It’s showtime! How did I do as Breast Cancer Now’s first ever wheelchair-using model?

Photo Credit: Breast Cancer Now.
Oversize shirt & trousers from Primark. Blue/green Swallows necklace from Tatty Devine.

Alt text: A middle-aged, white woman in a wheelchair on a fashion runway with other diverse models. They wear summer outfits. She has curly, grey, blond & brown shoulder length hair. She is wearing a necklace with blue/green swallow bird shapes, pink/brown round glasses, a blue, white & yellow oversize shirt, blue Plisse trousers & blue & silver trainers. She poses for the camera, smiling, at the end of the runway. Behind her in the distance is a white wall with ‘The Show by Breast Cancer Now’ written in black capital letters.

To recap:
In Autumn 2022 I was chosen to be Breast Cancer Now’s first ever wheelchair-using model for ‘The Show’, their event to celebrate diverse models who are living with or beyond Breast Cancer.

What happened?

Did I f**k it up? Yes, during the first show in the afternoon!

Did the sequins survive the runway? They all stayed intact & never got caught up in my wheelchair.

Did my sister Louise blag her way into the evening show? Of course she did!

How much did I cry? Not really that much. (Usually I get very emotional at everything).

And how good was the backstage cottage pie? OMG! We got fed this before the evening show started & it was magnificent!

I left May’s blog at the point of going onto the runway. On the Floor Manager’s command of “Go, go, go!” I shot out from behind the curtain but then I remembered that Kam had told me to go slow as she was following me. I’m not sure if I did go slow because I heard afterwards that everyone went much faster than expected & the first show was over in a record time. That’s nerves for you!

I was blinded by lights & faces. All around me people were one big, happy, smiling, crying (happy tears) & cheering blur. This might sound cheesy but it was so uplifting & heartwarming. I had to really fight to keep the tears back. I was so overwhelmed but in a really lovely way. I felt so much love! I was looking for my friends & family, but it wasn’t until I slowed down for the pose & the end of the runway, thenI turned the corner, that I saw Caroline & Catherine. I hope I said hello! And then as I was coming to the end of the runway, I could hear Model Buddy Fay Field screaming my name & I knew Stephane (my boyfriend) was seated at the end, so I gave them both a massive grin.

After what seemed like a one second whizz around the floor, I met Hana, my dresser & Stephane, & we took the lift to my dressing room. I sped around fast. I got a loo break in, which impressed Hana as she said she’d never seen anyone do that so fast. Then Hana & Stephane started helping me into the long sequined dress & trench coat. The lists that Stephane had stuck to the curtain which detailed which accessories went with which outfits, came in very handy.
I was really, really nervous that time was running away from us. Both Hana & Stephane reassured me not to panic & that we had plenty of time, but I was listening to the music for my cues. As I said in May’s blog, I was so right to remember the music! I was gently urging both Hana & Stephane to get a move on, but they were very laid back. Then as we were putting the trench coat on & making sure that it wasn’t caught in my wheels or my shoes, I heard Joan Jet & The Blackhearts ‘I Love Rock & Roll’ from the floor above. “Wait, I said, if that’s Joan Jet, that means that they’ve reached the third scene already & it’s nearly time for the final party scene.” A few minutes passed. Hana & Stephane were still reassuring me. Suddenly from the dressing room, I heard Ellie, one of the Events Team, screaming “quick, get in the lift now!” Apparently the models had gone around twice more, waiting for me to come up to the second floor to join the runway! OMG, Hana, Stephane & I had never moved so fast in our lives! Poor Hana was still doing my head-dress in the lift. I shot out of it and straight onto the runway again.

I was absolutely mortified. From my perspective, the last thing I wanted to do was to make a mistake. As the first wheelchair user in ‘The Show’, I wanted to show that it’s absolutely doable to have disabled people in fashion shows. I know I shouldn’t put any pressure on myself & I fully recognise that this is internalised ableism, but there you go. I felt gutted.

Now I was confused & disorientated on the runway. Coming out late meant that I wasn’t in the same place now in the line-up. But being in this new place meant that I suddenly saw the rest of my friends & my sister in one big group. I laughed & I waved because they were all cheering & I was so relieved to see them.

Photo credit: Breast Cancer Now.
Dress & Trench Coat from Jayley Collection.
Jellyfish earrings from Tatty Devine. The rest of accessories are the model’s own.

Alt Text: A fashion runway. A middle-aged, white female wheelchair user with curly brown, blonde & grey shoulder-length hair, wears a full-length rainbow sequined party dress & trench coat with a pink faux fur collar, a headband with a silver heart, pink dangly earrings shaped like jellyfish, round pink/brown glasses & black court shoes. She is moving along the catwalk, waving, smiling & looking surprised to see the people she recognises.

We were at the point when all the models had to line up & wait for everyone to join the runway. My thoughts turned once more to the mistake. I think you can see in some of the photos that I’m looking flustered & anxious. But Chris came to my rescue. I was standing next to her & suddenly she turned around to face me with her arms outstretched. We hugged. I felt so much better & very touched that Chris had realised how anxious I was. And then the mistake didn’t matter anymore.

Photo Credit: Breast Cancer Now.

Alt Text: Two white women in sequined dresses hug on a fashion runway. One is a wheelchair user. They are both smiling. The woman who is standing is wearing a full-length blue sequined dress & blue platform shoes. She has curly, white hair. The wheelchair user is dressed as before.

As for the mistake, I found out later that I wasn’t the only one who missed my cue. Phil & Jim were also changing on the floor below – the three of us had our dressing rooms there for privacy. In my feedback, I suggested for next time that they have a video link on the floor below so everyone can see the pace of ‘The Show.’ Incidentally, Jim & Phil had four changes to do so all power to them for changing so fast between all of the scenes. I only had two changes & it was exhausting!

The first show was over very quickly. I apologised to everyone I could for making a mistake but the crew reassured me that the audience wouldn’t have noticed, which is true. Hana, Stephane & I had a quick debrief in which we all agreed that we didn’t really have a lot of time for changing after all! And then we laughed about it because in the grand scheme of things, the mistake really didn’t matter. Hana then went for her debrief with the crew. I was so flustered that instead of getting changed first, I went to see my family & friends in my designer outfit. I was still going on about the mistake I’d made but they all comforted me & said that they’d had a great time. They found Dahlia’s speech very moving & they loved all the models. I daren’t not tuck into the Afternoon Tea provided for fear of spilling anything down the dress! Hana then returned to remind me that I had to change into my own outfit before I carried on partying with my family.
In my own clothes once again, I started to relax. I had some very special guests & I was very grateful that they came. All my guests have helped me so much in many ways, not just over the past three years of Breast Cancer hell, but some have helped me over decades. Here’s just one of the lovely group photos that we took.

Photo credit: unknown.

Alt Text: A group of diverse people wearing great outfits, all gather for a group photo at the side of the runway. We’re all smiling.

And here’s a very special one of me & my sister Louise. I’m not sure what I’ve said to make her laugh so much, probably something highly inappropriate knowing our relationship, but I think this is one of the best photos of us.

Photo Credit: Unknown.

Alt Text: Two white women are sitting against a white wall. One is kneeling & one is sitting in a wheelchair. The woman who is kneeling is bent over double, laughing. She has long, straight, blond hair & she is wearing a short, leopard-print dress with puffed short sleeves & black tights. She leans on one wheel of the chair. The wheelchair user is whispering something in the other woman’s ear, grinning & with one arm around her. She wears the same glasses & trainers as before, but this time she is wearing a light blue maxi dress with small white & pink flowers, a large white necklace of flowers, large silver hooped earrings, white tights with little black skulls on them & two silver rings, one of which has a blue stone.

After crying happy tears, talking, reminiscing about the old days, photo-taking & laughing, it was the end of the Afternoon Tea party. Louise (my sister) said she was going off to hide in the toilet so she could get into the next show! Everyone started laughing. I guess blagging runs in the family! One of my friends jokingly said he was leaving in case she got him into trouble! Not wanting to be banned from future Breast Cancer Now activities, lol, I took her to see one of the event organisers. We both explained that we hadn’t seen our brother, Liam, in ages, & he was coming alone to the evening show. Thankfully Louise was allowed to stay for the evening show (thank you crew!)

I relaxed with Hana & Stephane between shows. We also took the time to replan the changeover. We agreed to drop the loo break if we could & to reducing the amount of accessories. Thankfully this worked because we did it so fast the second time around, that Hana & I had about a 10-minute wait backstage to go on. We were very proud of ourselves!

The changeovers are mad. It’s exactly like you see in any fashion show footage – clothes, arms, legs, bags & hats flying everywhere! Before the afternoon show, we laid everything neatly out. By the end of the afternoon show, clothes, underwear, shoes & accessories were scattered all over the bed & over the floor, completely jumbled up. At one point, I had Stephany taking my tights off one leg whilst Hana was doing the other! I needed both of them to put the floor length dress over my head whilst I was sitting in my wheelchair. But we did get a good system going in the end because if Stephane wasn’t needed for outfit duties, he took the position of handing me the accessories.

In between shows I also got a chance to spend time with the models. With 22 of us, I hadn’t spoken to everyone & it was really nice just chilling out with them. We were all tired, but we were all absolutely loving our runway experience. And we were absolutely slaying it like pros!

Now about that magnificent cottage pie…I usually don’t do so well in coping with what I call ‘mass catering’ situations, but everything about this pie was beautiful. Just the right amount of meat (there was a veggie option), & a divine mash potato topping. MMMMMMMMM!

After dinner, it was time to get a hair & make-up ‘touch up.’ Our Model Buddy Fay had said that we’d all feel more confident the second time around. This was so true. This time on the runway, followed our choreographer, Deborah’s, guidance, & I did more of looking up ahead of me & smiling. This definitely makes you look better in the photos. When I look back at the photos, I can see that I look more confident in the photos from the evening show.

The evening show was wild. Traditionally, most of the designers, suppliers & celebrities come to the evening one. They were certainly up for a party! They were all so enthusiastic which really spurred all the models on. To start proceedings, Dahlia did her speech once more. I heard a flicker of emotion in her voice; it’s so brave of her to share her experience with an audience once, let alone twice.

The tears pricked my eyes. I breathed in deeply. I really was here. I’d always wanted to try modeling. It is kind of weird that a horrible medical event should offer me the opportunity of a lifetime. As a cancer patient, you can’t just flick a switch & move on because you’re changed forever. But what you might be able to do is move forward. And I’m fairly resilient. If I set my mind to it, I can do anything. I also scrub up mighty fine, which I’m grateful for. It’s a miracle at my age & with the trauma lines that life has left on my body.

It was about this time that I learnt an important style tip backstage. Our stylist Rebekah was lightly spraying all of the dresses & skirts on the models to avoid creases, so Dahlia’s speech was punctuated backstage by quiet hisses here & there from the spray pump. It all added to the surrealness!

