Gemma Seager: 'My 'bad back' was incurable blood cancer'

The pain, which started in September 2020, didn’t go away. In fact, it got worse.

By Christmas, Gemma couldn’t sit to eat dinner or use a knife or fork, by March the pain was so debilitating that showering, sitting, filling a kettle, brushing her teeth or putting on socks was agony.

In May, finally sent for an MRI scan, she was rushed into A&E with a fractured vertebrae and tests began to discover what had caused her spine to essentially collapse.

On June 10 2021, she was given the answer: multiple myeloma, a rare blood cancer which is incurable but treatable and six months later, on December 15, she was reborn.

But, in Sound of Music style, let’s start at the very beginning.

Born in Kent, Gemma grew up on the Isle of Sheppey off the north-Kent coast, surrounded by beautiful countryside and the sea.

As a child, she spent a great deal of time lost in the magic of books: “I loved to read and read as many books as I could get my hands on,” she said.

“I also loved bird-watching and learning about things: I wasn’t much of a ‘going outdoors to play’ type of kid, I liked staying at home and playing with my dolls.

“I desperately wanted to live in an Enid Blyton book full of picnics and adventures and lacrosse, which was ironic, as I really, really hated PE at school!”

Gemma did well at school and loved English and drama – she passed her 11 plus and went to a girls’ state grammar school.

“When I was growing up, I wanted to be a writer – I used to write terrible stories which probably plagiarised Enid Blyton pretty badly and involved people solving mysteries through a series of not-particularly-difficult clues,” she laughed.

“The dream was to write books and be a novelist, to make a career from writing the kind of books that I loved to read.”

After her GCSEs, Gemma began nursing training (“there was no novelist training!”) which was ‘option two’ on the career list, but swiftly proved to be a choice she regretted.

“I think I’d seen myself, in true Gemma-style, wearing a crisp apron, a cape and a little hat, a bit like you see on Call the Midwife. I did a year and realised it was more nylon and clearing up body fluids and so I went back to college.”

Gemma passed her A levels then went to Southampton University, living in Winchester to study English and Media Studies.

“It was nice: a small university, in a lovely place and it was lots of fun. Winchester is a lovely little city, just my kind of place, not too big and not too small – a bit like Norwich!”

At university, Gemma had a few part-time jobs, the usual kind of student fare, at shops, as a temp, on reception…and as a care assistant in a psychiatric unit.

“It could be a bit dramatic,” Gemma said, telling me a few hair-raising stories, “but you tend to think you’re immortal when you’re young and a patient with a knife is just another patient. I remember my biggest concern was if I’d stay awake on Sunday night shifts.”
At university, Gemma had no plans for the future – career-wise, at least.

She had met her partner – now husband – Pete when she was 17 at a friend’s party in Kent and the pair had seen each other on and off through university, but after graduation became a couple.

“We’ve been together for what feels like forever, and he knows me better than anyone, the good and the bad!” she laughs, “when you grow up with someone and they grow up with you, it’s just lovely.”

The couple looked for somewhere to live and settled on Norwich, a small university city, not too big, not too small…”it just felt perfect,” said Gemma, “everything we wanted from a city but also close to countryside and the seaside.

“The shops are great, there are fabulous restaurants, there’s a lot going on and it’s a beautiful place to be. We made the decision and we’ve never regretted it.”

Both Gemma and Pete found jobs: Gemma worked for a plumbing and gas firm on the insurance team (“I picked up quite a lot of plumbing tips!”) until 2006 when she moved to a job as a receptionist and then IT support at a commercial property company.

“It absolutely wasn’t for me,” said Gemma, “I had no other job to go to, but I just had to leave. So, I walked away and set about thinking what I could do next.”

And then the whirlwind commenced.

“It was the month before Christmas and I had a month’s salary behind me, so I thought about the saying ‘do what you love’ and I started to look at what had been a sideline – selling vintage clothes on eBay – more seriously,” said Gemma.

