I was invited by Breast Cancer Now to take over their Instagram Stories for #BreastCancerAwarenessMonth2022
Alt Text:A screen shot of an Instagram page. A white lady with long brown/blond hair, wearing round pink/brown glasses, a black top, large silver hoop earrings and a silver chain, leans against pink wallpaper with skulls & butterflies on it. She is smiling. The main text in black on a white background says – ‘Breast Cancer Now, 55m, Welcome to Suzanne Bull’s Instagram Takeover.’
During the summer, I was contacted by Breast Cancer Now to takeover their Instagram account & describe what it’s like to be diagnosed with breast cancer when you’re already disabled. There’s a link to it here but you can also find it on @BreastCancerNow Instagram account.
Originally my IG Stories Takeover was supposed to come out in the summer. However, I was struggling with my pain levels due to my 6-monthly Zometa infusion & trying to save my energy for returning to festivals. I had also underestimated how long it would take me to think of what I wanted to present, how to present it, & then to storyboard & script it. Not only did I want to make it authentic to my lived experience, but I also wanted to make it accessible. I found out that Instagram Stories isn’t a completely inclusive format but I’m hoping in the future that I can work out a way putting my story into a post with all the alt text provided in the photos. The video clips are captioned, & where I could, I self-described on film (I should say, in truth, when I remembered as my brain fog is terrible at the moment). I want to say thanks to my colleagues in the Comms team at Attitude is Everything who gave me lots of guidance on how to make the film clips accessible, & also Breast Cancer Now who uploaded all the captions, film & pictures for me.
As time went on & my piece still wasn’t finished, I suggested to Breast Cancer Now that my IG Story Takeover could go out during October, which is #BreastCancerAwarenessMonth – they agreed. It went out on 11th October.
I could have done a “live” blog where people send their questions in & I answer them, but I really wasn’t confident about doing a live Q & A. I was scared of getting a question that I couldn’t answer! I also wanted to control the dialogue & the way in which my story was told because I had never seen a story from a disabled person with a breast cancer diagnosis. It’s so important that disabled people tell their own stories because we’re still so misrepresented in society.
Over the course of a couple of months, I planned, scripted & filmed the story. Yes, I do discuss challenging times, especially during the early months when I was diagnosed & then I had my operation cancelled because of COVID-19 spreading across the UK. I also describe many complex decisions, like having a lumpectomy instead of a mastectomy, & how I accessed radiotherapy as a wheelchair user – subjects all previously covered in my blog. But additionally, I didn’t want to make it seem like every moment was really horrible. I had some fun times, such reinventing myself as an artist & taking part in Grayson’s Art Club (all thanks to Maggie’s West London’s Expressive Art Group) & joining The Invisible Café’s Writing for Wellbeing sessions.
I wanted to demonstrate that I was active & enjoying my life, so there are pieces about yoga & swimming. But at the same time, I wanted to make the point that it’s not easy exercising as a wheelchair user, & I’d got support to plan out an exercise routine. The final take happens at Elton John’s gig at British Summer Time at Hyde Park, London.
I had a lot of fun making the IG Stories Takeover. Now I reflect on it, it was another way of helping me process what I’d been through.
I learnt new skills. Through the planning, I began to shape how I present myself & my story. There are many breast cancer stories out there, but I want to tell a breast cancer story from a diverse perspective, because I only know one other person with my disability & who lives with a breast cancer diagnosis (she’s been utterly brilliant throughout my ordeal). I learnt how to make IG Stories as accessible as possible, & it’s given me ideas about how to use other digital platforms that allow a greater level of accessibility.
I got some great feedback on my own social media – one of my twitter followers said that she was glad that a large charitable organisation had backed me because it was important for marginalised people who have breast cancer to be given a voice. That made me quite emotional. Breast Cancer Now also said that they’d had a lot of positive feedback because of the different perspective, but they also got a personal message from one of my oldest friends who said that my mum would be so proud of me. That made me cry. In many ways. I’m telling her story as well as my own, because she never got the chance to.
I want to finish by saying a MASSIVE THANK YOU to everyone who commented & who sent messages of encouragement & love to me & to Breast Cancer Now, to my newly-found Twitter #CancerBuddies, to my friends & my boyfriend Stephane who gave their permission to be part of the story & to my PA’s who supported me at the filming locations.
And I think Breast Cancer Now are wonderful. Their social media team encouraged & guided me but never pressurised me with deadlines or anything like that. They took accessibility on board, & they were so enthusiastic. But most importantly, they let me tell my story in the way that I wanted to. I can’t thank them enough.
It’s deeply unfashionable for a post-punker to be writing about the Queen. But I’m not in fashion.
Alt text:A black woollen winter coat is laid out on a spotted duvet cover. Pinned on one lapel is a round badge with a painting of a woman on it. Pinned on the other lapel is a medal with ribbon & a cross.
During our #WritingForWellbeing sessions, hosted by The Invisible Café, we’ve been encouraged to share our memories of the Queen & the Royal Family. Here are some of my recollections.
I inherited a Coronation Souvenir Tin
Alt text:A black & white photo of an old tin. Printed on the top of the tin is a logo of a crown & the following words: “Coronation Souvenir. H.M. Queen Elizabeth II. June 1953.” On the side of the tin are a Royal Couple (Queen Elizabeth the second & her husband Prince Phillip). She is dressed in a ballgown, wearing a diamond tiara & necklace. He is dressed in Military uniform complete with medals & a bow tie.
Objects & Stories (a poem – a draft was originally written for one of the 64 Million Artists’ #TheWeeklyChallenge)
Holding the Coronation Souvenir Tin
Brings memories flooding back of the green school notebook with your recollection of the Queen’s Coronation
Your writing neat, confident, in blue fountain pen
You made me a dress from multi-coloured tissues for the Silver Jubilee Fancy Dress Parade
And when my wobbly tooth fell out
Together we rifled through the blades of grass on all fours
Now I’m talking to your photo as I watch Sunday’s Platinum Pageant on the telly
I’m alone but feeling that that you’re close by as you always are for these grand occasions
Dressed to the ‘nines.’
Waiting for the Funeral Cortege
Alt text:A white man & woman pose for a selfie at the corner of a road. The woman has long curly hair & she is wearing round glasses & a black woollen coat. On one of the lapels is a round badge & on the other, a medal. The strap of her bag is showing. The man is wearing a flat cap, a leather jacket & a t-shirt from which his glasses hang. Behind them is a London Street with large, four-storey terraced houses & flats, railings, traffic lights, bollards & many parked cars.
On the day of the Queen’s Funeral, I felt it would be too upsetting to watch it on tv (I’ve never been good with death. The first funeral that I ever attended was my mum’s). Instead, Stephane (my boyfriend) & I went to the neighbourhood that I used to live in 20 years ago, Earl’s Court. We knew that the Cortege would pass along the A4 on its final journey to Windsor, so we took position at the corner of Earl’s Court Road and Cromwell Road just before 10am.
I hear the questioning voices all around me; “Why would you do that for someone you’ve never met? For someone who you don’t know. For someone who’s rich beyond most people’s means & who doesn’t give a s**t about you?”
Here’s why:
The Queen & I
I thought the Queen was a nice lady. When I think of the Queen, I think of all the Jubilee parties & Royal Wedding parties that we had. When we got together with families, friends & our neighbours. Both sets of nans & grandads, my great-grandmothers, & my great aunts & uncles loved the Queen.
The Silver Jubilee was so exciting. At that time, I lived in a little cul-de-sac on an Essex estate & all the neighbours came together to organise a street party. I remember my dad & my neighbour Uncle Dave fixing Perspex sheets to wooden stakes with an industrial sized stapler. They wanted to protect the large tent they’d made “in case of inclement weather.” The other things I remember were the fancy dress parade & the infamous dress & hat that my mum spent weeks making, hand sewing all these multi-coloured tissues onto fabric, & then losing my tooth which we couldn’t find in the grass (but the Tooth Fairy still came).
I went to the ‘Longest Street Party in the World’ on Oxford Street for Charles & Di’s Wedding. That was great. Dad came with me. We met the cast of ‘Rentaghost’ who were really, really weird & very, very happy. Dad & I still laugh about it now because even as a small kid, it was obvious to me why! He said my little bemused face was a picture.
The sadness around the Queen dying was hard for me to process because many of my family members are no longer with me. They were so much fun. Any excuse for a party. I love partying. I get it from them.
I met the Queen nine years ago. She gave me my MBE at Buckingham Palace (for ‘Services to Music, Arts and Disabled People’). I was worried because I couldn’t stand so she could reach me to pin on the medal. The guard said not to worry as she would come to me. And sure enough, she jumped off the podium & there she was, so close.
The Queen looked like my nan, Nancy Wallace, so much so that one time when my dad & step-mum watching the news, my brother Pieter pointed at the telly & exclaimed, “Look, it’s Nanny Nancy getting off a plane!” He was about 3 at the time. It’s one of my favourite stories about him.
The Queen had a cold which I caught because we shook hands. She asked me to explain how I helped disabled people, so I gave her my best ‘pitch.’ I wasn’t nervous; she made me feel calm & I felt that she was genuinely interested in me.
I did all the ceremonial stuff right; all the correct addresses when greeting her & leaving her, including wheeling myself backwards & bowing to her at the end (on the DVD which my dad insisted that we got, you can see my sister creasing with laughter because she thinks that I’m going to wheel into someone because I’m not looking where I’m going. Ye of little faith). I stopped talking as soon the Queen’s hand came out to shake mine (the protocol is that when she stretches out her hand, that’s the sign for you to move on).
There were about 100 to 150 people receiving Honours that day. The stage managing of the ceremony was amazing & everything was done in time to the music. One of my friends describes it as being bounced along as you collect your award & make your way to the back of the room. It’s exactly that.
At the end, the Queen walked back up the central aisle, then she stopped & turned towards Stephane & I. Looking at us, she bowed. And then she went on her way.
This year I returned to experiencing outdoor festivals (thank god!)
Alt text:A black & white ‘selfie’ of a lady with long hair, wearing a baseball cap backwards, a face mask & a spotty halter neck top on a viewing platform. Her eyes are wide. Behind her a crowd of people are watching a large stage bathed in lights & smoke.
The photograph shows me on the viewing platform (area for disabled people & their families, etc, to watch shows in comfort & safety, if they choose) in one of the tents at All Points East Festival. ‘Squarepusher’ is playing. I look as if I’ve been partying hard but in reality, I’m stone cold sober. I’m just deliriously happy to be at ‘dance day’ of All Points East. ‘Squarepusher’ was awesome & played the best set of the day.
