Your Stories: John Leamy on the road to recovery after acute myeloid leukemia

John Leamy was 63 and living in Greece when a routine blood test revealed he had acute myeloid leukemia (AML). Here John tells us his story since his diagnosis in 2015, including treatment in Greece, returning home to Ireland and now slowly getting back to good health with the help of family support, pilates and walking.

“You have forty-eight hours to start treatment or you’re going to die.” This was the shock news delivered to me by a wonderful Greek haematologist in December 2015, one week before I was due to fly home to spend Christmas with family and friends.

Only five short days previously, I had presented to my GP with what I thought was an irritating sore throat. I was also feeling extremely tired but put that down to my extreme work pressure and long working hours as we tried to achieve demanding targets before the Christmas break.

The universe or god or whatever you believe in was looking out for me that day as the GP noticed something else and sent me for blood tests. Greece has a great system of laboratories which do blood tests. You can walk in off the street in the morning, select your tests from the menu or present your doctor’s letter, pay your fee and get your tests done and generally speaking call back in the evening for your results in writing when you can also consult with laboratory doctors for advice.

Anyways the laboratory was very concerned about the results and referred them straight away to their haematologist consultant Dr H. She rang me the next day and asked to see me that evening. She runs a very busy practice in the evenings in central Athens. An appointment for 9pm stretched until after midnight. She told me that it seemed from the tests that I had Leukaemia but she could not be 100% sure until she did more tests. So I was off to the hospital the next day, oblivious to how serious my situation was. I had heard of leukaemia and knew it was a blood disorder – that was all I knew. So as far as I was concerned going into hospital that day, ten days before Christmas, Dr H would probably confirm her diagnosis and give me some tablets and start some treatment to get rid of the leukaemia.

You can imagine how stunned and shocked I was with her diagnosis of 48 hours to start treatment or to face death. Frantic phone calls were made to family, employers and friends to see what could be done in terms of getting home to Ireland to start treatment. All was in vain as time was against me and so the decision was made to stay in Greece under the care of Dr H in Athens and start chemotherapy. The urgency and seriousness of what I was facing was explained to me by Dr H and her colleagues. My immune system was close to collapse and unless intensive treatment was started it would collapse, and I would die.

I had never thought of dying or had ever been in hospital in my 63 years on the planet nor did I fully appreciate how ill I was. That is the truth. It was only some two years later when I looked back on work emails and personal emails I sent during December 2015 and the following January and February that I realised how incoherent, rambling and disconnected they were and I was.

I was in hospital until the end of January 2016 and in isolation for long periods. My family came to visit, Greek friends rallied around and I was cared for by the most wonderful team of caring doctors and nurses. English speaking nurses were assigned to me and they could not have taken better care of me.

My first bone marrow extract done in February showed that the leukaemia was still present and so it was back into hospital for more chemotherapy. Then on St Patrick’s Day 2016 I explained the story of St Patrick to Dr H, she did another bone marrow extract and this time the results were positive and I was in remission.

Around about this time Dr H had to complete a work-related certificate of medical insurance. I was surprised to read in it that she estimated that it would be at least 18 months before I could go back to work. I thought I was in the clear and that it would only take me weeks, maybe a month to get better.

It was then that the question of getting a bone marrow transplant was raised. Yet another shock and something I knew nothing about and found hard to accept I needed. But putting my faith in Dr H, I went off to meet with Dr K, head of the transplant team in Greece. My youngest daughter was visiting at the time and off we went to see him. For the second time in six months the question of dying raised its ugly head. My daughter asked Dr K what would happen if Dad doesn’t get a transplant. Straight away he replied, he’ll die within five years. A bit of a blow to both of us, but with no other options again I went on the transplant program and began the next phase of recovery – finding a donor.

Before I go on perhaps I should tell you briefly about the treatment. Hours after hours of intravenous chemotherapy, hours and hours of blood and platelet transfusions, daily blood tests and lots of other medication. I never really enquired or was curious about what I was on – all that was Dr H’s job and I had great faith in her. I did suffer an allergic reaction to one transfusion and that was a very scary experience that lasted three days. The great nurses got me through it and put up with my ranting, raving and cursing!! The isolation wasn’t too bad as my Greek friends took it in turns to visit, wearing masks, gowns and gloves and some of my family were able to get over for visits as well. The real downside for me of the isolation was the food. What I could have had to be specially prepared and there was lots of food I couldn’t have for fear of infection. But overall it was a small price to pay.

