How long did it take you to recover after treatment?

Posted by gemjaynes @gemjaynes, Sep 23 1:44pm

As of Jan 1, 2024, I had completed treatment, but I still had brain fog, fatigue, etc., for months. I had shrunk down to 112 pounds, the top of the anorexic scale for my height, but I had no appetite. I had to force myself to eat enough. It took me 5 months to put on 5 pounds. Healing your body from the inside out takes lots of extra calories. 6 months post-treatment, I finally had the energy to start back up at the VL Senior Center, to do load bearing exercises to counteract the beginnings of osteopenia in my left femur. Building muscle and growing hair takes even more calories and protein. I'm 64, so I suspect I'm recovering more slowly than many. I still feel like I'm missing a critical number of brain cells.

Many chemo survivors complain about their symptoms hanging on for a year or longer. Friends and family think you're 100% good to go when treatment ends. Wrong. For me, it has been like slowly crawling out of a deep crater. EVERYTHING takes effort.

On the bright side, my hair has come back, but now it's various shades of grey and full of chemo curls. It's growing up, as well as out, and it looks like a cumulonimbus cloud sitting on my head. For Halloween, I'm making tiny yellow clay thunderbolts to affix to my hair. I'm going as a thunderstorm.

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Denise | @denisestlouie | Sep 23 2:54pm

You have a great since of humor!

If I were you I would consult a dietitian, or a functional/holistic Doctor. These type of professionals can help you with nutritional issues that may help you pull out of you current state.

I work with a holistic Doctor. He works in conjunction with my oncology team

gently | @gently | Sep 23 4:05pm

@gemjaynes,
please post the haloween photo on your profile page.

katgob | @katgob | Sep 23 8:12pm

I ate graham crackers and meat for months. Also, sourdough bread plain. Nothing tasted good for a while. Since you weight so little, I say reach out for support. All my muscle was gone by the 4- month end of my chemo.
I ended up with MDS less than 2 years later. Hair loss again and muscle loss. This time i have been out walking every day over 10, 00 steps a day.
I agree people think we are fine once we can do anything like normal. I cannot count the times people would tell me on zoom how great or looked or on the phone how i sounded. I was told it would take a while. I ended up with a blood clot after my surgery.
Seek out resources. Getting back to the Senior Center is great news. You are on the right path. Taking care of yourself as each day unfolds.

engelwags | @engelwags | Sep 24 8:24am

That is the BEST Halloween costume ever! Your sense of humor is going to go a long way toward getting you through all of this. Way to go!

seathink | @seathink | Sep 24 11:48am

Nice! I also want to see pictures 😊During chemo I went as Jean Luc Picard for Halloween, it was pretty epic, and I had a lot of fun.

As to the recovery, active treatment and then treatment for side effects took 2 years, and now 2 years later (except for permanent side effects) I feel back to myself. People definitely moved on, which was frustrating.

sally484 | @sally484 | Sep 25 8:24am

I finished up my treatment in 2021, but am still on an AI. I dropped from 120lbs. to 102 lbs. The only thing I liked was Little Caesar's cheesy bread! I am now gaining weight on the AI and weigh 137 lbs. (which I don't like!) I still don't feel quite myself. I'm tired .......ALOT.......and have no taste or smell anymore. Hopefully, it will return.

gemjaynes | @gemjaynes | Sep 27 6:35pm

In reply to @seathink "Nice! I also want to see pictures 😊During chemo I went as Jean Luc Picard for..." + (show)

Brilliant! You've got to grab whatever laughs you can on this odyssey. Well done!

sue417 | @sue417 | Sep 28 10:26am

Hi
I finished treatment april second this year and I too am sixty six and it's been a slow crawl to get back to normal. I did not have chemo but I did have radiation. You just wonder if you will ever get your energy back. I lost twenty one pounds thru this process. Now it starts all over again.I get my mammogram next week and keep my fingers crossed things are going to be okay. I have to wait three weeks to get my results

gemjaynes | @gemjaynes | Sep 28 2:29pm

I had to tamp down anxiety before my mammogram -- one year after the cancer diagnosis that started me on this odyssey. I'm still theoretically cancer-free. It sounds like our experiences are quite similar.