STEAM ROOM FOR ANGER
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Bluebird and Lita please know you and your families will be thought of and will pray for you both
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Bluebird and Lisa - keeping you and your families in my prayers and sending you both warm healing hugs.
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OOOOHHHH NOOOOO I said that first sentence all wrong ---- I am so sorry!!!!!!! I was trying to say it has finally sunk in (to my brain) that I am a hospice patient and have not signed up. Please forgive that oversight. Especially all you with the brain mets. It was a real bad blooper.
Oh everyone, thank you so much. I am overwhelmed w the caring and messages on PM too. Woke up in a better mood, though I was really in a pretty good mood last night except for a few short short meltdowns. I am seeing this as a way of pushing me through to the right choice that I can handle with these sensitivities to drugs.
Today I am loving Christmas like always - if it snows we will drive out to see lights around the lakefront on homes and then at daytime to see the pretty woods and country side, watch for wildlife.. Camera. Binoculars. Saw so many otter at wildlife wetlands this week, they make it through the horrible winter by using ice holes and they come up and eat whatever they just found in water. Nibble ice holes open so they always have a way up. Kind of like us, right? Maintenance. Palliative.
Right Marijen - it was a lightbulb moment in a haze of sorrow. Thank you for helping to clarify that. You are appreciated.
Lita - glad to see you - you be as cranky as you feel, don't hide ever, we are here for you to be real. It takes a mere 10 mg of prednisone to make me edgy and want to do a wolf woman attack on Hubby. Then I get hives, heart acts up and breathing hyper and sso I don't take them. Cannot imagine having to take a motherload and tolerating them even if "normal" sensitive. As you can see now, I'm sorry I said it that way and will try to never do that again.... and there are no brain mets. Liver is hugely involved now in lobes 1, 7, 8. A lot of pain from cough / movement but not gnawing at me like growth. Lymph nodes masses that had once closed off my breathing are still not doing that. But don't know if there is cancer growth or still as clear as on Oct 2nd PET CT. Will know from CT on 27th.
Janet - that pic make me smile and coo. Oh a Newfie. Have always loved them. Saw my first when on vacation w sister in TN and we went to a mall of all places, top of escalator was pet store w a humongous black Newfie pup in the window. I had the cash and no sense and almost bought him. $600. Long long long ago. My sister who does not like any dogs except her own Springer when she had her, sis said "I am NOT riding around TN and back to IN with that dog in a sports car." I hope he found a good life. Yours looks more like our 3rd Benjamin Bear.....
omg he was so cute.
Shetland and Scared - The Abraxane was a good choice and I discussed the protocol as I knew it and differences, she seemed taken back though quite calm that I knew so much in the differences, what was done w issues and all. She did not disagree, the insurance will not cover ((( please someone tell me if I am wrong and she was misleading me))))) Insurance will not cover Abraxane which does not have solvent base - Taxol does have solvent base which is the usual reason for allergic reactions and reason for Benadryl and dexa. A patient has to first have two medically recorded allergies to the Taxol before the Abraxane will be paid for since it is so much more expensive. Now my question (to anyone who knows) and to her was ????what if the Taxol protocol that covers that patient if there are any allergies is impossible to give to the patient?????? I have those recorded, steroids and such. No she said, it has to be allergy response to Taxol.
So I said, so insurance would rather I die from the Taxol or attempting to help me with steroids.
Of course, they would, no more cancer treatment and scans to pay for. I really said that. I can be snarky and smile at same time. I will be digging into research soon and looking for that answer especially. Also what other chemos there are and other targeted drugs.
And she said I can't use other targeted drugs, no sense since Ibrance failed. Well, Dr. G was going to put me on Kisqali later on. Dr. D was thinking Verzenio or ? is in our back pocket. Those are cousins to Ibrance. If anyone knows, I'm kistening and researching. Hubby and I have a list to get done Wed and Friday, stuck to the computer and phone all day.
One day when I have more time will have to tell the story of the day Hubby lived through a not so well thought out remark about the Faslodex injection I just had. Saying here so I will remember.
