Tumour Has It

A letter dropped through our postbox this morning. From the NHS. Addressed to me. I presumed it would be about my impending appointment to pop along and see my surgeon and have my new medical photographs taken (as weird and as funny as it sounds). Alas, it wasn’t an appointment about my boobs this time. It was a letter to tell me it’s time to go and have my cervix checked out.

Women aged 25 to 49 in the UK are invited for cervical screening every three years, but recent information released by Jo’s Cancer Trust have shown that one in three women aren’t attending their regular check ups. Whether is through busy-ness, or fear or apathy, I’m not sure, but one thing I am sure about is that we need to get out of the habit of putting things like this off.

Right now, I can literally think of nothing worse than having a test for cancer and having to wait until the results come back. I’m still pretty traumatised from all of the drama I had when the assisted conception team tried to get my coil out before I started treatment to protect my fertility in case chemo ravaged it completely. I won’t go into details cos it’s a story for another time, but all I will say is they spent about 50 mins trying to get it out, and failed. While I was reminded of the chapter in Eve Ensler’s Vagina Monologues “Because He Liked to Look at It” it was not a pleasant experience for anyone, least of all me.

So yeah. I get that revealing your lady parts to a doctor is not a particularly nice thing to have to do but, and I understand that having a test for cancer can be a bit scary and a bit overwhelming –  but it is imperative. And actually it’s not all that bad. Sounds like a stupid thing to say but the more relaxed you are, the easier it is. It’s a bit uncomfortable but it’s much, much better than the alternative.

According to Jo’s Trust “cervical screening is 80–90% reliable and can prevent 60–80% of cervical cancers. This means that seven out of every 10 cases of women who would have developed cancer of the cervix can be prevented.” Sounds like a pretty useful tool to me. And it’s like always say when I’m talking about checking your boobs, knowledge is power. You owe it to yourself to get checked out, because a healthy cervix is a happy cervix, right?

I recently met a pretty special lady called Karen. Karen and I are both part of an organisation called Trekstock, and we’re both lucky enough to be in the group of people classed as “young adults with cancer”. I know right, what an awesome and elite group to be part of!

Karen was diagnosed with cervical cancer in 2014, aged 25. Since her diagnosis and treatment, she’s dedicated a lot of her time to raise awareness of cervical cancer and gynaecological disease. At the moment, Karen’s doing this through her one-woman comedy show Tumour Has It. As we speak, she’s up in Edinburgh performing this show to the masses at The Fringe. Billed as an “honest and hilarious tory of her cervical cancer extravaganza” told “through comedy, storytelling and a poem to Svetlana the Tumour”.

But Karen wants MORE. And I want MORE for Karen too. She’s determined to keep telling her story to new audiences and has turned to Crowdfunding in an attempt to raise enough money to keep her show going around the country when she gets back from Edinburgh. She needs £££ for venue hire, production costs, marketing and promotional materials (including a badge that says the word “vagina”). Her target is £7000 by 26th August.

Here’s a little to do list of things it’d be great if you could think about doing off the back of this post.

  2. Go and see Karen in Edinburgh if you’re there*
  3. Remember that a healthy cervix is a happy cervix, and help Karen raise awareness of cervical cancer and gynaecological disease with her show by helping her Crowdfunding Campaign. There’s a video all about it right here. Find out more about the show on Facebook.

I saw “No More Stage 3”, a comedy show by Alistair Barrie about his wife’s run in with breast cancer the other week and at the close of the show he said “Always keep laughing. Because if you stop laughing, you stop living, and then the cancer has won”. This is very true and applies as much to Karen’s show as it did to Alistair’s. It’s also just a really good motto for life. You can swap out “cancer” for other words including “depression” “terrorists” “Conservatives” etc.,

I’m off to book my smear appointment right now, fear be damned.

*Another of my friends Katie Brennan is at Edinburgh Fringe as well, performing her show Quarter Life Crisis, so go see that too, yeah? Because I can’t and I’d like to live vicariously through you. K, thanks.

