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Feeling Ostomistic
Monday, August 20 2018

I think this title is appropriate as we were served chicken for dinner at the awards night, sorry just being cheeky.


Me holding my award and framed certificate

On Friday the 17th of August, Russ and I drove up to Brisbane to attend the 2017 Great Comeback awards held by Convatec. I know we are in 2018, but it was 2017 when I applied and so the award is for last year but it is in this year which is confusing, but anyway, I won!

I was 1 out of 5 finalists from Australia and New Zealand.

It was such an honour to have been made a finalist, and I was incredibly shocked and surprised to have found out on the night that it was me who had actually won! There were so many deserving and inspiring finalists who have incredibly powerful stories to tell.

On the night at the awards ceremony, which was held in the brand spanking NEW boutique hotel called Emporium Hotel South Bank (I am dedicating a whole separate blog post to this, so stay tuned), there were video interviews of each of the 5 finalists presented. Each video is around 2 minutes long and consisted of images or videos being added in to share in the impact of the story.

I was in tears watching the videos, then mine, which was last to be presented, had me in a complete blubbering mess. I was so embarrassed as it was MY story and I know this sooooo well so it surprised me that it impacted me the way it did. I assume it was a build up of emotions felt on the night, I was incredibly anxious but I was also very overwhelmed, so once the tears started I couldn't stop.

I am sharing my video to facebook, but it is available on youtube too and will embed it below at the end of this blog post.

Please keep in mind that the original video was 22 minutes long and was chopped down to 2 minutes for the ease of viewing, so a lot of important points I made were missed. I did also thank my friends and family and also those who read my blog and  my tribe who encourage me (you guys), so I don't want anyone to be upset if they didn't hear it mentioned (because it was).

If you have an ostomy, or know someone with an ostomy who has a story to share and have done something inspiring or had a comeback post ostomy life, please let them know about the awards. It could be something like pre ostomy life you were too sick to travel so once you had an ostomy you travelled, could be you returned to work, you did something you have always wanted to do, you started a movement to inspire others, you went back to uni and graduated, or you found yourself and the joy of life from having an ostomy.... or it could be whatever your heart desired that you feel you made a great comeback thanks to your ostomy.... 

The Great Comeback is entirely your own comeback after ostomy life and could be anything, or could be a number of things, it is different for each person.

To apply you need to submit your story via the site, you do need to include certain aspects of your story pertaining to:

  • How life changed or was affected by your/their medical condition and having an ostomy
  • How you/their Comeback was achieved and the positive effects that have resulted
  • The role that others (family members, nurses, surgeons) played in your/their Comeback
  • Any current activities or interests that you/they are now able to enjoy or participate in, and any specific dreams or goals that you/they have accomplished or wish to accomplish in the near future
  • The learnings or advice from your story that others might find beneficial

I wrote my story out first in a word document and then copied/pasted it in the appropriate sections. I used the aforementioned topics as headings for each part of my story.

**Please note: the drop down box doesn't have NSW available to be selected, they are aware but have said to choose any state but write somewhere that you are from NSW. They are in the process of fixing this error up along with updating their site too.

If you have a stoma nurse who is amazing and deserves to be recognised, please nominate them too! 

If you have any issues with your or your stoma nurse nomination, please reach out to convatec directly via email

My video:

I do encourage everyone to apply, the program is a great way to not only share your story but to meet other members of the ostomy community. The awards are all about empowering and inspiring ostomates that there is still a life to be lived and enjoyed after surgery. I had a lovely night, which I will share in more detail in a blog post to come. 

Thank you to Convatec and the judges for choosing me as the 2017 winner and I can't wait to see what is to come.

 

Posted by: Talya AT 12:52 am   |  Permalink   |  Email
Friday, June 15 2018

Today has been a massive day, I have been running around from appointment to appointment between the cancer centre getting my port flushed and bloods checked to getting my long overdue hearing check done. As part of my promise to spend time this year doing things for self care and prioritising me, this appointment was on the list.

I felt rather relieved to have finally had the appointment, moreso for what came next.....

I knew I had hearing loss in my left ear and knew it for a while, part of putting off the appointment to getting them was out of fear for the cost. Ever since I was 18 (2009) when I had the cysts on my brain I noticed hearing loss then, something to do with the pressure in my head, which has only gotten worse over time. Then when I had chemo I noticed with most things about my health, that it deteriorated more, so I feel for my neighbours as the TV is always so loud but I also feel for those I have hurt because they felt I ignored them or the conversation or that I was rude because I sat in silence.

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But today I went and had my test and found out that I was eligible for free government subsidised hearing aids that I needed to pay $45 a year for batteries and servicing.

So today I got fitted and chose the colour and style, then in a fortnight I will get them as they have to be ordered - they will be fitted and I will be shown how to do it myself and then I have them for a fortnight to test run and make sure they will do what I need them to do.

