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.

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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

YES... I'M BUSY LOOKING AFTER ME!

A lot of people have asked me how I keep myself busy now I'm not working. Its an innocent question I suppose, but one that nevertheless makes me feel that I'm  being judged. For the record, I am busy and I am not bored.

Life is however a lot different.

Let's look at a few things, starting with the kids. When I left them in the city at the start of the year I was heartbroken. I still miss them terribly but am no longer heartbroken.Thanks to technology my kids are with me 24/7. If anything, I have more communication with them now than before. Let me give you an example. There is the landline, the mobile, texting, Facebook, messenger, face time and Skype. My daughters use them all and one of them is capable of using all seven in one day (guess which one!). I forgot snail mail...she has been known to use that too. No, I actually talk to them more now than when they lived at home and all I got was the odd teenage grunt. Maybe its because they're growing up or maybe absence DOES make the heart grow fonder.

Another change is that when I worked full time, I used to have a cleaning lady. That freed me up quite a bit back then. No cleaning lady now and though I will always miss you Jasmine,  I do a lot more housework now. I actually quite enjoy it. Those cupboards I have wanted to clean for ages - done! Those clothes I wanted to sort out and give to charity for years - done! New blinds in the bedroom. Only took 20 years but done too!

So, that's also keeping me busy!

Another change is that I used to cook a lot, both at school and at home. But these days I keep it really simple and only when necessary. The husband was looking for something to have with a cup of tea the other day. Poor thing hadn't eaten for two hours and he was withering away. 

There was unfortunately nothing sweet to have and he's not used to that. I always used to bake, but I rarely do now unless its a one bowl creation. I don't have time or interest any longer and am much more aware of the connection between health and food these days. I also am aware of my own limitations eg with no kids at home either the husband or I will eat the whole batch of biscuits or the cake. No thank you.

( Incidentally, before I have an uprising of the six sisters in law, I always cook a healthy dinner. He is very well looked after!)

I suppose where there was a full time teaching job there is now my writing and my blog. I am administrator for two Facebook pages - COWDENS SYNDROME AUSTRALIA and CHRONICLES OF A LUMPY PERSON. (Yes, I'm on Facebook if you didn't know that before!). I also belong to a couple more Cowdens support groups and a number of blogging groups on Google plus. I try not to sit on my butt too long, but some of these pages and groups are so interesting. And, reading other peoples blogs is addictive. Honestly, try it.

Other changes?

Well, I am a poor sleeper. Now, I can sleep in and have a nanna nap during the day if necessary. No more struggling to work exhausted. Stress and tumour growth go hand in hand for me.
I have time to sit in town with a coffee and think or meet someone for a coffee if I want to. Quiet time in a sometimes chaotic life.
I can go for a walk anytime I like...yes family, I do walk.

I can watch Ellen and the midday movie. I don't really do that much but I can if I want to.
I can go out with the husband to see a movie and have a meal. We do that once a fortnight now. We didn't do it once a year when the kids were growing up.
I am starting some community service soon and I am looking forward to meeting a few new people.
Best thing, I can drop it all in a few minutes and drive to the city if needed and if there is a medical crisis. That reduces the stress on me a lot.

Yes, life is different. The challenge for me according to my psychologist is to care for myself in this way and to do it all without feeling guilty. I'm working on that, but its taking time. My whole self worth is tied into having a job and earning money. Its hard to change those feelings overnight, but its harder to maintain my old pace AND deal with all the crises this family has faced ... without eventually falling apart.

Hope your self care is good. If anything here makes you think about yourself, my job is done!!!!

Till next time...xxx

THE ART OF TALKING

A few years ago I had a young indigenous boy in my Home Economics class who had limited spoken English and zero concept of time as dictated by clocks and calendars. He was part of the football academy at the college and was much better at football than English, or Home Economics for that matter.

One day the following conversation took place. I have told this story so many times it has taken on legendary status in my family, with the girls able to repeat it word for word.

Me: Are you in class next Monday?

R: Mebbe ( he means "maybe"... for the uninitiated).

Me: Aren't you going on camp?

R: Mebbe

Me: When is camp?

R: Mebbe Monday.(ie has no idea)

Me: So you WON'T be in class Monday?

R: Hmmm....mebbe (still has no idea).

Me: ( changing topic as getting nowhere quickly) - Do you like Home Ec?

R: (Quick nod of the head).

Me: Why do you like Home Ec?

R: ( Sudden English expert with pearly white teeth and megawatt smile emerges) - COS I GET ME A FEED!!!!

Absolute classic story and one which still brings such a smile to my face every time I replay it in my head. It's also a typical teenager story where words are used minimally, unless there's something in it for them or they too are channelling their inner English expertise. The latter only happens when some mere mortal ( usually a parent or teacher) has pushed their buttons one too many times.

Good morning

Grunt.

Did you sleep well

Grunt.

Would you like some breakfast?

Grunt and quick nod of head.

Do you really need to be on your phone at this time of the morning?

Cue sudden English expert! (aka torrential verbal downpour).

