Seeing Scars

The clocks have gone back and right now I’m feeling grateful for winter coming our way. I don’t want it to be freezing cold all the time, but like many people I’ve started feeling the need to hibernate as the days get shorter and it gets dark so early. The colder days give me a good excuse to say no to things without being questioned. After work I want to get home as quickly as possible and hide under my duvet and escape from the world.

The winter months mean its easier to cover my many scars from surgery and cancer treatments with high necks and warm layers, which I am very grateful for. My scars tell a story, a huge narrative within my life, often they are scars that no one else sees or notices, but I know they exist and they get me down a lot. I have multiple scars all over my body, including a large one on my neck form my original melanoma site. Often, when I tie my hair up I worry other people will notice and stare at it, or ask questions about how I got it. My scars make a feel vulnerable and despite being 13 years old, the one on my neck is still prominent, and its the last thing I would want to talk about.

As human beings we are a curious bunch (aka nosy) and over the years there have been a few incidents where I have been asked about the scar of my neck by total strangers. Needless to say I’ve not been impressed by this! Another memory that sticks in my mind when I saw someone from school on a night out when I was back from university for the summer, they saw me and said; ‘what the f*** happened to your face?’ I’m not quite sure I knew how to react, but one of my friends quickly jumped in and told the person in question where to go! Firstly, It’s not my face, its my neck! Secondly, what a way to make someone feel terrible about themselves and shatter the little confidence they had left! Years have passed and I’ve not seen that person since, but the memory is still vivid. Clearly they weren’t taught tact and manners growing up – who does that?!

My hatred of my scars will always be there, during my holiday to Thailand in the summer I noticed some spots of vitiligo getting progressively worse; this is one of the side effects of taking Pembrolizumab, so I know I shouldn’t let it get me down, but it becomes another reason to dislike what I see, and it’s something else I cannot control, like all the other ugly marks on my body. The majority of my vitiligo is on my torso and my thighs and legs so it isn’t easily spotted by others, but I know its there and it certainly has an impact on my confidence and what I choose to wear.

I try to overlook my scars when I look into the mirror, but they’re not easily missed, I am able conceal some, but others are too noticeable or in too much of an awkward place to hide. In some ways I should be proud because they tell a story of everything I’ve been through to stay alive, they should be constant reminders of how strong I am, but the person I now see in the mirror is totally different version of me. In reality I hate my scars and the story they tell.

I’ve been thinking about getting a tattoo for some time, possibly over my portacath site. I got one inserted two years ago after numerous issues with my veins meant it was getting more and more challenging for nurses to successfully cannulate me for chemotherapy.  Despite being discreet and easier to manage than the other options, my portacatch protrudes slightly from my chest which I find ugly. When I have dark days I wish I could rip it out of my chest, like the scars and vitiligo it is another physical reminder of my diagnosis. I am not sure what tattoo I would have, it’s just be an excuse to cover up something I hate. Maybe I’ll become addicted and get them all over my body! I had my eyebrow tattoos done around two and a half years ago and it was one of the best decisions I made at the time.

All the scars remind me there is an unwell person staring back at me and I constantly have to dig deep for the strength to keep going. I don’t want all the scars to define me, that’s not who I am, but sometimes its hard to get past. It’s more than just the physical effects, but it’s the psychological ones too. Cancer has changed every single aspect of my life and the scars are a permanent reminder of my lack of control.

The various systemic treatments I’ve received over the past 4 years have shattered my confidence, made me loose my hair and eyebrows, made my skin itch and become sensitive, made me sick to my stomach, hardened my veins and kept me awake with fear and worry for hours and hours on end. They have fundamentally changed me as a person. My scars will always be a reminder of just that. I need to learn to embrace them, right now all I feel is sadness each time I catch my reflection in the mirror. All I see are my scars.

Facing The Chop

I’ve been lucky enough to have my own hair (minus a wig or extensions) for almost 9 months. I can’t get over how much it’s grown, it feels like the old me, circa 2008 is back again. Now I’m 10 years older but quite possibly not any wiser.

