I am feeling soooo down.
Three years ago i was a slim, attactive red-head and now i am a fat, ugly bald monster.
I feel abbandoned now by my ‘cancer team’ after my fantastic treatment from them. If chemo had made my arm drop off i am sure they wouldnt have just ignored it so why cant they understand how distressing having no hair is. I cant really be bothered to do much about my weight and other stuff because whats the point when i will still be pig ugly without my hair. I have just had to refuse to go to my hubby xmas do because it would mean buying a size 18 dress and wearing a wig that now resembles wurzle gummage and really looking like someone i vowed never to look like.
I cant believe this is me. I could very easily just stay in my house and NEVER go outside every again.
Hi Pineapple,
I too finished treatment in sept this year, have some hair but it is too short to feel comfortable going out without the wig, which is now getting a bit frizzy in parts.
I have put on weight which some people have remarked upon , oh you’ve put some weight on haven’t you !! Oh really don’t you think i have not noticed !! Now in a
size18 jeans !! but still too knackered to do much exercise.
Also have started back at work after 9 months off, which is tiring, my brain seems a bit muddled too.
This season does not help with parties etc, i too just want to get home , take the wig off and hide.
Also still having pain and tenderness in my radiated breast, due to see surgeon in Jan 09, not seeing oncologist till jan 2010 now.
I,m sure thing will improve and hair will grow but like you not fast enough i feel.
Best wishes to you , lets hope next year is better.
Sarah66
Hi Sarah, you obviously havent read my other moanings! Taxatere has left me permently bald. I finsihed chemo almost 3 years ago.
I am sick to the back teeth of people (strangers) asking me when my tretament finsihed or how have i found my treatment and people thinking i am on permemnt chemo. It effects most of my life and feeling like i have been abandoned with this sodding problem.
I am anoyed with aventis sofia for still NOT disclosing this as a possible side effect and for them refusing me any financial help with money for wigs or treatment for hair loss.
Just last night i was at a jewery party and felt my sodding scarf moving so went to tighten it. As i undid the 2 bits to re tie a freind walked by me and tickled under my bloody arms and my scarf almost fell on the floor.I just feel such a freak and that will never change untill i have hair again. iI am sick of wearing wigs and feeling like getting a stcker to put on all my headscarfes say ‘what the F*** are you looking at’, sick of being stared at by starngers.
As you say this party season is a damn nightmare, i am declining all partys etc as i feel so damn ugly.
On Friday i wrote a winging email to my onc so he will be Pissed off with me this morning when he reads it. Non of the medical proffesion seem to grasp how this is affecting me.
Hi Pineapple
I for one had no idea that permenent baldness could happen. Can’t you sue them or something? This is a disfigurement - they have scarred you for life - not just your body but your mind too!! They are making millions from their drugs they can afford to compensate you surely???
Sorry to hear how this is affecting you - it would me too - why should we shut up and be grateful when we are left feeling like sh*t? Why not whinge to the Onc - he should know how you feel - smug bast***d in his ivory tower - he should help you more to try to get compensation I say!!
I hope you can get some form of satisfaction after 3 years. Hugs ((())).
Jo xx
Thanks Jo, he told me afew weeks ago that since he decared my problem to them there are cases of it happening all over the world. Not common BUT it does happen. I tried ages ago to get them to cough up to keep my in a wig for the rest of my life but they said they were sorry it happend to me and yes it does happen on some occasions but no they will not financialy compensate me in any way shape or form. I cant sue them, how can i possibly take on a massive drugs firm. Although i have a freind over here in France who offered to be my campagn manager so i have emailed him to see if his offer is still there.
As far as my ‘team’ goes they have been great and wouldnt want any other docs but i get the feeling that now i am healthy they think they have done their job and thats it. My specialist says she now has to tell her pateints that permanant baldness could possibly happen, but in the meantime i am left to live with this dissfigurment.
Hi Pineapple
How about the small claims court? I don’t know how it works - but I know it is for the ‘little people’ against the big ones. Hope your freind in France can help.
I know what you mean about being abandoned - my treatment is over now and the yearly checkup is scant cover - but at least with me I have my old life back (almost).
Good Luck!
Jo xx
I am not sure if there is the same thing over here. Hopefully my freind will want to take this on.
Dear Pineapple,
I am so very sorry that you have been left with this enormous burden. Having lost hair temporarily I can empathise, but I don’t think any of us can realise the enormity of your situation.
I think there are 2 issues. Firstly, you need proper acknowledgement of your situation and recompense from the drug company. Frankly, I wouldn’t have a clue how to go about this, but I suspect you will need somebody behind you.Perhaps there are already organisations who could help you as other patients must have been in similar situations with unreported side effects…
Secondly, the wig thing. You’re still in France aren’t you? In the UK Alopecia patients get free wigs for life. Is that the situation in France and if not, could you come back and see someone in the UK? This would be a ruinous expense and it’s ridiculous that you’re having to pay for them yourself. Is there a French equivalent of Macmillan or some other cancer group who would help with the cost? What happened when you went to the Tricologist? Didn’t he/she offer some help or at least money for wigs?
