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
Sunday, 1 April 2012
Thursday, 8 March 2012
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!
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!!
|
V
|
V
|
V
|
V
|
V
|
V
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!'
Sunday, 26 February 2012
Everyone needs a rock.........
I'd been diagnosed with cancer for a few months and had had my surgery, sleep was not easy due to discomfort at night and the 2am syndrome of 'blowing everything out of all proportion'. As usual I was up trying to find a distraction to stop my mind doing it's usual mianderings down the 'what if' road. I had a cup of tea and my laptop and had exhausted my usual 'beat the clock' PC games that were my normal form of distraction and again my mind was veering back to my cancer. So back to 'googling' bowel cancer, this time I came up with 'Beating Bowel Cancer' not sure what this site would hold, perhaps a cure or a blog of someones experience, I opened it up and came upon the charity that is now, my rock and provides me with an outlet to occupy me, educate me, comfort me, answer all my queries and questions and are basically 'My Rock' the people who have let me change my life around for the better and open up opportunities to me that I would never have thought possible.
Beating Bowel Cancer is a charity set up to provide awareness of bowel cancer, it's signs and symptoms to both patients their relatives and friends and clinicians. They employ specialist nurses with a wealth of knowledge about bowel cancer and it's associated problems, to man a telephone help line begin_of_the_skype_highlighting 08450 719 301 end_of_the_skype_highlighting open during office hours and help is always at hand with them, by email nurse@beatingbowelcancer.org They have produced an enourmous amount of literature about the disease in booklet and leaflet form http://www.beatingbowelcancer.org/booklets-factsheets which is written in a form that anyone can understand, informing you about diagnosis, your cancer, the different forms it takes, the pathway your cancer is likely to take, about different types of surgery performed, recovery, about chemotherapy in all it's guises, radiotherapy and other newer or less commonly used techniques. Learn about how to adjust your diet after surgery or stoma reversal, body image, stomas, colonoscopies and ileostomies. Read how unfortunately bowel cancer sometimes spreads (metastasises) to the liver, what this means, treatments and surgery that is available when this happens. Read real patient stories to inspire you, to teach you that bowel cancer does not necessarily mean 'the end' and how perhaps you could become involved in some very worthwhile work for the charity.
An important part of the charity's help for patients and relatives is the forum, here anyone can register to read the posts and maybe find answers to their questions already posted there, or post their own questions. The forum opened in March 2011 and has already had 4227 posts in 497 topics by 644 members, so as you can see has proved to be a runaway success. I enjoy being one of the more senior members answering questions from people embarking on the cancer journey for the first time, frightened, bewildered and knowing precious little about the pathway their new diagnosis has landed them on. It's not just the 'newbies' we help, we also advise people who've been diagnosed with bowel cancer for some time, when their journey takes a new, maybe unexpected turn, we can advise from our own experiences, provide comfort to relatives, who actually sometimes have the hardest part to play in any cancer and try to convince patients that actually the diagnosis and the ensuing wait for scans, tests and the ultimate decision of how their cancer will be treated, IS the hardest part. The nurses employed by the charity also answer forum questions with their expertise and explain proceedures, jargon and can direct people to other sites if the need arises. I also post questions frequently, answered by the nurses or other members of the forum who have been there, done that and worn the T-shirt!
Beating Bowel Cancer and lots of it's members including myself are also regular posters on Twitter offering support to tweeters with bowel cancer, so look for the tags @bowelcancer and @alipom Please feel free to follow us, join in with tweets and look out for articles relevent to the disease that we retweet.
Beating Bowel Cancer runs many campaigns annually. One of the longest running and most successful is 'Be Loud, Be Clear'
Be Loud Be Clear is their annual national campaign to make noise about bowel cancer and raise awareness of the issues affecting bowel cancer patients. Be Loud Be Clear, which takes place in the last week in January and has been running for over a decade, is also an opportunity for supporters to fundraise for Beating Bowel Cancer.
Each year, Be Loud Be Clear launches with a Parliamentary Reception for MPs, Peers and guests of Beating Bowel Cancer at the House of Commons. At this event they provide Parliamentarians with a new report about bowel cancer and ask for their support for our calls and sign their Early Day Motion. The Parliamentary reception for Beating Bowel Cancer’s Be Loud Be Clear campaign this year was held in the prestigious State Rooms of the Speaker’s apartments on the 25 January. This annual event aimed at boosting support for Beating Bowel Cancer’s aim to make Britain’s second biggest cancer killer a rare cancer.
They conducted media activity to support the campaign and raise the noise about bowel cancer in the national and regional press.
Their fundraising team works with supporters who are keen to organise their own LOUD activities and events for Be Loud Be Clear week, such as dressing up in loud clothes or wearing their famous bum shorts for a day.
