STEAM ROOM FOR ANGER

Sara536

dancingelizabeth, Before you ditch the psychiatrist, why not try telling her how what she said affected you. See if she is willing to discuss it with you. If she is, she might even apologize. I wouldn’t demand it from her though, but if the two of you are able to have an honest discussion in which you validate eachother and each make the effort to understand where the other is coming from, and can agree that it was a misunderstanding, that’s a win-win situation. On the other hand, if she is a top down sort of person and sees herself as always right in handing down her pearls of wisdom or her interpretations, find someon else. She should be offering you her “take” on things you tell her and you should be able to take it into consideration and decide whether ot not you want to act on it, or agree with it, or not. It may take a few trys to find a psychiatrist you really click with.

WC3

There is ongoing research for better testing. Most people aren't aware of this but we are actually running out of helium, which is necessary for the operation of MRI scanners.

Most of the helium on Earth was formed inside of stars and trapped in the Earth when it was forming. When you fill up a helium balloon and that balloon eventually deflates, the helium thst escapes rises in to the upper atmosphere and is lost to us essentially forever.

Artista964

Haven't heard of running out of helium in the medical community. Do you have a credible source to link?

kathindc

Interesting to note that October is also Domestic Violence Awareness Month. That ribbon is purple. We hear very little about it. In my area it is just starting to be mentioned. What is needed is acknowledgement of all cancers. How many of us knew that September was Childhood Cancer Awareness Month.

Got to love this one.

Yes, some are more vocal in stating why they are against the pink movement. Rosabella is correct in stating to each their own. Let us not diminish the feelings of others one way or the other.

I have heard that helium is becoming scarce and have seen several articles on the subject. A Google search will bring it up.

Artista964

They really should make 1 mo for all cancers. There should be other diseases profiled too, like heart, liver, etc. There are things you can do to prevent or decrease your chances. The bc pink stuff makes me suspicious of really caring or just save boobs as it's used externally and defines many women and well most men don't care for flat. If you post on male dominated boards, you'd be pissed about what they say behind a screen name..

runor

THe problem, for me is like Kathindc said, 'the party atmosphere'. There is something wrong with the neat, perfect little ribbon which signifies what? Did anything that happened to me feel neat and perky and pretty? No. I felt like I had been sucked into some vortex meat grinder and I was part of a process, caught on a tidal wave and then when it was done, splat, there you are, in a heap, wondering what the hell just happened. Then along comes some bouncy, smiley person to pin a pink ribbon to me and tell me to be positive. This is how people get punched in the throat.

What is the point of 'raising awareness'? Breast cancer is so damn common, EVERYONE knows someone with breast cancer, it is so epidemic and we hear about it constantly that we are almost immune to it. People tune it out. All these campaigns to BE AWARE, what does it mean? What good does being aware do? Does it prevent cancer? No. Does it heal people? No. Does it create the cure? No. Does being aware mean that your life is not shattered? No. Does donating money and being aware make you safe from getting breast cancer yourself? No. So .... what exactly are we being aware of? This has just become a slogan for which there is no real meaning. Be aware, be aware, the sky is falling, the sky is falling, yes it is, yes it is, but by being aware we can change it ...so far that has been a big, fat fail.

I am pleased for and in fact a little envious of people who feel a commonhood (didn't want to say brotherhood or sisterhood as both were too exclusionary and breast cancer affects both genders) when they see the pink ribbon. People do great things when they feel they are part of a bigger cause, a worthier goal. But the pink ribbon leaves me feeling cold. Because you put ribbons on gifts, and there was nothing neat, wrapped up or good about what breast cancer did to my life and mind. Now, if someone were to make the pink splattered bug dead on the windshield, THAT I could get on board with. Because one minute I was cruising along and the next, BLAMMO, head on into the windshield of breast cancer. A smashed pink mess where my happy, ridiculous life used to be. The ribbon is not representative of the battle nor the mental and physical journey. It does not convey the picture at all. I feel alienated by the pink ribbon and like somehow I have failed to be the model breast cancer patient, smiling in gratitude and calling myself a survivor. It's just not how I characterize my journey. I am outside that perfect, pink loop. It excludes the reality of many women and in that sense, for me, fails to make any honest impact.

