We were in lockdown and the school was still open for vulnerable children. I was walking to and from work because I was not taking the risk of getting on the bus – it was about 5km, but I was getting fitter and losing weight. However just before we came for the October half term, I started to feel tired. I was having to sit at each bus stop on the way back because I was breathless. I had done so much walking – maybe I had overdone it.
Soon after, a child I work with said to me: “Mary, your eyes are yellow”. He was very insistent. I was also experiencing an itchiness all over at the time, but I explained it away because my granddaughter had bought one of those furniture sprays and I thought I was allergic to that. The following day, a colleague also mentioned my eyes looked yellow. That’s when I rang my doctor. At the time I said that I needed to change my reflux tablet because I was also getting bad indigestion, even if I was just drinking water and I thought that might have been the source of my problems. I mentioned the itchiness and the yellow in my eyes, and the receptionist got the doctor to call me back within 10 minutes. The doctor looked at my eyes and the palm of my hand on a video call and told me to go to the hospital right away. When I told her the time I finished work, she said “No, I want you to go now. I’m sending through the details to your hospital.”
This was right in the middle of lockdown, but I made my way to the hospital, where they took my bloods. They told me I needed to be admitted so I went home, picked up the things I needed, and I went back on the Saturday morning for my ultrasound. Until this point, my doctor and the hospital suspected it to be gallstones. However, after my ultrasound, the registrar came in to let me know they hadn’t found any signs of gallstones, but they had found a mass. They did a CT scan on Sunday morning and then at 12pm, a doctor I hadn’t yet met told me that I had pancreatic cancer. I’d never really heard of pancreatic cancer, but I was sitting on the side of the bed and the tears were hitting my hands. I hadn’t noticed they were falling. I asked him how big the mass was, and he said about the size of a peanut.
He told me if I hadn't of come to them now and left it even two weeks later, I probably wouldn't have seen Christmas.
He reassured me that they believed they had caught me on time. The diagnosis had been fast; from referral to diagnosis in just two days. He talked through the Whipple’s procedure, letting me know that was their aim but he said we had a lot of steps to go through first before we could get there. The first one was to put a stent in the bile duct. My daughter Shannon had come to see me on the Sunday and in her own words, I looked like I had been “tangoed.” They put the stents in which worked, and I had another CT scan to make sure it hadn’t spread anywhere else. Thankfully this came back clear. It wasn’t long before they came in to tell me they could do the operation. They told me they were sending me home for three days and that I should “put my house in order”.
My mum and my dad are still alive in Ireland, so I rang one of my sisters and I told her that I had pancreatic cancer. She then picked up my other two sisters and went to tell my parents. When they got there, my mum and dad knew something was wrong straight away. My mum started crying immediately.
She said that my dad, well they might as well have hit him in the stomach. He lost all the colour in him.
I had told my daughter Shannon, who lived closest to me, and my other daughter and son were told soon after. It was just complete total shock for all of us. It was made worse by COVID as I couldn’t see them all. We started using FaceTime a lot. It was horrible because I could see how much it was taking out of everybody else. It was awful to see what it was doing to them.
I went back on the morning of the 5th of November, which is when they told me the operation would be taking place. The registrar came in dressed in her scrubs and she told me we were slightly delayed because at the time, surgeons had to fight to get their operation to happen that day due to the backlog. Rebecca told me the consultant was in there now arguing the case that my operation must go ahead as soon as possible. I was very lucky this worked, and I was wheeled down at 9am.
I was on the table for about eight hours, and they rang my daughter straight away to say that I was okay. Before I went down to surgery, the registrar had said please do let us know if there is anything at all we can do for you, and I just said, the only thing I want you to do is when I wake up, is to tell me you’ve got it all. The day following my surgery, I was already out of recovery and in the ward. At about 6pm, the same registrar came to my bed, and she said: “Well, you asked me to do something, and I did tell you last night, but you were under the anaesthetic, so I wanted to tell you again. We did get it all.” I am so glad she came back because I did not remember her saying that the first time.
After the Whipple’s I couldn’t even lift my arm; I stayed with my daughter when I got out of hospital about a week later and remained there until after the new year. I couldn’t believe how weak I was after it. My medical team kept me informed throughout though and told me when I could expect to start doing things and what to avoid. The dietician was great as well. When I was in the ward, they talked me through why I had to have PERT [Pancreatic Enzyme Replacement Therapy] tablets, and they were with me every day to see what I had eaten and how I reacted. At first, the food was just going straight through me, but they worked with me, chopping, and changing what I was consuming and how many tablets I should take until we found something that worked for me.
When I got home from hospital, the dietician rang me to make sure I was okay and to give me more advice on PERT. It’s so disheartening reading about the stories of people who were diagnosed as terminal but weren’t given PERT tablets and never had any quality of life – they basically starved to death. It’s awful. Especially when it was vital to me being fit enough for chemotherapy, which I was able to start in January 2021. This was to “mop up” any cancerous cells that could be lingering. The chemo was horrible – it was easily the worst part.
After five months of gruelling chemotherapy, I was told I was cancer-free on the 5th of June 2021. They told me they were going to be checking for any signs of resurgence every three months and they reassured me again that they were at the end of the phone any time I needed them. After finding out I was cancer-free, Shannon wanted to throw me a party with the entire family, but I needed to be alone. Throughout all of this, I’d never let myself cry. I never wanted to because I wanted to keep strong. So that Friday night, I headed back, and I think I must have cried for hours.
I've never once felt alone during my experience. I know if I've got any kind of worry or something comes up, I can just pick that phone up and ask for my clinical nurse.
It’s now been two years and I’m still receiving amazing support. I had an infection whilst on holiday a few weeks ago and due to this, they’ve brought my checkups to once monthly. I’ve never once felt alone during my experience. I know if I’ve got any kind of worry or something comes up, I can just pick that phone up and ask for my clinical nurse.
I went to another hospital for tests and to pick up antibiotics after the recent infection. The difference between the treatment and the support I received there to that at my hospital was so apparent. I rang my daughter after and I said, “I can tell you now, had this been my local hospital in October 2020, I would be dead. It is as simple as that.”
I had superb care. The communication throughout my experience made it so much more positive. I never want to say I didn’t worry but if I had any worry, I just had to ask a question and it was answered truthfully. I was surrounded by people that were straightforward and helpful.
I know pancreatic cancer is called the silent killer. I know that when I do an event fundraising for Pancreatic Cancer UK, practically everybody else is doing the event in someone’s memory. So many say they lost their loved ones within three months of diagnosis – often much less. A massive issue is that all the symptoms can be explained away. I do think a red light should be flashing in healthcare professionals’ minds when a patient comes to them presenting with even just two of the symptoms. It isn’t until the yellow starts to come out that they send you for scans. In my case, due to where the blockage was, the jaundice came out early. My doctor said this was my saving grace, but I think my saving grace was getting the right doctor and team.
My doctor says to me every time I go for an appointment, “Go back out there and just live your best life.” And I am and I have. People tell me to slow down or that I’m doing too much. I just say no.
If you, or someone you love has been affected by a pancreatic cancer diagnosis, we’re here to support you. Call our free support line on 0808 801 0707 to speak to one of our specialist nurses on the phone, or email them at nurse@pancreaticcancer.org.uk
