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.

Back To My Roots

The end of 2017 marked a significant change for me, no longer wearing a wig or having hair extensions, which had been a huge part of my life for the past two and a half years. Hair loss is daunting, heartbreaking and isolating, so I thought I would write a short post that might be useful for those who are currently experience hair loss due to cancer treatment, and are perhaps thinking about wearing a wig. I documented my personal experience with a couple of blog posts, Hair Envy and Letting My Hair Down.

Although I’m so pleased to have my own hair back, the thought I could loose it again with future treatment is never too far from my mind. I started to loose my hair towards the end of 2015 when I first starting taking Vemurafenib, and wore a wig on an almost daily basis for over two years. Due to a change in treatment, last summer my hair had finally grown enough for me to start wearing hair extensions, and I got rid of the wig all together. Sadly I didn’t manage to get rid of the wig before I turned 30, which was my original goal, but so far this year I’ve be sporting my own long, curly hair, which is the best gift I could have asked for.

I had my extensions removed late last year before starting a new job. Nowadays my hair is no longer affected by the cancer blasting drugs and has returned to its natural state. It looks the same as it did before it started thinning and falling out, which is awesome.

As a female loosing my hair was one of the worst  things that could have happened alongside my treatment, because it made me feel so ugly. When I looked in the mirror I saw someone who wasn’t really me anymore, but a cancer patient. Nothing screams I have cancer more than having no hair and eyebrows. When this happened It hit me just how serious my situation was. Now I have my own hair again I feel a little more confident, but it will take time to get used to again.

I’d read about how most patients loose their hair during treatment, and that when it does come back, it can come back a different colour, or a different texture.

When my hair loss first started I began to use gentle hair products and non-medicated shampoos, conditioners, and body washes, so without parabens. My scalp and skin became very sensitive so I steered clear of my usual go to products. When washing my hair I used gentle strokes and patting motions to clean my hair rather than scrubbing as I would have done previously. I used various products from Aveeno, Timotei (thanks poundland) and Sanex and also cut down the amount I washed my hair, having previously washed it every other day. I have since read that leaving a longer time between washes doesn’t prevent hair loss, but the less time I spent starring at clumps of hair in the bath plug hole the better. My scalp still feels fairly sensitive now I am taking an immunotherapy drug, so I still use the similar products on a daily basis.

I stopped using a hairdryer to dry my hair, instead using a towel, and made sure to rub it very gently. I found it was best to avoid too much heat from hairdryers or hair straighteners, so started going for a more natural look. This goes against everything my Nan said when I was younger, she’d always say leaving hair wet would mean I would catch a cold!

Once I began wearing a wig it became important for it to look as normal and natural as possible. I got two wigs on the NHS via Macmillan Cancer Support, althought I only ever ended up wearing one. It got to a point where it was my new normal, It was only when I took my wig off when I got home in the evening when it really hit me. I would go past a mirror and catch a glimpse of myself and suddenly it hit me that I was extreamly unwell, and that the drugs I have been taking to keep me alive and try to make me feel better were actually poisoning my body so much that I lost my hair, eyebrows and most of my body hair. I was filled with an overwhelming sadness and I still feel emotional thinking about it.

I knew people would notice when I started wearing a wig, as the style and colour were very different to my natural locks, so getting it cut and shaped by a professional hairdresser was really important, It made me feel more comfortable, as it looked more natural and felt less heavy on my head.

I used a hair brush from Denman specifically desgined for people with wigs or hair extensions, and washed the wig every few weeks in luke warm water using gentle baby shampoo, I was pretty shocked at how much dirt came out!

The best tip I was given was to use a clothes steamer to straighten my wig, it sounds bizarre, but it worked wonders on my wig after weeks of excessive brushing, which sometimes left the ends looking dry and brittle. I bought one from Amazon which helped to give my hair the glossy newly washed look.

I then had hair extensions for about six months before it had grown long enough for me to feel happy and confident going back to my roots. It was very expensive, but I justified the cost by thinking about how much money I’d saved from not going to the hairdressers for a cut and blow dry for over two years! I’d recommend it to anyone if they want to speed up the hair growing process.

I am due a PET CT scan in the next few weeks, which I’m already very anxious about. I’m hoping that pembrolizumab keeps me stable for the foreseeable future, as well as the obvious it would also mean I can continue to enjoy having my own hair again. I always used to want straight hair as a teenager, but nowadays I’m not fussy, I guess it’s one of those things you might not truly appreciate until it’s gone!