Cancer will affect almost all of us in some way during our lives and therefore we want to remind people that there are so many fantastic resources available, aiming to educate and support. When researching this topic, we found that both cancer patients and survivors commonly used two words to describe how they felt after being diagnosed and during their treatment: isolated and alone. This was made much worse after the pandemic hit last year. Not only have the events of the last year made it difficult for patients to get the medical help they need, support groups and resources have been limited.
We want to shine a light on just three of the many wonderful people in the world who offer valuable services and advice to those dealing with cancer. Today we have three inspiring cancer survivors who have set up their own business and organisations, helping patients navigate their way through their cancer journey. These amazing women are here to steer you through the hair loss, mindset and nutrition aspects of your cancer journey.
Alexandra Stewart of Centre For Cancer Nutrition
Alexandra Stewart is a public speaker, author, app creator, award winning specialty food manufacturer, dragon boater and breast cancer survivor. Alyx has taken her experiences through breast cancer to improve the journey of others going through a cancer diagnosis.
Alyx suffered with treatment-related malnutrition when she was having her chemotherapy and developed Kee-moh Snacks because of her experience.
Kee-moh Snacks, now Centre For Cancer Nutrition is the go-to hub for everything cancer nutrition related - recipes, information and resources for those with eating difficulties due to cancer treatment and where carers can find information and support too.
Thanks for joining us Alyx. Could you tell us how you started your business?
I actually learned a lot from my cancer, my reactions to it, others reactions to it and me, and how I moved through it.
It was that horrendous journey that lead me to see that many, many people have very similar experiences and frustrations while going through cancer treatment.
Both my parents have had their own cancer journey since mine. My mother survived hers, my father did not.
My father struggled with food like I did and like many others. Side-effects can limit eating so much that it can lead to malnutrition. This leaves the body less able to fight a good fight. My father ate only morsels and I ate a very restricted diet when I could. In fact, when I could eat I only ate lamb, garlic, the freshest white bread and jam. And that was my entire diet for months. This was something I wanted help others with.
Since looking into this issue, having had personal experience with it and making it my life’s work, I have seen a pattern. So many of us are grieving the loss of a normal life and are overwhelmed. The roller coaster that comes with a diagnosis can make it impossible to find a way through eating difficulties as well. I was there! Pain and fatigue (physical and emotional) are like wearing blinkers. It is easier to give up (not a criticism) because continually experimenting with food is simply too tiring. Not eating is often, the only option. The thought of others going through this suffering just breaks my heart and it was from this angle of empathy that I started in this business.
How does cancer nutrition or eating habits differ from mainstream nutrition?
Hands up if you think it is normal or expected to lose weight during cancer treatment? My hand is high in the air. At least it was when I was having my treatment and shedding weight like a melting ice cube. It’s not normal or expected to lose weight during treatment of most cancers. Who knew, right?
The treatment of cancer or the cancer itself places extra demands on the body. The body require more energy to deal with these demands. Without being able to maintain good nutrition, muscles begin to waste away reducing strength, weight declines and energy levels decrease.
Hundreds of studies worldwide have been conducted on the effects of not being able to maintain nutrition during treatment and the effect that has on treatment outcomes and quality of life. I’m going to throw a random word in here and it’s a word we generally don’t associate with developed countries. It’s malnutrition. A summary of the studies mentioned say up to 80% of people will have some form of malnutrition during their cancer treatment.
Maintaining our bodies nutritional needs and weight has been found to have positive effects on treatment outcomes and quality of life. It has also been found that it can reduce the severity of side-effects and hospital stays. Pretty important stuff.
Why do so many people become malnourished? Mostly it is due to the side-effects from treatment limiting the ability to eat and take in food. My arch-nemeses were mouth sores, nausea and vomiting. Taste changes, dry mouth and throat, constipation, lack of energy, difficulty swallowing and many more affect how we eat, what we eat and our enjoyment of food. I couldn’t find a way past eating fresh soft white bread and jam - the only combination of food that agreed with my side-effects.
Good nutrition will aid the management of side-effects from treatment, speed up recovery, assist with wound healing and rebuilding of tissue (especially important after surgery, chemotherapy, radiotherapy and other treatments, improves the body’s immune system and ability to fight off infections, and can reduce the risk of the cancer returning.
