Thursday, 7 November 2013

Heavy heart

A couple of posts back, I said it was hard to post regularly and that I'd explain why another time. Well, I guess it's time to explain. If you follow my personal account on Twitter, then you'll already know some of my circumstance, but for those who only know me from this blog, or are here for the first time, then this post is to bring you up to speed.

I am recovering from breast cancer. I was diagnosed in May 2012, just before my 30th birthday, with a rare and aggressive form of the disease. The next year was spent in a whirlwind of hospital visits and treatment; chemotherapy, surgery, radiotherapy. The past months have been spent trying to recover from the physical and psychological effects of both the disease and the treatments I received. 

It was an utterly horrific ordeal, but I'm not really going to talk about that part: there are many blogs written by patients going through treatment, but I want to touch on what's happening now - the aftermath. For, in a lot of ways, what I am going through now is even worse. 

When you're diagnosed with cancer, you are suddenly (like it or not), surrounded by people. Doctors, nurses, radiologists, oncologists, medical staff with titles you've never heard of, family, partner, and friends if you're lucky (if you're unlucky, a lot of supposed friends will vanish off the face of the earth, but that's a whole other story). Not to mention the multitude of people who will come out of the woodwork and suddenly want to be your BFF. My circle of fellow cancer patient buddies like to call them 'cancer groupies' and sadly we've all experienced them to some degree. But the point is, everyone is immediately around you and you receive endless texts, emails, Facebook messages, all offering support. Then come the flowers, gifts, care packages. You battle through the most hideous physical assault on your body, literally fighting for your life and then you're suddenly told that you're OK. That they think they got it all. That yesterday you had a life-threatening illness and today you don't. The medical team you've seen pretty much every day for the past year are suddenly gone. 

It's amazing how quickly after that, all those who were so keen to support and promote you and your cause, drop off one by one, until you're left, alone, isolated and bereft, to deal with the magnitude of what the hell just happened to you. People have the mentality that "it's over now" and that "you can go back to normal again". Excuse my French, but are you fucking kidding me?

There is no normal, there is no going back. Cancer takes so much from you, physically, emotionally, psychologically, and leaves you a shell of your former self. I'm sure there are people who move on quickly and get some semblance of their former life back and, hey, good for them. But they are few and far between, judging by the women I've met through this experience, particularly the younger women. (Sidenote: the rapidly rising number of women under thirty being diagnosed with breast cancer is TERRIFYING)

I mean, think about it: you're in your twenties, having fun, excited about having adventures and all the things that life is going to bring you; planning your future. And then suddenly there's no guarantee that you'll even have a future. No guarantee that you'll see your next birthday, or make it to 35, let alone to retirement age. Now imagine living with that fear. Knowing that you've been through one of the worst nightmares you can imagine, at far too young an age, and yet it's still not over. And will never be over. 

It's easy to say "live every day as if it's your last", but try living with the reality of that threat. We all know that we're going to die one day, but it's not the same as being faced with the reality of it. Try to actually imagine how it feels to know that you might die and soon. To mentally start planning all the arrangements you'd have to make. To picture your funeral. To feel what it's like to imagine leaving the love of your life behind and all the other things you adore. Knowing that he's not even half way through life and would inevitably meet someone else and move on. The agonising struggle of wanting him to be happy, but the unbearable pain of picturing him in love with someone else. That your life will become a footnote, a subplot, that you'll go from leading lady to a bit-part in a bigger story. Can you even comprehend having that fear in your mind every second of every day? Of course you can't, and I hope you never, ever do. 

Alongside the crippling fear is the intense isolation. Nobody can possibly understand unless they've been through it themselves - and how many thirty year olds do you know who have had cancer? You don't want to feel like a burden to your partner and close family, so when asked how you are, your answer becomes, "I'm fine", when really you're anything but. You become more and more withdrawn because relating to the day-to-day woes of 'ordinary' people becomes impossible and infuriating. You can't go back to who you used to be, because you can't even remember what that felt like. Your body is forever changed from the gruelling treatments and being sliced and diced; you no longer move or operate the way you did. You feel as though you've been transplanted into a pensioner's body and are limited in what you can do. You look nothing like you used to. The side effects of treatment continue for months, years, sometimes permanently. Every twinge, every ache and pain sends terror coursing through your body with the question "is it cancer?" The guilt you feel at not being able to just "get on with it", as if you're wasting this second chance you've been given. Wanting so badly to be able to forget the word cancer and everything that goes with it, but knowing you can never unlearn this feeling. Knowing that you'll never be carefree again. 

