Cancer Brain Drain: My Life Is Still A Mess

Seven Years Later…

It’s nearly seven years to the day that I was diagnosed with breast cancer. I’m still here, still NED, as far as I know, so in that regard, seven is a lucky number. However, I’d rather hoped that by now, I would feel a lot more like my old self again. I think I’ve accepted the fact that I will never feel exactly like my old self again. I just thought I’d feel better than this.

I do feel better. I think. That’s the problem, though. I’m not sure I can tell anymore. My ability to think has changed so much, I’m not sure I can trust my self-analysis. I’ve gotten so used to adjusting (lowering) my expectations for my mental and physical stamina, pretty much on an hourly basis, that I can’t tell for sure if my stamina is really any better than it was, say, two years ago, or if my expectations have declined so much that I don’t remember what normal stamina feels like anymore.

In some ways, I wonder if I’ve gotten worse. I decided to write this post because it bothers me that I haven’t been able to write as many posts as I’d like. It’s not for lack of subject matter. I have about a dozen topics on my prospective-post list, many of them partially researched. But getting myself geared up to sit down and write them? That seems to be harder than it used to be.

The big question is why. I think I know the answer. In an article by Dr. Frances Goodhart, clinical psychologist and author of The Cancer Survivor’s Companion, she suggests that the way to deal with decreased mental and physical stamina is to employ “the “3 Ps” – prioritise, plan and pace yourself.” Believe me, I could write my own book on this subject, if I weren’t still such a train wreck. I’ve been prioritising, planning and pacing myself on an almost constant basis for the past seven years. But my priorities have had to change in the last few years. A lot.

There are four factors that have made my life with cancer’s aftermath more challenging all along, but much moreso recently. In the first place, I’m single. Therefore, I have only one income on which to live — mine. Which leads to the second factor, my demanding, draining, satisfying yet often frustrating job as a homecare physical therapist. I do not have a partner, spouse, butler, personal assistant, trust fund, living parents or anyone else who is contributing to paying the bills or maintaining my existence on a regular basis. And but for a brief, insane few months right after I returned to work when acute treatment was done, I haven’t been able to work full time for over six years now. So, that’s factor number three — living on one fifth less income than I used to. The last factor is that I own a house. It’s a small house, with a small yard, but it still requires upkeep. We won’t even mention the car.

For a long time, I didn’t really have the wherewithal to deal with factor number four in any consistent way. Just crawling to work each day, helping solve other people’s health problems, and then crawling home was about all I could manage. For most of the past six years, I had to take neurostimulants to get through each work day, otherwise I was exhausted by mid-morning. When I got home, I could just about feed the pets and myself, make sure I had something clean to wear to work the next day, and crawl into bed. I’d sleep for ten to twelve hours, then do it all over again the next day. If I hadn’t set up automatic bill payment online, most of my bills would probably not have gotten paid on time. If I weren’t a physical therapist, and therefore spent my work days exercising and walking with my patients, and schlepping through parking lots with my heavy work bag, and climbing stairs in apartment buildings, I probably wouldn’t have gotten much exercise either. On my days off, sometimes I was able to channel my frustration, my need for answers, my outrage at pinksploitation, and my sense of the absurd viscissitudes of breast cancer into blog posts. I felt a lot of frustration and outrage. I wrote a lot of snarky blog posts. Meanwhile, my sweet, innocent, neglected little house looked more and more like a trash pit.

And then I got frustrated with the mess. And my job got harder, because working in healthcare has gotten harder. Ergo, I had to shift my priorities. Ergo, more of my limited energy got spent on shoveling out the trash pit, and on trying to sharpen my ailing mental abilities for my job and my patients. And consequently, I had a lot less energy left over to channel my ongoing outrage about breast cancer and turn it into blog posts. Snark needs pep, and my pep was pooped.

Some of my blog pals have been writing posts this past week describing ’15 Random Things About Myself.’ I’ve enjoyed reading them. Trouble is, it takes most of my effort these days to remember fifteen non-random things about myself. I remember my name and address. I still have to think about my phone number sometimes, because it’s not one of those nifty numeric patterns that makes it easy to recall. I remember how to drive, and with a little planning, how to get to my patients’ homes. Mostly, I remember how to do my job. I’m still learning how to deal with being a homeowner. Last winter’s ungodly record-breaking snowfall here taught me things I never knew about homeownership, the consequences of which I am still tackling. I am constantly worried about money and the personal inadequacy thereof. I also make a concerted effort to remember my friends and all the bat excrement they are dealing with. That’s about all I can handle.

