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The Day My Bum Went Psycho

(with due and proper acknowledgement to Andy Griffiths from whom I stole the title).

The day the doctor said to me, ‘you have cancer,’ was a day I will not forget in a hurry.

Instead of reliving that moment, I will now insert the column I wrote in the Courier Mail that talked about my diagnosis and subsequent fallout. Please, read it if you wish…

http://www.news.com.au/couriermail/story/0,23739,26267299-5012471,00.html

This post, however, is about what came after. What came after the quite public admission of bowel cancer, two horrible operations (an ultra low anterior resection with reverse loop ileostomy followed by, five and a half weeks later, the reversal of the ileostomy), and what comes while on the long road to recovery.

This is about metamorphosing from being a cancer sufferer to cancer survivor.

I should be grateful; I should be leaping around for joy and smelling the roses and thanking whoever it is you thank for being given a second chance.
Believe me, I am grateful and I want to thank the surgeon, the gods etc. I have, I do and I would keep doing it if I could… and herein lies the problem. I can’t do much. But I can write and sort of think. Here’s what I have been thinking:

While you’re in the cancer stage – before, between operations and immediately after, everyone wants to know how you are, what the prognosis is, what you’ve been through, how you feel, look and what are your plans for the future. There’s also a hell of a lot of paperwork – but that’s another story.

Unfortunately, it’s during that time, when you’re reeling and trying to come to terms with everything, that you don’t want to talk about it. You don’t want to articulate how frail you feel psychologically; physically; how having a bag attached to you is difficult, even if it is temporary (I have such respect for those who live with a bag permanently). How talking about the most negative experience in your life to date is the last thing in the world you want to do. It’s like a bad dream, a nightmare from which you awoke but the memory and sensations linger… you want them gone, not to relive them with every phone call and email.

Yet, even though you feel desperately ill – in body and mind – you oblige and you talk. Sparingly, inadequately (because there sometimes aren’t any words) and deliberately upbeat… You see, though some people ask as if they want to know how you are, they don’t really. Well, they don’t want you to whinge. They don’t want to hear that your self-confidence has been shattered into a million pieces, that you’re afraid the old energetic self will never return; that your mind has gone to mush and the skills that you relied upon to get you to where you are in life have vanished; that you’ll never again feel like a sexual, sensual human being. That’s just too much.

And how would you respond anyway? I wouldn’t know what to say to someone baring his or her soul to me like that!

People want to hear that you’re doing well – after all, you survived. They ripped that cancer out of you and you don’t even have to have chemo! Lucky you – how good is that, hey! They expect you to express your gratitude over and over. So, you do. To them. You talk, you laugh, you hide your real tears and fears. Part of the reason for this is because you know that the day will come when you are ready to talk about all of this, from the perspective of distance, and you want them to come back. I know I didn’t want to be survivor who was also a Nigel No-Friends.

Only, many don’t come back – despite your efforts.

My chemist said to me the other day, as I was filling a script for very strong painkillers – narcotics, actually, which I take twice a day along with other meds to control the pain, ‘I’ll bet you don’t get much sympathy after all you’ve been through.’

I was quite taken aback.

‘Why’s that? I asked.

‘Because you look too good.’

And there’s the rub. I don’t look too bad at all. Please don’t think I am being conceited. I have lost weight and am quite gaunt, but I don’t look like I’ve suffered enough. I don’t look like either a cancer sufferer or survivor. How funny and, in a sense unfair, is that? You have to laugh.

Shit. I’ve had bowel cancer. Grade 3, highly aggressive and lost parts of my body that most of us don’t mention. I can’t return to academic work, I can’t go out except in short stints and I can’t eat before ‘enjoying’ those short stints. My bum has gone psycho, leaving me chained to the house and, in fact the smallest room in the house, often for hours on end as I endure gut-wrenching cramps and terrible pain as my body readjusts. As I have already said, I am going through psychological hell as well as physical… but I look good. LOL!

I guess I should be grateful for that.

I am, I suppose. No, I’m vain. I am glad.

