Only weeks after receiving the devastating diagnosis she had caecal cancer – a form of colon cancer – 62-year-old Lillian Evans found herself back in the doctor’s office and looking at the results of a CT scan.
“It lit up like white noise on an old television set,” is how her partner Don described the sight.
The heartbreaking truth that the pair were looking at was that tumours had spread to her abdomen and pelvis and she was given as little as nine months to live.
She first suspected something might be wrong while on a family holiday in Bulgaria with her grandchildren. Lillian felt a dull ache in the right side of her body but as someone who never went to the doctors, the mum of two waited a couple of months before getting it checked out.
At first it was thought to be nothing too serious, perhaps a swollen liver, and Lillian had a number of blood tests and ultrasounds that showed nothing out of the ordinary.
However, only weeks later, the story changed drastically and Lillian, who is now 64, found herself writing her own will.
“Nothing can prepare you for hearing that, it went from zero to a hundred quite quickly and I remember asking one nurse, ‘am I going to make it?’ And she just said no. And then the next question was, ‘well, how long have I got’.”
After hearing that she had between nine months and two years to live, the grandmother, who moved from Pontarddulais to Blackpill in Swansea, went into work mode and immediately began organising her will, home and getting her affairs in order.
“It was a kick in the teeth, of course there are a lot of tears and people were crying. It felt like someone had smacked me in the face and then I just thought, ‘no let’s get on with it’ and started putting everything in order,” she added.
In December, 2018, Lillian began having chemotherapy every two weeks to extend her life.
“Everyone knows chemotherapy is tough – I was sick, I couldn’t eat, I couldn’t stand barefoot on the tile floors because the shock of the cold would go through my body,” said Lillian, who was born in Birmingham.
But despite the crippling treatment and the waning affect it had on her physically, Lillian maintained that, mentally, she got stronger.
“I suffered a blood clot and was in hospital on Christmas Eve but thought I can’t let my grandchildren down and got out of hospital on Christmas Day to see my grandkids. We’ve laughed a lot about things, I think attitude is everything – you don’t realise how strong you are until you go through something like it.”
But despite losing her hair, constant vomiting, severe weight loss and her blood clot, after the first batch of chemotherapy, Lillian faced a turning point and something switched in her mind: “I just thought, this is not going to beat me. I want to live. I don’t want to die. So I said right, when can I have another batch of chemo?”
After another round of the aggressive treatment, Lillian and her partner of 22 years, Don Moore, 67, couldn’t believe their ears after their oncologist told them that the cancer could be operable, which could result in the grandmother’s life being extended another five to seven years.
“It’s a horrible word, terminal. The word follows you in everything. I know I am dying, this is going to kill me. But another seven years could mean seeing my grandchildren grow up, going away with my family and we don’t know, medically, what could happen, seven years is everything,” said Lillian, who moved from Pontarddulais to Mumbles five years ago.
Upon receiving the good news that Lillian’s life could be extended, then came the bad news that the treatment could not take place in Wales, so the couple made an application to the Wales Individual Patient Funding Request Panel (IPFR) for an operation in Basingstoke Hospital, which was the only facility in the UK that had the specific machinery.
IPFRs are requests to a health board to fund health care for an individual outside of treatments and services available on the NHS. The application is studied by a group of people on an independent panel simply on medical grounds, they are determined by weighing up the benefits of the treatment and the cost.
But the funding request for the £70,000 operation was denied on a basis of ‘individuality’ and Lillian’s case not being ‘individual enough.’
Remarkably, if Lillian still lived in England the operation would be funded.
“It’s a postcode lottery, it’s luck of where you live and it’s crazy because it’s your life that they are playing with. I’m willing to do anything, I’m willing to do any tests or any operations. I want to live, nobody wants to die and without this operation – well that’s it.”
Now Lillian and her family have started a GoFundMe page in a bid to raise a staggering £85,000 to fund the life-extending operation but time is not on the family’s side and the 64-year-old needs the operation as soon as possible.
“We can’t wait, I haven’t got the time. I don’t think we’re going to raise enough money in the short amount of time,” said the former receptionist who previously worked in Llanelli.
If Lillian, who is also a stepmum, is not able to raise the staggering amount of money then the couple will have to move to England away from all their family and friends in Wales and miles away from Lillian’s nurses and oncologists.
“We are a really close and solid family, it’s been hard to see them go through it, especially my grandchildren. I couldn’t tell them at first that it was terminal. But I haven’t got time on my side and will move to England if we have to and then all the money already raised can go towards helping other cancer patients in the future,” she added.
Lillian maintained that if the couple were unable to raise the money and had to move to England then all the proceeds from the GoFundMe page would go towards getting the equipment used for the life-extending operation in Basingstoke Hospital, in Wales.
“We’re not sure what comes next really or what the future is going to look like,” said Don.
Lillian added: “All I know is that I don’t want to die, no-one does. People are always asking me what does it feel like knowing you are going to die, and I say we’re all going to die. It’s about attitude and I think I am a bit of a toughy so if this operation can give me longer to be with my family then I will do anything for that.”
A spokeswoman for Cardiff and Vale University Health Board said they were unable to comment on individual patient cases.