Since the beginning of this year, pursuant to shoveling out the trash pit that is my house, I estimated that I must have shredded or otherwise disposed of about 400 or so cubic feet of old paper records and junk mail. A lot of this was shoved into bags or boxes that occupied every room in my house except the bathroom. It was thus arranged because I haven’t been able to cope with it until this year. Most of it was in the room I use as my art studio. However, I had to get it out of the way because I have to have my home insulation upgraded. And in order for the crew to do this, they have to be able to walk from room to room. With ladders and tools and rolls of insulation. And they have to be able to get into the attic. And I have two attics, one over the main house, and one over the converted garage that is my art studio. Oh, and they also have to get at the foundation sills in the basement. So, this entire project was no mean feat. And that was only one part of it, because it also meant that I had to clean out my drawers and closets to get rid of the clothes that I don’t wear anymore, that were hanging on door hooks or folded up or bagged in various parts of the house, because they didn’t fit into my limited closet space. I’ve made a lot of progress. I’m also not done, but I’m about done enough to arrange for the crew to start. I cannot even begin to describe how much mental and physical exertion this has entailed. I find I can last for about 45 minutes before I have to stop and lie down again. Sometimes, I can manage about three or four of these sessions in a day. Sometimes, I can’t manage any at all.

My hope is that, by the beginning of this winter, I will have a much tidier and better-insulated house, with a lot less stuff in it. Then, maybe I can spend less time dealing with it and more time writing and drawing and channelling snark into this blog. I’ll let you know how it goes. Life is complicated. I need a nap.

pixelstats trackingpixel
Share
This entry was written by Kathi, posted on Sunday, July 12, 2015 at 01:07 pm, filed under Cognitive Dysfunction & Depression, Fatigue and tagged , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

23 Responses to “Cancer Brain Drain: My Life Is Still A Mess”

  1. Do you realize that your comment verification is an arithmetic problem? Arithmetic? I needed to use the calculator on my phone.

    I know *exactly* how you feel, being single and living alone as my own sole support and suffering the slings and arrows of chemo brain years after my most recent treatment. I’m sorry you have all this to deal with. It is just not fair, dear one.

  2. Thanks, Knot. Cancer is not fair on any of us. LOL on the verification math! At least we still know how to use calculators! xoxo

  3. Any time you want a 15 year old volunteer helper let me know!
    I have just started shoveling out our house, it’s been stuff eveywhere since my pbm last year. I totally get it. Hugs and kitten kisses KK!

  4. Thanks, Jenn. It’s awful, isn’t it? It makes me even more crazy seeing the perky pink survivor shit. I’ll let you know about that volunteer. Poor kid wouldn’t know what hit her! LOL

  5. Doctors just tell you about survival. They don’t tell you about brain fog or lack of stamina and if they do they make it sound like it will be done soon after chemo. Seven years from chemo and still waiting.

  6. Long goddamn wait, Rosemary, ain’t it? I get to see my primary care doc this week and ‘splain it to him again. At least he tries to help.

  7. I like the arithmetic… :). Sometimes I get very ‘feely sorry for myselfy’ – and then I get smacked back to reality by folks who are suffering and can’t do anything about it. Sorry that you are not back to normal – whatever that may be. If wishes were fishes… xo

  8. We just schlepp on regardless, though, don’t we, Julie? Cuz we hafta. xo

  9. Well, I, for one, was pretty excited to see a new post from you.

    Thank you, as always, for your eloquent honesty.

