Glynis' Story - told by Glynis

Name:             Glynis Freeman

Lives:               Bedford

Diagnosis:       Barrett’s oesophagus then oesophageal cancer

For as long as I can remember, I always suffered with indigestion and associated symptoms and things getting stuck.  As a child I was labelled a fussy eater, greedy, attention-seeker, and that was interchanged with being ‘too thin’ and ‘starving myself’.  They just couldn’t make up their mind which label to give me.  My very first day in school I got told off by the dinner lady and made to sit there in the dining room for the whole of the lunch break while she lectured me on children starving in the world and I was wasting good food.  I had eaten my vegetables, just not the meat.  I couldn’t eat the meat without being sick.  When the bell rang at the end of lunch break I ran away.  I ran all the way home and refused to go back to school ever again.  I never did have another school dinner but my mother did march me back to school the next day.  So from then on I always went home for my lunch.  The rest of my childhood was quite uneventful.  I was active, I swam every day and was trained by the town swimming club, cycled everywhere, and attended the local dance school.  However, the indigestion still popped it's head up every now and again.

Zoom on to my adulthood.  Things changed.  I was finally in control.  I married into the RAF and this gave me the opportunity to develop further my love for people, travel, cultures, photography – and to enjoy food.  At last.  For years my childhood foe had been banished and I enjoyed a new freedom.

The new millennium arrived, and brought the indigestion along for the ride.  In 2006 I was diagnosed with gallstones and had my gallbladder removed and the gallstones in my pancreas also removed.  That sorted it for a short while, but then the indigestion and nausea started to develop again, but this time with an annoying cough, hiccups, and things getting stuck, and sometimes it was a pressure, with the addition of bowel issues too.

Eventually one night the indigestion was there but felt different.  The pain was so bad.  I couldn’t find a comfortable position.  My temperature was high and feverish and the pain went down my arm and also down into my right side, which felt like lead, and I was close to passing out.  I had collapsed onto the floor and had a feeling of desperation sweep over me.  I was clutching my chest as I struggled to breathe through it.  I panicked and thought I was having a heart attack, and thought my appendix had chosen a really poor time to complain too, and I was on my own.  The next day I made an appointment to see my GP, who confirmed it was indigestion and gave me some tablets to take to help ease it.  I later received an appointment to see a gastroenterologist at the local hospital, and he then referred me for an endoscopy.  I had the endoscopy and they found evidence of reflux, and biopsies were taken.  In 2015 I was diagnosed with Barrett’s Oesophagus and an ulcer.  I was prescribed proton pump inhibitor medication (PPI).  I had regular endoscopies to monitor it and to check the ulcer healed, and biopsies were taken every time.  Every time my endoscopies showed low grade dysplasia.  It seemed stable, albeit painful at times.

Then in the autumn of 2017, I will never forget, I was sitting by my father’s bed in the hospital.  He had cancer and some other complex issues, and had developed sepsis.  I got a call to ask if I could pop along to my consultant’s office in outpatients.  So off I went.  I was only in there a couple of minutes.  This was the first time I had met this consultant.  He introduced himself and then introduced me to a lady who was there with him.  He said that Addenbrooke’s were ready to see me now.  I had no idea they even knew I existed.  He muttered something about research and that they were waiting for him to confirm that he had spoken to me.  Then he introduced me to the lady and we went off to another room.  I didn’t ask him any questions.  I think my brain just stopped.  I spent another couple of minutes with the lady and she gave me a card and said I could call her any time, day or night.  Again, it didn’t occur to me to ask why.  It was all pretty surreal.  I never heard from her again.

I went back to the ward to sit with my father and put the encounter with the consultant behind me.  Anyway, the next day I got a phone call from the research team at Addenbrookes and we arranged for me to go and see them.  The lady on the phone told me to have someone take me as I would be spending ten minutes with the consultant and then we would walk into the procedure room together and he would do an endoscopy.  In the recovery room it turned out that I had gone there because my Barrett’s had changed from low grade dysplasia to high grade dysplasia.  He said it had grown since my last endoscopy at Bedford and he had taken biopsies.  He arranged an outpatient appointment for me to see him for a month later.  As the appointment day got closer, I had a battle with myself as my father was very ill and I didn’t want to leave him.  He had to come first.  However, I did go in the end.  My poor consultant, again it was a pretty one-sided conversation.  I certainly made him work hard that day, and heaven only knows what he must have thought of me.  He explained to me that the biopsies had confirmed an adenocarcinoma, oesophageal cancer.  Well that got a slight reaction.  I think I said ‘ok’ and asked if we could look at the pictures.  He said it was aggressive.  In three months I had gone from low grade dysplasia, through high grade dysplasia and on to an adenocarcinoma.  Having been stable for so long, it had suddenly taken off.  I didn’t really care, and just said ‘ok, let’s do it’. 

So we did it!  My consultant introduced me to an associate consultant and together they started my treatment, which consisted of endoscopic mucosal resection and endoscopic radiofrequency ablation, and I was prescribed Lansoprazole, which is a PPI medication.  After the first treatment the associate consultant then continued my treatment and into surveillance.  I’m in remission now, still under surveillance.  I still have some digestive issues to deal with, but have just been told my latest endoscopy showed no sign of the Barrett’s either.

My father died a month after I started my treatment.  I never told him about my cancer.  I didn’t want him to worry.

My team were amazing.  Not only did they treat the physical issues of my Barrett’s and cancer, but the emotional aspects too.  Emotionally I had pretty much shut myself down and was just going through the motions in order to be able to care for my father.  However, my team made sure to treat the whole of me, both physically and emotionally.  They were gentle, caring, and helped me to smile, talk and laugh again.  Positivity all the way, with a change of mindset and attitude.

So my message to you is, it is never ‘just indigestion’.  If you have persistent indigestion or any difficulties concerning food, see your doctor and get it checked out.  It is better for them to be able to tell you all is fine and it is ‘just indigestion’ than for you to not go and then find that you have left it too late.  Talk to them, tell them everything.  Barrett’s is very treatable if it is caught early and cancer may then be prevented, and if it can’t be prevented, early diagnosis gives the best chance of cure.

Association with HCUK:

Glynis was treated by Dr Massimiliano di Pietro and his associate, Dr Władysław Januszewicz who are based at The Cancer Centre at Addenbrookes Hospital, which part of our Trustee Professor Fitzgeralds team.  Glynis has been a great supporter of HCUK in recent years and is also an active member of our Facebook Support Group.  In preparation for Barrett's Day 2022 the charity approached Glynis to see if she would be prepared to share her story.  We are so grateful that she said yes as her story clearly highlights the importance of seeking medical advice for your health concerns and how crucial surveillance is in managing this condition.