If after a fortnight I am happy with them I accept them and they are mine.

It was a little overwhelming being told that I am eligible for hearing aids, not from a vanity perspective or worried for my looks, but because I can finally hear again and not miss out on conversations or pretend I understand and can follow along.

It gets so exhausting if I go to a family function or a social outing, even just a dinner date with Russ, if there is too much noise I can't hear and it gets tiring trying to focus as well as focus on not being in pain, and I tend to just sit there not saying much and can be labelled as rude, but it is just so so hard.

So I almost cried when I learned that I could be hearing in a matter of a fortnight.

I am hopeful and excited, I have needed this for so long.

I am not upset or worried, I am just grateful for our health system and that there is subsidised hearing aids that don't do fancy things but do just what I need and that is okay, would have loved to have gotten purple but Russ found a colour that would blend in with my ear and hair so won't stand out too much.

So I am okay, I am just grateful for all the new possibilities coming my way.

I learned years ago to never take hearing for granted and have been grateful I still had hearing but was just hard to hear in one ear.

So if ever you felt I was ignoring you or being rude, I most likely just couldn't hear you.

Posted by: Talya AT 11:47 pm   |  Permalink   |  0 Comments  |  Email
Monday, May 14 2018

NB: SORRY THIS IS OPEN FOR AUSTRALIAN READERS ONLY

It is here!!! It is finally here, the time you've all been promised is here.....

Introducing the:

Epic self care and self love package for one to be won by one of you!!

Firstly, thank you to all of our kind and generous businesses without whom this would not be as epic or love fuelled as it possible is.

✰ To see all the prizes - click here

To enter the competion:
Please do so below via the widget answering a question which will be judged by a panel of secret judges chosen by myself.
♥ Then please like or follow the businesses on instagram and/or facebook by clicking on the links below, as a way of saying thanks. 
  Please note : THIS IS OPEN FOR AUSTRALIAN READERS ONLY, sorry
♥ YOU have a week to enter, comp closes next Wednesday 13th June! So hurry!

You'll love their feeds!

Feeling Ostomistic Epic Self Care for One giveaway

Please Visit and like/follow the following businesses:

1. ✰ Gorgeous By Carly: click here for facebook     click here for instagram

2. ✰ Sugorma: click here for facebook     click here for instagram

3. ✰ Chatterbox_City: click here for facebook     click here for instagram

4. ✰ The Love Letter Co: click here for facebook     click here for instagram

5. ✰ Sophie Guidolin: click here for facebook     click here for instagram

6. ✰ Pink Pom Pom Printables: click here for facebook     click here for instagram

7. ✰ Salty Fox Co: click here for facebook     click here for instagram

8. ✰ The Scenic Route: click here for facebook     click here for instagram

9. ✰ Kiss and Co: click here for facebook     click here for instagram

I am so excited to offer this, and remember it is only for a week only, so hurry!! Due to postage restrictions this prize is only available for Australian readers.

Posted by: Talya AT 10:02 pm   |  Permalink   |  4 Comments  |  Email
Sunday, May 13 2018

NB: SORRY THIS IS OPEN FOR AUSTRALIAN READERS ONLY

For as long as I have had this blog I had set myself two milestones I wanted to reach:
1) reach 1,000 on fb and 2) celebrate 5 years blogging!

I know these might seem like small or insignificant goals, but to be honest when I first learned I was 21 had early stage bowel cancer and would require a permanent ileostomy for the rest of my life - I didn't know if it would be a blog worth following, because it wasn't sexy and appealling, so I worried if anyone would read my blog or engage with me or if they would judge me. I was worried I wouldn't be accepted and that I wouldn't help anyone. It is such a sensitive and private topic that I felt so vulnerable putting myself out there so openly.

All I had ever set out to do this blog was just to help at least one person, and I know in the past 5 years I have done that! AAAAAnd I found MY TRIBE of people who love and adore me too.

This week I also celebrated 5 years since my total colectomy and the moment I became an Ostomate for LIFE! I celebrated each of those extra days and minutes I have had with pure joy and gratitude, as much as my stoma changed my life it saved my life too. 

My stoma has helped me to have these extra days and years, and my blog became an outlet for me to share my experiences and hope to empower and help others on their own stories.

I am so grateful to those who interact/engage with me on social media, many become friends or like family; they celebrate when I have a win, they share my sadness when I am in pain; they encourage and support me to live and celebrate life to the full - and I have.

So this giveaway is for YOU as my way of saying thanks.

I appreciate every comment, like, message and email and love all of the support, as I believe in the importance of saying thanks I am showing my gratitude with this HUGE giveaway for you. 

The ultimate self care package for One!

