My journey through Pancreatic Cancer as told by Áine Wood, a 51-year-old mother of three from Essex

In life you don’t expect to wake up one day and everything change. I was a fit, healthy, active mum of three who worked full time at a secondary school.  Next, I found myself thrust into a battle for my life facing one of the deadliest cancers. This is my story, one that I pray will inspire hope to others in a similar situation.

The First Signs

On the evening of the 20th of November 2023, I received an email from my 17-year-old sons’ school to say he was losing his access arrangements that were put in place for his A Levels exams in the spring.  This email and the stress that it caused ultimately saved my life.  The day after I received it, I woke up with no appetite, an upset stomach that was swollen, bloated and painful. Everyone tried to reassure me that it was just stress over my sons’ situation. I kept failing to get an appointment with my GP and I was so busy dealing with exam boards that my health had to take a back seat.  However, on Monday 11th December my body had other ideas, my stools turned pale and my urine bright orange, I knew something was seriously wrong.  I was offered a GP appointment in the New Year, so I had no choice but to book a private online appointment.  The private doctor advised me to make an appointment with a gastroenterologist which I did for the following Friday but said if I should change colour to go straight to A&E. The day before my arranged appointment I caught a glimpse of myself in the mirror and I was yellow, I went straight to the hospital.

The Frustration of Misdiagnosis

I had my bloods taken, my liver function was deranged, and I was admitted to a ward.  The next day I was sent down for an ultrasound. I was visited by a liver specialist on Monday who told me there was sludge in my gallbladder and I had passed a gallstone! I was flabbergasted. I explained there was no way that was possible as I had experienced no pain, but the doctor informed me I must have a high pain threshold and that it was possibly a small stone.  I was also tested for an autoimmune disorder but that came back negative.  I was informed there were no abnormalities found on the ultrasound, but they would book me in for a blood test the following week to make sure my liver function was improving. However, my condition didn’t improve, and I went back for a blood test.  The following evening on the 23rd of December I received an urgent call from my GP asking me to go back to A&E as my liver function was even worse! I waited for 9 hours in awful discomfort but due to a junior doctor’s strike there was no one to see me or give me my blood test results so I ended up going home.

Over Christmas, my condition worsened but I had no choice but to battle through for the sake of my family and my mother as we were celebrating her 80th birthday in Ireland.  By this stage I was barely eating, my skin was extremely itchy, and I was glowing yellow.  On the 3rd of January, I presented again at A&E to say I can’t go on like this and needed a CT scan to find out what was wrong.  At 3.30am I was asked to go home by doctors and told that I would be called in the morning with a CT appointment that would happen within 3 days.  I’ll never know how I managed to drive home but was relieved to get a call at 10:30am the next day and told they could squeeze me in for a CT scan on the 31st of January! I was speechless but managed to say I’ll be dead by then.  I phoned my doctors surgery to see if they could help only to be told by the receptionist, I was lucky as most people were waiting for two months.  By this time, I knew I had to go private as the NHS was failing me.

Going Private Saved My life

On the 9th of January 2024, I saw a gastroenterologist who arranged a CT scan. By this stage my bilirubin was 349 and normal range is between 0-21. Following my CT scan, I got a call asking me to return for an MRI.  I knew as soon as I saw the technicians face, they had found something. I was called by my consultant and advised to go to Whipps Cross hospital to have a biliary stent put in.  I woke up from my procedure to see I was in bed 13 and it was the 13th January, I felt it wasn’t going to be good news.  My consultant said they had found a 3cm tumour in the head of my pancreas, it was thankfully isolated, but the only cure was surgery.  Between 10-20% are eligible for surgery but he felt I may be one of the lucky ones they could operate on.  The tumour was encasing my superior mesenteric vein and was adjacent to my superior mesenteric artery.  The team would need to review scans, arrange a biopsy and PET scan which I then had on the 24th January.

Friday, 2nd February will be a day I will never forget.  Early evening I had a meeting with my consultant to discuss the biopsy results.  My cancer was confirmed as adenocarcinoma, that was poorly differentiated and not surgically resectable. I was offered palliative chemotherapy.  I was in such a state of shock, I was a fit and healthy 50 year with an isolated tumour and my only option was palliative chemo, it all seemed so defeatist. I decided, as I walked out of that meeting that I would find someone, somewhere to help me! There was no way I was going to give up and I would do anything to stay alive.  I was here to fight.

