Saturday, 26 May 2012

It's not just the body cancer changes.....

I've had bowel cancer now for just under 2 years....... well diagnosed with bowel cancer, how long it's actually been in my body subtly changing and mutating cells and organs I will never know.

Yes, my body has changed, surgery has taken away the whole of my colon and most of my rectum, not visual signs, but I know they've gone, my body doesn't digest food the same, for 19 months I had to really think before I ate something, about how it would affect me the next day, would it block the whole digestive tract at the point where my ileum goes through the stomach wall. The cut in my stomach to allow the ileum through was made too small, it's a difficult feat for the surgeon, judging the size, too small, the stoma can block, too big and it can herniate. So I had to learn to avoid certain foods, mushrooms, sweetcorn, nuts, celery, popcorn, raw pineapple and raisins. Of course I didn't always, I like my food too much, so then I had to chew these foods for ever to reduce them to a pulp in my mouth, of course that doesn't always happen, if you're talking, watching TV, just not thinking etc. A stoma blockage is extremely painful, comes on suddenly with no warning and lasts for hours, it's rather like childbirth and goes as suddenly as it started when the blockage is passed. I've had surgery to correct the problem now and food again is a pleasure.

I have as I mentioned, a stoma, which I've talked about in a previous blog. Another change, psychologically and visually. Who on earth would want their bum on their stomach? Who on earth would want to attach to their stomach bum, a bag to collect poo? It's a lot to get your head around, but do it you must, there is no ignoring the conveyor belt of poo that almost continuously emits from the stoma into the bag, you can't clench your 'new butt cheeks' there aren't any, you have no control whatsoever, you can't feel the stoma working, a stoma has no feeling at all, so another thing to get your head around, something with no feeling is easily damaged with fingernails, dogs jumping up, small children suddenly deciding to launch themselves on your lap. Your stoma has a HUGE blood supply, so bleeds easily, it's very strange to have something bleeding copiously but is never sore, you never know you've damaged it until you see the blood! Of course although the stoma and bag are invisible to the general public, they are there, on your stomach a small bulge, when the bag is empty, that gradually enlarges over about 4 hours until it needs emptying. So tight clothes are out, no flaunting yourself around town in the tightest of tight (if you are ever able to get into the tightest of tight in the first place), no laying on the beach in an itsy, bitsy, teeny, weeny, yellow polka dot bikini! You have to be imaginative, creative or just dead lazy like me and spend most of the time in jeans/trousers and long tops.

Scars, the visible signs of cancer and yes, I have many. Thank goodness I've never been vain, for some people they are a huge problem to get over mentally. A lot of colo-rectal surgery is still performed by open surgery, the one where you get a nice 9-10 inch zip like scar right down the middle of your stomach, skirting around your belly button and ending just above your pubic bone.
Not a good look for the young adult in their 20's....... yes, bowel cancer has no age limit, I have too many friends in their 20's and 30's with bowel cancer..... who are still searching for that special person, but now they have to be extra special, they have to look past the zip scar, the stoma and the bag full of poo. Keyhole surgery is more commonly used when it can be for bowel cancer, I was lucky enough for my surgery to be performed this way. A cut is made either above or below the centre of your belly button for the camera to go through, then smaller cuts, usually about 3 or 4 are made radiating out about 4-6 inches away from the belly button, for the tools of the trade to be inserted to carry out the surgery. I also had a 4 inch cut made along my bikini line to remove the diseased organs and tissue. The op I had a few weeks ago to repair my stoma, was also carried out by key hole surgery, so new holes had to be made so my stomach now is like a clock face of scars!

Chemotherapy, another minefield of visible signs of cancer. Most people know about hair loss, a woman's pride and glory may start to fall out in clumps as she brushes it in the morning, when she takes a hat off, when she just goes about her everyday tasks, the pillow is covered in it on awakening in the morning; men who are the butt of baldness jokes suddenly find that they are just that.... BALD. It's not just the hair on your head, you lose your eyebrows, your lashes, your beard and moustache (men..... before there are any rude jokes from my husband), your pubic hair, your body hair. Of course there always is an upside..... no more shaving! So you have to decide to 'wig or not to wig', or to wear a scarf or hat or just go commando. Another thing to get your head around and brace yourself for the inevitable  'Oh, you poor thing...', nothing else in cancer provokes quite the same reaction as hair loss. I've just had the second dose of my second line of chemo and was warned that this lot (Irinotecan) may cause hair loss and indeed it is thinning, only gradually at the moment, but I'm constantly aware of loose hair around my shoulders, whether I'll succumb to a wig in the heat of this summer or brave it and go commando remains to be seen!
Chemotherapy as I've gone into in a previous post is delivered often through a PICC line in the arm or a central line in the chest, just above your heart, more visible signs, easily covered in the winter, but a whole different ball game in the summer!

