One thing that I think healthy people don’t completely “get” about illness is that it takes soooo much of a person’s TIME.
I’ve often said I felt like the year (and few months) of treatment was a “lost” year. I was in the throes of cancer treatments for both my 39th and 40th birthdays. I take the big picture view of how cancer cost me a year.
Lately I’ve been thinking of it in the day-to-day sense of time. The hours spent getting infused. The many, MANY hours in the waiting rooms. The lost day that was my surgery. My lumpectomy was scheduled for 10 AM; there was an emergency surgery, I did not go under until after 3 PM. That is a long time for me to fast. To say I get hangry is an understatement. As if having a disfiguring surgery were not horrible enough…shudder. It is hard for me to remember, much less write about, that terrible day when my nipple was removed.
My point (and I do have one…) is that what does not often get discussed is the sheer loss of hours involved in cancer, or any illness really. We humans often mutter, “where does the time/day go?!” as we run to the grocery store, work, whatever. Now, compound that with the time it takes to get to the medical or treatment centers. Add in the wait times. Add in treatment time. Those first 4 rounds of chemo (ugh, the Red Devil) were lost days. Then for me, the third or so day after when nausea would put me in bed all day. Then, there was the first infusion of Taxol—at least 6 hours, because it has to go in sooo slowly while the nurses watch for the allergic reaction (none for me, thank goodness). Then, what, 11 more of those infusions, I think? Too lazy to look up how many I had. Plus I had Herceptin with those. Then the 2 or 3 hours every 3 weeks of Herceptin for the rest of the year, PLUS add in radiation (thankfully short 15 minute appointments, 6 weeks, 5 days a week). All that time, Time, TIME! It is just gone.
True, I slept through every single infusion; I did not feel like doing anything anyway, so is it really lost? Well, yes, because if I had not been sick with cancer, I would not have felt too sick to do anything. I could’ve been doing something, anything, else—something fun! Or maybe I would’ve just been torturing myself with work.
Sure, these days I “waste” time looking at cat videos and other nonsense on the interwebz (especially when maybe I could be writing posts). But I can CHOOSE to do that. I had no choice in cancer. Well, I guess I could’ve elected to not treat, and maybe died, and then this whole pondering post about time would not matter. So am I wasting time these days? Or is it OK because spend those minutes laughing my head off?
I spent quite a bit of time traveling, hanging around in waiting areas of medical facilities this week—not for myself, but for my business, which is much more than a job, more than a source of income. I have chosen to help my client/patient/friend undertake treatment this year, and it will take sooo much of our time. We talk about all the wonderful things we plan to use our time for after she begins to improve. So we wait, we bide our time. We will use the waiting and infusing times to plan how to use our future time in the service of making ourselves happy.
And if some of the medical wait times are used to watch stupid pet videos, and it makes us happy—that time is not wasted either.
I’ve often said I learned all the “wrong” or unacceptable lessons in cancer (will write a post about it one of these days, when I stop goofing around watching cat videos). So I will not say this post is a lesson, it is more of a warning. To anyone lucky enough to be healthy (no cancer, no other illness), you may think you don’t have enough time in a day. You may think the cost of illness is health. But the cost is time as well.
“Dost thou love life? Then do not squander time, for that is the stuff life is made of.” – Benjamin Franklin
anotheronewiththecancer 
It is lost time. Even when I was awake and relatively well, there is so much I don’t remember from those years of treatment. I am especially saddened about the last year of treatment in 2011 when my kids were 9 and 11. I lost a year of their lives as well as my own. They remember that year much better than I do. Great post. It’s got me thinking and trying to remember more.
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Yes, this is new-ish territory for me, as the caregiver who watches days drift into months, into…I think it is hard for anyone, the kids, the spouse…I am learning to grab moments and time for joy, however small. Even if the time is “bad” because it is time spent treating a disease, it is still time alive, time to spend in joy.
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It is lost time and I agree with Sharon’s point. In a sense the time is lost for our family members, too, during the intense treatment and sometimes beyond, as their focus becomes that of caregiver(s). Cancer sucks a lot away from us, including time. Thanks for the post.
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Thank YOU. Funny I’d never really considered it this way–the moments and hours spent in treatment and how they matter to us all–patients and caregivers. Time spent in treatment is the hidden devil of illness.
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Great post!! xx
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Thank you so much! I was kind of going off the cuff this AM writing it–but it matters greatly to me.
