Today, I answered a question honestly for the first time in a very long time. It felt… good, actually. 

I’ve purposely taken that out of context because I really want you to keep reading. Clickbait and all that. 

The question I’m actually referring to isn’t just a question. It’s the question. The one people like me get ALL THE TIME. It goes something along the lines of: “What have you done to your arm?” There are variations on this of course, including, but certainly not limited to: ‘What have you done to yourself?”, “Why do you wear that?”, and, my personal favourite: “What’s with the… [hand gestures in the direction of my swollen arm in a compression garment]?” 

I’m not going to make you read the whole article to tell you that I suffer from a condition called Lymphoedema. For the etymological nerds out there it’s ‘lymph’ (lymphatic fluid) + ‘oedema’ (swelling). Put simply, I have swelling caused by damage to my lymphatic system. You can be born with lymphoedema or, like me, you can get it through damage to your lymphatic system. Like many other cancer survivors, mine was a result of my (very necessary) treatment. Lymphoedema is not life threatening, but it is chronic and there is no cure. 

So why don’t I answer honestly? Partly because people aren’t really that interested in the answer (unless it comes with a good story), partly because people’s eyes glaze over with the explanation (because it isn’t that much of a story) and partly because it’s really none of their business. 

Any person with a disability or impairment, particularly a lesser known one, will tell you that it’s exhausting having to explain your condition to people who often ask just out of curiosity. Remember, for people with lymphoedema they’re likely to be sore or uncomfortable, extremely hot in a compression garment that is literally designed to squeeze fluid out of your body part, and more than a little self-conscious, especially if they were asked about it because someone saw that one limb was larger than the other. 

The reason I chose to answer that question honestly this time is because it’s World Lymphoedema Awareness Month. I’m doing my bit to raise awareness (even if it takes the fun out of the question!) and money. Despite lymphoedema affecting approximately 20% of cancer patients (the numbers are much higher for some cancer types), there are many barriers to accessing treatment. With some areas having no publicly funded services, and with no Medicare item number, some people only get specialist help when their condition has deteriorated to the point of needing emergency treatment. $100,000 is needed for a dedicated helpline, so everyone affected by lymphoedema can access compassionate, reliable and professional support.  

Please donate if you can. If you can’t, then look out for the landmarks that will be lit up in blue in March and post your pics with #shinealight Or, at the very least, you can email me your wittiest response to ‘what have you done to your arm?’ I’ve done the ‘offensive tattoo’ excuse to death, and I could do with the entertainment. 

To donate, please visit: https://www.mycause.com.au/p/340165/lymphoedema-support-phone-line

