Monday, January 11, 2010

"Cancer is no longer a question of life or death"

Finally someone has something to say about living after cancer treatment. The piece on Woman's Hour today was excellent, it mentioned the fatigue, chemobrain/the cognitive effects, gastric problems, heart problems etc.

Don't get me wrong - the alternative isn't great, but some guidance on how to recognise long term effects of potent treatments would be very welcome, especially when most of us are constantly tuning into bodies that have already let us down.

Also welcome Barbara Ehrenreich's latest book, Smile or Die, which "confronts the insistence on positive thinking and blind optimism endemic in American society. She argues that a culture of relentless cheerfulness and the misguided belief that optimism can influence outcomes has had a negative impact on business, religion, academia, and even medicine. Barbara Ehrenreich looks at a corporate culture where positive thinking has replaced job security and argues that unquestioning optimism was in no small part to blame for the financial crisis."

Smile or Die: How Positive Thinking Fooled America and the World is published by Granta.

If you know someone who has just been diagnosed please don't immediately ram the "be positive" message down their throats, they need space to assimilate the information, and they are also entitled to grieve for their prior life and self.


Blogger Lucy said...

Do you think there's a bit of denial about the long term effects? That the medics don't want to discourage people too much or something, or that they don't follow them long and carefull enough to bother to monitor them?

The Ehrenreich book sounds really interesting. I sort of get the feeling there's something of a backlash to the relentless positive thinking culture, but then again it lets a lot of people off the hook doesn't it? If something goes wrong it must be the person it went wrong for's fault for not being positive enough. It's a kind of Job's comforting really, in effect implying that the victim must have done something to offend the god of optimism. I think it might be time for a return to a more solid kind of stoicism, which is perhaps more conducive to genuine serenity and measured cheerfulness.

It's so good to have you back, the break has clearly done you good, and you've brought a wealth of great stuff back with you!

1:59 pm  
Blogger savannah said...

when i wasn't sure what was going on about the possibility of having breast cancer, the best thing that happened to me was my husband saying "i'm scared and i don't want you to pretend that you aren't, too!" it was as if just giving ourselves the time/chance/ability to let the emotions flow and NOT be positive that everything was going to be ok, was in fact, ok! after that, we could go on and see everything as win-win, no matter which way it came down.

thank you for this and for the book. i'll look for it! xoxox

4:57 pm  
Blogger Rachel Fox said...

One of my oldest best friends had several treatments and mentions often how her body has changed as a result.

Also someone I vaguely know was diagnosed recently and I longed to send her your 'Transported' poem that I love so much. But I didn't (not yet anyway) because I know (from friend mentioned above) that being bombarded constantly with 'helpful' things can be a bit much, especially early on.


5:22 pm  
Blogger Rouchswalwe said...

My mother recently had hip replacement surgery, which with her other health problems had me quite worried. But only one person had the courage to be concerned with me; everyone else told us she'd wake up from the surgery pain free and that she should be positive to recover fully. Well, the recovery so far has been terribly difficult for her, and it's sad to hear people say things like, "oh, she's still in pain? Oh well, she'll be allright." A mere 3 weeks after her surgery, most folks have stopped asking how she is doing. Around here, if you don't feel better fast, you're not trying hard enough. I'll look for that book, Smile or Die. Sounds like the author is on to something there.

7:39 am  
Blogger Pat said...

You are one of the busiest, creative person I know so you won't be looking for extra work - but you would be a great choice to write a book on how to behave with cancer patients whether they be family , friends, strangers or aquaintences.

10:51 am  
Blogger Pat said...

Glad to see you're enjoying Nurse Jackie also. It's a must for me.

10:55 am  
Blogger apprentice said...

Lucy - I think the cancer docs know you have a long road in front of you and that you need to be able to deal with what's immediately in front of you as that is enough. But at the end of treatment I think it would not be unreasonable for them to tell you what to look out for, or to get back in touch if you suspect a side effect. Macmillan are also recommending that hospital give GPs full details of treatments received - in summary form. You think this would happpen already, but it doesn't seem to. The other problem is the churn factor in medical staff, stay alive long enough and no-one will around who knows anything about you.

