INSOMNIACS place to talk in the wee hours
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For anyone needing a laugh today:
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Thanks Wren--I need one.
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funy you mentioned I also have those days. I am with you 100%. I love this tread cuz when we feel like that it's ok to vent
Plus when I did chemo I didn't have you ladies. It makes a great difference to just have a group of people who know exactly what is like.
Here is a note I found
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GOOD MORNING OWLETTESS IT'S 3:29 PM EST. THE DAY IS STARTING YAY.
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Susan good luck with this new chemo. Have faith ( as you've always had) that if this chemo stops working there will be another "something".
I talk with PhylisswhomImisssomuch almost daily, I have permission to update you on things when she's spinning to much to sit and post. With Phyllis that very "something" keeps happening. She's leaving Friday to drive to Houston for the assessment for the clinical trial.
Something unexplained happened to her last Monday a week ago. All of us have no idea about why all the troubles happen, but then marvel at other things. Last Monday she went for chemo. Her port was blocked. The nurse called for orders to unblock it. Declotting a cath takes several hours. Her doc came in towards the end and said she had just gotten off the phone with the Trial Doc Guy. Her doc said she fit the criteria.
Phyll's ddoc had made several calls the week before without success. Mid-morning Monday they finally connect.
The unexplained---the cath was blocked. If it had not been blocked, her doc would have done her pre-chemo assessment and the drip would have started. Had the drip started before the phone call, Phyliss would have been in eligible for the trial.
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33333333333333333!! Hi kiddo! So glad you "joined" us! We all have either Mom's or MIL that either ARE or were the same way. Can't talk about my MIL.... she was not nice even when we were all together... And she was even less of a Grandma ro our Daughter's.... Her loss!
My Grandma was VERY demanding.... so much so, that sometimes when I was taking her somewhere, she was always telling me HOW to drive, and how to get there, and this from someone who never drove!
Well she tried one time, but Grandpa said she drove into a Lake, so she didn't drive again. But she was such a CRAB! Sometimes I wanted to shove her out that car droor, and then drive back over her!
But it all changed when she had a heart-attack! I was the only one she remembered, and her Dementia came on so fast! So she was not mean or crabby any more~ .... just mostly helpless, and dependant on me! So I was the only one in her life.... And I would run to see her either at the AL home, or eventually to a few nursing homes.... She was like my little kid.... and it made her so happy just to see me! Amazing how your feelings can change completely.... I think it happened so I would be more patient with her, and I think God knew that I needed her in my life at that time.... My little grandma..... In fact she was my step-grandma, a little German woman, who thought she could rule the world, and every-one in it! And man, she tried!
Time and love changes everything..... right?
Peppermint! I miss her already.... But she was in a good mood this morning! She said she was probably pregnant, is why she was so dizzy all the time in the mornings!
I said Couldn't be Eddie's, could it? And she just laughed.... Then my DH was at her front door, and a guy came up, to inquire about an address in the next block! Theresa asked who it was, and he just said "some guy!"
And she asked if he was good looking?
I said, "Oh give the guy a break, you are alREADY pregnant!" She told me I was her girl-friend! That made me so happy! Yes, we talk that way all the time... I just hope I have her sense of humor when I am 90..... shut up Cammi...! No I am not!You guys, she is laughing her butt off.... I just know it.
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Nettie it'd take many questions re: your pain and the W's related to laying and standing. But I can react right away to the " If I try to shrug my shoulders together in the back, NO WAY, pain is really bad!". The Trapesius muscle attaches on the thoracic spine, the shoulder blade(scapulla), and the back of head(occiput). It's a bugger of a muscle when it's unhappy. It'd take forever to explain why. The standing and sitting thing are very significant too. The overall problem is twofold or perhaps three maybe more. But I'm on a flow of thoughts.
There are two separate issues. The fear, and the physical pain
1. You're scared of mets. Your posts clearly communicate that you think you have mets. No one's listening to your complaints(medical usage) to verify mets, and why you are having pain. The fear, you need a counselor. This is a long road. You need a plan to help with the fear related to cancer. Next.......
2. Physical pain: With Breast Ca met'sing to the bone because of the cells growing from the same germ cell (all cells arise from either the endoderm/ectoderm/or mesoderm), why your docs aren't responsive to your complaints is unusual. When four doc's don't want to order tests is unusual. It could be that the referral from the MO has written or said something in it, that makes the referral doc consider that your complaints aren't real.
The MO could have ordered the tests needed. Referrals out to consultants aren't a requirement, because a test related to the skeletal system would fall under the scope of practice of a MO, for this disease of breast cancer. Please, make sure you fully understand that sentence. Very important to your situation.
Asking the MO two blunt questions. Basically, "Do you not believe I have bone pain?" " Have you communicated verbally or in writing anything to the referral docs, that you think my complaints aren't real?"
The reasonable sequence for complaints of bone pain after a diagnosis of breast cancer can be the following. BUT, BIG BUT-- it doesn't have to follow this sequence. As you know insurers want the cheaper tests done first. BUT with a cancer, jumping to a higher level test is done everyday in the USA. Canada is quite different, there approval system has different controls.
Sequence by cost: local xray> ultrasound> MRI> PET. CT scan is better for soft tissue, and MRI is better for solid organs and skeleton. BUT all the tests are being used in new ways as the equipment and the radiologists, become more sophisticated(better).
Your complaints encompass most of the spine and the pelvis. Plus, you have concerns about nodes. There is a communication problem.
What scans have you had after dx of BC? I'll make a further comment after I see that.
HUGS sassy0 -
Chevy u have a camera in my house Ahem----Oh I don't want to hear about u Grandma and how u gre close to her--u were lucky she even talked to u. Remember when I told u gals I had one Grandma and she didn't like me and told me so. So she was mean, that's mean--when I'd be in a room it was why r u here--I'm with my mommy. All because I didn't speak Italian to her and I looked more like my mom. who she didn't like--my mom would talk Italian to her but didn't pay all this mighty attention to her and my dad said u don't speak Italian to anyone not even her. (He didn't care who she liked) Obviously I didn't see a lot of her It's funny now when we talk about it LOL--So who's grandma was worse? LOL
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That stupid priuspain starter. It's fine, but the pain party keeps going. It's like a bunch of drunks at a party that you can't get to leave, or they leave and come back for one more drink.
Chevy loved that from the husband "she's not coming here?!!!!".
Cami, HUGS, Always love when you talk about Joey. Did you ever notice your quote that I put in the topic box?
Wren That's a keeper. I love the Internet. Can't imagine the days of waiting for Readers Digest, Playboy, the funny papers to get our laughs. Now the world is open to use by plugging a few words into Google.
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Cammi! Damnit, I'm sorry! Some people are just born crabby! They have their own set ways.... For SOME reason, maybe she didn't like girls? When I was little, a neighbor gave my Brother a QUARTER, when he mowed the lawn.... But since I was a little girl, I only got a dime and I trimmed the edges with those grass shears! ! So see? He hated women.
I didn't like my Grandma .... for the longest time... but I don't think she had any use for us kids either... But it was after she sort of lost her mind... that her whole personality changed....! It's so hard to explain... She wasn't the same person.... but she was the person I grew to love, and could care for her.... so it almost doesn't matter that she turned her whole family away..... in the end, she had me.... Funny how I changed too!
Sas! So good to hear from you! You always make so much sense! I don't understand a lot of it, but I know what you are trying to say.....
You know Nettie.... Maybe make a copy of what Sassy wrote, and take it with you.... Or high-light some of your concerns, and ask them point blank, What the Hell! It IS your life.... your body.... If you are afraid, I would make sure those questions got answered.
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Sass I love you, lol it's so good when you help someone with your knowledge cuz i take notes lol
It's funny I now understand better just from readying what you said. I also had that Fear. A few months ago I started feeling pain in one knee and I began to be very scared. It was a different pain, it was as if my leg will no want to respond when trying to walk. So I ask at a walking clinic. Lol Ya I just went to a walking clinic and I ask for an ultrasound. Off course they have no clue about my history of bc. I just told the doctor there was some strange pain and I need to check it. Then I was in fear all week waiting for the result, sure enough I have a cist in my right knee about 1 cm but the doctor said it's very common and that there is nothing to do unless it becomes worse. Well I took a copy of the result and I showed to my family doctor during my last appointment. She said the same and gave me some cream. I bought a knee thing like a band at Walmart and wore it for a few days, didn't even use the cream and the pain went away. Off course I will watch it now but for some reason I am learning to let go of that fear. I am trying to ignore pain. Then I was told about the PMPS tread and found so much info regarding the burning freaking pain I still have in my chest, so now I again was able to stop the fear. Cuz i was worry it was worse. At some point I thought it was c coming back some how.