My heart aches for you, but I don’t know what else to say except you’re often in my thoughts as I read every one of your posts.
Best wishes,
Alloway
I know we arent supposed to put links but this one is relevent and is to another breastcancer site
community.breastcancer.org/forum/23/topic/701423/reply#texteditor
I knew i wasnt the only one - just look at those stats!
please leave my link on admin
HI pineapple
alopeciaonline.org.uk/index2.asp
I am sorry to hear you are having such a distressing time with your hair loss. I don’t know if you have seen this site, but I pass on the link as you may find some support or useful information there. Do keep posting here though, and if you feel like talking to someone about these issues then give our helpline a ring.
Best wishes
Ann
Thank you Ann, i will look at that now.
I have read through alot of the posts from the same lady on the link i have put on and she says her onc has looked into it and its between 4 to 5 % of taxotere users has permanant hairloss ! i find that staggering!
Hi Pineapple
I read your post earlier and really felt for you. I’ve just had what should be my last Taxotere, have virtually no hair - too early to tell whether it will reappear or not. Hope so…
Anyway, I just wanted to say that altho’ I’ve never met you, I bet you don’t look half as bad as you think you do.
People notice far less about us than we do ourselves and, on top of that, we’re our own worst critics, too.
Don’t stay in - get a super dress in whatever size you need and go to the ‘do’. Let everyone else think what they like.
Another thought. I think I read on another of your posts that you are taking Femara. I took it for 7 months prior to being given Taxotere and it thinned my hair drastically (it said it might do this on the packet), so I had less before the chemo started anyway. Do you think there might be a connection between taking Femara and your hair not reappearing? I took Exemestane before Femara and it didn’t affect my hair.
X
S
Trust me, i do look as bad as i discribe. I only started femara this June.
I have now made my sticker to put on the front of my scraves!
“WHAT THE F*** ARE YOU LOOKING AT AT” i will let you know what reaction i get when i can bring myself to go out of the house.
Hi Pineapple
i hope this doesnt upset or offend by suggesting this- but there are other ladies here who are dealing with near permanent hair loss due to secondary cancer and it is really hard for them too, i think counselling has helped some of us deal with these things- perhaps you need to talk to someone about this as you have been through terrible experience, and then to top it off have been left with a permanent reminder of it every time you look in the mirror, maybe your medical team can help you with this?
As to your friend tickling you - well thats not great is it- you feel vunerable and then someone gos and does that? really i am sure you look fine and nowhere near as bad as you think - and anyway the whole concept of having to look a certian way is really not on- we have been ill we have or are going through treatments that some people can’t even tolerate and yet we exepct ourselves to all look great, size 8 and happy and perky , well it just doesnt happen,
Anyway I have rambled on a bit, I hope you can find some help with this.
take care
cathy
Hi pineapple
I can remember you from other threads chipping in on occasion saying" my hair hasn’t come back" …
My heart bleeds for you as I am going through a wobblett myself because I just look different from how I used to … and i have hair - even if it does feel like someone elses … like you I think “where have I gone?” …
What I am about to write may be helpful or may get right up your nose … I could understand if it does
It seems to me that your treatement has gone well as it was 3 years ago and you are still with us! BUT and it is a BIG but - you have no hair. Yo now have aloepcia (apologies if spelt incorrectly).
I think part of the problem is that you are spending a lot of time on here with all of us who are temporarily challenged in the hair department but it does come back in some shape or form. So you must be sitting there screaming “where’s mine?” and “stop moaning - at least you’ve got some!”
Ithink you should try the aloepeia site - I looked on there for ideas when I thought I was going to go bald and if you lok objectively some of those women are really beautiful without hair. In some ways having a dialogue with them may help you a lot.
Perhaps for now you should accept it’s not coming back for a bit and look at things a different way. At least you can “do slim” - perhaps if you took more care of yourself and could learn to make the most of what you’ve got then you will feel better about yourself.
I’m not saying it’s easy - it isn’t - none of us would have asked to be butchered, poisoned and fried through choice - but it is what is is and all we can do is accept it and make the most of it.
For what it’s worth - a confession - I always look at bald women - I know I shouldn’t - out of curiosity - I find it fascinating - and many of them look so beautiful - I know it’s rude but I can’t help it.
not all attention is bad you know … wait another 20 years and I’ll be glad of any!
Do you have eyelashes by the way ?
Good luck
Feel freet to SHOUT back!
Love FB xx
Hi Alloway, thanks, they give you 150 Euros for a wig every year if you want it but i cant wear the wigs you have to buy with that amount. The wig i got before cost just over 550 Euros and it was their extreme comfort one becaus ei have to wear it such a lot i needed a really comfy one. My friend came over and gave me her NHS one that she had and i honestly couldnt wear it for more than 5 mins.My feind tickling me -i know sounds patheric as a moan- but i had my back to her and she just did it as she walked by while i had both my arms up tying the scarf. My natural reaction was to just and put my arms down and of course the scarf was then delicatly balancing on top of my head.I know it sound daft but its that sort of every day life thing that makes it impossible to forget.
