I’m going to ask you to do something with me. To use your imagination. I thought about asking you to close your eyes, you know, to really make this like a mini guided visualisation. But I realised a major flaw in this suggestion; you wouldn’t be able to read the guide, and that would make this pretty pointless. For that reason, I recommend you keep your eyes open. Unless you can play this out loud… that could be cool. But a bit technical. Maybe effortful. Yeah, stick to keeping your eyes open, guys. Let’s keep things simple.
That was a bit of an unexpectedly long-winded intro. It kind of reflects the ‘chemo brain fog’ I find myself facing at the moment. I feel very slow - a bit like the sloths from Zootropolis (side note: the sloth scene is one of my favourite scenes ever. Yes, I’m a child). Let that be a warning that what follows may be… rambled. God loves a trier, though.
Ok. You ready?
I want you to imagine a bedroom. You know this room well; you’ve spent a lot of time in here and its very familiar to you. You know where the window is, the furniture, the lip of the rug that you sometimes trip over. You know where your things are stored, where your clothes are hung, where those incredibly random objects we all own lay. You know the feeling of the floor on your feet. The squidginess of the bed. The smells that fill the air. Think about that clear image of the room in your mind and make up a visual representation of it in there. Wall to wall, ceiling to floor.
Now I want you to imagine its night-time and its dark outside. You’re on your way to the bedroom to get ready for bed. As your hands push the bedroom door open, there’s a sudden power cut. The lights go out. Your room is pitch black and you can’t see a thing. Anything. At all. Just darkness.
You need to get ready for bed, but without your vision you lose trust in your sense of familiarity with the room. How close is the cupboard? How many steps to your drawers? What did you leave on the floor? There’s definitely something you’re going to trip over or stub your toe on.
You get that “shittttt” feeling.
Your arms stretch out ahead, and your hands swing around in the air, feeling for obstructions, like you’re doing some style of contemporary dance. You know you look like a bit of a knob, but you must be cautious. It’s strange how anxious you feel without your sight. How unsure of everything you are. You shuffle your feet, carefully taking tiny penguin steps, to where you think you’re meant to go. You reach your drawers and you think you’re getting somewhere.
You pull open the drawers and feel around for your pyjamas. Got them. But wait. That doesn’t feel right, is that your pyjama top or is that the t-shirt you stuffed in there the other day? As your hands frantically try to figure it out, you lose focus and you accidentally knock something off your drawers. You hear it smash to the floor. Great. Now there’s sharp shatters of said object surrounding your feet. But without your vision, you can’t see where. Now you’re feeling more and more anxious. Probably quite frustrated. What are you supposed to do now? You feel stuck. Hopeless.
You wonder how long this power cut will last. You think about how its getting in the way. You miss the light. You realise you took it for granted. From light to dark. From familiarity to wariness. All in a split second.
That’s what the words, “you have cancer” did to me.
Let me explain.
The bedroom represents life. Pre-cancer I felt very familiar with my life. I was Ellie, the trainee clinical psychologist, the gym goer, lover of boozey nights and holidays with friends. I liked (lets be honest, loved) Nandos and chipsticks but also really enjoyed celery sticks and homecooked (by Matt) meals. I enjoyed being outside. Festivals, my god I loved festivals. The beach. Had a thing for escape rooms. Was probably a bit too obsessed with the cinema and sporadically bowled (very badly). I was in a book club. I liked to support people. I liked to be supported back. If I had a problem, I knew who to go to. I got really stressed sometimes but I knew how to manage it. I loved being around my family. I occasionally played the piano. I was going to get a dog. I was going to get married. I was going to have children. I was going to have a nice enough house and I was going to travel to so many cool places. I was going to get one of those maps where you put pins in where you’ve been. My map was going to be pretty full. I knew my history, my present and my future. I knew what I wanted, and I was going to make sure I got it. I wasn’t afraid of working hard for it. I wasn’t afraid to believe that my dream life would become my reality.
