The good, the bad and the ugly of my cold cap journey
Dear everyone, I am two and a half months past my last cycle of chemotherapy so I though I will share my experience with the cold calp. I had 4 cycles of TC (20/11/18 to 23/01/19). I chose to do a neoadjuvant treatment and start with chemotherapy to allow genetic testing to happen and give me some time to think about the best surgical approach. I used the Paxman cold calp. The extra small cap was too tight, so I wore inner small which moved a bit and outer small to try to keep it in place. I have lost about 50% of my hair (and I have heaps to start with) mostly in my crown, probably because the cap was a bit big for me. All the usual instructions to preserve hair were followed - washes once a week with coldish water and mild shampoo provided by my hospital (Sukin), no hairdryer, gentle brushing, silk pillowcase... They tell you that you are going to lose hair, but I don't think that I was mentally prepared to deal with all the shedding and the clamps of hair in the brush. At face value the treatment has been successful, I only had to wear head scarfs for a couple of months and by now not too many people will tell that I have lost hair. Was it an uncomfortable experience?, Yes, especially the first 20m. I learnt after the first cycle to take the Lorazepam that the hospital provided me to relax a bit earlier in the day at home (about an hour before treatment started) so by the time I got to hospital was almost out and barely felt a thing. Was it worthy?, Absolutely, as you can see in the photos I still have a decent amount of hair Would I do it again?, No, I wouldn't, especially if I required a longer chemo treatment. Chemotherapy and all the decisions that you need to take when fighting cancer is a stressful enough experience. Worrying on whether the caps are working and constantly cleaning up hairs adds another layer of stress that in hindsight I didn't need. Half way through the treatment I had a big bold spot at the top so I started wearing head scarfs and I grew to love them. Below is a photo collage of my journey, I hope that it is useful ladies!
An Oncologist with Breast Cancer - what she has learned from her own treatment ....
Along with the 'must read' Liz O'Riordan's blog (she is a UK breast surgeon who had 2 bouts of Breast Cancer) who writes candidly about her own diagnosis, surgery, chemo, tabs & treatment overall .... http://liz.oriordan.co.uk/ Here is another good read - this time by an Oncologist who also has breast cancer & had chemo in the lead up to her surgery. Like Liz, she found that what she had been telling her patients with treatment was not really 'what happens' in reality. https://www.theguardian.com/healthcare-network/2018/jun/07/oncologist-breast-cancer-chemotherapy
I am Famous...well kind of. Officially a Paxman Pioneer for scalp cooling
A number of months ago I posted a picture on the Paxman facebook page of my hair on the last day of chemo. They contacted me and asked if I would put my story on their story website as one of their "Paxman Pioneers". They give you a list of questions they like answered in there with the aim to raise awareness and stop the negative vibes put out their by some of the medical profession. It's a bit of a monologue (and they left out some punctuation) but if anyone would like to have a look, here is the link. https://paxmanscalpcooling.com/experiences/testimonials/kerry-muscat I'll be signing autographs later hahahhaha.
Liz O'Riordan - breast surgeon with BC Recommended to Read
I found this blog by an English breast surgeon who got BC herself to be incredibly useful & informative when I was first diagnosed. And then most especially the chemo guide when I found out I had to have it myself. She hasn't posted for a long time but a notification just popped into my inbox, she's writing again. So if you're into blogs, check it out. http://liz.oriordan.co.uk/MovingOn_files/this-is-who-I-am.html
Hair loss and regrowth
Hello all, just thought it might be interesting for people to see what happens in a year from hair falling out, to end of active treatment. I had 4 x AC, 12 x Taxol, then 25 x readiotherapy, Finishing in October 2017. The hairless photo was March 2016, the curly one was March 2017 (last week). I had straight hair with a very slight wave in it pre chemo. Good luck to you all, wherever you might be along your journey.
