STEAM ROOM FOR ANGER
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Oops Diana, I mixed up your dog with bluebirds. Some dogs have great empathy and you and thunder are lucky to have each other.
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Going into hospital tomorrow. Need to get ascites drained - put on 3kg in 4 days. I look like an anorexic who has swallowed a basketball
Also getting tested for peritoneal cancer and to see if the ascites is malignant. My latest blood test is bloody awful.I don't like hospital, too many sick people and germs.
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Freya, so sorry to hear this. Will be thinking about you & sending prayers that your news is good.
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Freya..... prayers and hugs!! Hope it’s good news! ❤️
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Thanks KB, JKL and Paulette. You're very kind.
Pulled off the chemo I only started last week, nothing is looking good. I'm just hoping getting it drained will perk me up a bit. So exhausted.
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Freya~sending you thoughts of healing and compassion. I am so disheartened to think of you going through all of this. You're a strong special lady and I hope you know you are cared for very much here. Sending hugs and caring affection your way. ~M~
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Thanks Mel. I just want to feel well enough for one last trip to the beach with DH. It is spring, the days are lovely, the nights are cool enough to sleep (for those who can sleep lol).
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Freya~ I want that for you too! You deserve to be happy. I am sending good thoughts your way. I am not overly religious, but I want you to know you are in my thoughts and I am sending whatever strength I can muster! 💕~M~
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Freya- warm hug and heartfelt prayers for you! ❤️
Chelle
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Thanks Chelle. I've given up on trying to sleep, nearly 5.30am, may as well stay awake now. DH came in earlier and asked if I was thinking about the hospital, it never crossed my mind.
I have the attention span of a gnat when I can't sleep - the idea of my energy rippling across the cosmos after I die is kind of cool - I wonder if I could be a ghost for a bit first, there are a few people I'd like to haunt - bananas, I need to buy bananas - don't forget to pack toothbrush - remind DH to fill up the wombats water bowl before we go etc etc.
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Sending powerful, healing thoughts your way, Freya.
The late Stephanie and the late Rosevalley lived with ascites for quite a long time. It can be managed, so don't write yourself off just yet (unless you're just tired of it all and want to throw in the towel for yourself). I know Rosevalley kept at it because of her children, whereas Stephanie's body just hung on a long time.
Wishing all the best for you, my dear.
L
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Freya - we're all in your pocket. Glad they are checking for cancer in the fluid. From scan seems no fluid pockets in me except the ass. right flank as they phrased it, hahaha. But abdomen and such, all subcutaneous fluid in the cells. So I am on 40 mg lasix w potassium to help. Plus nibbling a bit of prednisone 1x day to help w lung pneumonitis, watching for the hives and heart pass. Was crawling and in wheelchair last two days. I almost went into hospital Monday afternoon. But the oncologist had me given fluids IV and I felt somewhat fresh like there was actually oxygen in my body for once. So started Gatorade for electrolytes. The pneumonitis.... it's been since May when started. But never showed. I need to get healed of this. YOUR LIST: Maybe use phone to video your list while you fly through the cosmos in your imagination. Reminds me, the scan was TIGHT when head is so close to the tube roof for a brain scan. ugh. could not open my eyes once. I got through the brain / body PET CT Monday only by pretending I was a turkey vulture soaring the sky. Love them, beautiful, graceful and gentle villagers of the forest floor, family oriented, never kill anything. At least not here in IN where roadkill amasses.
Dianarose - hold that thought, took 40 mg lasix, right back!!! ok ... thanks for reading it all, it is exhausting, especially to the tennis ball, namely me...... good info you gave on what I think is a plural effusion or?? In July I called nurse navigator and told her I needed an xray to check, I had pneumonia feeling and so they ordered it. All clear. That was when the inflammation under my skin was around waist on both sides and spread up my back. Lasted about 11th to 22nd, very painful. Then stopped. Lupus? Rad SEs? Don't know, don't care, just make it stop. And no one did. So here I am.
