Sue & Beryl

My mum Beryl was diagnosed with pancreatic cancer in February 2018, when she was 72 years old. It all started about 6 years before this, when she had an attack of pancreatitis.

Symptoms

Mum was in hospital for a few days when she was diagnosed with pancreatitis. They helped her with the pain and other symptoms, but once she was sent home that was the end of it. She never had any follow-ups, even though her blood count hadn’t returned to normal.

Over the 6 years leading up to her eventual diagnosis, Mum went back to her GP more and more frequently. She had pain here and there and suffered dreadfully with her stomach. Mum didn’t like going to the doctors, so for her to go so often I knew something wasn’t right.

Towards the end of 2017, the ketones in her urine went through the roof, and she was diagnosed with diabetes – but she didn’t have any other tests done.

I noticed that her appetite was going and she wasn’t eating much. I could see she was losing weight and she said she felt tired a lot of the time.

Diagnosis

At the end of January 2018, my brother called me at around 7.30 at night to say they were rushing Mum to A&E. She had gone yellow with jaundice. I’d spoken to Mum that morning and she felt fine, so it came on really quickly within the day.

The hospital said it was a build-up of bile and they needed to put a stent in. They tried to do this later the following week, but the stent fell back out and nicked her bowel as they were trying to fix it. This led to some issues and Mum had to be fed through a tube for a while.

The stent had failed, so Mum was transferred to a specialist hospital for another procedure to drain the bile through a bag on her side. She was in the specialist hospital for 3 weeks.

It was when she went back to her local hospital that she was told she had pancreatic cancer. They told her it was too late for surgery, but they would try chemotherapy to prolong her life. They told her when we weren’t there with her. It was a shock – until this point we had no idea it could be cancer.

Caring for Mum

Mum never had the chemotherapy, she became too weak too quickly and the tumour spread to her stomach.

One day, the consultant came to speak to us about Mum needing surgery. She had been vomiting a lot, and they needed to do something to stop this so she could eat and drink again. They removed some of the tumour that was in her stomach – but she was never the same again after this surgery, she steadily went downhill.

I live 25 miles away from my parents, but I travelled there and back every day for 4 months to care for Mum. We lost Mum in November 2018, 10 months after her diagnosis.

Towards the end, Mum really struggled to eat. She had dropped from a size 22 to a size 8. She was given Creon so she could get the necessary bits from her food, but she just couldn’t do it. They gave her the Creon too late; by the time she was given it she was struggling to eat and swallow. We saw a dietitian a few times, but I don’t think they were specialised in pancreatic cancer, so we didn’t get all the advice we needed about how to help her take the Creon.

3 weeks before she died, Mum had a seizure at home. The tumour had spread to her brain and she was paralysed down her left side. Her food needed to be made thicker as she couldn’t use the left side of her face and mouth. At this point I fed her yoghurts with the Creon capsule opened and sprinkled on top. This was about as much as Mum could manage.

The last few weeks

Mum was on a general ward in the hospital, so her palliative care needs weren’t catered for as well as they could have been. We tried to get her into a hospice and onto the Macmillan unit, but there were no beds in either.

We cared for Mum at home as much as we could, but she needed round the clock care and we couldn’t do this on our own. With the help of a wonderful lady at the hospital, we managed to get Mum into a nursing home for her last couple of weeks. The nursing home were amazing and did all they could to help her, and to help her eat.

For the last week of her life, she didn’t really know what was going on. The tumour in her brain meant she lost her sight, and after that she stopped communicating and slept most of the time.

Coping with our loss

I’d sat with Mum every day for 4 months. It was hard to watch, but there was nowhere else I wanted to be.

I do struggle to get beyond what I saw, and to remember my Mum as she was before the cancer. There hasn’t really been much support for our family. Macmillan were wonderful for Mum, but since she died it’s been hard. Thankfully my GP has been amazing and very supportive.

I still believe that if Mum had further tests after she was diagnosed with diabetes, then her pancreatic cancer may have been found earlier. We may have been able to start some chemotherapy and have a little bit more time with her than we had.

My daughter found out about Pancreatic Cancer UK in November 2018. She dyed her hair purple on the ends as part of Pancreatic Cancer Awareness Month. Mum died at the end of November, so she actually had purple hair at her funeral.

To anyone affected by pancreatic cancer right now, I would say cherish every moment. And fight. Fight for what you believe is the right thing. When mum was first diagnosed we didn’t know about pancreatic cancer, and it was only as the months went on that we realised quite how cruel this disease could be. It was quite isolating, and I still feel isolated now. It’s really important to talk to people who understand the disease and what you’re going through.

If sharing my Mum’s story can help just one person or one family, then I know she would have been pleased about that.

July 2019