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, 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
Totally agree with everything Tina and Vicky have said! Hair loss is traumatic and stressful and having a wig, even if you don't wear it helps with coping with it! How can it be so different from one nhs trust to another. The cost of a wig voucher is nothing compared to the cost of treatment! My surgeon said to me that the process of treating me was not just about the cancer it was about me as a person. Feeling better about your appearance is very important in helping you cope.
We're Right behind you!
Well said Vicky!!!! Totally agree! Disgusting the way you're being treated Helen.
I was beside myself with emotional stress thinking of losing my hair, my identity...... Me! Having a wig that fits and looks nice was a small comfort to me (still is!) when the hair went tits up!
Cold capping does not work for everyone, but when it works is a relief! However..... You will still lose some of your hair, maybe 30, 40, 50, 60, 70%? And it will change texture, look unruly, go frizzy, thin and brittle! But to have the choice of wearing your chosen wig on days when you're hair is really upsetting or you've somewhere special to go us some small mental comfort!
What Your hospital, nurse etc are saying is cruel! Going through this **bleep** is mentally, physically and emotionally draining enough without them adding to it!! I'm so annoyed and upset for you.
is it some 'jobsworth' being a pain? For gods sake we pay our NH ins! Why aren't they encouraging the system!? It doesn't get offered to everyone.... But I thought the NHS voucher for a wig was!?!
Hope you're feeling ok after your session Hun xxx you really don't need this stress xxx Tina
😳 Aw Helen that's awful!! I just don't understand! I was told that everyone was entitled to NHS voucher..... How bloody ridiculous!?! I've spoken to so many ladies who've donated theirs once finished with so they don't go to waste!!!
Hope you're feeling ok and SE not too bad this time. Xxx Tina
i am being treated in Liverpool and trying the cold cap. I was given an NHS Voucher worth £150 towards a wig and a list of shops who sell wigs. I work full time and I didn't think I would be entitled to a voucher but was told by the BCN that everybody gets the voucher regardless of circumstances. I bought a wig jus tin case and only had to pay £54 towards it. I haven't lost any hair yet but have worn the wig a couple of times to give me confidence for when I actually do need it. Ask you Breast Cancer Nurse or the Chemo Nurse for a voucher.
Hi Helen, I've just read your comments re wig vouchers. I'm wide awake with steroid insomnia!
I have just had cycle 5 and have stuck with the cold cap. Hair v thin but still on my head!
I don't quality for an NHS voucher, but I did get a wig sorted before I started chemo as I wanted the reassurance of back up if I needed it. I haven't actually worn it yet as I can get away with hats with my hair showing underneath.
i would definitely push for a referral. The cold cap although effective does not, in the majority of cases, stop hair thinning, and for a lot of us the hair issue is one of the most difficult parts of this process. It seems different hospitals and nhs trusts have very different ways of treating patients.
Helen I didn't have appointment, just letter in post from prosthetics asking me to choose which hair salon I'd like to use.... As only certain ones had the contract, so I chose mt nearest one. I'm in Scotland. It's shocking the things you read on these forums as to how we all get treated differently.
I didnt wash mine before hand. Just washed when home after chemo.
Hope you get some joy from your BC nurse tomorrow 🙏🏼😚 xxx
Hi, that's appalling I live near Blackpool I was given a voucher for a wig when I went for my chemo info chat, regardless of the fact I said I wanted to use the cold cap.
My hair did thin but kept a decent amount through chemo. I've only started wearing my wig recently when going out in the evening.
Whaaaaat!!!?!! Where do you live? That's shocking! My nurse told me she'd sorted a voucher for me before I'd started chemo! I had my apt with her and consultant on the 8th Dec, first cycle 18th dec. Voucher through by second week jan. (Due to Xmas closure or it would have been sooner?!) My wig was here by end January! Hairdresser fitted it properly and trimmed it for me. I can't believe that!?! My hubby did ask why i got one so early? Told him its a back up should I lose mire than expected?..... Jeeze! Makes sense to have something as back up? Oh Helen, I'm gob smacked!? Xxx
Helen, I don't think it'll be too late...... We're all very over sensitive and you probably did read too much into it Hun? Especially as you felt it wasn't right last time? My first time it sat almost on my eyebrows!? Subsequent times? Just below my hair line! I asked cycle 2 if it was same cap as it felt different and was assured it was same size!?