I was lucky enough to be asked to attend the reception and hear our CEO Mark Flannagan hand over a report 'Equity and Excellence'. I had been asked to write a case study for the back page of the report on how I am involved in making decisions with my 'team' at my hospital, on my treatment and care, which I was only too happy to do. The report can be read here http://www.beatingbowelcancer.org/sites/default/files/images/finalweb.pdf
Of course any charity cannot survive on goodwill alone, so they have to fundraise to exist and help as many people as they do, me being one. There are many ways to fundraise from marathons to coffee mornings, sponsered walks, climbs, parachute and bungee jumps to auctions and the very successful 'Newsrooms got Talent' at the O2 and 'Decembeard' that was kicked off by Chris Evans on Radio 2 and not only raised many thousands of pounds, but also a huge amount of awareness. SO......... if you fancy raising a little money for us the team at www.beatingbowelcancer.org will be only too happy to hear from you, help with ideas and you with provide fundraising materials. You can also give monthly by direct debit https://www.edirectdebit.com/BeatingBowelCancer/form.aspx
Beating Bowel Cancer is a charity set up to provide awareness of bowel cancer, it's signs and symptoms to both patients their relatives and friends and clinicians. They employ specialist nurses with a wealth of knowledge about bowel cancer and it's associated problems, to man a telephone help line begin_of_the_skype_highlighting 08450 719 301 end_of_the_skype_highlighting open during office hours and help is always at hand with them, by email nurse@beatingbowelcancer.org They have produced an enourmous amount of literature about the disease in booklet and leaflet form http://www.beatingbowelcancer.org/booklets-factsheets which is written in a form that anyone can understand, informing you about diagnosis, your cancer, the different forms it takes, the pathway your cancer is likely to take, about different types of surgery performed, recovery, about chemotherapy in all it's guises, radiotherapy and other newer or less commonly used techniques. Learn about how to adjust your diet after surgery or stoma reversal, body image, stomas, colonoscopies and ileostomies. Read how unfortunately bowel cancer sometimes spreads (metastasises) to the liver, what this means, treatments and surgery that is available when this happens. Read real patient stories to inspire you, to teach you that bowel cancer does not necessarily mean 'the end' and how perhaps you could become involved in some very worthwhile work for the charity.
An important part of the charity's help for patients and relatives is the forum, here anyone can register to read the posts and maybe find answers to their questions already posted there, or post their own questions. The forum opened in March 2011 and has already had 4227 posts in 497 topics by 644 members, so as you can see has proved to be a runaway success. I enjoy being one of the more senior members answering questions from people embarking on the cancer journey for the first time, frightened, bewildered and knowing precious little about the pathway their new diagnosis has landed them on. It's not just the 'newbies' we help, we also advise people who've been diagnosed with bowel cancer for some time, when their journey takes a new, maybe unexpected turn, we can advise from our own experiences, provide comfort to relatives, who actually sometimes have the hardest part to play in any cancer and try to convince patients that actually the diagnosis and the ensuing wait for scans, tests and the ultimate decision of how their cancer will be treated, IS the hardest part. The nurses employed by the charity also answer forum questions with their expertise and explain proceedures, jargon and can direct people to other sites if the need arises. I also post questions frequently, answered by the nurses or other members of the forum who have been there, done that and worn the T-shirt!
Beating Bowel Cancer and lots of it's members including myself are also regular posters on Twitter offering support to tweeters with bowel cancer, so look for the tags @bowelcancer and @alipom Please feel free to follow us, join in with tweets and look out for articles relevent to the disease that we retweet.
Beating Bowel Cancer runs many campaigns annually. One of the longest running and most successful is 'Be Loud, Be Clear'
Be Loud Be Clear is their annual national campaign to make noise about bowel cancer and raise awareness of the issues affecting bowel cancer patients. Be Loud Be Clear, which takes place in the last week in January and has been running for over a decade, is also an opportunity for supporters to fundraise for Beating Bowel Cancer.
Each year, Be Loud Be Clear launches with a Parliamentary Reception for MPs, Peers and guests of Beating Bowel Cancer at the House of Commons. At this event they provide Parliamentarians with a new report about bowel cancer and ask for their support for our calls and sign their Early Day Motion. The Parliamentary reception for Beating Bowel Cancer’s Be Loud Be Clear campaign this year was held in the prestigious State Rooms of the Speaker’s apartments on the 25 January. This annual event aimed at boosting support for Beating Bowel Cancer’s aim to make Britain’s second biggest cancer killer a rare cancer.
They conducted media activity to support the campaign and raise the noise about bowel cancer in the national and regional press.
Their fundraising team works with supporters who are keen to organise their own LOUD activities and events for Be Loud Be Clear week, such as dressing up in loud clothes or wearing their famous bum shorts for a day.
I was lucky enough to be asked to attend the reception and hear our CEO Mark Flannagan hand over a report 'Equity and Excellence'. I had been asked to write a case study for the back page of the report on how I am involved in making decisions with my 'team' at my hospital, on my treatment and care, which I was only too happy to do. The report can be read here http://www.beatingbowelcancer.org/sites/default/files/images/finalweb.pdf
Of course any charity cannot survive on goodwill alone, so they have to fundraise to exist and help as many people as they do, me being one. There are many ways to fundraise from marathons to coffee mornings, sponsered walks, climbs, parachute and bungee jumps to auctions and the very successful 'Newsrooms got Talent' at the O2 and 'Decembeard' that was kicked off by Chris Evans on Radio 2 and not only raised many thousands of pounds, but also a huge amount of awareness. SO......... if you fancy raising a little money for us the team at www.beatingbowelcancer.org will be only too happy to hear from you, help with ideas and you with provide fundraising materials. You can also give monthly by direct debit https://www.edirectdebit.com/BeatingBowelCancer/form.aspx
Any one reading this post, who wonders if they, or a friend or relative may have bowel cancer, please go onto the site, phone the nurses if you want advice, a question answered, or just a shoulder to cry on, their shoulders are very broad, they've had to be, they've taken my weight many times, for which I'm eternally thankful and can never repay back how they have changed my outlook and life.
Friday, 24 February 2012
Poxy Oxy kills all invaders! .......well nearly all!
