I need to know im not alone and that there are others out there just like me who have had chemotherapy and lost their hair and have had a lot of frustration when it comes to cancer...
Hi lydia
I am a bit of a fossil but i have just finished chemo and am currently sporting the non hair look! Would you believe my best friend is a hairdresser?
Cancer can be very frustrating and i think all of us would have experienced that at times in our journies.
Julie
I think frustration and cancer go hand in hand. No! You aren't alone. I hope you get the support you need either here or another forum. I've found the cancer council phone line invaluable when I just need to talk.... sometimes it's nice to let it all hang out when talking to someone who has no idea who I am.
I'm probably not as young as you (I'm 40) but I have young kids that keep me young at heart 🙂
The list of frustrations is long and varied.... often it depends on my mindset for the day as to how the frustrations annoy me. Tiredness, tiredness and more tiredness. Lots of other things that you really don't need to hear me whinge about but each day post treatment gets better...just a little bit at a time. Some steps forward, the occasional step backwards.....
Hang in there, I hope you take more steps forward.
Thinking of you.
Sharon
xxxxx
Hey Sharon
Thank-you for your response. I love that you understand about the frustration. My friends just don't get why some days I just am, and then it makes me more frustrated and we go around in circles.
I just joined this service yesterday and I am finding it really good at the moment and I am definitely thinking about using the phone services too.
Thank-you for your thoughts and same goes to
LYDIA
XX
Hi Lydia ... I am using hats, bandanas and beanies ... i found a shop that sells some great beanies. Somehow i just dont fancy wearing a wig.
Julie
ps the frustrating bits do get easier and as sharong said we need to take steps forward and sometimes backwards ... so long as we keep moving
i was very lucky in that my hair just thinned out so I could get away with some hats. Most of my friends who have lost their hair use wigs and they look great. Most of them say that although they are good it's nice to have other options so when they don't want to wear them they don't have to. I am pretty sure there is a wig library ...I think at Westmead???... where you can borrow wigs but if someone wants to clarify that then please do. And I think some health funds may pay some of the costs too.
Earlier in the year I signed up for one of the "look good feel better" sessions and they were great with ideas on how to feel better about things while having treatment. Wigs, hats, scarves etc etc etc, how to wear them, what things worked and you get a great goodie bag of makeup and skin care - well worth trying out.
take care
Sharon
xxxxx
Hi Lydia, I lost my hair twice during treatment as chemotherapy was split up into 2 lots of 3 as I was recieving different drugs. Before I started chemotherapy I knew I would lose my hair so I took control of the situation and had my hair cut short into a bob and then a few weeks later cut into a short pixie style. Tweleve days after the first chemotherapy my hair started to fall out, this was was very confronting, even though I was expecting it to happen. That day I went to a hairdresser friend and she shaved my head. After finishing the first round of chemotherapy I had to wait 4 weeks before I started 5 weeks of radiation and then waited another 4 weeks before starting the next round of chemotherapy. During that time my hair had started to grow back and I was very happy about it. It didn't even occur to me that it would fall out again, silly I know. So when it did fall out again I was devastated.
I had borrowed a wig from the tracey scone wig library in darlinghurst and wore it a few times. I found it uncomfortable and was paranoid that it looked like I was wearing a bad toupee. Early in the year when it was hot I wore scarves. Friends that I hadn't seen in ages who didn't know I had cancer thought I was just channelling audrey hepbrun sashaying around town looking glamorous in a scarf and large sunglasses. I also bought a couple of 1920's inspired hats from individual wigs. I wore them constantly during winter. I had strangers coming up to me on the street, in shops asking where I got the hat from, one lady ran after me to tell me that I looked great in the hat. Because I don't look sick people assume I'm being fashionable. Haha.
There were days when all I wanted was to look "normal". To leave the house without wearing something on my head.
My hair started to grow back 5 weeks after finishing treatment and it grew out fuzzy looking. I didn't want to have a fuzzy hair so I shaved it again. After a few weeks it started to grow back again this time without the fuzz and it looks great. When a baby is born in the Indian culture the parents shave the babies head to get rid of the baby fuzz and I think there's some other mystical reason as well which I don't remember. Anyway next time you're out and you see an a person of Indian heritage have a look at their head full of hair. ( :
It does get better.
Hiya Miss Reena
How you have handled your hair loss is pretty much what i did. I had hair down to the middle of my back and got it cut short and then when it all started to fall out i had the nurses shave it for me. It was upsetting at the time although i am quite ok with it now.
