Trigger warning: this blog often contains details about the effects of cancer treatments & my emotions about the difficult decisions that I’m faced with, as well as the emotional & physical impact of living with a cancer diagnosis.
Alt Text: A small painting of mine in inks and watercolours of the part of an arm just above the elbow. There is a ‘Picc Line’ inserted into the skin and a large plaster (partly transparent so tiny amounts of bleeding can be seen) is holding the cannula in place. Various tubes trail from theContinue reading “Night At The ICU”
It’s been just over year since my Breast Cancer surgery, and I’m in a period of reflection. I’ve often joked that I have more than 9 lives. Then I had an idea. Why don’t I attempt to tell my story using 9 photos? Photo 1: Whilst this isn’t the greatest of shots, it gives aContinue reading “9 Photos, 9 Lives.”
Alt text: An edited black & white image of a hospital room containing radiotherapy equipment – the table, arm cuffs & a special piece of equipment – similar to a weatherproof sailing bag, moulded to my shape – which held me in position for the treatment. Beam me up: 6 weeks after having breast cancerContinue reading “Beam me up”
This is my first blog and it’s about my time in #Lockdown.
I Hate Staying In
I turn 50 in less than a week. For the first time in my life, I find myself excluded from society.
Given the choice, I’d go out every single night of the week. If you were to describe me as a professional lush, I wouldn’t be at all offended. My career revolves around my social life.
I work in live music and the creative industries. It’s brilliant. There are at least 3 events a week and I’m never short of a weekend invitation. But on 13th March 2020 my life came to an abrupt halt. It wasn’t only because of COVID-19. I was diagnosed with Breast Cancer and because I already have an impairment which restricts my lungs, I was immediately placed into the “extremely clinical vulnerable” category. I’ve been physically disabled all my life and yet I’ve never thought of myself as “vulnerable.”
The Breast Cancer Team rang me to tell me to stay in for the foreseeable future. Typically, I insisted that I went out “just one more time.” My brother was playing a gig at The Vaults with ‘Cyro and the Drag Tingz’ and as I was the only family member with a ticket, I didn’t want to let him down. 13th March 2020 turned out to be my best and last true party night of 2020.
As a small kid, I didn’t stay home. I’d sit on our stairs, waiting for the neighbourhood to come calling, and then we’d go out in a big gang over the bridle path to create dens. My mum called it “raking the streets.”
I didn’t stay in as a teenager either. At 16, my Disability Allowance came directly to me. Every month, I’d rush up to the Post Office where I was handed a fat bunch of banknotes. I’d meet my best friend at the station, and we’d jump on the train, hurtling away from staid suburbia and into the chaos of the city. All my allowance was spent in one hit in the little independent record shops around Soho.
The best time of my life was academic year 1991 – 1992. I deliberately chose languages at degree level, so I’d get 6 months living in France and Germany. Our lecturers advised us to “get to the heart of the culture and the people.” There were many bars in Toulouse, Nice, Marburg, Frankfurt, and Cologne to fully immerse myself in.
For 30 years I’ve partied my life away and now I’ve been told to stay in. Who in their right mind would want to do that? Why would I want to stay home when there are so many beautiful bands out there, so much raving to do, so many coffee shops and pubs in which to put the world to rights?
Also, who wants to restrict themselves to mixing with six family members and friends? I’ve got friends and family all over the world. When I was newly diagnosed and subsequently going through treatment, I needed actual human contact from those I love. All physical human contact had to come from my partner who I live with – that’s an enormous strain on a loved one, incidentally, who’s also isolating with me.
#LockdownOne – although it’s all one big old #Lockdown to me – largely passed me by. My lumpectomy (cancerous breast lump removal) was delayed for a few months because of COVID-19. The reason for the delay wasn’t just the risk of infection, it was also the lack of available ventilators. Having any kind of general anaesthetic is risky for me and as the operation’s duration would be 90 minutes, a ventilator and a bed in ICU would need to be on stand-by. I’ll never forget the call to inform me that my operation had been cancelled. I was desperate; I ended up having a bizarre argument about, god forbid if it ever came to it, I’d rather die of COVID-19 than of cancer, because COVID-19 might be the quicker option (I was fuelled by the fear of watching my mum slowly die of secondary breast cancer over 30 years ago) (sorry if some readers are offended by this part, it’s not my intention to cause distress or to belittle dying of COVID-19 – it’s devastating families – I’m attempting to convey the kind of impossible choice that I was faced with). The Breast Cancer Team insisted that I had options with my type of cancer and a small delay would be ok; they went onto warn that, if I caught COVID-19, I would probably die. I tried in vain to persuade them to operate without a ventilator on standby. I was told that this was out of the question because it wouldn’t be justifiable if I died during a routine operation. I was sent some tamoxifen via a volunteer and I had lots of phone contact with Breast Cancer services in the intervening months who provided emotional support via virtual means or telephone.
