Here’s the link
Yeah Tina I am pleased with how it turned out in the end. Will have enough long hair to work with it for now and should grow enough for my wedding day next year!
We certainly have been brave Tina. I made my fiancé put a cold cap on for 5 minutes during last session. The nurses obliged! He hated every second of it. You should have seen his face. He was relieved when 5 minutes was over. It is not for everyone but I think if you are determined to keep as much hair as possible then you can do it, with some support for the last couple as hair will still thin out.
I am hoping at 35 I won’t need to cover grey but then who knows how it will come back through. Will keep the link in mind Ali.
Whatever you decide to do about cold capping it is a personal decision and you will know when you make the best choice for you.
Xx
Evening ladies. I have 2nd Chemo on Tuesday and used cold cap on cycle 1. I’ve had some minor shedding over last few days but tonight my scalp is feeling sore and tender. Is this a sign of further hair loss to come? Helen x
Thanks for your reply Tina. It has made me feel more positive again as yesterday I wax very down!!! I am determined to persevere with cold cap and terrified to wash it again this weekend. Have managed not to wash since Monday but it looks and feels horrible. How often did you wash in between cycles? Helen x
Hi Tina. I’m a twiddler too and finding it very hard to leave my hair alone. Decided to try and leave leave washing hair until I come home from chemo on Tuesday. That way I only have to get upset once!!! The cap didn’t feel as cold as I expected it to on 1st cycle so still thinking it wasn’t a good fit. Having said that hair is just thinning and no sign of any bald patches yet. I really hope it works for me as losing my hair is terrifying the hell out of me. It was the first thing I thought when they told me I had breast cancer!!! Vain or what. Lol.x Helen
Thanks Ali. I take after my mum. Got same breast cancer as her, and also she didn’t start going noticably grey until 40. Unfortunately we lost her at just turned 49. Hopefully this treatment has worked and I won’t take after her in that respect too.
Helen no not vain at all. Our hair is part of what makes us feel womanly and ‘ourselves’. I had already had my breast taken away and reconstructed. I was adamant it wasn’t taking my hair, or my fertility if I could help it.
It’s just self preservation hun that’s all.
I found this online today. Its a pdf of a leaflet about hair and cancer. Got useful bits on it for every eventuality with your own hair.
Found it answered a few of my questions.
Hope it helps xx
More loss after cycle 2 ??? I’m dreading it as it’s bad enough after cycle 1.
Hoping what’s coming out in my hands or brush is looking worse than it actually is. Hair definately feels thinner. Just hoping the cold cap works enough to not need a wig. My friend has given me the one she had 2 years ago and i look like cousin it from the addams family!!!
Thanks for all your replies. I have to be honest and say I didn’t find the cold cap that bad on cycle 1. But given the amount of hair I’ve lost over last few days I’m beginning to think it wasn’t a good fit. Determined to persevere but beginning to lose faith. My friend tried it 2 years and said she was so cold her teeth were chattering. I only felt the cold for the first 15 mins and then I sat quite comfortably in short sleeves with a fleece blanket draped round my shoulders. I normally don’t do being cold at all and even complain when someone opens a window!!! I was expecting it to be unbearable but it wasn’t. Will have a chat with nurses on Monday when I go for blood tests. Helen x
How did you all cope with the endless shedding? It’s everywhere!!!
Enjoy your Sunday ladies.
Helen x
Hi Tina
Thanks for lovely and inspirational comments. Had a but of a weep tonight as the shedding seems to be getting worse. My other half keeps telling me it doesn’t look any different and I know if I hadn’t cold capped it would probably be coming out much worse. But I still feel deflated and disappointed. I really wanted the cold cap to work and maybe I’ve pinned too much hope on it. Determined to try again on cycle 2. Does the hair loss get worse with cycle 2 or does it slow down?
