No Kids.

This is one of the most difficult entries to write. I’ve had it saved on my computer for a while but I get too scared to post.

This may not affect everyone reading this, cancer or no cancer, but I believe an ability to empathize with the issue is universal. For those reading this who are close to me, I hope that this won’t affect how you see me too much.

I want this post to be unapologetic. I’m not going to belittle the problem, or talk about relativity or staying positive. I am positive and optimistic but if you are someone who has had cancer/is going through cancer and it affects your fertility, particularly if you are a woman….this shit sucks. It just sucks.

It is up to you how you handle it, but I think you have to grieve that loss…but not forever. The details are not of great importance, and whilst it is a very personal and private pain I feel it is important to share it here. I personally believe that everyone is entitled to whatever reaction they feel like if this happens to them. If you want to scream and shout, you should do it. If you want to cry, you should do it. If you want to construct a collage, it may be a little ‘off-centre’, but you should do it.

I found out early on in my malignancy that I wasn’t going to be able to have children, at least not naturally. Having had both ovaries removed has a variety of irritating side effects, some physical and some psychological. Whilst my parents and me might have hoped to freeze my eggs, that possibility did not present itself.

I’m going to be frankly honest here and I’m sorry if you are reading and this doesn’t bring you comfort. It has been 7 years and it still hurts, a lot, and I wish it didn’t.

It hurts when I play with my friend’s amazing daughter. It hurts when I see photos of my boss’s kid on his wall. Sometimes it comes from a doctor asking me ‘How I’m going to tell my boyfriend…surely that’s a big deal?’ or simply exclaiming ‘No ovaries…No kids then’. It’s a lighting bolt of sadness, the only sadness that has stayed with me after cancer.

It makes me feel less of a woman, that there exists a fundamental flaw. It feels like a failure. That people can tell.

My biggest fear – and this is one I’ve shared with few – is that no one will marry or love me for that reason. That’s a hard one to admit. We may not live in a medieval age, where women have but one purpose, but still I think of some future partner’s parents…. who wanted their own grandchildren. Who am I to deprive them of that? Why shouldn’t they have what comes naturally to so many other people?

It feels empty and yet crushing. It feels like the one thing I was supposed to be able to just…do. I think of the names I had thought about at 12 or 14. That he or she might look like me, or even act like me. That whomever I loved, he or she would be this bizarre exciting combo of the two of us. That hurts.

There are times when it doesn’t hurt as much.

I try to stay positive and think of the millions of opportunities to become a parent another way. None of which should be lesser, says my rational mind. My friend, with Two beautiful daughters now, told me “it doesn’t matter where they came from, but that you are the one they need”. Adoption, surrogacy…. future cloning options…it is all possible and I’m sure as fulfilling as natural conception.

My most comforting memory is when I was watching Modern Family, feeling pretty bumtown. My friend pointed out what Mitch and Cam said about Lily (their adopted daughter for those who don’t watch)

“She’s not ours, but we made her.”

 

It is also allowed to hurt, and it is a very private hurt that I have shared…in the hopes that those reading this may understand and be comforted in the idea that someone else is going through the same.

We’ll see what happens. I hold out hope. 

Absurd Is The Word.

It wasn’t that bad. I coped. It was okay. I got through.

How? People look at me with incredulity when I say this. How can I look back, even to the recent past and say that? In fact, what gives me the right to belittle or deride what to many, in a similar position, is the worst period of their lives? A painful experience for their friends and families, as it was for mine, for some, the final memories of their loved ones. People are generally not this harsh or blunt with their questions to me. Most people let me say what I like on this subject. But still, these words are my knee-jerk reaction. They are very honest, if not very nuanced. The answer to how, is comedy.

When I starting writing about cancer, and intersex, and a whole host of goodies I intend to put forth in the next few months, I really wanted to write my story, honestly and brutally, in the hopes they would comfort or ease the anxiety of some. I have searched and searched my brain for anything credible to share beyond my own narrow experiences. Maybe some key thing that got to me to where I am now. There are few tangible qualifications that I possess to help. I’m certainly no healer. But I can maybe make you laugh (shit, pressure). The most I have ever laughed in my life, to this day, is while I had cancer.

I woke up from surgery, sliced in half, jacked up on morphine, unable to move my legs. Julia sat by my bed and we watched ‘Zoolander’. We laughed and laughed at my reactions to the morphine, my sliding in and out of consciousness. That experience brought a new, realer meaning to the phrase ‘side-splitting’. I laughed about the prospect of dating whilst braced, bald, and bespectacled with friends. Me and my doctors snorted at my taking Lorazepam, “Blueies bring you down”. We laughed about my dad’s buying of a dozen Krispy Kremes for every visit. Me and my mum were bent over at the adverts in SAGA magazine, stuck in a waiting room for results and more bloods. We laughed and made fun of the friends that let us down. The very best of comedy, I believe, leaps out of you like anger. When moments are so absurd that you make fun of them. You bully them.

Comedy is a pain-reliever. It relieves, it doesn’t distract, I believe. Whether it is on the subject most pressing, or watched, it shifts perspective. I watched back episodes of SNL, Monty Python, and Have I Got News For You. The more I laughed at the goings on of the rest of the world, the more connected I felt to it. I got to grips with the sarcasm of Seth Cohen and developed a taste for funny men (watch out). I developed an obsession with the Daily Show. Scrubs brought to life the kind of weirdness I thought only Julia and me were capable of producing (bittersweet that).

Comedy is a victory. When the world has played a cosmic joke on you, what better way to say ‘fuck you’ than to laugh? There is no greater bond or secret than the black humor I’ve shared with those closest to me. We joke about intersex, my bareness, my tumor, my lung tumors, and my baldhead, as though we are joking about boys, and school, and parents. It’s the most genuine exchange we could have when we both afraid and sad but incapable of properly saying so. We used to joke about punching me in the “Novaries”. I’ve never felt closer or more accepted by someone than when we can share in black humor.

This is not to say, and here is the paradox, that these things are not serious. How can anyone hope to oscillate between Mike Myers and Mike Myers (Austin Powers and Axe Murderer) at a moments notice? We would certainly all rather laugh than cry, but cry we must. This disease is scary, real, life threatening, and crucially, it is isolating. But what better way to feel less alone, than to laugh with someone? My veins are a complete joke, they suck, and I’ve had 17 tries to put a line in. I cried with pain and frustration, and then I laughed at how absurd the situation was, and started to sing at the top of my lungs. Usually RENT. I’ve said a thousand times how paltry words are. Jokes aren’t though. Jokes are powerful. They express so much more cloaked in irony than any sincere sentiment can. No one can join you in your illness, but they can be in on a joke. And that is much better.

Last year, I met an incredible friend called Meg. I sat next to her, by chance, at our orientation lecture. We spent the rest of the year becoming great friends. She is one of the most talented writers and probing minds I have ever met, and I’ve been lucky to meet quite a few. She has the same passion, backed by insight and taste, for film and comedy that I do. A couple of times, we talked about comedy. We talked at length about what was funny, but on one walk home we got to the bones of why both of us had spent so much time devoted to the masters of comedy and improv and trying to be funny, dreaming about it in my case. We leapt around and around, making a million jokes, repeating one liners from our favourite shows, talking about the times when comedy had helped us the most. All we could agree on was that comedy is important. So important.

As Benito Mussolini said….oh wait, no. Definitely, no. Wait….’Google quotes about Comedy’. Clint Eastwood….Seriously. Ah. Google, you bastard. Never mind. Two quotes here:

Eric Idle:

“Life doesn’t make any sense, and we all pretend it does. Comedy’s job is to point out that it doesn’t make sense, and that it doesn’t make much difference anyway.”

