Steve Kelly shares his pancreatic cancer survivor story. A broken rib that refused to heal eventually led to him being diagnosed with pancreatic cancer in October 2018. He’s now determined to raise awareness and is supporting our Demand Survival Now campaign.
"Before being told I had pancreatic cancer I didn't really know where the pancreas was or what it did to be honest. I went to a sports day with work around August last year, and I slipped and fell and broke a rib. I was in agony but with a broken rib there's not an awful lot you can do apart from just let it heal. But it wasn't, it was nagging at me for good few weeks. So I went to the doctors and told them what had happened. They did some blood tests, which came back a little bit abnormal. We went through the lifestyle questions in terms of alcohol consumption and things like that. I've always had a pretty good diet but my alcohol consumption, probably to do with my job, was probably higher than it should've been. So I cut back on the alcohol for three or four weeks and they repeated the blood tests which were a little bit better.
Then we did the blood tests again in September and this time they were through the roof. By this point I had started coming home from work in the afternoon and going to bed....some of my mates would tell you I have done that for years!, but I can assure you, this was far from normal!
I was so fatigued, so tired. I'm a big foodie, I love my food, and I was struggling to eat a little bit, especially in the evening and then I started losing a bit of weight. On top of this, I started to develop some severe itching between my toes, which became quite chronic, especially at night. Then, this chronic itching started to develop all over my body - at times it was unbearable. When I say all over my body, I literally mean, all over, it was horrendous and would keep me awake for most of the night. I hardly slept for weeks, leading up to my diagnosis and subsequent initial treatment. So I'd become a little bit concerned and by the end of September I then started to get jaundice as well, in my hands, face and eyes, I also at one stage had this huge chronic pain in my stomach.
On the 6th of October last year, I was at work when there was a phone call from the doctor. He said we need you in the hospital straight away. I was terrified. I said: "I've got cancer, haven't I?" He said, “I don't know, I can't tell from these results. You need to go and get them checked out.” I was admitted to the Whiston Hospital in Liverpool and was probably seen by about seven doctors and consultants and every one of them said, they weren’t looking for cancer. They thought at first it could be Gall Stones.
I was slightly relieved by that point. They let me go home on a Saturday and I had to go back in on the Monday for an Ultrasound scan on my stomach. They said there were no major problems but there was something slightly amiss, that needed another look. They said we want to send you for an MRI scan. They did the scan and the following day they called me into an office where they broke the news to me. They said there was a lump and unfortunately it’s in the head of your pancreas and we think it could be a tumour. The shock was immeasurable as you can imagine! That night was the longest night of my life.
I obviously had to break the news to family and friends; a lot of tears, a lot of worry, and the natural thing is to think was how long have I got? Luckily enough I found out the next day that it hadn't spread. It was just in the pancreas. It looked like they had caught it early. Then there was all the stress that goes with finding out what stage it's at and the aggressiveness of the tumour. I finally got diagnosed at the end of October, given the full news of what the issue was and a plan of action. I was surprisingly slightly relieved by this stage, as I finally knew what was wrong.
I was given a date for my Whipple operation - the 27th of November. I met all the team at The Royal Liverpool who were to become such a huge part of my immediate future and they talked me through what the Whipple Operation involved, whilst it seemed a fairly straightforward operation to them, it’s very difficult to prepare yourself physically and mentally for what was about to happen to me, no matter what people said.
I had an awful time post-surgery, just awful. My expected stay in The Royal Liverpool was around 10 to 11 days…I was actually in for around nine weeks. The day after my operation I had an internal bleed so I was rushed back down for another operation - another two hours. My Whipple took around nine hours the previous day! I was OK for a few days. Then I had another bleed. I could hardly eat, hardly walk, I lost about three and a half stone. I went from 11.5 stone to around 8.5 stone. Not the look I was hoping for!
Then on December the 10th, which ironically is my birthday, major problems! Some of the family and friends came to visit me for my birthday, however, at around 6pm that day just as I was about to have tea with my cousin at my bedside, bang - I had a massive internal bleed. I didn't realise at the time how bad it was but I was basically 10 minutes away from not making it. My veins had packed in, my blood pressure fell through the floor, I was in absolute agony and rushed down to emergency theatre for another op, this time though, it was a lifesaver.
About the middle of January I started to see an improvement. I had been moved to the adjacent ward, the staff in both wards were amazing, became more like friends, almost family at times, they were fantastic, every single one of them. One of the surgeons, who I can only describe as a genius, had been monitoring me on a daily basis, the surgical team all worked so closely together, they knew every single last detail. They said, "Ste you're doing really, we'll let you go home tomorrow for a day at home, see how you go." Amazing. I was so, so happy, things were finally starting to look up.
However, the night before I was due to have this day at home I had yet another huge bleed. Unbelievably, It was equally as bad as the one on my birthday and I had another two-and-a-half-hour operation to stop that, which I was awake for throughout, a really, really uncomfortable few hours. So I was stuck in for another few weeks. I eventually got out about the end of January. My stomach had started to work again, the plumbing was kicking in.
After leaving hospital, I then had to have six months of chemotherapy. That was almost as tough as the operation. Anyone who's gone through chemo, I take my hat off to them. It was exhausting, but I was lucky, fatigue seemed to be my only side effect - no sickness, diarrhoea, metallic tastes, itching that can come with some chemo - so I did get through it, eventually.
I went back to work in March just three months after my initial operation, my work were very, very supportive right from the first day all of this started, and still are. However, looking back I feel I went back far too early, but in a strange way I think it helped me; I was occupied again, I wanted to get back to “normal” as quickly as I could. I bought a little puppy dog, I've, been walking the legs off him. That has helped me so much. I started going back to the match, I’m a huge Liverpool Fan, so things on that front have helped too. I even went to a concert with my best mate, the day after the Champions League Final and halfway through Chemo! Madness? Maybe. Was I doing too much as so many people told me I was, but I felt good and I knew that all these things were helping me.
I feel very, very lucky and I feel very, very blessed, too. Someone “upstairs” was looking down on me and saying it's not your time yet Ste! Maybe if I hadn't fallen over and broken my rib I probably wouldn't have gone to the doctors as early as I did and because it was diagnosed early I was able to have The Whipple. As bad as that Whipple operation is, the alternative is even worse. It saved my life.
My family and friends were massively important, and my best mates, wow… everyone says they have the best family and mates in the world, let me tell you, collectively, I have! My immediate family from Australia all flew in. My Dad, my step mum, both my brothers came over. My youngest Brother left his wife and one year old baby, missing his first Christmas with him and stayed with me for a month, from a couple of days post-op, which was amazing. He saw me at my very worst, I will never forget the sacrifice he made for me and I’m honestly not sure I would have got through all of this without these people around me.
I see a little bit more about pancreatic cancer now because of what happened to me. However, I still don't think there's enough compared to others out there. It should be given equal billing. Sometimes it's left to certain individuals, people, celebrities to try and do this or, dare I say it, just normal people and Pancreatic Cancer UK and other charities to do this, and I think it's unfair that they have to try and do this on their own.
I have signed up to become a volunteer at The Royal Liverpool Hospital with a program run by amazing pancreatic specialist nurse. If I can help even one just person in some small way, I will feel I have given something back to the establishment that helped me so much these past twelve months."