There’s been a few good resources shared here recently about the changes in life and energy levels after treatments, and I wonder how people communicate that to their network, how to ensure you’ve got the time and space to heal and, well, live & manage.
I think about it like “sustainable pace” I’ve heard for work teams - getting into the flow of only taking on what you can manage - and, I imagine, making sure you’ve got wiggle room for when the unforeseen inevitably crops up and knocks you over.
And I’m starting to get a feel for my own internal rhythm or tempo - which is definitely slower than it used to be, it’s running at kind of a slow waltz I think. If I keep myself there I can chug along fairly well. But I get thrown off my groove if someone wants me to join their quick brass-band march, and it’s hard to get back in my swing.
I’m not sure what language to use to explain this to people - the word “tired” doesn’t really capture it, and is over-used, and invites unneeded advice. “Weary” doesn’t seem appropriate either. I’m not taking it easy; I’m taking it at a pace that works for me.
Just trying to figure out how to set expectations I guess. Maybe just thinking out loud but thx for listening 😊
@Ariadne love this!
Absolutely! Our new normal often is at a different pace or tempo than before, and finding what’s sustainable for you is so important.
I find fitness wise I’m pretty good now (nearly 3 years out of treatment) but I can still overdo it and then I pay for it. I’ve learned to plan in rest days and to enjoy time curled up with a book or a film to give my body rest. Its so easy to be constantly doing things!
Thanks for sharing your thoughts xx
Good topic @Ariadne and timely for me.
I have just started by graduated return to work after 18 months away. I worked a short shift on Tuesday and was mentally overwhelmed but physically ok. I worked the same shift today and came home exhausted.
I am trying to figure out how to rest…I seem to have a lot of energy at some points and try to take advantage of that energy and then I crash. I need to find that sustainable level.
I think you both dug a nugget out here - watching out for overdoing it when feeling good. That’s a big mental adjustment because yep, I find I can get a lot done on Mondays, and may put in an extra hour or two, then I’m progressively more tired through the week.
Need some mental discipline to take breaks and “know my limit, play within it” 😉 I’ve also heard about the practice of eating until you’re 80% full, as a way to avoid overeating - may try that mantra for mental / physical energy too!
@Sadie12 I hope you find that sustainable level.. I wasn’t off as long as you, only a couple months for some radiation, but even so - my dad passed of cancer the year before, my husband had heart issues the year before that, and through it all our teenager has had health and life issues. So I was feeling pretty spaced out and needed to make some changes.
When I went back to work I used vacation days to do 4-day weeks and started asking to switch to part-time more permanently. It took about 6 months before that was finally official. That helped - I had that day every week to rest up, do my thing, and start exercising to rebuild my stamina. The pandemic made that harder - but the 4-day week is helping me manage at least, and hopefully this year I can work on my stamina again.
Hope you get there, one way or another - and hopefully this whole pandemic is opening workplaces eyes to how we can make workplaces more accommodating generally. That’s overdue.
Hi there, What an insightful post, as are the responses?❤️😊. My husband is in the middle of treatment and doing very well. I find myself thinking about life after treatment and wondering what we/he will be able to do.
We’re both retired so not trying to build up to the previous pace at work but just thinking about life down the road. Too early to think about that, right!!?
Until I retired, I had one foot in each of two worlds: fast-paced, multi-deadline work, and the crafting world my grandmother taught me, with knitting, embroidery and baking. Her husband (a third generation farmer) was industrious, and he passed that work ethic on to their son, who passed it on to all of his kids.
When Dad got cancer (lung), he had to learn to slow down. He was 78, for heaven’s sake! Since he’d retired 16 years earlier, Mom kept trying to get him to slow down, even when a chronic pain issue tried to do it for him. She was so frustrated that he would overdo it one day, and spend the next two days under her feet, grumbling about the fact that he couldn’t “do” anything. When he got cancer and entered treatment, I tried to reassure him that it was ok to let his body deal with what it needed to do - that just because he wasn’t “doing anything” by his standards didn’t mean that he was doing nothing: this was a time in which his body needed to do things.
My mom loved crafting, too. She and I maintained that when we were doing our “slow work,” we were still doing SOMEthing - we just weren’t doing SOMEthing quickly. Many years ago, I read a book about finding balance in our lives. Not only did crafting offset my deadline-riddled day job, it also filled a need I believe we all have to express ourselves creatively. Over the years, I’ve met many people who work in technology, but live in a log home, or have a high-pressure job but do woodwork on the weekends.
