Hair loss

Massive hug back

cold capping here is not an option, distressed to no end, think home freezer kinds might help? get two, switch out? do you just wear 30 mins before and during or?

Hi, I empathise completely, the hair loss for me was really distressing.  However, I got myself a wig, had a fitting with some lovely ladies via the hospital and was truly happy with my new look.   I know it's not for everyone,, but for me it helped me retain a sense of “me” whereas I felt a scarf or just going bald would identify me as having cancer.   Best wishes 

That’s how I feel. Losing hair and going out in public with a headscarf will be telling all and sundry I have cancer. I can’t cope with that it my private business and I want to tell those I choose too not just letting everyone know. I know I just couldn’t cope with people looking at me as a cancer victim every time I left the house I’d feel too self conscious. I’ve decided when my hair does goes ( I haven’t stated chemo just yet) to wear a wig outside and wear a headscarf inside. This might change who knows! But I do dread the thought 

Agree the right approach & worked for me!  Very empowering - good luck

GSM how are you feeling ? Just wanted to check in and see how your doing. Big hug xx

This morning loads more came out, can see my scalp now. Feeling very self conscious, blocked the bath yesterday, so not going out without head covering. I feel it tells everybody that I have cancer.

oncologist appointment on Tuesday cancelled due to doctors strike.

now getting a really sore mouth!!!!!
cancer just keeps on giving.

big hug back

how are you???

Hi

I was in the mail on sunday it was a article on permanent hair loss after chemotherapy  it is quite rare but it was very upsetting for me as everyone told me ny hair would grow back, I have very little hair and don't go out with either a wig or hat 4 years after my treatment. 

Your not having a great time of it with all these side effects bless. I so feel your pain. I have e looked into side effects from a TNBC book I purchased the other day which was recommended to me vi. fB group called triple negative uk and Ireland.  The author is also

on the forum and is really knowledgable and helpful. She recommends a mouth wash such as Difflam and toothpaste such as Duraphat or biotin and biotin also does a mouth lubricant if you have a dry mouth.. Maybe Speak with your dentist possibly too as they can prescribe or recommend solutions. I’ve started to put together a chemo first aid kit in readiness for common side effects as I’m not naive enough to think I will bypass all these side effects so hoping to be prepared for them.

I’m so dreading my mastectomy Monday and worse the chemo. So sad about your hair as this is one of the worse side effects I think emotionally  and my heart breaks for you. Emotionally have you got good support to deal with all this?. I really wish my words can you make you feel better bit all I can say is that this won’t last forever and look how far you’ve already come throughout your treatment plan. Keep looking back as it often works when exercising my fitness instructor told me to count down 10-1 not 1-10 as it makes things easier so I guess it’s the same principle. Huge gentle hug for you xxx

Hi there. I have been preparing myself as best I could by following all of the fantastic contributors to this group. Reading everyone's stories and tales has mentally prepared me for each step.

From the point of diagnosis the prospect of loosing my hair was always an upsetting thought. The reality was I knew the medication to rid me of cancer would mean my body would take a beating and my hair being one of the worst to mentally deal with. I had just got my hair back to a length I loved after having had a bob which I hated from day one as it was too short for me. I've never had short hair in my life so to be loosing it felt very traumatic.

I am hoping my story of dealing with it may be of help or comfort to anyone about to go through it. 

I decided at the point I recieved my diagnosis that the fight was on, I was resolute and ready for my fight with breast cancer. So as far as my hair story goes I hope this is of help.

I had decided that scalp cooling was probably not for me, I used to suffer quite badly from chlostrophobia and have a huge dislike of being cold. It felt like an added pressure that may not work so feeling very brave I made the decision to not use a cold cap.

Once the prospect of loosing my hair was a factor I spoke with my lovely hairdresser of many years. She suggested a short cut to help with the change. So over a glass of wine she came to my house and we chose a short chic pixie cut. She suggested using clippers around my nape and ears I think as a little push to ready me. Surprisingly I was all for it, there where tears afterwards but I felt like it was the first hurdle cleared.

I had many compliments from people who where at the time unaware I had cancer. Really it did not take me long to adjust to the short hair. I won't say I loved it as I never really did but at the same time I did not mind it at all. 

