It took a month of tests before John Keane had a diagnosis explaining what was wrong with him. He had what he thought was a cold, before things began to deteriorate. Finally, as his prognosis was worsening, and there were conversations around palliative care, an answer was found: he had non-Hodgkin’s lymphoma.
At the time, he says, he was quite pragmatic. An engineer by trade, he was happy to comply with requests from his medical team because it meant there was a plan in place.
“After I was diagnosed, I was put on a treatment path. It wasn’t pleasant, it was quite aggressive. But I remained positive through all of that, and I was just so happy to be out the other side of treatment,” he says.
Keane returned to normal life in early 2022, after almost a year of tests and treatment. But things took a turn in November of that year, when he became short of breath while commuting on the Luas to work.
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Knowing he wasn’t well, he went home to rest, before eventually seeing a doctor, who informed him he had three “significant” blood clots – one in his leg, and two in his lungs.
“That was when I really began to question how all of this was possible. It spooked me quite significantly. I was told it wasn’t related to previous treatment and that sent me on a further spiral.”
Often when people talk about cancer, they think only about the diagnosis and treatment. But increasingly, there is growing awareness in the medical community about the impact of survivorship.
For many people, cancer and the treatment can have longer-term implications, whether it be fertility difficulties, mental health challenges or physical changes after being given the all-clear.
The number of Irish people who are living after cancer has grown by more than half over the past decade as survival rates continue to improve. By the end of 2021, the most recent figures available, the number of people living after an invasive cancer diagnosis was almost 215,000.
Prof John Kennedy, medical director of Trinity St James’s Cancer Institute, says this is largely down to the “incredible advances in treatment”.
“A woman diagnosed with breast cancer in Ireland today has the same chance of being alive in 20 years as her mother would have had at the same age of being alive in five years. So the five-year survival rate has become the 20-year survival rate,” he says.
“Prostate cancer survival rates for five to 10 years are around 90 per cent. Survival rates for lung cancer in Ireland have probably doubled over the last 15 or 20 years.
As a result of that, there is a need for a multidisciplinary team to meet those needs post- and during treatment, he adds; a multidisciplinary team considered every aspect of patients’ care, meaning “people do better”.
“A surgeon operates, a medical oncologist gives chemotherapy, a radiation therapist gives radiation. So if you ask them what we should do, they’ll probably say their speciality. But now we get a discussion, people get challenged, people learn and people see subtleties.”
There is a lot of embarrassment in Ireland. But we’re not just trying to keep them alive – we want to improve the quality of life. These guys need to be pulled out of their shell
— Dr John Sullivan
This applies post-treatment too, with Prof Kennedy saying survivorship issues are “different for different patient populations”.
“Younger people have mortgages and they have financial toxicity to their treatment. Older people have more physical toxicities to their therapy and the long-term toxicities are significant,” he says.
“But another advance that I’ve seen over the last 20 or 25 years is that we are better at dealing with side effects and we are better at ensuring they never happen in the first place.”
Dr John Sullivan, Ireland’s first cancer survivorship urologist, is one such example of a team member who helps those with cancer diagnoses. There are side effects of treatment that are “so common”, he says, particularly for men who have had cancer in their pelvis.
“We’re diagnosing the disease earlier, we have better treatments. So because people are younger, all the kind of collateral damage of treatment – whether it’s surgery, radiation, chemo – I think is so much more relevant than it used to be,” he says.
“Forty five per cent of male cancers are in the pelvis. Over 90 per cent of guys that have a prostate surgery will experience erectile dysfunction, and this can take up to two full years to recover. Continence is another one, particularly at orgasm. Fertility issues is another one, whether it’s to do with the surgery obstructing the flow of sperm, from the testes, or lads that have chemotherapy and radiation before or after surgery and there’s a lot of toxicity related to that stuff.”
But these side effects don’t have to be permanent, he says, with many treatment paths available to those who seek them. Furthermore, if there is an intervention earlier in the recovery process “you can improve the recovery time so these guys get back to baseline faster,” he adds.
However, Sullivan says there is an “inability” among Irish men to confront these side effects. He worked in the US for a period of time, and there men were practically “banging down the door for Viagra”, he adds.
