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What do you do during infusions?

Primavera's picture
Primavera
Posts: 177
Joined: Mar 2019

If you're icing your hands and feet, what do you do to pass time? I understand there's a few hours of this. The first time I would probably be too worried, thinking and overthinking, worrying about reactions. But when you're not doing this, how do you cope with inactivity? 

LisaPizza's picture
LisaPizza
Posts: 321
Joined: Feb 2018

I watched movies sometimes. A little reading or crosswords or social media. Mostly dozing off and on in between trips to the bathroom or having snacks. You get IV Benadryl, and that makes you sleepy.

 

I was usually there most of the day. Arriving at 8 or 9 ish, until about 3 if I remember correctly. And I didn't even usually have a same day dr appt. Sometimes later (first day was really really long as I had a reaction). Taxol was 3 hours, carbo was 1 hour, plus waiting/logistics/premed time at the beginning. At first they want you to stick around a bit for observation at the end, but that stops once you do fine.

MAbound
Posts: 1063
Joined: Jun 2016

It helped that I had my husband with me to interact with during my infusions, but you won't be able to have that because of the virus, so my vote goes with listening to audio books. Cooling your hands and feet really limits your options and I'm not a big fan of what's on to watch on daytime tv. An audio book can last you long enough for the whole treatment and you won't need use of your hands to change pages. 

Primavera's picture
Primavera
Posts: 177
Joined: Mar 2019

I was never a fan of audiobooks. My mind goes in a million directions and I can never pay attention.

But a minute before I read your advice, I was thinking that audiobooks were my only option. When I walked in NYC, it was the only time I listened to music. Other than that I was always learning something on screen, while doing something else with my hands. On the subway, I read books and/or learned italian. At the job, I worked while watching TV, but it was usually the news, or Italian TV.

TV can't hold my attenton. I fall asleep. Now with the pandemic I started watching Netflix. I didn't even know what it was until my coworkers asked me what kind of world do I live in that I don't know this. They said it would take over my life. It didn't.

Time to get audiobooks. 

 

Armywife's picture
Armywife
Posts: 414
Joined: Feb 2018

Time goes by pretty quickly on infusion day. You're busy getting settled in, then infusion starts and you're managing your ice.  I took a whole tote bag of things to do and never ended up doing any of them.  I got to know my neighbors in the adjoining booths and we talked a lot.  Potty trips.  Talking with the nurses. Little naps. I played with my phone way too much as well - too much social media. (Still guilty of that!) 

els19
Posts: 54
Joined: Jun 2014

With mitts on your hands it limits what you can do. I watched a movie I had downloaded to my iPad. I also listened to my relaxation/healing cds. Audio books sound like a good idea. My infusion goes slow because I had reactions. I'm one of the few people who benydral does not make sleepy. 

Primavera's picture
Primavera
Posts: 177
Joined: Mar 2019

I'm afraid of reactions. I haven't taken any medicine for anything since the 80s. I'm not a health nut, I just never needed any. I almost never got headaches and when I did it was because I needed my morning coffee. I got one or two colds a year and would be rid of them in two days without medicine. 

I'm 58. In the 80s I was still a bit under my family's care if I got a cold, so they would make me have NyQuil for example. Once I realized that NyQuil made me shaky, restless, and keep me up at night, I decided that was it. I never thought about Benadryl not making me drowsy. Who knows if I'm a candidate for that. 

I'll probably be nervous the first time anyway to do anything. I have TV and Netflix on my iPad and I'm subscribed to a lot of online classes, but yes...better keep those hands in mitts. Maybe I'll finally learn to focus on just one thing at a time. I find out about treatment on Tuesday. I am anxious to know, but nervous at the same time. 

LisaPizza's picture
LisaPizza
Posts: 321
Joined: Feb 2018

The Benadryl is in the premeds, so you'll get it even without a reaction. If you're worried about taking it, I'd let them know ahead of tinlme.

Molly110
Posts: 130
Joined: Oct 2019

Primavera, like you I was never able to follow audiobooks as my mind would wander off. That changed for me a few years ago when I realized that if I'd already read a book (or a play or poetry) then I loved listening to it. I now listen to Audible books every night at bedtime. If you have some favorite books, you might want to give listening to them a try during your infusion. As you know by now, if you are given Taxol, the IV that they will give you before your infusion will likely have Benedryl in it and unless you are one of the unusual people like Els who it doesn't make sleepy, you may well sleep through your infusion. I did mine, but only because I trusted my nurse to wake me up to change the mitts and booties. The few times I was awake for more than a few minutes, I was able to swipe my Kindle with my mitts on and therefore able to read. 

Speaking of IV Benedryl, I had a reaction to it that I didn't know in advance some people get -- hallucinations. They were visual hallucinations in red or green on big blank surfaces like walls and windows. I wasn't frightened at all because I knew right away it wasn't real, and when my wonderful chemo nurse came is, she told me it was not a rare side effect. It actually was quite interesting visually, and I was sorry I didn't "see" the designs on the wall during my final two infusions. There's no reason to think you'll have that reaction, but there is nothing to worry about if you do.

