This caught my eye while getting ready for my half marathon today. It is taken from a U.S. website:
When blood glucose becomes low (hypoglycaemia), marathon runners complain of “bonking’ or ‘hitting the wall”; they no longer have enough glucose in their blood for their brain to function properly.
Did you know that the term “bonking” comes from the sport of cycling? When blood glucose levels got too low, riders fell off their bikes and “bonked” their heads on the ground!
To read more about the science behind bonking click here
Liz Monahan works tireless for the Bone Marrow for Leukaemia Trust. She is paid for it but they get a lot of bang for their buck ! It is great to see a non-profit organisation run so professionally by such a passionate person. She is called the Executive Officer and she has “to make it happen” for the Trust. Her boss is my former doctor, Profession Shaun McCann.
When I was 16, recovering on the fifth Floor of Hospital 1 in St James after my bone marrow transplant, I remember him chewing the head off a student doctor for not knowing my blood test results from that morning. It was highly entertaining. There was five students gathered around my bed. He was very nice to me, asking how I felt, keeping me up to speed on my progress but then after a minute turned his attention to his students. “What is Fiachra’s T-cell count today?” he asked the student who had taken my history and reviewed my results earlier. The answer didn’t come fast enough.
The Professor turned to me. “Fiachra, what is your white cell count today?” he asked. I told him. “Good, it is up 1 from yesterday”, then he turned back to the unsure-footed doctor and let him have it!
“I know the results of every patient on this ward and you can’t even remember one, come on!!” he said in a raised voice.
I smiled. It was good sport for me. In my time in hospital dozens of student doctors had taken my medical history, asking the same questions, prodding and poking, taking their notes and then leaving. Less than a handful seemed to realise that they were talking to a person rather than a patient. They were understandably pre-occupied with the questions they had to ask and the diseases they needed to distinguish. It was like being examined by a pathologist whilst still alive. I can hear the same questioning style in some sales people and imagine it leaves potential buyers as lukewarm as it did me in hospital.
A good few years later, I was returning as an outpatient to the hospital. The routine was to go to Hospital 1 for blood tests in the morning. Sometimes it could involve a bone marrow test. This is where the young doctors could get their revenge. The procedure involves lying face down on a trolley, lowering your trousers to half way down the buttocks and then having cold iodine rubbed on your skin. After a minute fiddling with the kit the doctor carefully finds the right spot to stick a big needle through your hip bone and suck marrow out. It is surprisingly painful. For reasons only known to Darwin or God, there are a lot of nerve endings inside bones. Nature, and more particularly these nerves, abhor a vacuum. It was this part of the process that was most painful. Later it became less painful and I asked a nurse if I was imagining this or if the procedure had improved in some way and she told me that younger people have softer bones so it tends to be more painful. 
Anyway, I was left waiting around in the morning. An hour passed then two. Then three. Luckily I was confident enough about my health at this stage to not hang around so I left. I think the young doctors who were to have seen me had gone off to lunch. I did the same and then returned to the outpatient department that afternoon where normally I would have been given my results by a more senior doctor. It was so many years after transplant that I didn’t normally see McCann himself at that stage. When I presented myself to the administrator’s desk she asked if I had my bloods taken and I told her after a few hours waiting I left. She didn’t remark on it to me and I took the nearest available seat which was about ten feet away around a corner from the main corridor that lead to the consultation rooms. After a few minutes I heard a voice I recognised. It was coming from about 30 feet away.
“What do you mean, you went to lunch?? I don’t care about your lunch. These patients are not coming in to wait for you. We have to see these patients for their long term follow up and they help us with research ! We can’t have them walking off on us because you had to have your lunch”, it was McCann again.
In short, he is a great man, but not an easy man to work for. He is very focused on his mission. He performed the first bone marrow transplant for Leukaemia in Ireland. He is world renowned. He is very nice to his patients. Work-life balance is not his strong point. He confessed this at a function I attended years later for an anniversary of the first transplant.
He is an amazing person but the amazing person this post is about is Liz Monahan. She came to my place of work today to talk to a few of us about the work the trust does. She will go anywhere to tell people about the trust and how they can help. The first day I met her she had come from reassuring the wife of a recently diagnosed patient that there would be a place for her to stay in Dublin for at least some of the time her husband was being treated. Typically someone having a transplant spends a hundred days in the unit, thirty to forty days in an isolation unit. The man’s wife would be only one of two visitors allowed in to see him during that time. Her visits would be very important to him. The loss of income associated with the bone marrow transplant meant renting a place in Dublin was out of the question.