Prizes:

1 x Pair of Multi Marble Delight Earrings - Gorgeous By Carly

Get ready to sparkle with these pretties! Made from premium acrylic with a glitter top with stunning rose Gold findings to make them super classy too. No two pairs are the same due to the placement of the acrylic, these babes are definitely OOAK!
For more details or to see more of their stunning earring range click here!

1 x Ultimate Body Goodness Care Set from Sugorma
Body CARE SET - Love Your Body

 
Natural luxury body care to love your skin. Vegan, palm oil free and cruelty free. Enjoy Foaming Cleanser, all natural Body Oil, light and fluffy Body Cream and Salt Fusion Bath Soak and Body Exfoliant, to naturally care for your skin. A wonderful gift to spoil that special someone... you know you deserve this!
To find out about all of the items in this pack, click here!

 1 x Neck Wrap Heat or Cold in Boho Feathers - Chatterbox City
Wheat free, Odour free and doesn't sweat either.

Designed to sit nicely on your neck and shoulders & sectioned into 8 segments so that you receive an even heat. Use this pack hand free so you can still get on with your daily activities while getting your much needed relief or relax back and wrap it around your ostomy bag for a great tummy relief.

To find out more about this heatpack or to view the other innovative packs, click here!

 1 x 'Hey Beautiful' Love Letter - TLL collective
A letter of inspiration, gratitude, mindfulness and love, delivering a special & important reminder.

 

A reminder that YOU are Bright, Brilliant, Beautiful and Brave and most of all YOU are loved.
♥ A letter to remind you that self-love & self-care is essential and that you are deserving of your own authentic genuine love.
♥ Trust your intuition & have the courage to follow its guidance and if you believe in ANYTHING today… let it be YOURSELF.
To take a look in more detail at the amazing Australian made products included in this pack, or to look at their other packs perfect for yourself or to send as a pick me up gift to another, view their website here.

 1 x 'More than words' book by Sophie Guidolin
The perfect book to motivate and encourage you to dream big, More than Words is a collection of my motivating quotes and mantras.

 

Each page within the book details a beautifully hand-scripted quote to lift your spirits, change your mood and focus your goals.
The perfect size for bedside reading, to keep on your desk or take in your bag for daily inspiration, with a ribbon marker to save your favourite quote. I know I find great value in using positive affirmations.

If this book sounds like it is something you NEED in your life, you can purchase a copy for $29.95.

 1 x Set of 50 motivational & inspirational quotes - Pink Pom Pom Printables


This epic set of ultimate sparkly and girl power motivational and inspirational quotes, to print and start adding positive affirmations around your house. Perfect for anytime you need a boost of self-love.

  

Whether you're wanting to view all the 50 designs in this pack, or to purchase the pack yourself to print off as gifts when popped in frames, or to start filling your home or bedroom, office cubicle or even if you are studying and want to decorate your bedroom. The need for and use of these beautiful prints are endless.... and SO affordable too at 90% off RRP to buy all individually.

Head on over to Etsy to view the full details of this epic motivational package!

 1 x Pink and mint green car diffuser 'french vanilla' - Salty Fox Co
The perfect addition to your car, it will leave your car smelling fresh and pretty without being too overpowering. Even my husband feels pride for a nice smelling car.

 

What makes these beauties so versatile is that they aren't limited to being used just in the car! I plan on adding some to our walk in robe to help keep the room smelling fresh, could add to the bathroom or toilet, or sneakily throw in your teenage boy's room. But no matter what, you will be left feeling serene and smelling pretty too.

Head on over to their website to view all the different scents available and while you're there check out their other designs too!  ♥ All handmade and all so, very affordable!

 1 x 2 pack of Notebooks and a set of Greeting Cards - The Scenic Route
These beautiful pack of notebooks and greeting cards are designed by a local artist who draws her inspiration from our beautiful and colourful landscapes and flora and fauna of Australia. Taking the Scenic Route is all about choosing the path less travelled, slowing down and enjoying the journey, appreciating the scenery, and embracing a sustainable life full of colour and beauty.

 

Greeting Cards:
♥ 
Pack of A6 gift cards featuring eight unique hand drawn botanical artworks, printed on 300gsm recycled card.

♥ Perfect for all occasions, cards are blank Inside, each comes with recycled brown craft enveloped, and individually packed in a biodegradable clear cellophane pouch bound by a brown kraft paper bellyband.

♥ Made with love in Australia and printed on 100% recycled paper using vegetable based eco friendly inks.

 

Notebooks:
♥ 
Set of two A5 noteboooks featuring hand drawn botanical artwork covers printed on 300gsm recycled card. One lined and one unlined, front page features "This book Belongs to" title page with signature The Scenic Route illustrated border.

♥ Splash resistant cello glazed cover, 48 pages and finished with pink saddle sewn binding, perfect handbag size for all of your important notes and daydreams!

♥ Made with love in Australia and printed on 100% recycled paper using vegetable based inks.