And then it was “Go, go, go!” again! This time, I slowed my runway pace right down which enabled me to smile at everyone as I came along. I soon saw my brother Liam with Louise & he was cheering, smiling & filming. (They were both crying happy tears at different points). I’ve never seen Liam & Louise look so happy.

There was a change in ‘The Show’s’ presenter – Sarah Cawood. This was a big deal for me because I grew up with the tv show ‘The Word’ & other such cutting edge cultural programmes. Back in the place that I rehearsed in the final scene, I was flanked by Mary Elisabeth & Jim. We all lined up as the other models came onto the runway. Sarah Cawood was crying her eyes out in front of me, Jim & Mary Elisabeth, bless her. I was so overwhelmed & again, I fought back the tears (I had to think of my false lashes!) I saw later on social media that she’d put up a little film that she’d made of the three of us & she’d captioned it with pink hearts & the words “Stronger Than Cancer.” That really melted my heart. I don’t really think think that anyone is stronger than that b****** cancer but I really appreciated the sentiment.

Just like the afternoon show, our names were read out & we came out one by one at the end. This time I got a standing ovation, which Liam filmed. It was one of those ‘wow’ moments. I got a massive rush of adrenalin. I felt very, very alive & so ready to face the world again. As I came off the runway, Baroness Delythn Morgan, CEO of Breast Cancer Now, handed me a bunch of flowers that were larger than my head (we all got flowers). All of the crew were lined up just as we all came off. They were clapping & cheering. I joined the others backstage. Hana gave me a massive hug. What a sweet, kind lady she was. She said that she’d cried too & she showed me a little film that she’d made. As models we hugged each other too. We all wanted to do it again!

I had yet another outfit that I’d especially put together for the evening reception, so I did my last change downstairs, & then I went back upstairs to party with Louise, Liam & Stephane. At the lift, I bumped into designer Zandra Rhodes & her husband, which I was thrilled about. She had leant outfits to ‘The Show.’ She was a very kind, friendly lady & said that she loved my Jayley Collection outfit. She said she’d enjoyed herself very much.

Once reunited with my family, I could properly relax this time around! I drank a couple of glasses of prosecco – I rarely drink alcohol now so the prosecco went straight to my head! Me, Stephane & Louise caught up properly with Liam for the first time in months. Here I am with Liam & Louise, with prosecco.

Photo Credit: Stephane Cony.

Alt Text: Two white women with a young, white male, sitting at a party, smiling & holding glasses of prosecco.

There were a lot of photos being taken & Chris led the charge to the dance floor. We partied the night away at Illuminate, Science Museum, with its windows looking out from the West into Central London. London lights are mesmerising.
I realised that I was sitting near to Diane Moran BEM, who is a patron of Breast Cancer Now, (some of you will know her as ‘The Green Goddess’ fitness instructor from BBC 1’s Breakfast Time programme). She was the first profile person that I was aware of as a child that had breast cancer. I introduced myself to her & her friend, & we talked for ages about how breast cancer treatment has advanced over the years. We also said how grateful we all were to still be here. I’m so glad that I took time out to speak with them both. It’s comforting to know that people from my mum’s generation, who were diagnosed decades ago, are still enjoying life.

Photo Credit: Stephane Cony.

Alt Text: Three older white women looking very glamorous, holding glasses of wine or prosecco, sit together in a party venue, smiling for the camera.

And then the party closed.

There were more surprises for the models when we got back to the floor below. We got lovely goody bags (so did the audience) & each of us received a lovely dressing gown. It was so unexpected. We said our final goodbyes & thank you’s, & hugged each other once again. I wandered into the night, feeling happier & richer for making so many new & kind friends.

Now & again, images from ‘The Show’ flicker back into my mind. Jim in his suit made of silver sequins. Phil dressed in a Matrix-type costume & doing all the Matrix-like poses at the end of the runway, so funny. Mary Elisabeth gliding down the runway in her silver dress with her pink hair in little curls. The ladies in the first scene, ‘At The Beach’, with their straw bags & massively over-sized sunglasses. I just laugh to myself.

This is difficult to write. When I think of ‘The Show’, I think of Mary Huckle the most, gliding down the runway in her red chiffon dress. Our kind, beautiful, generous friend Mary passed six weeks after ‘The Show.’ She was a fierce advocate for people with metastatic (secondary) breast cancer. She leaves a lasting legacy & she’ll never be forgotten.

Photo Credit: Breast Cancer Now.

Alt Text: A fashion runway lined with models on one side, clapping, & audience members on the other, also clapping & giving a standing ovation. Most people are looking at one model who is walking down the runway. She is a beautiful middle-aged lady with live skin, & a black & grey straight bob hairstyle. She has a butterfly tattoo on the inside of one of her forearms. She is wearing a red, floor-length, halter neck chiffon dress that is split at one side. One of her legs is showing as she walks gracefully down the catwalk, gently holding each side of her dress. She wears red trainers. She is smiling to herself.

In April, I took part in Breast Cancer Now’s ‘The Show’ – it was a first for me on a fashion runway & a first for ‘The Show’ because they’ve never had a wheelchair-using model before. However, there’s so much to write about that I’m splitting my story over the May & June blogs.

In April, I took part in Breast Cancer Now’s ‘The Show’ – it was a first for me on a fashion runway & a first for ‘The Show’ because they’ve never had a wheelchair-using model before. However, there’s so much to write about that I’m splitting my story over the May & June blogs.

Photo credit: Breast Cancer Now – I’m at the end of the runway, Illuminate, Science Museum, London. I’m wearing Jayley Collection & a mixture of Tatty Devine accessories, & my own.

Alt Text: A fashion runway. A middle-aged female wheelchair user with brown/blond, shoulder-length hair, wears a full-length rainbow sequined party dress & trench coat with a pink faux fur collar, a headband with a silver heart, pink dangly earrings shaped like jellyfish, round pink/brown glasses & black court shoes. She has her hand on her heart & she is smiling for the camera. Other diverse models in very glamorous party clothes are following her on the runway. On a white back wall, the words “The Show by Breast Cancer Now” are printed in black capitals.

November 2022’s blog was all about being selected for ‘The Show’ & the photo shoot. This month’s blog is all about what happened pre-show. June’s blog will be about ‘The Show’ itself because I’ve got so much to say!

‘Showtime’ came around much quicker than anticipated, which basically meant that it was too late for me to back out, lol! I’m glad that I pushed myself out of my comfort zone because I had the time of my life & I made some lovely friends.
Before I tell you about my experience, I want to pay tribute to all the other volunteer models. I don’t usually use the word ‘brave’ because of its somewhat patronising context when it comes to describing disabled people, but my new friends are brave. They’re also beautiful, welcoming, funny & celebrate life to the max. All of them are living with or beyond Breast Cancer. They’re determined people. They spread love & joy. They accepted me for who I am. They immediately made me feel comfortable & part of their gang. That doesn’t always happen to me.

And then there’s ‘The Show’ crew – Rebekah Roy, our stylist, who absolutely ‘got’ me, & then dared me to push my style a little further. Well actually I went a lot further as she got me into a full-length rainbow sequined dress & a trench coat with a pink faux fur collar by Jayley Collection! She’d also picked up from my notes that I love Tatty Devine jewellery, so I got to wear a statement necklace & statement earrings from their brand. We didn’t have to do that many alterations to the clothes, except for a lovely pair of Plisse blue trousers that we cut to fit my non-conventional leg lengths. The trousers were part of the first outfit from Primark which I really loved wearing as it matched my newly-made, silver & blue orthotic trainers (yep, orthotics on the catwalk, baby!)

About a week before ‘The Show’, I went to Breast Cancer Now’s offices in the City (London) to see my outfits for the first time. When Rebekah wheeled in the rail, my eyes immediately went to a long sequined dress & matching floor-length coat. “Wow!” I exclaimed. Rebekah said she was pleased that I liked it, because she had it in mind that I would wear it!

When I first met Rebekah, I fired all sorts at her – clothes that I wouldn’t wear, fabrics that I didn’t like, that I chose clothes for their shape rather than their sizes, etc. I brought some of my own clothes & accessories to show her. I wrote copious notes about brands & accessories alongside my access notes. Rebekah took all that in, & some! It’s like she had started to live inside my head. She could see the clothes that I liked & that I would wear a bit of glitter or sequins. However, she realised that I wasn’t going as far as I could. What Rebekah did was take my style & take it up a notch, not only to push me out of my comfort zone, but to also make me look a million, trillion dollars. It didn’t matter if it was High Street or Designer fashion, she made it for me & my body.

Photo credit: Stephane Cony – Rebekah Roy & I at the final dress fitting, Breast Cancer Now’s offices, City of London.

Alt Text: A lady with red/brown curly hair & a long fringe, wearing a black dress with gold studs & gold sleeves, black tights & black patent shoes kneels next to a wheelchair user, smiling. The wheelchair user is the same lady from the first photo & she’s wearing the same outfit. She’s also smiling. They have their arms around each other. In the background is a camping bed & a tv screen. They’re in a small office space.

Deborah Britz, our choreographer, had thankfully worked with a wheelchair user before. I think she was pleased that I didn’t run anyone over or crash into anyone! I loved the practices that we did together & all the advice about keeping your head up & looking straight forward whilst always smiling. She said at the end of ‘The Show’ that I’d been really easy to work with (I hope she doesn’t mind me saying that), so that’s a ‘first’! I made sure that I told my family who all think I’m a complete Diva!

Each show always has a ‘Model Buddy’, someone who has been a volunteer model for ‘The Show’ before. She’s there to support us through the process & to give us encouragement. Our Model Buddy Fay was wonderful. Every time I got to the end of the runway, I could hear Fay shouting & cheering for me. You can hear her in all the film footage that my family & friends made, it’s so funny! She was so enthusiastic about every single one of us. Thank you Fay for being amazing.

Ellie Barnes, Catherine Gunn & Maggie Dent are Breast Cancer Now’s Special Events Team. They did everything they could to meet my access requirements. We went on a journey together, such as learning about the height of camping beds (I get dressed in bed so they managed to source one backstage for me), & the size of the turning circles of my wheelchair on the runway. They also built me a private dressing room, away from the hectic communal dressing room next to the stage, but near the accessible toilet. They took me to see the venue, Illuminate (Science Museum, London), to test out the access (which was perfect). It was important for everyone that I practiced my timings of getting off the runway, taking the lift down to my dressing room & coming back up again to the runway. I did this in 1.5 minutes, people!!!! But I wasn’t so fast on show day – more about that in June’s blog, lol!

Hana was my dresser & she was amazing for two reasons – 1. she’d never been a dresser before (she volunteered along with her friend) & 2. she’d never supported a disabled person before. She took it all in her stride & she was patient & caring. We were a perfect match because she’s a music student so we had loads in common to talk about. Stephane also helped dress me & the three of us blitzed through garments, tights & accessories with lightning speed! Hana also became dress-maker when we realised that myPrimark trousers were still too long so she measured me up, got a pair of scissors & bingo, the ends were lopped off my trousers!

Photo credit: Stephane Cony – Hana & I at the end of our first show, posing underneath the pink neon Breast Cancer Now sign, Illuminate, Science Museum, London.

Alt Text: A young lady with short black hair, dressed in a black top & trousers with white trainers, kneels next to the same wheelchair user in the first photo. The wheelchair user is in the sequined outfit. They have their arms around each other, smiling. We’re in a white space that has turned pink & purple because of the lights. Above us is a pink neon sign that says ‘Breast Cancer Now.’

Thank you also to Ariane Poole for doing my make-up so beautifully & for the make-up tips. It was so nice meeting you.

Thank you to all the stylists, make-up artists, volunteers, film-makers, photographers, designers, brands & products who all donated their time, their garments & their products that all made us feel amazing.

And finally my boyfriend Stephane. There’s NO WAY I could have done this without him. He helped me at all of the fittings, he filmed lots, he photographed lots, he chatted away to everyone & was generally helpful to all. He was cheering his heart out &, in the end, he cried tears of joy. That was very moving for me. My sister Louise & my brother Liam said that they were just about managing to hold back the tears until they saw Steph, & then they lost it too! Steph got on well with all of the models & the crew, & became a part of the gang too, which was really nice for the both of us.

Photo credit: One of my friends or family – Steph & I dancing in front of the Breast Cancer Now ‘The Show’ sign at the top of the runway.

Alt Text: A man with a bald head & glasses, wearing pale blue jeans, a blue & white top & trainers with a tropical pattern design, stands with his legs apart, knees bent, with his arms & hands stretched out. He is laughing. Next to him is a lady in a wheelchair with curly brown/grey, shoulder-length hair, wearing a long, pale blue dress with printed white flowers on it, silver & blue trainers, & white tights with black skulls printed on them. She stretches one leg out in front of her & her arms & hands up in the air. She is also laughing.

Something important that Steph did was to talk at length to Baroness Delyth Morgan, who is the Chief Executive of Breast Cancer Now, about all the varied experiences that I’ve had accessing Breast Cancer care & services. Delyth then introduced herself to me & we talked at length about what could improve a disabled person’s experience when being treated for breast cancer, & how Breast Cancer Now could reach out to more diverse people. Thank you Delyth for taking the time to listen to me & for giving me the opportunity to take part in ‘The Show.’

The Pre-Show:

After a lovely meal in South Kensington the night before with the other models (during which I knew I was in good company because everyone got tired by 9pm & wanted to go home, it’s those bloody cancer drugs), I pre-arranged with the crew to arrive later on show day. I felt that it was important to keep my morning routine & all that comes with it (especially remembering to take my medication). I had to be mindful of my energy levels. The models’ call was 8.30am & I got there at 11am. When I arrived, I had to race straight upstairs to rehearse with the other models. They were in their first outfits – ‘A Day at the Seaside’, whereas I was in a black t-shirt & trousers – such glamour, lol! A little while later, I went downstairs to explore my private dressing room; it was such a sweet little boudoir with a camping bed, a rail hung with my two outfits & a little divider with white curtains. A box of Tatty Devine accessories were on a small table. I was on the same floor as the hair & make-up stations. I’ve honestly never seen so much make-up on one table & so many stylists & make-up artists standing in line, ready for their models. ‘The Show’s’ two male models, Jim & Phil, also had a little private section next to mine, which was really nice.

Being ultra-organised as ever, but also knowing my terrible memory, I’d made a list of my two runway outfits & what I was wearing for both the Afternoon Tea & the evening’s After Party. Stephane stuck them to the black curtain that divided the dressing rooms. I also made a sign saying “Suzanne’s Boudoir” in case anyone came looking for me. Steph tacked this to the white curtained divide.

Photo Credit: Model’s own – My colour-coded outfit list stuck to the wall in my dressing room.

Alt Text: Two white A4 pages stuck side by side, on a black curtain, with a list of outfits, accessories & little doodles on them, drawn with felt pens. Page 1 – a doodle of a red parasol stuck in a strip of yellow sand, with a strip of blue sea above it. The text says – Blue Seaside Outfit – Silver jewellery (no bracelet), small silver studs & large silver hoop earrings, silver rings, esp. Blue stone ring, black rimmed glasses, blue & silver trainers, skulls white tights, whiter underwear, flesh-coloured crop top (as bra), Rebekah’s TD blue birds necklace. The next list has a doodle of a disco ball in silver & gold. The text says – Sequinned & Fur Outfit – Silver & black heart headdress, Rebekah’s TD jellyfish earrings, silver spiky bracelet, small gold stud – LOVE – black bralette, black tights, blue/navy underwear, gold ‘fly’ ring, pink/brown round glasses, black court shoes. Page 2 – a doodle of a tea in a blue cup & saucer next to a slice of pink cake with yellow buttercream. The text says – Afternoon Tea Outfit – white V & A necklace, all silver jewellery, white (skull) tights or plain white tights, flesh vest top, blue & silver trainers, blue maxi-dress, white bralette. Then a doodle in orange, yellow & light pink colour of an art deco mirror. The text says – Evening Reception – Gold & pink batwing top, black long sleeve top, gold/black jersey trousers with leaf, black tights, black court shoes, gold rainfall necklace, leopard skin bracelet, all gold jewellery, L.G. gold hoops, black bralette, black underwear.

Photo credit: Hana – Hana, Suzanne & Stephane at the entrance to ‘Suzanne’s Boudoir.’

Alt Text: A selfie pose of two women & a man, standing at an entrance to a dressing area. The white curtained divider has a sign stuck to the top of it which says “Suzanne’s Boudoir” in pink capitals & has doodles of a pair of eyes with blue eyeshadow & black eyeliner & long eyelashes, a pink heart & a pair of ruby red lips.

We separated out different piles of underwear, clothes, shoes, & my accessories from ‘The Show’s’ accessories, around the dressing room. We made sure that I had enough space to get to the bed. As the second part of the rehearsal was about to begin, Hana & Steph dressed me in my party outfit. Now was the moment of truth! The dress was a skin-tight fit so they both had to pull quite hard to get it over my lumps & bumps, lol, as well as being careful that the sequins didn’t come off. That went ok. Whilst the dress length didn’t fall beyond the wheels of my chair, the trench coat did. Rebekah had devised a way of pulling the coat away from the wheels by gathering & fastening the middle pieces of it into a rose shape in my mid drift. She did this with a hairband & it was so effective. At the fitting, I made sure I had a few goes up and down the office space to make sure that the hairband would hold for the duration of the runway. I was afraid that the coat would get caught in my wheels, scattering sequins everywhere & probably catapulting me across the floor. The hairband worked! Hana, Steph & I were quite nervous of recreating this on the day but after a few false starts & double checks, we got there. I also managed to put one of my Nan’s round, white-bead & gold brooches at the centre of the hairband which really set the coat off nicely. Once my court shoes & all the other accessories were on. I carefully went up in the lift to join the other models.

Everyone looked out of this world. They were stunning in their glamour, sequins, heels, flowing dresses, beautiful suits, everything. Suddenly all our garments made sense. Little glimpses of styles & colours appeared within each others’ outfits. Once we were together, the theme of the piece became evident, & with this completed, we became one unit. The air was filled with shouts of delight – “Oh my god, you at you!” “You look fabulous!”, etc.

We started rehearsing the last segment of ‘The Show.’ I was only in the first & the last scenes (there were four scenes /four outfit changes) because we were all worried, me included, about not being able to change me quickly enough. I need time to change & if I rush, I fall & then it’s chaos. That’s me. Rinse & repeat! I’d watched the other two scenes because I wanted to see what the next set of outfits would be & knowing that I probably wouldn’t remember the sequences by timings, I listened carefully to the changes in music to understand the cues – trust me, this becomes very important later & I’ll explain more in June’s blog!

The last part of ‘The Show’ was about glamour & partying, so I was second out after Mary Elisabeth, & then Jim followed me. Mary looked like an ethereal angel. She was wearing a beautiful full length white/silver dress. Jim was wearing a suit made entirely of silver sequins. Then the music came on & it was a piano version of Coldplay’s ‘Yellow & Blue.’ I looked at Mary Elisabeth & she was crying, then the helpers & crew cried, then I cried &then I think all the models probably cried.

Our model buddy Fay had said that there would be a moment when we would all realise the enormity of what we were doing, how far we’d come, how good we suddenly felt, how proud of ourselves we were, that this was a truly magical moment, & standing between Jim & Mary Elisabeth was that moment for me. We had to stand for quite a while so that all the models could line up next to one another. Thank god I wasn’t wearing make-up at that point. I made a mental note to try & not look anyone in the eye. I always cry, always, at everything.

But as quick as that moment arrived, ‘Freak Out’ by Chic came on & we all had to start dancing & moving on to the next sequence. Fashion time is fast time!

I didn’t really have much time to kill before the start of the Afternoon Show. I went to one of the little styling stations first – they had proper Hollywood style mirrors with lights around the outside, & a large collection of GHD styling equipment & products laid out before me. I found that impressive!

The stylist was great & turned my brown/blond/grey messy hair into something that Farah Fawcett might be proud of. I was very happy with that. We chatted away (not about our holidays though, lol!) & it made me feel less nervous.

Photo credit: Stephane Cony – With the stylist, making light of my wild hair, on the floor below the runway, at Illuminate, Science Museum, London.

Alt Text: A female wheelchair user dressed in black, sits at a table with lots of hair styling products & equipment, & a mirror with white light bulbs, on it. Her hair is being styled by a woman with long, blond curly hair, wearing a blue medical mask & black clothes. She is holding tongs & curling the wheelchair user’s hair.

Then it was make-up time. There was this huge trestle table covered in Estee Lauder products & Mac eyelashes. Incredible. I spoke to one of the runners to say that I was a little nervous, mentioning my allergies to lots of products, but then mumbling nervously that Estee Lauder had sent me lots of testers (thank you!) to try out & that “I’d probably be ok…” The young runner was lovely. She replied, “Don’t worry, my mum is leading the stylists, I’ll get her to do you.” And guess who her mum was – Ariane Poole! I recognised her from her days at GMTV & This Morning. I was thrilled to be made up by her & we had a really interesting chat about how cancer treatment ruins your skin pigment & how your tried & tested foundation might now turn orange on you. (Thanks what happened to me & it really annoyed me. Cancer sucks the fun out of everything!) She was so kind & friendly, I loved being pampered & I loved my false eyelashes too.

Photo credit: Breast Cancer Now – the trestle table with make-up & products as far as the eye can see!

Alt Text: A trestle table covered with make-up split into sections – an area for foundations, an area for lipsticks, brushes, etc. The trestle table is in a large room & a few people are milling around in the background.

Suddenly we were being called upstairs. I could hear the excited babble of the audience, invited family & friends, & supporters. My mouth went dry. I heard the afternoon presenter Kate Lawler preparing the audience for the start. Hana was with me backstage. Steph had gone to take his seat with Fay at the end of the runway.

