Cheryl also gave a talk on health and cancer prevention diets which provoked a lively discussion. One tip was about bottled water which if left in the car or in a warm place will absorb toxins from the plastic bottle. These toxins have been found in breast tissue. Cheryl recommended glass or stainless steel containers which could be bought cheaply from TESCOs.

Speaking at the 3rd Rhondda Breast Friends’ Annual General Meeting on 29th April, Chairman Diane Raybould reported on another amazing year full of achievements, including the launch of RBF's new website. www.rhonddabreastfriends.org.uk where you can find out all about the support group's meetings and also its achievements in campaigning for improved cancer and carer services.

Guest speaker Leighton Andrews, Assembly Member for Rhondda, spoke about the effect RBF's petition had on raising the profile of Cancer Standards in the Welsh Assembly with the direct involvement of the Health Minister, Edwina Hart.

The Support Group
Throughout the year our monthly meetings were extremely successful, with a coffee morning on the last Friday of each month at The Rhondda Heritage Park Hotel, coupled with an evening meeting on the second Wednesday of each month at Ty Ddewi. New members are welcomed, ring (01443) 683220 for details or visit our website.

Campaigning
Although RBF are a small local charity, we have succeeded in influencing services on a local, regional and national basis and that is quite something!

RBF's first year saw us raising awareness of breast cancer in the community, fundraising and networking with other local and national cancer organisations.

The second year was about giving people with cancer a voice and our Community Cancer Conference was the first step in this process.

Our 3rd year 2008, saw us building on this work with:

• The launch of our Charter of Rights for people living with cancer and their carers.

• Setting up RCT Cancer Focus Group with the aim of: giving voluntary and community groups a voice on cancer issues.

• The start of a joint project with RBF, Macmillan, RCT Council and the Local Health Board to provide cancer and carer information.

• A petition to the Assembly to ensure that Local Health Boards across Wales were achieving1 the promised Cancer Standards.

• Their Cancer Carers workshops organised jointly with the Carers Support Project has resulted in raising the profile of all carers in RCT and joint action by the Council and Local Health Board to promote Carer Champions in all GP practices across Rhondda Cynon Taff and Merthyr.

Other highlights of the RBF year included:

• Winning Interlink’s “Trustee of the Year” category in the Volunteer Awards .

• Inspiring a new Breast Cancer Support Group in Pontyclun.

• Going to the first Cwm Taff Cancer Services Strategy Group in December 2008 at which RBF had fought hard all year to achieve patient and carer representation .

• All these highlights, but the most unexpected and emotional one for Diane was when she was called upon to receive a donation at Slimming World’s Xmas Ball by Nicola Jones (also founder trustee) when RBF received a standing ovation, “it was a wonderful feeling,” Diane enthused.

Thanks to Officers, Trustees & Members.
Diane acknowledged the help and support of the officers, trustees and members and paid tribute to the retiring treasurer, Judith Caddy and Trustee Rhianydd Walker, who were thanked for helping to grow and develop RBF into a strong, caring organisation and a force to be reckoned with.

New Treasurer
Michelle Evans was welcomed as the new treasurer.

Community support & the future.
Fantastic fundraising by the public has been gratefully and humbly received by RBF: in memory of loved ones, from quizzes and haircuts to walks and bike rides, from football and auctions to coach trips, pamper days, calendar and card making sales, they all did so well. The money raised will now help RBF to fund the joint projects they have worked so hard to set up to include: a new information handbook to be given to cancer sufferers and carers at first diagnosis, a pilot cancer information scheme in all RCT libraries - the first in Wales, information stands in hospitals, promoting their Carer’s Charter and providing cancer awareness and prevention information across Rhondda and Merthyr.

If you would like a copy of RBF's Annual Report please e.mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it This e-mail address is being protected from spambots. You need JavaScript enabled to view it download from the website: www.rhonddabreastfriends.org.uk or ring: (01443) 683220.

We met in the Heritage Park Coffee shop with a good number of members. The Staff were very kind and gave us BOGOFF vouchers (buy one get one free on our teas and coffees). Bev said the cakes were yummy too!

At the previous meeting a number of queries had arisen on radiotherapy so we welcomed Joyce Butters, the Macmillan radiology information and support  officer fr om Velindre to join us for question time. We had a lively session with many question asked that had worried members, including, "if my treatment was on the right side, why did I have a tattoo dot on my left side?"