 1 x Bath tea soak + candle + clay mask set - Kiss and Co
The perfect treat after a hard day and you need to unwind, this is the ultimate self care solution. Heat up a bath and add in some bath tea soak, apply a clay mask and light the candle. Talk about relaxing vibes!

Relax and unwind with our mini pamper pack. Including:
♥ Our bath tea bag - a floral bath soak with essential oils and salt from the Dead Sea it is designed to purify body and mind.
♥ Our Australian Pink Clay Mask - designed for most skin types, this is a nourishing and moisturising mask that will leave your skin glowing!
♥ Our Lemongrass soy candle - coming into the winter months it is such an uplifting scent, and will have your home smelling divine!

Talk about an epic prize pack to win!!! 

Are you excited? I know I am!!!

To enter click here!!

 

 

 

 

 

Posted by: Talya AT 03:25 am   |  Permalink   |  2 Comments  |  Email
Sunday, February 25 2018

Did you know: there is an International Day for just about everything!

Feb 20 was International Love your pet day, but that is just about everyday amiright?? It is made easier when your pet is beautiful, funny, compassionate, photogenic and clever.

Fabmewlous Dusty:

Dusty is my (well, I should say OUR) beautiful little ragdoll kitten who will be 2 later this year! He came to live with us when he was just a wee kitten and it was a matter of love at first sight, Russ and I fell in love with him straight away. He was just so, so tiny and adorable!

Dusty was so tiny he refused to go anywhere without me and often demanded I carry him or he slept on my chest, of a night he refused to sleep unless he was snuggled up to me in my bed and he has snuggled up to me every night since. He is like a soft, plush teddy bear but he helps to make you calm when he purrs.

We have been gushing over him ever since he came into our lives and will show off pictures and talk about him every chance we get and to anyone who'd listen... yes, we are THOSE type of fur-parents.

Russ and Dusty have their own special bond and routines, just as I have with Dusty. 

I can honestly say with my hand on my heart that Dusty saved me and has made my life significantly better! 

Life BD (before Dusty) was fairly lonely and boring, to be honest the days were long! 

But since, it has been filled with: love, friendship, so many cuddles to count, laughs and companionship. He senses when I am sad and forces me to cuddle him, he is incredibly emotive and he has the most beautiful big blue eyes that just melt your heart.

Russ leaves for work at 8am and I am no longer alone while he is gone for the day, Dusty looks in on me when I am sleeping and often is close by. He can even sense when I am in pain and unwell and is extra affectionate! Dusty also makes me laugh a lot and makes me feel so very loved.

Did I mention he is so clever too? He plays fetch with me everyday! I throw his toy and he fetches it and brings it back for me to throw all over again.

I never realised I could love my kitten as much as I could, I always never understood people when they said their cat is not JUST a cat and is a member of the family... that was until Dusty came into our lives!

Dusty is our child, he is our furbaby and he has helped to make our house a home. He greets everyone who enters with excitement and love and he tries to protect our home too, he also seems to know everything that is going on within our house often you'll find him at the door or window being a stickybeak. But his most important job is excitedly greeting Russ when he walks through the door after a long and hard day at work.

Dusty is famous:

So when OstomyConnection shared their "15 ostomates who love their pets more than anything" I was so honoured to see that not only did Dusty and I make the list, BUT we were number 1 too!

Pop on over and meet 14 other ostomates who share a precious bond with their pets, click the link here.

I have been sharing Dusty's shenanigans on Instagram and Facebook, he gives me so many reasons to smile and he has become a reason for many others too, often I am emailed and they make mention of how they love Dusty or when I run into someone down the street they say he makes them smile too.

He has THE BEST facial expressions!

You can find more of Dusty on my Instagram/facebook account under @feelingostomistic, he also has his own page @fabmewlous_Dusty on Insta and facebook. 

I am grateful to the joy and love Dusty has given me and I am sure it is one of the major factors in me still being here. He helped improve my spirits and my outlook on life.

The best advice people gave me when I got sick was that I should get a pet as they are the best therapy, I am just glad I listened! Maybe a pet will help you too!

 

Posted by: Talya AT 08:22 am   |  Permalink   |  1 Comment  |  Email
Monday, February 12 2018

Please Note: All views in this blog are my own (and I don't claim to speak for or on behalf of anyone other than myself)... also, spoiler alert if you haven't yet watched episode 14 of the Good Doctor. I am just sharing my dismay at how something that saved my life was shown so negatively inflicting a stigma that so many fight to erase.

I have finally got around to catching up on the most recent episode of The Good Doctor, which I was rather enjoying up until this week. 

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Let me start by sharing (an ironic) quote from the episode:
“Questions are good: Leads to awareness and understanding. Who knows, even acceptance.”
- Season 1, Episode 14 titled "She"

The irony is that they could have shown more compassion surrounding how they approached the idea and livelihood with an ostomy.

