Three: ramblings about hair loss.

Ok, let’s talk about hair loss.

The past few days have been weird. As I mentioned in my last post, my hair had gradually started to fall from my scalp. At first it was just a few strands more than usual. Not much, but enough for me to notice. It reminded me of the beginning of autumn, when the leaves start to slowly shed and float to the ground. I love autumn. I love that the orange leaves cover the dull pavements, easing the transition from summer to winter with a warm layer of colour. But once the leaves start to fall, we all know what’s to come. Soon the trees will be bare.

On Friday morning I washed my hair and, wow, did the leaves shed. What felt like handfuls of hair slowly slipped down from my scalp onto my shoulders, chest, back. With trembling hands, I continued with my shower, chasing the falling hairs and capturing them before they made their way to the plug. Leaving me forever. When I was finished, I gathered all the hair and I stared at it for AGES. I feel SO weird saying this, but I stood there naked, sobbing into a ball of hair and I said, “thank you”. I spoke to my hair? I expressed my gratitude for giving me warmth, security and confidence. I felt guilty that my hair had to sacrifice itself to save me. I felt bad for my hair. That was new and weird and kind of freaked me out. So, I tried to pull myself together. I took one hell of a deep breath, threw the ball of hair in the bin and wrapped the hair that had stayed with me in a towel, hiding myself from the reality.

Matt came to check on me and found me bewildered in the bathroom, post the hair-thanking weirdness. I filled him in and the whole pulling myself together thing went straight out the window, rapidly replaced with a fast stream of sad tears. I told him I was going to leave the towel on indefinitely (lol). He patiently encouraged me to take the towel off and he stayed with me whilst I combed through my remaining hair. I had breaks between brushing the right side, the left side and the back, sobbing into his arms when I was faced with further handfuls of hair. The bathroom was full of my panic, corner to corner, ceiling to floor. But Matt held it together, stayed calm and encouraged me the whole way. We did it. And despite the handfuls of hair piling up in the bin, I still had what looked like a full head of hair. Breathe.

The day that followed was a bit of a whirlwind. I moved from absolutely sobbing, to almost hysterically laughing at the idea of being bald. From feeling nail bitingly anxious about my response to treatment, to feeling optimistic. From feeling completely avoidant of even thinking about wigs, to feeling a buzz of excitement to start wearing them (I’ll be naming my wigs. So far, I have one. I’ll introduce you to Willow soon. I think we’re actually going to be best pals). My cocktail of feelings was all I could think about and as each one surfaced it had a hold of me. Jumping back and forth between emotional states. All day.

But there was some consistency to my whirlwind of a day. As I worked through each emotional state, I was followed around by one unsettling question. Like a little gremlin was stalking my every move and shouting it at me. It wouldn’t stop asking me, in its irritatingly judgmental voice, why does hair matter?! Why the hell has this been the hardest part of my cancer journey so far? I tried to answer it to make it back the hell off. I defensively told it that it doesn’t matter. It‘s just hair. I am more than my hair. It’s showing me that chemo is doing its job. I said those things internally over and over. I said them externally over and over. To Matt, to my mum, to my siblings, to my friends. And whilst I believe those things to be completely true, I didn’t feel them. It felt like I believed them for other people, but not for me. And, for that reason, the gremlin of my mind didn’t buy it. So, it kept on asking. Relentlessly. Irritatingly. The little b*stard wouldn’t let it go.

I felt confused. Exhausted. I didn’t know what was happening. It felt like my mind had been put in the washing machine by accident and it had come out a bit dishevelled. I think it shrunk a bit and its capacity to make sense of things shrunk with it. I struggled to read, to watch TV, to browse the internet for things for our new house (this is very upsetting because I had a YOLO moment and decided I would spend money but I couldn’t make decisions and the YOLO has passed).

I spent the day in a daze. But something in me encouraged me do the one thing I know helps. I talked. And it did help. It helped me to start to make sense, to filter out the bullsh*t my dishevelled mind was feeding me and to determine where I was really at. Deep down, in my core, how I was really feeling.

I’m not fully there. But I have some more understanding of why hair loss has been so triggering for me. Firstly, for everyone, hair is only hair, but it can be a huge part of our identity and that’s why for a lot of people it’s hard to see it go. We all have our own histories, experiences, narratives about ourselves and beliefs about the world around us that make loss of identity difficult for our own unique reasons.

For me, cancer has already taken parts of my identity. I’m off sick and because of that I’m technically not a trainee clinical psychologist right now as my registration is temporarily suspended. Whilst that hurts, I know that’s how it has to be for now. But one thing I’ve really battled with is moving from the professional to the patient. I’ve worked in health care settings for years. I know what goes on behind the scenes, the teams, the processes, the admin. When I receive a letter in the post I know if it’s from the hospital because I’m so familiar with the yellow-tinted paper that is used for their letters. It feels weird and uncomfortable to be in receipt of one of those letters. It feels wrong. It makes me feel vulnerable, fragile and really unsettled. It makes me think that people might be feeling sorry for me. Ellie the poor cancer patient. Like that’s all I am now.

