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Monday, 1 April 2013

What not to say

I have been at the end of some well meaning love and advice over the past few weeks, with the return of my cancer and the following blog may sound snippy and ungrateful but here goes anyway.

People who have got cancer diagnosis are in shock, pain and fear.  If you haven't gone through this particular circle of hell, you cannot begin to empathise, no matter that your mother/sister/cousin/best friend has been through it.

There is an unspoken trembling acknowledgement of the full stop to which an old life has come and a new life has to start that passes between two people with the same diagnosis.  If you haven't been there, trying to make someone feel that you "know how they feel" because you have seen other people through this particular phase of their life cycle, is actually rather unkind.  

People who are facing a cancer diagnosis do not need to comfort other people, dry their tears or have to tell them that "it will be alright".  Nobody knows whether it will or not.  I want to dedicate the time and energy to my children and my husband and for us to work through this together.  Teary eyes and snotty noses are not for me.  If you want to cry, go ahead but not near me.  I have run out of tissues.

This is not a competition.  Cancer is cancer.  The statistics are getting better but the raw data is breast cancer is the most common cause of cancer deaths in Age 15-49 year old age group among women in the UK.

The overall survival rates are as follows.  Statistics tend to be about 2-3% lower for the 15-49 year old women category:

1 year (done that one) 95.8%
5 years                         85.1%
10 years                       77.0%

That means that nearly 1 in 4 women will die of breast cancer within 10 years of a diagnosis, whatever the treatment.  I know there are women who have survived for 40 years.  I know there are people who live with Stage 4 for over 5 years.  Please don't tell me again.  I do have Google and, of course, I have searched and researched the topic extensively.  However, a breast cancer diagnosis is not something to be brushed off with a "at least they caught early and Aunt Eve lived until she was 104".  Catching it early is a good thing.  Getting it at an early age (under 50) is not.  Fact.

It is a ticking time bomb.

Which leads me on to my next point.  If anyone else tells me that it is all about positive mental attitude, I swear I shall put my head in a gas oven.  The relationship between psychology and physiology is a complicated one.  No one really understands how cognitive processes work in a situation such as this.  Show me the data....

My view?  There seems to be two types: those who accept that a cancer diagnosis could mean that they are on a limited time frame in the "life" department; and those who choose to ignore it and live in denial.

Neither is right or wrong. 

Those who are accepting are more likely to make plans, organise and accept that they may have a limited time in which to live (ACT?).  There is nothing wrong with that.  To then ask them to "be positive" and not to be "so silly.  You're going to be fine." is actually quite insulting.

Those who are in denial are in denial.  Perhaps praising them for being so positive helps?  I don't know.    Try and make sure you know which sort of person your target cancer pal is.

The best friends are those who actually do, rather than ask.  The ones that arrive with a cake and some food (you know who you are!), flowers, a cushion, chocolate or for a cup of tea and a chat, with no expectation of entertainment, other than a kettle and a mug. 

People who send you long emails or keep you on the phone asking YOU to tell them what to do are actually a burden.  Send a postcard.  Pick up the children from a party.  Offer to teach the kids how to drive.  Cook a meal and say "If you're up to it, there will enough for you all on Sunday.  If you're not up to it, just let us know on Sunday morning.".  

I may look well.  I feel terrible.  I am  not interested in your opinion on how I look.  I will not be flattered that you think I "look great" especially when I have spent 3 hours plastering on Touche Eclat.  My physical appearance is pretty darn immaterial in the grand scheme of things.  

Please listen to what I ask.  If I say, please do not touch me on my right hand side, this is a non-exception rule.  I don't care how gentle you think you are or how much you think you love me.  It hurts to have my right arm rubbed and patted.  It is not a comfort.  If you would like a pain comparison, a pat on the upper arm equates to being hit below the collar bone with a claw hammer.  Just saying.

I don't want to talk about it all the time.  I do have other stuff in my life.  Feel free to tell me interesting snippets of news and what an idiot your child/husband/mother has been when they shut themselves in the deep freeze/lost the alarm keys for work/went scuba diving in Weymouth in January or send me emails of stupid dog videos or your new hair cut or the snow.  Please don't send me inspiring stories of cancer survival against all the odds.  Or, in one particular case, a book telling me that I could cure my cancer if I stopped all treatment and ate the correct nutrition for my blood type.  Yeah right.  (Please read Bad Science by Ben Goldacre to learn more about the charlatan con approach as suggested by these books.)

Sometimes, I do want to talk about it and it is really tough stuff.  If you are my friend, you will listen.  If I am telling you tough stuff, it is because I love and trust you.  Take it as a compliment, not a burden.

I don't really care if you talk about me behind my back and dissect my life and all the things I should have done to "prevent" getting cancer.  I don't really care that you feel sorry for me and my "poor family".  Why?  Because these are your feelings and your problems, not mine.

I have a life to get on with......

8 comments:

  1. I know I shouldn't be giving you unsolicited advice after all that, but please, however annoying we all are, don't put your head in the gas oven, it's North Sea gas these days not town gas and it won't poison you, just smell awful and possibly explode should someone turn the light on ;-)
    Love you and will try to get it right in supporting you, will probably get it wrong. Quite enjoy teaching coordinated children to drive so, if yours are, send them my way.

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  2. Thanks for some straight talk.Best wishes to you.

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  3. Here's a funny anecdote for you Charlotte. The other day I was phoning teenagers for a top secret mission (seriously, paranoid multinational company says I can't say where I work or what I do on FB/blogs etc. Lol), as per my boring call centre job. I rang this one number to speak to some kid's parents, and the conversation went something like this:

    Me - hi, am I speaking to one of X's parents?
    Random lady - who, dear?
    Me - X. Sorry, is this a wrong number? Do you know an X?
    Random lady - I don't know any Xes dear, this is a secure unit for crazy old people (her words, not mine!)
    Me - oh goodness, sorry to bother you!
    Random lady - don't worry dear, you're the first person I've spoken to all day, you sound very nice.
    Me - ...

    Some idiot in my workplace had copied down a 4 where a 9 should have been in a phone number, which made the difference between a family home in West Sussex and a psychiatric hospital in Brighton. Oops...

    Despite being a delicate little flower, I would take it as a compliment if you pulled me up on something stupid I'd said, because you know people value you when they take the time and effort to put you straight rather than roll their eyes and move on. Love you and stuff x

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  4. Oh dear i have a feeling that an over the ponder like me might say things that just don't translate well...Thanks for the reminder to all to insert sensetivity chip and do more, speak less......

    The truth is no one has ever been where you are right now before. And no one will ever again.

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  5. I am so sorry I missed this one, Charlotte... I have not been on Facebook much over the last few days.

    I find it helpful that you have written this, because I never quite know what is the right thing to say. What is right for one person is not always right for another.

    You are a dear, dear friend - and I adore you. I am here at the end of a phone/skype whatever.

    What you have written above should be published. Just saying..

    xxx

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  6. Always love your posts, Charlotte. Keeping you in my thoughts,

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  7. Now this is the Charlotte we love and adore. I can see you have your Big girl Pants on!!! Love you and thinking of you. XO

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  8. You can refer people to this if they still seem confused (h/t to Captain Awkward, one of my fav advice blogs):

    http://touch.latimes.com/#section/-1/article/p2p-75241622/

    All the Jedi hugs. ALL OF THEM.

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