Headlines first: I’ve finished this phase; I’m home again after a couple of inpatient stays (in different hospitals); I’m no longer neutropaenic; and my care has gone back to St George’s, where I’ll need another bone marrow biopsy to confirm how successfully the MARALL trial cleared out the leukaemic cells.
After my last post, you were probably expecting some news a little sooner – and hoping it would be as simple as ‘MARALL trial completed; bone marrow biopsy results clear; remission achieved; proceed to transplant; do pass Go, do collect £200’. Just to prove that you never know what’s going to happen, however, my body bowled me a googly on Day 28, just 24 hours or so shy of finishing this phase, and I’ve spent most of the past ten days recovering from that and the consequences.
It may all have stemmed from a shortage of blood; on the Friday before Day 29, while I was at the Royal Free for some more erwinase, the trials team decided it would be worth topping me up with a transfusion, although my haemoglobin wasn’t technically quite below the threshold. Unfortunately, matching blood isn’t always a fast process – and becomes more complicated the more blood you get given – and as the end of the day unit’s shift approached, there was still no sign of the precious red cells. Given that my need wasn’t absolutely vital (Hb wasv still above 80), the doctor decided it wasn’t worth waiting any longer, and that we should postpone the transfusion until the Monday.
I didn’t quite make it that far, however; after setting foot outside home to stretch my legs with Mariacristina on Sunday (19th Jan), I felt weak and drained. We came back in, where Mariacristina confirmed I had gone pale (and my lips a tasty shade of blue) and I collapsed on the sofa. We called an ambulance to take me to St George’s; upon arriving at ours and checking me out, the wonderful paramedics told me my blood pressure was so low that had I tried to stand up again at that point, I would certainly have fainted. Meanwhile they helped me stabilise and got me to A&E (Mariacristina was very excited to get her first trip in an ambulance), where they started filling me with antibiotics to combat any bug that may have been causing the problems.
Eventually they packaged me off to the Trevor Howell ward – Ruth Myles’s ‘sister’ ward – where I enjoyed a couple of days being pumped full of blood, fluids, antibiotics – as well as painkillers to ease my bodily aches (including rather too much Oramorph for my body’s liking, as it turned out). I was soon feeling okay, and my temperature was fine, so by then I was most concerned about my progress with the trial treatment. There still seems no unanimous agreement on what happened on Sunday, but the leading suggestion was anaemia (if only that blood had arrived on Friday!), although it’s possible I had some infection that didn’t cause me to spike a temperature but was enough to knock me out.
When we got home, however, it started to become clear that the – ahem – blocking side effects of the Oramorph had kicked in. Having not managed to go to the loo since Sunday, by the time I got to Thursday, I was feeling extremely uncomfortable, to the point of throwing up when I tried to eat and drink something but my bowels just couldn’t accept anything new… With my bone marrow biopsy reorganised for Friday (but Monday’s antibodies dose cancelled), I was due up at the Royal Free anyway, which fortunately gave me the opportunity to see doctors and beg them to, erm, clear me out. Given the difficulty of knowing what to do at home, we jumped at the opportunity for me to be admitted as an outpatient, so I spent from Friday until yesterday (Tuesday) in a spacious room overlooking parts of Hampstead – quite a change from the grey hospital buildings seen out of the windows at Tooting… Happily, an aggressive course of medicines got things moving inside me, and I was soon much more comfortable – a huge relief and boost to my wellbeing.
Meanwhile, it was decided it wouldn’t be worth having the cancelled dose of antibodies, so I had effectively completed the MARALL trial. I also had a G-CSF injection to boost my (already fairly strong) blood counts, which shot my neutrophils up to a remarkable 2.5 – for the first time in three months I’m not neutropaenic, and have of course already made the most of it with takeaway pizza and a visit to a Vietnamese restaurant… It was surprisingly liberating not to have to wear a mask around the public areas of the Royal Free, too.
By Tuesday, I was feeling much better in myself, and Dr Fielding was delighted to see they’d managed to ‘patch me up’. My biopsy results were unfortunately too dilute to give a definitive answer as to whether the trial has got me into a full remission or not – although what could be seen was encouraging – so I’ll need another next week to give a more comprehensive picture; however Dr Fielding decided things are looking positive enough to send me back to the care of St George’s.
I’m now waiting for the call from St George’s, but am meantime enjoying a new lease of life (I’ve even managed to write a blog post!) and a lack of neutropaenia… Cinema tonight?