I am waiting to find out which chemotherapy regime I will be put on and if it will allow me to scalp cool. I know that scalp cooling itself isn’t a guarantee for keeping one’s hair. I am absolutely devastated. I have a phobia of cutting my hair due to childhood trauma and the only way I can see myself getting through this is by staying in my room until the whole thing is over. My husband is extremely concerned about this. I have been to have a wig measured yesterday which has only added to the upset. I just don’t think I can walk out the front door if I lose my hair. I am so upset and absolutely devastated. I know there are more important things at stake when diagnosed with cancer, but this physical aspect of it is absolutely breaking me. Using scarves etc would be even worse for me. I have had counselling and various types of therapy before for health anxiety with little success, so I don’t think seeing someone would help. The nurse has suggested a clinical psychologist, but there is a year’s wait to see them. The irony is that to access all of these things, I’d probably have to leave the house anyway.
Hi @treacle I am so sorry to hear you are struggling like this. Right now you must be in fight or flight mode which makes everything much worse, especially trauma response. From my reading most people get through first cycle without losing too much hair so it won’t happen immediately that was my experience. Me and my partner are currently on a get through today pattern which sounds patronising but does help. My partner has complex PTSD so I have some idea of the depth of this stuff never mind bloody cancer.
Find a Maggie centre. You can ring them and they offer psychology. Cancer is a shit show but it does attract lots of good free stuff you wouldn’t get elsewhere. They can help hubby too.
you can get through this. X
Hi @treacle , I’m from the August 25 chemo starters so am through the other side. I think the hair loss was the worst part of this for me, and probably most of us. It’s like you can cope with everything else, the poking and prodding, surgeries, the chemo, the radiotherapy etc but the hair loss is just the straw that breaks our camels backs it seems. Hair is so much of what makes us “us”. I had long thick hair almost waist length 
, I took the initiative and had the bulk of it cut off and donated it to the Little Princess Trust, figuring I could help a child or two who was in my position. I then had 4xEC, and 4xpaclitaxel. It was the EC that caused the hair loss, by the time I was on pac it started coming back very slowly. I started losing it week 3 and ended up having to brave the shave, which was horrible but did give me a feeling of control over the situation. I used a cap, and beanies more than my wig, but the wig was great for going shopping and now I’ve just started back at work it’s helping me feel more normal. Nobody knows it’s a wig, they’re really good. I finished chemo at the end of November, by the end of December I had pale “peach fuzz” on my head, and I currently have about 1cm of thick dark hair all over my head, and am happy at home and in the garden wigless but not out in public yet.
I’m hoping that by May time I might be able to just sport a pixie cut, which really isn’t me but feels achievable and will be a massive step forward.
I don’t know If this helps or not! I just wanted to say I personally found it the hardest bit - especially thinking about it beforehand because I didn’t want to “look like I had cancer”, and definitely the week I lost it. Also speaking to other people on here and in the chemo suite they all said the hair loss is the worst bit. But we’re braver and stronger than we know, you will get through it, and in 6 months time you’ll have a good covering of hair again like me and my August friends (assuming you lose it). I do think it helped being in the chemo suite and seeing all those people in hats, wraps and wigs, all bravely smiling through it all, and knowing I wasn’t alone.
I didn’t cold cap, I wasn’t offered it but probably would have tried if I could. And in my 8 chemo sessions I only saw one lady using it once. But my unit covers a very large area and was always full, so I did wonder if they tried not to push it here to shorten session times.
All I can really say is, take one day at a time, try not to worry about the big picture, one day at a time, one cycle at a time, you will get there. I’m not saying it’s easy, it’s definitely a slog, but we’re all here, the chemo nurses and fellow patients are all here, Maggie’s is there, and all of your family and friends. You aren’t alone, and before you know it you’ll be cheering your regrowth 
.
Big hugs xx
@bramble1 I am so glad I came across your message here as I’m also on 4 EC and 4 Pax, have had my 3rd EC and lost a good chunk of hair after EC2, although my chemo nurse doesn’t seem to think it’s bad hair loss at all but I feel like I’ve lost loads. I am cold capping and wasn’t sure whether to try continue through Pax because of the infusion time, so really reassuring to hear you’re actually started growing back during Pax - was yours also a dose dense treatment so 3hr infusion time?
Hi @herts82 yes 3 hours infusion for pax plus a bit extra for antihistamine to kick in, and then Picc flushing etc. Don’t get too excited about the pax regrowth but you do start noticing it. To start with I had some very annoying spiky bits I had to stop myself fiddling with 
. Then my last dose was 29/11 and by Christmas I had pale peach fuzz all over my head, so it really was quite quick. I lost my eyelashes and brows around Christmas but they came back within a few weeks and that was much less distressing than the hair on my head falling out. It seems to be EC that causes the damage, not pax if that helps. And I didn’t lose all of my hair, even without the cold cap. So don’t worry too much if you decide not to continue 
xx
Treacle, my heart goes out to you. I am a bit farther along than you are but wanted to say that the hair loss was the most devastating aspect of this whole horrible journey. I get what you say completely.
I cold capped and there was a fantastic support group on Facebook with tips and suggestions on products. Survivors bravely posted photos of their progress. I lost a lot 70 % even with cold capping and it was scary! It was concrete evidence of this awful disease and the toxic meds they use to treat it. I had a wig but never wore it. It was winter so I got away with wool hats. But the best trick was a topper. You can get one on Amazon. It clips into your remaining strands. I even had it cut, styled, and highlighted. ( for free as a gift from my hairdresser). Please look into that. It was a lifesaver and allowed me to get through the dreadful experience. Once I had hair I found a genius lady from that Facebook group named Leah Stylist. She started me on hair extensions with tiny keratin attachments which she mini cut. They made me look better than my own hair did! I finally quit the extensions when my own hair grew in but would have continued if not for the $$$. God bless you through this battle and good health to you. This is a fabulous group. Be well, sending much love.