Greetings after my 11th round of chemo! Just five left: one last Taxol (!!!) and then four bi-weekly ACs. Since starting chemo I thought that my first AC would fall on my birthday (November 26), but my oncologist just gave me the amazing news that I would be taking two weeks between the two regimens and only starting AC on December 3! How amazing is that? I can’t wait to do all my favourite things during the break!!!
The main side effects I experience from chemotherapy are fatigue and low energy. As much as I hate feeling limited in what I can do, I’m trying to take it as a learning opportunity. I’m learning that energy is a finite resource that needs to be spent intentionally on activities that have the highest utility. I have no choice but to reprioritise. I’m relearning the definition of productivity.
Usable Hours In a Day
The biggest challenge I still struggle with after 10 weeks, is understanding that I no longer have the same number of usable hours in a day compared to pre-cancer Magda. On average, a healthy person has 10 to 14 usable hours in a day. That’s time not spent on “maintenance activities” (like sleeping, recovery and addressing basic bodily needs - eating, showering, bio breaks, etc). This time can be used for working, running errands, socialising, enjoying life - basically productivity and pleasure.
A person who is sick or in treatment has a reduced number of usable hours in a day, because the “maintenance” chunk is a lot bigger. Most days after chemo I need to be able to dedicate several hours in my day to rest and recovery. If I haven’t slept well or if I’m feeling exceptionally poorly, my number of usable hours drops even further. On some days, maintenance activities will eat into my usable hours, for example when it takes more energy than usual to take a shower. On my worst days, the number of usable hours I have is around 2. On better days, maybe 6. I have to be very intentional about how I want to spend those 6 hours.
At the same time, my appetite for accomplishment hasn’t reduced in line with the number of usable hours I get. If anything it’s probably grown as I try to prove to myself and everyone around that cancer cannot knock me down. I’m used to being able to spend 10 to 14 hours “productively”, but I can no longer physically stay standing for so long. The result is internal tension, stress and frustration, having to cut out 4 to 8 hours of stuff I normally would have no trouble taking care of.
How do you decide what makes the cut and gets to stay on the list for the day?
If I have the energy to be scientific about it, I will try to assess the utility of each activity through a few dimensions, in order from longer term to shorter:
Does it bring me closer to my long-term, post-cancer goals? (e.g. writing my blog or working on my social media is aligned to my long-term goal of building a support system for women who are at the start of their breast cancer journey)
Does it help me reach the goals I’ve set for myself for this week? (e.g. baking cupcakes for the nurses to take with me on chemo day)
Does it make me feel loved? (e.g. video calls with friends or family will meet that need)
Does it make me feel good? (e.g. going for a walk, taking a nap or a yoga class will help address that)
Does it make me feel just a bit better just right now? (e.g. eating pizza)
By the way, did you realise that making a list for the day is also an activity that requires energy? Sometimes it doesn’t make the cut and that day I just spend my time doing whatever makes me feel ok in the moment. Mostly napping or eating pizza.
Even as I’m writing this, I cringe, cause is this what my life is now? I’m debating the utility of eating pizza or going for a walk, and trying to prioritise one over the other.
This is where being kind to myself comes in. I need to explain to myself over and over again, that I am doing what I need to do to recover and heal.
Running around like a maniac, trying to prove to myself that I can still be productive, will not make me better.
Ergo, eating pizza and taking a nap should be prioritised over writing my blog.
I try to keep this in mind planning my week. Luckily by now I am able to confidently anticipate the number of usable hours I will get from each day in the week. I can expect that on Mondays I probably won’t do much beyond napping, so I don’t put pressure on myself to plan anything. On Thursdays I feel almost like my normal self, so I can plan more activities and take them from the top of the list (i.e. more long term, more impactful).
