Every so often I love Twitter; the art of trying to capture something smart and snappy in 140 characters. It’s not for everyone and not all tweets hit the sweet spot but many do. I love the conversational nature of it; the fact that you can make a statement or ask a question and in a nano second be on the receiving end of responses from around the globe, around the political spectrum and around the uniqueness of a friendship group, many whom you’ve not yet and never will meet.
I’ve mentioned before that connecting with people who are experiencing something similar to you can be hugely comforting and informative. Just look at people who wear Crocs.
Joining #ClubCancer was never on my wish list however it has connected me with a wide range of team members from all over the world who just get it. This week was no exception when Annie from @barbieslosingit said….
Things not to say to someone going through hell:
Not to worry.
Could be worse.
You’re one of the lucky ones.
Yours is one of the good cancers.
The fabulous Julia at @bccww added….
or ‘it’s been a while don’t u think you should (move on/stop talking about it) now’
I couldn’t resist responding…
Yes! Even when that message is simply conveyed with a slight eyebrow raise
We continued in this vein, adding to the list:
Me: ‘When this is all over we’ll……… *insert some “exciting” event #neverover
Annie impressively responded:
I deliver the recurrence/mets rate speech and add: “But I welcome parties and gifts for my continuing badassery.” 🙂
(That’s what I’m talking about when I say some people use their 140 characters so so so well)
I thought that this statement was worth sharing and I’m still shocked when I think of it now, a few weeks after the event:
Someone said to me recently “Oh I heard about your little problem” #empathyvoid
Charley from @CharleyMorgan2 was straight onto this
And so it continued. Yes, we know you may not know what to say. Yes, we know you’d often rather say nothing. Yes, we know we were in your shoes too at some point in the past and now we’re the bloody know-alls smirking, cringing and generally gobsmacked at what some of you say to us, but for goodness sake, think!
So here’s 10 further statements to avoid. You’re welcome.
1) ‘We can fight this together’
We don’t want a fight. We don’t want to encourage you to fight. How can we ‘fight’ what we might not yet really know? And quite frankly if we hear someone else say ‘They bravely fought their battle with cancer’, we might be irked enough to actually fight. You. Please say something genuine and personal to us, not a journalistic headline.
2) ‘Just give me a shout if you need anything at all’
We’re not going to shout. For the most part those truly nearest to us are going to have the biggest role in our care, emotional and physical well-being. It’s quite typical for patients to retreat into themselves and feel that home is a safe space. When your world has been turned upside down, you respond in ways that might not initially make sense or are typical for you. Some of that includes the way in which you access help. For all of us there is a period of time where we- AND as importantly, those around us, need a great deal of help. We can feel that we become overdrawn in the Bank of Help and do not foresee ourselves being able to pay you back anytime soon. So we don’t shout. Likewise, we might truly love you to come over and do a disappearing act on that huge pile of ironing that we have or to cook us a meal but that feels too cheeky to ask. So we don’t shout. But, we’d love you just to come and do something unasked, unprompted and spontaneously (mostly!).
3) ‘My great aunt twice removed cousin Mabel had cancer 18 years ago and she’s still going strong.’
We’re delighted for Mabel, we really are. However about *83% of friends, family members and acquaintances start off their first conversation with you like this. Can you imagine? After a while this becomes really background white noise. We do understand that you’re keen to present us with a positive story to encourage us to believe that what Aunt Mabel achieved is possible for us too, but at that point when we’ve heard about Aunt Mabel, Cousin Jim, your sister’s pen pal and the Queen’s favourite corgi breeder’s survivorship achievements we’re done. We may only be able to process what’s happening in the here and now. Also, strange as it may seem the more positive stories we hear, we can at times feel that the odds are against us. But we are delighted for Mabel. And for you.
4) ‘You’re braver than me’
No shit Sherlock. I had a choice?
5) ‘Have you tried eating raw cake batter whilst hanging upside down on a trapeze? I just Googled it and lots of cancer patients swear by it.’
Swear by it do they? Bollocks. We know that all of the major pharmaceutical companies are involved in developing cancer drugs; it’s in their commercial interests to and whilst that potentially makes great business sense, it does also reduce someone’s personal circumstance to a numbers game and gamble. Much is written (most of it nonsense) about drugs companies not really wanting to find a cure because then one of the most common and feared diseases would lose its revered title. It’s messy, it’s unpleasant to think about and it’s the way of the world. Cancer is big business. However, that does not mean that all of us in the #CancerClub are seeking an alternative to our current medication regime. Most of us are going to be on medication for a substantial amount of time, if not for life and many of us are alive today because of it. That also doesn’t mean that we love what it’s doing to us right now and for our futures, but we understand that today, right here and now, this is how it is.
We know about alternatives and most of us have incorporated some type of alternative therapy or additional supplements to our routines, but what we truly don’t need is pointless and quite frankly insulting and often dangerous alternatives. You can keep your baking soda smoothie. And as for Google searches…………….don’t get me started.
6) ‘You look really well’
Interestingly this is often said in a type of accusatory tone which internally (and sometimes externally) prompts a ‘Well what did you expect?’ type response. How do you want us to look? If we looked worse, would that help you empathise genuinely? We might have lots of days where we feel crappy but we’re human and if we have the energy we’d, like you, rather present the world with clean hair (if we have any) and matching socks, just like you. We’re human still.
And on that theme….
7) ‘Don’t worry, your hair will grow back, it’s only hair.’
No comment, other than to say that although I’m grateful that I didn’t have any treatment that affected my hair I know many who did and this comment sucks. Do. Not. Say. It. Ever.
8) ‘Gosh there’s me going on about my problems and they are nothing compared to yours’
Life is not a competition. We’re still interested in your latest spat with the neighbours over car parking spaces and we still want to make judgements with you through our ongoing discussions regarding things like ‘people who follow any current trend and really shouldn’t’. Please don’t take away some of life’s little pleasures and only focus on cancer. We all need a break; if we want the conversation to come back round to us, we can work on that! Sometimes, in fact lots of times, we’re sick of cancer too as well as being sick with cancer, there’s a difference.
[Inserts smirky face]
And if you say ‘I nearly died….’ and then cringe because you think you’ve said the wrong thing, don’t. We can laugh at your human vulnerability too.
9) ‘All promises, sympathy and then………….. nothing’
I have all the messages on my phone from last year and there can be times when rereading them is comforting. Lots of love being freely shared, jokes, promises made, kept and exceeded but also dead ends. Dead ends in terms of responses to the initial news then nothing. Nada. Thanks and goodnight. I and my cancer buddies would love to say that we don’t need you in our lives now but that doesn’t mean that it doesn’t hurt. Perhaps we go on about this alot but in sickness and in health and all that…………
10) ‘Well done, you’re all finished now’
Ummm no, it’s never over. I might have currently completed my ‘active treatment’ but that does not mean that my regime is now inactive. Far from it. It goes on and will always be a part of my life, my considerations, opportunities and limitations. We never stop worrying about recurrence, the lack of support, awareness and treatment for secondary/metastatic cancers, treatments to keep cancer away and the physical and psychological impact on us and our nearest and dearest.
So what should you say?
You think I’m going to give you a BOGOF blog entry? That’s for next time folks.
*Made up statistic 2016