Story Number 100 by Jen Taylor

An extract from the 100 Stories Book. Story number 100, written by Jen Taylor.

Find more of Jen’s work on her blog thecancerchronicles.blog

 

Cancer has affected me in many terrible, but also some positive, ways. I am very cautious of highlighting the positives too much, as I think ‘non cancer’ people tend to want to know about all the ‘post traumatic growth’, rather than hearing about the very real ‘post-traumatic stress’ that accompanies cancer diagnosis and treatment. Often when I say some aspect of the cancer experience was horrific, it’s been met with, ‘Yeah, but aren’t you mostly grateful for it?’ To which I just want to shake them, so they understand how horrible the whole thing is. I was not diagnosed purely to make non-cancer people feel good about life.

It has made me ill, it has taken my teeth and some of my face, it has impaired my ability to sing, to use my hands, it’s taken my identity and left me with anxiety, sleep issues, pain and weakness. It’s made me unable to function in the life I had before.

People are desperate for us to say we’re ‘all better’ after treatment, whereas that is so far from reality and, in many cases, it’s the bit after treatment that is the hardest part, as we struggle to navigate the post-apocalyptic wasteland that is the life we’ve been left with and the many permanent side effects that plague us.

People talk about a ‘new normal’ that you have to adjust to after cancer, and I always hated this term. I won’t let cancer change me or take anything from me, if I want to change, I will be the only one to do that. So, in my fiercely determined way, I have tried to take ownership over it. I am now more in tune with my body, my needs, and what I am capable of. While I used to regularly push myself to the extreme, I am now learning to be kinder on myself. Some days I get exasperated by my inability to work a full week and then go out all weekend, sometimes I get frustrated with having to plan rest days and just do nothing. But mostly I just make sure to plan my weeks around what I know (or am learning) I’m capable of, and I am getting better at just saying ‘no’ to things I can’t, or don’t particularly want to do. Less ‘should’, more ‘need’ or ‘want’.

I have made a lot of wonderful new friends and connections on the cancer circuit and am grateful for the wonderful people who have helped to carry me through my dark days, as well as the opportunities that have come out of it. The day I was diagnosed, I was welcomed into a large, supportive community of people, connected by our shared experiences. Of course this means that I now have a large group of friends who are more likely to die than your general peers, but I made a decision early on that it was worth the heartbreak of losing friends, in order to have had them in my life in the first place. My life is richer for knowing a lot of the people who are no longer here.

I have also gained an insight into and understanding of suffering. While this isn’t something I would wish on anyone, it means I am a lot more compassionate and can connect with a large variety of people in their struggles. I hope I can continue to use this to help other people.

For so long the ‘cancer conversation’ (if you could even call it a conversation) has been mostly held by people who don’t have cancer. Often by the tabloids that describe cancer as a battle, painting people who die as losers or failures, propagating the idea that those with cancer are victims who need to be pitied. Sure, we’d like some empathy and recognition that it is shit, as opposed to being dismissed with a misguided command to just ‘be positive’, but cancer isn’t as clear cut as it used to be. We have an inherent shame around illness in our culture, that anyone who isn’t perfectly well is weak (this of course leads to statistics like suicide being the biggest killer in men aged 20 to 45). This type of shame is exponentially greater when looking at Black, Asian and minority ethnic (BAME) communities, where religion is heavily involved within their culture, and cancer is either ‘God’s plan’, or a result of someone not having prayed hard enough. But that is not my personal story to tell, and there are some brilliant people doing good work in that space.

In the days of old, people would hide away their cancer diagnosis, keep it a secret in order to avoid judgement from people who looked down on them. Even now we still seem obsessed in victim blaming – ‘Oh you have cancer… so you smoked? Ate too many burnt pieces of toast, roast potatoes or red meat? Drank too much alcohol? Didn’t exercise enough? No? Oh, so it must have been sugar?’ So I get why it might be easier to not let people know if possible – avoid the pity, the blame and the head tilts. We are also the age of social media – of curated grids, of Instagram filters, of ‘living our best lives’. When your reality doesn’t match up to those you are seeing everywhere online, it can add more pressure to hide away until you’re able to be back on a beach with a cocktail and flowing locks of hair (if you’re lucky). But we are also slowly shifting into a world of #authenticity, where showing vulnerability is becoming more cherished, which creates a space for us with cancer to exist in the world. Hopefully not only as ‘inspiration porn’ (think ‘look at the brave cancer warrior always being so inspirational, at least we don’t have cancer, look what they’ve overcome’), but as a way to show other people who are struggling that they are not the only ones, and though it is shitty, it is also okay that you’re not doing so well right now.

Millennials are famous for feeling like they are failing at so many aspects of life – not skinny enough, not successful enough, not rich enough. Hell, we’ve even coined the term ‘adulting’ and decided that we’re not good at that either. If we keep going in that direction, we’ll end up adding ‘human-ing’ as something we are failing at. But not if we start talking about these things, opening the conversation, realising that everyone is struggling and that is perfectly normal. With the rise of the #metoo movement we’ve seen how connecting, powerful and validating it can be to know that you’re not the only one dealing with something. People are starting to speak out and it’s time for us to do the same. And with 1 in 2 people born after 1965 destined to get cancer, we need this conversation more than ever.

It needs to come from within – those with cancer showing the way, and those without (for now, at least) listening and following suit. With 50% of people getting cancer in their lifetime, speaking about it needs to be normalised. That’s about the same amount of people in the world who are born male/female, and yet we still see it being talked about in whispers and with clichés instead of facts. In the past, people would either ‘get better’ or ‘die’. But as constant improvements are being made in the world of medicine, people are now living with cancer for many years. This negates the use of words like ‘survivor’, which is about as outdated as words like ‘fight’ and ‘battle’. No one loses a battle or gets lost somewhere when they die. Cancer isn’t a ‘journey’, it’s just a shit part of life.

While I am fully aware that some people with cancer like to use these words, they are not helpful on the whole. I understand that seeing their illness as a fight gives people some sort of power over the situation, allows them to take back some of the control they feel they lost over their lives when they were handed their diagnosis. But it also puts so much pressure on people to be cured, and makes a secondary diagnosis, or any moments when things don’t go according to plan, personal failures. And as long as we keep using this language, we keep propagating the myth that people can cure their own cancer by some particular level of ‘fighting’, and that they bring any setbacks on themselves. And, as we see when people want to know what we did to cause our cancer, the cycle keeps spiralling in the wrong direction. Even by constantly describing people as ‘brave’ for having cancer is damaging. Brave means ‘showing no fear of dangerous or difficult things’. We need to retire this word and stop telling people with cancer they can never let on that they’re scared or struggling.

Language is the most important thing we have at our disposal, let’s stop using it to tell people how they should be acting and feeling and heaping shame on people for things that are entirely out of their control. I would like to strongly say that it is everyone’s prerogative to do cancer in any way they want to, there should be no pressure to say certain things, or look a certain way, or even to show ‘vulnerabilities’ if they don’t want to. But we need to work a lot harder as a society at taking the pressure off people who don’t want to hide away in shame and be blamed for their own demise, in the hope that other people will then feel less pressure to stay quiet and hide.

The vast majority of my friends and community through cancer have come from social media. I wasn’t big on social media before I was handed my cancer card, but as I started blogging from the day it was issued to me, people requested I set up social media accounts for it, so they would know when I had posted. Through this I have met so many wonderful people – the #cancertwitter (and Instagram) family are like none other. While I wish no one had to be part of it, since we all find ourselves in this situation, I am glad we have each other. We’ve taken to calling it ‘the coolest club that you don’t want to be a part of’.

Cancer can be so isolating (as can any chronic illness – partially due to the fact that for so long we haven’t spoken about it). I have come across people in my travels who are not on social media and it shocks me every time to hear them say that even through
their diagnosis and treatment, they hadn’t met anyone else with the same cancer as them, or a similar age to them – ‘The only person in the cancer ward for under 50’s’ is a line often heard. I have a super rare cancer, and even I have found people with the same diagnosis.

There is something freeing about shared experiences and just knowing that someone else knows what you are going through, at least to some extent. I find I’ve been able to come to terms with the whole thing a lot better than those who have only be surrounded by ‘healthy’ people. I’ve gone to events with cancer people, and for some of them, it’s the first time they’ve been around other people with cancer, and that has been instrumental in helping them start to process their own experience.

At the beginning I joked about the idea of having ‘cancer friends’, I think a lot of us cringed at that thought – that we would be hanging out with people who had cancer, even perhaps after we no longer have it anymore. And of course, a lot of people I’ve come across I wouldn’t hang out with – while we all have one thing in common, the idea that we would get along with everyone is unrealistic. But you certainly find some gems. And sometimes putting out a tweet about something that’s bothering you and getting a ‘me too’ from people is all you need to get a bit of peace of mind that you’re not going mad, losing the plot, or that there’s not something very wrong with you. Part of the human condition is in fact thinking that there’s something personally ‘wrong’ with us, so without having these conversations, those thoughts would threaten to push us further into isolation.

The internet is also giving a platform to those of us with cancer to be able to share our experiences, and I think this is starting to flow over into the media. I feel like we are at the start of a revolution. At least I hope we are, and I will do everything in my power to be a catalyst for the change we need to see.

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