Cancerversary – One Year On

Up until a few months ago, I never even realised a “cancerversary” was a thing. But that was before I found myself immersed in the cancer community. People mark different days for their cancerversary – the day they had surgery, the day they had the first biopsies and scans, the day they started chemo, the day they finished chemo, the day they finished treatment all together…

For me, my cancerversary seems to be the day I got diagnosed. And believe it or not, we’re coming up to a year since I sat patiently in Lewisham Hospital, watching the 10 year memorial service of the 7/7 bombings. One year since the kindly surgeon in the big bow tie sat in front of me and said “you have cancer”.  One year since I said “I have breast cancer” out loud for the first time. One year since I had to tell my family, three hundred miles away, that the lump I’d found was, in fact, something to be worried about.

One year since the course of my life changed. If not forever, then temporarily at least.

I’ve been spending a lot of time trying to process the last year over recent weeks. I’ve found that, as I’m moving further and further away from my active treatment, I’m gradually coming to terms with what I’ve been through, even though I thought I was all over it before. I keep having weird flashbacks to things I’ve definitely repressed – like when my boob began leaking on the way into the office and I had to rush to the hospital to get it checked. Or when my hair fell out and I told myself it was ok. It actually, really wasn’t OK. The day I laid in the anaesthetics room waiting for my surgery, more scared than I had ever been about anything in my entire adult life but trying desperately not to cry. Trying desperately to keep my shit together.

I’ve had nightmares about cancer coming back, I still feel sick when I think of the chemo going into my veins, I have pain where my boob used to be. My body is still covered with reminders of the ravages of treatment.

Throughout treatment I was determined to make it to Glastonbury Festival 2016. I was diagnosed just a few days after we got back from Glasto last year and it quickly became my marker for recovery. I remember hearing a woman talking about her breast cancer treatment behind me in the queue for the toilet on the campsite. I wanted to turn around and hug her, tell her how incredible she was, tell her I was waiting for results and I didn’t think it was good news and I was terrified but trying to still have a good time.

Glasto this year was such hard work. Not only ‘cos of the mud (you probably heard about that though right?) but three months after finishing treatment and with the cloud of post-cancer fatigue lingering, schlepping, or rather sliding, across Worthy Farm was pretty tough. I saw barely any music this year and spent the majority of Saturday sick and sleeping in our tent. But I was so, so grateful to be there. I loved seeing all the gloriously happy and smiling faces of the other festival goers. Loved dancing into the early hours of the morning in the silent disco with three of my favourite people in the world. Loved singing along to Adele at the top of my lungs, despite the fact I’d felt horrendous for most of the day previous.

Cancer is a motherfucker. Treatment is a bloody bastard. But it’s doable. And on the days I wonder if it was all worth it, I think I’ll remember sitting on Worthy View, looking out over the festival site having dragged myself through cancer treatment and know that it was worth it.

On 7th July, I’ll be spending the day with the love of my life and eating dinner with some of the people who made my treatment so much more bearable. I’ve no idea how else I’m going to mark it. I might get a tattoo. I might go to the theatre. I might run a 10km. If it wasn’t so hot, I’d be tempted just to sit in the house in my onesie and take stock of everything. Suggestions on a postcard for how I mark it.

What a bloody year, eh?

Life on Pause

There’s been loads written over the last few years about social media and the rise of FOMO. The Fear Of Missing Out is allegedly terrorising millennials, who scroll through their social media feeds and are stricken by an intense feeling that they’re missing out on doing something awesome, while they’re sat at home twiddling their thumbs and browsing the stories of other people’s lives on their screens.

Now, I can’t say I’ve never been hit by a blast of FOMO, but it’s not something I’ve hugely battled with in my life. I do cool things. I see cool things. I’m exceptionally privileged to live in one of the best cities in the world, so even if I wasn’t doing something cool at the moment I whizzed past a friend posting about doing something awesome on the old social media, I knew I’d be doing something cool all of my own in due course. That was, of course, BC (before cancer).

