Today we continue publishing my two year old treatment diary. Please remember these posts come with a health warning. My experience will not be your experience. Many people sail through without significant issues. And as we learnt in the last post, my hospital admission was promoted by me foolishly eating a chicken roll I didn’t know for sure was cooked and stored properly. And what follows must surely be related to just how fatigued I had got even before treatment started. I was pretty weak and struggling with mobility before starting the chemotherapy.

Please do look away if you don’t want to read my “warts and all” report. And again I say please don’t assume this is what is going to happen to you!

If you haven’t seen the old posts, here is 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

FCR Treatment Diary – an unexpected hospital admission

The hospital stay continues

As I was reflecting on the first week in hospital, I was thinking about watch and wait as a bit like sky diving. As we are falling we are told to enjoy it as the ground is approaching. Then in our ears we start to here a message “pull the ripcord soon.” I like to think of that as a treatment window that opens. Clearly if you were sky diving and didn’t pull that cord immediately the voice in your ear would gradually get more urgent the closer you got to the ground. I’m really starting to wonder if perhaps with retrospect and the benefit of hindsight I pulled the ripcord of treatment just slightly too late. Easy to say that now of course. But the point is that I was pretty weak by the time we started. At least I wasn’t already anaemic though. 

My pre chemo fatigue had got to the point that I had stopped going out altogether except to hospital or doctor appointments. And I was using hospital transport. 

I was only climbing the stairs once per day at home (i.e I would come downstairs at some point in the morning and go up at some point in the evening). And I’d stopped even doing the little things like clearing up the kitchen in the morning. I was also pretty wobbly on my feet and using the walls or my sticks to hang on to often as I walked around as little as I could (essentially to the toilet and back). 

So if I was to experience worsening fatigue as a result of chemo I really didn’t have far to go except to become essentially bed bound. 

And that was what I largely was during the five days of FCR and the three after when I spent most of my time nauseous or sleeping. Toilet walks were very difficult but not quite impossible. During these few days I lost 7kg in weight and must have been partly digesting my own muscle. 

Then of course I had several days in hospital with the campylobacter food poisoning and as I explained in the last post significantly worsened mobility to the point I needed help to get on and off the bed. 

Day 15

A physio game to see me. And just got me to stand up with a Zimmer frame. I greeted this thing like it was my enemy and represented another step in my decline towards old man status. I’m 47 not 90! 

But it was clear the Physio was worried about me and as much as the bowels were settling, and I no longer had a fever, there was no pressure coming from the medical team to get me home. 

Day 16

Beware of Fridays in hospital. They can take on a life of their own. They can put a pressure on you or your doctors to make a decision that is a bit premature. My docs had already said that my mobility was all that was standing between me and home. The Physio was the doorkeeper. And I knew that they work Monday to Friday’s only (apart from emergency). So it was either get out then and there or stay over the whole weekend. So I decided to put on a brace face with the Physio. 

The dietician came and explained that It really isn’t healthy to have lost so much weight so quickly. She told me that I now needed to eat more calories and more protein to try and reverse at least some of this, and to try to eat more during the next cycle. 

Special high energy high protein drinks were recommended. I had been eating the full portions of Hospital food (even though at times it was probably not being absorbed). But my weight was not changing. I guess my body has higher needs right now as I turn from a catabolic or destructive phase back to an anabolic or growth phase. I really feel like my body is reformatting. 

One strange but good thing is I realized that day I could now sit out in a chair with my feet on the floor without getting the dull ache I have had for months. I’m guessing that’s to do with the reduction in my lymph node size leading to an improvement in circulation so a reduction in mild fluid pooling in my legs. 

In the afternoon the Physio arrived. And I got myself worked up to try and show her I was well enough to go home. What a fool I am. I have never known how much to push myself and how much to rest. That’s the dilemma of cancer related fatigue for sure. And before anyone says just listen to your body, I would never have got out of bed since May 2017 if I just listened to my body!

So when she came to see me, I was bright and breezy (amazing what a cheerful front I can put on for a few minutes). And she got me to stand up and taught me to use the Zimmer frame for the first time. 