All that well-meaning people can say is, "stay positive" and you want to punch them in the face.

This has all come to a bit of a head in recent months, partly because it's almost the one year anniversary of my surgery, which means I have mammograms coming up. So I'm suffering from what we patients call 'scanxiety'. Even if the mammograms were to show a recurrence, it wouldn't be the end of the world, as I know that a local recurrence can be dealt with by further surgery and treatment (however horrible that would be to go through again). But it's the rest of the body, all the bits you can't see and aren't routinely scanned, that cause the biggest fear any worry: what if the cancer metastasises to another organ/part of the body? What if it goes undetected until it's too late? When breast cancer spreads to another part of the body it's called secondary breast cancer and can no longer be cured. The 'what ifs' with cancer are big ones and are no joke. 

I lost a friend to breast cancer this week. It was a huge shock and I'm incredibly upset by it. There is a strong online community of young cancer patients (all types of cancer) and we are spread all over the world. We have private discussion groups and follow each other on Instagram, always trying to support each other and keep each other smiling. We are the only ones who can really know how it feels to be in this situation, so to lose one of our own is a devastating blow. To lose someone who has fought so hard and remained so positive throughout, who leaves behind a young daughter who now has to face life without her mum, is heartbreaking. Not to mention the reality it brings crashing back down on all of us; that this could happen to any one of us. 

So my heart is heavy, friends. Oh so heavy. 

Congratulations if you've read this far. I've only really scratched the surface and could write for hours and hours about this, but I'll leave it there for now. When I started this blog I knew I didn't want it to be a 'cancer blog' and I stand by that. It is inevitable that it will come up though, so I thought it prudent to set the scene I guess, rather than try to avoid mentioning it. I want this to become a place where I feel I can write how I feel, without fear of it alienating people, but I also want it to be a place where I can show that I am more than just a cancer patient. I want to share photos, places, stories, crafts, recipes, outifts, anything that I enjoy. I think I needed to say that as much for myself as anyone else, as it's easy to forget that I have a whole lot more to offer than tales of hair loss and chemo horrors. 

Thank you for reading. Now go find someone you love, tell them you do, and hold them damn tight.
xx



All images used are taken by and are the property of Tiny Grey Cat, unless otherwise credited. The use of any image from this blog without express permission is strictly prohibited. 

7 comments:

  1. Read it and understand and feel it. THANKS my sweet sweet friend! XO

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    1. Thank you, lovely lady! We gotsta stick together! xx

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  2. and yet so much hope speaks from that last sentence! you don't want this to be a cancer blog, because you ARE so much more my sweet friend! you will find pieces of the old you... but you'll discover some new colours as well! i'm sure of it! thank you for sharing this! i totally understand and feel what you mean! much love goes out to you! XX

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    1. Thank you so much, Ciel! I hope you're right. My boob sisters like you keep me going! Love you xx

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  3. I don't want to write anything that would come off as dumb or offensive. So I will simply say thank you for writing this.

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    1. Thank you for taking the time to read it :)

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  4. Agree with so much of this, I just finished chemo two weeks ago & I am really struggling. I haven't finished all my treatment yet but I feel a real pressure to put on a brave face and try and 'go back to normal' but I am just anxious about everything cause it's not normal, nothing is normal, it's shit, I look nothing like myself, it's like being stuck in an alien body atm.

    I really haven't met any other young cancer patients. I'm 25 & had an aggressive form of lymphoma in my chest. I was wondering how you found others on instagram? I think this is a great post though, needed to hear some of this so I don't feel like I'm losing my mind, so thanks! xx

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