Four: ramblings about chemo.

The number two is my lucky number. It has been for as long as I can remember, and I’ve made good use of it. Its handy, having a lucky number, because it provides shortcuts. Easy decisions. Always pick the second one, the multiple of two, the option that I can somehow, in some way link to this sacred number of mine. No matter how loose the link, the librarian of my mind pays close attention to when two has served me, like the time I made my money back on roulette by placing my last chip on the number two, and stores the memories as evidence, encouraging me to keep my faith in my lucky number. However, the librarian likes things to be simple. She wants my mind to be organised, to make sense, to have rules and regulations that are always abided by. She does this to make the world outside appear predictable and less threatening. And she takes it very seriously. So, she readily shreds the memories of the times the number two has failed me. In the bin. Didn’t happen.

So, in reality, the number two is my lucky number not because it’s lucky, it’s because having it brings me comfort and containment. The little girl that chose her lucky number didn’t know that, she believed, wholeheartedly, that two was special. And whilst now, I know what my minds doing, I allow the librarian to do her thing for that little girl. Why? Because, why not? Allowing two to be my lucky number has never done me any harm.

When my second round of chemo was approaching, my mind reminded me of the magic of number two. My first round began well, my side effects were relatively minimal and the emotional toll of going through cancer was, honestly, less difficult than I had predicted. On reflection, I think starting treatment lifted my mood and squashed my anxiety because I felt, for the first time since being diagnosed, the sense of control I had been so desperately searching for. I moved from a passive position to an active one. From imagining that cancer was spreading through me second by second, to visualising chemo working its way around to weed it back. I felt good, I exercised, I engaged in meaningful daily tasks and got through the first couple of weeks relatively easily.

When my hair started to fall out, the week before my second cycle of chemo, my emotions jumped from baseline to sky high and my mind was a difficult place to be. I wrote about it in my last blog post, ‘Three. Ramblings about hair loss’, and that helped me to work through the mess and the pain to a place of acceptance. But reaching acceptance does not mean you get to stay there. After writing the post, the sadness, fear and anger quickly resurfaced as I was endlessly faced with the reminder that my hair was leaving me. It was everywhere. Shedding. All. The. Time. I struggled with my thoughts. I felt frustrated. I so desperately wanted to reach that place of acceptance again because, quite simply, I’d had a taste of it, and it was nicer there. But I couldn’t reach it. There was a huge, ugly, concrete wall in the way, blocking me from the paradise of acceptance.

After irritating Matt for a couple of days with my constant, “ergh Matt look, more hair” groans, I decided that the only way to knock that hideous wall down was to bite the bullet and shave my head. I made the decision and acted on it before I could change my mind. I tied my hair into bunches and Matt began his work, chopping off bunches of hair with an old pair of hair scissors I borrowed from my friend. He then worked his way over the jagged mess of short hairs with hair clippers that my mum used to use on our dog (the remains of his fluffy hair were still in them when we took them out the box). Kind of tragic, but most importantly, empowering. I mean, it was obviously a weird experience. Full of so many different emotions, I don’t think I can even label them all. But it worked. The wall crumbled. I looked at myself in the mirror and I felt at peace with my bald head. I was reunited with my place of acceptance and I spent the next few days there.

Two days before my second round of chemo, my oncologist examined me and told me he thought I was responding well to treatment. He said he estimated that the lump had halved. Divided by two. Lucky number two doing its thing. I presume the librarian grabbed this opportunity to store yet another ‘enchanted number two’ memory and whilst she was there she pulled out past events where two had succeeded and projected them to front of my mind, preparing me for a good round ahead.

On the day of chemo, I put on Willow (my wig), practically skipped my way to the big, comfy chemo chair and eagerly awaited the cannula to be inserted so that my body could get my second, lucky dose of what I like to call ‘life juice’. I felt a bit conscious in Willow, and I started to notice a stream of thoughts that told me the nurses were looking at me differently, like they knew I was wearing a wig and like they pitied the cancer patient I had so clearly become. I tried to let those thoughts go and I tried to cling onto the paradise of acceptance, but they were already having an impact. Grey bricks were quickly reforming that harrowing wall. I looked to the floor, ashamed.

