When Louise Coventry, 56, from Sydney, Australia, was diagnosed with Myelodysplastic Syndrome in April 2016, she was shocked as she hadn't felt unwell. Over the next 18 months she underwent two bone marrow transplants, numerous blood transfusions and a stay in intensive care. She's now six months into her second recovery, making plans for the future with her husband Brett, and choosing not to worry about anything in her 'new normal'.
Louise, during treatment for Myelodysplastic Syndrome in April 2016
A cancer diagnosis can come out of nowhere. Within seconds your future hopes and plans are fractured. Is this really happening? is a common thought. During mine, I felt a numbness take over me. It was impossible to absorb the reality or severity of what I was being told.
My bombshell came on a Friday in April 2016, I’d gone to the doctors for a routine blood test to eliminate the idea of something very minor and totally unrelated. By 10am the following morning I was sitting in a bed in the emergency department being told very little. Frighteningly, the doctor's non-committal comments seemed to indicate something serious. I sat hoping for a mistake at the lab but my additional blood tests didn’t seem to be confirming there had been one. I was admitted that day, still with no real information, and still feeling positive there had to be some kind of mistake. After all, I felt so well and healthy. Two weekends before I’d spent two hours kayaking, and a month earlier I’d ridden in a charity bike ride. But in hindsight there probably had been a few minor indicators. I’d experienced tiredness, sweating, easy bruising, and some bleeding gums, all symptoms that are very easy to ignore.
At 55-years-old, it was my first ever night in hospital. I was restless and barely slept. In the morning the doctors visited and revealed more information. It was the first time anyone had actually spoken about the potential seriousness of my condition. They then scheduled a bone marrow biopsy. At this stage I was more terrified of the procedure than actually finding something wrong. ‘I'm so healthy, this can't be right’, I kept telling myself. I hung onto that denial for quite a while!
A cancer diagnosis can come out of nowhere. Within seconds your future hopes and plans are fractured.
The results of the biopsy triggered an immediate response from the doctors and within days my husband, Brett, and I were hearing the words acute Myelodysplastic Syndrome (MDS). The words ‘serious’ ‘life-threatening’, ‘immediate treatment’ and ‘stem cell transplant’ were ringing in our ears. Brett was devastated and I remember feeling completely numb. Until now we had held off telling my parents (who were aged 78 and 88) hoping to spare them the devastation.
After many blood tests I finally conceded that this was not a lab error and I began to share my diagnosis with family and friends. I knew I would need their love and support to get me through. I was fortunate to be surrounded by the most beautiful, caring and positive people. Every text, email, phone call and visit truly helped when I was struggling to come to terms with my diagnosis. Throughout my treatment, my friends rallied round and supported me in so many loving ways.
The search for a compatible bone marrow donor began immediately, firstly with my brother and sister and then onto the world register. Although we were not a 100% match, it was eventually decided that my sister would be my donor. My beautiful, generous and special sister. My brother was off the hook as he wasn't a close enough match.
I then began three months of a mild chemotherapy to prevent my MDS escalating to Acute Myeloid Leukemia (AML). The chemo was never going to eliminate the need for a stem cell transplant, rather just keep it from progressing further. In September I started the conditioning treatment as an inpatient. Everything I'd ever heard about stem cell transplants terrified me. I heard a lot of ’it's really tough’ but no one seemed to ever be able to answer what this ‘really tough’ looked like as it’s so dependent on how your body responds to the chemo, the radiation, and the transplant. I felt so unprepared, I literally had no idea on what to expect. It was the first time the inner strength of which I've always been quietly proud of deserted me.
I felt so unprepared, I literally had no idea of what to expect. It was the first time the inner strength of which I've always been quietly proud of deserted me.
Then, in following weeks, I started to take ownership of the obvious. No one could do this apart from me. I knew it was time to step up. Reaching this milestone gave me a peace I can't explain. I knew that there were risks but I also trusted I was in good hands with the very best practitioners, My inner strength flooded back. I thought to myself ‘I can do this. Others before me have and so can I. Of course I'll be in the positive percent of survivors. Why shouldn't I?’ My sense of self came back.
This belief never really deserted me, although, at difficult times it did get a little swamped and I needed to dig deeper. Brett gave me a framed quote which sat in my hospital room. It said ‘I may not be there yet, but I'm closer than I was yesterday’. Reading that on hard days helped me to reflect on just how much I had already achieved. It helped me to remember the positives of our situation and that tomorrow was always a new day bringing me closer to recovery and our before cancer life. I so wanted to be well again. I wanted to spend many more years loving this gorgeous man.
Over the first few days, I had all the pre-transplant procedures including a central venous catheter inserted (to administer my medication), plasma exchange, nasal tube and chemo. Thankfully, it all went as expected. On the day of transplant my beautiful sister, Cath, went under general anaesthtic and had her stem cells removed from her marrow in readiness of my transplant later in the day. Again, there were no real problems. Cath and my family were with me and we all held hands and smiled during the transplant. I felt so fortunate to have it. The following days were tough as my white cells and neutrophils were very low and I waited for my gifted cells to graft.
