NEWSLETTER September 07
Hi everyone, looking forward to seeing old and new members after the summer break.
Just a few reminders: MEETINGS
Change of venue to: Porth County Community School, Cemetery Road, Porth, Rhondda.
Look out for the RBF signs.
Change of dates: to second Monday of the Month
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Monday, 10th September 2007: Welcome back,
Programme update & "The Journey"
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Monday, 8th October : The Expert Patient Programme
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Monday, 12th November: Crystal therapy
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Monday, 10th December: Xmas Do
Change of time & format of meetings: : 6:30pm for a 7pm start.
Refreshments will be served after the meeting .
NEWS ROUND-UP
Sad Loss: Unfortunately one of our Trustees, Donna Phillips, died in April and she will be sadly missed for her dedication, sense of humour and positive attitude. Tributes from Donna's family will be used to fund our community cancer conference (see later).
New Trustee: We are pleased to announce that Anne Wardill has volunteered her services as a trustee of RBF. If anyone else is interested please see Diane about what it entails.
Programme: What a busy year so far!
We have made lots of friends and extended our mutual support over a cup of tea. We have experienced relaxation techniques, Indian Head Massage, Ear Acupuncture, Alexander technique, Endorphin effect workshop, a visit to Sandville self help centre in Porthcawl, a visit to Cookie's Cabin in Fontegary and a lovely meal at the Fontegary Arms. All meetings have been well attended with lots of good feedback.
Community Events attended include:
Clydach Vale Fun Day; Porth Carnival; Blaencwm Festival (in memory of Donna); Tonyrefail Healthy living Day; Jayne Sullivan's singing for screening event at the Welsh Assembly Senedd,
Patient Forums etc.
We have been represented at the S.E. Wales Cancer Network in Cardiff, the Patient Forum of Pontypridd and Rhondda Hospital Trust and the Local Health Board.
Future Events
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Trealaw Community First Fun Day, Saturday 15th September. Volunteers wanted for stall.
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"The Journey" intensive, weekend transformational event 6th-7th October. Names being taken.
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RBF Community Cancer Conference, Monday 29th October, 2007, 10-3pm buffet provided.
Names being taken.
Community Cancer Conference: Why have a cancer conference? What's it all about? Who is it for?
RBF is inviting the community to help them inform the Health Service providers of the needs of people affected by cancer. Having your say is the best way of letting the Authorities know how we want cancer services to change.
How you can get involved
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Come along to our conference on 29th October, contact Rhondda Breast friends on: 01443 683220.
OR
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Tell us what three things related to cancer services and treatment you would like to see change in the future. Tell us about one or more areas of good practice where cancer services are working well.
Send to Diane Raybould , 15 Bronheulwen, Porth, Rhondda, CF39 0BJ/ e.mail: di.bri@hotmail.co.uk
A Family history service has been set up with funding from Blackpool Primary Care trust. Women in Blackpool will now benefit from a local clinic dedicated to families at high risk of developing breast cancer.
Action
Do you think we need a family history service in Rhondda? Members of our group and members of the public have approached me with their very real fears about their children or themselves, with double mastectomies considered as a preventative measure. I'm sure a service like this could help with the anxiety and fear around this situation. Please let me know your opinion so that I can feed it back to the decision makers.
Specialist Breast Cancer Nurses Breast cancer patients regularly praise the specialist nurses for the care and emotional and psychological support they provide during treatment. However, some concerns have been raised that increased workload due to additional duties, staff shortages and redeployment to other areas (e.g. general wards) was preventing them from providing the quality of care they would like.
Action
Is this happening here? Does anyone have any knowledge / experience of this? If so, please let us know. Tell us your experience of breast care nurses, your thoughts on the role of breast care nurses and what you think the service would be like without them.
Breast Cancer Patients' experience of follow up care.
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RBF members gave a big thumbs up for the excellent new leaflet available from Velindre on follow up care. RBF did its own survey of members:
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No written information had been provided to any of the members although they had been told if there was any problems to contact their specialist nurse / consultant or GP.
New Leaflets from the Penny Brohn Cancer Care Centre (previously Bristol Cancer Help Centre)
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Food for Support: dietary guidance for people with cancer
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Complementary Cancer Care supporting you.
Library Service:
Thanks to Ellie for her suggestion. Judith has started compiling a list of books and booklets available for loan. If you have any relevant books you would like to borrow, recommend or donate, please see Judith.
Future Programme
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We hope to start a Pilates class if numbers permit.
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If anyone has a special interest or would like to access training, let Diane know.
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Further updates to be provided at the next meeting.
RBF LOOK FORWARD TO SEEING YOU ALL ON MONDAY, 10th September 6:30
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