It is 12.13. Not my lucky number and a good excuse to not do the thing I am meant to be doing. Which is writing this. I am sitting in a health club, with my reduced egg mayo carton at 50p and some dry rice cakes. The well polished man next to me, is eating a very healthy salad and I’m nervous he can see over my shoulder and see what I’m writing. It is very ‘la de da’ in this place. But, I have promised myself to try to get to the gym every God. Damn. Day. Well. Ok, then every other day is probably more likely. Hey. More days than not. Since my stay at the Royal United Hospital Bath for Ankylosing Spondylitis ‘rehab’ investing in health seems even more imperative. I mean. Of course it was before. But. I’m also post 40 so ya know.
I attempted to see the experience of a two week hospital stay as an adventure. The sort of ‘adventure’ you start having more of as you get older. Like a weird mini holiday. Where you also get to meet other people you wouldn’t usually meet, and hear their stories. Diving into another world that one didn’t know existed. And hearing personal stories one wouldn’t usually hear. Unless of course that world belongs to you. Because of course, usually it feels rather rude to ask.
In our residential unit there were other people that struggled with chronic pain, yet their’s following on from cancer treatment. And whilst I cannot go into the experiences I was told due to obvious reasons, I can talk about this lady I met. Caroline!
Caroline Fernandez. Married twice, dog owner, osteosarcoma survivor, tattoo lover, occupational therapist and chronic pain struggler, oh and ADHDer. At 17 years old, she was fighting for her life to survive. Met a guy who also had cancer. Married him. He died. And now she’s married to another man (what an intro). Now at 40, yet looking 30, she has written a book. ‘No one talks about the after effects of chemo and the pain it can leave you with’ she angrily utters. We are in the hospital residence. The solace and camaraderie over pretty awful food at the end of the evening being one of the most fun group therapy situations of the day. It’s an adventure remember!
I eat another cheap yet tasty rice cake. I am in two places here. The health club reminiscing. Of the days running around festivals with out a care in the world. Yet now pondering how accessible they are for someone with stupid god damn health issues. Can I still get into the pit to take photographs? Is that a younger persons game. Not being dead yet, means I have still have dreams to pursue. And you know, despite what some younger people think. Your 40’s isn’t that old.
As Caroline is talking to the other women and stabbing her knitting needles into her wool, I am listening intently. I ponder if I should be grateful that I could do all those things, and now I can’t do what I could. I am still alive! Apparently people who practise gratitude are happier in life. We should be grateful for our struggles shouldn’t we!? The reevaluation of life and goals. Perhaps we all get certain tests. Different trauma. But I also call some bullshit on that kind of thinking. Because surely it’s never so simple. I once walked out of a meeting in Knightsbridge because a lady was crying that her ‘Daddy wouldn’t buy her a car’. I understand that trauma is very personal. And to be fair if I had a ‘daddy’ that was very rich I’d be pissed off he didn’t buy me a car too. But if I could swap some of mine would I? I guess that would be too cruel…
So over to Caroline what would you do? Would you take your journey that you have been given and swap it out? Would you go back and change everything if you could? Or… stick with the experience of what you know now.
Caroline: If I really take the time to think about it I don’t think I’d change anything about my life. Everything in my life has led up to this point, If I didn’t do those then I wouldn’t be here, obviously there’s lots of things I would love to be different but they are not things I can control, the surgeries I’ve had for example are not things I have done out of choice, they are things that have happened out of necessity, the pain I incur on a daily basis is obviously not what I’d choose but I am alive with two legs… albeit it a little bionic but would I change it? Probably not! I would love to wear a pair of stilettos, but again, I can’t because of my leg…… I’ve had an amazing journey to get to this point I really don’t think I’d change a thing….
How did you get diagnosed?
Caroline: Although the journey to that point took roughly three or four months, I got my diagnosis on my 17th birthday. It was a Thursday, and they told me I’d be starting treatment on Monday morning… How lucky am I. We were just about to go on holiday to Center Parks with a group of friends and my mum and dad, and I just got dumped with the amazing news that I had a bone tumour in my leg… so I did what any self-respecting seventeen year old would do… I told my consultant that I couldn’t start treatment on Monday as I’m going on holiday. But I’ll see him when I get back.
Honestly, the man looked shocked, he did not know what to say, other than, be safe, take it easy, come back in one piece, and I’ll see you in a week. I think in that one moment, my consultant knew what type of person I was and that I was gonna give him a run for his money!
Interesting perspective. What has led you to this point? I’m assuming the life lessons you’ve had on the way?
Caroline: I don’t know what has brought me to this point or this perspective, but I do feel like my upbringing had a massive part to play in that my parents provided me with a ‘can do’ attitude to take on the world at the drop of a hat, and I think I just applied that same attitude to my journey even though I don’t really believe I planned it, I think it just happened because it was instilled inside of me.
As far as lessons go, I’d love to say it’s all about gratitude, but for me, that’s not the case I have to work hard to feel gratitude about my life, and I don’t always achieve that everyday.
