My daughter died of cancer — now I design clothes adapted for patients

When her beloved daughter Emily Rhodes died from a brain tumour aged just 24, Joanne Nicholson was not sure she could carry on without her. “I really hit rock bottom,” she remembers. “I didn’t want to be here. I was no good for anybody; I couldn’t talk to anyone. I didn’t leave the house, and I just thought, ‘I’m going to die – I’m going to kill myself’. But I didn’t want to leave [Emily’s brother] Matthew without a mum.”

In the years since, the family has slowly emerged from the heavy cloud of grief, helped by a project that will create a lasting legacy for Emily. They have now launched EmAble – a simple clothing range designed for people going through treatment or illness.

Recalling the moment when the seed of an idea was planted, Joanne says: “I thought, ‘I can’t cure anybody. I’m not a doctor. The only thing I can do is help people going through a similar journey to the one Emily went through’.”

Joanne, her partner Martin, Emily and Matthew had emigrated to Australia in 2012, where Emily started a new job and moved into her first home. She was working long hours and partying as a 21-year-old does, so doctors thought stress was to blame when she began having seizures.

Emily insisted something more was wrong, and when her MRI scans were reviewed by a neurologist, it was confirmed that she had a brain tumour. A second scan showed two tumours.

She was rushed into surgery in August 2016, but was told the following January that her condition was terminal. Her boyfriend proposed; they postponed their wedding to allow time for her to recover from further surgery… and then he broke off the engagement.

Throughout this tumultuous period, Joanne says Emily was a fighter. “She never once said, ‘Why me, ma’am?’ She had the outlook: ‘OK, I’ve been given this. I’m going to fight it everywhere, every step of the way’.”

Despite her daughter’s enormous strength, Joanne watched the disease and treatment side effects take a heavy toll. She says: “You often wouldn’t know somebody’s got a brain tumour until they start their medication. Sometimes it’s not actually the illness that makes you ill, it’s your treatment.”

The steroid dexamethasone caused Emily to gain around six stone, and she went from a size six to eight, to a size 18, in a couple of months. The drug made her face swell, and her legs became so swollen she could not walk.

“She lost a lot of her identity,” Joanne says. “She wouldn’t leave the house. Once, she was turned away from a bar because they thought she was drunk, but she was actually losing her sight. Everything she knew around her changed. She said to me, ‘Mum, I know I’m dying from a brain tumour, but I need to live every day’.”

The family moved back to England so Emily could be surrounded by friends and family in York. She thrived for a time, before deteriorating around Christmas in 2018. She was admitted to a hospice and died on April 24, 2019.

This harrowing experience made Joanne aware of a problem she wanted to solve. Emily had struggled with the effects of harsh drugs on her body, and Joanne had tried to adapt her daughter’s clothes, putting in drawstrings so she could tighten or loosen them as her weight fluctuated. But Emily was never truly comfortable.

“I needed to come up with something that you could just throw on to go to an appointment, feel comfortable in, feel in control of yourself,” Joanne says. “When Emily was having treatment, everything was taken out of her hands. She’d lost a job, she’d lost her identity, and she wasn’t even in control of what she could wear. If I could help one person, that’s what I needed to do.”

Joanne drew on her experience working in an NHS radiology department to draft designs, then sought out a product developer to bring them to life and a manufacturer in Portugal to make them.

At first glance, the resulting grey, slightly oversized hoodies could be the latest offering from a popular loungewear brand. Upon closer inspection, however, there are a number of strategically placed zips – two for chest access, two on the forearms, and a kangaroo pouch.

These discreet openings provide easy access for blood draws, intravenous infusions, breast or chest examinations, port access, ECG monitoring or breastfeeding, to name but a few uses. Crucially, they allow the wearer to open only as much of the garment as needed, helping them remain covered, dignified and in control.

The range also features two styles of jogging bottoms – one with a standard elasticated waist and another with a stretchy shirred waist that can accommodate weight gain or a medical device such as a stoma bag.