Interesting that you should mention about shaving your hair when it started to grow back fuzzy. Mine is just starting to grow back and i looked at it this morning and could see that it will be fuzzy ... my thought was that i would get it shaved again and hopefully get rid of the fizz.
Yes, it does get better. :)
Julie
Hey,
I didn't catch your name sorry. I can't explain how similar our stories are....When I found out that I was going to loose my hair I cut it into a bob also and then after my 1st round it all just fell out...same as you I was so devastated even though I knew it was meant to happen. To see my hair in my hands was the hardest thing I had to do in along time...I am a girlie girl and my hair was my all. I then did 2 rounds of treatment stopped for another operation and then started treatment again..and by then like yourself my hair was starting to grow back and I was getting really excited and then I did just 1 round of chemo and it all fell out again. At the moment I do wear wigs because I do still go out with my friends and don't really have the confidence like you to wear hats and scarf's out. Now it's just a big waiting and game and I guess I am very inpatient when it comes to my hair growing back, but I do know that it eventually will.
Hey Lydia
Did you have fun trying on wigs?? I tried some on the other day but they just dont suit me one little bit. It really was quite funny and we all ended up in fits of laughter at how ridiculous they looked on me. I can understand re the hair loss though. Even though i would not class myself as a girlie girl i did look after my long hair lots!!! I would put monthly treatments in it and only coloured it with hairdressers colour and a low bleach one. Ooooh, might be the time to mention my friend has found a hair colour that does not use bleach. If anyone is interested in finding out about this just ask or message me. I do miss my long hair, but i will be interested to see how it comes back as.
Hey Jules 2
I actually have 4 wigs at the moment and to be honest I am so over then...all the itchiness and being paranoid is driving me to the edge. Yeah i miss doing all that stuff and going to the hairdressers. I'm glad to hear you had a good laugh about the wigs 😃 good to see some humour come out of it. I am also interested to see how my hair will grow back too. Only time will tell.
Lydia
Hi Lydia ... ouch re the wigs being itchy!! That would make life hard. Must admit i even find with hats and beanies that it is difficult to get the right one for the day and am always taking them off somewhere because i am overheating. I find that happens even with cotton ones or bandanas, is sure tough to find something that you can just wear all the time. Now am thinking that is something that could be explored. We need to find a material that breathes and a design that allows for heating and cooling. Hmmmm thinking now!!
Ya gotta laugh occasionally!! I have had some funny things happen to me along this journey and have had some good laughs. Even had one of the ocologists laughing one day, which was no mean feat i believe. :)
There is a company called sodashi that manufacture moisturisers and all that jazz. They use all natural products and unfortunately are not cheap, however, they make a scalp mask which i have tried and i am wondering if you used that before you put your wig on whether that might help you. I found it very soothing after my last lot of chemo, as i had a quite severe reaction in my scalp with itching etc... Might be worth a try, or if you have a beautician near you that uses the products they may sell you just a sample to try. Or perhaps sodashi themselves would sell you a sample.
Julie
Hiya Lydia
I just found a really cool website that sells hats. Pm if you want info, as am not sure if we are allowed to post websites like that in this forum.
Julie
I have been extremely impatient. I'm going to be bridesmaid for a friends wedding soon and my hair should be long enough to look like a pixie style. If not I plan on moving around all day so that I look like a blur and people won't notice the very short hair.
I saw a plastic surgeon today as I am scheduled in for breast reconsrtuction next month and I'm feeling impatient about that. A friend recommended that I read "the power of now" which is about being in the present moment and I have found it helpful in overcoming the angst associated with cancer.
Julie I agree with you about having a laugh. It's a must to get through this. The day I had a bilateral mastectomy I went up to the reception desk at the hospital and said that I would like to check in to my room. I'll probably do the same thing next month. Shaving your head again will help with the fuzz.
hahaha re you checking into your room!!!
I have talked to my hairdresser friend and she is going to give me a number 2 to allow the hair that did fall out to catch up with the hair that didnt fall out.
Cheers for the laugh as i needed it tonight.
