What do you do during infusions?

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.

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 said:

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. 

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.

yetti said:

Passing the time during chemo

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!  

 

 

 

How awful!

Primavera said:

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. 

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 said:

Yes!

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.

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! 

MAbound said:

Why?

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.

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.

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.