We all learnt quite a lot from listening to the questions and answers and thought it very worthwhile. Open evenings are run regularly at Velindre so you can learn more about radiotherapy and you get a chance to visit before your treatment starts. There is also an information booklet explaining about radiotherapy and if you have any queries Joyce can be contacted at Velindre or leave a message and she will get back to you.  
                                 Common Questions about radiotherapy for breast cancer

• Where is the radiation situated?

  • You will have the whole of your breast (or chest wall if you have had a mastectomy) treated. Sometimes the glands in your neck are treated if any of your lymph glands contained cancer at the time of your surgery.

• Why do I need radiotherapy if they’ve taken all the cancer cells?

  • In most cases radiotherapy is a ‘just in case’ measure to destroy any cells that may be left. This is to reduce the risk of cancer coming back.

• What is planning?

  • Radiotherapy treatment is planned individually for each patient. We use a CT scanner to plan your treatment. From the scan your doctor and physics staff and radiographers work together to arrange the treatment beams in exactly the right place for you.

• What are the dots for?

  • The dots are reference marks so we can position you in exactly the same position as you were for your planning scan. You need to be in exactly the same position every time you have radiotherapy.

• Does radiotherapy cause lung scarring?

  • Most late side effects of the radiotherapy are due to fibrosis (thickening of your tissues) which can affect your breast, lung or heart. The risk of late side effects is small.

• Does radiotherapy affect the ribs?

  • A rib fracture is a possible late side effect but unlikely to happen. It may not cause any symptoms at all.

• Are there many errors?

  • Errors are possible but we go to great lengths to prevent any errors.

• Are there any checks?

  • We will check your name, address and date of birth every time you come for treatment.

  • All the radiotherapy planning and all the calculations are checked by radiotherapy and physics staff.

  • Checks are done every day by the radiotherapy staff treating you. We always work with at least another radiographer so we can check each other.

• What dose do I have?

  • Your doctor will decide the dose but the usual dose is 40 Gray given in 15 daily treatments over three weeks.

• What information is given?

  • A booklet called Having Radiotherapy for Breast Cancer at Velindre Hospital will be given to you in clinic when you see the doctor.

  • We have regular Radiotherapy Open Evenings on the first Tuesday of each month at 7pm.

  • You can get the booklets ‘Understanding Breast Cancer’, ‘Understanding Secondary Breast Cancer’ and ‘Understanding Lymphoedema free from Macmillan Cancer Support and Cancerbacup. Phone 0800 500800 or visit www.be.macmillan.org.uk

• Why have they given me a gown?

  • You need to undress your top half so the radiographers can set up the treatment accurately. The gown is slipped off in the treatment room.

• Do I have to wear the gown to the department?

  • No, wear normal clothes to the department and we have changing rooms for you to put your gown on.

• What is the Macmillan Information and Support Radiographers role?

  • The Macmillan Information and Support radiographer role is to give practical and emotional support to you and your family if you need that help. She can make referrals if necessary and provide counselling for you and your family and support you before, during and after radiotherapy.

• Are there other support officers?

  • The other staff that can support you during treatment are our review and treatment radiographers. You may also have a specialist nurse assigned to you too. We can make referrals to other sources of support (e.g. Welfare officers) if necessary.

• What are their names and contact numbers?

  • There are too many to list here. Professionals who can support you are listed in the back of the booklet.

• Who can I talk to?

  • Please speak to your treatment radiographers firstly and ask to talk to the Macmillan radiographer if you need more time.

• Can I go on holidays?

  • Yes you can go on holidays (but not during your treatment).

• What precautions should I take? – skin care in sun and insurance

  • The area of skin that has been treated will be more sensitive to the effect of the sun – you will burn more easily in that area. Please use a high factor sun cream (factor 30 or above) for at least the year following your treatment but remember your treated skin will always be more sensitive.

  • Your holiday insurance company must be told you have had a diagnosis of cancer. This may mean your premium will be higher. There are insurers who are happy to insure you but there are some who won’t after a cancer diagnosis. Here are a few to compare prices of premiums:

    • Cancer travel Insurance (provided by Mediquote) www.cancertravelinsurance.com 0845 880163

    • Free Spirit travel Insurance www.free-spirit.com 0845 2305000

    • It’s So Easy Travel Insurance www.itssoeasytravelinsurance.com 0845 2224205

    • Marks and Spencer (for medical conditions including cancer) www.marksandspencer.com 0800 7312424

• Can I use deodorant?

  • We suggest you don’t use deodorant under the arm you are having radiotherapy for. It may make your skin more sore.

• Can I use shower gel, soap and creams?

  • Yes but unscented ones such as Dove, Simple soap or Neutrogena. Only use Aqueous cream on the area being treated.

• Lymphoedema - what are precautions now and in the future? (Answer taken from the Cancerbacup/Macmillan booklet on lymphoedema)

  • Not everyone who has radiotherapy will get lymphoedema. Lymphoedema is more likely to happen if surgery and radiotherapy are given together to the same area. Radiotherapy is not given to your lymph nodes if you have had them removed by surgery. You can help to prevent lymphoedema by trying not to put too much strain on your lymphatic system. This means trying to avoid infection or inflammation in the treated area. So, you need to avoid cuts or grazes, insect bites and stings if at all possible. Gentle exercise can be helpful but it is sensible not to over-exercise the area as this may increase the risk of lymphoedema developing. Your nurse, physiotherapist or lymphoedema specialist can advise you.

Tips to prevent skin damage and reduce risk of infection.

• Moisturise your skin gently every day with non-perfumed cream or oil. This helps it stay supple and in good condition.

• Avoid using needles (including acupuncture) or having injections in the affected area (i.e. your arm).

• Have your blood pressure taken on your unaffected arm.

• Wear gloves for washing up and other household jobs to avoid cuts.

• Wear gloves and long sleeves if you are gardening or handling animals so that you do not get scratched.

• Use insect repellent to prevent insect bites. If you are stung on, or near, the affected area, get medical advice.

• Use a thimble when sewing.

• To avoid cuts, use an electric razor when shaving hair from the affected area.

• Cut your nails with nail clippers and use hand cream regularly.

• Never push back or cut your cuticles.

• Treat even small cuts and grazes straight away. Wash the area thoroughly and cover if necessary. see your GP as soon as possible if you develop any signs of infection around the cut – redness, heat or inflammation.

• Excess heat can increase the swelling so try not to have your bath or shower too hot. It is also a good idea to avoid saunas, steam rooms and sun beds and not to sit too close to a fire or other direct heat.

• To avoid burns when cooking or baking, wear long sleeves and use oven gloves.

• Avoid sun burn on the affected area.

• Don’t like to bother staff they are so busy.

  • The staff are busy because that’s their job and their job is to look after you, so they are very happy to listen to your concerns and hopefully help.

• Can I wash my hair?

  • Radiotherapy will only affect the area that is being treated so it is absolutely fine to wash your hair as normal.

Queries were asked aout lymphoedema and this will be a topic arranged for a future meeting.

We thanked Joyce for a really good information session.

Looking forward to welcoming you all at our next meeting, Best wishes, Diane

We met at Ty Ddewi. There were a few members missing, but those there welcomed one new member  Margaret Jones, we hope that we made you feel one of the group. It was a very informal evening with no speakers but this meant that we could have a good chat. We talked about the AGM on Wednesday 29th April at Ty Ddewi. We discussed the RBF's web site that will be lunched at the AGM and how we will have maybe just 3 of the Trustees who can have access to added items to the site but we would like some members to have responsibility for certain topics, i.e. fiction books library list, medical books library list, recipes for the cook book, breast cancer questions and answers section etc. etc.  There will be paper copies of appropriate items from the Web Site for those members who do not wish to use a computer. We gave out questions for the members to think about and return to Sally at next meeting, these were to support the running of the group and make sure that we are providing just what members would like from the group.

1. What would you like to see on the Web Site?
2. Who would you like to give a talk/demonstration to the group? Or what subject?
3. Where would you like to visit with the group?
4. Have you any Breast Cancer worries, queries or questions that you would like us to find an answer to?
5. Have you any suggestions to make about Rhondda Breast Friends?

We discussed the need for a people carrier sized taxi to pick people up and take them home. Anybody with transport difficulties please talk to one of the Trustees. There was tea/coffee and biscuits plenty of laughter and the meeting finished at around 9pm.