Dianarose - cute puppy. That is his blue bone and he is proud of it! DAnny Boy will not do toys or bones. He will not play or fetch. But he has other stuff that makes him cool.
Magiclight - Yes, mine is a Newfoundland (Newfie) and he is on my bucket list - I say I will not die before he does, that is final. He loves snow more than anything else, except us of course.
Today I have no anger, only acceptance and working out my plan. And all the doctors who did not help or hindered or hurt are in my file entitled "Asshums" so I can get to that later if I choose.
There is no active disease evident on the brain / body PET CT
BUT there is a doubling in size/uptake of existing liver lesion plus another beside it now. Am unraveling how this can happen while on Xeloda, the go-to for liver mets. And my best tx option. Posting tha into 3 forums who have members who have been there, hoping for help w insight and the plan.
Later all.
Me with my BearBear about 22 yrs ago.
and BearBear - on cool dog 180# of love.
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Blue- your dog is so cute. They love us no matter what. If only people would be like dogs
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Bluebird...thanks for sharing our Newfie loves.
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Hello Everyone,
I am new to this conversation, but I am glad I found it. I don't know where to start other than the desire to spew profanity at the top of my lungs. I usually keep it together... I mean.. what other choice do you have when you are diagnosed at 27 years old? What choice do you have when you are a wife and a mother of a toddler? I try to smile and be an inspiration to those around me and, for a while, I was successful. I went through surgery, chemo, radiation, and now I have hit a wall. Treatment is slowing down and it has really hit me. I am so mad. I am so outraged. I am so overwhelmed by the sheer fear that accompanies me wherever I go. To top it off.... all the well-wishers and facebook posters that once advertised their support for me no longer see what I call the "glamour" of having a friend with cancer. People want to pretend like they care, so they can take a bite of the tragedy... have a piece of my pain. Sure... thanks for purchasing an overpriced sweater with a pink ribbon... that means so much to me.... WHATEVER!!! This isn't cute, pink, and fluffy... it is undignified and cruel. I am afraid to make plans for the future because I cannot paint a picture that I may not be in. HOW DOES ANYONE LIVE LIKE THIS???!!!
There are several women in my age group that have gone through treatment with me. I love these women... they are all warriors in my eyes. They are all wives, they are all mothers... this isn't how young women should start their lives. One of them is dying. She was going through her treatment like the rest of us... then, her lungs filled and they found tumors. Her prognosis changed in less than 24 hours. How can this happen? She has two babies at home... how on this earth can a beautiful woman, in the very infancy of her adult life, be planning hospice care? I am so mad... and I am so scared... and I don't understand how something so evil is ravaging so many people. How do I act brave now? How do I go home and not cry myself to sleep out of sheer fear of what may happen to me in a mere 24 hours? I don't want to make videos for my child as if I am dying... I don't want to have to fill out birthday cards for the years that I will be missing. I don't know if God has decided that I deserve this... and who knows... I might. But, my son doesn't deserve that. Her 5 month old baby doesn't deserve it.
I am sorry if this seems depressing. I am just so tired on the inside from all of this. I am tired of being afraid. I am tired of being treated like I am dying. I am tired of watching others have to go through this. I am tired of stupid pink ribbons and tacky "save the ta-tas" shirts, and stupid epitaphs printed on peoples back wind-shields, and every other stupid reminder of something I already struggle without constant public reminders. What do I do?
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Dear barbiej, Can you help us out by telling us what your diagnosis is? It is impossible to respond unless we have at least a little information. Best wishes!
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There is an expression on BCO offered up by one of our own. Who was that Sas? "Fuktober" I cannot find the thread or posts anywhere. But Barb, that is what hits my brain when I see all the perky pink stuff flying by. It helps to just let it roll. They do not understand at all. Someone close to me got me a pink pen a few years ago. Um, no. When I receive invites to survivors dinners, um, no, and I respond why I do not choose to partake. Perhaps it sinks in to those receiving the response, perhaps not.