So many stories to tell. I am off Xeloda and it is coming out of system and my brain is waking up and spirits lifting no matter the doctors being asses when they are. So I have a lot of typing out stories and cleaning up my story blogs. Maybe even get off the garage shelf some books I started and never published. There are 4 more, only 2 written and published, I do all of that work on own and loved every minute. So maybe the books.
And some paintings to finish and some of winter I wanted to do someday. If shoulder pain is allowing, I can now paint. I feel so much better being off Xeloda. I was drugged and down for 8 months. Ibrance FEMARAugh left me bad the 5 mo before that.
So this is what life feels like? I forgot.
And yes, I am still going to get out my garden plans and seed catalogs. Wasn't going to didn't feel like it. But I am now. January. Right in there with figuring out the budget for Hubby should I die and he get the minimal life insurance on me there are bills he will want to pay off. And I wonder if it is time to cancel his life insurance since I may never need it. Key word is may*** so I suppose not just yet. And finding the right doctor for me. There is a Dr. Lyden in South Bend area, he is a naturopathic chiropractor but I don't have the cash, have to go through insurance.
Liver better, touchy still when I cough or sneeze or even little burps oh man. So learning to cough different. I think it is going to go back to normal given no friction, just rest. Wrapping gifts is easy, using bags when I can get up and go back over there.
Only way Hubby will leave me alone is if I promise not to walk until he returns. I have to stay in my "playpen."
He's home from store so I can walk to bathroom now. Going to go.
Aw, he brought back US grain-free peanut butter and cheddar dog cookies in box for puppy gift for Christmas.
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Bluebird, your onc is supposed to FIGHT to get you the Abraxane! She needs to do her best to put it through on the fast track, and appeal if necessary, also on the fast track. She needs to get off her a** and help you. Aaaargh this is not right. You can't take Taxol because you have known risks with the pre-meds; therefore you should have Abraxane. (Beating head against wall.) Sigh.
Somewhere there is a thread on how you can submit your own appeal to insurance. Anyone know where it is?
Bluebird, maybe you should create a thread about this so people who have successfully gotten through a problem like this will see it and advise you.
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Bluebird,
Allergies to steroids specifically prednisolone are not unheard of, but they are rare.
They are also " complex, difficult" - another sigh - in the sense that one uses steroids to treat allergic reactions, so a reaction creates the predicament of moving from antihistamines to epinephrine for anaphylaxis. But enough on that.
I believe your MO is, for time or other reasons???... not pushing this for you - and she may have it WRONG.
Ask to see an immunologist and try to get them to appeal to insurance on your behalf.
Really one has palpitations, stomach churning, shortness of breath and a neck histamine scratch rash only at the thought of entering an IV chemo room - one wouldn't have to do much or get much of anything to get two episodes documented.
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Bluebird - I SECOND everything Shetland said... Is there any chance you can look for another oncologist? (To help push for the Abraxane). (I don't know....just thought I'd throw that out there)...
Sorry Everyone - I need to vent:
I found myself crying in the bathroom at a close family member's x-mas eve party...
First of all, my DH was a bit of a FH, on the way over there. Every holiday - he gets stressed out over NOTHING and turns into an *ss. We were late leaving the house and he blamed me for it. Even though, DD and I were ready 30 minutes BEFORE him and WAITING for HIM.
Anyway....a while back, when I was first diagnosed with Stage III, this close family member told me that one of her good friend's from college - had Stage IIIC - and was 15 years out from diagnosis and doing very well. I hung onto to that - and whenever I felt scared - I thought of her and that gave me hope.
I thought of this person - as sort of a life line - as it sounded like her situation was a lot like my situation. And, I looked forward to shaking her hand and asking her - how - she emotionally got through all of those years. (as I've been pretty down lately).
Well - she told me - that hers - was "found quite early". Not stage III - at all. Not that I wish Stage III on anyone (and, I know how bad this sounds). But - I thought I could turn to her for hope... Now I don't have her story (which was never true in the first place) - to give me hope....