The jogging bottoms have zipped openings on the outside of each leg. “A lot of ladies that have had breast cancer need lifelong injections in the thigh called Herceptin, and actually that takes about five minutes with the needle in the leg,” says Joanne. “So you’d have to sit with your trousers round your ankles. This just allows you to unzip it; you don’t have to take anything off.”

Drawcords at the ankles allow for an open or gathered fit, providing flexibility for people experiencing lower leg or ankle swelling, including oedema. All the zips have a self-locking mechanism to prevent unwanted exposures.

The clothes receive a positive review from Pam Woodall, 59, a friend of the family-turned EmAble model who had a double mastectomy 12 years ago. After losing her sister Pauline to breast cancer and seeing her mum go through treatment, Pam underwent genetic testing which revealed she had a 95% chance of developing breast or ovarian cancer. She opted to have her ovaries and both breasts removed.

After the surgery, Pam had expanders fitted to stretch her skin in preparation for implants. She returned to hospital once a week for injections to slowly fill the balloon-like devices.

The reconstructive process was gruelling but important. “The expanders, injections and appointments were all tough, but they helped me to feel like myself again,” she says. “Every time I went, I had to take my top off because you have sort of portals at the side of your chest where they would inject.

“Looking back, adaptive clothing would have made those moments so much easier. If I had one of those tops, I could have just unzipped.” Pam believes the clothing would also have benefited Pauline, who died in 2011 at age 51. She remembers sitting with her sister during weekly chemotherapy sessions, listening to CDs by Adele.

“She was having chemo every week, and she was cold,” Pam says. “Pauline used to buy elastic waist trousers. The clothes Jo has made are warm, and the jogging bottoms expand or tighten. Pauline would have loved it. She loved the clothes, and she was trendy.”

Pam hopes the clothes will make treatment feel a little less “cold and clinical” for wearers. She adds: “People say, ‘Oh, you’re brave’, but I never even thought about it. I just thought it was going to save my life.

“I had to do it, I’ve got three children. My mum lives with us now, and I look after her. And I did it for my sister. She’s got three daughters, and I’m there to look after them as well.”

As EmAble grew, Matthew, 27, came on board and found the experience helped him cope with the pain of losing his sister. He was treated for PTSD, the result of “witnessing her last weeks in the hospice, her just wanting to be put out of her misery”.

Matthew adds: “What really affected me is that we couldn’t do anything about it. For the last two and a half, three years, we had dedicated our lives to looking after her and making sure she was well and comfortable. But in the last few weeks, all I could do was just let her know we were there.

“For the first five years [after her death], all I could think about was those horrific last days, last weeks of her life. A combination of cognitive behavioural therapy and working on this business has done wonders for me, being able to process Emily’s death and remember Emily for who she was before her illness.”

Matthew and Joanne remember Emily as a cheeky and loving girl who adored dancing – and Dirty Dancing star Patrick Swayze, so much that she missed two days of school when he died of pancreatic cancer in 2009, Joanne smiles.

The hoodie retails at £99.95 and the joggers at £79.95. Joanne and Matthew know this might be pricey for some people, particularly if their health conditions create added financial pressure, but the clothes are made to last. The business makes only a small profit and has to cover the costs of product development and production.

They have partnered with a Yorkshire-based children’s cancer charity and hope to develop a range of kidswear next year. They also plan to grow EmAble’s website into a space where patients can connect and share experiences, creating a community. “Even if they don’t buy the garments, it doesn’t matter; we want to be there for everybody,” Joanne says.

Matthew adds: “When Emily passed, there was no direction in our life or purpose for years. Beginning this brand, I think it’s given us purpose in life.

“It’s such an exciting time because there are so many different directions we can take, and there are so many different ways we can help people. This is just the beginning. We’re hoping to be a mainstay and for Emily’s name to live on much longer than ours.” Find out more and shop at emable.co.uk.

• When life is difficult, Samaritans are available day or night, 365 days a year. You can call them for free on 116 123 or visit samaritans.org.