Alice

I first became aware that something wasn’t right when I was on holiday in July 2023. I was on a very remote island, off the west coast of Ireland. It’s extremely isolated and beautiful and, as a family, we had spent many happy summers there. During my holiday, I felt a bit sick and had discomfort underneath my ribs which I thought it was indigestion but paracetamol didn’t seem to impact it. The day before I left the island, I decided I would try and see an emergency doctor on the mainland who said it could be pancreatitis but that further investigations were needed. Something just didn’t feel right and I needed clear answers. Once home, I called 111 and they suggested I visited A&E which I did.

Having different tests

They took blood samples, and I thought I’d be home in no time. I saw a doctor who told me all my bloods seemed fine with the exception of one. He said it could be pancreatitis or gallstones on one hand, then he paused, which left a moment for me to say what’s on the other hand? To which he said, pancreatic cancer. I averted my entire brain, all my thoughts, back to the first option. I couldn’t possibly have pancreatic cancer. That was too terrifying to contemplate.

My husband died from cancer. We had ‘done’ cancer. I have one daughter who managed to survive losing her father, my husband. I didn’t want her to lose me too.

I had an ultrasound which showed my pancreas was inflamed. The consultant thought it was pancreatitis and I was booked in for another ultrasound in 4-6 weeks. I had no further discomfort or symptoms. However, I am quite slim and did at one stage think that I had looked a little thinner…

When I went back for my second ultrasound, I was expecting things to have improved, but the pancreas remained inflamed. A CT scan was organised 2-3 weeks later. After this the consultant rang me to say they had found a worrying lump on my pancreas and that I had been placed on a cancer pathway. I also had a call from the hospital’s booking team to organise an endoscopy.

I was absolutely stunned by the news

I was absolutely stunned by the news. They did try to reassure me by saying a lot of people are placed on these pathways and that I was going to be cared for by an excellent surgeon. I was shaken and extremely anxious about the unknown, what this might possibly mean for me and my daughter. The whole world felt like it was collapsing around me.

Alice and her daughter

My treatment plan

Three days later, I was calmly told by the surgeon that there was a tumour on my pancreas, and he explained how the team were going to manage it. I was told I’d be having chemotherapy straight away because there was a concern that the tumour was impacting a significant artery, and they hoped chemotherapy might pull the tumour away from it but that the end goal was surgery. Afterwards, my daughter came with me to meet the Clinical Nurse Specialist (CNS) to talk about the results. Both the surgeon and CNS were extremely calming.

We were devastated, frightened and very worried about the future that was now looking so different for us. My daughter and her boyfriend had plans to move to Australia in early 2024, (this was now October 2023) and she had moved home with me to try and save some money. She was now suddenly in a position where her life was turned upside down. I tried to reassure her that she should go, I’d still be here and that I wasn’t going anywhere… Needless to say, she didn’t go.

Four days later we met the oncologist, who outlined the drugs that I would have. It was then a long wait of another 3 weeks before I started chemotherapy. In this time, I disclosed the information to a small number of close friends and colleagues. Those messages and calls were very difficult, seeing the words and having to speak the diagnosis out loud was something that I won’t forget. I felt at times I was trying to reassure them…

Three weeks doesn’t seem like a long time, but waiting was really difficult. We were on a rollercoaster of emotions, fears, nightmares. I kept thinking about how aggressive pancreatic cancer can be and that it was growing inside of me. There was a surge of activity from the hospital, letters, calls, appointments that take over.

Starting chemotherapy

I started chemotherapy in November 2023 and was put on the highest possible strength. The chemotherapy ward was initially a very strange environment of bells and alarms. I found ways of coping with the hours spent there every 2 weeks, including learning every nurse’s name and encouraged them to use my name too. I struggled with lack of privacy in such an open environment and being asked personal questions in an open space. However, I wanted to do everything I could to get myself in that operating theatre and I would cope. I would remind myself that ‘this too shall pass.’

I had reached a place in my head of controlling the negative projection and stopping worrying about something I couldn’t control. I grew calmer and more matter of fact. I knew I had to deal with this situation as best I could for both myself and my daughter. Every night when I’d wake up, I’d repeat a mantra “this treatment is working for me, it is killing every cancer cell in my body. I will have surgery.”

I had seven cycles of chemo. I call them rounds as, you feel like you’ve in a boxing ring and at some point, it will end. I tried to keep myself fit during this. I had been told nutrition and fitness were really important. I felt very dependent on my daughter and her partner, but I did make myself get up every day. I wanted to feel human and normal as possible in an abnormal situation. Chemotherapy can feel dehumanising in a way.

My surgery experience

I hadn’t really thought about what surgery would be like, only that I was going to have it. We read the leaflets in a matter-of-fact manner. I wasn’t really aware of what post-surgery would be like. I had thought that maybe I’d be in the gym quite soon after, but I was totally wrong about that. The Whipples operation itself went well and I was told they were successful in removing the tumour. I spent a few days in intensive care. It was quite difficult to breathe deeply and turnover in bed, but I could walk around. I continued to do this, to keep myself as fit as possible.

The evening after my surgery, I was able to see my daughter in ICU which was amazing, it was such a great moment. She would visit me every day and often arrived to see getting myself ready for the day by doing my makeup. Again this just helped me feel human when I needed it most. I was discharged a few more days later on Mother’s Day which seemed appropriate. However, 4 days later, I was readmitted with an infection. When I got home, I could just about manage to walk around the garden. I kept this up, building on the distance each time and doing the exercises the physios gave me.

More chemotherapy after my surgery

I was in a rush to get back into chemotherapy as I had made plans with my daughter, and I was not going to miss them. I started back on the strongest possible dose again. It seemed to really upset my digestive system this time and for the whole of May I had diarrhoea. My weight dropped considerably and it turned out I had an infection, C. difficile, which was making me more unwell. I had this treated and spoke with my dietitian to look at supplements to help increase my weight. I take on average 56 capsules of pancreatic enzyme replacement therapy [PERT] each day, to try and keep my weight steady. It’s difficult but we’re getting there.

I’ve had amazing support

The support I have around me from my healthcare team, my daughter and her partner, and my friends and family has been amazing. My employers were so supportive to me throughout and allowed me to work when I could.

I could see that healthcare professionals are completely overstretched in some places, yet still, staff were so caring and dedicated. The surgical and oncology teams were incredible. I managed to stay positive with help from my support network but it’s easy to let the negativity seep in. Staying positive and living in the moment is so important. All you want is a good outcome, nothing else matters. Nothing matters except living. I hope more people with pancreatic cancer get the chance to live in the future.

My future

I have had as good an outcome from surgery as I could have hoped for and there was no identified spread to my lymph nodes. I am grateful and relieved that my 6 month post-surgery CT scan was clear. I am regaining weight, back in the gym with a trainer to help rebuild my strength and have goals set for the next 6 months to a year. I have been back to the Ireland where I first started to feel unwell and made new memories during the summer of 2024 with my friends. My daughter has returned to London, and I hope they will be able to travel to Australia as originally planned and I hope to visit them there.