I use this title ironically, due to a hashtag I’ve seen floating around when scrolling aimlessly through Twitter this morning, and finding none of the quotes or photos attached to it particularly motivational.
As you can imagine, I’ve found my motivation from sources that don’t include a green juice (the lack of raw veg in my life still proves to be a source of great annoyance to me), a gym trip (something that I never would’ve entertained even when healthy. Even I can’t use cancer as an excuse for that one), nor from instagramming a quote about how I should “Live life to express, not to impress”.
I’ve found my motivation from friends visiting, from half an hour of fresh air every day, from being able to lift my tender arm enough to wash, making a cup of tea and getting it back to my room by myself, whilst navigating a drip stand around, too. From the small achievements that make up a life on the ward.
And the response I’ve had to these things, whether you can see me doing them or not, is amazing. People telling me I’ve made them feel more confident about their problems, or that I’ve shown them things that are important in life, or made them appreciate the little things, like I now do, is great. It’s definitely a source of motivation.
But, at the end of a hard week, such as last week, and the fear of another even harder one, that’s not what I’m always writing for. I’m not a motivational, mentally sound guru, I’m not here to tell people to compare their old lives to my new one, or to write Facebook statuses about how everything will be alright in the end. I’m a positive person, but it’s so damn hard to be positive all the time. And that’s what I really wanted to talk about. This might turn out to be the hardest post I’ve written so far, because it’s not carefully planned, it’s not full of facts about needles and blood levels, which I can easily explain to someone. It’s messy and confusing because that’s where my head’s been at this week. And when people tell me that I’m being brave, I almost feel guilty, because maybe from where you’re standing, I am brave, but from where I now live, I just feel like I need to man up. I’m surrounded by sickness, by drips that aren’t mine, that beep throughout the night, and by people who aren’t as lucky to have as big a family as I have to visit them. People who I’ve walked past every day and have never seen able to get out of bed. I am lucky, I am so, so lucky, compared to these people.
And so I’m grateful for this, 95% of the time. But, suddenly, I want to talk about when the smile on my face isn’t always genuine. When I don’t want to have a long chat about boys with my nurse, or have to fend off a nutritionist hounding me with her scales, desperate to remind me of the few pounds I’ve put on since I arrived. As I said, this is rare, but it’s been nagging me to the point where I feel I need to get it out. To tell people that having cancer isn’t always about people buying you hand creams and socks, or even having to think about scans and remission. No one knows how they’ll react when put in a situation like this, and I’ve spoken before about how much my positive reaction to it all has surprised even myself. But, from my limited experience, positivity can actually exhaust you more than chemotherapy can.
Cancer can be just as much about the little things that tip you ever the edge. And I don’t mean the good little things this time. I mean crying to two friends and a whole family who ask how my uni work is going, and then not being able to move on from my anxiety over it even long after they’ve left, regardless of how kind they’ve been. It’s deliberately not telling the doctors that you’re having stomach troubles, because you’re embarrassed, and then regretting it later when four of them appear in your room to ask for an update. It’s staring at a potassium drink that you know that you need, but actually not being able to reach out your hand and just swallow it, because you know how crappy it tastes. It’s cancelling visitors, and not having the excuse that the drugs have tired you out too much, but that you just need to be by yourself, even if you can’t explain why. It’s being scared to sit up in bed in the morning, because yesterday a chunk of your hair fell out in the shower, and you’re scared to see more of it left behind on your pillow. Worst of all, it’s when your mum takes you downstairs to look at wigs, hating them all the second you lay eyes on them, and having the woman in the shop take it off your head because you can’t even bear to see a face in the mirror that looks so different from yours. It’s welling up over a blocked PICC line. It’s willing your eyes to stop tingling, threatening the inevitable, when the doctor says he has nothing else to say, because all you want is some good news to kickstart your Monday. And who doesn’t?
I have spent the last three weeks thriving, feeding off my own positivity. I’ve handled all the lifestyle changes; moving back home, and then straight into a hospital, being under the watchful eyes of a constantly rotating staff system, changing how I look against my will, nagging university tutors to send work to me, so that I can act as if nothing has changed. And I’ve also fed, obviously, off the positivity and kind words that everyone I know, and many people that I don’t, have given me. And the simple act of coping, and coping well, has made me feel good. Confident. But, as I’ve spent the last week trying to explain to my ever-patient mum and some friends, coping with all the big stuff, the move, the poisonous drugs, the looming hair loss, has made the little things somehow harder to cope with. And that’s the bit you don’t expect. It would be easy for me to justify hiding under a blanket and throwing a strop about how unfair the last nine months have been to me, and how cruel cancer is. But when you just want to howl at the innocent consultant that your lack of side effects makes you worry that your treatment isn’t working (what the bloody hell do I know?), or to rip a platelet transfusion out of your arm because you’ve convinced yourself that it’s getting in the way of your work (it probably isn’t), or your hands curl up and shake when a nurse tries to move you out of the room that you’re settled in? Not quite so easy to understand. Especially when you’ve been smiling and chatting with friends less than 24 hours before. My loud sighs aren’t always over another inevitable round of chemo, they’re usually just because my phone is refusing, yet again, to connect to the hospital wifi. And how trivial is that, really?