Cathy, i know what you mean but it doesnt help my every day life. I always feel guilty moaning about my hair when of course my first thought is all the brilliant ladies out there with secondaries.But as i dont have secondaries (to my knowledge) why should i have to live my life looking like i am on chemo - my lashes have grown back abit, if i put 10 coats of mascara on you can justa bout see them, but no brows worth mentioning. So i always look chemoey and because i have got so fat my bald head looks like a pea on a drum. I am not depressed and wouldnt take anti depressants not unless they would make my hair grow back.! Trust me FB - i do not look beautiful with a bald head i can assure you of that.
I suppose what gets me down (apart from having no hair) is the fact i feel like i have been just left to get on with my permanat problem and bloody aventis sanofi have just said sorry when they could easily afford to send me somewhere for tretament or buy me a good wig every year. Also i want them to include in their possible sideeffects that their drug does cause permanat hair loss in 4 or5 % of their pateints. i hate their non discluse. When i asked them for their stats they ignored me.
Forgot to say, that i havent been to a dermatologist firstly its private over here and cant afford it plus, as my onc say, they wont have any experience in my problem - its not the same as aloplecia so they arent going to really know what my problem is and how to deal with it.
Hello again Pineapple
I was really sad to read on your other thread about Taxotere that your hair still hasn’t come back - especially when you were so happy a few months ago after the brewer’s yeast seemed to be working.
I have taken throughout treatment - and still take - a tablet called ‘Hair and Nails’. I get mine online from Healthspan but I see similar tablets in the shops as well. One of the ingredients is Biotin which I seem to remember the women on the American BC sites say is excellent for hair growth. Have you tried Biotin?
About wigs: my expensive wig was about £100 and is really lovely. It’s man-made and therefore can be washed very easily and keeps its style. Everyone admired it while I was wearing it. But - you may have read on the other thread - I also got one from WigBank for £15 - and that one became my favourite and was even more admired ! Buying it was very easy - their website shows examples of the wigs they have and I simply sent an e-mail to the lady who runs the Scottish branch of Wigbank telling her the type of wig I wanted and she was happy to send me wigs on approval until I found one I liked. Why don’t you have a look at their site? It would cost you a bit more postage being in France but it’s still a cheaper option.
Both of my wigs were pretty comfortable as well.
Pineapple I really sympathise with your situation and I keep hoping that your hair will come back one of these days.
Thinking of you
Lots of love
Anthi x
Hello Pineapple,
I have followed your threads too, and can’t tell you how much I sympathise with your loss of hair. Mine is back, but nothing like it once was. I finished Taxotere a year ago.
So, assuming that you can do nothing about the hair situation other than looking for wigs online or wearing scarves, perhaps you could concentrate on the other things that are making you feel ugly, and which you CAN change. Losing the weight you hate so much would help, so perhaps you could tackle that - I know you say you can’t be bothered, but it could make all the difference as to how you feel about yourself. My own eyebrows have returned but are very thin and sparse, so I use a product called Brow Zings by Benefit which is a coloured wax and powder duo and they do a great job on my brows. It’s surprising how much difference it makes to the face when you have lovely brows to frame it. Alternatively you can have them tattooed on, as well as eyeliner, which gives the impression of fuller lashes.
Nice wigs needn’t cost the earth, I had a short blonde one which I bought from Suzi Wigs in Lakeside, Essex, they do have a website. It was a mono-filament wig which made it more comfortable, and cost about £120. Very easy to care for too.
It is indeed disgraceful that the makers of Taxotere have absolved themselves of any responsibility to you, but perhaps it is now time to accept what has happened and make the very best of the rest of your life. Don’t turn down invitations, you are as good if not better than anyone you may meet. You have been given your life back, albeit a different life, but you owe it to yourself and your OH to go out and meet it head on.
xxx
Hi Pinapple. I feel really bad for you reading your post. In this age of body beautiful, size 0, long flowing hair, perfect boobs, it can be extremely hard to be different in any way, let alone different in the way you feel you are. It drives me mad that the world thinks all woman should be a certain stereotypical way, why, why can’t we just be who we are without pressures around us all the time huh.
We are none of us perfect of course, I looked at my own body with disgust many times since first diagnosed last year, at the various scars cross crossing my, what was, a good figure which seems to have suddenly become old and saggy and damaged. With the hair issue, I guess I am extremely lucky in very many ways, once I got over losing my hair initially, I actually wasn’t really bothered and would often go without any headgear as never bothered to buy a wig. I used to smile at the starers and then just carry on. But that is me.
What I am trying to get to is that we all must deal with our own bodies as best we can, your body image now is the real issue, and that is what’s important to find a solution too. I truly truly feel that getting some kind of cognitive behaviour therapy (CBT) would really really help you deal with the triggers that make you feel so crap about yourself. It is not what we feel is wrong with us that is important, it’s how we deal with it that counts and from experience I can say this kind of therapy really works.
I am sending you {{{{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}}}}} and truly hoping you can find a solution that puts your mind at ease.
Nikki