Can you help family raise £30k to fund mum-of-two's cancer treatment?
South Cambridgeshire mother-of-two with incurable cancer needs to raise £30,000 to pay for specialist treatment not available on the NHS.
Lysa Kemp, 34, is trying to fund peptide receptor radionuclide therapy (PRRT) to get more time with husband Stuart, 47, daughter Carys, 13, and 11-year-old son Kai.
“I was 32 when I was diagnosed,” Lysa said. “Everything was completely thrown upside down. I think I knew it was cancer but what I hadn’t prepared myself for was being told it was incurable.
“As a mum with young children, it was heartbreaking. I thought my whole world had ended and I just didn’t know what I was going to do.”
Lysa led a healthy, active lifestyle and was working as a teaching assistant at Meldreth Primary School, so she and Stuart were devastated when she was diagnosed with pancreatic neuroendocrine – the same type of rare cancer that claimed the life of Apple founder Steve Jobs.
“I was coming home from work one day and I felt disoriented and confused like I was drunk but I didn’t know what was wrong,” Lysa said. “I came home and had lunch, a drink and felt better.”
She suspected she might be diabetic and following a GP appointment was sent for tests at Addenbrooke’s Hospital.“They said you’ve a form of cancer called neuroendocrine cancer, it’s called an insulinoma and it’s on my pancreas, my lymph nodes and my liver,” Lysa said.
A week later after biopsy tests, doctors confirmed that it was cancer and that it was incurable.
Lysa, from Meldreth, was told she couldn’t have surgery because the cancer had spread to her liver but that it could be managed.
An insulinoma is a tumor of the pancreas that secretes insulin and it would cause Lysa’s blood sugar to drop quickly and regularly to life-threatening levels.
“I was having to set an alarm for every two hours throughout the night so I could have something to eat or drink - and through the day,” said Lysa.
She couldn’t be left on my own in those first few months and later Stuart gave up work to become her full-time carer.
“I’d get the shakes, I’d be sweaty and I be disorientated. I would have to have a sugary drink or some jelly babies to bring it up and some carbohydrates to maintain it for a period of time.
“Stuart was basically babysitting me at that point,” she explained.
In the middle of the night, Lysa was eating cornflower mixed with yoghurt - a recommendation from a dietitian - because it was slow-releasing.
“It was disgusting. But you do whatever you can,” said Stuart. “The problem with what Lysa’s got is that no-one really knows and it’s a learning curve for the hospital at the moment as well as for us.”
As the couple struggled to manage Lysa’s blood sugar levels, she was admitted back into hospital where she underwent a liver embolisation to try and block the blood supply to one of the tumours on the liver.
“I ended up quite poorly after because where they blocked that blood supply to that tumour it produced lots of extra insulin and hormones and my blood sugar crashed.”
When Lysa returned home she was having to constantly eat, with Stuart injecting her three times a day with a hormone injection to stop the tumours growing.
“It was horrendous those first few weeks. The consultant’s biggest concern wasn’t the cancer - although they didn’t want it to spread - it was the symptoms. They wanted to get them under control so I could have a quality of life because I couldn’t do anything. I couldn’t exercise, I couldn’t swim, I couldn’t walk because my blood sugar would crash all the time.”
Shortly after Lysa was told of PRRT and doctors began assessing her suitability for the treatment.
“I’d been told I had incurable cancer, I couldn’t have surgery and I couldn’t have this treatment. My options were limited anyway and already two of those options had been taken away. It was awful. I didn’t know how to get through it,” said a tearful Lysa.
After several scans including a specialist one in Liverpool, support from the hospital and counselling, Lysa was told she could have the treatment but it was no longer funded by the NHS, having been so in 2015 and still being available in Scotland.
A request for the treatment from NHS England was rejected and then, rejected again on appeal.
Addenbrooke’s agreed to fund the treatment themselves on compassionate grounds for which the family are forever grateful. They funded four cycles at £10,000.
“We thought we were out of options,” she said. “We felt so lucky. We were over the moon.”
This treatment gave Lysa almost 12 months with no symptoms so she has been able to enjoy time and make special memories with her family and friends.
“It was almost instant. I felt like a new person. I could sleep through the night within a few days. I got this new lease of life,” she said.
During this period family, friends and the local community raised money for the couple to help the family create special memories.
“We made some good memories,” said Lysa. “We started enjoying things but it never left my mind. You take it for granted but you still you know deep down that she’s got cancer but we did have some fun days.”
But it wasn’t easy and Stuart continues to struggle with the incredible financial support they’ve received so far.
“It’s really hard for us who have always worked all our lives to be centre of attention like that. We’d always supported ourselves and we’ve never asked for anything and these people went out of their way to do it. It was really touching,” he added.
Lysa added: “Everything we done on these days we went to the theatre or the seaside it was the thought that this could be the last time. Everything we done in those days was really difficult. It was tough to think about whether we’d do this again.
“We went a friend’s son’s 18th and I thought, well I might not see my child’s 18th although the things were fun it always stirred up things in the back of my mind.”
“Although this treatment was fantastic, I always knew the symptoms were going to come back. I almost think dealing with it the second time round is harder.”
The couple have always been open and honest with their children despite some of their questions being hard.
Lysa is now on morphine as she’s been in a lot of pain since Christmas and doctors have told the couple to get the money ready. Should they not raise the money, the couple will be offered chemotherapy which “might be successful, might not”.
“It was great for the children to have some normality back for a while because it’s been a huge struggle for them. I can cope with the pain and all the tests but emotionally it’s much harder to deal with. That’s the biggest battle of all, having to make memory boxes and write letters to the children. It was tough. All the way along I’ve struggled much more with the emotions. ”
“But I don’t want to feel miserable in the time I’ve got left and taking that time away from them. I’ve got to live every day for them. I have to cope. I’m still a mum and I’ve still got to make their sandwiches for school.”