About a week after my conversation about my operation and the ventilator, the media started reporting that DNR (Do Not Resuscitate) orders had been placed on certain sections of UK community and that ventilators wouldn’t be given to those who it was felt, wouldn’t benefit from one or be certain to recover from COVID-19.
During those intervening months whilst I was waiting for surgery and treatment, I was suffering from extreme fatigue, migraines, chronic joint pain, and concentration loss. As the tamoxifen fought the cancer, my body basically shut down. I could literally feel my bones grinding together as the medication attacked the cancer cells. The pain took my breath away. I went on extended sick leave for the first time in my long career – after all, how could I lead an organisation through a pandemic when I couldn’t even follow a plot on EastEnders? I retreated into the garden to sunbathe, looking like a beached whale, stuffing my face full of crisps. I wasn’t worried about weight-gain as I knew that I’d lose it all post-surgery. I chose not to think about past times – memorable nights, and holidays, and stuff. It broke my heart to think about them. I often couldn’t listen to my favourite albums, especially ones that my friends had made; it was easier to block out my memories and pretend that I didn’t have this life before.
I quickly realised that there was no organised plan for disabled people who were supported at home with personal assistance. For the first couple of months, I sourced my own PPE at extortionate prices from the internet to keep me, my partner, my PA’s, and any agency staff safe until my local DPO (Disabled People’s Organisation) thankfully intervened and organised regular PPE drops from the local authority. I took all sorts of extreme measures to safeguard my home again infection. This included replacing one care agency who complained because I wanted their staff to wear masks in my home. Rather patronisingly, it was implied in an email that I should be saving the mask supply for those who really needed them, and that the agency had 28 years of expertise in public health, whereas I didn’t, so they knew better than me. My simple response was no mask equals no future contract. The implication that I was single-handedly depleting mask supplies incensed me. A few weeks after that email, the government guidance on mask-wearing changed in that it was deemed essential in reducing the spread of infection.
There was no guidance on how disabled people were meant to interact with PA’s, except for the fact that we should limit the number of PA’s coming in and out of the flat and the number of interactions with them, which doesn’t make one bit of sense when you’re supported to live independently and need to have physical contact.
My partner and I adopted a routine of showering, washing our clothes and disinfecting everything that we’d taken to the hospital with us; he’d adopt the same routine when using public transport to go to work in safer periods, avoiding me for at least an hour after work. I was delighted when I got a face shield from the local authority because people would see me coming and cross the street in fear!
And then the slow, creeping feeling that my life was of less value to others started to take me over. I actually felt guilty about the great life that I’d built; a caring partner, a rented flat located in central London, a busy career, a busy social life. For the first time I felt society’s perception come crashing down on me – after all, don’t disabled people just stay at home, being cared for, going out in groups with other disabled people anyway? NO, WE DON’T JUST STAY AT HOME OR GO OUT IN ORGANISED GROUPS.
My fears were confirmed when the Coronavirus Act effectively wiped out the Social Care and Mental Health Acts; the part which struck me was that the local authority could come and take over my care package. With a care package controlled externally, then the powers that be may decide to place me in residential care instead of living independently at home.
After my surgery (incidentally, I didn’t need a ventilator and I returned home after just one night in hospital) and a short spell of radiotherapy, I started to regain some strength, but I still felt pretty rough. My Linked In timeline was heart-breaking; many colleagues in the live events industry with whom I built trusted relationships with, were being made redundant ‘en masse’, and I felt powerless. I used the small amount of energy that I had to sign petitions, to donate to save venues, and to share social media campaigns. In previous times I’d be at the heart of any campaigning, being really active, using my opinionated voice to its best advantage, and if I’m honest, feeling a little bit pleased with myself that the music industry was interviewing me as it’s “disability diverse” voice. Instead, I was in isolation. Silenced.
My disconnection to the outside world has grown since March. I saw a few family and friends when it was safe to do so in the garden or in the local park. Yet days before meetup’s, the anxiety would build and, bizarrely, guilt, as if by meeting people, I was laying myself open to risk. Yet I needed all my family and friends to celebrate in person with me. I craved hosting a big ‘end of treatment’ party. I wanted to go out, I wanted to return to my life, I needed everything to go back to the way it was because it was hampering my recovery.
