Manchester CLL support group meeting January 12th - 2.00pm - 3.30pm.

[HAIRBEAR_UK]

Are you looking for a local CLL support group in Manchester?

Come along to the Manchester CLL Support Group for a coffee and a chat

WHERE The Christie Education Centre (Dept 17), Wilmslow Road, Manchester, M20 4BX

2016 DATES

12th January - 2.00pm - 3.30pm

22nd March – 2.00pm – 3.30pm

28th July – 1.00pm – 3.00pm

29th September – 2.00pm – 3.30pm

If you would like to come along or would like more information contact the CARE

Team on 08088 010 444 or email [e-mail]

[mister_Ian_NE]

Is there a similar local CLL support group in the North-East of England please?

[HAIRBEAR_UK Founder Admin in reply to mister_Ian_NE]

Hi Ian

At this moment I don;t think there are any local CLL specific support groups in the North East or in many other areas. But if CLL patients and carers were to attend other Leukaemuia Care or Lymphoma Association local support groups they may connect with others with CLL or similar conditions. CLL patients connected here in the community could arrange to meet up at one?

Leukaemia Care support groups leukaemiacare.org.uk/suppor...

Lymphoma Association support groups lymphomas.org.uk/how-we-can...

I did a quick search and found a Lymphoma Association Teeside support group ww.lymphomas.org.uk/information-and-support/lymphoma-support-groups/teesside-lymphoma-association-support-group, where in the North east are you?

For info CLLSA will be holding a regional meeting in the Midalands at Nottingham March 10th, (it's not in the North but may be worth considering travelling to) details will be available from cllsupport.org.uk/ in the New Year.

Will keep you posted of any other local CLL support groups as they develop

Happy New Year

Nick

[mister_Ian_NE in reply to HAIRBEAR_UK]

Hi Nick,

Thanks for your response.

I actually live on Teesside but I don't know how CLL and Lymphoma relate to each other so am unsure whether I should contact the site you quoted.

I'm really quite ignorant about CLL as a) my hae quite franklymatology consultant left my hospital and b) my watch and wait results seem quite low and stable compared to those I've read about on here. All the drugs talk is beyond me quite frankly.

I see myself as being quite "fortunate" compared to other members of this group and I feel embarassed in what I have admitted to above.

Happy New Year to you too

Ian

[mister_Ian_NE in reply to mister_Ian_NE]

PS - please excuse the muck up I made above!! A pity we can't edit out errors after a reply post has been sent

[HAIRBEAR_UK Founder Admin in reply to mister_Ian_NE]

Hi Ian

I think many will relate with you and a significant proportion of CLL patients in this on-line group are untreated and on watch and wait. I myself am untreated after five/six years and also feel quite fortunate to not have to undergo that yet

It takes a little while to find your feet and get your head around CLL, treatments are improving & changing and in time what we may be treated with now may be different when we need treatments. So no bad thing that conversations and research posts are beyond you, they may not be relevant tomorrow?

Start your learning with good overview booklets about CLL and watch & wait for starters to get a good foundation from there you'll find out what you want to know more about.

UK booklets:

Leukaemia Care step by step on CLL leukaemiacare.org.uk/resour... step by step on watch & wait leukaemiacare.org.uk/resour... & Bloodwise CLL information booklet bloodwise.org.uk/sites/defa...

The Camaraderie and combined knowledge in groups like this community and meeting others in person can help, they do for me, I can relate to feelings of guilt at times when so many friends are unwell at the moment. If I am honest diagnosis also made me unwell it was spending time with others and understanding CLL in me that eventually helped. Horses for courses, CLL is a type of non hodgkins lymphoma there is no guarantee you will meet others with CLL in a general lymphoma group but we all share many of the same challenges, especially dealing with watch & wait

Best wishes

Nick

CLL Support Association website cllsupport.org.uk/

[HAIRBEAR_UK Founder Admin in reply to HAIRBEAR_UK]

PS I forgot to mention a good learning tool are some of the webcasts on our website of talks from our meetings given by CLL specialists, especially useful when you cannot reach a meeting :

CLL overview by Dr George Follows cllsupport.org.uk/cll-overview

The role of the Nurse Specialist by Gwyn Stafford cllsupport.org.uk/cll-sll/r...

[HAIRBEAR_UK Founder Admin]

last minute reminder to those in the Manchester Area.

There is a CLL support group meeting between 2 and 3.30 this coming Tuesday afternoon 12th Jan at The Christie Education Centre (Dept 17), Wilmslow Road, Manchester, M20 4BX.

A couple of CLLSA trustees will be joining the group to share support and information.

If you are in the area and fancy a coffee and connecting for an hour or so with others living with CLL, contact the CARE Team on 08088 010 444 or email [e-mail] to let them know you may drop in

Best wishes

Nick