Danielle Barron reports
Multiple Myeloma Ireland runs several support groups across the country but in a case of the
chicken and the egg, it was in fact the support group that came first.
The longest-running group is that in the Midlands, and this year it celebrates its 10 th anniversary. The
success of this group, and the clear need for such support and information among patients, carers, family and friends, in fact led to the establishment of Multiple Myeloma Ireland as a charity. A decade on, several support groups exist across the country and the charity is affiliated with the Irish Cancer Society and supported by Myeloma UK.
Established by Mary Kelly, Advanced Nurse Practitioner in Haematology for Dublin & Mid Leinster, in 2008, the thinking behind the Midlands Myeloma Support group was to provide education, information, and support for patients and carers living with myeloma. Kelly had uncovered the need for such an initiative, having carried out research that highlighted the isolation patients experienced due to the largely unknown nature of myeloma. Indeed, her study found that one of the greatest challenges facing myeloma patients was living with an “unknown cancer.”
“The study findings illustrated the importance of addressing patients’ emotional and psychological needs, and the significance of providing support for those with myeloma,” Kelly explains.
“It was clear that patients wanted to be able to talk to others with myeloma, and be provided with peer to peer support in a relaxed safe environment. Carers also benefited enormously from talking to others.”
In the decade since that first meeting, it has grown and grown. Monthly meetings now take place in the Dochas Cancer Support Centre in Tullamore, and Kelly emphasises that the group is a hugely
important resource for people with a diagnosis or living with multiple myeloma. Other groups soon
followed; the most recently established is in Wexford, but there are also groups in Sligo, Limerick, Dublin and Drogheda.
Although the Midlands support group officially caters for those in that region, people have travelled from all over to attend meetings, says Kelly.
“We have heard people say that the ‘Tullamore support group gave me my life back’,” says Kelly. “Its importance for helping people through what can be a hugely difficult time cannot be
In terms of patient education, the Midlands group has played host to a wide range of speakers on a variety of subjects from diagnosis through the entire patient journey. The group offered practical and emotional support; with expert speakers such as consultants and nurses coming to explain the disease, its effects, and possible treatments in more detail, as well as valuable advice from dietitians, occupational therapists and physiotherapists. Information on clinical trials has also been regularly offered.
Anne Fitzgerald, a carer for her husband who has multiple myeloma, was at the very first meeting.
The need for such a group cannot be overstated – as Anne explains, the complex nature of multiple
myeloma there was a complete dearth of information available. “Before that, we knew absolutely
nothing about multiple myeloma, I didn’t have a clue what it was. At least with other cancers you
might know a little bit, but we had no idea what it was or what it does.”
She says, in hindsight, there was an “urgent” need for such a group to be established. “I have to
compliment Mary Kelly for taking the initiative and setting it up. It was great to meet others in the same boat, other carers. It’s invaluable – I don’t think I have missed a meeting since the first one.”
As most forms of multiple myeloma are managed much in the same way as any chronic condition,
Anne explains that members of the group have become firm friends over the years and social
outings to the theatre or sports events are a major highlight. “We have made great friends through the group. The sad part is that we have lost some, but it is great to see people living so much longer with it.”
Multiple myeloma patient Liam McManus has been going since “day one”, having been diagnosed
some years before helping to co-found the group. “In hindsight, there was absolutely nothing else
for us.” The self-employed building contractor has been in remission for 12 years now, and says his presence continues to be of great reassurance to newcomers to the group. “They are always
delighted to meet me, as I have lived with the condition for so long. I am very well now, and I work full-time. I always say to people, you might have become a patient but there is no need to become an invalid,” he says.
“I recently spoke to someone who was facing into stem cell treatment and she was thrilled to realise I have been in remission for so long. When I am driving home after the meetings, I like thinking I might have done something for someone.” McManus also agrees that the social side is extremely important. “It’s more of a gathering than a meeting. We have our Christmas nights out and we go for meals and to concerts.” He emphasises how important it is for patients to speak to someone who knows what they are going through. “I always found the support group very helpful and always got something out of it. I would encourage anyone to go to a support group if there is one in their area.”
Multiple Myeloma Ireland will mark their 10 th anniversary with a gathering on May 30 th with Mass celebrated by Fr Shane Crombie and the Midland HSE Choir in the Tullamore Parish Church andlight refreshments afterwards in Tullamore Parish Centre. All patients and families affected byMultiple Myeloma are welcome. The event will also be an opportunity to remember those who are
sadly no longer with us. Family and friends are most welcome. For further details please contact
Mary Kelly on 086 7804007 or email email@example.com