Instead, they made the idea of an ostomy as this tragedy and that it was THE worst thing to happen in life. I get that it is a show, it is made up, but it doesn't make those living with the conditions feel any better or at ease knowing "it is just a made up TV show that thinks this" when the reality is so many look down on life with an ostomy and struggle to see that a life can still be lived....

"I’d rather an ostomy in tow than a tag on my toe" - Talya Goding

I really was enjoying this show and often talked of the compassion felt in each episode, but this week I find myself as someone with an Ostomy to be disappointed in how it was perceived and quite angry too.

Maybe some more consultation from those with lived experiences could better make the show better.

Just an idea?

Myself and so many in the community work tirelessly to try and help people understand a life isn’t over with an Ostomy and comments on tonight’s show sets our work back 10 steps... arrogance isn’t helping anyone.

Ostomate and proud!
I took to twitter too to share my frustration and dissapointment, but I also wanted to write a proper post here that hopefully can show the inspiring side to ostomy life too.

 

Here are what other ostomates and advocates said about the episode too:

No You Cantcer @NoYouCantcer

Here are some ostomates who inspire me and others:
I know that for many an ostomy is an emergency and can come as a shock; I know that for many (like myself and others) they have many issues with their stomas and constant issues; I also know that It can take some a long time to adjust to ostomy life and it can be rather hard; some struggle a lot with adapting and this affects their mental, social, physical and financial health.

But then there are other ostomates who have regained their lives and done things they never would have imagined, because of their ostomy and because they had the surgery, that in their cases were life-changing as much as it were life-saving.

I will introduce you to Zoey Wright, Laura Zapulla aka @stoma_licious, Sam Abarca aka @Aussie_Ostomate, Gaylyn Henderson aka @Gutlessandglamorous, Blake Beckford and Dana Marie. You may have heard of these guys before or seen them on instagram, you may remember Laura and Sam from my 20 Aussie Ostomates on Instagram post.

While these are just 6 ostomates, there are so many others out there showing life with an ostomy can still be lived and loved, but also that this can be a second chance many didn't have.

I am sharing these 6 ostomates because they have inspired me and I know they will inspire you too!

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Introducing Zoey Wright @zoeywrightx - Pro Fitness Model:
Zoey is such an inspiration to many! She is a Pro Fitness Model with an ostomy, she has helped inspire so many others with IBD and an ostomy to do fitness and to also be a model too. She helped many, including myself, see that fitness is a reality with an ostomy. She shares videos, words of wisdom. She is stunning and beautiful and incredibly courageous to boot! Zoey has an ebook launching soon, so keep an eye out for more deets. Find her on: Instagram Facebook Twitter 

Introducing Laura Zapulla @stomalicious - Ostomy travel blogger:
In the 6 months post ostomy surgery Laura travelled 3 continents, 17 countries over a total of 10 months - all with her ostomy in tow! Laura helped me to realise that travelling with an ostomy is achievable and can happen. I know she has helped many others to see this too. Laura loves to get her bag out on her travels and below is pictured in front of the iconic Eiffel Tower! Laura had always had a dream of travelling and living abroad and her health put a halt to her plans, now she lives in London and travels every chance she gets. She shares her tips for travelling with an ostomy and living abroad on her blog and social media. Find her on: Instagram Facebook Blog

Introducing Sam Abarca @aussie_ostomate - RN with an ostomy and training to be a STN too:
Sam is an Registered Nurse (RN) from Australia who became an ostomate after living with IBD. She had surgery and 8 months later she was back in her scrubs and helping to save lives everyday! She documents life as a nurse with a stoma, including pesky bag leaks, but she continually inspires others whether it is running for a marathon or training to be a Stomal Therapy Nurse, or even helping new ostomates as they adapt to life post op. I know my STN is my rock and I couldn't have done this without her, and I know how valuable a good STN is to an ostomate, so Sam having her experience as an ostomate is really going to be such a resource and tool. Wishing you all the best as you finish your STN certification Sam x Find her on: Instagram

Introducing Gaylyn Henderson founder of @gutlessandglamorous - helping to inspire the beauty in all of us:

"Anything that has the power to save a life can be nothing but beautiful!"
- Gaylyn Henderson

For over a decade Gaylyn adapted her life around her pain, her health issues caused from her IBD and struggling to find normalcy. It affected her emotional health too. It was then when she had her total colectomy and became an ostomate that she regained her love of life again. She often has spoken out about the stigma attached to having an ostomy that was the reason she held off for so long. Determined to change this for others, she founded the Gutless and Glamorous foundation with aims at helping to inspire and improve the lives of people with chronic illness and pays special attention to those with an ostomy or need to undergo life altering surgeries. She said (in an interview with BlackDoctor) her ostomy "saved my life and I want to highlight that those living with one can be both #GutlessandGlamorous. It is my goal to help erase the stigma." I think she has done an incredible job and believe she deserves a huge applause for all her tireless work from advocacy, support, education and fundraising for a cure. The world is a better place because of people like Gaylyn. Find her on: Instagram Facebook Twitter Blog

