Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Hair falling out

Tamencio
Posted by

Am I being really silly, but after my second round of chemo my hair has fallen out and it has hit me hard. I was warned by the oncologist and CNS nurse that on this combination of drugs for womb cancer it often happened but it psychologically has been such a shock. My son who is nearly 12, lovely boy that he is told me I was beautiful  which after he went out with his friends to play made me cry harder. I have bought hats and am going to see the Macmillan hairdresser at the Bexley Wing in Leeds tomorrow.  I just wanted to check this out with everyone. Thank you

Tamencio

flowerlady
Posted by

It's not at all silly. Seems so unfair that not only is this a rubbish disease, but the drugs that help us are so horrid too. I hope you feel better after seeing the hair dresser xx

Flowerlady x
Gobaith
Posted by

Hi

Not at all silly. It is a huge shock and having a good cry sounds like just the thing to do. I was never really into my hair, it was just hair until I lost it all and then I realised how much it meant to actually lose it. I too have womb cancer and lost all my hair after my first round of chemo - just as I was warned. The wig I had never really filled the gap and so scarves and hats were my cover up although that did make me stand out from the crowd with a cancer label. people were also a little rude and would try and touch my head - not on! My daughter was mortified but after a while she got used to it and she eventually accepted I was in the playground with a scarf on. What a gorgeous boy you have to be so kind and sensitive, that's melted my heart today. 

Please be kind to yourself - there's so much to deal with. 

My hair has now grown back but it's very different - I now resemble a poodle with a perm! Slowly getting used to it, but learning to recognise I'm changed with cancer and so embracing the new look me. I hope you learn to love your hair free time but please take all the time you need to be upset and come to terms with it - you will. 

I'm sure your son is spot on - you are beautiful. 

xx

Clare
Tamencio
Posted by

Thank you Clare

i became ill in August and diagnosed in September after not seeing a GP 10 years and after my husband passing away last year from pancreatic cancer at 55, so it has been a massive shock. You have made me feel much better and I will try and be kinder to myself. I am trying to take each day at a time and be a good mum to my boy. However I am still grieving (and only just realised that) for my husband and my independent life as a children’s worker of 30 years that I have now given up. So I suppose my hair falling out was the last straw. Thank you again for your lovely e mail it cheered me up no end. Xx

Tamencio

Tamencio
Posted by

Thank you flower lady. 
I am looking forward to seeing the hairdresser and I think it will be helpful. Thank you so much for your kind words and support.  

Tamencio

Tinalay
Posted by

Hi Tamencio, I'm with the others, it's not silly at all. Even if you don't feel it's your crowning glory you can hide behind your hair a bit and losing it leaves you very exposed. I found losing my eyebrows and eyelashes too completely altered my appearance and knocked my confidence. I chose a wig before I started chemo when I looked very well and a lot of the time just felt I couldn't carry it off. It took a while to find a head scarf I was comfortable in, and of course it's a dead give away.

It's a bit like adding insult to injury, there's already so much to cope with during chemo, you have every reason to be upset. I was shocked when my hair grew back grey and very curly but got used to it, although it's completely straight again now and I've coloured it red for the autumn.

Your son sounds like a lovely, lovely boy, so many adults don't know how to react, you must be very proud of him.

I'm so sorry you're dealing with all of this and the loss of your husband to cancer, life can be very cruel.

I hope the hairdresser can help you find your mojo tomorrow, good luck! xx

Tinalay 
Ginajsy
Posted by

Hi Tamencio

Not silly at all. I was a little upset about loosing my hair, it was a while after being diagnosed so maybe not extremely upset as I might have been straight away and I lost it after my incurable tag, so might have also why I was not extremely upset. I went and got a wig as soon as it started coming out. Mine came out initially due to full brain radiotherapy, so for me I found it came from the parting downwards (might be different to chemotherapy loose) so it was so noticeable straight away and just came out in chunks once it started.

I hate though anyone not seeing me without my wig on I feel so ashamed (maybe because I live alone). I would also suggest now it's colder to get some sleep hoods for night or just when you are relaxing at home. They are much more comfy. I have quite a small head and even though I tighten the wig find it goes behind my ears and presses and makes them sore.