Friday to Thursday
Since starting treatment 10 weeks ago, my life has been paced weekly, with the new week beginning on Fridays (chemo days) and ending on Thursdays. The patterns that emerge with regards to the side effects, energy levels and mood swings I experience are quite remarkable - almost down to the same hour each week. Thanks to this I am able to plan my activities in advance and optimise my time and energy, knowing when I will need to rest, but also when I can go out, hang out with others and enjoy life to its fullest (given the circumstances).
Day 1 (Friday - Chemo Day)
Energy levels: 🔵🔵🔵⚪️⚪️
Physical state: 🔵🔵🔵⚪️⚪️
Sleep (the prior night): 🔵🔵🔵🔵🔵
Mood: anywhere between ⚪️⚪️⚪️⚪️⚪️ and 🔵🔵🔵🔵🔵
Usable hours: around 6, but they are all used up on getting to and through chemo.
Side effects experienced:
Upset tummy following treatment, usually goes away within an hour or two.
What the day usually looks like:
Pre-chemo: I try to get enough sleep to feel fresh in the morning. I will wake up and start getting ready for chemo. My chemo bag is already packed the night before and my outfit is prepared and laid out. I make sure to have a nice breakfast and a big cup of coffee. I try to look nice for treatment (it just makes me feel better), so I’ll spend some time putting on make-up and jewellery. Once I get to the cancer centre, I get my vitals checked, see my doctor to get cleared for treatment, and then go into the infusion room to get hooked up to the IV and start my meds. The session takes between 1.5 to 5 hours, depending whether it’s only Taxol, or the full Taxol-Herceptin-Perjeta cocktail (more details here). During treatment I will usually post some stories on my Instagram, chat to the lovely nurses and sometimes take a nap if there’s time. After the treatment is over, my husband picks me up at the medical centre with a large cup of Starbucks and we go home.
Post-chemo: The post-chemo tradition is burgers and a peanut butter milkshake, and then spending the day chilling, watching netflix and responding to messages. My mental state can be quite fragile on Fridays, so I try to avoid mindless scrolling that might be triggering and take me down a rabbit hole of doom and gloom. Thankfully on chemo days I get a lot of love and support from friends and family, and in my socials, so I happily spend a large part of the day replying to messages and feeling all the love 🥰 I usually go to bed really late, because of the steroids I receive during my infusions. They protect me from having an allergic reaction to the chemo, but they have a strong impact on my body for a couple of days following treatment.
Day 2 (Saturday - Buzz Day)
Energy levels: 🔵🔵🔵🔵🔵
Physical state: 🔵🔵🔵🔵🔵
Sleep (the prior night): 🔵⚪️⚪️⚪️⚪️
Mood: 🔵🔵🔵🔵🔵
Usable hours: around 12
Side effects experienced:
Usually absolutely none! 🥰
…except for not being able to sleep
What the day usually looks like:
Saturdays are simply amazing, despite the lack of sleep. After going to bed really late on Friday, I’m usually already awake by 4 AM. This is because of the steroids. The early mornings aren’t so bad - the whole city is still asleep and I can get some uninterrupted writing time while sipping coffee. We live right next to the Sultan Mosque in Singapore, and on Saturday mornings I can hear the Islamic call to prayer from our balcony about 2 hours after I wake up. I’m not religious, but I’ve always had a deep appreciation for the peacefulness and energy of this particular ritual.
The steroids keep me buzzing all day, so I am very high-energy on Saturdays. The day is so much longer because it starts so early, and I’m not really tired by evening either. I feel like I can do so much. Those who knew pre-cancer me know I get a kick out of running around and checking off All The Things from my to-do lists. Saturdays remind me most of what my life used to be like before cancer, and I honestly love every minute of the day.
I’ll try to leverage the energy and buzz as much as I can by going out, eating out, meeting with friends, enjoying exploring the city, racking up activity points and just really seizing the day.
Day 3 (Sunday - Come Down Day)
Energy levels: from 🔵🔵🔵🔵🔵 in the morning to 🔵⚪️⚪️⚪️⚪️ in the afternoon
Physical state: 🔵🔵🔵🔵⚪️
Sleep (the prior night): 🔵🔵🔵🔵⚪️
Mood: 🔵🔵🔵🔵⚪️
Usable hours: around 6
Side effects experienced:
None until about 4-5 PM.
