Stefan
Stefan, a father of two, was 52 when he found out he had advanced pancreatic cancer that had spread to the liver and lymph nodes. He talks about the emotional impact of his diagnosis on himself and his family, and how his experience motivated him to help others.
On the 21st December 2021 I was diagnosed with stage four pancreatic cancer.
I was a reasonably healthy and fit man of 52, I kept active and enjoyed classic motorcycle racing. I have two children, Harriet and George, who were 13 and 10 years old at the time.
I had no idea it might be pancreatic cancer
It was unexpected and was the result of a CT scan that I had due to suffering upper abdominal pain. I was alone when I received the results of the scan. I was asked to visit the outpatients’ department of my local hospital. The consultant said there were some issues that needed to be discussed and he had referred me to a doctor at the hospital, that was all I knew.
On arrival at the hospital, Covid precautions were still in force and I joined the queue for entry. Each person in front of me had to demonstrate evidence of a negative Covid test to allow access.
I had none of that. When I told them my name I was swiftly taken inside. No Covid tests were asked for, I was taken straight in. I thought “this is a bit strange,” but still nothing alarmed me.
A nurse took me to a room where I was weighed, and had my height measured etc. All the time the nursing staff where extremely nice and I thought this is getting weird now, I even texted Helen and said “I think I’m in trouble” as my mind was beginning to run wild.
Getting the devastating news
I was eventually taken into a little office, the nurse followed me in and closed the door. I was asked why I had a CT scan, so I answered, “I thought I might have an ulcer or hernia as I was getting pain in my upper abdomen and had issues with stomach cramps and wind.”
The oncology doctor on duty then told me that I had stage 4 pancreatic cancer, it was inoperable, incurable and I would be placed on palliative care. I had no idea what that was, so I asked. Then the reality dawned. I was told I had perhaps 5–6 months to live.
The impact on my family was hard
I was devastated. I could get no mobile phone signal to contact my partner of thirty years, Helen, and had to use a phone in an unoccupied office. It was bleak, all I wanted to do was hug Helen.
Helen and I decided not to tell Harriet and George until after the Christmas of 2021. We wanted them to enjoy what could be our last Christmas together.
Telling the children was incredibly difficult and emotional, and something I hope no one has to go through. But we thought the best way was for them to know the truth and the whole truth.
Helen and I married on December 30th to ensure that, if the worst happened, the financial and legal aspect would be easier for her.
I had chemotherapy, but eventually decided to stop
I stared chemotherapy (Gemcitabine) in the February of 2022, cycles of three weekly doses and a week off. This went on until mid-August. By that time the chemo was making me more ill that the cancer was ever doing.
I suffered with severe fatigue, my feet developed peripheral neuropathy and I found it increasingly difficult to walk. I therefore took the decision to stop the chemotherapy treatment.
This was not a difficult scenario for me, but it was extremely difficult for my family to understand.
The emotional side took its toll
In September 2022 I suffered a mini mental break down. Anxiety was brought on by worrying over financials and how my family would manage when I die.
I didn’t sleep, I became very inward, I would physically shake and flinch. I wouldn’t go out or spend any money.
Helen persuaded me get help. This came in the form of medicine from my GP to settle me down and one to one counselling through my private health insurance. This helped, and I am now free of this issue thankfully. It was a terrible, dark period that I do not want to go back to again.
I had a stent fitted, and started radiotherapy
In October 2022 I was admitted to hospital to investigate what appeared to be a blockage in my digestive system. I was eventually fitted with a duodenal stent and now must strictly manage what I eat and how I eat it.
In March 2023 I undertook ten fractions of radiotherapy. This seemed to go well with no major side effects and I now await the results of the latest CT scan and blood tests to see what impact the treatment has had on the disease.
The effect of diagnosis on our life is huge
I have constant issues with increasing pain from either the disease or the digestive problems. I must vary the Creon capsules that I take with my food for every meal or snack I have. I struggle to walk any distance and have become dependent on a mobility scooter to get me about, at home or out.
Life has changed so much, but I think more so for my wife. Helen is always there, always making sure I do what I’m supposed to, but she is always there for the children too. Her attitude and conviction to us all as a family is so inspiring and motivating, it keeps me going.
We enjoy life together as a family
The constant mental battle that goes on knowing you live with a life limiting illness is sometimes overwhelming for me and my family. But we take every day as a bonus and try to enjoy it the best we can.
Since the diagnosis we have become a very tight and active unit, we spend every weekend out and about together.
I’m still actively at work, thankfully I work for an amazing company who have supported me massively from the very beginning of my cancer journey.
I wanted to do something for others
As a result of my diagnosis I started a fundraising campaign to help improve the facilities at my local hospital.
When I got told my news it was brutal, straight to the point, in a bleak room with the doctor on duty and the care nurse. I wanted to improve the how patients receive care, and in doing so, hopefully we can make the work of the carer easier as well.
So ‘bad news rooms’ have been created, which hopefully make the breaking of bad news by the nurses a little easier. People are now given the news in a comfortable and relaxed environment, with access to services so they can contact family members and friends.
We managed to raise over 24 thousand pounds from donations through JustGiving. The fund has managed to provide five of these bad news rooms, and has also provided specialist equipment to the Oncology unit.
15 months on from my diagnosis I am still here. I may be on St Peter’s list, but he has not called me up yet!
Stefan, April 2023
