(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…
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:
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.