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.

Another Hospital Stay 

On Wednesday I’m due to go into hospital for another short stay, my first and hopefully only one of 2017. Just another day in the life of a stage 4 cancer patient! This time it’s not for Immunotherapy, but for an operation to remove the piece of metal that is protruding from my head and causing me pain. In my post Not Just In My Head I wrote about how my craniotomy scar has caused me a lot of pain over the years, and finally finding out why this was a few months ago. After a couple of consultations and different scans, it appears that the rogue piece of metal is a surgical staple or crainial fixer that was originally used to connect two pieces of bone in my skull back together after my brain tumour removal in 2010. Naturally there shouldn’t be anything poking out of my head! I could try to leave this as it is, however the area around the scar site swells up intermittently, so needs to be dealt with to stop causing me pain.

Last week I went to a pre-operative assessment appointment at the John Radcliffe Hospital in Oxford. During the visit I had various tests to make sure I am fit and well enough for surgery, including an ECG, MRSA swabs and blood tests. One of the nurses in the Nuerology outpatients clinic explained the whole procedure to me, and gave my a swag bag to take home with mouthwash, antiseptic cleanser and nasal ontiment in preparation for surgery. Being a bit of a pro and major operations I had used these before so wasn’t particularly phased by the procedures. The smell of the antiseptic cleanser reminds me of hospitals so I’m sure I will fit right in. Although the operation requires general anaesthetic it’s isn’t major surgery, such as having a tumour removed, it isn’t a life or death situation, but it’s certainly not common or without risks. I am also pretty sure it isn’t supposed to happen! In an odd way I’m looking forward to getting it over with so I can finally lean on both sides of my head again. 

Back in February I returned to the John Radcliffe hospital for perhaps only the second time since my major surgery at the end of 2010. During my consultation I saw the surgeon who performed my original operation, a man essentially credited for saving my life at the time. He explained the removing the fixer is a fairly straightforward procedure, which is always good to know, but that it wasn’t your every day occurrence. I’m not sure what has caused it, but these random things always seem to happen to me, so I’ve learnt not to be shocked. I always seem to be reminded that I am ‘not the norm’. The Surgeon asked how I had been since I last saw him, and remarked that I looked well, to which I responded ‘well, I am still alive so that a bonus’. A bonus indeed given the dire prognosis I had, expecting the surgery might buy me more time, a few months at best rather than years. 

Often my hospital stays are not planned, so at least this time I am able to pack and overnight bag. I’m really glad I will be seeing my old Surgeon for the operation, it makes me feel much calmer knowing that he knows my case and isn’t just going in there blind. More often that not I’ve found myself in an A&E hospital bed with no clean clothes or a phone charger, so planning ahead feels like a bonus. There is nothing worse than feeling unprepared and uninformed.

I keep reminding myself it’s just a short hospital stay and a few stitches so I am hoping I will feel fine by the weekend. Now I’m off to remove my nail varnish in preparation.