This is a continuation of my FCR diary from two years ago. If you haven’t read the previous articles here they are:

Cycle 2 Days 10-12: Home and a Fall

So I had a fall today.

Or that’s what my fancy Apple Watch told me after my kitchen stool slipped out from under me and I flopped onto the floor landing firmly on my fortunately still quite well padded behind. I didn’t hit my head or any other part of me.

I had just a few seconds to reassure the watch I was OK, or it would have called emergency services and told them its wearer had suffered a hard knock and needed help.

One more mark of becoming old before my time I suppose!

I don’t even have a bruise (the sight of me peering in a mirror to check my cheeks will fortunately never see the light of day!)

I was rushing to make some fried eggs and failed to be careful enough, being more perched on the edge of the stool than on it properly.

It did shake up my emotions and my back a bit. But nothing a bit more morphine and a lie down hasn’t caused to settle down.

It’s a wake up call that I may be home but I’m not that strong yet and I do need to be careful. And I did like that my new Apple Watch was looking out for me the way it was.

Other than that it has been good tho quite an adjustment to be at home. I have to keep going with my exercises as I have been but not expect my progress to be rapid I guess. Slow and steady wins the race.

Spending a fair bit of time sleeping. And sometimes writing things that afterwards even I don’t understand.

I must just be patient.

And be glad that I didn’t need to head back to Euston after kitchen stool-gate

Cycle 2 Cycle 2 days 13-28

I’ve managed to keep away from hospitals for the last two weeks. I haven’t even seen my GP except for once to update her on my trip to hospital and get my new medications sorted on their system.

What’s the last two weeks consisted of?

Well I continue to gradually get stronger. I do my strengthening exercises most days, though I’ve overdone it some days and either pulled a muscle or not had the energy to do it on some days. As I’m stronger, I’m using my sticks rather than the Zimmer frame.

But I’m not doing very much still. A lunch out with a friend was welcome, but led to a day in bed the next day with exhaustion.

Mental physical and emotional energy are all still pretty low. But I’ve felt more able to concentrate on a few TV programs over the last few days.

Writing is still hard. And I’m still wanting to spend a lot of time lying down.

I managed to cook a stir fry for the family one day. And have made my own sandwiches etc. It’s amazing how pleasing it is to be able to do such small things.

It all feels like I’m gradually climbing out of the pit I’ve spent the last 18 months slipping further and further into.

My GP was dead right. It did have to get worse before it got better for me. And overall I guess I’m still worse than I was before chemo started. But I’m clearly better than I was at my lowest point whilst I was hospitalized and needing help to get from the bed to a chair.

It’s hard to believe that tomorrow is day one of cycle three. And that by the weekend I will have completed half of my treatment days. Shame that I know I won’t be feeling up to having a beer to celebrate!

Today I’ve been at UCLH which of course I’m very familiar with. Blood test, meeting with the counselor who I see about once a month nowadays, hanging out in the patient lounge (information and support services).

Nice to talk to a couple of patients and some of the familiar staff members. I feel like I belong in this place. Which sounds weird as I write it but I’m sure you understand.

Just as well I feel comfortable here, as I’ll be back and forth each day starting tomorrow for days 1 to 3 of cycle three. The treatment days (so yes I am still having it IV like the Americans do rather than oral like the Brits typically do).

One person I met today told me their CLL story. Eight years ago they were given what was then a new treatment FCR. They had a rough time. Got admitted and as they put it “couldn’t walk”. They needed transfusions and were told that they shouldn’t have cycles four to six. But for the past eight years they have been in remission and coming up every six months. They’ve had just a couple of minor infections in that time with no other issues. So for some people FCR really does work wonders.

So that’s a nice encouraging hopeful story for those of us going through FCR. I’m actually hopeful that cycle three will be more uneventful for me. Like cycle two I will take cyclizine as an extra anti sickness medicine. And I will be given the bone marrow stimulating injection (GCSF) to try and prevent serious neutropenia.

As you know I had an infection and was hospitalized so they want to try and prevent it from happening again to me.