“I was good at selling and I was good at writing, so I started Retro Chick, a blog all about vintage-inspired fashion and my eBay shop and quickly the blog became far more interesting than the selling!

“I’ve always loved vintage and glamour and so I found it an easy thing to write lots of posts and create what became a really well-regarded fashion and lifestyle blog.”
Retro Chick appeared in the UK’s Top 20 Fashion Blogs by Cision Media for years and won the Rarely Wears Lipstick Awards in 2013, also winning plaudits from Cosmopolitan and Company magazines.

With the vintage market beginning to explode, Gemma’s blog was timely and popular: and soon, as she’d always wanted, she was making a living through writing.

“When I started, it was all badly-taken-selfies-in-mirrors and I had no idea that people would pay you to mention their stuff. The first time someone asked me to write a sponsored post, I think I did a dance!” she laughed.

“There was no five-year plan, no real idea what was next, but suddenly I was at London Fashion Week. I learned about building websites, taking photographs, creating content and it all felt very, very exciting.”

Gemma was a guest on Radio Four’s Woman’s Hour, launched Norwich Cocktail Week and was a third of The Historical Sauces along with Kerry Clark and Lucy Santos, who curated a pop-up vintage resource library for those interested in retro styling and workshops in vintage fashion, hair and make-up.

A PT who used to hate exercise but grew to love it, Gemma’s route to training other people grew from her own route to fitness.

“For most of my life I felt that exercise was all about weight loss and burning calories – the idea that it might actually be enjoyable was inconceivable,” she said.

“My mum used to write me notes to get me out of PE at school! I’d done a few Race for Lifes, a few fitness DVDs and I’d even joined – and then left – the gym a few times but really, it was only because I wanted to fit into nice dresses and be able to eat even more pizza. It wasn’t about fitness or feeling well.

“Exercise began because I wanted to be thinner, but it ended up with me just wanting to be healthier and to improve my performance as a runner and later at Roller Derby,” said Gemma.

“It was the first time I wanted to take part in exercise after years of feeling that I wasn’t ‘good’ at it or that I wasn’t the right shape. I’d gone to gymnastics as a child but even teachers and coaches didn’t ever really encourage me.

“I’d kind of accepted it would never be my ‘thing’.”

In 2012, Gemma ran her first 5k and was surprised to find herself bitten by the bug.

“In true ‘me’ style, I quickly made my hobby a job and started to write a fitness blog, Lipstick, Lettuce and Lycra, where I talked about weight, exercise and was generally very hard on myself for eating ‘too much’,” she said.

“But then something strange happened. I started to enjoy running. I started to REALLY enjoy running. I did 10ks, started to learn about nutrition in a bid to make myself run faster and I learn that exercise was about more than weight loss, it was about health and fitness.

“It’s like a switch went on in my brain and I realised that weight has nothing to do with health and that food and nutrition are about finding a balance. It was literally life-changing.

“I also think my route to fitness helped me to become a better coach because when people told me that they didn’t think they could get fit or they didn’t have motivation, I understood completely.”

After running came rolling, when Gemma won a place on the Norfolk Brawds Roller Derby team as number 79, the brilliantly-named ‘Gem Warfare’.

“I completely loved it,” said Gemma, “I hadn’t been on skates since I was about eight-years-old and the first thing I had to learn was how to fall over – I was great at that – I can fall over like a real pro!

“It’s a full-contact sport but you’re wearing a lot of padding which protects you, but it takes a long time to be confident and to be good – I think one of the proudest moments of my life was when one of our games was shown on BBC Sport!”

Weightlifting and half-marathons were included into an already packed schedule alongside Roller Derby and fitness became all about feeling strong and healthy, rather than being a certain weight, or size.

A diploma in personal nutrition followed in 2014: “As you are probably now aware, I don’t do things by halves,” Gemma laughs, “if I do something, I do it full-on. And then I turn something I love into a business opportunity.”