    K

  10. Thanks, Katie. I was glad to get this out, sort of like a palate cleanser. Now, maybe I can get to a few more main courses on that blog-post to-do list. 🙂

  11. Cancer sucks. Cancer’s aftermath sucks. I wonder if anyone ever gets their life back after cancer. I know your experience is different from mine for many reasons, one of them being I am not single. Being on your own has gotta be very hard at times for a lot of reasons. I know I am lucky to be able to turn to writing now. I couldn’t keep teaching. Just couldn’t do it. Life is always complicated, but throw cancer into the mix and well, you know… I am not the same either. Never will be and that’s a hard thing to accept sometimes. Great to read a post from you whenever you write one. And very great indeed that after seven years you are still NED. xx

  12. Nancy, I have wondered if you were still teaching at all, and I’m sorry that you had to give it up, yet relieved that you could afford to. Most days, I feel like I’m just hanging on by my fingernails until I can afford to retire (another worry) or at least work less while I collect my meager pension and Social Security. None of this is easy, is it? xxoo

  13. So relieved to read this. I can’t seem to trust my self-evaluation either. I know my energy level is lacking too, but never sure if that is normal or what. And I share many of the same issues–single and my work, which is physical, takes up so much energy! Lately, I’ve been behind and my priority has not been writing, or even reading much. Good to know I’m not alone.

  14. You are so not alone, CC, but I suspect the many of us who are out there don’t have the energy to write about it. Man, this does get old. Hugs.

  15. I am glad I still exist after cancer but I find it difficult to know where I belong making it hard for me to be like I used to. It’s like I am still trying to figure out what just happened and how I am supposed to deal. I also feel older and tired after treatments. I am not sure there’s a solution for this, we just have to take one day at a time. Even if our doctors try to warn us about what happens after cancer, the only way for us to know how to do survivorship would be through our experiences. We have to keep on going, I guess.

    Congrats on your almost 7th year! I wish you many more.

  16. Thanks, Rebecca. Right back at ya. There’s all sorts of advice out there about how to deal with all this, but at the end of the day, it’s still hard and there’s no one answer, is there? Everyone’s experience is different, yet we all have a lot in common. And all we can do is keep putting one foot in front of the other. And to be honest, I think, especially with ourselves. Can’t get through the forest if you pretend it isn’t there. xoxo

  17. […] happy to see Kathi back blogging again – catch up with her latest […]

  18. Oh Kathi, I’m so sorry about all this collateral damage. Cancer stinks and its aftermath isn’t pretty. One is never the same once a cancer diagnosis hits. Believe me, you are exceedingly intelligent, even if diagnosis and treatment have worn your brain down. You’ve got to be smart to incorporate your special snark, which I love.

    xoxo

  19. Thank you, Beth, and definitely back atcha. You must have had a lot of good working brain cells to begin with, because even after cancer, your writing is perceptive and insightful and honest. Blog-sister love fest! xoxo, Kathi

  20. Kathi,

    I still sleep a lot and I don’t work the hours I did previously. There are some other life issues that kick my butt, too, not just cancer. As for myself, it was probably better not to know how long the recovery period was. There was a light at the end of the tunnel for when life could get back to normal. Even though it wasn’t entirely true, it was a useful bit of optimism, really. I also wonder if my expectations were too high. Yes, I used to keep my house and yard more organized but I was also maintaining a house, not getting one that had been neglected for a significant amount of time and having to get it back into shape. That’s a campaign that takes much more energy.

    -Elizabeth

  21. It’s all such a bear, Elizabeth. I am feeling better, though, even in the six months since I wrote this. The insulation is done, there’s less junk, and I had guests for dinner on Christmas and New Year’s — something I’ve not been up to for some years now. And I lost 5 or 6 pounds by laying off sugar. Ever hopeful. Thanks for your comments. It’s reassuring to know I’m not alone in this.

  22. It is socomforting hearing I’m not the only cancer survivor with extremely low stamina and high levels of fatigue. All you women who are working outside the home because you’re the sole provider, you amaze me, and I ache for you. I don’t work outside the home, and I still find every day such a challenge. Two years post mega chemo and 2nd degree burn radiation, my outward appearance is improving. Yes, I’ve aged quite a bit, but to my friends and family I look good enough to not realize I’m struggling to find the oomph for every day living. I have four married kids and 9 grandkids. While I am so grateful for each one, it’s impossible for me to “keep up”. I wish I could accept myself and my new normal. I wish I didn’t feel “flawed” and “disappointing” when I’m in busy social settings. I’m so tired of being tired. I’m grateful you all understand.

  23. It’s a constant balancing act, Pam. And many of us live with this forever. But we do understand. xo

Leave a Reply