Introducing Blake Beckford @Blake_Beckford - Model, Body Builder and advocate:
Blake battled bowel disease for over a decade which led to him needing surgery for an ostomy. Blake became determined to get back into shape and regain his bodybuilder career and it led to him becoming a model. He has inspired ostomates around the world to get into shape and enjoy fitness, he shares tips and videos on his blog and socials. He even founded a site called OstomyReviewer which is this amazing site where you can rate and review ostomy products and see what other ostomates have said about it before you have ordered or purchased it, how genious and is such a good platform too! Blake started the hashtag #myillnessisnotyourinsult after ostomy life was insulted by some leading "news" sites and he tirelessly advocates and fights for ostomates. Blake is often quoted saying "my bag gave me a second chance" and he tries to be a positive role model for ostomates, continuing to instil hope in others. Find him on: Instagram Facebook Twitter Blog

Introducing Dana Marie Arnold @lovedanamarie - country music singer/songwriter, recently married:
If you haven't followed Dana on insta yet, get onto it. She is so positive and beautiful, she is an amazingly talented country music singer/songwriter (I love her music) and her feed always has you feeling warm and fuzzy. Her love of life and gratitude for all things, including faith, is contaious and she is so down to earth. She got married recently to her husband Tanner and looked absolutley stunning on her wedding day. On her blog she shares some great advice on living with a stoma, how faith can help you heal and more importantly, she shares tips on how to love yourself bag and all. I actually first discovered Dana back in 2015 when I came across her online course she had for "rock the bag" where she helped you find confidence and to love yourself post ostomy surgery, I started following her online and her feed constantly leaves me feeling positive. I'm not religious but I find comfort in her words at times. Do yourself a favour and follow her, you won't be disappointed. Congrats Dana on your wedding Day too! Find her on: Instagram Facebook Blog

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I have talked before about how my ostomy gave me my life back and how it saved my life, my ostomy is the reason I get to cherish the gift of each day I wake up, my ostomy isn't perfect and is complicated but it gives me life and that is precious. In the future I hope that there is more acceptance for life-altering and life-saving surgeries like an ostomy and that it is more accepted.

This is why I started my blog 5 years ago, so that I can share life with an ostomy and hope to inspire others to live their best lives. I am so grateful now that there are so many wonderful ostomy advocates and bloggers on social media.

My wish is that in 10 years there won't be a stigma for ostomy life, that ostomy life will be accepted and not made to feel embarrassed for pooping different... I have seen how much the landscape has changed in 5 years and it gives me hope for future ostomates and the next generation of ostomates that they will feel love and acceptance and never have to feel ashamed for something out of their control anyway.

As I say all the time, I'd rather an ostomy in tow than a tag on my toe, ostomy life has been a rollercoaster ride for me, but it has also gifted me the joy of living too - so I will always be grateful for that.

 

Posted by: Talya AT 11:43 pm   |  Permalink   |  0 Comments  |  Email
Friday, February 09 2018

I have had the pleasure of connecting with some incredible ostomates over the years, even had the chance to interview and chat with them for my magazine, which is always a great privilege. Some have even become great friends too.


My Interview with Krystal on Ostomyconnection.com

Last year I was honoured when Krystal Miller, who is an Aussie ostomate/advocate/IBD warrior and blogger more famously and belovedly known as Bag Lady Mama online, allowed me to interview her for my magazine. She was the cover ostomate for issue 2 and allowed me to get down and deep with my readers, and had a no filter no question off limits type interview.

Ostomyconnection.com reached out after the issue went live and asked us if we wouldn't mind if the interview was republished and edited to suit the readership and the site.

So last month I opened up my inbox to see the latest interview went live on their site. I was so excited to see how many were sharing the article around social media and how many loved the interview.

As a writer, or maybe it is just me, I tend to doubt myself A LOT - I mean constantly - so I always worry that people won't like what I have written or that it wouldn't be read/enjoyed.

I saw within a couple of days there'd been something like 888 shares, this gave me this huge smile and sense of "maybe I am doing something right after all" but to know so many liked it really made me so proud. I think I used the term 'proud as punch' on twitter, but I honestly am.

Of course I know my interview wouldn't have been what it was if it weren't for my wonderful interviewee, Krystal.

If you want to read the interview on OstomyConnection the link is here.

If you want to read the original interview or to read issue 2 of the ostomistic life magazine the link is here.

You can also find Krystal aka Bag Lady Mama online via:
Instagram @bagladymama
Facebook @bagladymama
Twitter @bagladymama
Or her site/blog

5 years ago I took a chance on myself and started writing about life with an ostomy, and I am just so grateful to the opportunities and people I have met along the way.