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Don't like other people's stories anyway Scared. No one is the same no matter what stage you are at the start. My "tiny" cancer turned out to be over 2 cm and my new onco thought I should have had more treatment before reconstruction that old one did. Interrogated me even why it was done that way. How do I know? It was what they decided I needed at the time? Tissue so dense they could not even see the whole tumor to start with. As I call it, dense means stupid boobs!!! Does anyone else hate all the unrealistic victoria secret models with their little perky selves?
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Colorado~I think I just threw up in my mouth a little. YES!!!!!!! It's annoying and teaching young women that that is what a normal body should look like ?? No pressure. Give them each a cheesesteak with xtra cheese a few times a week. Make them more like real women!!! Ridiculous honestly!! ~M~
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I am trying to push Dr Turd out of my head and move on.
Though I actually called about hospice and nursing facility in the country near us while Hubby was out of house. Am researching more on treatment options now but wanted to get a little more clear, know I have to get on disability / medicare to afford this but want it to be in place before there is an emergency and no options at all except a hospital room.
As we write, the process is in motion for my DNP to refer me to the next oncologist. One my DSIL has had for bc for 5 yrs. Her words, brutally honest and she asked him to always be, kind thorough, intelligent, easy to discuss concerns and options with him. Staff diligent, sit right by you during infusions at first, never leave your side though room is full of other staff. All good measures. This onc rescued her from poor and unnecessary tx that caused deep burns. It's a long drive in another direction but from here there is no where but the long drives.
ShetlandPony - You are so right. This is what they need to do, fight for the patients to get the best care, first do no harm. I have done appeals for non-paid labs etc. I think I can do it. But the problem is the oncologist will have all the info and he SHOULD do it instead of me weaving around in the middle wasting my time and life. Thank you Scared, too. Researching today.
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Scared67, I get it. We look for any tether in this storm, anything solid to anchor ourselves too, to hang hope off of. And for you it was that story of that woman in the same shoes and how well she was doing. Some small comfort was gained from that. And in the last minute your safe harbour was revealed to NOT be a safe harbour after all and you were cast adrift again, tossing on this sea of emotions and medical treatments and side effects and knowing, tick, tick, tick, that your days are numbered. Of course all of our days are numbered but most people get to walk around in a happy state of drooling oblivion where the end of their life is NOT something they've been introduced to. Oh, happy ignorance that I used to know! So I completely understand your feeling of defeat and despair.
I hear the chorus of voices chiming in to say "we could all get hit by a bus at any time" to which I respond SHUT UP! You there, bus predictor, come join me here where I am standing, no, LAYING, here in the bus lane! You are on the sidewalk where buses rarely venture. I am here in the bus lane, flat on my back, I have been run over, see the tires tracks? And it looks like the damn driver has put it in reverse and is heading back this way. I am attempting to flop out of his target range while you there, on the sidewalk, yell that we could all get hit at any time. Why don't you go pound sand and leave me alone to battle it out here on the pavement? If you can offer no help, then STFU!
I am mad that even the bits of hope I feel, the brief moments when dread lifts ever so briefly and I make a plan for the future it is immediately followed by the words or thought 'if I'm not dead by then'. Other women have voiced the same, wondering if this will be their last Christmas. We should pay attention to those moments in our lives that might be last moments, we really should. But the reminder to do so comes at too high a price. I am struggling to find the joy in this. I know it's there. I just have to dig through a ton of shit to find it.
Scared67, I also find more and more people who talk about cancer know NOTHING about the disease. They do not understand stage or grade or the impact of size of tumour or how or why one treatment is taken over another. I used to be the same. Cancer was a lump in your boob. They cut it out, chemoed you, radiated you, end of story. I was ignorant. Most people are. It takes about 5 seconds of talking with someone now to sus out if they have a clue or are just flapping their lips. I used to try and educate the un-knowing. Now, I don't have time. Sorry. Take your stupid talk and move along. I have better things to think about. Like dahlias, and when I might die. I have a lot on my mind.
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Runor - Thank-you for putting into words what I feel, but don't know how to *say*. It felt good to read your post...you totally nailed it!! Yes - it completely feels that way - like a raft of hope in a turbulent ocean was taken from me...right on x-mas eve!
