Beating Bowel Cancer’s forum is often described as a lifeline for bowel cancer patients and their families. Christine Balaba explains why.
July 21, 2016 – “When you’re diagnosed with a serious illness people often tell you not to google anything but I really needed support. I went to the internet and found the Beating Bowel Cancer forum and I’m so glad I did.
“Obviously there is a lot of scary stuff out there on the web and it’s important to have a website that you can trust like Beating Bowel Cancer and the forum.
“Everyone who is diagnosed should be sent the link. Your cancer nurse or team should tell you about the forum straight away. It’s so helpful from the very beginning of your journey and all the way through. I am trying to help spread the word.
“I’m based outside London and there aren’t that many support groups where I live, but the forum is almost better than a support group where you see the person.
“It is a very safe space and you can come up with topics that could be difficult to bring up when you’re face to face with somebody.
“You can be really frustrated and really down and it could be in the middle of the night but you know there is always somebody online who may be able to support you and may be able to give back to you because it can be such a lonely place sometimes dealing with something like this.
“Sometimes it’s so much better to communicate with people who understand you but are not necessarily your partner or your mum or your child. It’s often good to speak to somebody else about these things.
“Bowel cancer is also very specific – there are very specific treatments so there are certain answers that I get from the forum that I wouldn’t necessarily find if I googled them. There are ways of dealing with very specific side effects that has helped me a lot. Or what cream is effective against a certain rash given by a certain medication which is a treatment that is only given for bowel cancer.
“I know that people find a lot of support from the forum but I think for me the most important things are the positive moments – the really good moments when you get a good result of something.
“If I tell a friend I don’t know very well ‘oh I’ve just had a scan and the scan shows my liver mets have reduced by half’, they would probably be still quite worried!
“But tell people on the forum that and it’s fantastic news and they understand that and it’s great to celebrate those really, really good moments.
“Recently a woman posted a picture of herself on holiday with a stoma – she’s just sunning herself on the beach but she’s exposing the external stoma bag which is fantastic and I think something like is so meaningful.
“It’s such a celebration of what she’s been going through and diversity and sharing these achievements that you’re able to go on holidays despite all the things you’ve been dealing with, that’s just the greatest thing.
“I believe there is the wrong perception that using social media in relation to your own cancer diagnosis can be detrimental and scary; and I have been discouraged before on many occasions from using “cancer forums”.
“When accessing Beating Bowel Cancer, all I found was a safe, supportive, informative and helpful space. It’s a space that offers understanding and comfort, when it’s needed the most. Without it I would have much less access to knowledge and understanding and I would have much less support.
“I like to be informed as much as possible. Through the forum I learn a lot from other peoples’ experiences and treatment plans.
“It helps me to know what questions to ask my doctors about future treatments and other things. It helps me to understand what to expect in future. Very importantly hearing of peoples’ success stories gives lots of hope, which is as important as medicine and is so short in supply when being diagnosed with stage 4.”
Visit the forum here http://community.beatingbowelcancer.org/forum
Beating Bowel Cancer
7 High Street
Or call your chosen department:
Contact our nurses: 020 8973 0011
Press Office: 020 8614 3855
Out of hours Press Office: 07553 121454
Events Team: 020 8973 0003
Community Fundraising Team: 020 8614 3853