Tricia: Hello Kat, and thank you so much for speaking with us about your memoir. You are such an amazing, courageous person for being so open about such a personal experience. Before we begin talking about the book, could you please tell my readers about yourself?
Kat: Goodness, that’s a small question with a potentially massive answer! I’m 54, I live on the border of Shropshire and North Wales with two of my sons, two dogs and nine cats … and I’m a bit batty.
I suffered a very abusive childhood and my mother put me in care when I was just 12 or 13 years old. I got abused there too, so I ran away a lot. Eventually, I was placed in a lock-up ‘Approved School’ which was almost impossible to run away from. Sadly, even there, I was abused by a celebrity visiting the school. Once I’d left the Approved School , I went into a hostel for working girls for a few months and then, at the tender age of 17, I was on my own in the big, wide world. Of course, I’d been programmed to fail. Very quickly I became pregnant, then lost my job and that was the final straw for my mother and caused her to disown me utterly. My whole life has been spent since then stumbling from one disaster to another and on to yet another. I have been married and divorced three times, not to mention two long-term relationships as well. I am completely unable to hold any kind of stable relationship together and in any event, I always manage to select the most dreadfully unsuitable partners. I finally settled down a bit some 18 years ago when I moved here to Shropshire, as a recently divorced single parent. Although life hasn’t been at all easy here, at least it has been settled. It’s been virtually impossible to make friends because the locals treat all outsiders with deep suspicion – hence my multitude of pets. I’ve always had lots of mental health problems to deal with, not least Anxiety and Panic Disorder, Chronic Depression, Flashbacks and Bad Dreams.
Tricia: Can you please tell us about A Life on the Toilet: Memoirs of a Bowel Cancer Survivor?
Kat: I had already written part of my biography on the advice of a psychologist and, to my great surprise, it was actually selling. When I found out I had cancer, it was almost a natural thing to write about it. Writing certainly helped me to order my thoughts somewhat; without the discipline of writing, I think I might well have ended up in a mental hospital. The book has a strange beginning. I tend to write in the way that I think, and to some extent, the way I talk as well. At the start, I muse about whether there was some kind of indicator that cancer might happen because any attack of nervousness throughout my life has always gone straight to my stomach resulting in nausea and dreadful diarrhea. I come to no specific conclusion though, other than to think that there has always been something a bit wrong in my ‘guts’ all my life.
Tricia: I'm so sorry about your illness, but I'm impressed you're able and willing to share with others so they might avoid what you've been through. Describe the time leading up to the discovery of your cancer. When did you first realize something was wrong?
Kat: Well, as I’ve already mentioned, I’ve suffered from digestive issues all my life. The doctor had always dismissed them as ‘anxiety’ or ‘nerves’ and in fact, had told me I had a condition called ‘Irritable Bowel Syndrome’. I had no reason to disbelieve the doctor, although I had become increasingly suspicious during the time I have lived here, that the doctors had made diagnosis without actually examining me at all. On one occasion ten years ago, when finally offered a hospital examination, I refused because by that time, my symptoms had disappeared! Of course, after a year or two the diarrhoea came back but I think, really, my first indicator that there was something not at all right was a sudden, inexplicable, bout of constipation. I’d had diarrhoea on and off for years and years but I had never experienced constipation, even though Irritable Bowel Syndrome is supposed to involve diarrhoea alternating with constipation. I wasn’t worried at first at all, just irritated because I still had the urge to run to the toilet. I did go to the doctor, but, because I was terminally embarrassed (and because of my abusive past) I refused to allow the doctor to perform a rectal exam. Had he done so then, the cancer would have been found immediately. As it turned out, I had a long period of constipation followed by my ‘usual’ uncontrollable diarrhoea for several weeks and then some rectal bleeding. The bleeding really frightened me but the doctors here were all very dismissive of it being anything serious; in fact they were all very reassuring. They told me not to worry and that it was probably nothing more than ‘piles’. Even so, they did refer me then to the hospital and I agreed to go ahead with the colonoscopy examination. I got into quite a state of anxiety about the colonoscopy, not because I feared what they might find but because I have battled with ‘emetophobia’ all my life (a phobia of vomiting) and I was scared the laxative may make me sick. Of course, what they found was not simply cancer but a huge tumour along with several pre-cancerous polyps and a condition called Diverticulitis (which explained away all the many years of diarrhoea).
Tricia: Can you tell us about your physical recovery and the issues you now face?
