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

 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.



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.

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......................