But the thing I am most grateful for is the unending support and love of my kids, and my family and beautiful, amazing friends – including on Facebook. That is, those of you who came back! Also, the readers of my column who have maintained contact with me. Those of you who understand the façade – and not just the accidental physical one I am perpetrating!

Thank you so much for letting me ‘whinge’, be bleak and sad and for not expecting me to shout my survival from the highest hills.

When Channel Seven Sunrise asked me to appear a few weeks ago to talk about John Singleton’s confronting ad campaign about bowel cancer, I really wanted to do it – I believe in it. I think Singo’s done the right thing. But, I couldn’t. I wasn’t ready to face the world. I am now (in tiny doses) and I want to discuss the aftermath of surviving bowel cancer – not just the diagnosis and operation. And that’s partly because there are two people particularly who have allowed me to speak openly and frankly without cringing at my whinging: Stephen, my beautiful hubby whose love and support has been endless, and my darling friend, Sara Warneke whom many know as the fantasy (and non-fiction) writer, Sara Douglass. She also wrote so eloquently about her own experience with cancer in such a frank and moving way. I want to share (with Sara’s permission) this with you as well:

http://nonsuchkitchengardens.com/wordpress/?p=505

Thank you so much, Sara and Stephen, you have been such rocks – and Sara at a time when she needs one, such is her generosity, love and compassion.

OK. Enough said. My bum is still psycho, but it’s mine. I will learn to control it… eventually.

Comments: 22

22 Comments

  1. Karen, you are so beautiful. I love your honesty and your insight. I’m so sorry you’ve had to go through all this. But God you’ve made me think about and appreciate all I have. Bless you, darlin’. You’re one of life’s good people.

  2. You are amazing, seriously! You are in my prayers.

  3. Hi Cous,
    Great blog and great website! Glad to hear you’re on the mend and being able to talk about coming out the other side! Next thing is to come and see that you’re on the mend! Lots of love from Cyn and I. XXX

  4. Thank you so much for this insight into your courage, Karen. It takes a lot to bring a tear to my eyes, but you did. Rest well. And I look forward to seeing you around the traps one day. My best wishes. 🙂

  5. Karen, I’m still here! I don’t need to come back cos I never went away (I don’t know….maybe to you I did?) All my love

  6. You are one very amazing women Karen Brooks! You have a way of telling your story that makes the experience feel like it belongs to all of us. Thanks for sharing and being so openly honest. Gerry

  7. Hi Karen,
    You ARE so brave to share your story with us.
    I knew you were ill but I had no idea what your diagnosis was.
    I wish you all the strength and courage to fight this disease and hope to meet you one day, Karen Tyrrell xx

  8. Karen, I hardly know what to say. Your words have moved me so much and your story is so powerful that all replies feel so inadequate. I am sorry to hear you lost friends. If I can ever do anything for you in Sydney please let me know. I understand about the ‘looking good’ part. My father has been battling a very serious stomach cancer and looks so good that some people do not even realise. He too has been frustrated he looks so good at times because of peoples reactions. It sounds as if you have some wonderful love and support around you. May that be some form of light for you as you keep fighting.
    All respect and love to you as always. xx

  9. Thank you for writing such a candid blog. Your courage to share your true feelings about your darkest time is humbling. What you have been through and will continue to go through for many months ahead is unimaginable to many of us. Your friends and fans are overjoyed you survived cancer. We look forward to reading your future blogs, columns and books, and with time, seeing you out and about again.

  10. Karen, this is such a personal account. Thank you so much for being brave enough to share it with the world. And to post photos of yourself at your most vulnerable… I’m not sure I’d have your strength if I was in your situation.

