Living with cancer and living well is the theme of this blog. Somewhere along the way I’ve gone from living well, to thinking I’m living well, to realizing I am living unwell. When did this happen? How exactly did I get here? It sucks. Can I get back to living well or is this it?
Quality of life (QOL) has been a phrase I’ve always hated. To me it means treatment is done and it’s an attempt at empathy to say the focus is now on comfort. I know QOL can show up from day one of treatment, however, some of my preconceptions are carved in stone. I am a fan of comfort, but also would like to stay on an effective treatment. Besides, I want both. It needn’t be one or the other.
Enhertu was a relentlessly vicious treatment without an ounce of comfort. Nausea followed me everywhere. Either I couldn’t eat when I wanted or wasn’t hungry. Weight dropped off effortlessly. Most of the time I felt a heavy, flattening fatigue. I slept a lot. Why not, it lessened the nausea a degree.
Here is a plug from my fictitious sponsor Ensure. Ensure is delicious, especially the vanilla. And it gives me some needed nutrition. It comes with an immunity boost, too. I love it!
Other lowlights include a two-month hiatus from taking a walk outside. I finally did my 2 mile loop. I was about ten minutes from home when I realized how hard it was and how much energy I was exerting. I need to build up my stamina. I’ve only done it once or twice since then.
A friend has visited me twice where our visits basically amounted to me lying on the couch like a lazy bulldog while she sat in a chair. I couldn’t even sit up.
Most days my makeup consists of eyebrows and eyeliner on days I want to spruce up. Makeup has always been rather minimal for me. Eyebrows make a huge difference. Lipstick isn’t needed because if I go anywhere, I wear a mask.
These scenarios are examples of my not living well with cancer.
At home I’m largely okay. It’s my safe haven. I can eat and rest when I need. Recently, I traveled to Florida. My plane ride was remarkably normal. Once I met up with friends, I found keeping up with them hard. I couldn’t always eat when I needed to but gradually began to do this to fit my body rather than the late hour. I had to say NO once or twice to activities. I still took my afternoon siestas when possible. The emotional toll of the trip and side effects were almost harder than the physical.
What to do now that I’m home?
I rest when I need to rest.
I nap without apology.
I eat what I can and what tastes good to me.
I cancel plans if too tired.
I know who supports me.
Now, I’m on yet another treatment. I hope it’s kinder to my body and more effective. I’d love to get back to living well.
Finding A Way 
The slide into not living well is often insidiously and seductively slow and without fanfare. Here’s hoping new meds for us both gives us days of thriving and not just surviving. ❤️
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It’s painfully obvious when your life is set next to another. Yes, we both need better days ahead and we’ll have them.
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I think you are truly remarkable. It’s amazing how much you still manage to do despite how awful the treatments are. But what really impresses me is your ability to invest in exactly the kind of self-care you know you need at the time. You do it! You listen to your body and you consciously care for yourself.
Thank you for everything you share here on your blog, Kristie. You are an inspiration.
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Hopefully, today will be a day I get lots done. The self-care is key and often the only thing relly with my control. I don’t need today to be inspirational – I need to be easy.
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True, easy not inspirational ❤️
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Living unwell sucks. I’m so sorry you have had that experience on Enhertu. 🤞🏻🤞🏻 this new line is better.
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I never really even saw it coming until it was already there. Yes, new treatment lines that are easy and effective for us both, please. It isn’t too much to ask.
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Hugs, Kristie. ❣️
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Thank you. Many hugs back to you.
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I’m in the midst of looking great, but not really being great. Progression sucks. You are the fourth person this week who has talked about this. I pray that you live well again soon. I pray the others will be finding their way to living well.
And I pray that my new whatever is ahead works.
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Yes, praying whatever is ahead for us works. I don’t even look great.
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I can’t imagine what it must be like for you, Kristie. Big hugs and I truly hope that the new med isn’t as harsh on your system.
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Thank you, Terry. I’m hoping the new drug not only works but puts a spring back in my step.
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Hi Kristie,
Hoping the next line of treatment is kinder to you, too, and allows you to feel like you are living well again. Keep writing. x
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Hi there Nancy. So far, so good. The treatment is tolerable. Now, bring on the efficacy!
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Oh Kristie, I had no idea you were going through this! I saw you in Florida and thought you must be doing well! How is this new treatment going? Better I hope! Please reach out with anything you need or if you just want to talk. I’m always here. Love you!
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Thanks, Marilyn. The newest treatment is okay. Nothing is perfect. Florida was off and on. Sometimes I felt okay and sometimes I did not. Thanks for caring. You are a good friend.
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I lost your comment from today and can’t seem to find it. Thank you for your support. ❤️
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