Kat: The physical recovery has been very difficult due to damage done during radiotherapy and the massive infection I got whilst still in hospital. I had been deeply concerned about the possibility of infection prior to the surgery to the point where I had asked to speak with the surgeon again. He reassured me that infection was only a very remote possibility, which is why I went ahead with the surgery. Unfortunately, not long after I awoke from the operation, the ileostomy bag came unstuck. I still had spinal anaesthesia in place and so did not feel anything and the nurses on the ward failed to notice anything amiss. When my visitors came that day, they noticed there was poo everywhere and fetched a nurse. The dressing used on the wound was not of a waterproof type and so, liquid poo had seeped through the dressing and into the wound. This resulted in the wound being opened up and my having to be discharged from hospital with a wound 20cm x 18cm x 4cm deep in my abdomen. There was not enough intact skin left for the ileostomy bag to adhere to, so leakages became commonplace as did infections. I spent the best part of three months flat on my back with nurses attending daily; I cannot say how many times my wound became filled with liquid poo or how many courses of antibiotics I had to take. None of this is at all ‘normal’. Recovery from surgery should have been around two weeks. Although the wound has now finally closed, it has left me with a very deep groove down the middle of my tummy. It actually greatly resembles a backside … on the front! Of course, the ever-present ileostomy bag is still hanging there on the front right too. I have been offered a place on the waiting list to have the ileostomy reversed but, in view of the dual diagnosis of Cancer and Diverticulitis, I have declined. I’m too scared to go under the knife again anyway.
Tricia: In terms of emotional healing, what was the most difficult challenge to overcome?
Kat: You know, that’s a very difficult question. I’m not sure that I have healed emotionally at all. The way I look now causes me a great deal of emotional and psychological pain. The groove down my abdomen with the thick, twisted, ropey scar tissue all through it is so unpleasant I cannot bear to look at it myself. I feel almost as if I’m in mourning of some kind. My lovely, slender, flat tummy has vanished and been replaced with something not only scarred and hideous but also fat – something else I have never before experienced. I’ve put on four stone since the operation because the nurses insisted I had to eat ever so much more to make the stoma output thicker. In actual fact, I feel a lot of resentment because, no matter how much I ate, the output remained completely liquid and still is, even now. I still experience a lot of fear and anxiety too. As I already mentioned, I’ve had mental health issues for many years. I wish I could say that they’ve lessened or gone away completely, but in fact, nowadays, the slightest little twinge of pain – other than the daily pain I always have – or the slightest symptom, my first worry is that the cancer has come back or has spread to somewhere else.
Tricia: What are your current challenges in terms to day-to-day living?
Kat: The worst thing for me is that the stoma itself has ‘dehissed’ all along the underside. This means that all the stitches came undone shortly after surgery. The stoma is therefore turned inwards and there is a gap of around 3mm between the stoma and my skin on the underside. If the ‘output’ or rather, the liquid poo, gets into that gap it is incredibly painful; it burns. It is not possible for me to change the stoma bag myself because I cannot see the lumen (the hole where the poo comes out) as it points down at my feet. If the lumen becomes blocked or occluded, all manner of problems can happen. Most people do not have this problem and can change their stoma bag themselves. I am fortunate in that one of my carers is also a qualified nurse and is able to change the bag for me. It has to be done every other day or more frequently if there are problems. There are still frequent problems due to the gap between the skin and the stoma, scar tissue preventing proper adhesion of the flange and glue and the permanent liquid nature of the output. Showering and bathing are also difficult for me as the bag becomes unstuck. This is something else that most people do not experience with a stoma. Mine won’t stick properly because of the thick, ropy scar tissue left by the massive infection post surgery. As soon as the flange or the glue sticking the bag on gets damp or wet, the bag falls off. Something as simple as not being able to take a bath or shower whenever you want to is something I find incredibly difficult to cope with. Having to be dependent upon carers is also very difficult for me. I was very independent before all this happened. On a positive note, prior to the surgery, I spent all my time having to remain at home and very close to a toilet because of the persistent diarrhoea caused by the Diverticulosis. At least now I can get about a bit as the diarrhoea collects in the stoma bag instead. I do worry a lot when I am out though, in case the bag falls off. I live in dread of disgracing myself in public.
Tricia: Colon and bowel cancer often goes undiscovered because people are squeamish about talking about ‘bathroom’ issues. How important do you think it is for society to get past our aversion to discussing natural body functions?