Mark Twain:

“The human race has one really effective weapon, and that is laughter.” 

What Isn't Chemo Makes You Stronger.

This starts off rough but please bear with it. It gets better, promise.

The inverse of how I describe chemotherapy.

Whenever I come across a task that is challenging I say “Suz, you did chemo. You can do this”. To which my subconscious replies “Yeah Suz, but you are terrible at math. This does not apply. But thanks for the pep talk”.

If you read this, about to commence what will be a challenging time (to put it lightly) in your life I mean this not to scare you, or to put you off. I write this both for those going through it to show a loved one if they can’t understand what it feels like, or to read and feel some relief that someone described the effects of chemo of something other than “fatigue” or “nausea”. Paltry. It does suck. There’s no getting around that. Sorry, what a bitch.

Chemo was cumulatively crap and somewhat of a blur. Every cycle, every day came without fail, and without fail it felt more punishing than the day before. Somehow this was a blessing. The first few days, where nothing happened to me, it took away the horrifying expectations I had previously held.

The top of my head was screwed off and they poured out my remains. Then they head me with a bus. Walking hurts. Stairs are a joke. To double the impact, throughout chemotherapy, I never let go of the idea that I deserved it. I was cocky. I day-dreamed that one time in English about what it would be like to go through chemo. This is my punishment.

There is something hollow in that kind of suffering. I don’t mean this self-pitying, but because I’ve seen and heard about the same thing from other people having chemo and radiotherapy and surgeries and everything else. Both grandmothers. Friends. Looking up at my mum, who can’t stop it. The anti-emetics don’t work, they never will. It all has to come up. Everything, and then some.

Etoposide was my least favourite. Though apparently less dangerous than bleomycin and cisplatin, I could taste it at the back of my throat for the hours it was pumped in. Green Tea was the only thing that made it dissipate days after. Sean taught me that the gag reflex can be controlled by rubbing the little nubbin between your fore-finger and thumb. I don’t know if that’s true but I still do it today. No complaints about needles though. You have 3, 5, 10, 20….no big deal. Even the really big ones. (It’s really time I got a tattoo).

A nurse came in one day to ask if we could start Day 5 of a chemo cycle earlier, at 6am. I would only finish the fourth day at 11pm that night, but I agreed. They needed the room for another patient, fair enough.

It wasn’t two hours before I was doubled over the bed choking and wrenching up anything I could find. Tears streaming down my face. Tinnitus blaring. Nurses injecting me, trying to make the vomiting stop, while I concentrated on the numerous grey cardboard buckets passed under me. Even with a stomach ten times emptied, I spewed bile, and begin to sip Oasis just to have something to bring up again. Each time being throttled and squeezed from stomach to throat by an invisible hand. My face stretched and red. Chemo is a mother-fucking asshole bitch.

All you can do is console yourself that the harder it hurts, the better it must be working. Even if that isn’t true. This is because you can’t console yourself that it will end soon because you never know. Sometime, after hours of pain, it just stops.

I used to tell myself that I wasn’t pathetic or weak. People told me that I was brave and strong, so it had to be true, but I felt myself slipping down. My eyes were yellow and my bald head itched against the pillows. Every time I entered the hospital I would unconsciously vomit and faint from the fear. This is why you tend not to have chemo at home. My fingers were numb and everything hurt. Doctors kept saying ‘cure’ but I didn’t believe them. They’d said I wouldn’t have to have chemo not that long ago and that Edna hadn’t spread. If it can go wrong, it will go wrong.

I realised quickly that I had a bad case of ‘Chemo Brain’. I had planned on reading every book possible and doing all of my GCSEs. But I couldn’t finish a paragraph of Harry Potter, and the thought of someone reading to me was too depressing.

One day in the chemo lounge, I was sat next to a woman in her thirties having treatment with her mother next to her. The mother was feeding her daughter whilst she groaned. I was two cycles in and looked at her, hoping for comradery or maybe a sign that this was going to get better. Like in the movies. Sadly, the woman had clearly had enough, which is so fair and understandable. The life had literally been sucked out of her, and there wasn’t much left to give to someone new.

Fair enough, I had already started taking out my bad sad moods out on my sister and was struggling to find the energy to keep up with any unnecessary conversations. I wasn’t mad at her, I just had nothing left to put out. And her being wonderful and alive reminded me that I was not. That much I was not in control of but I decided then that no matter how scared or sad I felt that I would not let myself sink into the hole of depression. This was going to go on for so much longer and if I could see that there was no consolation or silver lining, besides my loved ones, to keep me going.

You have to create silver linings. It was up to me not to sink down. If I sank into depression, if I spiralled down, there was nothing to pull me out. I pictured the sinkhole in beginning of Star Wars: Return of the Jedi.

Another day, weeks later. I lay on my side staring at my cannula in my hand when a nurse came in and asked if I would speak to another patient who was about to have the same surgery I had to remove his tumour. Similar cancer. I expected a kid that I could hug or ‘pity-pat’. Limping into the room on the ward, holding my chemo-pumpy-machine, I couldn’t believe I was seeing a man in his forties. Married. With kids, I don’t know. He was looking at me, all of fifteen, for reassurance. His eyes looked like mine a couple months ago, asking me to tell him that it’s going to be okay. Cancer can even out age-difference that way. To promise him that. I was honest with him, that it is pretty rough but joked about the morphine afterwards. I couldn’t make it better but, that wasn’t my job. I could show that I understood.

Even when chemotherapy sucks the life out of you. There are periods, sometimes hours, sometimes half an hour, where you get some energy back, and you don’t feel so sick. You have some life to spare, or spend on people. Valentine’s Day rolled around and I found myself deep into another round of chemo. My friends are beautiful confident girls, who had many a dude chasing after them. I fully expected to watch ‘The Holiday’, cry-laugh, and eat a trough of plain bagels (the only thing that no longer made me nauseous). But they all came up and sat with me all day. They brought Valentine’s cards (more than I had ever received with hair). We talked like normal people about normal, seemingly mundane, problems. Mostly boys and shitty haircuts. I thought ‘this is all I want after that fucking poison, this is perfect’.

To bastardize a Churchill quote: “When you’re going through hell, talk about your friend’s terrible haircut/boyfriend/test score/allergy”. Or something to that.

Sometimes I would think to the hours previous, gutted and prodded over a cardboard bucket, and think how wonderful it is to have a conversation about some dude’s text with the mixed signals. Chemo is different for a lot of people, mine was non-stop, short, and nasty. Some have years of chemo. Some people don’t have symptoms like the above. Some do, and worse. I write this because it can bring you down no matter what cocktail you’ve got, and you can’t make the chemo better. You can work around it, food and drink and yoga. But you can’t stop it.  No one will blame you for that. But you can chose how you deal with it. What you present to the world. I’m glad only one person saw the worst of it. I don’t think I could ever look Julia in the eye if she saw me bent over and helpless like that.

It’s torture enough for one. But it does end. And in the mean-time it’s up to you to fight for a silver lining (Copyright Bradley Cooper).


Goodbye Hair. Goodbye Immune System. Hello Hairnet.

Christmas Day. Day one of hair loss.

I remember waking up to go to Grannies and watching more and more dyed blonde strands slip out only to stick to my thick wool jumper. A horrendous wardrobe decision. At first with the hair, it just feels a littlemore fragile - like if hair was made of paper thin glass. Then the amount itself begins to feel thinner. As you grab it in your hand, there is less and less. So frail and wispy that the wind could take it away.