I hope your wig choosing goes well. I stuck to a similar colour and style to my normal hair, though I have been given a blonde one too which I have not tried yet. Maybe one day 

Gina

There are no perfect people, only perfect intentions

♬I should've been more than this, I was gonna be something big, But I never did anything at all ♬ Dan Owen - Icarus
Popgate
Posted by

hi there oh God my hair falling out was devastating for me mine started 2 weeks into chemo I thought it would not start until further into treatment so that was the first shock how soon it started to fall out it's such a job to sort your hair out mine is fine hair as well so someone who has thicker hair wouldn't be so noticeable still using the very painful cold cap treatment with chemo as well now I am 6 months in missed 3 due to bloods not right but considering how early it started to fall out it's the crown that is bald managed so far to keep rest so I think it's worth the pain every week you have to come up with a system that works for you I only wash mine once a week and use a huge open tooth comb to brush a small amount of hair and hold on to that hair as you comb very important as any amount of stress on hair will fall out also don't laugh hair nets I wear them 24 7 they are brill for holding hair in place and when I wear my long hair scarves and hats they hold hair in place brill also at night as tossing and turning stressed your hair as well for me having cancer no one knows it can tell you have it until your hair eyelashes go then it's so visible to other people that has been such an issue for me i find it so hard you can't hide it from people so embarrassing and humiliating always what other people think and see was hard enough to garden on the front and face the neighbours never mind going into town but I have battled on and trying to look as normal as possible i went for a wig fitting yesterday cried my eyes out when they put a long wig on me it was like seeing the old me again felt such a prat being so emotional you can't help it can't wait to pick up on Mon so excited hope this info helps people xxxx

Flippen
daloni
Posted by

Hi

I don’t think you’re silly at all. Losing your hair is not only losing part of your identity but also a signal to the world that you have cancer. On top of that, it’s uncomfortable in cold weather as hair is very insulating. I can also quite see how it’s the last straw for you. Life has been very cruel to you and your son. I am so sorry for everything you’ve had to face. 

I have lost mine twice now, once in 2014 and again this year. I couldn’t get on with a wig so opted for scarfs both times. I quite often went bald in summer and even embraced the freedom of no hair. There’s a photo of me in the guardian in full chemo hair loss glory when I wrote a piece about why womb cancer is so rarely discussed. Google Daloni + womb cancer + guardian and it should come up. In winter, I mostly wore a cashmere beanie that was soft, comfortable and warm. I also did a great line in African head scarfs, making my own from fabric I had and looking up how to tie them on you tube. I totally rocked that look. 

My girls, aged 10 and 13 at the first hair loss, were like your son and told me I was beautiful anyway. But my younger daughter did not want me in the school playground without a scarf on. 

Another thing that helped me was learning to do my eyebrows when I had none of my own. It makes such a difference to how I looked.  I went to a workshop run by Look Good, Feel Better. It was fab and I came away with a cracking goodie bag. 

My hair is growing back well now. I had the mad chemo curls when it grew back the first time (they grew out and my normal hair returned) but this time it’s grown back more or less straight. I have had it cut into a rather fabulous pixie cut that I’m told suits me really well. I feel very glamorous. I am sure I would never have had the guts to go this short by myself.

You will get through this but I do understand how tough it can be.

Lots of love xxx 

Tamencio
Posted by

I so appreciate the support I from you and everyone else in the group .I was really surprised at the visceral response I had to my hair falling out. I have got some hats to wear but may at least try a wig, but like you I am not sure how I will get on with it. The loss of my hair has also brought me face to face with how much my world has been turned upside down in the last two  months and the new reality of life I am dealing with  . Thank you and I send lots of loving hugs. Love xxxx

Tamencio

Tamencio
Posted by

Hi Flippen 

thank you for your supportive words and describing your experience. 
lovex

Tamencio

Tamencio
Posted by

Hi Flippen 

thank you for your supportive words and describing your experience. 
lovex

Tamencio

Tamencio
Posted by

Hi Tinalay

it was great to read your view of things . I had thought (intellectually rationalising my hair falling out) that I would wear hats and scarves. Thinking about it a bit more I M going to consider a wig and go from there. Take care xx

Tamencio

Tamencio
Posted by

Hi Daloni

i Googled you and found the Guardian article which was really helpful. Take care xx

Tamencio

fighting girl
Posted by

Hi 

i found losing my hair really odd ,never had good hair ,but so wish i had it back 

it is really upsetting ,not vain and not silly 

in my nhs hospital there is a special lady who orders wigs and fits them for you ,if you are eligible re drug treatment and side effects 

i lost my hair all over my body ,some has grown back but not all ,i have to fill in my very sparse eyebrows ,but feel like me when i do ,i went to a feel good look good talk at our local Macmillan ,it was excellent ,recommend it

my hair has grown back with a large very thin area in the front ,so i still wear my wig ,i feel very comfortable with it ,and never have a bad hair day ! 

I tried hats and scarves but felt self conscious and feel more confident with my wig ,it is a different style to my real hair ,I don’t care that people know i m wearing it 

Good luck

xxxxx

janet