STEAM ROOM FOR ANGER
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I'm so sorry, April, that you lost a dear friend to suddenly something so rare and terrible.
"Live it. Eat that dessert, enjoy that movie instead of cleaning the closets."
Very wise words. I'm trying to learn a little of that myself since I got diagnosed.
Carrie
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Thank you everyone. The autopsy will be today. At first her husband was not really thrilled about having one, but her kids talked him in to it as they have a right to know if it is the rare familial type or more likely the spontaneous type. Also, medical science needs to study this very rare disease as much as they can since only around 350 people per year are diagnosed with this.
Thanks again for your condolences and hugs. As we head into the Christmas season, I will make sure I imprint all the memories I can on my heart.
Lita and Katty, an extra special hug for both of you as I am sure that as Stage IV, your time is very precious to you both. Thank you for consoling ME when you have so much more on your plate. My prayers for a blessed Holiday Season for all. xoxo
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Thanks, April. So very sad about your friend tho. It sucks when it happens during the holidays.
I'm planning on donating my body to either Stanford Med Ctr or UCSF Med Ctr. They take out the parts they need, cremate you for free, and return the ashes to the family in about 6-8 weeks. However, if I develop ascites (where the liver blows up w/fluid), they will NOT take me - that's their rule.
There really is a need for bodies that have been ravaged by St IV. Medical students need to open up the bodies and see for themselves what this horrible disease does up close. I have mets everywhere, so they're sure to have a fun time with that. I heard they take very good care of the bodies and refer to them by name. They are very respectful with the cremation, etc., and I'm sure it's the same at any reputable med school that takes in bodies of the deceased for research.
In case anyone doesn't know: You CANNOT be an organ donor if you have cancer. Even in organs that supposedly show NED (no evidence of disease) there could be hidden, undetectable sleeper cells waiting to grow and proliferate. That's all an organ recipient needs...a new liver or kidney, and bingo, X months later s/he develops full blown cancer. Of course, this could happen with donors who die in motorcycle accidents, too - they simply didn't know they had cancer, and the drs didn't bother to shove their bodies thru a CT scanner b4 harvesting organs. But they obviously have to lay the law down when it comes to KNOWN cancer patients regarding organ donation. Geez, I feel like some sort of ghoul discussing all this now. Well, happy Thursday.
L
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Hi Lita
I to have made arrangements tor my remains to got to the medical school here, both my parents donated their remains to the school
and yes the bodies are treated with the upmost respect. Here they kept the remains for almost a year then cremate and they have a memorial service each year for the donors and then we had our choice of how we wanted the ashes ...they would return to us or spread them in the memorial gardens at the school. I had no idea that I no longer qualified as an organ donor but it does make sense.
Charlene
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Lita, I so agree with science needing more information on what diseases do to our bodies. They need this to help them find treatments and cures for the many types of things that kill us, many of you way too young.
As for the medical schools treating the people they study with respect, I have heard this first hand from a good friend of mine who works in research and they use donated bodies. She said that even the worst prisoners such as murderers who donate are respected as they had an incident once where the doctors were saying terrible things about that person and one of the pathologists flipped out and said that the body belonged to someone's son, brother etc. and that they must be treated as such. After that, everyone realized that these were human beings, even those who they did not agree with their lifestyle.
I did know that you can't donate organs if you had cancer and I have had it twice so they definitely don't want mine. (the first time was over 35 years ago and it did not involve my breasts)
Have a wonderful holiday ladies!
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I read about lady asked about hat, made me smile. I went to bc event this year couldn't do walk as ankles had swollen and my feet were killing me just getting to start of event, so I walked over to shade it was unbelievably hot that day. I wear wigs so no ones knows unless I want them to what's going on with me and frankly for me to pretend I'm fine. Alas I'm sweating feet are size of tree trucks I can't stand felt woozy I'm trying to wait for people to get gone but they keep coming just ignoring me which was all good, but I'm dying so I just said f*** it and took my hair off so could wipe off sweat 💦. I all of a sudden start getting looks of pity and people stopping to ask if I'm ok. Things I don't normally have to answer and this reporter wants me to tell him how this event has affected bc. I can't talk for lump welling up in my pit and eyes so I shoe him away. I realize at that moment I hide to protect myself. You brave souls who walk with your truth amaze me and if I ever stare too long I am so sorry, but I am proud of you.
Pam
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Your post brought tears to my eyes, Pam.
Don't ever forget that you are brave and courageous, TOO! It's perfectly fine to live your life privately if you choose. It's nobody else's biz but yours, and if that helps you get thru the horror that is cancer, then so be it.
(((Hugs)))
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I wish I could "like" posts here the same way we can on Facebook. Thanks Pam...thanks Lita...just love the authentic words, feelings, and thoughts that are shared here. ((Hugs))
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I am so pissed off with both my mother and father. They have no idea but I am fuming. My parents were divorced when I was 15 and I always thought they were blaming each other. Never in a million F'ing years did I believe it had anything to do with me their only child. I always lived with my mother there was no choice. Their fights were scary when I was 13 years old. I felt I couldn't have my friends over too embarrassed. At age 15 my parents divorced I always felt my Dad divorced me too. But I gave him the benefit of a doubt, he wouldn't help at all with my college expenses but that was not in the divorce agreement. Apparently everyone thought I was a worthless dolt of a girl. Sure proved them wrong.
Now Mom and Dad's health are waining. I told my father for years to come and stay he and his wife always said he can't travel they are too old. So things going pretty good since I retired I travel to the east coast atleast twice a year. Dad telling how happy he is that I visit. I've been doing it for the past 25 years but recently more often since I'm retired. Well now he asking me to join them in Cabo san lucas. What I thought you couldn't travel? He confesses he has blamed me for all these years for not supporting him during the divorce. But guess what he realises he was wrong. It took all my strength not to hang up. You F'ing jerk you are blaming your teenage daughter in 1975 and just now realize you are wrong 2016. Mom is demanding all my time since she has had a stroke. Jesus H. Christ what the hell. I am beyond disgusted and you know what I have been dealing with a huge black cancer cloud over my head.
I am so angry. I am going to spend my TIME with my husband of 34 years and my grown children. You know it is unbelievable how selfish parents can be.
I will never discuss things with either one, but you can bet I am not going to Cabo.
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Oh, Meow....I feel so bad for you.
Your dad gets the "One of the Shittiest Fathers of All Time" award. He blamed YOU for not supporting HIM? What the bleep!!
Maybe paying for college "was not in the divorce agreement," but he's your DAD for criminy sakes, and he should have at least helped out (i.e. "supported" you) a little in that regard. Then he bald faced LIED to you about not being able to travel all these years. Heck no, I wouldn't go to Cabo either. He'd probably expect you to pay your own way to boot.
Yes, parents can definitely be selfish. After a certain age, they start to act like babies. You don't need that when you're battling cancer.
I'm with you...just do your own thing this Christmas and don't even think about them. They don't deserve it, and you don't need the stress/aggravation.
We're here to support you.
L
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oh Lita, I am beyond pissed. I am going to focus on my children and husband. My husband is down playing the telephone call but I can tell he is pissed too. I am thinking it it his wife who doesn't want to visit. But my mom lives by herself and not with us. So you know they can't use that excuse.
I am done. Just want to rant because I certainly am not going to talk to my parents about it.
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You are absolutely in the right! Enjoy your holidays with your husband and children and try not to give him another thought.
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Hi Meow13
Frightful that you have to deal with two selfish idiots of parents. - I know the drill!! Been there, have that T-shirt. Domineering mother, weak father in my case!
I see you do not want to confront them on the issues, and that's your choice.
I read recently on a site I checked out about 'dealing with forgiveness and not being bitter', that it's a good idea to write them a letter - you don't have to post it but it's a great exercise to get it all out of you.
You should try it. Don't burn it immediately. Let it sit there a while, come back and read it again and then see if you need to actually post it to them. Just be ready for total denial on their parts if you do post that letter. I know how selfish people operate.
Keep your chin up and enjoy the Christmas with your real family. Remember we don't pick our parents .....!
GP
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I will, I feel better for ranting with you guys. At the age my parents are telling them isn't going to help. They would never get it. I did tell my mother to enjoy feeling good and not worry about a recurrence of a stroke. She is on blood thinner and I have heard her gp and her cardiologist say her risk of recurrence is significantly reduced. Also she needs to find an antidepressant that works. My kids who love her are not wanting to see her because of her gloom and doom. They are worried and want their grandmother back to her happy self. So do I.
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I will give some back story in a condensed way. Everything about my cancer story includes waiting unnecessarily Or including outrageous delays. Abnormal Mamogram on June 23, 2016. Excision lumpectomy September 16th. Bilateral mastectomy with tissue expanders on November 28. I've only had two fills, and I get the call today that all of my weekly expander fills have been cancelled.,, my P.Surg is going out on leave and I can't get fills until February 2017. FEBRUARY!!!! I am struggling with these mutated hard monsters, and am in pain! I have to sleep on my back for another two months?!?!? Is this even allowed?! What can I do
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Sorry to hear. I'd be pissed too. The only rush to get them filled that I know of is if you are up against rads timing. You'd want the fill done + overflow before it since rads can tighten skin. THe ps never did my fills. MAs and PAs do it. As for pain, call the office and ask for pain meds. There HAS to be someone filling in for a surg that is out. Call the office after hours to get oncall surg.
