Chronic lymphocytic leukaemia (CLL) - one man's journey (Part 2)

In part one we discussed my general deterioration in health up to 1st April 2021 and a telephone consultation with my GP which led to a chest X-ray and a blood test at 08:50 on 14th April. We pick up the story at about 6:00pm on the evening of 14th April.

Before we start I think it's important to say I've never liked the idea of going into Hospital as an inpatient. I think this comes from observing my mother toddling off to hospital a couple of times seemingly quite fit only to look particularly unwell by the time we went to visit her the same day; I think there's also something about not being in control and knowing once you're in it's difficult to get out.

Either way I was about to face my demons!

Back to the 14th April. At about 6:00pm, one glass of wine into dinner, I received a 'phone call from one of my GP's colleagues telling me that she had already seen the blood test results and was very concerned. She had reviewed the results with one of the doctors at Gloucester Royal Hospital (GRH) and they wanted me in the GRH AMU that evening for a blood transfusion.

I tried a few diversionary tactics - basically can't it wait until the morning - but I was told that as the normal red cell count for a man is 133, the take action level was 77 and I was at 55 they wanted me in straight away. (A nurse later told me that 55 is the level where they ask people "how are you still managing to walk!?) So sensing it was serious I set off for the hospital.

After arriving at the GRH, and we won't say any more about the chump who managed to catch the back of my wife's car as she was dropping me off, there was some confusion as to where the AMU was located (not helped by the ongoing building works at the Hospital) but after a bit of investigation and walking around the hospital (why does walking past A&E always feel so dangerous?) I was told what I was actually looking for was the Gloucestershire Priority Admissions Unit (GPAU) which was a part of the Acute Medical Unit (AMU). The AMU is located on the first floor at Gloucester which meant climbing four flights of stairs so I was pretty whacked by the time I reached the top; one nurse did say later didn’t you see the lift?

When you've been phoned in the middle of tea and told to get to the hospital urgently you sort of expect them to be waiting for you; but no there's always someone who is a more urgent condition that you. I was told to sit in a socially distanced corridor and someone would come for me. There was a tiny "press bell and wait for nurse" that I pressed once gingerly without any obvious response. What I noticed when an orderly pressed it was she kept pressing until she got a response. (Later on when I was in GPAU I realised that the bell made a real racket inside the unit and yet the staff were still capable of ignoring it). If you take just one thing away from this blog it's to keep pressing that bell button until someone comes to see what you want.

I'm told I have good veins
Cannulation
©Harvyewetdog

At least the orderly pressing the button made the staff realise I was there so eventually I was admitted into the isolation cell. I was tested for Covid (twice one quick and one in slower time) and had my cannula fitted and my second blood test of the day taken before admission was completed 2 hours after arrival. (I imagine this test was to get a cross match on the blood). One thing on the Covid test; I've had tests in hospital twice now and the one up the nose really hurts when done properly. What with that and the difficulty of chasing your tonsils in a mirror makes me wonder how effectively the home testing kits are actually being used. 

My ECG taken by a young man who had a real fight with the paper in the machine; it took me back a few years to fighting with chart recorders. It would have been quite funny if it wasn’t so important. Apparently my ECG was good.

At some point I was taken off to X-ray; although I insisted I could walk and that nobody had said anything about an X-ray I was ceremoniously pushed down to X-ray only to be told that I wasn't booked in for an X-ray; “Computer says no”. The nurse accepted that I was registered for a CT scan but that wasn’t going to happen tonight; lots of talk about “protocols” but ultimately it was a wasted trip.

I settled into the GPAU which I sensed was a new departure for the hospital, perhaps a post Covid initiative. It had a very forming and storming feel to it. Their target appeared to be to get people through the unit in 4 hours; it was very noisy with lots of comings and goings, a baby crying, and various buzzers (and that door bell!) constantly ringing. Sleep was not really possible which didn’t really matter as I was waiting for transfusion.

And so dawned the 15th April (which was my birthday!)

I spoke to the night cover doctor and the first transfusion started at 05:00. The transfusion took 3 hours which meant it ran into shift changeover whereas if they’d started at 04:00 they could have started number 2 before the change of shift. I'll probably come back to this but one of the things that struck me during my stay was the focus of simply doing the next thing in my treatment rather than taking a holistic view of how to get the patient as quickly as possible through the hospital.  

But the professionalism and care was there and the nurse made it very clear that a transfusion can create an adverse reaction and that they would check back after fifteen minutes. I was to press the buzzer if I felt any pain or reaction which thankfully I didn't.

The second transfusion started at about 09:00 and then I saw the ward doctor. He was very business like and pretty positive. The doctor explained that it was down to my bone marrow to manufacture the red cells and that this process was most likely compromised. He was not too worried about my neck lumps which he described as flexible, but he observed my skin was pale. He expected to get me out that day and treat me as a haematology outpatient. However the decision was with the haematologists and I had to have a CT scan at some point during the day. There was also a suggestion I might need to have a third transfusion. My birthday tea appeared to be under severe threat!

