Friday, 26 November 2010

Guest Post Saturday

A little while ago I asked on Twitter if any of my fabulous beauty blogger buddies needed a place to rant or write something that wouldn't "fit" on their own blog

The lovely Laura who is @lil_fairy_doll on Twitter answered my call and sent me a great e-mail about a part of her life.

Have a read, leave her a comment. and if anyone else wants to have a rant or tell me a bit about themselves drop me a line.





Being 17 again, when you're only a few weeks from turning the big One Eight, the excitement of officially becoming an adult... most people would give their arm to relive those moments again. But not me, oh no, NO! Thank you, NO!




My whole life I've had many many medical issues, mainly involving my skin and my eyes.

Let me give you a quick background snapshot: I was born with a condition called Oculocutaneous Albinism (some mouthful I tell ya!). For those who don't have a clue what it is, basically I have no pigmentation in my hair nor skin and my eyes have a myriad of conditions resulting in me being legally blind. But that's another whole issue I won't bore you with.

Pigmentation in our skin is extremely important, especially because it acts as a barrier against outside agents and harmful Sun radiation. Because my skin lacks this, it is very sensitive to anything... seriously, just stare at me and I'll turn red with blue stripes, I swear!

Sun burns and irritations used to be almost a weekly affair until I learned how to take good care of my skin. Not to mention the fact that until a few months ago I lived my whole life in Italy, only a 20 minute drive from the sea, where everyone from April to October spends any available moment in the Sun roasting up.

Until a few years ago there was no extent knowledge of exactly what type of damage Sun would do to people with my condition, and where I lived we didn't have a good supply of the best Sun block available. Plus I used to spend my summers as a kid at the local creche: beach, swimming pool, days out... constantly re-applying sun block wasn't one of my main priorities.



All of this resulted in me having many moles all over my body, I really don't mind them as they offer a diversion from the general "whiteness" and they look interesting.

There was one though that for many years used to kind of bother me, and it still does: it's on the upper right side of my back and I tell you, it's a right pain when I'm getting dressed or undressed because it kinds of tickles, but in a bad way, every time it's touched.

So when I was 17 I decided to have it removed. I knew it wouldn't have been a big deal, the only bit I was kind of bothered about was going to hospital. I HATE hospitals with all my being, I seriously do!

So I went to my doctor to ask him to get the process going. He referred me to our local hospital where he said a doctor would check my mole with a special light and then decide how to remove the mole.

So I'm only a few weeks away from turning 18 and I went to have my epiluminescence done, hoping they'd decide to do something quick and non invasive with it. I had picked out the most adorable top for my birthday party, and the top of my back would have been showing and I didn't want a big bloody plaster on show!

The woman that welcomed me in the room immediately picked up my aversion to hospitals and started talking to me trying to make me relax, man was she good at it! she had me stripped down and on her couch. Straight away she noticed the billion moles scattered all over my body and asked if I'd ever had them checked. Checked? Checked for what? I said no and she insisted she draw a map of them on her big computer and checks every single one of them.

Still puzzled by the whole thing I of course agreed. It was some task I tell you!!! I've never managed to count them all but I'm pretty sure there's about 40 of them! Oh some day I should do a "join the dots" session with an eye liner....God knows what would come up!

So she mapped them all out, took special photos of all of them, sorted them in her computer and then spent about 15 minutes on on one mole on the inside of my right thigh.

I asked if the one on my back was ok to be removed and how they would do it? She said it looked totally fine and they would just asport it with a little surgery. But then she added "Before we do that though, I'd prefer removing this on your thigh first. I don't like the way it looks...". What? That one mole didn't bother me at all, the one on my back did. Why didn't she like the way it looked? For some reason I didn't ask what exactly was it that she didn't like about it, I think my subconscious did a great job in protecting me!

The following week I was back to have the mole removed in a small surgery. Everything was over in about half an hour, the surgeon was amazing, constantly talking to me, trying to relax me. The nurse that was there was a sort of family friend as well so it made the whole process easier and relaxed for me. The surgeon stitched me up, told me to get some stretchers, enjoy my Christmas break and try to go easy on the leg until the wound had healed, and they'd get back to me in a few days. Get back to me? Why? Oh maybe to give me a date to have the nuisance on my back removed! Yes, it must have been that.

The day after, even if I was in quite some pain, I was forced to go to school for the last day before Christmas break. My stretchers did get some attention but because I wasn't particularly close to anyone in my class, a simple "Oh just a minor surgery, nothing big" would dismiss any interest.



I was a good girl that Christmas and as the doctor told me I went easy on the leg....until New Year's. For about 10 years it's been a family tradition to spend the first week of January in the Alps at a family friends' holiday home. I love that! I love our family friends as if they were a family, and if you know me, you'll know I'm not particularly close to my own family for many reasons. I love the week in the Alps, the food, the wine, hiking, ice skating, the amazing scenaries, EVERYTHING!