This summer I returned to outdoor festivals. To gently ease myself in, I chose festivals that were either a short drive or train ride away. I also opted not to do any overnight stays. I chose BST’s (British Summer Time) Elton John in Hyde Park, Ealing Blues Festival, Primadonna, All Points East & Notting Hill Carnival.
I also packed plenty of PPE – gloves, masks, alcohol wipes & hand sanitiser. I drank plenty of water & cranberry juice (such a nice cranberry juice drink at All Points East!) I wore Factor 30 or Factor 50 suncream, but in general, I stayed out of the sun. I wore my baseball cap. It was an exceptionally hot festival season & my lungs don’t cope well when the temperature goes over 30 degrees centigrade.
In general, I’m terrible at pacing myself, but I had to this time around due to my Zometa infusion (to protect my bones) as well as my monthly Zoladex injection being due in July. The combination of these treatments always wipes me out for two weeks plus.
Elton John, BST, Hyde Park
Alt text:a coloured ‘selfie’ of a white woman with long blonde / brown straightened hair, wearing pink / brown rimmed round glasses, a back hoodie, a gold & black necklace, another thin gold chain & a black halter neck top with white dots on it. She is on a viewing platform at an outdoor festival. She is smiling. Behind her is a large outdoor stage, crash barriers & a few fans gathered at the front of the stage. It’s a cloudy day.
The photograph shows me on the viewing platform at the main stage in Hyde Park. It’s shortly after I arrived so that’s why I’m smiling so much. Behind me the main stage is being prepped for the opening act of the afternoon.
But despite this meticulous planning, on the night before the Elton John gig, I had a huge panic attack. It was all over COVID. I was suddenly filled with self-doubt – should I be even going to a huge, crowded festival site, how would I be able to keep myself clean, what if I can’t cope? My boyfriend very calmly reassured me & said that if I felt anxious, we could come home immediately. However, he also said that I’d be disappointed if I didn’t at least try. And he was absolutely right.
Just like I love gigs, I love festivals too. Going to festivals is normally what I do for the majority of the summer & now I had the opportunity to return after my period of enforced isolation. So, I cried a bit more to get the fear out of my system & then went to bed early so I could rest up before ‘The Big Return.’
I’m so lucky to have a boyfriend who totally ‘gets me’ & understands the situation that I’m in. He’s been gently reassuring & encouraging me to return to the things that I love doing because he knows how miserable I’d be without them.
As soon as I entered the festival site & I wheeled onto the large viewing platform (the main stage one at Hyde Park is one of the biggest in the UK; there is a fantastic view of the stage & across the site), I felt ok. All my worries disappeared & to be honest, it felt like I’d never been away from a festival site.
The BST is a huge site, so I just stayed on the main stage viewing platform for the majority of day. Usually I’d be frantically wheeling up & down the festival site, tent-hopping to see my favourite artists but just driving to & from the festival (having said this, Hyde Park is only about twenty minutes’ drive from my flat), as well as entering & leaving the site was enough for me on that particular day. The viewing platform also has a bank of clean, flushing accessible toilets which I need to be near to these days, LOL!
Whilst enjoying the music, I was able to catch up with a few colleagues in the events sector that I’d missed, which was lovely. In the guest area, I got talking with another customer who’d also been treated for cancer over the pandemic. We bonded over how scared we were about returning to festivals & festivals portaloos in particular, but ultimately, we agreed that we needed to restart our lives once again. I know this conversation will become one of the most important ones that I’ll ever have with a random stranger.
I’d never seen Elton John before. What a mega star! He played effortlessly & I loved his gentle interaction with the audience. He was completely different to what I imagined him to be. He was humble, appreciative & came across very genuine. Much like when I saw Barry Manilow play in Hyde Park for the BBC’s Proms in the Park, I was amazed at the musicianship.
Not only was Elton John great, but he put on some really talented artists that he’d chosen especially for his show. I love that he’s so supportive of new music.
After the Elton John day, I had a couple of weeks off to receive intense treatment, returning to festival going towards the end of July.
Ealing Blues Festival, Walpole Park, West London
Alt text:A coloured ‘selfie’ of a white woman with freckles & long blond / brown curly hair, wearing sunglasses on her head, a silver chain, a long silver necklace with large links & a pink top. She is smiling. Behind her are trees, a dusty parkland & blurred images of other people.
The photograph shows me onsite at Ealing Blues Festival, looking really relaxed on a lovely Sunday afternoon.
One local festival that I rarely miss is Ealing Blues Festival & I often go to the Jazz Festival too. They often coincide with my boyfriend’s birthday celebrations. In fact, we had a glorious party over the Blues Festival four years ago for his 60th. It’s also the first time that I’d attended a festival with my dad!
For a number of years, Ealing Council has supported a series of festivals based in Walpole Park, most of which are subsidised for the local community. Alongside the Blues & Jazz Festivals, there’s also a Comedy Festival.
Ealing Festival also has its roots in the Ealing Blues Club, its most famed artists being the Rolling Stones, & it’s been awarded a ‘Blue Plaque’ to commemorate the beginning of British Rhythm & Blues.
I’m intending on taking the bus to the festival & back in future years as an attempt to live my life more sustainably, but Walpole Park is just a twenty-minute drive from my home & I can park on the street right outside the park’s entrance. You can also take your own food, drink, picnic blankets & chairs which is so handy if you’re ‘festival-ing’ on a budget. It’s so easy to load up the car & head off.
I had another important reason to go to Ealing Blues Festival this year – Canvey Island’s own Wilco Johnson was playing & I’ve never seen him before. I think Wilco is amazing! A few years ago, he was told that he had incurable cancer, so he went on a final farewell tour for his fans. He had his treatment & it was so successful that he became NED (No Evidence of Disease). So now he’s back out on continuous tour & making the best of his life. When I was onsite, I made him a little film to say that I’d come to support him, then I tweeted him & he clicked the ‘like’ button. I was so chuffed!
In reality, Ealing Blues Festival was quite tough going for me. I was still in pain after the infusion & then I got an infection. It was ridiculously hot too which made the site extremely dusty & this just added to my nausea & general discomfort. Luckily the site has plenty of trees where you can shelter from the sun & I was drinking plenty of water. St John’s ambulance also assisted me that day because I’d forgotten my paracetamol & they provided me with some. Such lovely people!
I had tickets for both days of the festival. To manage my energy, I left at 5pm on the first day. I wanted to save the rest to see Wilco who was headlining on the second day. The only time that I’d previously left a festival early was my last camping festival about 20 years ago. It was freezing in my tent & my bones couldn’t take it anymore. I packed up my stuff & found a taxi that would take me the hour & a half drive back to my London flat. It wasn’t that expensive either!
Anyway, back to Ealing Blues Festival. We were joined by more of our lovely friends the next day to see Wilco Johnson. A couple of my friends had experienced their own serious health challenges during the pandemic, so we were really glad to be with each other again.
And Wilco Johnson was fabulous, strutting back & forth & up & down the stage in his trademark way. He seemed genuinely chuffed that many people had come to watch him.
Primadonna, The Food Museum, Stowmarket, Suffolk
Alt text:A photo of a white woman with long blond/brown hair in a wheelchair sitting with her arms outstretched to the side. She is sitting in a tree-lined festival field in front of huge, multi-coloured letters that spell out ‘Primadonna.’ She is wearing a blue denim jacket, a white top, blue trousers, black trainers & pink/brown rimmed glasses. She is smiling.
This photograph was taken shortly after I arrived at the Primadonna Festival site. My smile reveals how happy I was to finally get there. I love the huge multi-coloured letters & the festival’s branding in general. It’s so jolly!
The following weekend I did my only ‘out of town’ festival for the season – Primadonna Festival. (I’d also researched getting to Nozstock & 2000 Trees Festivals by rail & taxi/accessible bus & staying in accessible accommodation nearby, but it was impossible to do).
Primadonna is a boutique festival that I’d been wanting to try out for a couple of years. It’s a literature & music festival, based at The Food Museum in Stowmarket, Suffolk. The audience-base is predominately women. The Founders of the festival, ‘The Primadonnas’ include Sandy Toksvig, Catherine Mayer & Kit De Waal.
I wasn’t able to book any wheelchair accessible accommodation in the local area, so I bought a day ticket for the Saturday, leaving early from Liverpool Street Station to reach Stowmarket at lunchtime. And then a rail strike was announced! I’m not complaining because I support the unions & workers’ rights, but it did mean re-organising my passenger assist & return train tickets for the Friday instead. I was only able to experience the festival for four hours because it started part way through the afternoon, but that was my choice because I could have attended on Sunday instead. I didn’t because I thought travelling by train would still be complicated after the strike.
Primadonna Festival site is set in beautiful countryside just a 10-minute push from Stowmarket train station, through the town centre, to the Food Museum. Despite being there for just the afternoon, the experience was transformative. As soon as I entered the site, I experienced something that I’ve never had on a festival site before – peace. The museum grounds are gorgeous & we were totally spoilt by the sunny weather.
I worked out why I was at ease onsite – there were no surly men, barking their orders, radios blaring, swaggering about, tripping over the huge egos of one another – I could go on, but you get my drift! It was so refreshing.
The atmosphere onsite was calm, positive & supportive. It seemed that people cared about your wellbeing & went out of their way to ensure that you had everything you needed to just ‘be’ at Primadonna.
I met up with some old friends as well as meeting new people; including interesting people who made podcasts, who wrote, made new outfits from recycled clothes & wood sculptors. I listened to a talk about the Witchfinder General & that terrifying era for those who were accused of being witches, but who were entirely innocent (Manningtree, the home of the Witchfinder, is located just across the Suffolk border, in Essex). I listened to a debate between two established writers about their writing processes & their early careers. I did a lot of shopping, including a necklace shaped into the word ‘Difficult’ from Perspex (according to the makers, ‘Wear & Resist’, that was the most-bought necklace by festivalgoers that weekend & if that doesn’t say that we live in a misogynistic world then I don’t know what does!) I watched a female musician play an acoustic set whilst her little daughter danced enthusiastically at the front of the stage with her young friends.
The slogan of Primadonna Festival is that you’re there to experience ‘the world as it should be.’ Festivals don’t have to be banging music, frenetic rushing from stage to stage, large crowds to negotiate; they can be gentle places, relaxed approaches, spaces to breathe in & at which you can take stock.
I’ll definitely be returning to Primadonna next year. I’ve worked out that I can stay in accessible accommodation in Ipswich & then travel between there & Stowmarket every day. It’s a really cheap journey. I’m just waiting for ‘The Primadonnas’ to release the tickets…
All Points East, Victoria Park, East London
Alt text:A ‘selfie’ of a white woman with blond/brown hair on a festival site. She is wearing a black baseball cap with a pair of sunglasses perched on top of it. She is wearing pink/brown rimmed glasses, a black V-neck top with silver threads running through it, a leopard-skin print bracelet with fake stones & a Perspex necklace that spells out the word ‘Difficult.’ Behind her stand a few people, waiting for the DJ to come onstage, the stage itself & large banks of speakers, including one which forms an arch above her.