Visible signs are often as difficult for the onlooker as they are for the patient, they can't avoid what they see, a constant reminder of the cancer that may still be attacking the patient somewhere inside their body. Or just reminders of a battle won, but never forgotten, constantly at the back of the former patients mind whenever a new ache or pain arises.

So it's the invisible scars and changes that no-one thinks about, that aren't mentioned on first diagnosis, that creep up on you and like the cancer mutate in your mind and on your character.

In just under two years since I was first told the news no-one ever wants to hear. I have changed, visually in my body for me to see, my family to witness and others to hear about. But it is 'me' who has changed most. I am not the person I was two years ago, I am not the same wife Bob was used to coming home to each night. I am not the same mother to 'M' and 'H', both adults now, that they thought they knew how to handle. I know I've changed, so it must be obvious to others too.
I've had to learn to be tough, both in body and mind. Daily sometimes, I have to fight the system that should be helping me to fight this disease. To check and double check that appointments are made, scans arranged; that departments in the same hospital are co-ordinating with each other, that different hospitals notify each other of procedures carried out or need to be carried out. I shouldn't have to do this, it is yet more stress and stress causes cancer! But the system is collapsing before our eyes, the eyes of patients fighting the system like me, the eyes of specialist nurses who are dealing with hundreds of patients like me, too many for one nurse, but some of them are fighting to keep their jobs because the system deems them unnecessary, too expensive; the eyes of the surgeons and oncologists who have to juggle their meagre budgets, to encompass fairly for all their patients.
I know I'm living with a time bomb, a very unpredictable time bomb with an indeterminate length of fuse. I know that the result of a scan can send me into euphoria or the depths of despair, I have to deal with this a minimum of every 3 months, in 5 months between last November and March I had 9 different scans, only one of them brought reasonable news.
So this time bomb has changed me, it's hardly surprising. I don't suffer fools gladly anymore, I speak my mind, whereas before I would have smiled sweetly and let whatever it was pass me by. I am watching me, 'someone who knows they are approaching their latter years' who says thing as they are, who needs to put their family in order while they can. I am doing things for me now, putting myself first a lot of the time. It's still not too late for regrets, I can change, I am enjoying a new 'career' doing things two years ago I wouldn't have dreamt of, meeting people I would never have met, made new lifelong friends. I am the confident person now, that other people thought I was, but wasn't, it was a front I struggled with mentally for all my adult life, yet cancer has rid me of my anxiety and depression, too high a price to pay? I'll probably never be able to answer that question.

So when you look at the relative, friend, patient, colleague with cancer, don't just look at the scars, the hair loss or the tubes and bandages, look into the eyes of the person and see the changes inside, I am lucky, my cancer has made me stronger, but to my family and friends, sometimes I am a stranger, not the person they thought they knew, sometimes they struggle to understand the new me, I'm not surprised, sometimes I struggle too.


  1. Interesting post, matey .. plenty to think about there. Thanks for writing it ...

    I have got less likely to speak my mind than I used to be, funny, eh! But it has changed me, massively, the constant obsession with loos and poohs is tiresome, to say the least, but on the other hand I am more reflective and calmer, really, which is good for me!

  2. I should not have read this at work, I'm struggling to hide the tears.

    A very well written piece, that has managed to put into words a lot of familiar feelings - the non physical side of c is often as hard, if not harder, to cope with. Personally I can relate to a lot of what you say - I used to be a wife, I used to put things off until tomorrow, I used to worry far too much about what people had to say. I'm no longer a wife, sad but the best decision moving forward - I say yes a lot of the time (too mcuh sometimes) as I want to experience everything life has to offer and take chances while I can - and I dont really give too much of a damn now about how people percieve me.

    But you are right - look into my eyes people, see "me"

    We should discuss more over coffee :)

    1. Love to! When are you free? I have chemo every other Thurs this thurs is one (31st) so am out of action till about Tuesday (lightweight)! I also work Tues mornings and Weds mornings! xx

    2. I'm normally home around 615 - am out working over the next couple of weeks though - so w/c 25th is good

  3. I relate to much of this. My cancer diagnosis gave me a confidence and authority I didn't know I possessed. My scars and stoma gave me an insecurity I didn't want to possess!
    Each scan was an emotional minefield. being told at the age of 30 that they were doing everything to keep me alive, but the scan wasn't showing any change for the better...
    Dealing with people who wanted to know how you were REALLY feeling - when you'd already told them - while constantly staring at you looking for the slightest sign of suffering. Worse of all, those who make the assumptions of how you should cope and what you should/shouldn't be doing!
    Alison, my thoughts are with you. x

  4. Thanks for sharing this post, Alison. A friend of mine was diagnosed with bowel cancer last spring, and so your post has been a glimpse inside that she's far too private to offer. I myself have dealt with breast cancer, so can understand the psychological impacts of scars and disfigurement . . . but nevertheless what you've described here is very different from my own experiences.

    Anyhow, yes, it is important to keep in mind that cancer is physical and psychological all wrapped up together.

    I look forward to following your blog. Thanks again.


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