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Trying to get through the journey of growing my hair back

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  • SilbaSilba SydneyMember Posts: 113
    I  used to have a really nice concave light brown bob, after chemo , I am grey or salt and pepper as my friends call it.

    I am keeping the grey , but keeping it short, my hairdresser says to me "do you know how much I charge to have hair colour like yours"", so I take that as as complement and bite back on my "I wish my old hair back".

    It's funny though when I am with my Mum, I'm 50 and grey she's 81 and blonde, go figure :)
  • Caz1Caz1 Bayside , Melbourne Member Posts: 229
    @Lynnie1974 , that’s hilarious, I love it, ‘ I’m going to be just as high maintenance as before, if not more ‘  :D

    This is defs gonna be my new mantra too!  ;););)

  • NefertariNefertari Member Posts: 288
    @NS00159656, thanks for the recipe.  I will give it a go.  You ladies cheer me up no end   ;)
    Still struggling with the fleece but laughing about it now.
  • BeaglemumBeaglemum Member Posts: 19
    I've been reading this thread a lot as I've been waiting for my hair to start falling out with the hope that all your posts will remind me that its not the end of the world, there are much scarier things out there.  However as hair starts to fall out it feels like my worse nightmare has come to life and I'm freaking out.  Its a competition between me and my beagles as to who leaves most hairs behind at the moment!

    I have really short hair anyway so that should help - I normally have it cut every 5 weeks  and was a daily washer (now cut down to twice  a week)  - going to the hairdressers tomorrow to get it even shorter I have already warned her that its shedding and I'm likely to cry all over her.  

     I have my second round of chemo on Thursday and am using the cooling cap in the hope that I don't lose it all, but I think if its going should I just shave it off anyway.  You all make it sound like its very liberating.  

    Did any of you wear a wig at all while you were losing your hair.  

    And finally if one more well meaning person tells me "it'll grow back"  I might just lose it!!

    thank you all for keeping me sane

  • SisterSister Adelaide Hills, SAMember Posts: 4,588
    I started with the cold caps and as they didn't work well enough, I stopped after 2 gos.  I found the bald strip and the shedding to be that one thing too much at the time.  I had it clipped to a No. 2 (hubby wouldn't do anything less than that - he had more of a problem with it than I did) and, possibly because I started with the caps, it never all fell out completely.  To be honest, I should have gone to a barber and had it shaved.  It was Winter so I did wear beanies, but when going out in the world it was mostly scarves and a wig for when I didn't want anyone to notice.  Rather than rush off and buy one, check to see if there are any wig libraries in your area as you may find that you hardly ever wear it.  For me, it was the eyebrows going that I found more difficult to deal with.  Worth practising drawing them in while you've still got them!  If you haven't done it, try to get to a Look Good Feel Better workshop.
  • AfraserAfraser MelbourneMember Posts: 2,962
    When my hair started falling out, I had it cut very short (no 3 clippers) and wore a wig from then on. Everyone finds their own way of dealing with the hair loss but a wig, for me, meant that at work (I worked through chemo as I had no nausea or fatigue) everything  was normal. All my colleagues knew about treatment, but I worked with a wide range of external contacts, who didn’t need to know. With all the stuff associated with treatment, a bit of normality was precious. Best wishes. 
  • wendy_h67wendy_h67 Member, Dragonfly Posts: 466
    I don't know what you are worried about,  at least your hair has grown back. I have lost my hair 4 times now due to  chemo over a 7year period. Each time it has grown back a little different,  sometimes curly and sometimes straight. At present I have just enough coverage to not wear a hat but it doesn't seem to want to go the way I use to have it. It is grey and I use to dye it a blonde colour but my hairdresser is reluctant to put a colour in it. I have got use to the grey now and thankful for the hair that I have got.
  • AfraserAfraser MelbourneMember Posts: 2,962
    Salutary reminder @wendy_h67! We could all be a lot worse off. Here’s hoping you never lose it again. 
  • BlondyBlondy Ruse Member Posts: 208
    Famous last words @Beaglemum. I had long hair and the cool cap from Dec to Feb. Started shedding about 12 days after 1st and then same timeline with every one after. My hair got skinnier and skinnier. In the April I bought an online real hair wig with 80% paid by my health fund. Need a letter from oncologist for that. Omg it was horrible. I have over the years  amassed a huge collection of wigs and pieces, ponytails etc of which I wear, but none are human hair but all of them lovely. The human hair had 130% of hair. It was nothing like the picture  so I went and got it cut  but I looked like some TV mum from the 70's. Later that day I went to my own salon with my husband and got him to clipper it all off with an attachment leaving it about 1 1/2 inches long/short. My hair had not all gone but I'd lost more on the crown and temples.  I knew all the hair would be curly when it returned and knew it would look daft amongst the remaining long hair I kept it covered then, for 2 months and then I went without .By Christmas I had the most beautiful head of short gorgeous curls .11 months later my hair is layered and the length down to my shoulders and I can wear it up. In the beginning I bought so many glitter berets in every colour. I went to op shops and bought up long scarves. I used to tie them up and do big bows sealed with a diamonte brooch. I had a lot of fun trying not to look like chemo head .Fortunately for some of the time I had my long hair hanging below the scarf. After I cut it short I went into a Muslim shop by accident and I thought I was at Disneyland They had a cap with a knob like an onion, so when I wore a scarf it looked like it was hair underneath. They had other caps with a band of diamontes across the front and you wear a scarf on top. I had a ball with all of that and as you can guess  I love sparkle. So sparkle I did. Funnily enough a few years ago my husbands band always introduce me as Susie Sparkle. What kept my spirits up, were the words you hate to hear  but it happened. I've not had a haircut since April of last year. Considering you wear yours short already, and hoping you don't lose too much, you might be able to get away with a little less hair. Do you ever wear shaper or any product to fluff it up. It might help to make it look more. Positive vibes for the future .
  • Caz1Caz1 Bayside , Melbourne Member Posts: 229
    Hi @Beaglemum

    I totally understand how you are feeling....I found it very distressing when my hair started falling out..don’t worry,  the rate of shedding slows down!
     I was cold capping , it’s normal for some hair to fall out with it, but as I really couldn’t afford to lose much as my hair was thin  it soon became patchy. So I stopped after 4 sessions, on the upside I didn’t lose it all .  ;)  I decided to shave it off  (number 2) and am  happy with it. It makes me feel strong and groovy lol.
    I tried a wig but never felt comfortable. 

    @kezmusc has lots of info about cold capping and has successfully  kept her beautiful hair too.

    hang in there, you got this.....
    caz x

  • kezmusckezmusc Member Posts: 1,469
    edited November 2019
    Hi @Beaglemum and thank you for the tag @Caz1.

    Women sometimes feel guilty about getting upset about hair loss.  I was told that how I looked was the last thing I should be worried about during cancer treatment, and cold capping is a waste of time, it doesn't work, don't bother, it's not worth it,' That oncologist got sacked.
     For me ,and I'm sure for a lot of people, there was that element of appearance, but a lot about losing your privacy and having everybody else know what's going on.
    Yes, there are more important things but that doesn't make it any easier to get through.
     I have yet to meet any woman where losing their hair is not one of the first thoughts that go through their head when they are told they need chemo. There may be some, but I haven't met any. It's very personal and it affects some people more than others. Don't feel bad about it.
    Cold capping is difficult.   It adds a whole extra level of stress for the entire time.  You are so hopeful that this thing is going to work that each strand that falls makes you doubt it. The success rate is variable (they don't know why yet).  The figures are roughly 50-60% success. That rate is considered keeping 50% or more of your hair. 
    Everybody loses a lot of hair a day but we never pay any attention to it, add the extra shedding from chemo and that equals a lot of hair drop to freak you out.  
    It is unfortunate that you really have to go in knowing as much as you can for yourself about the caps before you start.  Some nurses are capping champions, some are not and some don't like them because it adds in more work so they aren't very particular.  In some countries 80-90% of hospitals have caps and it's more unusual to not  use it. 
    The best person to control what's going on is you. 
     I have put up some pictures so you can see how much actually shed out.  It really didn't look like I had lost that much until it started to grow back.
    1.  Day 14 after chemo 1.  Xmas day actually
    2  Last day of chemo
    3  About 4 months post final chemo, curly bits coming through
    4.  Probably about 12 months after chemo.  That's the amount of hair that had shed all over which was a surprise.

    All the best lovely. If you want any info just PM me.  Happy to help if I can.
    xoxoxo


     
  • BeaglemumBeaglemum Member Posts: 19
    Thanks @sister, @Blondy , @Caz1  & @Kezmusc - its good to hear from those who have actually used the cool cap
    love the sound of all the sparkly,  maybe I should experiment a bit - just get out there and brave it - an outrageous wig might be the answer - something totally different from my normal hair so I don't look like I'm just trying to replicate it. 
    I do wear product in my hair and that helps fluff it up as it is quite fine anyway -maybe I'll get through it with a bit of extra product and a good clipping from my hairdresser.  I've been to the hairdressers today - we decided my short hair did need to be that bit shorter, which i don't mind but the grey is coming through as I can't colour it.  I was shedding a bit (a lot!) she showed me how much had come out when it was washed - it was quite a lot considering it was short already.  She was great, we talked hair plans, tried on the wigs I had bought and made sure she had pushed back next client so she could have the time with me to talk.  And yes I did cry on her - but I had warned her that I would anyway.
    If I'm honest I think I'm more bothered that losing my hair will be a dead giveaway and everyone will know my situation -exactly what @kexmusc said.
    Thanks for the pics - good to see you were able to keep your hair long throughout the process. I've taken pics as well, some the day before starting chemo - took some on Friday (day 15 post chemo 1) as I new it would start soon after that - will take some in the morning I think before round 2.  These will be for me and then again like you to help someone later down the line if they need it.  Secretly looking forward to having curly hair if thats what happens - never had it except my tight curly perms in the 80's that everyone had - now there's pics i should of kept!
    Big thanks again to you all xx

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