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Feeling Ostomistic
Tuesday, December 02 2014

It isn't very often that I have a moment or two spare to just sit and dwell on my thoughts... actually I try to avoid it if possible as it can often cause more harm then good.

It is moments like these that I often think to myself if I could go back in time and meet my younger self (gosh I sound so much older then 23 right now) what messages or pearls of wisdom would I share?

Here are my 5 things I wish I could tell my younger self:

1. YOU are worthy of being loved!
You might think this sounds strange, to tell your younger self that you are deserving of being loved. But if you have grown up not really knowing that you are loved and aren't worthless you will become a young adult that is so insecure, that one day you worry that you just won't be loved anymore. I can tell you I know what it is like not knowing that you are loved, appreciated or worthy of being loved until you happen to be buying a computer and this older, quirky, nerdy, HOT AS and funny computer salesman decides that he wants to spend the next 2 hours trying to sell you a laptop and chatting (I really mean flirting) with you.

You will leave the store with neither a laptop nor his number, and will go home and feel sorry for yourself. You need that laptop as you will become so frustrated with how slow your much loved "Toshi" Toshiba laptop has become since recently finding itself in your bedroom that was inundated with flood waters. You try and perservere for 2 months with your Toshi gradually dying, and just try to work up the courage to return to that shop, hope the hot salesman that rejected you does not remember you (or see you) and that you will leave with a laptop.

But before you return to the store, be sure to cut your hair short and dye it a deep red/purple colour (trust me you will ROCK it) and then return to the store.

What you won't realise is just that once he turns and looks at you he will instantly recognise you and acknowledge you by name. You do let out a loud "oh fuck!" and try to hide your embarassment.

But my dear, don't fret because you will leave the store that day with not only a new Toshiba "Toshi 2.0" laptop but also with his number, which you arrange a date a few nights later.

You will soon realise what it is like to have met someone who is so caring and doting and would honestly take a bullet for you. He will surprise you and your family by sitting with you a month after you start dating as you go through brain surgeries over the next 3 months in hospital.

He will surprise you 3 months after you start dating when he calls and says "Guess what I just bought?.. A $5500 engagement ring!". You will be shocked and instantly feel upset as you thought everything was going great but he must of been in love with someone else as surely that ring isn't yours.

But it was, and surprisingly your overprotective father will let you become engaged at just 18.

You will marry on your 1st wedding anniversary, a ceremony that is low key and intimate with a bigger party/reception with your family and friends. The day will have its many hiccups, which you will just laugh about afterwards.

You will go through many, and I mean MANY obstacles in the first 5 years of your marriage which only will make the bond and love you share deepen. You will be paranoid that it will all become too much for your husband and he will want out, but he tells you to stop being silly and when he says he loves you, you can tell he really means it.

So while it may seem right now that you are alone and that you won't ever find the happiness that your friends have or feel like a freak at school because you are the only one without a boyfriend, you're prince charming is only a couple of hours away waiting for you in a computer store!

2. As soon as you are old enough, get life insurance!
You may roll your eyes at me for trying to have 'that' grownup talk with you, but it really is something that you need to organise before it is too late. Don't wait until you get married to look into it, or when you start trying (and failing horribly) at falling pregnant. You need to do it as soon as you are eligible.

See, what you (or our dad) don't realise is that deep down in our DNA we literally have a ticking time bomb within us.

You will have been told by Dad weeks before your wedding day that he is unwell but getting tests done. But you won't realise until your actually walking down the aisle arms linked that there is something seriously wrong. You pester him the whole time you are walking towards the waiting guests about what is wrong as you notice in 2 weeks since you last saw him that he has dropped a lot of weight. You keep pestering him and he will keep sternly replying "Not today Pumpkin" followed by "I am not doing this today, this is your day and we will talk about it after your wedding". You know deep down something is wrong but you put on a brave face and continue walking what feels like forever to your wedding. Be sure to cherish and take in the moments from that day.

A week after your wedding you get a phone call from dad asking you and Russ to drive down tonight for a "urgent family meeting". You know that in your entire life, not once has there ever been a family meeting. You know something is wrong....

You learn that your dad is terminal with bowel cancer and only told he has a matter of years with agressive chemo left. He waits until your siblings leave the room to process it all, and he informs you that the type he has is extremely rare and it is also inherited. The punch line is that he is confident you too are a carrier.

Now if you haven't organised your life insurance by this point you better do it now, as once the genetic testing and colonoscopies start in the next couple of weeks and confirming you do indeed have FAP, you will be void of any life insurances as it now is a known medical condition and the insurers are smart enough to know that FAP will more then likely lead to cancer. So you are too risky to be insured.

You will be overcome with guilt forthwith as you have nothing but debt to leave your husband if you were to die today. You feel terrible that you won't be able to help support him or look after him when you're gone.

You will have WISHED someone told you to get life insurance.... that's why I am telling you now!

3. Fight more for your health!
You will be bedridden for days each month, which means missing school and work and being in immense pain from your periods. You know that you aren't the same as all your friends as you were very young when you first got your period and it has always been painful, but you were told that it was normal.

You will see doctor after doctor to try and identify why you have such bad pain, why you vommit for days, and why you have diarreah when you get your period. You will be told again and again that it is normal and not to worry.