Fingers crossed that your appointment on Tuesday goes well.

Primavera's picture
Primavera
Posts: 177
Joined: Mar 2019

I almost never watch TV but was interested in Elena Ferrante's books. So I started watching My Briliant Friend on HBO on my iPad. I was hooked. Then I wanted to read the 4 books, but I just downloaded the first audiobook. I know the story, so I'll be curious about the book and hopefully listening intently. A lot of her books have been made into movies, so I think I'll watch the movie, then download the audiobook. Maybe I'll love audiobooks one day!

I hope I don't fall asleep. I fell asleep during the echocardiogram they just did. I want to be able to change the mitts and booties.

Friends at the office were asking if they should connect through video to keep me company one hour at a time. I told them I didn't want them to see me fall asleep on their screens.

Benadryl. I am a bit afraid of it. After this I'll probably be listing medicine in my reports from now on. I always just wrote "none." I saw there are two things already in the electronic list. Some nausea medication.

I might try to navigate my iPad with my voice.

I'm reading all of your experiences and that gets me better prepared. Monday I get a Savi Scout installed on a lymph node, and I think that's it until chemo day.

Another worry: oncologist told me we were going to try this without a port. I'm freaking out about that now. She said we could always do it later, and I think oh yes...four of these will probably be ok but then I have 12 weekly infusions of Taxol. I think Cindi had that.

MAbound
Posts: 1063
Joined: Jun 2016

I think you could accept no port if your Dr. could give you a decent explanation of his reasoning for trying to go ahead without it. If he doesn't have an answer that sounds reasonable to you, then I think if you want one you should be assertive about getting it. He might have a sound reason, though and should share that with you.

I felt the same way during chemo wondering why my oncologist didn't use the sandwich method of 3 chemo-radiation-3 chemo with me when everyone else seemed to be getting it. His reason was that he felt radiation damage to blood vessels then impedes chemo reaching areas of the body that you want it to get to the most, i.e. the pelvis and vagina, so it was his preference to do radiation after chemo. It made good sense to me, I'm still here, and I didn't have as rough of a time with the end of chemo as some did who finished chemo after radiation, so I have no regrets.

The important thing here is that your doctor should really explain his reasoning to you to either make you comfortable with that plan or to give you the chance to let him know what your preference is under the circumstances. It seems so often that doctors are always in such a hurry that if you don't keep them on their toes, they skip important things like explanations that you really need to get through what you have to do.

Maxster
Posts: 37
Joined: Apr 2020

I was told that the most recent research showed that chemo must be given first for UPSC.  The clinical trial with best results was 6 chemo three weeks apart with brachytherapy on the off weeks for 2-4 treatments.  In my case they decided I needed the full pelvic (there was some disagreement) and I had that after my chemo.  UPSC is sneaky and the chemo is the first line to get any loose cells that may be in the body.  I think her doctor should have told her that.  I was also told that in the sandwich the first three chemo are weaker so you can have the pelvic radiation.  Although my gyn-onc had the sandwich as my treatment plan, I went with the plan of my second opinion from Memorial Sloan Kettering.  This was also in agreement with UW-Madison in Wisconsin where I had my radiation.  So I guess I am saying I agree with your doctor.

Molly110
Posts: 130
Joined: Oct 2019

Primavera, your chemo nurse and/or your chemo tech should be able help you change your mitts and booties on time. My nurse set a timer so that she or the tech could come in and take care of it, since even if you're awake it's a lot to manage on your own. I loved the Benedryl! I hope I didn't make you anxious by mentioning the visual hallucinations -- they were kinda cool, and my nurse knew exactly what it was when it happened, so I never had a moment's anxiety about it. I took Benedryl 50 years ago for allergies, so I know it's been around and used safely for generations.  It is the active ingreidient in many over the counter sleep meds. as well as still widely used for alleergies. In fact, my vet instructed me to give it to my dog for an allergy. 

Like you, I used to write "none" when asked to list meds; during chemo the list became pretty long, and I'm grateful for the various meds that helped me cope with chemo's side effects. 

I agree that you should insist on a port if you want one. If there is a reason why you in particular should not have one, your doctor needs to explain that to you. I was half way through chemo before I got a port, and I was sorry that I didn't get one at the beginning, but my doctor and NP made it clear from the start that it was up to me. 

Good luck with the audiobooks! 

Fridays Child
Posts: 179
Joined: Jul 2019

Hopefully the Benadryl won't bother you.  It makes me a little sleepy but doesn't knock me out, and then the steroids woke me back up!

With that many infusions, yes, I'd ask them why they advise no port.  I had 5 low dose infusions during radiation followed by 6 full dose treatments.  I was not icing - didn't know about it - so I was glad to have my hands free.

Good luck!

