HOUSTON WE HAVE A PROBLEM

So they say silence is deafening. Obviously by the amount of private messages I have received in the last 24 hours some of you sense that something is not right. And you are right. Once more we have encountered a hurdle in what is our never ending race to the finish line.

For some reason Friday didn't feel right. The FED ( favourite eldest daughter) was nervous about her procedure and she is never normally nervous. I didn't want to leave the hospital during the procedure. I don't normally think twice about leaving.

Yes, Friday felt odd.

The plan was that the doctor would ring after the angiogram and tell us whether he could or couldn't sort out the second fistula. Three hours into the procedure and we had no phone call. I assumed that he had just carried on after the angiogram and felt some relief that the procedure was possible.

And then came the phone call with my daughter sobbing at the other end. In performing the angiogram a nodule had "lit up" on her thyroid. Dr HS said it needed to be biopsied and that it had to be done while she was off anticoagulants. If he continued working, a biopsy would not be possible.She was back on the ward with fistula still present.

Nothing wrenches at my heart more, than my children sobbing their eyes out.

And of course being mere mortals we all immediately think of the worst. We rattle off all the thyroid problems on both sides of the family and yes there are many, so we feel worse. And then on top of the family history there is my Cowdens which gives you an increased risk of thyroid cancer. Of course, that doesn't mean you'll get it. I never did.

 Plus I'm pretty sure it's predominantly males with CS who get thyroid cancer.

I'm babbling because I'm overwrought with mental and physical exhaustion.I'm thinking and talking out loud to try and make her feel better...to try and make us all feel better.

Dr HS arrives and runs through everything for me and the husband. I hear everything and take in nothing. All I can think about is that this child is a carbon copy of me and that my nodules were benign. Please God let hers be too. Enough is enough.

So, this week is an unknown. We will meet a new doctor and a new department and we will deal with this hiccup as best we can.

Then we can get back to the brain.

Till next time...xxx

A LETTER TO GOD

Dear God

Hope you've had a good day. Mine wasn't so bad except for the bit where I had to drive to Perth again. It's only been four days since we came home so we haven't had a chance of forgetting our way or anything! Funnily enough the husband was convinced that it's been a week and a half since our last trip. Glad to see it's not just me who is losing it.

Now God lets chat. I think you do a fabulous job but if you don't mind I would like to suggest a few changes you may wish to consider, to make our life a little bit easier. I hope you don't think I'm being too forward!

1. Jurien Bay bakery needs more jam doughnuts. It's most upsetting to get half way and be denied the choice of having one. 
2. Thank you for the Kangaroos but could you please keep them off the road? I know they're your creatures and all that but really they scare the crap out of the husband when they just appear.
3. What have you done with the emus? Thats three trips in one week and not one emu, but plenty of those  hippity hoppity things. Bring back the emus!
4. Can you do something about the reception. I mean what's a girl supposed to do for four hours in the car. The husband and I have been married for ever. We know each other's stories. I could have done my blog on the way instead of 10.41 pm in the dark. Please fix the reception so I can get internet!
5. Cyclist on the road in the middle of nowhere? What was that about? Was I meant to stop? Was it a challenge? Really God! It's not safe to be in the Australian bush at that time of the day ALONE. You're meant to know that!!
6. By the way thanks for that amazing sunset which we did notice in between watching for animals. Oh also...could you make the husband believe that the animal I saw was really a kangaroo not a sheep. He laughed so much at me and kept cackling that sheep have four legs! It's so annoying when I make a mistake and he just goes on.

Now God while I'm on a roll...

Tomorrow, I'm assuming that you will be standing right next to Dr HS during the FED's procedure. He says he doesn't believe in you but the FED ( favourite eldest daughter) and I look at each other in disbelief. Where does he think he got all his skill from? Really!!! Anyway, keep an eye on him as usual won't you and guide his hands. And please don't let the procedure go on too long God. It's really hard on the people who are waiting especially me, the husband and the FYD.

Gotta get some sleep now God.

Gotta be up soon.