You spoke about how you feel there isn’t much media attention about those people that are left with after affects from chemotherapy. Can you explain more?
Caroline: The support post chemotherapy in the NHS did not exist. There were so many people who left chemotherapy after the cancer treatment. They were given the all-clear, and then It was time to start your newfound life… but in reality, there’s nothing. An empty pool of nothing, no one to check, that you’re OK? Or how you are managing to pick up the pieces or try and fit back into normal life. After this extremely traumatising event in life, you’re just expected to pick up where you left off and if you have been out of action for a year or so, your world has moved on, and there’s no way you can pick up where you left off. So you try and fit in to the new normal, but it’s not as easy as you might think.
Nowadays, there are some charities that can support patients post cancer, but it really is a postcode lottery.
Tell me about the wig you had..
Caroline: Oh my God, my wig was the most plastic shitty thing on my head. It was not my colour. I think mine was styled as ‘Rachel’ cut back from the 90s, it itched like a mother trucker, and did not make me feel beautiful, Lord knows I felt like rubbish all the time, so at least If I had a wig that made me feel a little bit better about the way I looked maybe it would have been an easier journey. But I was stuck with a good old-fashioned synthetic rubbish NHS wig, Now that’s not to say it was the NHS’s fault that the wig was rubbish. That was all they could afford to provide. In today’s world, there are some amazing wigs, and if my time was in a different era, maybe I would have purchased something a little more suitable for myself. To be fair, my beautiful copper wig only came out on two occasions. After that, I just didn’t bother and went bald.
You wrote a book.. is it still available to purchase?
Caroline: My book is still available to purchase, you can either get it on amazon or you can get it online at my website. I really didn’t write the book for other people, but I have allowed them to read it. I’ve written the book because It was a kind of therapy to get out what’s in my head so I could move forward with my life. Sometimes people ask me about my time having cancer and I don’t always want to talk about it as it can make some people uncomfortable, and you end up comforting others even though it was your trauma, so I tend to direct them to my book if they want to get a real perspective.
What has been your greatest life lesson from it all?
Caroline: My greatest life lesson….. That’s pretty hard because I don’t think the journey’s over. For me, I think it’s a life journey, not just that period of my life. As I may still have to have surgeries, I still incur pain, so i’m still learning. I suppose I have learnt… to take each day as it comes, try not to worry about yesterday, as you can’t change it and try not to think about tomorrow, as it hasn’t happened yet…
What advice would you give to people who are just being diagnosed. It sounds very scary.
Caroline: Ooooh advice… Don’t listen to anyone else about their journey because yours is going to be totally different… Just go with it… This is a good piece of advice because you might have things that you enjoy or maybe have phobias about needles or swallowing pills, but it’s really important to run the course or treatment might not work. Of course, having chemo is scary, you know that before you start, but it’s part of the treatment, you’re not gonna avoid it… unless you’re super lucky!
How do you feel about surviving? How did you feel when you thought you were going to die from it all?
Caroline: I have good days and bad days about surviving cancer. The majority of the days are good, but on the days when the pain is bad, I do put a really big question mark around that. I only really thought about dying once in my treatment. When one of the nurses told me, I gave her the fright of her life and said I was never going to do it again, like I chose it, lol. It did kinda shake me a bit, and I was thinking about what would happen if I didn’t live. But it’s not something I think about.
What do you like to do for fun
Caroline: Fun? I am very eclectic.I have so many interests, I think this is down to my ADHD. I love anything artistic, painting, sculpting, crafting… But I also love physical activities, like boxing and yoga, as pain allows, of course. I love music of many genres, one of my favourite things is to listen to music in the car and sing at the top of my voice like I’m on stage at the 02 arena. I absolutely love spending time with my husband Angel, he is my best friend, we do so many things together, every single day we laugh and that is the most important thing to me!
Tell us about your leg tattoo ?
Caroline: I got my first tattoo at the beginning of my tenth year of treatment, it’s the logo of the teenage cancer trust, and it’s on the back of my neck. My husband had the same tattoo on his wrist, on the same day as I had mine as a surprise. I absolutely loved seeing it there. At the end of the year I had another tattoo of the same thing on my wrist also.
Fast forward ten years and it was time to have another one, this time I got a tattoo of a warrior buddha, sat on a lotus flower ?, full of colour and joy to represent the fight in my journey, and then had another on the back of my calf of a Hamsa with an all seeing eye. Again full of colour and joy, for me these are a reminder of my fight and the journey, Because sometimes we need a reminder of how strong we really are.
Thank you so much for chatting to me, it’s been interesting as well as inspiring. Caroline’s book can be found at https://www.omgcancer.co.uk
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Final words Caroline?
“I suppose my final words would be…nothing in life is set in Stone. We don’t know what’s around the corner, so it’s really important to embrace every moment. Even the small ones, just in case something fantastic passes us by…”
Becki Bx