“There is a lot of embarrassment in Ireland. But we’re not just trying to keep them alive – we want to improve the quality of life. These guys need to be pulled out of their shell,” he says.
“Often it’s when couples come in, it’s the partner who raises these issues. The men are too embarrassed, they don’t want to confront it.”
According to Keane, it’s not just a reluctance among Irish men about seeking help for physical symptoms. There is also hesitance when it comes to admitting they’re struggling mentally post-treatment.
Though he was quite positive after his initial diagnosis, the blood clots made him realise just how unpredictable life can be. Keane was frustrated because he had done everything he was requested to do, and yet still had another health scare.
“It was like I was moving through society as a shape-shifter. But I didn’t want that. I wanted to be me again. I remember my daughter asked me if she’d ever get her dad back again,” he says.
Those words were hard for him to hear, he says. He knew he was struggling, but hadn’t realised other people had noticed as well. That was what made him reach out to St James’s to seek help. He rang them seeking an appointment for a physiotherapist to help with rehabilitating his leg, as well as for counselling services.
“I made a promise to myself [after treatment] that I had to be nicer to myself. And I realised not speaking to someone, not getting help was not being kind to myself,” he says.
“I remember saying to them [counsellors], I explained to them it’s a bit like a bubble. I said what I was looking for was that my life was like a jigsaw, but at the minute the jigsaw is upside down. I have all the pieces, it’s all there, but I need help to turn the jigsaw over, to say ‘right, life is back to normal again’.”
Such feelings are quite common among individuals who survive an invasive cancer diagnosis. Dr Sonya Collier – principal clinical psychologist in St James’s Hospital, who specialises in psycho-oncology – says after cancer treatment “everyone expects things to be wonderful”, but “often that’s not the case and the future can be quite daunting”.
For some patients, the end of treatment is “the most difficult psychologically” as some patients feel like at that point “it’s almost like being abandoned”.
“From a family point of view, it’s often like: ‘thank God that’s over. Let’s move on, what will we have for dinner?’ But for the person who’s been through [the treatment] it’s like: ‘what have I just been through? What has happened to me? What does the future hold?’”
Cancer-related fatigue and fear of recurrence are two of the most common psychological issues after a cancer diagnosis, she says, with 20 per cent having a “severe” fear of recurrence.
“For most, the distress will be mild and transient. Those with more severe, persistent distress such as depression or severe, disabling fear of recurrence can benefit from specialised psycho-oncology services,” she says.
“For those with persistent physical problems such as cancer-related fatigue, pain, scarring or infertility, psychological therapy can help in the understanding and management of these problems so that people can adjust to this ‘new normal’ and live a life that they are happy with.
She adds: “So, in general there is very good reason to be optimistic, as the vast majority of patients will recover very well with the appropriate help and support matched to their level of need.”
For adolescents, this can be even more difficult, with Collier describing it as a “particularly cruel” time for a diagnosis due to the formative nature of those years.
“During those years you’re forming your sense of identity, developing intimate relationships, occupationally and educationally. There’s a massive difference in a year or two when it comes to adolescence, and it can be hard to pick up life again,” she adds.
Sometimes, however, there are positive changes after surviving cancer. Some people realise they have been devoting too much of their time to work, and decide to reprioritise their time; others realise they want to make life changes in terms of where they are living, or what they are doing.
Keane views himself as being quite different from the man he was before his diagnosis. Previously a ‘maybe’ man, now he says yes to the things that will bring him joy. He has rekindled a love for reading, found a passion in music and begun to play guitar. He has started playing golf, and found the “wonderment” of podcasts.
“These are things that I always had an aspiration to have in my life and never did it or tried and failed and then never pushed past that because I wasn’t very good at it. But now I persevere because they are a value add for me,” he says.
“You are more compassionate to yourself, there is a level of self-improvement, you appreciate your freetime more. It’s so important to me to enjoy the time I have with my friends and family and not look back.”
Most importantly, though, he tries to make someone smile every single day. “That’s when I’ve succeeded. That’s my daily goal.”
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