Ash

I became ill in January 2021, and eventually found out I have stage 4 inoperable pancreatic cancer. Anything that could go wrong with my treatment and diagnosis, has gone wrong! Test results have been lost, there’s been delays, poor communication, misdiagnosis, DVT, infection… you name it.

But that’s not the reason I want to share my story. I want to tell you I’m living my life to the full! Despite everything that has happened to me, I feel physically well. I’m out every day, seeing people and going out for meals, and doing things I’ve always wanted to do. I’m having the time of my life, and having a laugh with all the friends and colleagues I have known over the years.

So here is the story of what happened to me. Believe it or not, this is the short version!

Trying to get a diagnosis

When I first became ill, I thought I just had a bad back. I have colitis, so I am on immunosuppressants and I was working from home and shielding anyway. But I began to find it hard to sit at my desk.

I have regular blood tests because of my colitis, and my liver function results were starting to go crazy. One day my doctor called me and told me I needed to go to hospital “now!” By the time I was sent home I was black and blue from so many blood tests. They wanted to book an ultrasound scan too.

The professionals had lots of theories about what was going on, related to my colitis and possibly my liver. But cancer hadn’t been mentioned at this point.

It might be cancer

Eventually, my Gastro consultant said he wanted to do a CT scan, because the results of my tests were inconclusive. It took weeks to get a scan. When we finally got the results, I asked him what was wrong with me. He said he could be wrong, as it was not his area of expertise, but he thought he could see a shadow on my pancreas that could be cancer. So the next step was to refer me to the HPB team.

I got DVT

I still had no formal diagnosis when I got a massive blood clot. I told the nurse at the DVT clinic about the pancreatic shadow my consultant had seen, and she said that DVT was also a symptom of pancreatic cancer. I was quite upset, and she was a wonderful support.

They confirmed it was pancreatic cancer

Because of COVID, my consultation with the HPB consultant was on the phone. I had my brother with me as I didn’t want to be alone.

I asked the consultant to be blunt with me as I didn’t know what was going on. He said that they thought I had pancreatic cancer. He said there were at least two masses, and maybe a third, and that they thought it had already spread to my liver. The cancer was stage four and inoperable.

I asked what that meant for me, and he said my only option was palliative chemotherapy.

The whole conversation was 12 minutes. I felt I had been handed a death sentence.

I needed information and support

I rang the PCUK Support Line to ask them what it all meant. They were fantastic. Diane explained everything to me, and filled in the gaps. I’m so grateful to her. Whenever I need to understand something, I know I can call them and they will help me make sense of it.

I left it a couple of days before I began to tell people. Other people’s reactions have been hitting me more than my own. But it helped me to get my head around it before telling people more widely. My family and friends have been amazing.

Starting chemotherapy

The first biopsy failed – they didn’t manage to get any useful results. At the second biopsy they managed to get enough tissue to confirm that I had adenocarcinoma in the head of the pancreas.

At the start of July I finally saw an oncologist. She was fantastic. I had a holiday booked in, and she said I could start chemotherapy as soon as I got back. She then left the hospital and I started again with a new one!!

I had a wonderful holiday, and came back early to start the chemo. But somehow there were delays. Some weeks later, I finally had my first dose of FOLFIRINOX.

I felt okay. I had a pump on my arm, and no side-effects at first. I thought it would be easy. Then I got a serious infection and was hospitalised for a week. It was eight weeks before I could get back to the chemotherapy. They put me on Gemcitabine after this, but it turned out my platelets couldn’t handle it. I ended up having 3 to 5 weeks between doses to be able to recover. That’s still the case, but better of late.

Making the most of my life

I must be made of tough stuff, because further scans have showed that over one year since I first saw my oncologist, despite all the delays and problems, there is still no growth in my cancer. It’s incredible! Why am I doing so well? I just don’t know. I don’t think they do either. She was telling me that this is not going to last forever, and I know that. But I intend to keep going and keep seeing people while I’m fit enough to do that.

I’m known amongst my friends and colleagues for always wearing this green jacket. I’ve been going on what I call “The Green Jacket Tour,” seeing everyone and doing the things I want to do.

I had the holiday of a lifetime in Scotland before my chemotherapy. We went all round the Highlands and even got halfway up Ben Nevis! I have wanted to do that for years. I cashed in my pensions and took my sister her husband and my niece with me. We had a great time! I’ve got tickets to an air show in a few weeks, and I’m really looking forward to that. It’s just important to do the things I’ve always wanted to do.

I’ve made a plan for the end of my life with a local hospice. I don’t want my family looking after me. I haven’t visited the hospice yet, and I’ve told my Palliative Nurse to focus on those who need it more than me for now.

I’ve arranged my funeral and my wake, and sorted out all my affairs so everything will be easy for my family. I’m keeping a few surprises for people! The funeral will be lots of fun. It should make everyone laugh! That’s how I want it to be. It means I can enjoy myself without focusing on the death side of things.

I feel lucky to have had this time to live. I wanted to share my story because, yes, it has been stressful and upsetting but I feel I can’t let that stop me from living my life. If there’s anything I want people to take away from my story, it isn’t all the problems. It’s that you can live a fulfilling life after a terminal diagnosis. I don’t know how long I have, so I want to make the most of it!

I’m already defying expectations by being here almost 18 months on. I have a bit of discomfort sometimes, and I need a little support, but given what’s happened I feel pretty good. My sister helps me with the shopping and looking after the house. I take a pragmatic approach, and I know I’m lucky to have a big social network. If I want to talk about it, I can.

That’s another thing that I want to come out of my experience. I want people to talk about their health more. One of my friends discovered that she had stage 3 breast cancer from me urging her to get it checked. If she had left it longer, she could’ve died, but now she is expected to make a full recovery. People need to talk about these things.

June 2022