One mother was shocked to find that the egg-shaped lump on her scalp that showed up when changing her hair extensions was stage four cancer.
Sue Holland is now facing a race against time to raise £ 120,000 for private treatment so she can live to attend her daughter’s wedding.
When Sue booked a routine appointment at her local hair salon in May 2018 to have her extensions replaced, she felt a strange lump as she ran a hand through her hair.
While the 56-year-old from Stoke-on-Trent, Staffordshire had suffered from persistent headaches over the past few months, she had suspected nothing scary.
But tests followed, and later that month Sue, whose daughters Rebecca Rushton, 36, and Jadine Diapiazza, 24 are caregivers, was told she had stage four lung cancer that had spread to the scalp and brain, causing the lump .
Now, at the end of two years of NHS-funded immunotherapy, she’s trying to raise £ 120,000 so she can continue therapy privately – and be by her 44-year-old husband Kevin to see her own eldest daughter she marries forklift fiance Dean Charnock, 36, in July.
Sue, a former cafe owner who is no longer able to work, said, “I didn’t get a definitive prognosis, but I don’t think the doctors expected me to live that long.” My advisor said to me, “I don’t know how you’re still here.”
Sue added, “One of the worst parts is that I feel good physically. I get a sting or two here and there, but I have no real pain, which makes it even harder to understand. “
Sue, who smoked 10 cigarettes a day and smoked 10 cigarettes a day 12 years ago, got a persistent headache in March 2018.
Given her GP’s pain relievers, who believed they were stress-related, even though the pills made little difference, she went on with normal life – without for a second imagining that anything scary was wrong.
“Sometimes the headaches got so bad I couldn’t watch TV or look at the lights, so I knew they were probably something pretty serious – but I never thought they were cancer,” she said, adding that Kevin has given up his job as a computer technician to be her supervisor.
But in May 2018 everything changed when she went to a salon to have her old hair extensions removed and new ones sewn in.
She continued, “During the appointment, my old tissue had been removed and I ran my fingers through my hair.”
“I felt a strange lump that was almost egg-shaped. I’ve never noticed it before, “she said.
“I assumed it would be something like a cyst or an ingrown hair follicle, but I decided not to get new extensions in case they covered them up so I could get back to the doctor.”
After examining the lump, Sue’s doctor referred her for a series of tests.
Heartbreakingly, the results showed that she had a type of lung cancer called adenocarcinoma that had metastasized or spread to the scalp, brain, and lymph nodes.
Sue said it is extremely rare for the first sign of lung cancer to appear on the scalp, as opposed to typical indicators like coughing and shortness of breath. “Doctors kept asking me if I coughed, but I hadn’t.”
“I just had headaches and scalp lumps – and none of them made anyone think of my lungs right away. It was absolutely horrible to tell my family, but I promised them that I would be honest and that we would look into it together.”
After surgery to remove the lump on her scalp that was pressing against her brain, Sue – whose family was struck by a previous tragedy when Jadine was nine and her father Berni died in a tragic accident – had six months of chemotherapy .
She continued, “I coped with that pretty well. I was tired, but I was determined to stay strong and move on. “
Unfortunately, she suffered a setback in November 2018 when she was rushed to the hospital with a collapsed lung, which made her family painfully realize how unwell she was.
Then, in January 2019, they got a glimmer of hope when they were offered immunotherapy, which uses a person’s own immune system to fight cancer by helping to recognize and attack the relevant cells.
Fortunately, routine tests showed that her body responded remarkably well.
“Immunotherapy did its job and kept cancer in check,” she said. “I felt good about myself and there seemed to be a real chance to extend my life.”
However, like many lung cancer treatments, the NHS can only offer immunotherapy for a set period of time – in this case two years.
According to the Roy Castle Lung Cancer Foundation, since immunotherapy is a very new form of treatment, data is still being collected on it – although there is some evidence from other forms of the disease such as skin cancer that stopping the disease may not necessarily stop the disease Patient’s response to it.
Despite this glimmer of hope, Sue and her family are devastated to see that any treatment that seems to be working is out of their reach.
She said, “I am very grateful that I even had the opportunity to have immunotherapy, knowing that not everyone does.
“It’s not the NHS’s fault as they were fantastic, but it’s very hard to accept that something is being ripped away from me that seems to be working.” Finding out felt like being hit by a bullet train.
“There’s nothing we can do about it – the rules are the rules – but the panic, confusion and sleepless nights that followed brought us all back to the day I was diagnosed.”
Now the NHS will continue to monitor Sue with regular scans, but her only treatment option is to continue immunotherapy privately, which comes at a high price.
Her daughters set up one to help GoFundMe pagewho has already raised nearly £ 6,500.
But with £ 120,000 needed for 12 months of immunotherapy, they have nearly £ 114,000 left and hope that friendly strangers will help them out.
Aware that every penny counts and with an ever-increasing deadline, they also try to make as many memories together as possible.
This was not easy during the pandemic as Jadine and Rebecca, as domestic servants, sometimes had to stay away from their mother for fear of exposing her to Covid-19.
Sue concluded, “We have to be incredibly safe, but I’ll see you outside at every opportunity. We’re a very close family and it would mean the world to us to reach them GoFundMe aim and extend my life as much as possible. ”
She added, “Nobody knows what the future holds, especially since immunotherapy is so new, but adding every day, week or month is a bonus.”
With heartbreaking honesty, Jadine confessed that she is not ready to lose her mother.
She said, “I’m not getting on well. I lost my father when I was nine and I’m not ready to lose another best friend. I’m just starting my life and we still have so many memories to make together.”
Jadine concluded, “Even so, we’re so overwhelmed by the response to that GoFundMe page. It showed us that there are nice people out there. ”
Like her sister, Rebecca is determined to do whatever she can to fight for her mother – not least to make sure she is here to see her get married.
“Mom is the true matriarch of the family as well as a beloved sister, daughter, wife and friend,” she said.
“I’m getting married in July and can’t face the thought that she won’t see me walking down the aisle. Even if Covid said we couldn’t have other guests, I only want them there that day,” Rebecca continued.
“Now that immunotherapy has stopped, we don’t know how quickly the cancer will spread, which scares me. I know everyone will die one day, but she’s still so young and neither of us is ready to say goodbye . “