Topic: UK support group?

Hi all,

I have been looking around for a carer’s support group down here in Oxford, UK, but I am struggling to find anything that is outside of working hours or specific to CC (although this is unsurprising!). I’m a psychologist by trade and I know how important it is to have support from others who are going through similar experiences, hence joining this group. I was wondering whether anyone has every organised a meet-up in the UK at any point or even a Facebook group? I see that a few of our US members have met up and have found this really helpful. Anyway, I feel that further developing a good support network in the UK could be really good and I wondered what our UK members think about this? Maybe there is already a group that meet-up and I don't know about it? smile

Jules

Re: UK support group?

Jules...have you checked the AMMF website?  http://www.ammf.org.uk/
It is a great organization and provides numerous connections with other Cholangiocarcinoma patients and caregivers.  They also have an active Facebook site.  Good luck and I hope for many other UK members to chime in and possibly help you establish a face to face support group.  I believe a good way to start is with the major cancer center focusing on this disease.  Helen has noted those on her website.
In the US only Emory Medical Center,  Atlanta, had a support group initiated by our Mark Stevens.  I don't know the current status of this group.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: UK support group?

Hi Jules, some years ago I tried to start a Support Group here through the Phoenix Mayo Clinic. It is just about a non issue as there are so few CCer's. The only thing they said was to join an existing Cancer group. Unfortunately other Cancers would not answer our cause. So, instead, when a new Member appears on our Board I try to meet up with them. It's like when I started up with my new ONC a few weeks ago I told her about our site and she said, "Oh I have 1 CC patient, she is 30 and has a baby".  Who ever said we wanted to be so unique?

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: UK support group?

Hi Jules,

I don't know of any groups - but  I'm pretty new to CC as I joined in December when my sister became ill so there may well be a group or two hidden away.   http://www.ammf.org.uk/  would be the place to start I guess as Helen who runs the charity might is highly likely to know.

Gavin is a bit of a guru too on the UK front and he might have a bit more information on any UK based groups.  I'm sure he'll be along soon.

I'd be all up for a group but being in Scotland would have logistical challenges!

Clare

In the stars now . . . .

Re: UK support group?

Hi Jules,

Support groups are a great idea and many people would get so much out of them, especially in face to face settings. I'd be up for a UK meeting sometime if we could all do one, but I guess that locations etc would be a bit of a hinderance to us since we are so spread throughout the UK.

Maggies run support groups and I know that they have a centre in Oxford. Here is a link to their Oxford centre in case you haven't heard of them -

http://www.maggiescentres.org/oxford/introduction.html

Timetable for the Oxford groups -

http://www.maggiescentres.org/oxford/timetable.html

I know that in the Dundee centre they run a GI support group but they don't seem to do one as of yet in Oxford. Perhaps you could see if they plan on starting one, or even suggest it. I've had some experiences with Maggies and they do great work there for patients, carers, family members etc.

As to specific CC support groups, I know that Aintree launched one in June of this year and Helen went to speak to it at their opening. Here is a link -

http://www.ammf.org.uk/2013/07/02/disco … -attitude/

Not too sure about any other specific CC face to face groups but I'll see what I can find out and get back to you. And of course, you have all of us here as well!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: UK support group?

In case anyone is interested in establishing a CC support group there is a great webinar that Mark made for us all a while ago. Well worth watching and it can be found here -

http://www.cholangiocarcinoma.org/media.htm

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: UK support group?

Hi all,

Thanks so much for all of your replies. I haven't had time to properly look in to the links that you've sent yet as we're rushing around from appointment to appointment at the moment - i'm sure you know how it is! It's hard to have to go to work when all of this is going on. Looking after mum's health seems to be a full-time job in itself and it is definitely my priority at the moment. I will have a good look at the links you sent, later on today.

Re locations, yes, we are spread out a bit, although my folks actually live up in Northumberland and we can practically see Scotland from our back garden, so not that far away from Gavin and Clare when i'm back up home! smile

Jules

Re: UK support group?

Hi Jules,

Yep I sure know what that rushing around is like between appointments, we can all relate to that! And for sure, your mums health is definitely the priority right now for you. I hope that you are able to take some time for yourself as well though as your health is important also.

I had a good look around and couldn't find any other purely CC related face to face support groups unfortunately. I also got in touch with Helen from AMMF and she didn't know of any others in the UK outside of the Aintree group. She said she would let me know if she heard of any that would be of interest to all of us and if I hear more I'll post the details here.

Next time you are back home then have a look out of your garden at your folks house and you'll see Clare and I waving at you! A UK meet up would be a great thing someday if we could sort one out.

Best wishes to you and your mum,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: UK support group?

Hi Jules

I'm happy to join any support group in the uk ... the more the merrier.

Sandie

.... because I can ....

Re: UK support group?

Sandie....are you back in the UK?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: UK support group?

The more the merrier indeed Sandie! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: UK support group?

Marion ... I'm now permanently in the UK and seeing a prof of onc tomorrow in Manchester (I'm praying for good news).

.... because I can ....

Re: UK support group?

Sandie, praying for a positive meeting tomorrow!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: UK support group?

Sandie....we are right with you; can you feel it?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: UK support group?

Hi Sandie, you move around, girl. I have everything crossed for tomorrow and hope you love your new ONC! Please let us know what happens.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: UK support group?

Good luck Sandie.

Clare

In the stars now . . . .

Re: UK support group?

Fingers crossed here for some good news for you too Sandie!

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: UK support group?

Thank you special friends for your hugs, support and love, soooo much appreciated.   Scans and tests to follow, seeing my new super amazing prof again on the 15th October when decisions will be made ... or not ... hopefully lots of prayers and love will shrink tumours into insignificance.   Miracles do happen ... I know they can, I'm still here so ... BECAUSE I CAN.   Super positive, still giggling and still having loveable blonde moments xxxx

.... because I can ....

Re: UK support group?

Dear Sandie, your fabulous cheering section is already in place and ready to wail! You bet Miracles happen and I have seen some here! Wishing you the very best and can't wait to hear about your meeting in October. Have all the moments you want be they blonde, red or brown. Heck, I will throw myself in there too,,,,Silver.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.