Liz drove to a school in Kerry to get them on board for the trust. She plays students in DCU and Trinity off against each other to drive their fund raising efforts. She marvels at her son’s interest in technology even though she is quite technical herself. She has a bond with young people and they clearly have a bond with her and the trust. She explains that for some reason people in the 17-25 age group rank the Bone Marrow for Leukaemia Trust highly in the list of charities they would like to help. She didn’t expense the mileage for her trip to Kerry. She doesn’t want to drain the resources of the trust when the money is so important to it at this stage. She tries to get as much as she can for the trust for free.
She is supported by a woman in her seventies who was the main officer of the trust for many years before Liz. This woman’s daughter had a bone marrow transplant and that was a motivating factor for her working for the trust. She has worked tirelessly for the cause over the decades too. She still writes out names and addresses on envelopes by hand to invite supporters to buy Christmas cards again each year.
Liz was not so lucky. Her daughter was diagnosed with Leukaemia in 1976. At that stage there were no transplants being carried out in Ireland. Liz was told to start saving because she would need to pay for a transplant in England. The Irish government was not funding even the trip to England at that stage. Liz worked in sales at the time and doubled down on her efforts. Money became more important to her than it had been to any sales person before then. Unfortunately, the Leukaemia had spread into her daughter’s nervous system. At that point transplantation was no longer an option. Liz refocused on taking care of her daughter. It took a toll on her marriage. Remarkably her daughter lived from her diagnosis at age two until she was twelve. Her son was only a few years younger. Liz studied psychoanalysis. It had always been an interest of hers and she thinks it helped her son to be a little less hurt by the loss of his sister. For years afterwards she practised as a psychoanalyst and lectured others in the subject. She waived her fee if someone needed her to.
She has been with the trust for a year and a half and finds it tough. She likes the independence but she would like a little more resource to get things done. After just two weeks of my own small fundraising efforts I am finding it tough going. I feel like a lone member of the Socialist Worker party trying to kick start the revolution in a world full of complacency.
The world has to be complacent. It is how it keeps going. Every now and then something pierces through the complacency. In Liz’s case it was her daughter being diagnosed with Leukaemia. She is still engrossed in the research side and trying to understand the causes of Leukaemia and other blood disorders. She spent most of her time talking about this when I met her for lunch, more than two decades after the death of her daughter. She is delighted that there is world class research being carried out into the DNA of Leukaemia in Trinity College Dublin, being partly funded by the Trust.
The hardest thing for any non-profit is to pierce the complacency for people not directly affected by the issue the non-profit is trying to address. Fundraising depends on someone knowing someone affected by the issue. If you have been affected by the issue please make contact with the Trust and ask if you can help in some way. If you want to encourage me in the marathon and help the trust, then click the donate link on this site.
Ever wonder what is like to be diagnosed with a serious illness?
From what I can tell, most people try not to think about it. At 16, it is probably the last thing in the world that you were thinking about. The good thing about serious illness is that it is usually a gradual deterioration. This gives your head time to adjust to what your body is doing. With my illness it was a six month gradual decline. I had been playing basketball, walking a lot, running whenever I needed to; unconsciously fighting off infections like everyone else.
During the spring or summer of 1987, my bone marrow decided it would be cutting back on the production of blood cells. It started with a ‘go-slow’. I noticed this at first when my jump in basketball was a bit more effort. It then became even more effort with even less result. My upward thrust decreased from a foot or two to an inch or two.
After another couple of months I could even notice walking was more difficult. Nobody else noticed because it was not the appearance of my walk that changed, it was the effort. I walked every day from Connolly train station to Parnell Square, about a mile, to get to school. The walk up the gradual slope of O’Connell Street started to feel like an ascent of the Eiger. Getting up the ordinary hill of Parnell Square East was as gruelling per foot progressed as the summit of Everest. I know this because it is the same phenomenon at work on your body i.e. oxygen deprivation.
At altitude, it is the air that does not have enough oxygen. With anaemia, it is the blood, specifically red blood cells, that do not hold the oxygen. It makes you tired, sleep a lot, get dizzy when you stand up,and then eventually start fainting with any exertion. By September of 1987 that was happening to me.
In the meantime, white blood cell production had also slowed to a trickle. No more fighting infection for me. No more platelets to stop blood clotting. A teenage spot would bleed longer than it should. Brushed teeth would stain my pillow with blood.
Early that September, I was walking back from school to catch the train with my younger brother. We climbed the steps of the train station and walked to a seat. I noticed that I was ridiculously exhausted in comparison to him. When we sat, I took a few seconds to consider my words, then said “I think I am dying”. I can’t remember his reaction but I’m sure he was worried. I don’t think I went to school the next day. My dad took me to the GP when I fainted on the short journey from my bedroom to the toilet. The relief of fainting when you collapse because of a lack of oxygen cannot be described. You get a high from it and lie on the ground, happy.
