Pancreatic Cancer Support Network

We run a support network for those dealing with pancreatic cancer - either as patients, partners, children or friends. In particular we provide a support network not just for patients but for carers of pancreatic cancer patients. This is currently done as email contact but other activities are planned for the future. We put people in contact with others in a similar situation so they can share their experiences.

Les Niewiara, who had a pylorus preserving pancreatectomy operation in November 2003 is acting as our patient representative.

We would love to hear from you if you would like contact with others or have suggestions for new services that we could provide.

We have a variety of different people in the support network who are prepared to share their experiences with others who may be facing the disease for the first time and uncertain about treatment or who may just want contact with others in a similar situation.

For example:

• carers, partners, relatives and friends of pancreatic cancer patients
• a gentleman who is 71, over 5 years post Whipples' who learnt to fly after the operation and became the first person to pass a civil aviation medical with part of his pancreas removed,
• other Whipples' patients of various ages from their 30s upwards and a variety of experiences pre and post surgery
• patients and/or their families and friends with a number of different types of pancreatic cancer eg adenocarcinoma, neuroendocrine, IPMN, acinar or related cancers such as bile duct, cholangiocarcinoma and gallbladder
• people who have been affected by pancreatic cancer in the past.
• people with family history of pancreatic cancer

We would like to make this your page so if you have experiences you would like to share with others (such as the patient who learnt to fly) or tips on how to cope with symptoms, tips for eating, etc please contact us and we will see if we can include it on the web-site.

Lynne, wife of a patient, says "It's been good having the contact with Caroline. We are planning to meet up ........ It seems that Ray & Tony have a lot in common - motorbikes, golf & Spurs - so we should have plenty to talk about. This is an added bonus of your website, to find we are not alone."

Les, patient, said "Although not a medical expert, I am willing to discuss / be contacted by people on any part of my journey to date. Looking back, even finding out from people about 'recovery timelines' would have been helpful."

Julie , patient, said "I read with great interest your article in Cancer Voices. ....I have searched the web for pancreatic support groups and have had no luck. I would really like to join your website and have the chance to share my knowledge of this dreadful illness. I am 60 years old, have 2 children and 9 grandchildren."

Sue, wife of a patient, said " This is the only website I have found dedicated to pancreatic cancer, and although I have found it later rather than sooner, I am very grateful. ......Thank you again and please keep this site going for the relatively few people who will need it. Seven months ago I would never have thought how our lives would change."

Things you may never have expected:

Catherine Markham, specialist nurse at QE Birmingham has told us about the charity Odyssey. Odyssey is a charity which enhances the quality of life for people with cancer through imaginative programmes of challenging and dramatic activities using the outdoors.

Do you have any other recommendations of resources for patients or their families/carers?

Please email us if you wish to join the support network, have experiences you would like to share or suggestions for new activities

Our mailing address is

31 Brooklyn Drive
Emmer Green
Reading
RG4 8SR

or phone Sue Ballard on 0118 9472934

We have just made available our discussion boards at http://www.pancreaticcancer.org.uk/discussion

Jan Mumford from Australia has contacted us with the following message: "I have been involved with a Whipples Support Group in Australia for 8 years. Most of us are located near the Blue Mountains west of Sydney. Where possible we meet with people pre and post Whipples. We have phone or email contact with a number of people Australia wide as there are so few of us. I was wishing to join your support group as link for Australia."

Jan says: " Currently I am 45. I was diagnosed 9 years ago with a carcinoid tumor of the pancreas. At the time my children were 4, 2 and 2 months. The fatigue has been the biggest battle, children aside! I can tolerate most foods, am not a diabetic nor do I need enzymes."

The group includes people who have had Whipple's surgery for adenocarcinoma, neuroendocrine or other cancers or benign tumours as well as those who had pancreatitis.

Please email us if you would like to have contact with Jan and her support group in Australia

report 3rd April 2007: "Barbara Hyatt, (she and her family immigrated from UK and I thought it would be good is have a fellow countryman with me) and myself met with Trace and Joy (Allen from UK) today. Barbara has also had a Whipples so that added to the mix. I think we were very much misguided tour guides! They have taken lots of photos. I feel it is such a valuable experience meeting others who have gone through the same experience. Details may differ but there are similarities, and more importantly the emotions are the same. It is an intense experience for both the patient and carer, different but on the same journey. We also chatted briefly about support groups and advocacy to government about cancer."

Eddie Welsh, Age 53 - Whipples Dec 2005, has contacted us from New Zealand. He says

"Well done for all your efforts with your UK organisation. I found your website very useful. Jan Mumford in Australia gave me your contact details.

In New Zealand we are just trying to get together a group of survivors to form something similar to the "Whipples Warriors" in Sydney Australia. So far we have tracked down 6 survivors just by word of mouth. We will start a more organised attempt to find more interested survivors and their caregivers,partners, friends and relatives.

You may certainly use me as an initial contact person in New Zealand. We are very keen to learn of others who have had the Whipples procedure due to pancreatic cancer or pancreatitis or for what every reason."

Please email us if you would like to have contact with Eddie and his support group in New Zealand.

Eddie's bio tells you more about him , the Sydney "Whipple's Warriors" and the aims of the group in New Zealand

19th November 2007

New Zealand Whipples Warriors Weekend

“Hi everyone, I am exhausted from the weekend but what a great time and a great bunch of people, we had a ball. The weather was typical Blenheim, warm and sunny. Local wineries and other businesses sponsored the weekend so I arrived at our motel unit to find a lovely gift basket full of goodies.

There had been an article in local paper re the weekend get together in Blenheim and several local 'whipplees' contacted the group and one 82 year old (3&half yr survivor!!!) lady joined us for the barbecue dinner on Saturday night.

Saturday we had a day at local wineries, chocolate factory (yum!) and of course lunch even quilters had a special shop to visit and lots of money was spent.

We had a 'Scarbearer Fair' and lined up to show our scars one by one, there were three types depending on where you had your surgery done, upsidedown chevron, backwards L and straight up and down, so very interesting.

I have brought back an information leaflet about the group to distribute at Oncology, Cancer Society and doctors rooms.

We all re-booked at the motel (a rather upmarket motel with two person spa bath in each unit!!!!! Mmmm! LOL) for the same weekend next year and for the year after that will consider alternating with the North Island. The motel owners joined us for barbecue and were judges at the 'Scarbearer Fair' a lovely couple, they also introduced their friend who is a whipples survivor! He has now joined the group.

So a very successful weekend, did I mention that the group found me because I am on the UK PC site and they contacted Sue.

BarbaraNZ “

Also contact us if you want to join a similar group in the UK