Palliative care gave me a better quality of life

As we recognise the positive role of palliative care, Áilín Quinlan talks to a father-of-three about his experience after a diagnosis of stage four neuroendocrine cancer

WHEN cancer patient Donal Crowley was invited to Marymount Hospice for a consultation last February, the 61-year-old, who had been fighting an advanced-stage rare form of the disease for more than 18 months, was filled with trepidation.

“I was in a very dark place at the time, and up to that point, palliative care to me was synonymous with death and dying,” he recalls.

“I was taken aback by the invitation because I believed it was synonymous with end-of-life care.”

The father of three adult children from Montenotte, Cork, was apprehensive as he arrived at the meeting, but he left the consultation some time later with a very different attitude.

“People think that palliative care is all about dying,” says Ann McAtamney, Assistant Director of Nursing and Palliative Care at Marymount Hospice, who has worked in this area for the past 26 years.

In fact, she says, “it is about helping people live a better quality of life with a life-limiting condition. “

And indeed, far from being told that all was lost, Donal found himself being advised to attend the hospice’s Flexibility and Breathing Clinic for physiotherapy, because he’d lost “a lot of muscle tone” and shed some three stone in weight:

“They gave me hope.

“As well as the clinical help, there was the hope. They didn’t give me false expectations either; they were candid about my situation.”

Donal has not been unable to return to work since early July 2015, when he was sent to hospital by his GP after suddenly starting to experience such severe pain in his back that he could hardly breathe.

Just a few days later the father-of-three adult children, received his life-changing diagnosis; Stage Four Neuroendocrine cancer, a rare form of the disease, which attacks the intestine, the pancreas and the lungs.

It’s called the Silent Cancer, and for good reason – prior to that back pain he began to experience over that never-to-be-forgotten Friday morning, Donal had had no symptoms:

“I was healthy. I didn’t smoke. I had a clean lifestyle and I played golf.”

“However Stage Four is very advanced and we were all in sever shock.” His initial prognosis was positive, he recalls, but as time passed it became increasingly negative.

Soon after his diagnosis he began to be seen on a monthly basis, by palliative care nurses from Marymount Hospice. This service concluded last May: “They were hugely helpful, because apart from helping me deal with the physical side of what was happening, the mental effect of cancer is very traumatic. This disease had struck me hard and they were of great assistance to me.”

Following his diagnosis, Donal had chemotherapy and two major operations to remove large tumours.

The first of these operations, carried out in November 2015.

It required the removal of 70% of his liver and left him fighting for survival on a life support machine.

Cancer patient Donal Crowley at home in Montenotte. He says palliative care at Marymount helped him cope with the physical and mental aspects of the illness. Picture: Larry Cummins

However, the resilient Corkman pulled through. Then came another huge blow - the unexpected death of his father in January 2016. Only a matter of weeks later, Donal underwent the second operation, this time to remove a number of tumours from his bowel diaphragm and rectum.

He is still recovering from that operation, and has been in and out of hospital on several occasions - up to last July, in fact, he was still very ill.

Last March, about a month or so after his consultation with Marymount, Donal underwent further treatment for a new tumour which had appeared on his liver - the treatment was successful, shrinking the tumour to half its size over three months.

On September 4, Donal returned to hospital for a second procedure on the tumour, following which he will begin a fresh series of weekly physiotherapy sessions at Marymount Hospiece.

He’s not worried about the concept of palliative care anymore: “I think the general perception of palliative care is that it is associated with death and dying. My experience of it is about life and living. Palliative care has helped me mentally as well as physically,” he says, adding:

“The other thing I learned through Marymount is to live for today and make the most of it.”

Palliative care, explains McAtamney, is aimed at enhancing a patient’s quality of life and positively influencing the course of the illness.

It can be provided at different levels and in a range of settings, based on the needs of the patient, she adds.

“People mistakenly think palliative care only comes in when there are no other options but this is not the case because it can help people live longer, better lives.”

“Any medical interventions that are necessary will continue to be carried out – just because someone is being cared for by the palliative care team does not mean that they are no longer under the care of their oncology team, for example,” she explains.

Any patient, once admitted to the hospice will continue to receive appropriate intervention, for example, chemotherapy radiotherapy or surgical intervention.

“I don’t think the public understands this. There is a perception that when someone is admitted to Marymount that there’s no more to be done but in fact, that is not the case.

“Providing palliative care at an early stage in a person’s illness such as chemotherapy or radiotherapy can help avoid complications and enhance the patient’s quality of life.

“Sometimes when a person’s symptoms are well-managed they will live a longer and better life and this is a big part of palliative care.

“Very often people see being referred to palliative care as a negative,” she says, adding that last week’s Palliative Care Week campaign aimed to raise awareness of this form of treatment as a positive thing.

Ireland’s Biggest Coffee Morning, which supports the campaign, takes place on September 14th. For details visit www.thepalliativehub.com


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