The G.P. took a look at me. I remember sitting down while he looked into my eyes with a light pen. He asked me to look up. I was in a bit of a daze. I thought I complied but he pointed out that I was looking down. The next stop was the Mater Hospital for a blood test. The results were due to be sent out to the G.P. in a week. The next day my father got a call asking for me to be presented at the Mater Hospital. It was supposed to be for further testing but they admitted me. The admissions process was very similar to any place that admits people overnight other than on a hospitality basis.
They take your name, your reason for admission, your belongings and give you a number. The biggest prison in Ireland was only a few hundred yards from the wall of the Mater Hospital. The inmates of both places have a lot in common. Occasionally our paths crossed in the out-patient blood testing clinic. Once a prisoner sat across from me handcuffed to his gaoler. He looked at me as I sat next to my mother, looking at him. I hope he is out now, doing good. I have no idea what he was being tested for.
In the hospital, I often longed to be able to walk out the door even just to walk in the rain without a wristband, a drip, a fixed mealtime, the smell, the tea and biscuits at 7 o’clock. The feeling I shared with the bitterest of Mountjoy inmates was the sense that I was betrayed. Betrayed by my body, the one that I never dreamed would let me down. It felt like there was ‘me’ in my mind and ‘it’ was my body in a way that must seem metaphysical to anyone that hasn’t been through something similar.
My diagnosis left me asking ‘what do you mean, my bone marrow has stopped making blood cells? Why would it do that?’ a question that has not been answered to this day.
It also gave me an appreciation for life, not la dolce vita just having a pulse and a body that stays upright when necessary. I came to appreciate that being deprived of your liberty for any length of time is a significant punishment. Nobody should ever be given a death sentence. Something I believe strongly to this day.
A bone marrow transplant was a reprieve for me.
http://www.youtube.com/watch?v=v8sfy7GEQmc&feature=youtube_gdata_player
I just lost track of time running...
Read More Post a comment (0)Yesterday, my cousin called to say she heard about my run and was thinking of doing the Kildare half marathon. She wasn’t sure she could do it but said she could do a half marathon if I could do a full one! I will help to get her set up on my charity.ie and sponsor.ie and post details here.
If you are thinking of running in a marathon, or hesitating about any big decision, sometimes you need to just do it!
In five days, we have raised over €1,700 for the Bone Marrow for Leukaemia Trust in Ireland so now I’ve added ways for friends in the U.K. and U.S. to help other transplant charities.
My marathon state-of-readiness scores a one out of five.
- I have not been running for a year so my body has not gone through the physical adaptations of being a runner.
- I have not been active in any other sport in two decades
- I have not put in a base of running 15-20 miles per week over the few months before I began marathon training.
- I have never run a 5k or 10k race or half marathon.
- It is hard to find the time to train.
My self-assessment of one out of five might be high by standard measures. Why do I think I will do it ?
- I am light so there is less of me to haul around the 26.2 miles.
- I ran over 10 miles recently without hitting a limit other than it was bedtime (11.30pm)
- I am getting good advice.
- I will be putting one foot in front of the other for a few hours not thinking about the problems.
- I am motivated by raising money for a good cause and that is where you can help !
Any money raised is motivational. More money is more motivational so please donate something.
Seriously, you had a bone marrow transplant?
Most people who know me now did not know I had a bone marrow transplant. It comes as a surprise, even shock to hear it. That reflects how good the transplant procedure is. So why did I not tell people ? Nobody ever asked, apart from life assurance companies and an employer. They seem to care more about your health than most people. Generally, people don’t want to talk about health issues.
They diagnosed me with a serious problem at age 16 but I was lucky enough to have a sister with a good match for my marrow which took place in St James Hospital, Dublin. The smell of hops brewing at St James Gate is not a happy memory for me. The picture here is an art installation in the isolation ward for transplant patients. It is not an isolation unit !
Recovering after the transplant and related near death experiences, St James Hospital sent me back to the hospital that diagnosed me. Bloated from steroids, bald from chemotherapy, I was as frail as a you would expect someone who was seriously ill for a year. The most common thing visitors would say to me, awkwardly, is “you look great”. The way I would know I was on the path to recovery when people stopped saying that.