I didn’t mind too much because, as I said, Jamie didn’t have to see this. Actually none of my friends were going to see it. It was obvious enough that I knew it was happening, and yet on that day, subtle enough to get through Christmas without attracting attention from aunts and young cousins. No one glanced up to a receding hairline. It was our first Christmas without Grandpa. The absence was heavily felt.

I actually had a butt-load of energy on Christmas and Boxing Day. Healthy Uncle Tim came down with gastroenteritis, but in contrast I walked 3 kilometres to the pub. I skipped half the way.

We went to hospital on Boxing Day. I threw up into a supermarket bag on the way. Godammit Tim.

We arrived at the hospital to find my room. I plonked myself on the bed, and turned on the TV. Mum walked over to do the usual routine, open the window and check out the view. She stopped just near enough to look out and said “Oh, no way”. I was irritated, at my healthiest I don’t like to move once I’m lying down. Dad looked too. Turns out my room overlooked Barons Court Cemetery. “I don’t even look out the window, and someone has to have his room. I don’t mind” I groaned.

I still felt pretty sprightly and thus pretty positive. Julia came up and brought a Doritos Cool Original sharing bag and we hung out. The doctors came in and told me that I would have to stay beyond my one day top up, because my immune system was down the toilet: I was neutropenic.

What rubbish. Apart from that one lapse, I wanted a full English and had just walked a couple miles at Grannie’s house. I was healthier than most. I was in good shape. Surely that was enough?  

That night I woke up to go the toilet. I walked past mum in bed in the dark. I stretched. Did my business and stood up. Something felt funny. Like the blood in my body had stopped moving. I took two steps toward the door and lost control of my legs. I gripped the door.

“Mum!”

Knee buckle and slam. Black.

I woke up to a bright light and nurses rushing around me on the floor. My view was 90 degrees to the right, I could see under the bed. Fuck. Did I just collapse?

“Susannah, can you hear me?”

I’ve never collapsed before. This is nuts?! I convulsed, and vomited every last Dorito onto the floor. Oh no.

There was something pumped into my cannula and injection in my butt. “Ergggggggg!” God, why. They turned me on my side and I stared up to the ceiling. Slightly shocked, lying still whilst a burly male nurse put a bucket by my head and lady nurse spoke to my mum.

 

My nurse, who I renamed ‘Nurse Smokey’ (clever), had joke shop glasses bright pink lipstick, and Annie-esque curly auburn hair. To put it mildly she got all up in my grill. She was trying to reassure me but my main problem, besides faulty legs and pile of sick, was that she had clearly had a brick of Marlboro Reds for supper. Even splayed on the floor my first thought was - this woman is trying to help you. Be polite. Resist that screaming urge to tell her to ‘Fuck off’.

I didn’t sleep that night, and they didn’t move me from the floor. The next few days were hellish. I couldn’t leave the room in case I got infected, and so I couldn’t go to a hairdresser and shave my head, let alone get a wig. The hair started clumping together on the way down from my scalp. Since I wasn’t showering there was no getting rid of it. Mum went out and bought me a pink hair net to it from molting everywhere.

Those next few days I kept begging Dr. Savage to let me go, insisting that I was feeling better and I would be careful. To no avail. Each day it looked less and less likely that I would get out for New Year’s Eve. I knew they were right but I thought of nothing worse than spending the last minutes of 2006 in bed, in a hairnet, watching London’s fireworks. I was single-minded in getting out. I had just heard that ‘the way you spend New Year’s Eve is the way you will spend the rest of the year’.

I started having injections in my thigh and stomach to stimulate my bone marrow to produce more neutrophils (white blood cells) that fight off infection. The result felt like my whole body had a headache.

On the morning of the 31st Dr. Savage finally gave in, my immune system had crawled up to a just barely acceptable level. Mum and I sped home in the car, desperately ringing the local hair salon, asking them to put a wig aside and get the clippers ready.

I think I didn’t cry when it was shaved off because by that point I was sick to death of this half bald – half dreadlocked crap on my head. I sat in front of the mirror and watched as they took off the hairnet. It was like a horror show. Half my hair had receded all the way past my ear but there were clumped chin-length dreads that hung limply. Gross. The hairdresser decided to spin me away. Mum said she thought I didn’t need to watch. It was much worse watching Mum’s face as they shaved away. Her eyes were so sad, maybe the saddest I’ve ever seen them. By the time they spun me round I was comfortably numb. I looked at my head, I felt the bristles that were left. How smooth the curvature of skull was.

My head looked like a map of the world. Not every strand had quite given out and the dark brown patches that had held on looked like continents when shaved down. The wig I got was blonde, thick and short, it was quite an obvious wig that was clearly meant for an older woman. It was cut into a sort of 90’s Rachel style. Only with a hat did it look mildly realistic.

We left the salon (Elements of Oxted by the way, which I name check because of how amazing they were – in everyday styling but also love and support).

I made it to the New Year’s Party. Getting ready at my friend Kate’s before. I took off the wig and let everybody stroke my head. These things that sound weird and morose but are so light looking back. I wore a winter hat over the wig and somehow managed to relax into the night. I met new people. I got compliments on my dress. No one treated me differently. I texted Jamie to give him a heads up on the new lid situation. He told me I looked great. At midnight we hugged as friends. I felt supported and loved, even if it wasn’t in the way I would hope for. But good enough for now.

Waiting For My Real Life To Begin

Going through cancer can be lonely and confusing as hell. Lonely physically, spatially, but it can be mentally isolating, overwhelmingly so. This is in part because, mercifully, most of your loved ones will not have much of a clue regading what is on your mind, or what you’re going through, hard as they might try. And they do. I apologise for sensitive sap that follows but I am nothing if not sensitive. My insides are comprised of the films of Zach Braff and…glass.

I’ve always loved music. Music has always been a part of my family, whether this is a uniting factor is left to be decided. Christmas concerts with my cousins used to strike fear in my heart. Nonetheless, I love to sing. I used to play piano, and I was about to take the next grade before I was diagnosed. When my grandpa died, the first thing to make me cry was that he would never hear the song I wrote on the piano. As this was my first experience with the death of a close relative, the song ‘For the Windows in Paradise, for the Fatherless in Ypsilanti’ by Sufjan Stevens was one of the few things that made me start to process the grief. How heart-breaking and final it was, something no one can put into words. My music taste may repulse some but I was 14, it wasn’t exactly developed. Nor is it now.

About a year before it all kicked off, I was learning about the Vietnam War from one of my favourite teachers. Our teacher was trying to hammer home the frustration and angry sentiment in America as the war progressed, specifically from veterans themselves and peace activists among them. It is difficult to guage from the textbooks available the kind of emotion that was felt by this generation of conscripts, especially with the emotional compass available to 14 year olds. Our teacher taught us the numbers, the dates and guerrilla warfare, but what hit home, and why this subject is one that still captivates me and many from my class, is the songs of the time that our teacher played to us.

In one lesson, we walked into the classroom and found the lyrics to Bruce Springsteen’s “Born in the USA’ on our desks, which our teacher felt encapsulated what many of those at the time felt. He played it at full volume in the classroom and we all read the lyrics down the page as the song ran on. Whereas in history, the crucial dates and battles are written and read for eternity, the atmosphere, the feeling, the gravity of those eras I found most potent in the songs and literature of the time. I didn’t know what it felt like to be drafted for a ‘pointless’ war but this hammered it a little closer to home.

In the deep, deep darkness that this sickness can put you in, not only is it difficult to talk about it with people who don’t understand but also sometimes it’s impossible to understand how you feel yourself. I can talk for days about cancer treatments and what to expect but my own words are so paltry when it comes to the feelings, the atmosphere, the fear, the colour that life takes throughout the many stages that cancer can go through.