I come from a long line of conversationalists. I am Maltese by background and I don't think I have ever met a Maltese person with an inability to strike up a conversation. Well, certainly not in my family anyway!

When my extended family is together there is no grunting, no nods of the head and no need to channel inner English expertise, as we are all professors. We talk at the tops of our voices, over each other and all at once. We laugh hysterically and talk with our hands at all times. I will never forget an Australian friend who visited Malta and on his return said " I understand you all better now. Everyone over there was just the same!"

( Hmm - note to self - did he think we were abnormal before???)

When I started teaching I used to get in trouble for talking too loudly and too forcefully. My boss regularly reprimanded me, but I could never
figure out what was wrong as I spoke the same way to everyone. Advantages - I never needed a microphone at assembly or on excursions. Disadvantage - kids were entranced by my hands and spent more time watching my hands " talk" than listening to what I was actually saying.

The art of conversation seems to be dying out. You can now order a pizza, book a GP appointment, make dinner reservations without speaking to anyone. You can order clothes online and even have a fight with someone all without opening your mouth. And the bit that makes me laugh - in a new relationship first you get to know each other online and then use of voice is stage 2...if at all!

I took the girls out for breakfast last Friday. We sat down and both automatically reached for their phones. Risking an explosion of " sudden English expertise", I asked them to put their phones away. They took a couple of extra minutes and then obliged. And it was lovely. I love hearing about what's going on in their lives and minds and seeing the repartee between them. They make me laugh so much. You don't get body language with texting and stupid emoticons.

This coming weekend my family will be welcoming our young cousin who is arriving for an extended stay from Malta. Warning Australia...the noise levels are going to get louder and there are going to be more hands flying around everywhere. My vocal chords and hands are ready for a good workout! Duck for cover folks!

And finally...I'll leave you with this.

John Wayne was obviously NOT Maltese.

Till next time...xxx

SUNSETS

The girls flew into town today to attend the funeral of their beloved cousin. It's been a long, hard week but its a bit better knowing that we will all be together at tomorrow's service.

The strength and unity in this family has been amazing. There have been numerous opportunities to share not only tears but happy memories. Some gathered tonight to watch a spectacular sunset and remember the young woman who used to surf in the water below. It was a lovely idea except for the bit where I realised we were watching from the top of a sand dune with a sharp incline. I am so unfit! If you saw someone lying face down in the sand, half way up the sand dune, that may or may not have been me.

But I got there!

And when my heart rate calmed down and I had promised the husband to do something about my fitness, I was rewarded with the most amazing sunset. What better way to celebrate the life of a special young woman than with Mother Nature showing off her beauty in this manner.

And then all too soon it was time for another sunset of sorts and to remember a woman, who as the priest said "was smiling in every photo". In a supreme display of inner strength both parents and brother delivered the eulogy together. I had the privilege of reading the following beautiful words which will be familiar to many.

Death makes us so much aware of what we have and I am determined to enjoy every minute of having the girls home, except for maybe the inevitable mess that accompanies their every move. I have no idea why they store everything on the floor!

The wake yesterday was the first time many of the family had caught up with my girls in ages. My favourite eldest daughter (FED) and my favourite youngest daughter (FYD) were kept busy repeating stories about their health and studies. It made my heart so happy to see the FED especially looking so well,and having some special time with her cousins. I really missed my cousins when I came to Australia and I love seeing my girls surrounded by theirs.

Before the girls leave to go back to the city, we are starting the process to determine whether they have or do not have Cowden's syndrome. Its something we have thought about and talked about at length and as neither daughter seems fazed by a potentially positive result, we are going with it.

I have my suspicions and I hope I'm wrong. But as usual, it is what it is and we will deal with whatever comes our way.

Till next time...xxx

PS - Guess which blog turns 1 soon???

ORGANISATIONALLY CHALLENGED

In a week that's been so full of sadness a simple conversation brought a smile to my face ... well sort of!

Me: what shall I get my friend for her 50th?

The husband: what did she get you?

Me: I'm 48!

Honest to goodness. Do men notice anything? Do they remember anything? Here is another:

Me to husband - when is our wedding anniversary?

Husband - July 23rd ( it's July 13).

Me: wrong

Husband - is it June or July?

Me: not telling. You were there. Remember!

                                          Husband: you're trying to trick me

                                          Me: ( sigh).

It's lucky I love him.

Two other young people I love dearly ( our daughters) will be home this week to attend their cousin's funeral. Telling them their cousin had passed away was right up there in the difficulty level. If I was playing a game I'd now have bonus points for having got through that. It's not something I want to repeat in a hurry.

To be able to attend the funeral, the FED ( favourite eldest daughter) and I have had to reschedule two doctor's appointments with the gastroenterologist (me) and with the interventional neuroradiologist (her). That's the doctor who saved her life and one of the ones who checks in on mine every so often. The appointments have been in place for ages, but when life gets in the way like now, we have to reschedule.

