MY HEALTH EXPERIENCE:When John Maguire was diagnosed with cancer of the oesophagus, fear went through him 'like a cold steel scythe'. But after radical surgery he has survived to tell the tale. This is his story
I CAME home on Wednesday, August 12th, having spent three months in Cochin public hospital near my Paris apartment fighting oesophageal cancer.
As I write, I am in my final cycle of adjuvant chemotherapy, a bit harder than the pre-operative sessions but bearable. My medical team is acting as if it is Christmas. They consider that I’m cured.
I am still reeling from the shock of all that I’ve been through since I got the telephone call from my gastroenterologist during an office meeting on January 5th to tell me that my cancer biopsy was positive.
The fear went through me like a cold steel scythe. I couldn’t stop thinking about the Nuala O’Faolain interview on RTÉ.
I had been reading about cancer of the gullet on the internet. Barrett’s oesophagus, a pre-cancerous mucous cell condition, had been diagnosed in 2002, caused, as it always is, by acid reflux or chronic heartburn.
The Barrett’s and the French public health system saved me from certain death within four years had the cancer not been detected.
Although cancer does not necessarily develop from Barrett’s, the condition increases the chances. Of course, I thought it would never happen to me.
My GP insisted that I undergo an annual endoscopy, the “stomach camera”, under general anaesthetic. The endoscopy in mid-December last year showed up the cancer which had likely been developing for six months.
Once the panic had subsided a bit, I contacted a friend who is a hospital specialist in Nice who gave me the name of a reputable Paris gastroenterologist. That’s how my cancer year began.
At first, my specialist was hopeful that the problem could be solved by a relatively non-invasive procedure, known as a mucosectomy, the removal of the top layer of cells in the lower gullet where it joins the stomach.
I woke up from a general anaesthetic on January 18th to be told that the procedure had not been possible. The cancer cells had gone further than expected.
At work I put on a brave face, telling my colleagues at Radio France Internationale that everything had gone well. My specialist told me that further tests were necessary as the cancer might have gone into my lungs.
This can happen quite early on as the oesophagus is parallel to the trachea, the windpipe.
In retrospect, eight months down the tracks, I think that the waiting period was the worst of all. Never before had I been faced with absolute uncertainty while staring death at 53 years of age right in the face.
My cancer was finally “staged” on February 28th after weeks of tests. The tumour was “stage 1 in situ” – the size of a one cent piece, had no apparent lymph-node and no organ spread. My gastroenterologist was confident it could be operated on successfully. I was to be one of the lucky 25 per cent who could undergo surgery.
Cancer is a wily enemy. It reduces the victim to using cliché. It keeps moving the goalposts. It is the ultimate game of cat and mouse. It took a medical team of 10 doctors, the most important being the gastroenterologist, the oncologist, the surgeon and the radiologist, to reach a final staging.
They couldn’t agree among themselves whether or not to operate immediately or to subject me to pre-operative chemotherapy. There was some doubt about the status of a single lymph node which still didn’t change the early “stage 1” status of the tumour.
True to form, I made up their minds for them by asking the team’s doubting Thomas who wanted to operate on March 9th which way he would swing if it were he who had cancer. He replied he would do it. So I started EOX three-drug chemotherapy a week later.
I feel that it is so necessary to demystify cancer and chemotherapy. One in three of us get cancer. The majority survive. Here’s another cliché. There’s nothing worse than the fear of the unknown. My anticipation of every stage of the cancer treatment was far worse than the actual, concrete experience.
I had heard so many horror stories about chemo. It’s true that people react differently and that it is often far from pleasant. But if it’s necessary, is there a choice? I was relatively lucky during the first nine-week period of three-week cycles of chemotherapy. The three-weekly infusions were made easier by the insertion of a subcutaneous catheter near my right collar bone.
The current sessions are complicated by my trying to get used to my new digestive system, eating little and often.
It’s funny but everybody I know who has battled with cancer worries about losing their hair. I didn’t, not that it would have mattered much anyway given my zero haircut. Nausea and vomiting were controlled by medication.
But I did get severe neuropathy. Anti-cancer drugs prevent fast cell reproduction, mainly in the skin (hence the hair-loss), the mucosa of the digestive tract (hence the chronic sea- sickness) and the nerves (neuropathy). I had the N-word.
