If you can imagine always being told that you’ve a rare cancer and you’ve struggled finding anyone with the same thing in the country you live in or information to hand about the best course of treatment or the future prognosis… but then going from feeling isolated to meeting people online but wanting to chat easily about Phyllodes or hug someone who’s in the same boat and THEN being at this Conference with people who are also the same as you with the same rare cancer who laugh in the same way (mostly at Phyllodes 😉 ) and are real and inspiring and alive.
In 30 minutes we start the first of the sessions of the Conference… Agenda
Midday and Team Phyllodes met in the hotel lobby and headed eagerly downstairs to register and discover what the Conference was all about. After completing the inevitable paperwork, we were presented with a bag of Conference goodies… you know a huge bag of books, advertisements, guides and gifts from exhibitors – a mightily heavy bundle it was too (sort of ironic since many attendees would have been advised not to carry heavy bags around!).
We then “lei’d” each other with the appropriate coloured lei to celebrate our survivorship.
White: Diagnosis less than 1 year ago; Green: Diagnosis 1-5 years ago; Purple: Diagnosis 6-9 years ago; Pink: Diagnosis 10 years ago or longer; Orange: Diagnosed with advanced (metastatic) breast cancer; Red: At high risk; Yellow: Caregiver, family member or friend; Blue: Healthcare professional.
This simple colour coding helped us all identify where our fellow survivors were in their journey but also symbolically enabled us to feel part of a much larger support network.
Next was a tour of the Exhibitors Hall. The Hall was filled with charities, support network organisations, research companies and hospitals etc together with corporate exhibitors who sell critical products and provide services to breast cancer survivors such as wigs, cosmetics, underwear, lymphedema sleeves, books and also promotional fund raising goods. During the weekend, I wandered through the Hall many times asking questions of exhibitors, picking up leaflets and information and learning so much by also listening to others asking questions and receiving answers. Once again I was struck by the amount of support and advice available to survivors but also aware that this kind of information is perhaps difficult to source for those without the internet or access to this event in the US.
I thought I had an idea of healthy eating and I thought I knew how to cook healthily but golly I learnt heaps of good tips from this workshop. So, I’m going to tell you it all (or as much as I can) and hope that some of this is useful to you in your everyday life or if you’re reading this as a cancer survivor, this may help you become even healthier to fight the little blighter!
Weight loss – I also learned (or perhaps had confirmed) that weight loss is important – a lot of women diagnosed with cancer are overweight… although it can’t be proven that we wouldn’t have had cancer in any event, I like to think that I can reduce my chances of a recurrence or metastases by reducing my weight – and have more energy into the bargain!
Low fat diet – A low fat diet has many health aspects but for those breast cancer survivors who are PR/ER negative, the medical teams have proven that there is a lower percentage of recurrence for those survivors who have a low fat diet.
Vegetable sprouts rather than the whole veg – ½ cup of the sprouting vegetable = 1.5 cups of whole veg, so try to choose young sprouting veg to get more nutritional benefit.
Reducing inflammation and increasing immune function:
Deeper the colour = higher antioxidant content.
Quercin – found in red onion, cherries, citrus fruit, green tea and red grapes.
Allicin – Garlic contains a good source, so try to incorporate this every day.
Green Tea – Rather than drinking endless cups of green tea, you can cook your vegetables or pasta in green tea to increase your intake of this valuable antioxidant. Also suggested anything cooked with water, add a little green tea!
Water – Drink lots to help flush your system.
Beta-Carotene rich foods – Add some of these to your diet weekly. Good sources are carrots, sweet potato, squash, cantaloupe and mango.
Eat smaller mini meals – particularly when undergoing treatment of any kind… and make sure you include some fat ie avocado, nuts or olive oil.
Reduce – wheat, dairy and sugar
Power foods – Greens, Kale, Sprouts, Onions, Tomato, Pumpkin, Squash, Sweet Potato, Oils, Healthy Fat Fish, Berries, Beans, Garlic, Probiotics, Spices, Herbs, Tea, Cruciferous vegetables, fresh turmeric and fresh ginger – so if you’re feeling like you need some good stuff, try to include a few of these extra in your diet.
Cleanse – Drink lemon and ginger in hot water as an alternative to coffee or tea.
Chocolate – is GOOD for you! Well a little bit and some chocolate. Look at the label and choose only the chocolate with over 60% cocoa content. Also be aware that any labelling mentioning ‘processed with alkali’ or ‘dutch processed’ means all the good stuff has gone from the bar, so avoid. Also avoid if ‘sugar’ is listed before the cocao content… oh and just in case you get carried away, the antioxidant benefits are only if you have no more than 1oz a day! But enjoy.
Nuts – Brazil nuts contain a good source of selenium, Almonds a good source of ‘good fat’ and Walnuts a good source of omega fatty acids. All nutrients that help fight breast cancer, so if you want to nibble, nibble on one of these nuts!
Almond Butter – Instead of peanut butter or normal butter on your bread, use almond butter.
Almond Milk – Make yourself some almond milk and use this in your cooking or with your porridge in the morning.
Greek Yoghurt – Good greek yoghurt is also a good source of protein – and you can get this in a low fat variety too!