Someone on this thread said 'reality with purpose, not perky positivity' or something like that. That's how it really needs to be. You know that, it is written all through your cries for understanding.
What you have to do is give yourself time each day to be as unhappy as you want to be. 10 min? 20 min? Beat a gong. Run until you cannot. Paint an ugly picture. Whatever works for you. Throw yourself a pity party regularly. Then go home so to speak. Go out there and live.
And yes, we have to go to all these appts and tx and scans and research for our life sake. It takes time. Do it quick.
Then live your day. Support your sisters who are going through this, be a team member, yes. But also take the time to live your life to the fullest. Make the memories. Cards, if you like too, won't take that long. Videos and photos and letters. They are the path we leave behind saved for the future.
It doesn't matter much what stage or type - they can all bite us when we don't see it coming, even 10 yrs out. And it doesn't matter what we do to get through as far as tx, for some it works and for others it does not.
Yes - we are lost in a private hell and cannot get out. But within this hell is a team of women and men, your family, your life. So it is not all so bad.
But when it is bad like for you when you wrote - don't hold back and don't bother to apologize. Because Barb, we get it and we cry with you.
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So true BB. The pen was from my daughter. I accepted it and left it on the desk just glaring at it, all for the commercialism it represented. But the pen, the thought, it was precious.
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Just received an bill that my MRI I had is not covered. It says not proven to be an acceptable practice or something like that. I think everytime mistakes are made there should be a financial penalty paid for upsetting an the inconvenience for dealing with it.
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If we got paid every time we did someone else's job we'd be stinking rich.
My DH waited over a week for the urologist to call with an appointment for his biopsy. He finally called and his primary never sent over the referral. His PSA had gone from 7.2 to almost 11 so it is important. He doesn't feel well and doesn't look well. I'm very nervous. We will be back on the phone Tuesday
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I know. I go through this for everything. If have a saying now, about medical, if their mouth is moving they are wrong.Last yr spent 6 mo dealing w med records to file a Vit D3 lab correctly, our ins always paid in the past, every month if someone did it. But no, she had it in her head the way it was and it never got done right. My bill was sentto collections. $148 but still, that's $148. I spent more hours doing the appeal for ins to pay. And they granted it. And pd. Meantime I had made a few pay to collections so had to unravel that and get funds moved to another bill. So many hours when we don't feel well enough to relax and read a good book.
My journey to see specialists started w the DNP's office never doing the referrals. I was on them for three weeks before it was done.
The endocrinologist I chose I waited for 2 1/2 mo and then got a call from their office, she decided to close her practice. So I was back to square one. Later I found out she had referred patients to a few other practices, but not me. why oh why?
The list is endless. But i am in a good mood so this will suffice. I get it. We must micromanage for our own sake.
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Self pity rant, get coffee before you start reading (or skip it, that's always an option too).
I'm mad. This is bullshit. I'm mad that no one sat down with any sense of responsibility for what they were doing to me and really explained the possibilities and the probabilities of what might be long term effects. Instead they each did their piece work, like I was on an assembly line, and moved me along to the next specialty. But there is no one person in a position of case management or oversight. I am having problems and I literally do not feel that there is any doctor I can go to about any of it. My regular doctor doesn't know dick, as was made obvious when I went ti him about the lymphedema. He Googled the phone number of a pharmacy that sold sleeves. Well gee, that was a useful use of our healthcare dollars.
As I have written about before, my lumpectomy went wrong and I bled into the surgical site. This caused my boob to literally balloon up like a beach ball. I was in intense pain as soon as I woke from anesthetic. In the space of about 2 hours the pressure in that breast was so great that it left stretch marks (other boob has no stretch marks). All internal sutures holding my boob together were torn apart from the pressure of the blood (thus the pain!). She had to put me out again open me up, cauterize the bleeders, re-stitch the mush. I spent a night of pure agonizing hell in that hospital. I have never cried from pain, but I did that night. All I got was Tylenol. Useless, fucking Tylenol. Two days later I was black and blue to my pubic bone and in so much pain it hurt to breathe. I could not MOVE for the pain!
