STEAM ROOM FOR ANGER

sweetp6217

Artista928, Yes, they do know that I went through chemo (which began July of 2017 to July of 2018). They probably believe that I have recovered in all ways. Thanks for the good wishes.

Meow13

really hate rude doctors. I had to go to urgent care for an infection God I hate those places.

Artista928

sweetp, time to educate them? Maybe your mo could write something? Some don't recover fully. I didn't and I'm 3 1/2 years out from last chemo. Did rads then tamoxifen and am usually too fatigued to do much of anything, and cognition isn't the same. You have to put yourself first.

sweetp6217

Bless you Artista, My MO told me that her "door was always open"..."just call me, etc.". Haven't heard from her for 4 days. I left messages yesterday and today. (Sigh)

bella2013

Sweetp, are you on any antidepressants? If so, who monitors your medication? I have been on antidepressants for years. When BC came along my psychiatrist worked closely with me. About seven months after BMX with DIEP Reconstruction I was healing well but the fatigue and brain fog kept me on the sofa most of each day. He prescribed Modifinal and it’s a game changer. The brain fog lifted and the debilitating fatigue resolved and I could join the human race again. My psychiatrist said he often sees patients with chronic long term medical issues (MS, Parkinson’s, Cancer, etc.) benefit from Modifinal.

I doubt that you will find that your MO, PCP will prescribe it for you or if they do if insurance will cover it. If you can get to a psychiatrist you may receive help more quickly. I would get to the psychiatrist and let him/her decide what tests are needed and you might have them done within the same practice

Praying you get the help you need quickly.

Hugs,

Bella2013

sweetp6217

Dear bella2013, it's a hurry-up and wait situation. My PCP prescribed effexor several weeks ago, but I haven't been able to start taking it because she wants me to try it when I have at least 2 days off. Lucky me, I only have one other FT co-worker and the two of use are juggling the shifts so the first time that I can try it is this holiday weekend. Since my boss didn't bring this up earlier this year, I'm scrambling to get ahold of my MO. It really shocked and hurt me that she didn't respond to me yet. Post-chemotherapy cognitive impairment shouldn't be some secret. I haven't been able to find out about this until about last week. It's been fairly known since 10 years ago or thereabouts. (Thinking) How come no one brought this up before????? It is really sad that so many health professionals "forgot" about this. It supposedly effects about 30% of breast cancer chemo patients, and can last for years.

Because of where I work and our staff is lower than it should be, I get the short end of the stick! I want at least one day off during the week but they give preferential scheduling to the part timers, which IMO is wrong! Not venting at you, my dear. It's the way it is. Right now, my fellow FT texted me "can you come in early today?" I just want to scream.

jaycee49

sweetp, it might be time for you to learn how to say NO. If they are so tight on staffing, what are they gonna do? Fire you?? Tell them you NEED two days off in a row to try Effexor. (Don't mention Effexor. It is an antidepressant and no telling where that might lead their little minds.) Tell your co-worker you can't come in early. NO NO NO.

Do I seem unnaturally annoyed, even for me? Well, yes I am. I called MO this morning to get Pet scan results (very brave of me) that I had last week and was on hold for 15 minutes. The whole time, you wonder if you should hang up but don't want to waste the time you already put in. I finally get a person who tells me my MO is on vacation until next Tues. Whatever. She gets to take vacation. They could leave a message for the on call MO who just happens to be my former MO who I FIRED. No, thank you. Plus, he doesn't give results over the phone. You need a DOCTOR to explain results, right? Even though my stage IV dx came on the PORTAL. I wish I hadn't called. I usually don't. And this is why. Just more aggravation. Is it getting harder to get medical people on the phone lately? And to get them to do anything reasonable? I'm finding that to be the case.

runor

Medical machine seems to forget it's a SERVICE industry. They need to take some lessons from a good waitress who runs her ass off, juggles hot plates, keeps an eye on your coffee, asks if everything is alright and do you need anything else and does it all with a smile. I think your business is only as good as the people answering your phones and if they are unmotivated dipshits, you look like an incompetent ass and very well may be if you hired such useless staff.