When husband Pete was made redundant and began his own self-employed journey, Gemma decided to add another string to her bow and became a Virtual Assistant, or VA, an online PA available to individuals or businesses.

“I didn’t want Pete to feel that he had to find another terrible, boring job in order to support what I did, so it was something that could fit in with everything else I was doing,” she said.

The pair welcomed pugs Peppa and Waldo into the family in 2017 (“they are the best medicine”) and she began her personal training business in 2019.

“I felt I had something to add,” Gemma tells me, “I think it’s daunting for some clients when their trainer is 20 and super-fit and can’t understand you when you tell them you’re struggling to fit exercise into your schedule or that wanted ‘before and after’ photos.

“That’s what I’ve absolutely loved about my job, helping people look at their bodies in different ways. A client told me her wedding dress was too tight on her arms but she was delighted because it was all muscle.

“It was seeing people realise that they could do things they never thought they could and working with the emotional as well as the physical.”

Just as life felt pretty great, March 2020 happened and with it, lockdown.

“I ordered lots of home equipment but of course it made personal training very difficult – it made me improve the way I explained things!” Gemma said.

“I had to be more imaginative – there was a lot of time spend with clients at Mousehold bandstand!”

In the autumn of 2020, Gemma injured her back. A ‘simple’ sprain, she thought, sustained as she did squats with weights at home when she slipped and twisted her back.

“Straight away I knew I’d done something really bad, but I rested and looked after myself and I thought it was getting better,” she said.

By Christmas Eve, Gemma was in so much pain that she was nauseous and could barely move: a physiotherapist gave her some exercises to try and medics suggested that her growing anxiety had produced physical symptoms.

The pain grew, but Gemma tried to remain positive and rested as much as possible.

She went to see physiotherapists, had acupuncture and massages – but by March 2021, even the simplest of everyday tasks caused immense pain.

“It was the most frightening and frustrating time of my life – I even paid for pain management courses because I’d been told that my stress was making it worse. One day, I found myself completely unable to support my legs, it was absolutely terrifying,” she said.

“I had to drag myself out of bed using my arms. I felt no-one was listening to me about how much pain I was in. I ended up crying at my GP who listened, believed the pain I was in and pushed for an urgent MRI scan.”

On May 5 2021, Gemma went for a routine scan. She was immediately log-rolled onto a medical scoop and rushed to A&E with a collapsed vertebrae and possible cauda equina, a rare and severe kind of spinal nerve compression.

“The scan showed my vertebrae had pretty much disintegrated,” she said, “I was told I’d probably need urgent spinal surgery.

“I couldn’t believe what was happening. Just nine months earlier I’d been running, working out and training clients and now I was bloated, puffy and felt ancient.

“I told myself that I was coming from a position of fitness which would help my recovery but it was hard being alone with no visitors because of Covid and not knowing what was wrong but on the other hand I was so glad that something was finally happening.”

Strong pain relief, rest, further scans and biopsies followed and on June 10 2021, Gemma was given her diagnosis: Multiple Myeloma, a rare blood cancer.

“Hearing the words was hard, but I had already been warned it could be cancer and from what I’d read, it was not a surprise. I was told I had tumours in my bones, my right shoulder and my coccyx,” she said.

“The consultant couldn’t believe I was still able to walk. I had two options: to fall apart or to try to get on with things as best I could. When you’re told that you have incurable cancer, there’s an overwhelming desire to live as much and for as long as you can.”

Very quickly, Gemma’s pain levels began to drop as she began treatment.

“Treatment is like another full-time job,” laughs Gemma, “there are endless blood tests, tablets, steroids that give you water retention, injections for you to learn to do, chemotherapy, appointments and scans to go to, it’s consuming.

“Then there are the side-effects: the steroid weight gain, the fatigue, the infections, the bloating…as I said, a full-time job!”

In September 2021, Gemma attended the Bone Marrow Clinic ahead of stem cell harvesting and chemotherapy ‘induction’ sessions to prepare her body for a stem cell transplant.

