I've been meaning to do this segment on my blog for awhile. 'Wonderful Woman Wednesday' where I get to talk to everyday women like you and me, that happen to be doing wonderful and extraordinary things. I couldn't think of a more fabulous person to start with than my own mother.
My mother has always taught me to speak up for the things you believe in (even if they have gone against her own way of thinking). She currently campaigns for more awareness surrounding Pancreatic Cancer and let me question her about it below:
Mum, as you know I've wanted to start featuring 'ordinary women doing wonderful things' on my blog. It seems very natural to start with you. You do a lot of work raising awareness about pancreatic cancer. Can you tell us what your work currently involves and what inspired you to start raising awareness?
We lost our cousin in 2004 to Pancreatic Cancer just 12 days after diagnosis . It was a shock, but then 3 years later we lost Mum's brother to the same disease. It didn't stop there. Mum was diagnosed January 2010 with Pancreatic cancer and died 7 weeks later, March 11th. I couldn't accept that 3 of them could die from a disease that I hadn't heard much about. I started out Fundraising for Pancreatic Cancer UK for better support for patients and to raise awareness. It kind of escalated to me doing some media interviews, public speaking and helping campaign for a debate into funding at Westminster. Being naive I didn't realise health issues in Wales are devolved to Welsh Assembly, so am currently pushing for a debate on Survival Rates and earlier diagnosis with Welsh Assembly
What will a debate on survival rates and earlier diagnosis do for those who are and who will be affected by pancreatic cancer? What problems are there currently with diagnosis? How low are the survival rates after diagnosis at the moment?
Mam: Pancreatic Cancer is currently the deadliest common cancer. The survival rate at 1 year is around 23%, and to 5 years is just 5%. Every hour someone in the UK is diagnosed. The best chance of survival is surgery but....and it is a big but, it takes early diagnosis to have a chance of that....ideally at stage 1 or Stage 2 diagnosis. Unfortunately, due to lack of awareness, people are unlikely to get diagnosed until Stage 4, when the disease has spread to other organs. We need to raise awareness, and also equip our GP'S to recognise symptoms quicker.
What are symptoms to be aware of? Also you mention GP's need to be equipped to recognise symptoms, meaning currently they're being overlooked, do you think people should be straight forward with their GP's and say "look, I have these symptoms, I'm worried it could be PC"
Symptoms include upper abdominal pain just under the rib cage going around right side to back, (roughly where your bra strap is), unexplained weight loss, swollen tum, floating pale and smelly poo, dark urine, jaundice. Obviously some of these symptoms could be something less sinister, such as gallstones or other digestive problems, but the sooner you are checked the better.
For GP'S I think its difficult to diagnose in a 10 minute appointment, especially if the patient doesn't explain all the symptoms they are experiencing. If they are more aware in the first place then yes, asking the GP if it could be pancreas puts them on the right path. Surely it's better to rule out the worse case scenario first?
I completely agree. Since you've started campaigning, what have been your biggest 'wins'?
Being part of the team involved in getting the drug Abraxane approved. Although it only increases life expectancy by an average 2 months, with this disease that is almost doubling the time the patient has. It gives them a chance to put their affairs in order, and to spend precious extra time with loved ones. That and being invited to a garden party at Buckingham palace, where I got to talk to people from other charities at the same time as raising awareness about Pancreatic cancer. For me personally, my "win" is gaining confidence at speaking publicly to Politicians...its something I never thought I would be able to do. I'm no Politician or public speaker. Also, and probably the most important, setting up support groups. A diagnosis of cancer is terrifying. To be able to speak to others in the same position helps so much.
Tell me a bit more about the support groups you've set up.
The first one I helped to set up was on Facebook and we had 6 members after the first week. 7 years on we have almost 3,000, plus sister groups in USA, Scotland, and more recently Wales. I also run a face to face group in Cardiff that meets once a month. Its generally a coffee and a chat. If there is something concerning them about their diagnosis or treatment I put them in touch with Specialist Pancreatic Cancer Nurses. Sometimes it's just a relief for them to talk to a stranger as they worry their "chat" will upset family members.
That sounds really helpful, I remember when Nan was diagnosed and discussing any worries or fears with anyone close made me worried that people would fear I was giving up on her. Is it possible to have the links for the groups so anyone reading can join for support?
What you said about Nan is exactly right. One of the main topics that they struggle with is end of life care... not because they are giving up, but they want to be prepared for whatever comes next. Mam: On Facebook its Families In Support of Pancreatic Cancer Awareness or Team Wales for Pancreatic Cancer. They can also check out support groups in their area via website www.pancreaticcancer.org.uk or email me MrsLinda.firstname.lastname@example.org
What have you found most challenging/frustrating since you started campaigning and how do you ensure it doesn't de-motivate you and what you're fighting for?
It's the same answer every time. When people say its impossible to diagnose. Yes, it's tough to diagnose, tough to treat, but nothing is impossible. The very word itself says I'M POSSIBLE! Breast cancer, prostate cancer - they had low survival rates 40 years ago. They have improved so much with better funding. Breast cancer now has survival rates of 85% plus. That's down to better awareness of symptoms and seeing a GP earlier. Whenever I feel helpless I remember how hard my Mum fought to stay with us, how she campaigned for cancer awareness, animal rights etc and that makes it a no brainer for me. I have 3 amazing daughters, 3 beautiful grandkids. I have to keep fighting for change so that there is a better chance of survival in the future!
To nominate a wonderful woman that the world needs to know about message me - email@example.com
This Is me:
I’m Emma, I train women (Offline and Online) who may struggle with their confidence and self esteem. I believe that women need more options that suit different lifestyles and needs, some of us don't have time to stick to a rigid plan, some people are to scared to even set foot in a gym (I have been there).