Breastfriends Cardiff and Vale
Breast Cancer Support Group
Welcome to our latest newsletter: we hope you enjoy it
and we hope to see you at one of our meetings soon!
- Maggie Hourihan, Chairperson
JUNE
2016
A Day to Remember!
On 15 March 2016, 24 amazing models took to the catwalk at
Breast Cancer Care Cymru’s Fashion Show at the Wales
Millenium Centre and I was one of them!
Three weeks before the show all 24 models, including two
wonderful gentlemen, met with the two stylists who had selected
the four changes of clothes that we would be modelling on the
day. We all met again at The Millennium Centre, Cardiff Bay on the
day of the show, at 8:30am! After having our hair and make-up
professionally done we were put through a bit of a chaotic
practise run. Everyone was so excited. There didn’t seem to be any
nerves showing.
Stepping out onto the catwalk for the afternoon show was electrifying. The audience
was whooping and cheering. It was wonderful to spot people we knew in the audience
waving and taking photos. The evening show was even more amazing with members of
the Welsh Rugby International Team acting as our escorts whilst we modelled our
beautiful evening dresses. (continues Page 5)
Breastfriends - Who we are and What we do
Breastfriends is a well-established, friendly support group for anyone who has had a
diagnosis of breast cancer whether it was last week, last month, last year or many years
ago.
We meet once a month in Cardiff and once a month in Barry (see Page 8) and we also
meet regularly for short walks in lovely surroundings
(see Page 7).
We know that talking to others who understand can really help but also understand
that walking into a room of strangers can be off putting so please get in touch to arrange
a buddy for your first meeting.
Contact details are on Page 8
INSIDE THIS ISSUE:
Deep Inspiration Breath Hold & Finding Holiday Insurance - PAGE 2
Giving Something Back - PAGE 3
Dates for your Diary - PAGE 4
A Day to Remember Cont & Over 70s Screening & Update from Breast Cancer Now -PAGE 5
The End of An Era & Macmillan Activity Promotion Programme - PAGE 6
Walking with Breastfriends & Team Barbra Update - PAGE 7
Meeting Dates & Contact Us - PAGE 8
PAGE
2
B R E A S T F R I E N D S C A R D I F F A N D VA L E
Deep Inspiration Breath Hold (DIBH)
What is DIBH?
Deep Inspiration Breath Hold is a new technique that we’re developing at Velindre Cancer Centre that means
holding your breath for intervals whilst you receive Radiotherapy Treatment.
Why do we have DIBH?
For some patients, with left sided breast cancer, we need to limit the heart treatment dose as much as possible.
Every patient’s heart position is slightly different and this can only be detected at our planning scan. If a patient’s
heart is within the treatment field then DIBH is one way of reducing this dose.
How does DIBH Work?
By holding your breath this expands your chest away from your heart therefore reducing the dose it receives. By
breathing in slowly and deeply through your nose, you expand the chest keeping your back firmly against the bed.
This is practiced until a patient can sustain the breath hold comfortably for 15 seconds with the Radiotherapy
Treatment staff who will be present at every treatment.
Through the use of an infrared camera we are able to monitor a patients’ breathing pattern, from this our RPM
(Real-time Position Management) system can detect when the patient has breathed in correctly and achieved the
breath hold required for treatment. If a patient is unable to maintain the breath hold, this system delays the
treatment delivery until breath hold is achieved again.
What if I can’t achieve the required breath hold?
That isn’t a problem at all, we use our computer planning system to work out the dose that you will receive. This
system is also able to apply different types of shielding to certain areas and we would be able to achieve a lower
heart dose in that way.
Ffion Watkins and Lori Fitchett, Senior Radiographers, Velindre Cancer Centre
Finding Holiday Insurance
Research is the best way to find travel insurance providers that may cover
you. Here are some tips from Macmillan’s website to help you:




Visit Macmillan’s online community – travel insurance is widely
discussed on our forum. By reading the conversations there, you’ll find the providers people are
recommending.
Find insurance through a broker – they search for suitable insurance for you. You can find a qualified and
regulated broker through the British Insurance Brokers’ Association.
Search for companies online – search engines or comparison sites are often a good starting point. But they
may not list all of the companies available. Try to compare as many quotes as possible.
Check for travel insurance through your bank account, credit card company or supermarket.
Many insurance companies now allow you to apply for travel insurance, and give your medical details, through
an online form. Others will need to speak with you on the phone.
Remember, price is not the only factor to consider – check the insurance is
suitable for your needs.
JUNE
2016
PAGE
3
Giving Something Back
I have been a Breast Cancer Care telephone support volunteer since 2004. I was diagnosed
with breast cancer in 1999 and had a wide local excision, chemotherapy and radiotherapy
followed by five years of Tamoxifen and ten years of Letrozole. I decided I would like to be a
support volunteer (now called Someone Like Me) because I had so much support
throughout my treatment and felt I would like to help others over the rocky course a breast
cancer diagnosis brings.
