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 They have produced an enourmous amount of literature about the disease in booklet and leaflet form 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

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 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

 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.

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