STEAM ROOM FOR ANGER
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Fotheringay - I forgot to mention that if the radiation caused all these issue, I really think it sounds like autoimmune diseases wreaking havoc, perhaps scleroderma. I say this because I am going through the same thing and have been studying this connective tissue disease for a week and I know that is is contraindicated for having rads, not a good mix.
To all who have shared with me about dear daughter - I appreciate the compassion and shared experiences, it helps. I cannot toss her out but have wanted to set limits every day. I NEED to know she is safe and I know she has no where to go, especially with a dog in tow. But I can continue to ask her to do this and that and yes, perhaps even give her a daily list, perhaps. But the resentment and sadness I feel is mine to carry though knowing she will face this someday, she definitely will. Meanwhile, I also spend time appreciating the fact that soon she will be gone and I may never see her again, thus the time she is here is important to me. Just cannot believe she is so selfish, you know.
Lita, keep us updated, say what you need. It sucks, what you are going through.
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Bluebird DE,
I was moved by your post.
Your time here is precious too and you deserve to be treated with respect.😊🌷
No one can tell you what to do with your children - too complex. And mother daughter relationships are the most complex of all.
But ultimately you have to consider what you are teaching, as independent of her age and current marital status, you are the parent in this relationship.
A small board, a share of utilities and groceries bill and an agreed upon set of chores seems the minimum contribution to being part of a household.
As to any kind of thought that because you have cancer she might one day - well it's possible (the 1 in 8 overall risk is a little higher with a family history) but unless you have established genetic testing - look at the literature and wipe that thought as "definitive". Hopefully she will be wise to monitor herself closely and if and I say IF, it will be diagnosed very early.
(BTW my mother and I have breast cancer but no BRCA)
My probably worthless two cents but the overall message is cut yourself some slack and gently shift some of the responsibility on her big enough to get married shoulders.
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Fotheringay, I'm so sorry to hear all that you're dealing with. No wonder you've been struggling emotionally! I'm no expert, but you sound like a woman who deserves a good whine right now. I like bluebirds messages to you. Sometimes when I'm overwhelmed it helps to have someone say do or consider A,B and C because I just can't get my thoughts straight. I hope you get a break soon and meanwhile keep posting.
Bluebird, I agree that mother daughter relationships are complex. My DD has seemed more self focused than usual lately too (not as much as yours, but each person is unique). I think it's her way of dealing with her fear about my dx. And like you, I'm still the mother and would never want her to have to live with guilt if anything happened to me.
I came here feeling sorry for myself this morning, then I read some other posts and realized I shouldn't feel so bad. Well, I still do have BC so I suppose a little pity party is okay, but once again I'm in awe of the strength I've found on this site. Guess I need to shake off my blues. I finally get my pathology report tomorrow and I'm praying for good news. I want to feel normal again so much
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I guess I am extremely lucky. My daughter is the best daughter I could ever ask for. She's a nurse in California and flies out to see and help me when she can. When I was in need of a shower chair a couple of weeks ago she just went on Amazon and had one shipped to me. She works long 12 days while struggling with Lyme disease. My four year old granddaughter has it too. My daughter and I are close. My three boys are the same. They help us when they can. I am truly blessed.
All the so called friends, well that's another story. When you get sick you find out who your real friends are. Don't have to worry about counting too high. Same with some family members. I have to constantly weed my garden and pluck these people right out. It has been a hurtful rude awakening but at the same time it has allowed me to be closer and be with the ones who really care. So in a way it's been a good thing.
Hope everyone has a blessed day
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Lita, I'm sorry you are having so much pain.
I have a question for you all, does anyone else not know what to say when the doctor asks you what your pain is out of 10? I hate that question!
I'm sure I downplay it, usually say it's about a 5 or 6. Then my husband jumps in and says No, I watch you and hear you and it's more like an 8 or 9. I don't know if I'm just used to it now as I do have a high pain threshold. Then I think, what if it's worse next week, I've left myself nowhere to go on the scale. (I've been awake for 48hrs, so kind of rambling).
Bluebird, I do understand where you are coming from with your daughter. You do need to set some expectations and boundaries in place though, because it's just not working for you as it is.
Welcome Fotheringay, I do hope you find a way forward. Our local cancer council has people who can help with paperwork and dealing with government bureaucracy, is there something like that near you.
Dianarose, how wonderful to hear your family brings you so much joy.
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Pain scale - Hubby does the same. It sometimes makes me want to leave him in the waiting room. But I need him there, advocating.