Kat: Well, I spent years and years going to my doctor complaining about constant, unremitting diarrhoea. I got used to describing, in great detail, what I was passing and how often, but I know most people wouldn’t find it easy at all. I think the medical profession themselves have a lot to answer for. If I’d been taken seriously and not simply dismissed as being ‘anxious’ (which I knew, some of the time, I most certainly wasn’t), then I’d have at least had a diagnosis of Diverticulitis many years ago. However, I find myself wondering, if I’d undergone the tests years ago and Diverticulitis had been found, would I then have been fobbed off by medical professionals when my symptoms changed? I have a strongest feeling I would have been and then the cancer would never have been found at all.
It IS difficult to get over that initial embarrassment to speak to a doctor, who may, after all, be someone you barely know, to tell them what is happening in the bowel or bladder regions, but I think it is important for people to set embarrassment aside and learn not to be coy about it. I think, if you try to look at it in the way that it is something we all, every one of us, have to do. At least, if you have to tell your doctor about going to the toilet, you know it is also something they have to do as well. Some people ‘go’ daily, others go several times a day and yet others find it perfectly normal not to go for two or three days at a time or even longer. The fact is, whatever is normal for you is normal. You should go to your doctor and report any change – unless it is obviously a bug – and most certainly report any bleeding.
Tricia: What was the most difficult aspect of writing this book?
Kat: Truthfully? Being able to sit down for long enough without having to run to the toilet! After surgery, it has been being able to sit down at all. I find it a weird paradox that, whilst I had a tumour the size of a grapefruit growing inside my backside I felt no pain or discomfort at all. Now that the tumour has been cut out, I cannot sit for longer than about ten minutes without experiencing dreadful pain in my rear!
Tricia: What was your goal in writing this book? What message are you trying to get across to those who read it?
Kat: Primarily, I think I felt I needed to leave some kind of record behind, not necessarily of just the medical side of things, but also the emotional side of it all, how I felt and how I behaved (which was often awful). Like everyone else undergoing their first ever surgery, I worried that I might not survive it; a lot of the time I also felt like I didn’t want to survive it. I wanted people to be able to read about me even if I was no longer around to tell everyone (or moan, which is what I do best).
Tricia: What other writing projects are you currently working on?
Kat: I’m just finishing a book about my cat, Gumbie, who was my very bestest friend in the whole world, and who died back in 2005. It is a mixture of poetry from Gumbie’s point of view and then a narrative of the same event from my point of view; it will include photographs too. When I’ve finished that, I shall return to my biography to write ‘Keri-Karin Part Two’.
One day, I intend to write fiction as I have a whole world inside my head which only needs committing to paper.
Tricia: I would love to visit with you again when you've completed your fiction books. Where can my readers go to find out more about your work, or to purchase a copy of your book?
Kat: I have self-published everything in paperback form through Amazon’s ‘Create Space’ program. All my books are available on Amazon in paperback, although even I admit that is an expensive way to buy them. They are also available on the Kindle (also via Amazon) at a much reduced price).
The links for this book are:
My other books are, as mentioned, biographies and are available on both Kindle and in paperback. They are titled ‘Keri’ and ‘Keri-Karin’.
Thank you for listening to me and showing an interest. I think it is really important for people to become more aware of bowel cancer as well as other bowel diseases. I would like to say to your readers that they should never let their doctor fob them off. They should insist on being taken seriously and listened to. Simply because you may be too young to be suffering from cancer statistically, doesn’t actually mean that it isn’t cancer. Likewise, any amount of diarrhoea or constipation, rectal bleeding or any other symptom, such as pain or discomfort should be thoroughly investigated and not simply put down as being anxiety or some kind of stupid hysteria.
Lastly, in my book, I have invented an anthropomorphic personification of Fear. His name is Psyche-Imp. I wish I could report that now the disease has gone, Psyche-Imp has gone as well, but he hasn’t. I believe he has been there all my life and a brief trip to cancer and back is certainly not enough to make him disappear. Externalising my fear by inventing Psyche-Imp has helped me deal with him though. If readers want to know more, they should read the book.
Tricia: Thank you again, Kat, for agreeing to appear on my site. And, for any readers out there who might be suffering from, or who knows of someone suffering from bowel cancer, I strongly encourage you to take a closer look at this book. It is not a medical journal, but is a valuable tool for someone who needs to know they're not alone in their recovery.