In your hands as usual xxxx

S

HOW TO GET POPULAR FOR ALL THE WRONG REASONS!!!

 In Australia today it's Melbourne Cup day. It's a day where the country stops for a horse race. It's a day to lunch and drink and hopefully make a little bit of money. It's almost like a religious day of obligation!


And then there are those ( eg my daughter), who had no time for Melbourne Cup festivities because she was desperately trying to get assignments completed. Why the rush? Yep, you guessed it. Back in hospital for more surgery in three days. If you haven't read the last post which explains why, here is the link.

http://lumpyone.blogspot.com.au/2014/10/kangaroos-and-doctor-stuff.html

I was feeling a little glum about the whole prospect of her going through it again. Then she asked me to proof read her English assignment. It was an autobiographical account of the last fifteen months.

It was more accurately an account of her positivity and inner strength, in the face of a condition no one should have to go through, at such a young age especially. It was factual yet humorous and full of gratitude to have the opportunity to be treated.

I am still a bit down, because after all it is brain procedure number fourteen. However, by reading what she wrote I am reminded to be grateful that at least there are still options available to make her better.

There are a lot of new people who are reading my blog and it got me thinking that many of you have not followed my story or my daughter's from the start and consequently are not up to speed. With regards to my daughter, you could read all previous posts...but there ARE lots! Or you could just read three. The three that according to my blog stats were so very popular. My attempt at turning our unfolding story into a satirical kids book, made my blog popular for all the wrong reasons.

So enjoy my re-posting of A NAUGHTY BRAIN which you can find by clicking on the following three links from May and July this year.

http://lumpyone.blogspot.com.au/2014/05/just-load-of-nonsense.html

http://lumpyone.blogspot.com.au/2014/07/just-load-of-nonsense-2.html

http://lumpyone.blogspot.com.au/2014/07/just-load-of-nonsense-3.html

Enjoy and have a laugh for us!!

Unfortunately, it never was the end of the story! See you in hospital! 



Till next time...xxx

KANGAROOS AND DOCTOR STUFF

I'm not the best with house guests but I have to admit I have really enjoyed the last two days with my cousin in Geraldton. We've done some fun things, from cuddling a baby kangaroo called Lucy to cooking a Maltese rabbit dish and from visiting the spectacular Sydney memorial to the not so spectacular propeller on the foreshore ( what were they thinking)!

Today was road trip day back to Perth with a side trip to the Cervantes Pinnacles. This is always worth a visit if you're travelling in Western Australia, especially if you're into " interestingly shaped" lumps of limestone ( see photo). Only disappointment of today's  trip was the lack of any animals whatsoever. No kangaroos. No emus. No wallabies. No nothing!!!

Tomorrow we get back on the medical roundabout. It's time for the FED's ( favourite eldest daughters) checkup with Dr Hot Stuff and mine with Dr Plastic Surgeon, who is going to be annoyed with me because I've removed all my itchy, unsightly dressings. Oh well!!

Those of you who are new to my blog may have to read some earlier blogs to familiarise yourself with my daughters story. Let's just say that at the age of 20, she has had 13 brain surgeries including two craniotomies. She is a real tough cookie, coping with what most would have found impossible, with a strong sense of humour. The nickname of Hot Stuff is one which evolved this year. It started with- Hot Stuff - he thinks he's hot stuff ( they didn't get on at first)...then...Hot Stuff - he's very good looking ( she posted a photo with him and everyone suddenly became ill)...to...Hot Stuff - he saved my life ( friends for life, he is hot stuff).

I wonder if he suspects he has this whole alter ego.

--------------------------------------------------------------

Next day having just dropped the FED at uni I head off in search of a caffeine fix. There is no bad
news from her doctors appointment, but there is news. Her last MRI was really good and she is doing really well ( hurrah). However, this doesn't mean she doesn't need more surgery ( sad face). She has a second fistula which so far has been non symptomatic and the doctors would like to attempt to remove it, rather than risk a disaster like the first aggressive fistula developing.