The night I got the call about Stage Four Cancer, I had no idea what to do. So I sat down and wrote the awful song “Lights”. It’s sappy but I struggled so hard to put into words the melancholy, the fear, the faint glimmer of hope, the uncertainty but I couldn’t and I still can’t. But a certain chord progression seemed to tap into what I couldn’t vocalise. Something like a different language that didn’t ease the pain or quell any fears but they were both expressed, if only to me. A bit of catharsis. There are so many times when someone asked how I felt or what it’s like or what to do or how to act and I just wanted to play them a song or watch an episode of something and say ‘this is how I feel’. I have a whole separate, and probably equally pointless, post to write about what movies and TV meant to me. How sad.

A weeks or so after Grandpa died, I was worried about Mum. I don’t know if I regret this now but I give myself a pass for being 14 and short-sighted. Coldplay’s album ‘X&Y’ had just come out and there were two songs on it that actually seemed to put into words and chords what I thought we were feeling, especially Mum. In the car one day, I put the CD in and played the beginning of the song ‘Talk’:

“Oh brother I can’t, I can’t get through
I’ve been trying hard to reach you, cause I don’t know what to do
Oh brother I can’t believe it’s true
I’m so scared about the future and I want to talk to you
Oh I want to talk to you”

Mum had to pull over. We both started to cry. I think I just wanted to share in the grief with her. At fourteen, there wasn’t much I could say to make anything better, nor should I have, but I wanted to show some solidarity and understanding. I’ve only seen my Mum cry, maybe, four times in my life. The woman has cahones. The other song is ‘Fix You’ but it’s toooooo sad.

When I googled ‘songs for cancer’ (yeah sorry) to try and jog my memory a bit, I saw that everything was about ‘cheer up music’ or ‘inspirational fighting’ music. There is a lot right with that but the market is oversaturated. Maybe all you want during this time is not to think about the sad scary stuff, and that is totally okay, I only watched happy comedy films and crap TV. I know One Tree Hill back to front. This is more like when you read a book, and a paragraph stands out that makes you want to say ‘God yes! That’s what I’m thinking!’.

When I came out of surgery, my best friend Julia made me a mix-CD (remember them?) with songs that had ‘cancer’ or ‘being sick’ and ‘taking care’ of me in the title and one song about a woman called ‘Edna’. I listened to it non-stop. Julia is an absolute rock. I mean that she is both a loyal friend but she was always impenetrable when it came to the mushy stuff. As my best friend she was there all the time and I felt supported but that CD, depressing in parts as it may have been, it expressed to me that she was there for me whatever was coming and that even if we were both scared we would face it together.

The song that meant the most to me, and I think sums up somewhat how I feel about my time with cancer, and infertility, and kidney disease, and being intersex is called ‘Waiting for My Real Life to Begin’ by Colin Hay. It’s supposedly about someone who has not achieved what they want in life but won’t let go of their plans. I took something different. For me this is as close to a support group or someone saying ‘I get it’ as I got at that age, and it still means a lot to me now. It got me a little further to accepting that this life is not at all what I expected, and I still have big plans and lots to accomplish but my health will sometimes bring me down. That this time is hard and sad but there will be something better to come and I just have to be ready for it. Just keep checking and be ready for it and keep moving forward. It also helped me grieve the life I took for granted at the age of 15. I got it from an episode of Scrubs (thanks Zach Braff). 

I sat in my hospital room when I was on my own and listened to the song on repeat trying to make sense of what was happening. At one point, I told my mum that this would be the song I would want at my funeral. This song was both my ‘Keep Going’ and my ‘Oh Fuck Why?!’.

Anyway here is the song and the lyrics – in the style of my history teacher. Maybe it will mean the same to someone else too.

Any minute now my ship is coming in
I’ll keep checking the horizon
And I’ll stand on the bow
And feel the waves come crashing
Come crashing down, down, down on me

And you said,”Be still, my love
Open up your heart
Let the light shine in”
Don’t you understand?
I already have a plan
I’m waiting for my real life to begin

When I awoke today suddenly nothing happened
But in my dreams I slew the dragon
And down this beaten path
And up this cobbled lane
I’m walking in my own footsteps once again

And you say,”Just be here now
Forget about the past
Your mask is wearing thin”
Let me throw one more dice
I know that I can win
I’m waiting for my real life to begin

Any minute now my ship is coming in
I’ll keep checking the horizon
And I’ll check my machine
There’s sure to be that call
It’s gonna happen soon, soon, oh so very soon
It’s just that times are lean

And you say,”Be still, my love
Open up your heart
Let the light shine in”
Don’t you understand?
I already have a plan
I’m waiting for my real life to begin

—-

On a clear day
I can see, see for a long way

On a clear day
I can see, see a very long way

 


Alls Well That Ends - Oh S***, Wait.

Last I left off, in chronological order, was surgery. Having the surgery. The surgery in hindsight was not nothing, but it paled in comparison to what came next, because we all thought the surgery was the end of it, and therefore the shock of finding out the opposite was all the more jarring.

I want to preface the next few paragraphs with a hypothesis I have, about how life shows up on your face and body. Stress can make your hair fall out. Hard falls leave scars and bruises. Laughter leaves laughter lines.

Set aside you hatred or admiration for the following example; Tony Blair (yes) was on Parkinson in March 2006. My grandpa was sick but we did not know quite how sick. My cancer was an impossibility. I remember watching this man, the ultimate politician, who had all youth, vitality, and charismatic ease only six years previous, and I thought about his face.

I remember thinking that one half of his face seemed older than the other. I thought, that this half of his face has absorbed all the stress of his time in office. The Iraq War, The ‘Sexed Up’ Dossier, Northern Ireland, Kosovo, Sierra Leone, Afghanistan and so on and so forth. I thought that all of that showed on one side of his face, whilst the other stood older but less ravaged, moving deliberately through the interview.

Do not mistake this reference for sympathy for Blair. This is just the first time I thought about how life can etch itself on your face and body.

Friends, new friends especially, look at old photos of me from before cancer. The last few of my thick and lengthy brown hair. Most people say I look like a different person. I absolutely do…I was fifteen then, I’m twenty-three now. But especially to me, that person is unrecognisable. Honestly, I thoroughly dislike that person. From the start of chemotherapy, elements of my face started to alter. I have deep dark circle under my eyes now, that have never left, but some a lot of different aspects of my face have changed that are hard to describe. And even though my family might tell you differently, I think one half of my face has sagged a little lower, and maybe looks a little older, a little sadder.

After surgery I thought we were in the clear. I really did. No seriously. I thought I got out without a scratch (except for the long jagged scar). After the big ass tumour was removed, we found Dr. Philip Savage. Easily one of the most important people in my, and many other people’s lives. Who I thought I would barely get to know, because surely everything was back to normal from here on in.

Mum was going to start work that week. We were focused on recovering from the surgery. Walking and eating and pooping (yeah that’s actually the biggest post-surgery challenge). We had a blood test, and a scan. The scan involved a painful needle that I complained wildly about, and ended up bloodying my hospital gown. I felt no foreboding, no sense of dread, no fear, no anticipation of the results.

In December, not long after the scan, the phone rang in the kitchen. I was home alone. Mum was on her way home from work. Dad was on a train. Juliet was at school. I was wearing my Mickey Mouse mosaic t-shirt from Disneyland, soft and comfy from sweat and overuse. The house was dark, except for a lamp in the kitchen. It was pitch black outside and I picked up the phone. Dr Savage wanted to speak to my mum, so I said she wasn’t there and I insisted he tell me what was up. Dr Savage was not at all happy with this situation. I forced it. Withholding the information meant it had to be something worth knowing.

