Good Days And Bad Days

[Aidan]

Almost a year into treatment of Essential thrombocythemia (ET) with hydroxycarbamide and my dose is stabilised - for the time being, at least - at 5,000 mg per week.

Something I’ve noticed is that I have good days - and bad days. Good days are easier to capture in words. I feel relatively “normal”; I have a fair bit of energy; I’ve slept weil…

Bad days come in various guises…

Some days I wake up feeling nauseous. Not to the point of actually throwing up. But a low level constant feeling in the pit of my stomach of what people in generations younger than my own probably describe as “ick”. (This feeling usually passes by the middle of the day but it can be quite intrusive for several hours…)

When I was first prescribed hydroxycarbamide, I often felt stiff in my joints - ankles especially, back, hips… Such stiffness seems to have lessened somewhat. But from time to time it decides to pay me an unwelcome visit.

Brain fog - something which a few people have mentioned to me as “chemo brain”. I used to be pretty sharp mentally but some days I have the memory span of a goldfish. (Apologies to any goldfish who may be reading this! ) Yesterday, for example, only a few minutes after breakfast, I couldn’t for the life of me remember whether I had taken my morning pills. (Unrelated to my Essential thrombocythemia (ET).) The only way I could work out was to do a count of my week’s meds and that proved that I had, indeed, taken them. (To avoid such confusion in future, I have ordered a dosset box. But for some reason, that has made me feel a bit “old”. Oh the vanity! After all I am a bit old. )

Occasional light-headedness. Occasional headaches.

Some days, several of these pests can decide to pay a call together. Like unwelcome (and unruly) house guests who turn up unexpectedly and outstay themselves…

And the bad days tend to come on the heels of those days (Friday, Saturday, Sunday) when I have to take two capsules of hydroxycarbamide. Less so on the days after taking a single capsule - but that’s a tendency rather than a hard and fast rule…

Surprisingly - because I have been prone to depression and anxiety earlier in my life - these intrusions don’t seem to lower my mood (except, perhaps, in the very moment when they can be a bore). I’ve been relatively cheerful since receiving my diagnosis and seem to be able to accept the bad days as “just one of those things” which I have to bear.

So, just putting this out there for others. We will undoubtedly all have good days and bad days. My strategy is to make the most of the good ones and to just go with the flow on the not so good days - to watch telly, read a book, listen to music, not create any pressure for myself until I feel back to my myself.

Anyone else out there have this mixture of good days and bad days? (I hope your good days outnumber the bad ones and - of course - I hope that today is one of the better days!) What’s your strategy(s) for getting through?

Very best.

Aidan

[judesadventures]

@Aidan what a coincidence to read your post this afternoon, feels like I could have written some of its elements! I’m not the blood cancer patient in this house, rather I’m the carer of my hubby. His original blood cancer transformed earlier this year into another more aggressive one for which he is currently going through intensive chemo. Indeed cycle 5 started today and he’s home but sick as the proverbial dog. I write this sitting in the quiet with one eye on him from another room. He is trying to get through the day as best he can.

The reason your post resonated with me is that it echoes some of how I feel as the ‘other’ in this latest diagnosis. So I don’t have the condition you guys have, I don’t take the meds etc but I have many of the symptoms you describe. I think, for me, they’ve come as I’ve become a woman of a certain age. It’s just as likely though that they come from the place of stress and exhaustion I live in at the moment.

I struggle a little when I think of the days as good or bad. It feels like good isn’t the right way to describe some of the days that aren’t as hellish as the others. Feels more like awful and then ‘just’ bad days. Yet there are rare moments that are ok, that feel like we might make it, that we’ll come out the other side - you know those clichés.

If it was anyone else, and that includes you, I’d tell you/them that I’m impressed with your realism, your acceptance of the days as they present, your ability to see that some feel better than others, that you seek to get through the less good ones the best you can with the distractions you mention. Id then tell you it takes some strength to be able to rationalise it all and that, above all else, you seem to show some kindness and patience towards yourself.

I should probably extend that same grace to myself. I should let go of feeling I fail to note/notice the less bad, I should seek to simply accept some days are just to be endured etc. It does get tiring doesn’t it.