10 awesome benefits of having lymphoedema

The no.1 benefit to having lymphoedema is…
  Since March the 6th is World Lymphoedema Day, I thought I’d celebrate by sharing with you the top 10 benefits of having lymphoedema. Yes, it’s a different sort of list, but it’s our ‘day’, so we may as well bring our party attitude.
  1. 10. Meeting new people
Because I have lymphoedema, I get to meet new people all the time. Sure, they may be nosy shop assistants or random strangers asking ‘what have you done to yourself?’ but not a day goes by when I don’t get to speak to a fellow human being. It’s great if you want to practise any social skills like restraint, biting your tongue and giving people the benefit of the doubt.
  1. 9. Being a voice for change
Usually, I’m the voice for a change… in temperature. Sometimes it’s a simple as saying ‘Could we please turn up the air conditioning?’ or sometimes it’s more complex, like orchestrating a shift in large groups of people, to get me to the chair near the door/fan/open window.
  1. 8. Opportunities for work experience
In the area where I live, there are no publicly funded lymphoedema services. None at all. So if you don’t have the means to pay for treatment, you don’t get any treatment. And this isn’t unique to my area. We need to get out there and be lobbyists, activists and representatives. Excellent skill development.
  1. 7. Life-long pampering
Not many people with chronic conditions are lucky enough to be prescribed massage. Well we are, and I hope you’re all grateful for this. I don’t want anyone complaining about how expensive it is, or how we don’t even have a Medicare number for this. I just want you to lie back and enjoy the experience. It won’t get any knots out of your neck, and you will have to follow it up by squeezing back into that compression garment, but hey, you got your ‘me time.’
  1. 6. Soft as a baby’s bottom
Don’t you love the end of the day when you can rip off the compression garment and feel the cool air on your affected limb? Haven’t you noticed how soft and smooth your skin is? It’s definitely worth the thousands of dollars you pay each year in compression garments. And it comes with a bonus feature of SPF 100+ so you’re sun safe too.
  1. 5. You, and all the other elite athletes
Everyone’s seen sportspeople on TV but no one’s ever seem someone with lymphoedema on TV, so how are they to know the difference? Use it to your advantage and lie through your teeth. Next time someone you don’t know asks what the compression garment is for, look them straight in the eye and tell them you’re an athlete. Not everyone looks like Serena Williams; you could be a medallist for curling for all they know, so say it and own it.
  1. 4. Legitimise your concerns
Your concerns are legitimate and you can act on them. It IS bloody hot in that and even more so when it IS bloody hot. You deserve to get the seat next to the aircon, skip the queue for gelato or doing anything else that’s going to get you cold stuff in hot weather.
  1. 3. Provide social commentary
In other words, whinge if you want to. You’re justified. You’d have to be pretty thick skinned – no offence – to not be bothered by the constant comments.  If some idiot wants to say something that confirms their idiot-status, then feel free to recount the conversation endlessly. Embrace the outrage. It’s impossible to educate every man and his dog about your condition, and you certainly don’t want to waste your breath on someone who was really only ‘making conversation’.
  1. 2. Pool your resources
Or make the pool your resource. Better still, if you have flexible working arrangements, ask your manager if you can work poolside. Swimming has enormous therapeutical benefits for lymphoedema. Not only is it exercise, but it’s cooling and the gentle pressure of the water mirrors the gentle pressure of a lymphatic drainage massage. What? You’re having trouble fitting in a regular swim with your other medical appointments, your self-care routines, and your work and family commitments? Well, maybe that’s your own fault for not having a pool at home. And here it is [drumroll please], the top of the list, the ultimate advantage to having lymphoedema.
  1. 1. You’ve got drive
No sarcasm here. When everyone else is playing ‘hot potato’ with their steering wheel in this hot, hot weather, a little tug of my compression sleeve and I’m cruising like a boss.

See Yvonne on SBS News

Yvonne was asked by SBS news to comment on a new study that looks into whether chemo is necessary for all early-stage breast cancer patients. Take a look… https://www.sbs.com.au/news/many-can-skip-breast-cancer-chemo-study  

Blogs and webinars

It’s been a busy few weeks for me and One Piece of Advice. I was delighted to be asked to speak on a Cancer Council NSW webinar on supporting someone after treatment has finished. I jotted down some thoughts after the webinar too. You can read my blog post by clicking this link (which will also take you to a recorded version of the webinar): http://www.cancercouncil.com.au/blog/tips-from-a-cancer-survivor/ I was also thrilled to be a guest blogger for ‘Boob in a Box’. You can read my ‘Fertility Friday’ thoughts here: https://boobinabox.net/2016/08/12/fertility-friday-complicated/

Lymphoedema blog posts

Did you know I was a guest blogger for the Iced Tea Party this year? If you didn’t follow my blog posts at icedteaparty.com.au then you can read them here. http://www.icedteaparty.com.au/patient-stories/lymphoedema-right-pain-arm/ http://www.icedteaparty.com.au/patient-stories/arm-lymphoedema-one-arm-three-stories/ http://www.icedteaparty.com.au/patient-stories/yvonne-hughes/kathy-bates-lymphoedema-poster-child/ http://www.icedteaparty.com.au/patient-stories/yvonne-hughes/cancers-hidden-aftermath-still-hidden/ http://www.icedteaparty.com.au/patient-stories/banding-together-lymphoedema-awareness/ http://www.icedteaparty.com.au/patient-stories/so-what-next-for-lymphoedema-treatment/

My thoughts on Belle Gibson…

Here’s an article I wrote for news.com.au on why I’m both angry and sad at this very shocking situation. http://www.news.com.au/lifestyle/health/i-know-people-will-be-shocked-by-belle-gibsons-story-but-im-angry/story-fneuzlbd-1227315846186