My wig is same style and colour I was pre chemo! ..... Though I've only worn once to see how it felt. My nurse advised not to wear my wig unless I desperately needed to!? Even though I had a nylon hair net to put in first, said avoid unessessary aggravation to scalp and hair.
Have you been given/sent a voucher to chose your own yet? You're entitled to one on NHS. Mines NHS and is really nice. Xxx
Aw Hun...... What makes you think you had wrong size last time? You have every right to ask them to fit the right one!!! What did she say to make you think you'd be wasting your time!? If I were you? I'd give it another go. Is there an advice line in the Paxman info you've got? Xx
Ah I'm glad Helen ☺️ It's def good feeling washing that conditioner and cap smell off your hair!
Would love to have used and use styling products to help with texture and unruliness!? The only thing I have used, whether good or bad, is on gently patting dry I sprayed a small amount of the Aussie leave in conditioner. I only did this, as though I'd used conditioner and rinsed, needed something to help the comb through the ends where the dead matted hair collected.
Make sure you use the shower head at a slow warm speed. I haven't washed my hair in the shower (I do it over bath) for months. If I have a shower I use a shower cap and avoid the water hitting my head as the pressure is too hard. I Use dryer on the lowest coolest setting and a wide vent brush gently to try and get some sort of style. Be patient, as it all takes do much longer to wash and dry it. Don't pull at roots. I don't dry it completely, mainly fringe and sides. Once it is dry I either spray some hairspray on my comb and gently comb it down as it can frizz up.
I used to wash mine every other day! I can't wait to have a good head massage and get it done by my hairdresser! Or get it coloured again! The unit and Paxman don't advise using products, but I chanced.
Oh Helen Hun..... My hubby, kids and friends all said the same.
When my hair is wet you can my scalp. But I've no bald areas. It looks ok when it's dried gently and has some volume in it. It's dry, brittle and thin..... But it's there!
You sound just like I was back in January, I was so upset and disheartened, I assumed and hoped using the cap I'd not see any loss.... I think the wash I didn't cry after was cycle 3?
Honestly? ..... I lost a lot, in my opinion, the wash after cycle 2. It Slowed a bit after 3. Then the First T cycle is a tough one where your body is still dealing with FEC and the has T on top of things!! I thought T was gentler on hair but still shed. It was after first T I noticed my lashes and brows thinning.... I've some lashes left and though brows still have the shape they too are definitely thinner. Cycle 5 and 6 def shed less.....
Shedding has slowed right down now and, shhhh 😜....... But I think I've some new hair at the back!?
My hair was a shoulder cut Bob when I started and it was quite thick. I've lost (though hubby and friends still think different!) about 60% of my hair. BUT it's still there! AND I can go out without hat when weather fine!
PLEASE don't get too stressed when you shed, you WILL lose hair, but hopefully like me, you WILL keep it too..... I know this is easy for me to say now, I'm on the other side..... Be gentle with your head and hair. Simple shampoo and conditioner, comb minimum and no styling products or straighteners.
I kept telling myself, ok, that's gone, but ive still got this on my head.... If I hadn't used the cap I would've lost it all!!?!!
Something I couldn't bare thinking about!! I admire those who shave off their hair and go bald and proud. But that wasn't for me!
Keep going mate! Yes it's not for everyone, not everyone is lucky to be offered it or have access to it and yes it doesn't work for everyone..,... But if you don't try you'll never know or may regret it?
Here for you Helen xxx message me if want xx hugs Tina
Helen, once I'd got past the first 10/15 minutes of it being on, it became bearable. Think this is the 'norm' for others too? Though Each cycle, for the first 15 minutes was definitely harder due to the thinning hair..... but I just gritted my teeth and focused on getting that time over!
I wore a fleece top, had towel draped round my shoulders and only needed a blanket on my legs for the last hour or so. I also had my legs up to help get 'comfy' And had a hot drink part way through (though offered regularly). I tended to drink the squash I took with me. Visited the loo before it started and always desperate for wee by end of it!! Think it plays on mind, needing a wee and being attached to the machine! I tried hard not to think about it! But I know if I was really desperate I could've gone!