Six weeks after my operation to remove the primary tumours, which actually meant removing the whole bowel, saw me in my colo-rectal surgeons consulting room, to hear how well.... or otherwise the operation had gone. Before my op when I'd met with Mr W he'd assured me that he thought that we'd caught it early enough and that surgery should remove all the offending tumours and after recovery that should be it with monitoring for a few years. It was not to be, it seemed that the lymph nodes that were removed and later examined (as was normal with any cancer operation) showed that the cancer had spread. SO, preventative chemotherapy was advised. A bit of a bummer as I felt well and had expected to be able to draw a line under the cancer journey. So again more scans were arranged, a date to talk with an oncologist to discuss a treatment plan, what it would involve and how chemotherapy might affect me.
I started chemotherapy on Thursday December 2nd 2010 a day I will never forget as not only was it the first day of chemo, a venture into the unknown territory of side effects, constant blood tests, temperature monitoring, fortnightly appointments for monitoring health and how I was affected by the chemo, it was also the first day of the worst snow Kent had seen for over a decade. We woke up that morning, actually Bob woke up, I'd been awake all night, to almost a foot of snow! Now we had another problem, was the oncology unit open? Would we be able to get there, it was 10 miles away? If we got there, would we be able to get home again as it was still snowing heavily? I phoned the unit and yes, they were open and I was expected, business as usual! My son who works at the hospital was going to drive me in, stay with me for a while, do some work, then drive me home again, so I rang him and said that I was still going in. Meanwhile he'd been phoned by 2 work colleagues who said the main road in was extremely dangerous, no-one was using it! Panic! Now what did I do? Bob, who was supposed to be working in another part of the county decided he would chance the journey, but I was anxious about the journey home, it was snowing heavily, so after 5 hours of chemo what would the roads be like, would I be able to get home, what would happen if on the journey we got stuck in a drift, would I be well enough to walk home, what would we do? So, spades, plastic sheeting, welly boots, coats, hats, extra jumpers, scarves, gloves, duvets, blankets, food and drink, something for every eventuality, were packed into the car, it looked as if we were setting off for a journey to one of the poles!
The journey much to both of our surprises was as uneventful a journey as you could possibly hope to imagine. Yes, the snow was incredibly deep, but Bob is not fazed by this having driven for a job all his life and also ridden his vintage motor bikes to deepest Germany in far worse snow and always remained upright! We passed only a handful of other vehicles, but were overtaken by an ambulance!
The chemo unit on arrival was wonderfully warm and we were soon shown to a comfortable armchair surrounded by drip stands and units of drawers filled with equipment. A few days previously, I'd been up to the unit to have a PICC (peripherally inserted central catheter) line inserted into my arm. This is a thin tube inserted into a large vein on the inside of your upper arm and then guided to a spot in the vein just near where it meets the heart, so that the chemotherapy is delivered easily and absorbed into the bloodstream. A PICC line is the preferred method of delivering chemo as the line can stay in many weeks or months, which means that you don't have to keep having needles and canulars inserted every time you have chemo or need to have blood taken or any other drug or blood delivered into your body.
My chemo regime was to be two different chemo drugs, Oxalyplatin (or poxy oxy as we patients tend to call it because of the side effects) and 5FU, the combination of these two drugs is commonly known as FOLFOX.
Each time you need anything inserted into the PICC line it has to be flushed through with saline, so that happens at the start of treatment, at the end and between each different drug used in the regime. So I was having 2 chemo drugs, an anti-emetic and also calcium and magnesium infusion to reduce peripheral neuropathy, so lots of flushing out of the line was needed, this is why the infusion of chemo takes so long and administred by specially trained nurses.
The first lot of drugs were set up on the drip stand and attached to my PICC line and the infusion started, I waited with baited breath, would I react straight away to the drugs, as anaphalatic shock happens a bit too frequently for my liking, but nothing felt different, so I sat back and enjoyed the coffee and biscuits brought to me by the volunteer MacMillan workers that keep everyone plied with drinks and biscuits and sandwiches at lunch time!
Eventually the infusions were finished later in the afternoon and I then had to be fitted with a pump that would deliver the 5FU drug to me at home over the next 46 hours.
So now the journey home! it had stopped snowing a few hours previously and the traffic during the day had softened and removed a lot of the snow, so fortunately our journey home was uneventful, you will never realise how good it was to get indoors, relieved, very tired and happy to be home safely!
Two days later a district nurse arrived spot on 46 hours after the start of the 5FU infusion to disconnect the pump from me and relieve me of the bottle that had been permenantly strapped to my body. The first round of 12 sessions of chemotherapy had finished!
Side effects are inevitable with chemo and they affect each person slightly differently. The main ones with poxy oxy are nausea, sickness and peripheral neuropathy. P/N affects the nerve endings, mainly in the fingers, hands, toes, feet, tongue, mouth, throat and face. The first sign that anything was happening, was the first time I went to the loo while the chemo was being pumped through my veins on the ward. As I washed my hands I was aware that the cold water I was using felt as if it was stinging my hands, they were tingling and felt as if I was grasping nettles, not very nice. This got worse over the next week and I had to devise ways of getting things out of the fridge and freezer.... you try lifting milk out to make tea with using oven gloves! Going out was a nightmare, remember this was December, right at the start of a very cold winter! My neighbours got used to me looking like an Arctic explorer, as by this time the cold was affecting my face, mouth and throat, making breathing in cold air a nightmare, my lips felt like they were burning, my tongue as if I was chewing broken glass and nettles and my throat would completely close up, making breathing difficult. This also happened if I drank or ate anything cold, so water, squash and milk were drank slightly warm, YUK! Periperal Neuropathy increases with each infusion and the numbness and tingling worsened and eventually started in my toes and feet, which then needed thermal socks, many layers at a time and warm slippers and boots and layers of socks when I ventured out! Towards the end of my treatment the p/n affected the nerves in my spine and I suffered something called Lhermitte's sign which meant that every time I put my chin towards my chest I got a jolt like an electric shock down my spine and legs and ended in my toes, not pleasant and frightened the hell out of me the first time it happened, I was almost relieved when my oncologist confirmed it was associated with dear old poxy oxy!
I was lucky though as although I suffered p/n and a fair amount of tiredness, I never felt sick, due to the anti-emetic used with each dose of chemo, my hair did thin a little, but that never concerned me as it doesn't hurt, I was more upset that I wasn't allowed to dye my hair during the 6 months of chemo and therefore displaying my roots to the world!
After 3 sessions of chemo I had to meet again with my oncologist Dr S for what I assumed to be a chat about side effects and how I was generally coping with chemo, by the way I was having chemo every fortnight! Anyway Dr S did indeed ask me about the side effects, checked my blood counts, which had always kept well within the bounderies required to fight infection (chemo kills the white cells while doing it's job of killing the tumours!) due, I'm convinced by the Life-Mel honey I took throughout my chemo. But that was not the whole reason for him wanting to see me, the CT scan I'd had 7 weeks previously unfortunately showed that the disease had spread, metastasised, to both my liver and lungs, with apparently many small tumours growing in each. This meant that the chemotherapy I was having was no more preventative it was palliative, my cancer was now staged at 4, which meant it was now at an advanced stage. My blood ran cold, what did this mean, I no longer heard what Dr S was saying, I don't think I was thinking beyond is this the end? I had not noticed a nurse come into the room at this time, but Dr S introduced me to my CNS (cancer nurse specialist) an expert nurse in colo-rectal cancer. She took me to the 'quiet room' the one everyone dreads going in, to sit in the easy chair, with the muted lights, cosy cushions, pastel emulsioned walls, flowers and chocolate box pictures on the wall. I was on my own, I'd been going to all my chemo sessions after the first one and blood tests and talks about how I was getting on with chemo on my own, I'm very independant, don't like fuss and have never in my life been treated like a china doll! The nurse asked me if I'd like her to contact my husband, but no, I'd handle this on my own, preferring to tell him at home once I'd got my head around the sudden, different route my cancer journey was now on. I can't remember what the nurse told me, all I was waiting to hear was was this the end, was there still the chance of a cure? I asked her eventually if I was terminal, it was very, very hard to get the word out, but I'd had enough of her pussy footing around the subject. No, she said they would still carry on with the chemo, but now it was a case of keeping the cancer at bay rather than curing me, that tumours would undoubtably pop up again and there was no promise that the chemo I was on would rid me of the tumours I already had. It was a waiting game to see if I would win phase one of the chemo versus tumour lottery. I asked about time scales, another difficult question to get out, she paused and said that she knew people with my diagnosis last 5 years.
............5 years! I will never forget that statement, how could it be 5 years max, I felt well, I was only 57, my son had only recently got married and my daughter was single, I had no grandchildren. Suddenly I was angry, very angry, I'm afraid I took it out on the poor nurse, complaining of delays in treatment, lost appointments etc etc etc. she listened and let me rant, I expect she had heard it before and was expecting it. I didn't cry, I rarely do, sometimes I wish I could, all that pent up emotion needs to come out somehow! I drove home alone, ridiculously calm (probably after the storm) and went home (it was around 6pm) to both Bob and Hazel at home waiting for me to cook dinner! I told them straight away, again one of the most difficult things a mother and wife ever has to do, Hazel again was horribly distressed, angry with a system that had promised a cure. Bob was ominously quiet, and I knew he was trying to deny the situation I had presented him with. The tears came a bit as we all hugged and I tried to console Hazel with the words that I was going to fight it with every bone in my body, I felt well and wasn't going anywhere just yet. Later I had to go through the whole thing again with my son Matthew, more tears, more reassurances.
Another 3 sessions of chemo passed. I had started making cakes, biscuits, brownies and cheese scones for the nurses, doctors and other workers within the unit and patients as a way to pass time between chemo's and a way of thanking the very overworked, caring and diligent staff. I made about 80 for each session, they were all eagerly anticipated and never any left at the end of the day! At this time I had another CT scan to see if the chemo was having any effect. Any cancer patient will tell you the scans between treatments and the ensuing wait is the worst part of the cancer journey as you never know what they will show. So it was with trepidation that I went for my appointment with my oncologist. This time he was smiling, the chemo was working and the tumours in both liver and lungs had shrunk cosiderably, I was half way through treatment and it could continue, it was having the desired effect, it was actually working better than Dr S had dared hope! As you can imagine I was extatic and for the first time in over 6 months I felt on the way back to the car that I was walking on air!
The chemo unit is a very serene place, no radio or TV's allowed so not to distract the nurses from their important and exacting job, patients chat to each other if well enough, as unfortunately there are sometimes some very sick people receiving chemo or needing blood transfusions because of a low blood count, which means that their chemo is suspended until their blood is capable of withstanding the risk of infection again. Some people are very sick whilst on the infusion and sometimes people do collapse. It certainly brings home how serious cancer is, how debilitating chemo is, it affects anyone from any culture, religion or class, it has no bounderies. We all knew how each of us felt, we felt each others pain and knew the path each other were walking.
One day a vicar came to talk to me, we often had 'men and women of the cloth' visit the unit to offer comfort to those who wished to receive it. I think of myself as a Christian, I was brought up to go to church each week until my teens, I was married in church and had both my children christened. But as an adult I never felt the need to go to church to believe in God, to act as a Christian. It is not something to do just for an hour once a week. I think it is enough to have 'Christian' values, to teach them to my children, to be a good citizen, to keep my marriage vows, to help society and be a 'good' person, So although I didn't want to get into deep talks with this vicar about my religion, I was prepared to have a few words with him. One of the questions he asked me was "I expect you must have wondered, why me?" without thinking I replied, "Why not me?" he was taken aback and I had to explain to him that 1 in 3 people get cancer and the number is rising, so the odds of getting cancer especially as you get older are pretty high! Why should I have different odds to the next person, I hadn't taken paticular care of my health over the past 20 years, I didn't exersise, I was morbidly obese and led a sedentary life style. All things I knew in the back of your mind are a recipe for bad health, heart disease and cancer risk, but I'd chosen to do nothing about it, so now my chickens had come home to roost. In fact it was more likely to be 'me' than anyone else. So now you know why this is the title of my blog!
The end of May saw me reach the end of my treatment, I'd managed well on my treatment, apart from the peripheral neuropathy and the tiredness that I had got used to, I still drove myself to and from treatments, appointments, scans and blood tests. I was still doing my voluntary job with the charity Hi Kent servicing and fitting hearing aids at clinics and in peoples homes. I ran the home, cooked, shopped and cleaned and generally tried to keep things as normal as possible for the family.
Again I had to have a scan to see what the final outcome ot the chemotherapy was. Again with trepidation I walked into Dr S's room and was again greeted with a smile and the very welcome statement that "I don't know how you've done it, but all the tumours except for a tiny one on your liver have gone! It's an excellent result. congratulations!" The best news ever! I nervously asked him if I was in remission and was told that at stage 4 it couldn't really be called remission, but for a while I could rest easy and say that the cancer was 'at bay'. He leaned toward me, fixed his eyes on mine for a few seconds and said "Alison, you must understand, this cancer will get you in the end, I don't want you to think that you are cured." I will never forget his words, or forgive him for taking away my moment of euphoria..... I knew I had advanced cancer, I knew the odds were not good, I knew I only had a 7% chance of living beyond 5 or 6 years, but I was happy that this time I'd beaten the tumours, I was smiling properly for the first time in months, only to be brought back to earth again with an almighty crash, so please, any oncologists out there, think how you talk to your patients, we are not stupid and desperately need those 'moments of euphoria!
A PICC line.
A portable chemo pump.
I started chemotherapy on Thursday December 2nd 2010 a day I will never forget as not only was it the first day of chemo, a venture into the unknown territory of side effects, constant blood tests, temperature monitoring, fortnightly appointments for monitoring health and how I was affected by the chemo, it was also the first day of the worst snow Kent had seen for over a decade. We woke up that morning, actually Bob woke up, I'd been awake all night, to almost a foot of snow! Now we had another problem, was the oncology unit open? Would we be able to get there, it was 10 miles away? If we got there, would we be able to get home again as it was still snowing heavily? I phoned the unit and yes, they were open and I was expected, business as usual! My son who works at the hospital was going to drive me in, stay with me for a while, do some work, then drive me home again, so I rang him and said that I was still going in. Meanwhile he'd been phoned by 2 work colleagues who said the main road in was extremely dangerous, no-one was using it! Panic! Now what did I do? Bob, who was supposed to be working in another part of the county decided he would chance the journey, but I was anxious about the journey home, it was snowing heavily, so after 5 hours of chemo what would the roads be like, would I be able to get home, what would happen if on the journey we got stuck in a drift, would I be well enough to walk home, what would we do? So, spades, plastic sheeting, welly boots, coats, hats, extra jumpers, scarves, gloves, duvets, blankets, food and drink, something for every eventuality, were packed into the car, it looked as if we were setting off for a journey to one of the poles!
The journey much to both of our surprises was as uneventful a journey as you could possibly hope to imagine. Yes, the snow was incredibly deep, but Bob is not fazed by this having driven for a job all his life and also ridden his vintage motor bikes to deepest Germany in far worse snow and always remained upright! We passed only a handful of other vehicles, but were overtaken by an ambulance!
The chemo unit on arrival was wonderfully warm and we were soon shown to a comfortable armchair surrounded by drip stands and units of drawers filled with equipment. A few days previously, I'd been up to the unit to have a PICC (peripherally inserted central catheter) line inserted into my arm. This is a thin tube inserted into a large vein on the inside of your upper arm and then guided to a spot in the vein just near where it meets the heart, so that the chemotherapy is delivered easily and absorbed into the bloodstream. A PICC line is the preferred method of delivering chemo as the line can stay in many weeks or months, which means that you don't have to keep having needles and canulars inserted every time you have chemo or need to have blood taken or any other drug or blood delivered into your body.
My chemo regime was to be two different chemo drugs, Oxalyplatin (or poxy oxy as we patients tend to call it because of the side effects) and 5FU, the combination of these two drugs is commonly known as FOLFOX.
Each time you need anything inserted into the PICC line it has to be flushed through with saline, so that happens at the start of treatment, at the end and between each different drug used in the regime. So I was having 2 chemo drugs, an anti-emetic and also calcium and magnesium infusion to reduce peripheral neuropathy, so lots of flushing out of the line was needed, this is why the infusion of chemo takes so long and administred by specially trained nurses.
The first lot of drugs were set up on the drip stand and attached to my PICC line and the infusion started, I waited with baited breath, would I react straight away to the drugs, as anaphalatic shock happens a bit too frequently for my liking, but nothing felt different, so I sat back and enjoyed the coffee and biscuits brought to me by the volunteer MacMillan workers that keep everyone plied with drinks and biscuits and sandwiches at lunch time!
Eventually the infusions were finished later in the afternoon and I then had to be fitted with a pump that would deliver the 5FU drug to me at home over the next 46 hours.
So now the journey home! it had stopped snowing a few hours previously and the traffic during the day had softened and removed a lot of the snow, so fortunately our journey home was uneventful, you will never realise how good it was to get indoors, relieved, very tired and happy to be home safely!
Two days later a district nurse arrived spot on 46 hours after the start of the 5FU infusion to disconnect the pump from me and relieve me of the bottle that had been permenantly strapped to my body. The first round of 12 sessions of chemotherapy had finished!
Side effects are inevitable with chemo and they affect each person slightly differently. The main ones with poxy oxy are nausea, sickness and peripheral neuropathy. P/N affects the nerve endings, mainly in the fingers, hands, toes, feet, tongue, mouth, throat and face. The first sign that anything was happening, was the first time I went to the loo while the chemo was being pumped through my veins on the ward. As I washed my hands I was aware that the cold water I was using felt as if it was stinging my hands, they were tingling and felt as if I was grasping nettles, not very nice. This got worse over the next week and I had to devise ways of getting things out of the fridge and freezer.... you try lifting milk out to make tea with using oven gloves! Going out was a nightmare, remember this was December, right at the start of a very cold winter! My neighbours got used to me looking like an Arctic explorer, as by this time the cold was affecting my face, mouth and throat, making breathing in cold air a nightmare, my lips felt like they were burning, my tongue as if I was chewing broken glass and nettles and my throat would completely close up, making breathing difficult. This also happened if I drank or ate anything cold, so water, squash and milk were drank slightly warm, YUK! Periperal Neuropathy increases with each infusion and the numbness and tingling worsened and eventually started in my toes and feet, which then needed thermal socks, many layers at a time and warm slippers and boots and layers of socks when I ventured out! Towards the end of my treatment the p/n affected the nerves in my spine and I suffered something called Lhermitte's sign which meant that every time I put my chin towards my chest I got a jolt like an electric shock down my spine and legs and ended in my toes, not pleasant and frightened the hell out of me the first time it happened, I was almost relieved when my oncologist confirmed it was associated with dear old poxy oxy!
I was lucky though as although I suffered p/n and a fair amount of tiredness, I never felt sick, due to the anti-emetic used with each dose of chemo, my hair did thin a little, but that never concerned me as it doesn't hurt, I was more upset that I wasn't allowed to dye my hair during the 6 months of chemo and therefore displaying my roots to the world!
After 3 sessions of chemo I had to meet again with my oncologist Dr S for what I assumed to be a chat about side effects and how I was generally coping with chemo, by the way I was having chemo every fortnight! Anyway Dr S did indeed ask me about the side effects, checked my blood counts, which had always kept well within the bounderies required to fight infection (chemo kills the white cells while doing it's job of killing the tumours!) due, I'm convinced by the Life-Mel honey I took throughout my chemo. But that was not the whole reason for him wanting to see me, the CT scan I'd had 7 weeks previously unfortunately showed that the disease had spread, metastasised, to both my liver and lungs, with apparently many small tumours growing in each. This meant that the chemotherapy I was having was no more preventative it was palliative, my cancer was now staged at 4, which meant it was now at an advanced stage. My blood ran cold, what did this mean, I no longer heard what Dr S was saying, I don't think I was thinking beyond is this the end? I had not noticed a nurse come into the room at this time, but Dr S introduced me to my CNS (cancer nurse specialist) an expert nurse in colo-rectal cancer. She took me to the 'quiet room' the one everyone dreads going in, to sit in the easy chair, with the muted lights, cosy cushions, pastel emulsioned walls, flowers and chocolate box pictures on the wall. I was on my own, I'd been going to all my chemo sessions after the first one and blood tests and talks about how I was getting on with chemo on my own, I'm very independant, don't like fuss and have never in my life been treated like a china doll! The nurse asked me if I'd like her to contact my husband, but no, I'd handle this on my own, preferring to tell him at home once I'd got my head around the sudden, different route my cancer journey was now on. I can't remember what the nurse told me, all I was waiting to hear was was this the end, was there still the chance of a cure? I asked her eventually if I was terminal, it was very, very hard to get the word out, but I'd had enough of her pussy footing around the subject. No, she said they would still carry on with the chemo, but now it was a case of keeping the cancer at bay rather than curing me, that tumours would undoubtably pop up again and there was no promise that the chemo I was on would rid me of the tumours I already had. It was a waiting game to see if I would win phase one of the chemo versus tumour lottery. I asked about time scales, another difficult question to get out, she paused and said that she knew people with my diagnosis last 5 years.
............5 years! I will never forget that statement, how could it be 5 years max, I felt well, I was only 57, my son had only recently got married and my daughter was single, I had no grandchildren. Suddenly I was angry, very angry, I'm afraid I took it out on the poor nurse, complaining of delays in treatment, lost appointments etc etc etc. she listened and let me rant, I expect she had heard it before and was expecting it. I didn't cry, I rarely do, sometimes I wish I could, all that pent up emotion needs to come out somehow! I drove home alone, ridiculously calm (probably after the storm) and went home (it was around 6pm) to both Bob and Hazel at home waiting for me to cook dinner! I told them straight away, again one of the most difficult things a mother and wife ever has to do, Hazel again was horribly distressed, angry with a system that had promised a cure. Bob was ominously quiet, and I knew he was trying to deny the situation I had presented him with. The tears came a bit as we all hugged and I tried to console Hazel with the words that I was going to fight it with every bone in my body, I felt well and wasn't going anywhere just yet. Later I had to go through the whole thing again with my son Matthew, more tears, more reassurances.
Another 3 sessions of chemo passed. I had started making cakes, biscuits, brownies and cheese scones for the nurses, doctors and other workers within the unit and patients as a way to pass time between chemo's and a way of thanking the very overworked, caring and diligent staff. I made about 80 for each session, they were all eagerly anticipated and never any left at the end of the day! At this time I had another CT scan to see if the chemo was having any effect. Any cancer patient will tell you the scans between treatments and the ensuing wait is the worst part of the cancer journey as you never know what they will show. So it was with trepidation that I went for my appointment with my oncologist. This time he was smiling, the chemo was working and the tumours in both liver and lungs had shrunk cosiderably, I was half way through treatment and it could continue, it was having the desired effect, it was actually working better than Dr S had dared hope! As you can imagine I was extatic and for the first time in over 6 months I felt on the way back to the car that I was walking on air!
The chemo unit is a very serene place, no radio or TV's allowed so not to distract the nurses from their important and exacting job, patients chat to each other if well enough, as unfortunately there are sometimes some very sick people receiving chemo or needing blood transfusions because of a low blood count, which means that their chemo is suspended until their blood is capable of withstanding the risk of infection again. Some people are very sick whilst on the infusion and sometimes people do collapse. It certainly brings home how serious cancer is, how debilitating chemo is, it affects anyone from any culture, religion or class, it has no bounderies. We all knew how each of us felt, we felt each others pain and knew the path each other were walking.
One day a vicar came to talk to me, we often had 'men and women of the cloth' visit the unit to offer comfort to those who wished to receive it. I think of myself as a Christian, I was brought up to go to church each week until my teens, I was married in church and had both my children christened. But as an adult I never felt the need to go to church to believe in God, to act as a Christian. It is not something to do just for an hour once a week. I think it is enough to have 'Christian' values, to teach them to my children, to be a good citizen, to keep my marriage vows, to help society and be a 'good' person, So although I didn't want to get into deep talks with this vicar about my religion, I was prepared to have a few words with him. One of the questions he asked me was "I expect you must have wondered, why me?" without thinking I replied, "Why not me?" he was taken aback and I had to explain to him that 1 in 3 people get cancer and the number is rising, so the odds of getting cancer especially as you get older are pretty high! Why should I have different odds to the next person, I hadn't taken paticular care of my health over the past 20 years, I didn't exersise, I was morbidly obese and led a sedentary life style. All things I knew in the back of your mind are a recipe for bad health, heart disease and cancer risk, but I'd chosen to do nothing about it, so now my chickens had come home to roost. In fact it was more likely to be 'me' than anyone else. So now you know why this is the title of my blog!
The end of May saw me reach the end of my treatment, I'd managed well on my treatment, apart from the peripheral neuropathy and the tiredness that I had got used to, I still drove myself to and from treatments, appointments, scans and blood tests. I was still doing my voluntary job with the charity Hi Kent servicing and fitting hearing aids at clinics and in peoples homes. I ran the home, cooked, shopped and cleaned and generally tried to keep things as normal as possible for the family.
Again I had to have a scan to see what the final outcome ot the chemotherapy was. Again with trepidation I walked into Dr S's room and was again greeted with a smile and the very welcome statement that "I don't know how you've done it, but all the tumours except for a tiny one on your liver have gone! It's an excellent result. congratulations!" The best news ever! I nervously asked him if I was in remission and was told that at stage 4 it couldn't really be called remission, but for a while I could rest easy and say that the cancer was 'at bay'. He leaned toward me, fixed his eyes on mine for a few seconds and said "Alison, you must understand, this cancer will get you in the end, I don't want you to think that you are cured." I will never forget his words, or forgive him for taking away my moment of euphoria..... I knew I had advanced cancer, I knew the odds were not good, I knew I only had a 7% chance of living beyond 5 or 6 years, but I was happy that this time I'd beaten the tumours, I was smiling properly for the first time in months, only to be brought back to earth again with an almighty crash, so please, any oncologists out there, think how you talk to your patients, we are not stupid and desperately need those 'moments of euphoria!
Wednesday, 11 January 2012
Bowel Cancer - A journey I never wanted to start
My bowel cancer journey started on Saturday June 19th 2010. I think everyone remembers the date of their cancer diagnosis, but for me it was extra significant, it was the day of my mothers death 3 years previously. I was diagnosed with 2 primary tumours in my bowel, one in my rectum and one about as far away as it could be in the ascending colon, after a colonoscopy my gall bladder surgeon had sent me for as I had complained of slight rectal bleeding for some time, "I'm as sure as I can be that it is piles and nothing sinister will be found" were his words and indeed what he put in his letter to my GP. My GP had also assumed it was piles when I had mentioned it, neither of them actually performed a finger examination to confirm their thoughts. I had also been to my GP several times complaining of 'very uncomfortable bloating' and very distended stomach, diarrhea that wouldn't go away and indigestion as well as the very slight rectal bleeding. All as I now know are classic symptoms of bowel cancer. I had of course 'googled' my symptoms and was scared to see that I had the symptoms of bowel cancer, but my GP had never mentioned the possibility and I certainly wasn't going to ask her if it was possible, in my books GP's didn't take kindly to patients self diagnosing.
I had the usual MRI (Magnetic resonance imaging) and CT (computerised (axial) tomography) scans before the MDT (multi-disciplinary team) meeting to discuss me and plan my destiny. Fortunately the scans showed no spread to other organs, just a couple of tiny lesions on my lungs that were probably scars from a chest infection.