‘The Show’ opened with Dahlia talking openly & honestly about being a young woman diagnosed with Breast Cancer. Her speech was very moving; she didn’t shy away from the difficulties, but there was hope & light in her words. She talked about being a researcher on breast cancer treatments & then her shock at being diagnosed with it herself. Imagine how triggering that is.
There was lots of emotion backstage. I looked at all of us. I was surrounded by people who were diverse in every way possible, & we had been thrown into the toughest & rawest of situations. Yet we were here in the Science Museum, willing to share our experiences in the hope of helping others. The audience listened in silence, lost in their own thoughts & emotions.

I thought of my mum looking down on me & I could hear her laughing voice saying “what are you up to now!”. I thought of my sister Louise, & how happy I was that she was in the audience. I thought about the hell that we’d all been through, sometimes together, & sometimes alone. That mum hadn’t come out the other side, but because of the advances in treatment, Louise & I had. I thought about my dear friend in the audience, Caroline & her recent heartbreak. I thought about my other friends & colleagues in the audience & watching online. I thought about how grateful I was to have all these people wrapping their collective arms around me. I felt a calmness descend.

I thought about Kammie telling me not to wheel out too fast, as she was following me & couldn’t keep up. I remembered Georgia saying that she was glad she was wearing sunglasses because she knew she’d cry like a baby.

My last thought was “Don’t f**knit up Suz!” And then the curtain was pulled back & I was being told to “Go, go, go!”

Find out in June’s blog if I indeed did f**k it up. If my sequins survived the runway. If my sister blagged it into the evening show. Just how much did I cry? And how good was the backstage cottage pie?!

This month’s blog was going to be about having a PET scan as a wheelchair user, but as always with me, the experience turned into a whole lot of something else…

Photo taken one day after the PET scan when I was bed-bound.

Alt Text: A black & white selfie pose of a white, middle-aged woman, with a bob-style hair cut, wearing a nose ring & a leopard-print pyjama top, resting her head on a pillow case with a dot style print.  She looks exhausted.

Before getting into telling my story, I want to acknowledge that it might make uncomfortable reading.  I struggled internally as to whether I should make my experience public, because essentially it’s another spotlight on how inadequate our NHS has become.  You know I’ll always support the NHS & defend it forever.  I acknowledge that it’s been ruined by years & years of underfunding & political “interference.”   I know that a lot of healthcare workers have left because they’re exhausted, underpaid, undervalued & working within systems that are often not fit for purpose.  But when the systems impact on staff so badly that they lose sight of the need to to treat a patient with compassion, dignity & respect, that the staff treat anyone that needs a bit more support as an inconvenience,  then we’re all in trouble.  My patient experience has been rapidly getting worse since the end of 2021 & it’s not the NHS that I recognise & love.  And so that’s why I’ve blogged about my recent hospital scan.  It was really, really humiliating & I was frightened.

I’d planned for this blog to be a practical guide for anyone disabled, predominately  if you’re a wheelchair user, on how the PET scan experience might be, so I’ll start with giving my tips first.

To give some context, a PET scan is a ‘3-d’ view of your tissues, muscles, organs & joints.  One of its purposes is to see if cancer treatment has worked, or if cancer has spread elsewhere in the body.  My oncologist agreed to me having a PET scan because I was reporting systems of what could be potentially secondary breast cancer (painful joints, muscles & bone – especially to the thigh bone), vomiting & constant nausea, & a general feeling of being unwell over the last 4 – 5 months.  

A PET scan is nuclear medicine; it’s done with an injection of a radioactive tracer.  You wait an hour, & then you have the scan.  It’s a table with a tunnel & not dissimilar to MRI or CT scan equipment.  

You’ll need to think about how you transfer on & off the table which often isn’t adjustable (check if they have a hoist – I can stand & transfer so I didn’t find out if the department that I was in, had one), & you need to be able to lay flat on your back for up to 45 minutes.  However, often the scan takes between 15 & 20 minutes.  If you’re claustrophobic, you can request a tunnel with more room.  

It’s a fasting procedure.  You usually fast for 6 hours before the scan, but there is specific guidance if you’re diabetic.  You can drink plain water right up to the procedure (but this is where the letter that I received gave conflicting information, more about that later).  Blood will be taken to determine your glucose levels.  When you book, they’ll ask a standard list of questions such as whether you’re diabetic, when was your last period, if you’re menopausal or if you have gone through the menopause, if you have any metalwork in you, if you’re on chemo, if you’re having radiotherapy, if there is a chance that you could be pregnant, if you have any allergies (such as latex, plasters etc) – pretty standard stuff.  It’s here that I would advise detailing your access requirements, phobias etc.  However, this was the point where an important intervention could have been made by the booking team & if they had noted down some key details about me, it could have vastly changed my experience.  When you get to the scan, they’ll go through the same questions & more, such as how many operations you’ve had & when, what medication you’re on, etc – all standard stuff.  Again, I’d advise reiterating any access requirements, allergies & phobias at this point.

I think something important to think about is if you need assistance and / or reassurance from one other person to be with you during the procedures before the scan.  You’ll need to go to the loo at some point & you’ll definitely be asked to do that just before they scan you.  You might need help with drinking water too or removing clothes and/or shoewear that might have zips / metal (best thing to do is not wear them in the first place, along with any jewelry).  You might need help getting around when you’re pushing yourself with a cannula in your hand or lower arm, they can get caught in the spokes of your wheelchair.  I also felt cold when I was waiting for my scan, so I’d bear that in mind.  Once they give the nuclear injection, they propose to leave you alone in a room with the door closed because you’re radioactive, & you remain radioactive for 6 – 8 hours after you’ve left the hospital.  You’re not meant to be around people who are pregnant or of child-bearing age, & young children for all of those hours.  This wasn’t included in the information that I received & it caused me issues – again, more about this later.  I’m not sure what they do if you need assistance in the scan, but the hospital staff helped me & my patient advocate (provided by the hospital) stood behind the screen with the staff.

If you take more time to do every day tasks, or you’re getting hospital transport, then they’ll potentially ask you to rebook for the morning instead.  My scan was booked as urgent so my appointment was late afternoon.  This would have been fine if the staff had:

• Followed the information that was on my medical notes
• Had listened to me in the pre-scan procedures
• Made me aware of things like the amount of time the radioactive tracer stays in the system, or if I could continue to drink water right up until the scan 

Next time I need a PET scan, I’ve been asked to book in the morning & to prepare the team  that they might have to give me an injection guided by ultrasound.

If you have any issues with veins, such as them being deep, fragile, hard to find, etc, then please try & get this across to the booking team.  Because you’re fasting, it might be a difficult experience for you so my advice is to drink plenty of water.  If you have a needle phobia, then make sure that’s not dismissed by the booking team – one of the team said to me “oh, you don’t like needles” to which I replied, “it’s a phobia, it’s not about not liking needles, it’s much more than that.”  Staff often dismiss any kind of issues with needles by saying stuff like “nobody likes them much do they?” “Just look away.”  I told the booking team that a patient advocate from the hospital would help to keep me calm during any procedure involving needles.  This wasn’t recorded.

And so to my experience.  It’s true to say that it was never going to be straightforward because I’m a disabled person undergoing cancer treatment which is making my impairment worse & I’ve always had very deep & fragile veins.  I’m needle-phobic – & I don’t know why because it’s a phobia that I’ve had since I was a child.  I need help to do every day tasks with the assistance of one other person.  But it still could have gone smoothly, which it didn’t.

My experience was vastly transformed by my patient advocate (I think I’ve mentioned her in a previous blog) who literally saved the day – her intervention meant that I did eventually get my PET scan.

On the day of the scan, I stopped eating at the required time & I drank plain water for up to two hours before the scan – I thought the letter had said that.  The booking team rang to ask me if I could come slightly earlier because of a prior cancellation.  I agreed to this.  When I arrived, I informed the booking team that I’d be joined by a patient advocate – the booking staff looked a bit non-plussed as to what an advocate was, & why they needed to be there.

I was called in very quickly, then shut in a room all on my own with one other staff member.  She asked me a set standard questions which were a bit more detailed than the booking team’s ones & when I let her know of my phobia, allergies & access requirements, I was met with a blank look.  It was then that she informed me that she’d be doing the injection now, & that I couldn’t move from the room or go onto my work event afterwards because I was a radioactive risk to others.  I can’t deny that wasn’t bitterly disappointing because I’d been supporting a colleague to set up & deliver that event since October 2022, but I accepted this.  I did ask why the potential harms weren’t made clear on the form though.  She didn’t reply.  I spent some time texting work to give my apologies about not being there in person at the event.  My colleagues are so supportive, thank god for them.

In the following days after the scan, I saw detailed information online about PET scans & then I chastised myself for not being more diligent in preparation.  But before the scan, I’d stop searching for information on social media because ‘Dr. Google’ wasn’t being my friend – it was fuelling my ‘Scanxiety.’  

I explained to the female staff member present that, because of my phobia, she couldn’t do the injection without my advocate being present.  And I said that I couldn’t be alone because of my access requirements.  She muttered something about me perhaps being allowed to have the door left open & my advocate sitting in the corridor 1 metre away from me, but she’d have to get special permission.  Then she let me return to the waiting room so I could catch up with my partner & wait for my advocate.  

However, the hospital staff didn’t bleep my advocate, so I opted to go into the procedure room alone, with the hope that she would turn up at some point (she did, & the first thing that she asked the staff was why hadn’t anyone bleeped her).

Once in the procedure room, a nice chap came along & was trying his best, but unfortunately because the letter appeared to state that you could drink water but you had to stop this two hours before, & because I have Spina Bifida, Raynaurds & I’m affected by the side effects of treatments, he couldn’t find any veins.  Despite my protestations that he would be advised to seek assistance from his colleagues and / or wait until my advocate arrived, he tried more times than he should have done to find veins.  And he wasn’t really listening to what I was saying – like “This is difficult for me”, “The veins in my upper arm tend to be better,” “Can you hide the tray of needles please?” “Can you use the thinnest needle you have?”, “Can you ask one of your colleagues who is trained to get blood from problematic people to do it please?”. etc.  

Of course, because my fears come from an irrational place, I started to get agitated, & then I started to panic.  Bizarrely, but I guess he might have been following medical training, he started shouting in my face at the top of his voice “Breathe, breathe, pull your mask down, breathe, breathe!”  That freaked me out.  Then he started to flick my veins which was the only sharp pain that I had.  Pushed to my limit, I shouted “stop doing that!”

Then he left me in the room with a tray of needles spread out in front of me & closed the door behind him.  I heard muffled voices.  A short while later another female staff member appeared.  She said she’d try a butterfly instead of a cannula.  Then the first guy arrived back & they started talking over & about me, but never to me, so I chose to save my energy for focusing on coping with my phobia.  And I wasn’t being listened to anyway so what was the point in me speaking?  I completely shut down.  Her tries were just as unsuccessful.  I think at this point the ‘patient-blaming’ started.  They said I hadn’t understood the letter properly because I could have drunk water right up until the scan (they didn’t offer me any water at this point & refused to review the letter when I offered to show it to them)  & that I hadn’t informed the booking team of my needs (I had, several times over & my needs are written into my medical notes!) 

