Has anyone else been diagnosed with Bowel Cancer? I'm a young(ish!) Mum in Bristol looking to connect

[jammaker09]

I'd love to hear from people in a similar position.

I attended the Penny Brohn Living Well course, which I found really helpful but as our group was so small there was no one on the course in a similar situation or with a similar outlook. I would love to be able to share with people who are going through the same.

Thanks

[jeanjames]

hello

Yes I was diagnosed with bowl cancer a year ago this May.....Scary stuff. I have had a good deal of my bowel removed...what is left- about 12/14 inches....joined up... no bag. No chemo at the moment I'm clear ...I am not supposed to eat fibre,but i do. i grow my own vegetables. Sometimes I can feel discomfort,but I manage to cope. lease tell me about your condition. I have found it very healing to talk about, share 'our stuff'

I look forward to hearing from you.

Take care try to be positive

Love

Jean

[jammaker09 in reply to jeanjames]

Thanks Jean.

Like you I aim to eat healthily and tis doesn't include the low fibre diet the stoma nurses recommend. I prefer to eat what I know is giving my body the best possible nutrients.

I was diaognosed with stage 3c bowel cancer therefore chemo was necessary as it has spread to my lymph nodes. I'm half way through this set of treatment and praying for clear scans on the other side. Meantime I do what I can do every day to help me beat this disease.

Stay well

Della

x

[LYP542]

Hi there

I was diagnosed with secondary bowel cancer in February 2014. It has spread to my lymph nodes and my neck - an unusual presentation apparently as it usually spreads to liver and lungs and I haven't managed to find anyone with a similar pattern of spread. I've had 2 rounds of palliative IV and oral chemo then decided not to have any further treatment as I want to enjoy whatever time I might have left without feeling dreadful. I don't really have any major symptoms at the moment apart from some aches and pains which might well be musculoskeletal although there is always the concern that it's spread to my bones. When I first got my diagnosis I joined various cancer forums as I was desperate to communicate with people in a similar position. However once I had decided not to continue with treatment I stopped visiting those websites as I felt so sorry for all those brave people putting themselves through all that horrible treatment, especially those with a terminal diagnosis like me.

Since stopping treatment, and coincidentally taking a slightly earlier retirement than I had planned, I have been feeling pretty good. I have come to terms with my prognosis and with the stress of holding down a full-time job now removed, I am making the most of my time and enjoying being alive.

Every cancer patient at some point has to make some very difficult decisions about their individual treatment. My experience with the medics has not always been great insomuch as they are very good at telling you what they think you should do, but not always so supportive if you decide not to follow their advice.

I live in Bristol on the Bath side of town and would be keen to meet up with fellow cancer patients for coffee/support. Does anyone know if such a group already exists or would anyone be interested in forming one? I'm thinking more of a self support group rather than one organised through Penny Brohn, Macmillan or the Oncology Centre.

Anyway Jammaker, I see you are from Bristol so if you would like to meet up for a chat or contact me, my email is [e-mail] I'd be happy to answer any questions if I can or just 'share stuff' if you'd like to.

I don't frequent these health sites much anymore but I am happy to be contacted by anyone who lives in this area looking for some local support.

[jammaker09 in reply to LYP542]

Hi Lyn,

Thanks for sharing your story.

Getting support isn't as easy as it should be. I've looked long and hard for a bowel cancer group in the south west, but there is nothing other than internet forums, which of course can be very useful, but if you want to meet face to face difficult.

I suggested Penny Brohn as its really the only local option for an integrated cancer care approach. They believe in mind, soul, body and diet, doing everything possible to live well. If you haven't been, I'd really recommend it as its a good place to meet people.

I would certainly join a local group if there were one. I already know another lady with bowel cancer in Bristol, so that makes three of us! I will speak to Macmillan though and see if they have any suggestions.

All the best

Della

x

[annagoanna]

Hi,

Sorry I can't personally assist (I had a weird rare cancer) however I'm sure this forum will find some fabulous people with bowel cancer. Another source (I've friends who've found them really helpful) is Beating Bowel Cancer. They have an amazing online support group but also a community on twitter and Facebook. They also host an annual Patient Day (not sure when) which I've been to as a supporter and know these Days are a wonderful way for people to get together. x

[jammaker09 in reply to annagoanna]

Thanks Annagoanna, (good user name!)

I'll have a looksee

x

[jeanjames]

Hello

I will be contacting you via your e-mail address

look forward to communicating with you

Warm wishes

Jean

[Whippit]

Hi all, I'm just dropping into this thread as I have experience of setting up a support group - though for another type of cancer.

Macmillan are really helpful. They can give you a grant up to £3k to set up a support group and will add details of the group to their website and information database. Another really helpful organisation I've been involved with is Beating Bowel Cancer. I live in Cardiff and they've been active here in Wales lobbying for fairer access to drugs. Their website is beatingbowelcancer.org, and they have an online patient forum there where you could advertise your new group and I'm sure they'd pass on details of your group to anyone who enquires.

We started our group in March 2013 with just 3 founder members who decided to meet up for coffee on a regular day of the month. We chose the last Wednesday of the month as it would be easy to remember. The grant from Macmillan will pay for a printer so you can print out flyers and ask the specialist nurses to hand out in your local cancer centres. The most challenging thing we've found is actually finding a suitable venue as we don't have a Maggies or anything like that here. To date we've been meeting in a bar of a small hotel but they will be closing at Christmas so we're on the lookout for another place which is inexpensive and with no risk of being overheard by other people using the venue. That's a bit of an ongoing challenge.

Macmillan also provide training for people setting up support groups and sample documentation. We haven't used this facility yet but intend to do so.

Good luck meeting up with other people in the same shoes. xx Annie