Experienced w/ Cancer and Mental heal... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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Experienced w/ Cancer and Mental health need apply

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Took Ibrance for 6months, didn't sleep for about 6 months tired all the time..I stopped ibrance for targeted radiation and no I have not yet started Ibrance back up 2 months off. I feel like I am dying, sleep 24/7. It's damn mess. My tumor markers help steady and now they are even going up. ...now at 75 from 68 in one month. ...the ibrance seem to have the most awful side effects but now I'm forgetting them when I'm not having ibrance I have worse side effects

Can we had a do over button? I'm my 5 year ticker started at diagnosis or now or is it now? I clearly am a mess with making so many so decisions , I also have three children two of which are still in junior high and high school at home, well not at my home ,my parents home because I learn longer can take care of myself . My 6 months long do divorce hearing finally came to an end on the day I was a diagnosed with stage 4 cancer, leaving us with nothing, except the state of Colorado standard rate of $845. But clearly I would have help? Not until a year later and they finally gave me a SSDI , you know that shit you have told your will get at 65. Well it's not that much at 47...and because my ex was able to manipulate and only use this VA benefits in out divorce and didn't need outside insurance, I had been thankfully approved for Medicaid from the state of Colorado. 1 year into that however they told me that I will be moving over to Medicare. None of my meds are covered so the said o need part D, I have part D now the part D says that they won't cover but one. Ok so the send my a letter on each of these medications and tell my courtesy fillis only going to be valid for 30 days after that I'm on my own. So today after being the bed literally for 10 days without moving much and a huge huge shout out for my mother,who has taken care of my girls who have been sick home from school for the past 3 days with the flu. Is this normal? I haven't had any days like this ..or have been able to remember what day it is as I thought is was Friday then remembered it was Thursday, but uh it's really really WEDNESDAY! Am I already dead? Is there a website I can check to see if I'm really gone or is this HELL! Oh hell, maybe I am in a comma some where...wake up please wake up! This isn't heaven....not what I thought is was....and of this is hell, am sure bad shit will happen...ok so coma....any words from anybody that could help me realize that this s*** is not that easy, it's never been easy and it's not going to get any easier and just WAKE THE FUCK UP!!!! Any single or divorced women that have been left to be cared for by already old parents? Anybody struggling with teenage girls and all the girls want is a really good deodorant, not something gritty? Anybody tired of not knowing what to do? Please speak out and if this is offended anybody I'm so sorry.

Tina

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Mental Health should have been a topic!

PJBinMI profile image
PJBinMI in reply to

As I read about the first half of your note, I suddenly thought "this sounds like Hell! " Really super duper sh&%$y awful situation for you and your whole household! It does sound as though you do have a good mother, probably even a spectacular mother. I am sorry that this is all so overwhelming for you! As I read your note, I found it overwhelming, so know that most anybody with all that going on would be overwhelmed! It doesn't make you crazy! For alot of us, especially women/mothers, asking for help for ourselves is not easy and does not feel natural. But with this blasted cancer, there are times that we really need to, and this is one of them for you! Hard as it may be, you absolutely cannot do this alone nor even alone and with your mother's help.

IF you haven't told your onc just how lousy you are feeling, you need to do that, today, and not wait until the weekend or Monday. If you have told your onc, tell 'em again--call and speak with a nurse and tell them that you feel at the end of your rope, or whatever metaphor or words seem best to fit how you are doing and how overwhelmed and desperate you are!

If you have not seen a bc specialist onc, this might be a good time to do that. There is a great cancer center in Denver that would be able to set up a second opinion appt for you with a bc specialist --your own onc should be able to help that happen.

My gynecologist was the doctor that sat me down and had a heart to heart with me about just how rough cancer and cancer treatment are on our brain chemistry! Anxiety, depression, sleep deprivation -- all can be part of this living with cancer package. And there are good meds that can help those, but sometimes we have to push our docs for them to realize how much we are suffering mentally, spiritually, psychically, emotionally.

Many of us need meds to help us cope, maybe most or close to all of us. I've needed to use meds for depression, sleep and anxiety at one time or another in the years I've had bc. Sometimes it can take a few tries to find the best meds for how we are feeling, but there are good drugs out there!

There may be somebody at your onc's office who specializes in finding resources for us, local sources of financial assistance, help paying for meds, home health care, whatever we need.