No one told me that radiation has a profound effect on scar tissue and oh, by the way, your mutilated boob is a MASS of scar tissue and this might be worse for you than for others and the effects for you might be more profound than for others, cause your boob is more scarred than average. It's like no one looked at the details of my case and thought gee, this patient needs to know a bit more cause she's got some issues. When I brought up problems and pain only three treatments in I was brushed off. I'm mad.
I am slowly realizing that everyday I hurt a bit more. For a while after the lumpy I began to feel good. Everything healed. I worked hard to get full movement back in my arm. I could finally sleep on my stomach. Now? After the radiation and taking tamoxifen, shit is going wrong. I am realizing that every day I feel a bit more pain. First it was slight lymphedema, then more swelling. Then the swelling got painful and the shoulder joint began to ache. Now the armpit / shoulder blade area ache. Used to be they ached worst by end of day. Now I wake up with that ache. My first steps out of bed (or out of a chair) are creaky and uncertain. Rolling over in bed hurts. I can no longer sleep on my stomach because my boob HURTS. There is general, overall pain and loss of free mobility. NO ONE TOLD ME ABOUT THIS!
What really set me off this morning was the painful lump below my boob, on my ribcage. There is a very tender lump there. The other side has a similar lump but not as big and doesn't hurt. I can't sleep on that side due to rib lump. Hub can't rest his arm across me due to rib lump. I suspect (this is just a theory) that my body, when it bled out, created pockets of pooled blood. Hematomas. I know they can take many months to resolve and are annoying and painful until they do. This could be residual mess from the lumpy that has been made worse by the lymphedema seeping through my breast, arm and side. BUT NO ONE BOTHERED to say, oh, by the way, since this happened to you, you might expect certain problems. No one was watching or feeling it was their job to proactively give me the head's up.
I probably would have done radiation anyway and don't plan to ditch the tamoxifen just yet (although I am taking half a dose without my oncologist's knowledge or blessing) but jeez, you'd think someone, somewhere might have noticed that other shit was going on with me and might have warned me about what to expect! I feel lied to and neglected. I feel miserable and negative (at this moment). I hate telling everyone I'm fine when in fact the quality of my daily life is worse now than it was 4 months ago and seems to get worse daily.
I'm going to go kick a stump.
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Thanks KB870, I know no one has any answers. Was just letting off steam. I don't blame the surgeon. I truly don't think she was at fault with the surgery. I think sometimes bleeders happen and I was one of them. At least she didn't blow it off. When she saw the problem she reacted immediately. And now, you can hardly see any scars on my body at all. It's what INSIDE my body, the scar tissue there that is being a problem. That is just plain bad luck, which all of us got a dose of, otherwise we wouldn't be members on this site, but living life as we did before, when none of this shit was a part of our daily routine.
Perhaps my problem is not enough wine.
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Yes a rant room please hold your ears! I am on my second fight and today's pathology shows platinum/taxol did nothing and it was a super hard treatment! Why my rant besides the fact after pathology I come back stage 3c? I cant decide why I want to keep fighting? For those of you in your battle I apologize in advance for saying that! You see, I'm a cancer victim and not for the fact that cancer has reared its ugly head again..it's because i watched it take my daughter, six months later my best friend who just happened to be my older sister, three months later my sister inlaw. Not to mention my mother passing a year and a day after my daughter and a month later my grandmother followed all of them. So my decision is how to keep fighting to live on earth in so much pain or just finally be with those I love? I should be on the phone with my sister now ranting about this not in a chat room trying to just let go! Cancer is something I survived in 98 and possibly could continue on with a few more times but when is enough, enough!
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Tmissimo, please don't apologize--I hear you, and I'm so sorry for all the losses and the sheer exhaustion. There are no words to express how moved I am by your post, but at least I can answer your question--the "when is enough, enough?" The answer is, not yet, because you are worth every bit of this fight. Please know you're heard, and you matter deeply.
