I don't need a war to fight my cancer. I need empowering as a patient
by Mike Marqusee guardian.co.uk
Tuesday 29 December 2009

quote:

Obituaries routinely inform us that so-and-so has died "after a brave battle against cancer". Of course, we will never read that so-and-so has died "after a pathetically feeble battle against cancer". But one thing that I have come to appreciate since being diagnosed with multiple myeloma (a cancer of the blood) two years ago is how unreal both notions are. It's just not like that.

The stress on cancer patients' "bravery" and "courage" implies that if you can't "conquer" your cancer, there's something wrong with you, some weakness or flaw. If your cancer progresses rapidly, is it your fault? Does it reflect some failure of willpower?

In blaming the victim, the ideology attached to cancer mirrors the bootstrap individualism of the neoliberal order, in which the poor are poor because of their own weaknesses – and "failure" and "success" become the ultimate duality, dished out according to individual merit.

It also reinforces the demand on patients for uncomplaining stoicism, which in many cases is why they are in bad shape in the first place. Late diagnosis leads to tens of thousands of avoidable deaths in the UK each year. For those who have been diagnosed it remains a barrier to effective treatment. The free flow of information between patient and doctor is a scientific necessity, and a reluctance to complain inhibits it.

Earlier this year Barack Obama vowed to "launch a new effort to conquer a disease that has touched the life of nearly every American". In so doing, he was intensifying and expanding a "war on cancer" first declared by Richard Nixon in 1971. But this "war" is as mislabelled and misconceived as the "war on terror" or the "war on drugs".

For a start, why must every concerted effort be likened to warfare? Is this the only way we are able to describe human co-operation in pursuit of a common goal? And who are the enemies in this war? Cancer cells may be "malignant" but they are not malevolent. Like the wars on "drugs" and "terror", the war on cancer misapplies the martial metaphor to dangerous effect. It simplifies a complex and daunting phenomenon – making it ripe for political and financial exploitation.

In the war on cancer, the search for the ultimate weapon, the magic bullet that will "cure" cancer, overshadows other tactics. Nixon promised "a cure for cancer" in 10 years; Obama promises one "in our times". But there is unlikely to be a single cure for cancer. There are more than 200 recognised types, and their causes are myriad. As a strategic objective, the search for the ultimate weapon distorts research and investment, drawing resources away from prevention and treatment, areas where progress has been and can be made.

Like other wars, real and imagined, the "war on cancer" is a gift to opportunists of all stripes. Among the circling vultures are travel insurers who charge people with cancer 10 times the rate charged to others; the publishers of self-help books; and the promoters of miracle cures, vitamin supplements and various "alternative therapies" of no efficacy whatsoever.

But most of all, there's the pharmaceutical industry, which manipulates research, prices and availability of drugs in pursuit of profit. And with considerable success. The industry enjoys a steady return on sales of some 17%, three times the median return for other industries. Prices do not reflect the actual costs of developing or making the drug but are pushed up to whatever the market can bear.

Exorbitant drug prices are at the root of recent controversies over the approval by the National Institute for Clinical Excellence (Nice) of "expensive" cancer drugs – notably Revlimid, a therapy used in the later stages of a number of cancers, including mine – and top-up or "co-payments" (allowing those who can afford it to buy medicines deemed too expensive by the NHS). "We are told we are being mean all the time, but what nobody mentions is why the drugs are so expensive," said the Nice chairman, Professor Michael Rawlins. "Pharmaceutical companies have enjoyed double-digit growth year on year, and they are out to sustain that, not least because their senior management's earnings are related to the share price."

Many cancer therapies are blunt instruments. They attack not only cancer cells but everything else in sight. This is one reason people fear cancer: the treatment can be brutal. Making it less brutal would be a huge stride forwards for people with cancer. And that requires not a top-down military strategy, with its win or lose approach, but greater access to information, wider participation in decision-making (across hierarchies and disciplines) and empowerment of the patient.

Because I live in the catchment area for Barts hospital in central London, I find myself a winner in the NHS post code lottery. The treatment is cutting-edge and the staff are efficient, caring and respectful. What's more, I live close enough so that I can undergo most of my treatment as an outpatient – a huge boon.

Cancer treatment involves extensive interaction with institutions (hospitals, clinics, social services, the NHS itself). Even in the best hospitals, the loss of freedom and dependence on anonymous forces can be oppressive. Many cancer patients find themselves involved in a long and taxing struggle for autonomy – a rarely acknowledged reality of the war on cancer, in which the generals call the shots from afar.