When I came out of the bathroom - I sat in the living room, watched TV and petted their cat (which was exactly what I needed!)
And when I asked the family member about why she told me her friend was stage 3C, when she was more like stage zero or stage one, she just kind of shrugged her shoulders like it wasn't any big deal... But, it was important to me, because I had believed that was a successful stage III story, but it wasn't one at all...
What also hurts, is that this family member knew this was important to me, because there aren't very many of us stage III'ers out there...
BCInColorado - I can't believe you were interrogated like that...that is unreal. We are not doctors!!! How dare that Dr. speak to you like that!!
Bluebird and Lita - Thinking of you...
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Im no worse, nothing bad going ( more than usual) but for some reason I feel this has been my last Christmas
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Beatmom- thinking of you, prayers for you and all the ladies here.
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Beatmom: Being St IV myself, I don't think ANY of us really knows how much time we have.
I actually didn't expect to be here for THIS Christmas after I was Dx'd with more than 20 brain mets in Sept, but here I am.
I kind of have a feeling this might be my last Christmas (a relatively DECENT one...), too. But like I said, who knows?
I could list several women on these boards who have battled on for years and who are in worse shape than I'm in (ascites, in wheelchairs, major lung problems), and they're still here.
Sigh....we're all gonna go when we're gonna go.
Sorry I can't be a little more positive.
L
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I agree Lita! We all are going to go when we are going to go! I just can do without the suffering part, for all of us. It shouldn't be that way, I don't want to slowly watch myself deteriorate, or the kids watch either. This cancer shit just sucks! I hate it, it attacks good people that don't deserve any of this. I was out at the store this week and walked past someone with my daughter, the woman said to my daughter "tell your mom I said hello" and I was standing right next to her. She just didn't recognize me! It almost broke my heart. I had to literally hold in my tears. It was shattering. This was someone who lived in my neighborhood! Someone who should know me! Shattered me again and again and again. My life as I knew it is forever over. And I am damned mad! ~M~
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Micmel, that hurts my heart just to hear that story. I’m sorry that happened to you.
Thinking of you, Lita, Bluebird and everyone else struggling here.
Cancer really does suck.
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The referral to the next oncologist was done this morning. Intake lady at new MO said he is looking at this late today and she WILL call us tomorrow about when he can get me in. My DNP had all files sent to him that she had. I have more here. Boop, just a call and all done. That is the way it is supposed to happen. Last onc took 3 weeks to get me in while I was in rough shape and not on a tx. This one looking now. And this one is dealing w short weeks during holiday season.
Thought I woke up in a decent mood but when I started speaking it was clear I was a wolfwoman, attitude adjustment needed, spitting, snarling, bitching. Poor Hubby. He takes it well, and all I have to do is say Honey when I speak and he gets over it. But my dog. He doesn't like my new voice anyway. He doesn't like when I talk unless I am petting him. If I yell or bitch he just gets up and leaves the room. I call Puppy, come back here, it's okay. And he is like nope. nope. nope.
Micmel, have you had recent photos taken? I haven't as I just don't look healthy. Used to have rosy skin and my eyes did not look so tired and dull. So I know, I am not 'me' either. The new look is about 5% getting older and 95% cancer / treatments.
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Bluebird DE - Hey, wishing you the best of luck for tomorrow... Praying for you and sending hugs and together with you hoping all goes amazingly well with this new onc. You sure deserve it!!!!
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Oh Michmel that it so sad. Now being anti-social and married to someone even more so most of my neighbors would not have a clue anyway what I look like most of the time even before cancer. Sad they knew your daughter and not you though.
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Micmel, I am so very sorry that happened to you. Really it is pretty inexcusable that the person did not take the effort to look into your eyes and see it was you. Yes, our lives are forever changed but we are still here today
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Micmel...that sucks.
A few months ago, a kid from DD's gym, asked her (right in front of me) - if I was her mom or her Grandma. It was another WTF moment in my life...