I left hospital at the end of March 2016 and was confined to my apartment until the end of April 2016. Then slowly and cautiously, I began a ‘new normal’ life of medication four times a day. Short walks and avoiding crowded places like restaurants and shops. Meanwhile the search of a donor was going on, unseen and unheard.

In early August 2016 I was told that a 100% match had been found for me in Germany and that the transplant would take place later that month. I was away with three friends on a sightseeing tour when I got a phone call two days before the transplant to tell me it would not take place as planned as the donor was ill. Luckily, I was with good friends that were able to help me over the disappointment.

In September another 100% match was found in another young German woman. I was admitted to hospital and straight into isolation. Then doctors, Dr K and his team, then started the process of breaking down my immune system and bringing me almost to death before infusing the new bone marrow cells. The days before and immediately after the transplant are a bit of a blur as I was fatigued and very unwell. My daughter was with me through some of it but I don’t really remember her being there.

Confined to a small room, with only  two visitors allowed in it was a lonely and difficult time. But I was released after three weeks and confined to the apartment apart from daily visits to the outpatients clinic. Lots of care had to be taken to avoid infection and hospital tests every day to measure bloods and look out for symptoms of graft versus host disease (GVHD), the enemy of transplants.

I was physically very weak but on heavy doses of all sorts of medication especially steroids. These gave me some energy and I slowly got back walking up my favourite mountain, not far from my apartment. Small short walks at first and gradually increasing until the following Easter 2017. I was able to climb almost to the top. That was a real wow moment and sitting at that point with a flask of tea and some sandwiches was magical.

During this time I also started doing 1:1 Pilates and these sessions were an enormous help in my recovery.

There were many times in the recovery in Greece when I wondered if I wouldn’t make it. On two occasions patients in for transplants died on the ward and this had a profound effect on the rest of us.

I was also lucky, that on Dr H’s advice, I found a very good counsellor who I attended regularly during my recovery and she helped me get over several of the emotional issues which affected me.

In October 2017 I was given the all clear to return home – flying had been banned up to then for fear of picking up infection. So 13 months after the transplant and accompanied by my wife Annette I came to continue my recovery but now under the care of Dr C in St James’s Hospital.

I came home too soon and wasn’t right physically or mentally to cope with all the challenges in my life. New home, new doctors, new lifestyle, different climate, getting used to family life and friends again all proved too much for me and I ended up in James’s for a week before Christmas 2017. But great family support and counselling and a return to pilates and walking soon had me back on the straight and narrow. But the medication had its own side effects and I discovered, as did my family, my mood swings were par for the course.

But pilates and walking got me out of myself, got me active and gave me a focus on getting fit again. And so another mountain walk was the target set for December 2018. During this time I learned that bone marrow transplants don’t often take as well in joints as it does in the rest of the body. Knowing this, I tolerated the aching lameness and sore hip joint which activity seemed to help to ease. I also suffered Achilles tendon problems and hamstring problems, both of which took a very long time to heal.

But by December I was ready and on 1 January 2019, accompanied by my daughter and her boyfriend, we climbed the mountain around Glendalough, a great feeling of exhilaration and achievement was accompanied by a very painful hip and so in February 2019 I had a hip replacement as the steroids had led to an 80% degeneration of the joint.

Getting over this has been slow but I’m back walking and plan to climb another mountain before the years ends. I am reminded of a Greek saying “When man plans, the God’s laugh”!!

There is one important thing I feel I should mention and this I think from what I’ve read affects most people who go through an enormous health condition and this is the blow it is to your self confidence. I was always a confident individual and able to manage many projects at the same time and to keep all the balls in the air. But after I returned to Ireland and throughout 2018 I realised that my confidence had suffered a terrible blow and I found it extremely difficult to juggle and cope with day to day living tasks. Making decisions became difficult and a source of stress and worry for myself and those around me. But family support and time has helped me be able to do things again which I wasn’t able to do and that has helped my confidence slowly return.

The road to recovery from AML and transplant is a long and slow one with many bumps along the way. Maybe I’m over the worst of it, who knows, but with the love and support of family and friends I know I will get there in the end!

Thank you so much to John for sharing his story with us here on Happy Magazine.