What Can I Say?

One of the things that crops up in conversations amongst people with secondary breast cancer is the things that we absolutely hate hearing. I feel as though I need to make it very clear that I have never experienced anyone saying anything with malice or with the intention of being anything other than lovely and supportive. For me, it is difficult to explain the emotions behind hearing certain things from people and it also seems to very much depend on my mood.

Because I would hate to be anything other than thorough I thought I would ask for some opinions from the people on my Facebook support group! It’s also a conversation that I had with some of the fabulous ladies I met on my Breast Cancer Now weekend

Being called “brave” is something that I struggle with. To me, being brave suggests that there is some sort of choice involved but you don’t really have any option other than to dust yourself off and crack on. A few people are rankled by being referred to as strong but personally I quite like this. I don’t feel strong, I honestly feel sometimes as though I’m hanging on to my sanity by a thread, so strength is a quality that I strive for.

There are quite a few insensitive comments that people have mentioned but for me I think I have only had one insensitive comment from someone I care about. When I told a certain friend that my cancer had spread and that the treatment plan had changed, she replied with “Oh, that must be a relief in a way that you don’t have to go through chemo and surgery!” A relief? No actually, it’s not a sodding relief, it’s the absolute opposite of a relief - what is the opposite of a relief? A leif? Unlief? Disbelief! According to trusty Google, some antonyms of relief are worry, panic and fear, so no, I wasn’t relieved, I was discom-bloody-bobulated (I feel as though I should get some recognition for managing to use the word “discombobulated”!)

I don’t think I am alone in needing to hear comments that validate my feelings. I don’t need to be cheered up or have my positivity boosted by many people - my Oncologist is allowed to be as upbeat and positive as he likes, in fact the more upbeat the better. Mr B gets it right every time: he just knows if I need some encouraging words or whether I would prefer a hug and a few choice swear words. My parents get it right too and I’ll never forget my Mum saying to me as we walked out of the hospital, after getting the final diagnosis, “it IS shit”. Because it is. There isn’t any getting around that. There is no positive spin (although the boys would probably argue that queue jumpers at Disney Land and Alton Towers are pretty good silver linings) and you can’t say most of the crass things that are said when you have a primary breast cancer diagnosis like “well at least they caught it early” (insert irritated emoji face here) but I digress. I need to hear that it’s shit, I need that acknowledgment and I feel incredibly lucky to have some really good friends that just seem to understand that.

Here is a quickfire list of words and phrases that nobody (ok, there’s always one) with secondary breast cancer wants to hear. In no particular order:

• Breast cancer warrior

• Battle (Urgh, I hate this almost as much as hearing that such and such has “lost their battle” which suggests weakness and failure)

• Journey (I find this word cringey when it comes to weight loss or spirituality but a cancer diagnosis is not a journey, it’s a shit show.)

• You’ll beat this

• When will treatment finish? (I was asked this by a doctor who should have known better)

  And finally, saving the absolute worst until last

• “None of us know when we’re going to die” or “ any one of us could get hit by a bus tomorrow”. If you’re looking for a way to completely invalidate the fear that accompanies a crappy life limiting diagnosis then choose one of these. Just no. I understand that these comments are often made with the best of intentions and they may be true but no. No, no, no. Take your bus and don’t ever mention it to me again. I don’t know one person who has been knocked down and killed by a bus (or any motorised vehicle) so the comparison stinks.

I am fully aware that this post probably makes me sound like a grumpy, miserable pessimistic arse. I promise that I am not and actually, I am extremely positive and living my life with a smile on my face and a bucket load of hope. Whilst writing this, I have also realised that it must be impossible to know what to say a lot of the time but I am surrounded by amazing family and friends who mostly seem to know when I need them to hug me or swear at me and for that I am truly grateful.