This photograph was taken at one of the All Points East days. I’m at the 6 Music stage, waiting for Afrodeutsche to come on – she didn’t disappoint!
I went to two days of All Points East, but they weren’t consecutive days which made it much easier to manage my energy levels. I drove to the festival & back, the journey is about an hour & a half each way from my flat. It didn’t seem to make much difference that one day when there was a rail strike.
The days that I attended were two very different days – one dance (the headliners were The Chemical Brothers) & the other a calmer day (the headliners were The National). Both days were equally enjoyable. On the first day, I had enough energy to explore all of the festival site & I went to watch artists at a few of the other stages. I’m really glad that I experienced all of Squarepusher’s set; he was awesome. I got a bit frustrated with myself as I had to keep resting between my bursts of frenzied dancing! I have to practice dancing for longer periods. I don’t want the pain from the cancer treatment to take away that joy as well. I can’t let it suck up all the joys of life!
All Points East is one of the festivals that programme a lot more female, non-binary and trans artists (which frankly is how it should be) & I was really pleased to be able to experience Mary-Anne Hobb’s All Queens line-up at the 6 Music stage. One of the areas where female artists are under-represented in a major way, is electronic music. I listen to her 6 Music show pretty much every weekday, so it was great to see the artists that she champions, in the flesh.
The Chemical Brothers’ Day was on a Saturday, so everyone was up for a party which was really good to be part of. But by the end of the afternoon, I had to retire to the main stage Viewing Platform for a rest & to get some shade under the trees. It meant that I missed Kraftwerk on the other stage, but I honestly didn’t have the willpower to push my way back through the crowds from one viewing platform to the other. I wasn’t too upset, I’ve seen Kraftwerk before. Having said that, I’ve lost count of the number of times that I’ve seen The Chemical Brothers. I always go & see them play at festivals & when they’re touring. They’re one of my all-time top electronic acts & I love how their visuals have developed over the years. I was with my good friend Mandi who is an awesome VJ -artist (playing under the name of ‘Mouse on the Telly’) & she goes to watch them for the same reason. During the set, she was explaining to me how some of the effects were created, which I found fascinating.
The National’s Day was altogether a more relaxed affair. Most of the artists that I wanted to see were on the main stage, so I settled myself in for a gentle day on the viewing platform. Again, I could have crossed the site to experience Public Service Broadcasting & Fleet Foxes, but I wasn’t feeling too great that day, so I decided to take it easy on myself.
I loved Mogwai’s set. What a great band they are. I love the way that band member Stuart says “thank you” or “thank you so much” after every song, as if he’s surprised that people turned up to watch them. Mogwai played instead of Low & I want to take time to wish Low’s Mimi well as she is undergoing cancer treatment & was too ill to play. Damn bloody cancer.
The National were epic but what made it really special was an Autistic girl sitting on the platform with me. She absolutely adored The National & sang her heart out to every song & she was just so excited to see them. That honestly made my festival day & everyone on the platform fell in love with her.
And then when we left the site, many people in the crowd were singing. It was so nice to experience that. The perfect end.
Notting Hill Carnival, Ladbroke Grove, West London
Alt text:A ‘selfie’ of a white man & woman in the middle of a crowd. The man is wearing a pink paisley trilby hat, a blue flowered shirt & rectangular glasses. The woman is sitting in an electric wheelchair. She has brown hair, which is tied back, but some strands cover her face because it is windy. She wears pink/brown rimmed glasses, a turquoise halter-neck top, a gold chain & small silver hoop earrings. She is cheering. Behind them, a diversity of people in ethnicity & age gathers.
This photograph was taken at Notting Hill Carnival, at the top of Barlby Road where my boyfriend & I stand most years to watch our local carnival, which happens to be the biggest one in Europe. Although you can’t tell from the photo, we’re right at the front & we’re squashed in by people either side of us.
My festival-going usually ends with a day at Notting Hill Carnival, but I was lucky enough to go to two consecutive days this year (I hadn’t been to Kids’ Day for years). I’m going to attempt to explain Carnival, but in reality, I can’t because you need to experience it for yourself, even if that’s just once.
I’ve lived in the Ladbroke Grove area for 20 years now. I’m just a few streets away from the main procession. The performers & the lorries tend to get ready in the next street, so the sound of Carnival usually begins at 6am on each day & the police helicopter can be overhead until the early hours of the morning. My road is usually the car park! With Carnival dominating the area, you can either go away on holiday for a few days or join in the fun. Just staying around for the festival, but not joining in, isn’t really an option because it’s all-consuming. I feel bad if I don’t go to Carnival because the performers make so much effort with their amazing costumes & dance routines.
In years gone past, I’ve roamed around Carnival as best I could, but it’s became more difficult as I’ve got weaker. Towards mid-afternoon, the crowds are huge & jammed packed into the roads & I can no longer cope with this. For the past 15 or so years, I’ve taken my place at the top of Barlby Road where it meets Ladbroke Grove. It’s where the lorries sometimes turn in & there is always a large police presence, so I feel safe there. I’m by no means the only disabled person at Carnival – we’re part of the crowd & part of the performance as well. Everyone goes – elderly people, kids, babies, young people, old ravers like me & my boyfriend, lol. My boyfriend isn’t a great lover of crowds, so we agree to stay in this spot until 5pm when the crowd tends to start surging in different directions. Barlby Road is just a couple of streets from my flat, so it’s easy to get to & from it by walking / wheeling.
Carnival is loud, loud, loud & has a huge party vibe. I absolutely love the Carnival tunes. Of course, this is very physical experience for me, but the music tends to spur me on to keep dancing.
2022’s Carnival was mega-busy; hardly surprising because it wasn’t permitted to take place for the past two years due to the pandemic. As my boyfriend & I arrived at our usual spot in Barlby Road, we were struck by how big the crowd already was. Unfortunately, we got caught up in a crowd surge about 3.30/4pm but I managed to force my way out of it. I never use my manual wheelchair at the event, I always take my electric chair which is very strong & big, & it creates a presence in the crowd. I told my boyfriend to hold on tightly to the back of my chair & I powered through the people, quickly. I tend to get a mixed reaction when I push through the crowd; obviously it’s unfortunate if anyone’s toes get run over (I never do this to kids or elderly people) & some people insist that I can’t get through. Every year there’s one person who says, “you shouldn’t be here!” I don’t bother with ignorance as base as that. A quick giving of ‘the bird’ usually suffices, although I don’t always do that because situations can be tense. Other people actively move or get others to move, warning others that there are wheelchair users, kids or elderly people around them.
So, due to the crowd surge we lost our front row view, but a good friend of ours turned up to say hello, so we had a really nice time hanging out with her.
I didn’t feel in particular danger whilst the surge was taking place, but I could see that my boyfriend was scared. One of the young stewards fell at my feet & I hauled her up, sharing a joke that it was her that was meant to be protecting me, but she wasn’t harmed, just a bit shaken. I didn’t want anyone to fall on me though, especially where I’d had surgery, so I took the wise decision to step back from the front.
I also want to say that crowd surges happen anywhere & everywhere, & a crowd surge at Carnival is the same as ones that you could get at any large festival. I got caught up in one when I left Hyde Park after the Elton John gig & we had to shout out to other members of the crowd to form a protective ring around me until another side entrance was quickly opened.
And finally
I’ve concluded that as long as I pace myself carefully & that I’ve meticulously planned ahead for each outdoor event, I can return to enjoying festivals. I discovered that I prefer smaller festivals now because I can relax more & it’s easier to take time out if I need to. Travelling by train & back to a festival is a really nice journey, especially if it’s with other festival goers.
In years to come, I hope to be able to drive long distances in comfort once again & be able to return to festivals that are more remote. But until then, these four festivals that I went to in 2022 will suffice for my festival experience.
I also want to thank my boyfriend Stephane for coming to the festivals with me because I couldn’t do it without him. And anyway, a festival ain’t a festival without him by my side.
#TriggerWarning: This blog contains details about medical procedures & emotions before, & after cancer scan results.
Alt Text: A pen & ink painting of shapes that resemble waves at sea. The waves are outlined in black & filled in pink. There are random spaces that have been left white to represent glimmers of hope.
In early July, I had my first proper scare. I found a new lump in my breast.
Actually, my partner found the lump because he helps me to check each month. I’ve lost all confidence in my ability to judge what’s different in my body after my Breast Cancer was picked up in a routine mammogram.
We both checked a few times over the course of two weeks. The lump stayed. It was definitely a lump. It was near to the operation site. I knew I had to act fast. No matter the fear (cancer is all about not wanting the test results but wanting the test results at the same time), I knew that I had to get the lump checked out ASAP.
Although my GP Practice is very supportive, I didn’t bother to go through them first. I was going to the hospital chemo unit for my bone infusion in mid-July. I decided that to save time, I’d pop along to the Breast Cancer Unit after I’d had my blood and COVID tests. At bloods, I happened to bump into my Breast Cancer nurse & I told her about the lump. She urged me to ring the nurses’ line so they could book me an appointment. And of course, as always, she reassured me, explaining that lumps can appear for all sorts of reasons. But she also stressed that I mustn’t delay in getting it checked.
Despite her advice to ring, I went around to the Breast Unit anyway & to be honest, I was in a bit of a blur. I thought that a nurse might be able to check it there & then & I’d have an answer. The receptionist was very kind but said no, I actually needed to be seen by a surgeon. Of course I did. I felt a bit silly thinking that a nurse could give me a diagnosis there & then & after a ‘feel.’ The receptionist took my number so that a nurse could call me back. I went round to the Maggie’s Centre for a cup of tea & a chat. One of the kind staff there said that I shouldn’t delay getting it checked & that I’d done the right thing to speak up.
Two days later, I had my bone infusion as planned. Later that day, one of the Breast Cancer nurses rang me & was again, very supportive & reassuring, but after listening to what I’d found, she said that I needed to see a surgeon. She said that my one had left, but I’d still be in good hands. Within two minutes of our phone call ending, I had an appointment for a week later. I was amazed at the speed in which I was to be seen. But I was very, very frightened.
Whilst waiting for the appointment, I saw my GP for my monthly Zoladex injection. He said I’d done exactly the right thing in ringing the Breast Cancer Services. He was also reassuring, saying that I’d had several tests over the past year & he felt confident that I’d be ok, but that I still needed to be checked (there’s a theme here).
