This is a continuation of a warts and all diary of my FCR treatment which happened two years ago and is now being published on the open web for the first time. Please don’t read on if you are the kind of person who might get anxious from reading others stories. But NONE of what follows made me regret having treatment. My lymphocyte count had already dropped from 95 (thousand) to 0.5! My lymph nodes had almost completely evaporated. This is GOOD NEWS.

The Story So Far

The Day Leukaemia Changed My Life

Two years ago I started FCR Chemotherapy

FCR Chemotherapy diary – Treatment Looms

FCR Treatment Diary – Gratefulness during Cycle One

Please don’t panic as you read this especially when I get to the bit about being admitted to hospital. Most people do not end up in hospital having taken treatment for blood cancer, but some do. It’s also not common as I understand it to be admitted on cycle 1. But there it goes. The point is though, they don’t want to let things get bad before admitting you so this is largely precautionary, entirely routine, and I’m genuinely not really that worried about it. They know what they are doing.

Personally I am glad that I did FCR at a bigger specialist hospital, with a haematolgy ward all set up to handle things well. I suspect a local district would have sent me home, but UCLH didn’t want to take any chances as I’ll explain. And again all the usual caveats apply. None of this need happen to you, and hopefully, even for me, cycles two and beyond will be less “interesting”.

More of the admission later but first let’s talk about my few days free of hospital and the wretched chemo tablets.

Day Six to Day 8

Woke up without any temperature or sweaty feeling. Oddly my scalp felt like it was a bit warm. Only a mild sensation but a strange one nonetheless. I can see why with stronger chemo they sometimes offer scalp cooling. Not expecting to lose my hair but just a sign I guess that things are happening. It’s as though my body is reformatting.

Nausea was still very much there even with the anti-sickness pills which stopped me feeling sick as such but left me with an icky feeling that meant I didn’t fancy eating much at all. Had the slightest blip to 37.2C in evening but didn’t concern my little head about it at all.

Spent most of the day asleep or resting.

The weird scalp thing didn’t return. I had run out of one of my anti sickness pills the previous evening. But found today I was still too nauseous to eat much. So I went to my favorite GP and asked her to write me up for some more. Was then able to eat lunch and even some dinner. But still very odd about what I fancied eating. And finding that things that tempted me earlier on didn’t now.

Sadly my GP told me she was leaving the practice for one nearer her home. But she suggested that I “go back to bothering Dr X” with a glint in her eye that made me feel she would miss me too. But she’s got me through watch and wait. And I do appreciate the GP she mentioned who’s one of the partners there so hopefully less likely to leave . But it goes to show how important it is to know more than one of them at your practice.

That evening about six pm I had a spike in temperature which I was alerted to by feeling sweaty. Highest reading was 37.8 but it went back down quickly and within half an hour (I monitored it very closely for a while) so technically I didn’t meet the criteria to high tail it to hospital, or even call up.

A friend visited and I made an error of judgement by asking them to bring two chicken and stuffing rolls with them from a local food store I often used to visit. I would live to regret eating that roll.

Then just before bed I had the first sign that all was not well with my digestion, I will spare you the details but it was the first sign I had food poisoning though I didn’t realise it. As my temp not too high, and it seemed the resolving, I did call up and was reassured by the chemo helpline that my symptoms could just be a side effect of the chemo. This continued over the next couple of days and I was in contact with the nurses.

Day 9

I called my research nurse as she’d asked me to and she told me to come into A and E that morning for a check up due to the low grade temperatures and diahorroea and to give them a chance to see what was happening to my bloods.

Turned out my neutrophils have dropped to 1.1 (1100) which isn’t too alarming really. But they wanted me to come into hospital as a precaution due to the combination of the bloods (I also had a mildly raised CRP), the fact my counts are likely to drop further over the weekend, my temperatures (in someone who had no fever for the first several weeks of pneumonia), and the GI symptoms.

I guess I would have got away with some of that. But not all of it. Not here anyway. They don’t take any chances. Which in the long run is better for sure.

Since being admitted I’ve had samples, some antibiotics and rehydration with fluids. And again I had a low grade spike in temperature during the evening, going to something like 37.7 if I remember right.

Day 10

So I wake up once again (after minimal but welcome sleep which I only managed when I asked for a break in the Iv fluids).

By the way I forgot to implement one of my top tips. When in A and E they approach you to take blood, you should ask them to please do it from your forearm is possible. They usually go for the crook of the elbow, which we they leave an IV access port in then means you have a constant battle not to bend your arm and cut off the flow of fluids! Hence part of my challenge with sleeping!

I’m very grateful for this place which really did save my life twice during my watch and wait. And feeling a bit of a fraud as in myself I feel so much better than I did on the last two admissions here. But I understand the caution and logic.

Turns out I’ve lost almost 7Kg this past week or so. May need to work on what I can actually eat for the next cycle. I have more weight to lose before I hit ideal but I sure can’t lose that much each cycle.

I rather suspect that unless the bloods they have sent off show a surprising INCREASE in neutrophil count and everything settles down really quickly today, I may well be here till Monday.

