Mum-of-two Amy Rainbow was just 26 when she was diagnosed with breast cancer. Now the disease has spread to her brain, her last hopes rest on a progressive treatment that is too expensive to be offered on the NHS
A mum of two who is living with stage 4 cancer is begging for the chance to spend more time with her children, who have no idea their mother is so sick.
Amy Rainbow, 30, from Middlesborough doesn’t know how much time she has left, after she was first diagnosed with treatable breast cancer in 2021, aged 26.
Her daughter Harper was just three months old at the time, while son Elliot had only just turned four. Amy needed six months of chemotherapy, a double mastectomy, radiation treatment and a year’s course of cancer drug Herceptin.
Just six months after completing her treatment and thinking she’d got the all-clear, Amy began suffering with intense headaches and eyesight problems. Although she pleaded “time and time again” for doctors to give her a brain scan to rule out any more tumours, she was told the pain was “all in my head” and sent to counselling.
Amy and her husband Steven – who had met when they were 17 and married just weeks after her diagnosis – decided to raid their savings to get a private opinion. “The doctor said to me, ‘there’s more chance of me dropping dead from a heart attack than of you having anything in your brain’, and refused to give me a scan,” she recalls.
Three months later, Amy went to A&E with an agonising migraine. “I had been throwing up, it was just horrendous,” she remembers. “I just couldn’t cope with the symptoms at that point.”
She was finally given the scan she’d been begging for, which revealed her breast cancer was back, this time as stage 4, with brain metastasis – a tumour lurking in her brain. It was the day of the couple’s wedding anniversary, and Amy’s world crumbled.
“We were both absolutely gutted. We’d been waiting there for four or five hours and the staff kept dismissing me, saying ‘oh, you’re just here for reassurance’. But when they found the tumour they had to rush me into theatre for emergency surgery.
“In that moment it was like my whole life flashed by. I knew straight away what that meant, because I know how aggressive cancer is in the brain. Once it’s gone somewhere else in the body, there’s no going back then. I just thought, oh my god, I’m going to die.
After the life-saving op, Amy had to have more targeted radiotherapy and needed to choose how much of her cancer journey she should share with her kids. To this day, Harper and Elliot have no idea that she is so unwell. “We decided not to tell them anything,” she explains. “We just wanted to protect them from it. I lost my hair early on in one of the first rounds of chemo, so my kids are used to me being bald. I always wear a head wrap when I’m out, so that’s just what they know.”
The treatment has taken its toll on Amy’s ability to parent as she’d like, too. “They see me being tired all the time and know that I can’t do things that I like, so they just sort of think I’m a bit lazy… but I’d rather them think that than know the reality,” she says.
Heartbreakingly, three months after the surgery to remove the brain tumour, Amy’s medical team delivered the devastating news that her cancer had spread into her brain fluid, in a condition known as leptomeningeal disease. Tumours have now started growing in the lining of her brain, and her prognosis is bleak: without treatment, patients with the condition often die within months.
Amy and Steven’s hopes now rest with a groundbreaking treatment that could extend her life for a few more months while she undergoes more chemo. Dendritic Cell Immunotherapy takes blood from the patient and ‘cooks’ it in a lab for two weeks, adding cancer-related antigens that help the body to activate its own immune system against the cancer cells.
Once put back into her body, the cells seek out and destroy cancerous tumours – and the benefits are life-long. Sadly, while the treatment is available in the UK, it is considered too expensive to be offered on the NHS, so Amy is hoping to raise £30,000 from her GoFundMe page in order to pay for it herself.
“My goal would be to be completely cancer-free, but I don’t know if that’s too hopeful,” she says. “But you’ve got to have hope.”
Steven, also 30, says his incredible wife is “beautiful, strong and determined” as she navigates yet another round of gruelling treatment. “It’s hard seeing the person you love going through this awful illness,” he says. “You just wish you could take it away from them in a heartbeat, and for you to be the person going through it, not them.”
While some parents in her situation write future letters to their children, Amy feels like that may be tempting fate. “I’ve made memory boxes for both of them and I put bits and pieces in them, but I’m still hopeful for the future,” she says.
“I want them to have me here for as long as possible. And for them to have a healthy mum, one who can actually look after them properly. Even though I’m there, I’m not really there, because I can’t do all the things I used to do for them. My dream is to take them on holiday and to make nice memories with them.”
To donate to Amy’s fundraiser, go to www.gofundme.com/f/help-raise-ps30000-for-amy-rainbows-private-treatment.