chat
This story is about having a blood cancer while carrying on at work.
I’m an Architect. I have spent my career planning for design challenges on projects ranging from airports to skyscrapers, always on the go, always a step ahead of what needs to be done, anticipating problems and taking advantage of creative opportunities.
Chronic lymphocytic leukaemia (CLL) in its early stages is not the illness for me. No planning seems possible. No adjustments seem to make a difference. It is what it is: a sword of Damocles.
In this age of preventative medicine, I have often wondered about the wisdom of “watching and waiting” for a disease, of which we still know relatively little, to progress until “the time is right”. No medical professional is able to tell you, or will say, what the threshold or the trigger for treatment is. It depends. It is a multi-factorial decision that takes account of lymph nodes, their size, your age, prognostic markers, and lymphocyte count. When the threshold is reached, the treatment is chemotherapy.
My mother aged 75 was diagnosed last year with multiple myeloma, which progressed into plasma cell leukaemia and eventually swept her away. I was by her side, watching her undergo nine rounds of chemotherapy, suffer its side effects, go into remission and then give up when her disease came back stronger than ever, too weak to even take her medication. I am no fan of chemotherapy. So, what are we actually waiting for?
I was in full-time employment once. Work is work and my employers were made aware of my condition. Under the Equality Act 2010, they have a legal, if not moral, obligation to make all possible adjustments so that I may perform my job. Regardless, work comes with the usual trimmings. Deadlines, pushes, grumpy clients, impromptu meetings at ungodly hours in foreign countries, all delivered with smile and courtesy. The understanding of and tolerance for the day-to-day effects of CLL wears thin against the cold face of business performance. A deadline is a deadline. Colleagues, absorbed by the passion of their work endeavours, are quick to forget that you are quietly struggling to keep up. In fact, you become quiet, the first symptom of hanging on. “Put-up and wait” it should be called. Or leave if you can’t bear it…
I used to run my own business. It was so for many years until the 2009 recession came along. I went into teaching, which I enjoyed enormously, but I kept catching a variety of interesting viruses, indigenous to UK universities. I initially put my fatigue down to the bugs and the teaching routine. I eventually left the job to try to re-energise myself, thinking that it was all in my mind and that what I actually needed was a new work challenge.
In February 2012, I took on a big job with a big firm in the big city. In August that year I was diagnosed with CLL. I had been complaining of flank pain (still on-going) and did not expect a blood cancer diagnosis. The GP did not actually use the C-word and, having handed me a generic pamphlet, told me that the disease was indolent and that I would probably never need treatment. Having googled it, the reality of the diagnosis dawned on me: slow, unpredictable, incurable.
I decided to tell work, thinking that I would get empathy or understanding, or both. I know now, six years on, that it is hard for others to understand. I struggle myself to make sense of a cancer diagnosis which is not being actively treated. Watching the campaign ads and posters about catching cancer in time makes me realise that blood cancers are not of the standard variety people are familiar with. So, for my colleagues at work, knowing the news of my chronic condition, it was business as usual after a while. I tried to make it so for myself too. Of course, my body wouldn’t have it and the fatigue got worse over time, so I eventually resigned.
I returned to freelance work. This gave me control over my time and energy levels, creative space reconnecting with things I liked and, above all, a sense of control over my destiny. Blood tests came and went, with the white blood cell count steadily climbing, but without any dramatic impact on my condition. As advertised, my CLL remained indolent and slow. My haematologist would always say that everything was stable and that any other symptoms I had mentioned, such as frequent infections and eczema, were not related and that I should be able to lead a normal life, whatever that meant.
In November 2017, my mother died of plasma cell leukaemia. I was there for her during the entire year she was in treatment and this took me away from my work, my family life and from looking after my own CLL. I felt that in the aftermath of a very trying period, I should return to full-time paid employment to find stability. I accepted a job offer and then immediately turned it down doubting my ability to perform at that level on the grounds of my CLL. However, my prospective employer convinced me that adjustments would be made, schedules would be altered, days off would be offered and that there would be flexibility.
I ended up resigning.
The fatigue combined with other new unrelated symptoms had made my days at work a misery and, despite the interest of the job, I could not keep up with my team mates. I spent all my time catching up on unfinished work, becoming grumpy and demoralised as a result. A colleague of mine, having learnt of my condition, approached me to say that he too had had cancer, which was successfully removed, and that I’ll be alright too. Although adjustments were made, such as taking a day off midweek, it had no beneficial effect. In fact, it added to the stress by breaking up the work routine and my concentration on “hanging on”.
Stress is no small component of any disease, let alone a chronic one, and when you add work pressure on top of it, you have a double-whammy. I try to stay calm. At work and at home, a lot of it boils down to acting normally, pretending that all is normal. In doing so, normality is restored for all, except for you, who are constantly internalising the fight against cancer.
The irony of this story is that the focus of my work is workplace design. That is, deciding and configuring what makes for a good environment, supportive of work and wellbeing. I could not figure out how to do so for myself. I will be returning to freelance work, hoping to be energised by that and with a firm commitment to focus on a health routine involving exercise and diet. We shall see.
My hope is that this article will put an emphasis on the need for colleagues of working leukaemia patients across the UK to better understand the emotional turmoil that accompanies their condition and that blood cancers, while invisible, are truly there. Untreated does not mean cured.
Giuseppe last shared his story with us in 2017. Four years on, he’s updating us on how he’s coping with his diagnosis of chronic lymphocytic leukaemia.
Giuseppe – Then
In some ways, I should be grateful that my disease has not progressed and that I haven’t required treatment since my diagnosis. Nearly ten years have gone by since then. However, my symptoms have worsened, and the Watch and Wait “non-treatment” feels like it’s a copout. Symptoms have included fatigue, various aching lymph nodes, poor sleep, and weight loss, all which have been severe enough to hamper my quality of life and ability to work. It turns out that my current haematology consultant does not consider these as related to the chronic lymphocytic leukaemia (CLL) and neither can my GP find alternative reasons for them.
Giuseppe – Now
So, I’m left, like many other CLL patients, under Watch and Wait, waiting for things to get worse so that I may finally see some action, yet hoping that it will never come to that…
I do wonder what the point of an early diagnosis is if prognosis and treatment are sketchy and uncharted. In my experience, few GPs understand the disease progression or symptoms. CLL is the invisible disease, not just for the public but in some ways, as during Watch and Wait, for the medical profession; out of sight, until threshold criteria are met.
However, Spot Leukaemia can help raise awareness of the sense of loneliness and abandonment that the absence of any treatment while cancer is progressing can cause an individual. A leukaemia diagnosis can have a huge impact on mental health, and COVID-19 has made it much worse as it has added another layer of uncertainty.
For me, the biggest challenge has been to face the reality that a diagnosis at the age of 48 has meant that a full working life is no longer possible, and yet retirement is not desirable nor feasible. Most co-workers find it hard to understand your state of mind, and this can damage your mental health in that it either isolates you or forces you to pretend that “all is well”.
Coming to terms with CLL mentally is the foundation of the ability to cope with whatever follows diagnosis. I have not been impressed by NHS mental health counselling services, and neither have private psychiatrists been of any help. I would rate Maggie’s Centres highly in that they provide a patients’ forum in a relaxed setting.
I now realise that a big element of a CLL diagnosis is the ability to mentally cope with the journey. While friends and family may be of support, a doctor with good bed manners and a skill for listening and understanding is what is needed.