Harriet shares her story. TW: cancer, surgery.
"I didn’t feel like my cancer was cancerous enough."
At my first consultation, I sat there alone, because of covid, and this lovely doctor barely even glanced at the mole on my foot before calling in somebody to clear his schedule. Within the next few hours, they’d taken it. No time to say goodbye, no time to process the fact that maybe they weren’t overreacting. I was too preoccupied with embarrassment after passing out and throwing up all over the place, to process what was going on. I was told to wait for their call as they sent the little fucker off to be tested.
For the few weeks before the call, I was impossible. The weather was nice, and I was stuck inside doing fucking jigsaws while everyone else had a nice time. The painkillers I was on turned me into a right bitch, which didn’t help. I remember the moment of realisation on a day that I’d managed to drag my sorry ass out to the garden, my sister tentatively launched a packet of chocolate buttons at me from a safe distance and retreated back inside to safety. For the sake of everyone around me, I stopped taking those pain meds immediately.
The call came. They asked me to go in, as they weren’t allowed to give results over the phone. Odd. But ok, still sure it was fine, I headed up to the hospital.
Off to get the results. Another appointment alone, cheers ‘Rona. As I sat there in the stuffy little office, I thought it was odd that I wasn’t alone with the doctor. From what I gathered from TV shows, and films, there was no need for a nurse to sit in with us while we had a little chat about how there was nothing to worry about. Not a reliable source to make that assumption on my part I suppose, so ah well, sensitive topic, I was sure it was fine.
Turns out, it wasn’t fine. Melanoma 1A. Skin Cancer. Wonderful. I’d heard of Melanoma. The worst kind. The deadliest. The C word itself was bad enough. I glazed over and just sat there. How could they sit there so calmly and all matter-of-fact, while inside my head big red flashing lights and sirens were going off, drowning out their medical drivel. The only thing keeping my focus was the thought of what might be going through their heads. They were probably dumbfounded by my ignorance. In a time when I should have been worrying about being put in the same sentence as the big scary C word, I was worrying about what these health care professionals thought about me. I was offered a handbook of everything they’d just told me, which I gladly took, because I hadn’t heard what they’d said past “Cancer”.
I was angry. Angry at Covid and the fact that people like me had to go through this bullshit without having someone’s hand to hold. Angry that it happened to me. I’m a good person and thought it was so unjust that I’d been burdened with this. Angry that I was scared to tell people the results, because I was more worried about how they would take the news, than I was for getting it. Angry that I’d been naïve enough to think it was nothing. Just angry. And with anger comes tears. And once those floodgates open there’s no closing them. Walking out of the hospital, I could have won a bloody Oscar. This was nowhere near the delicate cry, like in films. The dainty kind that makes handsome men whip out their handkerchiefs, and kind women sit and hold your hand and tell you it’s all going to be ok. No. This was full on red face and snot crying. The type where people cross the street to avoid you.
The anger inside me brought on the fear. What if I got really sick? What if all these solutions they were offering didn’t work? What if I had to change my entire lifestyle to keep myself safe? What if I lost my hair? Without my hair how were people going to recognise me? Seeing as it makes up at least 30% of my personality, I’d have to find something new to make me interesting. I hadn’t been able to listen to all the information they spurted at me, so then I worried about asking stupid questions and wasting the doctor’s time. A lot of the worries were irrational, but they were all real. When you can’t find the line anymore between rational and irrational questions, it gets really scary. Like one of those dreams where you’re being sucked into a black hole, everything’s merging and spinning. Shit, that makes you dizzy and awakens your temporarily tamed anxiety. Do not fucking faint. Don’t embarrass yourself by crumpling onto the pavement in a snotty, weepy mess. I didn’t, thank God. But part of me wonders if I had, would it have made it easier? A few seconds of silence from the overwhelming amount of crappy information now residing in my head, sounded pretty refreshing.
I’m not gonna lie, it was all very shit.
I think I held it together reasonably well. I don’t know why I was so scared to show people how I was really feeling. Worried they’d look at me differently I suppose. Didn’t want the sad looks and head tilts. I finally caved when we took my sister for her first outdoor climb. Something I was eager to get back into once I had the stitches pulled out. I went to start a route that ordinarily I would have found nice and easy. But the pain in my foot from the pressure was unbearable. I felt like I’d finally reached my limit, and I burst. My words rushed out, tripping over each other as the panic finally took over. Between choked back sobs I blurted out how scared I was that the second operation was going to be worse. that the recovery time would be longer. That I would have to face more people asking why my foot was all bandaged up. How scared I was for what my future looked like, the appointments, the constant fear that it would come back. How alone I felt, because nobody around me really understood. How I was frustrated that my foot was now limiting me from doing the things I loved. It was a relief to offload, but I felt guilty to burden her with my shit. People around me had been honest with me the whole time as to how hard it was for them, and I didn’t want to make it worse.