Today my neutrophils are actually a little on the low side (1.1 or 1100 in USA lingo). But not low enough to really worry the haematologists. So unusually they are starting the GCSF today the day before my chemo starts tomorrow with the hope to boost the neutrophil numbers over the next five days. I’ll then have two days without GCSF. After this I will have to come to hospital on the 12th for a blood test to make sure the numbers are ok and if they aren’t may need more GCSF at that point.

So some apprehension about how my bone marrow will cope with cycle three. But actually given that this is a relatively late neutropenia it’s probably caused by rituximab. It’s good that I haven’t relaxed my eating restrictions assuming that as it was the end of the cycle my neutrophils would be normal.

So it seems to me that if you are on treatment whether FCR or anything else it’s best to assume you could be neutopenic at any time during your treatment and so restrict what you eat at least to some extent at all times. But I guess my experience makes me more wary than most! And I’m sure there’s many a person who eats what they like and manage to avoid infections nonetheless.

Anyway so I go into cycle three almost feeling like an old hand. Treating this with respect and a little bit of apprehension. But also hope that it will go smoothly. Which cycle two did really.

Cycle 3

So I’ve yet to write a diary at all for cycle 3 and I’m on day twenty I believe. This is largely for good reasons.

I did post a video wishing all my friends a happy Christmas and giving a basic health update:

I was a bit concerned before cycle 3 started because we discovered on the pre treatment bloods that my neutrophils had actually dropped (to 1.1) as cycle 2 went on.

So just before cycle 3 started I had some GCSF which kinda felt like we were doing two conflicting things. The good news is that my bone marrow does seem to be sensitive to that drug and as a result I got a good jump in neutrophils to a high level. We agreed I would take it for a week mid cycle to attempt to maintain good levels.

Oddly to me though they don’t see the need to monitor bloods closely if there are no symptoms and so I have no idea what my count is doing right now.

So I guess the message is assume throughout the FCR period you could be neutropenic at any point and take care to avoid infection especially via dietary means. So there’s been no chicken rolls for me, no Chinese takeaway, no reheated food if it had meat in it (only one go at the turkey for me this year!), obviously no pate and well basically limited fun. My slight anaemia has given me a great excuse to fry some steak and veg though. And I have been eating a lot of mince pies! Even tho they don’t help my reflux I just don’t care. And my weight is such that I don’t even have to feel guilty about it this year. People keep saying how healthy I look when what they mean is I’ve lost weight and my jawline looks sharp because I’ve also lost the nodes that made me look a bit like a hamster.

The one fantastic thing I can say about my last blood test was that having been 95 (thousand) my lymphocyte count was 0.08 after the cycle three treatment days had finished! I can live without healthy lymphocytes if it means I am almost disease free at least in my blood.

Nodes are basically not palpable anywhere tho I’m aware that doesn’t necessarily mean they and my bone marrow is clear of disease. We will have to wait and see if I reach MRD-ve status. I at least can say I am getting a response, the big questions are how deep will it go, how long will it last, and what will be my functional quality of life.

And so as much as I have had a challenging time with FCR I will keep going as long as my body can cope secure in the knowledge we are at least killing a lot of my cll cells! Imagine if we managed to somehow kill every one of them! Someone said to me you have to think of the chemo as extending your life. And they are right of course about it and any other treatments we take.

The other good news is that the last few weeks have included me feeling gradually stronger tho I still don’t go out of the house much. Mentally I have been able to concentrate a little more and so have written a couple of blog posts.

I did have a bit of an issue during the treatment days in that I had some kind of late reaction to initially the rituximab. So as they sped up to the fastest rate it seemed that perhaps my hydrocortisone had worn off a bit and so I had a huge sense of tightness in my chest and asthma symptoms. A pause, extra asthma inhaler, and more steroids put it to bay and we thought that was the end of it.

But as the flush at the end of the C infusion was going through a nurse in the day clinic said “you will be heading home soon” and the next thing was I had a return of the reaction but this time if anything more serious.