And there was NO way I was gonna let the wound ruin my week, I went all out! I spent a good 80% of the day outdoors rolling in the snow, when it snows I instantly turn into a big kid! Sleighing, snow ball fighting, snow men building, ice skating! I did everything my eyes would allow me doing without any body's help, which doesn't include skiing or snow boarding unfortunately.

I enjoyed my week to the fullest and when I got back home I savoured every day leading up to my birthday. Turning 18 was going to give me my parents' permission to travel on my own, go see friends, go wherever my summer job money would let me! I had craved that for such a long time!



... And then 2 days after school had started again, the hospital called me. I answered the phone, it wasn't just a nurse or a secretary, it was the surgeon that had done my surgery, the oncology surgeon, the head of the oncology ward... He asked if I could skip the following day in school and go in to see him? Why was the head of the ward doing this? Shouldn't it have been a nurse job? And why did he sound so worried?! Why didn't I ask why he wanted to see me?!

That evening I spent a good five hours on the Internet looking for reasons why I would be called in after getting a mole removed. What I found traumatised me, it scared me so bad I was sick twice that night.



The morning after I went in with my mother, throughout the whole process she had to be with me, mainly because I was under age, not for any other reason really.

I sat in the corridor and waited for a good while, the nurse I knew came over to say hello and went to a desk to do some paper work. After a good half hour the door opened and the Surgeon came out following an old man. He held his hand, patted his shoulder and said "we did it, you're clear now". Clear? Huh?!

The doctor waved at me and signalled for me to get in, calling the nurse in at the same time. "But all these people were here before me?" I cried pointing to at least 5 people waiting. They were all middle aged to old people, no one said "Yeah, we were here first!". Not one. Instead they all stared at me and smiled in a way...like they knew what was going to happen...

As I walked into the surgery and sat at the Doctor's big desk I kept having flashes in my mind of what I'd read online the night before. I started feeling sick. The Doctor started to talk and I immediately cut in "please just get to it, no going around it and no sugar coating!".

"We sent your mole to be examined after I removed it. It's not good news..."

I said "It's ... it's....isn't it?!"

He stared at me for a few seconds, nodded and said "Yes, it's cancer".

I knew already, my research had told me that already the night before, I could feel it in me the whole night... but hearing him say the word made it REAL.

The following hour is a big blur and I only remember bits of what happened.

My stomach suddenly tightened so hard it felt like I'd been kicked. In a complete daze I stood up, ran out of the room, out the building, down the emergency exit stair case and sat down on the last step at the bottom.

I felt emotionally cold, I felt like I was meant to feel something, it felt like I was floating above my body and looking down on it, I felt like something was dragging me under ground, I felt so heavy.

Then all of a sudden I burst into tears and right that instant the nurse reached me. She held me hard in her arms and I cried so hard my whole face hurt. I cried for a good while, I didn't speak a word, neither did she. We walked back up the stairs, down the corridor, the people waiting staring knowingly at me. That's why nobody had protested at me going first, they KNEW what the doctor was going to tell me...because they all had been there too...



I walked back in the room and the doctor explained to me the cancer was a melanoma, it was at its third stage and how we were gonna treat it. He scheduled another surgery for a few days later.

When we stood up to leave my mother put her hand on my shoulder and said "It's ok". That will be the only sign of "affection" my mother will give me throughout the whole process.

The question I was now facing was: who and how do I tell this? I tentatively tried to ask for advice to my mother(she's a nurse) and she told me not to tell anyone in the family other than my father and my brother. What was I to know?! In hindsight I absolutely regret it and immensly resent my mother for it.

I tentatively told a couple of people I was close to and it didn't go too well. 17 year olds shouldn't have to deal with the big C, in ANY way! And of course they didn't know how to deal the whole thing and slowly drifted away from me...

I was on my own from then on. I felt horrible knowing I had this thing in me, I felt horrible I couldn't talk about it with anyone, it was a constant worry. My grades in school went down quite a bit.

My paarents never asked "how do you feel about it? What's going through your head?", nothing like that. My father kept verbally abusing me as usual. A few days later the 4 months school report came in and my father flipped at my decreasing marks; he shouted horrible things at me and whilst he did that he was gripping my wrist so hard it hurt for 3 days after. At the end of his screaming match he shouted "do you have any idea how your behaviour is making your mother feel?!"

Excuse me? My behaviour? My response was "Well I'm sorry if I'm not allowed to be slightly sad because I have cancer. And how she feels? how SHE feels? Have any of you asked ME how I feel?!".

After that I refused to talk to him for about a week. I had never felt so alone and worthless.

I had the surgery and the surgeon took out a bit chunk of my thigh to make sure he removed all the tissue the cancer had contaminated. After 9 years you can still see the indentation and the big scar where the stitches were.

