'You have to stand up for yourself' - Kilkenny man John Holmes

Speaks about his illness and the John Needs Pembro campaign

Sam Matthews

Reporter:

Sam Matthews

Email:

sam.matthews@kilkennypeople.ie

JOHN NEEDS PEMBRO

Kilkenny man John Holmes at his home at Pococke

More than six years have passed since Kilkenny man John Holmes got his shock diagnosis —a rare form of cancer of the throat.

In the time that has passed, the Holmes family have learned about the nature of a cruel illness, as well as the often brutal reality of the Irish health system. They have also learned a lot about the kindness of friends, and how a community can rally around a cause.

That’s been exemplified by the efforts of the local John Needs Pembro campaign, spearheaded by a committee made up of family friends. The group has been raising funds in a variety of ways to cover the cost of John’s treatment, which is not available through the HSE, except to those who suffer from cervical cancer.

John will has had nine infusions of Pembrolizumab. He receives one every three weeks in St Vincent’s Hospital.

On the couch in the family living room, overlooking the Pococke, John says he feels reasonably good —much better since finishing chemotherapy almost six months ago. His energy levels are still lower than optimal, but he keeps going.

“I’m spending a lot of time in bed, which I don’t like,” he admits.

“I get an infusion and it takes the best out of me for a while, but I’m always trying to do a little bit.”

On a positive note, top oncologist Professor John Crown who recommended the drug, says he is happy that John continue the treatment.

His wife, Edel, remembers the origins of the campaign group.

“I just happened to be in John Joe Cullen’s, and he said ‘right, we’re starting’. I said ‘starting what?’. ‘The fundraiser’ he said. Pat Ryan came in and said ‘there you go’.

“Yeah, it was a surprise,” says John. “It’s huge. Kilkenny is a small space.”

On the morning of this interview, John received a cheque in the post for over €1,000 from someone he hadn’t seen in years. There have also been donations made through the Credit Union, from people who prefer to remain anonymous.

“It does mean everything,” he says.

“It gives you a lift, that everyone has rowed in behind you. It’s hard to express your thanks.”

Support from Edel and from their two children, Jonathan and Louise, has kept him going.

“They never left me alone,” he laughs. “All I want is peace and quiet!”

Diagnosed at the end of 2012, the next seven years would have been hard to fathom. John learned that Pembro was an option for him only last year, and it was a surprise to find that it was covered by the HSE for some patients, but not for others.

“I was sent home, and they said no further treatment was advised,” he says.

He had had gone to see his doctor for a referral. His doctor asked him if we would “go see a guy called John Crown”. John took the appointment. Then the idea of Pembro was mooted, which Prof Crown said was the most likely drug to succeed.

Then, the revelation that each infusion would cost a total of €5,111, including VAT. It was at this stage John Needs Pembro was born.

Lymphodema, a common side effect of cancer treatment, has also been an issue for John.

“I get treatment for it, but I have to go to Waterford for it, because the HSE don’t have anyone here,” he says.

Edel says Vhi will cover up to €500 of this in the year, but that’s all. “We’d have that spent in three weeks,” she says.

His friend Kieran Conway, who has been promoting the cause and keeping John’s plight in the spotlight, lists the various events they’ve held, including music nights, table quizzes, and the big breakfast.

“The big breakfast was a collective show of concern — it was worth as much in terms of morale as well as financially,” he says.
Among the venues to host events are Hackett’s, Kyteler’s, Lenehan’s, the Orchard House, the Village Inn. Local supermarkets have accommodated bucket collections.

John also says support from Kilkenny College, where his children attended, has been fantastic. Kieran says the challenge for the committee now is to keep coming up with new ideas. Among them is a yoga class on International Yoga Day, which will take place at Ballykeefe.

When local councillors agreed to write to the Minister for Health seeking equal access for all to Pembro, they made special mention of the John Needs Pembro campaign, and all its efforts. It was a recognition of sorts.

“We felt finally that Official Ireland has shown some compassion,” says Kieran.
Kieran says they are trying to secure political support ‘across party lines’, and the will does seem to be there.

“We are optimistic,” he says.

“The galling thing is the quality of access. It was made accessible {for cervical cancer patients] because it was politically expedient to make it available.”

The fundraising target for the John Needs Pembro group is €150,000 — enough for 30 infusions, the full course of treatment. “That’s our goal and we are halfway there,” says Kieran.

“We never thought we would be where we are when we met in November, but we’ve got momentum.”
Edel says a big challenge now will be keeping that momentum. It’s hard to go back to people who may have already donated or helped out.

“This is going to be the hard part,” she says.

Kieran says it has been a lesson, but the necessity of the campaign is evidence the State lets people down.

“It’s really galling. But this has been such a well supported campaign. “The more people know what John has gone through or is going through, there is more momentum,” he says. “There is a groundswell here.”

I ask John if he has any advice for someone who might be facing a similar situation to him. He notes that if he had listened to the people who effectively sent him home from hospital to die, he wouldn’t be here.

“Don’t be afraid to ask for help,” he says.

“And, you have to stand up for yourself. You have to look, and you have to ask the questions.”

Here's the link for the John Needs Pembro GoFundMe campaign page.