My “New Normal” really began in September 2017 when I walked, slightly dazed, out of my doctor’s surgery at the end of a busy work day. Routine blood tests due to joint pain and menopausal symptoms in the previous July (“your white blood cell count suggests you’re fighting something”) had turned into a discussion about a chronic form of Leukaemia. Like most people, the L-word sent me into a flat spin. How could the doctor suggest this from just a few blood tests? I arrived home to share the news with my husband and we spent the rest of the evening getting our heads round this condition we’d never heard of! Thankfully we like to read and understand things, so it wasn’t long before we realised that this was a chronic condition and wasn’t an automatic route into chemotherapy, hair loss etc. I had so many thoughts, about when or if I would get a formal diagnosis, but mostly about how to tell our grown-up kids about it without worrying them too much.

I moved to three-monthly blood tests with the GP, which saw my lymphocyte count rise steadily, followed by a referral to haematology and formal diagnosis in June of 2018. By then I had read as much as possible about the amazing world of cell biology relating to CLL and had of course become familiar with the concept of “Watch and Wait”. I was still working extremely hard in two different job roles and, apart from a tiny raised lymph node behind my ear, hadn’t felt too much had changed. It was at this time that I started a journal, mostly to keep a record of my consultations, but also to record my thoughts and feelings as time went on. I gave my journal the title of “The New Normal”, not knowing that this phrase would be used so regularly and so poignantly in the years of the global Covid-19 pandemic we are still experiencing.

Gradually we started thinking about making some big changes in the way we were living. Our children had grown up and moved away to other parts of the country, I loved my work, but was working too hard and starting to feel more fatigued, my husband Nick was considering retiring from the teaching profession, we had always thought about moving north to be nearer our eldest daughter, son-in-law and granddaughter as well as Nick’s family….. Was it the right time to make these big changes? We started to put a possible plan together, spending a lot of time discussing it over a dinner and a drink at the pub, creating endless spreadsheets to see if we could afford to retire early, thinking, planning, imagining, dreaming. Thirty-four years of a life in one place isn’t easy to unpick, practically or emotionally, but we eventually decided that summer 2020 was the time we would aim to make it happen, little knowing what 2020 would bring to everyone’s lives.

As faithful people we started praying that the paths we were to follow would become clear and gradually things took shape. Resignations were handed in, succession planning was put in place, we started sharing our plans with our family and closest friends, and we began the mammoth task of sorting the house which had been our family home for 25 years. Amazingly, during the first lockdown due to the pandemic, we managed to secure a buyer for our house (someone we knew) and we found our new home in a lovely village east of Leeds, following a virtual viewing. Buying a house without setting foot inside it wasn’t part of the plan, but we felt peaceful about it and convinced that this we’d found what we were looking for.

Now, six months later, I look back and can’t believe we actually did it. As I sit looking out on the village I’ve grown to love, I’m so grateful that our plans worked out. Of course there have been the disappointments of not being able to visit family or have people to stay. I would’ve loved to have joined in with local events and coffee mornings to get to know my fellow villagers, or to find a local church. That will all come in time of course, so for now I’m just adjusting to this new normal and being thankful for social media to connect with people. It’s been a relief to find excellent local GPs and consultant departments, particularly as an increase in the size and number of swollen lymph nodes in my neck suggest treatment might be sooner rather than later. More about the physical and emotional aspects of that another time. For now it’s just time to settle into this “New Normal”, the bits we predicted and those we didn’t.

I hope you will join me as I explore a few themes that have emerged during my journey in the last few years, as I find a way forward, not just to survive, but to really live.