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This is true even of having a BRCA mutation–the surveillance, doctors appointments, time spent finding a parking spot and waiting in paper gowns, etc. add up fast. Then there’s the time lost to stress (with its associated loss of concentration and motivation) and researching options. Then there’s all the time I spend on the phone trying to straighten out appointments or bills. Not the mention that the stress can ruin your social life and/or friendships, so you lose leisure time too. And that’s all WITHOUT a diagnosis. I assume it’s exponentially truth for women with a diagnosis.
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Oh man I did not even take into account the time I spend worrying (probably because I tend to do that while driving–not good!). And yes, this is an interesting area: those like yourself, who must spend time monitoring health, waiting for signs of illness. A whole other, unpleasant dimension I forgot. How much time have I wasted worrying about my next scan? How much time do BRCA positives spend on this? Or the scarred former patents like myself? My next mammo is in a month and I know I will end up with MRI, and I think: how can I “save” time, get the doctor to just skip the mammo, go straight to MRI? Yes I know that is not the approved “way” but it seems more efficient to me–less tests anyway. Grrr time wasted…
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yup, CC, you are right on target about “time”. I think about people who are sick and have no advocate and the amount of time they spend trying to understand procedure instructions, meds, insurance snafus, those who have to work 2 jobs just to survive, those who have to depend upon mass transit to get to their appointments. I can only imagine all the time they spend just getting to a doctor appointment only to have to face sitting in a waiting room, feeling like a nervous wreck when the doc is overbooked, wondering if they will miss their bus, be late for their next job, be afraid they will be fired? all those losses of time, their consequences, the stressors that pile on and on – while they are SICK.
this was a really thought provoking post about something we don’t often talk about, and here we see it in so many varied dimensions. I really appreciate both your post and the thoughts of the other commenters! thanks!
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Right?! All these comments make me realize just how much time it takes to be sick. Ugh, the hours wrestling with the insurance companies–we’ll never those back! I was thinking too about the time spent waiting in paper gowns–yikes, recently spent an hour in one waiting for my GP who was running behind. A very uncomfortable hour.
Illness adds so many tasks to our already overloading schedules–makes the to do lists too overwhelming!
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I am missing lots of time. I need a lot of rest where I am physically unable to do more than lie in bed or on the couch and knit/read/watch tv/crossword puzzles/surf the web for hours. Yesterday for example we went out for about 2.5 hours and I was exhausted. I spent the rest of the day in bed and wasn’t sure I was up for cooking dinner before going to bed early. Tuesday will be another lost day when I take my father for one of his monthly infusions and I will be lucky to be home by 2pm.
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Oh you’ve made a good point–a day in infusion–you might as well just cross that day off, right? And then when we do spend time on things, maybe it takes us longer to do stuff. Then enjoyable things–which yes take time, but it is good time–then maybe we don’t get to do those things. Cooking dinner is a “fun” activity for me, and it sucks to be too tired from other stuff to do the things we want to do!
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I’m so glad you posted about this “cancer lesson” because it’s so true and a good warning for those beginning treatment. I’ve often said being sick is a full-time job. My cancer year made me appreciate how difficult it must be for those with chronic illnesses whose lives are full (emptied?) of this kind of lost time.
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Thanks! It was an eye-opener for me this week to really take stock of all the moments and hours illness takes from us to do what needs to be done. A factor I think, gets overlooked too much. Thanks!
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The hours on hold with doctors offices and insurance are the ones that frustrated me the most. But -yes – all the lost time – I think sometimes we forget to mourn that.
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Oh, sorry for the reminder! Yeah, it is all that waiting for others that is crazy-making!
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I came across your blog and I can relate to a lot of what you say, especially on the topic of “time.” That year went by so fast for me, with all the Doctors’ appts and treatments. Plus I was trying to work too – it wasn’t easy to do it all. I remember not doing anything fun that year. I was so focused on recovering and taking care of business that I remember looking out my window in the summer and asking myself, “what month is this?” Yes, it gets so crazy that I lose sense to time. Could have been chemo brain too – who knows! And the follow-ups appts I have now take a lot of my time. I see 13 Doctors a year now, which isn’t fun but I feel “safer” this way. The free time I do get, I make sure to fill it up with some enjoyment. I hope you get more breaks now, to do what you love.
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I find it funny to look back and think where did the year go–which makes it seem like it went by quick. But that is NOT how it felt at the time. Felt like I’d never be done with all the treatments. I’m not much on ceremony–like ringing the bell when finished chemo. So I just made a list of my last 10 or so Herceptin treatments, and enjoyed marking them off after each one was completed–like a to do list.
Well, I work a lot now, which is not always “fun”, but it beats going to any medical appointments!
Thanks–glad you found my blog.
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