HOW ARE YOU GOING?

Are you OK or how are you going are the hardest questions for a person with a rare condition to answer. I get asked these question dozens of times a week and each time I stumble over my answer. You see they are usually asked because a person is genuinely being nice. Sometimes they are asked because a person is being nosy. And other times, especially in Australia it is just habit.

So how does one answer these questions without offending the genuine and do people really want to know the proper answer anyway? I find myself increasingly answering "good thanks", simply to get the situation over and done with. I find myself realising that people don't need to know and sometimes don't really want to know, so I feel I've saved us both the trouble really.

It really is quite exasperating because this ends up feeling like I have been issued with a gag notice. You must not and can not tell people the truth about how you are going, because in reality they can't possibly understand. Some gave up trying to understand my condition and my daughter's ages ago. They don't understand why we are not fixed, so when they occasionally slip up and ask how we are going, you almost see a look of terror on their face. OH NO, SHE IS GOING TO ANSWER. I think that people don't know what more to say and I get that. The first time she was sick I was 100% supportive but by the twentieth time, I don't know what to say to her.


Of late I have even started the "good thanks" business with family because for some reason I always feel like I am trying to out do their problems. And that is not fair. Everyone's reaction to their situation is relative to their experience. A lump in my body results in a systematic approach to investigation. I do it without blinking. A lump in someone else may elicit pure terror. Although the lump is more likely to be nasty in my case, I zip my lips. Everyone has to feel their own way and their own terror. A friend recently had a melt down because he needed a blood test. Oh LOL.


Maybe I should adopt my uncle's approach. When he came to visit us in Australia from Malta, he seemed completely baffled why Aussies use the phrase " how are you going?". His initially couldn't figure out why people always asked his mode of transport. After laughing my head off we explained it was a way of saying "how are you". Maybe I should just answer " by car" to everything, like he initially did.

A week in the life of someone with CS varies. My daughter and I have what we call "doctors weeks" where we try to make sure we use our time wisely to avoid the 450km trip back to the city. So between us it could look something like this - specialist visit, mri, blood test, endoscopy. I haven't made that up. That was a few weeks ago and its not unusual.

So when you ask if I'm ok this is what I want to say:

I'm worried about that lump.

I'm worried about the ongoing radiation.

I'm scared the nurse who bruises me will do the blood tests.

I'm terrified of more damage to my stomach.
I'm worried about the bills.
I'm anxious at missing work.


But I can't because it makes people uneasy and uncomfortable. I save it for the precious few who can still cope and for the majority I answer "I'm good thanks". It's not fair but its what I've got unless you want the " by car" answer.


Till next time...xxx
ST

WHEN YOU GROW UP

Growing up is hard. In a classroom I frequently have to remind myself that the behaviour of a student

will be different " when he or she grows up". I have to remind myself to be patient, calm, methodical and non argumentative when all I want to really do is slap their bottoms. It's taxing but it will be better "when they grow up".

Enter Sam a 14 year old boy with overactive vocal cords and quite possibly ants in his pants because he can't sit still. Sam is the class clown. He reminds me that we met last year in his old school and as I have deleted said meeting from my memory banks ( if it ever happened), I pretend to remember. Big mistake. He then proceeds to say something inappropriate to his mates who all laugh. He has a team. Game on buddy.

Sam twists and turns and talks out loud, especially when I'm talking. When reminded of correct behaviour he stops for a millisecond, before continuing. He then asks to go to the toilet and delighted to have 5 minutes peace I agree.

Sam returns and resumes his conversations with his admirers. Time to take out the allies. I ask him to move to a seat in front of me. He initially refuses as it would ruin his tough guy reputation. I focus my look on a spot between his eyes and he caves...momentarily. He gets his own back by announcing to the class that I want to get closer to him. I ignore and sit on my twitching palms. He'll be better when he's older.

I ignore the hand waving in front of me until there is some writing on his page. So he scribbles something. He wants to go to the toilet. " But you've been!" I say.  "No, I couldn't find it" he says, " so I came back".