I really hope that, on the balance of things, there are more less bad than bad days for you, for all of us. Apologies for the diatribe here, think chemo days are very hard to be a part of.
Every good wish to you and thank you for giving me this space today to know that others feel as I do. Take good care

[Aidan]

Hi @judesadventures That sounds very hard. I think we sometimes forget that a serious medical condition affects not just those who are directly affected by the condition but also those others in the person’s family and social circles. One of my aims in the post above was to - hopefully - resonate with others who use this forum and to allow each other to have good days and bad days. To allow ourselves to take full advantage of the days when we’re feeling energised and to do whatever we need to do to take care of ourselves on those days when the physical or mental load is overwhelming.

The same, of course, applies to those living with and supporting those living with a condition.

Wishing you and your husband strength and courage at a challenging time.

Aidan

[MaggieLT]

Dear @Aidan - thank you so much for sharing this post. I know that it will resonate with many people on the forum. I have a different blood cancer but know that good days and bad days ride! You have a great strategy - it’s so important to make the most of the good ones and be kind to yourself on the not so good days.

Take care,
Maggie

[Aidan]

Thanks, @MaggieLT I struggled for some time to grasp the meaning of “being kind to myself”. And then it clicked. It’s a very powerful way of thinking and behaving. I’ve always been quite hard (too hard!) on myself in the past and if there’s one consolation of having a medical condition (and there aren’t many! ), it may well be that it has taught me the value of going a wee bit easier on myself.

[MaggieLT]

@Aidan - I’m exactly the same! And some days I still forget that it’s ok to be kind to yourself.

[Duncan]

Hello there @Aidan, I see you’re newish to the forum so welcome to you, fellow Myeloproliferative neoplasms (MPN) survivor!

Your post caught my eye as I too take hydroxyurea to treat my blood cancer (mine is Polycythaemia vera (PV) but closely related to Essential thrombocythemia (ET) as you likely know) and I’ve also had good days and bad days since diagnosis.

I love what @judesadventures and @MaggieLT have said about tolerating the difficult emotions around blood cancer diagnoses and totally concur. It’s helpful to not feel so alone in tolerating the ups and downs of these sorts of diagnoses.

Just wanted to pop in to say I empathise and noticed the anxiety I’ve lived with due to PTSD definitely increased after diagnosis in 2023. After starting hydroxyurea I went into quite a horrible depression as I experienced terrible brain fog and could not think through stuff I previously would have. My first rubbish haematologist was no help at all and minimised the emotional aspects, as if they were not his business to be treating or even acknowledging. My current great haematologist bears all my symptoms in mind holistically.

I’d say, if a blood cancer diagnosis didn’t cause difficult emotional side effects then that would be a greater surprise! The fact that we’ve been diagnosed with chronic forms of blood cancer that are currently incurable is a big deal. I still have to remind myself of this a couple of years on, especially when faced with others showing their disbelief or nonchalance that I’m walking about functioning mostly normally while also living with a rare cancer. Bonkers!

Don’t know if you’re outdoorsy but for me what helps on the not-so-good days is to make sure I get moving, even if my fatigue only allows a local walk. On days when I have more energy I’ll try to do more and rest when fatigued. Any kind of daily movement gets my blood pumping around, which I like to imagine flushes the chemo through faster like a stronger flowing stream.

I wonder if you could space those double doses of hydroxyurea out so they’re not 3 days in a row? My haematologist suggested I separate my higher dose days out a little to Mondays, Wednesdays and Fridays.

If I may offer a surprising aspect of living with Polycythaemia vera (PV) is that I occasionally forget! I’ll be pottering about and realise not one thought or worry about blood cancer has crossed my mind for hours, maybe all day, and sometimes I’ll wake and not even think about it for hours. I hope you have days like that too @Aidan, it’s quite a lovely emotional respite!

Anyway, I’m glad you found the forum and I hope it continues to be helpful for you. Thank you for raising the emotional side to tolerating Myeloproliferative neoplasms (MPN) and their treatments, I’ll look forward to your future posts @Aidan!

[Aidan]

@Duncan Thanks for the suggestion about perhaps varying the spacing of the “single” and “double” doses of hydroxycarbamide. I’ll put this to my haematologist when next we meet and see what he thinks in my particular case…