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Five: ramblings about you.

If I went to a fortune teller at the end of last year and they revealed their prediction for 2020, I would ask for my money back and either laugh it off as bullshit over a glass of wine or panic-write a review about the risk of psychological harm from such a terror-filled psychic reading. I would probably do the former, ruling out the possibility that so much could happen in such a short amount of time. But I imagine the anxiety would sometimes creep in and, during those times, I would think to myself that there is absolutely no way we would cope with it all. I would predict that Matt and I would fall apart. Break down. Crumble.


There are things I haven’t shared on this blog. I’m not sure why, I guess it was intended to be about my experience of cancer and I’ve restricted the content to that. But that’s not reality. Things happen outside of cancer, for all those who face it. Whilst the diagnosis and treatment take up a lot of my head space, my life goes on. Day by day, week by week, month by month, things are happening outside of my health. I still love people and they love me back. I still grow and develop as a person. I still move through the typical milestones I had planned for my adulthood, like buying a house. All these wonderful things. But the inevitable tragedies of life happen too, and we’ve had more than our fair share of heartache thrown at us this year. If I had been to the fortune teller and written off their reading, I would owe them an apology.


Life, for everyone, this year has involved a great deal of loss. Loss of freedom, work, financial security, holidays, physical social connection, ordinary routines. Alone, that is a lot to manage. We cope by telling ourselves it’s not permanent. We fantasise about the future where we get all these things back. Those fantasies pull us through. But there are some things you can’t get back. Since being diagnosed at the beginning of March, we’ve faced the painful loss of my wonderful Gramps, Jack, and Matt’s incredible Mum, Jeanette. It’s been, and still is, really tough. Coronavirus has constricted our freedom to grieve, wrapping around the process like the vines of Devil’s Snare (yes, this is a Harry Potter reference). Complications with visiting hospitals, restricted funerals, not being able to be around friends and family. Its suffocating.


We’ve felt anger. Frustration. A sense of things being unjust. We watched people break the rules for what looks like no valid reason other than wanting to and we felt like screaming (this was written before the new lockdown rules). We were restricted in saying our final goodbyes, yet we saw people saying hello to people they will see again. Hugging them. I wasn’t able to give Matt a hug for two weeks after his mum passed because he had to leave our bubble of safety and I have to shield. I’ve not been able to be around him during a time where he needs me more than ever. That has felt impossible. Two metres has never felt so far, and I’ve never felt so imprisoned by something I can’t even see. For me, I’ve also felt afraid because I’ve been reminded that we are not immortal, and my body is fighting something that is too often fatal whilst trying to steer clear from a virus that can also be fatal.


And, of course, the rainbow I described in my last post has succumbed to the power of Devil’s Snare. There are angry vines. Frustrated vines. Distraught vines. Terrified vines. There are so many different thoughts and feelings throttling my mind like snake-like tendrils. Tightly binding. Blocking the colour. My initial response was to fight them. To find a way to squeeze my way out of their trap. But fighting has left me feeling drained. Exhausted at a time where I really cannot afford to exhaust myself.


But as J.K. describes, the harder you fight against Devil’s Snare, the tighter the grip becomes, and it swallows you up. So, whilst I think the feelings I describe are a valid and natural response to a heart-breaking situation, I must find ways to distance from them. I have to let go of the fight to resolve the feelings, the fight to free myself from the trap. Because fighting only makes the grip stronger. I have to find ways to make sure I’m not swallowed up by the vines. Because I will not be defeated.


Following the advice of the very wise Hermione Granger, I think I know what I need to do. I know that Devil’s Snare prefers darkness, and I know that light and warmth makes the vines of Devil’s Snare wilt. Unfortunately, I don’t have the power to magic light, despite owning a wand (yes sad but I LOVE HARRY POTTER). So, instead of focusing my attention on fighting the vines, I need to focus my attention on finding the light.


