“Wow, I can’t wait to see what your hair will grow back like” someone said. “I bet you it will be thick and curly. My girlfriend’s cousin had think curls.”
“My uncle’s wife had dark curly hair after her chemo” someone else said.
“A woman that comes to our craft group had cancer, and her hair regrew in so, so thick it was like wool!” Yes, that was said by someone too.
As well as about three thousand other examples of post chemo hair growth observations, and about five thousand “Just wait and see, it will grow back soon I am sure of it!”
Six months after chemo, time would tell, by then most people have their hair back!
We rolled on through the loss of my hair in March 2013 from FEC -D chemotherapy, treated it like a celebration. A celebration to saying goodbye to cancer and moving on. I created the Shitty Tittie Chemo Cut Reveal Challenge. Eleven different hairstyles with Punk Chick to make up for my abysmal life hairdressing tally before getting cancer at thirty seven. I even made a video. See…
The hair loss was easy to experience because it wasn’t permanent. Seems now it is. And that reality is now dawning on me.
In the months after the year of treatment finished I threw myself into triathlon, running, cancer fundraising, and walks. I was part of a team that raised nearly $71,000 for Peter Mac (which I will add a blog about shortly). I also walked in The Cancer Council’s Relay for Life, and ran in the Mothers Day Classic. So it’s fair to say I’m totally pinked out for a while.
Fourteen months ago, I had long straight thick blonde hair, and pretty much for most of the thirty seven years prior to that.
Today, I don’t. Today, I’m sitting in a hair loss clinic in the big smoke.
There are some white Eames replica style chairs in this second floor medical office and I am invited to sit by a doctor who clearly has never had any issue with hair loss.
The white chair beside me has one lone, thick, dark and very long hair on the chair. Just one.
We discuss my history of hair and the details of my treatment for breast cancer. What was the extent of my shedding prior to breast cancer? Prior to chemo? Was my shower plug hole filled with hair or just some strands? Parents, yes, they had excellent follicular coverage on their heads. Yes, my Grandparents all had thick hair, although my maternal grandmother’s hair was thin at 79. Yes, my older brothers both now have receding hairlines and male patterned baldness. So does my husband. (Just thought I’d put that in. It really has no relevance!)
I am shown a picture that documents the degrees of shedding with varies sized hair clumps in each box of the table. Mmmmm tasty!
“How is the hair on other parts of your body?” asked the hairy doctor.
“Well, eyebrows haven’t returned, eyelashes haven’t grown in. Leg hair and arm hair is okay, a bit thinner than before. Pubic hair is thinner. Nose air, hasn’t returned. I have a A LOT more facial hair now. You know those ones that grow a few inches in twenty four hours? Yeah those. And of course, my head has developed male patterned baldness or androgenic alopecia, which according to Google is hair loss that occurs due to an underlying susceptibility of hair follicles to shrink due to the role of androgens.
The hairy doctor taps away on a wonky keyboard entering all of this data into my electronic file. This incessant clunking of the iMac keyboard perched precariously on a mouse pad, half on and half off goes on forever. Why not just stop and straighten it?
Then, out of nowhere, tears begin to gush from my eyes.
The hairy doctor stands up from the white replica Eames chair, comes around to the front of the desk and takes my hand. I am told “Be happy for your children, be happy for your children.”
“It’s only hair”
But it’s not ONLY hair!
After a year and a half, this is the thing that gets to me. It’s not the mastectomies, the ongoing pain, the weight gain, the menopausal symptoms, the loss of sexual function and intimacy, the ruptured tissue explander, the damaged lung, the supposedly benign lesions on my liver that will be watched. The seeming ability to age twenty years in one. It’s not even the cancer or the loss of my expectation of my healthy life and my healthy future.
This hair loss, my hair loss, ten months after finishing chemotherapy, is symbolic of all of these things. Collectively.
So I compose myself and look sideways over at the artwork on the crisp white walls. There I find no distraction. For the artwork is an rather accurate representation and of my shiny thin scalp and my receding hairline. Surely, all of the follicular themed artwork that adorns the walls of this practise is taking the mickey? Lithographic prints of landscapes, detailing hills and depicting deforestation. Barren. Sparse. Just like my post treatment head.
