I’m really scared. It’s not that easy to admit to, it seems absurd actually. I don’t mean to sound boastful but I can probably list the moments I was scared last year, there weren’t that many of them; telling dad and A, when the doctors thought I had a secondary tumour on my sternum, before my operation, and before each new treatment. I think I had a few “oh my god, life will never be the same again” worries but generally of the tsunami of emotions I had to make head space for, fear didn’t have a front row seat.
I guess that may be surprising but I had a purpose last year and a plan. When faced with a crisis, I find it easy to blur out the bigger picture and concentrate in the day-to-day; getting things done. So last year I got very practical, which is why I have a will, an end of life plan and detailed instructions for my funeral. I found it freeing to take control, organise the very worst case scenario. I don’t mean to toot my own horn but I think I dealt with last year’s crappy hand, as well as I could.
I keep thinking about trapped animals. How strangely calm they are as the net goes over or they spring the trap. It’s only a few seconds later they start to fight, to try to free themselves. Is it belated adrenaline? Is it a delayed reaction to unforeseen, incomprehensible danger? That fearful flapping, that’s where I am at the moment.
All my posts about life now, seem to be variations on a theme. I should group them all together under the banner headline “Trying to Get My Head Around Things”. It’s slow work.
After treatment ends you just want to remember what ‘normal’ felt like, so you work on that. You go to work and you can lose yourself in normal. If you are lucky over the weeks your body even starts to feel a bit more “you” again; you’re no longer reliant on pain killers to get you through, your hair starts growing back. You are happy and grateful and free from hospital appointments and needles. It’s a fine old time.
Then, if you are me, you get tired and a bit weepy. You think that actually perhaps you’d better rest, take stock, register the year that was. You ask experts, fellow cancer folks, friends and family; everyone thinks it’s an OK thing to do. So you stop but you feel weirdly guilty, like you’re slacking off.
You plan amazing things, fabulous trips and adventures. All the things you promised yourself you’d do when you were lying in bed last year and just watching the world spin without participating. You try to remember the letter you wrote to yourself, where you hoped you’d become a better human. You try to remember that this is a process, that despite what your inner puritan thinks, you need this time. You listen to the news and feel lucky and guilty that people all over the world are going through so much worse than you went through; that they are getting on with it, when you aren’t so much. You think you are a spoilt, developed-world brat; again you try to tell that inner puritan to be quiet.
Before you know what to make of it, you are on a magical island. The island of your happy childhood memories, an island so full of familiar and comforting smells, the island that healed you the last time you were broken; the place you wanted to be for the whole of last year. You are there, you made it and it’s overwhelming. Amid the quiet and the trees there’s nowhere to hide. You aren’t writing 12 hours a day and creating masterpieces, like you anticipated. You are staring at the most beautiful view, we are talking panoramic postcards in every direction, and you are scared.
I’ve just finished reading Kate Gross’ Late Fragments: Everything I want to tell you (about this magnificent life). It’s so open and her writing about chemo is spot on. She died at the age of 36, having packed a lot into a far too short life. She is brilliant and honest. I started the book to exorcise demons, to kick myself in the bottom, to try to figure out what’s next.
You see, what this time off and my island is teaching me is that I’m a lot more scared than I would like to admit about this cancer coming back. I’m scared that I dodged the boomerang but it’s looping in a slow arch back. I’m scared because it happened to my mum. I scared because I don’t think I can be brave a second time around. It’s a paralysing fear.
I’m scared because every decision these days feels heavy, decisions echo down the years but what if you only have 2 years left or 5 or 10 and what if the decision you make is wrong. I’m scared that all that went down last year won’t matter, won’t change me. I’m scared I’ll waste what I could’ve learnt, fritter away the opportunity. It needs to mean something, I really need it to mean something.
It doesn’t seem to help, the old adage that ANYONE could be hit by a bus tomorrow, so we should all be living for the moment. It’s undoubtedly true but it doesn’t free me from my fear, it makes me scared of buses.
I want to live a full life, a life of interesting work, of friends and loved ones. I want to learn more, do more, be more. I want to be the very best version of me. It’s just I want it so badly I don’t want to mess it up.
So I’m scared and at the moment the only thing I feel I’ve learnt is that if I write about it, if I open those curtains and let the air in; it might not change anything, it might not dissolve the feelings but I can look at it more easily, face to face.
May 18, 2015 @ 16:51:23
You don’t know me, but I’m a friend of Hannah Lovell’s – she pointed me towards your blog a little while ago. My boyfriend Ben had Hodgkins lymphoma in 2011-2012, and went through chemotherapy. He’s a song/theatre writer and performer and has written an award-winning show called The Lion about his life, which he’s touring around the US right now. His philosophy is that making something good, making art, out of something bad not only allows us to gain some control over it, but also to turn something shit into something really worthwhile.
You write very beautifully, and honestly. It seems to me that you’re doing the same thing – turning something shitty into something worthwhile, through art, and honesty. And that’s really something. Something brave, and worthwhile, and good. I didn’t know my boyfriend back when he was going through treatment, or immediately afterwards when he felt lost and confused and as though he should have learned some wise life-lessons from the whole experience, but I know he felt the need to get away, to disappear for a while afterwards, to try to heal physically, emotionally and mentally. Even now every little pain and muscle ache makes him afraid it might have come back. If the whole “battling cancer” metaphor is true then I guess it’s completely understandable to feel as though you’re suffering from PTSD afterwards.
So, I don’t know if this will be of any help or just be another random person thinking they understand the situation you are in right now, which is pretty impossible. But I wanted to reach out and say how much I like your writing. And I think by the very nature of writing about it you are doing something good, and taking a step down the path towards dealing with something pretty huge and traumatic.
Here’s a short video of a Ted talk Ben gave recently on the whole thing (including a super sweet animation at the end):
https://youtu.be/TMoYQhyxViw
I don’t know if any of this helps, but for what it’s worth, I think you should keep doing exactly what you’re doing.
Jemima.x
May 14, 2015 @ 13:09:36
Just finished reading “How to be a Woman” by Caitlan Moran. She recomnends not worrying about who you are — not to worry about “being” (i.e. stop worrying about being the best version of yourself).
Instead she gave up on being and started doing. Not sure if that’s helpful but perhaps instead of worrying about changing after this experience or making it mean something by being better or being different, you can instead release yourself to start doing whatever it is that you want. Your writing is a great doing, you do it well. Keep doing!
May 14, 2015 @ 06:47:35
oh dear girl. I am sending you the biggest of hugs. I imagine this time off might be a bit like when everyone says – ‘you need to give yourself time to grieve’. It’s all well and good but you don’t really know what that means. I remember ma always used to say that every headache or back ache she ever had after BC was like a gremlin which niggled in her brain- ‘is the cancer back?’ It would be unnatural if you didn’t have that fear. But you have to focus on how smoothly every thing has gone- the lumpectomy vs. what might have been a double mastectomy has to be a good sign. Of course I know it easier for me to say. As usual in these times there’s nothing to fix this, no matter how many bucket lists or bungee jumps you do. But without sounding negative I’d imagine the fear is here and it’s here to stay. And rhere’ll be something to keep it in check you just need to find it. I recently had some hypnosis for anxiety which I imagine would help immensely. As always, love you deeply dear girl. xxx