Hi everyone. I’ve got that “it’s 3am but my brain won’t stop” problem tonight. I thought I’d do something useful like pop on here to ask people for their chemo tips
- what do/did you find useful to take to hospital when you had your treatment?
- anything that eased/helped manage side effects?
- best headwear/scarf tips?
- good products for skincare if your skin got sensitive?
- basically anything you wish you’d known earlier or anything that helps you feel even just slightly better at any point?
I think I’m fearing the unknown with all this again - I remember feeling this before surgery and keep reminding myself that I got through it okay but everything seems worse at night when I can’t sleep and it’s easy to spiral into panic.
Thank you for reading my post 😊
Beth x
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I take in my own food, it is a long day. I also take a book. I am trying to be organised so I have started to look online during chemo sessions for Christmas presents. I also like to take crosswords etc.
I do get constipated, I am still learning the best way to combat that. I am going to try prune juice. I was given laxatives, however, I need something else to help. I am given anti sickness and steroids to take for a couple of days after the chemo.
For chemo headwear I got mine from Amazon. They are already styled.
I so know what you are going through in the night time. I was awake during last night. It is natural to worry. What I like about this forum is I can type about my fears and worries and know l have got support. Everyone understands what you are going through here.
Thank you Beth. It is so helpful to have this space to share and feel like other people get it. Good idea with the Christmas shopping! Hope you’re doing well and feeling okay xx
Hi there, good to get organised for chemo. I took a book and also some puzzle books to keep me occupied. If you have an iPad you could upload a film.Good luck with the chemo
Thank you for replying, it’s so good to read all the responses and I’m feeling like I can prepare myself a bit better for definite. Hope all is good with you xx
I took crosswords, a book and a magazine with me just for a bit of variety. I was lucky enough to meet some lovely people and quite often just talked my way through the treatment day.
I used the cold cap and saved my hair, it did add extra time onto my treatment however it was worth it especially because of my daughter who was 11.
I would also recommend bringing a couple of snacks with you. My centre do provide sandwiches and soup but it's nice to have a couple of extra bits with you.
Hi Beth, agree that everything is amplified in the wee small hours but you’ve done step one so give yourself a pat on the back. I had an array of things in my chemo bag and some things changed with each cycle. My unit was chilly in the morning but sweltering in the afternoon so a small rechargeable fan was a godsend. I downloaded stuff onto a tablet and plugged myself in after the Piriton nap (you’ll get anti histamines as part of your pre meds) as I found my brain wasn’t always up for reading. I took a drinking bottle so could have a decent sized drink and also some of those squeezy cordials as the hospital stuff set my teeth on edge. I was also a princess and took slippers/flip flops with me as I just didn’t like having my shoes on the chairs and I was also up and down like a yo-yo to the loo!
I was lucky and didn’t have any skin issues, my head was a bit sore when my hair started falling out but that went once I’d shaved my hair off. I did get a wig but wore scarves more or nothing, ended up being much braver than I thought with it. Wig wise, the hospital didn’t have anything I liked so they ordered me one I did like and I was able to offset my voucher and pay the difference
I also kept a log of each cycle (I’m a bit of an oddball like that) and noted down things like any constipation, diarrhoea, nausea and such like-they’ll ask you at your next cycle what side effects you’ve had and it helped me remember and see a pattern and also any additional drugs I took.
Take any anti nausea and such like offered and don’t be scared to say if something doesn’t work, they really do want you to feel as well as you can during treatment. Also, when they say take your steroids before a certain time…do it, those buggers really do keep you up all night otherwise.
If you’ve got a Maggie’s nearby then do go, they’re lovely places and most hols the LGFB workshops which was good at things like where to put your eyebrows when you don’t have a hairline 😁 AND the goody bag was insane.
You’re probably asleep now so maybe you can use my post for your insomnia too!!! Xx
Drink a lot of water before during and after. It helps to flush your kidneys and liver. Stay away from sugary drinks. Don’t think you can be tough and not drink the nausea meds. Just take it preventatively the first 2 days after chemo and avoid feeling sick
Walk as much as you can
I always took a book but ended up reading social media on my phone and falling asleep with the anti histamine. I was dosing most of my sessions.
Get a good mouth wash and be religious with mouth hygiene. If you can prevent mouth sores it is better than having to deal with them.
Be kind to yourself and give yourself the needed time to recover. The first 2 days after chemo is the worse. Day 3 is not great either. But then you start to feel better.
Eat nutritious rich foods. This will support your body to deal with the chemo better.
Again. Try and walk as soon as you can. At least start on day 3 after chemo. It doesn’t have to be far and fast. But walk outside and soak up nature and sun (but D really NB). Moving is a wonder drug.
I found I was not able to concentrate and read for quite some time so I indulge in watching some series and not feel guilty.
I also liked to prepare some good healthy meals before the time so I did not have to worry about cooking those first few days.
