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Must-haves for chemo
ShazLou
Member Posts: 9 ✭
Hi all. I am about to start chemotherapy next week, fortnightly for 8 weeks and then weekly for 12. There is SOOOOOOOOOO much out there about what it will be like, what the side effects will be, what to expect... but then it is also so much to navigate when one's head is already full!
I was wondering if anyone had some very basic recommendations of things that are 'must-haves' or was a 'go-to' for them when they went through therapy. I know that everyone responds differently and everyone would have different experiences, but I guess I want to at least start with a shortlist of items that I can have on hand in preparation for the first few rounds.
Haha am I even making any sense
Thanks in advance
I was wondering if anyone had some very basic recommendations of things that are 'must-haves' or was a 'go-to' for them when they went through therapy. I know that everyone responds differently and everyone would have different experiences, but I guess I want to at least start with a shortlist of items that I can have on hand in preparation for the first few rounds.
Haha am I even making any sense
Thanks in advance
Tagged:
1
Comments
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Hi @ShazLou,
I had chemo in 2020 and I did pretty well with it but as you are probably aware we are all different and respond differently. So the way I got through it was with the following:
# Lots of water especially the day before and the days after,
# juice to help my liver process the drugs - beetroot, celery, ginger, carrot and berries for sweetness. I just blended it all together because i like the pulp. Lots of recipes for it online,
# cook a few meals and freeze for days you don't want to cook,
# accept help from anyone
# dealing with hair - you can cold cap to keep it but it adds alot of time to treatment. It's an individual decision but I shaved my head, well I took it down to a number 1 blade. Hair starts falling out about day 17,
# take care of your skin. I used moogoo as I figured I had enough chemicals and it had none,
# Oral hygiene- incredibly important to floss and gargle with salty water after eating to avoid mouth ulcers. I was really strict about this and never got any mouth issues,
# take a friend or a book as it all takes time,
# don't suffer with nausea if you get it so take the pills if you feel nauseous. I only had nausea twice.
# rest when you need to. They tend to give steroids with chemo and this can give you alot of energy for a couple of days but then there is a crash after that and you feel tired. I took steroids the first couple rounds and then when I knew Mt body was handling it, I went off them after discussing with my oncologist,
# the other thing I did and it may sound weird but as the chemo was administered I use to imagine it as a golden light healing me, killing the cancer but not impacting the other cells,
# put yourself first - be very kind to yourself.
Best wishes6 -
Hi @ShazLou
I took my ipad / tablet with me to treatment, it was great as it kept me occupied and distracted during my treatments. I found that I couldn't really read a book as there was a lot going on around me plus they brain fog! I had free WiFi at the hospital so I streamed tv shows, played games, emailed etc etc,
@Cath62 has some great suggestions above! I found qigong has helped me a lot through my treatment. Look good feel better have some online sessions (lgfb.org.au).
Try to treat yourself each day, even something small like a nice soap, cake, walk in the sun, etc etc,
Best wishes for next week.4 -
During all my chemo sessions with AC and Taxol, I was on my phone browsing through YouTube. I also observed my surroundings and sometimes watched TV. My approach was similar to @Cath62's: I focused only on the thought that the chemo was killing the cancer. Whether it was weird or not, it helped me get through. I also agree with all the points that Cath62 listed. I managed all the side effects as recommended in the booklet Understanding Chemotherapy (cancer.org.au)
and in consultation with McGrath nurses. Today, they provide us with so many medications to manage side effects, and I used everything that helped me go through chemo comfortably (only in consultation with my oncologist). All the best to all, and ShazLou, Yes, you are making sense, as many of us on this network do. I have never seen such sensible people in my life before joining this network. What does not make any sense to me is Cancer.
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I used Sorbolene throughout, my skin was very dry without it. For some reason Moogoo didn't like me during chemo, although I'm happily using it again now 🤷♀️
Biotene mouthwash was great, I got a very dry mouth at night, and I used it as much as I needed to.
I drank lots of water with ice, I didn't get any weird taste, but cordial can help with that.
I cut my hair short and then buzz cut it to a 1 once it started falling out as it helped reduce the tendernes you get for a few days from it coming out. I also used coconut oil on my scalp.
All the best with your treatment 🙂1 -
Great advice from all the ladies. I didn't stress over what to eat. I ate what I felt like and that changed a bit. I did crave a salty potato cake after treatment and I gave into this. I figured with all I was dealing with I'm having what I want. I would try to just get through the session as best as I could. I was happy having a warm blanket over me. The staff were very helpful if I needed anything.