My sister Cath and I as I receive her precious cells via the stem cell transplant
I was so fatigued and experienced intense diarrhoea and nausea. My hair fell out. Eating became near impossible and each feeble attempt resulted in vomiting. As a result, I lost a lot of weight. After a week I had to rely on the feeding tube and had to really concentrate on keeping my oral medication down. I had an extremely sore back due to lying in a hospital bed for so long. I couldn’t sit comfortably or sleep. The doctors had to prescribe morphine, endone and fentanyl but nothing seemed to help so I spent the nights walking the ward with my trusty IV trolley just to relieve the pressure. The nurses joked that I would end up wearing the lino out. I also had horrible nightmares (even when I was awake) so they took me off the fentanyl. It's one scary drug! Thankfully the nightmares stopped.
My inner strength flooded back. I thought to myself ‘I can do this'. My sense of self came back.
In the days following, despite needing many blood transfusions, fluids and other medications, I gradually begin to feel much better. My cells counts started to rise and all the side effects greatly reduced. I only had one fever and infection which I recovered from quickly. After a month my professor said I could go home. I'm was so happy I couldn’t get the smile off my face. To have my own bed in my own home felt incredible. My back returned to normal and I could continue my recovery at home. It felt like the worst was behind us.
Over the next few months things were good. We started to plan our life again, caught up with friends, talked about taking an overseas trips, returning to work and rebuilding my fitness. All the things I took for granted eight months earlier. Unfortunately, at the four month mark the doctors discovered that my DNA was 100% mine – in a successful transplant the recipient (me) changes DNA and blood group to that of the donor (Cath). There was no evidence of Cath's DNA in my bone marrow. The transplant had failed.
20th wedding anniversary! What a way to celebrate.
We were devastated and trying to process what it meant when the professor explained that I would need another transplant! The numbness I felt at the first diagnosis returned, although we recovered more quickly the second time. We were getting good at bouncing back deciding there was nothing else for it other than to step up again.
As difficult as the second transplant was going to be, it was definitely better than the alternative. The wheels were set in motion and although I was dreading it all over again it was a tad easier as I kind of knew what was ahead. I kept reminding myself that it would only be a month (hopefully) of unpleasantness and then I would be back on track.
I was readmitted in March 2017 and my transplant was scheduled for March 22nd which happened to be mine and Brett’s 20th wedding anniversary! It felt like a good omen but definitely not the way we had intended to celebrate. The nurses sweetly averted their eyes as my husband sneaked in champagne and a few friends to celebrate hospital style!
I responded to the second transplant (again with donated bone marrow from my sister Cath) in much the same fashion as the first so I knew I could do it again. Blessedly, my back didn’t give me any pain but instead I developed a serious infection. My temperature hit 40 degrees and my blood pressure plummeted. The doctors explained that I needed to go to intensive care. I'd been so strong until this point so I allowed myself my first tear. I was really really scared. I’d only ever thought of intensive care as a place where people died. I was in for three days and felt truly lousy. The nurses were amazing and made my stay less scary. They assured me with their calmness and nurturing and within days of being treated for the infection, I returned to my ward. It was so weird that the hospital room on the ward, which has felt like a prison before, suddenly represented a haven to return to. Within a month I got the okay to go home again. I was over the moon and just couldn’t wait to start the recovery again.
My husband Brett and I celebrating 5 months after the second transplant
I'm now successfully at the six month mark and I feel almost like before cancer.. My DNA is 98% Cath's and my blood group has transitioned too. ‘Almost like twins’ is now the family joke. We have always been a very close and I never doubted that Cath would be there for me as I would her. That does not dispute my gratitude and overwhelming love for her. The reality of what she has endured for me twice is so very special. She plays it down and says it a given she’d be there for me as I would her but the love, strength and joy of sisterhood is unequaled. I am forever grateful, not just for her lifesaving cells but for the unwavering and indescribable love and support she provides everyday.
The love, strength and joy of sisterhood is unequaled. I am forever grateful, not just for her lifesaving cells but for the unwavering and indescribable love and support she provides everyday.
The love each member of my family share is credited to my beautiful mum and dad who have modelled what unconditional love is. They are our rock, our centre. They sat with me every day whilst I was in hospital and came daily to make lunch and look after me in the first weeks of being home. They were always there for me. And of course my gorgeous man. By my side every day, loving me, encouraging me and believing in me. Believing in our future together. That was so important.
I'm now starting back at work two days a week and Brett and I are planning our trip to Croatia for next year when I'll have the health to travel internationally. Of course, I know that complications or a relapse are possible but I've decided that living and not worrying are now my ‘new normal’.
Do you know someone who has been affected by acute leukaemia?
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