are few other examples, however, of such effective therapies, Dr. Hudson said, largely because it has been slow and expensive to find targets. He estimates that the consortium will run a 10-year effort, but ”we don’t have to wait 10 years (for a result), we will release it as we find it.”

The results will be made available to researchers worldwide and all those involved in the consortium have agreed ”not to file any patent applications or make other intellectual property claims on primary data from ICGC projects.”

The Ontario Institute for Cancer Research, with a five-year, provincially funded budget of $347-million, plans to spend $30-million on the project. At a press conference Tuesday morning, however, Ontario Premier Dalton McGuinty said the province will also contribute an additional $10-million to fund the OICR’s role as Secretariat.

Mr. McGuinty noted that Ontario, as a sub-national government, beat out the United States and Britain to lead the ICGC, and is essentially punching above its weight.

”Cancer is devastating to families and that’s why we’re doing all we can to help save lives,” Mr. McGuinty said. ”This investment puts Ontario at the forefront of international research that will save lives around the world.”

The money has so far allowed the institute to purchase 10 ultra-fast DNA-sequencing machines and lure top talent from the United States to take on the task. Among those recruited for ICGC job to Toronto, Dr. Hudson said, are Lincoln Stein, a pathologist turned bio-informatics ”guru” from Cold Spring Harbor, N.Y., and John McPherson, a Canadian scientist returning home from Baylor College of Medicine in Houston after 20 years in the United States.

Dr. Hudson said it is hoped the federally funded Genome Canada will contribute more money for the project, which would allow Canadian researchers to study other cancers, namely those of the brain and ovaries.

”We don’t want the pancreas to be the only one we do,” he said. Dr. Hudson is no stranger to science on a massive scale, having played an early role in the human genome project, and the international Hap Map, which was the first effort to chart genetic differences between four of the world’s major ethnic populations.

Duplicating efforts by studying the same cancer types in different countries is crucial, Dr. Hudson said, because ”tumours of the colon look different in Singapore than they do in Toronto.”

Researchers suspect environmental, dietary and genetic differences can impact the way cancers develop in different regions of the world.

More countries are expected to join the consortium in the coming months. The list so far includes: Australia, Canada, China, Europe, France, India, Japan, Singapore, the United Kingdom and the United States.