Maggie's Centres do a great job supporting cancer patients, but they shouldn''t need to do it all, the system should do more. There is still a huge need to treat people holistically, as people and not a set of symptoms.

Savannah your approach was a good one, I'm so glad that it didn't have to stand the test of time, and I'm sure it will enrich whatever comes after the experience.

Rachel I know just how your friend feels, I vacilliate between wanting to know and wanting to forget. Transported is more about waiting - the scary evidence that you life is no longer in your control -plus at the clinic we have to sit in the same room where we got our initial diagnosis -it's like returning to the scene of a crime!

R - you've hit the nail on the head, no room is left for set backs or a lousy prognosis. There's a place for a positive outlook, if that means doing the physio, listening to medical opinion etc, but there is also a place "shit happens"!

Pat thanks for thinking so highl of me, but this is an area flogged to death -the trouble is those who need to know don't want to know. The enlightened will try to learn more, the scared etc will keep their head in the fire-bucket, and perhaps they have every right to.

My cancer buddies, both no sadly no more liked this advice, although no, with hindsight I think it is maybe a little too "nippy" - it's called Angles and Bolters

12:35 pm  
Blogger Crafty Green Poet said...

I think positive thinking can be unhelpful, informed realism is possibly a more useful attitude and there needs to be space for anger, negativity, depression etc even though it would be unhelpful to get stuck in one of those negative spaces.

I'm thinking not just about individuals' attitudes to illness but also attitudes to the world situation...

11:16 am  
Blogger Guyana-Gyal said...

Your post here and Pat's comment connect to something I read last was a list of things a person should / should not say to someone who's been diagonosed with cancer. One one the list - people should not shove the 'be positive' mantra down the patient's throat.

One of my favourite cousins still in Guyana [almost all my family has migrated], has lumps in her breast and we're praying it's not cancer.

10:45 am  
Blogger Guyana-Gyal said...

This comment has been removed by the author.

11:14 am  
Blogger Guyana-Gyal said...

About positive thinking...I think it's gotten misunderstood / warped by many.

It's actually not about being cheerful all the time and pretending that something bad / negative isn't happening.

True positive thinking is more like what Lucy says: stoicism, which is perhaps more conducive to genuine serenity and measured cheerfulness.

So you're right when you say don't immediately ram the 'be positive' message down someone's throat - because most people are shoving the 'be cheerful' mantra without even knowing what positive thinking is all about.

'Positive thinking' is more about acceptance, it allows for 'fears, time to assimilate the information, to grieve'.

The reason why I'm so interested in this is because it's helped me to survive dangerous times here, and to keep going, creatively.

11:22 am  
Blogger Kay McKenzie Cooke. said...

Lovely to catch up and read about the snow and other happenings in your interesting world.

11:41 am  
Blogger apprentice said...

CGP - I completely agree about it being more than individuals, and that's why I've said before that I'm so disappointed that the reaction to the downturn seems to be "more of the same".

GG, you are right that true positive thinking is much more than being cheerful. And I can see that you are a true example of someone who thrives despite difficult circumstances. I'm afraid I'm work in progress on that front. But I do try to look life square in the eye, and sometimes I wonder if that is counter-productive, maybe it doesn't help sometimes to "sugar the pill".

Looking at the Haiti experience of the last few days certainly helps one put life into perspective. We have nothing to complain about really. And it proves the point that without the basics.

One last point on Ehrenreich, she said on the radio that she's met cancer patients who felt that they were dying from the lack of their ability to generate enough positive energy - I've come across that too - when what they had was a nasty highly aggressive cancer. No-one should go to the grave feeling that way.

12:37 pm  
Blogger Guyana-Gyal said...

Me too, like you, I'm a work in progress, trying, learning to be positive.

That's sad, that patients feel that they were 'dying from the lack of their ability to generate enough positive energy'. Imagine a li'l flu washes out most folks, and we find it hard to be of good cheer...

1:54 am  

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