Salt – Reduce your salt intake by sometimes swapping the salt (even in your cooking) for a little citrus zest… it tastes the same and is better for you!
Intensify flavours and goodness of some veg – Salt and stand water based vegetables such as tomatoes and cucumber. Water will drain from the veg leaving you with a much more intense flavour in the veg but without losing any goodness.
Pomegranate molasses – Use a pomegranate molasses as a sweetener instead of any sugars. I think in the UK this may only be attainable from health food shops and small specialist food stores but the benefits of pomegranate are huge and of course we’re also reducing our sugar intake!
Cinnamon – Add a pinch or so of cinnamon to your coffee/porridge etc – it’s good for you!
Soy – The controversial subject of soy. If you’ve had soy in your diet your whole life, carry on and increase your intake a little. However if like me, you’ve only dabbled with the odd bit of soy or you have a hormone related cancer, (with care) we’re advised to include no more than 3 soy foods per week to our diet. Miso, edamame and tofu are fabulous sources.
Wine – Hmmmm I didn’t get quite the right answer I wanted… err look at the label and educate yourself about what you’re drinking and ask your oncologist! Red wine is better than white but limited amounts…. errr 4-5oz glass per day. L
So, how to do it:
- Get in to the kitchen and cook
- Read the labels when you’re in the supermarket
- Get fresh food from markets or direct from the farm
- Choose organic where possible however freshness must take precedence
- Skip sugar and keep to natural sugars wherever possible
- Enjoy the food and savour the tastes
- Eat slower
- Read up and take advice. Some websites at the top of this entry too.
Nutritional Rules to Live by:
- Come back to earth and think about what you’re eating.
- Eat breakfast.
- Eat smaller portions.
- Stay hydrated.
- Include a lean protein to your diet (beans or nuts).
- Choose foods rich in fibre.
- Look at your food first and then add supplements to your diet, if needed and advised.
- Talk to someone knowledgeable about integrating the right foods with any medication.
- Colour your plate… remember a good colouring means you’re getting different nutrients.
- Get rest.
I hope you find the above as interesting as I did… oh and there’s recipes and tips on their websites too.
Late afternoon we were gathered around the pool for the survivors’ group photos. The first photo was for all survivors. There were over 900 participants at the Conference – it still shocks me that there are so many of us affected by cancer and more to the point, that all attendees were ‘young’ ie under 45 years of age. I know that so many people say that disease and illness doesn’t care about your age, sexuality or the colour of your skin but it sucks! There were ‘children’ amongst us – teenage girls should be excited about their new buds growing and making them into beautiful young women, NOT finding out they have breast cancer. BUT we stood, side by side, giggling and laughing, shuffling into position, supporting each other and chatting amongst ourselves whilst those of us in the front row also tried desperately not to fall into the pool!
There was also an ‘international attendee’ photograph taken. I represented the UK whilst 7 others made up the international group from Brazil, Germany, Turkey and Canada.
Hard Rock Cafe
We decided to head out to the Hard Rock Cafe for a drink before joining another 85 participants for dinner at the Hard Rock. Team Phyllodes (and honorary guests) tucked into a cocktail or two and before long we needed dinner…. and the other 85 or so weren’t yet there! Ooops we dined in our group – hey the prosthetic boob had been bought out and the wigs were off – much to the sniggers of our group and horror of other drinkers, we needed to eat! You know what though, the horrorified looks came from a group of balding men behind us when a wig was removed… well that was until we pointed out that at least our sista’s hair would grow back! OK so we all ended up friends in the bar but for a few seconds I realised that you really can embarrass an American man!
PJ Party with Pure Romance
Yes you read correctly, a pyjama party with adult toys! Here goes, I may as well shock you all a little more… first I mentioned the C word out LOUD (errr that’s Cancer!) and now I’ve mentioned adult toys!
We all got changed into our nightwear (me in an all-in-one) sleepsuit that I’d had made with my cancer forum name on it) and went downstairs to one of the bigger conference rooms. For many this may seem trite and silly but by having a good ‘slightly outrageous’ fun time hosted by Pure Romance on the stage, many attendees were able to talk freely about the side affects of chemo, radiation and surgery on their young bodies. Imagine going through or being post-menopause at the age of 24. Imagine a relationship where you don’t want to be seen or feel inadequate due to the side affects. Although most survivors need intimacy more than the sexual act itself, it’s often hard to communicate this to partners and some relationships are strained or breakdown because of this.
By making light of the situation, giggling and laughing with fellow survivors and understanding that actually what you’re going through is quite normal. There ARE ways of moving forward and retaining that intimacy by finding a way to talk, feel and also by using products and toys.. but without any prudishness. Hey and it’s not all about the man having to have be an owner operator for a long while!
I’ll leave you, for today, with a quote from the Conference that sums up just how much attending this Conference and being with fellow survivors (in particular Jenny and Team Phyllodes) has meant to me…
“If ever there is tomorrow when we’re not together… there is something you must always remember… you are braver than you believe, stronger than you seem, and smarter than you think… but the most important thing is, even if we’re apart… I’ll always be with you” (Winnie the Pooh).