What you wish you knew before you started chemo

Hi there,
I am due to start chemo in a couple of weeks following a regional recurrence (Mx two years ago).
My questions is for the people who have been through chemo what do you wish you knew now that you didn’t then and how best do you prepare for it? I am planning to try the cold cap any advice on this too? Thanks all!

A couple of tips that I found useful
I always made sure I had lip balm for dry lips , it might sound like a small thing, but every bit of comfort helps.
I also found that fresh pineapple was good for mouth ulcers and bad taste in the mouth. Apparently you can also use chunks or juice , but fresh is preferred.

One other thing is that I cut off all of my hair before it fell out, as a show of strength against the cancer, obviously you can feel pretty hopeless when going through everything, but deciding when I would lose my hair made me feel a lot better. I considered the whole experience as a fight and to get that one victory was so uplifting for me

Doug x


Thanks for your advice, so very helpful. I am going to try the cold cap as the losing hair is the worst thing about this for me. Not sure if it will work but I will give it a try! X

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Absolutely agree with the chop your hair before it gets to you response. My observation of cold caps is that they rarely work and involve the patient in a lot of extra suffering to end up with wisps of hair. But you must choose what you feel works for you. I preferred to take control and got some wigs and hats organised and therefore felt prepared.

I wasn’t aware of the likely cycle of treatment, i.e. the after effects don’t hit you at once and usually kick in after 3/4 days. Then the following week you go in to an up phase so that’s the time time to do the things you enjoy. Fruit drinks are vital for hydration and to remove the metallic taste that comes with chemo and pineapple was also a favourite of mine. I found it helpful to put all my make-up on before treatment and arrive looking as smart as I could manage. It did me good and was more easy on the eye for others! Now is the time to use or borrow some Airpods. I got through quite a few podcasts which were distracting.

Different treatments take differing lengths of time which can be problematic for transport so I used to ask at the end of one treatment the likely timetable of the next.

I was a bit taken aback when some of my toenails fell out as I hadn’t been warned. My hands became very dry so hand cream was useful and fruit sweets to suck. You will soon get in to a rhythm and although nobody would describe chemo as a pleasant experience, I would say it was much easier than I had anticipated. Its the old one foot infront of the other method - just plod on and before you know it you’ll be at the end.

Wishing you good luck and a safe journey.


I used the cold cap because i couldn’t bear the thought of being bald. I estimate i lost about 50% but certainly didnt look bald. It extends the duration of your appointments because it is fitted before treatment starts and stays on for a while afterwards. My nurses were very good at keeping me wrapped up with extra blankets so only my head really felt cold. Take some paracetamol beforehand to ward off headaches and taken a towel turban or towel as your hair will be wet afterwards.
Im starting chemotherapy next week for secondary breast cancer and i plan to use the cold cap again. I have a feeling it might not work so well 2nd time around but i cant not try.
I hope it works for you and best wishes for your treatment x

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Thanks all…great advice will try the cold cap as I am same about losing hair would go through way more pain to avoid it as for me I feel it’s such a robbery of your identity. Some people can really rock that look but I am not one of them. I also can’t bear the thought of a wig either so it’s the thing I am most afraid of right now. Honestly feel like the mastectomy and recon was a walk in the park comparing to this next phase. But getting all of the tips and tricks beforehand is a huge help to managing expectations and tips for an easier time! Thank you x

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That cold caps do work and you don’t have to cut your hair unless it is really long. The weight can pull at the roots causing more hair loss.

I had 12 weekly Paclitaxel which had a high probability that I would lose my hair. I researched cold cap with Paxman and www.cancerhaircare.co.uk

Depending on your chemotherapy regime the likelihood of keeping your hair differs. Paxman have a calculator on their cold cap website that you can input your regime and it gives outcomes. Scalp Cooling Outcomes Calculator - Coldcap

I cut my hair into a Pixie cut and had some shedding and two patches above my ears, probably from the arms of my glasses as I wasn’t told to wear them on top of the cold cap! After steroids and weight gain I don’t look like myself, I wish I’d kept my short bob. The cancer centre leaflets suggested cutting your hair short, I wish I’d found the above website before.

Also steroids make you wired and can’t sleep!

Book www.lookgoodfeelbetter.co.uk as early as you can. The information about haircare, skincare and nails is fantastic.

Take care and I wish you well with your treatment :smiling_face_with_three_hearts:

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Thank you for the great advice

Just thought I’d chip in! It’s worth looking at the paxman website for how to properly fit your cold cap, also take a spray in conditioner and /or water spray to spray on your hair before you put on the cold cap as apparently the water helps to make the cold cap more effective. I’ve used cold cap and kept loads of my hair after 4 chemos (3 weekly cycles).
I found that I have still lost hair so after 1st chemo I got a pixie cut (love it,.never going back to long hair now :grin:) because the top of my scalp was painful and getting the weight off worked. But listen to your body and what you need. Also taking 2 paracetamol just before your chemo takes the edge off the cold cap being cold for the first 30 mins or so.
I’ve stayed much more active in chemo than I thought possible and still going running, the fatigue hasn’t been as bad as I expected.
Cereve hand cream is a great hand cream for dry hands too! Biotene toothpaste is good if you get a dry mouth.
There’s also a website called Little Lifts, you can apply to them for a free box of chemo goodies and it’s amazing! :heart_eyes: So recommend looking them up.
I remember before my first chemo I was terrified, thinking I would have awful side effects etc but it hasn’t been as bad as I expected. Once I get over the first 4-5 days after chemo I start to perk up and can even enjoy myself before the next chemo, so I think the main thing I’d wish I’d known was that (if you have it every 3 weeks) that I wouldn’t feel ill all the time and could enjoy myself between chemos (i.e. going out for meals and such like).
Also, use your chemo helpline number as you need, they are there to support you and I’ve rung thinking I was making a fuss and been prescribed extra stuff to help with side effects and they’ve said it was good I rang!
Good luck with your treatment


So helpful! Thank you :blush: It’s nice to hear positive experiences as after reading what it was like to go through an mx and then actually going through it the reality was a lot easier than what I had read. And while I know this treatment is going to be much more gruelling having all of this advice is half the battle!