Tuesday, 7 October 2014

What do you say?

What do you say to someone diagnosed with cancer?

I've hesitated about writing this blog. Of course, everyone reacts and deals with their diagnosis differently so there can be no rights and wrongs – after all, one man's compliment is another woman's smack in the teeth.

But in my own experience, and in listening to other people who have cancer, there are some common statements issued in good faith by caring souls who believe them to be soothing and consoling, which prove to be the opposite. And as it's frequently said that people don't know what to say when they find out their friend, relative or colleague has cancer, I thought I'd pick out a few classic comments where I suggest you proceed with caution.

Please don’t have nightmares. Much more than the clangers, we talk about the wonderful love and support which gets us through the tricky times. And I can honestly say that nobody has said anything that's made me cross or any more upset than I currently was – apart from the person who insisted on telling me a statistic about prognosis she'd read, but even that was said in good faith.

Compassion, whatever the wording, should never be criticised.

Besides, I'm sure I'm guilty of some of these myself…

We could all be run over by a bus.
Yes, we could, and I appreciate the sentiment. But crossing the road is a risk we take; having cancer is somewhat forced upon us and when we have it, the reality of a premature end is so much more blatant than the potential to find ourselves under the wheels of a bus. I would also say that if we were particularly worried about being run over by a bus, we could take precautions to prevent this unfortunate incident such as never crossing a road. I, and everyone I know who's been touched by cancer, would like to be told the one thing we must do to prevent cancer coming back. And we'd all do it. Unlike not crossing a road, this hasn't been discovered yet.

My friend's brother's sister's cousin had breast cancer twice and is fine.
I understand this one entirely. We all love a success story. Surely when someone has cancer, they also want to hear success stories, right?

Sort of.

But it's a certain kind of success story. Having cancer is about having your mortality thrust in front of your face; however aware you were of it before, it's just so much more immediate now. On diagnosis, I'd suggest there are two questions that people need answered – hopefully in the affirmative: Can I be cured? and, Can I stop it coming back? With cancer, one of the hardest things to believe is that if you're lucky enough to survive the first time, that your body won't get it wrong the next time. When those rogue cancer cells called, your body was found wanting. What logic says your defences will perform better next time? Much logic, actually. There's plenty of research and a wealth of stats to show that your body won't get caught out again and drugs such as Tamoxifen and Herceptin also help your body change its attitude. But whatever the scientists tell us, it takes time to trust your body again after cancer. If you have breast cancer and have had one breast removed, it's really hard to rationalise that you're not going to get cancer in the other one. And next time it might be harder to detect. It might have spread further. It might be more difficult to cure. And even if all the answers were positive, who would relish the idea of another round of treatments?

So, I suggest proceeding with caution in the choice of success stories. Those where people have survived multiple incidences of cancer are another resounding endorsement that recurrence happens. And that isn't something that somebody who's currently dealing with their first bout, wants to think about.


I've just read an article that if you snort three pieces of seaweed (freshly picked that morning from anywhere along the beach between Seahouses and Alnwick on the north coast) on the hour, every hour, they said it could reduce the risk of cancer.
I'm all for well-researched information which has scientific backing. Trust me, I'm as keen as anyone to discover a food source which will give me that piece of mind. But one person's chance hearing can be another person's 24 hours of research and if you magnify that up by all the good folk who've heard a rumour, all of a sudden you're wading through a confusion of unsubstantiated research where much better for your health might have been to relax and read a book. The most helpful suggestions are from those who hear something, carry out the research and only pass on the findings when they've done the work for you. Some people have done this for me and I really appreciate it.

We’re all going to die anyway.
Yes, we are. However, most of us hope that if we do our best to treat our body with respect, we'll live beyond retirement. It isn't something I take for granted but it is a hope. So yes, we will all die one day but when you've just been diagnosed with cancer at 45, your biggest fear is that the day could be forty years earlier than it might have been.

What's the prognosis?
No. Just no. Nobody has asked me this but I was staggered to hear that it was quite a common question and generally from relative strangers. Eeek! I don't think you need me to point out that if somebody hasn't discussed their prognosis, they probably don't want to talk about it. It isn't something you'd forget to mention.

Re chemo aches and groans: at least it means it's working.
It doesn't mean it's working; it doesn't mean anything significant and the inaccuracy of this upsets some people.

Re pending chemo: does it make it easier now you know what to expect?
I think this might be acute paranoia on my part but it feels like the awfulness of chemo is belittled with this question. It's as if, had you'd been stronger or braver rather than fearful for previous doses, the experience wouldn't have been as bad. In truth, knowing what's coming is more likely to make it worse.

You look great.
- when you don't and /or you feel terrible. This offends some people but not me, you can tell me as many times as you like ;)

22 comments:

  1. Well what a brave and very helpful post, Jackie. I'm sure you'll achieve your aim of explaining how you see the most helpful approach we can take. I'll certainly keep the thoughts myself - and I've never asked about prognosis. Tyankscand all the very best to you.

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    1. Thanks for reading, Jacqueline :) But please don't keep your thoughts to yourself - you can't offend by being nice and caring, I don't think. It's just that some comments are more helpful than others (but we're all different so therein lies the problem) and so many people have said to me that they worry if they're saying the right thing sometimes and as I've also heard some comments which haven't been helpful to others, I thought it might be worth writing it down. The only times I've had to have drifting out of the conversation moments (and was never cross or hurt) were when I had a few weeks where it felt everyone wanted to tell me about people who'd recovered from cancer multiple times. As I said in the blog, it took me to a place I didn't want to go - but I do understand that some people might find it uplifting.

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    2. Actually I meant I'll keep your thoughts in my mind. A pal is poorly and we chat happily, taking any conversations in any way she wants and including plenty of laughs.

