My leukaemia journey spans over 20 years, as bizarrely, both my husband and I have been diagnosed with the disease; Mark in September 1997 with acute lymphoblastic leukaemia (ALL) when he was almost 37; and myself in May 2017 with acute myeloid leukaemia (AML). I was 52 years of age.
In 1997, Mark and I were living in London. Mark was suffering with a painful back (a pre-existing problem and therefore not initially considered a concern). The pain then transferred to his neck, almost like a whiplash injury, and at this stage he also had a temperature which resulted in a visit to Accident and Emergency. Our daughter was only 20 weeks old and we stayed with Mark in the department until later that evening when he was admitted to a ward for further investigations. As a Registered Nurse, and although the medics hadn’t initially suggested anything sinister, I was starting to grow concerned; his haemoglobin was low and tests including lumbar puncture and bone marrow aspiration were being carried out, and I knew the significance of these investigations.
After three days, we were told that Mark had ALL and that chemotherapy would begin soon after. The shock, as anyone will know if they have received unexpected life-threatening information, was unimaginable. Mark was otherwise healthy and until that time had not presented with any symptoms consistent with the disease, and it seemed incomprehensible that this could be happening. So began two years of intense chemo, cranial radiotherapy and finally maintenance therapy in tablet form.
Apart from the obvious horror of the treatment, side effects and ongoing worry, we faced the dilemma of whether we would be able to have more children in the future. Mark’s fertility was discussed, and we were advised to freeze some sperm prior to the start of treatment. Our lives were suddenly catapulted from being a happy new family of three, to what seemed like an endless nightmare of ‘not knowing’ and ‘what ifs’. It had also thrown into the equation the reality that our dream for a larger family might only be a faint hope, which seemed unreal and yet another hurdle, albeit for the future.
Mark’s treatment progressed, and despite the long, gruelling and relentless ups and downs, he made good progress and remained in remission for almost five years when he relapsed and went on to have an allogeneic bone marrow transplant at the Hammersmith Hospital. None of his three siblings were matches for a bone marrow transplant and therefore he had the full course of chemo. His transplant was successful (a 10/10 unrelated donor was used).
Our daughter was almost two when we decided to try for another baby, following the IVF route. Mark was well and on maintenance therapy and had returned to work. To our delight, I became pregnant on our first attempt using the frozen sperm and our son was born in January 2000; an amazing start to the Millennium and, after the terrible time we had been through, we were so thrilled to have some joy once again in our lives. I must admit that we felt truly blessed at having our little family and, although we would have liked more children, we were realistic enough to know that this would probably not happen.
However, just prior to Mark’s fortieth birthday, I suspected that I might be pregnant and a scan soon after revealed I was indeed pregnant – with twins! We had conceived naturally and, 15 months after the birth of our son, our non-identical boys arrived to complete our family. The challenges of the past few years were now replaced with a different scenario; having thought we may not have more children, we now had four under four years of age! I feel our experiences may help or at least give hope to others who may, amongst other things, be worried about their fertility and the ability to conceive post- chemo.
However, in 2017, I received my own shocking diagnosis. As in Mark’s case, I was fit and well, albeit older – I was 52, but had no symptoms or indication that anything was wrong. I had visited my GP with two small red marks on my fingers, and although the doctor did not think they were cause for concern, he did refer me to a dermatologist and also took blood for base line observations. (We learnt in due course that these blemishes had nothing to do with my diagnosis). That evening a locum GP called to tell me that my blood results were abnormal and the next day I was diagnosed with acute myeloid leukaemia (AML).
This cruel blow that had been dealt us for a second time was both shockingly painful and unbelievable. Our lives had taken a back seat to this illness for so many years and now, once again, it had reared its ugly head and seemed prepared to inflict the same horror again.
And so began my treatment; four courses of chemotherapy over six months. My only sibling was not a match for what is referred to now as a stem cell transplant (SCT) and so, as with Mark, I completed the treatment and was in remission. However, in early 2018 blood results showed evidence of dysplasia cells, suggesting myelodysplastic syndrome (MDS). This blood condition may have been present prior to my diagnosis (30% of people with MDS go on to develop AML) or it could have been a result of the treatment and there was a chance that it would disappear and the awful term ‘watch and wait’ was applied. However, my blood counts never really recovered and at times I was verging on being neutropenic again. Together with my haematologist we pushed to go ahead, sooner rather than later, with an allogeneic SCT. It seems an odd thing to want to do willingly, as obviously the risks involved were high and there were never any guarantees of cures or indeed survival, and that remains the case today. However, I knew that at some point in the near future a transplant would be necessary, and it would be better to go ahead whilst I was reasonably well and still in remission from leukaemia. Also, I wanted a chance to have a life again and this was my only realistic option. Hence, in August 2018, I had my transplant at Derriford Hospital in Plymouth.
As it was for my husband, the regime was brutal. I was in hospital longer than was anticipated as I was very weak and suffered badly with the side effects of the chemotherapy. The weeks and months following were a huge challenge. Readmission for reactivation of the CMV virus was expected but nonetheless a depressing setback. Strangely, despite all the other times I had been in hospital, this one was particularly hard. The regional hospital in Plymouth was a four-hour round journey by road and separation from my family was difficult. Discharge dates were constantly put back and resolution never seemed in sight. At my lowest times, I feared (illogically) that all my children would remember was a poorly mother. The constant ‘not knowing’ regarding outcomes never gets easier and each doctor’s visit a trial; good news lifting you until their next daily visit, but bad news making the already torturous situation a never-ending struggle.
However, 10 months post-transplant I remain in remission. I am certainly getting stronger, although fatigue is a constant gripe and I take each day as it comes and respond according to how I feel each morning. Thankfully, I am able to rest when I need too, which is often, and I continue to be monitored every four weeks both at Plymouth and more recently at our local hospital in Truro.
Our children are now 22, 19 and 18, and it does seem incredible that they have lived their whole lives with parents who have undergone such traumatic illnesses. The uncertainty is tough, although this is something that neither Mark nor I have ever dwelled on. ‘Being positive’ and ‘staying strong’ are phrases I admit to having used myself to others, but since my diagnosis I’ve realised that, although these sentiments are well intended, they are in fact quite meaningless; sometimes you just can’t be strong anymore and drawing on positivity is difficult when bad news is potentially looming.
That is not to say that I am a negative person, but I think one has to be realistic. There are no guarantees or magic wands. At my darkest times, I would kid myself that as long as I was eventually well again, I could bare anything.
When we were diagnosed, neither Mark nor I presented with any obvious symptoms associated with a blood disorder – nose bleeds, tiredness and excessive bruising being some of the obvious. Also, being a Registered Nurse, I am reasonably aware of health issues but was never alerted to any problems. The fact that we have both gone on to have bone marrow/stem cell transplants for leukaemia is staggeringly unbelievable and I would imagine statistically highly unlikely. I joke that perhaps our luck must surely change soon and that I should buy a lottery ticket, but of course luck plays no part and we have never pondered on the ‘why me/us’.
I would encourage anyone who is eligible to become a stem cell donor to do so. The registration process is simple and painless and the thought that you may save someone’s life must be amazing. For Mark and I, two anonymous people offered us the chance of life and for that we will be forever grateful.