I don’t remember an awful lot about the 7th July. I remember what I did before going to the hospital, I remember being nervous. I remember watching the 7/7 memorial service in the waiting room. I remember what I was wearing (Hogwarts Tshirt FTW). I remember the kindly doctor in the big bow tie when he said “there’s no easy way to say this”.

But after that moment, my life as I knew it stopped. The world kept moving around me, but my life, my plans, everything I knew was paused. Chris’ life was paused too. Indefinitely. At 26 years old, when you’ve got plans coming out of your ears, when you’ve been living life as fully and as passionately as you can, when you’ve been dreaming big and hoping for bigger, this comes as quite a shock.

And it takes quite an adjustment too. I’ve talked before about swapping nights out for early nights, delicious dinners with friends for a bowl of buttered pasta with peas in front of the telly (actually not as depressing as it sounds – and still a favourite), swapping Sri Lanka for Sarah Ward at Guy’s Hospital and finding myself crawling into bed at 9pm, drained, anxious and not ready to take on another day. I’m not sure there’s a whole lot of words that can appropriately describe how those things feel.

It’s so easy to get lost in all the things you’re missing out on. More than once I’ve felt like life has been passing me by while all of my friends have been living theirs. I’ve felt stuck, stranded. More than once I’ve identified hugely with Professor Andrew Martin in The Humans by Matt Haig (a must read if you’re a fiction fan) as an alien living in the midst of a world I didn’t really understand, finding myself lost and confused and heading to chemotherapy appointments while my colleagues got dressed up in their finery to head to the work Christmas party. More than once I’ve been infuriated at cancer for limiting my freedom to do exactly what I want. I’m stubborn and I don’t largely like being told what to do, especially not by a bunch of mutated cells. Not cool, yo.

This sounds a bit wanky, but I’ve spent a lot of time thinking about gratitude recently. Partially because of how grateful I am for the love of my friends and family during this crappy time. For the NHS who have worked to beat this bloody disease. For the love of a man I cant imagine making it through this without.

But also for things like the daffodils being in bloom. The sun on my face. The ability to dance around the room like a loon to my favourite song of the moment (DON’T ASK ME, IT’S PROBABLY ZAYN OK. I have literally never been cool). For food on the table. For a delicious hot chocolate in the best company. For Margaret Atwood. For the sound of my record player. For having primary breast cancer rather than secondary. I could go on. And on and on.

Sometimes it’s easy to lose sight of the things to be grateful for, especially on the days when you wake up and think “do I have to live with this again today?” Especially on the days you’re hyper aware of all the things you’re “missing out on” while dealing with cancer. Especially on the days you don’t really want to get up and face the world. But the reasons for gratitude are many. And they are really wonderful if I remind myself to look for them. And they make up for “missing out” on the things I think I should be doing. Most days.

Me, Myself and Cancer

Last week, for the first time in three months, I pulled on my running shoes and went out. Just after a fourth unscheduled bout of surgery and for the first time since my mastectomy, I was able to run*, and with that, I was able to temporarily forget the last three months.

I was slow – a mile took me two minutes longer than it had before surgery.  It was hard. I walked a lot and gave up after two miles. My legs aren’t as strong as they were, my chest tired easily, my boob ached and felt heavy and alien. But I did it. And I never thought I would enjoy running as much as I enjoyed that one. I’ve never appreciated my body’s ability to do it more. The feeling of doing something just for me, not for the medical team taking care of me, for the first time in three months, was the best kind of freedom. I used to hate running, but with swimming off the cards during my treatment (sob), it’s been the thing I’ve craved – for the moments of clarity that exercise offers you like nothing else.