P.S I have another interview/article on another Aussie ostomate, Laura Zapulla who blogs at stomalicious, talking about how she has inspired and shown ostomates that you can have bag will travel and that having an ostomy doesn't stop you from living the life you are able to. She recently moved abroad which is a lifelong dream. So I am excited to share that interview soon. Laura has shared articles for me in my magazine about travel with an ostomy too. 

Posted by: Talya AT 11:03 am   |  Permalink   |  0 Comments  |  Email
Wednesday, February 07 2018

CONTENT WARNING: DISCUSSES DEATH READ AT OWN RISK

What a massive couple of weeks it has been, if you were following along on social media you may have seen my posts from hospital updating on what was going on.

Australia Day, is often a day spent with family and friends remembering or celebrating what it is to be an Australian, I know the day has conflicted meanings and celebrations for everyone, but Jan 26th 2018 will be a day that I remember just how close I came to those pearly gates and how bloody grateful I am to live to see another day.


Taken Jan 26th, 2018 after "the event"

So this is what had unfolded:

On Tuesday Jan 23rd, I was brushing my teeth around 4pm when I had a really sudden sharp pain around my right kidney area and shot down my leg and my leg felt like it were about to snap. I hopped, literally, to bed and got comfortable and had a nap. I woke around 10pm and struggled to get up out of bed and then also get to the toilet.

The next day the pain in my right leg was a lot worse, I couldn't weight-bear and relied on Russ to help me move from bed to toilet back to bed. I was crying in agony.

Thursday morning I woke and trying to get to the toilet I was screaming in pain. Russ was heading to work and I called Palliative care who told me to call an ambulance. So Russ left for work and I went in the ambo to the hospital. I had fentanyl up the nose a couple of times and barely took the edge off, no amount of morphine was helping either. Russ went to work but by 10am he was at the hospital as he was upset and wanted to be with me. It was a comfort him being there as I was in agony and I was so scared. The pain was horrendous.

I was admitted to hospital.


In Emergency

The next bit is where things got dicey....

So overnight my heart rate went sky high, talking 144bpm (normal for me is 90-100). My o2 dropped too.

They monitored me but by next morning things weren't any better.

I remember friends messaging me around 10am and I replied back, I thought I made sense but it was all drivvle and nonsense but it looked fine to me, so I didn't think anything of it.

That was all I recall, I don't recall much after that point.

Apparantly, from the pieces I managed to compile in the days to follow, was that I was passing in and out of consciousness. I went into a deep sleep and they struggled to wake me.

I kept coming too during the "resus" which may have been around 3pm and saw bunch of folk standing around my bed, some were pushing IV drips in, someone pressed the big emergency button, remember my bed being wheeled to another room where doctors were talking to me. I was upset and frustrated as no one was telling me what was happening, turns out they were but I was passing out by the time I asked my question and them telling me what was happening.

I wasn't sure where I was and my speech was slurred.

They rushed me up to CT and did a full body scan, thinking I was having a stroke or heart attack. I am on clexane injections due to previous blood clots in my lungs, but also because the tumour in my abdomen has blocked off the major arterial blood supply to my small bowel and stomach and they were worried that maybe there were a clot in my small bowel (one of the forecasted ways I could die)...

So I was upset and asked them to call Russ, he arrived sometime after they called him (he was on his way to me anyway) and I calmed down a bit when I recognised one of the voices of one of my doctors off my palliative care team, it was just scary being unconscious and not being able to see who or what was being done to you and remembering I didn't quite know what was happening.

I did also keep telling them "I'm not ready to die today" and "ignore my DNR". I was adamant that NOW was not my time and I was crying saying "but I am not ready" and "I need to write my goodbye letters".

I was just so worried that I was dying alone and it was my fear.


24 hours later, still was on o2

So fast forward to post event, I was so hazy and tired. My body hurt from the siezures and all the medications, I was having trouble reading (still am) but also what I was speaking wasn't what my mind thought I was trying to say, even typing for a few days after were a struggle.

I am still so tired and exhausted, I am trying to rest, but it really has been such a difficult couple of weeks.

They don't know what happened, they think it were an infection, my leg is still giving me grief but I was just so terrified.

Had I stayed home and tried to "tough it out" at home like I usually do, things would be very different and I could have very well died in my sleep during the day alone.... which is one of my fears, is dying alone. Russ has a fear of coming home from work and finding me, he gets worried when he calls me as he leaves work (even before all this happened) that he never knows what is awaiting him at home... poor guy! This latest event hasn't helped his fears though.

But it made me realise a few things...

1. I am not ready, I still feel like I have so much left to do, including putting pen to paper and penning those difficult goodbye letters to my loved ones.

2. I have a newfound appreciation for every good moment of the day and just how grateful I am to be alive

and 3. That Russ has even more grey hairs now than he did a fortnight ago, but that I saw just how much me being sick has taken a toll on him.

