what to take to chemo treatments?

Sue_w

Ok so here is my question, I've had my mastectomy (healing well, thankyou), and now I'm about to start Chemo shortly, what do I take with me on the day?
I've seen suggestions for 'chemo packs' and some seems practical and some seems over the top. If you've been through chemo, what did you find important to have with you? What could you have done without? What were you given that you were grateful for?
I know lots of questions, but you should see the ones still swimming around in my head!
Thanks in advance
Sue

Locksley

Hello
Welcome to the club no-one wants to join.  I'm not sure if you had a Port or not.   Clothes with front zips for easy removal helps for treatment.  I found twinnings ginger and lemon tea and bickfords barley lemon cordial good to drink the days after chemo to help flush out the chemo.  I needed something extra from all the water.

During chemo I put my hands in rubber gloves and in jugs of ice and feet in socks.with ice.packs to help prevent P.n
In hands and feet.  I have some PN now but I feel it would have been worse with out it.
A warm blanket during treatment and then at home after was good too.  

Phone or tablet or music to pass the time helps.  Wishing you all the best.

Locksley

Some lip balm was good too.  Some people sucked on ice chips to prevent mouth ulcers.  I got mouth ulcers so bonjella was in my bag.

Sue_w

Hi @Locksley, yeah it's a club I could have done without joining! I haven't heard of the ice water and icepacks for PN before. I'm not going to use the coldcap because I get migraines and they are sometimes triggered by getting really cold. Having my head at 3 degrees for hours on end sounds like torcher to me. Think I can do the hands and feet though.
I should be getting a port in this week, just waiting for a call from the surgeon as I start Chemo on the 24th. Definitely will be taking a soft cuddly blanket. 
Thanks for the tips   

Locksley

Half an hour before your port is accessed put some numbing cream on it.  It helps.  Nurses should give you some.

Mazbeth

Hi @Sue_w great to hear you are recovering from the surgery. I am thinking that you will want something to ‘do’ while you are having chemo as you may not be allowed a support person. I was allowed to have someone so I didn’t really need anything. However, I downloaded some TV shows/movies on my iPad and I had some books etc just in case. If you are going to use the cold cap, you will be there longer so you may want something to do. The hospital will have snacks and things, but again, you may want to take something if you want something specific. I really hooked into fruit tingles all through chemo. I was given a care pack from the chicks in pink and it had some things in there which were great over the whole treatment process - lip balm, biotene mouthwash, journal, fruit tingles, movicol  etc. I found I got cold so don’t forget to ask for one of the warmed blankets if you are feeling cool. Wear something comfortable so you can lie back in the recliner if you want to rest. I iced my hands and feet during taxol so that’s when I took a few more things, but for the 4 X AC I travelled very light. The medical staff are excellent and will really look after you. As I said, I didn’t really take anything to an actual treatment, but I can definitely confirm I always wanted something to eat on the way home. You will most likely be given steroids and I found they made me hungry. Depending on what you like, you may want to just have somethings on your phone - podcasts, games etc. Take care 🌼

Abbydog

Dear Sue,
I didn't do or take a lot with me. I took my phone and Kindle.
I had the Infusaport and are with Locksley re a front opening top,
When I had Epirubicin and Cyclophosphamide, my Chemo suite provided Ice blocks to suck on as it was infused.
The cold temperature helps prevent mouth ulcers. I didn't have any. But some Bonjela or similar could be handy.
My Chemo suite provided snacks, sandwiches and drinks. But take your own if you would be happier.
Put the things you want within reach before Chemo starts. It's hard to move after it is started.
I wasn't allowed anyone with me due to Covid. If you are allowed someone, this wouldn't be an issue.
I experienced constipation, and used Coloxyl, for the few days immediately after each of these infusions.
Have you considered the Cold Cap? To attempt to save your hair. I had a great result, I was lucky.
Ask your Chemo suite if you are interested, prior to starting.
Try to stay positive. Everyone's experience is different. 
I consider myself quite lucky, no serious problems.
I did have side effects, but they were all manageable.  No nausea. Not like in the movies.
Should you be unlucky, report all to the nurses and your Oncologist. They may have advice or drugs to help.
Some of the other ladies here have been less fortunate and do have good advice.

Sue_w

Hi @Mazbeth and @Abbydog, I'm not allowed to take anyone with me due to covid. Luckily I could take my husband to the first oncologist visit but had to do all of the surgery and hospital stay on my own. No complaints though as the hospital staff were just lovely.
I'm not doing the cold cap as I get migraines and one of the triggers is getting really cold. Last thing I want is nausea and a 3 day migraine at the same time!
I've heard fruit tingles mentioned a few times so I'll get some for sure, as well as the ginger and lemon tea (for after). I have a kindle with loads of books downloaded to take with me. I thought I'd need it for my surgery stay but ended up leaving the hospital pretty quickly due to a covid case at a nearby hospital. They cleared as many of us out as they could in case they needed the beds for people being shuffled around.
Thanks for all the good ideas, some things I have already and some I still need to get.
These replys are going to help a lot of us newbies! 

