Infusion room question

[Rob in PA]

Sorry so many people also experienced this, but it is nice to know i'm not alone!

I also get the same reaction to Nickles brand white bread. When I was in the hospital for the many surgeries I had , they would bring me a slice of Nickles white bread in a sealed plastic wrapper kind of like its own little bread bag, to go with my meal. It had all the marketing information on it so I knew what brand it was. Now, when we buy bread for our family i can eat any other kind of white bread EXCEPT nickles! Hows that for weird? And I thought all white bread was the same I can even eat Nickles wheat and italian but NOT white.

Bizarre.

[Patience]

This is an interesting topic. [Note: I'm a caregiver]. Years ago, I had some medical issues that required having a hospital-out-patient procedure. Since there were a few choices of facilities, the doctor recommended using a particular one that he figured I'd not be using in the future. He said he did not want me to associate my "usual" first choice hospital with negative afterthoughts, so he avoided spoiling the good thoughts I had about that place by not using it that time. Which leads to: some of your comments bring to thought that it sounds like having the oncologist's office connected to the chemo room might not be 100% perfect.

[katsheba]

I love my chemo nurses and the infusion room is very pleasant....but I get nauseous just thinking about my infusion room. My doc gave me a patch of some anti-nausea medicine that was supposed to be specifically for anticipatory nausea. It didn't really work for me though. Sometimes when I'm feeling really bad I ask for Ativan in my IV. It helps a lot and then I can usually just sleep through the infusion.

[Bev G]

This is particularly interesting for me today. Some of my long time friends here will quickly "get" the context of this, as it's several things that came together. I had to be in my old chemo room today to get my port flushed and my blood drawn. I've been in there way too much since my own chemo as my husband has gotten chemo there for his lymphoma, and although he never once went to chemo with me, I went to each of his infusions with him. Each time I was there with him I felt sicker and sicker (never threw up on my chemo while they were infusing). The worst thing about chemo day for me was getting through the door to go in there. Very, very hard. The old "approach-avoidance" thing.

Once in the room, my view was directly in to the Intensive Care room where my son was in a coma for 3 weeks after an anesthesia accident the year before my cancer diagnosis. He was not expected to live, it was one hospital-induced horror after another, including a 23 minute period when some stupid, incompetent nurse had pulled out his ventilator tube and they couldn't get it re-inserted, all the while he was getting no oxygen. Anyway, having to see that room across the 20' alleyway between buildings every chemo nearly drove me insane. I had, and continue to have, severe PTSD WRT that experience.

Today I was feeling particularly uneasy and queasy being in there. My nurse today (who I didn't remember ever seeing) reminds me she used to be a nurse for the 5FU pump company who responded to my home the day the friggin pump came apart and leaked 5FU everywhere, including on my dog! She came to my house in a HazMat suit! I was so flipped out by that incident, so violated by having my dog, my bed, my home contaminated by this crap! It was really traumatic. One of the more unpleasant experiences of my chemo year. She is a really nice nurse, but I HATED being reminded of that whole incident.

Then my port was clotted off, and I had to wait and wait and wait for them to deal with it (about an hour). I felt more antsy the whole time. There are NO partitions in the room. It's just a big, open sort of cattle-call, and there were 5 other patients in there. While this was happening, my husband was downstairs reviewing his PET/CT from this morning with the Nuclear Radiologist.

So, Steve comes in the chemo room, and announces to me that his cancer has spread "everywhere" and goes on to tell me where the "everywhere" is. I think I sort of went into shock. I start crying (I am not usually much of a crier when I have to go into survival mode) and I can't stop. I am still waiting to get the damn medicine for the clot. The needle is in my chest. I just want to pull it out and get out of there. I am nauseated and panicked. I say to the nurse: Get this needle out of me, I have to leave this room..."No, Bev. We HAVE to get this clot dissolved" I am not as a rule snippy or demanding but I told them to either put the drug in immediately so I could get out of there, or pull the needle so I could go. Then they told me I had to wait 45 minutes after getting the drug!!! OMG. And, I'm still crying about DH's news.