I don’t remember what he said exactly. Adrenaline shot through me like a bolt of lightning, I felt like my stomach was ripped down and out of me, and all I could think about was not crying on the phone to Dr. Savage. I don’t remember exact sentences, just words: “spread…lungs…metaticised….when….tomorrow….chemotherapy…HCG…CA125….I’m okay just tell me, I want to know”. I told Dr. Savage to call my mum on her mobile and hung up. I called my dad on the train. I called my friends on the bus.

Writing this I asked my parents what happened and how they felt, I’ve been experiencing a bit of a brain blockage. Dad said he broke out in cold sweats. Mum had to pull over.

I gave a talk at school a year after chemo finished about a project I was working on for the Teenage Cancer Trust. I talked about the night I found out that it spread. I called my best friends, who were on the bus home from school, and said something along the lines of ‘Sorry guys, it’s not over…looks like I’m going to need chemo…bummer.” They said they would come over as soon as they got off the bus.

When I think about the, maybe, twenty minutes between hanging up on my friends and them arriving at home, I remember dead silence. I was scared shitless. I felt cold and alone. I panicked. I remember giving myself twenty minutes to get my sh**t together before they got to my house. To get myself into airplane mode. I stared at my hair and face in the mirror.

I tried to breath and calm down. I turned the lights on in the house. I played the piano. I had just written a song about a boy at school I really fancied, which I played with my friends when they arrived (this mortifying pile of rubbish stayed on their iPods for the next couple years).

They asked me if I wanted to talk about it. I said ‘no’. I said that we would deal with it as it comes. Motherf**king mature for a 15 year old?

My mum’s brother Robin came down from London. Mum called Grannie, who had just lost her husband to cancer, and they cried. Dad chose not to tell Grandma and my American family just yet, it was too much and too far away. We sat around the kitchen table, me in my Mickey Mouse t-shirt, and the adults in their work clothes. They clutched glasses of wine. I sat on my hands, and we talked about the year behind us. Mum and Robin were talking about how shit it was (fair enough).

This is why I love my family. We talked about Grandpa dying and what that had done to the family. How dark and sad the year had been. I piped up after a while: ‘Hey it’s not so bad! We had that great holiday in Canada’. Robin turned to me and said ‘Yeah it’s easy for you to say!’, and I nearly laughed those little tumours out of my lungs. For hours we sat around that table with heavy chests and heavy hearts.

That night is the saddest and most surreal it ever got for us, or me rather. Post-surgery, pre-chemo, pre-cure. We had hospital first thing in the morning. Mum hugged me and Dad researched the chemo drugs I would be taking. I remember looking at my face and feeling old, and wondering how old I was going to get.

I’m sorry that this is such sad post. But sometimes you have to let things be sad, to give them their proper credit. From this point on it was rough but, as you know, I’m still here. That isn’t the same for everyone. It is incredibly hard to comfort and console people who aren’t contending with a situation that will get better. This post, for those in any sort of similar situation, doesn’t have any advice or solace beyond the comfort of friends and family at a shitty and scary time. If you are in this situation I hope it helps to know that other people have been scared by this too, that to me always makes these unknown and frightening times less lonely. Less unchartered.

I can still see, subtly and overtly, what cancer has left on, and taken from my body. My face. My hair. My scar etc. They make me sad but they also remind me of what I’ve been through. When I start to take life for granted again, they remind me of its frailty and of its value. 

Thank you, and yes please more.

I’m writing this quickly, I’m still working on something that’s taking forever but I don’t want to leave these posts for too long. It’s a thank you to every response in my last post.

I felt the impetus to write this the other day, at work. Someone came into the office and we exchanged pleasantries and then before I knew it started talking about near-death experiences. I would say ‘like old friends’ but that isn’t something old friends talk about. In fact, it’s rather alienating.

The man asked me, after we exchanged stories of hospitals and flat tyres, whether I had learned anything from coming close to death. He said he still felt the same. I said “Yeah, kinda. I mean I love life now. I don’t take anything for granted. I’m better than the moody sod I was before.” That is so easy to say isn’t it. People do catch themselves taking things for granted don’t they?

My housemate and I started watching 'Cosmos’, hosted by Neil Degrasse Tyson. In typical fashion, I decided I wanted to know everything about him and the black holes he was talking about. He makes a podcast called 'StarTalk Radio’ where he talks about the universe and everything else (it’s great have a listen). One episode has him and my hero, Jon Stewart. Two genius’s, one audio booth. 

They talked about scientific discoveries, leaps forward, and how we take them all for granted. Flying on an airplane, something that literally defies gravity, and we complain about the seat we get or whether it’s peanuts or pretzels. 

They both made me think about cancer. What cancer taught me. If you’re like me, 'a survivor’, for lack of a better descriptor, this may be the best part of getting to go back to your life in remission. Taking nothing for granted. Expressing enthusiasm and gratitude for pretty much everything (not necessarily aloud). But yeah, everything. I mean it. 

A couple months ago, I had the most grateful moment of my life. I got my first pay check, for a job that I love. Capitalist, yes, but bare with me. I stared at it for 10 minutes at the very least, taking after last blue edge of it in. I thought about how far I’d come. I took a really long time, out of the work I was supposed to be doing, to let it sink in. I have a job. A job I love and get paid to do. I am 23 years old. I have been in remission for nearly 7 years. I have long hair now. I have friends and family who I still get to see. I’m alive and I have a pay check.

My friend at work saw me staring it and joked “I know, it’s not a lot is it.” I didn’t tell him or anyone except my parents what I was thinking. I just soaked up the fact that I got this far, that I got to see this. 

In the car journey back from Charing Cross Hospital, when the cancer spread to my lungs and chemo was imminent, I realized I had Stage 4 cancer. I remembered that statistics for my cancer weren’t great once it got that far. I remembered, looking at the pay check, every moment in life I wasn’t supposed to get. To graduate. To go to university. To have a boyfriend. To have sex. To have a job. To get a pay check. To see the rest of the world. To keep living. They weren’t going to happen as far as I was concerned, at that point.

7 years later. I stare at my pay check and count my lucky stars that I get to hold it and stare. At 15, when I pictured the life I was going to miss, this was as far as I could imagine.

I annoy people with my positivity sometimes. I call everything 'brilliant’ or 'awesome’. Shit that really isn’t that great, I go nuts for. Peanut butter. Diet coke. Cold weather. Knitwear. Running. Good TV. Blankets. Drapes. Smoked Salmon. GOD I LOVE TV. Comedy. Wood floors. Someone saying thank you. Ugly carpets. The noise of the water pump in my room. Getting to go to work before the light is out.

People who hate exercise. I feel you. It’s a total shit show. I sweat so much I’m asked, on a regular basis, if there is a leak in the gym. BUT, and it’s a big but, spend a year strapped to a hospital bed staring out at a gorgeous London skyline that you don’t get to touch or breath in. Cut a few scars in your abdomen and try to limp to the bathroom. Pump poison into your veins and think about all the things you can’t do and don’t get to do and maybe won’t get to do. Then tell me you don’t think about running.*

I am terrible at running, it hurts and I can’t do it for more than 20 minutes or 4k. But every time I leave the gym, and every morning I get to work, and every time I eat Reeses Peanut Butter cups I am so bloody effing wheezing thankful that I can.

I hope this isn’t preachy, I don’t mean it as a wake up call or a sermon. I complain, and I’m sarcastic, all the live long day too. I’m sad for all the things I’ve spoke about here before. I’m not ignoring all the crap and sadness that’s out there in the world, but this is one of only two things to come good out of cancer.

