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Colorectal Cancer

Bowel cancer support groups and organisations

Local groups and national or regional organisations offering information and support can be of great help to people with cancer, as well as to their friends and families. However, finding the right source of information and support can sometimes be difficult.

Relatively few of the people we talked to had contacted any of the national organisations offering support for bowel (colorectal) cancer patients. Some said that this was because they did not know of the organisations or where to find them. A few people had made contact and received information which they found helpful. One woman had been assisted in her campaign for the right to receive a particular chemotherapy drug, and several had become volunteers after receiving assistance themselves. Others couldn't remember their dealings with the organisation they contacted. Two people felt they were given inadequate advice which had added to their distress at the time.

Several people belonged to or had been helped by national organisations for people with colostomies or ileostomies and rated them very highly. They emphasised the usefulness of meeting other people with stomas who could pass on advice and reassurance.

 

Feels that sharing experiences of stomas is invaluable to new stoma patients.

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Age at interview: 87
Sex: Male
Age at diagnosis: 62
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I don't know whether I said this to you before but over the hundreds of people that I saw in 22 or 23 years whatever it was, none of them was ever less than eternally grateful.

They were so pleased that somebody could take the trouble to come along and explain this to them because it was a completely closed book to them they didn't know and the hospital staff don't know and the stoma care nurses don't really know.

They've got of bit of learning from books but it ain't nothing like living with it.

And when you live with one you learn that it can be quite capricious at times and it can do all sorts of odd things that you can't expect or that you don't expect and really and truthfully the best thing is to find somebody who's got one.

Now, I think that the pre-operation talk is the most important of all. This is the time when, you know, when you haven't had it yet and every odd thought can go through your mind about how terrible it's going to be, what a terrible operation it is, what am I going to look like afterwards, I shall be a scarecrow, I shall be this, how can I manage it, who's going to tell me about it, what happens?

Stephen created his own website called Stephen’s Story to talk about his cancer experiences and spread his motivation and positivity for living life to the full.
 

Stephen created his own website about his cancer journey. He made a bucket list of all the things he would like to do and one of which was to raise a million pounds for the Teenage Cancer Trust.

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Age at interview: 19
Sex: Male
Age at diagnosis: 15
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Had you joined the Teenage Cancer Trust at that point?

No I haven’t really joined them if that makes sense. I’m an unofficial kind of affiliate, I’m just a fund raiser. Probably should mention as well when I was, when I was diagnosed in my pelvis, when it was said, when they were discussing amputation but then they said “Oh it’s in the pelvis,” after and they said it was incurable, unfortunately so yeah and then they said this Christmas period and then and I started back studies in January and then I was obviously thinking diagnosed incurable, what am I studying for? I wanted to study medicine, I was at, I’d just had interviews at Cambridge and Leicester but medicine’s a five, six year course. If I’m incurable it’s not going to be the best use of my time. So that’s when, on the 13th January 2013 I made a Facebook page called Stephen’s Story, which included a bucket list of things I was going to do. It included fund raising and it included all kinds of weird and wonderful things that have kept me busy since.

So you reacted to this awful news by being very positive and making a list of what, all the things that you’d like to do.

Yeah. As I say yeah since starting Stephen’s Story I’ve ticked off 35 of these bucket list items, so that includes crowd surfing in a rubber dingy, it includes drumming in front of a huge crowd, I did that in front of ninety thousand people at Wembley, included doing some public speaking, I did that at Downing Street and the O2 arena in front of 4,000 people. It includes getting a tattoo, of which I’ve got two. It includes skydiving. It includes hugging an animal bigger than me. I hugged an elephant.

An elephant?

Yeah. Awesome. And it just included all these weird and wonderful things that have just kept me busy throughout the year. I mean as well number one on the list was to raise £10,000 for Teenage Cancer Trust, and in just over a year now I’ve raised £570,000 for ‘em.

Amazing. Half a million pounds.

Yeah just like that so my new target is now a million. So fingers crossed we get there.

Yeah so I, yeah I’ve had the bucket list which I’ve had a great time with, and I’ve done loads of fun things off the bucket list as well. And yeah I am quite happy, whether I tick another off or not, the main thing I’m concentrating on is the fund raising, so as I say the new target is a million, so I’m going to be pushing hard for that. As well I’ve been doing kind of motivational speaking to schools, to businesses, to health professionals, to all kinds of kind of settings to share my experiences with, with a view to helping and just got lots of exciting projects on at the moment. I’ve got a documentary out soon, I’ve recently released my own new website, Stephensstory.co.uk, recently released an e-book, hopefully I’m going to write a bigger book in the future and yeah just loads going on.
 

Stephen wrote about his cancer journey to spread as much positivity as possible. He found the response to his website humbling and helpful.