Hey all,
This has been a very interesting read! I did the same thing as most of you, and took the hairloss head on. After my first chemo, my hair started the fall out slowly (i had long curly hair just below my shoulder blades), so I just went down to the local shopping centre and shaved it all off at one of those express hairdressers. I took my mum, which was a bad idea, because she started bauling! My theory was, I rather shave my head and deal with it before I got really sick from chemo. Because I thought that when I got sick, feeling terrible, AND have my hair falling out, would be way too much to deal with all at once. I am so glad I did it. I got used to it a lot quicker... and as you've probably all experienced, there are a lot of other physical changes... so I didn't want to deal with them all at once!
As to dealing with baldness, I couldn't touch my head for about 1 week after shaving it, it just grossed me out. But, I met my mothers hairdresser, and she said (I know this sounds strange), to gently exfoliate you head, because it's not used to not having any coverings, and oil your head. I laughed at the thought, but tried it. You can buy sensitive body oil, and it made my head feel terrific! Not itchy or anything anymore. You got to laugh at the thought of oiling you head ;)
An idea about the head covering ideas, I used to go to the op shops and buy LOADS of scarves. The are dirt cheap, very individual and most are silk or silk-like material, so they're nice and cool (from my experience) for summer. As someone suggested earlier, the Look Good Feel Better workshops, brilliant. I thought they were a great help. I only wore a wig twice, and that was to 21st parties which you needed to look dressed up so I didn't want to just go in a head scarf. But the scarves are great, long ones, short ones, plain, patterned.... Add a bit of colour can actually do wonders for your mood.
I once met a lady who'd been through chemo and she said that her hair was blonde originally, and after it grew back more red than blonde! How amazing is that? I got excited to think that maybe my hair colour would change completely, but it only came back lighter.
Just think, now you'll have tried more hair styles than most, so you'll know whether short or long suits 🙂 Hope everyone's going well! 🙂
Chels xo
Hi all,
I've read some of these posts - there were many things that upset me besides temporary "loss of hair/identity", being "sick", and others "reactions".
- time and financial loss it took me over year to recover. As I was on holidays and couldn't complete the trip. My husband is ok, but I felt bad for him too as it affected his plans too.
- stigma attached to cancer and in turn, my husband, family and friends. There was no family history and I also had family worrying about themselves or their children having cancer (not to mention my own concerns now, that I may pass on to my children), even though the risk is very low.
- young survivors "live longer" with scars and annual testing as reminders for life (while family and friends assume you are back to "normal").
- temporary or permanent loss of livelihood (depending on fertility, work/study career plans etc).
Hi all,
I've read some of these posts - there were many things that upset me besides temporary "loss of hair/identity", being "sick", and others "reactions".
- time and financial loss it took me over year to recover. As I was on holidays and couldn't complete the trip. My husband is ok, but I felt bad for him as it affected his plans too.
- stigma attached to cancer and in turn, my husband, family and friends. There was no family history and I also had family worrying about themselves or their children having cancer (not to mention my own concerns now, that I may pass on to my children), even though the risk is very low.
- young survivors "live longer" with scars and annual testing as reminders for life (while family and friends assume you are back to "normal").
- temporary or permanent loss of livelihood (depending on fertility, work/study career plans etc).
Hi ladies, have finally had a chance to join up and it's reassuring to find people who get it. Having been diagnosed with breast cancer at 28 with no family history earlier this year overseas and then having to come home to sort it out, it's been such an isolating experience. Most of the advice i have received which has been hugely valuable and appreciated has been from older women who have had to deal with this devastating illness with 5 for the price of 1 kind of treatments. As a young woman yet to have children and who was hoping to hold on to my fertility for say at least another 15 years it has just been one knock after the other. Have made it through a few surgeries and 6 rounds of chemo, just to keep the excitement going have radiation planned in a couple of weeks from now. Totally agree re: sense of humour, i've told a few people i'm over totally over the sigourney from aliens look.
With hairloss - i guess everyone copes differently, for me, i've dealt with my treatment quite privately with only close family and friends aware of what i'm going through. So, i went running off to find a wig and luckily, if you hadn't seen me for awhile it looks natural enough that few can tell. Also equipped myself with headscarves and a couple of hats. There are some amazing shops that cater for hairloss - i realise how tough women who had to battle this say 10 to 15 years must have had it.
After being in autopilot resilience mode for so many planned and unplanned happenings I have found it has really knocked me aorund. Close to my 6th chemo, i found myself more emotional and upset despite being a strong and optimistic person. I guess that will always be the case, good days and bad.
Anyway, enough ranting on my part, I hope each of you are having one of those good days! Lydia - I hope things are looking up as i can see this post was a little while ago.