If we hang out and I tell you excitedly that this coffee is 'sooo good’, and this sofa is 'unbelievably comfy’ and 'I’m so happy and excited to see you’, I’m sorry if it’s too much. But sitting in the lumpy sofa, and smelling the crappy coffee, and getting to sit with you reminds me every day that I get to be alive and everything that comes with that.

*Full disclosure I would be lying if I didn’t say I run to try and look good in a bikini too but sshhhhush (focus on the philsophizing bit).

Here goes nothing, and everything.

I started a blog last year called ‘Chemo-Sabe’, which people were kind enough to read, and occasionally enjoy. It was meant to be honest above all things, with the aim of helping anyone with cancer or ‘cancer-adjacent’ to get some catharsis, realize that they weren’t alone in what they felt and thought, and that all the ugliness and horror of cancer was a burden that someone else had shared. It doesn’t sound like much. It wasn’t a home-cooked meal or a charitable donation, but it meant the most to me when I was in the thick of it. That it was nothing to be ashamed of, and that being open about it can really help.

I stopped suddenly because I realized what I would have to write about if I wanted to continue in that vein. Here goes nothing and everything…

If you know me, you know me. I hope when you read this it doesn’t change your opinion of me. I would ask you to hold that image of me in your mind when you read this, good or bad. I’m taking a risk here, and instilling a great deal of trust in you.

I have Fraiser Syndrome.

I am phenotypically female. But I have typically male chromosomes (XY). It is an intersex condition, responsible for my cancer, crappy kidneys, and much unhappiness.

If you’d never met me. If you’d looked at a genetic blood test. You would think that Susannah might be a Simon. I won’t give you a biology lesson here but I ask politely that you do not Google this, there is a host of crappy information, often incorrect, that has caused me a great deal of unhappiness in the past, if you want to know more – just write to me. And to save any awkward questions NO I do not, nor have I ever had ‘male bits’ (not that it should matter).

I’m not a Simon or a Stephen. I’m a woman. I’m just me.

For my friends, the truest and best, this is not a shock. I’ve told you. You’ve  ALL been wonderful. I can’t thank you enough for being supportive through phone calls and having the maturity to deal with concepts far beyond our maturity levels.

You may be wondering, “why are you telling me this? Is this my business? This is really personal? No one actually needed to know.” I am telling you because this year I decided,fuck it. I will not be ashamed anymore. I will not wonder and cry over how the world might treat me if they knew. I can’t change what I am, but I can try to change how I feel about myself, and MAYBE how other people see me.

Good lord. This is serious. Let’s talk about something kind of cool. Apparently people who are born like this have better skin, bigger boobs and longer legs. Which is why a fair few people have questioned whether several models and actress are born with an intersex condition. Good company, potentially.

BUT, as you might have guessed, not a lot of people are happy to come forward with this kind of information. That’s their choice and I would never begrudge them that. Strange considering an intersex condition is as common as red hair or twins. TWINS!

If you want to know why I am ‘coming out’ with this, after 7 years. It is because I recently found a woman called Eden Atwood. She is a beautiful jazz singer and model. The kind of woman I have been comparing myself too and judging myself against since I was 16. She it turns out is on the same spectrum as me. What made me want to come clean is that I realized something that my friends have been telling me for years: she is all the more beautiful for it.

 

 

I am not repulsed by her.

I am not disgusted.

I do not think she is an abomination, as I thought society would think me.

She is beautiful. Stunning. Somehow after years of only seeing horror stories and testimonials about the heartbreak, and insecurities, and loneliness an intersex condition can bring, she has undone it all.

The words of Emma Watson and Lena Dunham, along we a general change of conversation on gender, have also made me feel safer in who I am and whether society will accept me.

Some of you, when I’ve confided in you, have asked me why this is a ‘big deal’ or even just a ‘deal’? I’m writing this because until Eden, there wasn’t enough out there to convince me that I wasn’t a freak. Because of this I have had depression, an eating disorder, and like so many others who are diagnosed, I considered suicide. I punished myself and held myself to an unattainable standard of beauty, that if I deserved because I wasn’t a ‘proper woman’. At my lowest I thought that I was a freak of nature, and God gave me cancer to correct a mistake. I thought that no one would ever love me and would be alone for the rest of my life. No one should have to feel like this.

I don’t dislike most people that I meet. Jean-Paul Sartre said “Hell is other people”, my Grannie says the exact opposite, and that is what I try to live by (even when I want to push/murder people on my commute). So here is me taking a step and trusting that people are good-natured, kind and accepting (despite any and all evidence to the contrary).

I was wrong about myself. Someone did love me. And my friends and family have continued to love me.

I write this in the hopes that I continue to be proved wrong.

No Kids.

This is one of the most difficult entries to write. I’ve had it saved on my computer for a while but I get too scared to post.

This may not affect everyone reading this, cancer or no cancer, but I believe an ability to empathize with the issue is universal. For those reading this who are close to me, I hope that this won’t affect how you see me too much.

I want this post to be unapologetic. I’m not going to belittle the problem, or talk about relativity or staying positive. I am positive and optimistic but if you are someone who has had cancer/is going through cancer and it affects your fertility, particularly if you are a woman….this shit sucks. It just sucks.

It is up to you how you handle it, but I think you have to grieve that loss…but not forever. The details are not of great importance, and whilst it is a very personal and private pain I feel it is important to share it here. I personally believe that everyone is entitled to whatever reaction they feel like if this happens to them. If you want to scream and shout, you should do it. If you want to cry, you should do it. If you want to construct a collage, it may be a little ‘off-centre’, but you should do it.

I found out early on in my malignancy that I wasn’t going to be able to have children, at least not naturally. Having had both ovaries removed has a variety of irritating side effects, some physical and some psychological. Whilst my parents and me might have hoped to freeze my eggs, that possibility did not present itself.

I’m going to be frankly honest here and I’m sorry if you are reading and this doesn’t bring you comfort. It has been 7 years and it still hurts, a lot, and I wish it didn’t.

It hurts when I play with my friend’s amazing daughter. It hurts when I see photos of my boss’s kid on his wall. Sometimes it comes from a doctor asking me ‘How I’m going to tell my boyfriend…surely that’s a big deal?’ or simply exclaiming ‘No ovaries…No kids then’. It’s a lighting bolt of sadness, the only sadness that has stayed with me after cancer.

It makes me feel less of a woman, that there exists a fundamental flaw. It feels like a failure. That people can tell.

My biggest fear – and this is one I’ve shared with few – is that no one will marry or love me for that reason. That’s a hard one to admit. We may not live in a medieval age, where women have but one purpose, but still I think of some future partner’s parents…. who wanted their own grandchildren. Who am I to deprive them of that? Why shouldn’t they have what comes naturally to so many other people?

It feels empty and yet crushing. It feels like the one thing I was supposed to be able to just…do. I think of the names I had thought about at 12 or 14. That he or she might look like me, or even act like me. That whomever I loved, he or she would be this bizarre exciting combo of the two of us. That hurts.

There are times when it doesn’t hurt as much.

I try to stay positive and think of the millions of opportunities to become a parent another way. None of which should be lesser, says my rational mind. My friend, with Two beautiful daughters now, told me “it doesn’t matter where they came from, but that you are the one they need”. Adoption, surrogacy…. future cloning options…it is all possible and I’m sure as fulfilling as natural conception.

My most comforting memory is when I was watching Modern Family, feeling pretty bumtown. My friend pointed out what Mitch and Cam said about Lily (their adopted daughter for those who don’t watch)

“She’s not ours, but we made her.”

