chemotherapy-induced peripheral neuropathy

In April of this year I was diagnosed with stage 4 bile duct liver #Cancer . I’ve been in #Chemotherapy since May. I recently found out I’ll be in chemo for the rest of my life or until it either stops working or becomes too toxic for my body to handle.

I hate chemo, I thought I only had a few treatments left in this “round” but turns out there is no round. My arms are so marked up and bruised from the IVs since I’m a hard stick. I had a faulty painful port put in and taken out, the complication was so severe that I might not be able to have a replacement put in. I’ve lost 53lbs and most of my hair. I’ve developed #ChemotherapyinducedPeripheralNeuropathy . It makes me so sick, so weak, so tired. I’ve had to have platelet and plasma transfusions because of chemo.

The chemo has helped shrink my main tumor from grapefruit size to a lime so far and helped with the spreading so I put up with it and I’m grateful for it even though I hate it.

Nobody tells you that cancer physically hurts. It’s does, a lot. And the smaller that damned tumor gets the more it hurts. Mine vibrates, it’s such a weird sensation. My oncologist and I joke that it’s the wicked witch melting as the chemo shrinks her. Of course I have a dramatic tumor. I have to pick and choose when I take pain killers for it because of my heart disease and fragile heart. So unless the pain is around a 9, I just try to deal with it. It’s been a 7-8 24/7 here lately.

Nobody tells you that cancer doesn’t take away your hunger but it does take away your ability to eat. So you’re just hangry and unable to eat all the time, makes me such a pleasant person to be around I’m sure. The moment I try to eat I’m instantly nauseous and feel full whilst my stomach growls. And everything tastes like crap courtesy of chemo.

Nobody tells you that cancer robs your ability to take care of yourself. It takes your energy, your balance, your strength, your concentration. It leaves you weak and exhausted and ravaged by pain and treatment side effects. I now rely 100% on my mother to care for me as if I were a child, I’m 40. If I try to walk around Walmart for more than 15 min, I pass out. So my elderly mother has to do everything.

They don’t tell you how lonely cancer makes you, how your immune system is so fragile that you’re basically on lockdown. Especially in 2021! I can’t trust others to socially distance or mask all the time or be totally vaccinated and not interact with others who may be sick so I can’t see anyone outside my household which is just my mother and our pets.

When you get told you have stage 4 cancer you’re given a lot of hope, however false (or not) it may be. You’re not told at 40 how to plan for the “just in case but probably the case” or what the legalities are.

Cancer sucks but y’all are great for letting me vent, thank you!

#BileDuctCancer

TW: #ChronicPain #Anxiety #SuicidalIdeation #Vent

I’ve lived with chronic pain all my life. Diagnosed with #ChronicMigraines at 6, #TemporomandibularJointDisorders at 14, #PsoriaticArthritis in all joints at 28, #Fibromyalgia at 29, #PolycysticOvarySyndrome at 30, #Cancer at 39, #ChemotherapyinducedPeripheralNeuropathy at 40. And countless other diagnosis along the way like #Asthma , #Diabetes , #sjogrens , #PosturalOrthostaticTachycardiaSyndrome , #Cardiomyopathy , #CongestiveHeartFailure , #Anemia . All while dealing with #CPTSD , #MajorDepression , #ObsessiveCompulsiveDisorder , #DomesticAbuse , #ChildhoodSexualAbuse , #MedicalTrauma .

I’ve been in and out of hospital for both the cancer and my heart lately. The bile duct liver cancer is responding to chemo however due to a port that needs replacement and having been in hospital, I’ve not had chemo in a month. So it’ll be starting back up soon. I’m mixed about it, on the one hand what was meant to be palliative had turned out to be curative so that’s amazing. On the other hand the sickness and pain of chemo this time will suck because no meds!

No meds? Yes, no pain meds or pain management anything aside from “a” Tylenol if I really need it, not the prescription kind. Earlier this month while in hospital for my heart they decided 90% of the meds I was on were “heart toxic”, including my mental health meds and pain meds. So they had me cold turkey all of those and I can’t go back on them because they’re trying to give my heart a chance to improve and heal with the help of heart meds and off the meds that were bad for my heart. As well as lifestyle changes. My ejection fraction is 20-25% since April. They think it stemmed from a virus or infection and usually that heals within 6 months but the meds + weakness from chemo (my chemo meds don’t affect the heart itself) were not allowing it to heal. So now no pain meds, no pain preventing meds. No mental health meds aside from a Xanex to use in emergencies but can’t be mixed with or taken near my heart meds. Which means I can’t ever use it because I take heart meds 3x day.

Now I’m having pain flares of everything at once because no chemo for a while means my immune system is awake again and overreacting to literally all the things. I know pain, I’ve lived all my life with it and I have a high threshold for it. But I’ve never had to live with it in all its fury and all at once without help for any of it. The full pain with my untreated anxiety has led to almost nightly severe panic attacks at night because the severity of the pain keeps me from being able to sleep. I’m also freaking out at the thought of having to do chemo with no side effect help.

The intense pain/anxiety combo is throwing me deep in depression again and bringing back all the thoughts of ending things. It’s just so much to deal with at once, losing hope so quickly.

Thank you for letting me vent & for any support!

So last night was a 9 pain night. Had the portagram (no numbing cream) found out I need a new one so one surgeon will remove his eff up and another will put a new on in during a separate surgery (long dramatic story for another time) and was having a bad neuropathy day. So instead of 2 scars I will have 6.

Today I went to see oncologist and get chemo, can’t chemo because white blood cells too low so Neupogen shot instead and another tomorrow. Oh joy!

I also find out the pain I’ve had is definitely a bad case of chemotherapy induced peripheral neuropathy. She gives me Gabapentin and I happily accept. I didn’t want to add more pills but at this point I’d they’re taking my pain management seriously, then yes pls! Long med list? Idgaf.

Also find out I have a cataract in my left eye and that’s why I can’t really see much lately, it’s caused by the steroids given during chemo. It requires surgery which I can’t afford.

I also find out the horrible headaches I’ve been having are from the placement in my neck of the port catheter. Cool. Really freaking cool.

So now I’m just in so much physical pain and so fed up with this cancer treatment process that I’m so completely overwhelmed and numb that I have nothing left to feel anything with. I just want to cry but I won’t because my damn eye hurts 😂 .

#Chemotherapy #ChemotherapyinducedPeripheralNeuropathy #Cancer #CPTSD

I’m wondering what others use to relieve neuropathy pain and fatigue in the legs, feet, arms and hands? Like topical creams or other non medication things that help?

I started out with a little neuropathy years ago with my fibromyalgia and then it got a little worse once I developed diabetes. However, currently with chemo for cancer, I’m having the worst neuropathy ever! It keeps me up at night and keeps me from doing much. I try my morphine but it doesn’t help a lot and because I’m on so much medication right now I don’t want to add more pills. Thanks in advance for any advice!

#PeripheralNeuropathy #DiabeticNeuropathy #Fibromyalgia #Neuropathy #ChemotherapyinducedPeripheralNeuropathy #Pain #Fatigue #tightness #hometreatments