Sometimes it's better to prepare for the worst
I find all this talk of ‘positivity’ problematic. As someone with cancer, you’re told about the benefits of positivity so often, that I found myself wondering: ‘if I don’t beat this, will it be my fault? Will it be because I wasn’t positive enough?
On days when I wanted to cry and shout and hide away, I started to worry that I was doing more damage, and that I should just ‘snap out of it’.
But, I have since learnt that cancer will do whatever it wants no matter how positive or negative you are. From the moment you hear that word ‘cancer’ for the first time, your fate is put into the hands of experts and you lose control of so many aspects of your life including your own survival – and that’s what makes cancer so hard to come to terms with. I believe really passionately that we have to be so careful about the language we use when we talk about cancer and the power that patients have over 1. the fact they got cancer in the first place and 2. whether they ‘beat it’ or not. Because those things feel like a judgement, and when you have no control over what has and will happen, this just isn’t very fair.
Please don’t misunderstand me, there is definitely a place for positivity. Positivity will definitely help make the experience less horrible, and very importantly, it will make you easier to be around, and easier for your loved ones to support and care for. But it won’t cure you. If you don’t beat it, it won’t be because you weren’t positive enough.
I actually learnt, that for me, too much positivity would actually work against me.
When I met my surgeon for the first time and he realised how outside of the normal ‘risk factors’ I lay, the glee on his face was palpable.
He explained all the risks involved in my surgery, countering every statistic with: ‘but you’re young, thin and fit so the chances are even lower and you’ll spring back really quickly’.
And I rode on this wave of positivity, despite the niggles, because what other choice did I have? I mean he was the expert!
At my pre-op assessment I was met by the same levels of ‘you got this’ enthusiasm.
‘You’ll be up and about in no time. Home by Friday!’ They told me.
But I wasn’t. By Friday I still couldn’t get out of bed. And I felt like a complete failure. I felt like I’d let everybody down.
I learnt that I had been completely unprepared for how awful surgery would be, and the shock of it hit me far harder than if I’d been prepared for much worse. Instead of being ‘up and about in no time’, I would mumble ‘this is the worst day of my life’ on so many occasions I would lose count.
I learnt that ‘feeling a little nauseous’ would mean vomiting for three days.
I learnt that the ‘few days’ I was told it would take my bowel to wake up would turn into weeks.
I learnt that the first movement that ‘might be a bit loose’, would actually entail having to extract a turd the size, shape and consistency of a dinner plate. Definitely a ‘worst day of my life’ day.
And ultimately, I learnt that I would stop trusting professionals to prepare me effectively or truthfully for anything that I was going to experience.
And it was positivity that, on top of everything else, led me to feel like a horrible friend too.
I’d been so sure that I’d breeze through surgery I had happily made plans for friends to visit me in hospital – and I felt bad when I asked them not to come.
And then when I got home, I felt even worse when had to cancel, yet again, all those visits that I’d rescheduled. Because nobody warns you how scary it is to come home, where there are no experts or remote controlled beds, or nurses and hospital assistants to help you with all the embarrassing and painful things.
And I really worried that my dear friends would start to think I was just making excuses. All they wanted to do was support me and love me and I just couldn’t face anyone. I started ignoring phone calls, and deliberately left my phone on silent because I just didn’t have the energy for conversation. And I learnt that doing all this would make me feel like an awful human being.
If I’d been better prepared, I would have known not to make plans, and to say no. I would have known that I had to be truthful about what I did and didn’t want.
And I am still learning, that right now, I have to put myself first. Even though some of my dearest friends are going through really horrible things of their own, I have had to learn to trust that other friends will rise to the challenge and support them instead, because even though I want to be there, I have nothing left to give at the moment.
And I am learning now, more than ever, how cruel cancer is. How it forces you and those who love you to face things before you're ready to. It changes your path, and you have no say in that.
Cancer will make you question and mistrust everything: your doctors, the system, your own body and, infuriatingly, even the people who love you the most; because cancer is hard. And, irrationally I know, it’s even harder to imagine how anyone would choose to experience it when they have the opportunity not to, the opportunity to walk away.
So, to make people with cancer worry about whether or not they are maintaining the right level of positivity on top of all of this, just isn’t fair. Send them positivity, for sure. I am a big fan of positive thoughts and vibes, because I can absorb them, but not be responsible for them.
Tomorrow I start the first of 8, 21-day chemotherapy cycles. And I’m petrified. As I’ve already said: cancer makes you lose trust in so many things, not least your own body, so I don’t have any great trust that it will cope with this any better than it coped with surgery. This time though, I’m going to prepare for the worst, so I am not surprised or shocked, or disappointed.
But the positive I am going to take from my experiences thus far, is that despite how hard I found surgery, desite how many times I worried that I was letting people down because I wasn’t positive enough, I have also learnt that so far, no matter how many times I have mumbled ‘this is the worst day of my life’, I have survived. And even if I mumble ‘this is the worst day of my life’ a hundred more times, there will be moments and days in between that aren’t the worst of my life – and it is knowing this, that I hope will get me, and the person I love most, through the next stage at least.