Unit staff were brilliant, regularly offering hot drinks, biscuits, chocolates or even cake. I managed to eat one of the cup cakes I took in, (to share with others my last visit!!) even though I had to break it into pieces and suck it! When you've company to chat to the time does go a bit quicker. When I was on my own I flicked through the magazines I took with me or used my iPad. Tryed to lean back on pillow and close eyes when I felt tired or sometimes emotional.
Hope this helps xxx Tina
Helen I'm lucky not to have any bald patches. I expected it to be lot colder first time round.
ive managed self control in the twiddling department, but mainly due to hair texture just not feeling the same! 😏
Second cycle Tuesday? I found this one was where I had more loss on washing.
My hair was my best feature, and my eyes. Both look **bleep**e now. Lashes hardly visible and brows very thin. Loss of my hair my fear too. Some may say vain? No, it's our identity! I'm not the same woman I was. Look in mirror I see my dear old mum, at times I'm sallow, sunken eyes, awful colour. I look old beyond my years, just turned 50, look at feel more like 60! Brain still says I'm in my 30's..... Body and mirror def say something else!!!!
This last week following cycle 6, my face has got puffy! And I've a roll fat under my chin!!!? Hopefully when steroids out of system the puffiness will go?! Flushes are awful. I've also put on weight during chemo. xx
Ive downloaded this Vicky to refer to...l thanks, very helpful xx
Helen it's not easy..... Week after treatment I really felt that I couldn't go through it all again! Just kept thinking about the discomfort, cold, time sitting and the smell of the rubber and conditioner! 😖 I'll never use Dove again!!
But by the time the day came to go through it all again I was feeling more positive and bloody determined to stick at it!
When I got home from cycle I rinsed my hair in warm water first then gently washed it. I'm using Simple shampoo and conditioner. Not bought anything special, use a very wide toothed comb and try to only comb it once a day. Though Cycle 1 & 2 was told not to wash for 48hr.... (These days upset me more as my hair felt awful and I could still smell the cap and conditioner! 😖)
My unit nurses went on a refresher course for the Paxman system by time I was at cycle 3. Advised I could wash straight away when home if felt up to it. The length of time before and after it had to be on head had slightly changed too. My nurses were fab and made sure I was happy that it was tight enough for me and felt it was on ok. I tightened the sides and strap as much as I could bare.
Im overdue a wash 😜 As I've last washed at after treatment last Friday 1st..... But I'm not going anywhere, I'm on my own at home and saving my wash for tomorrow! This is so it looks half decent when I go to my appointment Tuesday! 😂 On plus side, very little shedding now. Hear some use a dry shampoo, though I'm not sure about the brushing of this out? Also, my hair is very dry and I don't want it to look worse!?
Biggest thing I'm missing??? Twiddling! Ive twiddled my hair since a child, when I'm tired, bored, stressed..... Can't wait to get it back into condition to play with it again!! I've also noticed some new curly hair at side of head and near fringe 😂 The grey is getting me down but it'll go..... Soon as!! Happy to answer any other questions Hun xxx Tina
Hi Helen..... Don't panic.... But more than likely Hun. I had a fizzing feeling on scalp and at times could actually hear it!? Got tingly, sore hot feeling too.
Second chemo after wash was probably the hardest for me and I sobbed my heart out fearing it wasn't working for me. 😖 It slowed down after number 3 FEC. I thought T would be better, but it stil shed. It does get harder to bare each time due to hair thinning. I have my saved hair in a bag and it helps to see though ive lost 50-60% it's still hanging on in there and I'm not bald!!
Yes it's thin, dry, brittle, grey, messy, unruly, frizzy and quite frankly a mess most of the time!!?😂 But on initial wash, dry with gentle cool dryer it looks ok. And it's mine still! Chemo hasn't taken it!! 😜 I do wear hats outside as my head gets cold. Hoping it's going to start growing over the next Few weeks now my chemo finished last Friday 👍🏼 It seems to have worked for me and I'm glad (though wasn't at time of treatment!) I persevered! Can't wait to wash itbproperlybwith a bit more pressure with shampoo that smells nice!? Or get it tidied up, even if I have to go get a dry cut!? Good luck, keep going Hun xxx Tina
You lucky girl! I was already grey-ing by your age and I'm totally grey (not white dammit) at 46!!
👍🏼 thanks Ali-b... I'll check that out! ☺️