‘We have one goal: a permanent home to care for more families affected by cancer’

Coping with the illness or death of a loved one can be extremely difficult – whether the process is restricted by Covid-19 pandemic rules or not.

And, when the survivor is a child, the process is a lot more complicated as the burden of grief can be almost too much for young shoulders to bear – particularly as many will internalise their feelings, only for them to make themselves felt in a big way in later life.

There are specialist teams to support and help families dealing with the aftermath of death and also the emotional turmoil associated with a family member living with a serious illness.

Founded in 1990 by cancer survivor Veronica O’Leary, Purple House came about as the mother-of-two couldn’t find anywhere which offered practical, community-based support for herself, husband and two young sons. For them, it seemed as though, once discharged from hospital, patients were “left to figure out how to deal with the emotional and practical fallout by themselves”.

Now run by her son Conor, the charity, previously known as Bray Cancer Support Centre, has been offering support to families for three decades.

“There was no support to help us cope as children, with issues such as understanding my mother’s illness, the hospital environment and dealing with our worries,” he says.

“Nor was there any practical support for cancer patients such as childcare, advice on what to say to children or on citizen’s information entitlements such as medical cards. There was generally a lack of knowledge around the emotional and practical aspects of living with cancer.

“I would have greatly benefited from going to a place like Purple House when I was a young boy for services like the Climb programme [Children’s Lives Include Moments of Bravery] or art therapy to help me to understand cancer and to process my feelings and fears in an appropriate way. Also, the fears you had as a child don’t leave you even as an adult, unless they are dealt with in a professional way when you are young.

“Seeing families contacting Purple House today, who are in the same situation as ours was 30 years ago, is a big driver for us. We will never stop doing this and thankfully my mum is still leading the organisation today.”

When Conor’s mother Veronica recovered from cancer, she put an appeal out to see if there were any other families who were in the same situation and then set about establishing the community-based centre in Bray, Co Wicklow.

As there were no similar organisations in the country at the time, she travelled to the UK to learn from its cancer centres and brought this knowledge back to Ireland. Her first support group had seven participants, and this has risen significantly over the years, with more than 1,500 families helped by Purple House support services last year alone.

Marisa Hickey and her family know only too well the need for support when a family member is suffering with a terminal illness. Her husband Declan was diagnosed with bowel cancer in September 2015, the same week as their son Dan started school. With no history of illness, the diagnosis was a complete shock and the Dublin family struggled to deal with the fallout.

“Declan had no symptoms until a lump appeared on his neck,” says the mother of two – Juliet(12) and Dan(9). “Thinking it was an allergic reaction he went to see the GP but very rapidly it became obvious that there was a more worrying underlying cause for the lump, cancer.

“A plan was made to have chemotherapy in order to shrink the tumour enough for surgery. The treatment course, which involved a day in hospital and two days with a chemo pump, allowed Dec to continue working and to join in family events. But keyhole surgery revealed complications, and this turned into very complex open surgery.”

Thankfully, he survived the operation but needed further chemotherapy which both Declan and Marisa believed would “be the end of it”. But unfortunately instead of shrinking, the tumour had actually grown, and the cancer spread from his bowel to other parts of his body.

Aged just 46, the father of two died two years after diagnosis and is missed hugely by his wife and children.

“Dec was determined to keep fighting and embarked on a third course of chemotherapy, but his body had enough and he was unable to continue treatment after the first session,” says his widow. “After this he declined rapidly and sadly died in April 2017 when the children were just nine and six years old.

“He was a great dad and fantastic husband – very funny, kind and strong. He worked hard but at heart was a true family man and loved spending time with me and the kids. He was loyal and generous, had a great sense of humour, told really funny jokes and sang funny songs. He was brave and true, compassionate and always optimistic. We talk about him all the time and miss him every single day.”

Naturally concerned for her children, Marisa approached Purple House where over the past three years they have all received much needed support and kindness, which she says has been a lifeline.

“We started going there first when Dec was sick because they ran the Climb programme,” she says.

“This was really helpful for them to understand cancer, what their dad was going through and to cope with the ups and downs of treatment.

“After Declan died Purple House has continued to support us through counselling and group work. Juliet and Dan attend every week and enjoy their time and the support they receive. It is always fun; we are welcomed with open arms and feel very well supported by everyone there.

“It provides an individual as well as collective approach to each member of the family where they are genuinely interested and strive to ensure that each person’s needs are met in a way which is suited to them. They have provided us with play therapy, art therapy, psychology and counselling as well as really fun group sessions.”

This year is the 30th anniversary of Purple House and while there is no denying that cancer is a cruel disease which blows peoples lives apart, Marisa Hickey says cancer support services can help alleviate some of the pain.

“The message I would like to give anyone dealing with cancer is to be brave and . . . believe and hope that you can beat it,” she says. “But if you lose someone to this disease it’s really important to talk about your feelings and have a safe place where you can express what’s going on [in your head].

“For us this was Purple House. It is the most amazing place . . . enabling us to deal with everything which has happened over the last few years and still remain positive and optimistic.”

The professional services normally on offer at support centres such as this include counselling, complementary therapies, bereavement counselling, services for children and young adults including play therapy, creative arts, one-to-one support, Climb programme for children aged five to 12 years, camps and workshops, hospital transport, cancer survivorship programmes and telephone-support line. There are also other services such as acupuncture, health awareness programmes, citizen information advice, food cloud meal distribution and lots more.

However, due to the current situation in Ireland, Purple House has had to close its doors to the public for the moment. Remote cancer support services, including counselling, are available to patients nationwide – call (01) 286 6966, email info@purplehouse.ie, see purplehouse.ie. Hospital transport for chemotherapy and radiotherapy is still available, as is the provision of food hampers for patients who are isolating.

Appeal for help

Purple House manager Conor O’Leary says the service needs help in order to continue its great work.

“Last year, Purple House received potentially disastrous news as the home we’ve had for years was no longer fit for purpose and we needed to move out,” he says.

“So this year we have one goal, a permanent home where we can have more space to care for more families affected by cancer.

“Somewhere for children to play with other kids who have lost mammy or daddy, granny or grandad, or who are living with cancer in their family. Somewhere for parents, children and loved ones to attend counselling sessions, sit in a beautiful garden with new friends, enjoy the relaxing therapy of a massage, or simply have a private room where they can grieve in peace.

“We need the public’s support to help make our vision of the creation of a permanent community based cancer support centre of excellence, a reality.”