How do you find light when everything is dark? I’ve spoken those words aloud to myself over and over, desperately trying to find the answer. How do you find light when everything is dark? When everything is dark. Everything. And eventually, I noticed something. My mind focused in on the word ‘everything’ and I realised the answer was patiently waiting for me in the question. Everything means everything. The lot. The whole shebang. And I can’t, for one second, claim that everything in my life is dark.


I’ve noticed a pattern to my blogs. I start with something negative, I pick it apart and explore it in the middle and I tie it all together with a positive. Like carefully wrapping a pretty bow around an ugly gift. I’ve come to realise that that is my way of coping and sometimes I want to apologise for it. People tell me I’m strong because of it, and mostly I feel strong because of it, but sometimes I wonder if I do it because its too painful to focus on the negatives. Does that make me strong or does that make me weak? Sometimes it makes me feel like a fraud.


Whilst searching for the light, for the positives in my life, I’ve been dancing around this inner conflict. Strong or weak? Brave or a coward? But what is strength and what is weakness? When you really think about it, strength and weakness are just words. Adjectives. Categories created by humans to describe coping. I strive to fit into the strong category because society tells me that’s the better one to be in. Most of the time I feel strong and I feel proud. But on the occasions I feel weak, I feel ashamed. I’m done with that. I’m coping how I’m coping, and it is what it is. Whether my coping mechanisms are fuelled by strength or weakness or something entirely different, all that matters is I’m coping in my own way. I haven’t fallen apart, I haven’t broken down, I haven’t crumbled. Sometimes I feel strong, sometimes I feel weak, sometimes I feel in between, sometimes I feel nothing at all and sometimes I feel everything at once. But I’m still going.


Conflict resolved, for now, I have been able to freely think about the light. The light that wilts the trap of painful thoughts and feelings. And I’ve discovered that for me, the light is you.


It’s Matt. My best friend. My absolute rock. My hairdresser (lol). The person who relentlessly supports me, despite facing the most difficult thing he’s ever had to face. The person I so desperately want a future with. The person I’m building a home with. Our home. He makes me feel special and powerful. He also feeds me remarkably well (dream). From amazing holidays to lounging on the sofa under a blanket, everything with Matt is light. Fluorescent. Apart from when he doesn’t clean the bathroom. Or farts.


It’s my family. My mum, for the sacrifices she’s made to support me. The weeks she spent on her own to make sure I had somewhere safe to live. For stroking me to sleep when I’ve been feeling sad and unwell. For giving me the space to feel independent but being there when I need her. Her love is blinding. Thank God for sunglasses. My siblings, for understanding. For caring so deeply. For being my soul mates. Their partners, for expanding our beautiful family and supporting us all. My nephews and niece, for making me smile every time I think of them. My dad, for introducing me to metaphors (he uses a boxing metaphor to describe my cancer journey and, I don’t know if you noticed, I bloody love a metaphor). My nanna, for always asking how I am despite facing the heartbreak of grief and for showing me how to be resilient. My gramps, for a lifetime of love and for teaching me endless precious lessons, including that dying can be peaceful. My wider family, for their unconditional love and their pride in me, helping me to feel proud of myself. Matt’s family, for making me see that I have two families now. Matt’s mum, Jeanette, for inspiring me to go through the experience of breast cancer with grace, to have fun along the way and to live my life to the absolute full. She will inspire me forever.


It’s my friends. The ones who are more like family than friends. The ones who I’ve known since childhood and the ones I’ve met in recent years. I vent and they listen, they try to understand, and they show me they care. Through their words and their actions. From zooms, to messaging, to virtual mediations, to sending me thoughtful cards and gifts, to popping by to safely say hello during their walks, to doing my shopping, to raising money for my wig, to training for a half marathon and baking delicious cakes to raise money for CoppaFeel!, a charity I care so much about. A charity they also care so much about. They make me feel so loved.


