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Friday 27 January 2017

I'M FINE

A number of people have made contact with me recently asking why I haven't updated my blog. I
have been going through a few dilemmas with regard to my blog, so I thought I'd try to explain.

This post may have no order to it. Try to keep up!

When people look at me very often all they see is a woman with health issues. There is no escaping this. People ask how my health is all the time. They forget to ask about the other parts of me. People are kind, but lately I've been wanting to be noticed for other things other than disease. I'm a wife, a mother, a teacher. I have hobbies and some  I'm actually good it!. And...oh yes...I have CS.

When people listen to me they don't understand why I'm not "fixed". They don't understand that I will never, ever be fixed. There is no pill, no surgery, no doctor on the planet that can fix me. I just have to soldier on unfixed and broken.

Sometimes saying " I'm fine" pisses me right off. I am never fine. I have good days and I have bad days, but I am never fine. With the considerable weight loss I've had I can feel every tumour in my body. Sitting for long periods is uncomfortable due to tumours in my butt and back. They're benign and that's all doctors care about. But I'm not fine. I'm in pain...a lot. Benign tumours can be painful.

I worry a lot and lately more than usual. I keep quiet about a lot of it because people don't always want to or need to know. I worry about cancer all the time and I feel quite alone about this, because doctors only deal with what is, not what isn't. This doesn't help me after two cancer diagnoses and a body as lumpy as hell. And I know it's easy to say to someone to try not to think about it, but that doesn't work. I think of cancer every day. Every time I undress for a shower and see my reconstructions, they still fill me with fear.

Sometimes a week of doctor's appointments can silence me for a while. Because I don't live in the city appointments are scheduled close together. In one week my daughter and I can attend more appointments and undergo more procedures than a " normal" person in a lifetime. This drains you. Last week I held my daughter while she sobbed with fear after her breast check up. I know how she feels so all I can do is be there and bargain with God. Then there was my endoscopy to try and inflate a stomach that will not hold food. The tears started as the hospital came into view. I spent six weeks locked up in that place, and there I was about to go through a dilatation of my stomach to help me eat, a procedure with a risk of perforation once more. The procedure appears to have been successful and Ashton has a leave pass from that doctor for a year, but the week took its toll, physically and mentally.

And I suppose there is life in general to cope with. There are the problems everyone deals with- family issues, financial issues, work issues etc. Add them into the mix!

I didn't write this for sympathy. I wrote it to explain why sometimes I'm quiet on the blog. But it does give an insight into life with a chronic condition. Don't get me wrong, there is a lot of good in my life. Just sometimes I need time away. Blog statistics don't worry me anymore. The blog started as therapy and like all therapy it needs to be regular. I'm just redefining regular.

For those of you with CS, my door is always open. I get you. You don't have to tell me you're fine.

Till next time...xxx
ST




Tuesday 10 January 2017

MY HAPPY PLACE

Everyone needs a happy place, a place you can go to for recharging the batteries. Sometimes you can close your eyes and remember. Other times you get to go there in person.My happy place is Bali, Indonesia, a 3 1/2 hour flight from Perth.
                        

Having just been to Bali 3 months ago, I did not expect to be back so soon. How lucky can one be! We arrived on a late flight after an interesting journey sitting next to an elderly woman who must be in her eighties at least. She was dressed immaculately right down to to the pearl necklace and bracelet and probably would have been more comfortable in first class if the flight had one. When the drinks service started my thoughts were confirmed. The lady asked for a double scotch on the rocks and could not believe her ears when she was told that wasn't possible. " I've flown all over the world and never been refused a scotch" she said. Mark and I chuckled quietly as she continued complaining that she also missed the toiletries bag she normally got in first class. The lady next to her tried to speak to her quietly, but all that happened was " what are they going to do? Eject me?

The flight was quick and pleasant and we soon landed in Bali. Unfortunately we then had to wait one and a half hours for our luggage as due to a very tough drug policy every bag is scanned in Indonesia.  Being a person who travels with loads of medication I always worry about this part, but again they let me through without a problem.

Perth airport had not been so easy. I was " selected" for a full body scan and then they told me there was a suspicious spot on my thigh. I told them it was fat but they patted me down regardless, before deciding it was the folds of my dress! As soon as that was over I was selected for an explosives test! OMG! Do I look that dodgy? The only explosive likely was from my mouth, so I was let go.

Our poor driver had been waiting for us for two hours by the time we found him. The trip to our hotel was reasonably quick with both of us taking in the sounds and smells of Bali we've grown to love, while at the same time wondering how we could possibly avoid hitting the motorbike riders who were everywhere.

