As part of Carer’s Week I have written a blog for Leukaemia Care sharing my experiences during my husband’s treatment for Acute Lymphoblastic Leukaemia in 2017. It has been incredibly challenging to write due to the personal nature of the content and the suppressed memories that it brought back. The resulting blog ended up being too lengthy to release as one post so it has been split up into 5 sections to release throughout Carer’s Week.
Part 1 covers the diagnosis.
The 28th December 2016 is a day which will be forever etched in my mind; not because it was our beautiful daughter’s 3rd birthday, but because it was the day my husband was diagnosed with acute lymphoblastic leukaemia (ALL).
Martin had been complaining of ‘not feeling right’ for several months prior to this with pains in his chest, pins and needles in his arm, feeling really hot and sweating, random aches and pains in his back and shoulders, tiredness and headaches. These symptoms didn’t all occur at once but kept changing, which made it all very confusing. He kept going back to the doctors, but they thought he had a virus or had pulled a muscle in his back from all of the labouring he had been doing whilst landscaping our garden. In the end, his continued low white blood count rang alarms, which led to a blood sample being sent to the local haematology department and to the diagnosis of leukaemia, a form of blood cancer.
My emotions were complex during those first few days. First came the incomprehension, quickly followed by feelings of powerlessness and sadness that our lives had inadvertently changed and that we were now at the mercy of our wonderful healthcare service.
So many things were happening in such a short space of time. We had to tell family and close friends. Tell work. Most importantly of all we had to decide what on earth we were going to say to our then three and five-year-old children. It was a surreal time during which we were trying to understand what the diagnosis meant, what the treatment involved, what all of the terminology meant. Our lives were galloping out of control. The doctors were planning the treatment schedules, signing Martin up to take part in research trials and talking about PICC lines, stem cell transplants, and different treatment pathways. At the same time our families were getting organised into battle positions, planning how they would help, what we would do for money whilst Martin was unable to work, who would have the children each weekend. It was all too much to process.
Our priority during that first couple of weeks was keeping everything as normal as possible for the kids. We would go to the hospital, hear all about the diagnosis and the reality of what it meant for us and then know that we had an hour to ‘sort ourselves out’ before returning home and being strong in front of the children. It was only on the rare occasions when they were out of the house that either of us had a chance to express our fear, talk about what on earth we were going to do and cry about how unfair it all was.
I went on a mission trying to plan for the treatment and making changes around the house. I decorated our bedroom so that Martin would have a nice space to go to when he was feeling too ill to interact with me and the kids. We bought an iPad so that the kids could Facetime whilst he was in hospital as an inpatient. We plotted out how we would cope financially and when Martin would be able to return to work. In hindsight I can now see how futile all of this was but at the time it gave us the false sense that we could still control some element of our lives.
Treatment began on 10th January 2017, one day after Martin turned 36. We both approached the day as if it was just a challenge to get through. A ‘batten down the hatches’ approach with a confidence that Martin would be one of the ‘lucky ones’ who went into remission after the first phase of treatment and wouldn’t need a stem cell transplant. It was a sad feeling leaving him in hospital on that first day as an in-patient amongst the chaos of trying to find a PICC line that would fit him and unsure of whether a bed would actually become available on the ward. I was acutely aware of how lucky I was that I could go home whilst he was stuck on a strange ward with people he didn’t know, kept isolated from the other patients.
I think it was on that day that it truly sunk in that Martin had cancer.
As is the way with these things, it wasn’t Martin’s fate to be in remission following the first round of intensive chemo. The team at the local hospital seemed as devastated as we were when they had to deliver the bad news, but there was no time to dwell on it. A few days after the results, Martin was back in hospital for the second phase of treatment in the hope that this one would do the trick.
It was during this second phase of treatment that the accumulative effects of the chemo were starting to take their toll. Martin was in the hospital almost daily either for chemo, bloods or platelets, and it was heart breaking to watch him endure so much with so little complaint. The constant appointments, the fatigue, the sickness, and the myriad of other side effects which left him increasingly broken. And as if that wasn’t enough, in the background there was always the feelings of guilt. My husband felt guilty for being diagnosed with cancer and for putting us all through it. Little did he understand that I couldn’t have been more grateful and proud of him for being so strong; I could never have endured what he did with so little complaint. I, on the other hand, felt guilty because I couldn’t be everywhere at once. I wasn’t supporting my husband enough, I wasn’t with the kids enough and I couldn’t keep up at work. I was worried about Martin, the children, the future and money but there was no time for all of that as we had to get through each day as best we could.
As the weeks went by it was getting harder to cope. I remember times of dropping the kids off and then sitting outside in the car crying before pulling myself back together and carrying on either to the hospital or to work. I started the pretence of showing the world that I was strong enough to cope and that I could hold it all together, but this just led to the feeling of being totally overwhelmed and so, so lonely.
With the help of an online support group, I realised that I needed to learn to ask for help. I had so many people making offers, but I felt bad for accepting, even though I knew they were being genuine. It sounds like the easiest thing, doesn’t it? Simply asking a loved one for help. But I found this incredibly hard. Before Martin’s diagnosis I liked to think of myself as the one who helped others, not the one needing support. I’d like to say I mastered the art of telling family and friends what we needed but I don’t think I can ever claim that, but I did start to try and accept offers of cooked meals, help with getting the kids after school and help walking the dog. I don’t think I could have coped with the first few months of treatment without the support of friends and family in getting through the day to day, or the support of the online group where I could ask questions and express my fears and emotions without worrying about being judged.
After the second phase of treatment, Martin was completely drained. I couldn’t see him coping with any more unless he got some respite, but we had no money to pay for the sort of break that he would need due to the levels of fatigue he was experiencing. Luckily, this is where the amazing Willow Foundation came in; a charity specialising in providing special days for people under the age of 40 with a serious illness. I approached them at the last minute as there was only ever a one to two-week window in-between Martin’s treatment schedule. I was amazed when they managed to pull together a two-night stay at a nearby luxury family hotel so that we could spend time together as a ‘normal’ family and regroup. The holiday fortified us, but we returned to yet more bad news; not only was Martin still not in remission, but there was now evidence of myeloid cells. This led to a re-diagnosis of acute undifferentiated leukaemia, which carried with it an even poorer prognosis.
You can read part 2 here.