At least 20,000 cancer deaths per year could be avoided in the UK with a national commitment to fix the NHS and invest in research and innovation, according to Cancer Research UK. This comes as an analysis published in the British Medical Journal (BMJ) of remote NHS doctor consultations between 2020 and 2023 concluded that “deaths and serious harms” had occurred because of wrong or missed diagnoses and delayed referrals.
Here, one woman shares how she lost her partner to pancreatic cancer after the warning signs were missed by doctors, and why she’s campaigning for a better approach to diagnosis and treatment.
I met Stu in 2020, during the pandemic. Prior to him I’d had a series of awful internet dates and had more or less given up on love – but then one of my clients, in my work as a carer in the community, insisted on helping me find romance. He scrolled through some online profiles and stopped on Stu, saying, “Look, he likes gardening!” because he knew I loved gardening too.
I contacted Stu and we exchanged messages for a few weeks. We met in person for the first time at the tail end of the first lockdown. We hit it off straight away and went for a lovely long walk in a beauty spot near where we both live in Leicestershire, and then to the pub. Stu was so easy to be with. There was no angst or hidden agenda, or nastiness. We had such a laugh, and there was great chemistry between us. It was while he was showing me pictures of his garden that we had our first kiss.
I was then 42 and Stu, who had worked as a policeman and was now a community support officer, was 43. The relationship blossomed quickly, partly because of lockdown. There was no pressure to be sociable and go out, so we’d go for long walks, have film nights and takeaways at home, and during the day we’d work on our gardens together. Stu made me feel safe and I know he adored me.
After about a year, Stu moved in with me. We’d started the process of selling our houses and had found a new place with a huge garden that we wanted to buy together. I’d met Stu’s lovely family, his mum and dad and his brother and his kids. We’d all been on holiday together and Stu and I also had a wonderful holiday in Cadiz, Spain.
Life was good, and then in April 2022, as we were making plans for our new home, Stu started to suffer from back and abdominal pain. There was no obvious reason for the pain and we thought it might be muscle strain from lifting weights. We tried massages and hot water bottles and Stu went back and forth to the GP and was prescribed various painkillers. He was in constant pain but kept getting fobbed off.
Eventually, after many appointments, he was referred for a CAT scan in early June; the results came back three weeks later, showing that Stu had an “atrophied” pancreas, which meant it was smaller than usual.
The GP said this was nothing to worry about, but referred him for an MRI scan, for further investigation.
At the same time, Stu was beginning to lose a lot of weight. He had always been quite conscious of his physique and he worked out to be a bit bulkier. But by the summer of 2022, he’d somehow lost a stone. He was diagnosed with Type 2 diabetes, even though he was fit and healthy and didn’t fit the profile at all. He was given the diabetes drug metformin, and then injectable insulin, but he continued to lose weight.
Later on, I discovered he had Type 3c diabetes, which is related to pancreas damage, but at the time no one considered that or linked his diabetes, back pain, abdominal pain and weight loss. They couldn’t see the bigger picture. If he’d been older, a GP would have probably red-flagged Stu and he would have been put on a two-week pathway for pancreatic cancer, where you see a doctor and get further testing within two weeks. But because he was a young, fit man, and most people don’t get pancreatic cancer at his age, the seriousness of his situation was completely overlooked.
Meanwhile, it was taking absolutely ages to get the MRI scan. We kept calling the GP, chasing and chasing. In the end, Stu gave up asking his GP and went directly to the hospital and it was sheer luck that they gave him an appointment at the end of September. By this point, we had waited four months.
We then found out there was going to be a three-week wait to see a doctor for the results, so we ended up going private to see a specialist more quickly.
On the day of the appointment, the private doctor had the report from Stu’s scan, and even though he didn’t see the images himself, he knew immediately that it was pancreatic cancer. He talked about metastasis in the liver and the tumour being wrapped around the artery. I couldn’t believe it. We had gone from getting massages for back pain and making cakes with less sugar for diabetes… to cancer. Stu was positive about the prognosis though – he could put an optimistic spin on anything.
Because we’d gone private Stu was fast-tracked for more scans and a biopsy. Finally, we were referred back to the NHS to see the same consultant we had seen privately. In a busy hospital corridor, he gave us the news that Stu’s pancreatic cancer was stage 4.
As I tried to concentrate on what the doctor was saying, nurses behind us were joking about their favourite chocolate, and an old lady was being pushed by a porter as he tried to squeeze past us. As I heard his words I felt like the ground had fallen away from me. I don’t remember much, but I do remember asking, “He can have chemo though, can’t he?” The doctor said the tumour would never be operable. “But the chemo can shrink it, can’t it?” I asked. I don’t think he completely clarified that. It was horrific.