Helen x
Hi Tina. Feeling better about hair today. Decided to wait to wash after cycle 2 tomorrow. That way I can get rid of conditioner at same time. Dreading how much will come out but I guess I can’t stop it now. Can I ask did you use any products on your hair to help improve what was left? Mine has a mind of its own if I don’t dry and style it. Hating not being able to wash it every day. Helen.x
Hi Tina. I’m on a downer again now. Just been for blood tests ready for tomorrow and asked about cold cap fitting. The nurse I saw thinks I had wrong size last time. I said I wanted to try smaller one tomorrow but got impression she thinks I’m wasting my time. Should I carry on or is it too late if first one didn’t fit tight? Helen x
Hi Tina. The nurse tried medium one on me today and said that was a good fit. When I told last time they used a large she said it was too big. She didn’t say I was wasting my time but her facial expression said as much. I could be reading too much into it and will definately be trying again tomorrow. My mum’s just arrived and doesn’t think I look any different. She also thinks the wig my friend gave me looks nice. Thanks for keeping me positive. Helen x
Hi Tina. They won’t refer me for a wig until I decide to give up on the cold cap. Tried the one my friend gave me for my mum and she’s convinced me it will look ok if I get my hairdresser to thin it a bit. Will let you know how I get on tomorrow. Thanks again for your advice. Helen x
I’m in West Yorkshire Tina. I’m really upset they won’t refer me just in case. She said it can take 2 to 4 weeks to get an appointment too. So if cycle 2 doesn’t work I could need one sooner. Will definately be talking to my breast care nurse tomorrow. Did you wash your hair before chemo like it says in Paxman leaflet? I haven’t washed mine for a week and was planning to wash after chemo rather than after. Helen x
Asked today about a referral. They said they don’t refer until you give up on cold cap as previously some woman have got a wig and never actually used it so it’s a waste of money. Helen x
I was told the same that everyone is entitled. Guess it goes to show the postcode lottery. Even people who cold cap won’t keep all their hair. Keep on at them Helen. Telk them how concerned you are. Tell them you don’t want to be sat there with hair coming out knocking your confidence and making you not want yo go outside. If you get no joy call Mcmillian and get them to start hounding on your behalf. They are brilliant support with everything.
Which nhs are you under? Can you not switch to a different hospital out of county that is more helpful? I think it is shocking what they are doing. A wig is only good for about 6months to a year anyway of it is long and a year to 18months if short and used everyday, which most people with haor loss will do. Why not let someone have that security that it is there so they don’t have to go through feeling like they don’t want to face the world and go out! Sorry I am just so shocked. Its terrible. Call breast cancer care too maybe there is something they could do to fight your corner too.
Hope it works out and you get your wig soon. Keep is updated Helen.
Vicky xx
I am so cross at your hospital Helen. Don’t refer until you gove up on cold cap… what are they trying to do… put ladies off trying to keep their own hair? It’s not helpful, it’s not compassionate, it’s living in the dark ages.
Tell them that noone who cold caps will keep 100% of their hair. Flipping heck if they have that great a sucess rate they should be teaching the rest of the country how it is done! Sounds to me like they are just trying to put people off the cold cap. It’s disgusting!!
Helen I cold capped the whole way. I had beautiful long auburn hair. I was determined that my wig should be at least the same colour as I didn’t want anyone to notice. I had trouble finding one. I found one in the end, just one. I had searched in 2 different shops, the only places my voucher was valid. The wig was £400 though and I couldn’t afford to put the rest to it. I asked the prothesis department if there was anything they could do. I was thinking just an extra £50 would help, or re issuing the voucher for a slightly different area so I could try other shops, anything. They re-issued a voucher to cover it all as I have such a unique hair colour and nothing else even came close. That is the sort of helpful NHS you need hun. They don’t do it for everyone but it’s not often someone will have trouble colour matching.
I can’t believe they won’t give you a voucher. I really can’t. I would be lost without my wig. I had all the same anxieties as Tina. Your hospital are supposed to help reduce stress and anxiety as it is proven that if you aren’t stressed the chemo etc work better. Stress causes a toxic body and we as cancer patients are already toxic enough as it is! Makes me want to call and hound them on your behalf. If there is anything I can do to help let me know and I will do it.
Xx
Helen, I am also astounded by your hospitals approach and agree with everything already said. I just do not know how they can justify this x