I had to have chemo conditioning on the 18th June for stem cell harvest. Yesterday my hair started to fall out and today it’s looking very thin and still falling. I thought I might have got away with it until my transplant in Aug but it’s not to be…I have 2 wigs on standby and numerous beanies but it doesn’t prepare you for the shock. If I was in my 20’s and super slim going bald would be for me and pretty trendy, but at 58 and not quite so slim, hmmm…I’ve never worn a wig and they just feel odd and unnatural. I’ve joked with my boys and friends about having the Uncle Fester look but inside I’m struggling with it. I remember many years ago when my son was about 7, I was dressed up to go to a Christmas dance and he said I looked like a Fairy Princess, now I’m like the ugly sister…I feel I’m letting my boys and my husband down. I know compared to the struggles many people have to endure this is self indulgent but now I’m on show to all as a cancer patient and it’s hard. I’m putting on the brave face but a few tears have been shed this morning.
Oh @Lyn99 I’m sending hugs. I’ve just got my wig, my SCT conditioning chemo starts on my admittance on 02 August. I’m tiny - 4ft 10 - and petrified of looking like mr Magoo, or any other small bald unattractive cartoon, rather than Tinkerbell.
I’ve been on Azacitidine which whilst making my hair drop a little isn’t comparable to full on hair loss.
You are right - all the images for women rocking the bald look are so young and beautiful they would rock any hair or no hairstyle.
I think that loss of self confidence and self image is so tough. As women we are far more judged for our looks and it really matters to try and find a way to cope.
Maggie’s centres offer realistic makeup help, and if you contact them they can discuss, help.
But I’m here sharing your anxiety and your journey I’m in the same boat. I’m sure there are people who can help on here, but I can offer virtual hugs and empathy, so sending those right now xx
Hi @ChrisCKW thankyou so much for your kind reply. It makes such a difference knowing that I’m not the only one feeling this way. I’m the opposite to you at 5’11 so definately Fester lookalike at this end. I think it’s the transission to no hair that is difficult. It makes your head pretty soar too. I’m trying to keep up with eye makeup whilst I have lashes which helps a bit. I don’t know about you but wigs seem to be too thick and perfect which makes them less realistic and I can visualise it blowing off down the street! I really hope all goes ok for you on the 2nd it would be lovely to keep in touch as we’re on the same road. Hugs to you too and I guess we have to keep thinking that its temporary… xx
I’ve bought the special false lashes by eyelure that are for chemo/cancer patients. And I’m practicing drawing eyebrows!
I don’t think it’s vanity, I do think it’s a huge part for many of us as to how we want to be seen.
The Maggie’s wig is from Browns. A rep came to help me, and I really didn’t want a thick bushy wig. I’m pretty pleased with the one we chose, but I know I’m just organising as much as I can because, like you, I’m making light of it to others but cringing inside.
I’ve lost weight on the chemo, been in hospital poorly and lost more weight - so my skin and muscle tone has gone to pot too. It’s like I’m battling to save my body from the leukaemia and from falling apart.
I’ll be here - and message me anytime. The journey is tough so a friend who understands really helps
@ChrisCKW so sorry to hear that you have been so poorly and in hospital hope that you are starting to feel better. Sounds like the wig is a winner I just used the internet so mine are ok but nothing special. I think it might be a matter of confidence when wearing it. Done the eyebrow practice too but not very successfully! Like the idea of those special lashes, I’m going to look for them. Take Care and please contact me anytime too. Xx
Hi @Lyn99 and @ChrisCKW, I feel a bit of a fraud compared with you two and what you are going through but I had skin cancer on my head 5 yrs ago.
My hair thinned after my CLL diagnosis but I now also sport a round cavity on my head where I had an op to remove the cancer and then had a skin graft. I go for the Friar Tuck look myself.
As you see I joke about it, but I hate it, and I also call it my bird bath drinking stop over for migrating birds, but if I let myself think about it I would never leave the house. If it is sunny I have to sport a very fetching hat or bonnet, I joke again I note.
My husband made a remark about my thin hair years ago and I am therefore feel that he hates it, so I don’t feel as if he fancies me as much.
Symptoms have recently reappeared on my head and I have had biopsies etc which have led to further hair loss, Luckily this time it is scar tissue, but I await what the consultant says is the way forward later this month.
Wigs do feel very unnatural, I used have to wear one at work. If I had a wig it would definitely have more hair than I have now so it might feel and look weirdly heavy and thick. I would feel everyone knew it was a wig and what would they be thinking. I would probably never go out in the wind.
I send you both hugs, this is such an important post, thanks to both of you.
I await others thoughts.
And this empathy is why the forum can be such a positive thing - we all worry, but feel less of an outsider when other people share their anxieties and stories.
Hugs @erica xx
@ChrisCKW and @Lyn99 I was thinking about this post on my walk today and like you @ChrisCKW I am probably the same height whereas my hubby is 6ft so I am also aware of him always looking down on my head, which I inwardly cringe at.