Kisquali
FYI - I did post in private group last night but no response so thought I'd try here as well. :-) Hi there all, Strange question for you all for a Sunday night - I'm on my 13th round of Kisqali, still on 3 tablets which is highest dose. I'm taking in combination with Letrozole and the bone strengthening injection every 2-3 months. I'm doing really well on this treatment combo and apart from ridiculously disgusting dry feet that are revolting and foot pain, nausea and tiredness, I can't complain too much!! Recent PET scan has shown that my bone mets are still present but not active according to oncologist which is amazing news apparently. My question is, I think my hair is thinning out and I have a "sore head". Only way to describe it is it feels as though my hair has been up in a "tight ponytail" and scalp is sensitive. Of course, I will check with oncology nurse tomorrow but thought others might have similar experience that they could share. Can't ask anyone at home to check for bald patches as single mum here and don't want to freak my kids out totally - I think that was the hardest part of my original cancer journey for them when I shaved my head as it was all falling out from chemo. Other question for musing this late on a sunday night is, are there others in this group on Kisqali or Ribociclib combo that have been told they are doing really well - I can't seem to shake the feeling that the PET scan got it wrong!! Thanks in advance
Post TNBC: cope and hope
Hello all, It has been a good solid 12 months since I posted on this forum. Have jumped on a few occasions but didnʻt quite feel that I was ready to contribute anything meaningful. An enormous warm hug to all the women with a TNBC diagnosis; I also am part of this camp. Diagnosed Aug 2020, had AC/Paclitaxel until Jan 2021 and the rest of that year was a medical health nightmare with a bilateral mastectomy (last minute alarm bell decision), radiotherapy, bilateral salpingo-oophorectomy and I tested positive to a rarer gene mutation. I have had rehab to give my body and mind the support it needed, rounds of extra physio and I raised my hand for any other wellness activity, on offer. I acknowledged that my walking ability had changed and let that change guide me, I also took up qigong daily in whatever recrafted way, I could. I was just going with the flow of my body and its energy in that moment. I ate healthy with or without appetite (that was a challenge), made fresh veg/fruit juices, drank litres of bottled water as my taste buds couldnʻt tolerate tap water amongst other things, rested and tried versions of sleep, journaled to keep my emotions in balance and my sanity, spoke to plants (that in itself sounds like I a batty escapee lol), reflected in the ʻreview mirrorʻ, couldnʻt stand the ʻpresent mirrorʻ and tried to find a good story, one of hope, change, acceptance, newness and inner strength in the ʻside mirrorsʻ that kept me going in smallish forward movements. I worked through it all on the days that my body/mind gave me the green light indicator. Between the red and amber, yes, I shed a waterfall of tears for the loss...of self as I knew me, of hair, skin - texture colour, free mobility, independence, friendships (I discarding many of these), family pain, body image, confidence and the list goes on in length. There were other lesser losses and symptoms that the body, mind, soul and spirit struggled with - inch by inch, moment by moment, thought by thought...hope was showing up. What we encounter once we have been handed membership of BC (and I was waving my fingers, stomping loudly and making noise - heck no! I donʻt want your bloody membership - well that fell on deaf ears) is traumatic. There is grief and loss, and it is scary ...we have no protective gear and significant pieces of our being were hurt (external and internal) and weeping - for self and others we love. The weeping tears help our wounds to heal, scars to form and fresh growth to reveal itself - what emerges in this chaos is a field of smiles - for life in every breath, every moment. I feel that the most precious take away learning is how much more awareness we have of self, others, our surroundings, life. Cope by giving self permission to be selfish, to gift self with gentleness and kindness, gratitude to your body, mind and spirit. Respect it with wellness (I walk a fair bit, and without fail do my daily integration of qigong and tai chi - truly marvelous. Iʻd love to do more swimming) sprinkle it with the ʻhope effectʻ - feed it dreams, ideas, smiles, creativity, celebration or whatever words resonate with you. My place of hope has been to gain enough courage and strength to gradually start to return to overseas travel in this new body, new me - and I am smiling as I write - I am going to Japan for a short trip to test me out :-) Fear of some degree, will walk alongside us, like a shadow - this was our membership subscription. There are many hurdles that present in day to day life - some feel like old friends now, others strikingly new. Grief and loss will hold a permanent spot and as the fresh growth expands around us - it will feel less dominant. I share this lovingly and with a sea of positive energy that ʻhope and wellnessʻ shine upon us all. Love and hugs xxHairy face
I am happy to have my eye lashes and eyebrows back. Happy to see hair on my head slowly growing back. Don't even mind it's salt and pepper in colour. But my face is looking like a hairy yetti. Could not be coping with that so I had a facial with an alkaline wash that melted it all away. Dmk products used. The facial cracks and I couldn't talk but was happy to be hair free. Thought about getting a facial defuzzer from chemist but I don't want to be shaving to promote more hair growth. How is everyone else managing this. Am on letrolze in case it's only this drug my hairy face applies to.
Hair shave! Keep smiling 😀
For anyone dreading when the time comes to losing your hair, I thought it would be good for us all that have been through this emotional moment to try & help others by putting our photos up; yes it’s emotional at the time & tears will flow but we all smile after & our photos prove it! It’s feels empowering! 👍🏻❤️❤️❤️❤️ I hope this helps others & keeps you positive & smiling 😀❤️😀❤️😀
