Blood cancers make up almost 10% of all cases of the disease in Ireland – and a new campaign aims to raise awareness of the condition, writes Helen O’Callaghan
Above from left: Maurice Cashell, living with multiple myeloma; Irish professional boxer Barry McGuigan; Jan Rynne, living with chronic lymphocytic leukaemia (CLL) and Professor Michael O’Dwyer, Professor of Haematology at NUI Galway, at the launch of Blood Cancer Awareness Month.
A COLLEAGUE stuck her head around the door and said ‘They’re looking for blood group B — that’s your blood group, isn’t it?’ Maurice Cashell didn’t feel much like donating blood that day in 1998, though he’d done it intermittently since the 1970s. But something made him get up and say ‘OK’.
“It was the best decision I ever made,” says the Malahide man, a former civil servant. The test showed up an abnormal protein in his white blood cells and he was diagnosed with MGUS (Monoclonal gammopathy), a condition that needs monitoring but isn’t harmful unless it crowds healthy cells or develops into multiple myeloma. “I wasn’t too worried. The haematologist assured me it would be very slow, about one-and-a-half per cent a year, if it was going to develop into multiple myeloma,” says Maurice, 75.
The six-monthly blood tests that now became part of life “didn’t greatly concern” him. “For a long time, there was no movement in the marker.” But in 2010, the protein began to rise — Maurice had smouldering myeloma, the stage prior to full diagnosis of the cancer. Later that year, he was diagnosed with multiple myeloma.
“It was a shock but not entirely a surprise. I was disappointed but not distressed. In the cold light of dawn, there was a degree of luck. Many people discover they have myeloma after experiencing profound fatigue or a broken bone or other symptom.”
In fact, two-in-three people mistake blood cancer for skin cancer. Only one-in-eight associate multiple myeloma — cancer of plasma cells in bone marrow – with blood cancer. These new findings were released alongside the Make Blood Cancer Visible campaign launched this month — Blood Cancer Awareness Month. Blood cancer’s an umbrella term for cancers affecting the blood, bone marrow and lymphatic system. There are over 140 different types, classified into three main groups: leukaemia, lymphoma and myeloma.
The research shows nearly one-in-five thinks it’s rare and doesn’t affect many people — others incorrectly assume low level of awareness is due to low mortality rates. But blood cancers comprise almost 10% of all cancers, with more than 1,900 people across Ireland diagnosed annually — it’s the fourth most common cause of cancer-related death in Ireland.
Former professional boxer Barry McGuigan launched the Make Blood Cancer Visible campaign. His father was diagnosed with Non-Hodgkin’s Lymphoma, a rare blood cancer, aged 52. “He underwent surgery in hospital, but sadly died nine weeks later. My family and I were shocked and devastated,” says McGuigan. “In 1987, we were unaware of blood cancer — what it meant in terms of prognosis, treatment and survival.”
Like the McGuigans back then, almost a quarter of the Irish public today say they don’t know any common blood cancer symptoms. These include unexplained weight loss, fatigue, feeling weak/breathless, bruising/bleeding easily, enlarged lymph nodes, a swollen stomach/abdominal discomfort, frequent and repeated infections and fever or night sweats. Any of these should prompt a GP visit — spotting cancer early is key to successful treatment.
Maurice Cashell counts himself lucky — his 12 years in look-out mode meant cancer was caught as soon as it started developing. “When I look back, I see it as a particularly profitable period. My children got married, many of my 12 grandchildren were born, I travelled a lot — it wasn’t in any way dominated by fear.”
In that phase, he walked sections of the Camino de Santiago several times, mostly with wife Eileen. It wasn’t for any profound religious reason. “I’m not into extreme sports. I’m more attracted to long-distance running. I used to run marathons. So the Camino was a very interesting way to pass three weeks.”
This live-life-to-the-full attitude sustained Maurice when his multiple myeloma diagnosis came. Treatment meant 18 months of chemo plus a stem cell transplant. “I worried I mightn’t be eligible for stem cell treatment, that I was too old.”
He got the transplant. It was tough, he says, but “it opened up four and a half years of chemo-free life”.
A friend advised him to develop a recovery plan. It meant getting his head in the right place through meditation, reading and writing, and spending time with family. “My friend had had cancer too. He’s a management consultant and he applied that thinking and theory to his own recovery process — I rode piggy back on what he’d prepared.”
Maurice has again relapsed into full-blown multiple myeloma. He’s getting regular, intensive chemo on a four-week cycle. He has good days and bad. “A bad day is when I’m a pain in the butt and impacting negatively on my wife and family. Sometimes, I get tired, angry, depressed — none of these are particularly useful.”
A good day is when he reads about further developments in treatment for myeloma and other cancers. “I’m struck by the progress made even since 1998. I feel optimistic. There’s some evidence the [abnormal] protein [in my blood] is diminishing. I have no debilitating side-effects. What the future holds, I don’t know. But I’m well. I’m able to walk, talk, go out, socialise. I talk and talk and talk about cancer — it’s what I recommend anybody with cancer to do.”
Make Blood Cancer Visible was launched by blood cancer support charities, the Irish Cancer Society, Multiple Myeloma Ireland and Chronic Lymphocytic Leukaemia Ireland, in partnership with Janssen.
A free patient information event for people living with blood cancer takes place on Wednesday, September 27, at 6.30pm in the Davenport Hotel, Merrion Street Lower, Dublin 2. Speakers include psycho-oncologist Eric Lowe, former CEO of Myeloma UK, and Beaumont Hospital haematology nurse specialist Rachel Fox.
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