Tommie Gormantalks about his experiences of carcinoid cancer treatment in Sweden and about the many people he knows who are surviving carcinoid cancer and similar conditions
Every nine months or so my body demands its time. Getting ready for the "mortality check" brings its own special dynamics. Often when packing the suitcase, making the arrangements to go to Sweden, I feel like a war-time agent, preparing to be dropped from a plane behind enemy lines into the darkness.
This time the preparation was more difficult on the system. What were supposed to be four gentle family days had been spent reporting seven lost lives in Omagh. Rows about strikes, salaries and the health service were everywhere.
The clogged roads 30 miles from Dublin, the overcrowded airport and struggle to make the flight seemed to be metaphors for the way we have messed up our lives.
Leaving Dublin, the needle was lodged at "disappointment" next to the category called "despair". The guardian angel who constantly whispers about offering no refuge to naysayers and illness was strangely silent.
Hope came that night in a room at the University Hospital in Uppsala. When I arrived there, a doctor called Per Hellman was waiting to see me. He is the one who has prolonged my life by performing complex surgery seven years ago. He wanted to introduce me to two post-operative patients. Barbara is from Connacht. Sean is a retired teacher from Munster.
Barbara has the countenance of someone who has survived many battles. In fact she has undergone surgery 11 times for a rare endocrine tumour condition called MEN I. Four months before, Sean and those who love him thought he was dying. He has cancerous carcinoid tumours on two lobes of his liver and in several other sites.
Barbara and Sean wanted to meet me because their awareness of the possibilities of treatment at Uppsala had been fuelled by an RTÉ programme Europe Cancer and Me transmitted in 2002 and by an Irish Times article written at the time by Kathy Sheridan.
Barbara's sister and Sean's wife and sister-in-law were in the room with them. We sat alongside Hellman for two hours, talking and laughing, acutely aware that the Swedes and those within the Irish medical system who had referred them to Uppsala had saved two Irish lives.
My challenge is called carcinoid cancer. It is a relatively rare condition. Up to 1,000 people on the island of Ireland may be affected by it. Carcinoid tumours produce hormones which distort the functioning of the system. They grow in several areas like the mid-gut and the lung and frequently they gather like leaves around a drain in the liver. From scan to scan the number of visible secondary tumours lodged on my liver varies from 12 to 20.
It can be a messy disease as the hormones often produce flushing, wheezing, disrupted digestive functioning and diarrhoea. Sometimes a secondary tumour grows in the right hand side of the heart. Often the disease develops quietly and remains undetected for many years. The Belgian surgeon who found a primary tumour in my mid-gut in 1994 was operating for what was thought to be an appendix problem.
Surgery is one of several ways to tackle the spread of the disease. The use of complex, expensive drugs such as Interferon and Sandostatin is another. In some cases where liver functioning is damaged by the combination of tumours and hormones, cutting the blood supply to a liver lobe and letting it regenerate (embolization) is an option.
Sometimes the liver lobe is treated with poisons - chemo embolization. Burning off tumours, applying an electrical charge through fork prongs - radio frequency - is a new possibility. And others are at the research and clinical trial stage.
In my own case I had surgery in 1994 for the removal of a primary tumour and a more complex operation in 2000 to take away secondary lymph nodes. The collection of tumours on my liver is scattered in pepper and salt manner around the lobes.
Surgery or radiofrequency would leave it like a Swiss cheese. Since 1998 I've been taking a weekly Interferon injection and I get a shot of Sandostatin injected into muscle once a month.
They are heavy-duty drugs and the Interferon is particularly hard on the system. There are days when it is difficult to get out of bed, when the mood is bleak and the muscles ache. I constantly tell myself the drugs are friends who keep me alive in a contest where mental strength and psychological battles are important factors.
So far the treatment has held back the spread of the disease and counteracted its symptoms. I often think I am driving a car, with no spare wheel. If and when that bumping feeling comes, I'll know what it means.
There are downsides to being publicly associated with an illness. Once a total stranger stopped me in the street and said "aren't you the fellow with the cancer, is it in the liver you have it?" She took no notice of the small boy by my side.
Last month a woman from rural Ireland phoned. She didn't give her name but she talked about her diagnosis for breast secondaries and her worries about where that might lead. In the background were sounds of little children. Her voice was full of fear.
I could offer no advice about a special place where she would receive a form of treatment guaranteed to deal with her illness - all I could say was that I knew the oncologist she was dealing with to be a good man.
But the purpose of this article is to tell about those I know who are surviving carcinoid cancer and similar conditions. Conor, a father of two from the west of Ireland, is one. He had received liver surgery in Ireland and, as he put it, believed he had been sent home to die.
He made contact via a local radio station. When I saw him, I knew he was in trouble. He was on no medication at the time so the tumours and rogue hormones within him had free rein. Conor's Irish doctors and the HSE facilitated his travel to Uppsala and after complex, specialised surgery, Conor's life should be considerably extended.
Brian, also from the west of Ireland, was being lined up for chemotherapy he didn't need when he became aware of the Swedes. His operation and care in Uppsala were so successful that unlike most of us, he currently does not need the Interferon/Sando statin cocktail.
Aisling from the southeast had been told she was dying and her son was recommended to bring forward his wedding so she might be there. Joe, her husband, was unable to sleep at night because he feared he would wake up and find Aisling dead beside him.
That was five years ago. With the help of the Swedes and the support of the Irish system, Aisling has battled what is a particularly difficult version of the condition. Michael from Dublin is another survivor.
The margins between life and death are so slender. My experience is that it is wrong to conclude that misfortune begins and ends within the Republic's borders. Last year I developed an inflamed gall bladder and after that condition was stabilised, the gall bladder was removed, expertly, with excellent post-operative care.
