chemotherapy-induced peripheral neuropathy

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chemotherapy-induced peripheral neuropathy
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Community Voices

I hate this cancer & everything it’s done!

<p>I hate this <a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce6a00553f33fe98f050" data-name="cancer" title="cancer" target="_blank">cancer</a> & everything it’s done!</p>
2 people are talking about this
Community Voices

Feeling trapped by pain, no relief options.

<p>Feeling trapped by pain, no relief options.</p>
6 people are talking about this
Community Voices

When is it ok to give up?

TW: depression, trauma, terminal illness *super long vent, sorry*

I feel like this #Cancer is taking everything away from me, what little I had left. Prior to diagnosis in April, I had to quit my job for health reasons and filed for disability (medically approved now but for the cancer but still no final word from them). I was struggling with #CPTSD , #MajorDepressiveDisorder , #ObsessiveCompulsiveDisorder , #Fibromyalgia , #PsoriaticArthritis , #Asthma , #sjogrens , #SevereAllergies , #Bursitis , #PolycysticOvarySyndrome , #DiabetesType2 and a bunch of other complications from all of these things plus a few more diagnosed illnesses. All whilst trying to get a divorce (still trying to get it).

So in April I go to the ER thinking Covid. Nope. Lungs both full of fluid from #CongestiveHeartFailure . Apparently I had a heart attack and didn’t notice as I was told a lot of chronic pain patients don’t because we’re used to random severe pain. Also they found a grapefruit sized tumor on my liver, stage 4 #BileDuctCancer in my #liver and it had spread to some lymph nodes on my abdomen. I have no medical insurance.

So now here we are in July and I’ve been in chemo since May. I’ve had a few minor surgeries/procedures and I have to have my port removed/replaced which is why I’ve been in pain there since May.

Now it turns out on top of mouth problems, fatigue, low white blood cells as side effect to my #Chemotherapy , I have been diagnosed with #ChemotherapyinducedPeripheralNeuropathy which has been the most painful experience of my life. They said it was a severe case.

They also think either a #cateract or #Glaucoma in my left eye which is why my eye hurts and I can barely see. Either could leave me blind. I’m an artist by trade, I’ve won awards for my cakes and every one of my hobbies is art/craft/visual. Now I can’t tolerate any amount of light without it being painful and I can’t do anything with my hands without being in major pain from the neuropathy. I can’t enjoy anything or do anything for myself, already fell down the stairs last week because of my vision/neuropathy combo.

Also, I’ve had to get 2 Neupogen (helps bone marrow make white blood cells) shots this weekend and like every other week. The bone pain makes my body shake uncontrollably and nothing will help it.

All this has led to me being a walking pharmaceutical cocktail and the side effects are brutal. I picked up a new med today, tonight my little medicine bag overflowed and I broke down. I just turned 40 in May. I have more meds than years on this earth. I have a terminal illness that makes me ineligible for the heart transplant that I need but im technically not dying according to my oncologist.

So at what point is it ok to say I’ve done enough, I’m tired and I give up, I want out? Daily living is torture and there’s no joy.

Thank you if you made it this far!

18 people are talking about this
Community Voices

I give up, pill me doc!

<p>I give up, pill me doc!</p>
3 people are talking about this
Community Voices

Non pill neuropathy relief? What works for you?

<p>Non pill neuropathy relief? What works for you?</p>
12 people are talking about this
Community Voices

Has anyone had a relationship end over illness/cancer?

Hi, I was diagnosed with stage 2 colon cancer in early May. That lead to daily doctor appointments and three weeks later I had the tumor and part of my colon removed. I am now undergoing chemo with cumulative effects. I am getting through it. I was, also laid off after 21 years as my division got outsourced. I am unable to work while undergoing chemo. Two months after my surgery my girlfriend of 4 years left me over cancer. I have since met another person who views what I am going through as a chapter in our relationship. My question is has others had relationships end over cancer/illness and how did you deal with it? I still miss my previous girlfriend and go through bouts of depression. My new romantic interest is getting me through it as it is amazing someone wants to hang out with an unemployed cancer kid. #Cancer #Depression #Chemotherapy #ChemotherapyinducedPeripheralNeuropathy

