Sunday 7th June
For the first time since creating this blog, I’m sat here with no plan, no subject to explore and no particular message to share. I’m writing not because I’ve mentally formulated a piece of writing that neatly flows down the curves, loops and bends of my stream of thoughts. Not because I’ve digested a particular feeling, somehow made it into a metaphor, and feel ready to share it. I’m writing because I feel like I need to. And I have no idea why.
It feels a bit daunting, sitting here on the sofa. My legs are crossed, and my dressing gown hood is up, covering my hairless head whilst simultaneously disclosing something about how I must be feeling. Guarded? Maybe. Vulnerable? Probably. I’m staring at the screen of my budget laptop, twiddling with my rings, zoning in and out of the conversation my mum is having with my brother and his girlfriend on the phone. They’ve got a bargain from Homesense and my mum is buzzing about it. She loves homeware. I blame her for my obsession with shopping for décor for my new home. Its nice, to hear their conversation in the background. But zoning in on their chatter is a clear attempt to distract myself from what I need to do. So back to the screen of my budget laptop I stare, searching for the words that will tell me why I feel the need to write.
Still nothing.
I find myself wanting to focus on anything other than the emptiness of my mind. So, I focus on anything. Typing. Typing is kind of cool. The letters stay in their place and my fingers foxtrot across the keyboard, rapidly typing out letters which make up words, which make up sentences, paragraphs, a narrative. I don’t even have to look; my fingers know exactly where to go, and the process appears flawless. But its not. Typos happen so regularly I stop noticing. I spell words wrong. I make grammatical errors. I make mistakes. Sometimes I catch myself and I amend them, sometimes spellchecker catches them and amends them for me, and sometimes they go completely unnoticed. A bit like life really. That’s an interesting one. Typing is like life? How I make these links I do not know. I’ll digest that one later.
Monday 15th June
After over a week of “digesting”, I’m not sure how much closer I am to understanding where I was going with that one. I’ve been feeling pretty low this past week. I don’t think feeling low is something that is particularly unexpected in the circumstances I find myself in. But it doesn’t make it any easier. I’ve been feeling frightened about my future, angry at the world, frustrated with my lack of purpose, lack of things to do, lack of control over how I can live my daily life. Constant reminders that I’m highly vulnerable to this little, invisible, shitty virus that could be lurking anywhere. Stepping outside my door brings genuine threat to my life at a time where all I want to do is make the most of it. At times this week I’ve lost hope, I’ve given in, I’ve moped around, showered by self-pity, and I’ve denied the umbrella of support offered to me. I wanted to feel low. It felt important to feel encompassed by it. Like I needed to.
In all honestly, as I sit here typing today, I think I’m still there. Very much stuck in this low feeling. I’m not sure I’m ready to move on from it yet. So, I will leave it be. And eat chocolate and wear PJs and watch everything on Disney+. What? Definitely acceptable.
Thursday 18th June
Well, that was deep.
But I’ve come a little further. I’ve spent so much time in my own head I feel likes my eyes are inside out. Its been… tough. But insightful.
I didn’t expect this in the story of my life. It wasn’t what I had planned. I’ve had my plan for a really long time. Professionally - try hard at school, go to a good Uni, do a masters, get some good work experience, do the clinical doctorate, qualify as a clinical psychologist. Socially – build strong relationships, nurture those relationships, do fun things with people, travel the world, experience different cultures, settle into a loving relationship, buy a house, get a dog (or 3), have kids. Straightforward hierarchies which, on the surface, I have closely stuck to and was progressing through as intended. That’s not to say its been easy. I’ve put in a lot of effort. Behind the scenes I have worked my arse off. Because I always believed I could do it. I always believed I was on the right path. I believed it was all worth it. Putting in the effort for the life I planned for myself.
Until getting cancer.
The thing with cancer is that it puts everything to a stop. It becomes the focus of your world and, to an extent, you have to let it swallow you up because you have to act quickly, invest all you have into getting treatment and doing what the medical team and research says will help. Work stops, socialising stops, the plan stops.
And that’s where the typing comes in.
I thought my plan was like a neatly typed out narrative. The story of Ellie. Ready for publication. Nice and neat. But in this tidy narrative I neglected something very important. I’m still living, and living is unpredictable. The story isn’t finished. And the process of typing out a story is far away from the nice and neat end result of a published book. Just like when I type, I’ve made endless mistakes that I choose to correct or pay less attention to. I’ve veered off track so many times, sometimes knowingly, sometimes without noticing. The story line has changed over and over and yet I still convince myself that I’ve been neatly sticking to the same one since being a little girl. I think that’s my brains way of making the world appear more predictable. I think lots of us do it. It makes us feel safe in the bubble of our well-planned life. But that is not reality.
Our lives are a developing story. As their authors, we get a great deal of say about where they’re going. But sometimes things come up that we didn’t expect. And sometimes they are the things that make the story worth reading.
So, I think I know why I need to write. I think I need to update my story. I’ve realised that on my blogs I haven’t written about the details of my diagnosis or my treatment or what my medical team think about my future. Initially, this wasn’t intentional, but it became intentional. I’ve felt anxious to write it down. To allow myself to read it back. To allow it to go out in the world for you to read. It makes it real. I lose control as the author. What if you google the type of cancer I have and write the rest of my life off for me?
But fear of losing control only makes the fear stronger. And it takes over. I think the reason I’ve been feeling so low is because of this sense of internal pressure that I’m putting on myself to show the world that I’m still sticking to my original plan. That cancer doesn’t get to take that away from me. But, of course, its not possible and I’m failing. And that makes me feel, well, shitty.
I’m not sure how aware of this I’ve actually been. I think my constant use of metaphors is slightly contagious and, surprisingly, Matt experimented with a very helpful one (no offence intended, Matt just tends to think a bit more… objectively, rather than metaphorically). He told me he thought I felt like the toys from Toy Story when Andy begins neglecting them. From living in line with what I thought was my absolute purpose, my life plan, to suddenly feeling lost. From feeling like a valuable person, to worrying that people will move on and might forget about me. Forget that I’m trapped at home. Left in the ‘junk box’. He hit the nail on the head. Its no one’s fault that I feel this way, my friends and family are bloody incredible and I know how loved I am, I guess it is a case of timing. In the days where my thesis was meant to be handed in for my course and lockdown restrictions are gradually lifting for the non-sheilders, I’ve been starkly reminded of how off track I am. But I am going to feel off track during this. I am going to feel like my plan is falling apart. Because my attitudes towards my plan were never helpful. I need to remind myself that my plan was never set in stone in the first place. That this is just part of my ongoing story. So, the reason I need to write is because I need to share and embrace this unexpected tangent of my life.
One Saturday in February this year, I got in the shower, singing to songs, excited for the evening I had planned. DIY wine tasting with our friends. Whilst I mentally prepared the cheese and wine I was going to bring with me, I decided to check my boobs. And that’s when I found it. A small lump, secretly growing in my left breast. I had one of those rushes of adrenaline that flushes through your entire body, head to toe. But I convinced myself it was fine and reminded myself that I too often fall for health anxiety. I carried on with my shower, washing away the health anxiety with the shampoo. Down the drain. See ya.
When I got out the shower, dried myself and walked into our bedroom, I saw Matt and I, very unexpectedly, SOBBED. Who was I kidding? This actually could be cancer. Health anxiety didn’t leave, then. Tears were streaming, my hands were trembling, my words were fed by panic. Matt tried to reassure me, and I tried to pull myself together. After a quick call to my mum, filling her in and reassuring each other as a way of reassuring ourselves, I got ready. We went to the shops, we carefully chose our cheese and wine, we went to our friends’ house, we ate the cheese and we drank too much wine. I tried to be normal, to act normal, to think normal. But, of course, I couldn’t. I knew what I needed to do, and Matt and I drunkenly agreed that we would go to the doctors first thing on the following Monday.
We arrived just before 8am and waited in a queue of people with the same idea as us. If you go to my GP in person, you’re more likely to get a same day appointment. You also get to avoid listening to the slightly painful classical hold music – bonus. We were told to come back later that day. I was seen by a female doctor who asked some questions and did an examination. She didn’t seem particularly worried, but she told me she was referring me to the breast institute just in case. Just a precaution, no need to be alarmed. Phew. As she filled out the referral, she paused and then she told me she had changed her mind. She told me she was going to refer me under the fast track, suspected cancer pathway. This meant I would only wait a week to be seen, rather than two. She explained her reasoning, which is a little blurry now, but I think it was something to do with me having a family history of cancer and because of how the lump felt. She told me she still wasn’t hugely concerned, but that it was better to be safe than sorry.
I am a bit of an over sharer. I tell my friends and family pretty much all of my worries. So everyone knew. I was surrounded by reassurance, by stories of lumps being nothing scary, and I felt torn between feeling pretty chill and absolute fear. There’s a lump, but it’s probably nothing. The doctors referring me on, but she’s not that worried. It was like there was a tug of war going on in my mind but neither side was stronger than the other. It was constant, back and forth.