A different guy appeared & the patient-blaming got worse.  I was very distressed by this point so the staff stopped again, because all their faffing about meant that I’d lost my scan slot.  I refused to wait alone in the room with the door shut as I was fairly traumatised, & they allowed my boyfriend into the room to sit with me.  Once alone with him, I became really angry & he was upset at what state I’d been left in.  I’m pretty sure they heard my anger spill out.  

But as if by magic, my patient advocate arrived, having come to look for me after she wasn’t bleeped. She wasn’t pleased with what she saw.  She has been with me ever since my lumpectomy just under 3 years ago, & she’d never seen me in this state.  Then the three staff rushed back into the room & acted quite differently with her around (surprise, surprise!)  My advocate explained to them all the ways in which they should be treating me; that the veins in my upper arm were better, that the chemo unit would place my left hand into luke warm water for 10 or so minutes to open the veins.  In the same breath, she asked why a tray of needles had been left in front of a needle-phobic patient, & if dehydration was an issue, why hadn’t they fetched me any water?   My advocate wasn’t saying anything different to what I had explained, but they took notice of her because she was their colleague.  I was so grateful that she had taken charge of the situation.

After establishing that nothing useful was going to come out of my left arm, & knowing that they couldn’t try my right arm as this is the side of the lumpectomy & lymph node renewal, & they couldn’t try my left foot because its affected by my spina bifida, they then suggested my right foot.  I broke my self-imposed silence to say that I’d never been through this before but that I was willing to give my foot a try (I was also reminded of that lyric in ‘Lust For Life’ that goes “Of course, I’ve had it in the ear before…”). The last guy to enter the room was tasked with finding veins & he started to place surgical gloves filled with luke warm water on my foot to warm up any veins.  I was also given three cups of water & this did open up my veins; unfortunately not enough to get a needle in.  He also remembered to do a glucose finger-tip swab, a procedure that had been forgotten in all the chaos.

I was perturbed because the veins in my foot always look big & lie at the surface, but still no vein came.  Hence the title ‘Holy Fook / Foot!’

All the time, the guy was commenting that I wasn’t flinching or crying out in pain when he was trying to jab the needles in.  I patiently explained that my phobia wasn’t about pain.  Then he started to mutter that I’d have to rebook, & it had to be in the morning next time, etc.  It elicited this response from me “Well, you’re going to have to find a vein because I’m not leaving without a PET scan.  My oncologist is calling Monday to give me the results.”  At this point he mentioned that he had a colleague down the corridor who could find veins guided by ultrasound.  Resisting the urge to scream out “why didn’t you refer me to him before & why did you try so many times over when you knew this was available!”, I realised that my advocate was already out of her seat & off to find him.  And when she did, he agreed to see me.

The PET scan team had jabbed me over 10 times in my left arm & in my right foot to find veins.

I followed her down the corridor & entered a room that wouldn’t look out of space at NASA.  I exclaimed “Wow!” at the biggest screen I’d ever seen, suspended from the ceiling & hovering over the scan table. The ultrasound guy was very calm & quietly confident.  To my relief, he treated me with respect & listened to me from the start.  He explained everything carefully, most importantly explaining that he would only try once to find a vein, & if it didn’t work, I’d have to rebook. I accepted this.  Then he began an ultrasound procedure on my left arm; carefully & methodically.  And he found a vein!  He inserted a line with the third staff member assisting.  Done.  Simply, kindly, gently, painless.  I was so grateful to him, & my advocate & I thanked him profusely.

I went back into the little room & the radioactive tracer was administered – this is completely painless.  My advocate was allowed to sit 1 metre away from me, on a chair placed in the corridor, with the door open (& this is a reasonable adjustment that anyone who needs assistance can ask for).  We chatted away & I was able to relax for an hour before the tracer was ready.  There was just one more thing to do before the scan – going to the loo – which I did & then I was taken into the PET scan.  

My advocate wasn’t taking no for an answer in terms of not being present for the scan, so she stood behind the screen with the staff member.  The PET scan was completed with the guy who had first tried to get blood from me.  He had stayed behind to help which I thanked him for.  But as I was gently swinging my legs over onto the table, he insisted on helping (& probably wanting me to hurry up) & he grabbed hold of both my legs, then lifted them high to swing them onto the table.  I cried out in pain, it was an involuntary cry.  I explained to him that my left hip was partially dislocated & that it’s best if I manage the transfer alone.  It turned out that he’d put me in the wrong place anyway!  I dutifully got off the table to reposition myself, & then I showed him how I swing my legs up onto the table – this time he didn’t help, thankfully.  He gave me verbal instructions so I could complete the rest of the positioning, & then we were off!  The tunnel moved up & down my little body, taking its measurements.  I was laying on my back with a block under my knees.  If you move in the scan, they have to start again, so I focused on my breathing to try & ensure that I didn’t spasm.  That’s really hard to learn to do.  The last 5 minutes of the scan were agony & I wasn’t sure if I was going to spasm right at the end.  But I made it through the scan without any major mishaps!

At the end, the staff member was very apologetic about what had happened, & I over apologised too.  My advocate said to me earlier that if I did ever want to scream, shout & cry, that was totally fine as people do “all sorts” & that the staff wouldn’t take it personally.  But in serious situations like this, I always say “sorry” & “thank you” as much as I can in an attempt to get people onside & then there might be more chance that they’ll meet my needs the next time around.  Sadly, remaining calm didn’t work in this particular situation, & there’s no doubt that if my advocate hadn’t have been present, my experience would have ended much more traumatically. 

I need to thank my advocate once again for her total dedication, for making my needs clear to the PET scan team.  And to ‘play it forward’, whilst I was otherwise occupied, my advocate went off to talk through the needs of a couple of other disabled patients under her care.

If you can get an advocate who knows their ways around procedures using reasonable adjustments, it’s just the best thing ever.

Sadly, another reason for speaking out is that I wasn’t the only person who rejoined their relative in the waiting room, looking like they’d been through a traumatic experience.  Another elderly gentleman was there with his wife, & they both looked shell-shocked when they’d finished with the PET team.  I felt really bad for the old man as he looked as if he was currently receiving a lot of treatment.  Perhaps a culture / attitude change is needed towards the patients from the PET scan team? 

I’ll end by reiterating that the staff there were trying to do their best under difficult circumstances, & I really empathise with this.  But they’d lost their sense of remembering that there was a human being on the receiving end of their treatment.  Ironically, if they had listened to me, they might well have had an easier time treating me & not have had to stay late to complete my scan.  Somehow I’ll find a way of getting 3-4 more (simple) requirements added onto my notes so I can be more confident of the experience – if I have it again in the future.

I spent the following day in bed, unable to move because they attempted to get blood from the only foot that works; the one I use for my standing transfers, balancing etc.  I was battered & bruised.  I think the crushing fatigue came from me trying to process that traumatic experience.  The following days I did very little.  Saturday was the first the day where I felt better,

In the end, my PET scan was completely clear of cancer, which I’m so very relieved about.

And our work event was a fantastic success for the charity that I founded.

Photo image taken from the Saturday after the scan.

Alt Text: A black & white selfie pose of a white middle-aged woman with her hair cut into a bob style.  She is wearing makeup, a large, silver hoop earrings, a small, silver nose ring, & a cardigan.  She is smiling.  She is in her lounge.

Today, 10th March 2023, marks 3 years since I was diagnosed with Breast Cancer. So how the devil am I? #TriggerWarning – this blog ain’t for the faint-hearted because it talks frankly about living with the long-term side effects of cancer treatment on my body.

Photo credit: Anjan Saha.

Alt Text: A middle-aged white woman with brown / blond flecked with grey, cut into a bob. She is wearing round pink/brown glasses, a thick, black padded outdoor coat with zips & lined with black faux fur, & a black faux fur scarf. She has a small, diamante nose piercing & a small, diamonte ear cartilage piercing. She is looking away from the camera, smiling. She is in a cafe.

The 10th March rolls around once more. The familiar scanxiety sets in – here we go again, another ‘shite’ February & March. Except today is different because I’m relaxing at the end of a very long work week, chilling on top of my bed, typing away, & not as sore as I expected to be. My Zoladex injection got rearranged for Monday lunchtime because my GP thinks he’s coming down with the lurgy.

I know already that my mammogram is clear (omg YES!!!) I had it on the 8th February. I had expected to wait two weeks for the results but there is a great system in place in West London called ‘Patients Know Best’ where you get stuff like appointments, results, letters, etc. digitally. The outcomes letter was uploaded by the 10h February. I read it about 5 times over, closing the app and re-downloading the letter, & then worrying all night after reading it that perhaps a mistake had been made. All part of the mind-bending, ‘gift that keeps on giving’ cancer experience!

My annual mammogram was physically very difficult this time around. I had a very supportive radiographer but the issue is that my legs can hardly carry me now, I can’t bend into the mammogram plates so easily & my arms can’t really stretch around the machine as they did before. In reality, I can only stand on one leg to transfer anyway, but even this is becoming difficult. So with my buckling legs, painful spine & shaking arms, my radiographer & I muddled through, got the scan done quickly (the radiographer always had to run quickly around to the booth to take the image & return to release me before my leg collapses underneath me anyway) & we got some clear images (a miracle!) But I’m scared about how long I can continue having mammograms that aren’t accessible to me as a wheelchair user.

COME ON NHS, all you need to do is make the machines go lower so people can sit down to have a mammogram and machines that can scan you whilst you’re propped up in bed.

I believe that I was more nervous about my scans due to the scare that I had back in July 2022.  At the ultrasound, the mass that I was feeling turned out to be a small ball of fluid near my lumpectomy scar.  However in February, my brain was tricking me into thinking “what if they made a mistake?”  I wish it didn’t do that.  I tried all the usual CBT (Cognitive Behavioural Therapy) tricks but nope, there I was down the road of distrust.  When that happens, I have to take a step back from life & wait for the anxiety to pass.

So here I am. NED (No Evidence of Disease) for the 3rd year & of course I’m feeling so relieved & happy; excited for the future & full of creative ideas. I’ve certainly got a busy time coming up with both my jobs, with a new climate change programme to lead on which I can’t wait to start. I’m thankful of having the opportunity to learn new skills at the latter end of my career. Both jobs also have milestone events to celebrate in the next month or so – & you all know how much I love a good party!

My campaign to get disabled people recognised within breast cancer prevention and breast cancer treatment has slowly been gathering pace. I’m nervous & excited about taking part in Breast Cancer Now’s The Show on 20th April as a volunteer model. I’ve been to see the space (Illuminate at the Science Museum) to check out the access – it’s perfect for me & the room has a great view across London from the end of the fashion runway. Soon I’ll be testing hair & make-up products, & trying on clothes with the stylist! And I’ve met so many lovely volunteers taking part (shout out to The Show volunteers & crew!)