Second operation. Alone again. They had the sense to put me under for this one.
The first thing I thought about when I came to, was the time. I remember being annoyed at the nurses for fussing with tubes instead of just telling me the fucking time. Weird. What was that about?
I unwittingly practised my poker face as they sent me on my merry way without pain meds, as Sam wheeled me to the car. Other than me giggling while bouncing over the cobbles, from the outside, to him, all seemed quite calm and normal. How very wrong he was. Apparently, I talked non-stop on the way back about God knows what. I waved at all the lorry drivers we overtook. They probably thought I was nuts, but honked their horns anyway. So, I was the real winner. Bumping into friends in the supermarket car park was a whole other experience. I don’t think I’ve ever been as surprised in my life to see someone in such a normal setting, but I found it hysterical. What a hoot! I didn’t expect to be as loopy as I was for so long. But it was fine. I didn’t remember much. The anaesthetic lasted a few days, so I figured all the fuss had been about nothing. I just fell in and out of loopy dreams, and half watched movies all day. Not too shabby after all. Dunno what all the fuss was about.
When the anaesthetic wore off, I quickly realised I’d been chewed up and spat into hell. The lack of painkillers made sure of that. I hadn’t even considered the amount of pain I might be in. Yeah, the first operation hurt a lot, but I was preoccupied with denial and feeling sorry for myself. This was something else entirely.
It took a lot longer to recover than I expected. What they don’t tell you is how every single move you make affects your foot. You take one step and you can feel the wound pulling apart. You readjust on the sofa, which then disturbs flesh within and you feel it trying to force its way out. This makes you vomit. Then the vomiting makes you worry. Shit, did they get it all? I was expecting to be back at work within a month. What a joke. Not only were they waiting for my wound to heal, they were preempting the inevitable breakdowns that followed. Prevention, not cure. Smart. Let’s support this gal now before she cracks. And boy did I crack.
‘You’re in hell. And nobody around you realises.’
There’s nothing more dehumanising than having to be showered down like a dog, because you can’t stand for long without feeling the blood trying to ooze its way out between the stitches. The permanent dent in the sofa where you’ve been stuck for days makes you feel like a useless lump. The first outing, to the supermarket because that’s as far as you can go without being a massive burden to the people you care about. You’re in hell. And nobody around you realises. So people carry on saying the things that make themselves feel like they’ve helped, so they can fuck off and leave you all alone. They justify it by convincing themselves they’ve ticked the box to be a good fucking person, by making you a cup of fucking tea. Which obviously I was grateful for, but I still felt unwanted. Unimportant.
Unworthy of the support I thought I deserved. Who can honestly turn their back on someone they give a shit about during the scariest part of their lives? It was hard to wrap my head around. I started feeling like maybe I wasn’t as big a part of people’s lives as I thought. That I maybe wasn't as good a person as I initially thought, maybe I'd brought it on myself, maybe I wasn’t deserving of their care. The conflict of understanding why they left me alone, versus what I’d do if I was in their position tore me apart. I tried to make excuses for their reactions, but I kept thinking back to how supportive everyone had been for other people in times of trouble, and couldn’t work out why it was different when it was me that needed some support.
The guilt of being unable to look after myself and the realisation that people are getting bored of looking after me was horrible. But I understood. Because who wouldn’t get bored with it? It doesn’t matter how much you love someone, if they’re stuck on the sofa and not in a great place, of course you’re gonna wanna go off and do fun things with literally anyone else. The strain of having to keep up the façade of being ok was exhausting, because you really do understand how they feel, but feel so empty because they clearly have no idea how you feel.
‘It felt like people were listening, but not hearing me’
On the rare occasion I did mention how I felt, that I was scared of what might happen next, that I was in pain, that my mental health had just taken a big old leap into oblivion, I was met with a “You’ll be fine, don’t worry.” A response like that when I finally opened up feels like such a cop out. When I finally swallowed my pride and plucked up the courage to reach out and voice that I needed help, that I was in a really dark place and didn’t know what to do, I was met with turned backs, anger and neglect. The shock of those reactions left me feeling like I’d crashed through rock bottom and was just free falling with nothing and nobody there to catch me. Realistically I knew that I was most likely going to be fine, I knew that things would get better, but that didn’t stop me being scared. All I needed was someone to turn around and validate my fears. It felt like people were listening, but not hearing me. It was so isolating. I noticed myself slipping into a deafening silence, where nobody knew anymore how I was actually feeling. Where you could see them breathing a sigh of relief where they could go back to making me a cup of tea and feel like they’ve helped. Where they don’t have to acknowledge any of the heavier stuff and still pat themselves on the back and tell people they did a good job.