Sweetp: Saying no. Something most women are not trained to do. In fact, actively discouraged from. However, there is also the situation where feeling needed is an addiction. Not saying that is the case here. But it warrants some serious personal examination. Do you believe the world will stop revolving without you? That you alone are the only person to sail in and save the business with your extreme dedication and going to work even when you're half dead from exhaustion? Do you believe that by working above and beyond what's reasonable you will gain some sort of pay off in the end? This is crazy thinking and I am surrounded by people who subscribe to this particular religious belief and I have seen the fall out when they discover that all their hard work and dedication and saying yes when they clearly should have said no, did not pay off. They learn the HARD way that they have been thinking like idiots. In fact, not thinking at all. Just believing something without critically examining their core values and motives.

It is not admirable to not know when to quit. It is not virtuous to keep going when your own health is in jeopardy. I do not say this to make you feel bad. I say this so that you feel your life, your health and your time is as valuable as everyone and everything else and thus you can give yourself permission to put a hard limit on the work you will do and won't do. You get to draw that line. In fact, it is your responsibility to draw that line. It's called self care. If ever there was a time to care for yourself, it's now. You are perfectly permitted to do that. It doesn't make you lazy or selfish. It makes you a person worth caring for.

bcincolorado

Sweetp you might need a referral from primary to get testing done. I had to do that to get mine done. I was told I could no longer do my current job or hold a job at this point after my testing and that went in with my SSDI claim.

Artista928

Runor just reminded my foggy brain of something my boss told me when I started working for a busy surgeon. I bent over backwards which is admirable. However my boss who is still my friend to this day told me the more you give, the more they want, and you don't get any brownie points. I never took vacay and rarely got sick. Doc loved me, of course. But I was killing myself so worried I'd lose my job. I was the only one who knew how to schedule sx. No one wanted that job with all the rules and them changing all the time. So they figured I'm so good that I'll also cover for absences, do the annual reminder letters, and do eligibility. Wtf?? So I worked myself into a mental breakdown and was out for 6 weeks. Guess what. They survived! People had to step in. Sucked for them but my health comes first. I am alone so a lot of fear of losing my job. But what good would i be anyway if i had a stroke or heart attack from stress?

sweetp6217

bsincolorado, Now I am scared. If the testing results say that I can't work, that's it for me. Toast.

My first appointment is 4 weeks away. First, an interview with the psychiatrist, next, testing on one or two days, then follow up appointment to discuss the results. Then, possible treatment. I'm still calling around though. Because this could take months.

My MO finally got back to me ( I did mention that trying to find someone to see me sooner is almost impossible). They insist that I should follow the neurologist's recommendation: testing, etc. I couldn't be more depressed about this. I know this is giving up, but I am really disappointed with my Cancer team. I plan on saying so by calling them tomorrow. I'm also aware that it isn't all about me. There are tons of people that need some sort of help out there but seriously, my symptoms are obviously connected to PCCI. Are they trying to cover their butts? I just want to try this medicine that has been proven to work (modafinil).

So, I guess I'll give effexor a try. Maybe the side effects that my PCP mentioned are mostly unlikey. Now that I mention it, my PCP prescribed effexor, but won't have anything to do with modafinil.

In any case, I appreciate you all sharing your stories. I should speak up more, like when they asked me to work all Mondays thru Fridays (till the end of time?). I should have said NO so that I could have had at least one weekday off. I still have that option to ask for that even though it may reduce my work hours in some way. After all, the workplace requires an average of 30 minimum hours per week to stay full time AND insured by them. They used to tell me what my average was, but now, I have to do the math myself. Lovely!

Thank you for letting me vent

bcincolorado

sweetp you may be different and recover just fine. I do not know what kind of work you are doing. I was a mortgage loan processor involved with a lot of detailed paperwork and on a definite time limit to get certain tasks done. I could not do it after awhile myself. I have a dear friend who had a stroke and still works in a medical office just fine at a desk by keeping good notes. Every person is different in their cancer decisions and how they react to medications. Do not forget that. You are motivated to keep your job. Best of luck to you and try to remember that.

hapa

If my motherfucking husband touches the motherfucking thermostat one more motherfucking time, I WILL MURDER HIM!!!!!

goodprognosis

Great rant Hapa.