I was in absolute bits as we drove home from the hospital. There was no confusion anymore as to what this was; we’d effectively been told the cancer was terminal although they never used that word. A Bruce Springsteen song came on the radio and for seven minutes Stu sang along at the top of his voice, all the way home. I think it was because he’d had cancer before – testicular cancer – and beaten it, that he felt that, despite everything, he could beat this again.
The doctor had told us that we would be referred to an oncologist for chemo, but back home we found ourselves waiting again, with no information, feeling very alone. We were about to complete on our new house together, but pulled out of the sale. Meanwhile, I went into overdrive searching for different treatments. I read about enzyme replacement therapy to help Stu as he was struggling to eat, and rang the support line at the charity Pancreatic Cancer UK. From that moment on, Dianne Dobson, a specialist nurse at the charity, was a total lifesaver. She told me all about the therapy, and answered not just that question but so many others. She helped me again and again.
The GP wouldn’t prescribe me the enzymes, but she found me a pharmacist who would, and he was brilliant. He helped with sleeping tablets as Stu was often awake all night, and morphine for his pain, none of which I could inexplicably get from the GP.
We were fighting with the oncology department to get the chemo started, which we finally realised was to extend life, rather than to cure Stu. After a month, the chemo was decided upon, but after advice from Dianne I checked the planned dosage and realised that it was wrong. In the end, I had to get a Harley Street consultant to write to the oncologist to challenge the treatment plan. It was yet another battle. It can be hard challenging senior doctors, especially when you’re a woman and you feel like you’re alienating them, but I had to speak out.
If Stu had been incorrectly dosed as the oncologist planned, I would have had three months less time with him. By then we had lost faith in the NHS.
By the middle of December 2022, I had been exposed to Covid so I had to spend a week apart from Stu. By the time he got home to me on Christmas Eve, he was down to 8 stone and looked gaunt, but his waist had ballooned to 38 inches. We went to A&E on Christmas Eve and then stayed all day on Christmas Day. Finally, he was admitted to hospital on December 27. He had a rare condition, where fluid builds up in the abdomen. He was too weak for surgery, so a dietitian put him on a fat-free diet and he lost a stone in a week, which was awful.
He had very low blood pressure and was frightened to walk as he got so dizzy. He was in an open ward and was never given help to shower or brush his teeth, so he got thrush in his mouth and all down his throat. He was given a bedpan to use lying down, so he had to go to the toilet with a bedpan jammed into his back. I think they were overstretched in the hospital and because Stu was young he was overlooked.
Dianne advised me to seek treatment from the hospital’s palliative care team. Yet the consultant oncologist refused as he said Stu “wasn’t in pain” and “wasn’t dying”. I couldn’t understand why they weren’t taking him more seriously. This was yet another battle we had to fight on Stu’s behalf and I got everyone involved, including the specialist I had seen on Harley Street. Thankfully the palliative care registrar stood up to the oncologist, which was very brave because he was much older than her and far more senior. She argued that this was the time for Stu to be in comfort.
When Stu was transferred to the hospice it was like heaven, it was so dignified. They were so kind and considerate. The first thing they did was wash him and ask him for his favourite-smelling soap. Everything they did was led by him. They didn’t force food if he didn’t feel like eating – he didn’t have to eat.
I had Stu’s mum and dad and brother around me and I was still in touch with Dianne over those last few days. I didn’t think it was the end, I’m not sure anybody ever does. But in the end, he was only there for four days. He had 18 visitors and was never alone. While he was weak, we had a special time together looking at the hospice garden. He died peacefully on Feb 1 2023, aged just 44.
There are no words for it, but I know I’m forever changed. There’s the grief, but also the post-traumatic stress from what I had to go through; the fighting and the anger from the colossal errors that were made. The care wasn’t joined up, there was no communication, and I felt I couldn’t trust anyone. I don’t know if Stu would still be with us if his cancer had been spotted earlier, but I like to think I would have had him for longer.
Something needs to change so those red flags can be spotted earlier in future. Care can be far more joined up and diagnosis and treatment faster, and this is why I’m supporting the Pancreatic Cancer UK campaign, Don’t Write Me Off.
Dianne was a godsend – I don’t know what I would have done without her – but I can only assume that some of the doctors and carers involved in Stu’s care had seen so much trauma that they’d forgotten that every human life is precious. Stu asked me to marry him in the hospice, and while that never happened, I know we would have been together forever.
As told to Laurel Ives
Pancreatic Cancer UK runs a dedicated support line, staffed by specialist nurses.
For more info on the Don’t Write Me Off Campaign visit this link. https://www.pancreaticcancer.org.uk/dontwritemeoff/
Six breakthroughs pushing us closer to a cure for cancer