And then the guilt came. It’s true that I’d had lot of tests & scans over the past year. All, thankfully, showed NED (No Evidence of Disease). Most of the side effects that I’m experiencing are due to my body getting used to the medication but confusingly, they also look like the signs of secondary (or metastatic) Breast Cancer. I still can’t tell the difference between what’s my ‘usual’ chronic pain from my existing impairment, or what are new symptoms. My GP has always erred on the side of caution; always agreeing to further scans & checks. This is because a small amount of cancer was found in one lymph node, plus I had waited an additional four months for my lumpectomy because of the pandemic. The original breast lump had shrunk whilst I was on tamoxifen, but another small one had grown by its side.
I felt guilty because I didn’t want to waste anyone’s time, or NHS resources. But then I realised that no one minds, they just want to help you & they aren’t judging you. And my GP also said that it was important for me to have clarity for my own mental health. I felt really ‘heard’ when he said that. He recognises that my mental health has taken a real knocking since diagnosis.
Many people who live with a cancer diagnosis speak of #Scanxiety – I’ve previously covered this in my blog. Yet I couldn’t let my mental health spiral again. I’d been happier in the last few months & feeling quite good about my life. So, I focused very hard on convincing myself of two things – that the lump would be absolutely nothing & that there was no point catastrophising until I knew exactly what it was. Impossible as it sounds, I did largely manage to push negative feelings away, but it took a huge amount of mental energy.
As I’ve written in previous blogs, the cancer treatment is having a drastic effect upon my mobility, & I couldn’t bear to think that I was going through so much treatment & then for it not to work. I was frightened about potentially having more powerful treatment & that chemo would most certainly drastically affect my long-term quality of life – I already have very poor circulation, I have osteoporosis, I’m at risk of blood clots & my lungs are restricted. I remember what my sister had said about chemo – that she wasn’t disabled at all until she had it, & if I could avoid it because there might be only a 6% difference to the predicted outcome, then I should. My sister now has COPD (Chronic Obstructive Pulmonary Disorder), has injections to ease the chronic pain in her bones & is currently receiving treatment for a blood clot.
The day of the appointment came & it was at a different hospital to the one that I usually attend for cancer check-ups with oncology. Apparently, a few services & departments had been moved around post-COVID in order for the Hospital Trust to cope with the demand of new cancer patients, alongside those needing treatment but caught up in the ‘backlog’ caused by COVID. My Trust now has a “Cancer First Stop” department – I guess it’s like a triage system. I was nervous. I find new medical teams very daunting.
To cut a very long story short, I’m absolutely ok.
First, I saw a new Breast surgeon & she gave me a thorough physical examination. She explained that I had a lot of scar tissue, & even though she couldn’t feel anything that alarmed her, she still needed to send me for further tests that day. She also marked up the area that she wanted the radiographer to check. That freaked me out a bit because it reminded me of my pre-surgery. Then she sent me off to the Breast Imaging Department but with lots of words of reassurance which I found comforting. I’d had mammograms in this department before, so that made me feel a little easier, but my heart was beating very fast & I was furiously blinking away tears.
When I got to the Imaging Department, a kind colleague of my NHS support person, Margaret, arrived to help, & we went into the ultrasound together. As I’d only had a mammogram in February & it was clear of disease then, the mammogram part could be skipped. The radiography team were really supportive. After two minutes in ultrasound, they had located the lump & they were able to tell me what was going on – they were able to clearly see the cause of the lump – a small amount of fluid. A completely normal occurrence two years post-surgery. It made total sense to me that fluid was still left. I had my breast drained twice after surgery (remember “Alien Boob!” LOL!)
Then the team checked my armpit as this was very sore, but again, thank God, everything was clear. I didn’t need a biopsy (& that meant no needle, hurrah!)
I must have said “thank you” a million times over – at least, that’s all my partner was able to hear me saying in the examination room. I think a lot of the relief came from the fact that it was actually “something” that we had both felt, & not like the other tests & scans where there wasn’t “anything” found. This might sound a bit strange, but it made me feel like I wasn’t wasting the NHS’ time.
Then I jumped into a taxi & went straight home. I cheered in the cab & the driver asked me if I was celebrating something. “Good news!” I replied without going into detail. For a few hours afterwards, I couldn’t get over the fact that it was going to be ok. I was astounded & very, very relieved.
I hadn’t told anyone except my sister & one other close friend what I was going through. Again, to manage my mental health, & remembering how hard it can be to manage other people’s emotions & reactions, I decided that it wasn’t worth worrying people. So, I did a few post-result texts to family & close friends, along the lines of, “well, I’ve had a bit of a scare, but I didn’t want to worry you unnecessarily, so I didn’t say anything, & that was right thing to do because I’m absolutely fine.” I think there was shock because my social media shows me doing stuff & getting on with life, but that’s exactly how I want it to be.
But the next few days I crashed. I don’t know what I was expecting, really. I thought I’d be deliriously happy without a care in the world. I thought I’d be organising a party. But I just felt really flat & empty. Like an anti-climax. I put it down to being mentally exhausted.
But ‘The Scare’ is over & it’s business as usual.
P.S. Remember, anything that doesn’t feel right, a lump or something else, & you feel uneasy, don’t let fear or inertia prevent you from getting checked out. Please, please, always go. Don’t dismiss your pain or malaise – or let anyone else dismiss it – including medical professionals. Be persistent. Get someone else to advocate for you if you need to.
My partner said several times over that he felt bad about finding the lump & potentially throwing my life into turmoil once again. I assured him that he’d done absolutely the right thing because he could have saved my life, or he could be giving me a better chance of longer survival through early detection.
With my lifestyle, you’d be forgiven for thinking the obvious from the blog title, but I’m referring to a wholly different type of acid & not a pleasurable experience!
Me photographed at 6 West, Charing Cross Hospital, London, 6th July 2022.
Alt Text:A white woman sits in a large red, faux-leather hospital chair. She has long brown/blond hair & she wears red/brown glasses, a white surgical mask & a black t-shirt that says ‘Rebellious Hope’ in gold capital letters across it. Her left hand & forearm rest on a white pillow. In the back of her left hand is a cannula which is connected to a plastic drip wire. On her right wrist is a white hospital tag.
Let me start by saying right here & now that I’ve been in & around the music industry for a long time, but I’ve never taken any illegal drugs. Having to take medication in pill form from such a young age means that psychologically, it’s genuinely inconceivable for me to believe that I could have a magical, transforming experience by popping a pill; whenever I take pills, it’s always because something really bad has happened to me.
It turns out that the regular medication that I take (Letrozole (orally) & Zoladex (monthly injection into my stomach) – both are used to treat certain types of breast cancer such as hormone-receptor-positive breast cancer) might be really good at preventing cancer recurrence, but they’re absolutely s**t for my existing impairment. Oh joy! I already have osteoporosis due to being disabled & being a wheelchair user for over 25 years (I think it’s 25 years, I forget because becoming a wheelchair user was a gradual, ethereal process over a couple of years & not one that I regret in the slightest). Now I’m on a treatment of an infusion of Alendronic Acid (a Bisphosphonate) to protect my bones from decaying as much as possible. I have this every six months & it takes 15 minutes to go in, including the saline wash afterwards, but the infusion creates two weeks of havoc afterwards & some of the side effects don’t disappear until it’s time for the next one. Even deeper joy!
At first, I took Alendronic Acid in tablet form. This involved timing the tablet carefully before food every week & then having to sit up straight for at least 30 minutes afterwards to let the medication ‘do its thing.’ Unfortunately, the tablet form wasn’t really strong enough to protect me, so about 18 months after my surgery (which took place in July 2020), I started on the infusions. At the moment, I’m currently booked for this treatment until November 2023, but cancer being the unpredictable beast that it is, who knows for sure!
Before having an infusion, I had to have a dental check up because this treatment can cause serious damage to jawbone & teeth; it’s called osteonecrosis of the jaw but thankfully this is a rare side effect. I passed my dental check-up but with a warning from my dentist to keep up the 6-monthly visits to her which I have done ever since.
I’ve had three infusions now. At the first one, one of the seniors, Paul, in the Chemo Unit told me about all the possible side effects. He also talked me through how he was going to deal with my needle phobia. I was banking on being able to put Emla (numbing cream) on the back of my hand, but Paul told me how the infusion had to be given through a little tube that would be inserted into my vein, & the numbing cream would restrict the opening of the vein. I felt sick because the worst part of my phobia is when I have to have needles inserted into the back of my hand. And my veins tend to be hard to find due to their deepness – I have Raynaud’s Syndrome.
He went off to prepare everything.
By the time he called me to come forward for my infusion, I was shaking. But two simple, but effective, ‘tricks’ changed the situation for me & made me feel less apprehensive. The first was that a lovely lady called Margaret (I think I’ve spoken about her before in my blog) was accompanying me. She’s a hospital staff member, responsible for making sure that patients with learning disabilities are safe & comfortable, but she was assigned to me because of my needle phobia. She’s absolutely fantastic because we have a good laugh & a catch up whenever we see each other, & this is a very good distraction technique from the procedures. She was the last person I spoke to in the Operating Theatre before I went under the GA (general anaesthetic) & it was extremely comforting. Everyone needs a ‘Margaret’ by their side in hospital.
The second trick was that Paul immersed my hand in warm water for about 10 – 15 minutes to open up my veins. Why had no one thought to do this before?!!! It was a game-changer for me. He was very gentle & I honestly wasn’t aware of when the cannula & its little tube went in. The Alendronic Acid doesn’t really feel of anything as it goes in. Perhaps for the first one I felt a bit of a sensation, but I’ve just had a third infusion & I didn’t feel anything except for a bit of discomfort in the back of my hand. The saline wash is a bit cold, but on the third time, I didn’t feel any coldness.
I was honestly expecting a lot of stinging & I remember asking Paul several times if the infusion would hurt. This fear is borne out of having many intravenous antibiotics due to feet infections & kidney problems. One horrendous time about 20 years ago when my veins weren’t taking a drip anymore, a nurse decided to inject me at speed into my forearm with antibiotics instead. It burnt inside my veins so much but my howling was met with “hurry on up back to London where you can be treated there!” (I had been taken as an emergency from a major music festival site in the south-west of England to a main regional hospital where I stayed for a week with no clothes or money, so the patients had a whip round to help me out!) Charming. I love a positive bedside manner!
My needle phobia started when I was a toddler. I remember being in hospital (Tadworth) when I was about three; I was sitting on a nurse’s lap & she was feeding me. Another nurse came along & she asked me to stick out my thumb, which I duly did, only for her to shove a huge needle into it. It really hurt & I bawled my eyes out because I was so shocked. And it bled as well, which was horrible as I was eating at the time. I really hope that no one does that to kids these days.