Ditto to all of the above. I was taken by surprise at the ‘Piriton nap’ but I did enjoy it. Whether or not you use what you take does not really matter, sometimes people are really chatty, sometimes it fairly quiet. I would say take anti sickness meds absolutely on time, I missed one at the beginning and paid for it. Never miss them now! I suffered from neuropathy in my feet, it wasn’t nice but I still walked as much as possible and the nerve endings do recover a short time after the chemo stops. For a dry mouth I was advised fruit pastilles/jellies and I also heard tinned pineapple is good. You’re brave because you are facing it head on - try not to worry - you can do it! 👏🏻👏🏻
I second the above. I am still running my company and so took my laptop with me but ended up napping most of the time. The food supplied was more than enough but I would take a cardigan in case you feel chilly. When I was having chemo they were still keeping all the windows open.My one tip….If you are sick after chemo ASK them to change the anti sickness pills. The nurse told me I would feel rough days 3-5 and I was unable to get out of bed for 2 days - I accepted that as inevitable- but when I said it to the oncologist on the follow up call she said that these days you don’t have to accept that TELL US and we will change the pills. Since those first days I have been absolutely fine. (You know what I mean!) So if you feel rough don’t put up with it - call them straight away.
Thanks Terri. I really appreciate everyone taking time to reply, it’s really helping me (again at 3am!!) to read through all the experiences and advice. Hope you’re okay xx
Hi BethI've just finished my second lot of carbo/ taxol. It always affected my taste not just during chemo but throughout regime so used spearmint chews or sherbet lemons as I could taste these.
I always took biscuits and a few treats in with me and manicured my nails and used some nice hand cream.
Insight timer is a good app for sleep, relaxation and minfullness and it made me quite chilled out during treatment but also at night.
I used PHB ethical beauty organic she's butter and mango body cream and for my bald head in light wellness calendula and damask rise soothing balm which smells gorgeous and I got from The Treatment Bag company.
Wishing you all the best what keep me going was knowing that after the first week it always gets better xxxxx
Thank you - hope you’re doing okay, I just wish I could fast forward this bit, I’m really worried about my kids seeing me struggle. I’ll definitely look up those. Body creams and balms. Hope you’re doing okay, take care xx
I e your feet and hands for the 3 hours they give you the one drugI have had Carbo/ Taxol twice in 2 years.
It has helped lessen the neuropathy. Everyone I talk to says the same thing. I wear socks and then use an Ace bandage to wrap 1 big ziplock baggie filled with ice. Around the tops of each foot. And hands.
Hi I finished my chemo in June and looking back now I think it was much easier to deal with than I had imagined. I had a reaction to my first cycle but this was quickly sorted out and the infusions given more slowly so I used to spend around 8 hours in the chemo suite! I took a book, read social media and also listened to music and also had a chat sometimes, the day never seemed to drag. My hospital had a food/ drinks trolley that came around twice but I usually took my own breakfast and a sandwich in. I found I couldn’t sleep for a couple of nights after chemo probably due to the steroids, days 4-6 were my worst for achy bones but once that passed I usually felt okay. My worst side effect was constipation so I took laxido and a couple of senna at night as anything else I tried didn’t work ! I took the anti sickness meds and never had an issue with sickness and had a normal appetite although I found water had a funny taste! Oh also hospital advised to use a soft toothbrush to help with mouth sores and I didn’t get any. Sorry for long post 🙄 !! Good luck with your chemo xx
I learned that there is a Circulating Tumor Cell Test that I would have liked to get prior to getting chemo which I will put a separate post about. Also I learned early on that a lot of the pre-meds are what actually give you side effects the day of treatment….not the chemo. For example on top of anti nausea meds, heart burn, meds, steroids and blood thinner for pre-meds they will probably try to give you 25mg of Benadryl intravenously….”in case” you have an allergic reaction. The problem is that amount of Benadryl through an IV is what actually makes everyone feel so out of it and tired, drained, or loopy the day of treatment. As you walk around any cancer treatment center most people are actually knocked out and feeling weird from the high dose Benadryl hitting their system not the chemo. Chemo side effects actually don’t hit usually until a few days later when the steroids wear off. I had them cut my Benadryl dose in half since the first treatment and that enabled me to walk around and not feel out of it. After round 2 they can actually switch you to a non-drowsy Claritin if they are still worried about allergic reaction… plus you are pumped with steroids so they work better for an extreme allergic reaction anyway. Therefore the Benadryl isn’t always necessary. It may not seem that important but walking away from treatment day not feeling groggy and drained actually helps a lot mentally.
Other recommendation would be to help avoid nausea…. try water only fasting for at least 16-24hours prior to treatment and don’t eat during treatment. This shuts your stomach digestion down and therefore you won’t take in as much chemo in your stomach since blood isn’t flowing there to digest food. I saw a study about It and tried it and it worked for me. I did not get nauseous or take one single anti-nausea med at home. If you do get nauseous I would recommend THC it is the most natural and doesn’t constipate you. Also I actually did an enema the next few days after every treatment to get things cleared out. Its all the meds and crap sitting in your stomach that are causing the nausea…you need to get them out to start feeling better.
Thanks very much for replying - this is all really interesting, I’ll definitely chat with my nurse about this stuff when I see her next before my chemo. Hope you’re okay xx
Thank you SophieZ for sharing your experiences with OrdinarySoul and the forum community.
I just wanted to say that it’s really important for anybody considering fasting or enemas to speak with a member of their clinical team for guidance, as these may not be suitable approaches for everyone.
In addition, THC (Tetrahydrocannabinol - the main psychoactive component in cannabis) is not currently legal in the U.K.
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Thank you for replying. I’m so sorry to hear of your recurrence, it’s just so rubbish all of this for all of us isn’t it. I’m grateful that people are sharing, it’s good to have some idea of how this goes for others. Wishing you all the best xx
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