It was lovely to be greeted with " welcome home" by the staff. Makes you want to keep coming back.

The night went quickly and soon it was breakfast time. Normally Mark is up and at it first, but today I ended up in breakfast first because I seriously needed a caffeine hit. There were squeals of delight from a couple of the staff who remembered us. One of the older ladies asked me how my stomach
was. I think the look on my face answered her question. Breakfast was mainly fruit. I don't trust my stomach too much here, actually anywhere.

Mid morning we caught the hotel shuttle bus to Kerobokan to find a leather maker everyone has been raving about. He is getting married soon and I think we helped contribute to his wedding fund today. I am so excited to see what this man can do, especially with a piece of fabric I gave him.

Crochet, my current go to hobby, is everywhere as is macrame. There are crochet tops, hangings, bikinis, light covers etc and all are beautiful. With that in mind I went to a shop that caters for all crafts and I swear I started hyperventilating. I have never, ever seen such beautiful beads and braids. I also hope that Jetstar don't mind the 5 kg of crochet cotton I bought. Oops!


The day ended with a swim, happy hour for cocktails ( and yes I drank both in the 2 for1 offer), a magnificent sunset that Bali is famed for and an excellent local style dinner of which my stomach handled very little. Will this food nightmare ever end?



Bed time. Mark has TV blaring. Hope the neighbours are as deaf as I think he is.

Till next time...xxx
ST.

Saturday 31 December 2016

2016 BE GONE

It's been a while between posts as I have been busy preparing for Christmas. Those who know me
know I don't believe in the nonsense that goes with New Year, so I won't say I've been preparing for that because I haven't. New Years always seems like an anticlimax and for those of us with rare medical conditions, the promise of a new year with change can seem hollow. It's basically same ***, different year and to pretend that life is going to be any different because it's January 1 is probably somewhat naive for us. But anyway, moving on...

I recently read another blogger's summary of her year ( thanks Heather) and I thought I might try something similar myself. Humour me. It's 12.37am and I'm wide awake. (Note to self - re read in morning).

New Year 2016 - New Year 2017
  1. Number of operations this year for me - 1 ( huge improvement)
  2. Biggest achievement this year - learning how to eat again after my gastric sleeve operation.
  3. Biggest event that messed with my head - 48 kg weight loss! Took a while to get used to.
  4. Event of the year - turning 50
  5. Disappointment of the year - my hair loss and Snape dying.
  6. Favourite holiday - Bali
  7. Biggest surprise - Western Bulldogs winning grandfinal
  8. Happiest moment - a tie between Ashton's graduation and Ciara getting into her hard to get into course.
  9. Area I need to improve on - stamina for work.
  10. Area I improved on this year -  days I managed to work.
  11. Hobby started - crochet
  12. Hobby never started - regular exercise
  13. Favourite food this year - Brie and cruskets 
  14. Medications I stopped - 0
  15. Medications I take a day - 7 ( 😔)
  16. Person I couldn't live without  - my husband
  17. Medical person of the year - the doctor who removed Ashton's giant thyroid 
  18. Medical idiot of the year - same as last
  19. Blog highlight - my series from people also living with CS
  20. 2017 goals - attend not avoid all checkups, plan a 21st for Ciara, make a mandala and virus shawl in crochet, put the past behind me, avoid those who drain me, avoid those who use the phrase " think positive ", drink more good wine, pay it forward when I can, spend time with family, continue to advocate for CS.

HAPPY NEW YEAR EVERYONE
Thanks for being a crucial part of my life



Till next year...xxx




Monday 5 December 2016

JUST SOME THOUGHTS

Today a child told me she hadn't attended school for the last two days because her guardian couldn't find the money for bus fare. I didn't want her to feel shame so I said nothing.

Last week on a particularly warm day I asked a student why he was still wearing his windcheater. He told me nobody had washed his school shirt and the windcheater was all he had on. I didn't want him to feel shame so again I said nothing. He is 11.

Two weeks ago we were brain storming reasons why kids don't eat breakfast. Reason number two was " no food in the house". My heart broke. I reminded them about the breakfast club before school and moved on so nobody would feel embarrassed.

This afternoon I made puppets with a bunch of 14 year old female childcare students. Their pleasure in something so simple was a joy. Five minutes later they were discussing somebody they knew who had been bashed by a boyfriend. The story stole everyone's  joy.

I asked a young girl why she wasn't going to be at school the following day. She said she never came on Wednesdays. I asked her why. She said she preferred Netflix, her bed and the fridge at home. I asked her how come her parents allowed it and she proudly told me the sort of trouble she could cause if they intervened. So they never did. Her attendance confirms this.