I’ve even booked a 5-day UK-break in the Lake District for the end of April!

However there are lots of unexpected things happening which I wish I’d been told about & not had to try & work out for myself. Having said this, how many oncologists know how cancer treatment might affect my impairment, & how many Spina Bifida (yes, I’ve had to ‘out myself’ now with my condition because otherwise what I’m saying wouldn’t make sense) consultants understand all the different ways of cancer treatment?

So what am I going through?  I’ll try to be brief, lol:

• Sudden & drastic loss of mobility (I’m finding it hard to do one-leg standing transfers, driving with one leg in an automatic car for distances, etc)
• Numbness
• Neuropathy (I can’t bend my fingers first thing in the morning which makes getting out of bed interesting, I’m endlessly dropping stuff that I’ve just picked up) 
• Relentless pain (on top of already having chronic pain for years)
• Other deeply unpleasant side effects (even I’m not going to go there, you’ll have to google those!)

This could be down to:

• The side effects of cancer treatment (Letrozole can cause awful, awful muscle & joint pain)
• The medically-induced menopause that I’m in (I already have osteoporosis & nearly all the other joyous things that come with the menopause like flushing, brain fog, etc.)
• Other more worrying signs of recurrence (I get freaked out if I start to write them, do forgive me)
• “Tethering” (many people with my impairment get this as they age as tissues get caught in the spinal cord, which means it can’t move freely within the spinal canal)

It’s so frustrating that breast cancer patients, or any cancer patient, can’t just get a full MRI scan & CT scan annually.  Instead, I have to go through this frustrating time of getting just the part that’s hurting the most, x-rayed at any one time (occasionally they’ll let you have two parts x-rayed) because that’s all the NHS will allow my GP to order.  So this time around when I said that the pain was in my thigh (& long bone pain like a thigh one, is of the ‘flagged warnings’ of potential metastasis i.e. spread), I could only get my hip & knee x-rayed.  Thankfully they were clear of any disease.  But my thigh still hurts.

I notice how much mobility I’ve lost every day, but it’s especially prevalent when I’m going yoga & in the gym.  I never knew how much oestrogen is needed to keep your joints flexible! 

Some of you may question how I can put myself through the agony of gym & yoga.  Simple.  To reduce cancer recurrence & to keep my old, creaky bones moving for as long as I can.  And yoga really has improved my breathing.  I give thanks to god that at least THAT hasn’t worsened!

I also had to battle with another GP at my practice who suggested that I should get my mental health checked out. This really annoyed me because without meaning to, the GP was being dismissive. I spoke to my friends at our Expressive Art group (big hello to them all) & they were very supportive. It seems that it’s all too common these days for that to be deemed an acceptable response.

GP’s & other Healthcare Professionals – when a patient comes to you describing unexplained pain & you see them more than once, please don’t refer to their mental health BECAUSE THE PAIN IS REAL & HURTING THEIR BONES & THEIR ORGANS, IT’S NOT IMAGINED IN OUR HEADS. I’m sure that there’s a lot of us out there that recognise being treated this way & feel that we’re being ignored.

Of course, that’s not to say that I don’t have mental health issues after going through Breast Cancer surgery & radiotherapy during a pandemic, & getting COVID-19 twice. But I can promise you that the pain is in my leg, not in my head! And I know where to seek help & what to do if I feel that my mental health taking a tumble!

I’ve said before that I don’t look too far into the future & worry about what my mobility will be like in years to come.  It’s pointless speculation that will freeze my brain to the point that I won’t be able to mentally function.  I’m best just putting one wheel in front of the other & seeing what the next day brings.  “Tomorrow is another day!” is what a former colleague of mine said & my sister agrees that she lives her life by this simple phrase too.

Don’t get me started on what I can’t eat or drink anymore – in fact, that can have its own blog!

In the spirit of trying to move my life forward, I’m in the midst of sorting all this out.  I’m lucky to have some very wise & learned people in my life, & one of them suggested this route – getting my GP to bring my oncologist & my disability consultant together on a conference call so they could at least understand what symptoms are being exacerbated & why, how / if they can treat them, & at best, find some sort of compromised resolution to reduce the impact on my quality of life.  The GP has agreed to this & an email is on its way to them.  I hope it also prompts them to do a full body MRI scan as I’d totally qualify for one with my symptoms!  The Spina Bifida unit is quite helpful in getting a full body MRI scan & x-rays of multiple areas of the body all done in two appointments.

Now I’m not blaming any of the people that treat me for not knowing any of the answers. It just reinforces my point that not many (enough?) people with Spina Bifida are being diagnosed with breast cancer & their symptoms are repeatedly put down to “oh that’s just (aging) with your impairment / this is being caused by your impairment. Sadly I know too many disabled people who have gone to their GP with the most obvious symptoms of cancer, even saying themselves that they suspected cancer, only to be dismissed. That didn’t end well for some of them.

And cancer patients can be often ‘gaslighted’ – “Oh, if only they’d gone sooner to get themselves checked”, or “it’s their lifestyle”, etc.

Some of you might now be annoyed with me; feeling that I’m being self-indulgent, that I’m selfish, that I’m ungrateful because I’m complaining – after all I’m alive. I get that. But living with a cancer diagnosis & with an existing impairment comes with a price. I’m doing what I set out to achieve with this blog – to be open & transparent, & to tell it like it is.

I’ve always aimed to live a care-free & happy life – everyone deserves that. And being disabled, having a long-term health condition, &/or living with a cancer diagnosis makes no difference to wanting a life well-lived.

I can guarantee that there is someone out there who is in exactly the same, or very similar situation as me, & thinking “who is out there that I can call upon? Who is out there that ‘gets’ what I’m going through?”

I’m searching for those people to connect with. Our voices need to be heard. In the meantime, I’m going to carry on living, well.

Alt text: A diverse group of people, including wheelchair users & people with other impairments, in a bright, light studio practising yoga.

For this month’s blog, I’ve invited my good friend Miranda McCarthy, Founder of Adaptive Yoga Live – https://adaptiveyogalive.com/

I’ve been practising Adaptive Yoga now for about 5-6 years & I absolutely love it! Not only has it helped keep me fit, it’s also great for my anxiety & breathing. In fact, my breathing has improved so much that my team at Brompton & Harefield Hospitals Trust, London, UK, have noticed clear improvements in my lung function tests & sleep studies.

But the best thing about Adaptive Yoga is all the new friends I’ve made & & love that they’ve given me through some very tough years.

Over to Miranda…

“You know it’s inevitable,” I said to him, standing at the bar. “What’s inevitable?” he replied. “Us,” I said with a cheeky smile as I seductively took a sip of my vodka Redbull. He was my younger self’s idea of a dreamboat – tall, blonde floppy hair, Cambridge-educated and with a body of a Greek god. “Why don’t you come by the gym one day then” he prompted. “Maybe I will.”

I saw Gym Bunny (a nickname my twin sisters gave him) only a week later at the local fitness centre – a place I dreaded going into for fear of social judgement and general awkwardness. I have been Disabled since the age of two, have undergone multiple operations, and live with chronic pain from over 30+ arthritic joints. Using gym equipment was never recommended as it can be high-impact. However, I was told gentle weight training could help improve the strength and stability of my joints, so I thought I might as well give it a go.

Being Disabled means there are several moments, on any given day, where you just have to suck it up and face your fears and challenges head-on. This one was BIG. Dream man – nightmare scenario. I headed over to the weights and started looking at them, bewildered. What am I doing here? I asked myself. I glanced in the mirror next to me and saw that Gym Bunny was strutting his way over to me. “Hey you, looking to do some weight training?” “Um yeah, the thing is…”
This is where it started to go downhill. At this time in my life, my disability was almost completely hidden. You couldn’t tell by looking at me that I had titanium hips and knees, that my ankle joints were fused, or that my range of motion was only a few degrees in my upper limbs. That is until I try to pick up a ten-pound dumbell and do a bicep curl.

It was like something out of a cartoon, we consecutively went down in size until I was left holding the smallest dumbbell on the rack, and that’s when it happened. Gym Bunny burst out laughing and screamed across the gym, “Hey, we’ve got a weakling here. Can someone get the purple weights?!” A bunch of other gym bunnies joined in, repeating the question, “The purple weights?” “Who needs the purple weights?” He handed them to me, and said “Don’t wear yourself out!” and walked away.

Needless to say, it put me off from going to the gym and any other mainstream fitness facility for years. The ableism in the attitude and practices of some fitness professionals, who see those living with a disability or chronic illness as people who haven’t done enough to live a ‘normal healthy’ life, is a frustrating reality. Fitness industry standards and expectations still do not include the abilities and needs of people with disabilities. That’s why finding adaptive yoga was such a game-changer for me.

I remember the first day I walked into the tiny studio at the Westway Sports Centre in London. A few chairs were set up, and the teacher was sitting in front of the class. People with various types of disabilities and impairments joined us. People in wheelchairs, on walking sticks, with carers, it dawned on me that this was the first time I had socialised with other Disabled people. I became acutely aware that I was in a safe space, maybe for the first time, where I felt totally free to be Disabled.

Did you know that virtually any yoga pose can be made accessible? Well, neither did I until I saw my fellow yogis all doing different variations of the same pose. Some were seated, some were on the mat, and some were being assisted. Our teacher was able to give verbal cues and adjustments tailored specifically to each student’s needs so that everyone could participate regardless of their level of ability.

Adaptive yoga is designed to meet people with disabilities where they are at in terms of physical fitness. The poses and exercises can be modified or adapted to accommodate any type of disability. I particularly like seeing the ingenuity of my fellow yogis in their use of props such as chairs, blankets, and blocks for support during the practice. When properly supported, the struggle to hold a pose is eliminated, and one can more easily detect the presence and movement of the breath (this serves to unify the physical, mental, and spiritual body – the essence of yoga).

What surprised me the most was that yoga is actually a form of meditation. Even if you are just being aware of the rise and fall of your chest as you breathe, you are practising yoga. This sets it apart from any other form of exercise because it’s not a physical workout; it’s a mind-body practice that produces a change in calm and relaxation on a neurobiological level through mindfulness.

My regular yoga practice has not only increased my physical strength and flexibility, but it has provided a number of psychological benefits, such as reduced stress, improved mood and self-esteem, increased relaxation and mindfulness, increased resilience to my life’s challenges, improved body image and acceptance of my physical limitations.

Additionally, joining an adaptive yoga class provided a supportive and inclusive environment where I could learn from and connect with other Disabled yogis who have similar challenges and experiences. I had found my tribe, my community, and not a gym bunny in sight!
The only problem is, at the moment, 99% of images you see representing yoga are of hypermobile white women contorting themselves into impossible shapes. Different body types and abilities are not represented in mainstream yoga studios, publications, or advertising. Yoga’s global popularity, as well as its proven benefits in terms of physical, mental, and social development, makes it a perfect tool for promoting the inclusion and well-being of people with disabilities.

