Trevor

I was diagnosed with pancreatic cancer in July/August 2014. I had been living in Kenya for 10 years and came back to the UK in May 2014 and had no family in the UK at that time. I collapsed in the street and was rushed into my local hospital by ambulance. In A&E a doctor examined me and said it was likely that I had gallstones. I was given a scan which showed that I had gallstones and also a shadow on my pancreas.

Getting diagnosed and preparing for treatment

A few weeks later, I received a phone call from a specialist centre in London and was requested to visit that hospital the following morning.

At the appointment, the consultant and his assistant explained to me that I had pancreatic cancer and that it was possible to have a Whipple’s operation to remove the cancerous tissue. He explained the risks of having the operation and also not having the operation. I quickly considered the options, and decided that I had no choice but to have the operation. The consultant told me that he already had a date booked for the 5th October 2014.

Even though I only had about 5 weeks till the operation I tried to get prepared for the operation by getting as fit as I possibly could. Unfortunately on the 5th October 2014 the hospital did not have a bed for me in the High Dependency Ward so the operation was postponed until the 5th November 2014.

Treatment and recovery

The operation lasted 5 hours. I was in the High Dependency Ward for approximately 4 days and in the recovery ward for approximately 7 days. I was discharged approximately 11 days after the operation. The surgeon explained that they removed one third of my pancreas, removed the gall bladder and gallstones, plus the edge of my stomach, and that the operation had been successful. The important information was that the cancer was only grade 1 and was all removed. Prior to the operation, I had symptoms for gallstones but no symptoms for pancreatic cancer and it had been caught very early.

After recovery at home, I then went on to have approximately six months of chemotherapy and was given Gemcitabine. My doctor had told me that before and after the operation one important thing to do is to walk as much as possible and that’s what I did and have continued to do so even now.

Continuing care and being discharged

After a while I developed a cyst in the area where the operation was done and the liquid inside it became infected, so I had to have antibiotics to treat the infection and reduce the inflammation. This happened a few times. Then my consultant arranged for me to visit the specialist centre again and under a local anaesthetic a needle was inserted into the centre of my body into the cyst and the liquid was removed. The liquid was tested and was not cancerous.

In 2020 I had a hernia repair to re-enforce the trunk area where I had the operation. I have been supervised for chemotherapy and check-ups by another doctor in my local hospital.

In 2020 my doctor explained that I had then completed 5 full years since I had the Whipple’s Operation and that he wished to discharge me as I appear to be no longer at risk. Whilst he has written to my GP advising him of the 5 year term, I have agreed an arrangement that the Oncology team will still give me a blood test once a year for additional reassurance.

Life after pancreatic cancer

As a result of the operation my pancreas no longer produces enzymes so I take Creon 25000. My pancreas still seems to be working ok in other ways so I am not diabetic. Some days I do not give myself the right amount of enzymes or I eat the wrong things and have an upset stomach, but a lot of days I manage to keep my digestion stable and keep my weight fairly stable as well.

My wife eventually joined me in the UK in 2016 after immigration restrictions and our daughter was born in June 2017. This was much to the surprise of my doctor who had considered that I might have been affected by infertility or even impotence as a result of the Gemcitabine treatment. I am generally fit and well and work full time and average over 8,000 steps a day.

Instead of considering that I was unlucky to get Pancreatic Cancer, I consider that I was very lucky: lucky to have had gallstones which made the discovery of the cancer so early, lucky to have had such good treatment from the specialist and local medical teams, lucky I am married to a lovely lady and have a lovely daughter. I concentrate on being as happy as I can every day!

July 2021

Trevor shared an update on his story in September 2023.

When I wrote my story in July 2021 at the age of 71, I had been clear of pancreatic cancer for seven years. I had a blood test check in August 2021, and was diagnosed with new pancreatic cancer in the remaining two thirds of my pancreas. The tumour was graded T1, just like the first time, so again I was lucky that it was caught early.

The rest of my pancreas was removed

I had six weeks to prepare myself between the diagnosis and the operation. In October 2021 I went back to the same hospital where I was treated before and had a second operation to remove the cancer. This time, my pancreas and spleen were completely removed. I spent 11 nights recovering in the hospital.

I became a diabetic because of the operation. So far, I seem to manage the diabetes well. I have had a continuous glucose monitor and app for almost a year now. My blood glucose level is in the ideal range and for the past 90 days 81% of readings have been in the green.

Chemotherapy was harder this time

Four months after the operation, in February 2022, I started chemotherapy treatment, with gemcitabine and capecitabine (GemCap).

This was like a double dose of treatment compared to the previous chemotherapy I had in 2015. At times the side effects were tough, it felt like it was burning my skin from the inside and the skin on my hands and feet was peeling off. I was given vitamin tablets and creams for this, which helped. I finished the chemotherapy in August 2022 and was pronounced clear of cancer by September 2022 and have been testing clear since then. I am now 73 years of age.

I had a lot to overcome

Unfortunately, my marriage broke down while I was in hospital. It was a very difficult time with personal and legal matters for many months. I had to battle with these complications while recovering from the operation and having chemotherapy, making a new life for myself, and looking after my daughter who is now 6 years old. I managed to prioritise my daughter and my health as the most important things to concentrate on. The rest, while traumatic, would have take a back seat in my mind.

I stay positive and am doing well

I still keep active but gave up full time employment in January 2022. I work out in the gym. I was on the zip wire with my daughter last week! Throughout my cancer operations and treatment I have stayed as positive as I possibly could. I am convinced that positive mental attitude is very important in dealing with health issues.

Trevor
September 2023