I was asked if I would consider writing something about my experience with Leukemia. I was asked at a good time because I was just about to travel to Belfast for one of my check-ups. When I was there I, as ever, met up with Susan Piggott, the Bone Marrow Transplant coordinator at Belfast City Hospital, where I underwent my treatment. Without Susan, this feature would not have been possible. Without Susan not much would’ve been possible to be honest. This is for Susan:
White Blood Cells and I
I hated Biology at school. In fact, I hated Science period. I gazed out the window more interested in the games of golf on the course opposite the school than the classroom lessons about white blood cells and red blood cells. After leaving school, any mention of these cells was met by me with a yawn. They may have been part of my make-up, but they meant absolutely nothing to me.
So when I got a call from my GP’s office in November 2002 in relation to my white blood cell count, I greeted it with an indifference that I had almost prided myself on since school. White blood cells? Those minuscule things that made me interested in something as tedious as golf? What harm could they do? Within days I was soon to find out as I was diagnosed with Chronic Myeloid Leukemia. My white blood cells were not only in abundance but were also abnormal.
Chronic Myeloid Leukemia is a slowly progressing cancer that makes the body produce too many cancerous myeloid white blood cells. Treatment normally involves chemotherapy and a bone marrow transplant, with the bone marrow coming from a healthy donor hopefully from one’s immediate family.
Acute Myeloid Leukemia is a more aggressive form of the disease where the production of infected cells occurs at a more accelerated pace. In that instance, the need to undergo treatment and find a donor is of greater urgency.
Discovering that one has Leukemia is quite often accidental. It can be when visiting the doctor about flu, a bad back, headaches or in my case a cough. After numerous cough remedies were not making me any better it took the (thankfully in retrospect) constant pressuring of an intuitive Irish mother and the foresight of a visiting doctor to take a blood sample that revealed the true extent of what was wrong.
Susan Piggott, Bone Marrow Transplant co-coordinator at the Hematology Department of Belfast City Hospital, explains that Leukemia can be detected at varying periods:
“Acute Leukemia can cause people to become unwell extremely quickly, so rarely go undetected for any length of time. Others are found following a lengthy period of non-specific symptoms. It’s not hard to diagnose once a blood test is done, but people often delay that trip to the GP fearing the worst.”
My reluctance to visit a GP was born out of two things: a belief that I watched one too many Woody Allen films and had become a hypochondriac, and secondly that I smoked and sang in smoke filled bars thus explaining my cough.
The search for a matching donor for the bone marrow transplant normally begins with the immediate family. Mothers and fathers cannot be tested but brothers and sisters can. Yet this is no guarantee that there will be a match within the family circle. The national statistic is that only one in four patients will find a sibling donor match. In Ireland that statistic is believed to be different. According to Susan:
“In Ireland that figure tends to be a good bit higher, which is good. It’s possibly due to a tradition of large families and a smaller gene pool. For example, there is less ethnic diversity in comparison to other parts of the UK.”
As someone with three brothers and two sisters I hoped that the pendulum would swing in my favor, whilst at the same time I was quite aware that it does not always work out like that. As it turned out two of my brothers were matching donors and we still hadn’t tested one of my sisters on account of her living in the United States.
Given that their kid brother was ill, agreeing to be tested was not a major issue for my brothers and sisters. But Susan insists that it is important from her position not to pressurize anyone into becoming a potential donor:
“It is a very important element of my job not to persuade or coerce a sibling into being a bone marrow donor no matter how insignificant I think their objection might be. It has to be a completely voluntary process and I have to be non-judgmental and not belittle any doubts, phobias or concerns that they might have.”
It would be unwise to assume that family ties make the job of finding a suitable donor easy. Wisely, Susan and her colleges at Belfast City Hospital run a well-calculated procedure where any unforeseen circumstances can be addressed before testing for a sibling donor even takes place:
“It is up to me to lift any sense of obligation or family duty a sibling may feel. There is a very well established protocol where I speak at length to potential sibling donors BEFORE they are even tissue typed. That is to avoid a situation where we know which sibling matches and then find out that he or she cannot or will not donate. It must be said, most siblings would give their right arm if they thought they could help.”
There is always a constant need for volunteers to be added to the bone marrow/tissue type register. At present there are approximately 56 registers worldwide. Volunteers continually fall off the list as they eventually become less suitable as donors the older they get.
Males have more hemoglobin and bone marrow than females; therefore male volunteers are always in demand. According to Susan, Caucasians are over-represented on the registers, which is why many of the registers are now targeting volunteers from ethnic groups also. The Anthony Nolan Trust (http://www.ant.org.uk/), the British Bone Marrow Registry (http://www.blood.co.uk/) and the National Marrow Donor Programme (USA) (http://www.nmdp.org/orhttp://www.marrow.org/) are just three of the registries seeking recruits.
Another way to volunteer as a bone marrow donor is to give blood via the Blood Transfusion Service. Susan rightly believes that if someone is willing to be a bone marrow donor then logically he or she should have no objections about giving blood. This is especially beneficial given that there is a greater all round necessity for blood donors on a day-to-day basis.
The above factor relates to one important issue. The chances of visiting a GP about an ailment and discovering that it is Leukemia are rare. It’s worth reminding anyone who panics if, for example, they have a cough that just won’t go away or a bout of flu that shows no sign of improvement, that it will more than likely be nothing serious. Susan agrees that people develop a heightened awareness of their own health issues when someone in their family or friends circle becomes ill. This is not exclusive to Leukemia but also relevant to other health issues such as smoking, diet and breast/testicular self-examination:
“Being seriously sick is like ripples on water. It affects and influences the behavior of those around you and that is one of the best learning methods (experiential) that I can think of. It does not always reach the wider society though. The Health Promotion agency, Government advertising campaigns and many charitable groups, target certain groups of people and certain conditions/lifestyles with the plan to inform and equip rather that to scaremonger. Good information is often all most people need to remove fear and motivate them to be proactive.”
I recall being questioned by a lot of people as to what exactly Leukemia was, what I had to go through and why. Many people are aware of terms like Leukemia, Chemotherapy and Bone Marrow but that’s as far as it goes. Susan believes that most people are aware of Leukemia but are perhaps a bit “sketchy” about the details and implications unless they know someone within their circle who was diagnosed:
“My view is that awareness needs to incorporate all cancers, as some are much more common than others. Men in particular are renowned for their reluctance to check out their health…enough said!”
As Susan is well aware, I was one such man. I try not to think about what may have happened had I not reluctantly walked into that GP’s office one Friday in November 2002. It’s true what they say – Mother knows best! Our bodies know a bit too – we should all listen to them now and then! We’re in 2011 and I’m in good health. I still hate Biology but I love being alive and golf is still growing on me!