They say that the relationship you have with yourself is the most important of all and I never feel that more than when I’m running. I’ve always had a tempestuous relationship with myself (and I know I’ve said this before) but cancer has taught me a lot of things. Even though I don’t recognise the person, bald headed, scarred, mismatched and bleary eyed, looking back at me in the mirror, I recognise a strength in myself I never knew before.

Cancer has forced me to examine the relationship I have with myself more keenly than I ever have before. Dealing with cancer isn’t just about dealing with the gruelling physical effects – the nausea, the sore mouth, the lack of appetite, the exhaustion. It’s about dealing with the bleak thoughts when there’s no-one around. It’s being blindsided by living with the fear of reoccurrences and secondaries for the rest of your life when you’re tucking into a delicious spaghetti bolognese. It’s not being overwhelmed by what the future holds, and what your treatment plan holds, and rolling with it when you’re bowled another surgical curve ball and end up spending five nights in hospital. It’s laughing when your surgeon shouts “SOMEONE GET THIS GIRL A SANDWICH” after you’ve been nil by mouth for six hours and your surgery has had to be cancelled because your white blood count is in the toilet. It’s ignoring the voice that says “is it really worth all this?”

It’s getting reacquainted with your body when it has betrayed you, and learning to trust it again. It’s about finding self confidence in the face of something utterly shit when you’ve struggled to be self confident before. It’s standing in front of the mirror and still being able to see yourself despite the unfamiliarity of the reflection you see before you. It’s watching your hair come out in clumps and crying in the shower. It’s getting used to feeling the wind on your head and having to think about putting on a cap cos your brain feels frosty.

It’s learning new limits and not being hard on yourself when being hard on yourself is all you’ve ever known. It’s knowing that you can’t push through the exhaustion this time and that’s OK. It’s telling yourself that a messy kitchen does not matter. It’s knowing that this is not forever. God – it’s talking about cancer and yourself all the bloody time and being tired, oh so tired, of it. It’s wishing cancer could be removed from your vocabulary just for 24 hours.

It’s dealing with the demons that are telling you you’re making a fuss – that you should have battened down the hatches and sat this out without talking about it. That you shouldn’t have posted the picture of your bald head, all insta’d up, cos people might think you’re just looking for attention. It’s reminding yourself that something good has to come from this. It’s not underestimating the restorative powers of 10 mins of Headspace, a few shoddy yoga poses and Beyonce.

It’s having the worst day of your life, feeling more ill than you ever have before. And waking up every day and still wanting to fight.

But it’s not bravery. Bravery takes a choice. This is just life. It’s not a case of asking myself why me, it’s “why not me?” and getting the bloody hell on with it.

*Important reminder – I’m actually a terrible runner. I kind of hate it 90% of the time and I very much doubt I’ll ever run much further than 10km. I only do it because it’s good for me. And it gives me a break from the constant wirretting in my brain. But I’d always choose to swim instead if I could.

NB – dealing with cancer is also not really caring as much as you should that the featured image of this post isn’t the right size but also not having the energy to fix it. Similarly, it’s knowing that this blog post is a real stream of consciousness that is probably really poorly written and difficult to understand but, six days post chemo, it’s just embracing it and sending a big SOZ to you guys for reading it.

Side Steps and Setbacks

I was supposed to start chemo on Friday. If there’s one thing having cancer has taught me, it’s that planning is pretty much futile. Everything changes – from the day of diagnosis, your life is taken entirely out of your hands and placed carefully into those of surgeons and doctors and you are left to rely on your body to do what you need it to.

On my birthday, Chris and I were sat in a Zipcar on the way to Longleat Safari Park when my new boob sprang a leak. Luckily for me, I hadn’t spontaneously started lactating, but the patch of skin I was struggling to heal had breached my implant. Infection is the enemy of the implant and if stuff was coming out, stuff could get in. A slightly frantic cool and aloof phone call to the breast clinic told me to carry on with my day. My BCN knew it was my birthday and as I was scheduled to have the wound stitched up the next day, there was no benefit to going into clinic. I was advised that in light of the leak, I’d probably need a new implant.

