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Post-cancer neuropathy

Post-cancer neuropathy

Posted by eak64 on Jun 5, 2020 8:33 pm

I am recovering from rectal cancer. I was diagnosed in March of 2019. I had radiation treatments for 6 weeks. I had surgery back in September of 2019. I started chemotherapy treatments in November of 2019 and finished treatments in March of 2020. It has been 12 weeks since I finished chemotherapy treatment. I have been dealing with excessive neuropathy pain in my hands and feet. I have tried several antidepressant medications to try and relieve the pain, but none of those have worked. The pain is severe. I am wondering if anyone can offer some suggestions who may have experienced the same issues with neuropathy. I am wondering if the pain is ever going to subside. 

Re: Post-cancer neuropathy

Posted by lochatter on Jun 9, 2020 6:16 am

eak64‍ Welcome to the nerve damage club! I had to stop treatment twice and had anxiety attacks surrounding my neuropathy. At the time my doctors said it would likely improve slowly as I got further and further away from treatment but they also added the classic line - everyone is different. 
The best thing to come out of my neuropathy was seeking out a therapist that could not stop the physical pain, numbness and tingling in my hands, feet and legs but helped my mind. This was huge game changer in my journey. At my worst, I could only focus on each and everyone of my nerves and my mind always went to the worse case scenario. I started a little motto that would bring my life back into perspective - I’m okay. With a deep breath.
I can not tell you how many times I would sit in my car or on my sofa and repeat my mantra over and over until I calmed my other nerves.
I’m posting today to tell you that you will be okay.  
My treatments officially ended 2.5 years ago and I’m 100% better.  Just kidding (I use humour because laughing is the best medicine). I don’t think my neuropathy will ever go away but the pain, numbness and shoot pains have faded into the background. It has become my new normal and I’m okay with it. My blood cancer did not leave me with many physical scars but it challenged my mental health and nervous system and has made me a better person.

My tips:
- wrapping hands in a blanket while watching tv
- soaking feet and hands in warm water with Epson salts
-Chaco sandals
-diabetic socks without seams
-as a sock hater, I did appreciate slippers. Tingling and numbness worse when feet and hands are cold
-making ‘I can’t feel my feet’ jokes all winter long
-focusing on the positives 
-keeping mind off the nerves (when I think about it I can feel every single nerve ending or at least I believe I can feel the damage)
-12 week’s is early. Nerves can take years to heal. But don’t be discouraged. Don’t wait to live life until they heal, get out there and enjoy every minute.
-chocolate 

Congrats on your success!  You already won by living!

 

Re: Post-cancer neuropathy

Posted by Essjay on Jun 9, 2020 5:26 pm

eak64‍ and lochatter‍ this neuropathy lark is a pain eh?
I have mild neuropathy from Paclitaxel for breast cancer, and I'm a year out of treatment. I have seen some improvement to the numbness and tingling, and I'm in pain less often.
As lochatter‍ says mindfulness is a really good way to deal with the pain and the feelings - acknowledging but not dwelling on the feelings. And I totally agree that you need to keep those extremities warm.
I live in Manitoba, and winter is long - it felt like we had three winters this year, so I work hard to keep my hands and feet warm. This is a challenge for me as I'm an outdoor person walking the dog, snowshoe hiking and winter camping while there's snow on the ground, and I've had to learn my new limits. If its too cold, I'm next to useless at putting up or taking down the tent.
At home, if I sit in front of the TV I make sure my feet are warm because if they become cold then that's when the pain starts, and it can affect my sleep. I use a hot water bottle if necessary.
I'm a runner - started after I finished treatment last year. Sometimes when I run, it feels like I have stones in my shoe - I actually have run with stones I cant feel, wrinkles in my socks etc but I've learned to ignore that feeling and think about crushing those stones with my steps. I run like a drunken gazelle at the best of times, but I'm glad its quiet! I do actually believe running has helped. I've also been doing yoga - gets interesting when I put my hands above my head and they are instantly tingling and numb, and balancing on one leg has been a laugh, but I am actually improving. In the gym (ah - remember the precovid days) I would use a balance board to work my feet too.
I've found an old clunky keyboard for my computer - really helps because I can hear every key stroke. Helps when you cant feel the keys!

I sometimes feel I wasn't prepared for this new normality when I was being prepped for treatment. I know I had little choice if I want a long healthy life but I feel this side of recovery was rather glossed over...

Hope you can find a way to cope - please know you are not alone xx
Triple Negative Breast Cancer survivor since July 2018

Re: Post-cancer neuropathy

Posted by Cynthia Mac on Jun 10, 2020 8:19 am

Super post, lochatter‍ , chock-full of helpful tips.

I’m a fan of Louise Hay, so my “mantra” when I’m under huge amounts of stress is, “I am safe.” Accompanied by a deep breath or 5 (😉) it can really ground me.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying