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Midlands Multiple Myeloma Support celebrates 10 years

After a successful decade of support and encouragement, the Midlands Multiple Myeloma Support Group will celebrate its 10th anniversary with a reflection mass with Fr. Shane Crombie and music by the HSE Tullamore Staff Choir at the Parish Centre in Tullamore at 7pm on Thursday, 30th of May

Patient Invite -Multiple Myeloma 10 years

Living with an “unknown cancer” and “patient isolation” were the key findings identified in a research study led by Mary Kelly, an Advanced Nurse Practitioner in Haematology in Tullamore Hospital. It is the research findings and the experience of Liam McManus, a patient with Multiple Myeloma that brought them together in 2008 to co-found one of the longest running support groups in the Midlands. 

The purpose of the Midlands Myeloma Support group is to provide education, information, and support for patients and carers living with myeloma.

“My research 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.”

The success of the 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 Multiple Myeloma Ireland.

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. It would not be possible to run the group without the support and facilitates of Dochas Cancer Support Centre. 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 underestimated.”

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.

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.”

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.”

For Multiple Myeloma patients  improvements in treatments and symptom management has resulted in significant improved survival and for the majority it has become a 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.”

The Midlands Multiple Myeloma Support Group 10th anniversary gathering takes place at 7pm Thursday, May 30th with Mass celebrated by Fr Shane Crombie and the Midland HSE Choir in the Tullamore Parish Church and light refreshments afterwards in Tullamore Parish Centre. All patients and families affected by Multiple 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 maryb.kelly@hse.ie .