All volunteers have to be at least 12 months post treatment and I found the course
interesting, challenging and fun! The Breast Cancer Care team telephone whenever they
have a possible client and then arrange for the first call to take place. I always make sure I
have some peace and quiet before calling a client, telling the family I will be “out of action
for a while” and please do not disturb – getting the message to my little dog is not so easy!
After the initial introduction, it is important to ask if it is a convenient time to speak. Most
clients are delighted to receive a call and very soon the conversation flows easily. I have
had a wonderful variety of clients ranging from midwives to farmers and musicians.
Listening is by far the most important aspect of being a support volunteer. So many clients are anxious to talk to someone who can say with honesty “yes, I do know how you
feel”. Frequently they worry about burdening their family and friends with their medical
problems but occasionally they do not want to tell anyone of their diagnosis. One lady discussed at length who would feed her cat while she was in hospital as she did not want anyone to know she was unwell. I always respect the client’s wishes and the decisions they
make and all calls are strictly confidential.
Clients often worry when friends say “well, now it’s all over and you are back to normal”
and that is just the time when some breast cancer patients can feel most isolated – no
more regular treatments, no regular routine and only a distant appointment with the medical team. I also find many clients welcome the opportunity to talk to someone who is not
necessarily medically trained and not close family or a friend. One lady I well remember
said, “Thank you so much for letting me have a good old moan everyone else gets fed up
with me!”
Although we are trained not go give specific advice I try and steer clients towards reliable
websites if they use the internet. It is also useful having access to a selection of suitably
reliable books. I also advise clients starting treatment to make a chart of all the numerous
drugs they will probably have to take. Coming away from my first chemotherapy session
with a bag of pills it was daunting working out what to take when so a chart was invaluable.
At the end of the telephone call I make some notes of our conversation so I am able to reflect back on points of concern the client has mentioned and ask about them when I next
call.
As a volunteer it is always reassuring knowing the Breast Cancer Care team are only a
phone call away and are immensely helpful. Some calls can be quite challenging and sometimes people have questions that I can’t ask answer so I point them towards Breast Cancer
Now and the Breast Cancer Care helpline.
I find most clients are welcoming and interesting and it is immensely rewarding being able
to help them. Judith Evans
“Thank you so
much for letting
me have a good
old moan,
everyone else gets
fed up with me!”
PAGE
4
B R E A S T F R I E N D S C A R D I F F A N D VA L E
Dates for Your Diary
Breast Cancer Care Cymru Dates
Moving Forward Courses
This free four week course (one morning per week)
covers a range of topics to help you move forward
after treatment. Expert speakers are happy to
answer questions and there’s time to share experiences with people in a similar situation to you.
Cardiff
Llandough Breast Centre
10am – 1pm
Mondays 5 – 26 September 2016
Newport
10am – 1pm
Tuesdays 1 – 22 November 2016
Living with Secondary Breast
Cancer has been designed to give you
the opportunity to meet other people
living with a secondary diagnosis and
get relevant information and support.
In each area there are regular (usually monthly) meetups where you can chat and share experiences with
others with a secondary diagnosis. Topics include pain
management, fatigue, benefits, and side effects sessions –
we also welcome suggestions for topics you would like
to cover.
If anyone is interested in the Living with Secondary
Breast Cancer service they can contact Breast Cancer
Care Cymru on 0845 077 1893 or email
[email protected]
17 June - Clinical Trials - 11am-3pm
15 July-Meet up 11am-1pm
19 August-Meet up 11am-1pm
Booking is essential for the above Breast Cancer
Care Cymru events. Please call 0345 077 1894 or email [email protected] for more info.
Cardiff & Vale Lymphoedema Support Group
Breastfriends
Annual Strawberry Tea
The group meets (7.30-9pm) at Ararat Baptist Church ,
Plas Treoda, Whitchurch Common, Cardiff CF14 1PT
Wednesday 13 July
Wednesday 14 September
Wednesday 9 November
& AGM
Monday, July 11th, 7pm – 9pm
Canolfan Centre, Rhiwbina CF14 6LX
Guest Speakers
The latest News in Breast Cancer
Treatments and Myths
Dr Annabel Borley and
Dr Helen Passant
Oncology Team
at Velindre
Guest speakers are invited to talk about subjects
relating to Lymphoedema and other topics of interest.
Everyone is welcome who has an interest in
Lymphoedema and includes those with the condition,
their families and carers. For more information, please
contact Barbara Burbidge 029 2075 6192
All Welcome!
BREASTFRIENDS
CARDIFF
www.yogamobility.org
AND
VALE
029 2048 2673
JUNE
2016
PAGE
5
A Day to Remember! (from page 1)
One memory I will always have of the event is being able to experience what it is like to be a real fashion model.
