So – here’s an understatement: I’ve had a spicy few months and some spicier ones to come. Many of you are aware but many of you will be as baffled by this as when I found out in November. I think it’s taken five weeks of wandering around Nottingham City Hospital in my pyjamas for me not to be a lukewarm mess about everything.
Back in early November I drove down to Nottingham for what I thought was going to be unexciting results from a biopsy. Turns out the little lump on my lower back that I’ve had since I was a teenager is neither little nor unexciting. The lump that I thought was the size of a Creme Egg is in fact a 13cm long myxoid liposarcoma nestled in the fat of my right lower back. I hear you asking “wait, is that cancer?!” as I also asked in a baffled voice to the consultant. Yeah, it is.
Absolute confusion was my initial reaction, then I had a cry or six and then I asked many questions about lasers and by the time I was in the car park I was making jokes about having a demon on my back. Overall I felt strange and young and — as I am my mother’s daughter — pragmatic.
Skip forward to crying for my Mom on a forecourt off the A46, having a conversation over A Cup Of Tea™ with my boss and resisting the urge to send “guess which binch has caaanccceerrr” to the group chat — I’d had quite an exhausting rollercoaster of a November 6th. I spent that first night after finding out curled up on the sofa watching comfort TV (a YouTube series about train disasters) and wondering which was worse news that day… Trump winning the election or my sarcoma.
I think it was probably Trump.
Butt demon
They have no idea how long the lil guy’s been cancerous — there’s no way of knowing apparently — but the fact that it’s not spread anywhere else is a great comfort. The fact that I had to wait an entire week after my full body MRI to find that out was not so comforting.
I would recommend a full body MRI by the way. You get all cozied up in a plastic cage for half an hour or so of Tube Time. There’s a cage over your face, one over your torso and a bizarre contraption between and over your legs all to keep you still. It’s not a glamorous position to wrangle yourself into but thankfully myself and my butt demon have little shame (foreshadowing) so I found it a rather pleasant experience in spite of the radio station I was given playing a feature on assisted dying. Not now, Classic FM, not now!
Once the MRI results came through I was given the go ahead for radiotherapy. The plan was to kill off Monsieur Lump before scooping it out, sewing me up and sending me on my merry way. I have a MDT (multi-disciplinary team) who look after me including a variety of incredible nurse specialists who put up so wonderfully with my random text messages, a team of surgeons who I seem to be given at random, a radiotherapy consultant who seemed baffled by my excitable disposition and poor taste jokes1 (she’s used to me now and a gem) and a physio who might be my new favourite person.
I was summoned to Nottingham (This is a trend. I am getting very used to Nottingham now.) for a CT scan first and then, at a later date, my radiotherapy planning scan with tattoos which are used to position me in the radiotherapy machine. My CT scan set the tone for so many of my interactions with healthcare workers. The nurse tried to calm my about-to-put-a-canula-in-my-arm anxiety with “It’s just like having bloods done”. Which didn’t work. Because I’ve never had bloods done. She was baffled by this; as were both other healthcare workers and friends when it came up. How have you never had bloods done? I started health issues on hard mode, okay?? It’s all been ear ache and plantar fasciitis until the whole cancer nonsense. I had a lovely time in the scanner as always. I just like lying down in cool looking machines, okay?
My next chance to lie down in a cool machine was my radiotherapy planning scan. I was excited for this one, I would be getting little tattoos which they use to line up the lasers. This was all very exciting to me. So exciting that I hadn’t thought about much else regarding the radiotherapy. It was all tattoos and lasers. Exciting! So there I am, lying down on the scanner thinking “oh, I’m going to be lying on my back, I guess that makes sense, the bed won’t stop the lasers.” What I didn’t do was follow that thought further. For example, where are the tattoos going to be? I thought they’d be on my back triangulating the lump.
Reader, the tattoos are NOT on my back.
I’d brought my housemate Kaz along to this appointment. She’s a gem, an angel, my paladin with a shining SUV steed. She was sat at the side when the radiographers were getting me into position.
“Now, can you pull your trousers down a little?”