Gentle hugs,
Binney0 -
I haven't posted in a long while. I thought I was good. Back at work one year this past July. Life was feeling normal until last week I was laid off. Restructured after 21 years. Mammo coming up and my safety net of a job is gone. I just want/need some peace. I'm too tired of life feeding me crap
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JJOntario, so sorry you have lost your safety net, thoughts are with you.
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I too got "laided off" shortly after my dx and surgeries. But, alot of others over 55 yrs old got laided off too. I felt pretty bad about it.
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Runor - heck w coffee..... before reading your post I knew I had to pee first. I love your posts. You echo me, probably all of us in some way. I had a surgeon I thought was a bc specialist due to way he was referred to me and who he had done surgery for. But he was general and it went badly. Their office was given a notebook about bc just for me and I did not receive it for 6 weeks. I did not know about lymphedema, that BCO existed here, not to allow bp done on surgery arm, labs not there. All very important info. MY arm was 2 dress sizes larger than other.
Right now, I am a bit pissed that the radiology business that reads the scans did not mention on my recent PET CT that there is something going on in upper and mid R lung lobe. Pulmonologist showed me the images yesterday, looks like a minor hurricane from 2 mo ago when the ground glass opacities are mentioned and pneumonitis named. But nothing on last week scan. Nothing. But the image of that is like a major hurricane, so worse. Now a bronch w lung biopsy is scheduled - a GI while under to check of silent acid reflux and possible esophageal sphincter damage. And I am negotiating tomorrow to have the liver biopsy done at same time, while I am under.
Worse the first appt yesterday was with RO. He said it is not pneumonitis, that it is better. And he thought my lung would all collapse if the R lung bronchi is not opened, it is scarred from the cancer (oh no, not from the radiation scarring, noo) and that scares me. Upper lobe was collapsed for a year until after rads several months.
And the lesions in liver are probably too large for the CyberKnife. And it is too involved for my little brain so I chose to stay w TruBeam. But that will not be able to get all the cancer in liver, just slow it down or something. So crap. And tht means more radiation which I don't think I can handle w/o a lupus flare - the grandest of them all coming at me.
Better - I went to DNP today - I said to her, I feel like I have pneumonia. Or a sinus infection. Possibly the sinus infection if there could be causing the mess in my lung????? And the cough???? But I don't feel like I have one, but I hear others say they had one and did not know, so perhaps. I had one foot in ER for last three days. again. She said, you're going on something. Put me on this antibiotic pill that is as powerful as an IV of same drug. And a nasal spray. And wants me to try Tesslon Perls again, to break congestion somewhat, said to take it more than a week for it to begin working fully, well hell, no dr told me that when it was prescribed so I would be able to go through rads w/o coughing which did not work btw. AND THEN SHE CALLED the radiology business and demanded to know why the new PET CT does not mention anything on my lung involvement at present, and what is on the images, why not on scan report. They had to relay message and I don't know outcome but probably will at MO appt in morning. I hate weeks of nothing but medical shit. Too many of these w no good answers. And you wonder what else the scan report is not saying.
Like the freaking word "unremarkable" which I realize by now does not mean activity is not there - it HAS to mean the SUV and size are not worth mentioning at the moment. That is my honest opinion. Should not ever be allowed. Because on the next scan it is remarkable enough to measure and report and if you are naive enough to think nothing was there then you get a new life lesson. Especially when report writer words it like this, "nodes have increased....." and you look back at last scan and nothing is mentioned. But they saw them.
Watched Cold Mountain again tonight. It makes me sob often, every single time.
Thanks for the place to speak my mind. I am tired. At least I am not crying myself to sleep tonight. Perhaps the antibiotic did something good?
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Bluebird, it is so not fair how some of us are unfairly burdened. I am sad reading your post. I hope you feel a bit better soon !
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