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Micmel, I can only imagine the feeling. I would have cried too.
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I decided I would combat that issue from that XNeighbor and try to straighten my hair. My hair used to be half way down my back and long and chestnut brown. It was my calling card and people knew me because of my hair. I couldn't go out in public without someone commenting on my hair. I was like Linus with his blanket!! I cried and grieved that hair more than my actual boob, My DH loved me no matter what!! But it was my insides, my hair, my person that was lost, destroyed and literally my breast thrown away like trash. Nothing I could control. I didn't have a say, all I could do was listen and shove down my tears because my worst fear in life was happening. I watch normal healthy people with their breasts in tact! I don't know them, but inside I despise them because they are still whole and I am not anymore. Who do I blame, who do I yell at. Who do I gut punch?
So I tookout my flat iron. Because I knew I had some length back! It had to be at least shoulder length and it was. And I feel a little better now. It's growing. And I look more like myself than I have in years. So screw you neighbor. You got fat anyway!! ❣️❣️❣️❣️❣️ ~M~
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after my decision to go on std, you’d think that the most recent happening wouldn’t have bothered me... but it did. No one knew my decision, outside of my family. So yesterday a friend asked me to see if our infusion center was hiring. As I was looking, I came across a posting for MY job. My actual, what I’m doing right now, job. Posted on 12/14. Talk about a punch to the gut. I literally got sick and left. And then I chose to stay home today. I know I was thinking of leaving... but on my own terms! WTH???
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Ha! Doctors have code words for patients!
The secret codes doctors use to INSULT their patients right in front of them - and why the lingo harms your health care
- Doctors revealed some of the acronyms and made-up medical terminology medical professionals use to describe patients to one another
- The phrases range from darkly funny, to rude, to downright racist
- Doctors involved in discrimination research say that these are an institutionalized part of doctors poor opinion of patients
- Research has shown that discrimination in health care leads to worse outcomes for patients
By NATALIE RAHHAL FOR DAILYMAIL.COM
PUBLISHED: 11:23 EST, 29 December 2017 | UPDATED: 19:15 EST, 29 December 2017
Medical jargon is pretty impossible for most patients to follow, but some of the terms you hear your doctor use may just be insulting industry jargon.
Over decades, doctors have ad-libbed a whole vocabulary to encode their frustrations with problem patients, communicate grim status updates, or even gossip about children.
In medicine, this slang is more than harmless insider-jargon: studies have shown that doctors' attitudes and discrimination toward patients can have a real affect on the treatment they receive and how well they recover.
Medical schools have begun to recruit more diverse students in the hopes of changing the field's culture, but several young doctors who wished to remain anonymous told Daily Mail Online that discriminatory terms are still common.
But discrimination is institutionalized and dangerous in medicine, according to Dr Peter Muennig and Dr Alex Green of Harvard University and Massachusetts General Hospital, and it's worth knowing some of these terms that doctors may use to mask the severity of a situation or downright insult you (warning: some of these are offensive).
GOMER
This 'classic' term stands for 'get [them] out of my emergency room.' It has been used in hospitals for decades and is familiar to just about every doctor working, Dr Muennig says.
The acronym is a sort of catch-all term for any of the kinds of patients doctors don't want to deal with.
'There's a certain level of discrimination against the chronically ill, and that's where GOMER comes from,' says Dr Muennig.
In a recent interview with Daily Mail Online, he also said that this term is often used particularly to describe people who physicians suspect are hunting for pain medication.
Frequent fliers
Patients may return to the hospital week after week - or even day after day - for a variety of legitimate or illegitimate reasons, earning them the title 'frequent fliers,' but certainly no points from doctors.
Chronically ill patients with conditions like diabetes must make regular appointments for dialysis.
Other patients become common faces in emergency rooms and clinics because of their hypochondriacs tendencies, constantly sure that they are gravely ill.
Still other patients may just be looking for a drug fix, coming in with complaints of chronic pain, or in hopes that the physicians on shift will be more willing to prescribe than yesterday's were.
'It's most often used to talk about people with severe diseases like diabetes, or renal failure and diabetes,' says Dr Muennig.
FLK
Doctors use this cruel acronym for 'funny looking kid' to describe 'those babies who are "syndromic" or [we can tell] something is wrong with them based on how they look,' a Chicago doctor told Daily Mail Online.
Children born with any of the three trisomies - genetic mutations that cause there to be an extra copy or partial copy of a chromosome - often have distinct appearances.
These disorders include Down syndrome, which is typified by a flattened face, smaller head and ears than normal and upward slanting eyes.
Doctors also use the FLK to describe babies that don't have a clear diagnosis, but whose 'abnormal' appearance suggests that there may be something wrong with them.
Crumping
Not to be confused with the dance style, doctors use 'crumping' when they have a patient that is 'crashing, but not aggressively,' the Chicago doctor told Daily Mail Online.
The phrase is synonymous to 'circling the drain.' Rather than their organs suddenly failing - or crashing - these patients are deteriorating quickly, and often don't have much chance for survival.
'I don't think it's necessarily harmful to say "crumping" or "frequent flier,"' a New York-based doctor said, 'but I'm very careful as a physician to not use those words in earshot of a family, that would be strongly unprofessional.'
Total body dolores
Like many legitimate medical terms, this one is derived directly from Latin. 'Dolores' translates to pain so this 'literally means total body pain,' the doctor says.
The phrase is most often used between doctors, to describe a patient, as in, 'I have a total body dolores in room 109.'
He says he's seen this term used commonly to describe Latino patients in particularly. 'These patients can be very nervous,' he says, in part because English is often their second language, making the hospital and medical-speak even more frightening, 'and their anxiety manifests physically.'
Slang is used 'commonly with people of color, people using drugs,' he says. More common phrases like '"crack head" are commonly heard on the ward too.'
Although 'doloroes' means pain in Latin, a rather medical language, it means the same thing in Spanish, as well as being a woman' name. This all adds up to maximize confusion for patients.
Status dramaticus
A patient earns the title 'status dramaticus' when they are a '10/10 [for pain] always, although they look fine,' the Chicago doctor says.
'This is someone that wails shrieks, howls so loudly you can hear them from the hallways. Everything hurts and they make sure you know about it,' he says.
The problem with doctors using terms like status dramaticus, says Dr Alex Green, 'is that they're dealing with people who are sick, physically and sometimes mentally and these [dismissals] can be more directly harmful.'
WWWS
The acronym for 'wealthy white woman syndrom ' is 'actually bad because it's a term that is used when you're frustrated at specific patients and dismissing their symptoms,' says Dr Lisa Wang, a psychiatry resident in New York.
Research has documented that physicians are more likely to take women's pain less seriously than they would a man's. There is a widely held belief - though studies turn up mixed results - that women's bodies are designed for childbirth and their pain thresholds are higher.
A 2008 study from the National Institutes of Health also found that women wait 16 minutes longer to be seen in an emergency room than men do.
'As medical providers, on an unspoken level, I think [using these terms] is a coping mechanism, to make light of really difficult situations,' Dr Wang says.
HHS and Aye-aye-itis
Discrimination against people of color and those for whom English is a second language is rampant, as evidenced by the terms 'hysterical Hispanic syndrome' and aye-aye-itis.
'I hear "aye-aye-itis" used for a Hispanic patient who has many somatic complaints, none of which are related to their surgery or main problem, usually accompanied by "aye, aye,"' the Chicago doctor says.
'Language barriers are a big discriminatory factor,' says Dr Green.
'There's an attitude of "oh, another patient that doesn't speak English, why don't they learn, it makes our lives so difficult,' says Dr Green, who has worked on initiatives to educate hospitals on language barriers and introduce interpreters.
'I roll my eyes every time I hear that [kind of term]' says a New York doctor. 'I call it out because it gets at the rampant cynicism to the job.'
In one Harvard study, 20 percent of a group of 8,000 Latino people reported experiencing discrimination at a health care facility or clinic.
Slugging
'A slug is someone who is reluctant to get up out of bed after surgery,' says the Chicago doctor.