A Life Changing Moment

That same evening my friend, Kate, came across an article by Pancreatic Cancer Action about a young guy who had a similar prognosis as me, Dan Godley who endured an intense 12-hour operation and it saved his life.  If he could find a surgeon to help him then so could I. My sister Eilis, who works for an oncology pharmaceutical company in Australia, attended a conference with some of the top cancer specialists in the world.  During this conference, one surgeon was recommended by all whom she spoke to, and that surgeon was Professor Krishna Menon.  On the 6th of February, during my meeting with Prof. Menon everything changed. He told me “As long as it doesn’t grow, we can operate.” This was the lifeline I needed.  I was so traumatised by my meeting on the 2nd of February, I made Prof Menon swear on this and shake hands that he would stick to his word. He recommended a course of action, this included six cycles of chemo, scans with the hope of surgery followed by a further six cycles of chemo.

The Endurance that is Chemo

I was so eager to start chemo as I knew without it, I would die.  I had already been ill for three months and 50% of patients with pancreatic cancer die within three months of diagnosis.  Prof. Menon put me in touch with my second saviour, Dr Khurum Khan, my oncologist.  He arranged for me to have a port inserted under my skin and was so positive and kind.  My chemotherapy was due to start on the 21st February.  To be now surrounded by such a positive mindset after my brutal meeting in early February was so refreshing. However, my first two cycles of chemo were awful. My stomach fell to pieces and the pain was terrible. I had a feeling my plastic stent was not bearing up under the harsh treatment of chemo. Thankfully for me I followed up on my instincts and I pushed for my plastic stent to be replaced by a metal one.  During this procedure they discovered my stent was covered in pus and black liquid. I was days away from a full-blown infection – another close call.

Then came the first breakthrough.  After my first six cycles, a scan in May revealed my tumour had shrunk by over 50%. My oncologist Dr Khan was delighted however, there was still tissue impacting my artery and because of this he wanted to continue with another six cycles of chemo to help improve my surgical outcome.

It was indeed a mental battle to adjust to the new plan as I was all geared up for surgery to happen towards the end of May but knew that I had to push on through with the additional chemotherapy. It was gruelling but from the moment I got diagnosed in January, I was lucky to have a member of my family stay with me.  I’m from a large Irish family and I’m one of 15 children.  My siblings came from around the world to be by my side.  During the second six rounds of chemo I struggled with my platelets, in addition to my platelet’s medication my friends, “Team Áine”, would arrive with hampers of platelets rich food.  The support, positivity and prayers from all my family and friends helped me push through to the end.

The Whipple Procedure

On 5 September 2024 I went into theatre for the Whipple procedure, a complex and difficult six-hour operation due to fibroid tissue still impacting my artery.  They removed half my pancreas and my gall bladder.  My pancreas and stomach were then reconnected to my small bowel and my bile duct was reconnected.

The care I received was exceptional, I spent two days in ICU and two weeks in total in the hospital, but I was lucky not to become diabetic.

Reflection and Gratitude

I know its early days but looking back I realise how incredibly blessed I am to be here.  Pancreatic cancer has one of the lowest survival rates.  One of its victims was my mother, Nuala, who tragically passed away following a bleed from a biopsy on a mass in the head of her pancreas on the 18th June 2024 whilst I was receiving my 9th cycle of chemotherapy.  Her last words over WhatsApp video call with us all was “take care of Áine” and my word my family and friends sure did that.  However, I’m not sure I will ever get over the heartbreak that she wasn’t there to hear my “cancer free” news on the 5th of November. I console myself that she felt she could help me more from heaven which is indeed enriched by her presence.  Due to my parents’ history of cancer, I was tested for any genetic links that may have caused or predisposed me to my cancer but thankfully they came back negative.

I am grateful for every single medical professional who cared for me, my heroes Professor Menon, Dr Khan, the oncology nurses (especially Nellie), my GP practice nurse Jacqui and the amazing team of nurses who took care of me post-surgery but especially for my super, supportive family and friends and for the prayers said for me across the globe, my faith in God was a great source of strength.

If you feel something is wrong push for answers

If there is one thing I’ve learned through this, it’s that you must be your own advocate. If your gut tells you something is wrong, don’t let anyone dismiss you. Keep pushing until you get answers as your life may depend on that second opinion. Let’s hope the future improves for all of those diagnosed with pancreatic cancer.