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Beating Bowel Cancer Community

General Discussion

Pea

Looking for a Support Group

I wonder if anyone knows of a support group in my area of South Bucks? I would so like to break this feeling of isolation which seems to have hit me 2 years into this bizarre adventure. I am having a break from my new maintenance chemo regime following my ileostomy reversal last Oct as I’ve been coping with intense discomfort, they think caused by the chemo. It is getting better slowly but I also suffer severe small fibre neuropathy. It’s so draining.
I have had HIPEC, removal of Appendix (primary), spleen, full hysterectomy, 2 parts of my bowel removed and peritoneal lining. 28 Chemo treatments so far. Yes , I’m still standing! Medical team have done so much to get me through this but just now, the constant pain of neuropathy and post reversal pain-in-the-@*#& has got the better of me.
I would really like to find a support group in my area made up of fellow brave warriors. Perhaps I need to start one? Sending the good stuff out there....

Tiffany

Hi @Pea. After a quick look online I've come across Butterfly House which looks like it may provide some of the support services you are looking for.
www.sbh.org.uk

Otherwise have you tried Macmillan?

Best of luck. Tiffany :x::x:

Pea

Hi Tiffany. Thank you, spoke to my local Macmillan drop in Centre today and I know of the Butterfly House so may go back to them.
I feel my wonderful partner, who is a ‘fixer’ by nature feels he can’t fix me, so struggles when I am low. My husband died 10yrs ago and our two fabulous children need to lead lives of their own. They’ve had more than their fair share of the tough stuff. I have no other family within 500 miles! Crazy. I find it difficult to show my friends what I’m feeling as it is so far away from the person that they knew. I will pick up.

chris61

Hi @Pea . Welcome to the forum. Like you, I am in S Bucks and have so far found little by way of bowel cancer support groups, other than this great group of people. I have raised this subject recently with Macmillan at the Cancer Care Centre at Stoke Mandeville with a view to getting something organised and had a reply from one of their facilitators who is investigating a future Bowel Cancer Health and Wellbeing event and (hopefully) a support group. She is away at the moment and I hope to hear more when she is back. I had suggested to them that they may want to consider forging links with the Bowel Cancer charities to establish some kind of support group but whether that will happen remains to be seen.

I had not thought about Butterfly House @Tiffany which is just down the road and may be worth investigating. Will put it on my list!

HH79

Hi there @Pea! Lovely to hear from you. I’m in Tring not too far and a few of us met up Hemel way recently. @DianeS and I were talking about meeting for cake in Wendover if you fancy or we could come to you as I see you’re not driving? Is Chalfont centre walk able for you and meet up there one time? Lots love :x::x:

Pea

Thank you both so much for your rely. @chris61, fantastic that you thought to flag this up with Stoke Mandaville. Do let me know if anything transpires. Ideally I would love to meet others closer to home as, just at the moment, it’s not so easy for me to get through public transport. So boring!
@HH79, I can easily get a cab to Chalfont St Peter, St Giles, Amersham or Gerrards Cross. I would love to join you for cake whenever it’s convenient! Would Amersham be possible for you? Just throw some dates at me and we can take it from there. Really grateful. Pxx

DianeS

Hi @Pea Welcome to our forum, and so pleased you have found us. Support is very difficult in our area. I have been travelling to Cherry Lodge in Barnet for various therapies to help me move on after chemo. I sometimes find being in this ‘wait and see’ period makes me very anxious, and although it’s great being tested every 6 weeks it has its drawbacks. Iam in Little Kingshill and would be more than happy to drive over to you and go for a coffee, whenever you are free. And I’m sure we can arrange something with @HH79 . Love D :x::x::x::x:

HH79

Hi @Pea @DianeS let’s do Amersham soon! Just on hols now but will get in touch when back & fix a cake date, lovely :x: :x:

Gary not Gavin

Think thats what we all need some local support groups for bowl cancer and cancer in general. :x::x:

chris61

Hi @Pea , @DianeS , @HH79 , @Tiffany.
I have now heard something back from Stoke Mandeville. The Macmillan Cancer and Information Support Facilitator there has passed my interest on to the Colorectal Clinical Nurse Specialist, who 'was really pleased to hear about your interest in starting a local support group'.

So I don't know if she will now contact me, or if I will need to contact her. I suspect the latter (!!). I have her e-mail contact details so will keep up the pressure to see what happens - you usually don't get anywhere unless you persist! As for Butterfly House, I have been away so have not been able to make any progress there. Still, I will let you know if anything transpires....... :x::x: