Cancer Initiative Aims To Share Good Practice Across The NHS

This press release from QiC Oncology shows the success of the inaugural year of awards for excellence in oncology, with over 100 entries in 12 catagories.

Have been glad to be involved in this, putting forward the patients perspective.

Alison

Cancer initiative aims to share good practice across the NHS
QiC Excellence in Oncology awards ceremony will take place in November, 2012

Winners of the first Quality in Care (QiC) Excellence in Oncology programme will be announced on November 6 at The Hilton, Liverpool, during the National Cancer Research Institute (NCRI) annual conference ahead of plans to share the ideas behind this good care to an audience throughout the UK.

Supported by Cancer 52, Beating Bowel Cancer, the National Cancer Action Team, and industry partners such as Pfizer, BMS and Novartis to name but a few, the programme evolves from Pfizer’s successful Excellence in Oncology Awards and aims to recognise individuals or teams involved in the support, care and treatment of cancer patients in the UK across the NHS, voluntary and commercial sectors, with joint working and collaboration key to the QiC Programmes.

In its inaugural year, the programme has received more than 100 entries across 12 categories, which include Cancer Professional of the Year and Cancer Charity Initiative of the Year, as well as awards in line with the NHS Outcomes Framework, such as Patient Experience and Patient Safety.

There is also a Lifetime Achievement Award, given to an individual who has made an outstanding contribution to the field of cancer throughout their lifetime.

Regarding the number and quality of entries, Rob Day, UK Oncology Business Unit Head, Pfizer, said: “This is an excellent achievement and really demonstrates the importance of and interest in the awards.”

Following the awards, winning work will be showcased at events across the country, and will feature in QiC Connect – an online knowledge hub for healthcare practice in the UK accessible at www.qualityincare.org/qicconnect

Stephen Parsons, Director, National Cancer Action Team said: "The National Cancer Action Team believes that QiC Excellence in Oncology provides an effective means of both celebrating and learning from new ways of working which will help to drive up the quality of care."

Jenny Ritchie-Campbell, Director, Cancer Services Innovation, Macmillan Cancer Support said: "Macmillan Cancer Support aims to support people with cancer every step of the way and push for better cancer care. We are delighted to support the Quality in Care Oncology programme which will identify and share good practice and help to spread the expertise and knowledge of successful innovations."

Pat Haye, Director, Thames Valley Cancer Network said: "Cancer Networks are a vehicle to drive quality improvements, which is achieved by working in collaboration with many clinical teams and partners. The TVCN sees these awards as a way of recognising the invaluable work and contribution of these teams that continuously deliver innovative, effective cancer care.”

Visit www.qualityincare.org/oncology for further details on QiC Excellence in Oncology, including the full list of categories and supporters. Finalists will be announced on the QiC website in the middle of September.

For details on how to book a ticket for the awards ceremony in November, contact Louise Bellamy at lbellamy@qualityincare.org.

Further information about QiC Excellence in Oncology:

Quality in Care is a series of programmes aimed at recognising quality and productivity in line with the Department of Health agenda around QIPP. The ultimate aim of the programme is to identify, showcase and share initiatives which have been created in the NHS and are already helping to improve the quality and productivity of diabetes care. Other current QiC programmes include QiC Diabetes, while future programmes will cover rheumatology and respiratory disorders.
Website: http://www.qualityincare.org
Blog: http://www.qualityincareblog.org
Twitter: @qicprogramme

PMGroup is a leading international multi channel media group, dedicated to the pharmaceutical sector, extending beyond the UK into Europe and the US. PMGroup core brands include: Pharmaceutical Market Europe; The Directory; Communiqué; PMLiVE.com; Communiqué Awards and the Pharmaceutical Market Excellence Awards (PMEA).
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Ode To a Stoma

You know you have a stoma when.... You change the bed thrice in a night. But, you are still here to sleep in your bed. You know you have a stoma when.... People are banging on the door of the train's loo you've been in for half an hour. But, you are on that train going somewhere special. You know you have a stoma when.... The dress you dreamed of wearing to your sons wedding doesn't quite hide the bulge. But, you are there to see your son marry his beautiful bride. You know you have a stoma when.... You have a RADAR key to open the door to every disabled loo in the country. But, you are here to travel the length and breadth of our beautiful Island. You know you have a stoma when the only other option is death. But, you revel in the new life you have, the grandson you might never have known and the new friends that come into the life you never properly appreciated.

Radiofrequency Ablation Therapy (RFA) ...The Patients Version!

After my first line of chemotherapy, Oxalyplatin and 5FU (FOLFOX) although it was very successful in destroying all the tumours in my lungs, there was one particularly stubborn one in segment 3 of my liver that was left behind and was now small enough to be treated by RFA (Radiofrequency Ablation Therapy).

I went up to London to speak to the liver team to check that I was fit enough for the procedure and that I fully understood what was being done, the risks and benefits.

A few weeks later, I was admitted the night before the procedure was to take place and put on nil by mouth at midnight. Now, I have an ileostomy and my fluid intake is necessarily  more than the normal patient, as I lose it out of my stoma before it has gone to all the right places! So, when I am nil by mouth I dehydrate quicker than the normal patient, so I always ask to be put on a drip to counteract the dehydration and the inevitable headache that comes with it!
The next day dawned and I was taken to the procedure room and given my general anaesthetic. General anaesthetic is used more often these days than local anaesthesia and sedation, to minimise discomfort and ensure that there is no movement, as the procedure is a very precise art and any movement can displace the siting of the probe, therefore not hitting the right spot!

When the patient is under the general anaesthetic they are placed in a CT machine, so that the consultant radiologist can pinpoint accurately the tumour. A probe ( electrode), or several probes are then inserted through the abdominal wall, guided by the CT machine, into the centre of the tumour(s). The electron is then heated to a very high temperature to destroy the tumour from the inside out! The joy of this is that no other tissues are damaged during this process and there are no entry or exit burns. Hopefully all the tumour will be destroyed, but treatment can be done again if the tumour unfortunately starts to grow again.

My procedure took about 2 hours and I woke up in recovery very quickly as the amount of anaesthetic used is minimal.  My consultant radiologist came to see me there, to tell me that as far as he was concerned the procedure had been successful and he had not needed to do as much work as he had first thought. He warned me that I was likely to get pain in my shoulder from the procedure, which would last approximately a day, this is because nerves in the liver are damaged during the procedure and they are connected to feeling in the shoulder area. Later on I was also likely to get localised pain in my liver but this was unlikely to be severe and both pains would be managed by analgesia. A small dressing had been placed over the tiny hole made by the probe and that was the only visible evidence of the RFA.

I was taken back to the ward and rested for a while before being allowed to eat, I like my food and little is likely to spoil my appetite! The pain in my shoulder did indeed kick in later and was worse than I was expecting, it actually felt as if I'd been kicked by a horse! As I'd been informed the pain lasted for only a day, but by this time my liver was extremely sore and was making walking difficult as it was making me bend double, it was decided to keep me in another night to monitor the pain. The next day dawned and although the pain was still bad, the after affects of the anaesthetic had lifted and I was managing the pain better so was allowed home that afternoon. I improved daily at home and was back at work the next week with no after affects. 

So RFA is a very simple procedure, yes there are always risks with any procedure including the anaesthetic, but the success rate is high, you can have RFA multiple times on an increasing range of tumours both in the liver and lungs. It is quick, minimally invasive, with no side effects and as in my case has eradicated that particular tumour from my liver.

Yes, I would certainly consider it again, at the moment I have six tumours on my lungs that are too big or in the wrong place to be considered for RFA, but if chemo is successful in shrinking them, then maybe RFA will be considered for them and with time and increased knowledge and practice, RFA may also be suitable for tumours that would not have been considered for treatment before. 

RFA is an exciting development in the treatment of tumours and I look forward to its increased success and the use of it in in many more hospitals in the UK.

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.

Things that go bump in the night.......

Saturday 28th January 2012, a lovely day ended with going to our friends house for dinner. We had a lovely evening, lovely food, a bit of wine and beer and a few board games to end the evening. 2am the next morning I heard my husband up being very sick in the bathroom and again 20 minutes later, this carried on till about 10am the next morning when he fell into an exhausted sleep. Oops, prawns I thought, we'd had them for starters the previous evening and they are not my husbands favourite food! How do I tell my best friend that she's given my husband food poisoning? Anyway he got a little better through the day, but was still too weak to go to work the next day, but was at last keeping things down.
I made a bland macaroni cheese for supper that night, which he ate a decent portion of, but when I came to eat it found I had no appetite and my stomach felt like a washing machine on the spin cycle! Oh no, was this me also going down with food poisoning, I doubted it, I am very rarely ever sick, only ever about 6 times in my life and mostly as a small child. However as the evening wore on I certainly didn't feel right, never actually had a stomach ache, just felt odd, getting colder by the minute and feeling a little odd. So pyjamas on, I went up to bed, decided on the spare room as I didn't want to disturb the husband as he was still not right, it was about 8.30pm by this time and I shivered under the covers for a while before falling into a very restless sleep. I woke about midnight feeling that I needed to get to the bathroom quickly, I needed a wee and my ileostomy bag desperately needed emptying. I got to the loo, but what happened after that I don't remember, except I woke up again on the bathroom floor and lay there for a while before realising where I was, eventually hauled myself up thinking that my head hurt and the next thing I knew was Bob shouting at me and shaking me, yes I'd gone down again and this time my back was in agony, my head was throbbing and I was wedged awkwardly between the loo and the hand basin, worse still, my stoma bag had burst and the contents of an obviously upset stomach were spread everywhere and I could not move.
Bob dialled 999 and within a couple of minutes an ambulance had arrived and 2 paramedics were in the bathroom scratching their heads wondering how they were going to deal with whole sorry scene. They were wonderful, from covering my modesty, and not mentioning the mess I'd created, to just worrying as to how they were going to extract me from my entanglement with the bathroom furniture! Eventually I was in the ambulance for a very uncomfortable 30 minute journey to the hospital. we went the long way via the motorway to avoid the discomfort of the many potholes on the normal route!
It was eventually decided, after passing out again, being sick and more unmentionable problems with my ileostomy that I had the noro virus, obviously passed on to me by Bob, who we'd thought had food poisoning! My back had been x-rayed and deemed OK, but by this time, my ribs were hurting immensly and I had two beautiful black eyes, but as I had the noro virus, I was taken to an isolation room where I spent the next week. The nurses were wonderful, they never complained about how many times they had to change the sheets or wash me, I felt like a baby, no energy, no appetite (and anyone who knows me knows that really is a sign to worry about!) Eventually they decided I was well enough to be put on the normal ward and the first time my feet hit the ground I felt as weak as a kitten, not having been out of bed for almost  a week. A few days later, as I'd suffered a head injury and gone unconscious, I had to have a CT scan of my skull to check for head injuries, so I was wheeled down to the all too familiar CT room by a friendly porter. CT scan was done and I was taken back to the ward, however an hour later my lunch was snatched away from me and told I had to go back for another scan, this time with contrast and I wasn't allowed to eat anything for a while. Again, back to the CT department, canular in, contrast injected through the canular and another scan done. I went back and managed to scrounge a sandwich for lunch and then decided to go for a walk as I was beginning to feel a little stronger and was getting a little stir crazy. On my way back into the ward as I passed the nurses station a Dr, whether he was a junior or registrar I don't know, said to me quite casually "Oh, I need to talk to you about your scan, they've found something they are a bit concerned with." I got that horrible sick feeling, my legs already jelly like were wobbling fiercly and I went cold all over, "What do you mean concerned with? Head injury concern or cancer concern?" I asked, "Oh, cancer concern" he said casually, "We think it may be a secondary tumour!" As you can imagine, my head spun and I had to grasp the wall for support, while all around nurses etc were just getting on with their normal jobs. I was furious all of a sudden and told him I was feeling very faint, had just recovered from noro virus and did he think the middle of a busy corridor was the best place to break this sort of news? He hung his head and mumbled probably not, at which I told him that I should hear this sort of news with some support and in a more private place! I never did get the support that day except that I rang my son immediately who I knew was working nearby and my husband came as quickly as possible. Anyway, my oncologist arranged an MRI scan and after a horrible two week wait I heard that I had a benign mass inside my head that was made up of lots of blood vessels and had probably been there years, not the best of news, but much better than it could have been, but now I've had another drug denied me as Avastin is not conducent with blood vessels that could bleed easily, especially in the brain!

