Words!

Quite early on in this ‘journey’ (my least favourite word), I was constantly being told to ‘stay positive’ (really?), ‘you’ve got this’ (what, fucking cancer? Yes I have) and keep ‘fighting’ (I didn’t choose to go to war) – I was a ‘warrior’ (I certainly wasn’t Boudicca). Apparently, I was ‘strong’ (nope) and was an ‘inspiration’ (fuck me, now we’re getting silly). This is just a few of the words and phrases that were thrown at me shortly after sharing my diagnosis. Personally, I looked at it all rather differently and saw it as a ‘shitshow’ and that I needed to work through my treatment plan towards an end goal of getting the cancer gone with the least amount of chance of recurrence as I possibly could. This is how I saw it (and continue to see it) and is the post I put on Facebook for my friends and family to see:

“JOURNEY - I'm not on any kind of journey. I'm not going anywhere nice. I'm following a treatment plan through a process.

FIGHT/BATTLE - nah! I've got no choice. I'm doing as I'm told. You generally choose to go into battle and fight.

STRONG - nope. I'm not strong, I'm doing as I'm told.

BE or STAY POSITIVE - can't do that I'm afraid. That's tiring and practically impossible. What I can be though is hopeful. Hopeful that the treatment will work, hopeful that chemo won't make me too ill etc.

IT'LL BE ALRIGHT - will it? How do you know?

YOU'VE GOT THIS - yes, I've got cancer. Oh, is that not what you mean? No, I haven't "got this". I don't have enough control to "have got this".

These words GET ON MY NERVES and those thoughts immediately pop into my head. It's highly likely there are more that are yet to trigger me. That's most definitely not the same for everyone. Everyone is different. You could probably give a counter argument FOR using them but please don't, not to me.

What I think I'm trying to say is, I'm sorry if I snap at you or bite at you but it's likely that one of those words (or similar) has been used (always with the best meaning or intention, I know) and it's got on my nerves. If I correct you or end up snapping at you, I'm not likely to apologise (I'm sorry, I know that's not like me, lol).

Please don't get offended, I'm happy to explain why if you ask me. I am also incredibly grateful for all the support and well wishes so please don't shy away from speaking to me.

Everyone is different and words mean a lot to me. I hadn't realised quite how much until I'm kept awake at night (like tonight).”

The same morning I shared this to Facebook, I had a counselling session. I shared what I had written with my counsellor and we talked about it at length. In some respects, she felt the same as me and talked about words she had used many years ago – words that had upset someone and made her think about becoming a counsellor. She went on to use the word ‘hopeful’ which I quite liked. It kind of gave an air of positivity but also seemed to err on the side of caution as I was in an ‘unknown world’.

I don’t know why these words annoy me so much – I see people who are going through similar to me thriving on these words. I’ve seen them say that they are a ‘breast cancer warrior’ and that they have ‘pink sisters’. Even the NHS make use of the word ‘journey’ – I’ve corrected many people including those who I have spoken to from Macmillan. I literally hate this word – please do remember that everyone is different and this is just my view but I can’t be the only one.

I don’t feel that cancer is a journey. Yes, you are going from one place to another but I always think that you go on a journey to get to somewhere nice. Going through cancer is certainly not nice. It’s a process – you get diagnosed, you get told what is going to happen with regards to treatment and then it starts. You have absolutely no control over your life from the point you are told you have cancer. Everything you do revolves around hospital appointments and treatment. Absolutely everything in your life is affected.

It is also hard to stay positive. I know people who say this to you are only trying to help and don’t want you to get onto that slippery slope of depression but unfortunately, cancer never left my thoughts. I believe I think about it at least 5 or 6 times an hour, every waking hour, of every day since my diagnosis on Friday 3rd March 2023 (that date will NEVER leave me). I couldn’t stay positive – I had triple negative breast cancer. As far as I knew, this was one of the most aggressive forms of breast cancer there is and has less treatment options; I was terrified (and still am) so could not remain positive. I knew people who’d had the same and got to the other side – I also knew a person who’d had the same and was dying. Guess what was always in my thoughts?

