Tuesday, 6 March 2018


It's March already! How did that happen?

I can honestly say that February was a waste of time for me. From beginning to end the whole month was non productive and disorganised. For example, I gave my niece her birthday present on the 3rd of March. Her birthday was the 10th of February. I'm never like that!

One thing I did achieve was a plastic surgeon visit for a lumps evaluation. For those unfamiliar with Cowden's, we can grow many, many nodules, tumours, lumps. On the whole thank God most will be benign, but you just never know when one won't be, so checking is good. I did try the ignoring trick once, but as I flippantly asked my GP to confirm it was nothing to worry about, I could tell by her face that it was serious. That lump I was going to ignore was a breast cancer.

So, fuelled by that experience I really struggle as in reality I can't have every lump removed. If there was a grade given for ability to grow lumps, I'd receive an A+ so it's near on impossible to remove all. The latest culprits are on my arm, stomach and knee. The one on my arm is large and unsightly and I have no doubt it will grow back, but its going and will be replaced by a scar which will fade nicely.

My stomach has long been a problem for growths and thankfully I'm not a bikini wearing babe, otherwise I'd look gross. Most of the growths on my stomach are nodules or black in colour so I don't think twice about them being removed. Black is never good in my mind. The plastic surgeon is pretty sure that black or not, they're benign. But, how can you be sure and can you just ignore something black growing on you? Nope!

The knee one is quite a surprise. I'd been feeling a stinging area on the side of my knee for quite some time, but never associated it with a lump till recently. I should have twigged because 40 years ago, my first lump was in exactly the same place on the other knee. Did I just write 40 years??? Wow 😳.

So, that's the lumpy roll call. My general advice to people who find any lump on their body is to get a GP to check it out. Most lumps are nothing, but only someone qualified can start the process to confirm this. If it worries you, ask for it to be removed. No use stressing about something so fixable.

On other news, I would like to thank ABC country radio for inviting me on their radio programme on rare diseases day, to speak about living with a rare disease. It was a real privilege and they let me talk for ten whole minutes. So happy to be able to advocate for my condition. Ashton also gave it a red hot go. Her post was shared many times and read by thousands. Thumbs down while we're at it to online agencies who ignore such pieces, in favour of perpetuating rubbish events currently in the media. We only wanted one article on one day! It wasn't a big ask. Advocacy is a never ending struggle.

Have a great week. Till next time


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