I had to wear gloves against the cold and especially when handling anything from the fridge. Another cliché, you get used to anything, especially taking daily doses of chemotherapy tablets.
All the members of my medical team are nothing short of wonderful, for their technical skills, for their honesty and compassion. I never once felt I was a number, which was all-important since the statistics about survival of oesophageal cancer are chilling to say the least.
I had all of their mobile phone numbers and I used them, albeit respectfully and sparingly. When I went for one of my chemo infusions, there was a public health service strike against cuts proposed by the government of French president Nicolas Sarkozy. I felt so angry that such a vital, excellent service, reputedly the world’s best, could be in danger.
My surgeon had briefed me about the likely outcome of the Ivor-Lewis surgical procedure. I was to be opened first from sternum to navel, to release my stomach and oesophagus from their moorings. After that wound was sown up, I was to be turned on to my left side, the right side of my back cut open, my right ribcage prised apart, my right lung deflated, and my stomach remodelled to replace the diseased oesophagus.
Okay, I said, let’s do it. The 10-hour operation took place on May 27th. It was deemed a success, and 10 days later I was removed from the intensive care unit to an ordinary ward. That’s when the real trouble began.
The surgeon had warned me that having been a cigarette smoker for 30 years until 2004, I had a 100 per cent chance of some form of lung infection after the operation. Had seven years gone by since stopping, my lungs would have been clear.
Little did we know that I would almost die from a massive lung infection during the second week of June. When I came through that ordeal, a leak was discovered in the newly remodelled stomach which necessitated the insertion of a plastic stent to hold the wound together.
A word about pain: the pain-control was total and I suffered very little and the news that my cancer had been stopped in its tracks kept me buoyed up. My carers suffered far more. One of my ex-partners fainted when he came into the ICU to see me tied up to 13 tubes and out of my head from an epidural of morphine. One of my closest friends was deeply upset as she witnessed my descent towards near death in June.
My partner came in to see me every day despite having to hold down a demanding job. The stress on my loved ones, friends and family was immeasurable throughout. I am eternally grateful to each and every one of them who stood by me lovingly and faithfully through this life-changing ordeal.
The major change is that I don’t feel much fear anymore no matter what happens next. Been there, done that.
I obviously have no time whatsoever for the public health service bashers in France. I got A1 treatment from top-level professionals. Agreed, healthcare is expensive. I amateurishly worked out that my three months in hospital probably cost at a rough estimate in the region of €70,000 all told. I have been paying hefty income tax in France for 24 years, to the current tune of over a €1,000 a month, not to count the other taxes I pay. Work it out for yourselves. I have 100 per cent public insurance coverage of all my medical expenses until 2014, should I ever need it.
And I get full pay at work topped up by the social security system for a total of three years, again should I need it. The begrudgers can go to hell, because I don’t intend to, not yet at any rate.
- If you have had a health experience – good or bad – that you would like to share, contact healthsupplement@irishtimes. com
Cancer of the oesophagus: what you need to know
Cancers arising at the junction of the oesophagus and stomach are increasing at a rapid rate in the West.
Ireland has one of the highest rates of oesophageal cancer in the world and incidence of the disease among women is increasing faster here than in many other European countries.
Oesophageal cancer is the ninth most common cancer in the UK. Obesity, smoking and drinking alcohol to excess all increase the risk of developing this cancer.
Another health problem which is believed to be a contributory factor is acid reflux. This is where food and stomach juices pass into the oesophagus from the stomach.
Undiscovered, oesophageal cancer quickly spreads to the stomach, lungs and liver, as well as nearby parts of the body’s lymphatic system called lymph nodes.
It is one of the most difficult cancers to treat. The overall outlook is very poor. The five-year survival rate for cancer of the oesophagus is less than 10 per cent. Survival rates are higher in younger patients who are fit enough for intensive treatment based on surgery, with cure rates of 20 per cent or more.
- For more information, see www.mayoclinic.com/health/esophageal-cancer/DS00500,
- www.macmillan.org.uk/Get_Support/GetSupport. aspx, and www.chemocare.com