As Susan Sontag noted, in the course of the 20th century cancer came to play the role that tuberculosis played in the 19th century – as a totem of suffering and mortality, the dark shadow that can blight the sunniest day. But the ubiquitousness of cancer in our culture is of dubious value to those living with the disease. The media love cancer scares and cancer cures; they dwell on heroic survivors (Lance Armstrong) and celebrity martyrs (Jade Goody). But as Ben Goldacre has shown in his Bad Science column, they routinely misrepresent research findings, conjuring breakthroughs from nothing and leaving the public panicked, confused or complacent.

What we need is not a war on cancer but a recognition that cancer is a social and environmental issue, requiring profound social and environmental changes.

Thanks Vinod I enjoyed reading this interesting article.
My blood used to boil everytime someone said to Trevor or myself 'you just have to think positive'. So what? If your cancer gets the better of you, it's your own fault and you have no-one to blame but yourself? Arrrgghhh
I know just where this guy is coming from.
Have a great New Year Vinod. Best wishes to Sue and your family.
Deborah
x

I thought this was a great article, and indeed I believe that prevention is the best cure for many things, not just cancer. Spending more on informing/educating people to prevent them getting ill, or to find their illness early, would save huge bills in treating them, including of course reducing the massive amounts spent on over-priced pills.

On the other hand, I DO believe in the power of positive thinking. No, it hadn't occurred to me that if I'm positive and I still don't get well, then it's my fault; but it had occurred to me that if I get well, then I can feel proud of myself, as well as grateful for the wonderful care I get.

Note, I'm in France but also a winner on the post code lottery here, being within 10 minutes drive of the Val D'Aurelle, where I get my radio therapy, and not much more from the Gui De Chauliac where I was operated; both are renowned centres for cancer treatment and research in France, and rated in the top 10 hospitals in the country. I am very thankful indeed for this!

I really hated the phrase "I suppose you have to live one day at a time"!!!

Don't we all have to anyway!!

And my GP told me I was "brave" .
Bravery is a life threatening situation where you have a choice whether to undergo it or not. I had no choice.

Personally I am a wimp and a coward with a low pain/discomfort threshold - and morphine gives me intense and painful constipation!!

tony k

PS I do understand that the above people were extremely well intentioned when they offered me their support in the manner that they did.

The truth of the matter is that people find it very difficult to say anything to a person they know is a cancer sufferer. I'd rather something was said rather than sweeping it under the carpet as if it (and you?) did not exist.

Tony k

This message has been edited. Last edited by: tonyk,

Definately a very interesting article Vinod.
I believe in the positive thinking thing, it's what kept/keeps me going.
I was lucky with the NHS lottery too. My surgery, RT and hyperbaric oxygen therapy were all done within 15 minutes from my house. That probably helped keep me alive too .

quote:

They attack not only cancer cells but everything else in sight. This is one reason people fear cancer: the treatment can be brutal. Making it less brutal would be a huge stride forwards

This is my biggest problem now the aftermath of radiotherapy so many medical problems.
Not sure if they will find a cure for Cancer but should maybe concentrate on people living with Cancer more.
I am 9 years down the line and people say to me " you should be over it by now " I cannot eat properly, talk properly, Eat with a teaspoon, Constant pain, Constant fatigue, sleepless nights the list is endless. The theres the medicine they give you NOT telling you of the after effect of some medicines which cause more trouble that the first problem.
Personallly I cope by lving one day at a time and not worring abolut tomorrow as it is yet to come, Yesterdays gone so there only today for me.

I totally agree with Paul. Nearly 6 years on from my diagnosis I still can't eat properly, cold weather causes havoc with facial nerves, can't lift my right arm above my head. Yet I keep being told I should be back to normal now - if only! Not enough thought is given to the long-term effects of cancer treatment. I think I have a positive outlook but no amount of positive thinking is going to restore my tastebuds, increase my saliva and help my problems swallowing!

Sheila

There's a US etiquette columnist and author (pseudonym is Miss Manners) who wrote an article about the reactions of others to her breast cancer. I copied and saved most of the srticle as well as a few comments. There's a great Winnie the Pooh quote at the very end. Although it is about b/c patients, it is true for all of us.

************

An unpleasant side effect of cancer is that whoever gets it will be characterized thereafter as victim and a loser. And that, Miss Manners has observed, is on the part of well-wishers.

...Therefore the more popular metaphor is that of warfare. People with cancer are said to be 'fighting' or, more often, 'battling' the disease. It sounds more dignified....

All the same, everyone eventually dies of something....You can be sure mourners will sum it up by saying, 'She lost her battle against cancer'..Whatever is said about the person's pre-cancerous or extra-cancerous life takes second place... Being sick is nether a character trait nor an occupation.

People with the best intentions in the world continue to speak of those they care about as battling cancer and when it comes to that, losing. Furthermore, the well-wishers throw themselves into the wartime spirit. They make nuisances of themselves telling wartime hero stories about people who overcame the disease, proposing tactics such as other treatments and urging the warriors on to fight harder.