The power cut represents the impact of going through cancer treatment during a global pandemic. When I was diagnosed, the familiarity of my life came to a sudden halt and I was faced with a new, bleak reality. My present was consumed by cancer and Covid-19. Tests. Scans. Treatment. Doctors. Nurses. Hospitals. Drugs. Side effects. Hair loss. Nausea. Fatigue. Weight gain. Anxiety. Low mood. Paranoia. Fear. Isolation. No work. No distraction. No holidays, festivals, beaches, bowling. A whole new routine. So many new and unfamiliar things to navigate. In the dark. I lost trust in my usual way of doing things. My autopilot malfunctioned. I felt so cautious, taking tiny penguin steps through the days, because I had no idea what I was doing. My temperature is slightly higher than usual. Is this ok? Do I need to tell someone? I have a rash on my stomach. Do I just ignore that orrr? I feel like I want to eat 50 bags of sugar. Is that normal? I can feel a pain down my whole arm. Is that my bodies way of telling me the cancer has spread? I’m getting lots of paranoid thoughts. Is my mental health getting in the way or do I need to believe in them? I don’t know if I’m me anymore. Is that to be expected or am I really losing myself? I felt trapped by the uncertainty of it all.
The struggle with the simple task of getting ready for bed represents the struggle with living life whilst facing treatment. Throughout my chemo I found it difficult to make plans because my treatment side effects were unpredictable, and I couldn’t predict whether I would feel up to it. I couldn’t see how the days ahead of me would pan out. A couple of weeks ago (maybe months ago? Time is a blur) we planned for my Nanna to go to my mum’s house and sit in the garden. I was so excited to see her and spend time with her. I had it in my diary for weeks. I woke up feeling fine. Got ready. Felt fine. Nanna came over. Felt fine. And then nope. Dizziness and exhaustion sent me to bed. Gutted. It made me want to avoid making plans because (1) I couldn’t handle the guilt of letting people down and (2) bailing on plans made me feel like I was succumbing to cancer (until I realised that not making plans at all meant that I was succumbing even more. Duh).
Reaching the drawers and thinking you’ve got somewhere before knocking something off them, represents the ups and downs of the past few months. The small wins. The times where things didn’t go the way I wanted them to. Relief followed by fear. Fear followed by relief. The “this is probably a non-cancerous lump” to “this is an aggressive cancer”. The “your cancer has been caught early and has not spread” to “your cancer is in your lymph nodes, but we won’t know the staging until surgery. In a few months”. The “godddd my hair is falling out” to “is my hair growing back?!” The “this drug will come with many horrible side effects” to “you’ve coped with this chemo very well”. You can’t directly compare your experience to another’s, apply it to yourself and predict how it will be. Cancer just doesn’t work that way. Its. All. So. Damn. Unpredictable. That inevitably brings anxiety. We like to know what we’re dealing with. To process, to prepare. Processing and preparing for a constantly moving reality is hard and tiring. I don’t know when the threats are coming, I don’t know where the sharp broken pieces lay. At times, I have felt frozen by the fear.
The anxiety, frustration and sense of hopelessness caused by the power cut represents the feelings I have had towards my future. The more life-plan side to things. I wrote about it in my last blog post, how the story of my life was actually never certain in the first place, but at times I’ve felt overwhelmed by the realisation that I am blind to what’s ahead. Its unsettling. Sometimes I find myself getting carried away with my fantasy future again. I imagine the holidays, the fun times, the dogs, the children. But then I remember that I have cancer, and my mind brings the fantasy to an end. It warns me to not get carried away. To keep my guard up. To be prepared for the worst. Treatment not working. Reoccurrence. Metastasis. I really hate that. And I challenge it and I try to let it go. But I know it will linger there for a while. I guess its kind of natural, to focus on threats. Its what our brains are designed to do and, to an extent, I’ve needed to accept that. I’ve just had to make sure it doesn’t take over. I don’t always succeed at that.
Cancer is not fun. We all know that. And that’s why its such a scary diagnosis to receive. All you think about are the bad things. The films where people look so ill, they are unrecognisable. You think about loss of self, loss of identity, loss of life. I have felt so unbelievably sad for those who have faced it before me. Because throughout my life I have been surrounded by narratives of cancer being gloomy. Of cancer being something that is dark.
But the thing with darkness, is that your eyes adjust.
