GIVE A GIRL AN ICECREAM!!!

There are so many things that could have flattened me in the last 12 months but all it actually took was the common cold.

Now, I could tell you about the sniffles and dribbles, the coughing up of lungs, the cracked nose and lips and the mountain of tissues. But I'll spare you the details and fill you in about the week instead. 

You may recall that one of my daughter's fistula procedures was cut short because the doctor found nodules on her thyroid which needed investigating. Well, that's been done and we expect some results in the next week or so. Nothing more can be done on fistula number 2 till the agenda of the thyroid is determined. Really, really frustrating stuff I can tell you, especially since fistula number 2 is in need of the demolition it's big brother got.

So once again we wait.

I should be an expert at this by now, but yesterday it all finally got to me. What got to me? Take your pick...

• Waiting  (has never been my forte).
• The possibility of something else being wrong.
•  The wasted time when the doctors could be working in fistula 2.
• The fact that my husband has to return to work and I am dealing with this essentially alone.
• The distance to my home and my bed, which is all I want at the moment with this bloody cold.
• The possibility of having to cancel a much needed week away that the husband and I have planned and paid for.
• Icecream

Yes, icecream! Feeling down in the dumps I decided to treat myself to an icecream and to drive the necessary distance to purchase the type I wanted. On arrival, the machine was out of order and no icecream was available for sale. Of course!!!

And of course that was the final straw - not the fistula, not the thyroid, not the lumps, not the head cold from hell but THE ICECREAM.

I may have shed a few tears...or a few litres of tears...down the phone to the husband. Enough is enough God. Give a girl an icecream!!!

Laughs aside for a minute.

I love sharing our story with you all and you will never fully understand how this blog and your comments have kept my head continuously above water. Without this blog in the last 15 months I would quite literally have gone insane.

If you read this blog through Twitter or Google plus there is no problem. However, if you read it through the CHRONICLES OF A LUMPY PERSON page on facebook (as most of you do), there is a problem. Unless you like and/ or share a post every so often , I am unlikely to remain in your news feed. To give you an example- I have 551 followers on my facebook page but only 40 % at the MOST are being shown the posts. It's very frustrating!

 Please help me get my story out without having to pay the money Facebook requires.

The girls and I have just been to see a movie together. It's the first time in ages that the three of us have been able to do something together socially and it felt good being with my girls. One has finished uni for the year. The other is almost done with her acting course. In what continues to be an annus horribilis, it is good to do something " normal" together. It's been a while!

Till next time...xxx

PS: Remember - those on the facebook page need to like and/ or share.

THE POWER OF BACON

It's been a while since I wrote a story. This is mostly factual and yes...I'm Emma. I just wanted to be someone other than myself for a moment.

THE POWER OF BACON

Emma reached for her latte and sipped the hot, milky liquid as she gazed over the sparkling Indian Ocean. It was a beautiful day despite a little chill still in the air. It obviously wasn't quite summer yet unless of course you owned a wetsuit, in which case it was summer all year long.

The arrival of food stopped her rambling thoughts. Luckily for her it was still breakfast time and she could get a bacon and egg sandwich.As usual in times of stress she reverted to the " bacon fixes everything" notion, held by everyone in her family from nanna downwards. Broke up with someone?Smashed your car? Lost your job? Bacon was her family's version of a Maccas run...a piggy bandaid that fixed all.

But bacon wasn't going to fix the problems Emma had and she knew it. No amount of yummy piggy was going to help find out what was wrong with her daughter or make her feel better about what was going on. Tomorrow would come whether she ate bacon or not.

Tomorrow was a test. Another test on top of the hundreds of tests her daughter had already had...in a new area...in her thyroid gland. Emma choked back the sobs. She hated seeing what her daughter was going through and hated feeling that in some way this was her fault. Her fault because unbeknown to her at the time, she had passed on a faulty gene.

The bacon was delicious, not too salty and not too crunchy. If only her life would take a leaf out of bacon's book and be not too complicated, she thought to herself.

Below the cafe window, the wetsuit wearing few had ventured into the water with their boards. It was quite the sight and one she never tired of. She wondered how her daughter was feeling and if she really understood what a biopsy entailed. Memories of her own two biopsies long forgotten were suddenly crystal clear once more, as was the surgery which followed.

" You don't have thyroid cancer" said the doctor gruffly, two weeks later. " You look disappointed", he continued.

Instant relief merged quickly with a type of anger she had never experienced before. Her husband felt it too and held onto her hand tightly.

Even now years later Emma felt her shackles rise. What sort of a doctor tells a patient she looks disappointed not to have cancer? What sort of a doctor confuses a bewildered look with a disappointed look. She had convinced herself it was cancer like her sister had. She certainly wasn't disappointed to be wrong...just bewildered why she had been let off and her sister hadn't.

But she hadn't really been let off had she , because seven years later the word thyroid had resurfaced. Just like the word nodule had resurfaced. Just like the statistics had resurfaced. Except this time...it was her daughter's turn and she could do nothing but look bewildered once more and experience emotional pain far greater than her own situation had ever given her.

The bacon was finished and the latte dregs had turned cold. Emma reached to her neck and followed the large incision that told the world she was thyroid less. She remembered how ignorant people had said she tried to take her own life. She remembered how they laughed when they found out they were wrong and how they told the story anyway.

The surfers returned to shore as Emma paid for her late breakfast and walked to her car. She willed the nodule on her young daughters neck to be benign, to be not important, to be much ado about nothing, to be a storm in a teacup. She willed the experience to be over and done with and for her daughter's doctor to be kind in soul and spirit.

There was only one other thing she could do. She would make her daughter bacon and eggs for breakfast. Nanna would have approved.

THE END

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