I can remember it as though it were yesterday.....it was a Friday in January. Graham had been to see our GP on the Monday and had a rapid referral for an endoscopy.
Following the endoscopy, the doctor said simply "you have an area of your oesophagus that is abnormal", I remember asking him to clarify what he meant & was he saying it was cancer – he simply said "yes, probably". Stupidly, that evening I secretly looked it up on the internet and discovered that there was only a 5% survival rate for this cancer – I was terrified, goodness only knows how Graham was feeling.
Graham put up an amazing fight. First it was chemotherapy to try and shrink the tumour sufficiently for surgery then came the oesophagectomy; a huge and complicated operation, which also revealed that the cancer had already spread to lymph nodes around his oesophagus. After a few months of recovery, back to chemo......and so on for 2.5 years until Graham could fight no longer. He died on the 13th September 2007 whilst we were on holiday in France. I was 39 years old, my husband and partner of 20 years was dead and the bottom had just dropped out of my world.
The anger kicked in fairly quickly. We had already established that the most likely cause for the cancer was the persistent indigestion and heartburn Graham had suffered for the whole time I'd known him. He munched his way through packet after packet of "Rennies" and we didn't have a clue that the heartburn could be doing serious damage. Further research I did after he died, revealed that the cancer would probably have been preceded by a condition called Barrett's Oesophagus (this was the first time I'd heard of this condition) and had we caught it at that stage, the outcome may well have been better.
I resolved then and there to, in whatever small way I could, do two things:
1. Let people know that persistent heartburn can be dangerous
2. Understand why the survival rate for oesophageal cancer was so low and raise money to help promote research into earlier detection and better treatments.
By the Christmas of 2007 I had had email contact with Dr Rebecca Fitzgerald (now an HCUK trustee) and been put in touch with Mimi McCord (HCUK Chairman). In May 2008 I organised a sponsored bike ride for 42 people around the Isle of Wight which raised £10,000. This money is being used to fund prizes for research into Barretts Oesophagus and Cancer of the Oesophagus; named the "Twort awards" after my husband and presented annually at the National conference. Last year I cycled (with two very loyal friends!) from Lands End to John O Groats, raising a further £8500.
Weak stomachs run in our family. My father seemed to have tummy upsets regularly and I was always a fussy eater, suffering much indigestion from my teens.
The situation was, no doubt, exacerbated by my discovery of beer and by stress and depression, which sometimes caused me to drink even more.
I'm quite sure that these factors produced my chronic acid reflux problems over the years, culminating in a diagnosis of Barrett's Oesophagus in 2003-4 following months of persistent heartburn.
When I heard that I was to have an endoscopy, I must admit to being pretty scared. I have suffered from claustrophobia in the past and was seriously worried about having a panic attack. With this in mind, I felt that I should opt for sedation during the procedure.
Put at ease.
On the day of the endoscopy, I was very nervous but was put more at ease from the moment I arrived at the hospital by the friendliness of the receptionist and the reassuring information from the nurse and doctor.
The great thing about sedation is that one knows very little about the procedure – basically you are pretty well asleep until you wake up to a cup of tea in the recovery room afterwards.
Obviously, someone has to take you home and you can't drive or work for 24 hours but I can't say that this was a problem for me. I had a sore throat, but otherwise was fine and able to eat and drink normally.
The follow-up clinic visit with the consultant, Dr Fitzgerald, was very interesting as well as informative, because I saw the photograph of the affected area at the base of my oesophagus – I really shouldn't have drunk so much beer!
I have been on twice daily esomeprazole since then, which has totally cured my heartburn, and I have had two further endoscopies.
Fortunately, no dysplasia cells have been found and I feel very confident and comfortable with my care and treatment.
I am enrolled in Dr Fitzgerald's research study to help develop more understanding of Barrett's and I involved with the East Anglia branch of the support network.
One further consequence is that the fantastic care I received influenced me to change career and I now work in the NHS myself!
Update – January 2009
Again, no disease development at endoscopy last summer. Now on AspECT Trial – randomised to 20mg eomeprazole/no aspirin per day and still fine!
Update – February 2011
My last endoscopy (under sedation as usual) was in October 2010 and went very well – again received fantastic care from the doctor & trials nurses, Sarah & Irene. They must know my insides very well by now! Subsequently received the welcome news that everything is still fine with no further development of the Barrett's "wedge" nor any signs of dysplasia or cancer.
General: I was previously on the Cambridge Branch committee of the Leukaemia Research fund & involved with local fundraising. When I found out that I had Barrett's and inspired by Dr Rebecca Fitzgerald's care & commitment, I volunteered to become a committee member of the East Anglia Support Network at the first major meeting of local sufferers. Somehow I seem to have become Chairman and am supported by an excellent committee: we are all committed to spreading the word about Barrett's and welcome the new emphasis on heartburn as this is generally where it all begins. I honestly believe that HCAS both locally and nationally can help to educate and inform the public and GPs of the potential dangers of persistent heartburn which will hopefully make people seek earlier help and treatment. The subject is very close to my heart – literally!
John Clarkson, East Anglia
18 February 2011
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