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Age at interview: 19
Sex: Male
Age at diagnosis: 15
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How much support have you gained from outside, through the websites, through Facebook or Twitter or your blog?

Yeah they’re, since starting Stephen’s Story the support I’ve had has just been absolutely huge, it’s been from inter, it’s been international, for example I’ve had messages from other countries just saying, “Wow, really respect what you’re doing, blah blah, wish you all the best.” Or people sharing their own stories of someone who’s had cancer or anyone or etcetera and it’s just been as I say really helpful, ‘cos it’s just really humbling you know that, that people do actually care but without something like Stephen’s Story all around me and it’s huge reach I wouldn’t be able to notice that. But people do genuinely care and yeah want to help out.

Oh that’s good, they can see, so you look at, do you write something most days?

Yeah, no I try and update as much as I can, so there’s normally an update or two a day. Whether it’s about what I’ve done in the day, whether it’s about an upcoming event, whether it’s just a motivational just thought, or whether it’s just a silly anecdote to try and put as much out there as I can and it’s all just as positive as can be, and again it’s a, the page is just to spread as much positivity as possible.

Several people had attended or planned to attend a local cancer support group but were put off because they had little in common with the other people there. Sometimes this was because of a difference of age or social background. Often it was because people were seeking support for problems specific to bowel (colorectal) cancer patients. Several people voiced an urgent need for such groups to be established and a few had considered setting one up themselves. One woman explains why she wished a support group had been available in her area.

 

Wishes she could attend a support group specifically for colorectal cancer patients.

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Age at interview: 56
Sex: Female
Age at diagnosis: 53
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I was given a few booklets by the stoma nurses about what would happen inside and the diet and so on but apart from that, I feel at that point I could have done with a lot more information and perhaps support group.

I was desperate to talk to someone else who had similar illness. I kept saying "I can't be the only person who has had this," you know I needed to talk to someone else.

I'm still very desperate to be part of a support group which the Colon Cancer Concern is now in the process of trying to set up a group. I've been to several sort of groups where there it's for people with cancer or who have had cancer but I feel that it was not colon cancer. And each part of the body is of course different. Everything is sort of difficult, painful, hard but then what I would like is to talk to other people about what they are going through after the operation.

What they have taken that's helping them with their bowel movement and to be able to exchange ideas really and I think that is very important. I would like to see more, like to see support groups for bowel cancer set up in different areas so that people can go there and get the information or as a group they could then seek some sort of advice or information.
 

A number of people had become regular members of a local support group and found it very beneficial. A woman who regularly attends a cancer support group in East London said it gave her a sense of community as well as support and provided opportunities to socialise and enjoy planned activities. Four people who attend a bowel cancer support group in the West Midlands, emphasised the range of benefits it offered including a well-stocked library, regular visits from colorectal nurse specialists, recreational outings and a warm and cheerful social atmosphere. Two people had benefited from a counselling service available at a North London cancer support facility.

 

Describes the support group she attends in East London.

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Age at interview: 65
Sex: Female
Age at diagnosis: 59
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And what's it like at the support group, what, what do you do there?

Well er we don't talk, like when you have the one to one counselling obviously you talk about it but then once you actually go into the group, I mean it's something you don't really want to talk about and I don't know we just do all silly things, have a laugh and talk about general things. We have days outings and do a bit of fundraising and things like that.

And has that helped?

Yeah, yeah it has helped a lot.

What's it given you going to CYANA?

Er well it's something to, it's only once a week, Wednesday, but obviously I've made some nice friends over there. And like they've not all got cancer, I mean I would say there's more without cancer over there that's lost like partners and wives and husbands like their carers as they're classed as. I'd say there's more carers than what there is actual patients but it's just er well a nice feeling to go there like.

Does it give you a sort of, excuse me, a sense of community?

Yeah I think like you feel as though obviously you're not alone. I suppose that's why they named it CYANA, Cancer - You Are Not Alone

What's the next outing with the group then?

I think it's in August.

What's it going to be?

I think it's just a boat trip only like

On the River Thames?

Yeah to Waltham Abbey, I think it leaves from Bow up to Waltham Abbey.

Are you going to go on that?

Hopefully yeah. We went to see er, what was it, 'The King and I'.  Was it last month or the month before, I think it might've been May we went to see that, that was a nice afternoon out. But you see where they've been so busy over there and that, they can't always get a trip once a month.

Right.

I mean I've already booked to go, it's not till November but it's what they, I don't know if you've heard of Turkey and Tinsel?

Oh yes.

Well we're going on one of them like with a few of them from over there, Monday to Friday. I mean I do try to go on all what they get up because as I say I don't feel out of place with any of them but well I mean I don't really with my family but I dunno, I still get wary.

Details of support organisations for people with bowel (colorectal) cancer appear in the 'Resources' section of this website.

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Last reviewed August 2016.

Last updated August 2016.

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