  11. Wonderful post, Karen. You’re right – we often expect everything to be okay after the crisis that is diagnosis and surgery, but post-crisis can be such a difficult time – it’s a long, slow process to recovery and towards acceptance that your body – and life – will no longer be the same; feeling bleak and sad and having a whinge (hopefully without guilt) is part of that! I’m glad that you have wonderful family and friends around you. xx

  12. Karen, as usual you have written eloquently and honestly about a personal subject that so many have to endure before they become survivors. As usual, I look up to you, for your writing skills, your humanity, your dignity, your beauty, and just for being you. Sending love and light your way x

  13. I came across your blog via Twitter & what a surprise. I loved your post about Tony Abbott, then decided to read another. Oh, it’s cancer & illness. I wasn’t expecting this & am truly sorry you are going through all of this.
    Having had chronic physical illness for 20 years & needing to take morphine around the clock, BUT look young(ish) with rosy-cheeks, I have found that just about everyone over the years has problems believing I am unwell. Lazy, irresponsible, a ‘user,’ a failure, stupid, a princess….yes, all those & more. Ill? No you can’t be. You look so good! I don’t usually tell people unless I have to because I don’t want to undergo the ‘lay-persons consultation.’
    Hang with it Karen. You will find out who your friends are & very likely make some new ones. This is life. People run as fast as they can from anyone who reminds them of their mortality. It’s an impermanent world with everything changing all the time.
    An important point – don’t listen to those who try to tell you that you got cancer because there is something wrong with you or something you did – stinking thinking, lack of self worth, not eating garlic, unresolved childhood issues, blah, blah, blah. You get the message. Everyone knows how to cure you & they think they know better than your doctors. Ah, if it was so easy that major illness could be cured by __________ (insert here)
    The stats say 1 in 4 people get cancer. Despite this, there are ‘blame the victim’ attitudes out there. I have learnt that anger or worrying about this is pointless & now surround myself with those who genuinely care for me. I in turn do what I can to make others happy.
    Your blog & discussing this issue makes a positive difference. Thank you so much & I hope you have a speedy recovery.

  14. Thank you so much for your wonderful post. In turn, I wish you all the very best.
    ‘Lazy’… sheesh, don’t you love the descriptions people come up with for what they don’t understand. That’s a doozy.
    Karen 🙂

  15. After reading you site, Your site is very useful for me .I bookmarked your site!

  16. Oh Karen, thank you for sharing so eloquently and honestly. You are beautiful inside and out, regardless of which bits you are missing, psycho bum and all!

  17. i really enjoy your own posting kind, very remarkable.
    don’t quit as well as keep writing due to the fact that it just simply worth to follow it,
    looking forward to look into more and more of your current articles, enjoy your day 🙂

  18. Karen, it’s so hard to imagine what you went through, what you are going through. Tough, vulnerable, beautiful and appreciated. Fi.

  19. Hi Karen. I am writing this 2 years after your post/blog. I am doing research for myself at the present time. Whilst I dont have cancer I do have a bowel disease that I have just had surgery 4 months ago for. Sadly the surgery hasnt worked and I feel worse than before surgery. The disease is with me for life and I am trying to research ways to avoid having to have my bowel totally removed (only had partial removal now). I found your blog and I found it so totally amazing! To hear you say how people comment on how well you look is refreshing to hear. I now reply to people saying – “yes the operated on my arse not my face”. I hope that as it is now 2 years down the track that you are well on the road to recovery – I wish you all the best and I cannot thank you enough for sharing your thoughts/feelings etc with us. It has certainly helped me – and given me hope. What an inspiration you are…. All the best – Karen

  20. Hi Karen, Are you able to email my via my website? I can email you privately in response. I am so glad this blog helped you. Would love to chat 🙂

  21. Hello Karen,
    I only just recently heard of Sara’s death from a friend and fellow enthusiast of Sara’s writing. I can’t express how much I appreciate your web-entries explaining how you were with her at the end, and how much love surrounded her, but please know that my heart weeps for your loss and all of our collective loss at such a wonderful author and person.
    If you get a chance I would greatly appreciate knowing where she was buried so I can pay my respects. Please email me whenever you get the chance.
    Take care, Zerah

  22. Hi Zerah, Thank you for your lovely words. There are so many of us that still keenly feel Sara’s loss. I’m afraid she wasn’t buried. According to her wishes, she was cremated. Most of her ashes were spread over her garden – I have the rest. Take care, won’t you? Warmest wishes, Karen

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