No problem, I pulled my joggers down a smidge to reveal the lump, squished against the plastic bed. I was used to flashing the shadow of my butt crack at professionals at this point. When your spotlight-stealing lump is just above your butt this is just something that you have to do. (more foreshadowing)
“A little bit more”
Um, okay, the lump’s already out. I scoot them further down.
“A bit more”
Wait. This is pube territory now. Kaz doesn’t need this. She’s a sweet flower who does not need to know anything about my garden. My panicked expression was all that was needed.
“Do you want your friend to leave?”
I nodded rapidly and, for some reason, apologised to Kaz as she left the room.
There I am, gerning at the radiographers over me, trousers around my thighs and wondering how the hell I got this far without asking WHERE THE DAMN TATTOOS WILL BE. I have three little tattoos now. One on each hip. And one in the middle. Right in the pubes. A little dot deep in the forest. Hidden in the hedge of my nethers. Tucked in the tangle of my carpeted downstairs. Bang in the middle of my bush.
It’s hard to have a CT scan when you’re trying not to shake with laughter.
Not The Tattoos, but a tattoo on my ankle that I got done by Lientie Tattoos as a little “You’ve Got Cancer!” present to myself. His name is Judas and he’s a good boy.
Let’s fast forward a little bit. Work is strange, life is strange, telling people you have cancer is strange and horrible and I hate it. That’s why I’ve put nothing public until now. It’s a horrible thing to drop on someone and when you’re already in the “I guess this is my life now” stage you find yourself apologising. If someone apologised to me for having cancer I would be baffled and horrified. I’ve still ended up apologising for it though. Doesn’t mean I haven’t dropped the occasional “I have cancer 👍” when someone’s asked me how I am.
By the time I started my radiotherapy course I’d only actually had two appointments with my consultants. One, the diagnosis, when a kind surgeon dropped the news and left me with a nurse because surgeons aren’t exactly good at dealing with crying people. Two, the radiotherapy appointment, when I got to meet my oncologist and confused her by not being a crying person. Everything was moving so quickly and I was happily rolling with it. (foreshadowing but it’s not about my pubes this time) Thanks, NHS, you’re amazing.
I rocked up to Nottingham City Hospital on the 16th December with several suitcases and a bag of Christmas presents because I wouldn’t be home again until New Year’s Eve. Treatments took about ten minutes and I’d have them Monday-Friday (excluding bank holidays) for five weeks. Throughout Christmas I was expecting to be knackered. Fatigue is The big side effect and I’ve seen how it can affect a person. What I forgot was that that person was getting radiotherapy to their brain and I was actually completely normal energy-wise until mid January. So I’m being carted back and forth from home to the hospital to my mom’s to my grandad’s to the hospital for a very chaotic couple of weeks and then suddenly it’s New Year’s Eve and I’m feeling entirely normal and drinking prosecco with my beloved friends until two in the morning.
Living in a hospital Monday-Friday is a weird experience, especially when you don’t feel ill in the slightest. I was working remotely, sometimes jumping on the bus to Nottingham city centre so I could loiter in a Starbucks. Sometimes rocking up to a pub in Notts in the evening or a poetry night. Walking tipsy from a bus stop hits different when you’re arriving back to a hospital campus.
The hospital hotel was like a tiny travellodge but with better food and some of the staff think you’re also staff even when you’re in your pyjamas.
Maggie’s, a cancer charity that had a centre on the campus, was a blessing whilst I was there. I joined a creative writing group and it was so valuable to find some genuine joy amidst this nonsense. I got back into writing poetry again and I also found the young person’s cancer group at the centre. Having a group of kind and hilarious people also going through The Nonsense to speak to was amazing. People don’t expect the chipper 30-odd year old to have cancer and that’s just something you have to deal with. Most people at the centre are older, which makes sense, more time alive means more time for your cells to do the nonsense. Everyone knows that young people can get cancer but between me and a retiree? You’re always going to assume it’s the retiree. Once I went to an art group and someone thought I was a student (shout out to Penny, a delightful woman who jumped to correct them) and I’m sure a couple of the volunteers thought I was just there for the free cups of tea.
There’s “getting on” and then there’s genuinely having fun and wonderful experiences whilst you’re spending five weeks getting zapped. All my love and thanks to Gail and Cullen and all the staff at Maggie’s as well as Gobs Collective (a Nottingham poetry group) who know how to show a Lincolnite2 the poetic heart of Nottingham.