Anyhow, back to the here & now. After the first infusion I went home & became slowly sleepier over the course of the afternoon & evening. Paul had warned me to expect flu-like symptoms, but nothing prepared me for the searing pain in my bones, joints & muscles which woke me up the following morning. My teeth hurt (even my false one!), my jaw ached (I have existing a-typical facial pain), all the areas where I’d had surgery over the years & all the sites where I’d had vaccines & other injections were throbbing. And I was slurring my words. Desperately trying to keep calm in an online work meeting that afternoon, I had to confess that I hadn’t had a couple of gins at lunchtime, but this was a side effect of some new treatment that I was having. Now I take two weeks off when I have the infusion. It’s impossible to work through the side effects.
The bone pain in my forearms & lower calves was horrendous. I believe that I can tolerate a lot of pain because of the chronic, long-term pain that my impairment causes, but god, this pain was like someone had taken hold of my forearm & was trying to snap it in two. Feeling sharp pain in my shins & foot in my left leg was a revelation because I’m paralysed here & I don’t normally feel much of anything. With this level of pain, it’s hard for me to understand exactly how this treatment is meant to be protecting my bones because it honestly feels like the Alendronic Acid is breaking them down, bone by bone.
I probably should be taking a short-term dose of morphine for this level of pain, but anything from tramadol, to pregabalin, to gabapentin, to buprenorphine patches just really stresses both my mind & body out, so I just regularly top up with some strong codeine & I also use a small regular dose of amitriptyline for neuropathic pain for two weeks. It isn’t great I know, but you have to find what works for you personally & try not to let others belittle your pain if you aren’t taking anything stronger. And if you need something stronger after these infusions, I encourage you to ask for it because I don’t believe anyone should suffer in indescribable pain.
On my second treatment, I asked one of the nurses if the side effects would improve as my body became used to the infusions. She said “no” & looked at me with kind eyes. I’ve just got to suck it up, then.
I know that exercise is a terrible cliché that medics often use to beat people over the head with, & exercise is hard to do when you’re disabled (don’t @ me with your Paralympians, they’re elite athletes!) but regular exercise really does help me. More than ever before, my bones feel so stiff & heavy. I think I’ve mentioned in previous blogs that I’m having issues with my right ankle & at times, I can barely stand to transfer, but after each infusion, I have issues bending my thumbs & fingers & I struggle to fully grip things; I have severe pain whenever I flex my wrists & elbows. But I’ve found that swimming really opens up my body. I really look forward to my weekly swim now. I struggle to do yoga just after the infusion, but in a week or two, I’m usually back to my regular class. I think that gym-work is tough, so I normally give that a longer pause before returning to a regular routine. I have a little set of 1kg weights at home, but I don’t use them for a month or so post-Alendronic Acid.
Post-third Alendronic Acid infusion & today, post-Zoladex injection, I’m trying to stay cool in the 30 degrees centigrade of West London. I’m well out of the sun & typing away at my laptop in the coolest past of the flat, the lounge. Extremes of very cold & very hot weather are equally hard to deal with during treatment, so I just do a little bit of this & a little bit of that, until I feel like I can do more.
Just putting one wheel in front of the other & slowly moving forward, that’s the best way to do it.
P.S. Paul from Chemo Unit, if you’re reading this, I’m missing you, I hope it’s all going well in your new department!
Me pictured with Margaret from Imperial Hospitals Trust, at my third Alendronic Acid infusion, 6 West, Charing Cross Hospital, London.
Alt Text:Two white woman wearing surgical masks sit in a hospital bay. One of the women is hooked up to a drip via a cannula in the back of her left hand.
Part of returning to life ‘After B.C.’ (Breast Cancer) is going on holiday outside of the UK.
Alt Text: A selfie of a white man & woman, taken at an intersection of the road with a statue in the background (it’s Bastille, Paris). The man is wearing a grey, flat cap, tortoise-shell rimmed glasses, a blue denim jacket & a blue/grey t-shirt. He is smiling. The woman has long, curly brown/blond hair & she is wearing brown/pink rimmed, round glasses, a white mask & a metallic pink rain jacket.
Going on holiday can be a major undertaking as a wheelchair user, especially overseas, but I wondered how complicated it would be post-COVID (i.e., extra checks for vaccinations, etc.), post-Brexit (my partner is French & has E.U. Settled Status) & post-surgery/radiotherapy. But after two years of watching how countries were slowly opening their borders & getting used to my new diagnosis, I decided that the best way to find out was to actually go on a holiday outside of the UK.
I started with the easy option. All of my partner’s family live in, or around, Paris & we’ve frequently travelled by Eurostar. As we’d been separated from them for a couple of years, we were excited to be able to see them.
It was too early into diagnosis for me to comfortably fly anywhere. I’ve got many personal stories of being left stranded on planes, nearly missing planes because assistance arrived late, my wheelchair being broken or lost, & inappropriate questioning &/or comments about my impairment by airport staff &/or cabin crew. And all of this happened way before COVID-19 temporarily shut down the air industry. I couldn’t face being manhandled by staff from wheelchair to aisle transfer chair to plane seat, & vice versa, because of the pain levels that I’m currently experiencing due to medication.
In contrast, I love travelling by train & if I can choose this option over flying, I will every time. Plus, it’s more environmentally friendly. Of course, the train isn’t without its problems, such as luggage blocking the wheelchair space, the accessible toilet being out of order, or being left on the train or missing the train because ramp assistance hasn’t been provided. But I’ve always had a great experience on Eurostar, including as a frequent lone traveller.
I always book in person at St Pancras station (London) rather than over the telephone or online because I prefer the face-to-face communication when I’m trying to explain my access requirements. Booking was easy & not much of the booking assistance process had changed in the past years when I hadn’t been able to travel to Paris. The agent showed us on his phone how to download the NHS COVID-Pass App which was the only unfamiliar thing that we had to do. Even my partner’s E.U. Settled Status was straightforward when booking. The only minor blip came when I got an email to say that my train had been cancelled & new tickets had been issued to via online booking which had been set up for me. After faffing around with that for a while, I saw that our tickets were exactly the same as before – a relief because I can’t travel without being allocated the designated wheelchair space.
Travel out to Paris was hectic, but it did go smoothly, considering the situation we had found ourselves in. When we arrived at St Pancras, I’d never seen so many people queuing to get through security; the queue was so long that it was coming out of the station. Luckily, travellers needing assistance can queue-jump but when we reached the assistance area, there were more people than I’d ever seen waiting for support. It turned out that we’d booked to travel on the same day as the 30th Anniversary of Disneyland Paris opening. And here was I, thinking I was clever for booking a holiday during school term-time! However, there were many Eurostar personnel on hand to help, so we managed to get through all checks very quickly. The only long wait was to board the train; our train was delayed as it was taking longer to on-board all the families for the Disneyland train. Yet our Eurostar staff member stayed with us on the platform until the train doors opened & we were handed over to the train staff. Being abandoned for hours without assistance at airports & train stations was a big reason for me to stop travelling on my own.
The delay in getting on the train was the first time on the journey that I started to get fatigued. Due to my impairment, I move around frequently in my wheelchair, but now because of the Breast Cancer surgery & the side effects of treatment, I find sitting for extended periods without stretching out my arms & legs, really painful. When it came to pushing myself up the ramp, I couldn’t do it; I needed extensive help but once onto the train & into the wheelchair space, I could stretch my legs out & have a sleep.
The trains have been modified since I last travelled & they’re more like UK trains now – a bit less luxurious – I have to be honest – but actually I had more space to move around & the route to the accessible toilet was much clearer. It seemed to me as if there were a couple more wheelchair spaces (always in the Business Class) per train, but I couldn’t be entirely sure.
I was also relieved that we still got a meal on the train (& very often the meal is very nice). The Eurostar train staff are always really helpful & check that you’re ok – I do appreciate this. I can’t travel alone in standard carriages on UK trains because I haven’t got any means by which to get to the restaurant carriage. I even if I could get there, that wouldn’t be an option for me now; currently I don’t appear to have the strength or dexterity to negotiate tight spaces & I often drop things that I’m carrying because the nerves in my hands are messed up. That loss of grip in my hands & my balance being even poorer ‘After B.C.’, made going to the loo almost impossible. I don’t really know how I didn’t fall to the floor when I was transferring, or even off the toilet itself mid-wee (lol!). I was sweating when I came out of the loo due to all the energy that I’d used up just to do this simple task!
Post-cancer diagnosis, I have stronger anti-sickness tablets & these were a game-changer for me during the journey. Usually, I have to face the direction that I’m travelling in (& even then, it’s no guarantee that I won’t be sick!) but for the first time, I was completely fine travelling backwards.
Once we reached our destination, Gare du Nord, Paris, the staff were already there with the ramp on the platform (as they should be on every journey, anywhere in the world!) & a staff member, recognising that I was tired, helpfully pushed me to the taxi rank (a little fast & a little close to the platform edge for my liking, but he was determined to whizz me through the crowds, lol). At Gare du Nord, disabled people go to the front of the taxi queue, but it’s always chaos as the taxis come in & staff literally hustle you into one. It really is like that, being hustled! You’re swept along with staff, taxi drivers & confused passengers with a lot of raised voices & wild arm gestures. I’d so missed this!
My partner & I had started speaking in French as soon as the train crossed the border. Although I have a degree in languages & my conversational French isn’t too bad, I was worried about how much my menopausal brain would screw up & I’d be coming out with some random, nonsensical words. There were instances of this across our stay, mainly in the evenings as I experience a lot of fatigue then, but on the whole, I surprised myself at how much I could remember.
Like my partner, I’m a creature of habit. After thinking carefully about whether I now needed a bigger accessible ‘wet room’ (a bathroom without a step to the shower, without a bath) because of my reduced mobility, but we decided to book again with our favourite budget chain hotel in the 11th area of Paris. The accessible room & shower are probably too small for people who use larger wheelchairs & who may need a hoist, but I’m happy to report that the facilities were still manageable for me. And it’s a home from home – most of the hotel staff were still there from our previous visits & we were incredibly happy to see each other again.
We spent five days in Paris. It was the perfect amount – enough for us to see all the family & have some time by ourselves too. I was anxious about how tired I would get each day, especially in the evenings as most nights, I’m lucky if I stay awake until 9pm. I knew we’d be occupied all day & then I’d have to get ready to go out to eat in the evening, without much, if any, rest in between. And understandably I didn’t want to miss out on anything or have to stay back in the hotel room. I only had one “OMG I CAN’T DO THIS, I’M SO F****** TIRED!” one evening, but after a little rest, I was able to muster the strength to eat late at a nearby restaurant. One morning I overslept, so my partner brought some breakfast back to our room, so I didn’t have to rush to get ready. I found that exploring places & being out of my usual routine kept me energised – I mean, who doesn’t find Paris fascinating! And of course, it was so lovely to spend quality time with family once again, & to meet my partner’s great-niece for the very first time (an adorable moment!)