Afterwards fatigue starts to set in, with a bit of nausea, blurry vision, hot flashes and mood swings.
What the day usually looks like:
On Sundays I can usually get a full night of sleep (probably because I spend most of the day running around like a maniac). Up until about 4-5 PM, Sundays are just like Saturdays with regards to energy levels. I try to squeeze as much as I can from the day, going out for brunch and enjoying some more activities outside.
In the late afternoon the steroids start wearing off, and I lose all the buzz that’s kept me going. At this point it’s usually a good idea to be back home. I change into sweatpants, wrap myself in a blanket and will usually spend the rest of the day just resting. I can get easily triggered, so I’ll put my phone on airplane mode and ignore it for the rest of the day. I will go to bed early and usually am able to sleep through the night easily.
Day 4 (Monday - Kill me now)
Energy levels: 🔵⚪️⚪️⚪️⚪️
Physical state: 🔵⚪️⚪️⚪️⚪️
Sleep (the prior night): 🔵🔵🔵🔵🔵
Mood: 🔵⚪️⚪️⚪️⚪️
Usable hours: around 2
Side effects experienced:
Fatigue and low energy
Upset stomach
Blurry vision & dry eyes
Hot flashes
Muscle, bone and joint pain
Numb fingers and toes (peripheral neuropathy)
Mood swings, depression, anxiety, panic, guilt - just a bunch of really bad feels.
What the day usually looks like:
Mondays are usually the lowlight of my week. The steroids are gone, but the chemo is still in my system for about half a day (it takes 72 hours for the drugs to leave my system entirely). That combination means I am exhausted, I get hit by the side effects the most, my mood is fragile and the whole day usually just sucks.
This is the day I will usually spend napping and feeling sorry for myself. Yeah, it’s pretty much a pity party for one. I get triggered easily, but I don’t have the self-preservation to stay offline, so I will scroll myself into a deep black hole of googling my prognosis, gloomy statistics and side effects I am experiencing. A lot of my time is spent pondering the difference between bone pain from the chemo and bone pain that might be from the cancer metastasising. I will sometimes also overanalyse my blood test results and convince myself that I am definitely on my way towards neutropenia, hypercalcemia or liver and/or kidney failure (none of this is even slightly true). It’s an absolute fucking nightmare.
With all the above happening, why don’t you just distract yourself Magda? Well because I don’t have the energy to do anything, the muscle pains I experience mean it’s not fun moving my body and the blurry vision I get impedes even watching Netflix. I really want to do stuff, but I just can’t, and that sends me into a spiral of anxiety and guilt for putting pressure on myself, when I know I should just be resting, but I can’t rest cause I feel useless, and on and on it goes.
Mondays really, really suck. Luckily it’s just one day that ultimately ends, and after that things get so much better!
Day 5 (Tuesday - back to life, sort of)
Energy levels: 🔵🔵⚪️⚪️⚪️
Physical state: 🔵🔵🔵⚪️⚪️
Sleep (the prior night): 🔵🔵🔵🔵🔵
Mood: 🔵🔵🔵⚪️⚪️
Usable hours: around 4
Side effects experienced:
Fatigue & low energy (but better than the day before)
A bit of hot flashes
A bit of muscle, bone and joint pain
A bit of peripheral neuropathy
What the day usually looks like:
Tuesdays are so much better! I wake up feeling energized and I need to stop myself from planning too much stuff for the day, because Tuesdays are still wobbly. Sometimes despite best efforts I just need to spend the day resting. Sometimes 10 AM Magda will start a big project for herself, but 1 PM Magda will lie down for a minute and just stay there for the rest of the day.
