19th July 2018

Why chemo hair loss is not just about wig or no wig

Keeping our identity despite chemo hair loss (c) KarinSieger.com

When I knew that chemo hair loss was going to happen to me, I decided to take matters into my own hands. It was one important way of feeling in charge, despite cancer.

Chemo hair loss is not shared by everyone who goes through cancer treatment or chemotherapy. But when it happens, it can affect us, regardless of our gender, age, whether we have gone through cancer before or not. Chemo hair loss is one very obvious way in which cancer can dent our sense of identity and self confidence. It also signals a change in us, which we cannot deny – to ourselves and others.

What can we do to cope well with the practical and emotional impact of chemo hair loss?

My first and favourite headscarf helped me keep a sense of identity and power, when everything else was crumbling. That and the earrings I bought after my first chemo sesssion. The scarf covered my bald head, gave it colour, some style and dignity.  Now it’s getting tatty; the colours are fading and it got mixed up with something red in the wash. But I love it and we will not part.

My scarf stands for a lot more then chemo hair loss.

Chemo hair loss is one of the more obvious signs associated with cancer and cancer treatment.  Anyone who has lost their hair through chemo, alopecia or for other reasons knows, it runs a lot deeper than headscarf or wig, bald or wooly hat or cold cap.

Why can chemo hair loss and hair loss in general be such a big deal and so traumatic?

While every cancer experience is as unique as the person with cancer, there are some general issues for us all. There are many possible side effects of cancer treatments, which is effectively poisoning of the body in an attempt to eradicate cancer cells. We are well aware of hair loss. Other side effects are less talked about, especially the so very real emotional impact, which can last a lot longer than treatment and can change lives forever. The emotional impact is also very real for family and friends.

You don’t need to have cancer to be affected by cancer.

Hair loss is personal and when it happens there is no (more) shying away from the reality of cancer and cancer treatment. Look at yourself in the mirror and it stares back at you. It changes the way you look, the way people look at you and possibly the way they treat you. Hair loss (not just ON TOP of our head) is difficult.

When I prepared for my cancer treatment, I decided I wanted to retain some active involvement in what has happening to me. Being giving the diagnosis and finding every single aspect of my life put into question and on hold, was a huge blow to my self-confidence. If I was not careful, then everything would end up depending on others: eg the doctors for my care and survival, the State my livelihood (practicing as a psychotherapist while undergoing cancer treatment was not an option).

No, I needed to keep a sense of active involvement, independence and exercise choices.

Being an active participant started with my hair.  I wanted it off  before the start of my treatment, before it would start to fall out.  I had read up on cooling caps, but I was not convinced it would work, and the stress of a frozen scalp and headaches before and during intravenous chemo did not sound appealing.

I remember the summer’s day, standing outside with my kitchen scissors, hacking away at my locks. I still have them somewhere in a bag. I could not get myself to throw them away. My hairdresser then gave me a number 1 hair cut. It was heart breaking yet exhilarating at the same time.

I decided against wearing a wig. It’s not me. I would have felt even more self-conscious and I knew I would not have the energy to worry about whether it sits right, or not. I opted for head scarves and hats, many colours, many styles. I needed variety. I wanted to colour coordinate, wanted to be able to express how I felt with colours. I wanted to retain a sense of individuality, of me. That also enabled me to retain an important sense of control and having a say in how I looked – hair or no hair.

Hair loss was to be the least of my problems, as other more severe treatment side effects started queuing up. But hair loss was different. Especially when I lost my eyebrows and eye lashes, I felt intensely disfigured and it was painful to look at myself in the mirror.

This was ‘me’, but I did not like ‘me’ – not looking like that.

I could conceal the scars of my operation and choose who I wanted to share them with. My face was a different matter. Wearing make up during chemo is not recommended. The skin is too sensitive; the body is already dealing with the chemo poison and adding more harmful substances to the mix (do you know what is in your lipstick?) was not an option for me.

Losing hair in other areas of my body gradually also changed my body image. I started to look like a child, not like a woman in her late 40s, who was also thrown into the menopause, with little to no transition.

Sitting in the chemo chair, treatment round after treatment round,  I got used to the same faces, patients who shared my same cycle, with wigs, scarves, bald heads, heads of full hair, heads with patchy hair. You exchange words, tips, or just a nod.

Over time you forget all that, and look out for other signs: How is the other person coping today? Do they look frail/er? What may have happened to the ones you no longer see? Will you see the nurse, who always makes you laugh and gives encouragement? Will the blood test results be good enough to have treatment today? Will my veins cope with another needle assault? Will I end up like the person pushed in lying on her hospital bed and crying, clearly distressed?

As you tick off the days and pop the anti-sickness tablets and steroids and God knows what else to cope with the side effects, you hope that it’s all worth it. You hope that it works. And even when it does, what are the chances of the cancer coming back, and it all starting again, only worse? Who knows. I don’t. I have learnt to stop going there. It distracts from now, from today.

I was lucky and given time. I was told the cancer was caught early, though it’s aggressive. My hair has grown back and the physical scars healed. Other side effects remain. I hold on to my scarf. I won’t take much for granted – anymore.

Losing my hair is only part of the story, part of the real loss of a life that was more care-free, than it will ever be again.  But I have also gained and grown in resilience, determination and patience.

Wig or no wig, the important piece is to feel you have a say and choices in how you deal with what is happening. It starts with the small things, like our hair, and will become an essential corner stone in our attitude of living with or beyond cancer.

If there is a next time, then the hair will be the least of my worries. For now I enjoy it. I am happy to have it, but it is not the same – like the one in the bag, somewhere.

Feature image courtesy of HansCramer

(Based on an article first written in January 2016 for Huffington Post: The BBC’s Victoria Derbyshire’s Cancer Hair Loss, published by Positively Positive)

Watch my video about chemo hair loss HERE

Have you read?

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Chemo brain explained – in plain English Read More

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