STEAM ROOM FOR ANGER
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When I leave the scanning department, I email my onc nurse practitionerand cc my onc, and say, “I had my scan this morning. Please send me the report when convenient.” They email me a copy or at least the Impression part that day or the next. I guess I am lucky. Also, they know that I have the necessary background to understand the report.
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I feel that even if everything hasn’t changed, a courtesy call to tell me everything is fine is still warranted.
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Maybe find another mo who's known to call even if everything is ok if this one never has. Or ask the staff to put a note to call either way when you are getting told to have something done. I've worked in a busy surgeons office for years. It's busy. Some people actually don't want to hear unless there's something up. One thing in the medical field, you need to be your own personal advocate. Yes it would be nice if they'd call to say something is fine but that isn't always possible.
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Not feeling so good today. Trying to immerse myself in my work but I hated leaving hubby this morning. He said he feels like a hermit. He finished chemo this week and had the neulasta shot yesterday, so this is where he goes down. @Jelson, yes we have been using the claratin. We are going to flip flop the Advil & Tylenol to see if that helps. He even has gummies and brownies. I just know he's probably having a cry right now. I'll go home for my lunch hour. I also hate asking for time off because at some point in the future I'm going to need it, so don't want to be using it if not critical.
Just as we all get anxious around test and appt. time, it has started for me. He gets scanned next Thurs. and I am really scared. Trying some classical music to remain calm. If I had pills, I'd be taking a bunch of them (LOL). So helpless. Mad at my left side, I must have slept too long on that side. Arm is hurting, advil not working. So far, no bruising has shown up on my distorted left breast, it is just sore and have the full feeling. Please dear Lord let me heal!
Pondering what in world we can do to stay busy and distracted until we get results and go to next appt. which is Feb. 6. Any Netflix or movie recommendations? Maybe I'll look for a new recipe to try. Ladies, wishing you all well. Have a Happy Friday and a wonderful weekend.
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oh ctmbaikia! Hugs! It am sorry this is such a difficult time! I have been dealing with some new results and started watching Schitts creek at my daughter’s suggestion and it is so stupid it is providing some relief!
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Ctmbsikia, this is going to sound bonkers, but as a distraction, start reading a book together. Out loud. Read to your Hub like you would to one of your kids. Reading and listening to reading requires a different brain activity than watching tv. It is a whole other immersive experience. Listening requires attention and giving that attention takes some focus off other things, like pain and anxiety. Or it will cause Hub to easily drift off into a happy sleep and that can have its benefits too.
When my daughter was a young teenager, we read aloud as a family. Lots of people thought it was odd. Grown families watch tv together. But sometimes I read a book, The Yearling, To Kill A Mockingbird, The Last Coin and all the Harry Potter books (those were a slog as read alouds!). But those times sitting around, engrossed in a tale as it unfolds, stay with you in a way that tv watching never does. It might feel awkward and weird at first, but stay with it. I believe it has all sorts of therapeutic benefits. Hugs to you both.0 -
Runor, I second your suggestion. My husband and I found the gift of reading together on road trips. I prefer it over books on tape. Reading aloud holds my interest and it does make you change focus...it clears the mind
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I have been doing one puzzle after another. We also watch shitts creek. I am really getting worried about my mind!! It seems I can't remember if I turned off the tea kettle/made tea/can't remember how to spell words/can't think of the word I want/ etc etc. I start doing something and then forget what I was doing. It seems all I think about is this stupid cancer and i'm pretty sick of thinking about it!!
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ctmbsikia I'm so sorry u have so much to worry about. My thoughts are with you altho in a minute I might forget only to remember 5 min later. I'm sending u good thoughts right now tho.
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kid1919... same with the memory thing here. Only I'm not worried about it coming back. I figure it will. I worry about is it early dementia signs or anxiety/depression.
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No shit! Me too (dementia) My only reassurance is my sister in law has lymphoma and she can't remember a thing either. Already have the dx of depression and anxiety in the past. Or maybe present. I can't remember!! LOL
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I have severe anxiety and depression diagnosis. No cure, only treatment...like cancer.
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What I hate is when u fill out a health hx and u put down depression and anxiety right away your listed as a nut case and are frequently blown off as a nut case when u voice your concerns, ask ? etc. I told the OC the woman u see going over the falls is going to be me. His reply was he can keep me alive til I'm 100. Yeah looking forward to that.
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I only talk to my psychiatrist because that's who gives me meds to help take the edge off. No point in talking to anyone else. It's all think positive, you'll be ok, etc. Just like no one in the family but my sane bro knows about my bc either. I need peace or my anxiety will get worse. Works well.