Since my regrowth I’ve wanted to let my hair grow and not touch it at all, and I’m faced with a huge anxiety about facing the chop. Why would I want to cut my hair when loosing it meant I had so little confidence? I spent countless nights crying myself to sleep and moaning to my friends about my lack of hair and subsequent ‘cancer patient’ hair styles that it seems like cutting it would feel like going backwards. I now have a full head of thick hair but the confidence is still hugely dented. It’s one of the many things around my illness which causes me anxiety.

When I initially started systemic treatment four years ago I was told to my relief I wasn’t going to loose my hair. After various changes in treatment I did end up loosing the majority of it, with what was left turning into a frizzy afro texture.

First I had to get used to the fact I was having treatment but didn’t look conventionally unwell, then I had to get used to obviously looking like a cancer patient. I finally did this and managed to embrace wearing a wig, after all I had straight, neat hair for once in my life so tried to see that as a bonus! I also lost all my eyebrow hair so got tattoos so I could feel ‘normal’. Then, with more hair changing I got extensions, which aren’t as easy to manage as one might think. Now I have to get used to the ‘old me’ making an appearance, only I’m not that person anymore, I’m a completely new one still undergoing treatment, however to a another person in the street I look 100% healthy. It looks much harder than it seems.

When my hair started to fall out I wasn’t mentally prepared, I didn’t expect it so I was really shocked. I thought it might just be a little bit, but when the bath plug hole was so blocked the water wouldn’t drain properly I knew I was in trouble. In one way I thought if I really believed my hair wouldn’t fall out then somehow it would all be ok. Given the original advice given I failed to buy a wig in advance in preparation.

During some of my worst times I used to dream about having long flowing hair again; and being able to tie it back. I’ll never take that for granted but now I have it I really don’t want to let go.

I now have more than enough hair to colour and cut into any style I want, but I can’t face it! My hair could do with a little refresh and a couple on inches off the bottom but it feels like too much too soon after my original trauma, it took so long to grow back after all.

At the moment, I feel ok that it’s a bit of a mess because it’s all my own hair, I’m never going to get a medal for best hair style, but I really don’t care. I know I’ll have to face getting it cut in the not too distant future, but I want to hold onto the growth; to this moment of success within my treatment journey, it’s a small win, but it’s a win all the same.

Has anyone else felt the same about hair cuts post chemo growth, or is it just me?! Perhaps in the future I’ll change drugs and it’ll fall out again, so I want it for as long as possible. I know it’s slightly illogically, completely irrational and silly of me, but having cancer does strange things sometimes!

Eyebrow Tattoos 

Last week I had my eyebrow tattoos topped up by Laura Kay. I decided to get my eyebrows tattooed last May after they completely fell out whilst I was taking Vemurafenib, an oral chemotherapy drug. Not only did my hair fall out and turn into an afro but my eyebrows disappeared too!

I’ve never really been a fan of tattoos and wouldn’t have considered any ordinary tattoo, but my facial baldness meant something had to be done.

Having my eyebrows done has made me feel so much more human and confident in my ‘new’ skin. Prior to the procedure I was drawing them in every day, which took me about 20 minutes and became more and more depressing as time went on. During my appointment I looked back at some photographs which were taken just before Laura performed the first procedure. It made me feel really sad to look back at these, I don’t think hair loss is anything a person can be truly prepared for. I’d recommend it to anyone going through something similar.

My eyebrows are semi-permanent so need to be topped up every 12 months or so to keep the colour and definition. Since changing drugs my own eyebrow hairs have also started growing back on top of the tattoos. They probably look better than they ever did before!

Laura did and wonderful job and my brows have now been restored to their former glory. My hair is also growing back thicker than before which is an amazing feeling. So far, the side effects for Pembrolizumab seem to be manageable. Of course, it helps that I know the drug is currently working.

The procedure was also filmed for a documentary I am participating in for the BBC about people living with cancer. More to follow in my next post…