Cath62

Hi @Sue_w,

All the ladies have given great advice. My tip was to drink lots of water both before and after to help flush it all through. I also walked before chemo too. Actually did a gentle walk most days during treatment and it helped me with the fatigue.

I was pretty fortunate as not too many side effects. I never got sick but fatigue and some moodiness was hard at times. I really spent a bit of time on mouth care. I flossed religiously after every meal and rinsed and gargled with salty water. It meant no mouth ulcers for me but it was constant care every time I ate. 

Treat yourself to what food you enjoy as some people get a funny taste from chemo but watch out for spicy food. It didn't go well for me.

Also watch the sun as chemo can affect the skin so make sure if you spend time outside that you wear sunscreen and a hat.

Good luck with it. Sending you best wishes 🌻

Sue_w

All good points, thank you @Cath62
Thank you everyone, I feel a lot more at ease now, a lot less anxious about starting Chemo.

Love and hugs to you all XXX

arpie

Hi @Sue_w

With a Port, putting a zip (or 2) into your 'chemo top' will make for easier access ... if you enjoy sewing, you could do your own or they are available online.
.         

Open for setting up & half closed for infusion


I double @Locksley & @Mazbeth's suggestion of the warm blankets .... our Onc ward is quite cold, even in the middle of summer!  I put one on Hubby on Wed.

Hubby mainly enjoys doing Word Puzzles during his chemo - or just nods off.  It is hard to concentrate on a book as there are so many interruptions - so magazines are good too.  Take your own, in case they are no longer supplying them, due to Covid.  Take your earplugs for your favourite music too .... or audiobooks ....

I definitely get hubby to drink heaps of water before and after the treatment to wash it all out quicker ... he has very few side effects and has never been nauseous or had ulcers etc - just mainly very tired a few days after - and watch out for peeling hands/feet tho .... Moogoo is good, also pawpaw ointment.

All the best and take care xx

Afraser

Just another take - I took a book. Full stop. I was never cold, day oncology supplied sandwiches and drinks, I didn’t have a port so just needed to make sure I wasn’t wearing anything with a tight sleeve. I worked through chemo so my main aim was in and out at a reasonably fast rate! Everyone does it differently. But go to the toilet just before you start! I had to go
mid infusion, and sprang a leak in the toilet - chemo, not me (faulty connection!). Bit of drama brightened up the hour for everyone but not seriously recommended! Best wishes. 

noosa_blue150

Just a reminder -,if you’re going to,use fruit tingles or any lollies to help with dry mouth or other issues don’t forget to be very diligent with your brushing your teeth as well ( my dentist warned me about effect of extra sugar on teeth during chemo,and this was his reaction when I said I  found eucalyptus lollies were helping ) 

bookworm

Hi @Sue_w

I have finished chemo but still attend oncology for targeted treatment.

My Oncology unit is comfortable and provids blankets,
tea/coffee/drinks and snacks. I get cold at times so a blanket or
throw is a good idea if one is not supplied.

I mostly read a book
and take a nap if needed. My go to snack are mandarins.

As others have said,
drink lots of water and go to the loo when you need to so you can
flush your bladder.

I always walked
after treatment. Even if sometimes it was only a small walk. I found
that being out in the fresh air helped make me feel a bit better and
was a good way to end my treatment day.

Brush your teeth
regularly with a soft brush and I used a bi-carb soda mouth wash. I
did not get any mouth ulcers.

I have a portacath so I wear a button up shirts to help with access. Great idea
from @arpie to put zippers in tops!

arpie

Have you started the chemo, @Sue_w?  How are you going with it?  The staff are usually amazing.  Very caring.

We noticed a pattern with hubby after his first sessions .... he was fine for 3-4 days afterwards, then would out himself to bed for a day or so ... then fine again!  He has been lucky with no nausea and very fe side effects too. 

Take care, all the best xx

Sue_w

Hi @arpie, I was supposed to start chemo two weeks ago but got a fever and rash (no broken skin or itch, just red and hot), at the site of the mastectomy. I also have a seroma on the upper side of my chest near my armpit. My post mastectomy bra is very tight there and I usually only wear it while exercising. The day before my fever, I didn't take it off until night time and then had trouble sleeping that night because my arm/side was aching. The next day I developed a fever. My doc sent me to emergency and I ended up on two courses of antibiotics. Given that no one could say what caused the fever or rash, I asked the my surgeon if the bra could have aggravated the seroma and lymphatic drainage, he said maybe, don't wear the bra unless you have to. 
This Monday I get a port put in and start chemo on Tuesday. I know it sounds strange but the Chemo worries me more than the mastectomy did. Told my hubby, 'The Chemo makes it real'
He said, 'I would have thought getting a boob removed made it real!'
I have 4 sessions of AC (one a fortnight) and 4 of Paclitaxel, so 16weeks and then radiation and hormone blockers.

I hope your hubby and yourself are travelling well.  xx