Carl

Myself and my partner, Fran, met in 2013, she has 2 girls and I have a son. Once our kids grew up, fled the nest and were settled, we sold our property in Essex and moved to Wiltshire in July 2023. We love going to car boot sales, antique fairs and I’m also a keen photographer, especially wildlife.

Fran noticed my eyes were yellow

As part of my 60^th birthday Fran bought me a puppy, an Airedale Terrier who I called Penny. On 1st September 2024, we took Penny to a dog show in Bristol as part of socialising her with other dogs. We got there early so we sat down for a bacon roll and a coffee like you do and that is when Fran noticed my eyes were really yellow. I hadn’t been feeling ill at all and because I had been working outside a lot through the summer at our new house, I hadn’t noticed how yellow I was. I thought for once I had a decent tan, unfortunately it was just masking the jaundice.

We knew that wasn’t good and spoke to NHS 111. They said see my GP as soon as possible. The following morning, I saw my GP and she put me on the fast-track route to get an ultrasound scan and she along with me and Fran suspected something bad.

I hadn’t heard from the fast-track service and so a couple of days later I contacted them. Unfortunately, they were not making appointments as they had a backlog. I asked how long the backlog was and they could not tell me. I relayed this information to my GP who thankfully managed to circumvent the fast-track system and get me in for an ultrasound the following Monday, 9 September 2024.

Carl and partner, Fran

I had an adenocarcinoma on the head of the pancreas

At the ultrasound, the lady found the problem straight away on the head of my pancreas, she took me round to the CT scanner and they scanned me straight away, no waiting, it was there and then.

The following week, I saw a consultant who confirmed I had an adenocarcinoma of the pancreas. It was on the head of the pancreas and blocking my bile duct. I was borderline surgical as it was encroaching the super mesenteric vein.

Three days later, I had a stent fitted to relieve the blockage and let the bile drain. I needed this to gain back some liver function and to start reducing my bilirubin levels as they were too high to start chemotherapy. Unfortunately, they did have problems during this procedure, ultimately having to fit a metal stent instead of plastic, and I ended up having to stay in overnight.

On 11 October 2024, I had a PET scan which confirmed the cancer was localised and had not spread.

Starting chemotherapy

A couple of weeks later, I started the FOLFIRINOX course of chemotherapy. My bilirubin levels had come down a lot, and the jaundice was subsiding however it wasn’t quite low enough for the chemotherapy to be given at the usual dose, so I was started at 80% dose.

Subsequent chemotherapy was done at 100%, until into 2025 when it was reduced back down to 80% due to extreme fatigue and weight loss and it stayed at 80% for the remaining chemotherapy sessions. I had my last chemotherapy on 27 March 2025.

My side effects from chemotherapy

During chemotherapy not once did I ever feel nauseous or sick however I did suffer with a range of bowel problems ranging from mild constipation with quite painful cramps all the way down to full blown, bad as it gets diarrhoea.

I lost over five and a half stone during chemotherapy, weighing about 9 stone when I had my surgery.

This was due to several factors, the main one being, I lost all sense of taste. Nothing tasted right, meat tasted like cardboard, everything else like pasta, chips, etc was bland and after a couple of mouthfuls I would start gagging and couldn’t eat anymore. Fran would have to throw it away and try cooking something else just to get something decent inside me. Drinking wise everything tasted foul and even water tasted very metallic. The one thing I could always eat for some strange reason was tomato and basil soup!

Another contributing factor was my decision to carry on working for as long as I could. But this didn’t help as I got to the point where I was burning more calories than I was actually taking in each day as I had a relatively physically demanding job.

Because of the fatigue and all the weight and muscle loss it’s important not to do anything strenuous. On one of my better days, I had decided to lift a couple of things in the garden, they weren’t even what you would normally consider as heavy and this caused an inguinal hernia in my groin. There wasn’t enough muscle mass left to hold everything inside in place.

I was also admitted to hospital for a DVT in my upper arm. I woke in the morning to find my arm very swollen and going a bluey, purple colour.

