Mother diagnosed with cystic fibrosis, anorexia and incurable cancer says she ‘doesn’t feel afraid of dying any more’

A mother who was diagnosed with cystic fibrosis (CF) just days before her 30th birthday and later told she has myeloma – an incurable type of blood cancer – said she has “taught (herself) a whole new script for death” and, rather than feeling afraid, she feels “empowered” by what she has overcome.

Ellie Allman, 42, who lives in Hadleigh, Suffolk, with her husband Steve, 44, a charity consultant, and son Harvey, 13, used to work as a specialist adviser for vulnerable young people but she had to retire, aged 35, after being diagnosed with CF aged 29.

CF is an inherited condition that causes sticky mucus to build up in the lungs and digestive system, and while Ellie did not “feel anything initially” when she received her diagnosis, she “struggled mentally” later on and ended up developing anorexia, as she felt she had “no control over anything”.

“I was off work, I was frustrated, I was angry, my body didn’t feel right CF-wise – I had no energy, I couldn’t do what I wanted,” Ellie told PA Real Life.

“I was spending my days weighing everything I ate and just constantly doing the maths.

“It seems ridiculous now, but it made so much sense at the time to that very determined person who was just clinging on to any form of normal life.”

After becoming eligible to take Kaftrio in June 2021, a medication which significantly improves lung function, she noticed a vast improvement in her health.

However, in less than a year, Ellie “randomly” became very unwell, and this led to the devastating news she has incurable cancer.

After this, she underwent four months of chemotherapy alongside immunotherapy, followed by a stem cell transplant to replace the damaged blood cells with healthy ones in March 2023, and then a further two months of consolidation chemotherapy which included immunotherapy.

She lost her hair, felt “exhausted” and anxious, and experienced pain “worse than labour contractions” from the “harvest of (her) stem cells” before the transplant, but she knew the pain would not last forever – and she said the support she has received from her husband, son, doctors, consultants and the charity, Ending Life’s Taboo, has been invaluable.

She is now in remission and undergoing maintenance chemotherapy, and while she has experienced feelings of anger and resentment, she knows she can handle anything that her health throws at her.

“I’ve taught myself a whole new script for death; I find it difficult to live with failing health, but I don’t feel afraid of dying any more,” she said.

“We don’t get a choice, that’s just how it goes, but I think having the right people around you is so important.

“I think it’s really natural when you’re young, or when you’re scared, to unintentionally isolate yourself or become withdrawn, and that has never ever worked for me.

“I have to work hard not to lose myself within these diagnoses, and I have to remind myself that I’m still the person I was before my diagnosis.”

During her childhood, Ellie developed whooping cough “in succession” – a bacterial infection of the lungs and breathing tubes – along with other chest infections and bouts of flu, but she was otherwise fit and healthy and used to run, swim, and was even a sports captain at school.

She remembers certain periods of her life where she felt extremely fatigued and achy, but since her mother preferred alternative and natural medicines, Ellie rarely visited the doctor – and given she had “coughed (her) entire life”, she was “dismissive” of her symptoms.

Later on, during her pregnancy, Ellie developed repeated chest infections, experienced difficulties with her speech, and could not clear her throat, but it was not until after she gave birth to her son Harvey, now 13, in 2010 that she underwent further testing.

In February 2011, just days before her 30th birthday, it was confirmed she has cystic fibrosis – and, at first, she said she was “not willing to make room for CF in (her) life”.

“You’ve lived your whole life not ill and then suddenly there’s this label,” Ellie said.

“I didn’t feel anything initially, but I struggled with it later on, mentally.”

According to the charity Cystic Fibrosis Trust, CF can be diagnosed during a new-born screening, which is carried out as part of the heel-prick test that all babies in the UK receive, but since this was only introduced nationally in 2007, this was not available for Ellie.

Moreover, Ellie’s rare genotype made her CF even more difficult to diagnose.

She underwent treatment in the form of intravenous (IV) antibiotics and physiotherapy sessions and noticed an improvement in her health, but when she started experiencing difficulties with her digestion – caused by a build-up of thick mucus – she started to feel “really frustrated with the world”.

The side effects of the prescribed drugs also meant she could not conceive again – and while she is extremely grateful for her family, this had a “massive” impact on Ellie at the time.

Ellie was then told she needed to take the medication Creon with food, which aids digestion, except for with fruits and vegetables, and this led to her developing anorexia in 2016.

She said her head would “scream at her” but she could not “free (herself)” from negative thoughts that would body-shame her.

“I had no control over anything, it was the perfect storm in a way; the perfect circumstances for me to use that as a control mechanism,” she said.

Ellie became very weak after her “dramatic weight loss” of more than four-and-a-half stone, but after realising she needed to prioritise her health and time with her family, she underwent treatment and therapy to “reframe” her negative thoughts, so they were no longer a “dominant” force in her life.

In June 2021, Ellie started taking Kaftrio, and she described it as “a miracle drug”, but approximately 11 months later, she began experiencing a “burning pain in (her) chest”.

This led to the heart-breaking news in July 2022 that she has myeloma – a type of blood cancer, which is incurable – and the pain caused by treatments was unimaginable at times.

She said: “Since Kaftrio thins the mucus, the high-dose chemo just ripped through the mucus in my throat, so I couldn’t swallow; the pain was insane.

“My throat was blistered and ulcerated, so I couldn’t eat and I was put on to a feeding tube.

“But I knew I had to get through it because if I stay in remission for two years, I could have a second transplant in future.”

Ellie is now in remission and is undergoing maintenance chemotherapy, which she said “feels like a breeze in comparison”, and she is continuing to take Kaftrio, meaning the symptoms of her CF have “massively reduced” and she can enjoy the “simple things in life again”.

She likes going on dog walks, meeting friends for a drink, and spending time with her “favourite people”, as that “makes everything else feel better” – and looking back now, she feels “empowered” that she has handled her CF, anorexia, cancer diagnosis, and treatments.

While myeloma is incurable and Ellie has had some “existential thoughts”, she said processing what may happen in life has been “freeing” and she has always held on to hope.

She has applied to become a magistrate and hopes another “miracle drug” like Kaftrio may become available during her lifetime to treat the cancer.

She added: “Even in the most testing of times, every time I have found something positive to focus on or something to hope for and that has kept me going.”

Ellie’s cancer is not linked to CF. To find out more information, visit: www.cysticfibrosis.org.uk/what-is-cystic-fibrosis/how-does-cystic-fibrosis-affect-the-body/cystic-fibrosis-complications/cancer