At about 11:00 I was seen by the haematology team led by Dr Rory McCulloch. He is the only member of the medical team who I will name simply because he has already done so much for me. They suspected lymphoma as a working hypothesis based on a assessment of my swollen glands, shortness of breath, low red cell count, night sweats but suggested this was treatable either with new drugs or with chemotherapy. They definitely wanted me to have another unit of blood and wanted me to have a bone marrow test as well as a CT scan. Dr Rory explained what was required for the bone marrow test and asked if that was all right; I replied “as long as it doesn’t hurt” and his response was that people generally feel “it doesn’t hurt as much as they expected”! At this point I realised I was extremely unlikely to be released on Thursday for my birthday tea.

Not quite how I thought I'd be taking my Birthday Malbec
©Harveywetdog

As I've said all the time I was on the GPAU I sensed they wanted me out and into another ward or into the corridor. This was quite obvious from the conversations that were ongoing in the unit and which were constantly concentrated on clearing bed space. This meant that having been told my CT scan would take place at about 14:30 and that I was to drink a lot of water beforehand at about 11:30 I was moved out of GPAU and onto a ward in the GRH Tower.

I might describe the new ward as male geriatric; I felt as if I'd been sent there as a warning of what would happen if I didn't look after my health. There was some seriously ill people around me but I found out where the toilet was (always an important step) and took to my bedside chair to await the next stage. At some point in this whole process I was told that the bone marrow test wouldn’t take place that day and that there would be a haematology outpatient appointment in two weeks time to address this.

Although my CT scan was originally scheduled for 14:30 it finally happened at about 17:30 thanks to one of the nurses on the ward really pushing it for me. The reality is A+E take priority and other patients simply have to wait, which is ok unless you have been told to drink 3 litres of water at 14:00 in readiness for a CT scan at 14:30. I emptied and refilled my bladder a few times that afternoon.

The CT scan went well once I was in the room, although the nurse did worry me when he told me he was going to inject some fluid which would make me feel like I was taking a pee as well as make me feel warm; I said “but I do want to take a pee!” Luckily I didn’t wet myself and there was a toilet nearby that I could use immediately after the scan.

I’d been taken off for my scan just as the evening meal arrived but luckily they’d saved me a sandwich and a cup of tea. I was slowly resigning myself to another night in hospital. I even ordered meals for Friday! I was becoming institutionalised!

At about 11:00 that evening they tested my haemoglobin levels again before the third transfusion and the third transfusion took place in the early hours of Friday morning. So on paper I was free to leave! But it's never as straightforward as that and I contemplated whether I would get to eat my NHS fish and chips lunch I'd ordered the day before.  

I had a visit from Occupational Health to make sure I'd be capable of looking after myself once I got home and then from the ward Doctor. I think he was surprised to see me still on the ward so I had to explain the logistics of the day before and how I wasn't exactly thrilled to be there either. All the time I was dreading someone running in with the CT scan results and saying "don't let him go!" but it ended up another blood test, check results, cannula out and get discharged and then off into the care of the haematologists as an outpatient. When I said I didn’t know when the appointment was scheduled for the junior Doctor said it would be in the post. I asked for timescales and it was test in the morning, check results and then, if all was OK, go in the afternoon. So the fish and chips were not going to be wasted.

Rate my Plate?
NHS Fish and Chips
©Harveywetdog

I also had a visit from a student doctor who I'd agreed could carry out an examination of me as apparently I'd got some interesting symptoms; make of that what you will! But training is important and I didn't exactly have anywhere else to go so I gladly said yes.

Release finally came mid afternoon but not before removing the cannula was not as straightforward as expected with a lot of blood leaking over the floor; bit ironic seeing as how the idea had been to top me up with blood. One thing I didn't say about the transfusions is that I expected them to have to take some out to make room for the good stuff to replace it. But no they just drip it in slowly. Of course as a good ex C&I engineer I did wonder about the PES assessment on the transfusion pump. But I was pleased to see a lot of touch, verbalise and buddy checking and challenge being deployed when it came to ensuring the blood supplied was correct and that the pump was set correctly.  

My two day visit comprised nine hours of blood transfusions and a ride on the CT scanner and I imagine a lot of checking behind the scenes; but if Dr McCulloch's hypothesis was correct, I realised that it had been life changing and that I was in for a pretty rough six months.

In part three I will talk about my first dealings with the excellent Edward Jenner Unit at Gloucester Royal Hospital leading to an exact diagnosis of Chronic Lymphocytic Leukaemia (CLL) and the establishment of a treatment plan.

Saturday morning home at last
©Harveywetdog