Mum given 12 months to live and ‘let down’ by NHS raises £40,000 for new treatment so she can watch children grow up
A mum-of-two given 12 months to live after a cancer diagnosis is raising money for treatment unavailable on the NHS so she can extend her life and watch her children grow up, after feeling “let down” by the NHS.
Darina Gray, 30, from Bedford, discovered a lump in her left breast after having her second child and underwent a double mastectomy to remove the tumour.
She was given the all-clear in December 2019, but two years later the cancer returned, spreading to her liver, spine, lymph nodes and bones.
Now, Darina is seeking Enhertu treatment, which is administered intravenously as part of chemotherapy to halt the spread of tumours, which is approved by the US Food and Drug Administration (FDA) but under review for use in the UK for Darina’s type of cancer.
Each round of the treatment will cost Darina £10,000, and strangers have already raised more than £40,000 for her to receive it after an online fundraiser was set up by her cousin.
Darina, who lives with her husband Jonny, 32, a contract manager, and their two children, Marley, five, and Cobi, four, said: “I do feel let down by the NHS. I couldn’t get an appointment with my breast care team and had to go private to be diagnosed and now I’m fundraising to get treatment.
“I understand that it’s a relatively new drug for my type of cancer but when there’s so many people relying on it in the UK, they should be approving it quicker.
“It’s the added stress of where the money is going to come from while going through cancer.
“The treatment I’m seeking isn’t currently available on the NHS for my type of cancer, and while there is talk of it being made available in the coming months, I can’t wait that long.”
She added: “My cancer is incurable and without immediate, targeted treatment I’ve been given 12 months to live. I have so much to live for and I’m not ready to go yet.”
Darina’s nightmare started after the birth of son Cobi on January 26 2019.
“I decided not to breastfeed because I’d really struggled with my firstborn,” she said.
“So I let my milk dry out and once it had completely dried out, I noticed a lump in my left breast.”
Darina made a GP appointment and was referred to Bedford Hospital.
“I was quite emotional because I had family members who had just been diagnosed with cancer,” she said.
“I had tests done at the breast clinic and was leaving when I received a call that I needed to go back.
“When the doctor broke the news to me that it was cancer, I just burst into tears. I was just really shocked.”
Darina was diagnosed with stage one, grade three invasive ductal carcinoma – a cancer that begins in the lining of the breast and spreads to other tissues in the breast.
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“I was devastated, but hearing that it was stage one made me feel quite optimistic,” she said.
“The initial plan was to have a lumpectomy but an MRI revealed that there were cancer satellites around the main tumour so it was too risky to operate on.”
Instead, Darina underwent a double mastectomy in May 2019 as a preventative measure before starting chemotherapy in July.
She finished her treatment in November 2019 and the following month she was given the all-clear.
For the next two years, she settled back into family life.
“It was nice to be able to focus on the kids and not deal with cancer treatment, but the worry that it could come back was constantly there,” she said.
“There was a point in the summer of 2020 where I found a hard bit on my left side, but checks came back clear.”
However, in 2021 Darina started to suffer from constant headaches and back pain, which she later discovered to be symptoms of secondary breast cancer.
The symptoms came to a head on New Year’s Day 2022.
“I’d bent down to put my son’s coat away and felt a stinging pain in my left side, right where I was originally diagnosed with breast cancer,” she said.
“I looked down and saw little dimples in the skin and I knew it wasn’t right.”
Darina said she struggled to find an appointment during the holiday period.
She contacted the breast care team at Bedford Hospital but was unable to get an appointment until the end of the month so travelled to a private clinic in Milton Keynes for biopsies and a CT scan.
On 19 January 2022, a week before her son’s third birthday, Darina was diagnosed with stage four secondary breast cancer, which had spread to her liver, spine, lymph nodes and bones.
“I’ll never forget anxiously sitting in the waiting room with Jonny for my results,” she said.
“Instead of the nurse, a doctor greeted me and that’s when I knew it was bad news.
“The news that it was incurable cancer made me feel sick, and I asked for a bowl but nothing came out. I couldn’t cry, I couldn’t throw up, I was just in shock.
“Jonny took the bowl from me and was violently sick.”
Darina and Jonny decided not to tell their children about her diagnosis.
“They’re both very young and Marley is autistic and non-verbal, so I don’t think it’s something they would understand,” she said.
Since her second diagnosis, Darina was put on targeted therapy but said it has not worked as well as doctors hoped.
She said: “It shrunk the tumours, but I had other ones growing and one in my liver mutated into a triple negative type of cancer.
“My oncologist told me about a treatment called Enhertu that isn’t yet approved in the UK but has been approved in the US.”
The treatment will set Darina back around £10,000 per round, which she will need once every three weeks.
Last week, Darina’s cousin started an online campaign to raise money.
Darina said: “Unbelievably, within three days we raised £40,000, which meant I was able to go in for my first round of Enhertu at The Royal Marsden.
“It felt so weird paying £10,000 at reception for it but I feel incredibly grateful too.”
Now, Darina is hoping she can continue to receive the treatment while she waits for it to be made available for her type of cancer on the NHS.
She said: “I can’t keep asking for money from people, obviously I understand there’s a cost-of-living crisis and everyone has their own problems.
“I’ve never asked for money before but when it comes to life and death, it’s something that you can’t put a price on, especially when you have kids, I just feel like I have so much to live for.”
Darina started her own charity in 2022 called Gray to Sunny Day which raised £16,000 to send families affected by cancer on day trips, photoshoots and other memory-creating experiences.
She said: “I wanted to do something to help others and hopefully it’s given me a bit of good karma.
“I don’t know what my prognosis is because I don’t want to know.”
She added: “I hope it will give me years of memories with my kids.
“But it’s not just for me, I feel like this has become a fight for other people with secondary cancer to be heard and get the treatment we need.”
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A spokesperson at Bedfordshire Hospitals NHS Foundation Trust said: “As we need to protect patient confidentiality at all times, we do not comment on individual cases – however we are really sorry to hear of this.
“Patients treated for breast cancer receive annual follow-up appointments for five years, have direct access to breast care nurses and are fast-tracked for appointments without having to go back to the GP.
“Like all NHS trusts we are currently experiencing high levels of cancer referrals and are working extremely hard to see and treat patients in a timely matter.”
The National Institute for Health and Care Excellence recently began its evaluation of Enhertu for treating HER2-low metastatic or unresectable breast cancer after chemotherapy.
The first committee meeting to consider Enhertu for this indication is scheduled for September 5, with final recommendations due in November.
To donate to Darina’s fundraiser visit www.gofundme.com/f/wxtv8-life-saving-treatment
To follow her journey, visit www.instagram.com/darinagray