By Tuesdays my side effects are mostly gone, but the fatigue is still there. I can usually already do a yoga class, so I either do one at home in the morning, or I’ll sign up for one in the studio that evening if I’m feeling up for it. By now I know I won’t have enough energy to do anything else besides the yoga and maybe one more activity, so if the yoga is planned for that evening, I know I need to rest for a few hours before that. Do you know how long it took me to understand that energy is a finite resource and I need to plan how to spend it? Answer: it’s still a work in progress.
My eyes are ok by today, so I can start doing some writing and sketching out some ideas for my blog post that week. I’ll do some research, write out some bullet points and just get my brain working a bit.
Day 6 (Wednesday - how is it already the end of the week?!)
Energy levels: 🔵🔵🔵⚪️⚪️
Physical state: 🔵🔵🔵🔵⚪️
Sleep (the prior night): 🔵🔵🔵🔵🔵
Mood: 🔵🔵🔵⚪️⚪️
Usable hours: around 6
Side effects experienced:
Fatigue and low energy
Some anxiety & frustration as I realise the week is already ending
What the day usually looks like:
Wednesdays are usually pretty much back to normal, but I still need to pace myself. I’m usually quite frustrated with myself on Wednesdays because I realise my week is already ending and I haven’t done as much as I would have liked to. On Wednesdays I’ll usually try to force myself to do All The Things, make a list of 30 to-dos for the day and then get mad at myself when I tire myself out after crossing out 5 of them.
Nevertheless, on Wednesdays I am usually able to do something a bit more social and either go out for date night with my hubby, or meet a friend, or at least have a video call with a friend or my parents back home.
Wednesdays are not consistently ok though, sometimes the fatigue can just hit me out of the blue and I will need to cancel anything I have planned for that day.
Day 7 (Thursday - end of the week again)
Energy levels: 🔵🔵🔵🔵⚪️
Physical state: 🔵🔵🔵🔵🔵
Sleep (the prior night): 🔵🔵🔵🔵🔵
Mood: 🔵🔵🔵🔵🔵
Usable hours: around 7
Side effects experienced:
Usually none
What the day usually looks like:
Thursdays can be a bit bi-polar! I’m usually like my usual self by then, but I still need to pace myself so I don’t end up exhausted going into chemo the next day. I usually end up spending a bit of time out of the house on Thursday, cause I need to go to the hospital to get my blood work done ahead of chemo, and then I will usually try to leverage being outside.
I tend to cram in a crazy number of activities on Thursdays, cause I try to compensate for the previous couple of days when I am recovering from chemo and spending most of my time resting. I will usually feel up for doing another yoga class, and I can get through a full vinyasa class at about 80%. I can usually do some social stuff as well. I’ve even been able to host a few dinner parties on Thursdays, so it can’t really be that bad, right?
Thursday evenings are spent prepping for chemo the next day: I’ll pack my chemo bag, plan and prepare my outfit, make a list of questions for my doctor and take inventory of any meds I need to get refilled. It reminds of my pre-cancer life, when I would spend Sunday nights planning and prepping for the week ahead, listing out my goals and tasks for the next five days, reviewing my calendar and clearing out my inbox. The broader context might have changed for my life, my weekly calendar has shifted by a few days, but my personality is still the same!
Takeaways for Post-Cancer Life
I have one more week on Taxol ahead of me, followed by two months of a new chemo regimen. I’m pretty sure I’ll have to make further adjustments, because the new drugs will likely hit me a lot harder than Taxol has so far. I’m hoping in that time I will finally manage to accept that I need to pace myself, let go of guilt and be kinder to myself. Even during chemotherapy I’m looking out for learning opportunities.
This is my chance to rethink what it means to be productive.
After my treatment is completed, I still won’t be back to pre-cancer me. I will still have a bit of chemo brain, I’ll still need to rest more, I will have to spend more time monitoring my health. But even with all that, the lessons learned through treatment might stick for longer.
Will I still want to prioritise the activities that help bring me closer to my long-term goals? Absolutely.
But will my long-term goals revert back to what they were before my cancer diagnosis?