About non-gritty deodorant--I use Dove deodorant and it doesn't feel gritty to me. My husband likes gel deodorants and I would think they are not gritty. When I was younger and my pits were wetter, I really liked Ban roll on. The things our daughters need to learn..... I haven't thought about that in a long time! And having teens in the house can be challenging even without cancer! 12-13 year old girls are notorious for not getting along well with their moms. That does eventually pass, but sure can be hell to live through. And of course having cancer adds layers to that!

If you flat out don't have the energy to call your onc's office, I bet your mother would do that for you! I'd sure do it for any of our grown daughters!

Keep us posted about how you are doing! And know that we are here and we care!

nstonerocks profile image
nstonerocks

You are not crazy. You are scared, sick and exhausted. PJ gave you great advice that I won’t repeat. You need help and someone to talk to. As far as getting Ibrance and other drugs you need, your onc, hospital social worker and or the American Cancer Society are resources to start with. Why don’t you call the SHARE hotline and talk to someone. I’ve called them when I felt I was going over the edge and it helped to speak to another woman in my situation. Both SHARE and Living Beyond Breast Cancer can help you find a support group. Do not stay isolated. Antidepressants and anxiolytics help a lot. I’m on them. I Take a daily antidepressant and Xanax only when my anxiety is hurling out of control. Thank God for your mother! What a blessing. I agree with PJ that you should tell your onc just how low you feel. If they don’t get involved can you switch docs? I thank God my oncologist is so caring beyond the clinical picture. I was so depressed and panicked when I was diagnosed I thought of ending it all. And I don’t have younger children or the financial problems you do. No one can go thru this without help. I still have “bad” days and days I would like to hit the reset button and just run from all of this. Please stay in touch and let me know how you’re doing. How about make 2 calls today, one to your doctor and one to a helpline. Let me know how it goes.

hopefultn profile image
hopefultn in reply to nstonerocks

call Pfizer . they will assign someone to help

Epinto profile image
Epinto

Good advise from the ladies! Gather all your strength and fight for yourself and your girls. Call your doctor and get an appt ASAP!!! I also just found out my insurance will not be covering my ibrance after March! It’s a shock to the system, but there are grants through the prescription company Pfizer. They help with assistance. Get up and make the calls, get some medication for your depression and perhaps join a support group like this one. U r not alone, even though it feels like it sometimes!!! Your family wants u around, now decide that u want to be around.

RLN-overcomer profile image
RLN-overcomer

Sister my heart aches for you. God knows you have been through some battles, but I do

believe that every battle that doesn't kill you, will only make you stronger .WARRIORRRRRRR

Keep on fighting. When you think you have nothing else to give ask God to renew your

strength. Almost 10 years ago when I was having aggressive ,and very challenging

chemotherapy treatments, there were times when I was preparing to tell my loved ones, I

wasn't going to another treatment. Before the words ever left my lips, I saw my mom, my

dad, and my husbands eyes staring at me, and one of them would say are you ready, just

before we left for my next treatment. When I wanted to quit going to chemo, God used my

loved ones to give me the strength to make each subsequent appointment. When I finished

my last chemo , I was like party of here ,party over there , party everywhere. My spirit was

willing, but my body needed time to be pain free. Our creator, Lord God, your mom and this

community of Sister Warriors, we all stand in the gap with you. i pray you will find a

compassionate Social Worker/Patient Advocate that can help you navigate this challenging

part of your journey. I also hope (pray) that your wonderful mom can find a caregivers

support group that can help her as she tries to be strong for you, and her grand-daughters

who are also teenagers. YESSSSSSSSSSS Lord did you hear that two teen aged grand -

daughters. Please send a double portion of blessings, and as many angels as you can spare

their way. XoXoXoXoXo

Partia profile image
Partia

I wish I could help you. All the best. This disease is horrific and you are dealing with too much.hugs

NPmary profile image
NPmary

Dear Tina alias Hidden, your life sucks, l wish l could make it all better. How you feel inside your body is important ♥️ Tell your doc that inside your body you feel like your dying, you might not need hospice now but you sure do need some expert palliative care, let your doc know you still want him to treat you but you need a palliative care doc/team. The system is screwing you over money - talk to your social worker and see if he/she can get you help, you can try calling the drug companies and see if they will help. See if the social worker will make calls for you or at least be with you when you do make calls.

I am so very sorry that you are going thru any of this let alone so much of this !!!

Love and prayers, my friend, Mary.

NCDS profile image
NCDS

make the most of every day! I’m a single mom of daughter with significant special needs. Did the first cancer round 9 years ago, surgery chemo etc. financial ruin, health compromised but still kicking. Now MBC 4 Mets to bones, lymph, lung. Four months in, starting second type of treatment! Hang tough, prayers and hugs. You are not alone.

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