So, surgery number 14 will be next week. Here we go again.

 We always knew it was on the cards but it still is gut wrenching to know that she has to go through the process again. By the way, Dr Hot Stuff informs us he is going to be a daddy for the third time. He is going to have three kids under the age of 5. We may have to change his nickname to Dumb Stuff.

My checkup is non eventful and I find out that everything removed last week is benign. I get a gentle ticking off about the dressings I removed as he deftly reapplies new ones. Nothing changes. I have been arguing with him about dressings for 5 years!

At the counter I meet a woman who strikes me as being quite sad. She tells me she has had 15 operations in 14 years and sighs about how bad her lot is in life. I find her rather draining and hope like hell I don't make people around me feel like that.

I am still thinking about this lady while driving away. For some reason her demeanour makes me feel claustrophobic. At the traffic lights I decide to lower my car window for some air . At exactly the same time, another car passes very close to mine. The man close to me leans out of the window and emits the biggest sneeze ever. Water sprays my window, milliseconds before it hits the bottom. Saved by the window.

You see... life always has some positives!

Till next time...xxx

IT'S OK TO GET HELP

I'm going to write about depression and I know that certain people will view this as confronting. I just don't get the stigma still attached by some people to depression. If your leg or your heart or your skin has a problem, that's socially acceptable. But mention your brain having a problem and it still upsets some people!

I have suffered from depression all my life and I don't care less about stigmas. I talk about my depression and discuss feelings, medication and treatments I've tried quite openly. To not do that would be to play along with labelling others impose.

I could feel an attack building up a couple of days ago. Its hard to explain other than I was getting emotionally lower and lower as the week progressed. Also, all I wanted to do was sleep and I just couldn't. Its quite debilitating because while trying to keep a strong front, your inside strength crumbles slowly. You try to have conversations with people and maintain a "normal" facade,  but its physically and emotionally exhausting.

Eventually something really trivial triggers the final crumbling and ensures the tears and withdrawal start. In my case it was a joke by one of my doctors. He said that we needed to test something because I was weird. Normally I would have laughed and joked back, but this week it was a bit of a trigger for tears and anxiety.

 I decided to go home from the city,to my house, my bed and my husband. I can manage better in my own surroundings.

I spent a whole day alternating between bed and household chores. Everything I did tired me out and when I get like this, I know I need to rest and look after myself. This is what I used to do wrong. I used to just keep going because I had to. I had kids who relied on me. Who had time to stop and self care?

These days my tune has changed. I look after myself, so I can help those who rely on me better. I do

nice stuff - write on my blog, sit in a coffee shop and drink nice coffee, cook a treat. Above all I sleep.

And it works. Today after a five day downward spiral my mood is lifting and I feel a lot better, which is great because today the cousin is making the trek up to my town for a visit. He is presently on a five hour bus trip to get here. In Maltese terms, he has probably gone around the island a thousand times so far.

I really hope he sees a kangaroo cos he really wants to see a kangaroo.

But back to depression and why I wanted to write about it. I have started getting messages from people who follow my blog... and for the record I love it when people leave me comments/messages. A couple of messages lately have been from people suffering from depression and going through terrible ordeals, especially with their own health.

Now I'm no doctor but I am a professional patient. I don't know why I get depression, but the fact is I do. When you look at all the " crap" I've had to go through in the last 30 years, people always say:
 " No wonder. Poor thing"! And yes they're right. But, if you're waiting to have a life that is as rotten as mine before you seek help, then you have rocks in your head.

Depression is real. If you have depression do what it takes - see a doctor, take medications, exercise, write blogs...Do whatever you need to feel better ,because everything's so much better when your head clears. And don't worry about what other people may or may not think. You only get one life and you can't enjoy it with a grey cloud residing in your head.

Till next time...xxx

TUMOUR ME

This week has been "doctors week" thanks to aches, pains and niggling thoughts constantly reminding me  that my own body needs attention. 

First stop was the gastroenterologist for a checkup. He is fascinated by the " inside" of my body because it is chock a block full of hamartomas. 

