One in Three and Me

Reflections on cancer by Ella Sinden

Photograph: Marcus Woodbridge, Unsplash.

It was after she sailed with ‘A Chacun Son Cap’ (a French charity for children with cancer and leukaemia) in 2000 that Dame Ellen MacArthur was inspired to set up her own charity to support children living with cancer. Initially the Ellen MacArthur Cancer Trust was set up to support young people aged 8–18, but in 2010 it was extended to support young people aged 18–24 for the first time. The team at the Ellen MacArthur Cancer Trust understand that dealing with cancer can have a huge impact on a young person’s mental wellbeing. Through sailing and outdoor adventure they aim to help young people build confidence by making friends with others who have had similar experiences, to rediscover their independence, to begin to realise what they are capable of again and crucially to stop feeling like the ‘only one’. To find out more about their incredible work visit their website.

Believe in a brighter future (ellenmacarthurcancertrust.org)

When I was first asked to write this, I was thinking about a witty, cynical piece that would change the world’s perspective of the big C word, something I would be endlessly praised for and boast my success to all future interviewers. But that’s not what it is. I am witty but I’m also stubborn and impatient and I tell myself I’m unaffected when I most likely am. Athough this is not my sob story, it is a story, and I want to tell it to you, for my sake and possibly yours. Take notes.

Personally, I struggled to stay in the world of cancer, and I felt selfish when I didn’t run a marathon in budgie smugglers in the snow, or donate my time or my money or my left lung to anyone, those people will forever have my undying respect. But then I was asked to do this. I’m not a heroic survivor of cancer, and I struggled with the universal you’re so brave language initiated by any mention of a drip, but, if one person can relate to this, that’s enough - I will tell myself I helped you. Let’s cover the basics - in May 2020 I was diagnosed with stage 1 ½ ovarian cancer (they never really confirmed so I took a guess), and a tumour was removed along with my right ovary in the same month. But this cancer had a strong growth mindset and so in July that same year I started a 4 cycle chemotherapy programme, and I was excited. People forget to mention that part, the buzz of trying something terrifying - so maybe it’s just me. But there is something about going through a rare, life altering event that triggers the little voice in your head to say “I wonder how people will react when I tell them” - awful no? I felt awful, but incredibly human, to say the least. I wanted a ‘The fault in our stars moment’, where I’d be forever changed by my experience, maybe meet an angsty teen boy and bond over our shared trauma - I’d like to think I was very disillusioned by Hollywood’s fantasification of it all. It was hard, very hard, and painful, and debilitating, but, even if only slightly, also uplifting. I label myself an introvert, because then it means I can rewatch Game of Thrones for the 7th time alone in my room and blame it on my nature, but in reality I don’t think anyone is entirely intro or extroverted. When you go through something like this you start to recognise yourself, what you need and what you should allow yourself and so now I want to highlight my first piece of advice to my inpatient crew - be selfish. Be as ungrateful and bitter and short tempered as you can possibly manage, if you so wish it. You need to allow yourself to cope, you have a reason, use it. Develop the worst diet of your life, binge all 10 seasons of friends even if it makes you and everyone else cringe, do not make a move in over 12 hours and have someone attend to the remote. Equally, get up in the morning, stretch, open a window, read, write, scream the lyrics to some depressing generic, repetitive song that resonates with your pain. It is not anyone’s place but yours to enforce or ignore productivity, or define what it is.

Image courtesy of Martin Allen Photography

People disassociate from cancer, it's easy, I would, and I did. No one ever thinks of themselves as part of the 1 in 3 statistic, and no one ever prepares for being the 1. But no one in the history of anyone ever dreamt that the entire world would be ill with you, and it definitely turned things up a notch. Kicking off the new decade with a global pandemic impacted everything - I don’t need to tell you, and for cancer patients it put the sole in isolation. On the one hand, everyone is inside, feeling just as depressed as you are and establishing newfound mental illnesses, which I suppose meant the world had actually stopped spinning without me, but personally I needed people, I needed my family, and when you’re permitted one visitation per day and the occasional unnerving eye contact with a masked stranger as they change your

fluids, things become surreal, and yet I’m only now beginning to understand just how surreal it was. Being a teenager with cancer sucks, you’re old enough to remember every agonising moment and young enough that your brain is still developing, so you have no idea what’s going on or who you are or why you wept to ‘soldier comes home and reunites with dog’ on TikTok at 3am - or why you were even up at 3am. It’s a confusing time, and when someone chucks a rare and aggressive breed of cancer your way, your initial response is a slightly delayed and sleepdeprived …huh?? It’s not supposed to happen, and the last thing I ever expected was to be the 1 in 3. I remember being in my back garden in the dark after my first inpatient cycle, kicking a deflated football into the wall and screaming ‘why me’ - maybe a little dramatic on reflection. But for the first time, I had absolutely no control over what was happening to me, and in my narcissist angsting ways, I was astounded. I wasn’t about to refuse the lifesaving treatment being provided for me - “er apologies, but not for me thanks”. When I look back I think this is why I struggled with “you're so brave” as a statement. I was far from brave, I was just…being. Whilst everything happened around me, I was coping, or rather, being dragged kicking and screaming back to the teenage ward in Bristol every 3 weeks.

But I think, and give me a shout if you relate, that being 2 years into remission, everything’s hitting me now, like someone’s made a bat out of suppressed anger and stress and is just beating me over the head with it. Somehow this seems to be the hardest part for me, and it's funny because everyone else seemed to be aware of this stage except me, and when I’m tired or anxious or fizzy, like someone’s shaken me and I’m just bubbling, it's ah yes - peak time to be readdressing your hospitalisation 20 months ago - pardon?? When was this decided? Am I hitting a deadline here? It feels incredibly

unfair, that I now have to think about it all and process - but it's true. There is a time in remission when it comes back, in vague, subtle ways, or all at once - like bursts of nausea or anxiety or feeling fizzy, and this is important to acknowledge, but never feel any pressure to address, this is your brain doing its thing. I went on the Ellen McArthur Cancer Trust sailing trip this summer (something I wholly recommend), and I remember asking someone about pressure. About the fact that I need to feel experienced now, how my perspective needs to have changed for the better and now every thought should be brilliantly analysed and understood and I should just; know myself. Inside and out, all the time. Being a control freak and perfectionist, this came from me, but it also came from my experience, and the fact that I needed to be in control now because I hadn’t been. There is no pressure to be different or changed, or suddenly understand the meaning of life. I suppose this is one drawn out way of saying ‘go with the flow’. So this is a brief summary, just so I can say that I’ve processed it. I feel like I’ve covered everything, but I know that I’ve only just about made a dent, and I don’t like that I’ll have to continue dealing with these emotions, or that I have to watch people battling their curiosity and look like they’re being strangled when I tell them what I went through. But I’m managing, and for people who are in remission, it’s a process, a process that waits for no one and continues long after treatment ends. But think of it like this, you are now immediately infinitely more interesting than the average person, and hopefully now, you are suddenly capable of a whole lot more.

...like someone’s made a bat out of suppressed anger and stress...

Image courtesy of Ella Sinden

Germ cell tumours

Germ cell tumours only develop in germ cells, which are the cells in the body that develop into sperm and eggs. Typically germ cell tumours develop in the ovary or testicles as this is where our bodies have the most germ. Sometimes germ cell tumours can develop elsewhere in the body but these are very rare.

The main treatments for germ cell tumours are surgery and chemotherapy. Treatment will depend on the type of germ cell tumour and where it is in the body.