Don’t get me wrong, my family and friends were absolutely brilliant, and I felt totally loved and supported – they called me, we had zoom parties, we all kept in contact on social media. I kept myself occupied by posting amusing stuff and photos on social media to counteract all the negative news that was circulating. But after treatment had ended, I began to feel paranoid that all I was still talking about was cancer, because I had nothing else going on in my life.
I withdrew for a couple of months in the Autumn. I became overwhelmed with fear of the cancer returning before my annual ‘all-clear’ or convinced that my immune system was so weakened that I’d immediately catch COVID-19 and die if I stepped outside, and all that effort that had gone into surviving cancer would be wasted. I’ve only had one takeaway; abandoning it halfway through as the fear of catching COVID from an unknown source took over me. I dreamt about catching COVID and then being shouted at by those around me who said it was my fault. I worked out that it was the government guidance that was fuelling this paranoia. It’s because the guidance for extremely clinical vulnerable people is just that, and it says that we don’t have to follow it if we don’t want to – “it’s just advice.” I think that’s manipulative because it plays on the fact that if you don’t follow the advice and you get sick, then that’s down to your poor decision-making.
I started to dream about the friends that I hadn’t seen, about festivals, about gigs. I was so desperate that I ordered a couple of sequined capes off the internet – because clearly that’s ideal clothing for #Lockdown! One afternoon I lined up all my metallic nail polishes to remind me of my 24-hour Party People. I made an abstract painting out of metallic nail polish and eyeshadow, and pillar box red lipstick so that my make-up wasn’t going to waste in the drawer.
I’d never been scared to set foot outside the door, but here I was, terrified. Yet every other day I get ‘cabin fever’ and I’d have to escape into the fresh air; I felt like I needed to breathe. I whiz round the local area in my wheelchair, passing all the joggers that go round and round the park. But it’s harder to socialise outside in the winter months and I’ve had to limit my meetup’s in the park because I got really sick from getting too cold. It’s makes staying home even more daunting.
Since March I’ve embarked upon a series of “projects” to keep me busy and take my mind off cancer and COVID; making stuff – DIY (I painted all the radiators different colours), recipes and art. I started writing and gardening again. I invested in lots of books and vinyl.
During #LockdownTwo, it became like “Lord of the Flies.” There were calls from some sections of the public, fuelled by MP’s and certain sections of the media, that the “vulnerable should just stay home to protect themselves, so the rest of society could get on with life.” Calls such as these are growing, not diminishing during #LockdownThree. Originally, I was going to publish this piece during Disability History Month (18th November – 18th December 2020) but I think RIGHT NOW is the time to publish. Should all that I’ve strived for, be taken away from me in a heartbeat? I AM THE PUBLIC! If we’re going to protect the NHS and society at large from being overwhelmed by this pandemic, then we all be on #Lockdown. I’m also reminded of a past incident when I was caring for my Nan who had dementia. One day, on refusing to eat her dinner, she declared loudly, “well if it’s so good, you b****y eat it then!” I say to all those people telling me and other clinically vulnerable people that we should stay in #Lockdown – “if it’s so b****y good, you do it then!”
In the days before my birthday, I’m holding out for a vaccine. My lung specialist advised me that I should have it as soon as possible; she meant the end of December / early January. She wrote to my GP, who then rang apologetically to say that they wouldn’t be getting their first batch until the 4th January 2021, and I’d be in the second cohort. This meant that they hadn’t got a vaccination date yet. They assured me that they hadn’t forgotten me. I’ve heard the phrase “don’t worry, we haven’t forgotten you” a lot over the past eight months.
I’m desperate to have ‘the jab.’ I believe it’s the only way out when I see others around me calling for life to return to normal for those who aren’t ‘vulnerable.’ It appears to me that this is the only way in which I can protect myself and those closest to me.
Soon I need to return to my former life, to have physical human contact without screens or phones, to jump around at live gigs, to be packing my bags for a festival weekend, or I fear, I’ll just disappear into a murky hole in the ground.
Alt text: The image is a photo of me from Latitude Festival in Suffolk, UK. It’s night time and I’m sitting in my wheelchair on the viewing platform. I’m wearing a black puffer jacket, a white jumper, a pink scarf with blue metallic thread and a pink and yellow-green woolly hat which covers my ears and has two pink woollen braided tassles hanging down either side of my ears. I’m also wearing narrow purple glasses, wearing black leather gloves & a small white and red cross-body bag. My face depicts that I’m screaming and my arms are in the air. It could be taken that I’m enjoying the gig but in the context of the blog, the face could depict how fed up I am of staying in.