Guardian Comment is Free piece on living with secondary bc

Hi Everyone,

Yesterday Guardian Comment is Free ran an article that I wrote on secondary bc and its portrayal in the media which i hope you will find interesting. Please be gentle with me as im not a journalist…

guardian.co.uk/commentisfree/2010/may/11/stop-portraying-breast-cancer-patients-victims.

Very well put Candide - an excellent article. Have you had any responses to it elsewhere?

Well done Canadide

Louise

Very well done. You make very important points and it is also well written, in a sensible style that should not alienate non-cancer sufferers (sometimes being too strident in getting the message over can be an own goal, but I think you have got the tone just right).

I hop there are more articles from you in the future!

Sarah

Hi

Read this yesterday and posted it on my Fb page. Well done
a lovely piece of writing that says it how it is.

Linda

Hi Candide, I loved the article. Well done you. When I got diagnosed with bone mets…I thought that I hadn’t got long to go. Well just like you said, new chemotherapy regimes and drugs have kept me going. I was diagnosed with mets in 1999 and 11 years on I am still getting on with my life. I do get tired and it hasn’t always been an easy time but I am delighted still to be here and still enjoying my life.I no longer work but enjoy the simple things in life. I don’t have the courage to write an article for a newspaper so thank you for getting our views put across to the masses. Thanks Val

Candide,
I think you managed very well to show that being “healthy” is not necessarily about being free from disease - any disease, that is, not just cancer. Being healthy is about much more than whether you have a condition or not - its how you choose to manage it that matters and how you view yourself and your life; You are clearly living a very full and active life and see your condition as a chronic problem rather than terminal illness, which gives it a different stance and hopefully, change the views of those who have read the article. Far from feeling sorry for the “cancer victim” you have a life that most people would be more than happy to live.

Great article Candide. I’ve been living well with bone mets for seven years now. I truly have not had an ill day in bed since my diagnosis. I plan ahead and don’t give much thought to funerals and death. I’m not a head in the sand girl, I’ve lost too many friends to this wretched disease. All lived as best and as fully as they were able to…cancer patients but not cancer victims. I’m not super positive, I’m just lucky to have had good responses to treatments which have lead to years of inactive cancer. My neighbours have no idea I have cancer. I was diagnosed in 2003, stage 4 from the beginning, I was in my early 40’s. My hip spontaneously fractured and I had a very succesful hip replacement alongside my cancer diagnosis. At the time of my diagnosis I quickly realised the last thing I wanted to be seen as was a cancer ‘victim.’ To me a victim is someone passive who has no control over what is happening. I’m a self confessed control freak and I decided from the very beginning however long I had left I was going to be me…the same as always albeit a woman living with cancer. Sooner or later we will all die and while I’m still able to I’m LIVING with this rotten cancer. Live Well and Lots of Love…xx

Fantastic article Candide. Reading that today has helped me no end - bone mets diagnosed last year, still working and love my life and want to live it as normally as possible for as long as I can. Thank you for writing an article that doesn’t write us off with that diagnosis.

Love Anne xx

Hi Candide – thanks so much for your excellent article in the Guardian’s “Comment is Free” section. It clearly raised the issues facing those of us with BC mets (I’ve been living with liver & bone mets for over six years), as did many of the comments attached to your article.

More people – especially health providers and those funding our support charities – need to hear the detail of our lives, acknowledge that our care & support needs are often different from those with a primary dx, understand that we seek a reasonable quality of life but not ignore the unreasonable shortness of our lives.

And bravo for the comments above as well!

Marilyn x

Im so glad that you all liked it… Our experiences can sometimes be so different that i was nervious about speaking up for all but am glad i did. The biggest thing like you say Belinda is the sense of powerlessness that goes along with the ‘victim’ label. Challenging this has nothing to do with being super-positive as some of the posters below my article said. I dont know how long i’ve got but just because its more than likely the cancer will get me in the end, my outlook simply is to try not to let that change the way I live my life now whilst I feel well.

Wishing everyone all the best,
Heather

I echo all the comments on here, well done!
Quite new to all this myself as only dx with bone mets in March but do feel the way you’ve all described, just trying to get on with things and be as normal as possible.
Hope you all have a good day.
Julie x

Congratulations on a well written article. I totally agree with you that when we see celebrities having breast cancer and then getting the ‘all clear’, it gives the impression that that’s the way breast cancer is these days, and I too feel no-one hears about us with stage 4 trying to lead a normal life throughout the numerous treatments and hospital appts. Well done for giving us a voice.

I wish you many more years of ‘normal living’ (I could never be a journalist, can’t find the right words).

Linda

Hello again Candide and all. I was reminded, after reading your article, of a poem by Julia Darling, the poet and novelist who died of breast cancer a few years ago. If BCC will let me post her blog address it’s juliadarling.co.uk/weblog/index.html

I had an email friendship with Julia until she died and this particular poem by Julia is one of my favourites.

How To Behave With The Ill
Approach us assertively, try not to
cringe or sidle, it makes us fearful.
Rather walk straight up and smile.
Do not touch us unless invited,
particularly don’t squeeze upper arms,
or try to hold our hands. Keep your head erect.
Don’t bend down, or lower your voice.
Speak evenly. Don’t say
‘How are you?’ in an underlined voice.
Don’t say, I heard that you were very ill.
This makes the poorly paranoid.
Be direct, say ‘How’s your cancer?’
Try not to say how well we look.
compared to when you met in Safeway’s.
Please don’t cry, or get emotional,
and say how dreadful it all is.
Also (and this is hard I know)
try not to ignore the ill, or to scurry
past, muttering about a bus, the bank.
Remember that this day might be your last
and that it is a miracle that any of us
stands up, breathes, behaves at all.

Julia Darling