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My chemo suite nurse prepared me well.
I was given EVI Q sheets re each drug I would be given.
These are available on the internet. They are from NSW Health
Be aware of the side effects, but you won't get everything.
Report anything to your Medical team. They usually have suggestions ie drugs or other tips.
I had very little side effects, and they were all manageable.
I did buy Coloxyl as recommended. My first Chemo (I had EC, you may be having AC, similar)
I did need to treat constipation for the first 2 days after the Infusions.
I had no nausea, and ate what I wanted. The Dexamethasone they give you with Chemo, can give you a healthy appetite. It can also make you a bit restless at night.
Consider claiming on Income Protection Insurance, if you have it. It could be in your Superannuation.
If you have IP, put your claim in promptly. As there can be a waiting period.
Also consider using the Cold Cap, to save your hair.
I had great success, I thinned only a little where the cap did not fit well.
Good luck. You can't know until you have started, how you will be.
I hope that you are as lucky as I was.3 -
Hi @ShazLou
there’s some good suggestions already!
I had a few issues with mouth ulcers, diarrhoea and some skin irritation on my feet.
Suggest a packet of gastro-stop and someone mentioned Biotene already - use it because it helps to lubricate a dry month. I had to get a soft bamboo tooth brush because the electric wasn’t great with the sore mouth.
Someone gave me some soft fluffy slide on scuffs which helped with my sore feet.I also signed up for the oncology physiotherapist program at my hospital.When I lost my hair I found a night cap made of a thin t shirt style material was great for keeping my head warm in winter.3 -
Eye drops for dry/sensitive eyes & shea body butter & rosehip oil were the winners for me. There's some free online exercise programs on Youtube from Sloan Kettering hospital that are great for maintaining a feeling of strength through treatment that I used when I felt up to it. Best of luck
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These are fantastic recommendations! Having just started chemo last week, I felt ok up until yesterday (day 5) where I felt totally awful. And this morning, I've woken up quite emotional. A bit of a roller-coaster ride is in store 🥴5
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Thank you everyone so much for your recommendations and shared stories. I really appreciate the knowledge and strategies, and am trying really hard to get on the front foot re adverse reactions. I experienced some nausea in the first few days, and just took a tablet or found chewing on gum or sucking on an ice block helped with that. Terribly washed out on Day 3 and 4 but thankful to feel a little bit more normal by Day 6. The worst part for me has been an internal shake/tremor that is now easing, but was terrible for the most part of the week.
Anyway, thanks again.
I hope everyone is doing well in their journey x1 -
Hi @ShazLou
Glad to hear you are on the front foot!
I found days 4-6 were my worst on the AC chemo. Definitely mention the shaking to your team to see if they can recommend anything to ease or stop it. I had a lot of side effects from the steroids and we were able to tweak the dose on the recommendation of my oncologist. You'll get into your own pattern of your chemo cycles and be able to recognise your good and bad days and be able to work with them.
I'm 2 weeks post radiation and I'm starting to feel more like my old self! I have also started hormone therapy now too.
Best wishes for your treatment moving forward.....it's a long haul and can feel daunting when you're in the thick of it but it seems each stage is not quite as bad as the last and you will get through it!3 -
Thank you @Coastiejas! I appreciate your advice reflecting your own experience. Yes, my worst days were similar on Day 4-6, and I am hopeful there will be a little bit of a pattern to it, so as you say, I can almost 'prepare' for it. Nice to feel a little bit human right now! I am not sure how this will feel when I have to go to weekly does
I am so glad to hear that you are starting to feel like your old self and that there is definitely a light at the end of the tunnel... even though it's 20 weeks away! I am just trying to take it one day at a time and just deal with what is in front of me. It is truly inspiring to read your story and others to know that all these brave warriors have stepped before and fought bravely and have come out strong. Enjoy feeling more and more like yourself and hope the hormone therapy does not have too many adverse affects.
Have a beautiful week!0 -
Great to hear you’re managing as well
as can be @ShazLou and I do hope the after effects settle soon for you @Joleystub I found my side effects varied from one treatment to the next at first. Sending you lots of virtual good vibes for the weeks ahead 🌸🌼🌻
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Something really small that i found helped is to use hankies and NOT to use tissues if you need to cry/wipe your eyes. Once you lose your eyelashes, the 'dust' on tissues can be irritating.
A bigger issue was with loss of hair and wigs. I found i hated them all. It wasn't until my eyebrows grew back that I realised that was the problem. So maybe learn to use those temporary eyebrow tattoos.3
