Friday, 14 February 2014

Embarrassing bodies ~ the hospital - I'm not showing you my butt edition !

I've spent the last 3 days in hospital recovering from surgery for my embarrassing body.  I had three soft tissue tumours removed related to a genetic condition I suffer from ; not related to Breast cancer.

I am not talking specifically about the TV program "Embarrassing Bodies" which aims to dispel myths surrounding medical conditions deemed to be ‘embarrassing’ - many people laugh at the very idea that people would be prepared to go on TV and yet choose not to see their regular doctors.

I do like that EB demonstrates that there’s no need to feel ashamed because actually, we’re all the same ! or are we ?

There is quite an element of shock value in the show's production , and I am sure they genuinely do help some people with visually shocking and personally mortifying conditions where they have failed to receive help elsewhere. 

It still bothers me. 
The ridicule factor.

I have a very embarrassing body. I didn't know why - for half of my life - I had strange little lumps and cafe au lait spots aka birthmarks (see the brown birthmark next to my dressing). I wrote about it - Neurofibromatosis NF - here and how I discovered the cause of my embarrassing body. I was bullied at school , ridiculed and felt the stares of strangers. 

Last May, I saw a local surgeon to have a large neurofibroma (soft tissue tumour) deep in my inner thigh , removed. He wouldn't do the surgery because it was complex and advised me to see a specialist in Sydney.

The consensus is to leave lumps alone unless they cause pressure/pain or other damage by structure /organ or nerve compression or malignancy . I waited till I saw the surgical oncologist (Breast Cancer surgeon) in January and he agreed to do it - 3 weeks later (ie last Wednesday). I was starting to get increasingly sharper pains in my lower leg and ankles, numbness plus a pulling sensation when I walked /ran or moved in any way. I am unsure how much of that will change but at least it won't get worse.

The Surgeon told me before surgery he would have to make a large incision to identify where the nerves, veins and arteries originated. The tumour was about fist sized and growing on a superficial nerve. Thankfully, there was no muscle involvement , so he could move the muscles aside and not cut them. I wasn't surprised at the length of the incision. I'm hoping it means a shorter recovery and back to running sooner.

I also decided it was time to have two other smaller tumours removed , located at the top of my right and left buttocks. I have always been embarrassed with people seeing my 'butt ugly butt'...a morbid fear of accidentally showing my 'plumber's crack'.

Haha - how many people see your bum you ask ? - Change rooms for one and well mainly health professionals and over the years when I've been in hospital I was asked about them. 
"Oh , what's that " "what are they ?"
They were slow growing but (no pun intended) getting bigger. I was also getting pinched on the bottom by the brutal hinge crack between the toilet seat and lid when I sat .

Daily , I struggle with the cosmetic side of NF because I have thousands (not an exaggeration) of small nodules/skin tumours/ ugly bumps & soft lumps and freckling (skin pigmentation). My body seems hideous to me at times; clothes cover up most of the uglyness.There are other people very significantly affected by Neurofibromatosis so I don't whinge  much !

I have small soft lumps on my face,  more noticeably and others surfacing . Click here to see a picture of elderly woman's back severe NF 'skin'. There is a huge range of severity and manifestations even within the one family and it varies from individual to individual. (They call it variable expressivity).  

Maybe , one day I will have further surgery for the facial lumps. I had the thigh tumour removed because it was causing discomfort and pain not embarrassing. It was mostly unseen though it did protrude slightly when I stood in profile. I'll have an awesome battle scar now.

In Australia - the Children's Tumour foundation is a non-profit ,charitable organisation that brings  hope , awareness and education about Neurofibromatoses. They struggle to get to the mainstream media. Sunday was the Cupid's Undie Run. (Cupid’s Undie Run is a kilometre-and-a-half (ish) run in your bedroom-best on Valentine’s weekend)

I was paddling or else I would have done the Undie run my running kit mind you !

The Children's Tumour foundation aim to better connect those afflicted with helpful resources to lead more productive and satisfying lives.They give support and offer hope.

I know whatever challenges come my way I have the ability to meet them, my embarrassing body doesn't define me. On a day that beauty and love make the world go round I wanted to share that I know God loves me as myself and so I should love myself too.

I need to let that inner love and self acceptance spill over and not worry what others think of me.

Anyway, I am recovering well, my butt is the sorest bit and my leg when I move ; the Endone and Panadol takes care of most of it.

Now the hospital ! It is as good as it gets, the food is exceptional, the staff are prompt to help you and they have free wifi (limited unfortunately).

What have you got planned for Valentine's day ?