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You mean someone else can stand in for her and do the fills. Yes I would be livid.
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Have you seen the devices where you can do the fills I believe with air yourself cutting tge time required and pain because you can do it slowly patient controlled throughout the day. I will find the link.
http://www.airxpanders.com/videos/
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I wouldn't dare do a do it yourself for something that is done in a clean sterile office... Not worth the risk of making it worse or infection..
And never heard of air. What keeps it expanded is the saline fluid they inject according to your tolerance. Don't mess with do it yourself unless ok by a doc....
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Thank you Artista. I will check in to that. I was so angry when the lady called, I wasn't thinking clearly. Ps. It's also not lost on me that I came off as a total ass on this discussion board... I feel sheepish in complaining especially when I read the other signatures and issues on here.
Wow Meow... air expanders. I will check that out as soon as some of my hot air cools down. He he
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Yes look at air expanders this is a medical study to make reconstruction more convenient putting the pateient in charge. Artista read the article it doesn't involve needles or sterile environment. It is a device implant where you can slowly release the air, compression. Dont dismiss stuff you havent read. Innovation that is what we are talking about new medical treatment not brain surgery. It will not allow you to fill past a certain point.
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Unless a surg with experience with these things says go ahead and do it yourself, then fine. It may be new and I think I'd wait to make sure there's no air in how it's supposed to work. And doesn't she already have TEs in with 2 fills already?? I didn't see she wrote she has these, or did I miss it somewhere here? What's the point if she doesn't even have these in??
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correct Artista... I've had 2 fills
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I would think then that unless you want to pull out those TEs and start over with this, if they offer it where you are, you are kind of stuck with these. I personally would never undergo a procedure unless it's a must. I say this as I'm on 2 abx on infection watch looking to possibly be admitted if things don't start to look better---and my ps is in Australia till after the year. His PA stays in touch by phone and pics to guide her at least with this fiasco..
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oh Artista, ouch and my heart breaks for you. Yeah, maybe by the time my 5 year old daughter is an adult, these air expanders will be the norm. Hugs to you and I hope your infection gets better.
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Well I would atleast be open minded. I did not suggest she pull her TEs out just discussing an alternative that is currently accepting applicants. Wow people can be really nasty and closed minded too. Merry Christmas you lovely ladies.
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It doesn't make sense for her at this point, is the point, She has the TEs in with 2 fills. We are talking about her, right, in response to her frustration of is this right??, what to do now?? Pointing out a new device isn't going to help her here. It's interesting info and putting it on the TE forum for those who will be facing recon is not a bad idea. They can speak to their ps about it, assuming it is something that is available everywhere or will be.
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LovesLiterature
The TE's feel like titanic boobs, on everyone. You will master the art of side sleeping trust me. Pile pillows for comfort but get used to waking for position changes. I swear it's not funny I just had it with sleeping on my back as had back pain. Life does get better once you realize it's just like cuddling two shovels every night. God bless I'm right here with you and mine will be TE for while longer- more than 3 mos 😳
Pam
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I have a major resentment brewing that has spilled over now. I have family members thru marriage, they are not even blood relatives but still considered family. This is my step-brother's wife....her brother was engaged to a woman who was dx'd about 6 months after I was. He ended up dumping her and got married and had a baby with another woman. Complete and utter asshole, when I see him at family gatherings he can barely look at me because I'm sure I'm a reminder of what a terrible person he is. He's sickening and to make matters worse, his mother defended him by saying that Lisa was nothing but doom and gloom and it was just too depressing for everyone to be around. I overheard her saying this and frankly I'm appalled by the whole thing. Never once have these people asked me how I'm doing, feeling...anything. They knew I was in contact with Lisa as a support, then I got accused of stirring up drama because I told her he had married someone else.
I really do not like these people and it came to a head over Christmas. That is too long and complicated to explain over this, but let's just say I've had it with trying to not ruffle feathers. I see that these people are only about themselves and be damned about anything or anyone that doesn't go with their program. I hope to not have to see them anytime soon.
thanks for letting me vent.
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Tang....geez, WHAT an asshole!!!
I feel sorry you have to be exposed to that shiz. Well, at least he's not a blood relative, he's the step-brother's wife's brother, (your STEP in-law) so there are some degrees of separation. And the mother is a piece of work, too...of course she'd defend him, but, my God, have some human compassion and decency!!!
Hopefully you won't have to see any of them any time soon. And if the subject ever comes up, speak your mind. Some people need to be schooled on these things. But you know what, Lisa is BETTER OFF NOT BEING WITH HIM. At least she found out what type of CHARACTER he had b4 getting legally hitched. Just think, she could have married the asshole, had a kid, THEN come down with cancer, and then gotten dumped, left to deal w/cancer and the kid!
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