What's a hamartoma you ask? 

Well, it's a polyp, but usually not like the ones that cause cancer. The problem is that only one bad polyp is needed to give you cancer and as I have literally hundreds of hamartomas, a worry is that they could miss " the bad one" in my garden bed of hamartomas.

 Hope that's not too confusing to understand.

So, basically ( groan), when food rubs a hamartoma up the wrong way, it retaliates by bleeding. And we all know that doctors don't like the sight of blood. So, on hearing the word " bleeding" doctor removes his glasses, waits for an imaginary drum roll and erupts with:

" Let's do a colonoscopy, shall we?".

I'm never sure if I'm meant to do a happy dance or sing a song of joy at this point. It feels sort of expected. He's just a bit too excited by my hamartomas if you ask me and I'm getting rather protective of them. And I can't understand one thing. IF " movement" causes bleeding, why in God's name do I have to spend hours before the procedure " moving" some more. Seems pointless.

Have you tasted the stuff they give you to drink?

It's like a cross between lemon cordial and your own urine. And as there's bound to be someone out there who asks me if I've drunk my own urine then, be warned. I am in a mood!

YAY IM GOING TO HAVE A COLONOSCOPY said no one ever.

Next stop, day surgery with my favourite doctor, my plastic surgeon.

We got off to a bad start because I left my consent papers at home. He asked me how he was supposed to know what to take out. Honestly, first world problems! I told him...and chucked in a couple more that he wasn't aware 
weren't on the other form. A couple more lumps that is. Total to be removed - 
five on forearm , one on chest, one super duper painful one on back.

"I'm not taking out the back one."

"Why? PLEASE!!! It hurts and I will beg."

"Not till you have a biopsy."

"Oh for goodness sake. You know I hate biopsies."

"I'm not taking out the chest one here. It's too deep."

"But it hurts too!"

"If I take out the back one, then I can take out the chest one...under a general."

"So, both depend on me having a biopsy?"

"Yes"

Grrrr. I have never won an argument with this doctor ever!

He took out the five baby lumps on my arm and I swear he popped them out on purpose. Gross! The nurse even showed me...cos everyone needs to see their own tumours sometime in their life.

After the fun and games I was literally ordered to the recovery lounge by Nurse #grumpy#needs to retire.

"Are you a nurse" she barked at me.

" God forbid" was my automatic response, thinking of the weirdo who just showed me my tumour.

" You seem to know the doctor very well", she said suspiciously.

Hmmm...how to reply to that???????

TEMPTED to say something witty but my bloody arm hurt so I just gave her a "look".

On the way out I called in at my respiratory specialist to see how free he was to see me this week. The plastic surgeon didn't like my husky voice and when I 
told him I'd had it for 3 weeks, he asked me to get checked out for throat nodules. Great...cos I don't have enough to stress about.

Bed - 8pm

                                                                     -----------------

It's now 5 am and cos I went to bed early, I am now wide awake. Lump on chest wall is throbbing and reminding me of it's existence. Wish it would just go die in a hole somewhere. It's near my breast reconstructions and even though Dr Plastic Surgeon says it won't be malignant, I don't like anything growing in that area.Last time something grew in that area I ended up with saline boobs.

Afternoon arrives quickly. The reception at the radiological clinic is decorated in pink bras, balloons and streamers. It's a fundraiser, but it makes it look like having breast cancer is a party. 

It's not.

I am not a patient woman.

I hate waiting for anything and I haven't had any lunch so I'm grumpy and annoyed by the pink party in front of me.

Hurry up!

Enter one "running late" doctor, syringes and tubes...lots of them. It's biopsy party time.

" I think you have a large haematoma. Let's drain it shall we?"

" Oh goody, sounds like fun" - sarcastic me to myself.

" Look, lots and lots". SHOWS me syringe full of blood.

HONEST TO GOD. ARE YOU RELATED TO THE TUMOUR SHOWING NURSE?