It’s the friends and family of my friends and family, who support them to support me. It’s my colleagues. They make me feel valued. They check in. They send me their well wishes and they make me feel so lucky to be going back to a job that I love. It’s the people I don’t know very well, who send me kind messages of support. It’s the people I don’t know at all, who are following my journey and supporting me despite having never met me. It’s you, for reading my blog. For reading my rambles about cancer, my mind, my world.


And finally, as uncomfortable as I feel saying this, I owe it to myself to acknowledge that it’s also me. Slight tangent ahead but bear with me. Recently, I did a guided meditation and I noticed a whirlwind of critical thoughts about myself emerging as I tried to focus on a body scan. I’m not supportive enough. I’m focusing too much on myself. I’m not there for the people around me. I’m selfish. I tried to let the thoughts go and redirect my attention, but they were relentless. When I was directed to focus my attention on my heart, something a bit weird happened. I imagined a tiny playdough (yep) version of myself hugging my heart. Interpretation galore. In short, I think it was a message from me to me to have some more self-compassion. To forgive myself for not feeling like I can balance everything at once. To be kind to myself and acknowledge that I’m trying my best to manage and that might mean that, at the moment, I do have to focus more on me and Matt than those around me. And since trying to practice more self-compassion, I’ve allowed myself to feel proud of myself. To acknowledge that the energy I’ve put into learning about the human mind is helping me. To respect myself for trying so hard to understand myself and to cope. I think I’m doing ok. And the critical thoughts have less of an impact.


We are the light. You and me, together, as a team. A collective. A support system. We make the darkness fade and the vines that trap my mind wilt. The light is also dogs. Plants. Travel. Salt and vinegar chipsticks and nobbly bobbly ice creams (yes, I’m basic). But its mostly us.


It’s funny, I’ve never truly explored the power of social support for myself. Part of my thesis for my doctorate involves a systematic review (don’t lose interest this bit is short). The process of a systematic review is long and slightly torturous but put simply it involves an evaluation of the existing research on a particular topic. My topic is the impact of social support on therapeutic outcomes. I haven’t finished so can’t conclude anything with any confidence, but the sense I get so far is that the research shows that having good social support makes psychological therapy more beneficial. Social support compliments coping. Despite spending months exploring this topic, not once did I apply it to myself. Lived experience has taught me something my doctorate couldn’t.


I think what I’m trying to say is that this experience has opened my eyes to the value of my support system. The power that a good support system holds. I am extremely grateful for the support around me. But I’ve been thinking about what this experience would be like without it. What it would be like for anyone, going through anything tough, to go it alone. It makes me feel anxious and it makes me want to shout about how important it is. The power of a message. A check in. A question. A “hello, how are you doing?”


The world is tough for so many people right now for so many reasons. Sometimes we don’t feel like we have the capacity to support others and I think that is definitely ok, we have to look after ourselves. But at the times we do have the capacity, I’m asking you to think about doing something with it. Big or small. Whether you feel like its meaningful or not meaningful. Whether you feel like you will get something back or not. Sometimes I feel too full to reply to messages. Sometimes I don’t want to speak to people. But I know that when I’m ready, you will be there. Waiting. From someone who’s been struggling with what life has thrown at them, please hear that for me, you have helped me to keep going.


This experience has led me to appreciate the power of us. The importance of nurturing your support systems and putting in the work to establish good connections. The importance of advocating for people to have an increase sense of “us” in their lives. That’s the beauty in the c-weed.


P.S. A couple of pleas. Firstly, cancer referrals are down since coronavirus invaded our lives and this is really worrying. Don’t forget to check your body and contact your doctor if you are worried. It could literally save your life. Secondly, please stick to the social distancing rules. Just remember the sacrifices people have made. Sacrifices that will never leave them. Be a good person. Flexibility is inevitable but be safe. Be flexible if you need to, not because you want to. Don’t be a dick. Thank you 😊

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