Picture a nappy.
Now picture that nappy on someone.
Who is the person wearing it? Is it a baby? An elderly person? Perhaps, if you’re especially imaginative, a sumo wrestler?
Whoever it is, I bet that person is not me…
You might think that this sounds a little freaky or that I have finally taken too much Oxycodone and cracked. Or you might see where I’m going with this. Well let me help you: since my operation, I have been incontinent. This may not be something you particularly feel you want to know about me and it is a shame if that makes you feel uncomfortable, but I will not apologise because I can (more or less) 100% guarantee however uncomfortable it makes you feel, it is worse for me. After all, I am the one sitting here typing away in a nappy that, judging by the dimensions of it, was designed for an incontinent Miss Trunchbull.
Phew, it feels good to get that out in the open.
Spilling the beans about this aspect of my life has been something that I have been working up to for a few weeks now. It is something that continues to stop me from going out, that at times has left me feeling isolated, crying at home terrified to go out into the outside world in the fear that I have an accident and humiliate myself. But now, although I am still struggling with this part of my life and I am in no way okay with it, I have come to the realisation that I am not embarrassed about it. And what is it that resulted in me having this amazing revelation? Well it is this terrific one-liner, courtesy of a lady who should have known better:
“Woman, do I look like I know brands of incontinence pads? No, I’m twenty bloody nine…”
Hahaha, right? The thing is, if this line is in the slightest bit funny to you it is because you are on the winning team and you can take the lack of poo in your pants for granted. You are one of the lucky ones who doesn’t need to, as you walk down the street, simultaneously scan the route for restrooms and search the faces of your fellow pedestrians for any twitch of a nose, any glance downwards, that could indicate that they have smelt or noticed something out of place. You are not someone who is regularly, as I constantly am, in a state of paranoia, waiting for any hint of a stomach rumble that could mean within the minute you are humiliated . You are not someone who, wherever you go, must carry a change of clothes in your bag in preparation for the not wholly unlikely event that you mess yourself. Because if you were, you would know how terrifying it can be to leave the house, and you would know that this situation in which you have found yourself requiring incontinence pads is, no matter your age, not in the least bit funny.
Personally, I found myself in this situation after my surgery at Stanmore. As I discussed in my earlier post, The Princess and The Pee, the reason I opted to have the surgery straight away, rather than waiting to see if radiotherapy or chemotherapy could shrink the tumour, was because I was fearful that the tumour would grow from the right side of my sacrum into the left. This would mean that the surgery required would involve removal of both my right and left sets of the group of nerves located around the sacrum, rather than only the right half of them. These nerves affect bowel and bladder control and removal of all these nerves would mean that I would, without doubt, lose them. Retaining control was of the utmost importance to me, so surgery was scheduled at the earliest date. However, keeping the left set did not guarantee I would keep bowel and bladder control and indeed upon waking up I came to the devastating conclusion that I had lost control.
I’ll be honest: it is completely and utterly a shit situation to find yourself in. I spent days crying in Stanmore, mourning for the life I felt I had lost; even now I see my life as split down the middle, divided by the eleven hours I spent anaesthetised. I never expected to find myself wearing nappies on a daily (or even weekly come to think of it) basis in order to give myself the security I need so that I may work up the courage to leave the apartment, but then again I didn’t see a lot of the things that have happened coming. It is easy for me to focus on how horrible things seem when I am sitting with my head in my hands, despairing at the deadly combination of constipating opioids and laxatives I must take, wondering how many steps I’ll make it this time before I have to dash back to the bathroom. But when I think this I try to remind myself that I got through an eleven hour surgery that (I am not even being dramatic here) made me feel as though I had been dragged through hell and back, and if I can do that then I can deal with a bit of poo.
I don’t want to make out here that I am kicking incontinence’s ass, because I am really not. I am not okay with my situation and I am finding it very difficult to accept that there is a big possibility that this is how I will continue to live my life. I can see that right now I am incontinent, but weirdly when I visualise my identity at the moment, incontinence does not feature. This is not because I have bravely refused to let it change me or anything like that, but because I, and I say this hesitantly, am massively hopeful things will improve. My surgeons have told me that they expect my nerves to recover and for me to regain control, but that this could take over a year, and I am beginning to cautiously believe them. At first, their predictions didn’t mean much to me; I found it easier to throw myself whole heartedly into my situation at the time, which happened to be me going to the toilet every 5 seconds. Dealing post-operatively with incontinence on top of everything else that had changed did not work out so well for me, and so I am choosing instead to take the road where I place my faith in those who know best. (A crazy notion, I know.)
So now I hold out hope that the nerves will repair themselves, just as my surgeons are optimistic that they will, and that I will regain control. Each time I feel a twinge or a stabbing pain up my bum I bitch about it but allow myself a little internal cartwheel of hope that a nerve is coming back to life..
My friend asked me a good question the other day, that I am still thinking about the answer to. She asked me, “Do you ever get used to pooing yourself?”
Right now, and I may have a different answer to this in a few weeks or months, I would say yes and no.
Yes, that each time I care a little bit less; I rationalise it and realise that if it happens in public people are likely to not even know, thanks to my industrial sized nappies. Added to that is the experience I have of pooing myself in the one and only Hollister, where no-one noticed; luckily for me it is so dark and stinks so much of their own aftershave in there, not even a sniffer dog would have noticed. Remembering this day reminds me that if the worst happens I am able to deal with it and it will not be the end of the world. There’s also another yes, thanks to the hundreds of hypothetical arguments I have run in my mind where I confront someone who is sniggering at me in the street and manage to get sassy with them despite the fact that I am standing in a pile of my own poo.
But there are also the no’s, for example it never becomes any more normal for me to poo myself. Plus poo in your pants is always gross – it smells like shit.
But there has been one realisation that has, for me, helped boost my confidence in going out: I don’t care what anyone else thinks. So thank you lady who wrote this because you made me write this post and helped me realise that I don’t give a number two what you’ve got to say.
This is probably not the funniest or most entertaining of posts, but I felt I really had to write about this because it may not be pleasant or glamorous, but this is one of the many faces of cancer. It is one that, unfortunately, nobody talks about, except during the first meet-up in Jacksonville of four young female adults from the UK undergoing proton therapy. There we didn’t stop talking about it, and for me it felt great. (If you were eating at the Cheesecake Factory in St John’s Town Centre on Saturday at 3pm I do apologise for the graphic turn the conversation took.)
Not that I read a lot of cancer books but in the few stories I have read, or films I have seen, there is only one book that talks about incontinence with cancer and even that was taken out for the film adaptation. Why is that? I don’t believe it’s because it’s not important, because I can tell you without a doubt it is. It’s because it’s not Hollywood – you can make a bald head beautiful (and I am in no way saying incontinence is more difficult than losing your hair) but there is no way you can dress up shitting your pants. But maybe we wouldn’t all be so ashamed of it if people knew there were others out there dealing with it and coping in their own ways. I’m not trying to start a movement, or maybe I am, but let’s just stop pretending that incontinence doesn’t happen. It does. It happened to me.
I will finish by saying that I am twenty bloody two. And I need incontinence pads.