The waiting room in the breast institute is a scary place. The walls are calming, and the staff are lovely, but everyone’s waiting for examinations and fundamentally for news. There are posters with the word ‘CANCER’ plastered on the walls and the anxiety that I had walking in the doors, doubled before Matt and I even chose where to sit. But then we were called to go through, and the wonderful staff squashed the worry and worked hard to put us at ease. I was initially examined by a nurse. She told me that it was most likely a fibroadenoma, a non-cancerous cyst, but that an ultrasound was needed to confirm this.
We were sent to a second waiting room and my anxiety settled. When I was called through, I told Matt there was no need for him to come with me and I went in alone. Whilst he watched daytime TV gameshows on the old, chunky waiting room TV, I lay on a bed and a doctor began the ultrasound. A similar pattern followed, she checked, she said she wasn’t particularly worried, but she was hesitant due to the shape being atypical. She took a biopsy (they are not as scary as I had heard) and I left the breast institute under the impression that this was all precautionary.
I was booked in for a results appointment a week later. As we sat in the waiting area my stomach swarmed with butterflies and nausea creeped in. Ok, I thought, this is really happening. I’d sat in on a couple of cancer clinics in my role as a trainee clinical psychologist and I kind of knew the drill. The surgeon walked in followed by a nurse. Their faces told me the news before their words did. “I’m sorry to tell you that you have breast cancer”. Matt grabbed for my hand and squeezed it. I didn’t cry, I didn’t really feel anything. I just needed to know more. How bad is it and what the hell are we going to do about it?
I was told that they thought I had caught the cancer early and that was a very good thing. It was small, around 1.2cm, but it was grade 3 and aggressive. For this reason, they wanted me to have my lymph nodes biopsied and I also needed to have a mammogram and an MRI to determine if it had spread. They told me it was triple negative and, as I was so young, I would need to have a blood test to check if I had inherited breast cancer due to a genetic mutation. They said I would need to have 6 cycles of a chemotherapy regime called FEC-T as soon as possible, to ensure that the treatment was able to attack any cells that had spread through my body. Then I would need surgery and then maybe more chemotherapy and most likely radiotherapy.
I left the appointment and I rang my mum straight away. Still no tears. I text my friends and family and I thought I felt calm but, on reflection, I was completely numb. My family rallied around me that evening and whilst they tried to hide their tears from me, I noticed their swollen eyes. Their tears scared me. Why were they crying? Did they think they were going to lose me? I did eventually cry. The fear gradually emerged, and I was terrified. But optimism tried to fight the fear. They had told me I had an excellent chance of being cured; that’s what I chose to focus on.
I had the scans, the biopsies, the blood tests and then I waited for my next appointments. A meeting with my oncologist. He is a lovely man, who smiles with his eyes and puts me at ease. When we met, he told me the scans did not show any evidence that the cancer had spread, and we talked through my chemotherapy regime and the potential side effects. Gulp.
I then had another appointment with another surgeon who told me there were indeed cancerous cells in the lymph node they biopsied. She told me it didn’t really change much about my treatment; the plan was always to do a full lymph node clearance at surgery anyway. It wasn’t a huge surprise, with an aggressive breast cancer so near my armpit, I think we all expected it. They told me we were still dealing with primary breast cancer, but they couldn’t determine the stage for certain. They said they expected it to be a lower stage, due to the size of the lump, but that we wouldn’t really know the true pathology until surgery. My mind started to explore the possibility that it could be worse than I initially thought. What if the scans missed something? What if it goes and then comes back? What if treatment doesn’t work? My breast care nurse was really helpful. She took the time to reassure me and I was able to challenge many of the dark thoughts that were trying to take over my mind. Side note: I still get these thoughts a lot and they are tough ones to manage. I even had a little cry about this today. There are just so many unknowns. But I think it is totally normal to find this hard.
My final bit of news was about the genetics test. My appointment was cancelled due to Covid-19 but I received a phone call instead. I wasn’t particularly bothered about the cancellation because I had already come to terms with the results being positive. My family history and young age pretty much confirmed it. Turns out I was wrong. I don’t have the genes they look for and this means they don’t know why I got cancer so young. Whilst that’s a little frustrating, its good news for a variety of reasons and my tears showed me how relieved I was.