AliceBastable

Runor, I love how you think.

On the helium question, it's not so much a shortage as a stupid decision to allow the government reserves to be sold off to private ownership. Capitalism at it's crappy, greedy worst. https://news.psu.edu/story/274153/2013/04/22/earth-and-environment/probing-question-are-we-running-out-helium

goodprognosis

Runor. Fantastic post. Says it all.

Pink ribbons for October is simply a commercial money spinning racket! What about the other eleven months?

Started out with best of intentions - then got hijacked - as always, by commerce.....

GP

JJOntario

Rumor has hit it exactly. I hate being out and seeing the pink ribbon attached to everything (most recently a pair of gardening gloves) Someone actually said to me that at least my cancer had the prettiest ribbon. Wtf??? I'm totally not against awareness but women are getting it earlier (it seems to me) and my Dr initially brushed me off saying my lump was a cyst. He sent me for a mammogram only to make me feel better as I was too young to really be concerned and I had clear mammo one year before that for a different cyst. Awareness also did little to educate me and seek medical advice about a leaky nipple 6 months prior to that. I knew so very little about breast health but I did know how to smoosh them into a pretty Victoria's Secret push up bra.

My BC was hiding behind a cyst. If my breasts hadn't have been cystic I might have not found it until much later .

Lula73

since we’re on this topic of giving to other cancer charities other than that big pink one that would gladly prevent any other organization from using pink for anything, I want to let you ladies know about this. The young man is moving forward with this endeavor to help support stage IV ladies. Let me know if you want in!

bella2013

I would buy them

KatyK

What a kind and caring young man. Put a smile on my face to read about this. Most people who get breast cancer are women , and yes some men too, but I think we are worth the research and effort to discover better treatment and hopefully a cure. And I hope the same for all other cancers as I’ve seen too many friends suffer with other types of cancer.

Capecodgirl

lula- I meant to respond to your earlier post and was sidetracked. I love these and definitely want in. If you let me know how to order I will be all over it. What a caring young man your friend is

Jumpship

Rant of the day. My car was hit on the way to work. Not my fault. Filing workman's comp claim and I'm required to list all doctors for the last 5 years. My neck was injured. There's no need for them to know all my cancer doctors and treatment plan!!!! I feel so violated! I consulted the union's attorney and I had to disclose medical records. Makes me so angry! I should get to decide who to tell

Meow13

Just tell the gp doctor. You certainly didn't get cancer from a car accident.

Sara536

Lula, What a wonderful young man! I hope some media people have (or will) put a spotlight on what he is doing with his hair- he could maybe even start a campaign among other young people to do the same. CNN could do a report when hundreds of kids cut their hair at the same time. Now that would certainly raise awareness!

Lula73

I like the way you think, Sarah!