You never know what is around the corner in this game, I met some wonderfully caring people and then again some people who are born with their feet firmly implanted in their mouths. Surely common sense tells you a bit of diplomacy is required when imparting bad news? I've had bad news several times now and it varies in it's telling. I know clinicians do have 'courses' or whatever in how to impart this sort of news, but do they actually listen, or think about what it is like to receive such news? Perhaps patients telling clinicians what it is like to live with the roller coaster that is cancer and all the emotions we go through, may touch a chord, at the moment from what I hear from other patients the imparting of such news or worse is similar to my own experiences. Clinicians, you only get one chance to get such news right, please make sure you do, it's what's left of our lives you're playing with.

Don't be an April Fool!

Ok so it's the 1st of April, April Fools Day, the day for practical jokes. It's also the start of Bowel Cancer Awareness month here in the UK. Can you remember when you first became aware of bowel cancer? I expect it was because either you, a close relative, friend or collegue at work had it. Or you had embarassing symptoms that you didn't want to go to the Dr's about and thought you could sort out yourself, so you googled your symptoms. Did your blood run cold when your symptoms came up with 'Bowel Cancer' as a possibility? Mine did...... so I kept googling till something else 'fitted the bill' in a more acceptable way. I'd never heard of bowel cancer till then and for F**** SAKE it is the 2ND BIGGEST KILLER FROM CANCER IN ENGLAND! So why are we not aware? Because we are british, because it's embarassing, because we were brought up only to whisper as an infant "I want a poo mummy" and if we said 'that' phrase loud enough for anyone outside the immediate family to hear, we probably got our legs smacked! Yes, I'm talking about my generation, I was born in the 50's. But what I learnt, I passed on to my children and so it goes. Comediens will talk/joke about anything won't they? Won't they....? When was the last time they joked about bums, poo, rectum, anus, colon, constipation, diahrrea, colostomy bags, ileostomy bags, stomas????? Matt Lucas has a wheel chair, we have no problem with that, tits, boobs, knockers, bangers, we've heard every name in the book for them. Penis, balls, testicles, dick, meat and two veg, need I go on? So if we hear them joked about on TV in cartoons, in books, we gradually become more comfortable with the 'words' and will repeat them to our friends, draw cartoons of them on our school books, graffitti them on the subway, on bridges and factory walls. When was the last time you saw a word used in conjuction with symptoms of bowel cancer on a cartoon or graffitied on a wall? So somehow, we HAVE to make it acceptable to say these words, so that we become more comfortable with them and can go to our GP and say "I have blood coming out of my rectum, I'm worried about it, please will you examine me?" a couple of weeks after it happens, instead of a few months, a year or longer when you go in to the GP and tell him about your joint pain and then as you're about to leave say in a mutter "Oh sometimes I have a little bit of blood in my poo/on the tissue...... I'm sure it's only piles" and rush out relieved when he hands you a prescription for pile cream without examining you!

So, yes it's April and Bowel cancer Awareness month and we must all play our part in educating the rest of the population who are in blissful ignorance of the symptoms, or worse, suffering in agony, stressed, all because they are too embarassed to go to their GP and talk about their symptoms in the same way as they would with a sore throat.

Beating Bowel Cancer a charity I support that raises awareness of symptoms, educates, advises and supports patients, has rolled out a new campaign called 'Bowel Movement' ....yes it's a play on words that may shock.... good, hope it does, might make people sit up and take notice! 'Bowel Movement' is endorsed by the England rugby player and patron of Beating Bowel Cancer Matt Dawson and wants people to pledge their support online to helping to spread awareness however they can, the link is here http://www.beatingbowelcancer.org/bowel-movement

Something easy to do is get a symptom poster either from me or Beating Bowel Cancer and put it up at work on the back of the loo door, so people can read in privacy. If you want one from me email me at saltanatabad@hotmail.com with your address and how many you need.

So please don't be an April Fool, don't ignore your symptoms if you have any. Spread the word, so that others are also aware, talk about bums, poo etc without feeling the need to use signs or whispers. I was an April Fool and it really is not very funny

Stomas, ileostomies, colostomies......... dispelling myths!

Just about everyone has heard the word 'colostomy'. What does that word conjure up for you? If you, or a relative or friend have a colostomy, or an ileostomy you probably know only too well. But at some point you didn't, you had no idea, one of lifes mysteries. You knew it was a way to 'poo' into 'something' if you couldn't 'poo' normally, but probably not more than that. We don't like to ask questions like 'Well, how does it actually work?' 'Where is it?' 'What is the poo collected in?' 'What does it look like?' 'Does it smell?' 'Does it hurt?' 'How do you cope?'

I am going to try and tell you simply about stomas, ileostomies and colostomies, so that you are in the dark no more, you don't have to wonder or pluck up the courage to ask me or anyone else. At the end I will include photos of my ileostomy and bags, so if you don't like to look at those sorts of things don't go right to the end!

I too often wondered about these things and thanked God I didn't need one, as usual, you imagine the worst and are horrified by the thought. Before writing this post I thought back to what I had thought a colostomy/ileostomy with container for collecting waste looked like. The nearest I'd got to one was seeing urine catheter bags in hospital, so I'd imagined a tube stuck somewhere (I had no idea where) on your body, going into a large bag, strapped to your leg which would be hidden by clothes! I could imagine the smell following you around offending everyone in your path and that it just wasn't very socially acceptable. Are you with me here? Anyone else with similar pictures in their head or was I the only person who was ignorant and had never plucked up courage to ask or find out?

I May 2007, I was forcibly thrown into the world of stomas and ileostomies, when my husband, who had recently been diagnosed with ulcerative colitis, had an emergency operation to remove his bowel/colon (large intestine) and therefore needed to have an ileostomy and stoma formed. So when in June 2010 I was diagnosed with bowel cancer and told on the same day that I would need a similar operation and would need an ileostomy, that was the least of my worries as I knew what it was, what it looked like, that it didn't smell and that my husband who'd had his for 3 years by then, coped remarkably well. My consultant I think, thought I was still in a state of shock as most patients abhor the idea of having to walk around with a bag of faeces on the outside of their bodies! I was just happy that if that was the price to pay for ridding me of cancer, then it well worth it.

Ok! So now we get down to the 'nitty gritty' of what everything is! First an ileostomy is formed when the whole of the large colon is taken away and a 'stoma' is formed from the end of the 'ileum' the end of the small intestine. A colostomy is formed when only part of the large colon (large intestine) is taken away and the 'stoma' can be formed from the end of the remaining colon. A stoma is the part of intestine that is taken out of your body through a small incision on your tummy, on the left hand side for a colostomy and the right hand side for an ileostomy. It is folded over and stitched to your stomach wall. The dictionary definition for stoma is 'a mouth like opening'. A stoma has absolutely no feeling in it, I touch mine for cleaning purposes and feel nothing. a stoma looks very pink, because it has a huge blood supply to it, as it has no feeling it can bleed easily, so care has to be taken not to knock it or catch it with a fingernail!

Right! So now you know about the different types of 'ostomies' and 'stomas' so now we come down to how the poo is collected! A bag about 4 inches across and 8 inches long with a hole cut in the back of it to poke the stoma through, is stuck onto your tummy around the stoma with a very strong sticky flange! If you have a colostomy, your poo is very similar to what you would normally pass and is a 'formed' motion, but you have no control over when you pass it, which is why it is collected in a bag. At a convenient time the bag is taken off and disposed of and a new bag attached. An ileostomy is slightly different, as you have lost so much of your digestive tract, your poo is not formed and is very loose and watery, again you have no control over it's output and need a bag, the output happens fairly continuously in small amounts and you have to empty the bag into a toilet before it becomes too full! The bag has an opening at the bottom secured usually by rolling it up several times and securing it with velcro! As the bags are securely glued to your stomach and the end of the bag is securely closed, there is no smell and your 'secret' is safe!

How do I cope with my stoma and ileostomy? Mostly, very well, I don't let it stop me doing anything, I've swum, both in the sea and pools and no, the bag doesn't leak. Eight weeks post op I went to Wales and went on a zip wire trail at an adventure park (please don't tell my surgeon!) I do always carry spares with me in case of accidents, luckily it's very rare and I have a change of clothes in the car, which I've never had to use, but they're my insurance policy! The only problem I have is that occasionally my stoma blocks; that is the poo gets stuck somehow and blocks up the system and everything backs up and has nowhere to go...... I get a warning nausea feeling and a gradual pain around my stoma and then know it's going to happen, so it's bed for me for a few hours 'till it clears, as the pain is really not very nice and I just have to put up with it. I choose not to take the very strong painkillers I'm prescribed for it, as once it clears I'm fine and if I want to go out, have an appointment or should be working I can, with no side effects and am able to drive. It's very rare for this to happen, I'm just unlucky and am due to have an op to see if they can untangle the small intestine, where there is possibly a kink or a loop in it.

Everyone who has a stoma, is introduced to a stoma nurse at the hospital they are treated in. A stoma nurse is a specialist nurse, very knowledgable and trained in all stoma related issues. I first met my nurse a few weeks before I had the operation to remove my colon. She talked to me about what would happen and then asked me what I knew about stomas, the look of relief on her face when I told her I was not bothered as my husband had one and there was little I didn't know about the ileostomy I was due to get, was a picture. Some times patients are so ignorant or fearful of the unkown about stomas etc that they refuse to accept that they need one and sometimes actually refuse the operation. This is so sad, as it actually saves your life and as so many people who need stomas have suffered for maybe years with digestive and toilet problems and having a stoma would relieve them of these worries and pain. I have spoken with a few of these people, who have been amazed that I lead a normal life, dress in normal clothes, that the bag doesn't show and that I don't smell. Anyway, I digress, my stoma nurse gave me a practice kit to take home with me, it consisted of a pink foam 'fake' stoma to stick on my tummy and some crystals to put in an ileostomy bag and fill with water to represent the weight and bulk of faeces. Together we talked about the type of clothes I wear and where my trouser waistband usually sits and she marked me up for my stoma site in a lovely purple indelible pen (so that the surgeon knew where to make his incision) and off I went. The next day I stuck my foam stoma to my tummy, filled the bag with crystals and stuck the bag around my pretend stoma, everything seemed secure, I had remembered to close the 'opening' on the bag and off I went to do my weekly Sainsbury's shop. It was summer, I had light clothes on, would people notice the slight protuberence on my tummy, would it fall off, slither down my cropped trousers and reappear at my feet? I felt as though I had a beacon on my head with an arrow pointing to my tummy saying, 'Colostomy bag here!' But I needn't have worried, no mishaps, no people pointing and giggling and when I bumped into someone I knew, there were no furtive glances at my tum, so with morale boosted I went home to see if the family noticed, which of course they didn't, just the usual question, 'What's for tea Mum, I'm starving?'

After my op, my stoma nurse came to see me most days, to check there was output in the bag, to check the condition of the stoma and the stitches that were keeping in it's new place outside my body and to help me learn how to clean, look after it and change the bags. My stoma nurse quickly became my friend, I was constantly on the phone to her about all sorts of minor things, that in those days seemed hugely important. We are still friends, sometimes I speak to frightened patients for her, I help run a support group and give talks to nurses for her on what it's like to have a stoma at first and how they can help patients on their wards have an easier and more comfortable stay.

Having a stoma saved my life as it does for many people, it's not something to be frightened of, with the right help you will adapt easily and realise that after all, it is just another way of going to the loo!

Right! Under here are pictures of my stoma and the bags! Don't look if you're squeamish!!

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 A stoma bag for an ileostomy showing the flange and circular opening to go around the stoma. You peel off the backing film (where blue arrow is) before applying the flange to the skin.

 This is the side of the bag that is away from your skin, opening is at the botttom, showing velcro fastenings in place.

Opening revealed, this can be folded up again when emptied and sealed with the velcro straps. 

 Bag in place on tummy! Usually my pants are pulled up to flatten it more so that the lines show less under clothing!

My stoma revealed to the world! Looks very 'red' but that's because of the very good blood supply to it. It stands about 3 cm proud of the skin, has no feeling and after stitching is now permanently joined to my skin. You can just see the 'spout' in the middle of it where it empties! I'm proud to have a 'Bum on my Tum!'