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    3. I'm sure you're exactly what she needs then! We probably all worry a bit much about what we say in difficult circumstances, whereas people tend to remember the sentiment more than the actual words anyway, I think. Well, I hope that's the case!

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  2. Very informative & helpful... will definitely keep these in mind, and put my brain into gear in future... thanks and good luck to you x

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    1. I'm sure you already do! Thanks for reading and I'm glad it was useful :)

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  3. Blame it on predictive texting, I always do!

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  4. There appear to be my ongoing blog's commenting problems again. The fact that some people can comment and others can't, makes it more difficult to sort. If you've taken the time to write a comment (thank you!) please feel free to paste it into an email and I'll post it for you. My add is: jackie[dot]buxton35[at]gmail[dot]com. Many thanks!

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  5. Great post, Jackie.

    I know some people find it hard to know what to say, but for me, the most hurtful I think, were the people who knew I had thyroid cancer but never mentioned it and avoided asking how I was. I know it was because they were embarrassed or scared rather than they didn't care, but it still hurt.

    I also got fed up with people saying 'you'll be fine.' without knowing anything about this (rare) cancer. I am 'cured' but I am not really fine - the after effects are exhausting!

    Having said that I hope you are feeling well - and yes the 'you're looking well' can be a blessing or a curse when people then expect you to carry on as before!

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  6. Thanks Lindsay:) I can imagine it is tough when people don't acknowledge something that is so all encompassing to you. I only had one person cross the street and I did understand but it did make me paranoid for a while! I think it's perhaps hard if you haven't had cancer or contact with it to know that life does still tick along and some normality is very welcome in amongst all the treatments. I think you can't go far wrong if you just treat people how you'd have always treated them - but also acknowledging that you feel for them at this time. I have to say, in my friendship groups there are so many people navigating difficulties with illness, parents' illness, divorce etc. that I was always really touched (and feeling a little guilty) when they still found time for me. I must put that in my next post about all the good things that people have done and said :)
    I'm sorry the repercussions from cancer are still ongoing for you- but you seem to cope with it well!

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  7. Thank you for this blog. Although what works for you might not, as you say, work for everyone it is good to hear your comments and particularly the reasons why statements definitely intended to be positive can actually have the opposite effect. It can be a minefield for many of us I think and anything to give us confidence and be better able to support you and others in a similar situation has got to be a good thing. Keep up the good work!

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  8. I've been thinking about this a lot since I wrote the blog and have had lots of comments on Facebook. I can't help thinking that if the person with whom we're speaking is doing a good impression of poker face, then perhaps just saying, 'Are you ok with this?' before continuing, should make sure we're on track?? I do ask, I just hope people feel able to tell me if it's not working for them. Phew, us humans are complicated beasts aren't we? Thanks for reading!

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  9. This is an important post, thank you. I haven't had many dealings with cancer - unfortunately, my family seem prone to heart attacks and strokes.

    I can't understand why anyone would ask about the prognosis - surely that's something private and for only your closest friends and family.

    I hope you're doing well, Jackie :-)

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    1. Hi Annalisa, thanks for reading :) I'm sorry to hear about the tendency for heart attack and stroke - they're also terrifying, aren't they? I just keep hoping modern medicine and treatment will continue getting better and better.
      I'm doing really well, thank you and yes, I was shocked to hear that people asked about prognosis but it's interesting that not everybody who has cancer minds being asked. That's why it's such a minefield, I guess!

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  10. It’s the awful silence that does it. Initially there are no words and then there’s a storm of things in your head but you’re still not saying anything and – particularly if this is terrible news the sufferer has just told you – you feel like you should be offering something, doing something, but what? What?
    And so of course we misunderstand the contract, albeit in a well-intentioned way. It’s an admission in so many ways, an acknowledgement that this is the situation. It’s difficult. Time to think in that moment is so useful, time to remember that this is a person, maybe that you know –possibly very well – and not a symptom or a treatment or a diagnosis. I’m sorry to hear that, seems so small in comparison, but I think it’s a good start and it gives you the chance to find out whether the person wants to talk about it, or about anything and everything but, and whether there’s anything you can do to help, or whether you’re already doing it by just being there and talking.

    I hope you're well & have what you need.

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    1. Hi Van, I think you put that beautifully. Nobody is trained to know what to do in this type of situation and if they were, it would almost certainly go wrong because what's right for one is not right for the other. But you're right, the only thing you can really do is be there and I can honestly say that I feel blessed that so many people have been there for me. That's what I remember, not the minutiae of what people say.

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  11. I came here via Twitter - and all I can say is "We need more people like you saying that sort of thing." Thanks.

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    1. Thank you! I'm so happy to hear you say that. As I said over at Twitter, it was a difficult post to write. Next up is a list of all the great things people have said and done - that's much more in my comfort zone :)

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  12. Many apologies to Nadine who has had trouble commenting on the blog. As you may know, this is an ongoing problem driving me slowly insane(r). Anyway, thank you to Nadine who sent me her comment via email and asked that I post it here.
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    I just wanted to add my own bug bear to the list. 'Oh so and so will be fine, they've got such a positive attitude they'll beat it'....aarrgggghhhh!!!! if all it took to cure or survive cancer was a positive attitude, then the world would be such a nicer place and my Mum would still be here. People always mean well and I know its never meant maliciously, but seriously, do think, because its mildly insulting to those who have a less positive prognosis/families of those who sadly don't survive that somehow if they had just been a little bit more positive then it would all have been ok. Sorry rant over!!! Nadine

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    1. I found Nadine's comment really sobering. I hadn't really thought of it before but it's oh, so true. How wonderful the world would be if a good dose of positivity was a cure-all but alas, it isn't. I think the trouble is we just want everyone to be alright and so we say these things almost because we want them to be true.

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