 

It is also allowed to hurt, and it is a very private hurt that I have shared…in the hopes that those reading this may understand and be comforted in the idea that someone else is going through the same.

We’ll see what happens. I hold out hope. 

A bit like Rent, I guess.

I have the next chronologically sensical part of the story in my Tumblr drafts. I sat down to write it and I have yet to post it. Honestly, as I have said before, words really do fail me a great deal. Anyone who knows me will know how a conversation with me is rarely linear. I’m all over the place, tending to assume that everyone can follow the, often bizarre, tangents I choose to direct us on. 

So for the next topic. Surgery to remove Edna. I didn’t know how to do it justice.

Was I scared? Yes. Well sometimes. Sort of. I spent 6 hours in my hospital room beforehand taking ‘selfies’ on Photo Booth and planning the movies I was going to watch when I woke up. (Hold judgement, I was 15…everyone sucks at that age). This is perhaps why, in a karmic fashion, one particular shot got into the local paper:

 

Did it hurt? I was 'out’ for all of it. My last words to anyone, my parents, before going under were “Oh Jesus Christ! Thats a big needle…..”. I said 'I love you’ as well. Then I woke up to a healthy dose of morphine. It’s brilliant. You should try it. (DON’T). That wore off. It hurt, to borrow a phrase from a new friend, a 'shit tonne’. Then I pressed a button. Got some more. All giggles again.

I’ve got some really gross photos to show you of Edna, my tumour, once I find them. She was pale and veiny and disgusting. Much like me. She was also very fat. So naturally I have a giant scar, which at the time was every so slightly tender…

This is not what I want to share however.

Along with a hyperactive imagination and scatty conversation pattern I am also very optimistic and idealistic. I try to look for the best in people and in situations, even if said qualities are not immediately visible. Some people do appalling things, purely out of self-interest. I study Politics. Nuff said. On the whole, however, I believe people, given the opportunity, have a great capacity to love and support each other. That is how I like to measure my life (get the Rent reference now? I’m half-American please give me some leeway for sappy nonsense). 

I’m not capable of adequately describing what I felt when I woke up however many long hours later. I have some photos that might explain.

This is why I love my friends…

They all came in when I woke up, wearing these badges.

 

 

I have a box full of every card I or my family ever got during cancer. Most of them I received during chemotherapy or surgery. I tried to spread them all out on my bed. I’ve not done a 'good’ job of it, in the strictest sense. This is why I have a good view of human nature. Yes. This is based almost entirely on my own, unique, personal experience. However, it remains unshaken. It may be unrealistic, naive, and idealistic to some but I have full faith in it.

 

 

My favourite card is homemade from my best friends, who I’ve known since I was 8:

 

 

My sister Juliet, made a whole album for when I got home.

 

 

This is what I take from my surgery. That it was rough and painful and scary but the most important thing was, and remains, that an incredible amount of people were behind me and my family. 

My Grannie, Barbara or 'Babs’, is an amazing woman who I draw a great deal of strength from. She has had ovarian cancer, breast cancer, lost a husband suddenly, and had 2 strokes that have left her with limited use of the left side of her body. She has always gone to church and been a lively part of the church community. When I asked her about faith and what 'believing in God’ meant to her, in light of all she had been through, she told me this:

“God is not an unknowable being in the clouds. God is love. God is the relationships you build from the love you give, in return that love is given back, one way or another. God is not something or someone who decides what happens to you. God is the love from the people around you, who are there for you when things do happen.”

Something like that.


Fifteen to Thirty.

Despite how big a deal cancer is, the weeks following my ultrasound are fuzzy. I remember clearly what happened but I’m not as certain as to when. It’s a bit of a mess.

After the ultrasound I was taken to see Mr. Townsend who specializes in gynecological maladies. Mr. Townsend is an incredibly kind and capable doctor to whom I owe a great deal. At this point it all seemed relatively simple. The idea of a cyst was scary but not too scary. I’m not any kind of medical professional, although an amalgamation of Grey’s Anatomy and long hospital stays have led me to think otherwise, so I won’t begin to explain the science of my cancer. I do however remember being told that my LDH tumor marker level was at 2200 (the normal levels varying between 100-300). Whilst it sounds fairly abstract this really brought home that the mound was no longer a joke.

This is another instance where words fail me. I honestly don’t think the word ‘cancer’ was ever thrown into the mix. I was handed ‘ovarian germ cell tumor’, ‘dysgerminoma’ and ‘malignant’ (don’t Google them it isn’t pretty or helpful). I remember what I was wearing; I thought I looked pretty good. I was with my parents, I remember that too. I remember looking at them to see if they understood. I remember being speechless and numb. I remember most starkly, my mouth cranked open on the car ride home. I remember composing text messages again and again to friends. In hindsight, this wasn’t the smartest way to clue them in. I remember trying so hard to process what Mr. Townsend said and to try to nail down exactly what was happening. I can picture trying to force an acceptance that I was 15 and I had cancer, this was the truth.

I just couldn’t. It didn’t seem like anything. I didn’t cry. I certainly tried. The whole situation was abstract and surreal. I couldn’t accept that this was what it was. I kept trying to force a square peg into a round hole. The whole idea was nonsensical. I remember clearly trying to piece the whole thing together. I tried to tell myself that I saw this coming, when I clearly didn’t. That one time I thought to myself “I wonder what cancer is like,” in an English lesson, perhaps I deserved it.

I say I remember everything because I do but to be honest, 7 or so years on, it feels just as it did then…alien. Some would probably say this was shock, pretty common and arguably understandable, but I’m not sure. It felt more like one might feel after being scolded by a teacher or boss. Between the word ‘malignant’ and ‘surgery’ I think I aged 15 years. Time to put my blinders on, shift into automatic mode, and shape up. Things are about to get rough and there is no avoiding it. There was no more coasting; there was no safety net. 

More than background info…

 Whilst this story is intended for anyone who has any experience with cancer, I would be remiss if I didn’t include a crucial element that diverts from my own personal experience. This is in no way just my story, it is my friend’s and family’s as well. I think it is crucial to remember that always.

Approximately 6 months, before I was diagnosed with cancer, my grandpa, my mum’s dad, Malcolm Peters, died of a brain tumor very suddenly. He was just 75, and despite having lived a full and vibrant life, we have all felt that we were robbed of 10 years.

We loved him very much, as did his entire community. His funeral service was crowded with people who respected, admired and loved him.

I remember him as best I can, often supplanting memories with photos, and what I know is the same as most everyone who knew him. Grandpa was, as put so well by the Leamington Society, “kind and considerate; above all a man of judgment and integrity, as befits the very best of business economists”. Without a doubt he was the patriarch of the Peters family, and even today big events beg the question “What would Dad have thought?”.

I believe that coping with a loved one with cancer is infinitely more difficult than taking it on yourself. My mum has a kind of strength I will never understand. I try to imagine what it must have been like, after losing your dad, to attempt to cope with your eldest daughter being diagnosed with the same illness. For her to have to call Grannie and tell her that her eldest grandchild has cancer. I do not envy the helplessness they must have felt. The great unfairness of it all, my mum and God were not on speaking terms.

This is perhaps the least light-hearted of my posts but I do not feel it is a subject to be taken lightly. Whilst I do not advocate putting your own needs and feelings aside, if you have cancer yourself, I would strongly suggest sparing a thought for your loved ones. There is a pain, and fear, and sadness that we don’t experience. We are the fighters on the frontline; they are the ones at home waiting for news.

