Steve C

Steve, 60, found out he had stage 2 pancreatic cancer by chance in 2023. He reflects on the care and support he has had, the symptoms and side effects of treatment, and the emotional impact on him and his family.

Steve

I had no symptoms of cancer

In January 2023 I was in Thailand on business and visited a doctor who I have worked with for many years (he performs medicals for our business). He persuaded me to take a blood test that he was offering to his patients as a wellness check.

I left Thailand and headed home to London. I received an email telling me to see my doctor urgently on my return. My doctor had the same results, that indicated a liver or pancreas problem.

The diagnosis was a huge shock

My GP referred me into the NHS and, as I was lucky enough to also have private medical insurance, I started the process to find a gastroenterologist, who facilitated a PET scan. This confirmed a 4cm tumour on the head of my pancreas, Stage 2 cancer. I emailed several oncologists and one of them met with me the same day. He explained the challenges ahead and the need for swift action.

There were so many emotions. The shock and also the stomach wrenching feeling of thinking that you may only have months left to live. The feeling of loss that you might not see your children graduate, marry or you might not see grandchildren born. And then the thought ‘how do we tell our children and family?’ and trying to remain positive for them, promising to survive, whilst also being terrified that you will break that promise.

We decided on a treatment plan

I contacted the NHS team to explain I was going to go privately. My oncologist referred me to a leading surgeon who assessed me and my scans. He explained the Whipple operation and the fact that the tumour needed to be shrunk with chemotherapy to enable surgery. He and his team monitored me and met with me on a regular basis throughout the whole journey.

I had chemotherapy before surgery

I had to have a couple of endoscopy procedures to take a sample of the tumour and have a stent put in my bile duct; this was performed by another amazing doctor. I started my FOLFIRINOX chemotherapy on the 22nd of March (amazing nurses again), I had six sessions every two weeks, and it shrunk the tumour.

At this point I still had no symptoms of pancreatic cancer. I had a port put in my chest which was one of the best decisions as it made chemo and blood tests and scans so easy.

I tried to normalise something which quite honestly isn’t normal, by watching daytime TV, reading or sleeping. I certainly didn’t want to eat. I was given three different drugs, the first two took around six hours to administer and then I went home with a pump attached for a further 48 hours.

I did have severe chest pains early in the process and spent a very uncomfortable 12 hours in A&E overnight. Thankfully it turned out it was just a side effect and not the heart attack I feared, but it’s the unknown that was scary.

The other side effect from the first chemotherapy was a loss of taste and strange texture of food as my saliva dried up. Along with this I also had some loss of sensation in my fingers and toes and both feet felt like they had ice blocks on them at night.

The steroids that I was given made it difficult to sleep for the first 48 hours after the start of the chemo, so I was up all night and then crashed to recover. Then I’d have five days before the next blood test and next round of chemo, and we’d do it all over again. Chemo on the Wednesday, pump out on the Friday afternoon, which meant no socialising or time out with my wife and friends over the weekends.

Having the Whipple’s operation

I did have a couple of hiccups as the operation approached. I was feeling dreadful one day and my wife rushed me to the hospital at 8pm. A blood test revealed a major infection caused by a problem with the stent. I had an unexpected five-night stay to deal with the infection, which meant that the day of the planned operation had to be delayed as my anaesthetist was not happy with my bloods. So it was put back a week to be safe.

I had the Whipple’s operation on the 12th of July 2023, it took nine hours under general anaesthetic (which is huge) and then I was in intensive care for two days. I remained in hospital for a further nine days, then I was sent home to recuperate. I was in some pain in the hospital, with little or no appetite for the first week home.

The surgery went well, and everything healed quickly apart from the main scar, which needed almost two months to heal. I had to have the dressing changed every day, but the pain went down quickly – in fact they took me off pain relief after three or four days.

They successfully removed the tumour but there were some cells in two lymph nodes and on the margins.

Chemotherapy after surgery

My follow up chemo couldn’t commence until the wound had healed. This was again six more sessions every two weeks.

The side effects of the chemo were different this time. I didn’t have the same problems with taste or saliva, I did however still have the numbness in my fingers and feet and again the feeling of ice cubes on my feet at night. The doctors gave me an additional injection to help with the very painful stomach cramps which still occurred, but these subsided once the chemotherapy had concluded.

I then had a CT scan and my oncologist called me the next day to tell me that the scan results were that I had no traces of cancer.

The impact of pancreatic cancer was huge, but I am grateful for all the support

I will have another scan in March 2024. There are of course the physical symptoms of infections, wounds, lack of sleep and poor appetite, but do not underestimate the fear of the unknown, this had a big impact on me too. But this has brought my family together, given my three children a real closeness to one another and has taught us to be grateful for each day we are given.

With the help from my dietitian I have managed (after a couple of months) to master the use of the Creon tablets which replace the enzymes which are needed to absorb the nutrients in my food. I started out as 117kg and am now at 88kg, so I do look different.

I had some ups and downs on my journey, but I am very much alive (age 60). I never googled what I had, I just dealt with it day by day. I wanted to let you know I am where I am. I know I am lucky to have found the cancer by chance whilst it was still in the early stages, but others can survive and get better too. I have been lucky to have had my wife Fiona with me every step of the way, as well as my three children, friends and acquaintances. My wife is running for Pancreatic Cancer UK to raise funds in the next London marathon.

There were of course many emotional moments and it felt like I was engaging with a medical professional every day during 2023. But I can’t speak highly enough of every person that helped me on this journey, the surgeons, oncologist, anaesthetist, doctors, nurses, secretaries and receptionists.

Steve 
January 2024

Update March 2024

I had my three month scan on 1st March and it is still showing as clear. I have my next one in June and whilst it is great news, as my oncologist said when he called, it is still early days. But the progress is positive.

I will be coming to support my wife running the London Marathon in April. It may well be her last marathon following knee surgery last year, but she is as always training hard. I have already bought the Pancreatic Cancer UK t-shirts and my daughter will be joining me to cheer her on.

Steve
March 2024