Multiple Myeloma Insight: The patient and the carer

Bob and Ann McConnell are a devoted couple, who have faced more trials and tribulations than most. Throughout Bob’s journey with multiple myeloma, Anne has been by his side, from diagnosis to treatment.

From our conversation it is clear Ann fulfils three roles – she is Bob’s wife, his best friend, and his carer. Bob had a circuitous route to his eventual diagnosis in 2012. The initial symptom was back pain, but it took a suspected dislocated shoulder to eventually get a diagnosis.

“There was a certain amount of disbelief in my case, as I didn’t feel particularly bad. I had some pain in my shoulder and some back pain but I could live with it. Blood, urine, and bone marrow tests proved inconclusive. It took about six months altogether… the doctors had a hunch and they just needed to prove it.”

Bob has had aggressive treatment, including a stem cell transplant, followed with triplet and later doublet therapy. He freely admits treatment was no walk in the park – he lost 20 kg in weight, and he says it took him almost another year to get “healthy and fat”. Infection was a major issue resulting from the treatment regime – including two bouts of shingles – while a clot in his left eye was yet another complication. He is still experiencing the manifestations of multiple myeloma; recently, he has had bone problems, including his jaw, while he also has severe neuropathy in his feet, which he is on medication for.

Although he can function with it, he says it serves as a constant reminder of his myeloma. “People ask me can you ever forget about this disease, but the truth is, you can’t. While you are living with it, it’s there and most of us feel very aware of it, even though we are in remission. Ongoing treatments can keep patients living longer but there is sometimes a price to be paid. At the moment I am not in a bad place, apart from the neuropathies, and of course I am worried about the jaw. I want to have the best medical treatment but I don’t want to have major adverse effects.”

Bob retired shortly after his diagnosis, and Ann explains that she took a career break to spend time with Bob during his treatment.
“I had a choice, do I spend whatever time Bob has left with him, so he has a better quality of life, and so I do too, as I have a better quality of life when he is in my life, or do I spend time at a job? I chose my husband. We are in a fortunate position that we could afford for me to step back from my job, other people aren’t in that position. We do everything together.”
“We don’t have any children so we depend on each other,” adds Bob.

For Anne, one of the most difficult aspects was having to ask people for help. “When you’re not used to having to ask people for help, it is hard, people have their own lives.”

Something that helped Ann was getting back on the road again. “I had to get my confidence back and start driving. I bought a small Fiat Panda and now I feel very independent. I can bring Bob to his hospital appointments and bring him home again.”

Ann explains that her and Bob are very aware that many people battling myeloma will develop depression at some point. “My husband has a very good mental attitude but both of us are very much on our guard against depression, because if it creeps in, it saps all your energy and you are not able to get on with life. I keep an eye on myself. There are mornings I wake up and I can feel it creeping in, so I am very mindful of it.”

She adds that as a carer it is important “to step back sometimes”.
“You have to have a little something for yourself. I try to go away with my sisters around Christmas, and it’s so important to have something that you look forward to.”

The couple regularly attend patient support meetings in ARC, and are on the board of Multiple Myeloma Ireland, working to help others currently on their own personal journey with the condition. Some are doing better than others, explains Bob.
“It affects everyone differently. Some people manage it better than others, my body seems to fight the treatments but everyone is different. I am really grateful that all the new drugs and research and technology is available. Before it was something of a death sentence. The longer I live I feel there is even more chance that newer and better treatments will be developed. I would tell anyone who has been recently diagnosed to be positive. Don’t fall into a black hole of despair.”
According to Ann, Bob’s myeloma has become a “way of life”.

“With a lot of cancers there is the hope that once you have the surgery or chemo or radiotherapy, you will be cured. That isn’t the case with myeloma. All you can do is live day-to-day and don’t think too much about the future. It is scary following the diagnosis, because you fear all the things that could happen. But they did happen, and we dealt with them and got over them. Bob is one of the lucky ones.”

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