How do you work with people and what are the benefits for your clients?
Lots of people are aware there are many side-effects of cancer, the most obvious of which can be hair loss.
Some side-effects, like a dry mouth have you feeling like you are eating the dessert so these people need hydrating and moist foods. Some have a very sore mouth so they need soft gentle food.
What our range of recipes and recipe books does is address the difficulties of eating associated with chemo side-effects so that malnutrition isn’t something people have to endure along with their cancer treatment.
The big benefits for cancer patients are being able to enjoy their favourite foods just by making small tweaks to the ingredients or the cooking process. These seemingly small things can bring a sense of normality back to their lives and a glimmer of hope that all will be okay.
What services do you offer and where can we find you?
I do cooking demonstrations and meal making online often via Zoom and on social media. Our videos (on the website and on our Youtube channel) and recipe pages are full of different recipes where I show people exactly how to tweak, adapt and modify recipes and foods to suit their side-effects. The website is the hub of our recipes and other resources. We also have three recipe books available.
Centre For Cancer Nutrition can be found at www.centreforcancernutrition.com
Facebook is @centreforcancernutrition
Instagram is @centre_for_cancer_nutrition
YouTube we are Kee-moh Snacks (after the name of our recipe book range).
Any inspiring words you would like to add…
When we lose our enjoyment of food, we lose our connection with family and friends because we can no longer participate in the sharing of a meal together. Food is the same as love and joy - we use food to celebrate and to console. Without it, there is loneliness and isolation. Let’s not go there. Without cancer I would not have found my purpose and I am grateful every day that I get up and make a difference in someone else’s life.
Gillian Coutts of Potential Project
Gillian is a mindset genius! Gillian Coutts' Youtube channel is full of motivational content to encourage you to maximise your potential and live a better life!
I work with leaders and their teams around the world, supporting them to develop calmer clearer minds to navigate the uncertainties and opportunities of work and life. As the Australian country director with Potential Project, we are all about enabling a more human world of work, and support people to maximise their potential for impact and well-being.
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But I didn’t always do this. In 2010 I had my son, James, while I was juggling a busy role as Head of Operations at Sheridan (the gorgeous homewares company). The week I came back to work from maternity leave, I was diagnosed with breast cancer. It was a shock to the system on so many fronts. I thought becoming a parent was enough of a slap for a perfectionistic over-achiever – but the cancer journey – and the treatment - was so much worse.
So as I finished treatment mid 2011 I started to think about “what next”.
I decided the gift I wanted to give myself from having cancer was permission to do whatever it was that was going to make me happy, that my heart desired. To take on whatever job, whatever that meant that would make me happy. To make the change, I needed to change.
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So the next twelve weeks saw me getting super excited at the start of the week about a possible new career. Medicine. Psychology. Research. NFP leadership…. I even enrolled in another degree. But by the end of each week I’d picked holes in every idea, and completely lost faith. I was becoming more and more miserable. Practical things like “I’m the primary bread winner” got in the way, and nothing felt quite right to justify the hardship it would cause for the family.
Reality called and I just had to make my current work “work”. So I tried a different slant – what if making meaning about this experience wasn’t about what do I want to do, but how could I be? If I was going to die in a year’s time, hypothetically, what would I need to have done today to say I’d really lived differently as a result of this experience? And I eventually decided to experiment with three things that felt meaningful to me.
- To get down on the ground and play with my son for 30 minutes a day. By now he was 2 years old, and I wanted to find 30 minutes to just be with him, regardless of how high the washing pile was.
- Plan to do something that brought me joy and made me curious everyday. Just see what showed up. Play with that.
- To start to mediate.
So I’m back at work, juggling, and within a year I’m made redundant. And with that, having always worked for someone else, been a good company woman, I thought, what if I didn’t jump straight into a new role? What if I experimented with some of these things that bring me joy and curiosity?
What if for two years, I didn’t take any full time job. What if i set up an experiment, a mega project, to only work with people I loved, doing things I enjoyed? And just see what happens next?