Fast forward 24 hours and the implant I had spent a while getting used to and getting to know was gone, replaced by an expander implant – one which is injected with saline to determine the size. My surgeon – who confessed I’d been giving him sleepless nights – didn’t fill the implant as much as he could to give my skin chance to heal without the weight of an implant pressing on it. My chemo was pushed back a week to 25th September and after two more nights in hospital and with another bag of my bodily fluid flung over my shoulder, I was sent on my way.

I saw my surgeon, who I think it’s important to specify is a properly top guy, just over a week later and everything was peachy keen. He said chemo could go ahead. I cheered (I know right – never thought I’d be cheering to get all that badness injected into my veins) and left with an appointment to come back for another check up pre chemo.

Wednesday, I got off the train in Farringdon ahead of the first full day at work I’d been able to manage, 8 weeks after my mastectomy and two weeks after the second surgery. My dress was sodden, my coat was drenched. Once again, I was leaking out of my basooma. I swore. Quite profusely. And burst into tears while I was waiting for my Uber to Guy’s.

Cue a distressed phonecall to my Dad (sorry Pops) and more crying in the cab (sorry Uber driver – there were lots of swears about cancer and chatting openly about my breasticle and mastectomy). I was convinced I’d need more surgery, or I wouldn’t be able to keep this implant either, that I’d have to stay flat because my body just didn’t want to play with this foreign body inside my body. My brain was buzzing with all of the worst case scenarios. But I knew, that the thing I’d been building up to for the whole week – the great unknown of chemo – was going to be pushed even further back. I’d come so close and that was the thing making me sick with tears.

At the hospital, they told me I’d burst a couple of stitches, and the reason for which was almost completely inexplicable. The two expert surgeons I had looking at me couldn’t figure out why I just wouldn’t heal in a straight forward way. So all of the saline was removed from my implant, leaving me even more lopsided than before (imagine one DD cup boob, one A cup boob and you’ll know where I’m at). Hilariously, my surgeon ended up having to squirt the saline from my implant ACROSS the room into the sink like it was a water pistol. Even when I felt more bleak than I had throughout this whole drama, I still found myself laughing. If there’s another thing I’ve learnt, it’s that cancer makes ridiculous things happen to you.

Anyway, another brief surgery, making three in less than two months, without even a local anaesthetic because (you can choose an answer) a) I’m exceptionally hardcore or b) can’t feel a bloody thing in my boob any more anyway) and I was told chemo would have to be postponed. I was sent home dejected, deflated and in the darkest mood I’ve experienced since my diagnosis.

I can’t bloody stand uncertainty and having got so close to finding out exactly how I was going to deal with chemo and then have it taken away from me made me feel empty. I didn’t want to see anyone, I didn’t want to talk to anyone, I didn’t want to eat. I just wanted to get into bed and pretend that the world wasn’t out there. It was like the darkest days of my depression but magnified and focused on one thing. It makes me feel a bit sick to think about it, even now. Even after a few good nights sleep and another date scheduled in for Friday.

It’s a weird thing this having cancer. It makes you feel all of the emotions all at once. Last week I had one of the highest moments of my diagnosis when I found out I was BRCA negative, meaning I won’t have to have another mastectomy, won’t have to have my ovaries removed and there are no implications of my diagnosis for my sister. The relief was…like nothing I’ve ever felt before. But then the next day, my stitches ruptured and the thing I’d been building up to was taken away from me and I found myself almost empty of anything other than a crushing sadness.

But that sadness passed. And a new day came (cliched but true – that’s how the universe works yo). And a whole new host of emotions visited. And a new plan was made. My bleak mood didn’t hang around. I got up, dusted myself off, and carried on with this experience and hopefully on Friday, the great unknown will not be so unknown any more.

I don’t want to be a person who quotes Rumi on their blog, but here’s a Rumi quote I’m posting. It’s never seemed more relevant to my life. Full poem here.