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I get pissed at my primary doc because all she talks about is weight. I switched to her last year, and she freaks out because I've gained weight since my last surgery in 2018. What she ignores is that I'm just slightly above my old weight - and not near my highest of a decade ago. I lost weight because I HAD CANCER (honestly, that kidney one just sucked the pounds off!). So I gained it back, plus a little from quitting smoking. Would she prefer that I have cancer and smoke non-stop?
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I get the weight lecture from my cardiologist. I’ve been at this weight for years, as long as I’ve been seeing him, about 30. I make the right noises, get to my car have a good laugh.
PCP is another story. I like him, all staff. He’s a mile from home. My last a1c was 5.6. I wasn’t trying for it, have never been that low. EVER. He wants me at 7. If you don’t have diabetes, 7 puts you at risk for all the nasty complications that can kill you. Uh, cancer will most likely do that. I’ve spent the last 20 years with this. I have 0 complications from it. Don’t plan to either. My Endo is ok with my #s.
See MO Monday. More fun.
Sorry to hijack this. Had to get that off what little chest I have.0 -
Excuse me gals for this but I got news that really hurt, so I need to vent
Damn cancer! Now your taking a loved one. Wasn't it enough that you took my good friend in November? Why can't you DIE!
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Mommy I'm so sorry. I have no words.
Runor thank you for the suggestion. So cool that you do/did that! My daughter has a master's in elementary education and is employed as a reading specialist. When we were in the hospital last fall, she saw the letter T written in the wrong manner on the board. She gave us a 20 minute tutorial on how a child would perceive that as a number and not a letter and all the steps it takes to put the writing, reading, and comprehension together to get them to understand the English language. We are quite proud of her.
Spoonie, no hijacking, this is one thread where I feel comfortable posting. It's not about any one poster in here. We all have *ish!! going on!!!!!
Alice B-you are one of my faves since I've been here. Wishing you well lady! As well as everyone else. Truly.
I've started to go thru hubby's business stuff and get ready for filing taxes. We are a very small one man operation. Since he doesn't use a computer and hand writes his invoices, I've got a few hundred paper receipts on the table and I just opened a bottle of wine in the middle of the afternoon. It rained heavy here on the East Coast this morning so it's a definite "not getting dressed" day. Hub is doing OK. Not moving like he would want to, but sorting through his paperwork is something he can actively participate in. I keep asking, WTF is this one for? LOL . I do his books by hand as well, keeps the mind fresh, plus I suck at spreadsheets!!!
Will leave you with some lyrics to a song that is now my anthem. It's about a struggle. The author found a way thru. Hope we all do too. Carry on.....
The Wall
I'm woven in a fantasy
I can't believe the things I see
The path that I have chosen now
Has led me to a wall
And with each passing day
I feel a little more like something dear was lostIt rises now before me
A dark and silent barrier between
All I am, and all that I would ever want be
It's just a travesty
Towering, marking off the boundaries
My spirit would eraseTo pass beyond is what I seek
I fear that I may be too weak
And those are few who've seen it through
To glimpse the other side
The promised land is waiting
Like a maiden that is soon to be a brideThe moment is a masterpiece
The weight of indecision's in the air
Standing there, the symbol and the sum of all that's me
It's just a travesty
Towering, blocking out the light and blinding me
I want to seeGold and diamonds cast a spell
It's not for me I know it well
The riches that I seek
Are waiting on the other side
There's more than I can measure
In the treasures of the love that I can findAnd though it's always been with me
I must tear down the wall and let it be
All I am and all that I was ever meant to be
In harmony
Shining true and smiling back at all who wait to cross
There is no loss0 -
Thanks CTM
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sorry mommy! It truly sucks.
Ctm love that song! So captures the struggle!
I too am currently bummed, have to cut short a trip to my happy place after a questionable biopsy. Now facing more surgery! This disease most certainly sucks!
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Thanks Benny
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ctmbsikia
You always amaze me with how you manage to cope with so much going on with your family. You remind me of a good friend who has major health issues including MS, then her husband developed an unbelievable amount of problems (Heart attack! Bowel surgery! Head and neck cancer! all within a year or so), then SHE had abdominal surgery. Half the time they don't know if one of them is pushing and the other pulling, but together they keep moving forward.
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I just returned from a visit w my brother who has stage IV esophageal ca and has a feeding tube in his intestines. It came out during the night and nurse was scheduled to be there at 9:00 am. SIL went to get an overdue haircut while I stayed w bro. The nurse (who was 2 hrs late) read me the riot act for not taking bro to ER immediately. I was so pissed b/c for 2 mo they refused to give him a feeding tube despite him not being able to swallow food AND no one told bro or SIL that if tube came out he needed to go to ER immediately. Seemed to me that the medical folks dropped the ball and then blamed us. I wouldn’t be so mad if they had taken just a little of the responsibility for poor pt instructions. Had we known the critical nature, of course we would have taken him immediately, but w the 2 mo refusal on feeding tube it seemed like THEY didn’t think him not have any nourishment was critical. He is 6ft tall and now weighs 110 lbs. I guess my anger is being fueled by my fear. Thanks for letting me blow off steam.
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Yogatime, I get it. My 83 year old dad, who has had multiple hospitalizations this year for heart failure, went back a few weeks ago because the hospital, on his prior hospitalization, had not addressed his extreme sore throat/swallowing difficulty on his LAST hospitalization, despite multiple times raising the subject. Turned out he had esophageal erosion and or ulcer, so no surprise about pain. Also turned out this was causing aspiration on swallowing, so then they refused to give him anything by mouth for the duration of the hospitalization (five days!) because of liability issues-and he no surprise, wentway downhill.They were insisting he have a feeding tube (because of liability of aspiration) so wouldn’t let him eat or drink, but we disagreed with making him miserable for the duration of his life. Now on hospice, but jeez...
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Yoga, my brother's mother in-law just went thru rads for that type cancer and they were taught how to remove, flush and re-insert her feeding tube. It's maddening!!! Why are we always the ones looking for the information when we're NOT the ones that went to medical school!!!!!!
This morning I'm reading about side effects of chemo (chemocare.com looked like a good site) and abdominal pain. I also read here too. Hubby having pains, not constant but enough. Plus the fatigue. Trying to learn signs, symptoms -does it/can it be serious? Is the chemo eating away all his good cells? How will I know? Maybe it's more mets? Who the hell knows!!!?? He is eating well, I should ask him to lay off the milk. He likes his cereal, lower fiber? No idea what meds to try. Or do I do nothing and hope that everyday these pains will lessen and he'll feel better?
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Thanks for all your understanding and support everyone. This road is pretty bumpy right now.
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ctmbsikia: I had chemo every 21 days for 6 cycles. During days 3 - 11, my SEs would be the most severe and I would get abdominal pain. The abdominal pain always went away when the SEs subsided. But after my last chemo, the abdominal pain never completely went away -- still had mild discomfort. So my MO sent me for a abdominal US, then a CT. The CT showed an abscess (diverticulitis), so I was instructed to go to the ER and get myself admitted to the hospital. I was kept in the hospital for 5 days while they drained the abscess and gave me IV antibiotics.
My MO never said that the chemo caused the abscess. But the internist at the hospital was pretty certain that chemo was the cause -- she said that she sees this quite often! I was surprised that my condition was that serious cause I didn't have constant pain.
So see what your husband's MO says about the abdominal pain. I hope he gets answers and relief.
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I haven't posted in a while. I was diagnosed with triple positive breast cancer 1/25/2019 and the past year has been consuming. Had my mastectomy 8/8 and exchange surgery 1/15. I start radiation in February.
Anyway cancer has a way of consuming my thoughts and some things get put aside. I was adopted when I was a baby. I didn't know till I was 30 yrs old. My husband told me. I was pregnant with my eldest and my dad's neighbor thought I should know so she told my husband. He kept it a secret for almost a year. Poor guy should never have been in that situation. My adopted mom died when I was 27 and my dad had a massive stroke when I was 25. My dad wound up living with us and my husband felt I should know. First time I saw him cry (second was when I was diagnosed).
I got a very little bit of information from my dad and contacted the NY foundling hospital. A nun wrote me that my birth mother was a heroin addict and used while pregnant. I was born breech birth 2 months early. I weighed 3lbs 14oz. I spent 8 months in the hospital. NY foundling could not provide any indentifying information. That was 27 yrs ago.
So 4 yrs ago my daughters bought me a DNA kit for my birthday. I was matched with about a dozen very distant relatives. In December I got an email of another match. I didn't look at it till last night. I was matched with someone who was either a first cousin, uncle or nephew. I emailed him this morning and texted my best friend who lives in NY about what happened. Turns out NY just changed their law to now allow adoptees to obtain their pre adoption birth certificate. I filled out the paperwork and mailed it this afternoon. It appears the gentleman I reached out to may also provide a ton of information. It looks as though his grandfather may be my father.
What a crazy year this has been 😲
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