So that was it. Along with a number of other things like board roles and consulting, I started working with the Potential Project – what I now know as a “portfolio career”. Bless. Over time my work with organisations and their teams around mindfulness and compassion has become the most satisfying part of my work.
One of the most joyful things I’ve done is create a bespoke program for executive women returning to work post cancer, based on the work of Potential Project. I’ve always been really interested in human development and had done study in sports psychology and counselling in my early 30s. So to be able to practically be of benefit to people – to support them to find pathways to move to post traumatic growth (rather than staying in dis-stress) has been truly a career highlight.
So what are some of the tips I’d have on navigating life trauma like cancer?
- Go easy on yourself. It’s so much easier said than done, but think of it like training. Each time you do it, the muscles get stronger.
- It will probably take a few years to return to what feels like a “new normal”. Depending on your treatment, the physical – and mental - aftershocks can be many and varied. It takes the time it takes to navigate them. Patience and acceptance are really the only strategies to avoid making a tough situation any worse (particularly by the way you think about it). And they are skills that will repay you one hundred times over for the rest of your life.
- Focus on the things that bring you joy and a sense of meaning. Even if it’s just for a few minutes a day. Small practical habits like keeping a gratitude journal add up over time and can teach you more about yourself.
- Don’t be afraid to get help. Learning to ask for and receive help is another skill that will make a big difference for the rest of your life.
Cancer has taught me that we are all dealing with some sort of challenges in our life. Once you start to recognise this, everything looks a little different. And the only logical response is kindness and compassion – for yourself and those around you. To be of service, put the offer out there, and see what happens next.
Resources to take a look at:
- One Second Ahead – a book we’ve written published by PanMacMillan. Rather than being on autopilot and reacting to everything going on, how to find and keep that space between stimulus and response – that moment of freedom and choice.
- The Mind of the Leader – a book published by Harvard Business Review Press. Tools to lead with a strong back and an open heart through mindfulness, selflessness and compassion.
- Self-Compassion with Kristin Neff - https://self-compassion.org.
You can reach me through:
Twitter - @GillianTPP
Cris of HeadWrappers
HeadWrappers is a registered UK charity and provides support for anyone suffering from hair loss as a result of cancer treatment. They offer group sessions (virtually at present) and present scarf tying tutorials, provide scalp and hair advice for before, during and after chemotherapy treatment, profile some key items of specialised headwear including hair pieces and signpost to other support organisations. All clients receive a free goodie bag prior to the session which includes a square scarf, corresponding tie, woollen hat and headband, pre-tied scarf, sleep cap and a wig cap.
We love your head wraps Cris! How did you get started in your business?
The three trustees met whilst delivering the Headstrong service for Breast Cancer Care (now Breast Cancer Now). When BCC withdrew the service we decided it was too important and we wanted to continue to offer support and we created HeadWrappers.
What are some of the hair loss options available to cancer patients who are suffering from hair loss?
We show people how to tie a one metre square cotton scarf in three different easy styles and demonstrate how to tie other sizes of scarves and different fabrics. We signpost to specialised suppliers and demonstrate key items of headwear such as a base hat or pre-tied scarf and give ideas on how to embellish those items. We also demonstrate with hair pieces, and fringes.
How do you work with people and what are the benefits for your clients?
We currently offer virtual Zoom sessions but prior to Covid-19 we hosted face to face sessions in London and the South East at a number of cancer support centres and hospitals. Virtual sessions have enabled us to reach ladies UK wide and we will continue to support those areas when we are able to revert to face to face support. The benefits to our clients are increased confidence and the provision of support from others who have or are experiencing hair loss.
What services do you offer and where can we find you?
We provide support sessions in a group scenario or one to one if required. We provide a free goodie bag to all clients. We are also hosting fortnightly Tea Top Knots & Turbans virtual informal chatty sessions which provide a secure support environment for anyone to share their experience and chat with others and receive or give hints and tips. We also have a guest speaker for each session.
Facebook – HeadWrappers
Instagram – HeadWrappers2016
Website – www.headwrappers.org
We'd like to say a massive thank you to Alyx, Gillian and Cris for sharing their stories with us and for their commitment to offering valuable help and support! Happy Cancer Survivor Day!