Jenny Nixon is no slouch. She’s a mother to two sets of twins, who she raised as a single mum from when they were six and three years old, and is a proud grandmother to four. She runs her own baking business, and is the self-professed ‘Queen of Melting Moments’ in Wagga Wagga. She is a real ‘get in and get on with it’ kind of girl, with a sharp sense of humour and a strength that’s hard to miss.

But Jenny has faced more than her fair share of challenges in life, including not one, but two bone marrow transplants. Ask her about it, and she will tell you, “The BMT was a walk in the park compared to some of the challenges in my life.”

A Diagnosis that Changed Everything

Jenny’s journey began on Christmas Eve 2016, when she was diagnosed with myelodysplasia, a rare and serious blood disorder. “It’s a damn scary diagnosis,” she recalls. For six months, she tried treatment with azacitidine, but her condition worsened. Her haemoglobin would drop to 41 (normal is 120-160), and she needed five bags of blood every week just to function.

“The first week after a transfusion, I would feel fabulous. The second week, mediocre. By the third week, I couldn’t manage at all. I would regularly find it difficult to have a shower or walk to the front door.”

After 6 months of azacitidine not working, it was time for her to have a bone marrow transplant.

She travelled to Sydney, in February 2018, where she had her bone marrow transplant at St Vincent’s Hospital. And it was tough going.

Not the transplant itself.

“That was easier than I thought,” Jenny said. “It was somewhat of a let down,” she jokes, “because it was just into my arm like a blood transfusion.”

But the recovery was anything but easy. A week later Jenny developed a bowel infection and went to the Intensive Care Unit. After a further three weeks, she developed another blood infection, a bowel infection, severe pneumonia, and kidney failure. “So off to ICU I went, and was intubated. My children were called to say goodbye. I don’t know how I pulled through and survived.”

Jenny spent four months in hospital and was bedridden for most of that time.

“I had to learn to walk again before I was allowed out. I had to prove I could cook a piece of toast and boil a jug before I left hospital.”

She failed that test twice, but got it right the third time.

“It was a long, slow recovery,” Jenny said. “I basically didn’t get out of bed for most of the time I was in hospital. I couldn’t even walk to the toilet. I couldn’t walk to the shower. I couldn’t do any of those things. But I just persevered and pushed on.”

A Second Blow – and a Second Chance

Four and a half years later, just as she was preparing for a long-awaited trip to Africa, Jenny received devastating news: she had developed acute myeloid leukaemia (AML). Her plans were cancelled, and she was rushed into treatment.

In June 2023, Jenny had her second bone marrow transplant. This time, the recovery was quicker, just 36 days in hospital, but not without complications. She experienced fluid around her heart and lungs and developed GVHD (graft-versus-host-disease) on her face. She still described the second transplant as “a walk in the park” compared to the first.

Coping with Life After Transplant

Today, Jenny lives with ongoing fatigue and health challenges. She’s on a disability pension and no longer bakes for cafes. But she’s found new ways to stay active and connected, volunteering with Cycling Without Age, sewing, ironing and helping others where she can.

“I’m on fire in the morning. I get things done early. But I don’t overcommit. I’ve learned to cope.”

Don’t Fight the Fatigue, Manage it

Jenny has good days, and other days where her energy level is not so great. She says, “I will sleep for three or four hours most days, after sleeping all night. I don’t fight the fatigue, I manage it. If I need to sleep, I sleep. I don’t have any expectations of each day because I don’t know what each day is going to bring. I have days where I don’t function at all, and some days I don’t last past 11 o’clock in the morning.”

Jenny has found ways to work around these kinds of constraints. If she does the groceries, for example, she will bring in the perishables and put those away, but if she’s feeling tired, anything that doesn’t have to be brought in from the car just stays in the car for a little longer.

“If the car boot becomes my pantry? Well, that’s how I cope. Cleaning the shower happens while I’m in the shower. I do this wall today, that wall tomorrow, and that wall the next day. This is how I’ve learned to cope to do what needs to be done,” Jenny said.

The rest she lets go of, or she asks for help.

Ask for Help When You Need it

“Once upon a time I would never ask for help. Now I don’t hesitate. It’s just become second nature. If someone offers to help, I accept.”

Jenny has no hesitation in asking, and gratefully accepting, offers from friends to take her to and from the hospital for her appointments.

She has been blessed with a supportive group of family and friends. While she was in hospital, friends took care of her house back home in Wagga. Others sat by her bedside holding her hand and begging her to get better. When she returned home, care packages appeared on her doorstep. “All of those things had a huge impact on my recovery knowing those people cared about me” said Jenny.

Have a ‘Get on with it’ Attitude

Jenny’s strength lies not just in what she’s endured, but in how she’s chosen to face it. Jenny describes herself as a “suck it up and roll with the punches” kind of person, and she thinks that her mental attitude really helped her get through her transplant.

Jenny came up with a saying, which has stuck with her and guided her through her recovery – Positivity leads us down the right road on the highway of life.

This has become a bit of a mantra for Jenny. She doesn’t dwell on what she can’t change. Instead, she focuses on what she can do – and does it with gratitude. “I’m grateful for the bad days because they remind me how many good days I’ve had. Every day is a bonus.”

Jenny has faced survivor’s guilt – knowing others who didn’t make it – but has turned that into a deep sense of appreciation. “I’m extremely lucky I’ve pulled through. What choice do you have? You move forward and do what you can to get through.”

Sharing Her Story to Help Others

Jenny is telling her story to help others facing similar journeys. She encourages others to ask for help, maintain their energy, and stay positive.

“Don’t fight the fatigue – manage it. Be kind to yourself. If you don’t look after yourself, you can’t expect your doctors to.”

She has no regrets. “Absolutely not,” she says. “The opportunities you have afterwards – not just life, but the moments – you can’t put a price on that.”

More Tips on Managing Post Transplant Fatigue

If you’d like more information on managing post-transplant fatigue, we recommend listening to this episode from The Straight & Marrow Podcast: Searching for the Fountain of Energy