jaycee49

Yesterday was my first cataract surgery. The fun started on Friday afternoon. My fault, really, because I was supposed to call them to register three days before but I didn't see that. So much paperwork. They called me at 2 PM Fri. and did a bunch of questions on the phone. I asked if they would use my port and she said she would ask. She never did. She did say that I needed to bring them my last "progress notes" from my oncologist or the anesthesiologist wouldn't work on me. Good to know so far in advance. I scramble down to onc office and get the notes. Interesting. I'd never seen those before. Lots of errors. The phone person also told me that I needed to be there at 9 AM. My surgeon said 9:45. I have it on the order. Whatever. Yesterday, Monday, I get my port accessed at 8:15 AM. (DH is driving me all over and the dog is indignant.) I get to Mountain View (not my regular hospital) at 9 and wait until 9:45. That's when they start. Of course, the anesthesiologist would not use my port. He said something like it is too small and if my blood pressure drops during surgery, he wouldn't be able to push fluids fast enough. That is bull dookey, of course, but I knew he as not going to change his mind. I had a really good guy start the IV and it was fine. They use my favorite anesthesia, Versed, so I don't remember anything. But I also don't remember what they told me afterward. DH was supposed to be listening (he even signed a paper saying he heard it all) but it was a good thing they also gave us written instructions. Big problem is I'm not supposed to sleep on my left side. (First surgery was on the left eye.) I can only sleep on my left side. One time I had vertigo really bad, I had slept on my right side. That was years ago but I still try not to sleep on my right side. And you have to sleep propped up on two pillows which I hate. Oh, and I had this huge eye patch taped to my face. I got maybe two hours. I went to my optometrist here this morning and got the patch off. I have to put three different kinds of eye drops in four times a day. I can't sleep on my left side for a week and I have to put a patch on when I sleep. Showering is ok if you don't get water in your eye. How would you do that, I wonder. So this is not all that much fun but I hope the payoff is worth it. I can see ok to read, watch TV and read/type on my computer. That's all I do.

Fun, Friday/Monday, right? On a good note, there is way less pink junk on NFL football and they do public service announcements for awareness of all cancers. That was good to hear.

runor

Jaycee, that must have been some surgery! Everyone I know who has had cataract surgery is stone cold awake for the entire thing. They strap you to the bed, put freezing drops in your eye and go to town. You walk out, patched up and horrified half an hour later. I think it's inhumane! Hoping for a speedy recovery for you!

jaycee49

runor, cataract surgery has advanced a lot. It is really no big deal. I just wish I had known the truth about certain aspects BEFORE the fact, like that the guy would not use my port. The surgeon's staff humors you by telling you whatever they think you want to hear. Like the port thing. When I asked them about it, they said, "oh yeah, they do that all the time." I left out the best part. When they wheeled me out to be picked up by DH at the door, DH was in the driveway picking up nails. He had seen a construction truck and some guys working when we arrived. He worked construction when he was a kid with his dad. They never dropped a nail anywhere and if they did, they went back and picked them up. He always checks when he sees workers. He picked up about 15 nails in the driveway that people use to exit the facility. This really tells you more about him than the facility. We backed out of the driveway, opposite the nails.

I'm feeling a lot better. I just need some sleep. Last night I was told not to take my Ativan. Tonight, I can. Yay.

Lita57

Tnis is the pin I made for @#$>October...

L

Artista964

nice, lita. Not pink either, bonus.

AliceBastable

Oh, Lita57, I love that!

WC3

Not happy. Not happy at all.

I was changing PS's to have my surgery in the proper treatment window indicated for my type of cancer after neoadjuvant chemo because the date I was given really is too far out for my type of cancer...I had to go in person to do this because I didn't have the number I needed and the general number for the office was just a recording asking me to leave a message. I finally got in touch with the right person but now my BS, who I like, can't do the surgery much sooner and the ORs are all booked up. I don't want to leave my current facility but I would also like to not die so I decided to check around at other facilities.

Place #2, which originally told me they could do it in the necessary time frame, said I need to have a follow up with the BS I had a consultation with months ago...understood, but there is not an appointment for that until AFTER the soonest my current place can do the surgery, ok, understood, I don't have a problem seeing a different BS, only they will not let me see a BS there who has sooner availability because their policy is you can only see the surgeon you saw at your first consultation. WTF? Well ok, if I am still considered a patient and they won't let me see someone who can get the cancer out of me in the proper time frame, as a matter of policy and not lack of availability, then my policy is reporting policies that needlessly endanger patient lives to JCHO.

Place #3 is happy to see me this week for a consultation but is out of network with my insurance.

