So....talk about.....CANCER SUPPORT THREAD !!

[CoyoteMagic]

The one thing to remember with the port it, they need to be super sterile when accessessing it. Nothing can touch the area once it is accessed that is not sterile. That line goes straight to your heart.

I'm one of those people that has to be difficult. lol. My doctors refer to me as their "Science Experiment". My port decided it was going to flip over. They had to go back in and "tack" it down. It didn't flip over again. After I had my masectomy, I hadn't had my port access for nearly 2 months. (OOOPS! your are supposed to have it flushed every 30days.) I went in, had it flushed and ended up in the emergency room a day later. Not having it flushed had let some funkies build up and I ended up septic. They put in in SICU--Special ICU. Scary. It was just down the hall from the morgue!!! After a week they moved me up to 6South. You never want to be on 6South!! Those people have some really funky stuff!! I didn't think Christmas was coming that year cuz Santa was 2 doors down from me and nurses didn't go into his room unless they were in full Hazmat gear!! They even put his sheets in a special box when they stripped his bed. There was a guy across the hall that had sign on his door that said, "Airborne Pathogens" Let's just say I didn't leave my room much!! Actually it was too much fun watching the other guy across the hall. When I first got there, he was smoking in the halls. Next he used the disposable urinal and walked down the hall with it, splashing all the way. Then he was walking up and down the neked. Totally!

After about a week, they decided to take my port out and put in a "pic-line" in my right arm. (port is easy getting out. They do it in the office, or in my case the my hospital room) But I got to go home before Christmas!! I spent New Years, "hanging" from the drapes. I had to have IV antibiotics 3 times a day. The only way to get them to drip correctly was to hang the bags from the top of the drapes. That lasted for 3weeks.

Then one day redressing my the line, it decides it's going to pop out. (told ya, I'm not like normal people, can't use any of the stuff they use to tape things down with, Tegaderm, Duoderm, Tape. Thing popped right out as Lurchie was on the phone with the home health nurse. She starts screaming "Apply Pressure!! Apply Pressure!! I'll send an Ambulance" She's scaring the poo out of Lurchie. He finally gets her to tell him why to apply pressure to which he reply, "What bleeding?" I didn't bleed a drop. Supposedly it should have been spurting blood. Oh well....

See what I mean about keeping a sense of humor?!!

Please do find out what brand of port you have. If it is the "Power Port" brand, you need to know that if you need to go for any more CT scans. They have to use the special "Power Port" access needle to hit your port. Otherwise they will send you back and have to reaccess it with the right one. I had it done 3 times one night before they got it right!!!

It's gonna be fine hun. Life is nothing but one adventure after the other!!

 

[Hillbilly Hen]

Luna, you continue to be in my prayers

 

[Lunachick]

Thank you HBH.

Hey Coyote, I was worried about you, I was lurking for a bit and didn't see any of your posts! Now I feel better that you posted.

Wow, you don't do things the easy way do you?

The port I have is a Vaxcel port with PASV

They gave me two cards with this info and I have to carry it with me at all times. And they told me at the hospital that it has to be flushed once every 30 days. The instructions are on the card. I don't even know if it's non-valved or valved. But I figure since I'm going to the Dr's every month for treatment, they will do the saline flush while I'm there I'm guessing...........this is my first experience with all this medical stuff and there's a lot of info to absorb, and I can be stubborn sometimes with info, like.....what was that again? Can you tell me one more time? Then when I'm home and think into it too much, and start second guessing........I'm only hard on myself, don't worry.

 

[I have WHAT in my yard?]

So Luna and Coyote, I need your advice.

You both have such great attitudes about all of this. My best friend is starting chemo today. She had a lumpectomy, her nodes and borders are clean so she should have a really good chance. But her attitude STINKS! Seriously is awful. I cannot get her to even consider talking to anyone about it. She doesn't know anything about medicine. I have been repeatedly shocked at what she does not know, so I suspect the nurses and doctors aren't going over the details like they should. She has never really been in the medical system before so she seems (to me) to have completely unrealistic views of how she should be treated. She thinks everyone in the cancer center should be on their toes to respond to her at the drop of a hat. She refuses to give them her cell phone number and is furious when they don't return her calls at the time she specifies.

I know she is trying to regain some sense of control over her life. I really do understand that, but she is antagonizing the people who are trying to help her. It is her weird way of being scared. I am at a loss as to how to help her get through this. She lives over an hour away from me and I work full time. I want to drop everything and run to help her but I cannot. So I feel frustrated and guilty. She has no family nearby and an on again off again boyfriend.....

She is going to one of the best cancer treatment facilities in the country, they have instant chat with nurses and social workers on line 24/7. But if her doctor doesn't call her back between 5 and 5:15 (for example) she is furious. What can I do? How d I support her when she's even ticking me off!

