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Hi again, ive met with my oncologist today and it’s all become very daunting now how the new year will look. 

A superficial concern but a very real one- hair. 

How is everyone’s experience with the cold cap? I understand it’s uncomfortable and I’m fully prepared for that. 

Are there any success stories? If it didn’t work for you, why didn’t it work? 

TIA just trying to be mentally prepared xxx

  • Hi, it’s not a superficial concern at all. It’s something we feel we can have a little control over and actually make decisions for ourselves about.

    I’ve so far had two rounds of my chemo and I’m cold capping. I was unsure if I wanted to do it right up until the last moment as I’d heard lots of stories of how hard some people find it. I had worked up such a horror story in my head about it! But I tried it and personally I was able to tolerate it. It’s a strange sensation to start with (like putting a wet swimming hat on cold wet hair) but if you can take the first 15 minutes of it you’ll be fine.

    Next week will be my third week and they say that it’s the 3/4 week that it really starts to drop. I have a few ‘patches’ of hair loss already - not that I was particularly aware of but when my chemo nurse was preparing me yesterday she had to use some of my hair to cover them to protect my scalp. I have been super kind to my hair, it’s not very pleasant but I’ve only washed it a couple of times, no drying, I only comb through with a wide toothed wooden comb once a day and just tie up in a silk scrunchie. I figure the less I ‘faff’ with it the more chance it had of staying put!

    I’m under no illusion of keeping a full head of hair and if it ends up all going then so be it, at least I was able to give it the best possible chance. I’m of the mindset that if it comes out it’s a small price (albeit not very nice one) to pay if it means killing cancer cells. Our hair will grow back eventually but hopefully not our cancer.

    One step at a time, breathe, we’ve got this xxx

  • Hi   it’s definitely not a superficial concern. I cold capped through all my treatment (8 lots of chemo) after the 3rd one I lost a lot of hair and by the 4th I would say I had lost 70% of my hair. However, the nurses convinced me to continue so I did and so glad I did. By the 6th one my hair was growing back again whereas others who hadn’t cold capped were still bald til the end of treatment. I finished my chemo in March and by April I had a full head of hair that was at least an inch long. 

    im not gonna lie, it was tough doing the extra hours but im so glad i did! I always took a paracetamol before each treatment & when my hair got thin I wore surgical cap so it protected my head from the cold. 

    good luck with your treatment! 

  • Hi, I hope you don’t mi d me jumping in..

    Ive just done my second cold cap and I had a few thinning patches already so I’m guessing I will be in a similar situation to yourself. My chemo nurse just wrapped and stuck down with conditioner some of my long hair over the patches to protect my skin.

    If you have minimal hair left, do they do something different to protect the skin on your head? Or do they just plonk the cap on anyway? I had been told that they can stop it sometimes because they don’t want to give your skin frost bite?

    I actually find the extra time at the end quite calming - it makes me feel safe staying on the chemo unit with the nurses ‘just in case…’ I think for me jumping up and leaving straight away would unsettle me (but I’m a worry wart!)

    Take care x

  • Hi   of course not! Yes I had the same, they used my longer hair to cover any bald patches initially but then I used a surgical cap (my chemo unit had them so ask and If not you can get them off Amazon) and had that on top of my hair to protect my scalp from frost! 

    im glad you find it soothing, I just found the whole experience really lonely and couldn’t wait to get home to my husband. There was nobody to talk to when I did mine but now other units are different.

    feel free to ask any questions! 

  • Oh wow that’s amazing, did your hair actually start growing back whilst you were still having treatment. 
    I can’t lie, I am so nervous for this part of it. I’m glad you’ve a positive story even form hair loss xx

  • Yes I will be the same; I will be leaving my hair as untouched as possible to try and save it. If you remember to do so, I’d love to be kept upto date with how the weeks are progressing with your hair journey xx

  • Thank you for coming back to me.

    I think I may just order one and take it with me (my next EC is on the 12th) as I think it might be fairly thin by then. If I just have it, it might be easier!

    Yes, it is a lonely journey I agree. I am 46 and find myself in bays with a lot older ladies and gentlemen. They’ve all been lovely but not really on my wave length - they have different types of concerns. But I just plug myself into an audio book and the time flies!


  • Are you able to have someone with you during chemo at your unit? Xx

  • Yes of course I’ll keep in touch. I’ve found it helpful having people a bit ahead of me who I can ask different things.

    I have my next treatment on the 12th. I think that possibly I may go the same way as shellbell24 with regards to hair loss but I went into it expecting to lose 60/70% anyway. But like you, I found it reassuring that her hair starting come through quickly. xxx

  • I’m not allowed anyone with me on my particular unit. But I’m not sure all hospitals are the same. We also have quite a lot of covid going around in our area so they’re being very cautious. When I had my mastectomy it was the same - my husband and daughter had to leave me at the door…

    But it gives you time to focus and just concentrate on the job at hand. For my first round I really didn’t know what to expect and took EVERYTHING with me! iPad for films and audiable, quiz book, snacks, flask of tea…. But there is so much going on that I hardly had time to myself.

    I guess it’s probably all dependent on what treatment you are having. For my treatment, my chemo nurse sits with me the whole time slowly injecting the drugs into my PICC line, but I know some are drips on an IV line and you’re left to it. xx