And they ask what is it right WOW. Well 5 now but they weren't monitoring and don't seem to care what it was last night at 8. I watched a movie where the young girl always said 9 when it was bad, never 10 and she was asked why. She said she was saving 10 for when she knew it was going to be over.
You know Fotheringay - on this site there are legal forums too. And what Freya suggested too. The assistant doesn't have to live near you since the computer world and PDFs make it possible to accomplish most anything.
Daughter, today is her 33rd birthday. Wondering if it is acceptable to ask her to do dishes from last night even though it is her birthday. I asked Hubby, he laughed, said, "Why not?" OK, just sent it in a FB chat message so I cannot chicken out. It is so hard to ask for anything, let alone someone that fights back like she can. She explodes and has actually yelled at us for the simplest stuff - not for a long time now since we walk on eggshells. She is very intimidating because she fights dirty. But she looks so sweet.
Well, thanks all, I am trying to have more backbone one hour at a time. And the daily chore list is the best thing I can do for me. Just like when she was little and in high school. Remembering she had a best friend whose mother got on my case saying we used her like a little slave. We didn't, she had chores and we all did and things got done. I worked the hardest because I didn't want it on the shoulders of the others.... Hubby worked at mill and home, I at my business and at home, her at school and home and a horse farm. Well she said OKAY when asked on the FB message to do dishes from last night. That was easy I hope, no glitches on the horizon.
Last comment, about the stranded abandoned dogs. If I go my dog goes, if I die trying to save us, probably my dog dies but I tried and I wouldn't leave him. We are in this life together. Til death us do part and all that.
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Thanks Bluebird and Brightness for the kind words and concern... I needed to, well, emotionally vomit last night.
I texted my ex-SIL, who I remembered was a rheumatologist after I posted. We are on cordial terms. She agreed to talk to me on the phone later today. I want to ask her if seeing a rheumatologist actually IS the correct next step for me, and if so, what tests she would run under the circumstances.
I'm going to a friend's house later for dinner and Game of Thrones, so I can get out of my head.
I did some paralegal studies a while ago, so I'm already building my case on my own as best I can, doing research, so I can hand a pile of medical records and tests to an attorney. Give him an outline of events and let him take it from there, frame the case. I'm doing this to save money and hopefully, win on the first appeal. It's been hanging over my head for months, stressing me out daily. If I can get this done with, and WIN, I can just live and try to get better. I know things can get better if I don't give up.
And I pulled the bottle of Tamoxifen out of the drawer. Not quite ready yet, but I'm preparing myself for The Big Gulp.
Peace to all here today-
Carrie
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Fotheringay, may I suggest seeing a palliative care person, too?
Keep in mind, palliative care is NOT hospice. Palliative care is for anyone who's facing a difficult illness/condition that limits one's physical and mental abilities. some of these people are quite good at helping with pain, depression, getting you set up with meals and help around the house.
It's okay to rant when u need to. We all do.
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Hugs, Carrie - enjoy your games. Today am watching some movies I have seen before. Making hot German potato salad and brats w tomato salad. Bought cupcakes for DD's BD, I usually bake. Feel ucky from Xeloda and even put off making the planned fried chicken - chose easy brats instead. Sometimes we especially have to take it easy on us. Not even brushing the dog the rest of way. He's happy about that.
Had asked DD to do yesterday's dishes so when I got home I could cook, got home, dishes still there and stove not cleaned. Told Hubby I don't want a war, just let her remember and get to them. So he washed one skillet I need and she came rushing in, apologizing, she forgot. She did it all. We have progress. We should not have to ask at all, she's grown and able and intelligent. But Hubby and I decided a list is best, different things each day so she is not always on dishes which are really the easier of the chores. But it leaves me feeling very nervous.
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Ok I've been putting off my rant for two days, as I came to rant then read what you other ladies been putting up with and felt like my issues were not as bad. But I just have to vent a little.
For the past 5-6 months I've been battling fatigue. I haven't been so fatigued even when doing chemo. I am to the point that I narcolepsy left and right, I'm awake at most 8 hours a day, sometimes only 6. I went to see the dr in June, blood work showed high protein, had the follow up last Friday, as things were getting worse not better, and this time I had more abnormalities, not only high protein, but also high calcium, and high albumin. They called me home later Friday, they're contacting my oncologist and I'll have to go in for more blood tests - they're afraid that the blood work might show not necessarily a breast cancer recurrence but "something else". I did a little bit of google legwork, and the something else could be multiple myeloma. Tomorrow can't come soon enough - you know when you get on a cliff hanger Friday late afternoon and you just are a wreck of worrying the whole week-end until you manage to talk to someone Monday.