But as I sat there, in the big comfy chemo chair waiting to begin, a nurse approached me and asked me if I wanted the cold cap. I awkwardly told her I was wearing a wig and as her mouth dropped to the floor, I got the reassurance I thought I needed. She thought it was my real hair, or at least she pretended to, and we had a nice chat that opened with talk of hair, took a myriad of tangents and closed with the lovely reminder that I am still Ellie. Now that’s what I needed. Blip overcome, I got my dose of ‘life juice’ and left the chemo suite ready for the good round ahead.

And then number two stopped being ‘lucky’. Nausea. Oh my god the nausea. There I was, bed bound, shouting for Matt to please stop cooking that damn, suffocatingly potent food (fajitas lol). Head over the bin. Sweating. Shaking. Trying to be sick but the medication not allowing it. I pleaded for Matt to stop the smell. He moved so quickly, turning off the hob, opening all the windows and shoving towels in the gap under the bedroom door. I sat on the bed, with crossed legs, and tried my hardest to just calm the hell down. I breathed deeply for what felt like ages and as my heart rate slowed fatigue took over and I lay down to fall asleep. I can’t fully remember that evening. I remember slowly eating a piece of toast. That’s about it.

The next day the nausea had slightly settled, and I remember thinking, ‘wow that was shit but today will be good.’ My mind simply hadn’t prepared me for anything other than the cycle going well. I got up. Felt a bit weird. Why are my knees buckling? Maybe I slept funny. I brushed my teeth. Felt even more weird. Why am I dizzy? Maybe I’m dehydrated. And then before I could even begin getting ready, I was back in bed. Exhausted from BRUSHING MY TEETH? I knew I should feel stressed, because we were moving from our flat to my mum’s house and I had a lot of stuff to sort and pack and prepare for. But I was too tired to care, and bed is where I stayed. Over the next few days, I had small bursts of energy and I tried to utilise them to help with packing, but my efforts were met with overwhelming fatigue. Matt had to do most of it and I still feel so bad about that (he also packed up our last flat on his own because I was Greek island hopping, oops. I guess this time my excuse was more valid). My body felt like lead - heavy, dull and colourless. My mind felt the same.

On the day we moved to my mums, I managed to sit outside in the garden. We chatted for hours in the sunshine and once the sun faded away and the evening chill creeped in we burned wood in the chiminea just so we could keep going. My mum had been completely self-isolating for a few weeks in preparation for our move and it was so good to just hug her be with her. I felt giddy and could see the colour gently returning to my internal world (I imagine it like the scene from Trolls, if you know you know). I genuinely thought I’d wake up the next day feeling more normal, more me. Went to bed, woke up. Got out of bed. Nope. Back to bed. What the hell? Too exhausted to do anything. Nausea nagging at me. Body and mind trapped by fatigue. Heavy, dull and colourless.

This pattern lasted for a few days. I was constantly pulled towards the tease of energy but when I grabbed for it, I was hit in the face with fatigue. KO’d. I vented to Matt and my mum, easing the frustration, but I just felt fed up. I struggled to reply to messages, I struggled to watch TV, to read, to do anything. My emotional capacity was full to the brim and the smallest trigger would cause me to overflow (I cut my finger on a tin of tuna and sobbed HYSTERICALLY, genuinely so embarrassed about that now). The worst part was, I had not mentally prepared for it at all. I felt like all my strength was gone. I felt like a fraud. Everyone told me I was strong. And I had been. But with no energy I felt weak. And I felt ashamed. My lucky number two had proper mugged me off.