After i had read so many stories of scalp pain when shedding, hair in food, leaving hair all round the house and people waking uo with it in thier mouths at night etc me and my husband decided it would be better if we shaved my head before that point. I knew EC was a hair killer so I wanted to take control.

I was also concerned about being ill after my chemo session and that shaving my head was adding to it in a stress sense. So we picked a date prior to chemo. So a Saturday night, we had our usual night in, ordered from our favourite resteraunt and over a glass of wine my husband shaved my head down to a number 2 buzz to get a bit more prepaperd before we did a final shave. Having had my hair short for what had felt like forever I was surprisingly calm and prepared. No tears. Our meal arrived and our Saturday night in felt very normal abielt me sporting a buzz!

The following day we had a planned Sunday lunch with family, the reality that I had a buzz cut as I got dressed completely overwhelmed me and the tears came. However they stopped, a little reassurance and a head scarf we went for lunch. Another hurdle cleared. So much so I even ended up ditching the scarf due to is being so hot in the end.

The following morning dawned and being in the house alone the view in the mirror brought a few tears once again. I decided enough was enough and it was time, so without much emotion or hesitation I shaved the rest down. We had planned to do this the following weekend.

Now I had read many stories of people shaving with razors and going to Turkish barbers because the pain of hair loss was too much to take. There is a risk of cuts and nicks and potential infection so we had decided that was not the way to go. My husband has had receding hair since his 20's and been shaving his head since his mid 30's. He uses a specific shaver for heads, they are amazing, never cut his head in nearly 15 years. Google them, I advise you buy one! It feels like it saved my sanity.

So with my hair clipped down to a stubble I jumped in the shower with the hubby's shaver and shaved it down. I did feel a few small tears trying to escape but in a strange way felt so happy. I had taken control and it was over. The relief and calm once I was out and dried in my favourite dressing gown was instant. It would have been nice to have had my husbands support but the anxiety of it coming was over. Every couple of days a minute in the shower and it is done. It really is not that bad. The worry had gone and a huge weight lifted i was hapoy about it even in a strange way. 

So a more than a week ahead of chemo the anxiety of hair was done. I explained to the nurses who have literally seen it all before and did not bat an eyelid. I went into my 1st cycle with only the worry of how unpleasant the chemo could make me feel. 

I suffered what felt like a 5 day hangover that got worse not better until it finally lifted. I was still shaving every few days during my showers, on day 11 I felt my scalp starting to tingle. It was only very mild and to aid my follicles coming away jumped in the shower before bed with my best friend the shaver, using a moisturing conditioner I used it to kind of massage the scalp. 

I went to bed as normal, it is worth noting i had been using a silk pillow since shaving my head. The following day the top of my head had gone very light, no shadow of where my hair had been. I was left with only back and sides. I continued my nightly shower and shave/massage for another 4 days until all the follicles had gone. I did not suffer another itch or any pain whatsoever. My head just looked lighter due to the follicle loss. No ordeal whatsoever.

I will say from the moment it was fully shaved I had been moisturing twice a day with Zerobase and also on an evening a quick rub in castor oil. 

My head has so far stayed perfect, no skin issues and is soft and no more sensitive than pre chemo. I am not sure if this is good luck or my marathon of a moisturising regime. I am hoping it was the later and that some other lovely ladies can benefit from my experience.

I know this may not be for everyone but from someone who dreaded it I can say if it is going to go make it on your terms. Like me set a date for each stage and take it head on. Have support around you, but I hope like me as soon as it is done that the relief is as satisfying and settling. From what is a traumatic experience I have now had a bald head for 5 weeks, and not had a hair worry for that time. 

Had I let it shed the worry of, when will it go, how fast, how much will it hurt all added on top of my chemo worries and physical unwell feeling feels like it would have been far too much to deal with in one go. It has let me focus on my family/work and also on my chemo and recovery from it without being an added burden for what I think was going to be inevitable.

So from one bald lady, if I can help you get through it as relatively easilly as I have then this post has been worthwhile. 

Good luck ladies, you can do it! Try not to overthink amd dwell. If you find the strength I think you will be repaid with calmness and serenity.

Love to you all x