You should write that on a post it and stick it beside the thermostat!!!

GP

runor

Hapa, best post ever!

SimoneRC

Hapa,

I think I just fell a little bit in love with you 😎.

Micmel

Lmfao

marijen

hapa, can you find a thermostat with a lock? Hahaha

Jumpship

I’m tired of feeling hot..no matter how cold I make the room. I’m tired of looking in the mirror and not seeing me. Five years later I look around and my family doesn’t resemble all I worked for, had, and hoped for. Days like today cancer could take me out and I don’t think I’d feel like I missed much. I long for my life before diagnosis. It was peaceful and fun and full of love. I’d love to talk to my elders about this... but dementia has taken them away and the universe hasn’t replaced them.Just sad today.:

Trishyla

Sending hugs, Jumpship. I've been in that place more times than I care to remember. Take care of yourself. Ask for help if you need it. I didn't, and very nearly "jumped ship" last December. Most days I'm glad I didn't, but not every day.

Be well.

Trish

Artista928

I'd put it on a sticky by the thermostat and sign it, anonymous..

Betrayal

Jumpship:

You are alone and thank you for openly expressing what a lot of us are repressing. It's not easy being us and no one understands that more than the people who post here. We are here for you, just reach out. You will not be judged. Sending a big hug.

Betrayal

Hapa: Your post made me laugh! I would go for a poster rather than a post it; size and visibility matters when you make threats. Yes, there are locks for thermostats. Did he get the message?

hapa

DH did not touch the thermostat last night. He also slept in the guest room, which is the warmest room in our house. Even better, this way he's not waking me up at midnight when he comes to bed (which is also when he turns up the thermostat -- to 80!). I think the dog is on my side. He and I slept soundly last night, for once.

Artista928

My dad likes 80 too. I like 65 to 70. Glad I don't live with him. You can layer up but not down.

AliceBastable

Hapa, your post reminds me of something I saw decades ago that has stuck with me (and I've always wanted to use):

Memo

Dear Sir,

Fuck you. Strong letter to follow.

Sincerely,

John/Jane Doe

WC3

So listen to this!

I had exchange surgery a while back, which my insurance must cover by law, and was medically necessary, but for some reason, after receiving approval, I received a notice of denial on the grounds of it not being medically necessary. I made a few phone calls and apparently the denial was in error as far as anyone can tell, but curiosity drove me to look up the doctor who generated the denial.

He's an ENT! An EAR, NOSE and THROAT doctor!

An ear nose and throat doctor was, at some point in time, given the authority to decide what I could and could not do concerning my fake breasts and to override three doctors who actually specialize in breasts!

How is that even legal?

On another note, about the heat, hot flashes, and sleeping, I've discovered that as long as I can get the temperature below 80F, sleep in my underwear on top of the covers and remain as still as possible, I can keep the hot flashes to a minimum long enough to fall asleep.

Back when I did not have AC, on particularly hot nights I would buy a bag of ice, encase it in a large ziplock bag, wrap it in a towel, and sleep next to it.

jaycee49

Below 80 degrees? You couldn't sleep with hapa's husband, either. Validation.

WC3

jaycee49:

My ideal room temperature for sleeping is currently 68F, but I can only get it down to 78F right now. However, 10 years ago, before I was diagnosed with hypothyroidism, I was cold if the thermostat was set to anything below 80F. I thought it was broken. Yet when my Synthroid dose was upped by too big of a jump, I could sit happily in a 55F room in a short sleeved t shirt.

Now, I have just about no thermoneutral zone. Any time my body temperature rises a bit I instantly go in to a hot flash and any time it drops a bit I get cold.

MelissaDallas

I think a lot of older men who previously would have tried to freeze you out of the house/office start getting cold all the time when they have to be on warfarin or other blood thinners. I go to my parents house and Daddy has the heat cranked up until the rest of us can't stand it. My grandfather did this too. They were decidedly not that way when they were younger.