'They tend to be slow, in pain, and want to stay "one more day longer, please,"' he says.
On one hand, 'poor effort,' as he calls it, can have a negative impact on the quality and timeline for recovery, but there is a darker side to this tendency too.
A hospital bed might be the safest and most certain place some patients can stay, especially for those who are not financially secure or may be struggling with addiction.
'When you have patients showing up drunk every single night, always overdosing, not taking their blood pressure medications and coming in because of it, it becomes easy to blame patients, though I don't think you should,' says one New York doctor.
Dr Green says that 'a lot of it derives from [doctors'] systemic frustrations with the medical system back-firing back onto patients.'
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Runor - you said everything I - and all of us - feel. Thank you.
Beatmon, Bluebird, Micmel, Lita - praying for you all. I want you to have many more Christmases.
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Wrote a post for this thread yesterday and lost it due to snow and connection.
Marijen - I read a version of this article some time back. Was appalling, the one I read was how it carries in our medical records and causes us to too often not get the medical assistance we need due to predisposed medical positions based on other medical professionals calling out names. and judgements, often even based on their own wrongful actions and not liking to be confronted by the patient. I think I have a few names in my file to. Especially after the letter I wrote to dr turd. .
Swess - once you get through your shock, are you going to discuss this with your management. Perhaps they are preparing for orientation or just gathering prospects for a handy file of choices. Man, I would be a bit freaked out too and sick to stomach angry.
Well, the hospice exploration is a reality. I say this after the fired onc brought it up most indelicately and indirectly. I am angry that he took up SEVEN WEEKS of my limited life span by wasting my time, not acknowledging a transfer request and trying to get me on treatments that could well kill me sooner than the cancer. Very angry with this poor excuse of a doctor. At the same time, I was in such pause on what he wanted me to take that I ended up with time to heal more.
The new onc I really like and am sticking with.... he has said there are a lot of choices once I am stronger, but also he said that right now is a good time to explore hospice options. He is managing pain for me and said my qol will improve and thus my stamina, opening doors for further tx should I want to go there, but for now only aromasin and getting strong again.
I am not angry. Just knew it all this time anyway. Don't like to hear it is all. Making preparations here and there for that and gathering of friends should I die, want all that to be done. Get Hubby organized so he won't be lost in the fallout, hopefully no fallout if I can help it. Just grieving and acceptance, I want all else to be ready for family to just open a notebook and follow the course.
That said, I feel so much better after 5 weeks off Xeloda, it was slowly killing me but I also felt like it was saving my life too. Quite the conundrum, isn't it, that we all face with treatments to keep going. Right now I feel like I am living again. So hospice feels far far away.
Today I digest SS Medicare that Hubby is getting on soon. Step by step. Next, my stuff again. And gardening catalogs will be coming in the mail in a week. Gardening makes me stronger.
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I found this site and this forum item and I am more than ready to blow off some steam. This past Thursday was the second anniversary of my cancer diagnosis. Got my diagnosis of breast cancer on December 28, 2015 with 4 tumors. Two were very aggressive, one was in situ,, and one was benign. A week later I had a double mastectomy. And I felt great and was getting stronger every day.
Life was good. And then my new onc decided that I needed chemo. One year later I am left with horrible side effects, almost no hair, no eyebrows, hair on my chin that grows faster than I can remove it, pain my joints so bad that I went from a cane to a walker, to a wheelchair,, and a handicap parking permit. Lymhodema, horrible sores on my body, brittle and breaking teeth, extra weight, and poor vision. I tested positive for Lupus. But wait, there's more.
I have had two uterine/endometrial biopsies in the last five months both not cancer but cells were growing fast. Probably due to the Tamoxifen that my onc prescribed. The body sores that started a year ago turned out to be MRSA!!!!!. My onc thought that the "rash" was just due to my medications. Now I am on a heavy duty antibiotics that make me feel like I have the flu. The "rash" is numerous open, leaking lesions which means that I have to wear clothes to cover up and contain the liquids. I now have to wear Depends. My first onc got promoted to a director of five cancer centers. WTF! If you can't do the job, you get promoted????? $hit floats to the top.