Of course, Paris has its challenges because it’s an old city. It’s also being refurbished & cleaned in preparation for the Olympics & Paralympics 2024 so there is a level of disruption. There’s never been many wheelchair-accessible toilets (I’m hoping that this changes during the course of the refurbishment!) & I tend to plan sightseeing around where I know there is a toilet that I can use; they can be found at most of the large tourist attractions, art galleries & museums. But if you like to go to places off the beaten track & fully adopt the Parisian café culture like I do, then finding suitable toilets is trickier, & the only option is to limit your fluid intake. This really isn’t a great thing to do.
I got ‘caught short’ once at Parc de Bercy in the 12th. It’s pretty modern around there & has undergone a redevelopment similar to Granary Square (Kings Cross, London) but the lift to the cinema which houses the accessible toilets was broken so we had to wander around for a while in search of an appropriate toilet. Out of the corner of my eye, I spotted a wheelchair symbol through the open doorway of a modern Japanese restaurant, so we stopped there for a drink & to use the facilities. However, I guess some aspects of inaccessibility are universal because the accessible toilet was narrow & baby highchairs were being stored in there!
Public transport can be tricky in Paris – I’ve used the buses (there are wheelchair spaces on board), the taxis (but often my style of wheelchair is tricky to fit into the average Parisien taxi) & the RER (this is the mainline overground train system & the ramp access is managed by the train driver – so much more efficient) but mostly my partner & walk. Paris has grand, wide pavements that don’t get too crowded & if you walk into central Paris by the river Seine, passing Notre Dame Cathedral, it’s so beautiful.
In case of any detailed explanations that I may have needed to give, or any emergencies, I’d practiced saying “I had breast cancer, radiotherapy, no I didn’t need chemo” etc in French but apart from the tiredness & having to scrutinise the menus for any food allergies, e.g., mushrooms (anyone else having that issue? My sister couldn’t keep down mushrooms either whilst in treatment!), thankfully I didn’t need any of those phrases.
I cried on the morning of our return. I’d missed all the family & the beautiful city so much. Anxieties started to creep back into my mind: “What if this is the last time that I visit Paris?” Always so much to process & so many irrational thoughts to dispel.
The UK Customs guy at Eurostar Paris made it worse for me by barking: “Where do you live?” I so wanted to say “Paris, thank God!” but instead I replied: “London” to which he then asked why I’d been there. “On holiday!” I replied even grumpier than ever. In fact, I almost said: “So are you going to deny me a bloody holiday as well after all this Brexit shambles?” He pursed his lips & let me through, thankfully, as I was already over-tired & in increasing levels of pain. Note: My French partner got no questions whatsoever from either French or British customs – he was really worried about this. We were also able to stay together at all times during all the security checks, despite having passports issued by different countries which was a huge relief to us both because I need a lot of help from my partner.
But my holiday ‘After B.C.’ had passed successfully, so now I know that I can holiday outside of the UK. TICK!
A rare moment where my personal & professional gig-going life comes together in one blog!
Alt Text:A selfie of a white woman with long brown/blond hair, wearing red/brown rimmed glasses & a black puffa jacket with a fake fur hood. She is outside a music venue. Above her head is the venue’s sign which says: ‘The Mission 22nd April.’
Let’s face it, I’ve been to a special hell & back in the past two years. I’d like to think that I was pretty resilient, but I’ve been tested mentally & physically to the max, especially around monthly treatment times. That’s why I’m not too harsh on myself when I get ‘off’ days, you know, those days when you have to stay home & rest. Sometimes being disabled has felt that I’ve been clinging onto life, a bit like I was scrabbling around in the dirt with my hands, trying to get a grip so that I could pull myself up. But once I’d had the cancer diagnosis, it got way harder – now it feels like I’m at the cliff face with my legs dangling as I struggle to put one foot in front of the other. Legs dangling, hands scrabbling, not fun.
But now I’m having less difficult days. Slowly but surely, I’m doing more which is quite positive. However, something happened last month when I had to really challenge myself to see if still had my adventurous streak.
I’ve always been quite a daring person. I like to surprise people. I love doing the opposite of what others think I should do & I love proving them wrong. I think quite a lot of disabled people are like me in that respect because the majority of us are sick of the public’s poor perception of us. But what’s increasingly evident is that my adventurous streak always wanes when I have bouts of severe poor health. This is because they’ve coincided with a change in mobility levels.
The aging process speeds up when you have an impairment. I frequently joke that I was the only kid at school who ran the 100 meters slower each year until I was so useless at PE, that I swapped this lesson for extra music & art lessons. I didn’t walk until I was about 4 – great timing as I was just about to start at the local primary school. I first started using a wheelchair when I was about 25/26. I don’t exactly remember because it was a slow transition & actually quite a relief because my feet were all busted up & I was in so much pain that I was blacking out. But of course, being a wheelchair user isn’t easy because of all the physical obstacles (I mean, what d***head invented stairs?) & people’s negative feelings about being in a wheelchair.
But when I first started using a wheelchair, one of my disabled neighbours lent me one of her lightweight wheelchairs to use & I found this so easy to push (unlike the heavy, ill-fitting chair that had been issued by the Wheelchair Service). I’d also saved up & bought my first electric wheelchair. I realised that I could have my independence once again. The wheelchair epitomises freedom & don’t let non-disabled people tell you otherwise. When I first went out alone in my electric wheelchair, shopping for clothes on Kensington High Street, my jaws ached when I got home. This was because I hadn’t smiled that much in a very long time!
Anyhow, I digress, back to the challenging moment.
I’m currently finding it hard to manage my increased pain levels. My bones were rubbish in the first place & now they’re being further obliterated by the cancer treatment. I have my alendronic acid infusion every 6 months, but this is like torture! Seriously, it’s like my bones are actually breaking apart the next day, along with delightful side effects such as slurring my words, my teeth killing me & having flu-like symptoms. This lasts a full two weeks. So what with my creaky & painful bones, I’m struggling to use my right leg & foot at the moment, which is a serious barrier. My right leg actually works (my left leg is paralysed from the knee down) & I rely on it for all my ‘stand & transfer’ manoeuvres (a transfer is when you’re moving from bed to wheelchair, from wheelchair to sofa, etc.). It’s a complete nightmare & I have no idea how long this leg thing will last…forever…?
I had a run of gigs at Shepherds Bush Empire in one week. I was looking forward to this because gig-going is my favourite thing to do. In fact, I love it so much that it’s actually my job – honestly! 22 years ago, I founded a charity called ‘Attitude is Everything’ which connects disabled people with the music & live events industries to improve access together. It does sound like a made-up job, doesn’t it? I can assure you that it isn’t, I set it up because I didn’t want disabled people to struggle when they’re trying to enjoy music like I did in the olden days.
Shepherds Bush Empire is my nearest wheelchair accessible venue & it’s one that I can easily walk to & back from, well let’s say roll to & from, very easily in my electric chair. Once I’m there, the security show me round to a side door & then I’m in. Bingo!
At the end of my little run of gigs was The Mission weekender. They’re always storming gigs & it’s a chance to break out the teenage Goth in me – I love, love, love Wayne Hussey & The Mission. I always see them with my best friend from school. Unfortunately, he wasn’t well for the first night, so I made the decision to go to the gig alone. I weighed up the pros & cons for a little bit. In reality, I didn’t have any cons because I’d made the journey to Shepherds Bush Empire & back home again after seeing the Mystery Jets gig on the Tuesday night with another friend. I didn’t get too tired during this gig; I could physically cope inside the venue. There were many other pros too; my trusty old chair could still do its top speed (you have to believe the thrill & power I get when hurtling down the pavement, thrusting the joystick & seeing the people scatter before me), The Mission fans are kind & friendly; many of them have been following the band for years so I knew I’d recognise a few faces. The security at Shepherds Bush Empire are supportive & welcoming. The only doubt in my mind was about my leg not working & how tired I might get during the gig.
But it felt right to strike out for freedom. What I’d enjoyed about my walk back from the Mystery Jets was being alone at night, having that space to myself, breathing in the night air, the emptying of my mind.
Because I’m disabled, these moments of being alone are rare because I spend a lot of time with people who assist me (they’re lovely, I’m not moaning about this) & I live with my boyfriend (he’s lovely, we have a great laugh living together). But everyone needs ‘me’ time. As a child & teenager, I spent long periods amusing myself & as an adult, I still need regular ‘time out’ from others.
Going to see The Mission on my own would give me the chance to prove to myself that I could still rock up at a gig, enjoy my own company, possibly have some friendly banter with strangers, & then roll back home.
I’ve had many nights staggering home or taking in London at night from the back of a cab, feeling absolutely free, feeling like the Queen of this city, feeling like it belonged to me, following the Thames to get home, criss-crossing over the bridges.
So, I charged up my chair, got my Goth gear on, gave myself a big hairdo & off I went to The Mission gig.
Once I got to the venue, I was greeted by many beautiful human beings dressed in black, all of my age & older, & very, very visibly excited to see the band. I recognised a few faces from the Killing Joke gig which was a week or so before. In fact, I was wearing my Killing Joke t-shirt from that same gig. I exchanged some friendly words with a lady who I’d spotted giving out fliers there, & now she was at The Mission giving out fliers. She also very helpfully told me that there were still tickets left for Gary Numan, so I saw him at Wembley just after The Mission, too! Killing Joke, Gary Numan, The Mission – yeah right, so I’m THAT old but are you all still punking it up nearly every night like me?
I quickly checked with the box office to see if it was alright ‘health & safety-wise’ to be alone at the gig in my wheelchair. “If you’re happy, then we’re happy, & we’ll help in any way we can,” was the reply from the lady at the box office which was mightily reassuring. Then I found the security guard who let me in. Once inside & one sharp handbrake turn to the left, I was in the viewing area. The accessible toilet, the bar & the merch stall were all nearby – what more does a girl need? Naturally, I went straight to the merch stall for my first lot of banter for the night – all about previous Mission gigs, new t-shirt designs, merch in general, etc.
The gig was amazing. There was another disabled couple on the viewing platform who were absolutely lovely & someone else offered to get me a drink. Others around asked me if I was ok. A couple of security guys were keeping a close eye, but they weren’t at all intrusive (one of them had the ‘Radar Key’ which opens accessible toilets but I carry my own & when questioned by security, I pull out the Radar Key with the desire to shout, “ah-ha, Sir, but I have my own,” as if we’re in some kind of crazy duel. Or I’ve got “I’ve got the key, I’ve got the secret…” running around in my brain – only ravers of a certain age will get this!) The couple on the viewing platform absolutely went for it when the band came on & so did I. I was singing my heart out; their energy & adrenaline gave me energy too. It also meant that I was able to stop other people from clambering in front of me & over me – they couldn’t get anywhere near me because I was dancing in my big, fat, sturdy chair. To get near me would have resulted in a clonk from one of my flailing arms or crashing into my beast of a chair & coming off worse. Ha! What a top night I was having!