 

yetti's picture
yetti
Posts: 16
Joined: May 2019

Passing the time wasn't easy, not a great infusion center , no tv, crappy internet. Over crowded room with old recliners and much older patients all around me, the only space between the chairs fit the iv pole,  was not a good experience, I wish I could of had my treatment at a new high tech infusion location private cubicales with recliner and tv  with curtain around for privacy and extra chair for a family member to visit with me!  there was only 1 bathroom with 1 toilet and sink, that always occupied, by the time I navigated that iv pole around recliners and down the hall I would have already peed my pants,  I then started wearing depends and if I had to pee I would just do it!  And I would have a pair of underware to change into when I was ready to go home!  Pass the time I would bring my Xanax and go to sleep since there was not much else to do!  

 

 

 

LisaPizza's picture
LisaPizza
Posts: 321
Joined: Feb 2018

How awful!

Primavera's picture
Primavera
Posts: 177
Joined: Mar 2019

I hope you're done with your chemo treatments by now and this is in the past.

yetti's picture
yetti
Posts: 16
Joined: May 2019

Yes ! Im finally done with chemo! Had 6 aug 2018 - Nov 2019,,hysterectomy then 3 more chemo, the onc didn't want to communicate as to how many more chemo ! So I got second opinion CTCA. I should have went there at Dx. Had treatment there state of the art facility !

Still NED since April 2019:!

Connie0127
Posts: 14
Joined: Aug 2020

I get my first round of chemo this week and I am nervous. I am told I will be there all day, starting at 7:30 am. What would I need to bring to make myself comfortable?

Connie0127

Maxster
Posts: 37
Joined: Apr 2020

From my experience, I slept through most of it.  The benadryl just knocked me out.  I am thankful for that.  Be sure to ice.  I waited after two infusions before doing my feet and that is where I have my neuropathy.  Just read all the threads.  I just used two plastic bags that were shaped like mitts.  I put ice in one and then my hand in the other.  Used the same bag system with my feet.  This way I was never in contact directly with the ice.  I was able to have someone in the room to change the ice as needed. If you cannot have someone with you, ask the nurses to do this.  Some people are taking ice chests with them and change on their own. I also had a heated lap blanket to keep me warm.  To me medical facilities are always too cold.  I also think they need to keep the temp down for the chemo.   I hope you can have someone with you to do this.  There are also lots of othe suggestions on this board.  You might want to bring snacks.  We were served a lunch but I am not sure about that now with COVID.  If you have books or audio books that can help pass the time.  Good luck to you!  

Molly110
Posts: 130
Joined: Oct 2019

My hopsital infusion center gave me a nice go bag before the first chemo, and I'd already had one from friends. One of the things I found most helpful was a really, really soft plush throw in the second bag that I put over my shoulders.  I also brought my own pillow. My chemo nurse was wonderful about bringing me anything I wanted, but their blankets and pilllows were not soft enough. I brought water and yogurt and cereal bars and fruit -- all the things people said to bring, but I never used any of it. I also brought a Kindle, my computer, and a book of NYT crossword puzzles. Of those, I mostly used my computer during the short amount of time that I was awake. Oh, and my phone, which was how I listened to audiobooks.

Good luck this week, Connie. Everyone is rooting for you!

cmb's picture
cmb
Posts: 528
Joined: Jan 2018

I didn't sleep during my four treatments at the oncology center. All the patients were in one large room that had small TVs by each chair. But no one watched TV. Most just talked quietly with the person who was with them, read or took naps. My sister or a friend would drive me and pick me up, but I actually preferred to be alone, working on my laptop.

But I didn't ice my hands or feet – nor did I see anyone else doing this. I didn't know about icing at the time – but if I had been icing I obviously wouldn't have been able to work as I did. Not sure what I would have done then. However, I didn't develop neuropathy until after the eight and last treatment (which was not the usual carboplatin and taxol).

I had a port, so I made sure to wear a top that could be unzipped easily for the nurse to access it. The room was cool so I wore long-sleeved tops, although the nurses gave you blankets if you wanted them. There were beverages, but no food, so I brought my own food for lunch.

Because I had different chemo drugs for my last four treatments, I had to be in the hospital for three days each time. There, too, I mostly worked, although I did read some books. As others have found – you don't get much rest in a hospital with all the checking the staff does throughout the day and night so I didn't really sleep well until I was home.

els19
Posts: 54
Joined: Jun 2014

Sleeping as much as possible during infusion was the easiest way. I am unusual because benydral makes me restless. But as soon as they realized that, another medication was added to make me relax. I liked taking my own comfy blanket and pillow and made myself as comfortable as possible. I took my MP3 player with music and some relaxation and meditation cds loaded. One, Fight Cancer, had me imagining zapping all those cancer cells!  Watching tv helped too. I'm infused slowly because of a reaction I had, so I'm there all day too, Connie. So, take a light lunch and some snacks just in case although I never ate much. I also take a favorite water bottle. This time I'm icing and it's a bit different. I was focusing on changing my mitts and booties. Either way, it still went fairly fast. Good luck!

yetti's picture
yetti
Posts: 16
Joined: May 2019

I would tell that dr No way. !  You need to be an advocate for your self. You seem to be upset about not having the port for chemo !i understand that completely !  Why do it later. Especially for 12 wkly infusions. tell them you want the port before any chemo before there is no time before your first chemo!  

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