Has anyone experienced permanent hair loss?

[marius1963]

Hi

I was diagnosed with triple positive breast cancer in 2010. I had 18 months of the big guns treatments and five years of anti hormone treatment. I finished the five years in March 2016.

Unfortunately I have been left with permanent hair loss after my treatment. I have seen a dermatologist and have had it confirmed . Less than 30% of the hair on my head had returned and the few hairs on my crown won't grow more than an inch. I know in the scheme of things it is a minor thing and I would not have refused any of the treatments I have hadeven if I'd known this would happen when I started.

I am lucky to be here able to write this when so many people lose their battles. I just find now I can't move on. Every time I look in the mirror I see 'chemo girl' and my confidence in facing the world had gone.

Has any one else experienced this? Or has anyone got any words of wisdom to help me get over this hump? I can't wear a wig because I'm still getting severe hot flushes and HRT is a no no, as are any type of herbal remedies which might help.

Thanks for reading this xx

[Lainey66]

Hi there Marius1963. I was totally bald for a year and like yourself could not wear a wig or hats. During the winter I wore thin cotton beanies or combined them with cotton snood like scarfs as I am a very warm individual. In all honesty I really didn't mind being bald at all. I found it cooling and had quite a feeling of freedom (I have never been very good at doing nice hairstyles and my hair was a curly mop. I found using makeup and clothing to enhance the bald look helped. I even considered shaving my head permanently, however I have now got short hair. I just seemed able to embrace the bald look, I had always admired Sinead O Connor when I was younger - perhaps that had something to do with it 😂. When my hair started growing back it was thin and whispy which I detested. I called it my 'half blown dandelion' look. So I shaved my head until the hair thickened. I guess in one sense it is mind over matter, and I really don't mean that glibly - if you can learn to embrace the look and make it your own in your own way, you will become far more contented. I find now that I get up in the morning and look in the mirror at my brutal 'bed head' and think "damn here I go again to wash my hair and get it looking in some small way tidy 🙄🙄" there are photos on my blog elainemurphy66.blogspot.com. It didn't bother me going around bald. I think others were more uncomfortable with it than I was. Maybe try some councelling at the cancer support centres to help you come to terms with it. I hope you find the comfort and a relaxed outlook and acceptance of your new looks. Unsing YouTube on how to fold light scarfs and how to 'rock' the bald look may help too. Sending you love and hugs. Lainey xxx

[Linkj in reply to Lainey66]

Elaine I have just read your blog, thank you, I had a modified radical mastectomy and lymph node clearance 25th March and have just had my 3rd chemo, 3 to go then radiotherapy. I am Grade 3 triple positive, invasive ducal BC, I thought I would be excited after chemo 3 but in fact physically and emotionally it has been challenging and it seems such a long road yet. Reading your honest, amusing and challenging story made me cry and laugh a little and opens up the hope of the end of treatment. This an isolating illness, I seem to spend all my strength trying to appear strong for my family and friends and to hear your ups and downs so echo my and probably many others challenges. I wish you all the best and hope you are feeling well, love the tattoos!! X

[Lainey66 in reply to Linkj]

I am so glad to hear that the blog has helped. I found it very therapeutic putting my feelings into written words and using the blog platform to air my fears and share my laughter. I found that it not only helped me but I felt I wasn't burdening my already worried family and friends. I know exactly how you feel re the road to recovery feeling so long, however it's a count down now rather than a count up, this time next year you will look back and honestly say "OMG ... Did I really go through all that!" The one thing that may stun you is the fact that everyone's life moves on while you fight this lonely fight, as no matter who you have around you, nobody can understand those lonely and sometimes frightening feelings that you have to endure. Yes their lives move on at what will feel like 'Fast Forward'. Whilst yours has stood still, almost like a time warp as you endure the cancer and treatment. I have had to take early retirement, it is only now that I am getting my head around that. I called into work and the changes that had taken place whilst I was away were unreal. I felt like a new member of staff, there were new staff members, children I taught had moved on, teaching methods had changed and there were new formats for everything. It felt too foreign and I felt like I no longer fitted in. I now paint a lot, raise money for cancer research and travel around Ireland. I am busier now than I was before cancer hit me. This time the 'busy' is on my terms, take in my interests and take up the time I devote to them and give me chance to rest as fatigue can still be an issue. I am learning to make the absolute most out of life, as none of us know just what is around the corner. Take time out for you, when this is over, live life to the full. In the meantime, good luck for the rest of your treatment and take care of you. Sending love. Elaine xxx

[marius1963]

Thanks for your thoughtful and kind reply. I really appreciate your understanding. I'm trying to see my baldie status as a battle wound. A battle I've won so far but many have sadly lost. I love your idea of 'rocking the bald look' and I'll use that as a mantra when I see chemo girl in the mirror.

It's so true what you say about being stuck in a time warp. For so long my world consisted of treatments, hospital, drugs and side effect, infections, etc, and then you're released back into the real world again. I have stopped teaching and gone back to accountancy on a part-time basis. Something I never dreamed I'd do. I've also learnt to pace myself and not go through life at full pelt like before.

I've been told I'm a very calming influence now 🌞. I guess I've learned what the important aspects of life are now.

I hope your art and your funding raising are going well.

Wishing you happiness and health

Sharon

[Lainey66 in reply to marius1963]

Thank you Sharon, I am sorry you have stopped teaching however as the oncologist stated - teaching creates stress and stress can feed cancers- therefore no more teaching. That came as a shock indeed. You are so right looking at it from the point of view that we are lucky to still be here. I was diagnosed in 2015. I met some wonderful women through chemo and radiotherapy, three were like me A triple neg. one passed away just before Christmas and the other two have since developed metastatic cancer, so yes we are so lucky and long may our luck continue. I have a special day today, a presentation at school for my retirement. I am both nervous and excited, I am worried about getting emotional or messing up my few words - silly concerns really when I look back over the last two years and all the 'concerns' I have overcome 🙄🙄😂. Keep on keeping on Sharon and here is to a more relaxed and healthy future for us all ❤️❤️