One low point came a few months after the transplant. Some school friends came to visit me. I was sitting next to the bed and saw them coming towards me. They were in uniform so it was easy for me to see them. It was a long ward. The Mater Hospital had eighteen beds on some wards. They walked up the ward with me smiling at them and walked past me because they didn’t recognise me. I called them after they passed. The first thing one of them said to me was “You look great!”. For a while after that, strangers who heard that I was over a transplant would often say “well, you look great!”.
It seriously became very off-putting. When I returned to school, teachers said that I should not bother doing exams. Once when another classmate was chasing me in the yard, a well-intentioned teacher pulled him up and told him to stop immediately, did he not realise what I had been through. Sympathy becomes pathetic after a while. It was a big decision to do the national “intercert exam” only seven months after transplant. I wanted to do it. The hospital discharged me a few months before the exams. In case I picked up infections, I had not returned to school so they asked if I wanted to sit the exams on the hospital ward. It was the last thing I wanted to do. I wanted to be back with my friends.
I had dreamed most nights that year of going to school. It was a recurring dream where I was running for the school bus and missed it. I remember in the few weeks before the exam my sister (and donor) got chicken pox so had to move out. My aunt Mary took me in and I studied from there. My uncle, Jack, was a teacher in my school so he helped me with some of the subjects. My cousin helped with maths. I have been told that I have a memory “like a steel trap” but all that sticks in my head from the subjects I studied is Pythagora’s theorem.
I remember the anti-rejection medicine, to be taken three times a day or my new bone marrow would reject my body. With most other organ transplants the risk is the other way around. The blood cells, all produced by bone marrow, reject the new organ because they see it as “foreign”. Rejection in marrow transplants is called Graft-versus-Host disease. For other organs it is called Host-versus-Graft disease. This might seem like a detail but after transplantation that is the biggest issue the donee faces.
After a while with bone marrow transplants, the need for anti-rejection drugs goes away because the blood cells start to feel at home. Cyclosporin was the miracle drug that prevented rejection. Before that, only identical twins had been able to give organs to each other without fear of rejection. It worked well for marrow which regrows or even for organs where you had a spare. Even twins couldn’t donate a heart or liver to each other. Everybody else had to wait until the discovery of an anti-rejection wonder drug. It was eventually found, literally under a rock in Norway. Cyclosporin’s essential compound came from a fungus in the soil there.
It had to be taken in liquid form at that stage and you had a choice of taking it neat or mixed with milk. Either way seemed to make me vomit every second time so I’d have to take it again. It happened several times in the mornings before the exams. It wasn’t a nervous thing because there was no pressure on me. I did pretty well in the exams but instead of people saying “great result”, they said “Great result considering what you have been through”.
Even the next year when I was talking to the well-meaning career guidance teacher she was advising me not to take honours level classes so I wouldn’t put pressure on myself. Some teachers thought my parents were putting pressure on me but the reality is I wanted to do the classes that most of my friends were doing. I did very well in my later exams and it led to success in my career that has astonished me. The most important thing for me has always been to “return to normal”.
After 24 years, I can say that normal service has resumed so today if someone tells me I look great, I take it as a genuine compliment.
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- This is where I was diagnosed and spent most time.
This is a picture of me with my sister. She was four years of age when she donated some of her bone marrow to me. Some of my more useless siblings are in the pictures on the wall behind me. I am the eldest. She is the youngest. None of the three brothers between us met the standard required !
I went from my original blood type to her blood type – from negative to positive after the transplant ! Everyone should register with marrow.org if they think they would like to save someone else’s life. There is nothing more life changing than a bone marrow stem cell transplant and unlike any other organ that you donate, marrow grows back ! I am running in the marathon to prove a point and to raise lots of money for this good cause .
Any money that you give will help to motivate me to complete the marathon. More money is more motivational !
Me and my donor
Twenty-four years after my transplant I am running in a marathon and would love to raise as much money as possible to help others to get this amazing treatment. It was a ‘miracle cure’ for me and the difference between death and a return to a perfectly normal life.The opportunity to run in a marathon came up as a deal on Living Social on January 8, 2012 and I bought it. I have regretted many spontaneous purchases I have made but not this one. It will be my first marathon and the most I have ever run before is 9 miles on a treadmill a few years before this. The marathon takes place on May 13, 2012. Any money raised will be motivational. The more money raised the more motivational.
Thank you for reading about me and my efforts. You can help people going through transplants in different countries by clicking the relevant link for your country below;
Sponsor me for to Be The Match in the U.S.
Sponsor me for the Bone Marrow for Leukaemia Trust in Ireland
Sponsor me for the Anthony Nolan Trust in the U.K.
Marrow is something we all have in common.
An intimidating place for a 16 year old.