Anyway Sass thank you!!!
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U guys have been busy
Sassie how cool about phillie, tell her I was asking bout her plzz, miss her
Susan good luck with chemo
Yep u heard it right I stopped chemo about a month ago. I started with hormonals 5 years ago almost and when thry stopped working went 2 gemzar 2 1/2 years ago as u can see by my signature I have done many with major side effects. I basically have spent the last year in bed with starting having 2 good days to having no good days. My quality of life was horrible, n when I missed all of my grandson andrews baseball games an most of my granddaughters softball games I deccidrd I would rather have 3 months of a good life, then 6 months of bring in bed. Have 5 kids, 39,36,33 and the twins who live with me are 20 told them of mh decision n thry r not happy but thry r cool wiyh it. The dr understand also, , I havent really gotten flack about from people. How am I doing, fine, have diverticulitis and was recently in the hospital for a flare up and n now sprained my ankle, sometimes nauseous n pain is there but no more than there was
Cammie u are awesome. U know I adore u
Nettie that sucks dont u need something stronger
Enerva hello
Chevy..u r too funny, u r the best
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Sas u'r great and yes I did notice my little thought on top.
Chevy my Grandma liked my sister hahaha cuz her skin was more Italian than mine But I'm really glad u did get close to u'rs, now u have great memories, while I still laugh at mine.
Enerva I think fear and pain are exhausting, it fear that makes it harder to handle and so much more on u'r mind, once the fear goes u might of course still have the pain, but there's is a different feel about it--It's more like chit the pain is here, it's not OMG what's happening now. And worry and fear is there.
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yaaa you are so right Cami
Blondie, it's terrible what you are dealing with I send you lots of strength and hugs.
I took these today, during my pole walks
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Nettie sweetie while I'm waiting for the list , also add date done and if they were before or after BC dx. My goal here is to give you words to make the MO accountable for not responding to your concerns. I just need to know what or if anything has been done. Then the words will fit the scenario.
Blondie, I saw about the stopping treatment then splatted. Bless you Lovey. Have you decided about Hospice? They have so many services available. You deserve to have things easier.
CAMI, Enerva, Chevy :)hugs
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blondiex, sorry to read about your chemo journey. I totally get what u r saying. Feel the same way. I am sooooo good with however it ends up. Live it fully, no regrets and that's that. Took my hubby the longest to smile again...daughter was pretty ok quickly. I am lucky that chemo se's aren't all that bad for me. Don't know why, but it has bought me time...quality time. So wish that could be the case for you. I prob have a couple more yrs left..like I said, the chemos I tolerate...but I am chemo resistant too, so I don't get much time on them. I will decline radiation when the time comes. Wouldn't b able to talk...no comment ladies. Lol....and I would have a feeding tube..and be very very sick. Hope you are enjoying life to the fullest...you certainly seem like a very cool lady
Love you girls
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Enerva, Love you too! Did either doc give you a list of signs and symptoms(S/S's) to watch for with the cyst? This is where the medical establishment as a whole just fails. There is a faction that feels if you give a patient to much info they will suddenly develop all the S/S's. Instead of teaching the S/S's which allows the patient to become a partner in their own care. Look at the "Impressions" section of the imaging report. for a word before cyst i.e.Baker's. Also, look at where it is exactly located. If it's greek we can figure out something. Have you got a fax or scanner machine?
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SAS and Phyllie, Angels come in many forms; not all are human.
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Sass, my family doctor looked at the results and said it's no big deal. I need to tell you all something that happened to me which I haven't share with anybody here before.
Last year in Nov 2013. One of my brothers experienced pain in the left leg , he was sent to pt, the pain got worse. Then the doctors said with the Xr that it was a nerve which run from the hip down the leg. Not sure of the name in English. Then in January my younger brother seen him in such an agony told him he was going to go pick him up so he could go to my relatives city to get a second opinion. The new doctor when he saw the Xr, said he wanted an MRI. At that point I started to fear. Ever since I had bc when ever I hear MRI, ct scan, XR I just fear. We waited for results then we were told he had bone cancer metastatic, that a biopsy was needed but that the MRI suggested that. Well I went home to help my family we now had him and my sister with c. My brother past away last month
he suffered a lot of pain. Back home we had no access to morfin only oxicodine was given. It broke my heart to see him go through it.I am only telling you this, cuz i know exactly what you are going through when you mention bone cancer. I saw my poor brother how it affected him. He was healthy last year then gone within 6 months.