I listened to a group of 12 year old girls discussing their boyfriends. I sincerely hope they're imaginary ones but I doubt it. I also doubt they're all still virgins.

There are kids who look like they could do with a hug. As a teacher I can't do this. As a mother it is hard not to do it.

What the hell is wrong with our world that our children are living like this?

ST










Sunday 4 December 2016

TAKE THE GOOD WITH THE BAD

Lately I just haven't been bothered with my blog. It's odd isn't it? After 3 years of writing and telling my story, I just seem to have lost the interest to share.



But I've realised how dangerous that can be for me. I've realised how therapeutic and necessary blogging is to my mental health and I've also realised that every story has good and bad parts to it, and sharing the good is as important as sharing the bad. Have I confused you yet?

So here are the good and the bad from the last month.

  1. My stomach is a mess. It's formed angles where food is lodging before making a reverse journey. Apparently the scar tissue from all the procedures has caused this. Most likely back to theatre for me in the New Year. ( BAD)💔
  2. I've now lost 48kgs ( GOOD) and thanks to my useless as hell PTEN gene can now feel every lump on my body. The broken PTEN gene is what causes my Cowden's syndrome. Biggest problem area under my right ribs. Joy to the world...more theatre/ surgery looming. ( BAD)
  3. I've been blessed with some full time work for 3 weeks. My body is exhausted and unused to full time work, but I am pushing through because the money is much needed before Xmas. (GOOD) 
  4. I've taken up crochet, a craft I used to love in my teens. It was a bit hard at the beginning because of my tremor but I swear it's helping my fine motor skills. I actually threaded the sewing machine at school the other day. Unheard of!!! ( GOOD).
  5. My youngest daughter got into a prestigious musical theatre school. I am so proud of her hard work and resilience. So excited for what life holds for her. ( VERY VERY GOOD).
  6. I'm going back to Bali, my happy place. My husband says we deserve it so I'm not arguing. The place, the people, the food, the noise and the sunsets ground me. Again...so excited. ( VERY VERY GOOD).
  7. My children are coming home for Xmas. ❤️❤️❤️❤️❤️❤️❤️❤️❤️. We don't need to travel for Xmas. ( GOOD) 
  8. Every Xmas decoration I've ever owned or made by the children as they grew up has been accidentally binned. I've had to buy new baubles to dress the tree 🌲. It doesn't feel the same or look the same. It's like our stories have been stolen from us. ( BAD)
  9. I've had a mini spring clean ... at the start of summer! All has gone to charity. It feels wonderful to have the extra space, but again some of the stuff being donated feels like part of our story we have lost. It had to go though as we are bursting at the seams and I don't want to become a Today Tonight story!!! ( GOOD).
  10. My eldest daughter is looking the best I have seen her in years. She is happy and looks fit and healthy. More tests in the New Year but at the moment # Wearebeatingcowdens (GOOD).
So there you have it folks. The good 😊 is exceeding the bad this month. About time we had a good run!   

Till next time... xxx
ST

Saturday 12 November 2016

YOU DON'T ALWAYS GET THE BEATER

YEARS AGO when I was about seven my Dad decided to take me to visit my Nanna. I was not
impressed. I loved my Nanna but that morning my eyes and my tummy were engaged elsewhere. Mum was making a chocolate cake. Her beautiful Kenwood mixmaster was set up on the kitchen bench ready to go and she had promised I could lick the beaters when she'd made the cake. So I wasn't happy about giving up my beaters to go visiting. My Mum ( probably sensing she would be one child less for a few hours) promised to save the beaters for me and happy with that deal I took off with my Dad.

A few hours later Dad and I returned and I raced up the stairs in anticipation of the chocolatey goodness awaiting me. I have never forgotten the sight that awaited me. There sitting on the floor covered head to toe in my cake batter was my five year old sister Michaela. She had (when Mum wasn't looking), reached up for the beaters and sitting casually on the kitchen floor has licked them dry.

I screamed blue murder and Mum came running. I was inconsolable. Why did she have MY beaters? Mum raced into the room, took one look at my sister covered in batter and collapsed laughing. How could she laugh? My pre established rights to that beater had been thwarted. This was a scandal of national proportions made only worse by Mum telling me to " get over it". Oh the injustice of it all.

So at age 50 why am I bringing up this story? Apart from the fact that I'm still harbouring a grudge, it's been obvious to me this week that my story is symbolic of so many aspects of life. You don't always get what you believe you should get.