You tell doctors for years that you are certain you have endometriosis, but only told that "young people don't get endometriosis" and that again "this is normal".

You go through this horrible time for years and you will give up on fighting for answers until you are 21. You will have been referred to this incredible OBGYN who after a thorough consultation with you and your husband, books you in for an invesitgative laparoscopy, hysteroscopy and cystoscopy the following week.

You go in for your surgery and wake many hours later to be told that "you have severe stage IV endometrisosis" and that "it is one of the worst cases I have seen in my career". You will be advised that due to the extensive damage caused involving removing a 15cm mass from your right ovary, 7cm mass from your uterus and hundreds of 1 & 2cm masses from your pelvic area, that it is advised to go through a 6 month course of a medically induced menopause to let your body heal.

You will have wished that you fought harder from 12-21 for answers, as this level of damage could have been avoided and possibly could have still allowed for you to conceive naturally.

Don't listen to the opinions of 1 doctor and demand to see a specialist.

4. Get health insurance
Although it isn't something that you see worthwhile or value in, it is something that you are going to NEED and I mean RELY on!

See, you never thought about health insurance until you needed it (just like life insurance) and as you will have learnt you have a pre-existing condition, you will need to serve a waiting period of 12-18 months before you can claim.

Ever heard older people complain about how horrible colonoscopies are? Well trust me when I say they are! You are going to need A LOT of these and there will be a few that needed to be done urgently and requiring you to pay $5k as you are still serving your waiting period on your health insurance and the public waiting list is too long.

But there are some great perks to health insurance! Like getting your own private room where available, having your surgeon/doctor of choice, getting the TV on free of charge, Having the paper delivered each day to your room and having proceedures done when they need to be done rather then waiting. Don't forget the health insurance pays for your ambulance rides too!

Oh and don't get me started on the private hospital! Imagine a resort, but it is a hospital... seriously! The nurses are so much less stressed then over at the public hospital and are so lovely and patient. THE FOOD is something you would pay top dollar for at a restaurant. My first night I had roast duck... I had never had such a delicacy before! There were even other awesome incidentals too like FREE wifi and Austar too!

But the best part of having private health insurance is the privacy and peace of mind. You know you have your doctors who know your case and you trust with your life, but also when you have your bowel removed when you're 22 you will find it much better being in a private room then a public room with 4 other patients (including men) and not having much support.

So be sure to organise it before it was too late, as it will save you so much money too!

5. Spend more time with Dad & understand just how much he loves you
Although you speak to him everyday and are close, you will be wishing after he died that you had spent more time with him.

Be sure to tell him you are sorry for all the things you were forced to do and wished you didn't.

Make him know that you love him and just how important he is to you.

When he lectures you for stuffing up, don't take it as him thinking you are a disappointment or a failure, take it that he cares enough about you tell you that you stuffed up and listen to his advice. He will pass on many, MANY words of wisdom. Listen to him as he know's what he is talking about and isn't just saying shit for the sake of it.

When he invites you camping or to do family stuff and you decline becuase you have to work, take the time off work because those will be memories you wished you had.

Laugh at his jokes and at his quirky and often embarrasing behaviour. You will realise how much you miss his laughter, and miss him everyday after he passes away. 

Don't try and get his attention by doing things that will make him mad, and worst of all DON'T lie to him. Always be honest with him, he won't always believe it is the truth when it is, but it is so much worse when you keep things from him (like hiding a $900 fine you got and lost your license the day after you got it).

Appreciate just how much he cares about his kids and how much he is willing to help you when you need it. Appreciate that while your dream was to move to Brisbane and go to uni as soon as you graduated (so you didn't apply to the university closer to home) that your dad had other plans. When you ring to tell him you stuffed up big time and Brisbane was a mistake that you didn't get into uni, he will then tell you that he went behind your back and applied to the university closer to home and that you got a full commonwealth supported place and you start in 2 weeks. You will then realise just how much he loves and cares for you and even when he knows you are making a mistake, he still makes sure you have a plan B (even if he doesn't share that with you).

Just if you get angry with him because he won't let you go out with that boy you like (but knows he is trouble), wear makeup, or tries to be over protective - just remember that life is short and he won't always be around, so don't waste time being angry over little stuff just know he cares enough to protect you.

So younger self, while these are the 5 important messages for you I have some short/brief ones too!
* Don't speed- it isn't cool and it is embarrasing when you have no license for 6 mths and have to rely on everyone for a lift!
* Don't get into debt -  yes it is very tempting to have that new car and credit cards but trust me you will regret by 21!
* Learn to save more!
* Stop smoking - not only is it bad and expensive but it is gross. Trust me when I say you'll find other things to release your stress!
* Don't study so much - looking back 20 hours a day spent studying is just crazy! Enjoy life and enjoy having friends, they won't always be there for you, and you will wish you were less alone!
* Don't worry about trying to fit in - once school is over you won't ever see or speak to those bullies again, they are only apart of a brief period in your life!
* Do more of what makes you happy and stop trying to please everyone, you will only be left even more unhappy.

As dad always would say "Always remember Pumpkin,
that no matter what happened today the sun will come up tomorrow".

Posted by: Talya AT 09:33 am   |  Permalink   |  Email

~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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