@Erica @ChrisCKW @@Lulu Thankyou so much for your support I would have been so upset without it. I sat there this morning with a bag of my own hair which has decided to depart but I had a bath, did my makeup and pushed the remaining very sparse hair back into the thinnest pony tail ever, no fringe anymore but I went for a walk with my son and felt ok. I tried my wig and it’s better than I remembered but just too hot to wear today but at least it’s there. Head isn’t so painful today, I’m hoping that might convert to me keeping the sparse covering left but this could be wishful thinking!! Xx
OH @Lyn99, I cannot imagine what it can be like loosing and seeing your hair coming out so rapidly and ending up with a bag of it.
I am glad that your wig is better than you remembered.
Anyway this forum is here for us to be able to say how it really feels and looks to be us.
Has anyone else lost hair out there?
Hi Lynn. It is a difficult stage of treatment. I found it heartbreaking when my son lost his as he had done well until radiotherapy before transplant. I was strong and coping with it until that. The only positive note I want to add is that once transplant is done once it starts to grow it does so remarkably fast!!!..remember these days will come to pass. Sending you my love
Thanks @cyprusfan, you have added another dimension to this thread. That is watching a loved one, especially your child loose their hair. It must have been heartbreaking for you, your maternal instincts of just wanting to make him better, the powerlessness, the visual side and suddenly realising the seriousness of his situation. How old was your son and how did he feel?
Hi @Lyn99. Hoping your head is a little less painful today
Hi @Nichola75 thanks for thinking of me. Hope you are doing well. Yes it’s feeling much more normal today and I’ve worn my wig outside on a walk. It was comfy and I felt quite ok in it. My son said he forgot I was wearing a wig which I thought was the best compliment. I also got a date for my transplant this morning of the 9th August so lots to think about today Xx
Hi @ChrisCKW I found and read all your postings last night about your illness and the wonderful news that your sibling will be your donor. I am so pleased for you. I’ve got my date of the 9th August for my transplant so we should be in hospital at the same time. Myeloma patients don’t respond well to other donors, not sure why, so mine is my own stem cells and not a cure but it should give me many more years. I’m hoping enough for them to find some more treatments. I’ve heard CarT therapy could be something wonderful for many people in the future. After all you have been through you so deserve some good luck, Take Care Xx
I’m really glad it felt a lot more comfortable, and yes, that’s the best compliment. Wow, a date - that must make it all feel very real and your mind but be full of thoughts whirring around. Sending extra special wishes your way tonight. Keep posting and letting us know how you are doing X
@Lyn99 Am I allowed to ask where you will be? I’ll try to keep you updated on how I’m coping as I’ll be 7 days ahead of you. Or is 9/08 when they harvest your stem cells? If so do you then go straight into chemo or is there a small break between?
If you haven’t already discovered LookGoodFeelBetter, it’s a great site with video tutorials but, even better, it also has workshops on coping with hair loss, sore scalp etc; another on head coverings and wigs, and one on makeup and skin care. All free and I did my first zoom workshop today for makeup- lots of fun with about 18 ‘attendees’. Best of all you get sent a gift of skin creams and makeup.
I’ve ordered another wig online this time, so I’ll have 2 I can play with … I’ll let you know when it arrives x
So pleased to have met you on my journey xxxx
Oh @Lyn99, I am so pleased that your wig felt comfy and OK out on a walk.
As for your son saying he forgot you were wearing a wig, that has brought a tear to my eye, the biggest compliment in the world.
You also got a date for your transplant for 9 Aug.
Wow what a day.
Please keep us posted.
Hi @ChrisCKW @Nichola75 @Erica
Thankyou all for your very kind words and support. Chris, I live in Swindon in Wiltshire and will be at the Great Western Hospital. I think my Stc will be slightly different to yours as it’s my own stem cells. I had my pre chemo conditioning on the 18th and my stem cells were taken on Monday last week, no stay in hospital. The 9th is the day the transplant starts so hefty chemo for one day, a rest day and then stem cells infused the next. 4 weeks recovery but I hope to escape after 3?? I imagine yours might be more complicated?
If we feel well enough I hope we can chat during that time. I believe that my second week will be the most difficult as that’s when the bone marrow will be pretty much non existent, after that new stem cells should start to take. The LookGoodFeelBetter site sounds great I will definately take a look. Hope the internet wig is a success, you can always return if not. I had one arrive that was too small and it looked like a ferret balancing on the top of my head I think you are quite some distance from me, is it the Midlands? Take Care and keep yourself well, my goodness there’s a lot just round the corner, it’s a bit scary!!
Hi @Lyn99 thanks for your timetable, gosh, it must be scary.
Oh, I did laugh at the ferret on your head, we have to laugh otherwise we would cry.
As you say buying from the internet can sometimes give you the protection of being able to return the goods, although there are some exceptions so beware.
If you did get a good wig from a website it might be worth sharing the website details with us all @ChrisCKW, @cyprusfan
Take care we are always here for us all.