Once all the scans were done it was time to start treatment. But before, we snuck in some swift fertility preservation. Even though grade 3 breast cancer is aggressive, my medical team felt we had the time to harvest my eggs before chemotherapy wreaked havoc on my fertility. Two weeks of pumping hormones into my body (Matt became an injection pro), endless scans and, finally, a short procedure to collect my eggs. After Matt had an awkward moment in a private room, my eggs were fertilized and after 5 days they were frozen. We now have little embryos waiting for us, if we ever need them. Kind of cute, kind of overwhelming.
I started chemotherapy the next week and started blogging from the beginning, so the rest of the story is in the previous posts. I’ve now had the 3 rounds of FEC, 1 round of the ‘T’ and have 2 left. I haven’t blogged about my experience of ‘T’ yet. But in short, its manageable. I mean I feel like I’ve been hit by a car (joint and muscular pain is real) but its not like I haven’t experienced that before (another part of my story – I got knocked down by a car on my first date with Matt lol). So, you know, I’ve got this.
So, its out there. My current reality. My ongoing story. And in all honesty, I feel a huge sense of relief for just having it there. In writing. For you to see.
And, of course, in my true style, I feel drawn to reflect on some of the things I’ve learned from this. Sitting with the pain. Allowing myself to experience that low mood, really being in there and exploring it, helped me to get to a place of understanding that I would have otherwise suppressed. I think we often want to push away painful thoughts and feelings because they feel horrible and we tell ourselves the best way to feel is positive. But is it always? Sometimes rubbish feelings need to be worked through. I mean, we have them for a reason, don’t we? Sometimes we just need the time to figure out what the reason is.
Feeling low helped me to realise that I was doing something unhelpful. That I have been for a while. Sticking to a pre-planned life story so inflexibly was tearing me down. We need the freedom to write our life stories in the moment. To be inspired by new experiences, new people, good or bad, and to change the direction of the story accordingly. There will be plot twists. There will be times where there’s writers block and things stand still. That’s ok.
And inevitably, the story will always come to an end. And with that, I am now able to truly acknowledge the fragility of life. Before having cancer, I didn’t think about dying. Why would I do that to myself? If it came up, I would briefly explore the idea that I would probably live until I am old and grey. That I will reach an age where I feel “ready” to leave the world behind. A peaceful passing, that’s years and years away. Something that doesn’t need to be considered. Something that can be forgotten about for now. I lived each day as if I had all the days left in the world. I moaned about so many irrelevant things. I stressed about so many irrelevant things.
When you have cancer, the brutality of your own mortality smacks you in the face. It almost takes your breath away. You think about things you’ve never allowed yourself to think about before. You worry that things are going to get worse. Whilst you try to stay positive, there are moments of worry where you predict hearing the words, ‘its got worse and its terminal’. And it feels really horrible. At times, I feel sorry for myself in being faced with this when I am so young, like its not fair. You know, the whole ‘what did I do to deserve this’? But I also realise that this has been my reality all along. Its been our reality all along. I feel cautious as I type this because it sounds pretty brutal, but aren’t we all living under a terminal diagnosis? Death is an inevitable part of living and we don’t get to know the expiry date. We just hide away from that. Deep, yes, but bear with me.
My cancer, as far as I am aware right now, does not mean I am going to die soon. But it has opened my eyes to the fragility of life. Its hard to think about. Really scary. But you work through it. You just have to. And you start to notice new things, things you didn’t notice before. New perspectives. The other day, I genuinely felt gratitude for sitting in my kitchen and hearing a clock tick. Just acknowledging feeling safe and cosy and experiencing the beauty of sound. That was a little weird and maybe a bit too fluffy in direction of gratitude, but the sense of appreciation I feel for living is different now.
I guess what I’m trying to say is that its so easy to get caught up in the insignificant stresses of life and lose sight of the bigger picture. The bigger picture being that we get the chance to live and to experience and to feel. Its so easy to forget, in this big old world that we live in, that our time is so precious. We constantly compare ourselves to how society tell us we should be. We determine the success of our story based on the success of others. We critique our own stories before they’re even finished. Having cancer reminded me to truly appreciate the process of writing the story. To embrace the highs and learn from the lows. To allow the pain and the ambiguity but to aim to fill the pages with passion and wholesome, meaningful experiences. It doesn’t have to be the big things, like travelling the world, it can be as small as appreciating the smell of rain (this also happened) or the connection of a conversation. Whether my life ends up as a thick novel or a short story, all I hope is that its one hell of a book. As the author, I need to embrace the uncertainty. I think we all do. That’s the beauty in the c-weed.
