Alt text: A coloured photo selfie of me – a white woman with blond hair, wearing black-rimmed glasses, a Perspex protective visor with a white, plastic headband, a face mask designed in the colours & shapes of the ‘Day of the Dead,’ a long, pink scarf and a black puffa jacket with white-coloured hearts on it. I’m on a cobbled towpath & behind me is a long, brightly coloured boat called the ‘May Green.’ It’s covered in bright, metallic flowers & painted in vibrant rainbow colours. The boat is a restaurant with a lower deck (indoors) & an upper deck (outdoors).
A whole year ago today (on the 10th March 2020), I was diagnosed with early-stage breast cancer. Now I’m sitting here (on the 10th March 2021), having just received the news that my annual mammogram was “normal.” As a disabled person, I’d usually recoil at the word “normal”, but for once, I’m overwhelmed with joy that I’m normal! The rush of relief that I got when I read the confirmation letter was extraordinary.
I’m so proud of myself for getting through the first year of treatment. I’m so glad that I was surrounded by amazing family, friends, my personal care assistants & my colleagues – when I say surrounded, it’s been by virtual means, but believe me when I say the love just flowed out of the phone & laptop screens. Their laughter & positivity kept me going. I’m also so happy that I live with my boyfriend; he’s more commonly known as ‘Im Indoors.’ He’s funny, creative, gentle, selfless & exceptionally kind; riding the #Lockdown by my side whatever it’s thrown at the two of us.
I can’t actually believe that I got through the first year of treatment with an all-clear. I was facing many hurdles & complications both in surgery & treatment because of my impairment – there was the question mark about whether I’m receiving enough treatment to keep recurrent breast cancer at bay (this still hangs over me & I may be changing treatments as soon as this spring). Then all the hurdles & complications because of the impact of COVID-19 on the healthcare system – my surgery was delayed for 4 months, the cancer only being kept at bay by tamoxifen, which thankfully has worked. On top of that, I caught COVID-19 twice, despite shielding for a year. But I still got through my first year.
I definitely have more than 9 lives.
Having spent years in hospitals & with GP’s, you’d think I’d be used to waiting by now, but in general, I’m a very impatient person. I’ve done more than my fair share of waiting over the past year – waiting for appointments; on hold to speak with my nurse; waiting to see if the #Lockdown shielding restrictions will be extended; waiting on a lull in COVID-19 hospital admissions so I could have my life-saving surgery.
However, there is a particular type of waiting when it comes to any scans related to cancer. I think that most cancer patients would agree that you’re only as good as your last scan result. This type of waiting is anxiety-inducing to the point of gut-wrenching, nauseous turmoil, where your mind races & flips you into several different reality-bending scenarios at once. Your body shakes (at the appointment where I was first diagnosed, I had to fold my legs away from my wheelchair because they were rattling so audibly against it sides). At best, you try to crack some jokes, most of them go unheard (perhaps those jokes were in my head & not said aloud?), at worst your tears are silent as you wait in shock. Safe to say that it’s a horrific experience.
But those seemingly never-ending waits make the relief of getting the all-clear all so sweeter.
I’m unable to work out which of the recent waiting experiences I had was the worst. It’s probably waiting for the CT scans & the bone scans from last July. At my surgery, a small cancer was discovered in one of my lymph nodes & that immediately triggers the other scans to see if the cancer has spread anywhere else. Face-to-face with my oncologist with the results, I almost blurted out “hey, may be don’t tell me, don’t ruin my life, let me go on in blissful ignorance until I die one day.” Interestingly, she started off by explaining the treatments & then remembered to say, “oh your scans were clear by the way!” It’s not a criticism of her, just interesting that she appeared to think that I wouldn’t be worried by the results being of any other outcome than a positive one.
Or the other wait which sticks in my mind on the operating table. Most of my friends, both disabled & non, think that counting down until you pass out from the anaesthetic is a great feeling. I don’t. I positively hate this. It’s mainly because I’ve got dodgy lungs & as this was the longest operation (90 minutes) that I’d had in years, I was hanging onto keeping awake for as long as I could. Typical me, I came round completely fine a few hours later, no breathing equipment needed.