I am positive I did not have a pCR to my chemotherapy because the tumor is still visible on MRI so those resistant cells will get almost a full tumor doubling time to multiply unless something can get worked out. In the month before my chemotherapy it was growing so fast it was visible. To make matters worse, I have increased angiogenesis and I now theoretically have more TMEM sites, in other words, more doors, more highways for cancer cells.

My surgery was supposed to be 3 to 4 weeks from my last infusion, 6 weeks max.

I'm just very upset about all of this. Why was I was even assigned a PS who wanted to book so far out to begin with?

The surgery scheduler for the new PS recommended I see if my oncologist can do anything about and I sent a message but if the BS no longer has anything sooner and there are no OR slots then I don't know what can be done other than find another facility, or just sit here twiddling my thumbs while my odds of survival drop.

Lula73

WC3- so sorry you’re having to deal with stupid policies that don’t make any sense. So frustrating. Since you mention PS I’m guessing you’re having recon as the same time? May i ask what kind of recon?

WC3

Lula73:

I am having expanders placed and will then have DIEP or some similar reconstruction when I gain enough weight for it as I lost weight during chemo. I actually have enough fat in my inner thighs and buttox now but my facility is no longer using the inner thighs due to the risk of lymphedema and they don't like to use the buttox as a donor site because of the difficulties having incisions on both sides of my body presents...one of the PSs also said it will look like a shark took a bite out of my butt but he hasn't seen my butt...if a shark took a bite out of my butt, I would then have a nice butt and jeans that fit would be much easier to find.

NOLA offers some more options but they are also out of network with my insurance, my insurance only covers their Crecent City hospital, not their St. Charles hospital, it would take two to four round trips across the country, and that would likely have to be by train, bus or car across the country as I don't think I can fly.

But I am just more concerned with getting the cancer out right now and mentioned I was willing to go flat temporarily to do it. They think that will potentially ruin my chances for reconstruction though, thus the need for temoprary expanders.

Lula73

So, going flat will not mess up your chance for recon if you go DIEP or SGAP. BUT your outcome would be aesthetically better with skin/nipple sparing. Using the thigh flap more often than not causes permanent numbness across the back of the thighs (not a good thing as we need those muscles as we age) so probably a good thing not to use them.

Can you elaborate on thinking you can’t fly? Almost all of us fly to NOLA to have the surgery. If NOLA can get you in and do a mx with immediate SGAP at Crescent City so 1/2 the bills are in network I’d jump on it. Alternatives to NOLA to check out would be Dr Craig Blum with Sweetgrass PS and Dr Marga Massey both in Charleston, SC. Both were NOLA surgeons and they moved back home for family reasons. And both take additional insurances other than what NOLA takes. Most ladies that go to NOLA or SC only fly out there 2-3 times overall. Consult is done by phone and email, fly out for stage 1, fly out for stage 2. If you need nipple recon or another revision you’d fly out for stage 3. Most of us are good to go after stage 2. Trust me when I tell you it’s worth it

Parrynd1

My dog has cancer. I know he is old, 12 to be exact, but really!? It’s not bad enough that I have cancer with a shitty prognosis but my dog too? Everyone in the family loves him. They always try to steal him when we visit. He was supposed to be there to comfort them when I’m gone, but now it’s going to be 2 huge hits in a small time frame from the same disease. What’s worse is he might have another year or two if we could afford treatment, but because of my cancer I can’t work and from my care there is financial burden already. If I could,we could take care of him the way he deserves. I’m just so angry with this disease.

WC3

Lula73:

I don't think it safe for me to fly right now due to another condition. The lower cabin pressure might pose a problem for me.

Micmel

Parry~ I am terribly sorry about your doggie. I know that they become kids to us. Our sweet tag is getting up there as well. I know soon we will have to put him down. But I don’t like hearing a precious dog, who can’t speak of pain..... like a child .... gets cancer. I just hate it more than anything in this world. No matter what kind. Sending hugs to you ! ~M