But so far, I’ve dealt with that by trying to show people that I am still me. And honestly, it’s been easy to do that because, until now, my cancer has been invisible. A pea sized lump in my boob. No one can see it. I can’t see it. My treatment side effects have been minimal and I still sound and act like me. I’m a cancer patient on paper, but if I want to, I can pretend it’s not there. And you can too. There have been some occasions where, for a minute or two, I have actually forgotten about it.

When my hair falls out, the cancer becomes more obvious. I move from being a cancer patient on paper to looking like a cancer patient. Losing my hair makes it real. There’s no denying it. I’m Ellie and I’m having treatment for cancer. It’s strange, I thought I had accepted my diagnosis, but I wonder if my brain told me that just to stop me from approaching the internal pain of facing my reality. If you tell yourself you’ve accepted something, you don’t have to go deeper. It is what it is. Surface level acceptance. Hidden from the deeper layer of complexity and unresolved pain. Hair loss has revealed all things hidden and thrown them in my face.

I’m working through the mess. Organising it where I can, accepting that it’s a process that will take some time. But its tiring and effortful and there have been times where I haven’t been very good company (sorry Matt). I’ve been in my own mind, exploring it back and forth, up and down, round and round. Trying to find ways to manage in a situation that feels so out of my control. Past experience tells me that when I get like this, I socially withdraw. Past experience also tells me that this doesn’t help. So, I’ve encouraged myself to speak to people and join my usual virtual meet ups. Doing that helped more than I imagined it would.

And at last, I think I’ve got somewhere with my thoughts. I’ve realised that conceptualising professionals and patients as opposite ends of a spectrum is not reasonable and is certainly not helpful. This experience has reminded me that when all is said and done, any professional, in any area of work, is first and foremost human. It is perfectly acceptable for anyone to be vulnerable. It is perfectly acceptable for anyone to be a professional and a patient. I know I’m off sick, but I am still Ellie the trainee clinical psychologist. It’s simply part of who I am. I’m also Ellie the cancer patient. That is also part of who I am right now. But I’m so many things. I’m Ellie the girlfriend, daughter, granddaughter, sister, auntie, cousin, niece, friend. Hair or no hair, I will always be those things.

I’ve also got somewhere with what I’m going to do. Sometimes practical solutions do really, really help. When my hair falls out enough to really notice, Matt’s shaving it. Right now, my hair is shedding all day and with it my parting is becoming wider. I haven’t cried about that. I feel ok about it. Because I know what I’m going to do. The day I wake up, look in the mirror and think, “Hun, it’s time it goes”, it will go. I will have made that choice and I will be empowered. I mean, I am going to be SO scared to do it. But I’m predicting it's going to look so bad beforehand that I will be looking forward to acquainting myself with Willow. I’m also ordering a friend for Willow, which I’m going to name Winnie, meaning I’ll get the choice of which one I wear. More choice, more empowerment. I might wear the wigs all the time. I might not. I might feel like I can rock the bald look. I might not. Either way, its ok because it's my choice.

In the meantime, I’m going to watch videos of people shaving their head to expose myself and allow the time to process what I’m about to do. My friend tagged me in a really great one recently, it was someone who genuinely just wanted to shave their head for no reason other than it being on their bucket list. The fact that there are people out there who strive for a bald head helps. I’ve also mentally planned numerous funny videos which require my bald head as a prop. I can have fun with it. That’s also my choice. I do have choice in this.

Like I mentioned at the beginning of this post, the past few days have been weird. But being so caught up in my own mind has taught me something valuable. Autumn encourages trees to let go of their leaves because they will no longer serve them through winter, and the outcome is beautiful. If I take a leaf out of autumn’s book (see what I did there?) and encourage myself to let go of things that no longer serve me, the outcome might be beautiful too. So, I am letting go of the fight against vulnerability. I am vulnerable but that doesn’t make me weak. I am letting go of the fight to protect my identity from cancer. I have cancer but I am still me. And with that, I can let go of the paralysing fear of losing my hair.

As I anticipated, the outcome is beautiful. Letting go has given me the freedom to hope. To have the mental space to focus on what I have to do to get better. I am hopeful that I will get through the gruelling winter ahead and my spring will arrive. And, just like how in spring the leaves sprout from the trees once again, fluffy baby hairs will sprout from my head and my hair will grow again.

Life is always changing, and we sometimes cling onto unhelpful thinking patterns or behaviours through fear of coping with the change. We fear doing things differently. We fear letting go of old ways of coping. Old ways of being. Sometimes this fear holds us back. I feared being vulnerable and I feared losing myself to cancer so much so that I got totally lost in that. Discovering the need to let go of that fear set me free. I think the fear will show itself again. But I will know what to do (side note: I use techniques that I learned from psychological models to help me with letting go. I won’t go into that now because I will get excited and go on forever, but if you’re interested look up Acceptance and Commitment Therapy). This experience has exposed me to the power of letting go of what doesn’t serve me, and that will be forever valuable to me through the various challenges I will face in life. That’s the beauty in the c-weed.