Without giving too many ‘spoilers’, Grandpa was a great source of strength for me throughout, but he was crucial when I had to undergo surgery in St. Petersburg away from my family. Whilst on the phone to my mum, before going under, she told me “Grandpa will be with you”. I am an awkward British-American hybrid and sharing this with you feels both necessary and overly emotional. I mention this rather painful exchange because at that time, when the situation was quite desperate, hearing that sentiment from my mum brought home both the severity of the situation and gave me the stones to go through it alone. 

*(Not quite alone…pity the poor/incredible Russian teacher standing next to me translating medical Russian).

Anyway, this is him at my Auntie’s wedding in 1988


Right. Let’s not make a fuss.

I hope that if you are reading this you were not as stupid as me when you found your tumor. Continuing under the impression that the mound was another uncomfortable step towards womanhood, I kept quiet about it for a couple of weeks. Stupid.

When I finally mentioned it to my mum, and we paid a fun visit to the local GP, I felt like a complete idiot. There was surely no need for this kind of fuss, which is an attitude I haven’t lost post-cancer. There is a sincere relief I experience when my headache and fever means malaria instead of a virus (this has happened…poor Mum). Excuse the generalization, but this to me is quintessentially British phenomenon, which whilst not entirely negative, can amount to calling mountains molehills.

If I give any advice, it is the same that was told to me the second I met my oncologist…”Don’t be a martyr”. If you have a headache or ball-ache (sorry), then tell your doctor about it. I’m not advocating developing hypochondria; this is more specifically a position to adopt if you are already experiencing a chronic illness. This attitude has lent itself to spotting a host of other fun diseases that have cropped up over the years.

I should state at this point that I had experienced no ‘noticeable’ symptoms. Edna was a sneaky old turd. This remains common in many patients with ovarian cancer but recently the discourse has shifted from that of the “Silent Killer” to that which “whispers”. There are many signs to look out for and some helpful websites for these are below:

Macmillan (an organization I love – that was of great use to me during treatment)

http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Ovary/Ovariancancer.aspx

Ovarian Cancer Action

http://www.ovarian.org.uk/about-ovarian-cancer/

The GP’s theory at this point was that I had an ovarian cyst. They are relatively common in girls of that age and, arguably, simpler to deal with. As a precaution, I was given an ultrasound the next day as the mound was quite large by this point. I thank Dr. Jones profusely for this. Any pregnant woman will know the hilarity and strange discomfort of a technician spreading a clear jam on your belly with your pants around your ankles. I get very chatty in these situations, and see them as a prime opportunity to try out some classic comedy. The woman doing the ultrasound, who happened to be a family friend, spent a fair bit of time chatting about the previous boozy weekend with my mum. However, quickly into the ultrasound the chatter stopped (not dramatically, to be clear, the woman was concentrating on her job).

Hindsight has enabled me to realize this break in conversation was not the best sign. This is the beauty of hindsight, in that it sews events together seamlessly. Every vague symptom, every stone-faced technician contributes to the inevitable conclusion. In truth, I had no instinctual sense that anything was wrong. I suspected zero. Nothing felt awry and there was no impending sense of doom. I went home and I watched the OC (I mean the News).

I used to look back at this with occasional frustration. Why and how didn’t I see this coming? The idea of cancer never even floated in my imagination (which has a habit of wandering). Were time travel possible I would have gone back to that dopey idiot on the couch and tell her to brace herself. I would tell her stop ‘counting her chickens’, also because that’s weird and if people see her doing it she will not make friends. I would tell her not to call her friends and family, telling them that ‘the mound is just some cyst, and it’s actually hilarious because they can get so big you fall over’. I would shout this because next week she will spend the car ride home from Mr. Townsend’s office, mouth fully agape, and call them all up again and explain that she has no effing clue what is going to happen because it’s cancer. That now is perhaps the time to make a fuss.  

*to clarify I do not now and nor have I ever owned chickens.

Thank God I got drunk and fell over.

We start at the beginning. It seems to be a common theme that everyone who has had cancer has a specific and unfaltering memory of where it all began. For me it all began at a party in 2006, brace-faced and bracing myself for an event I felt very privileged to be invited to.

The story, when I tell it to new people, is relatively simple. In a nutshell, I got really drunk (yes…underage for anyone who is better at mental arithmetic then me) and, quite literally, fell on it. I had to be picked up by my Dad, who watched me wailing about in the front seat of the Volvo, insisting that I had either been spiked or had had an allergic reaction, the symptoms of which closely resembled being completely battered.

For any 15 year olds who have stumbled into this situation, try to avoid the pitfalls of ‘downing a cup of vodka’ to impress your friend’s older brother. They will not care. You will look like an idiot.

Upon arrival, back at home, I fell violently up the stairs and landed with my hand pressing into my lower abdomen. I remember this because this was my first knowledge of ‘Edna’, the smooth and previously unknown mound on the right hand side near my hipbone. The rest is a fuzzy mess but I remember keeping my hand there for a while, trying to assess whether I had noticed this mound before. My first reaction, endemic amongst many teenage girls, was ‘I’m getting fat’. Why in one specific area…I’m not sure, but surely that was it.

I have spent many an evening with my parents debating whether it is a great thing I got smashed and had to be forcibly removed from a party in front of my parent’s friends. Otherwise, who knows when I would have found Edna. It’s not a convincing argument.

Either way, this is me below in the blue dress (the theme of the party was green…who did I think I was?)

I’d like to slap me in the face too.

What can I honestly tell anyone reading this that is new or comforting?

What can I honestly tell anyone reading this that is new or comforting?

 

In beginning to sit down and compile all the material I can find from my time with cancer what stops me from posting is that I have nothing necessarily new to share with anyone. There are plenty of blogs and more reputable websites detailing how to prevent, live with, move on, or accept cancer for whatever position it has taken in your life.

 

In truth I found very little solace during treatment or thereafter from the Internet. The comforts I found were in other people…real people…who I could talk to. People like my parents, my grannie, my oncologist, my sister, my nurses, my friends all of whom have gone beyond the call of duty. If anything the Internet scared the grey, cotton, ‘Days of the Week’ pants off me.

 

If you have cancer, or you have a loved one with cancer, I can only hope that what I post will be a substitute for what I would rather do…which is sit down and talk with you…or rather, not talk with you, as words tend to fall short. More likely I would exchange a glance with you that says, “Yup, I just about get it”, and offer you one of the two-dozen Krispy Kremes my dad brought. I’d tell you about how green tea is the only thing that got rid of the vile taste of Etoposide, and about the time my hospital room overlooked Baron’s Court graveyard.

 

I know that I am lucky beyond belief. Firstly, I had great medical insurance and a dad and uncle who know their way around medicine. I’ve had a dedicated and meticulous oncologist and medical team, all with a great bedside manner. I’ve had my mum by side this entire time. I’ve had friends’ kind enough to engage in the blackest of humor and take multiple trains and time out from school to visit me. Most importantly in this, I am fortunate enough to have survived my bout with cancer and, subsequently, everything else. In sum, the highs and lows of my own experience pail in comparison to what some of you have gone through or will be going through, and therefore my stories may seem hollow or insignificant.

 

But that is the first lesson I learnt in living with cancer: Everything is relative.

 

If anything at all, I hope this blog serves to some as a friend, sitting opposite you, trying to make you understand that you’re not alone and that there are people who have lived through this and thus, there are ways to get through this. There are times when you will go into automatic pilot in order to “Keep Calm and Carry On”, there will be times when this may seem hilarious, and there will be times when it is just…enough.

 

I have some experience with all the above, and I hope that in reading these posts you come to feel, at the very least, a little less isolated, perhaps even entertained…