But for no good reason, I almost slipped between the cracks during that time. In a North of Ireland hospital, the wrong name was over my bed. I received drugs I didn't need that made me sweat profusely and vomit violently. On my own, I was changing my sheets and pyjamas several times during the night. Once, when I was weakened with retching, I rang for a nurse and after one arrived near her shift end, she took one look at me bent over a toilet and bolted.
The night before the operation I phoned a Swedish doctor, Dan Granberg, and he advised that a drip flow of Sandostatin would be vital during the surgery as for someone with my condition, it would be the equivalent of a seat belt for the driver in a car rally. When I passed on the information, I discovered it hadn't been part of the pre-op schedule.
Not everyone has been as lucky as me. The afternoon before I went away for a few days with my family at Easter, a woman called Deirdre came to see me in Belfast. She was 53 and, like me, she had a carcinoid condition. She asked me, eyes fixed, "Do you think I am going to die?"
I looked at her straight in the face and I said, genuinely, "Deirdre, I think you have lots of years left." We hugged and her body had that determination of someone who was steeled for future battles.
The following week Deirdre slipped away. She left behind two fine sons. I'll never forget her and I'm haunted by the sense that had her condition been identified earlier and treated properly, she could have lived longer.
Each time someone we love dies, part of us dies with them. But the loss cuts deeper and leaves a permanent sadness when there is a sense that death came prematurely.
Fr Sean was another. I never met him but we talked for hours, a number of times, on the phone. At a function in July a fellow priest mentioned that Sean was dead and buried. I was stuck to the floor by the news. In September I met one of his parishioners and her daughters on the street in Clifden - she was still grieving someone who was obviously a caring priest.
Deirdre and Fr Sean and many others who succumbed to carcinoid cancer would be heartened by what is taking place in Ireland. It used to be that diagnosis of what is a complex, deceptive illness was patchy and the treatment, as a result, was more miss than hit.
Donal O'Shea, an endocrinologist at St Vincent's Hospital, is one of those determined to change those patterns. I met him and another Irish endocrinologist, Domhnall O'Halloran of Cork University Hospital, in Uppsala last week. They were participating in a course where the Swedes were describing best practice and sharing the fruits of their research at Uppsala's endocrine oncology unit.
In recent years consultants such as surgeon Gerry McEntee in Dublin's Mater Hospital, surgeon Donal Maguire in St Vincent's and the recently retired oncologist Peter Daly at St James's Hospital in Dublin have been brave enough to refer Irish carcinoid patients to the Swedes for the more complex procedures.
Donal O'Shea is developing a relationship with Brian Johnston, David McCance and Joy Ardhill at Belfast's Royal Hospital so that best practice can be made available throughout the small island. The Uppsala consultants have lectured in Belfast and are keen to develop their links with Ireland, South and North.
In the past, because the Irish system wasn't geared to spot and treat this deceptive, rare illness, many Irish patients like us died. If Peter Morrison, a Sligo surgeon, had not referred me to Uppsala in 1998, I would be under a headstone in Scarden graveyard near Strandhill.
I was a member of the Brennan Commission on Health Reform. Some of my colleagues from that body are members of the HSE board and I respect them deeply. I have many relatives and friends working at different levels in the health service - it is often a challenging, stressful, draining life.
But my deepest knowledge of the Irish health system is as a patient, a recipient of services. It would be dishonest not to acknowledge that because of lateral thinking at many levels within the service, from administrators to consultants, patients like me who would have died 20 years ago are now alive.
With the guidance of the Swedes, for endocrine tumour patients like me, Ireland is starting to develop something wonderful. Some of us are alive because of a European centre of excellence. The next logical step is to make best practice the norm, at a similar centre, in our own country.
Tommie Gorman is RTÉ's Northern Editor. The names of some of those featured are altered to protect their privacy.
Cared for in Sweden
Over a 30-year period the Swedes, under Kjell Oberg and Barbro Eriksson, have developed one of the world's leading endocrine oncology units at Uppsala University Hospital.
The Swedes use a range of tests to identify the sites of endocrine tumours and procedures to monitor and challenge the progress of the disease.
As well as catering for patients from the Nordic countries, Uppsala has referrals from as far afield as Canada, the US, Australia, Israel, and other EU countries, including Ireland. Most of the non-Swedish EU patients, including the Irish ones, availing of the Uppsala service, use the E112 system - an EU measure designed to provide the patient with cost-effective, meaningful treatment in the public hospital system of another member state. The support of an Irish consultant, requesting access to treatment in another country, is necessary to trigger the issue of an E112 form by the HSE.
The actual drug which keeps people like me alive, Interferon, is manufactured by Schering Plough at Brinny in Cork. Drug companies utilise concepts such as "Europe without frontiers" and "the global village" to fuel profit-making. The E112 system is an example of patients and health providers availing of the EU citizenship and borderless EU principles.
There are positive aspects to being a carcinoid cancer patient from a small country with an underdeveloped health service. As the Uppsala example shows, there is a tradition of the HSE facilitating treatment for rare conditions in other member states under the E112 system.
There is no tradition of the NHS supporting British patients who wish to receive help in Uppsala. When Interferon is prescribed by clinicians in the Republic for patients with endocrine tumours, the drug is made available. It is extremely difficult for UK patients to receive Interferon under the NHS system.
Often patients from other Swedish regions or foreign countries who don't require hospitalisation during their six- to 12-month check-ups are advised to stay at nearby hotels. It is a practical measure in place for a number of years, designed to limit costs and make better use of the hospital facilities with no downside for the patient.