But back to the happiness because I am delirious with happiness! The “normal” (normal, me, normal, who’d have thought!) scan results came in the middle of what I’ll look back on as one of the best weeks of my entire life. I got my first COVID-19 jab (I noted that they’d called upon the army to administer the vaccinations, we’re obviously a rowdy lot in North Ken(sington) so I’m on the first rung to freedom. I returned to the charity that I founded (Attitude is Everything) – albeit still working remotely, but very glad to be in the thick of conversations around supporting the recovery of live music & disabled people coming back to it, & not having endless discussions centred on cancer.
But best of all, I appeared on the first episode of the new series of Grayson’s Art Club with my conceptual art piece “The Smells of my Family.”
I’d watched the first series & it had really calmed me down, helping me make sense of my collapsing world. I loved all the narratives about the artwork & the artists that Grayson brought together. Interestingly, I’ve observed that there are quite a few disabled people and those with long term health conditions featured on the show. Where funders have poured money into schemes and programmes to support disabled artists, here’s Grayson just being inclusive by nature & thus supporting the work of disabled artists on a show which goes out to millions, which I think is fabulous.
At the same time as watching the first series, I did a few themes until I got sick through surgery & treatment, but I continued to think about creating work. Then through the challenges of 64 Million Artists & my Art Therapy sessions, I started making art. Anyway, these new adventures in art led me to submitting a piece for the ‘Family’ theme to Grayson’s Art Club. Basically, triggered by an idea from 64 Million Artists, I expanded the piece that I’d made about bottling up all the smells of my favourite person (‘Im Indoors’), to bottling up the smells of all my family members. I hadn’t seen most of my family for over a year, unless it was through a phone screen. I needed to connect with them on a deeper level & often smells are a great way of evoking powerful memories (although, ironically, my smell still hasn’t come back after my latest spell of COVID). I messaged them, saying I was doing an art project & I needed to know what their favourite smells were. I had to chase them a few times (they’ve never taken me seriously as an artist, huh! 😉 & my sister Lou forgot so she just made a calculated guess for what my nieces and nephew would say. Being the piss-taker that she is, she put Lynx deodorant for my 13-year-old nephew! My brother Liam & ‘Im Indoors’ both chose lavender (must be the favourite smell of star sign Leo’s) so I made Liam choose something else – he chose the smell of trainers having worked in a sports shop as his Saturday job. My brother Pieter choose the smell of Sunderland AFC winning which we’d all agree, including him, is a rare smell & marked as such on the label.
It was my dad’s choice that was my favourite & it’s very poignant for these times – he texted me to say, “I’ve thought a lot about all the usual, but decided that my current favourite smell is the smell of life.”
So, I labelled up different sized & coloured jars & bottles with all the pretend smells & the actual names of my family, provided a short written piece & accompanying film to describe my work & why I’d made it, & pressed the submission button.
About a week (may-be it was less?) later, a got a call from a researcher, Adam, who is part of the Grayson’s Art Club team & we got talking about my artwork & me – in fact, he was so relaxed & encouraging towards me, I think I gave him my whole life story (sorry Adam, I’m from Essex, we do love a natter!)
A few days after speaking with Adam, I was on the Zoom with Grayson himself, discussing my artwork & all about the circumstances leading to the creation of it. Grayson was as lovely, funny, friendly & kind as you’d all imagine him to be, & more. About a minute in, I became really nervous, but he was so relaxed, which calmed me, & then I just chatted away. We had a much longer conversation than was edited into the programme & I want to relay just how empathetic & compassionate he was when I told him about being disabled & having cancer. I really, really appreciated this.
I waited a few days to see if I was going to make the edit, & I was excited to hear that I did, & then I waited for the programme to go out, without telling anyone except three people who were either at home with me when the call came in or needed to know (my new line manager in case she thought I was going to bring our charity into disrepute!) It was so much fun surprising everyone!
I’m giving away a spoiler now for those who haven’t seen it, but at the end, Grayson asks me if I’d let him have my work for his exhibition. I was thrilled.
Not only has Grayson given me the opportunity to be in an art exhibition, but he’s also helped me turn a mind bendingly awful situation, into a positive one, for which I’ll be externally grateful.
Alt text: A coloured photo of my conceptual artwork submitted to grayson’s art club. Different sized & coloured bottles & jars are laid out on an A3 art pad, labelled in black capital letters with their pretend smells & the names of each family member. some of the jars & bottles are decorated with ribbons. The backdrop is a white ventian blind which remains closed.