Fuck. I don’t think I’ve ever felt so alone in my life. It was a really dark place for my mind to be. And when nobody understands how low you’re feeling, and there’s nobody around you to reassure you otherwise, horrible things begin to reside in your mind. And when the self soothing stops working, so you turn to those closest to you and they promptly turn away, why would you believe you deserve anything better?
Usually somebody can try to relate to you. You feel anxious? Everybody’s experienced a level of it. You feel down? Everybody has felt low and can relate somehow. When you have cancer. Who do you turn to? In my mind it wasn’t a bad enough type to whine to someone with worse cancer than me. That’s why I avoided so many of the meet ups. Because I didn’t feel like my cancer was cancerous enough. Fucking stupid. Cancer is Cancer. I had every right to be there. It might have even helped.
I felt so alone. I powered through and said the right things where I could. But all I wanted to do was scream “why aren’t you there for me?”. I would drop everything to sit with anyone I cared about in this position. Why have I barely seen anyone? Why am I feeling this alone? Completely alone. Looking back, I’m really not quite sure how I made it out the other end without being a shell of who I used to be. I’m not sure if it was sheer determination, stubbornness, or just a fluke.
The support from the hospital was mediocre at best. Once they’d patched me up and sent me on my way, that was pretty much it. No pain meds. No reassurance. No information. Just a boot and a gaping hole in my foot. But it was fine. Because I had been assigned a cancer support worker. If the definition of “support” was ignoring calls, snarky emails, victim blaming and patronising, then she was just that. The worst was when she sat in during my check-up’s. I would ask the doctor medical questions, and she would cut across him and give her opinion instead. The absurdity of it made me audibly laugh at one point, when the poor doctor's face froze when he was cut across mid-sentence, because she thought she knew better. They stood there thinking, “Well that’s 8 years of medical training down the drain. This mouthy bat clearly has it all figured out.”.
The best support came from charities.
Young Lives Against Cancer was by far the best one. They got in touch, they didn’t bombard me with information. They were amazing. My case was taken by the manager as she lives “nearby”. She didn’t. Not really. But she gave a shit about me. Or at least was good enough at her job to have me fooled. She was amazing. She had my back, liasing with the hospital when bloody- let’s call her Jill, bloody Jill wasn’t doing her job. She met with me in person when Covid allowed it and made sure I was as happy as I could be, providing more support than her job title dictated. We would sit in a local café and chat about music, and concerts, and travelling. She’d talk to me about other people in similar positions to me and reassure me when I felt guilty for receiving help. She made me feel more cared for and valued than anyone else had. She was amazing. If Jesus was a woman named Rachel, then she was Jesus.
I eventually received the “all clear” which was bloody brilliant. I cried after that appointment. The relief was unreal. When they readily remind you that your chances of getting it again have now increased by 30%, it’s not something you can usually easily push to the back of your mind, but in that moment I didn’t care. I was free.
The next step post recovery was trying to get my life back on track. Most of the time everything went well. Building feeling and movement was a long process, and it’s still going, but it’s going well. I was told it was unlikely I’d get the full range of movement and flexibility back, but I’ve worked hard and I’m pretty damn close. This doesn’t mean it’s smooth sailing. When I push myself too far, or get too cold, the scar gets angry and blotchy to remind me it’s there. Every now and then I notice a mole I hadn’t before, and the obsessing starts. You begin checking all the time, too often. Which triggers anxiety. This triggers the panic that if I get it again, it could be worse. But we’ll cross that bridge if we get to it, and that part it’s getting a lot easier to rationalise.
The worst part these days isn’t actually the fear of it coming back, it’s the fear of going through it alone again. The fear that people will react exactly the same way as last time, and leave me by myself. The fear that I will start losing myself, and struggle to reassure myself that I do matter, when the people I expect to make me feel worthy fail to do so. But I’m stronger now. I know what I deserve, I’m not second guessing my worth. I am great, and I deserve the love and support I failed to obtain last time.
Now if you’re still with me at this point, I want to make sure you understand, this isn’t a sob story. I’m not looking for pity, or head tilts. I’m looking to make you realise Cancer is real. And it’s not picky with who it fucks with. I never expected to be the person telling the story, nor did I want to be. But here I am. Being 100% honest with you, so that you go and do your check-ups. That you talk to a doctor if you’re concerned about anything. And if you’re also going through it, or something similar, you are not alone. You are loved and supported, and you deserve all the answers to all the questions you have. So, I’m urging you to be assertive, to bombard your support workers and doctors with questions, no matter how silly they seem. To push for what you need, and to put yourself first. You’re going to need the help and support, so take it. Push aside your pride and guilt and let someone take care of you.