More inhaler and steroids didn’t control it initially. And as I could still talk (so wasn’t severe enough to be at imminent risk of death!) but was tachycardic the doctor they called was reluctant to let me keep puffing on my inhaler but did want to admit me. So I had a few hours of having to put up with symptoms that were uncomfortable to say the least. Eventually they let me puff some more and we got better control tho my asthma wasn’t fully controlled for a few days.

I spent a total of two nights in hospital and managed to finish the F and C without too much further incident tho I did have a minor reaction to the third lot of C again as it was being flushed at the end. Maybe that flush was a bit too quick?

I have noticed slightly more itching the past couple of weeks. And so I will be speaking about what we can do to try and minimize the risk of this happening again (going slow on all infusions and flushes, maybe more steroids or longer acting steroids, maybe an even higher dose of antihistamines (tho I’m on double the BNF limit!) and I’ve got written confirmation from my GP that I’m indeed meant to be on the regime that uses my combination inhaler as both preventer and treatment during any attack.

So whilst I’m a bit nervous about it, I have some thoughts to discuss with the consultant on the 27th in the morning as we plan Cycle 4 which is due to start on the 2nd January.

But I’m doing my best not to think too much about the next cycle which is partly why I’ve not been on here as much. I intend to enjoy Christmas and have been listing to my Spotify Christmas music playlist a LOT.

I know Christmas is tough for us with our limited energy. And I get that family just can’t fully understand how sick we sometimes feel despite looking so good. But I’ve decided I don’t NEED them to understand.

And I’m going to keep developing my ability to fake being well. And if I can look THIS good despite still feeling dreadfully exhausted all the time, well why not enjoy the compliments that come!

Besides which taking about CLL all the time is boring and depressing. The other day someone mentioned how well I look and I promise you I didn’t even think about my sickness when they said it. Definitely some progress mentally and emotionally. But then I’m definitely feeling at least a little bit more mental energy than I did (tho feeling less would have been difficult!).

People sometimes say I’m “brave” now. That seemed to be the response to my video. I do hate it when they say that as I don’t want to be part of the problem of the tyranny of the positive. I don’t want to be just one more person who’s “fighting spirit” makes everyone who is truly struggling feel depressed.

So I try to be honest and share that I’m still scared and low at times. That tears sometimes come (tho there’s been less of that lately. I think the last time may well have been when the nurse asked me if I could go to the discharge lounge for some reason). And that basically I’m NOT the poster boy for some kind of heroic fight where we all pretend everything is just fine when it really isn’t.

But I do encourage us all to also remember to remind ourselves, having faced the facts and not denying how we feel about them, to also remind ourselves of some not alternative but additional facts that are also true. So for me for example “I feel rotten but it’s also true my nodes have shrunk and my lymphocyte count is way down”.

So I can be sorrowful about the loss of my normal life but also rejoice both about the things I can do and the fact that I seem to be responding to chemo. We can experience two emotions at once people! But enough of that for now as it really deserves its own well thought through post.

For those of you facing treatment, I know how anxious you feel. I was there. But remember if that’s your situation this is the time you fight back against the cancer that some of you have had to passively watch for years invading your body. For those of you in remission whether full, partial, or even the gold standard MRD-ve, LONG MAY IT CONTINUE! For those of you still a long way from needing treatment may you find the strength to grab onto what life still has for you with both hands.

In fact for all of us, let’s resolve not to allow blood cancer to rob us prematurely of things we can still enjoy.

Every single one of us has at least something we can be grateful for. Even if it’s just still being able to breath and think enough to read. But I’m sure there is more.

Find some people you love this week. Surprise them by focusing entirely on them for a bit and asking how THEY are doing.

Do something for them. My wife recently had a tooth out and I was shocked how rewarding it was for me just forcing myself to do some things so she didn’t have to.

I even did some stuff I really shouldn’t have and suffered seriously with sore legs the next day.

Let’s make a habit of us giving to others. And being thankful for what we do have and can do. It’s true we have a lot to be sad and worried about.