Our ladies were “in the pink” to support breast cancer awareness and we shared Ellaine’s specially decorated RBF cake. It was a “feel good” meeting and Shirley, who was unable to attend, sent us her meditations, healing thoughts and inspirational proverbs to add to our “little book of inspiration and laughter.” We all added to the sayings with our own recollections but Carol got the biggest laugh with the one she had remembered from childhood….I won’t print!

Straight from the meeting we went to Bryn Ivor Sheltered accommodation where the warden, volunteers and residents, together with RCT homes, had planned a pink day to raise funds for us. We shared a fab meal followed by a raffle and bingo. Many thanks to everyone who helped make it such a success.  

We had a brilliant meeting. After discussing why people join a support group we decided it was for information and peer support but there was no point unless your spirits were raised and you felt better when you left. So we set about our “Bag of Tricks,” which was to be a list of suggestions people could choose from for comfort in times of trauma or crisis or when negative people were doing their best to rain on your parade

Ideas came quickly: A hug, a smile, a helping hand, a friend, a giggle bag, joining a group, don’t be alone, keep active, volunteer and help others, pets, plants, therapies, banging drums, beating or screaming into your pillow, food, drinking chocolate, music, laughter and more. I thought this would be an opportunity to recruit to my choir but everyone said, “We can’t sing,” Ellie sang the scales and we all ended up singing, “Doh-Ray-Mi” from Mary Poppins. Everyone joined in, it was fantastic and I think it surprised us all. Perhaps we’ll arrange some singing workshops and Ellie wants a drum beating workshop. We may yet have some budding choristers! We will be adding to this at each meeting, sharing them in our column, trying them out in the group and it will be available on request or on our web site, www.rhonddabreastfriends.org.uk

RBF’s first meeting after the summer break was very well attended. Congratulations to Shirley James on her 80^th birthday from all of us at RBF.

Members found Naomi from the lymphoedema service in Velindre “excellent,” very interesting and informative. She fully explained about the condition and answered questions providing helpful tips on self help with wearing bras, exercising, brushing and self massage.

Launch of pilot Cancer Information scheme, September, 25, 2009

 The new RCT  ‘Cancer Information in Libraries’ project which is the first of its kind in Wales was made possible by bringing together several partners: Rhonda Breast Friends, RCT Cancer Focus Group, Rhondda Cynon Taf Libraries, Macmillan Cancer Support and South East Wales Cancer Network.

Placing cancer information at the heart of the community, close to people’s homes, in 29 libraries and via 4 mobile units, will help to ensure that everyone in the RCT locality has easy access to high quality, accessible and appropriate cancer information: the worried well, people with cancer at any stage of their illness, carers, friends and relatives, cancer survivors, and health and social care professionals and students. Providing information in a friendly, non-threatening, non-medical environment also offers the potential of reaching harder to reach groups such as older people, men, black, minority and ethnic groups, those with lower levels of literacy, children and people who are unable to travel.

We were delighted to welcome Edwina Hart and Leighton Andrews to Rhondda Breast Friends on July 9th 2009

We were joined by representatives from local cancer groups, major cancer charities, the Local Health Board, RCT Council, Cancer Network, Carers and, Interlink.

The Minister was given an introduction to RBF which was formed after the chairman's  daughter died of Breast Cancer. this was followed by presentations by two trustees who told how they had benefitted from the group and went on to become trustees.

Presentations followed on partnership projects which came about from the work of the RCT Cancer Focus Group. It included:

• Forming the 1st Cancer Focus Group of its type in Wales in April 2008.
• Partnership working with local and national charities and healthcare providers
• The launch of the 1st Breast Cancer Care information stands in hospitals in the UK on 2nd July.
• The Launch of Carer Champions in GP Surgeries in July
• The Launch of the 1st Cancer Information in Libraries scheme

Edwina Hart spoke of “courage” and what it takes after a cancer diagnosis or having cared for someone with a cancer diagnosis, to get up and fight back. She spoke about the need for groups like RBF and the role of campaigning. The Welsh Assembly Government make decisions but groups like RBF can help them make better decisions. She spoke about the contribution of volunteers who give their time and expertise to help groups like RBF make a difference. She spoke about the Cancer Standards and the report that is being prepared regarding their implementation which she hoped would be favourable.

Giving his closing remarks, Leighton commented, “The minister was delighted with the afternoon. She was particularly impressed with the partnership working and the number of groups and organisations involved.”

Diane rounded up the day by complementing everyone and thanking them for their contributions on a thoroughly professional and enjoyable event which was an outstanding success. “We hope the ministers visit and recognition of our work will raise the profile of patients, carers, local groups, local and National Charities to become equal partners with the statutory sector in improving cancer care and aftercare and that we can work together to attain the excellent patient centred Cancer Standards pioneered and promoted by our Welsh Assembly Government

The meeting was well attended and we were pleased to welcome: two new members to the meeting, a lady returner and Kath Richards from the Carers' support Project.  Our news column seems to be spreading the word. 

