“It felt like my whole world just shattered in a million pieces and had come to a complete stop.”
One of our supporters, who has asked that we respect their privacy, has shared with us her mother's experiences with pancreatic cancer.
My mum was always very active and I never remember her even having a cold. I cannot remember exactly when, but as far as I remember, a few months prior to my mum becoming ill, she ate tofu for the first time. That night she was vomiting violently nad her vomit was very dark brown. This happened the second time she ate tofu and we assumed it was an intolerance, but in hindsight, I wonder if it was linked to her illness.
In August 2010, out of the blue, she complained of severe abdominal pain after eating dinner. After a few weeks of experiencing abdominal pains on and off, she also became quite constipated and attended A&E in September because the pain was so severe. My mum was never one to complain and would have had a high pain threshold, so the pain was certainly severe for her to go to hospital. She was also at times feeling bloated and felt full more quickly when eating and nauseated.
An x-ray showed some constipation, her bloods showed her inflammatory markers were elevated, and the medical staff were not sure of the reason for this. They said her symptoms and raised inflammatory markers didn’t fit into a particular box or fit with anything specific. She was referred for an OGD and flexible sigmoidoscopy, however, these tests were not completed until January 2011.
Between October and November of 2010, her symptoms seemed to go away, she had started taking barley greens powder, which is alkaline, at this time and they had seemed to help. We didn’t think the symptoms would have completely gone if there was something sinister going on. However, at the end of November on her 60th birthday, she began to feel unwell again.
Camera tests were done and these were clear, so the GI consultant arranged an ultrasound of her abdomen. This did not happen until the start of March. Between January and March, the pain got worse and worse, my mum never took painkillers, but she had to start taking co-codamol to get just some relief. The pain was in her upper abdomen and radiated around her left side and into her back, around where her bra strap would be. She felt full very quickly when eating and was losing weight. She was becoming increasingly fatigued but again was never one to complain and she continued to care for her elderly parents and her six-month-old grandson, who she absolutely adored. She had four daughters and to have a grandson made her so happy: She was just so delighted to be a granny.
At the start of March 2011, she had an ultrasound scan of her abdomen. A few days after the ultrasound she had a letter to attend for a CT scan the following week. Within eight days of the ultrasound scan, my mum was jaundiced, and the pain and nausea were awful. She was also struggling with constipation. The day before she was to have the CT scan we contacted the GI consultant’s secretary to say we were very worried that my mum had become so unwell very quickly and was very jaundiced.
My mum ended up being admitted directly into hospital that night. I was on night duty as a newly qualified nurse and I remember not being able to settle at all. I had never even heard of pancreatic cancer before, so had not even considered that was what it could be. I thought she maybe had gallstones.
The next day my mum had her scan. Later that afternoon the consultant came in to explain the results. I was there with my mum, dad and one of my sisters. I knew when the doctor offered to get us chairs that it must be bad news. He explained that my mum had pancreatic cancer which had spread to her liver. Surgery was not an option because it had spread, and even if it hadn’t, the tumour in her pancreas was wrapped around major blood vessels.
He said chemotherapy may be an option but it would only be to help with her symptoms. However, chemotherapy would make her feel more fatigued.
My mum was so incredibly amazing, she had such a strong faith and stayed so calm throughout it all. I will never forget the devastating feeling when the doctor told us the news. It felt like my whole world just shattered in a million pieces and had come to a complete stop.
My mum spent two weeks in hospital. She had a stent put in to relieve the jaundice and help with some of her symptoms. The palliative care team in the hospital were amazing and they helped to try and get her symptoms better before going home. She got home the day before my dad’s birthday, but birthdays didn’t seem to matter anymore. She decided not to have chemotherapy. She felt so tired already she said she could not face feeling more tired. Mum’s energy levels were awful; she spent most of the day sitting or lying down.
She began to have pain in her calves. I was worried she might have a DVT, but the oncology doctor said it wasn’t and wouldn’t do a scan to check. My mum got five weeks at home. I had noticed her abdomen and it appeared to me with my limited experience that she had abdominal ascites. We managed to get the GP out but he said it wasn’t ascites and gave her iron tablets as he thought she was anaemic, but he hadn’t even checked her bloods. The night she went back to hospital she had to crawl up the stairs to bed; she was so exhausted and felt so ill. Her abdomen was very swollen and we got the OOH GP out, who advised taking her to hospital as he said there was fluid in her abdomen.
We took mum to ED and waited four hours to get her to a ward. Two days later, my mum had eight litres of fluid drained off her abdomen. Unfortunately, she had a fall and dropped her oxygen levels overnight, so had an urgent CT scan which showed a massive PE and multiple smaller clots in her lungs. She also had her legs scanned and this showed DVTs in both her legs.
I felt so angry because I thought she most likely had a DVT when she complained of calf pain and we were not listened to. If she had just had a scan at that time, it could have saved her from going through so much when the clots travelled to her lungs. The next day we found out my mum’s blood sugars were so high.
My mum was in hospital for three weeks and had fluid drained from her abdomen several times. We were planning to take her home as there had been a slight improvement and the medical team felt there was a window of opportunity to get her home as this was what mum happened.
It happened to be a Friday and we decided to wait until Monday to go home to make sure everything was in place rather than something possibly go wrong over the weekend and there would be limited help at home. So the plan was to go home on Monday. Unfortunately, mum deteriorated very quickly over the weekend. The last she spoke to us was on Saturday night. She went to sleep and was unconscious the next morning. Mum sadly passed away just 10 weeks after her diagnosis.
Pancreatic cancer is such a cruel disease. I feel me, my family and my mum have all been robbed of her life. My mum and dad planned to retire at 60 and enjoy time together but cancer destroyed that as she was taken sick the year they were retiring. She has missed out on so much and we have missed out on having her. We haven’t even got our heads around mum’s diagnosis when she died. My mum was always a warrior throughout her illness. She was incredibly calm and had an amazing peace. Her faith in Jesus carried her through, she knew she was ready for heaven and was not fearful of dying which is such a comfort.
I now work in palliative care and decided that although this experience has been a defining moment in my life, I want to use it for good and to help make such a difficult time for others even just a little bit easier.
I wouldn’t wish this experience on anyone. I believe GPs and doctors in A&E need to have a greater awareness of the signs and symptoms of pancreatic cancer. Maybe pancreatic cancer and other aggressive cancers should be talked about more in medical and nursing undergraduate training. I also believe there needs to be better public awareness, and Pancreatic Cancer Action is helping to improve this, so thank you for all you’re doing!