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helen1971
Member
since
07-02-2016
193
Posts
61
Hugs
20-04-2016
07:25
Hi Lou. That's great news. I agree with Sarah that you will feel better once you get your treatment plan. When they told me 6 lots of chemo so 18 weeks in total It seemed like it would take forever but already on week 5. Time is passing quicker than I expected. How are you coping with your chemo Sarah? Helen x
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15-04-2016
03:26
Thanks Ali. It's good to know I'm not alone. Hubbie says I still look lovely but I know he's just saying that to make me feel better. X
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15-04-2016
02:02
1 Hug
Hello ladies. I'm day 3 of my 2nd EC and yesterday made the decision to get my hairdresser to cut what was left of my hair into a short pixie cut. And I hate it!!! I can't look at myself in the mirror without crying and am even wearing a hat indoors (even though I'm alone) just so I don't catch a glimpse of myself. The kicker is that I tried the cold cap for 2 cycles but unfortunately the nurse who fit it on my 1st cycle used the wrong size and so it didn't work. Hair started to shed by 2nd week and by Monday of this week I was getting bald patches. I persevered with the cold cap again on cycle 2 but if was absolute torture. I was finding it annoying finding hair everywhere so yesterday I made the difficult decision. My worry now is that I'm going to hide away and not want anyone to see me like this. I feel like I'm not me anymore. I've lost my identity and look like a cancer patient (I know I am but I wanted to hide out from the world). How have you ladies coped?? Helen x
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14-04-2016
06:09
1 Hug
Sarah it started shedding slowly on about day 15 of cycle 1 but then in the last few days it started coming out in handfuls. To be honest I don't think the cap was fit correctly on cycle 1 so the damage had already been done before I suffered cycle 2. Devastated that it hasn't worked but just have to move on!!! Helen x
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14-04-2016
03:03
1 Hug
2nd EC done and feeling much better on the new anti sickness tablets. Still have the hungover feeling and feel more tired this time. On the negative despite cold capping for 2 cycles my hair had almost gone so my hairdresser has just been and cut what's left into a short cut. Wasn't ready to shave it off yet!!! Disappointed that the cold cap hasn't worked and it was very emotional watching the rest be cut off but it's also a relief in a way as I was getting really fed up finding hair everywhere. Hope everyone is coping with there treatment. We can fight this!!!! Helen x
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14-04-2016
02:40
Hi Lou and Sarah. Hope you are both doing OK. Sorry to have to repair that the cold cap hasn't worked for me and today my hairdresser has been to cut what's left very short. Wasn't ready to shave it yet!!! She's also restyled the wig that my friend gave me as I have to wait for a wig referral on NHS now. Hope it works for you Sarah. Helen x
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14-04-2016
02:38
2 Hugs
Well the hair has gone!!!! Washed it this morning and it almost all came out. Phoned hairdresser and she came up to house . She's cut what's left very short. Chemo unit have finally agreed to a wig referral but could be up to 3 weeks so my hairdresser has restyled the one my friend gave me. Very upsetting to see my hair go but also a relief in a strange was as it was getting so annoying finding hairs everywhere. Helen x
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13-04-2016
11:52
1 Hug
Morning ladies and thank you all for your messages of support and anger!!! Hair is falling out thick and fast and yesterday they told me that the wrong size cap was used on cycle 1. At the time I didn't know what to expect so I just went along with what they advised. They used a smaller size yesterday which felt much colder and there was ice on my head when it was removed. Headache lasted hours after too. Guess the damage from cycle 1 cannot be reversed so I'm coming round to the idea that I need to give up on the cap and embrace going bald!!! To say I'm gutted is an understatement but in the grand scale of things I guess I have more important things to worry about. Helen x
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12-04-2016
04:02
1 Hug
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
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12-04-2016
03:57
Hi Lou. I'm 2 down 4 to go!!!! Felt a not funny during chemo this time but it soon passed. Cold cap was a better fit this time so much colder and had ice on my head this time. Hair still coming out much faster than I was expecting but mum and other half both say they can't tell. How are you doing? Helen x
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11-04-2016
10:14
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
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11-04-2016
08:51
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
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11-04-2016
04:26
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
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11-04-2016
12:55
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
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11-04-2016
09:50
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
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10-04-2016
08:49
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
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10-04-2016
10:46
How did you all cope with the endless shedding? It's everywhere!!!!! Enjoy your Sunday ladies. Helen x
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09-04-2016
10:20
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
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09-04-2016
07:30
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!!!!!
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09-04-2016
06:03
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
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