STEAM ROOM FOR ANGER

mara51506

Illimae,

Wanderingneedle

Thanks, Mara, it’s difficult. The youngest is autistic and when she’s here (no drama at Grandma’s house) she doesn’t want to leave, always asking to stay. She’s my best medicine.Our son lives with us so we have them every other weekend but I miss them daily.

mara51506

Wanderingneedle, poor little sweetie. It's so hard being away from those you love. Will keep sending my good thoughts out to you and your family.

goodprognosis

Runor, I think you can give it but you can't take it....

You did take a swipe at the OP in another thread. Yes, you brought it over to another thread. You know it. Own it.

Now Artista is getting jumped on too, just because she's kind. What's wrong with everyone?

GP

Beesie

I've been catching up on the posts of the last couple of days.

I must be slow. Or clueless.

What's wrong with having a respectful, supportive, and sometimes humorous discussion about death with dignity? And with this being an open, public website, and with that discussion veering into the topic of how someone might choose to end their life, what's wrong with posting a suicide prevention number, just in case a reader or participant who is otherwise physically healthy (whatever stage of breast cancer they may or may not have) is depressed and suicidal?

Similarly, since the opportunity to vent here is so helpful to so many, and since many Stage IV women do not come to this thread and some choose to post only in the Stage IV forum, what's wrong with having a separate Steam Room in the Stage IV forum, in addition to having the Steam Room here? Anyone can post here, including Stage IV women, but this creates a space for those Stage IV women who would like to vent but who prefer to stay within the their own forum. What's wrong with that?

I don't see either of these things as being an "either/or". I don't see how one negates or lessens or restricts the other. I see it as a continuation of the open discussion that we've seen for 188 pages of this thread, and a recognition that the audience on this site is very broad, with different issues and different concerns.

What am I missing?

Simone80

I've been following this discussion. I thought this thread was supposed to be a place where people just vent and go on. I doubt I will ever post in this thread as people are too rude.

mara51506

Simone and Beesie, you are both right. We are supposed to pop off about a stressor in our lives and maybe get support. It will be a shame if people lose it. I know this has helped me a lot in times of intense stress to say what I need to. I also don't want a separate room. That is not necessary. That will not help. This is not about early stage versus late stage. This is about disagreeing while respecting others in this group.

Micmel

Lol. The last four of six posters are all stage four. Lol okay yeah that makes sense.

mara51506

I totally agree Micmel. Plenty of Stage IV post here. We don't need to be shoved somewhere else. Thanks but no thanks.

mistyeyes

Illimae's post is the best!! And I totally agree with Simone8. Just my opinion.

runor

Good prognosis, you may be right. Or not. I'm not entirely sure. But good on you for putting a name to it!

SandiBeach57

My Rant:

I am mad that I was not educated by the IR and MO on PORTs prior to my procedure in 2016. My Bard port is not a Power Port and precludes me from having MRI contrast injections. So my poor veins have to deal with an IV.

BCO..maybe you can have an educational page to help those getting a first time port?

Moderators

Dear SandiBeach57,

Thanks for the tip. We will look into it.

The Mods

Leidy222588

Just venting!

Never had a problem with my thyroid until breast cancer. Now have hypothyroidism, which makes me really, really constipated despite medication..So constipated that they decided I needed a colonoscopy. So constipated that I that needed "old school" prep--had to drink a gallon (that's 16 cups) of vile liquid. So vile that I puked twice at the start. They said I had to keep drinking, so I did. Drank it all and then puked four more times, violently. Turns out I have to have another colonoscopy in 6 months because I threw up so much of the prep that my colon was not clean enough for the doctor to see everything. Best part: now have sciatica from PUKING. No joke. Just diagnosed today.

So frustrating. Kinda funny, too.

mara51506

Is there any other way to prep for a colonoscopy besides having to drink that other stuff? Maybe ask your doctor if you have not. My prep was different, I just could not eat for a couple of days and given laxative to clear me out.

Beaverntx

Leidy, glad you can find some humor in such a very frustrating experience. My colonoscopy prep seems to change every time I have one. Next one is due in October this year so we'll see what it will be this time!

LoriCA

SandiBeach I'd be furious too, there's no excuse for not ordering a Power Port for someone who is metastatic and will be getting regular scans!! Veins can become a big issue once you go on "chemo for life".

There's no excuse for hospital staff not using a Power Port when requested too. I don't know if this will make you feel better or worse about not having a Power Port, but my rant is that even though we made sure I did have a Bard Power Port, every single time I get scanned, no matter where I go, they either a) don't have anyone qualified to access a port, or b) won't bring a qualified nurse in because they are positive they won't have a problem accessing my veins even though my MO has told them that my veins are shot from chemo and then spend 20-30 minutes turning me into a pincushion with bruises and blown veins from my elbow to my fingers!

My latest absolute horror story about this topic is posted on PinktoberSucks if anyone wants to read it (I have no affiliation with PinktoberSucks and it's posted anonymously. After I wrote about it briefly here in another thread, a member who helps run the site asked if I'd be willing to write an article about my experience and I agreed because I think it's a topic that needs a wider audience. I hope it's okay to post a link here, but if not Mods feel free to remove) - http://pinktobersucks.com/how-not-to-do-an-mri-brain-scan/

Mominator

SandiBeach, I would have never thought that there was a difference between ports. I'm so sorry you got the wrong one.

Leidy, it seems like some bad dominoes are falling your way: hypothyroidism, constipation, and sciatica! Yikes! I hope everything can be sorted out soon. Maybe another colonoscopy prep can work for you.

LoriCA: I'm so sorry for all they did to you. It is inexcusable that they ignored the form. I suggest that you inform both your MO and the patient advocate for that hospital.