I don’t know if you’ve heard about the “slow movement.” It is basically learning to pull our “life speed” down by doing some things slowly and with intention. “Slow stitching” is basically embroidery using quilting technique with larger thread. There is a book called The Artist’s Way, in which the author advocates journaling every morning - in longhand - because she believes it helps the brain connect us to directly to our motor skills and that this connection can help us connect to our creative self. She also maintains that when we do mundane tasks like dishes by hand, or gardening, we give our minds space to problem solve and work on complex issues “in the background.”
Just last night I watched a documentary called California Typewriter - it was produced by Tom Hanks, who is, in a moderate way, a typewriter aficionado. One of the main themes throughout the documentary was how computers have sped up our lives, and made it hard for us to write without the temptation of editing as we go.
So, perhaps the response you are looking for when “tired” and “weary” aren’t the right fit is that you are partaking in the “slow movement” - and that’s OK, from my point of view!
#Balance #lifeaftertreatment #fatigue
Crafting is such a great way to occupy ‘the waiting time’ for test results, next steps, etc. It keeps my hands and head occupied. My husband received a call on Tuesday to have a laparoscopy done on Friday at Mt. Sinai. The call we’ve been waiting for! As he says, he is anxious re the results but waiting for the call is hard too. So on we go. We’ll soon know whether he’ll have the big surgery as the surgeon calls it, stomach removal, or not. His oncologist says his response to the chemo was 1/100 so hoping for more good results. Fingers crossed.
@Cynthia Mac these are great ideas - good timing too, I just started an oil painting class for fun and relaxation - and per your advice will focus on the mindfulness while doing it 😊
I think I need to extend that to my work life too - not get caught up in the drama, but prioritise a few good outcomes.
Guess it’s a bit like music - when you practice a new piece, you do it at a slower speed in order to master it. So I’ll practice life at a slower speed too.
@Ed’s wife glad you’re getting more information to move forward, waiting is certainly the hardest part.
I hope he continues to do well - I think part of my backslide was the pandemic - I couldn’t keep up the activities I’d started to regain my stamina, and we had a bunch of added stress with our son & high school. Focusing back now on my physical health, and his mental health, and seriously dialling back on outside “obligations” is really helping.
@Ariadne I was also wondering how to explain properly to people how I'm feeling. I agree, tired just doesn't seem to cut it. Cuz I'm not “tired”. Fatigued? But don't people just think you're tired if you say fatigued? Perhaps just running low on fuel? I wonder if they'd understand that? Or telling them my social battery is full. Lol Maybe they'd take offence to that.
@PinkDaze I used to say my batteries needed recharging…
My husband got used to me hitting the wall - during chemo I went for a snowshoe hike for his birthday, we had a campfire and made hot drinks, hiked back to the cars and went to a local restaurant for a meal. I was talking one minute and asleep with my head on the table the next. After that when I said ‘I need to go home now’ or ‘I need a nap’ he didn’t question it.
At work when I was easing back into it I found I couldn‘t remember what had been said at the beginning of a meeting by the time we ended. I would take notes and told folks I had chemo brain and they would have to remind me of stuff. Everyone was fine about it.
The low battery thing is useful - i still use it now when I’ve overdone things. Everyone knows your phone doesn’t work when the battery is dead.
We were discussing this the other day…hubby overdoes things often, as do I, and we’ve noticed that we benefit from days taking time to sit and rest with a book or watching films. We were camping 2 weeks ago and after a hike it was so nice to sit in our woodstove warmed tent with cups of tea and a book recharging…we both agreed, we need to do more sitting around. We have a plan to build a pergola in the garden where we can hang hammocks and chill - would have been perfect during chemo!
Laparoscopy was done on Friday. Procedure went well. They did a cell washing test to see if cancer cells are floating around in stomach. If so, no further surgery. Now we wait for results. Has anyone had this test done? Wondering how long you had to wait for results. Dr. said maybe by end of the week but with Easter next weekend I expect it will take longer. I asked about alternative to stomach removal. Doc said chemo, different from first time. Anyone on long term chemo to keep stomach cancer at bay?