I remember looking in the mirror thinking ‘who are you?’ Its weird, to be on a journey that teaches you so much about who you are but simultaneously makes you lose yourself. I stared at my bald head and my tired eyes. I thought about the contrast between my flushed rosy cheeks and my dull colourless mind. And then I was reminded of a comment my nephew, Joshua, made a few weeks ago when my sister first showed him a picture of me with no hair. Joshua is a character. He’s one of those 4 year olds who says what he thinks, no filter. And most of the time he is brutally hilarious. I love that about him. But it made me anxious. What was he going to say? I predicted a list of potential 4 year old insults, preparing myself to take it with a pinch of salt. When I got the message from Sophie to say she had shown the boys, I waited and watched the screen anxiously as she typed their response. Oh? She wrote, “Joshua said you look like a rainbow.”

A rainbow.

At the time, I had no idea where that had come from and whilst it totally warmed my heart and made me feel good, I didn’t give it much more thought because I didn’t really understand it. But as I looked at myself in the mirror, I started to interpret it. I realised that the rainbow Joshua saw in that photo, the day I shaved my head and posed with an empowered smile, had faded. Not because of cancer. Not because of chemo. Because I had allowed it to. I was investing all the energy I had into feeding the storm of my mind. Dwelling on the things I couldn’t do. The thoughts that told me I was weak. The thoughts that told me to be ashamed. The heaviness, the dullness, the colourlessness. I knew the colour was still in me, no matter how small it had become, I just needed to find it. I needed to nurture the rainbow, instead of feeding the storm.

So I did. I forgave myself for lounging on the sofa all day. I put the thoughts that were telling me I was giving up to the side and I focused on the ones that told me I was resting in order to get better. Resting is self-care. Self-care is productive. I reminded myself that crying absolutely does not equate to weakness and that allowing the emotion in fact made me feel strong. I ate when I wanted to eat. I asked for help when I needed it. I watched TV when I could. I walked around my garden in my dressing gown. I laughed. I cried. Matt and my mum rallied around me and their support reminded me how loved I am. The colour grew. Day by day. Brighter and brighter. Now, I’m feeling almost back to my normal. I’m joining virtual meet ups. I’m exercising when I feel up to it. I’m taking things slowly, but I’m doing ok. I’m not so full of rainbow that I could burst into song and dance at any given time. My rainbow is vulnerable and I need to be careful. But its there. My next round of chemo is this week. Third time lucky? I’m joking. I’m prepared.

In the outside world, rainbows come after a storm. People often say that in our internal worlds, in our minds, this happens too. The storm, being the difficult time, will pass and the rainbow, being the peace and joy, will follow. This gives us hope and whilst I appreciate the sentiment its just not how its working for me. Weather follows different rules in my mind, so whilst I’ve found my rainbow, my storm hasn’t passed. Its still there, trying to grow at every opportunity. I have to make sure I don’t fall into feeding it because it grows so quickly and it takes all my energy with it. I can’t get rid of it. When I try, it just gets bigger. So I allow it to take some space in my mind but I choose to focus my attention elsewhere. I choose to focus on the rainbow.

I think the rainbow, for me, represents acceptance of my current situation and the freedom acceptance brings. The freedom to experience hope. The freedom to experience joy. I’m pretty sure Joshua didn’t think about all of this when he said those words. But I’m grateful for whatever reason he did. Because he helped me to reach the conclusion that the rainbow will always be in me. Even if it’s a tiny speck. If I nurture it, the colour will find its way back. So whilst chemo cycle number two has been a bit of a bitch, its taught me a valuable lesson. Maybe number two is lucky after all. Nope. That bloody librarian needs to have a day off.

I always want to end my blog posts with something positive. I want the people who read them to know that cancer doesn’t have to be entirely shitty. But I also want to be real. Chemo this time round has been hard. Life outside my own cancer bubble has also been hard. For reasons I don’t feel I can openly write about in this post. We lost someone extremely special to cancer, someone who has inspired me so much on my own cancer journey, and I’m sad and I’m hurting and I’m so angry with cancer that I don’t want to think about how it can be positive. But that means cancer wins. So. I’m still coping. I’m learning. I’m growing. I know I am strong, despite feeling weak. Having cancer showed me the strength I never knew I had. Having cancer taught me that no matter how grey I feel, the colour is somewhere inside. That’s the beauty in the c-weed. But also, f*ck you cancer.