I met with my consultant who would perform my operation and decided that as bowel cancer is usually slow growing, I could safely postpone my operation for 6 weeks enabling me to attend my sons wedding at the end of August while I was well enough to enjoy it. My body had other ideas though. The grumbling gall bladder that had started off the diagnosis decided it was taking a back seat no longer and a week before my sons wedding, had me in so much pain I had no alternative but to go to A&E. Pancreatitis was diagnosed, which meant that one of the stones had lodged in one of the ducts from the gall bladder into the pancreas, not good! So I was admitted and was put on painkillers, drip, catheter and a water only diet until the stone dislodged. I spent the time in hospital organising last minute panics about the wedding and panicking myself that I would be unable to attend. My cancer surgeon came to see me, I was scanned, it was decided that after 6 days in hospital I could go home and attend my sons wedding as long as not a drop of fat or alcohol passed my lips between now and my operation in a weeks time! So 18 hours later on August 26th 2010 in the sunshine, after the biggest August storms Kent had seen for years, I watched my son marry his beautiful bride under a gazebo covered in sunflowers and hops. The day was wonderful, I was well, enjoyed every minute and the wonderful chef with 12 hours notice cooked me the most wonderful fat free meals during our 2 day stay at the venue.
Thursday September 2nd 2010 the day of my operation saw me entering the hospital at the crack of dawn as I was on the advanced recovery programme. My operation, a sub-total colectomy with formation of a permanent ileostomy from my small intestine and removal of the offending gall bladder was performed successfully by keyhole surgery and took 6 hours. I spent 2 days in HDU and was then removed to a surgical ward for the rest of my stay in hospital. Unfortunately, when I was told I was able to go onto solid food on day 3 post op, the only guidance I was given was that I could choose anything from the 'light' menu. Having been dieting sensibly and successfully for a year beforehand (for my sons wedding) and having lost 4.5 stone of the 8 stone I wanted to lose, I chose salad........ my first mistake, the salad had a lot of raw onion in it (I like onion!), radishes, tomatoes, cucumber all the things I now know one should avoid straight after bowel surgery! I was very ill for the next 3 days much to the puzzlement and disbelief of all the staff as I'd been making such a good and fast recovery till then, a lot of the nursing staff were ill informed about bowel surgery and diet and the more senior staff had no idea that this is what I'd eaten to cause such a bad reaction. Eventually my strength returned and was up and about again, I had mastered changing my stoma bags and amused the ward with the cacophany of sounds one small stoma could make, especially in the dead of night! I spent the days till my discharge having my hearing aid repair bag smuggled in and went around the ward servicing and repairing all the hearing aids of the pensioners on there, behind the backs of the nurses, and to the delight of all the deafened ladies who could now hear what their consultant was telling them! I was eventually discharged after 9 days and went home to be waited on hand foot and fingernail......................
I had the usual MRI (Magnetic resonance imaging) and CT (computerised (axial) tomography) scans before the MDT (multi-disciplinary team) meeting to discuss me and plan my destiny. Fortunately the scans showed no spread to other organs, just a couple of tiny lesions on my lungs that were probably scars from a chest infection.
I met with my consultant who would perform my operation and decided that as bowel cancer is usually slow growing, I could safely postpone my operation for 6 weeks enabling me to attend my sons wedding at the end of August while I was well enough to enjoy it. My body had other ideas though. The grumbling gall bladder that had started off the diagnosis decided it was taking a back seat no longer and a week before my sons wedding, had me in so much pain I had no alternative but to go to A&E. Pancreatitis was diagnosed, which meant that one of the stones had lodged in one of the ducts from the gall bladder into the pancreas, not good! So I was admitted and was put on painkillers, drip, catheter and a water only diet until the stone dislodged. I spent the time in hospital organising last minute panics about the wedding and panicking myself that I would be unable to attend. My cancer surgeon came to see me, I was scanned, it was decided that after 6 days in hospital I could go home and attend my sons wedding as long as not a drop of fat or alcohol passed my lips between now and my operation in a weeks time! So 18 hours later on August 26th 2010 in the sunshine, after the biggest August storms Kent had seen for years, I watched my son marry his beautiful bride under a gazebo covered in sunflowers and hops. The day was wonderful, I was well, enjoyed every minute and the wonderful chef with 12 hours notice cooked me the most wonderful fat free meals during our 2 day stay at the venue.
Thursday September 2nd 2010 the day of my operation saw me entering the hospital at the crack of dawn as I was on the advanced recovery programme. My operation, a sub-total colectomy with formation of a permanent ileostomy from my small intestine and removal of the offending gall bladder was performed successfully by keyhole surgery and took 6 hours. I spent 2 days in HDU and was then removed to a surgical ward for the rest of my stay in hospital. Unfortunately, when I was told I was able to go onto solid food on day 3 post op, the only guidance I was given was that I could choose anything from the 'light' menu. Having been dieting sensibly and successfully for a year beforehand (for my sons wedding) and having lost 4.5 stone of the 8 stone I wanted to lose, I chose salad........ my first mistake, the salad had a lot of raw onion in it (I like onion!), radishes, tomatoes, cucumber all the things I now know one should avoid straight after bowel surgery! I was very ill for the next 3 days much to the puzzlement and disbelief of all the staff as I'd been making such a good and fast recovery till then, a lot of the nursing staff were ill informed about bowel surgery and diet and the more senior staff had no idea that this is what I'd eaten to cause such a bad reaction. Eventually my strength returned and was up and about again, I had mastered changing my stoma bags and amused the ward with the cacophany of sounds one small stoma could make, especially in the dead of night! I spent the days till my discharge having my hearing aid repair bag smuggled in and went around the ward servicing and repairing all the hearing aids of the pensioners on there, behind the backs of the nurses, and to the delight of all the deafened ladies who could now hear what their consultant was telling them! I was eventually discharged after 9 days and went home to be waited on hand foot and fingernail......................
Subscribe to:
Posts (Atom)