Now I fear for my sister and for all of you and even for me. So I try not to but it's so hard. I can't stop wondering what will my sister pathology report will say.
anyway, here is a picture of my results. Small bugger cist
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oh my gosh..cutest thing ever....eating dinner on screen porch...I live across from a park, and I can her cheerleaders practicing......they can't be more than 2nd grade !!!!! They sound sooooo cute
Enerva, sorry so many in your family. Sad about your brother...sending you hugs and prayers..I am sure it is still painful for you. Thanks for sharing
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Susan thanks, it all started with me and I am the youngest of 10 kids
So we have not clue which Gene we may have I tested negative for brca1/2 but I bet we carry some gene which there is not way to know yet.
No cancer in my father or mother history we are the first generation to have it.
Anyway I am ok, I now try to live day by day. And if I get back to making money I ll get a new bike lol
I will live la vida loca till I am able to.
I think what makes me strong is the lost, hard to explain it hurts so much yet it numb you. My sister told me she hates how she can not feel her breast now. She says she keep bumping into things and it doesn't hurt. I didn't tell her but I feel that way inside now. I mean in my heart as if I am a rock as if nothing can hurt me. That must be depression lol
Oh well I am ok for now ladies not to worry.
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Enerva u'r walks are beautiful, and I'm sure they must bring u peace,--I am so sorry for u'r brother this damn disease doesn't give a damn who it hits. Wow
My sister has bone mets and at first she got an infusion every month, then she got a shot every month, then a shot every 2 months now she gone to every 4 months. But mets is so different than Bone cancer. She's going on 7 yrs now never had chemo or rads, just this infusion and shots. And she's still working FT and just missed for her operation. ??? I don't get it but I'm glad so glad (we're very close) tht she's doing so well. She's doing better than me that b*tch.
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wow Cami that is so good. I mean that she is doing good not that she has it. U know what I mean. My brother was so full of life and he wanted to live, that is what was so hard, the situation in our country is very bad, medical asistence is just poor. Also it seams like it just hit him and then so fast took him away. Here is a picture of him with me when I was having chemo. In this pictures we had no idea he was sick. Everytime I see it I just go back to that moment. Life is just crazy
He was 48, his birthday is in August right after mine.
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Enerva I'm glad u shared his picture and his story. Thank you.
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Enerva--sorry about your brother and sister. But happy you got a diagnosis. Baker's cysts are common this is a link to Mayo-Clinic. MC always is a good place to start for definitions and info. Please, consider getting an orthopedist opinion about your nordic walking. You may be able to google it.You love your walking, but it is a repetitive motion, sadly that may aggravate a Baker's cyst. An orthopedist or sports medicine orthopedist or physical therapist might will give you the definitive scoop on this.
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Sas...I will give the rundown tomorrow, it's hard to type from my phone.
THANKS!!
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Thanks Chevyboy, good to remember, I am really trying to forgive and not be so impatient with her, for my sake as well as hers. She really knows how to push my buttons and I feel the stress rising every time, when I told her about my mastectomy and that I was concerned about the pain and long recovery, she said " you'll be fine, I have pain in my thumb all the time from arthritis". Recently when I told her I was really stressed out about my new diagnosis, she said, you! what about me? I have to learn to react differently. My MIL was a sweetheart and I always got along great with her,and she was always there for me, now with the dementia, she is angry with us, for not allowing her to go home. She would have been very supportive now, but not so much. Sorry ladies, talk about whining, I guess something broke loose and this vent was coming for a while. Thanks for listening, my prayers are with all of you as you go through your challenges, this isn't for sissies, Stephanie
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oh ok Sass I ll look into it. Thanks
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Oh 333 I'm sorry u'r mom is reacting oddly, I don't understand why she would even say what about her thumb, but I think we know people like this in our lives, and I believe they really think whatever u'r going thru theirs is worse, and I am sorry u don't have u'r MIL to help u. And u'r right not for sissies, cept I am LOL
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