So, if you will, I would like you to go back to the visualisation. To imagine the bedroom again. But this time, I want you to imagine the feeling you get when your eyes slowly start to adapt to the darkness. You notice a corner. The edge of the drawer. And before you know it, you can actually see your hands in front of your face. How relieving does that feel? You can finally start the process of getting ready for bed. You start to realise that it is actually doable. All you needed was the time to adjust.
Over time, I have adjusted to my new reality. And there is absolutely no way that from the day I was diagnosed I have been solely in the dark. The light has trickled back into my life. Sometimes it fades and I feel like I can’t see again. But if I’m patient, it comes back. I have days where I allow myself to feel excited about things that are upcoming. To think about having a head of hair. To think about all the things we can do to our new house. To daydream about holidays. The word cancer doesn’t make me squirm anymore. Identifying as a cancer patient doesn’t make me feel uncomfortable. Having chemo doesn’t scare me. I don’t feel the need to take my temperature every 3 seconds. I tell myself I’ve got this. I believe I can get through this. Sometimes I allow myself to envision the other side. Life beyond cancer.
But the light comes from more than just adjustment. I’ve written about it before, and I’m going there again, you guys are my light. From family to friends to colleagues to essentially strangers. You’re like the emergency torch. The flash on the phone. The matchstick if we’re really desperate. In big doses or small doses, together you help me to see more clearly. To focus on the positives, to distance from the negatives. To have fun. To feel. To smile and to laugh. To remember that I am me. Ellie. Girlfriend, daughter, granddaughter, sister, auntie, niece, cousin, friend, colleague. Giver of support. Receiver of support. I will never, ever, ever be able to thank you enough for guiding me through. For showing me your unconditional love. You make me feel so incredibly lucky.
I have now completed my 6 planned cycles of chemo and am having discussions about the next stage of treatment - surgery. Whilst its looking like I’ll need to have more chemo after surgery, I feel like I’ve ticked off a huge chunk of my treatment journey and I’ve got all the feels about it. Mixed emotions. Relief, fear, hesitation, excitement, pride all tied up into a bundle and thrown into my mind. It’s a little messy in there right now, but I’m taking the time to process it and make sense of it (not going to lie it’s a lot harder when your brain is as SLOW as mine is right now). And whilst reflecting on the end of this chapter of my treatment, I’ve been thinking about the people who have said to me how proud they are of how I have coped (thank you, by the way, its means a lot). I have been thinking about why they think that about me. I have been thinking about what I have done to cope “well”. And honestly, I don’t know what its all about. Character? Psychological tools from years of being in the world of psychology? An unbelievably robust support system? All of that? None of that?
But there’s something I keep coming back to. This idea that we don’t know our resilience, our ability to cope with adversity, with the darkness, until we are faced with it. If I knew what I was to face in 2020, I would probably have literally projectile vomited. I would have predicted that I wouldn’t be able to cope at all. I would have panicked. I think it would have been natural and valid for me to feel that way. But, for me anyway, there’s something different about imagining this situation and actually being faced with it. In the moment, I’ve found myself just keeping on going. Taking it day by day. Sometimes I take steps forwards and sometimes I take steps back. Its not easy. There are times that are horrible. I have cried. I have felt nothing. I have felt everything all at once. But I’m still going. I think without realising I was waiting for the light to creep in. It took time. But it came. Some of it came on its own, some of it came because I searched for it, some of it came because you quite literally threw it at me.
That light, wherever it comes from, is what makes me feel resilient. Having cancer has made me value the importance of this. For myself, and others, to know that we can be capable of more than we know. Whether that stems from resources from within or resources from elsewhere. To acknowledge our own strength, but also to acknowledge our role in nurturing the strength in others. I feel that I can face things I didn’t think I could. I don’t feel as scared of adversity now because of that. I almost feel like I could take on anything. I hope that if you worry about your ability to cope with adversity, from my experience you are able to tell yourself that you might have this undiscovered resilience too. Waiting for you if you ever need it. So, thanks for that lesson, cancer. You’re not all that bad. But also, piss off.
Discovering the power of light, from within and from those around you. That’s the beauty in the c-weed.