“Dealing with the treatment I need had taken time and I was apprehensive about the stem cell transplant because it meant a long stay in hospital with no visitors,” she said.

“You have to keep in mind at all times that all the treatment and the side-effects are so that you get a longer period in remission and therefore a longer life. When you have a goal like that, it’s easier to accept what happens – you’re just happy to have options.

“You have to work hard at not feeling sorry for yourself because at times it felt like my body belonged to cancer and not to me.”

At the end of November, 5.2million of Gemma’s stem cells were harvested – enough for two cell transplants – and she underwent lung function tests, chest x-rays and tests on her heart prior to going into hospital a fortnight before Christmas.

Before she left home, she shaved her head.

“I didn’t know if I would lose my hair or if it would get thin or whatever, but what I did know was that I was going to be in control. So, I shaved it off before it fell out!” laughed Gemma.

“It’s important for me to be able to control the things that I can because so much is out of my control. And at the end of the day, it’s hair – it’ll grow back!”

On December 13, Gemma was admitted to the Norfolk and Norwich University Hospital despite fears that a Covid surge would delay treatment.

High dose chemotherapy left her feeling constantly nauseous before the transplant on December 15, an effective ‘rebirth’ with a long period of recovery afterwards.

“It was tough; the fatigue was hard and I felt weak and shaky and extremely sick, which is really debilitating because it affects absolutely everything you do,” said Gemma.

“Although it was a big mental and physical challenge, I did notice that every day I felt a little bit better but it has felt like a steep mountain to climb.”

With three-month courses of anti-viral and antibiotic drugs to take to avoid potentially life-threatening infections, Gemma also had to have her Covid vaccines again and learn to live with an entirely different life to the one she’d expected to have in her early 40s.

Now on maintenance drugs to keep the myeloma at bay, Gemma recently went to see an orthopaedic surgeon who has tentatively given her the go-ahead to exercise again, albeit cautiously.

She is out on the new bike that her Roller Derby team-mates bought her and beginning, very gently, to run again and in between it all, she’s doing her utmost to live her best life.

“I am not the kind of person who saves things ‘for best’,” Gemma explained, “but when it comes to wake-up calls, there don’t tend to be many bigger ones than finding out you have incurable cancer.

“My cancer was caught quickly, so I am hopeful that I have a good 10 to 15-years left and hopefully by then, there will be a cure. But in the meantime, there’s lots of living to be done and I have lots of plans!”

I interview Gemma weeks before the death of Dame Deborah “Bowelbabe” James, who championed those living with incurable cancer with her ‘Rebellious Hope’ message, but her final words to me are similar to those that Instagram legend Deborah chose when posting her last message.

“I think I’d say to anyone who feels that something doesn’t feel normal to go and see the doctor and have it checked and to keep going back until they get an answer,” she said.

“You know you best. Be your own advocate. And never, ever save things for best.”

Gemma’s blog is at lipsticklettucelycra.co.uk.

An extract from Gemma’s Instagram page, @gemmaseager

February 6 2021:

“The last year has been physically tough. But I’ve realised it’s getting mentally tougher as I come to the end of the initial treatment journey.

I’m not just tired physically, but mentally too. I’m tired of feeling anxious, tired of drugs, and worrying about my health. Tired of hospital appointments and worrying about the future. Tired of staying at home, tired of sitting outside in the cold and tired of having to plan every trip out. I’m tired of worrying about money and I’m scared I’ll never be able to go back to the job I loved.

I’m in pain from my back, and I’m scared to move too much in case it gets worse again. I want it to go away and have my old life back, and knowing that will never happen is tough. Piling a pandemic on top makes it harder. Coping mechanisms are taken away, and my baby immune system gives an extra layer of worry.

I feel like almost everything that made me feel like me, everything I liked about myself, has been taken away. Sometimes I just feel empty and lost.

BUT I know I am resilient. Resilience doesn’t mean bad times don’t affect you, it means you bounce back. And I know I’ll bounce back.”