Now this is possible BS or possibly true. These kids are new to this school. I take him outside the door and point out the boys toilets. He scoots down the stairs and I pray there is no deputy principal wandering. Actually at this stage, truth be known I didn't care.

He returns and sits himself in front of me. I ignore him and do a round of the room. I return as he has been trying to rev up his team from afar. He asks me if I'm aware one of my eyebrows is higher than the other. I ignore. He tells me my nail polish is pretty. I ignore. He turns round and engages with an ally. I react calmly and move him to a table and chair outside the room, on the verandah. He is mortified and now worried as the head of department is close. For a moment I feel sorry for Sam. He is just a kid and it will be better when he grows up. But there are 20 something others in the room and my sanity to contend with.

Years ago I taught a different Sam, a female one but equally argumentative and difficult. This Sam was with me for 10 out of her 30 lessons a week and though many times I literally wanted to kill her, she remains one of my favourite students ever. She was loud, pig headed, adamant she was always right and hard work. As I got to know her I realised she had the biggest heart, was super loyal and defended those she loved at all costs, even if she got suspended, which inevitably happened. When my daughter moved to college in Perth, she threatened to move in. I used to laugh but took it as a compliment of how far we had come. She was getting better as she grew up!

This week, five years after she left school, I received the most beautiful note which touched me deeply. Here is part of it:

And also I don't know if I have said it before but reading some of your blog posts and growing up a lot now I feel so horrible for how much of a brat I was in school for you. Knowing some of your stories and your sickness I feel like such a little brat (which I was) and feel terrible as back then you would have been dealing with and going through hell. I thankyou for all the love and support you still gave me regardless through it all. I hope you are well.

Wow...wow...wow
Talk about getting better with age! So glad for the gift of patience that has enabled me not only to deal with students in my career but also the hurdles my condition presents sometimes on a daily basis.

Till next time...xxx
ST

PENCIL PAIN

There is nothing more irritating to me than the sound of someone tapping their pen repeatedly on a

table and so when I found myself in this situation this afternoon, I gritted my teeth and waited for it to stop. It didn't.

Now the person in question is a 12 year old boy and my experience with this age group is that pretty much , NOT MUCH, resides in their head. I mean they have a brain and all that, but it's obvious that the brain is in a try before you buy phase. Let's call the boy Ryan because that's not his name.

" Ryan, I'd really like it if you stop tapping your pencil and use it instead to do some work".
" Ok miss" ( I'm eternally unmarried in public school).
I watched as Ryan looked me straight in the eye and started tapping his pencil again. This little sod is now upping the ante.
Take 2 - " Ryan please don't tap your pencil. It's very distracting to everyone ."
" Ok Miss"
Once more he looks me in the eye and continued tapping.
" Ok Ryan, make a choice, keep tapping and you'll lose the pencil and have other consequences OR stop tapping and do your work"
" But if you take my pencil, I can't do my work!" ( flipping 12 year old male logic).
" Make a choice!"
" I'll do my work"
" Good choice. Well done.
He then proceeded to once again look me in the eye and tap the pencil.
" Oh Ryan bad choice, 5 minutes detention after school.
"Why?" ( is this kid for real???)

" We'll discuss it after school.
Ryan then proceeds to do one whole minute work without tapping. He is joined at detention by another darling with over active vocal cords.
" Why have I kept you in Ryan?"
" Err dunno "
" Well maybe I have to let you sit quietly for a while till you come up with a reason."
" I didn't do my work".
" No"
" I talked too much".
" No".
" Any other reason you can think of?" ( shakes head).
Another couple of minutes to think while I dispatched vocal cords.
" Anything new Ryan?"
" Was it the pencil?"
Bingo.

The story concluded with a discussion about him looking me in the eye and deliberately doing the wrong thing. He repeated to me what he had done wrong and told me what he would do differently next time.

Hmm

Day 1 - school is back and the teaching of social skills and manners is up and running.

Till next time...xxx
ST

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

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.

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

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