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.

The Perks Of Pembrolizumab

Last week it was reported that two scientists behind groundbreaking Immunotherapy developments had won the annual Nobel Prize for Physiology or Medicine for their work on Immunotherapy.

This is big (and incredible) news within the cancer world! It got me thinking about all the positives which come alongside taking a newer, cleaner drug like Pembrolizumab. I’m continuing on treatment indefinitely which is hard to get my head around, but It’s safe to say I wouldn’t be alive without it! I just have to suck it up and keep on going.

Professor James Allison and Professor Tasuku Honjo discovered how to fight cancer using the body’s own immunise system, which eventually led to treatments for advance melanoma and has transformed the way it’s treated. My current Immunotherapy drug Pembrolizumab is now also being used to treat other cancers such as advanced lung cancer and Hodgkins Lymphoma. The drugs now offers hope to patients like me with previously untreatable cancer! Believe it or not the duos work began in the 1990s and is now starting to pay dividends!

You can read more about the award and the developments in the news section of the Cancer Research UK website, which also includes a few quotes from yours truly! Thanks CRUK!

I’m so happy that research in the area has been funded so far, but my case is one of many, some not as successful! Hopefully research will continue so scientists can fully understand why drugs work for some people and not others and how it can developed to become even more successful.

Ipilimumab (aka Yervoy), which I took a few years ago was one of the first drugs developed using the scientists discovery, with Pembrolizumab and Nivolumab following closely behind.

I started thinking about all the perks of taking this drug compared to some of my previous treatments. Going through endless cycles treatment is like crossing a battlefield every day. I need to keep thinking about the positive aspects to help keep a positive mindset, and it might help someone else too!

My hair and eyebrows have grown back since my treatment change, for me this is a huge success! I ask look well (partly thanks to the hair and eyebrows!) therefore not like your typical cancer patient; this does wonders for my mental health, but I know often people don’t always appreciate how unwell I am if they can’t see the evidence for themselves.

The side effects for me have been a lot less than on previous systemic treatments, including Vemurafenib which caused me many more problems such as frequent vomiting, skin rashes, bad stomach, headaches and joint pains to name a few. I will sometimes still experience these side effects, but to a much lesser degree than previously. My current main side effects are fatigue and vitiligo, and although these get me down frequently, (see my previous post Tired of Being Tired) I know I’ve come really far over the past two and a half years.

The infusion of the chemo itself is only 30 minutes, I know some people end up hooked up to machines for the best part of a working day receiving other types of chemotherapy. On a really really good day I might only be physically hooked up to a drip stand for a hour or so. Sure, that hour feels like an eternity, and there’s an awful lot of waiting around in between appointments etc, but it could be much worse. Today I had a really long day at the hospital, but I have to remind myself it’s all for the greater good!

Some weeks, when not seeing my consultant or one of my oncology team I only have to visit my hospital for the treatment in the afternoon, making the whole experience far less pain staking!

I’ve spent much less time as an inpatient on a hospital ward that with previous treatments. Three years ago it felt like I was constantly visiting my local A&E due to various side effects and having numerous blood transfusions, but so far so good with Pembrolizumab.

I hope that in the future this drug will be developed into a tablet, meaning a lot less visits to hospital for patients like me, considering how advanced chemotherapy treatments are becoming I would it’s not too much of a distant dream. Until then I just have to grit my teeth and keep going.

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!

Letting My Hair Down

It has been almost a year since I began taking iv drug Pembrolizumab to help keep my cancer at bay. When I first began systemic treatment back in 2014 my hair and eyebrows fell out and then my hair took on a new afro like texture. I documented this expereince last year in my blog posts Eyebrow Tattoos and Hair Envy.

Since I began Pembrolizumab exactly one year ago my hair has started to grow back slowly, this is because hair loss isn’t a side effect of this particular drug, but after having covered up for two years, next week marks my (hopefully) permanent departure from wig wearing. I am currently sporting an unruly short hair style somewhere between pixie crop and a graduated bob, but I decided to take the plunge and am due to have hair extensions fitted next week. The texture, colour and thickness have all come back,  I just need to add to the length. I have a short hairstyle once before after I had a crainitomy to remove a brain tumour in 2010, it did suit me, but I really miss my long hair. Wearing a wig for hours on end, particularly in the summer months can get really uncomfortable, so I am really excited about the freedom hair extensions will give me. I can’t wait to wake up and not have to think about my hair.

The heartache of loosing my hair is something I wasn’t prepared for, or even something I will get over anytime soon. Having to wear a wig has become part of my daily routine however, it also completely striped me of my confidence, despite being my new normal. Although growth has made it easier over time, I still wear a wig in public most of the time and would never consider going to work without covering my head. As a female loosing my hair was one of the worst  things that could have happened, because it made me feel the exact opposite, unfemale. When I looked in the mirror I saw someone who wasn’t really me anymore, but a cancer patient. It has made me stand out (not in a good way!) and feel ugly.

I know that getting hair extensions doesn’t mean I am suddenly going become self assured and confident about my appearance, there are no photographs of my bald head or short chemo affected hair in existence, which I think speaks volumes about my feelings on the matter. Most of my friends know I used to love taking photos when out and about, but this experience mean my outlook has changed. Paying a visit to the hairdressers marks another key step forward for me in dealing with my diagnosis, and perhaps over time I will be letting my hair down once again and not worry about what others think.

Sometimes it feels as though people think that because I am facing cancer that for some reason I no longer care about seemingly small or trivial things like what they think about the way I look. If anything it has made me more anxious, angry and upset.

I’m sure there are some women who would be comfortable and confident with having a bald head, however I am guessing there is a tiny minority who would be ok with hair loss from cancer treatment. I know I am not one of them. The past two years have been a mental and emotional journey, I tried to rock a shaved head and a variety of headscarfs but my locks were part of me, so losing them was a horrid experience. Yes, It is a small price to pay for life extending treatment, that goes without saying, but it doesn’t mean I should be happy about it!

Oddly, I am now feeling anxious about ditching the wig altogether. People may wrongly assume that treatment has come to an end and I am cancer free, but as it stands I am continuing having Immunotherapy every three weeks. I am now a stage 4 patient with hair, which is better than not having any, so onwards and upwards in a way.  I’m sure I will get used to it in a few weeks. I know there is every chance my hair might fall out again in the future, so if it does happen then hopefully I’ll feel more prepared.

I’m looking forward sporting a new shorter summer hair style and eventually feeling more like my old self. It’s a lot of money but hopefully it’ll be worth it. 

 

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…