The linear accelerator zapper.
Five weeks. Wander down to radiotherapy, lie down, get my muff out, the radiographers use the tattoos and lasers to prod me into position whilst peering ever so politely at my mons pubis, the zappy lasers are sent in to do their work, trousers up, head back to the hotel. Next day, walk to radiotherapy, muff out, lasers in, entertain myself for the rest of the day. Walk, muff out, lasers in, rinse and repeat. A surreal five weeks.
I was cheery throughout all of it. The radiographers were a delight, I’d laugh and joke with them, I had a couple of appointments with my oncologist with little to no side effects to report and by the time I got to my last appointment everyone was happy with how the treatment had gone. I was great at getting zapped. I’m such a good cancer patient. I’m so well behaved. I am forever the teacher’s pet.
The last day wasn’t so cheery. I had my treatment in the morning and they squeezed in my surgery consultation, my pre-ops and baby’s first bloods so I wouldn’t have to come back down to Nottingham too many times. This, however, was the first day where I had to wait and bloody hell I had to wait. I was waiting for over an hour for each appointment and by the time I was waiting for my bloods I was just blubbing in a waiting room wanting McDonald’s.
Apparently no matter how clearly you say “I don’t know any details” “I’ve only met a member of the surgical team once” “I’ve never had any kind of surgery or major health issue before” that won’t stop a talented-in-all-ways-but-with-people surgeon from staring at you whilst you’re crying and saying “Well, you did know you were having surgery.” Yes, Ms Fancypants. I knew I was “having surgery”. Those two words summed up the information I had. Getting the entire thing explained in a confusing manner was going to stress me out and it sure did. No neat order of “This is what we hope we’ll be able to do” through to “this is the worst case scenario”. Just “oh yeah we might not be able to close the wound” “but maybe we will and it’ll be really tight” (it was unclear which of these was better) “I can’t give you a time scale” “we do this every day don’t worry”. Just give me a bullet point list, damn it. Every anxious feeling bubbled up in that meeting like I’d been saving them up between joking with radiographers and writing poetry. And the one time I’m an anxious mess? I’m faced with a stony faced surgeon and a nurse I’d only just met. I don’t think I’ve ever been so grateful to see someone when my physio and nurse specialist appeared, finally friendly faces who didn’t know me only as Crying Fat Bird.
Between nurses being amazing and the surgeon being a much better letter writer than talker I finally can picture what my post-surgery life is going to look like. But I couldn’t see that during that meeting. All I could see was me wandering around with a gaping hole in my back for months. Wound healing is apparently 4-6 weeks, so that’s nice. Wouldn’t that have been a nice thing to tell me Ms Pantsy-Fants??? I don’t get a time scale when I explicitly ask you but I get a genuinely comforting “within 6 weeks to 3 months hopefully everything should be sorted” in the letter. Maybe surgeons are only capable of being kind when you’re unconscious or 40 miles away.
Anyway. I’m over it. Stab me up, Ms Pants. Bring it the fuck on.
My artistic representation of the surgery. They “don’t want to see” the tumour when they take it out so they take out a margin around it. They won’t know how they’ll close it up until they’re there with their knives out and I’m there with my innards out. My Aunt says this looks like a vanilla slice.
26th February. That’s the stabbing. The Brickening. Slice and dice. Then I’m off work and wandering around my house banned from picking up the cat and giving him a little smooch on the forehead. Banned from bending. Banned from driving. Banned from sitting for too long. Not banned from driving Kaz insane with my nonsense. Not banned from terrible jokes about my gaping wound. Not banned from pottering about in my pyjamas. In fact, pottering around in my pyjamas is going to be 90% of my activities.
I wasn’t expecting to write 2000 words (2452 and counting) about this but I’ve found that telling people and people not knowing are equally hard. How do you explain how you feel about all this? About the shit you’re going through? If you can’t tell it overly verbosely with an anecdote about getting a tattoo on your cooch? So. If you’ve been confused about why I’m always in Nottingham recently or I’ve responded to “how are you” in a cryptic way then now you know why.
On my last day of radiotherapy with my favourite Cool Machine.