RTÉ reporter Tommie Gorman’s diagnosis in 1994 radically shifted his outlook. He would now have to manage his disease and living fully was the way to do that, says.
In January of 1994, RTÉ reporter Tommie Gorman was given a diagnosis that would change his life. “I was working in Brussels at the time and had been home for Christmas,” says RTÉ’s northern editor.
I had what I thought was an upset stomach. At the time, I was doing a lot of early mornings and late nights, travelling a lot, so I put it down to lifestyle
When he returned to Brussels, Gorman saw his doctor and was admitted to hospital with a suspected ruptured appendix. “I went into surgery thinking I had an appendix problem and I woke up with a primary tumour in my intestine, and multiple tumours on my liver.”
Diagnosed with neuroendocrine tumours — the cancer that Apple founder, Steve Jobs, succumbed to in 2011 — the world shifted on its axis for Gorman, who was 37 at the time.
“I’m not a very religious person, but I remember there was a little oratory in the hospital,” he says. “I remember going there and making a deal with whoever is up there, asking them to give me a few years to tidy things up.”
There is an incredible internal shift when you are faced with your own mortality, says Gorman. “Suddenly, everything makes sense. You realise that we are all only passing through and you get a completely different perspective on life. You realise that there hasn’t been a person since the beginning of time that hasn’t experienced this at some stage. It’s a journey we are all on — nobody gets out of this alive.”
Neuroendocrine tumours (NETs) are a group of relatively uncommon cancers. They are often called the ‘quiet cancers’, because they are slow-growing: the symptoms can take time to develop, may be vague, or attributed to more common and less serious problems, such as irritable bowel syndrome (IBS), Crohn’s disease, peptic ulcer disease, or gastritis. As with all forms of cancer, NETs arise when cells multiply rapidly in the body. Normal cells in our body divide in a controlled manner, but in cancer the control signals go wrong. This causes abnormal cells to form, which divide quickly, resulting in tumour growth.
Faced with an exceptionally uncertain future and a treatment plan that was based around watching and waiting, a chance meeting with a scientist, called Frank Gannon, changed everything.
Born in Ireland, Gannon is a world-renowned molecular biologist, and today heads up the Berghofer Medical Research Institute in Brisbane, Australia.
“In those days, the Belgians were just monitoring my disease and there were one or two consultants who should have been more perceptive — their body language was telling me that this thing was worse than the way we were treating it. Frank was the one who nailed it for me. He said to me that you can’t just monitor this thing; you need to be more aggressive.”
With treatment options limited in both Belgium and Ireland, Gorman experienced what he calls his Lotto moment.
“In life, you are either lucky or unlucky. At some of the crucial times in life, you really need a break. In my case, I’ve won the Lotto several times,” he says. It was 1998, and Tommie was in the Court of Justice in Luxembourg, covering the Kohll/Decker case, which would ultimately bring about the E112 form, solidifying your rights as a European patient to be treated in any EU country. “In football or in business or in love, we talk about being in the right place at the right time. In my case, the fact that I was familiar with this case, I knew that I would qualify for this care. I think I became the first Irish patient to use the E112 system.”
Gorman took his care to a centre of excellence in the endocrine oncology unit of the University Hospital, Uppsala, in Sweden, where he underwent treatments and surgeries that have afforded him more time than he ever imagined.
“I kept communication open with Irish doctors throughout this period,” he says. Constant dialogue with doctors, including endocrinologist Donal O’Shea and Professor Dermot O’Toole, in Dublin, and Criostoir O’Suilleabhain and Derek Power, at Mercy Hospital, here in Cork, resulted in Gorman coming back home for treatment.
I said to them that I would repatriate my care and try to be their poster boy, provided they didn’t kill me!
The group established a patient organisation, called NET Patient Network at The National Treatment Centre, at Saint Vincent’s Hospital, Dublin, which has a dedicated team of experts, led by Professor Dermot O’Toole. “The team at Saint Vincent’s has excellent working relations with satellite hospitals in other regional centres, with NET specialists in places including Cork and Galway, where many of our members receive first-class care,” says Gorman.
Tommie and the team of doctors have changed the landscape for anyone in Ireland with a NETs diagnosis.
“We have excellent relations with the HSE, Department of Health, with the consultants and the hospitals. We really have the Irish version of the Swedish model. It is going brilliantly,” he says. “We have good treatments in Ireland and if there are procedures abroad that aren’t available in Ireland, but that are helpful, we can get access to those, too. You hear so many horror stories about the health system, where things aren’t joined up properly, but our experience, as an organisation, is that there is so much goodwill and positive energy out there, that it is kind of inspiring. When the different bits click together, it really can make a difference.”
Tommie Gorman has adopted a number of ways of thinking to live well, with cancer. “Frankly, you have to learn how to compartmentalise things and get on with your life,” he says. “Life can’t be the thing that you do in between treatments and check-ups. You have to try to put a bit of discipline on it, as if to say, ‘that’s your place, now I have a life to get on with.’ Ever since my diagnosis, work has been the ultimate distraction. You can lose yourself in work; you can lose yourself in living. You need to engage in living.”
Northern Editor Tommie Gorman reporting from Government Buildings on #Brexit after the visit of British Prime Minister @BorisJohnson | Follow live updates: https://t.co/4Vw0XGf8xm pic.twitter.com/LUBKiisTq3— RTÉ News (@rtenews) September 9, 2019
Taking control of your body and your illness will set you free, he suggests. “Ultimately, you are a manager of your own illness and while the system can help you and care for you, at the end of the day, you have to try to take responsibility for what you have, because that’s the best way of handling it,” he says.
Other people can help you around a few corners here and there, but it’s in your body and it’s actually empowering, if you can try to take control of it
In the face of a diagnosis and an all-encompassing treatment plan, try not to forget about your loved-ones, says Gorman. “You have got to watch out for the second wave of trouble. You have the disease, but the last thing you want is that the people close to you, the people who love you, get entangled in the process and that they get damaged by it. It’s one thing dealing with your own illness, but if you have the sadness of your condition affecting someone you love is when the second wave of trauma can destroy you.”
It’s not easy to talk about, but choosing the way you exit this world is often the last privilege that we can take advantage of, says Tommie Gorman.
“Sometimes, the best gift that you give to those you love is the way you die” he sayss. “You try to make your departure in an unfussy way. You have power over that, in some ways. The treatments can be debilitating, and it’s empowering to get your head around the way you die.
“The final bit of luck is that you would have the strength to die well, to day gracefully, graciously.”
When his time is up, Tommie Gorman will have no regrets. He’s won the Lotto of life, he says, and has lived more years than he ever thought possible, since being diagnosed with NET.
“I’ve had bad days, but I’ve had a lot of good days. In my case, I feel really fortunate that, against the odds, I’ve been given so much time, so I’d sign up in the morning if that were the case. I’d shake hands and say, ‘I’ve had a good innings here’.”