Making appointments (and rescheduling them if needed ) is a logistical nightmare for anyone with Cowdens syndrome or any rare disease for that matter. As constant monitoring is needed in so many areas, this task is not for the faint hearted. Simple patients become organisational experts, planning and re planning a number of dates to suit kids school schedules, work commitments, doctors holidays etc. It's a very lonely experience for most. You may ask why the doctors don't do it for us? Its simple really. All the doctors think someone else is doing the organising and coordinating and therefore don't offer to do anything themselves. In reality also, most of them have little or no knowledge of the condition and don't realise how " on the ball" patients have to be.

If you're lucky ( and I am), a good GP helps to coordinate most of it. but even in my case I do most of the research about what needs to be done and how regularly. I also keep tabs of where we're at and what's next.

Just to give you an idea. At the moment for ongoing care I have a plastic surgeon, a respiratory specialist, a neurologist, a psychologist and a gastroenterologist. On other occasions I have needed a surgeon, an oncology gynaecologist, a haematologist, a thyroid specialist and a women's specialist. You get the picture. Add into the mix (in the last 14 months) my daughter's appointments and surgeries and you start to realise why at the moment I can not hold down a paying job.

A mother of a daughter diagnosed with Cowdens syndrome recently posted a heartfelt message on our support group page. With her permission I have published some extracts because it shows the frustration we all feel so well.

I'm really quite sick of this whole rare business, all the advocating, being blamed for health issues, not being understood and never finding any specialists who really get it or can answer your questions. I asked one about endo screenings and what age this may be necessary. She said "I don't know but ask your paediatrician ,after all she is the one that coordinates all your daughter's healthcare." Ha ha if I didn't want to be rude I would have fallen off my chair laughing. NO ONE COORDINATES ANYTHING, I do everything. If it was left up to them my daughter wouldn't even be diagnosed let alone getting any proper healthcare.

and

My daughter already has had so many health issues that apparently don't happen to children. I AM just over it at the moment and I guess it's been a long week. Sometimes I just feel so alone, it's like living on another planet and no one you deal with ever understands. 


 If you know somebody with a rare disease or somebody caring for someone with a rare disease, chances are that beneath the exterior someone is trying very hard to keep it all together. Just give us a smile and some leeway please. We're often exhausted, frustrated and as my friend says " over it".

Till next time...xxx

THINK AND TALK...PLEASE

The topic of death can be a touchy one. Well, it certainly is for me. I don’t feel comfortable talking about death… which is tough really, because it is the only certainty we can expect in life.

I suppose I feel that if I don’t think about it or talk about it, it will never happen, neither to me nor my loved ones. It scares the hell out of me.

My first dealings with death came at about the age of 22. I was a young teacher in a school that was in mourning for a young life taken on the road. I remember the nuns issuing us with instructions on how to deal with grieving kids. I sucked at it. It was MY first experience at death and like the kids I too needed consoling and instructions on how to deal with my own grief.

A couple of years later my grandfather passed away. Although I had not lived in Malta for many a year I was sad beyond belief and more so when I could see and hear my father’s grief. I think that’s when the finality of death sank in. I had memories of reading books and looking at stamp albums with my nannu in his secret room. I realised that I would never do those things again. 

As the years passed I matured and toughened up. I had to. I worked in a country college and for a while accidents on the road were rife and funerals for lives lost too early, were plentiful. As part of my job at the time I had to organise a school mass for one student who had passed away. It was the first time I directly disobeyed an order from a boss. She had instructed me not to play music at the mass which would make kids cry. I ignored her and played what the Yr 12 cohort of the time wanted. She spent the whole time the song played trying to get my attention. I was too consumed with grief to care. Having taught the child for five years straight, I like many of her other teachers felt like I had lost a child of my own.

When I was diagnosed with breast cancer in 2008, I initially never thought about death. For those of you who have followed my blog since the start you may recall me writing that I was angry. I was furious in fact. But, I never thought about death.

That hit me one day in a crowded shopping centre when I came face to face with a book celebrating the life of a woman who had passed away from breast cancer. It hit me straight in the face, between my eyes and into my brain.

This was what I had.

I ran out of the shop and sat in the car and cried and cried and cried. I was terrified.

At times like this I have been glad for my faith. During the months of my illness and that of my daughter, I have repeated the mantra – “In God’s hands”. At the worst times I have repeated it over and over, calming the panic rising in my system and giving me some peace in the knowledge that someone was in charge of this chaos.

This week death came to visit, taking with it my lovely niece way too early. Left behind are parents, a brother, a grandmother and a huge family all shattered with grief. She was still young and it was totally unexpected.

I didn’t think about it or talk about it and it still happened. And I’ve realised a few things…too late in this case but regardless.

     I need to think about it and live a life of no regrets. I need to do things I want to do and go places I want to go. I need to live as full a life as possible and not turn around one day and say “I wish I had….”

  I need to talk…not necessarily about dying but to the people I love. As a Facebook status said this week , “Leave nothing good unsaid”. How true. Keep in touch with people. Am I the only one guilty of being too busy?
 

It’s been a sad week and one that’s brought up a lot of feelings and memories.

Think and talk...please.

RIP my beautiful niece xxx