I have to say the whole experience taught me I am stronger than I thought. My whole life I've endured verbal and sometimes even physical bullying which I think made me strong, but I never imagined I'd be able to count on myself only through such a horrible time and not crumble.

The following months I endured a long series of tests to make sure there weren't any other kinds of C going around me and that that one hadn't managed to get to a vessel and reek havoc. The whole time I was scared, scared they might find something else. I was petrified.

Six months later I had to undergo the tests again and I was clear. I was SO relieved. I felt so light. The week after I went on a major adventure with a friend. Using the savings from my summer job we went to Ireland for 2 weeks, the trip I'd dreamed of since I was a kid. For 2 weeks I felt so light and for the first time in months I felt free, not a care in the world!

For two years I had to do the tests all over again every 6 months, it then turned into what it's now, a yearly affair.



Only recently I looked into what exactly it was that I had. I found out there are different kinds of skin cancer and melanoma, the one I had, is the deadliest. According to the surgeon when mine was removed it was on stage 3: at this stage the melanoma is very likely to have spread to one of the lymph nodes finding a way to spread all over the body. Thankfully mine hadn't yet, if we hadn't caught it then, I probably wouldn't be here today because once it starts spreading unfortunately there is nothing to stop it. Only 40% of people that catch a melanoma on its third stage survive after 5 years. It's now been 9.



I felt EXTREMELY lucky that my body somehow sent me a signal to have my moles checked, I have always been very much in tune with my body and learn to understand what it's trying to tell me. I also felt extremely lucky that I didn't have to undergo chemo or radiotherapy. I would have been devastated to have lost my hair. If you know me you'll know my hair is the most precious thing to me, my hair defines me. I wouldn't be me without my hair.



If you feel like there's something wrong with you, in any way, shape or form, DO get checked! Better safe than sorry!!!!!



I'd like to thank the lovely Kellie for "hosting" me and filling my days with fab girliness and humour.



Lil

 
 
 
Anytime hun, it was an emotional read and a great thing to raise awareness about.
 
 
Kellie
 
 
You can read Lil_Fairy_doll 's blog at http://hazyfairyland.blogspot.com/
 
 
 
Big Fashionista x x
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9 comments

  1. Lil you are a true survivor! God this made me cry, my dad had had a melanoma on his nose that got removed successfully. Then he developed lung cancer in 2004, he fought it well but was diagnosed terminal in 2007 and died May 2007. My younger sister diagnosed in 2009 with agressive form of cervical cancer. Treatment was urgent hysterectomy at age 32 (luckily had two children already) looking forward to second year of all clear. Cancer is a twat (sorry for swearing). Would not wish cancer on anyone :(

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  2. That was a truly amazing read.

    I'm so impressed with how you have come through that when it was so clearly agonizingly isolating (aside from the the fact it's a deadly killer disease too).

    Thank you for sharing
    xx

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  3. Lil, thank you so much for sharing you story and raising awareness!

    "If you feel like there's something wrong with you, in any way, shape or form, DO get checked! Better safe than sorry!!!!!"

    To often we ignore the signals! My mum had Cancer - she ignored things she was concerned about (despite having been trained as a nurse) and we nearly lost her.

    All the best in your continued road to recovery x

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  4. Wow...thank you so much for sharing your amazing story Lil. An incredible & informative read, take care & all the best hun.

    Aysh xoxo

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  5. Your strength is amazing, and your account of the experience and how your parents didn't even know how to handle this has really made me cry, you must have felt so alone, thank you for sharing your story xx

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  6. A really powerful text you have written here...inspiring, moving and an eye opener. Thanks a lot for sharing this xxxx

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  7. Thank you so much Lil for posting this. It really is an important issue.

    I'm quite strict about checking my moles because I have a lot and I'm very fair-skinned, but what annoys me are the doctors (and there have been more than one) who have made me feel a bit like I'm wasting their time when I've asked them to check ones that I thought had changed. I've had one removed (and it took battling a huge fear of blades on flesh to do so) and wouldn't think twice about doing it again if I was concerned.

    Luckily, so far nothing has been found but this post will serve as a reminder to me that it is *never* a waste of time to get a second (or third, or fourth) opinion, regardless of the eye-rolling it may result in. Life is precious.

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  8. thank you everyone for your lovely comments!!!
    I was a bit worried about the "readibility" what with English not being my native language...

    @ Gemma: don't mind those doctors! Actually, give them a piece of your mind next time they try and make you feel bad about it, like "would you rather I didn't get it checked and die of skin cancer? wow such high ethics you have!"

    Thank you everyone for your kind words and support :-)
    And once again a big thank you to the amazing Kellie for hosting me, it's SO cosy in here :-)

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  9. Wow this ..and no lie is one of the best blog posts i have read. I had no idea about any of these things... moles etc. But this has actually mde me more aware. And i am so grateful that your well and alive.. thank God.

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