The chemotherapy also caused peripheral neuropathy, which for me feels like mild numbness in my hands and feet. I still have it now; it has not got any worse or any better since finishing chemotherapy.

After each chemotherapy session, which could last anything from about 6 hours to 10 hours in hospital, my treatment required me to be sent home with a pump fitted. This was attached to the PICC line and remained on for a further 2 days. It’s hard to sleep with this attached as you are constantly in fear of pulling the tube out and as it’s toxic, they give a chemical spillage kit just in case you do.

Chemo fog is a real thing

There’s a lot to do with the chemotherapy regime at home, tablets to take at different times, stomach injections and supplements to take. Chemo fog is a real thing and your memory can be affected. If it hadn’t been for Fran, I would have missed loads of meds and injections and that would have affected my treatment. She made sure I had everything at the right time and helped to administer injections.

The financial implications

When I stopped working at Christmas, there was a financial hit as I wasn’t on a full wage, and this impacted on our savings. I would urge everyone who is struggling or worrying financially to seek advice regarding financial support or benefits that you might be entitled to. All the information you are given upon diagnosis is a lot to take in and it’s easy to overlook something, several months passed us by before one the community nurses told us to enquire about financial support.

I recovered well from the Whipple’s surgery

On Monday 28 April 2025, I had a full Whipple surgery. They removed the stent, my gallbladder, duodenum and the bad bit of the pancreas.

After the operation, I woke to find a scar from the Whipple surgery straight across my stomach and because it is a frontal surgery it goes in straight through your all your abdominal muscles.  Even when fully healed, I have found it very difficult to regain my core strength. I also woke to several drains coming out of my stomach, I also had a catheter fitted, and a tube up my nose. I was also hooked up to some morphine and at the press of a button I could self-administer some pain relief when needed.

After surgery they like to get you up and about as soon as possible to get you moving again and they monitor your passing of urine, but the most important thing is gaining bowel movement after surgery.

Yes, it’s painful, you can’t get comfortable with all the tubes, the scar is healing and is uncomfortable as well, but it was nowhere near as bad as I thought it would be, but that’s just my experience. I know Fran did find it very stressful driving me home from hospital, as each pothole caused me considerable pain!

Mobility was an issue

After surgery I wasn’t allowed to lift anything heavier than a 1 litre jug of water and couldn’t drive for at least 6 weeks to allow my stomach to heal. Although I recovered well after surgery – I was home after just 6 days – mobility was an issue. I was still fatigued from chemotherapy and after the surgery was not very mobile. It does take time to regain weight and build up fitness. We bought a cheap mobility scooter, and to be honest it was a godsend. It enabled me to get out more and for us to get away for a few days in Devon. Although you need to gradually increase your fitness and regain weight by eating properly and walking, it helped stop me from overdoing things and tiring myself out.

My 12 month scan showed a mass

My 6-month CT scan was good; it showed no cancer and the blood test results were also good.

However, my 12-month scan showed a mass on the tail of my pancreas this time. I have had no symptoms at all as far as I am aware, it just showed up on the scan.

Things are moving quite quickly, I’ve had a PET scan and it shows that fortunately the cancer is still localised and has not spread, however it is slightly larger than they thought at 32mm not 22mm. Originally my oncologist indicated that treatment would consist of either radiotherapy, chemotherapy or a combination of both.

However the hospital team, after reviewing the scan, consider me operable – which is great news! I’ve met with the surgical team, and have a pre-op assessment on 18 June 2026. I have a provisional date for surgery on 20 June subject to a surgical assessment, to perform a distal pancreatectomy where they will remove my remaining pancreas and spleen.

This will make me diabetic and the loss of the spleen will also make me immuno-compromised. I will need several vaccinations for meningitis and the like and will need to take a prolonged course of antibiotics.

Surgery will be through my existing scar and abdominal muscles again and afterwards it’s going to be a slow recovery to regain any sort of core strength and fitness, thankfully we still have the mobility scooter.

I’m staying positive

I’m staying positive and will follow and do whatever the experts say as they’re a great team and I cannot fault any part of the healthcare I have received so far, everyone involved in my care have been amazing!

June 2026