Halfway through the appointment I am asked to move and sit on the chair with the long solitary hair strand.
My head is photographed from different angles. At the end of the consult I am sent to the blood collection room. My results will be discussed in a month. These tests are done to ascertain if there is any underlying cause of hair loss, not related to chemotherapy or genetics.
But the wobbly keyboard. The follicular styled artwork. The single hair on the chair. The tears just keep flowing throughout the consult and I am offered a box of tissues to quell the year of tears and emotion.
The hairy doctor leaves the room and gets the Professor. I’m a little too difficult to manage. Minutes later, the face of hairy hope enters.
The Good Professor says that with some people, their hair never grows back post chemo, and they just don’t understand what the mechanisms of this are. It is really just luck of the draw.
“But there are many things we can do” he adds.
Medications can be taken long term, not to regrow the hair that has gone, but to slow the rate of shedding going forward. So let me get this straight! These medications won’t work at regrowing hair on my head, but as a side effect, they will add it to my face and body. Pleeeeaaaase no!
As for those expensive lotions and potions, useless too.
There are hair transplants. At this point, the horror of the catchphrase of the “Advanced Hair, Yeah Yeah! Ashley and Martin television add flickers in my head.
There are wigs, so post consult and blood collection, I am shown a small wig display of cheap synthetic wigs as a starting point.
The wig option seems to be the most enticing now, after I ridiculed the prospect of them last year at the LGFB workshop I went to and wrote about here.
When I finally leave the consult room I notice the long, solitary hair is no longer on the white Eames chair. It must be stuck to my backside.
On the train I ask myself the question, WTF am I spending lots of money seeing a hair specialist to be told it’s only hair? I thought a hair specialist would understand that it is not ONLY hair to their patients. I mull over the expensive treatment options. I am not sure how to proceed. Does it even matter anymore?
As my train leaves the city and stops at one of the last suburban stations, my face lights up when I see my friend boarding my carriage. I really, really needed to see him today. He boards the train and fights off other passengers who want the seat next to me. We embrace. We have a long chat as we travel to his home in the county. He makes me a delicious meal and we talk about hair, chairs and being grateful.
I am cancer free at the moment, so why don’t I just focus on that? I should be grateful.
Just. Be. Grateful.
It’s only hair?? Oh dear. Add that to the list of things NOT to say. Along with ‘be happy for your children’. WTF?? I’ve already sent you a few inappropriate upsides of your situation. I’ll leave it at that. Love your guts Lisey. xxx
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Yeah, not quite as deplorable as hearing from a medical professional… “You’ve jeopardised your treatment (by going somewhere else) and I hope your cancer doesn’t come back so you can return to work and pay some taxes!” That one is still the winner. By a long shot!
Love ya guts too buddy! x
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My eyes are gushing reading this. In the middle of the bloody food court at the mall. Fuck you, cancer, and the bald scalp you rode in on.
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I love food court tears! x
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Cried and cried reading this Lisa. You are so eloquent. And sometimes hair represents so much more than… just hair.
Love your writing and hoping you start to feel better. Thank Buddha for good friends.
Thanks for this life and reality check. XX
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xxx
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I don’t know what to say except to just send you a big hug. I often wonder how you’re going. That totally sucks about your hair. I’m having my expander exchange surgery on Saturday…don’t even want to think about implant ruptures! Who would have thought a hair clinic would say “it’s only hair!”.
I’m sorry x
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Hi Stemgirl. Mine’s an expander rupture and I think it happened very early on after it was inserted. It has always been lumpy, hard and painful and a few months after surgery my two year old accidentally kicked me in the chest. I’m still waiting on a public list for an exchange surgery sometime but am seeing my surgeon and plastic surgeon soon to see what the plan is. Not sure if the exchange will be sooner now. Surgery on a Saturday? Some weekend work! Good luck with it all. I hear it’s a lot easier than the previous surgeries we have had. x
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Wigs and hats
chairs with hairs
paintings and trains
chemo pains
Family and friends
hugs and snug
love you cuz
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Should have been an ‘s’ on hugs and snugs .