Then all too soon it was over & I found myself on the pavement in the night air. I hung around for a bit, still dazzled by the lights & music, breathing in the scene before me of deliriously happy Mission followers. But knowing that I was going to experience it all over again tomorrow (with my best friend), the crowd was thinning out & my leg was starting to hurt now that I wasn’t distracted by the gig, I started to make my way home.
So, I’d got over that hurdle. Going to local gigs on my own once again. Thank God, I’m starting to really live, I owe that to myself if nothing else.
Alt text: A selfie of a white woman with long brown/blond hair. She’s wearing red/brown rimmed glasses, a white mask with a black & white sequinned mask on top if it, a necklace of a small back wooden cross, a black t-shirt with a red & orange flame on it & a black velvet hoodie. She is inside the venue which has red painted walls.
Alt text: A selfie of a white woman with long brown/blond hair, wearing red/brown rimmed glasses, large silver hoop earrings & a black puffa jacket. Behind her are trees & a couple of low-rise tower blocks, with building cranes with red & white lights, reaching up into the sky. This is one of her journeys’ home from Shepherds Bush Empire.
I’ve come to the conclusion that I’m not going to enjoy February & March like I used to. Here I mark two years on from diagnosis & reflect on celebrating International Women’s Day as a disabled woman.
Alt text: A white lady with brown-blond long hair, dressed in a black puffa jacket with a fake fur hood, sitting in a wheelchair outside in the garden. She has a pair of black-rimmed glasses perched on the top of her head. She is holding a mug of tea & she is smiling.
I’ve been absent from blog-writing in the month of March. It’s fair to say that I’m probably not going to enjoy both February & March for the rest of my days. Thursday 10th March marked two years since I was diagnosed with ER+ Stage 1 breast cancer. If that wasn’t mind-bending enough, February is the month of my annual mammogram (I received the all-clear, thank God) & I have my annual review of my lungs by Brompton Hospital (they’re working very well & don’t appear affected by the partial radiotherapy treatment or two bouts of COVID-19). Mega #Scanxiety. In March I had my telephone review with my Oncologist & I also met my new consultant who supports me to manage my existing impairment. That’s quite a lot of nervousness to manage & new information to process.
Don’t get me wrong, things could be a lot, lot worse, but now the cancer treatment is taking a heavy toll on my already-weakened joints & bones. Of course, I’m not going to give up the hormone therapies, but it’s not the treatment that one would choose to give to somebody with damaged bones, & who was already on the cusp of osteoporosis before cancer appeared. I’d be lying if I said that I wasn’t daunted by what my mobility levels will be like in 10 years’ time when all this treatment finishes. And true to form, I’ve internalised most of it & just pretended that it isn’t happening. When I have tried to describe what I’m going through, members of support groups & my medic teams are all equally non-plussed about how to help me in the long-term because they haven’t come across many disabled people in my situation.
The main issue at the moment is that my right leg, ankle & foot isn’t working properly & I’m in excruciating pain. This is a disaster. I rely on my right leg to transfer, to drive & to balance. ‘Plantar fasciitis’ (google it, kids!) has been suggested. A sharp increase in neuropathic pain is coupled with an increase in the nerve pain relief & a reduction in anti-depressants (yes, my mental health took a dip at Christmas). Other regular pain relief doesn’t touch the sides. I’ve been on morphine patches in the past for chronic pain caused by my disability & I don’t want to resort to patches again as I feel that they changed my personality for the worse. These days I swim much more & do what yoga that I can – & this does bring some relief.
This is tough. If I find any answers or even words of wisdom, you’ll find them written in my future blogs! The only thing for sure, is that I need to continue my quest in finding disabled people who then receive a cancer diagnosis. I mean, how the f*** are you coping?!
Within this tumultuous month is always International Women’s Day (Tuesday 8th March). Along with many other women across the globe, I celebrated it, just like I celebrate International Disabled People’s Day (3rd December). These days of celebration & reflection carry extra meaning now I’m a disabled woman living with a breast cancer diagnosis.
Of course, my gender, sexuality & sensuousness continue to be unrecognised because I’m disabled.
Here are two golden nuggets that demonstrate the general population’s ignorance:
I’ve gone into detail about this in a previous blog, but whilst discussing surgeries, one consultant (not one that I ever met or was involved in my care) suggested over the telephone that I just have a mastectomy instead of a straightforward lumpectomy (standard for my diagnosis / prognosis) because it would be “easier for me to cope with.” I found this very demeaning because this medic didn’t recognise that I’m as vain as the next person, nor did they respect my needs or desires; they didn’t consider that I might be in any sort of relationship, or the emotional impact of potentially looking more disabled than I already am. And it’s always the ultimate “does (he or they) she take sugar?” moment when someone makes a decision for you that doesn’t involve you in the process.
In my twenties, I had a GP that was reluctant to refer me to a gynaecologist to discuss different contraception options because I was “obviously sexually inactive.” This GP was so very, very wrong in their assumptions. I persevered & once I did get referred to a consultant, they helped me to resolve many gynaecological issues that I had been suffering with in silence. More importantly, they never made me feel less of the woman that I was.
Society is fond of putting people into little boxes & labelling them. But like the sections in record shops that attempt to categorise music by genres, it’s complicated. I’ve spoken to a lot of disabled women who also have other ‘protected characteristics’ & we all agree it’s a case of “which box do I tick today?” But all of tick several boxes, me included. Alongside ‘disabled’ & ‘woman’, I tick the boxes of ‘punk’, ‘goth’, ‘from a single family’, ‘working class’, ‘Essex’, but often it feels that I can’t be in several boxes at once.
Around about 2017 / 2018, the industry in which I work very kindly started to recognise me as an achieving woman in the sector. I was thrilled about this & very appreciative of the award & accolades that I was given. I’d been speaking on disability issues for years & this is the strongest part of me; I take such enormous pride in identifying myself as a Disabled Person. Yet I’d never been asked to speak on women’s issues nor received any awards for a being a woman. Then I found myself in a bizarre situation at one event where I was nominated for one such Woman’s Award, but the ceremony was being held in an inaccessible venue, so I couldn’t get in to receive it. It’s like overnight, my disability & my access requirements had been forgotten. That’s why I feel that I can’t be in several boxes at once.
The impact of society not recognising that I’m both disabled & a woman comes full circle. If it’s felt that disabled woman aren’t going to be affected by common women’s health issues, then those services will never be offered to, or be accessible for, disabled women. And if medics don’t treat disabled women for a number of common women’s issues, then they won’t have the knowledge of how to design an effective treatment plan for women who have a number of complex & underlying impairments.
And that, folks, is where I currently find myself.
Alt text: A white woman, dressed in black & wearing black-rimmed glasses, sitting in a wheelchair, is outside a hospital entrance. There are several people walking in the background. Above the entrance hang several, large heart-shaped garlands, made out of dried flowers in rainbow colours that symbolise the NHS (UK’s National Health Service).
What’s it like having a mammogram when you’re a wheelchair user? Not easy! Warning: some of the frank descriptions within this blog may cause embarrassment or be upsetting.
Alt text: Two lemons on a metal cooling stand. One lemon is positioned straight ahead whilst the other is positioned side on.
Two weeks ago, I went for my annual mammogram. I’ve had many mammograms because I’ve been a patient at my local Breast Cancer Family History Clinic for years. But since my breast cancer diagnosis, mammogram results carry far more weight. Every cancer patient knows that they’re only as good as their last scan.
I got the results of my scan mid-week & thankfully there’s no evidence of cancer. This is my second all-clear since my surgery & radiotherapy so it looks like the treatment is working.
It’s difficult for me to have a mammogram because I’m disabled. Over time, I’ve worked out a way of being scanned which involves short bursts of propping myself up on my feet. However, this time around I was worried because I’m experiencing lots of sharp pain in my feet & ankles (probably increased neuropathic pain from the medication that I’m on, but I’m still going through the process with my consultant to determine this). I’m experiencing excruciating pain on the bottom of my right foot, and yep, you’ve guessed it, this is the leg that isn’t affected by my impairment. It’s the leg that I rely on to do all my transfers safely and to drive with. I thought that the surgery & radiotherapy would seriously affect my right arm (it hasn’t) but who knew that it would affect my right leg?! You can’t make this s**t up. My faithful right leg didn’t let me down though & the mammogram passed without too much incident.
I can’t stay in my wheelchair to have my mammogram. Although the technology of the scanner has improved over the years because the plates can go lower, this still isn’t low enough for me. Therefore, I have to make some very precarious manoeuvres in order to get the scan done.
I bet most people wouldn’t even guess that disabled people often don’t get access to routine scans & tests that affect the general population. Sometimes it’s because GP’s & other medics have this weird notion that we won’t need them because somehow our existing disability makes us immune to cancer or other diseases. Or it’s because the way that the test or scan is given is inaccessible & we’re not offered any alternative ways to have the test or scan.
I’ve experienced being blocked for routine tests before & it’s exhausting trying to push back against these attitudes. It both scares & angers me that I could be denied routine tests & scans that are readily available for the non-disabled public without question.
Sadly, I also think that disabled people & their families can have a lack of awareness that common diseases can affect them too, or that they feel that they don’t have the power to challenge the ‘status quo.’
At one early mammogram, I nearly didn’t get past reception because as soon as the receptionist saw me wheeling in, she boldly exclaimed “You shouldn’t have been given an appointment today, we do people like you on Mondays because you take so long!” People like me indeed. I was as rude to her as she was to me. I told her that I’d had mammograms in the past & that I’d worked out a way of safely having them which works for both me & the radiologist. I rounded off my diatribe by informing her that I take up no more extra time than the average person because the radiologists were used to scanning me. At that point, the radiologist rescued me before a full-on row broke out. But joking apart, it’s these kinds of attitudes that can put the most resilient of disabled people off, let alone the humiliation of being spoken to in such an inappropriate way in front of others in a packed waiting room.
On the whole, radiologists are supportive. Most of them have a mini freak-out when I enter the room in my chair, & I think that’s a normal human reaction. I’ve found that if I tell them that I’ve had a lot of mammograms & I’m very used to what happens, it puts them at ease. However, on rare occasions, I come across radiologists that don’t like the situation at all; I guess it might be because they think that I’m challenging their authority, or they might be trying to get through their patient list as quickly as possible – who knows the reasons why. However, the radiologists that don’t listen to me are usually the ones that hurt me. It’s silly really; it makes more work for them because the scan takes longer – I have to take more rest time during position changes to settle my pain.
