I have read on a lot of posts about a lot of people being able to have some money refunded if buy wig privately and not have NHS wig. I have spoken to my BC nurse and she has spoken to the ‘wig’ people who I am to have an appointment with to sort out an NHS wig and they know nothing of this and say they have never heard about this. Can anyone point me in the right direction to find out more. I live in Peterborough, even though know have read different amounts refunded in different areas still would have thought would be known of here and be countrywide.
Any help would be appreciated.
Also to say hope everyone is doing well and send lots and lots of best wishes.
Hi Julie, I’m in Ramsey, so not far from you. I haven’t heard anything about a refundable difference either, and just today ordered a red bob wig from Hinchingbrooke - ironic then that on our return home, my hair suddenly started coming out in handfuls - and this a mere 13 days from first chemo session Thought I had ages to go yet.
Let me know if you need to talk or anything, being local we could perhaps hepl each other.
I did not pay anything for my wig, which was arranged for me via the Stafford hospital chemo ward.
and I must it is fantastic - but I have not had the courage to wear out in public!
I am also able to have a second one after 6months if I am still on treatment!
I am sorry that you are having to contribute to your wigs as it is an other financial worry.
I am sure that there is a web site called wigbank and they do wigs and they are charity run.
My hair started to come out in handfls aroued the same time - I found this so distressing and got more nd more upset specially when peole say
“its just hair!” yeh but ITS MY HAIR! so I took the plungs and on day 16 got it all shaved off - just got a cm of fluff all over! I feel alot better not stressed watching it fall out or block the plug - I think it was because I could control when I chose to shave it! GOOD LUCK.
Sending cyber hugs & kisses to all.
Take Care
Mel
x
Im just down the A1 from you, St Neots, my local hospital is hinchingbrooke and there own wig department was great, why dont you give them a go, they can even put hi-lights in the wig for you and your not rushed at all. Im only 37 and they had plenty for young and old.
Mel - I did get one great wig from wigbank a brilliant idea, (Agnes is great) thank you for the post though. Feel really vain sometimes “going on about the hair” but as you say it is “our hair” so many people on this forum had said to cut hair shorter helped and I thought “No I can’t” I “had” hair 31inches to my bum, but did cut 2 weeks ago to my shoulders and “Yes” it does help (prob not for everyone) but I now don’t feel so bad more in control. The one wig I got from wigbank is great and I am now hopefully going to “sort of!” look forward to wearing it. Thanks for the words. Hope you are ok? Take care and hugs
Nikki - Know what you mean, thought I had a lot longer of my own long hair but like you before 2nd chemo my hair started to fall out about 4-5 days before 2nd chemo in big clumps. By the way have located other people quite close on this forum and we are going to meet up. But here for you if you need a chat anytime or like other two want to meet up (really don’t have to). Just thank you for the post. Hop the red bob is looking great. Take care xx
Tracey - Thanks for the info about Hinchinbrooke, had a wig I returned because (god so vainly colour looked flat and would have absolutely loved it if a bit of colour could have been put in) is that the same if it is a synthethetic wig though? Have read a few of your posts and found you very helpful and very Honest. Thank you again for replying to my post it is appreciated, really happy you found somewhere really good, take care Tracey
All responses appreciated, and sorry if it sounded a vain and trivial post, I know there is so much more for us to deal with and my thoughts are with you all, and if I can be there for anyone I will try to be.
About 2 years’ back, a young woman with very long hair made a very pragmatic decision prior to chemotherapy and the cold cap, to have her own hair cut short and the hair carefully kept for use in her new wig.
She came to this decision after hearing that :
*for most who could stand it, the cold cap avoided baldness, provided hair was not too long (so allowing the cold to penetrate to the scalp during cold cap treatment and in general, less drag on weakened roots)
*even those who benefited from the cold cap had some gradual hair loss.
Obviously, going to a private wigmaker and bypassing the NHS was not a cheap solution, but her hair meant a lot to her and I could understand her feelings regarding this. If you do get frustrated by the the NHS, remember you can at least get a VAT-free sale as it is for a medical reason.
Thank you Holybones for your post. Did think of either donating my hair (but could only find sites which would take uncoloured hair and unfortunately 1 month prior to dx had hair highlighted (which I hardly ever do, murpy’s law) also thought about having made into wig as you mentioned but when started to come out a lot, while my 3yr old was in bath, I cut to my shoulders, did this at that time as new couldn’t get upset infront of my little boy as not fair on him. Didn’t think I would feel better cutting short first but surprisingly I do. Had cold cap last 2 chemos but think will leave it now as know it is going to all go and may be better to get on with it and concentrate on more important things. Thanks again and take care,
Julie - yes, that would be great. Just to see other people who are going through it and know what you’re talking about - my bf is fab, but he is pushed to his limits at the moment with having to cope with all of this with me, and it would be great to feel I could rant without upsetting him!