I pushed myself with adrenaline to walk a few steps further than she expected me to, and further than I probably should have. And when I sank into the chair I didn’t tell her how totally wiped out I felt or how sore my muscles were. 

Instead I breezily explained how if I went home I could sleep on the couch downstairs and just walk to and from the toilet with the frame. 

Yes my wife would bring me all food and drink. Yes I had people with me. Yes I felt so much better today I was sure I’d feel better still tomorrow and the next day. Yes I could do basic washing downstairs but would be good and wait till I was stronger before trying to go upstairs. They promised to refer me to community Physio and OT. 

And I somehow persuaded them to let me home. 

Day 17 

I found it impossible to walk to the toilet with my Zimmer frame. I nearly fell over several times. I found being around my family too much to cope with. I kept asking them to just leave me alone. I was so tired all I wanted to do was sleep. I started to restrict my fluid intake so I wouldn’t have to walk the few paces to my toilet so much. Not smart. I was getting dehydrated and weaker and weaker.

Day 18 

I had developing fast heart rate according to my watch. I felt like I couldn’t walk to the toilet ever again. I was feeling hot. And I had a mild temperature. I felt like I was really sick and woozy. I rang the nurse helpline and they told me to come back to hospital. 

UCLH A and E were efficient as always and I got admitted and told I needed to recuperate. Unfortunately there was no beds in haematology. So I’m experiencing being an outlier. The staff are great but the doctors and Physio don’t get here till late in the day if at all. I really should not have pressed to be discharged so soon.

Day 19

The doctors told me today that I needed some days to get stronger and that there were lots of reasons for the perfect storm of exhaustion I was feeling. The temperature seemed to be less of an issue (and anyway it never went above the magic 38C). I must say I wonder if it’s anything to do with the rituximab even at this late stage. I’ve never been one to have temperatures, especially since I was sick with CLL. So even these mild temperatures make me wonder what’s going on. But nothing focal seems to be happening. 

Day 20 

Having spent the day before just resting in bed and sleeping I decided it was time to at least try some walking. 

So I asked the nurse to supervise me as I tried a few steps with the Zimmer frame. I only got half way to the toilet in my room before a mixture of breathlessness and weakness forced me to stop. They pulled up a chair behind me and I sat in it feeling disappointed in myself. 

I did however get the nurse to wheel me into the shower and managed to shower myself without assistance whilst sitting on a shower chair. My Heart rare soared like I was sprinting! But I felt so proud of myself when I was done. I sat up in the chair for a while before going back to bed. 

We did decide too that it was the day to restart my gentle leg strengthening exercises in bed to try and trigger my muscles to grow strong again. 

The doctors said I needed intensive Physio. But the Physio could only spare a little time and so said that really I just need to work with the nurses at extending my walking range. 

I still got another temperature blip in the evening but again not that high. 

Day 21 

I showered in the chair again. Sat in the bedside chair a bit. Did my bed based strengthening exercises and again walked about halfway from my bed to the toilet twice. Which I suppose is once more than yesterday even tho it’s only a tiny number of steps. 

The only way is up. 

So in summary. CLLl can make you really fatigued and my mobility was terrible before chemo. FCR can make you more fatigued. As can an infection. As can losing loads of weight too quickly. As can bring forced by all the above to spend a couple of weeks in bed. This perfect storm I am sure will not happen to you. But perhaps the take home message for you the reader is if and when you do take treatment whether FCR or something else do understand that it may make you more fatigued than you were before you started it. 

Be kind to yourself. 

And be glad you aren’t so fatigued you are in hospital! And see the side effects of whatever treatment you get as being an investment for a better future. I’m telling myself often that I must be well on the way to getting to MRD negativity if I had such a strong reduction in both counts and nodes. 

How long will I be here? That’s not clear. I will keep you posted. 

Day 22 – 28 The end of the first cycle

Anyway as one cycle ends and the next cycle begins I am still an inpatient in that twilight world of a private side room here in the UCLH tower. 

The days all merge into one a bit so I just give a brief overview of what’s been going on. 