I don’t like it when there are two staff members in the room. I find that it makes communication more difficult because then I’ve got two people to reassure. There’s also more of a likelihood that they’re going to talk over me which I find hard to manage.
Whilst with a difficult mammogram the radiologist might put it down to a “one-off” experience & be able to move on quickly, in contrast, I’m left struggling with how I’m going to manage my emotions over what’s just happened & how I’m going to mentally prepare myself for the next scan.
‘Same old’, as they say.
I didn’t know how hard having a mammogram was going to be until I first came face-to-face with the scanner & I had to do improvise on the spot. But then like many disabled people, I’m used to improvising.
The method of being scanned that I’ve perfected goes something like this:
I lever myself out of my wheelchair & position one boob as best I can on the metal plate (& why is the plate always freezing cold!) Then I put one arm around the side of the machine to hold on, & the other arm around the other side of it, but lower down so that my shoulder isn’t in the way of the plate. The final positioning is bending my legs & balancing precariously with them apart, hoping that they don’t start to spasm, or even worse, give way beneath me & leave me dangling by one of my boobs! I can barely hold this position, so I tell the radiologist to run round to her booth as quickly as she can to take the image. After the image is taken, she comes running back to release me, & I collapse back into my chair, breathing heavily. I drink lots of water in between.
These crazy manoeuvres are repeated at least 3 times more times. Quite frankly, I’m amazed that I’ve never been left hanging by one breast!
Two of the positions are particularly hard for me. My sternum protrudes because of my scoliosis so scans on the right side (yep, the side where I had surgery!) literally leaves me gasping for breath. The radiologist has to be quite skilled in knowing how far she can push the plate against my sternum in order to get a good image. The other one difficult position is on the left where I have a bit of rib sticking out due to my displaced hip. Often this part of the rib gets caught underneath the plate if I position myself incorrectly.
My shoulders getting in the way is a real pain. Some radiologists deal with this by pushing my shoulder down. Unfortunately, by taking this approach, rather than letting me gently lower my shoulder into position, I can’t adjust my feet quickly enough & I find myself going off-balance. It’s worse if it happens on the right-hand side because the metal plates pinch my right boob very hard. This is very painful as I’m still sore here two years on from surgery. It’s so frustrating when I know that it doesn’t have to be this hard to scan me, & it doesn’t necessarily have to hurt me, either.
I can understand that upon reading this, you might think that this is quite an ordeal to go through. Well, yes, it is, but it’s so necessary. Over a decade ago, an annual mammogram detected non-malignant cysts & two years ago, the annual mammogram detected a small cancerous lump.
I hope one day that the machines will be flexible enough to cope with a multitude of body shapes. And there’ll be alternative & more comfortable ways of scanning disabled people.
Meanwhile, I hope that my right leg, or my ‘transfer’ leg as I call it, stays strong enough over the next 10 years to cope with keeping me in position for the mammogram, even if the entire process is a bit wobbly!
So, what advice would I give other disabled people about having a mammogram? I wouldn’t recommend throwing yourself in at the deep end & dealing with the situation on the spot like I did. I’d encourage you to talk it all through with a breast cancer nurse, a consultant & the radiologist so you can work out with them how you’re going to be scanned or if there are alternative ways in which you can get your breasts checked. And if you’re ever blocked from getting a routine test or scan, ask for a different medic on the team to be assigned to your case (I know that isn’t easy) or get a 2nd opinion. If you feel strong enough, or if you’re foolhardy like me, then share what’s happening to you on social media, or in the cancer charities’ online forums. People are generous with responding with their own experiences & with helpful advice.
Whatever happens, you have a right to these routine tests & scans, so please don’t give up.
Hello 2022 – it must be time for the 64 Million Artists’ Daily Challenge (again!)
Alt text: a piece of corrugated cardboard roughly cut into a square. There are 4 images drawn in black felt tip pen connected by directional arrows – a DAB Radio, a vinyl album, a turntable and two gig tickets.
Last January, I signed up for a series of daily creative challenges with an arts organisation called 64 Million Artists – www.64millionartists.com I found them on Twitter & I haven’t looked back since. #TheJanuaryChallenge is a unique set of daily creative actions, designed to be easy & to be created from what you have ‘to hand.’ This year, there are 3 themes:
We Are Human
We Are Culture
We Are Connected
You can either choose one theme to follow throughout the month, or you can choose the ‘Wildcard’ option like I did – then you get a different theme every day. Each Friday, the three themes combine into one challenge. The challenge ideas are set by different creative individuals around the UK & anyone can apply beforehand to set a challenge. You’re invited to share your work using the hashtags #64MillionArtists & #TheJanuaryChallenge & also tagging @64M_Artists (Twitter)
2021’s January Challenge was quite an effort for me because I was just embarking upon my creative journey. Additionally, I was still recovering from my cancer surgery & radiotherapy, but I also caught COVID on 10th January, so I spent 10 days holed up in my bedroom, creating the daily challenges from what I had around me. I believe that I triumphed with replicating the Himalayan Mountain range from my bedclothes & pillows, LOL!
In late December 2021, my phased return to work finished, so during weekdays, I’m fitting my daily challenges into my lunch hour.
Similar to last January, I can’t do much in my birthday month because I’m in semi-isolation, as are most of my Capricorn friends. We’re saving our birthday meet-ups for warmer times, so #TheJanuaryChallenge is a great way of making the time go faster & jump-starting my brain in 2022.
I also need to occupy my mind because I have a couple of preventative cancer treatments this month. Alongside my regular monthly zoladex injection, I have my 6-monthly infusion to protect my bones in the Chemo Unit at Charing Cross Hospital, London. There are more needles that I care to have during this month (I’m needle-phobic). This is only my second infusion so I’m anxious about what to expect. The side effects were horrendous for the first one – the infusion caused severe pain in my bones & gave me flu-like symptoms. I’m being kind to myself this time around & I’ve taken a week off work to practice self-care.
As I’m now on the 17th day of #TheJanuaryChallenge (time flies!), I’m sharing a mini-selection of what I’ve created – & why – in a random order:
Photo 1
Alt text: a selection of different sized & coloured badges laid out on a faux fur bedcover.
Theme – We Are Culture – Day 4 ‘Lost & Found’ – this was all about what you collect. I collect badges. The photo shows just a very small sample, selected at random from a much large collection. They’re from charities & causes that I support, to bands I like, to slogans that ring true to me.
Photo 2
Alt text: a miniature green succulent plant in a white pot & a miniature white toy pony with a purple mane & tail are placed in front of an acrylic painting – a desert scene with mountains in the background & the sun high in the sky – in colours of pastels, oranges & browns.
Theme – We Are Human – Day 8 ‘Land Art’ – I chose objects from my room that lay 3m around me. Luckily my boyfriend’s unfinished painting gave a backdrop to my fantasy desert land!
Photo 3
Alt text: a montage of 4 photos – top LH is a cut out recipe from ‘Elle’ magazine (a French edition); top RH is the accompanying photo for the recipe of little cakes decorated with chocolate icing & each has a single yellow ball on top; bottom LH is a photo of a poem written on a blackboard about creating a recipe for 2022 “A touch of positivity, plenty of good friends, an abundance of laughter, don’t skimp on the music!!!” & bottom RH is a recipe for Strawberry Whipped Cream Meringues printed out from the internet.
Combining the challenges of Days 5 & 6 here; the theme of We Are Culture – ‘Vision Board for 2022’ which was written on my kitchen blackboard, then followed by the theme of We Are Connected – ‘Kitchen Stories;’ when I shared my favourite recipe for meringues (a recipe which was made for me by one of my closest friends) with my boyfriend who, in turn, shared his favourite childhood recipe with me. It was cut out from a French edition of ‘Elle’ magazine from many years ago – Barquettes de Marron. He would cry if the yellow icing ball was missing from the top of the little cake.
Photo 4 (& cover photo)
Alt text: The image is also the cover photo for this blog – a piece of corrugated cardboard roughly cut into a square. There are four images drawn in black felt tip pen connected by directional arrows – a DAB Radio, a vinyl album, a turntable and two gig tickets.
Theme – We Are Connected – Day 3 ‘Connected’ – this is what connected means to me; how the radio connects me to artists that I grow to love through their music & eventually I see them play live.
Photo 5
Alt text: a montage of two photos – top: a blue hyacinth in full flower stands on a white metal table, outside in the garden; bottom: white lined paper with a haiku (Japanese-style short poem) written in blue biro – “The hyacinth stands tall, Apollo’s love enduring, Heartbreak for Zephr.”
Theme – We Are Human – Day 16 ‘Flowers’ – “Hyacinth Haiku.” The challenge was to describe flowers & what meaning they have to us. I looked up the meaning of Hyacinth & discovered a story in Greek mythology of the love-triangle involving Apollo, Hyacinth & Zephr. I created a poem about their struggle & loss.
Photo 6
Alt text: an abstract drawing of different swirly shapes connecting up. Made with different metallic inks.
Theme – We Are Culture Day 12 – ‘Abstract Drawing’ – The challenge was to draw / paint wherever our mind took us on the page. I created the twists & turns & shiny bits from my mind…I drew the original shapes with my eyes closed & then filled in the shapes with metallic inks.
Photo 7
Alt text: a head shot self-portrait of a lady with long hair, looking down & smiling, wearing a jumper & a necklace.
This was the 1st challenge in #TheJanuaryChallenge – ‘The One Line Self-Portrait’ – a self-portrait in one line created with a thin brush & in metallic copper ink.
Photo 8
Alt text: an A3 pad with words & letters in different sizes, fonts, colours & shapes, cut out from birthday cards & stuck onto the page. The words tell the following story – “All hail the wonderful queen, who had the nicest birthday, ate two birthday meals, stuffed lots of cakes, wore five new outfits. She celebrated for one month, woo hoo! Then she needed a holiday!”
Theme – We Are Human – Day 13 – ‘Word Recycling’ – I collected words from my birthday cards & wrote a story about a queen who had a riotous birthday. I think this is my favourite one & 64 Million Artists were very kind & featured it in their Instagram round-up of the day.
Photo 9
Alt text: a montage of two photos – top: my garden at dusk with white fairy lights around the garden, a white metallic table & chairs, & a brick shed in the foreground, green foliage against the brick walls in the background; bottom: a written piece in blue biro on A5 lined paper, words as follows – “My garden, tranquil, talks around the firepit, fairy lights sprinkle magic, end of work gin, amongst the passionfruit and fuchsia.”
Theme – We Are Culture – Day 2 “Why I Love…” – For me, it’s “Why I Love My Garden”. My garden is the most important space that I have in my life, especially when the sun goes down.
The Musings of Spu 