The organised chaos behind the stage as we flung off one outfit and grabbed the next whilst hair and make-up was
hastily re-done, then back out onto the stage again. Sadly, all too soon it was over and we were presented with
beautiful bouquets of flowers, danced to the band and soaked up the compliments from those that had watched
the show. I don’t think I slept for the next 4 nights; I just couldn’t get over what I and an amazing bunch of people
had achieved. And to hear that we had helped to raise over £90,000 for such a wonderful charity was the icing on
an extremely wonderful cake! Would I do it again? You bet your fashion boots I would!!!
Jane Shatford
And here’s what some of our other members who joined Jane on the catwalk had to say:
‘We were all so pleased to do it again in the evening which was even more special as my
family were there to cheer me on. All of us felt that this was a once in a lifetime experience
and just go for it! This was one of those occasions when having had breast cancer led to
something really special. For me it was up there with getting married and having babies,
an experience I shall always remember’. Kaye Mundy
‘So often people seem to put each other down, the show was all about supporting each
other and lifting each other up’. Lynn Abel
‘To feel truly special for the day was wonderful. To think, in just 4 years I went
from the lowest I've ever been, to feeling like a movie star, strutting my stuff on
the catwalk. To share that experience with my family and friends who supported
me through the dark times was the icing on the cake. Absolutely fabulous!’
Jo Lewis
‘So what was the best bit of the night ? Walking down those steps off the stage and
joining my family and friends. What an amazing night and I would like to urge anyone thinking of having a go at
being a model next year - to apply - what a real celebration of life’. Mel Doel
Inspired? Interested? Fancy strutting your stuff in 2017?
Please email [email protected] to register your interest.
If you are over 70…… Message from South East Wales Breast Screening Centre
‘We will not invite you but you are still able to be screened if you wish. Please ask us for an appointment by getting in touch with your local Breast Test Wales screening centre. Screening is only available every three years.
South East Wales Breast Screening Centre
18 Cathedral Road, Cardiff, CF11 9LJ, Telephone: (029) 2039 7222
Update from Breast Cancer Now
In the run-up to the Welsh Assembly elections, Breast Cancer Now launched their first ever Wales specific campaign. The Stop Women Dying campaign called on members of the public to contact their local Assembly candidates and ask them to become Breast Cancer Ambassadors if they got elected. The campaign aimed to ensure
that as many new and returning Assembly Members as possible had committed to taking action to stop women
dying from breast cancer in Wales. If you’d like to find out if your Assembly Member
backed the campaign contact
[email protected]
PAGE
6
B R E A S T F R I E N D S C A R D I F F A N D VA L E
The End of an Era!
At the end of March, Velindre Cancer Centre said goodbye to Head of Therapies,
Helen Tyler.
Helen qualified from Cardiff University as a Chartered Physiotherapist in 1978 and
worked for 2 years at the University Hospital of Wales in general physiotherapy
before specialising in paediatrics. This role included work with Cystic Fibrosis patients
and later in a special school for children with Cerebral Palsy.
Following a career break to bring up 2 boys, she returned to work as a part-time
lecturer in Further Education for 13 years, teaching anatomy, physiology, massage
and exercise and then at Cardiff University to undergraduate Physiotherapy students
for a further 2 years.
Helen then combined her education role with clinical physiotherapy, working as a part-time lecturer at the
University and Physiotherapist in Oncology and Palliative Care when she took a part time role in the Therapies
team at the Velindre Cancer Centre. She then specialised in Oncology and worked full time as Clinical Lead
Physiotherapist until 2005 when she became Macmillan Therapies Manager at the Cancer Centre.
Her responsibilities as Therapies Manager bring together Physiotherapy, Occupational Therapy, Dietetics, Speech
and Language Therapy and previously the Lymphoedema service and Complementary Therapies, to provide an
integrated and person centred approach to support people affected by cancer to maximise their potential so that
they are empowered to achieve the best possible quality of life.
Enjoy your well-deserved retirement Helen!
Macmillan Activity Promotion Programme
Finishing my treatment just before Christmas I found out about the Macmillan Activity
Programme and after nine months and very limited physical exercise I needed someone or
something to give me the push to move more.
The course - What do I wear? Teenage granddaughters advise, lurid pink and purple sports gear! I
wore just pull on sports trousers and a short sleeve shirt or just comfortable indoor wear.
The physical activities- Circuits, I had no idea what circuits were. I soon found out, seven or eight
exercises arranged around the room. We completed two circuits spending about 4 minutes on
each exercise. All the time the sharp eyes of two physiotherapist observed our efforts. They were
there when we had difficulties encouraging and praising our efforts. Not at all like past P.E. teachers I endured.
The advice on diet was also very useful. Lessons on mindfulness I still practise. A taster of Tai Chi and yes I am
joining a class.
I enjoyed the course!
Irene Bowen
MAPP is a 6 week programme for people living with a cancer
diagnosis who want to get more active.
If you are interested please speak to your GP or contact the MAPP team on
02920 615888 ext 6340 or @[email protected]
JUNE
PAGE
2016
7
Walking with Breastfriends
There’s so much research and evidence on the benefits of even small amounts of exercise in
the fresh air with like-minded people and our happy, chatty Breastfriends walks are fast
becoming living proof of that with one of the regular Barry walkers recently saying, ‘ it's great to
get out in the fresh air with nice people that you can get to know more informally than at a group
meeting - it a morning spent with friends’.
This is the second year for the Barry Group who have stunning ‘Barrybados’ on their doorstep and the group
now walks every week alternating between the Knap with refreshments at Romilly’s afterwards and Barry Island
where the walk ends with a visit to Whitmore and Jackson. Both walks are on the flat and not too challenging.
The Knap walks meet at the phone box at the Knap Gardens at 10.30am and planned dates are
Tuesdays June 7th and 21st, July 5TH, 19th, August 2nd, 16th, 30th etc. For more information on
the Barry walks and to check they are going ahead, please contact Rosina Butler on 01446
745269 or Linda Watts on 01446 710516 or 07967 806073 (pictured).
The Cardiff walks started in April and take place fortnightly in ‘magical’
Roath Park. We meet by the iconic lighthouse at 10.30am for a leisurely
stroll around the lake which takes about half an hour and then it’s to the
café where, weather permitting, we sit on the terrace overlooking the lake and imagine
we’re on the French Riviera! At the moment we’re walking every other week and planned
dates are Tuesdays June 7th and 21st, July 5TH, 19th, August 2nd, 16th, 30th etc.
In response to a request for an evening Cardiff walk, we’re going to trial every Tuesday
evening through the summer starting on June 7th and meeting by the lighthouse at 7pm.
For more information on the Cardiff walks and to check if they’re going ahead, please
contact Sue Youngman on 07773 500525.
Team Barbra Update
After five amazing years representing Breast Cancer Care at various challenges and raising a staggering £52,525
for the charity, Team Barbra is taking a well earned rest from fundraising to concentrate on walking and
encouraging others to look at what they can do not what they can’t.
The first half of 2016 has seen some of the team acting as volunteer back markers for the IAAF World Half
Marathon Championships supporting those at the back of the field to the finish line in true Team Barbra fashion!
A number of us turned out to support the Cardiff &
Vale Breast Cancer Now Paint the Park Pink Spring
Walk in beautiful Bute Park which, in spite of the
weather, raised £124 for the charity.
Sue Youngman
Walk the Big Dipper (10 miles) or the Little Dipper (5 miles).
Whichever constellation takes your fancy, you will be helping us to
cover more miles, raise more money and help more people in your
community!
http://www.tenovuscancercare.org.uk/get-involved/sign-up-to-anevent/cardiff-goodnight-walk-2016/
B R E A S T F R I E N D S C A R D I F F A N D VA L E
BREAST CANCER SUPPORT GROUP
JOIN US AT ONE OF OUR
CARDIFF OR BARRY
MEETINGS…!
Cardiff meetings
Our Cardiff group meets on the second Friday of each month from 1pm – 3pm at the Margaret
Whittaker Lounge, Rhiwbina, Cardiff
(on the crossroads between Heol-y-Deri and Beulah Road).
Friday 10 June, Coffee and Chat, sharing tips on fatigue and menopausal symptoms
Friday 8 July, Coffee and Chat
Monday 11 July, STRAWBERRY TEA & AGM 7pm—9pm, Canolfan Centre, Rhiwbina CF14 6LX
Dr Annabel Borley and Dr Helen Passant
Latest in Breast Cancer Treatments & Myths
NB ** There is no Friday meeting in Cardiff in August **
Barry meetings
Our Barry group meets on the third Friday of each month from 2pm – 4pm
at the Mary Lennox Room, Barry Hospital, Colcot Road, Barry CF62 8YH.
Friday 17 June, Tanya Ball, updates in local lymphoedema service
Friday 15 July, Carol Young, Laughter and Health
Friday 19 August, Meet for Afternoon Tea at Whitmore and Jackson’s, Barry Island
Pre-booking needed. Please contact Rosina Butler on 01446 745269 or Linda Watts on 01446
710516 or 07967 806073
More information on our meetings and speakers can be found at
www.breastfriendscandv.org.uk
Phone: messages care of Breast Cancer Care
Cymru on 0845 077 1894
For Barry meetings call Rosina Butler on 01446
745269 or Linda Watts on 01446 710516 or 07967
806073
Email: [email protected]
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Published by Breastfriends Cardiff and Vale Registered Charity Number: 1113068