Also, bring a copy of your article with you on your next scan. Tell the next set of techs, if they don't access your port, you'll repost the article with their names on it!

JCSLibrarian

I have a power port, but it is not used for blood draws. My MO says that the constant use of the port will lead to infection. I worry about my veins holding up with the weekly blood draws that are taking place now. I have good veins now, but how long will that last? I do think in my case the blood draws are handled by technicians rather than nurses, so it is cheaper for the infusion center. I have watched some patients have a terrible time getting blood drawn even though the technician is trying hard not to hurt. I need to find out more about this. Thanks for the info

exbrnxgrl

I have had a Bard Power Port for 8 years and it is used for everything! What would be the point in having a power port if not to use it as designed? Infections? Well of course it has to be properly cleaned when accessed but that’s done routinely whether you’re having an infusion or a blood draw!

I think power ports are often not fully utilized simply because they don’t have enough port trained nurses available

mara51506

I don have great veins and have to get my port accessed anytime I have a scan involving contrast at the cancer clinic. The plus side is that scans must be daytime since the cancer clinic only has daytime hours.

LoriCA

exbrnxgrl I am so jealous that you have had your port used for everything! Mine is used for blood draws and infusions, but not once has it been used for contrast media. After that last experience I am going to put my foot down, and I'll likely change where I have some of my scans done. And you are right, it is because there are not enough nurses trained to use them, and there's no excuse for an imaging center or department that deals with a large percentage of cancer patients.

JCS I know there is a small risk of infection but I have never heard that constant use would lead to infection. If you don't use it regularly it has to be accessed and flushed with Heparin every 3 months anyway, so it makes sense to use it when you can. I'm on Herceptin so mine is used every 3 weeks for blood draw and infusions (Herceptin is very harsh on veins; that and multiple rounds of chemo is what trashed my veins). They follow a sterile procedure when accessing it.

Anyway, I can understand putting a regular port in an early stage patient who will typically have the port removed after treatment, but for a metastatic person who will likely need it for the rest of their lives, there is no excuse for not ordering a Power Port. Once you hit the "IV chemo for life" stage a Power Port is a necessity because of the damage chemo does to veins.

Spookiesmom

My port has been in 8 years. I never wanted it out, just in case. I was stage 3, grade 3. During that time I ran into nurses who said they had experience with ports. They didn’t. I’ve learned not to let anybody that isn’t a chemo nurse near it. It was used in my last surgery to administer sedation and fluids.

Now stage 4, port still in place, on ibrance.

Artista928

I agree with many RNs not knowing how to access the port. I go to the infusion center for labs where all of them know how to use the port. But it's a no for scans, abx, etc. Always IV. They say they don't know how or they don't want to risk infection which is the same as don't know how.

GG27

I have a Bard power port & I make them use it for everything.  They don't want to, but I don't have a good arm.  I have to make adjustments like going to medical daycare to have it accessed before a bone scan because they don't have anyone there who can access it, then I go back to medical daycare to have it de-accessed.  I have had to make all these extra appts but now after 5 years they finally put it on my chart to do this, but I still check up on them.

mara51506

My hospital is limited as I refuse to let them use my right arm even after a few years post mastectomy. I have enough health problems without dealing with lymphadema on top of things. I can only do so much juggling to deal with my health and I know lymphadema can show up many many years after mastectomy. Only my sentinel was taken BUT a friend of my mothers got lymphadema 8 years post mastectomy AND only had her sentinel node taken too. Don't even take blood pressure from that arm either.

jaycee49

Exactly, GG27, you have to MAKE them use it. I have had my power port for 5+ years and it is used for everything. LoriCA, you have to be assertive (aggressive) with your providers. My issue was with Pet scans. My Pet scan people wavered. Some would use it, some not. Once, when I ran into one of the non-users, I threatened to leave without the scan. Keep in mind that I go with my port already accessed at my cancer center. They still didn't want to use it. Or I call ahead of time at my imaging center where I get CT's to make sure a nurse who can access my port will be there. If not, I change the appointment. It takes extra planning but it can be done. All this extra stabbing is unacceptable. Talk about risk of infection. My onc nurse told me her hospital has gotten more strict with who can access ports. She, who accesses them multiple times a day, has to be re-certified once a month. She has to fill out a form which includes the time, date, and patient name of the last port she has accessed. If it been more than a month, she will not get certified. Of course, that never happens to her but she says it is a pain and a waste of her time. Maybe that whole process comes from the national level explaining all the problems. She says the once a month thing is pretty recent. Like this year. Or last.

LoriCA, would it be possible to have your port accessed beforehand? That's what I do but my cancer center is in the same hospital complex where I have scans. Then, I have to go back and have it taken out. Worth it to me.

JCSLib, why once a week blood work? I still think the stabbing would be equal risk of infection to port access. I had mine accessed weekly when I first started Herceptin (my choice) before I went to every three weeks.

mara51506

I agree with Jaycee. I have had to be firm and reschedule appointments to make sure they are using my port as well.

JCSLibrarian

Jaycee49 — I have chemo each week for three weeks, then meet with the MO on my off week. Each time three vials of blood are taken for testing. That’s a needle stick each time. When I asked the MO about using the port was when he mentioned infection. I think it has more to do with moving patients efficiently through the appointments and not having to pay a group of nurses. I will ask more about this during my next appointment with the MO.

jaycee49

OK, JCSLib, I'm confused. (Not uncommon.) Do they use your port for the chemo infusions and then NOT the blood draws at the same appointment? That is nuts. My onc nurse (when I was getting chemo) would use the port to get the blood and then keep using it for the chemo. Same access. At least on three of the weeks, that would be no stick for blood. I really hope they are not submitting you to these unnecessary sticks for their convenience. Or cost. That would be ... no (nice) word comes to mind.