For example I never imagined that after working so hard to climb the ladder in my teaching career, that I would be back to substitute ( relief) teaching at my age. For those who don't know my story, I was forced to give up my full time job to deal with illness in both myself and my adult daughter. I needed a more flexible job situation, one where I could easily take time off  if I needed to. Relief teaching was ideal. Not where I wanted to be at this stage of  my life but ideal for dealing with what life had handed me. You don't always get the beater.

A 12 year old girl shared a story with me this week. Her eldest sister had given birth to quadruplets and soon after her partner had walked out on her. Not surprisingly she was struggling with the enormity of four babies and everything that goes with them. To help her, the girls' Mum takes two babies at a time home with her to give her eldest daughter a break. The babies are rotated so they all get to spend time with Mum.


I couldn't help thinking about this Mum/Nanna. She has a 12 year old herself and was probably thinking she could see the light at the end of the tunnel. I wondered  if she was dreaming about a child free time coming soon, about no school runs, no lunches, no uniforms, when suddenly BANG she became a Nanna to four...and her daughter needed her...and it felt like she had to start all over again. Poor woman! I'm sure it's not what she had in mind. You don't always get the beater!

There are so many other examples I could share. I have been fascinated by the American elections this week and disappointed that Hillary didn't get the beater. It was expected she would have it, but Trump stole her beater and like my sister licked it dry. You don't always get what you feel is rightfully yours. Life inevitably goes on and we learn to accomodate the changes.

I'm off to make a chocolate cake.

Till next time...xxx


Monday 24 October 2016

ZAP ZAP ZAP

When you have Cowden's syndrome and you grow lots of lumps, you can bet your bottom dollar that sooner or later you will be having a lump of some sort tested. Today is that day and at the moment I'm having a stand off with a glass of water, which is glass 1 of 6 that I need to drink before having a cat scan in two hours time. I have such a little stomach that I'm already struggling and I haven't even drunk one! Oh dear. Sip, sip.

I arrived early for the scan because I had a few questions. It quickly became obvious that the lady dealing with me was not in the mood for questions. This attitude when it happens is so hard to deal with. Unfortunately it happens frequently.

I wanted to know if the dose of contrast dye was calculated on your body weight. The reason I wanted to know is that I am 46kg lighter than last time and didn't want any possible problems if they grabbed the dose off my last sheet. She answered my question but literally stopped short of rolling her eyes in frustration at me. It was a standard dose by the way.

I asked why I needed to stay for 45 minutes after the scan as I'd never had to do that before. This time I did get the rolled eyes. Apparently it's protocol. Hmmm lady I've had more of these than you and I know its not, but I'll be quiet because otherwise I might need to explain what a supreme effort coming here is. I might have to explain that this time a year ago I almost died in this hospital and that today is the first time I've stepped back in here and brave as I am I don't want to be here a minute longer than I have to, let alone 45 minutes.

While positioning me on the scanner bed, my patience finally ran out. I had to lie on my back with my arms extended above my head. It's a difficult position for someone who has breast reconstructions and it usually takes me a minute to get comfy. She was having none of it. She grabbed my arms trying to pull me into position. I asked her to be gentle as it is uncomfortable  to be in this position when you have breast reconstructions.

Her tone changed immediately. Yes telling her I had reconstructions was indirectly telling her I once had breast cancer. She became human. I told her I had Cowden's syndrome which unsurprisingly she had never heard of and she said it was great I was still around, which is a standard reply when people don't know what to say. I shouldn't have had to share all this to get her human side.

It's quite surreal when the scanner is blasting you. I know that my condition isn't helped by the radiation being fired through me. But I also know that without it, the tumours invading my body can't be monitored and they need to be monitored because without my padding I can feel them more and they bloody hurt. And when something hurts you worry and think the worst, even a hundred lumps later.

The dye starts. I can feel the metallic taste in my mouth and then the familiar warmth invade my groin area. It seems to last longer than usual but I don't dare ask another question. I am taken off the bed and into the waiting area to serve my 45 minute sentence.

At the end, a young man whom I remember from my previous scan comes over. He says " welcome back" and asks how I've been since last time. We make pleasant chitchat for five minutes and he then ushers me into the treatment room to remove my cannula. I jokingly say that his colleague thinks I'm a " pain in the arse" because I ask too many questions. He chuckles and tells me she's the biggest pain in the arse going. I laugh and my faith is restored in people.

Moral of my story- ask as many questions as you like. Nobody knows your condition and your story as well as you do and you have every right to information and knowledge that informs you and eases your mind.

Now to wait for results.

Till next time...xxx                            


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