 

[Lunachick]

I have WHAT - I think you said it best, I think she's scared. We all go through the "scared" part. That's when you make a decision.....do I want to be scared all the time? NO Do I want to be a total B*tch about it? NO. I think your friend is also going through the stages....first, you are in denial a bit, "this can't be happening to me" then you get scared thinking about it or it's outcome. And then because you're feeling scared you get angry about it. She may be feeling all of that. Who knows?

I haven't started my treatments yet. I figure that will be happening in a week or so. I get a day here and there where I feel uncertain, scared, ticked off.......but then I do something I like and that small feeling of pleasure makes all that scared feeling go away and I decided that I want to feel the pleasure of things in life. So I do that.

I'd rather die laughing or smiling, then crying or scared.

I suppose you can just be there for her when she needs you? I'm sorry I can't be of much help in the advice department, I can only tell you how it is for me.

COYOTE !! Where are you? We need your wisdom!

 

[ranchhand]

Mom had lung cancer and had to have a biopsy in the next city over one day. I was allowed to stay in the room for the procedure because she had a tendency to listen to me and just yell at the medicos. Just before the procedure began, I asked why they were doing it again, since it had only been 4 days since the last one.

They stared at me! Said what do you mean? I explained that she had had one done 4 days before at the other hospital. They hadn't gotten the results from 35 miles away.

But the worst/best part? They said oh dear, no, we won't do this today after all. Mom, all 5' of her, came up off that table shouting at the top of her lungs, "I'm gonna shoot you! I'm gonna shoot you all!"

Talk about clearing a waiting room in a hurry!

and

was how I felt! I still shake my head at how she treated doctors and nurses.

 

[ranchhand]

Her mother, my grandmother Lucy, was even worse. When she was staying in the hospital one time, Mom and I went to visit. A nurse came in because Lucy had pushed the call button. She wanted a cup of the vodka they kept at the nurse's station just for her!

(Still don't know how she conned them into that.)

So the nurse, being a real sweetheart left to get it. As she got to the door, Lucy very imperiously called her back, saying "Aren't you going to ask if my guests would like a drink, too?" The reaction to that was 3

s.

I guarantee you I am much nicer and more co-operative!

 

[I have WHAT in my yard?]

Thanks Luna! I have my seat belt on and I am ready for the ride!!

Ranch? If they kept vodka for her she must have been a pretty good drinker. Over the years many hospitals have decided that if a person has been drinking heavily for a long time and was ill or elderly it was kinder to keep them at a maintenance level of alcohol as most people do not realize that while heroin withdrawal really hurts only alcohol withdrawal will actually kill you. Some nursing homes will allow a small quantity of sherry or wine daily as it is not bad for you - but vodka in a hospital? She probably needed it.

 

[CoyoteMagic]

Quote:
I'm here. Didn't have a good night sleeping last night. Didn't sleep at all last night, nappy sleeping today. Meds they gave me for about 2 months ago have increased my hot flashes 10 fold. I swear, some times I think I'm melting!! (yeah, yeah, let's hear the wicked witch of the west jokes!!)

Like Luna said she's scared. This is her way of taking back some control of what is happening. But she is going about it all wrong.

She needs to redirect that anger and fear towards the disease not the people trying to help her. When it comes to Cancer, Knowledge is power. You need to find out all you can about the type of cancer you have. Just because it is breast cancer doesn't mean it's the the same type I had. 3 of us at my school had it, all 3 had a different type = different treatment. Yeah some of them are the same drugs, but some of them are totally different.

Striking out at those around her is only going to push people away when she needs to be pulling people closer. I am a true believer that attitude is the number on key on beating this disease. I refuse to let cancer beat me. I believe that fear is a fuel that causes cancer to grow. I'm not saying that there wasn't a time when I wasn't scared; the first time the word cancer was said, I lost it. Then I got mad. And then I started fighting.

I was lucky. I had somone who took all the burdon of worrying about paying bills, making sure the critters were fed, getting to and from the gazillions of appointments and other day to day issues away from me. My husband told me on a daily basis that my only responcibliity was to get better.

It is going to be a wild ride. There are up days and down days. Thankfully the down days aren't nearly as many as the up. When you come out on the otherside, you can tell the rest of the world, "You don't scare me, I survived Cancer!!"

 

[I have WHAT in my yard?]

I think you're right Coyote! She might just be stuck in the mad stage.

This major life event has brought home to her how little she really has in her life. She has friends, but she has no life partner of any sort really. All of her friends are married and many of us live good distances away. There is no one to be there for her. Her friends are willing to try to shoulder what they can, but none of us are in a situation where we can drop everything. I'll be able to do more once the school year ends.

I agree also that research helps, but she only did a teeny bit and refused to do any more. Her relationships end because she won't face her own demons. Either the cancer will force her past that blockage or it will grow on the fear. I feel very sad for her and hope she is able to move into the I'm going to fight this stage!