I don't even know what to think anymore. Between not being able to even do proper housework and what needs to be done, sleeping my life away, dealing with chronic pain - I know, I'm not Stage IV, but I still hurt.
And I'm scared.
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Hi Seachain.
I know very well what you mean about having an issue that doesn't seem like that big a deal in the grand scheme of things, compared to many others, but happily this forum doesn't keep score, and your rant is as welcomed as anyone else's! So rant away.
I am also guilty of hitting Google when a new slew of symptoms hit me, and I've spent hours going down rabbit-holes that ultimately were a waste of my time and worry. I KNOW it's hard not to do, but please take everything with a grain of salt. I can understand why you are so rattled right now; waiting for answers is truly maddening. And adding chronic, unexplained fatigue on top of it just makes it harder. I've also had unrelenting fatigue for months, and I'm looking for answers, too. It just sucks!
In the meantime, I will be wishing the best for you, as I'm sure many others here will be, too!
Carrie
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That horrible moment you feel yourself slipping getting out of the shower. Feet sliding out from beneath you, arms flailing around madly. My only thought was, please dont let the paramedics find me naked in an unladylike position with my legs in the air with everything on display. Cracking my head on the tiles or going through the glass didn't rate a thought LOL.
I'm sorry you are scared Seachain, and I hope you get good news today.
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Freya, hope you're okay! (Be sure to count all that falling & flailing as exercise) And, Seachain, I'm adding my prayers that you get good news today.
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Seachain - Cliffhangers on Friday are never good. Especially when it involves an oncologist at the bottom. The wait is stressful and we have too much Google time. I do hope you are having good news. When was the last time you were at oncologist for labs and appt?
Wildplaces - I do wish my daughter would take seriously the autoimmune hypothyroid that runs in my family and the MTHFR gene characteristic that keeps us from naturally detoxing and unable to absorb folate. That could help her to perhaps avoid the downhill spiral that includes cancer. You know I don't think or suppose karma will get her someday. When I say she will understand someday I mean that I believe she will face her present actions, that someday it will hit her whether I am dead or alive, that she could have acted differently and not made it all about her.
Freya - you really fell? Are you all right? Did you break the door or a limb? I never want the paramedics to come get me, when I feel like heck and think I need an ER I actually start getting cleaned up, even a shower would be nice but not wise. In March I woke up with my left hand completely numb and curled and it lasted a half hour or more. We called the ambulance because it COULD have been a stroke though I had nothing else except high anxiety. I had Hubby help me get all dressed and was charmingly waiting in my office chair to be taken away. They probably had never seen anything like that. I am quite impossible, I know. (Problem had been low oxygen in the night from excessive coughing and blocked airways from the cancer node masses and my lung gases became out of balance, in short.)
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So what I found out today is that "we don't panic... yet". There still a couple more tests that will take a few days to come back. At least I know everybody is on top of things.
I slept again about 18 hours of the past 24.
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Seachain, I am hoping only for the best for you. Yes, those three things being high could mean multiple myeloma. I've had the precursor to myeloma for 17 years now without "progressing" to multiple myeloma. The precursor is called MGUS, monoclonal gammopathy of undetermined significance. It is a scary condition too but much much better than being diagnosed with myeloma. (MGUS is usually a benign condition that just needs regular blood tests and monitoring). Hoping you just have that or some variation. Glad your doctors are on top of it. They may suggest a bone marrow biopsy which for some people can be painful; if they want to do one for you, I would recommend you get the conscious sedation for it (the same thing they give you for colonoscopies). It works great.
Good luck.
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Hang in there Seachain, we are with you.
Bluebird, all that flailing managed to save me. It did make me realise I should get a handrail in the shower though. You sound so much like me, I too got myself "ready" for the ambulance last time I needed them.
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I know it is worrisome to be so exhausted. Sleeping is also healing time. If that helps at all. Can't wait for everyone's tests.
I have requested my high definition chest CAT scan and the Echo to be mailed to me. I will get them before my doctors. Didn't know until today that it is allowed. From now on, always.
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My CT of the chest was on my phone app before I drove home from the hospital last Wednesday.! I pulled over out of traffic to read it
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Lita, Sorry to hear bad news. Cancer sure is awful disease. Will keep you in my prayers.