I’m glad that my family are used to me being in hospital now, and that I prepared them and myself for the chance I may have to come in during this FCR six months.

It’s really not as big a deal to be admitted as you might think if it’s never happened to you.

There’s a whole lot of waiting around. So much that you eventually learn outpatient waits are not so bad. And you learn how to amuse yourself even if you don’t feel like reading or TV.

But when you realize that some people do deteriorate and need more acute treatment, to wait and receive treatment that is meant to stave off the worst stuff potentially coming your way often makes sense.

My neutrophil count is low but not that low, but may well worsen over the weekend so let’s monitor it. I’m sure tho that without symptoms this level would NOT have been enough to admit me, it can go much lower than this without causing any problems.

It’s possible I could be just beginning to develop neutropenic sepsis (even tho my count is really not that low) so the idea is to not just wait for that to happen, but monitor it.

I guess I may well already have had a minor infection even this relatively small drop has uncovered. So giving me antibiotics before it gets out of hand makes sense.

So not how I was planning to spend my weekend. But at least my phone works and I can even get enough mobile data signal to watch the F1. Photo is the view from my room which people pay millions for. I’ll try to think of this as my hotel room on the 16th floor.

Day 11

So here we are. Officially hump day for my cycle one. I’ve got used now to thinking of the whole 28 days as cycle one and not just the treatment days. For the next few months my life is going to be lived by this rhythm.

I didn’t expect to be an inpatient on hump day. But I am. And of course unlike Wednesday in a normal week which is often referred to as hump day because it’s all downhill to the weekend from there I’m aware it’s all downhill to chemo! But next week is meant to be the one week of the month I feel relatively normal. So let’s hope I do.

Turns out I have food poisoning with campylobacter from a chicken roll I ate from my local supermarket. More of this later. But let’s just say I’ve been wiped out, and at the moment can’t even get from bed to camode without help from the nurses.

If I recall correctly today is supposed to be the day your counts are their lowest tho I am sure that there must be some variation in this (and I may have got it wrong). Perhaps others can comment on what their lowest level days were.

However, I’m freshly aware of the warning associated with rituximab that it can actually trigger late neutropenia which arrives at any time. I now realise I just need to assume I am neutropenic all the time. And with the normal neutrophil limit being above 2 then I guess I may not see that level very often at all in the next few months.

Of course as with all the other markers that we follow there is a “normal range” and a “Haematolgy range” For example even tho part of my breathlessness and exhaustion is probably related to the fact I am technically anaemic right now, I am well above the levels that haematologists tend to worry about and consider a transfusion for.

Similarly although anything less than 2 (2000 for the Americans) is technically neutropenia and you will have a degree of impaired protection of your bowel and lungs from bugs, you may hear your doctors saying that you are “not neutropenic” unless it gets to 0.5 or below.

Some people apply the neutropenic diet rigorously but only when they know their counts are low. But unless you have a blood test every day you have no way of knowing what your level is on a particular day.

So from now on during treatment I’m going to be living all the time by the full restrictions for under 0.5 found at this link: bda.uk.com/improvinghealth/… although the whole concept of the neutropenic diet is somewhat controversial these days.

I’m also very paranoid about who I’m going to entrust to provide me with food to eat. I trust the hospital food (even tho I once worked as a vegetable chef for a hospital) but right now I’m not sure I trust anyone else.

Here are some links on what is needed to protect yourself by you and anyone who is cooking for you. And to be honest even if you are on watch and wait it’s probably a good idea to implement at least some of this right now as your immunity is already impaired to some degree.

It is interesting to note these precautions were written two years ago, they are highly relevant today during the COVID pandemic

1. Rigorous hand washing the NHS way with drying on paper towels NOT towels that have already been used nor hot air blowers. In fact if no paper towels available you are probably better to just let them dry! (See video here and the “sing happy birthday to you in your head twice”)
2. Rigorous kitchen, toilet and even things like door handle hygiene. And being very choosy about where I eat food from.
This is outlined in this Blood Cancer UK leaflet (note that there are areas of discrepancy between this and the BDA advice showing that it’s not always 100% clear just how strict you should be.
See also this NHS Page about general food hygiene
3. Only using a fresh towel when drying myself and beginning with the eyes and face and working towards the least presentable bits to finish and washing my towels at least at 60 and maybe even 95 degrees C (near boiling point).
4. Avoiding social situations where lots of people are crowded into a room with poor ventilation. Ensuring that when I meet people I don’t get too close to them, and not seeing someone who has flu!

I remember saying to someone I wonder if this is bacterial because I definitely felt a bit better for about a day after the single shot of tazocin they gave me in A and E before they knew my neutrophils were in the mildly and not severely low range.

As Sunday wore on, however I almost had a fall and became so unsteady in my feet I was told to use a camode and only transfer with nurses helping me. My transition into an elderly gentleman hence complete.

And as the GI symptoms were getting worse and worse as the day wore on with real cramping pains Imagine how depressed I was to hear that at that point all the cultures were negative for anything. Why depressed you ask? Well someone I knew on one of the forums told me they (very unusually it has to be said) had experienced 2 weeks of diahorrea after each of the 20 times they have had rituximab in their life. So I figured that must be what was going on and wondered how long it would be before this stopped and how on earth I would cope with it each chemo cycle. I was still reliably spiking a low grade fever every evening.

I was able to watch the Formula One on my phone but spent most of the rest of the day just doing nothing. They finally gave me some Imodium to slow the bowels down since the cultures remained negative. What we would learn the next day is that cultures can be negative then turn positive when re-examined after giving another day to grow.

Day 12

I should have trusted my instincts that this was an infection. My mobility always reduces a bit when I have an infection. And I was still getting those mild raised temperatures in the evenings. And as the day wore on (tho I wasn’t aware of this to afterwards) my Apple Watch was recording a lot of mild tachycardia. In fact the HeartWatch app which I do recommend calculated that a full 40% of the readings my watch did were 100 or above although I spent the day in bed. That’s not normal for me and with the app I have the past data to prove it.

I took great comfort from the hospital chaplain I requested to visit. She shared communion with me (I’ve not been to church in weeks) prayed for me, chatted with me about theology and suffering (See my Patheos blog for some of my thoughts about all that if you are interested). But if I’d been a person of a different faith or none she’d have been just as glad to talk about how I was feeling. And I must admit that I was actually feeling quite low. My mind was not even interested in watching things on TV.

In the evening I started to realize the reason they don’t like Imodium if you actually have an infection. I was feeling suddenly very nauseous, had lots of bowel spasms but no action due to the break we had applied, and was feeling suddenly very very unwell. I even had that sense of impending doom people describe. Feeling like I was going to die. Turned out my BP had also dropped quite a bit for me (tho not into panic mode quite).

As I was already in that state of anxiety someone came in and told me that when the microbiologists had looked at the culture samples for the final time it had turned positive for campylobacter.

I read a medical article online that said “avoid use of loperamide as it has been associated with fatal cases”

Relaxing music, a sleeping tablet, an IV drip overnight to rehydrate me, and the antibiotic Azithromycin were all prescribed (ok the music was prescribed by me!).

I slept Iike a baby, and I don’t mean that I woke up screaming every two hours!

Day 13

I felt so much better when I woke that day. Some improvement of the GI symptoms. Still really poor mobility. But mentally beginning to have some clarity. And for the first time since I got here I got showered. Even tho this meant loosing my last shred of dignity and a nurse helping me I was so pleased to actually get out of the bed even if it was just to sit on a chair in the wet room. I felt more human and clean at last afterwards.

What I’ve found is even in the good hospitals it is very rare the nurse that will ask you if you have cleaned or even brushed your teeth. Maybe they only ask when you start to really smell! I confessed to the first one that asked me if I’d had a shower that I had felt too weak to even do my teeth since admission (after all most of the time I’d been told I shouldn’t even transfer to the camode without help). The nurse said you could have asked any of my colleagues and they would have helped you. So the moral is we sometimes may have to lose our pride and ask for help with things we would rather keep private. Unfortunately it is part of being human that we enter what Shakespeare calls the second childhood. I just don’t suppose most of us expect to enter it so young.

One great thing about Tuesday was at least I was a bit less dangerously wobbly on the transfers to the chair and back to bed. So there is clear hope that my state of helplessness is temporary not permanent.

Day 14

Again a small improvement on wakening. Most evidenced by my brain working better. And so I was discussing with the nurse who invented what I christened the “Blessing Knot” (that was her first name). See photo attached. It’s also done at the foot of the bed).

I asked the nurse who first did this on making my bed a couple of days ago whether she had heard this from someone else and she said no she had invented it. It’s spreading round the other nurses in this ward and I’ve had one each day since. And for the first time in all the time I’ve spent in hospital my bed sheet isn’t moving so I’m not ending up lying on the horrible plastic mattress.

I congratulated this innovative nurse today on her invention that copes even with my fidgeting. I also urged her to do a study on its effectiveness. I said get your colleagues together and do say 300 consecutive bed changes and record whether the knot has been tied and if the sheets had moved or not by morning. My experience would suggest 100% of the time without the “Blessing Knot” they move and 100% of time with it they don’t.

This might sound a small thing. But when you spend your day and night in bed comfort is important. And the sweaty plastic could even give you a bed sores potentially. So the blessing knot could save a life if a bed sore got infected!

I really hope the nurses here will follow my advice and write about this in the nursing journal. Meanwhile you could ask your nurse to do it for you if you are in hospital’ See the photo and note this is done at the head and foot of the Mattress.

Shortly after this conversation I was offered a massage with aromatherapy by our complimentary therapy team. This I did and played my son’s album called Grey Skies by Ignis (available free on all steaming platforms). The therapist was so impressed by its calming almost hypnotic nature she said she will probably use it in her yoga classes.

Later today a Physio will come to try and get me moving again. And hopefully I will be well enough for home perhaps tomorrow.