I wish I could sum up my overall point for you. Maybe it’s that I feel like a fake for being the smiley, loud person that I genuinely am, even in the face of illness, when I spend another 5% of my time acting, essentially, like a bit of a brat over nothing. Maybe it’s when people tell me they’ve learnt something from my words, and are now trying not to take things for granted, I feel guilty because I take a lot for granted, too. My amazing support system being one of them. Maybe it’s that, no matter how many great people are in your life, you still just want to grab the nearest nurse and have a lengthy howl on their shoulder, but you’re far too embarrassed to try. No one wants to be the ungrateful one, but, contrarily, everyone deserves a bit of a stew in their own tears sometimes, too. Where do you draw the line and pick yourself up again? When does it get easier? Maybe that’s what I’m wondering.
I think I sense an appropriate end to my word vomit approaching. It’s that, or someone will start telling me that this is all part of my ‘journey’, or that I should make lemonade with life’s lemons, and I just can’t be having any of that rubbish.
Let’s hope for a slightly cheerier post next week, perhaps with some accompanying cancer gore. But I’m not going to apologise for today. I’ve done enough apologising for my feelings to last me a lifetime. Maybe, however, what I’m asking is if someone can share their #MondayMotivation with me? Because I seem to have lost mine.
Hi Alice I am very good friend of Lucy and Luke’s, we met years ago on holiday in Sardinia when we were there the same time as you and your family. Your posts are inspiring and well done for keeping it going.. you are amazing.
Michelle, Paul, Lottie and Amanda.
Thanks Michelle, that’s so kind of you x
You’re amazing Alice xx
This was so moving al, your writing is amazing!!! No one likes lemonade anyway, it’s all about lime and soda! Xxxxxxxx
I met your mum on her 18th birthday when we started at Norlands. I moved to Australia 3 years later and we used to get together as a big group with partners and families when I came home . That was when I met you. I know how lucky you are to have such an amazing, supportive family but it must be a huge challenge going through your treatments and trying to stay positive all the time. You are a talented writer, an inspirational person, daughter and friend but you are still only human. What you (and your family) are going through is to use a technical term … shitty but I have to believe you will get through it. Whenever I have faced a challenge (they have only been very trivial and minor ) then I focus and go to my happy place. Mine is on a beach about 2 hours from here, the sun is shining and all I can hear is the waves. Perhaps you could start planning where you will go when you are able – I would love you to come to Australia . Take care of yourself Alice and know that from all over the World we are cheering you on during the good and bad times. Xx
Thanks Julie, very kind of you, and great to hear from someone so far away! May be a while in getting over there myself, however x
Hi Alice, you don’t know me but I feel I know you through your posts (via Clare Davies & Bianca Pearson’s link on Facebook (my daughter Alana is in year 8 at AWS)). I just wanted to say that I always read your amazing blogs and I’m totally in awe of your strength and courage. Your blogs are wonderfully written and truly inspirational. My dad is currently fighting AML so although I can’t imagine how tough it is to be the patient, I can relate to your words. I wish you all the best for your fight against this horrible disease but given your tenacity & bravery I have no doubt that you will conquer. With best wishes, Katie X
Hi Katie, always good to hear from a fellow AWS club member! Best wishes to your Dad x
I can’t speak for #MondayMotivations, least of all, because it is now Wednesday, but “brave” can be a horrible word to have directed at you (up there with “inspiring”), regardless of how true it is. It is always genuinely and kindly meant but I know few people who have been told they are who don’t sit worrying about being a fraud because people use that word with them.
Your honesty is something else though, Ali. That does take guts: emotions are messy things to write about, and you write about them damn well.
Thanks Ewan, good to hear from someone who gets it! Thank you, you too. Wishing you the best in your adventure pursuits now you’re living a study-free life (very jealous) x
Ha! Thanks, the world’s a bit scary out here but definitely was the right decision for me. You’ll be out here in no time too, freaking out over job hunting and council tax and being told you can’t eat popcorn for lunch as you’re not a student anymore (lies, you can always eat popcorn for lunch). xx
You don’t know me either, but I’ve heard about you through a friend of your family.
I don’t know where you have found it within you to be so brave for so long. But you are human and it’s ok to be scared and down and very far from brave some days. You also don’t have to feel like you need to support all your family and friends all the time.
It’s probably because ( it sounds to me ) like you are and always will be a thoughtful and caring person.
Sweet girl, be kind to yourself too .
You deserve a day off from bravery.
Cry under your blanket , tell people ‘not today thanks’ and just do what you feel. You’ll probably feel differently tomorrow.
Love from a mum and nurse
Thanks Zoe, very important words to remember! x
Alice, it sounds to me like you are doing just fine and good for you posting this one, I don’t think there is anyone who won’t relate to your sentiments…you are human and that needs no excuses. Thinking of you lots. Cxxx
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