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Electrophoresis results are in. High albumin and high gamma globulin. This doesn't look good. If it wasn't for the fatigue, balance issues and toes going numb, also calcium being high and Alkaline Phosphatase low, I'd be hoping for a benign gammopathy. As it is.... Now I got to wait for them to call me.
Is the bone marrow biopsy very painful?
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Beatmom - an app on my smartphone, just don't know I am ready for that yet. hahaha. Hope your news we positive?????
I am going for labs Friday. Will be 11 days before onc appt but I want to see what the WBC and such are while I am actually on the end cycle of Xeloda. The oncs are not testing every two weeks to make sure I am safe from low WBC / neowhatever. grrr. Taking it in my own hands. I have the lab orders in my wallet.
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Seachain, while I have not had one myself, my DH has and has a pretty high tolerance for pain and said he felt pressure. I know they usually give meds so it helps numb area and discomfort and calm you. If you (like me) are a needle phobe I'd ask for LOTS of meds. Will wish for the best.
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I'm not a needle phobe and have high pain tolerance - when i get steroid shots in my cervical spine I refuse sedation. It just seems like it would be very painful.
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Trying not to be miffed, but..
I get a fb message from my bff who's going to let me stay in her place which is a 1 level house to help me for a couple days or so after sx this Fri since last time I did need help, esp getting up from that lounge chair to go to the bathroom. My bro has always been up for sxs, always on hand and a big help. This time LA schools have started already and he has a project he can't leave so no bro this time. So bff is asking me if it's ok that she go with her dau and her kids to half moon bay Sat and come back Sun if she sets me up and her bro Anibal is on hand to help. That would be fine except for one thing. He's a druggie and an alcoholic. He always has great intentions but sometimes does things which is followed by a I'm so sorry. He doesn't like being home all day and is famous for going out for long periods of time. This would be a prob as that'd leave me stuck in a chair I can't get out of on my own to go to the bathroom or stretch or whatever. I'll admit I'm a bit miffed that of all the warm weekends that this one is chosen to go to hmb on the coast. I understand her dau in Sac are looking at 120 temps and want to escape the worst which is Sat/Sun and she'd want to go along but she's known about my sx for awhile now. I come from a fam that would never ask this. There's a/c in her house. Leaving someone out from sx with an alchy/druggie who is very nice and usually very helpful but you don't know if he'll suddenly disappear wouldn't be on our radar. So after I calmed down I wrote back saying "I guess. Hopefully he won't disappear or for long as I'll need help out of the chair like what bro did for me last time." We all stayed at her house so she saw bro helping pull me out of the chair, even a couple times in middle of the night. His room is all the way down the hall. Bff has a roomie in her mother's room since June where the bathroom is right next to this chair in the living room. Can't use it so I'll be making my way down the long hall and into her bathroom. I won't use his in the hall because he's hep C, who knows if he's currently infected, and I can bet the bathroom isn't sanitized. Not a good thing just out of sx. I never use that bathroom when I go over there, always hers in her room.
Really trying not to be a shit but I also know how I struggled and with her bro as my 'help' ...we'll see. ugh
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Gosh, It's too bad you can't stay some place else.
My head is hurting, so I can't write more.
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Lita- in my thoughts and prayers always. Know you are loved.
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Seachain, before I had a bone marrow biopsy I was told it would be uncomfortable, lots of pressure, and some pain felt for a second or two when the marrow was being drawn into the needle, something about breaking the vacuum. My experience was very painful, but it wasn't a normal biopsy. I had numerous rads to that area for bone mets, and the marrow was all dried up. They could not get a sample with the needle, so used another instrument to scrape out some. Until that point is was quite doable. Just thought I would mention it in case you have had rads to the pelvic area.
Artista, I was wondering, is needing help to get up from the lounge the only reason you are staying at her house? I hired an electric lift recliner for a friend after he had heart surgery. He was just too big for his wife to help up safely. It was about $40 per week. He ended up sleeping in it as well. It reclined flat, and then rotates up until you are in a standing position. Just a thought. I know I wouldn't feel comfortable being left with her brother, however nice he is. He is not reliable.
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My whinge for the day, the size of some tablets!! I have been sick for the last couple of weeks, when I was first ill my GP took a swab and it turned out I had influenza A. Australia is having a bad flu season, and even having the vaccine didn't totally protect me. Anyhow, it has now turned into an acute respiratory infection. I am on a 10 day course of Augmentin, and these damn tablets are HUGE! Whinge over
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OMG, Freya, I thought you were talking about computer tablets! Finally got it in your last sentence! And, yes, I agree, many pills are way too big to safely swallow!
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