Tauranga mum's terror: 'I'm trapped in the body of a 90-year-old'

Rebekah Stuart is a 29-year-old mum whose life has been put on hold by a tumour. Photo / Maree Wilkinson

Being told that the tumour inside your body is stable and isn't growing – that there are no other worrying lumps, so your case isn't urgent – should bring a sigh of relief. Normally, that would be a positive outcome.

But for Rebekah Stuart, the diagnosis has brought many more months of being almost bedridden, waiting to reach the top of the surgeon's list, so she can learn for sure that the tumour in her adrenal gland isn't cancerous.

And even when she gets to that stage, the 29-year-old Tauranga mum won't know if she'll ever get her old life back – one where she isn't felled by chronic fatigue, no longer able to live a full life as a wife and mother.

"It's a bit of a sob story," Rebekah tells Woman's Day, recovering on the couch from our shoot. "This tumour may not take my life, but it might take my house and it has already taken a couple of years from my family. The life I had has gone."

It was in August 2018 that the formerly vibrant and energetic young woman was struck with a debilitating fatigue that left her unable to work or spend quality time with her son Levi, now 8.

Rebekah recalls, "I started to feel constantly exhausted. I have a double major degree and had a meaningful job working in HR. I tried to work through it, but a few months down the track, I had to cut down to part-time for a few months – then I had to call it quits completely."

The Tauranga mum doesn't know if she'll ever get her old life back. Photo / Maree Wilkinson

Her usual fitness regime – weight training at her home gym, going running and biking with Levi – became a distant memory, with that energy and drive replaced by lethargy to the point where most of her days were spent in bed.

Being able to have a shower became the definition of a good day. Rebekah even bought a mobility scooter because she didn't want to miss out on any more bike rides with Levi.
"It started with some sort of virus," she tells. "I had flu-like symptoms. They thought it was glandular fever. The flu-like symptoms went away, but the fatigue didn't.

"My GP sent me to see a specialist at the hospital, who ordered all these tests – I had a chest X-ray, my heart was checked, ultra-sounds ... I was thoroughly being looked over. I was diagnosed with post-viral fatigue, but I kept going back to the doctor because six months on, I wanted to know why I still felt like that. They said it was now chronic fatigue syndrome."

As time wore on, Rebekah suffered terrible abdominal pain that forced her to eat only plain rice and turkey for six months. Then in January this year, she was rushed to hospital with suspected appendicitis. Her appendix was removed and she was told she would be referred to get a colonoscopy to confirm irritable bowel syndrome.

"Then Covid happened," says Rebekah. "The public health system was so busy preparing for the worst that they understandably didn't have time for me and many people like me. Then after lockdown, it seemed all the medical staff needed to go on holiday."

She waited for the formal paperwork, but while her surgeon had written the referral letter, he hadn't sent it before he went on leave. She finally had the tests in September, eight months later.

"I was told that they were unsure if the tumour is cancerous, that they are very common and that a simple urine test would let them know if it is messing with me in any way – if it were, they would remove it.

"It was confirmed that the tumour is in fact 'active' and I was diagnosed with Cushing syndrome – caused by the tumour. I was told that it was pretty urgent that it be removed, along with my adrenal gland, and I was referred for surgery.

"My husband, my son and I celebrated. We saw an end to our suffering and a return of normality."

In August 2018 the young mum started suffering debilitating fatigue. Photo / Maree Wilkinson

However, after seven weeks of waiting to find out when the operation would be done, Rebekah had to call the hospital, only to be told the next letter she would receive would be to inform her of her place on the waiting list for an initial consultation with the surgeon.

Her most recent update from the hospital was that because her tumour was stable, she won't be seen until at least late March or early April – and that's not her surgery date, merely her consultation appointment.

She won't know if it is cancer until it is removed. Meanwhile, the chronic fatigue will continue to plague her and she has no hope of returning to the workforce any time soon, meaning Levi will have a lacklustre Christmas.

"My husband found me in tears and decided we have to look into private options," says Rebekah. "Within an hour, we were quoted $23,000 to have the surgery – but it can be done before Christmas."

The pair are prepared to sell their house. They were already struggling to be able to afford to keep it because they don't have medical insurance and because Rebekah's condition wasn't caused by an accident, it isn't covered by ACC.

However, a friend has since suggested crowd-funding via an online donation site, so Rebekah is now asking for financial assistance via Givealittle.

"My life has been a miserable existence for the past two years," she confides. "I'm a 20-something-year-old trapped in the body of a 90-year-old. My bones, muscles and joints have deteriorated.

"Levi has been incredible," she says proudly. It's been two and a half years, so he knows now that if I'm lying down and not talking, it's just the way it is. He'll come and sit with me, and give me cuddles. But he recently lost his grandmother to cancer and cries at night because he's scared that I'm going to die too.

"I've been informed that I'll become extremely sick for around three months post-surgery, so I have a long, hard recovery ahead, but the sooner I get seen, the sooner my family and I get to live again."