6 people are talking about this
Cindi Olsen

Receiving a Chemotherapy-Induced Peripheral Neuropathy Diagnosis

Yesterday, I spent an hour in the Atlantic Ocean, on Crane Beach, Barbados. My husband and I are on vacation, enjoying the raw power of the ocean waves as they pound against the cliffs, and the feel of the sand slipping away beneath our feet with the rhythmic surf. It’s a gorgeous, slightly dangerous place; the tides lurking beneath the surface of the water are just strong enough to trap swimmers and pull them out to sea. One has to learn to pay attention while playing. While I absolutely love Crane Beach — hands down, it’s my favorite vacation paradise — it also leaves me mildly terrified when I enter its waters. While I stood in the surf up to my waist, hanging onto my hubby’s strong frame for support, it struck me how this beach mirrors my struggle with a breast cancer diagnosis and the ensuing fallout over the last few years. Nearly five years ago, I found a lump that would change the course of our lives. The calm we took for granted was upended by the turbulent forces of cancer treatment — surgery, chemotherapy, radiation. I endured the storm stoically, believing that once through the medical regimens I would be cured and the waters of my life would once again still. This storm, while terrifying, was temporary and would blow over. In a sense, my faith was correct: treatment created remission, and I am almost at that magic five-year milestone (hence the vacation celebration at my favorite playground). Yet the currents of my life have continued to swirl, at times overwhelming me. My recovery hasn’t brought me to a place of serene, still waters. Instead, I find myself navigating the sea of total disability in the form of chemotherapy-induced peripheral neuropathy (CIPN). My attempts to navigate the currents of chronic pain, and heavy medication loads — with all their awful side effects — finally culminated in the declaration that my condition was permanent. At this point in my recovery, the medical community describe my CIPN as “incurable and difficult to manage.” I was forced to leave behind my career and focus full-time on learning how to live within my body’s stormy condition. The resort staff at Crane Beach have designed a flag system to alert swimmers to the danger levels of the ocean currents: a yellow flag means that the waters are less turbulent and safer for swimming. A red flag is a warning to enter at one’s own risk, and to exercise abundant caution while bobbing up and down in the thrill of the pounding surf. Similarly, I’ve learned to take stock of my body’s nervous system. Each morning, before I rise, I do a body scan to note where the pain is, and its intensity. Sometimes I awake to a yellow flag day; often, it’s a red flag day of rising symptoms. If I ignore these cues, it can quickly become a riptide that completely drags me out to a sea of relentlessly pounding waves of pain. I can flounder there for days on end if I don’t respect my body’s needs. Recovery from cancer treatment is my own personal Crane Beach: the mere fact of survival is breathtaking in its beauty and something to be cherished and celebrated. But the ocean of my life will never be the serene, still waters for which I long. Instead, I will contend with the restless, hungry current of CIPN for the remainder of my days. As I navigate the waters of my existence, I must approach each day with an eye toward reading the horizon, watching for approaching storms, alert to the rise and fall of pain. It’s not the recovery I imagined for myself or my family. Yet despite the challenges each day brings, I have discovered there are gifts brought in by the tide. My personal beach has revealed the blessings of deep relationships in the form of a few “old souls” who are not afraid to weather this storm alongside me. I am not huddled against the raging ocean by myself; nor am I without tools to equip me in my efforts to tame the tides of pain, such as the discovery of high CBD oil. As I go along, I have encountered fellow sojourners much more expert at reading the ocean of pain and managing its currents: the yogi, for example, who has begun to show me that connecting breath with alignment in my body holds the key to stilling the waters. He is accompanied by a massage therapist whose magic brings relief to my beleaguered body. Under the watchful eye of a physiotherapist, this team of experts have created an oasis of calm which enables me to fly a yellow flag on my beach more regularly. As I stand with my husband in this ocean, I have hope. Even on the days when the tides rise, and the waves pound in painful turmoil, I am learning I can simply breathe deeply and continue to look toward the horizon. There is beauty on my beach, and I will enjoy it as I face each challenging current. We want to hear your story. Become a Mighty contributor here . Thinkstock photo by boymonster