Living With and Beyond Cancer MIG (Members’ Interest Group)
(Photo) MIG Secretary Rachael Morgan-Lovatt and MIG Chair/UKONS President Elect Emma Sweeney with UKONS President Richard Henry
Welcome to our Living With And Beyond Cancer Members' Interest Group (LWABC MIG)
Our aim is to facilitate UKONS members in accessing relevant and up to date information regarding services within the field of living with and beyond cancer to support people diagnosed with cancer, their family, friends and carers.
Your MIG officers are UKONS Board Members Emma Sweeney (MIG Chair/UKONS President Elect), Rachael Morgan-Lovatt (MIG Secretary) and Gillian Knight (MIG Officer).
Our objectives are to:
- Develop an up to date document repository of information including links to services for those living with and beyond cancer
- Engage with UKONS members regarding the content of the above and share best practice
- Engage with the relevant activities of the Cancer Nursing Partnership (CNP)
Each quarter we plan to update “the spotlight on” section with one of the many possible consequences of cancer or service providers. Five key prepared questions will be asked of an expert in the area. In addition to sharing information we will provide a literature review and relevant links to support the topic. When appropriate we will also present vignettes from practice.
We will be asking our chosen expert the following five questions:
- Could you tell us why you do what you do?
- Could you sum up your role/charity mission?
- If you could make one change to improve people’s experience of cancer services what would it be?
- Who inspires you?
- What would you say to your younger self starting out?
We will provide links to previous spotlight organisations HERE.
Finally, we look forward to working with you all!
Emma, Rachael & Gillian.
To join the Living With and Beyond Cancer MIG, please click HERE and complete the online form.
Spotlight 5: www.cookforyourlife.org
Cook For Your Life started in 2007 after founder, Ann Ogden, was in treatment for her second cancer diagnosis, triple negative breast cancer. Ann took a break from her successful career in fashion to focus on her treatment. Suddenly immersed in the world of hospitals and cancer treatment, she became aware of how little her chemo buddies knew about healthy food. Growing up with an Italian mother from a family of chefs and a father who was a Master Baker she was easily able to adapt recipes to help her cope with side effects and eat well even on the worst days. But for her treatment friends it was a different story. She started giving cooking tips and advice, which eventually led to her first free hands-on cooking class.
1. Could you tell us why you do what you do?
In our society of convenient, highly processed foods, building a connection with real foods and becoming comfortable with cooking them is important to our health on a fundamental level. Unfortunately when it comes to our health, we are what we eat. Obesity drags many health problems in it’s wake, include a higher risk for certain cancers. The World Cancer Research Fund estimates that around one third of common cancers could be prevented by leading a healthy lifestyle, including how we eat. We know that in the UK only one in four adults eat the recommended ‘5 a day’, so we know that there is a lot of work to be done to help the public achieve the recommended targets.
2. Could you sum up your role/charity mission?
Our mission is to teach healthy cooking to people touched by cancer. We explore ways to make healthy cooking and eating easier for cancer patients and caregivers during treatment and for survivors post-treatment, as eating a healthy diet is recommended by organizations such as the World Cancer Research Fund as the best way of reducing the risk of recurrence. We demo healthy cooking at conferences and have served nearly 10,000 through free in-person cooking programs, and help 150,000 people a month through our free recipe and cooking website. Starting in June, we will be offering free online cooking classes to our users.
What makes us different?
We are an organization that's more into dietary information translation than nutrition, by that I mean that we offer practical advice to cancer patients and caregivers that will give them the tools to transform clinical diets or scientifically backed nutrition guidelines, like that of the World Cancer Research Fund, into tasty meals.
When I was going through my own treatment, through listening to patients talking at support groups or during chemo I realized that just getting dietary advice wasn't enough, the 'how to' was missing. This is what Cook for Your Life has to offer. We started off with free hands-on cooking classes using easy recipes to show patients and caregivers how to cook more healthily and how to incorporate healthy ingredients like dark leafy greens, beans and whole grains into their meals. These classes have morphed into online cooking videos and tutorials that make what we offer more scalable. We also incorporate practical skills that go alongside cooking- for example, we show participants how to freeze and defrost leftovers to reduce food waste and save money. We know the importance of this from our previous study working with low socioeconomic groups in New York, where some of our participants were earning less than $15,000 per year. Our recipes and lessons are practical, and we want to show that healthy eating doesn’t have to be expensive, difficult or tasteless!
On our subscription free website we have developed a search tool that lets users find recipes and cooking videos to help them cope with narrow regimens like low fiber diets, and also to make broader propositions like healthy survivorship easier to act on. We are also not into 'isms'. Beyond promoting plant based eating in the broadest sense, we do not advocate any particular lifestyle or dietary choice. All are welcome. Both meat eaters and vegans can find delicious, easy recipes to suit their needs on our site. We also take the same attitude towards cancer. We are not a cancer specific site, and aim to serve and be of use to as many in the cancer community as we can.
3. If you could make one change to improve people's experience of cancer services what would it be?
Cancer patients can or are at risk of losing personal control during treatment, and need as much help as possible to find support during the process, and at no cost. So many patients suffer financially during cancer treatment that the free services on offer become lifesavers. Sadly beyond support groups, many of these free services are restricted to certain cancers, like breast cancer. I would like to see these restrictions lifted.
4. Who inspires you?
The patients, caregivers and survivors we work with, and the multi disciplinary teams and organizations that care for them.
5. What would you say to your younger self starting out?
Mostly that life is not a straight line and you never know where you’ll end up, or what you’ll be doing in the years ahead. My own life has proved to be a succession of different self re-inventions that have led me to where I am now. None were consciously planned. In retrospect all just melted one into the other, although of course it did not feel that way at the time. I would tell my younger self the importance of being a survivor, to not give up or despair but to keep going regardless. The one thing we can all be sure of is that things change, and that when those changes might not at first seem for the best they can in fact have silver linings.
Our mid to long term ambitions:
Mid-term, we are expanding our mission online. In the 10 years since our launch we have served nearly 10K people in person; however since we launched our website 5 years ago, we have served over 3 million online, and increased our audience to upwards of 160,000 per month. This has given us an opportunity to teach more people by offering the same classes in an online format. Our online classes will launch in early summer and will be accessible worldwide. We know our second largest group of site visitors are from the UK, so we hope that our online classes will educate these users from the comfort of their homes. I am from Brighton originally, so it has always been a goal of mine to have our Cookbook published in the UK also, and this is now available HERE
We also have a long working relationship with the Hispanic community in the New York area, which has led to an ongoing NIH funded collaboration with Columbia University working with underserved Hispanic breast cancer survivors. We have been working on a version of our site in Spanish, which will launch this fall. The work we are doing with Columbia will allow us to test the effectiveness of reaching out to these communities online. In the long term our goal is to become the #1 resource for recipes and cooking solutions for the cancer community, including their medical teams. We plan to expand our working collaborations with other cancer organizations and hospitals to put our wide experience to work for all.