Twelch - got my wig today from Hinchingbrooke - but disappointed cos it’s got broken bits over the crown and parting, which they said was “just how they come” - £57 and I think they shouldn’t! Sounds vain I know. Tried it on at home, just too itchy and hot with the flushes too…will have a look at wigbank, sounds like a good idea! Will now go and look for that post that’s been put up for me…thanks!
Otherwise feeling better today than yesterday…continuous hair loss notwithstanding…had another of my awful migraines with continuous vomiting all day, and because I have rubbish adrenal glands, I have to take hydrocortisone or else go into Addisonian crisis (ie, I die, just to complicate it all further! Oh, and similar with thyroid, so I have to take T3), so if I throw up I’m in trouble big time. Had to get doc out to do emergency hydro injection, desperate ill, and the pain from my head…am asking for a neuro referral, because these headaches are getting worse not better, and it was the same before chemo, although obv that won’t be helping matters any.
Also on Sunday found another lump in my other boob. It’s hard, painless, and I fear the worst. I don’t know if I can go through the whole thing again with the other side. The lymphoedema risk thing is bad enough on one side, how the hell do you have a normal life if you’re compromised on both sides?
Sorry for bringing a downer to what was being a positive post!
Nikki xx
PS Julie, PM me if you can, would be really nice to meet some other local girlies with this x
im really shocked youve come away with something you dont like, i spent ages in there and although the woman was alot older than me she was really patient and advised me on styles and colours, i was really happy, is it a longish one?? could you wear a head band with it, Accesorize do some great one’s i wore head bands to break the wig up a little, i didnt feel as conscious with it on.
No, it’s a copper-red jaw length bob with an insane fringe that would def need cutting to make it look normal - it’s lopsided, doesn’t seem to know if it’s supposed to sweep sideways or go straight forward, is unlevel either way, and then there are all the broken bits along the crown and parting that make it look tatty already. The first wig lady was an older lady, but quite insistent that she thought I should have a short, black with blonde tips horror that I wouldn’t be seen dead in, second lady who covered first lady’s hols was more patient and didn’t try and foist anything on me really, but I felt obliged to get one from them because I’d asked them to order in three different wigs (two the first lady liked and the bob that I thought I liked - my old hair was a short bob), and I felt like I was being a difficult customer and had taken up so much of their time.
BUT we really truly cannot afford £70+ for something I’m going to hate, so I’m going have to grit my teeth and get it back to them! Hopefully the wig I’ve been offered will be nice - I’m just grateful someone has offered me the loan of it!
Sorry not been on for a while, not been well over last week. Got next chemo Monday but unsure if will be able to have as blood count low so may have to wait till Wednesday. Would be great to meet up. Sorry to hear your not happy with your wig. I was advised to go onto ebay shop ‘Vogue Wigs’ they are brilliant and really cheap. £20>23. Arrive really quick. Let me know when you are on line and we can have a ‘chat’.
Hi Julie, sorry you haven’t been well - I can empathise only too well, you poor thing. So far so good with my 2nd chemo, they’ve sent me home with 6 days worth of Dex and a pump system for the cyclizine anti-emetic, and I’m def feeling better than I did first time round. They’ve also given me 2 weeks worth of fluconazole so I can prevent that horrid oral thrush from kicking in on Sunday!
Are you around now?
I’ll keep checking back. Don’t know any of the rules about chatting here, you’ll have to help me out!
Hi there,
well, I managed to have the wig people visit me at the hospital! It was going to be during my chemo, but that has been postponed cos I’m too poorly to take it
However, the wig lady was great, brought a huge selection. First wig was identical to a style i had a few years ago, so a definite possibilty, the second was just so not me wig number three though - oh, now that was IT. Really suits me - if my hair grows back the way it was i’d seriously consider keeping this style!
The only problem now is - i have titanic hair - leaving the ship in droves!!!
scarves are still a nora batty situation - considering trying a knotted hanky. I do have a compo hat for indoors though and a knitted one for outdoors.
But I do love my wig
Hi Julie, I hope you’re feeling a bit better now and that things have settled down a bit. Can you suggest another site that we can actually chat on? I’m interested in meeting up if we can both find a time that we’re both well enough to do so, and also linbob has very kindly offered to send me her old wig but I don’t know how to get my personal details to her without having the mods remove my posts - I’ve already tried! Hope to hear from you soon,
Hi Angel,
I have had two free wigs from the NHS, the colour was great but the style was a bit “Texas big hair”!! so went off to my normal hairdresser who shved my head and styled the wig for me. Looks great now its been cut professionally.
Good luck and take care
Allie
Thought I had ages to go yet.
wig number three though - oh, now that was IT. Really suits me - if my hair grows back the way it was i’d seriously consider keeping this style!