Just for the record. Nobody lying on fake boobs is comfortable and nor are they interested in checking out their own blood.

I pay and I leave.

I feel fine but hungry.

I queue up in the coffee shop and ( fanfare), I FAINT. 

YEP...could this week get any more entertaining?

I come to and find someone with a foreign accent trying to force feed me water.

I eventually feel better and order a coffee and a chicken pie to "eat in". Foreign accent gives me a coffee and a beef pie to takeaway.

I don't argue. 

What's the point?

Till next time...xxx

HE NOW CALLS AUSTRALIA HOME!

Yesterday my youngest male cousin arrived from Malta. Although he wishes to be known as the favourite youngest male cousin ( FYMC) , I will simply refer to him as " the cousin".

We are all looking forward to introducing the cousin to our lovely country and dispelling some of the ideas about Australia, which visitors often arrive with. Eg within minutes of getting in the car he asked the FED ( favourite eldest daughter) how soon till he would see a kangaroo. Quick as a flash she replied... " ooh we have to be careful, they're everywhere". We still don't know if he

believed her or not, but just in case we might string that one out a bit. Maybe I can tell him how yesterday, on my way to the city, a kangaroo hopped right in front of our car ( true) , while being chased by a spear wielding aboriginal ( definitely not true). God, this is going to be fun!

My family came to Australia in 1975 when I was only 9 years old. So, despite claiming Maltese heritage I am actually also very much Australian. The only thing we REALLY were when we got to this country was "weird". Nobody could understand our accents or our ways. We in turn couldn't understand Aussie colloquialisms. A well told story is where my mother was told to " bring a plate" to a BBQ. My kindhearted mother never having heard that phrase before, took not one plate but five - one for each one of us. She also took five forks and five knives. "Bring a plate" in Australia means " bring a plate of food for sharing". Poor Mum was mortified!

Later in life when I married an Australian who grew up in the country, my knowledge of Aussie lingo (language)  expanded. My favourite phrase of all time is " useless as tits on a bull" which the husband aims at anyone from footballers to politicians to the kids . It is just so apt and if you haven't worked it out means you are totally and utterly useless! Another favourite came from his brother in law who till this day describes big, strong people as being " built like a brick shithouse". It's a very colourful language indeed and one I'm still working on understanding fully!

Australia in the 70's was a fabulous place to grow up in. Initially we lived in the northwest in a small town called Port Hedland. One of my favourite memories in primary school was watching a young tribal aboriginal boy show and talk about an emu egg his grandfather had painted on the weekend. I was totally fascinated! I also remember my parents being given some Aboriginal spears, which were then hung up in our house. For some reason as I grew up I always felt safe knowing those spears were  close by!

On December 8, 1975 our town was hit by a cyclone. That is unfortunately a risk of living in that location. As winds and rain lashed our town, we took refuge, as instructed, under a table. I thought it was fun but my parents I found out later were beyond anxious. My mother called on God and every saint possible to 
save us and they obviously obliged. In the morning we were greeted by fallen fences, flattened houses and no school!!! We ran around a town that looked like a war zone but felt like movie stars because of the attention the town got on TV.

Yes it was an exciting country to grow up in. I never felt unwelcome and never  felt unwanted. There was one time growing up in Perth were someone told me to " go home refugee". I just remember feeling pity that this kid had no idea what a refugee was, and I just carried on. I put vegemite on my toast and ate my mother's Maltese cooking. I was obsessed with Australian musicians and cricketers but also sang the Maltese songs and rhymes I remembered, now long gone. I made friends with Australians, Italians, Irish ,Greeks and many, many more. I was proud to be a wog.This was multiculturalism at it's best!

As I grew older I travelled to many parts of Australia. It's hard to pick a favourite spot as all areas are so different. From freezing cold Melbourne in winter to the Gold Coast in summer, every place holds special memories.

I hope as the cousin travels around the country he gets to feel some of the magic I felt growing up, and gets to create his own Aussie memories in a very special country. But beware those kangaroos and weapon wielding natives!!!

Till next time...xxx