Patrick visited the GP for a routine blood test, which later led him to his shock acute promyelocytic leukaemia (APL) diagnosis. Having received his diagnosis at the start of the first COVID-19 lockdown, Patrick had to adjust from living in a busy Monastery to self-isolation, both in and out of the hospital wards. Here, he shares his Spot Leukaemia Story…
“I went to the GP for a routine ‘MOT’ blood test. They called me after to tell me my white blood cell count was incredibly low – in fact, all of my blood counts were below range. Since this was the start of the first COVID-19 lockdown, I was advised to self-isolate immediately, because my resistance to any infection would be very low.
I am a Benedictine Monk in a monastery of 20 monks. Because of COVID-19, our 18-bedroom retreat house was unoccupied, so I was given the use of that for my isolation. My fellow monks organised a rota to bring me a hot meal each day from their refectory.
I had a second blood test, which then confirmed the very low blood count, and my GP referred me to the local hospital for a bone marrow biopsy. I got to the hospital, and they took some more bloods, however, they didn’t have time to do the biopsy. Initially, they admitted me overnight to an isolated room off a ward, but as they were so afraid of the elevated risk of COVID-19, they sent me home and asked me to report to haematology early the next day.
I met with the haematologist, who talked about the possibilities whilst taking the biopsy – including the mention of the “frightening word leukaemia”. She sent most of the samples off to the Royal Marsden for a detailed analysis but kept a few slides she could analyse within the next 24 hours.
The next day, I was just finishing my main course of lunch when the haematologist rang to tell me that the Royal Marsden had confirmed her provisional reading of the biopsy. My diagnosis was acute promyelocytic leukaemia (APL).
I don’t remember much of how she described what it was, but she insisted it was urgent for me to find someone to take me to the hospital, as they would have a bed waiting for me. This was quite a surprise! I asked how long I was likely to be there, and she replied “at least a week.” Little did I know that it was to be over five weeks!
Having no idea if I was going to be allowed out in the fresh air or not, I threw all sorts of clothing into my packing. My Abbot (the boss) took me to the hospital that afternoon, which happened to be Maundy Thursday; the first day of Easter Weekend, which is usually quite busy in our Abbey Church. Yet again, the COVID-19 lockdown meant no parishioners were allowed to attend, so it was quite a strange Easter weekend for all of us – me in particular.
The Abbot was not allowed further into the hospital from the reception desk, so deposited me and my bags there to await someone from the ward to collect me. Thus began the whirlwind (or so it seemed to me) of unfamiliar processes as I was sucked into the hospital ‘machine.’ I was intrigued to find my walking gait was observed and noted on the way to the weighing machine.
A senior nurse took my medical history, gave me a pack of information (including some highly informative booklets from Leukaemia Care) and asked me to sign three consent forms. One was for a PICC line, which I had to ask what it was, another being for tretinoin or ‘all trans retinoic acid’ (ATRA) pills, and arsenic trioxide as my chemotherapy. This triggered thoughts of the film Arsenic and Old Lace!
I remember asking at some point what would happen if I did not consent to any of these and I received a reply that didn’t immediately sink into my flustered brain. If I did not consent to this treatment, I would be dead in two weeks. Ouch! It dawned on me slowly that this must be serious and yet somehow appropriate for this Easter Weekend, when matters of life and death are made explicit in all our church services. So, I consented to everything.
I arrived at about 4 pm that day, and the PICC line was successfully inserted at the second attempt; blood tests were then taken, ATRA pills were taken, and I was shown to my private ensuite room. The blood test results showed I needed more potassium before I could be given the arsenic and each infusion would take an hour or so. So, my last treatment ended at 3 am on Good Friday morning.
Of course, hospital routines start at 6 am, but I did enjoy the delightful surprise of a full-cooked breakfast! Apparently, good food is part of the healing treatment, and it was much appreciated. I was told that I would also be on a neutropenic diet, meaning I would be avoiding any possible infection from the skins of fresh fruit.
The consultant visited me midday and explained a few things, however, I was not only a bit sleepy but somewhat confused. It was an overload of unfamiliar medical terms about an illness that I had never heard of and for which I had no symptoms, which could kill me very rapidly. He introduced to me the idea of five, eight-week cycles of treatment for my APL, which befuddled my brain. I gradually began to understand that this would be a very long time – a lot longer than the “at least a week” in hospital that was suggested originally.
Within a couple of days, I developed a cough and an elevated temperature, which could have been either COVID-19 or a side effect of the arsenic treatment called differentiation syndrome. I took a COVID-19 test which came back negative, so I got to understand the other phenomenon. There followed days and nights of oxygen, tests, x-rays, ultrasounds, and duty doctors finding counter treatments to all my odd symptoms arising from this treatment, rather than from the illness itself.
After four weeks of being in my private room, I was encouraged to take some exercise outside in the fresh air. I had been encouraged to walk the length of the ward corridor before then, but the fresh air was delightful, despite the fact it took me a lot of effort and puffing to walk up even a gentle slope. It was an achievement to be able to walk right to the top of the hilly car park and back again a few times each session.
My daily blood count figures were slowly going up and I was promised a discharge to home when my neutrophils reached 1.0. This was achieved five weeks and one day after my admission. I was sent home (or at least to my 18-room hermitage) on my own, on a Friday afternoon with a set of 11 different pills and daily self-injections. I was told to report back to the hospital twice a week for the next few weeks to continue the arsenic infusions. There was a two-week gap between cycle one and two with no pills or hospital visits; what a relief!
At the conclusion of my final arsenic infusion, I was invited to ring the bell and thank all the hospital staff for their dedication to my treatment over the previous nine months. I completed the treatment on 23rd December 2020, right in time for Christmas celebrations. I had a blood test and consultation after one month, then four months, then six months and now 12 months. All results are indicating a pristine blood count and that I am ‘probably cured.’ This will go on for five years before a final discharge.
Spot Leukaemia is important as none of my colleagues or friends had heard of such a thing before; now they are aware that it can strike anybody at any time for no obvious reasons. I remember seeing a diagnosis of Leukaemia in an episode of ‘Call the Midwife,’ when it was too late to save the unfortunate mother. I ‘spotted’ the symptoms before the doctors pronounced it on screen. I may have had no symptoms, but the importance of taking regular blood tests is highly recommended!”
Do you know what the six most common signs and symptoms of leukaemia are? They are:
Shortness of breath
Fever or night sweats
Bruising or bleeding
Are you currently experiencing any of these signs and symptoms? If so, contact your GP and ask for a blood test.
Early diagnosis saves lives.