But these are not warriors and disease is not a fight, much less a fair fight. Sick people do not need the implication that better strategizing and fighting harder would lead to victory. When they need is the recognition, expressed in countless different ways, that they are still the same individuals they were before they got sick.

I felt like I was more interesting to her "sick" than when I was "healthy."

The real issue, I think, in trying to come up with a good answer is why the person is asking the question. A lot of them ask because (I fear) they really want us to go back to being the people we were before we were diagnosed. Well, I have news for them... that ain't gonna happen. Cancer is a permanently life-altering diagnosis. We will never be quite as carefree, never as blindly confident of our own good health

I think most people who ask me this question are asking out of concern and out of ignorance about the nature of breast cancer. They want to hear that everything is okay now. I usually just say "I feel great"--but if they ask if I am now cancer free, I feel like I should be honest. I say I have a good prognosis, but that they can never tell you for sure that it won't recur. I think people should know what the danger of breast cancer is--recurrence in other parts of the body.

*****************

One of the things that really bugs me is people telling me - "you will be fine" ( how do they know?? they know ‘nuffin about MY cancer ) and jumping in right away with the words " having a positive attitude is everything" (i do have a positive attitude and find that kind of comment dismissive and rude. and doesn't allow for time when you need some comfort and empathy for how hard this can be - no one can be UP all the time). Yes, a positive attitude helps cope but it is treatment and surgery that makes a person cancer free. I think it is the person’s own fears over cancer and death that makes them say things like this.

I was at the Gym this week and there is a nurse there who had BC and she kept saying to me- OVER and OVER again- "You will be fine- I had worse cancer than you- I am much worse than you- Yours was nothing compared to mine..." I finally said "Ok- you win the contest. How do you feel now?"

The OTHER question I HATE is:
"So, um, how did you get the cancer?"

Ebay?



I was reading through an old A.A. Milne (Winnie The Pooh author) book last night and came upon this poem. It made me think of this thread:

Politeness

If people ask me,
I always tell them:
"Quite well, thank you, I'm very glad to say."
If people ask me,
I always answer,
"Quite well, thank you, how are you today?"
I always answer,
I always tell them,
If they ask me
Politely....
BUT SOMETIMES

I wish

That they wouldn't.

What a fantastic Winnie the pooh quote.

When I went back to work I found one person repeatedly asked if I was 'better now', so that in the end I agreed. It was easier than telling the truth. I had had surgery, Radio and chemotherapy, and I had no detectable cancer, but no-one can ever say that you are completely better. But I gave them the answer they needed to hear, rather than the truth.

Many people are very judgemental about cancer. They seem to believe it's your fault you got cancer. Everybody asks if I smoked when they first hear I had cancer. I started smoking when I was a foolish teenager, who didn't want to live until she got old anyway. I gave up when I had my son, but I also chewed nicotine replacement gum for many years after I gave up smoking. No-one seems to know about the other risks that can lead to cancer, and I have never been told what caused my cancer.

The 'battle' against cancer is a great misconception. I am sure that we have all had dark days that we don't like to remember or talk about. Most people will only see us on our good days, on the bad days we don't go out of our home, and very few people know quite how bad everything was. Every check-up can bring back overwhelming emotions. I have had CAT scans, and ultrasounds, which I driven to in tears. I have been unable to sleep whilst awaitng results of these tests, and I have had to take sleeping tablets to carry on with day-to-day life. My partner has supported me throughout, although on more than one occasion he was surprised when I told him that I was going for a test and I asked him if he would come with me. I know that he knew I was booking the test, but I think he blanks it out. I haven't even told my close family about these check-ups and follow up tests, so they were very surprised when I phoned them up to let them know I had been given the all clear at my last check-up, and didn't need to come back every 6 months anymore. Even they thought that I had been 'cured' when my treatment ended.

In no way could I say that I have won the battle against cancer. Cancer appeared to strike out of the blue, and I coped with the disease and the treatment as best as I could. Some days were ok, and some weren't. I may have appeared to have a positive attitude, but this has just been because I haven't told everybody about just how awful it can get. We all know, and it is a relief to know that this community is here when I need to talk honestly about it.
Thanks for being there for me, and listening when I needed it.
Jenni

Hi Jenni

You're right--people do tend to be judgmental about cancer, especially this group of cancers. That's why we get a lot of "heads up" questions as I like to call them (because the askers often have their heads up their...well, you get the idea). I've often wondered if those same well-meaning folks who want to know about our smoking/drinking/anything-else-that's-none-of-their-business habits would approach someone with cancer south of the clavicle and ask about their particular habits and practices.

My soap box has been put away.

Julia