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Love it Steve! x
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Oh gosh that really is the pits having gone through the whole treatment.. Words cannot make it better but sending a big hug… ❤️❤️
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Thanks for the hug Helen x
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Oh Lis, I’m lost for words (which is a rare occurrence). You sure sound like you are going through hell. I would sooo love to be able to do something to help bring your hair back. Hang in there darling and keep writing, it’s beautiful. Thinking of you always. X
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xxx
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Oh, this really really sucks. I’m angry at the world for you. Keep breathing, and keep up that attitude of gratitude. It really does make a difference.
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Thankyou! x
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Oh Lisey, that sucks! All of it! You have earned your sorrow, anger, and grief many times over. I’m so glad you saw your friend and that he took good care of you. xoxoxo -Elizabeth
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Hi Elizabeth and thanks! I am a bit behind on blogging. Lots of reading to catch up on. I hope you are travelling well! x
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I’ve missed reading your posts. Thank you for posting today. Post cancer life is an adjustment dealing with the fallout from the drugs used to save us. Be on the alert of your teeth. I’ve had lots of dental issues post treatment. I call chemo/radiation the ‘gift’ that keeps on giving! My best to you and your journey of growing a hair or two. Xoxo Michele from Indiana
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Thankyou Michele and I hope you are travelling okay. I have much reading to catch up on. x
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Ahh, I am so angry for you. It’s not fair. I get the “just be grateful” sentiment, because I try to use it on myself a lot too, when I’m mad about the way my body looks, or the hot flashes, or not having eyebrows, or whatever it is that’s bugging me that day. And yah, I’m grateful, but still pretty pissed off about all of it, and still have to face it. So I can only imagine what you are going through. I’m really sorry this has happened to you, and I hope as time goes on, it gets easier to cope. You might have already seen this, but in case you haven’t… http://aheadofourtime.org/ Not sure if there are any good resources on there, but maybe it can at least connect you with some women experiencing the same issue. Sending big hugs from Canada.
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Ahhhh Steph, great to hear from you and thanks for that resource. It looks excellent. Thanks for the hugs from Canada too! x
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Hi Lisa. I’m sitting in Iceland, Reykjavik at the moment reading your blog and I am so sorry to hear about your hair. It’s shit, just shit that after everything you have been through you have to go through this also. You are an amazing, inspirational woman Lisa. Take time to think about what and how you want to proceed with the info you are given. No rush. Just keep enjoying life (that’s what I’m doing at the moment hence why I’m in Iceland!!!! Life’s too short). Love Belinda xx
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You know, Belinda, I always wanted someone to look at my blog from Iceland! So thanks! And enjoy the rest of your fabulous trip! x
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I am so sorry you are having to deal with this. It’s no fun I know, having also had to face up to this a few years ago after FEC-T treatment. It’s the Taxotere/ Docetaxel that does it…. Great drug for the cancer, but some of us, like your doctor said, suffer this strange side effect. Happy to talk on / off line if you want. Aheadofourtime is good x
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By the way, I wrote a little of my experience of this at http://travelswithmyson.wordpress.com/2014/02/09/weekly-photo-challenge-selfie/
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This is so unfair, not life threatening but life altering, the last thing you need, It’s a very visual reminder of all the other suff, so no it’s not just hair stupid hair doctor!
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It’s so true… the hair loss is worse than everything else you listed. People just don’t understand how devastating it is to lose your hair! I hope you’ll join our Taxotears group. You will find many understanding, kindred souls amongst us. We keep each other sane!
-Sherri Jo from Arkansas, USA
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Hi Lisey,
You may remember me from that LGFB workshop. I’m so sorry. I know how hair defines you, as I have had many different personas since initially losing mine thru chemo. Now I have a very short spiky do, and am still often not recognized or asked if I will (of course) grow it long again. No way, just glad it has grown back. I bought and wore a wig which I am happy to give to you, if you would like to try it.
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