Finally got out, but I now have SO MUCH crap associated with that room, if I do get a recurrence I really think I'll have to get chemo somewhere else. Guess we're moving though, so I would be. Oh, guess I'll be in there with Steve when he gets his one outpatient chemo. Lymphoma chemo is so stupid that they give a 6 hour outpatient infusion of one drug, then insurance here demands that the patient cannot be re-admitted for 48 hours, then come back as an inpatient for 4-5 days for the rest of the "cocktail". So incredibly stupid!! Interestingly, in Vermont, the patient goes from outpatient chemo for the first drug directly to the inpatient unit and is hospitalized immediately for all the rest of the drugs. Uh-oh...something that actually makes sense!

[Rob in PA]

You've had a rough day Bev...here's praying for a better day for you tomorrow.
rob

[Bev G]

You've had a rough day Bev...here's praying for a better day for you tomorrow.
rob

Thanks, pal!

xox

[Icesk8tr]

Bev,
I'm exhausted just reading about all you have been through lately. I hope things get better for you. You deserve a BIG break!
Christine

[mackswife]

My husband started to complain of the "smell" while still in the parking lot, before ever entering the building. 8 months past his last infusion, he still cringes when he see's the lunch containers in our kitchen that I packed his lunch in. I've hidden them under some tea towels. It is of note, that he brought every packed lunch home untouched...was never able to eat anything I packed for him. So, it's just the (really cute) lunch sack that triggers the sick feeling he experienced during treatment. It seems a lot like post traumatic stress syndome to me. Powerful memories of a really challenging time.

Pattie

[kellywin]

Bev - I haven't been on this board long, but I wanted to say I hope you get a break from some of this. I can't imagine what you've gone through. My thoughts are with you.

[Guinevere]

My onc thought I was having anticipatory nausea until she prescribed Protonix (a stomach medicine because I was getting nauseated the day before and then when I was on the way to chemo) and that seems to have alleviated the problem. I still can't watch medical dramas or scenes where the character is in the hospital in a realistic scene. I shake all over and tears well up in my eyes instantly. I can't imagine how I'll react if I'm ever hospitalized again.
Just know you're not alone.
God bless ~
Guinevere

[Staci's team]

Thanks CR Guy, makes sense. I think I'll try taking an Ativan before I go to my next appt. and see if that helps.

Rob, what you're describing is something Staci experienced as well. After about her third infusion, her onc prescribed Ativan for her to take an hour before her arrival, and it did seem to help. Even today, three years out from the end of chemo, there are still times when she gets that same feeling....since at the Cleveland Clinic, the oncologists are located a floor above the infusion area and it's a wide-open design.

You are by no means alone in this feeling....


Chris

[jjlist]

thankfully I haven't had to be infused for almost 3 years now. but when I read your description and look at that pic, it instantly brings back an all to vivid memory. and it makes me shudder.

[DBF]

Glad I came upon this post. I was searching to see whether anyone here had the kind of psychological nausea I've been having. If I think about the infusion room, I experience a kind of wave of nausea. Also, I happened to see on my desk the 5-FU disconnect instructions, and when I saw the picture of the 5-FU pump on the page, I felt nauseated as well. Then, the weirdest thing- my son had a half-deflated balloon- the kind you make animals out of- and when I saw it, the shape of it made me think of my 5-FU bottle, and I got the same wave of nausea! It seems bizarre- I'm wondering if will continue once I'm done with chemo or if I'll have to avoid looking at cylindrical objects forever.

[GreenMonkey]

the brain is so powerful...

I get bitchy. really bitchy. uncharacteristically bitchy. my bitchiness is aimed at the staff if they are too chipper or carefree. during my first visit, as I'm in the chair, with the tourniquet thingy around my arm, waiting for the tec to draw my blood, another tec came in with a happy birthday crown on and they started chatting about the nights celebration. I not so politely, asked the birthday girl to leave and allow my tec to focus on me.

there are more examples of my bitchiness, but for now, i'll leave it be.

[juliej]

Anticipatory nausea is a PITA. Even though my nurses are the nicest caregivers that you can imagine, it doesn't change the fact that my body wants out of there asap. It's like it thinks something very bad is going to happen in there (which is kind of true). The mind has huge power over the body so I try to do "mind over matter" exercises to get through it, but Ativan works too.