The terms ‘fighting cancer’ and ‘battling cancer’ are widely used but I really don’t see this. You choose to go into battle to fight. I didn’t choose to do this. I literally didn’t have any choice. I was not able to make any decisions at any point about my treatment plan apart from giving my consent – it would be silly not to give consent at any point. Put simply, I felt as though I was having to do as I was told every step of the way. You are told what the steps will be and get given the dates and times for those steps. You turn up for those dates and times and let other people tell you things or do things to you. There were times when I did ‘fight’ and ‘battle’ things out – trying to get the G-CSF injections so that I could finish the first cycle of the paclitaxel/ carboplatin regimen was one such example; and that was a ‘fight’ I felt should never have happened once I’d raised awareness of what I believed was going to happen. I wasn’t just ‘licking a finger and seeing which way the wind blew’; it was clearly evidenced in my bloods. I was very anal and kept a spreadsheet of this information.

This is followed by “warrior”. If I feel that I am not having a ‘fight’ or ‘battling’ anything, I am not a warrior! That is all! I am doing as I’m told! I AM NOT FUCKING BOUDICCA!

“Stay strong” is another phrase that a lot of people use particularly when there is a set-back such as a chemo delay. It’s exceptionally hard to ‘stay strong’ all the time. As I said earlier, I believe I thought about the fact that I had cancer five or six times every hour of every day and at times, I had overwhelming feelings of sadness and despair. I learnt to manage these but they would come two or three times a day. Again, everyone is different and there will be many people who don’t have these thoughts and many who have more. It felt as though I was being told to brush it all under the carpet and forget about the negative thoughts and feelings that I was having but actually, I needed to acknowledge these in order to work through them and continue with life. If I tried to always stay strong, I believe I would have had a nervous breakdown. As it was, I had diazepam for the first couple of weeks after diagnosis and then propranolol shortly after chemo started. I continue to take the propranolol as the anxiety is still there.

The corporate, inspirational phrase of “you’ve got this” really wound me up. I heard it so many times, again from people who had only the best intentions at heart. However, all I could think of was “you’ve got this – what, you mean I’ve got cancer, yes, I know”. That is one phrase that I do not want to give any time to trying to explain what it means to me.

“It’ll be alright” is a phrase that was only used once or twice and that very quickly had me quipping “How do you know that?” My goodness! I had cancer. Cancer kills! How on earth do you know that “it’ll be alright”? You don’t so shut the fuck up! I can’t give this any further explanation either – I think it really speaks for itself and I really can’t believe that anybody would say it – but they did!

“You’re an inspiration”. Oh, behave! That’s all I could think of responding with when anyone said this to me. I wasn’t doing anything inspirational. I was simply doing as I was told. I had no control over anything as I’ve said earlier and needed to attend many appointments when they were booked for me. It was luck that I didn’t feel ill. There were some things that I did do on purpose to help myself but they certainly weren’t inspirational.

All of this terminology got on my nerves and it began to irritate me so much that I was beginning to bite when people used them – to be honest, I still do and will continue to correct people. I would also like to apologise for the overuse of exclamation marks but that is genuinely how I felt – I always thought I was having to put an exclamation mark at the end of what I was saying. I generally don’t try to explain why I didn’t like these words because then I’d sometimes have them try to correct me. At that point, I just wanted to tell them to “fuck off”. However, if you understand where I am coming from, be mindful that there are people with cancer who absolutely love these words and phrases.

I think the biggest thing to remember is that if you say something to a cancer victim? Cancer sufferer? Someone with cancer? Cancer warrior? (the list goes on and I don’t know which is the right phrase to use), they may well correct you. If you don’t like it, tough! You are not living their life. Don’t tell them how they should be thinking or behaving – that’s what it felt like to me and I can’t be the only person who felt that way. All I could think of when I heard many of these words and phrases was “I already have no control over my life. Don’t tell me how I should be thinking or behaving. That’s all I have left”.