Sally, who is also a volunteer for Breast Cancer Care, gave a talk on breast cancer awareness throughout life. The main messages were:

• Get to know your body, what is normal for you and don't hesitate to report any unusual changes to your GP for investigation. Partners are often very good at finding changes and needed little encouragement to help.
• Routine breast screening ends at 70 but many people did not realise they could (and should, if appropriate) continue to be screened on request at 3 yearly intervals.
• Research can be good but be aware of scaremongering and small scale studies reporting cancer caused by talcum powder, deodorants, various diets etc. many of which are undertaken on too small a scale to provide what our healthcare providers class as reliable evidence. 
• Continue to be aware of your body following treatment and be aware of what symptoms to watch out for including: extreme tiredness, exhaustion, pain in your bones, back or hips that does not go away, unexpected weight loss, nausea, etc.  

 A number of questions were asked.
Can stress or a traumatic event cause cancer?
It was suggested that if a person was under extreme stress it could have an effect on the body's immune system. This would affect the body's ability to fight disease and a healthy diet, exercise and reducing stress levels is recommended  to maintain a healthy immune system.
The benefits of complementary therapies was also discussed to help with stress, including relaxation, visualisation and breathing techniques. Reflexology and aromatherapy was also available in the local cancer centres

What is Lymphoedema
During breast cancer surgery lymph nodes are often removed. The lymph nodes act a bit like a plug hole which drains away lymph fluid from our body tissues. When removed or damaged sometimes there can be an abnormal build up of fluid leading to the arm swelling which can extend around to the back. It can happen soon after surgery or many months or even years afterwards. The lymphoedema specialist from Velindre will be giving a presentation at our meeting on  September 9th. For more information on lymphoedema visit the cancer backup site below or you are welcome to attend our meeting in September.

A discussion on information and the value of face to face information followed.

Brenda treated the group to home made scones and strawberry jam with cream. Members commented, delicious! The topic of conversation was planning for the visit of Edwina Hart, the Health Minister in the Assembly, on July 9th. Plans were also put in place for our annual outing which will be  to Cardiff Bay on 17th June. Bev told us of her bargains bought at RBF's stall on June 7th at the Memory & wish walk which she undertook and was sponsored by group members.

After teas and coffees we discussed the training sessions available to members.

• A new patient education programme pilot is to be run from Velindre starting on 16^th June for 7 weeks from 5:30 -7:30 and it covers all cancer types.
  • Members thought the invite was not very "patient friendly." It seemed very authoritarian and you are expected to attend all 7 weeks which was seen as a big commitment.
  • Velindre was seen as a long way to travel and a closer venue would be preferred. Also most members did not want to visit Velindre treatment centre any more than they had to.  
  • You are also expected to show what you have learnt so that it is meaningful to you and actually helps you live better with your condition. Some members thought  it expected too much from people and that you might have to sit an exam at the end!
  •  ...would breast cancer dominate?
  • If other courses are running specifically for breast cancer, why would we go on this one?
    
• Annual course are held in Royal Glamorgan, specifically for breast cancer. It was a 6 week course and run by the breast cancer nursing team. Members felt the venue was more accessible. Two members had attended and found it very good.
  
• Breast Cancer Care are running a 4 week course on breast cancer from Cathedral Road
  

Other discussion:

• Waiting times for results
  • one member had to wait 2 weeks for the results of a scan 
  • another member had to wait for further investigation before having radiotherapy and she foud waiting in hospital was a very stressful time. especially when the cardiologist did not turn up.
    
• Diabetes training for medical staff.  You are asked not to eat the night before having surgery. However, one member found herself last on the list for surgery the next day because the staff did not realise the impact of diabetes. Apparently training for courses is not compulsory, medical staff can choose what courses they attend.
  
• Environmental Quality mark for Cancer Facilities in the UK
  Macmillan are developing the quality standard which aims for excellence in the design of environments for cancer care. Sally is going to a conference in Abergavenny on 17th June and will report back.
  
• Breast Test Wales Meeting : Sally, reported they were updating machines with a view to reducing waiting time. This was welcomed by us all.
  
• Annual Programme: It was suggested that Dean Powell be approached to give a talk on Dr Price. Contact details to be given to Nikki.
  
• Maes Y Haf, Community Hall: The Council wanted to close the community hall or it  was being proposed to set up a management committee to run it.

 Next evening meeting is on 10^th June at Ty-Ddewi 

Next Coffee morning is on 26^th June and Sally will be giving a Breast Cancer Awareness Talk