It’s why I launched my nonprofit organisation adaptiveyogalive.com to provide free-of-charge classes so that everyBODY can have access to yoga regardless of their financial status, shape, age, weight, race, gender, or level of ability!

My yogic lifestyle has supported me on my journey to a new, healthier way of living, and I’ve never felt more connected to myself and to those around me. I am so happy I finally found a physical activity that I could enjoy and engage in, on my terms, without feeling limited by my limitations. I feel nourished, nurtured, and empowered.

From Suzanne: you’d be made so welcome if you want to join in or if you’re a yoga teacher wanting to learn the Adaptive Yoga practice – https://adaptiveyogalive.com/

#Yoga #AdaptiveYoga #YogaForEveryone #YogaClass #YogaForStress #OnlineYoga #FreeYoga #YogaForEverybody #MentalWellness #AdaptiveFitness #FreeYogaClasses #InclusiveYoga #InclusiveSport #SeatedYoga #ChairYoga #DisabledYoga #AdaptiveYogaLive

Alt text: a rolled up, pink yoga matt, a pink foam yoga block & a pink yoga strap pokes out of an open blue sports holdall, laying on a grey carpeted floor.

Happy New Year! So, let’s talk exercise – because we’re all supposed to be in the gym in January, right?!

This month features my first guest blogger, my former colleague Natalie South-Law. Ta da! I’m really proud to announce this! I feel like my blog has ‘come of age’, so to speak.

I briefly covered the challenges of understanding the importance of keeping physically fit, but not knowing how to do that when you’re also disabled in my Breast Cancer Now IG Story Takeover in October 2021. I spoke about what I can do which is basically swimming, yoga & light gym exercises.

But as I’m someone who had to stop PE at 14 because I was running the 100 metres & getting slower each year, I thought it would be an idea to hand over to Natalie who’s passionate about supporting disabled people to exercise & making exercise accessible. Here’s what she says:

‘If you had told me as a child that I would be writing a blog about how integral to my life as a disabled person exercising and sport is, I’d have thought you were mad!

That’s because back in school. PE and fitness was never really something I enjoyed, was on my radar or actually was even included in. I went to a mainstream school through my whole education.

In primary school, I would be taken away from the class when it was time for the PE lesson, and have to do my physio instead with the support worker.

As a disabled adult, I wasn’t getting any regular physio or medical intervention, but I was still riding, that one consistent movement activity, just now at a non-disabled school. I went to watch the Para Dressage at the 2012 Paralympics in Greenwich Park.

This was a huge turning point for me. People like me, doing sport!! Now I’m not saying all disabled people want to be in the paralympics, as that is simply not true. What I am saying is that it was so nice to see that representation.

Alongside all of that, there was also discovering the gym, and how enjoyable, and fundamental, strength and conditioning training is to me as a disabled adult. I spent a number of years trying to find an accessible gym and a Personal Trainer who had an understanding of disability, and this was quite an arduous process. Luckily, I found a PT who was willing to work with me, despite not having any previous experience of working with disabled people, and we learnt together. I worked with him for just over 6 years, and learnt so much. I probably would advocate more towards finding someone with experience of working with disabled people, but I’m definitely glad I took the risk, as I have seen such an improvement in my impairment with regular movement. Now I take part in an adaptive CrossFit class with Alt Movement, which has been great, as the coaches adapt the movements to suit the individuals, and it’s so good to surround myself with other disabled people. If you are in Essex, definitely recommend checking them out!

I have developed so much, not only physically, but mentally too through my fitness journey over the years. I soon realised that it’s a process and not an overnight fix, and this has been really important in building up the habit.

All my workouts complement the sports that I take part in (wheelchair basketball and shooting), but they also help with managing my impairment, and, as boring as it can be, I make sure to include stretching in every session.

I think one of the most important things for me with discovering sport and movement has been the support networks I have surrounded myself with, including my family, friends, workplace and sporting colleagues, and peers with Cerebral Palsy. I also think having myself as my biggest inspiration is really important to me – as big headed as that might sound! I have developed a drive to always do better, but equally as important, to not compare myself to others. Everyone is on their own journey and will have different goals, so that is a big reason why I use myself as my own inspiration. And setting those goals with my coaches has always helped with my drive. I think it’s so important to recognise that disabled are actually able to have goals and aspirations, just as non-disabled people.

I think the biggest thing for me that has got in the way is lack of representation. As a child, I didn’t know any other disabled children, I didn’t see disabled people in the media, so I didn’t really know what I was capable of, as I didn’t see myself represented. Of course, sport isn’t for everyone, and I think that I was lucky in that I enjoy it.
Also, ableism was a huge factor too. Not being able to do something “because I’m disabled” was a big part of my childhood. In 2017 I completed a half tough mudder, which is a good example of this mindset shift, as I definitely wasn’t sure if it was for me. BUT not because I was disabled, but because I wasn’t sure about the mud!

If you are reading this and you are a disabled person, I hope it has encouraged you to get out there and see what you are capable of. It’s important for me to end this by saying movement looks different for everyone, and that’s okay! It’s more important to be safe, and work out what is a suitable goal for you. If, like me, you were excluded from PE as a child, any form of movement would be enough to make our younger selves proud!’

Natalie South-Law

Natalie South-Law is on instagram as @itsthatgirlwithcp

its.wheelie.nat on linktr.ee

@ItsThatGirlWithCP on twitter

Alt Movement can be found on https://www.altmovement.co.uk/

On the first proper wintry weekend in mid-November, I found myself in an east London studio, being photographed with a lovely bunch of kind & funny people.  We’re all volunteering to be models in a unique Fashion Show which will take place in Spring 2023.

Alt Text: A selfie pose of a White woman with long, straightened, brown/blond hair with a hint of pink.  She is wearing round, pink/brown glasses, large silver hoop earrings, a silver necklace & a black t-shirt.  Behind her is a large, leafy, green plant, photographic equipment & a Black woman sitting with her back to the camera.  She has her hair in a bun & she wears a black t-shirt with the words “The Show” printed across the back in white capital letters.

Many of you who have known me a long time have seen that I’ve always strived to get the most out of life & to embrace new experiences.  This has become more intense since I was diagnosed with Breast Cancer. 

So, my next adventure is going to be… becoming a model!  Yep!  Next April I’ll be on the catwalk at the Science Museum, South Kensington, London, UK, taking part in Breast Cancer Now’s ‘The Show’, a fundraising fashion show that they host every year with volunteer models who all share one thing in common – our lived experienced of Breast Cancer.

I volunteered to be part of the show to raise awareness that disabled people get Breast Cancer too.  When I was accepted by the show, the Events Team told me that this is the first time that they’ve had a wheelchair-using model who has an impairment not caused by Breast Cancer.      

I’m so nervous about modelling & the ‘runway’, but I’m determined to come out of my comfort zone.  There’s all the physical stuff to work out with the Events Team, such as turning space for a wheelchair-using model, the timing of the clothes changes to when you go out again on the catwalk, creating a private, accessible changing area backstage, etc.  But there’s also a lot of emotional baggage to deal with.  That’s not just down to being disabled.  What I share with a lot of the other models is that my body changed in an instant.  All of us want to get our confidence back & feel beautiful again.

As with all application forms, the questions were standard – perfectly understandable as to why, but I’m not really standard, lol!  Even before I gave my access & COVID-19 safety requirements, there was so much more detail to give about my clothes & shoes preferences.  For example, when it came to describing my size, I found that very difficult.  I don’t really have a ‘size’, as such.  I tend to choose clothes by their style instead, something which I’ve worked out over many years.  I don’t fit into any conventional shapes, certainly nothing figure-hugging with my spine of three bends at 120+ degree!  I’ve got some skin allergies (which are a bit worse now because of the side effects of treatment), so there’s all sorts of textures, textiles & make-up brands that make me come out in hives.  I can’t wear zips, hooks or shoe-shop footwear either. 

After I’d got this all down on paper, I could then move onto what designs & particular clothes shops that I liked.  That’s helpful for the stylist as many of the clothes are donated by brands.  But I asked if I could wear some of my own clothes, as I thought it might be easier for the stylist.  Plus, I wear some wild stuff sometimes, especially when raving or ‘festivaling’ (remember the two shiny capes that I bought in lockdown?!!!)  I nearly always need to have trousers, skirts & dresses shortened.  I was thinking that it might be hard for the stylist to find ‘off the peg’ outfits for me that wouldn’t need extensive alteration.  For years my footwear has been made by the hospital (thankfully it’s a world away from the ‘clod-hoppers’ that I had to wear as a kid!)

I’m really, really fussy about what I wear & I’m vain.  Looking ‘top dollar’ has always been important to me.  I made quite wild & non-conventional fashion choices from a young age.  This was encouraged by my mum who spent a lot of time & interest in dressing both me & my younger sister.  She used to make her own clothes & my grandmother made her own clothes too, including sequinned gowns because she was a dancer.

And why is it important to me that I look good?  Because I’ve always been stared at.  Instead of being embarrassed, I’ve used clothes, jewellery & make-up to accentuate what people might be staring at.  So I wear wacky patterned trousers & leggings, statement jewellery that has slogans, such as my Brexit protest slogan necklace that says ‘European’, & lots of UV make-up & face glitter when I’m out dancing.  I’m almost 52 but there’s no chance of me toning down my style!

In preparation for the modelling experience, I also had a video call with Catherine Gunn from the Events Team.  She was very supportive, generous & kind.  We talked through everything; she put my mind at rest about many aspects of the photo shoot & the show.  I opened up about how nervous I was about taking part; how I felt uncomfortable about changing in communal places & having people dress me who I don’t know – I really didn’t want that to happen.  I’m wary of being dressed by someone that I don’t know because of the amount of attention that needs to be given to my personal care requirements.  Although I’ll have a dresser, I’m going to have my own support with me, which will calm my nerves on the day.  With my access requirements met, it means that I can just focus on the modelling part.  And I’ll have a private changing area to myself, near an accessible toilet & with a bed as I find it easier to get changed on one.  We talked about how tired I might get, so I chose the latest photo shoot session time & travelled to the session by taxi, taking the overground rail from Haggerston to get home.  For the night of the show, I explained that it was easier for me to sleep in my own bed rather than staying in a hotel – in fact, I live in the same borough as the show’s venue, so it’s easier for me to get a taxi there & back.  We discussed whether I’d have to miss the show’s meal the night before, & only do one of out of the two shows.  However, I’ve just heard that I can have annual leave from work around the time of the show, so I’ve confirmed that I’ll be attending the meal & I’ll be taking part in the afternoon & the evening shows.  I don’t want to miss out!

The day of the photo shoot was a Saturday in mid-November & it was the first cold, foggy day of the season.  I got all masked up ready & I sat in the cab with my legs shaking away!  At times when I get nervous, I feel grateful that I sit in a wheelchair to stop me from collapsing to the floor.

The ground floor of the studio, Street Studios in Haggerston, east London, UK, was wheelchair accessible, including a designated toilet.  I’ve put the details of it at the end of the blog if it’s helpful to anyone.  There were loads of people milling around but I was greeted very warmly by everybody (with a cup of tea which always helps) & my nerves started to melt away.  Everybody was so excited & it was infectious.  I had a good chat with as many people as I could, but Stephane (my boyfriend) was able to spend more time with everyone than me.  He just chatted away, it’s always so sweet to see.  There was lots of lovely food, especially biscuits made with the Breast Cancer Now and The Show logos, so nice!

One of the first people that I met was the choreographer, Deborah Britz. She was very encouraging & she’d choreographed wheelchair users before, which really helped me.  We all had a modelling lesson from her & a couple of turns at practising a mock runway, which was really fun.  She made it really inclusive too which I really appreciated.  The practise enabled me to show off what my manual wheelchair can do.  I actually love my chair; I’ve had this particular one for nearly five years – it’s super-light & speedy with a glittery purple frame which catches the light.  Although it’s nerve-wracking to pose in front of a whole lot of people that you’ve just met & you’re physically different from them in every way, gliding through the practise in that chair made the experience much easier.  I do a lot of yoga too, so that helped me to visualise sitting up straighter & breathing through each pose that I was asked to do.

The next experience to tackle was the photo-shoot.  That was a whole lot of fun, especially when the photographer, Sarah Page, brought the wind machine out – yes, A WIND MACHINE, LOL!  As usual, my glasses were on wonky because I’ve got one ear that sticks out more than the other (a source of much merriment in my family!) & I was trying not to show my bad teeth, but she managed to get a whole lot of nice shots.  She also showed me the shots as we went along to check if I was happy & comfortable, which was really kind.  We had shots in a small group as well, but my group shot was a little bit more spread out to be COVID-safe.  Everyone is the group was really supportive about that (thanks ladies 😉!)  Stephane also took some unofficial shots of us laughing & mucking around which are really funny.

Then it was onto the Videographer, Steve Torpey, to capture some movement which I found quite tricky, but still amusing.  He asked if I had a signature move & all I could think about was that I give ‘the bird’ quite a lot which obviously I didn’t do this time, lol!  I just said that I didn’t have one.  I swung about a bit in my chair & smiled inanely.  I’m honestly not sure how the video will come out, but I know Steve did his very best with my messing about!

The part that I was most nervous about was meeting the stylist, Rebekah Roy.  As agreed with Catherine, I brought a few examples of clothes & my new bespoke trainers made by the hospital to show her.  Rebekah was really supportive; she said she felt confident about planning what I was going to wear, she could see that I wasn’t afraid of bold colours & patterns – not only from the range of clothes that I’d bought, but also because my glasses were pink, & my I’d dyed my hair pink.  I was quite chuffed by that! 

And then as quickly as it began, it was all over.  Stephane & I emerged into the cold darkness but we both had a warm glow whilst taking the overground rail at Haggerston to Shepherd’s Bush which makes up most of our journey home.  I was exhausted the next day, but boy, was it worth it!

Thank you to the Breast Cancer Now team – Ellie Barnes – Senior Special Events Manager, Catherine Gunn – Senior Special Events Officer, Mark Sydserff – Senior Multimedia Manager, Sarah Page – Multimedia Producer, Steve Torpey – Multimedia Producer, Harry Frostick – Multimedia Production Assistant & Rebekah Roy – Stylist, Catherine Britz – Choreographer & all ‘The Show’ models for an awesome day.

You can find Street Studios here – https://www.streetstudios.co.uk/

You can find out more about Breast Cancer Now’s ‘The Show’ here – https://breastcancernow.org/get-involved/special-events/show-london

I’d also like to take the opportunity to wish all my blog readers Season’s Greetings.  I hope you have a restful & peaceful holiday, & thanks for all your encouragement this year.

Photo Credit: Stephane Cony.

Alt Text: A photo shoot with a white floor & white walls.  A White woman sitting in a purple wheelchair, with long, straightened, brown/blond/pink hair, wearing round, pink/brown glasses, a black t-shirt, black trousers & black boots, smiles into a camera on a tripod.  Operating the camera is a white woman with long, curly brown hair & a black jumper, crouching down.  In one corner is some photo shoot equipment.

Alt Text: A selfie pose of a White woman & man, wearing masks, sitting in the back of a London Taxi.  The woman has long, straightened, brown/blond/ pink hair & she is wearing a black puffa jacket with a faux fur hood, a black faux fur scarf & a white medical mask.  Her round, pink/brown glasses are perched on the top of her head.  The man is wearing a grey flat cap, a blue mask with white polka dots, an orange scarf & a dark mauve & red wool hooded coat.

Alt Text: A white logo that says ‘The Show By Breast Cancer Now’ in white capital letters on a black background.

One of the most debilitating aspects of cancer is the impact on your confidence & self-worth.  I can’t tell you how much I want this particular aspect to be over!

Alt Text: A selfie of a white woman with long, curly dyed pink here, wearing a blue sweatshirt with a rainbow & the words ‘I’m over it!’ printed on the front.  She is in her bedroom, sitting on her bed which is covered in a pink, grey, black & white spotted duvet.

I guess we all have periods of questioning our self-value & self-worth depending on what might be happening in our lives.  However, living with a cancer diagnosis can really negatively impact on how we see ourselves or how we think others see us. 

I think my self-doubt stems from the fact that I didn’t find my breast lump myself.  Instead, it was found in a routine mammogram.  Being disabled & having an awareness about my impairment gave me a level of confidence in understanding my body.  Cancer took that understanding & confidence away.

I already had generalised, low-level anxiety anyway (it’s very connected to living with an impairment; everyday you’re dealing with a serious of dumb-arse scenarios such as ‘will the cabbie moan about how my wheelchair folds, will the assistance staff come with the ramp to get me off the train before the door closes’ – the list is endless), but this increased to a much higher level once I’d had the cancer diagnosis.  I try to reason with myself, trying to accept that getting anxious is entirely understandable after all that I’ve been though.  But what I really don’t like about anxiety is when it affects my self-worth, sometimes to such an extent that I lose confidence in thinking that I can’t do something anymore.  Trying to counter-act those overwhelming, negative feelings is the debilitating part of it.

When I returned to work, I felt that I had a lot to prove – would I still be up to the job – & did others think that I could still do the job.  As a friend send to me recently, if you’re a lead in an organisation & you return from a long sickness absence, or you announce any kind of “transition,” the vultures start circling.  That’s 100% true in my experience. 

After an astonishingly successful result at work within the last couple of weeks, I can say with total confidence that I am very much back ‘in the room’, but it took a while to get there.  For reasons of confidentiality & privacy, I’ve left out names & supplied general details in order to describe my experiences in the blog.

In the early part of this year, the charity that I founded had to re-apply for its core funding.  It’s always really intense work & takes a few months away from running the business.  However it comes around every few years, so you accept it, roll up your sleeves & get on with it.  I’ve led the application process as directed by that particular funder a few times over & the organisation has always been successful, so I took some confidence from that.  But this time around it was particularly challenging.

The first indication that things could be altogether very different was when the funder’s guidance came out.  Not only were there pages & pages of guidance & bespoke templates to read through, but I also simply couldn’t understand what was being asked of the organisation by the funder.  I was deeply shocked.  Then shock turned into terror – had my level of comprehension been reduced to almost zero?  In an instant, it took me back to when I was put on tamoxifen before my surgery & how I had to eventually take sickness absence because I couldn’t even follow a plot on EastEnders!

My mind & stomach began to do somersaults.  The organisation was looking towards me to help them understand how we were going to apply, to decipher any jargon, to co-lead them through the process & to co-lead them to another successful result.  The more I read, the more I cross-referenced, the more my brain fog grew.

In a complete state (yes, I’d worked myself up into a frenzy), I turned to my co-lead who responded in the kindest way ever, first & foremost reassuring me that it wasn’t just me finding it impossibly hard.  She directed me towards social media where literally all the applicants were expressing the same difficulties as me.  And then some other kind & generous souls started releasing Easy-Read guidance & templates & deciphering all the jargon.  And then there were others who were willing to have a conversation about what I was finding difficult & then make what I didn’t understand, understandable.  Thank god for those generous people.

But all this help doesn’t take away from me having to de-construct all of the guidance so that I could get us into a position where we could start the application.  I set about distilling all the guidance down to its essentials.  It was only by doing this that I was able to present the different funding models to the team, making recommendations to what our appropriate model should be.  This took HOURS of work.  Eventually I went back to a tried & tested set of questions – what does our organisation do best, what do we want to achieve in the next few years, how are we going to achieve it & how much budget do we need?  Then I matched our aspirations with our what funders would want to know – what does the organisation want to do, how much is it going to cost, have they got the structure to support the activity & how does it meet our criteria?  Bam.  It sounds so simple doesn’t it! The irony was that I became so proficient in explaining the funder’s different models, one of our other funders claimed that it was the clearest explanation that anyone had ever given them! 

Once the recommendations for our funding model were agreed, the whole organisation got to work to complete the application.  I regarded the experience like creating a plan which everyone had creative input into & had ownership of, & as a result, it became our most ambitious application to date.

I adopted the position of ‘morale-boaster’ within the organisation, endlessly injecting enthusiasm & positive energy.  But all this took its toll.  Inevitably I was ill from the ongoing side effects of cancer medication & with work-stress on top of that, I had to withdraw a couple of times in order to make sure that I was recovering in time for the next step of the process.  As we came closer to announcement day, there were lots of external rumours.  I ignored them, focusing instead on knowing that our organisation was great & there was no reason to think that we wouldn’t be funded.  It was really difficult to maintain so I coped by mostly withdrawing from discussing the subject unless I absolutely had to.  Of course, on the lead up to the announcement, I happened to be waiting on x-ray results for my right knee & hips (the results were clear, phew!)  So, my mind was a jumbled-up jelly mess, but my mantra became “We’re going to get everything that we’ve asked for.”

And do you know what, WE DID!  WE DID IT! That’s what I screamed into my laptop screen when I announced it to the team.  I cried loads as well.  It was such an emotional moment.  It felt that all the mental & physical struggles that I’d had for most of the year, melted away. It felt massive. But then it was massive.

Hence the biggest rule in doubting yourself is never to doubt yourself, LOL.  And then the next rule is that some things are literally out of your control so all you can do is make the very best of them.  Quite often, returning to things that bring you comfort & pleasure, & implementing ways of working that are beneficial to you, really help dissipate some of the anxiety & most definitely increase your feelings of self-worth!  Hanging out with good friends & colleagues who are all routing for you, who are willing to help & who are there to remind you that they believe in you, were hugely motivating factors for me.

I’m going to finish this blog by congratulating my colleagues on our massive, collectively-earned success – you’re bloody fantastic!

And also, I’m going to say, ‘I still got it.’  Because I have!

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.

https://www.instagram.com/s/aGlnaGxpZ2h0OjE4MzIzNzg5OTg5MDA2OTY0?igshid=YmMyMTA2M2Y=

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 11^th 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.

You can find them on www.breastcancernow.org

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. 

She didn’t have to do that.