Our Monthly meeting was a treat at the Heritage Park Hotel where we celebrated International Women's Day. Our Chairlady Diane was singing with the Heritage Singers and managed to get us tickets. Speakers included our Mayor Margaret Davies, Christine Chapman AM and others.

The theme of the night was the miners strike and the supporting role that women played. A colourful banner made by the women of the time was displayed. There was a picture display organised by Lindsay Morris of Pontypridd Library depicting the times. A play composed by local school children was also well recieved.
The entertainment also inluded a belly dancer and Polynesian dancer together with a traditional Welsh choir, celebrating the diversity of women.

"A very empowering evening," Ellaine said, "It was excellent, outstanding and we all thoroughly enjoyed it," and she's not biased! If you would like to contact the Heritage Singers tel:  01443 683220.

The morning was well attended and we welcomed Melanie who introduced a new member.

"Looking Good, Feeling Better"
As we enjoyed our coffee, Bev took us through her experience of the "Looking Good, Feeling Better" programme which is offered by Velindre to people who have suffered breast cancer. Barbara from the Pontyclun breast cancer support group had allocated us 4 places so Bev, Anne, Morfydd and Diane met with Cynthia and Barbara from Pontyclun and we had our "before" picture taken. We were all given goody bags filled with cosmetics and perfume and treated to a pamper session and shown how to use the make up provided. When we were all looking glamorous we were served tea and coffee and complimented each other on our "transformation".....time for our after photo! We thoroughly enjoyed the experience (and the goody bag). If you get the chance, grab it with both hands.

On a more serious note:

• We discussed the role of young adult carers and in particular when a family member dies and a young person is left to care for those left behind, while also dealing with their own grief.
  The Carers Support Project in Rhondda Cynon Taff provides free counselling, advice and support for carers. They also produce a guide to services for people affected by cancer, their carers and families in RCT.  The number to contact is : 0808 100 1801.
  Macmillan also have a support book for carers called "Hello and how are you?" available on-line or by telephoning: 0800 500 800 
  
• Waiting times for results following investigation can be very worrying. One member had to wait 5 weeks for the result of a bone scan, this was felt unaccceptable and will be referred to the Cancer Network in Cariff.
  Waiting times for results of mammograms also differed from area to area and 2 weeks was felt to be too long.
  Waiting times for radiotherapy is currently about 7 weeks when the recommended time is 4 weeks. There is no way at the moment they can meet the standard. Again this will be referred to the Cancer Network

Our very versatile Sally also makes cards which she has been doing since a child.  
(Not many years then Sally!) She volunteered to supervise a card - making evening for us and with Valentine's day around the corner it was a chance to think of romance, although some members did choose to make birthday cards. We had our teas first in case of spillages.

Sally brought a wonderful array of materials and templates along for making cards in all shapes and sizes. She guided us through decorating the cards and making inserts. It was fun to do and great to see how individual cards could be made. Her husband had made a gadget to make tiny ribbon bows for decoration. I'm sure partners were well impressed on the 14th!

Today we had a good meeting with updates on the work of the Cancer Focus Group. We welcolmed Sheala Edwards from the Princess Royal Trust for Carers in Cardiff. Sheila has been supporting us since we set up the Cancer Carers sub group. She brought a selection of publications for our information.

We all sat around a big table and after teas & coffees were served, the topic of the day was about good information at the right time, which was seen as essential to help patients understand a cancer diagnosis, treatment options, support and services available. Carer support was also discussed. 

Sally took us through the information packs we are putting together for newly diagnosed patients, helped by Velindre information officer, Toni Muller. Sally is the Chair of the information sub group and is also a "buddy" for Breast Cancer Care. Sheala discussed information for carers and we are putting together a separate information pack for carers.

That was the easy bit. We now have to get Cwm Taff Cancer Services Strategy Group to approve it and bring in procedures to ensue that everyone diagnosed with cancer gets a copy.......watch this space.

Menna had the idea of a recipe book of our favourite dishes. We decided it would be nice to bring samples to the meeting for everyone to try. We had health drinks, home made vitamin, mineral and essential oil supplements, canapes, gluten free cakes and ice cream and lots of luscious cakes and welshcakes. It was a resounding success!

Photos from the meeting: Sally tries out Ellie's garlic health drink, not for the faint hearted. 

Anne hands around Suzanne's salmon and bacon wraps which flew off the plate.