My blood counts are all looking great still and so there is no reason to delay cycle two.

I no longer have any signs of infection. And we have ruled out any more specific causes for the weakness I have been feeling. I had a lot of intensive investigations to be sure that we were not missing anything.

I am however still very fatigued. So much so that I can’t walk. Side effects of one of the tests didn’t help. Post lumbar puncture pain is pretty debilitating. But that has almost completely gone away now. 

We are still trying to figure out how much morphine I need to keep my back pain reasonably controlled. This pain is from the benign vertebra tumor (a haemangioma) that is apparently nothing to do with CLL but it decided right before treatment would be the ideal time to cause me terrible pain! Thanks for that vertebra. I mean you do pick your moments don’t you!

We will need a more long term plan for that at some point. But importantly it’s not compressing my spinal cord, so the top priority is still continuing to fight back against the CLL. 

Oddly I have more sweats than I ever had before chemo. And I have low grade blips on the temperature most days that typically don’t even go above 37.5C. I get the sense the CLL is fighting back just a little bit. 

But if round two is as effective as round one was then the disease will be really suppressed by the end. My nodes shrunk a LOT last time and my lymphocyte count is still only about 0.6 (or 600 for the Americans) down from 95(thousand)! 

So hopefully later today they will be hitting me with FCR for the second time. Or if there’s a delay I guess tomorrow. This time all the drugs will be given IV and it will take three days not five. 

This is due to the problems with nausea I had and the resulting large amount of weight loss. I need to make sure that I try to consume a bit more food whilst having the treatment than I did last time. 

The hope is that in the immediate aftermath I will be able to build my strength up and get our of here safely. If chemo is going to set me back the consensus seems to be it’s better it does so on schedule and whilst I’m still an inpatient. 

Cycle 2 Treatment days

Today is day 4 of cycle 2. And I have some good news to report. I’ve completed the treatment days of cycle 2 and they went much more smoothly than cycle 1. 

We decided to switch to IV delivery of the chemo drugs as some people find that better tolerated on the nausea front. But for me I wonder if actually adding in an extra anti-sickness medication was what made the biggest difference. I was given an extra medicine immediately before the infusion and found that the infusion itself didn’t even make me nauseous at all. Even the Rituximab infusion went without event. 

The next morning I did wake up retching and i was concerned I was looking at the same issues I’d had last time. But in fact i was due a dose of the same medicine and that settled it down and I have been able to eat my meals normally. I’ve only really noticed any nausea when that medicine was due. So the take home message is tell them if you are suffering nausea and ask them if it’s possible to tweak your meds. What worked for me might not work for you. 

Chemo has left me feeling very drowsy and I’ve spent a lot of time sleeping during the day. But I’ve been able to keep up with my bed based strengthening exercises, some mobilization, and sitting in the chair. It’s so encouraging that I’m actually getting a little bit stronger every day. It feels like chemo has if anything accelerated that process not slowed it down. 

So in terms of receiving the treatment itself it’s hard to believe I’m a third of the way through already. 

Hopefully i will continue my progress and be discharged soon. My back pain is under much better control now with regular codeine which has led to needing to counteract certain effects of that.

But all in all, though I’m still in hospital for now, I’m much happier as it seems clear I’m heading in the right direction.

Cycle 2 Day Nine: I’m going home!

Over the last few days I’ve just slowly gradually got stronger. And we also managed to get on top of the pain I have had from my unrelated back issue. To make absolutely sure I didn’t have any neutropenia (and neutropenia related infection) this time round they also decided to give me the bone marrow stimulation injections. 

So I am heading home. And all being well won’t be back at UCLH till day 28 of cycle Two. I’ll have a blood test that day and see my counselor. Then the next day will start three days of IV FCR as a day case (going home each evening) which hopefully will go off as smoothly as cycle 2 (which I had as an inpatient) just did. 

Will keep up with my Physio exercises and hopefully be significantly stronger by the time cycle 3 starts since I’m getting stronger each day at the moment. 

To be continued . . . 

FCR Diary – Home at last and Cycle Three