Everyone used to tell me that I was beautiful. I was 65 years old with no wrinkles and many strangers thought that I was in my late 30s. Not now. I limp and I'm usually bent over because of the pain. Can't get my teeth back to normal because the dentist doesn't want to work on them while I have MRSA. My sex life is gone. Even with all this stuff, the hardest thing I've had to deal with is watching my husband's love go away. He begged me to do the chemo treatments and he went to every single infusion with me. Doted on me and was so proud of how I had dealt with all of this. He now is frustrated because I can't keep up with the house andButguess that he thought that after my treatments finished, our lives would get back to normal. That didn't happen. I thought that maybe he is disappointed because I haven't died after my expiration date. I told him that I am only staying with him because I need the medical insurance that supplements my Medicare. So in turn he gives me a new car wrapped in a huge red bow but I couldn't even go with him to pick it up because I have had heavy abdominal bleeding and cramping since Christmas day. My Gyn can't do the hysterectomy until my MRSA is no longer active. He can't give hormones to stop the bleeding because I am ER plus and he needs to confer with my new onc who won't be back until next week. So, I'm going to be celebrating the new year wearing Depends and tampons and a wig. I told my DH to just drop me off at the ER and speed away. I'm heavily insured and they can run tests on me till they can't find anything else to test. And start me on stronger antibiotics to kill the MRSA.
It probably sounds like I'm just whining and feeling sorry for myself. I'm not. I have wanted to fight this from the minute I got my diagnosis and I still am fighting. But I've had a few doctors that seemed to stop doing anything once they stopped receiving the big bucks for the treatments. My physicians and surgeons at the Breast Center are awesome. They saved my life and then gave my life back to me. I can't say the same about what happened once I started the treatments that were supposed to help me keep that quality of life. I know that my new onc really cares and is dedicated to getting me back on my feet. But I'm now very weak and tired and can feel that this will be my last Christmas and my last New Year. I am so angry but it feels so good to get this off my chest. To be able to scream out my frustration.....
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macruising- you came to the right place! I'm very sorry that things have been so difficult for you, it sounds awful. And I don't think there's many here who dont understand feeling sorry for ourselves at least once in a while. I think you will find lots of support on this site, it has made many of my struggles easier just knowing I could come and have a support group at all times of the day and night. I hope things get better for you. I expect the responses will be slow today and tomorrow as people are doing their holiday, so don’t be discouraged, we are here
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Macruising - I read your story. It compels me to say this is so very much like my SIL's story. We had bc at near the same time. She chose your path, I chose a different one. She went through pretty much everything you have listed. And SEs from radiation plus a terrible open burn. Some of us have an easier course for whatever reason. What w can give one another is empathy and a place to talk it out. Like cpeachymom said, this thread may be quiet for a few days. There are other threads where there might be parties and confetti flying.
I've been through a few oncologists that had me wailing at the wind. With all the trials and errors and wasted lifetime hours used in finding realistic medical treatment for lupus, thyroid issues and breast cancer gone to liver, I have spent several months on this thread pounding out the keys. like this......
The very first oncologist that I ran away from really got to me. He had me all lined up for the full course including a double mastectomy, radical on the right side. At the appt after my second biopsies (already had surgery) he outlined it all. I was sitting across from him in a rather sizeable exam room. Honest ---- I could see me flying across the room, heavy Birkenstock sandal first and kicking him in the face. The vision was so real I thought I had done it. Shocked, I looked at Hubby and said, we have to go. And so we did.
The last one that gave me a reaction was already director of oncology and a bc specialist. He had nothing he could do for me that I could tolerate but he was proposing it anyway. He didn't think the other tx would work much at all, but he said that was his second choice. And he told me to talk to hospice now.
Just got over all that, no time to fight it out, found the next oncologist and am quite content.
I do not know how the anger dissolved except that I kept talking. Conversations would keep me up at night, wake me in th morning, what could I have done, said, thought, chosen differently. It is just gone right now. So keep talking.
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