But jokes aside, I honestly always thought that when it were my time to go that I would know that it was time and that I would feel this sense of calm and readiness, as if I felt accomplished and happy. Now, I worry that maybe there isn't ever really going to be a universal sign or feeling of totality and that maybe you won't know.

It has made me even more determined now to try and get my affairs in order and try and be the best version of me I could be.

So I am home now, pain meds have had a total overhaul, back to weekly palliative care visits and here's hoping there are a few more chapters left of my story.

They pumped me with so much fluid during the resus that my stomach swelled up really badly, so much that I thought it would just split open, so took duiretics to help shift the water and my stomach is resembling it's usual self but still sore. Even around my stoma was swollen from fluid.

It has been a difficult week adjusting to being back home, I am still feeling weak and tired, my brain still feels sluggish and I am just taking my time to rest and actually listening to my body for once. I am not going to push myself anymore and after starting off 2018 on a rough patch I hope theres a few good months ahead.

Thank you to all the love, messages, comments checking in on me, it is a comfort knowing so many care.

You're stuck with me for a little longer still, well I hope anyway!

 

Posted by: Talya AT 10:02 am   |  Permalink   |  3 Comments  |  Email
Sunday, February 04 2018

If you could see me right now, you'd see that I have THE biggest grin on my face. Imagine a Cheshire cat style grin....

Yes, it's that huge!

Why?

I recently got home after a short stint in hospital where on Australia Day I almost died, it has been a rather upsetting and hard fortnight but I am home now and recovering (and catching up on everything).

I am so grateful and acknowledge my own privilege in that I could come home this time, but also that I continue to live for another day.

I was so scared on that Friday as I wasn't ready to die, I had so much I still was yet to achieve and do and finalise. I was scared that I felt things weren't ready and my anxiety since has been sky high, understandably so, worried about when or how close the end actually is - which is looming everyday closer, it is terrifying.

I know I have so much I wanted to achieve and goals I had set both personally and for my blog, which brings us to today's post.

Back when I started my blog 5 years ago I said to myself:
"I want to work hard to help others with their stoma journey, I want to have a blog still valuable in 5 years time and I want to get half a million views and just hope that I have helped at least one person in my time".

So I remember a couple of weeks ago - before I suddenly got sick and went to hospital - I had looked at my site stats as I was updating my media kit for January. It was when I noticed that my blog views were sitting 15k shy of half a mill.

I said to Russ: 
"It would be awesome if for my 5 year blogaversary I hit 500k views and hit 2 big goals in one go!"

I am not writing this as an intended brag post or anything, and I know for some blogs 500k views is their monthly or yearly visit, but I am sharing this as I am feeling incredibly proud as punch right now.

5 years ago I was told I had early stage bowel cancer and was about to undergo surgery to remove my entire large bowel and live the rest of my life with a permanent ileostomy for the rest of my life.

I was scared 

I was alone

But I took a leap of faith and courageously started my blog.

I was worried that people would not be kind or respectful, or that people would be judgemental and rude. I also worried that maybe what I am trying to share wouldn't be read by anyone and wouldn't be providing value or meaning.

I was full of self doubt.

It is quite vulnerable when you put yourself out there and you don't know how this all would work out and how well your blog would be received. Especially given that it is a difficult and personal experience that I was putting myself out there during what is a private time of mine and my husband's life, but I knew that if I shared this openly and what I learned along the way that it could actually be helping someone somewhere. I know it helped me immensely to share this, gave me a sense of purpose.

Back then there weren't many ostomy bloggers, social media (instagram more so) wasn't as huge nor were those publicly sharing life with an ostomy, and ostomy life and living with a bag was such a taboo subject. It felt rather lonely and isolating, felt kind of like it was a dirty little secret and I wanted to try and change that and help the next generation of young ostomates to embrace their lives and stoma.

I had hoped that I could be part of the movement of helping to normalise life with an ostomy and raise awareness of that life as a young person with a stoma is still able and that life won't end.

So with hesitation  I hit publish on that first post and was surprised by what followed.

I was thanked for what I wrote, I found people who respected my writing and it has led to some amazing friendships and I found my tribe and community.

I felt valued, I found self worth and I found that there was a sense of magic in helping others to feel less alone as they navigated their ostomy life or dealing with new diagnosis and what comes next or even in finding themselves again.

I know it is scary and daunting sometimes, but I know how much better it is when you find someone who you can identify and relate to or read something that creates an 'ah ha' moment... I just hope that I have helped others.

My milestone, that I thought back 5 years ago was unrealistic and unattainable but I still held hope and believed in myself and backed myself. I learned a lot in that time not just about life but also about myself.

Thanking you

My blog wouldn't be what it is without you guys, my tribe and cheer squad

Of course me celebrating this moment would be worthless if it weren't for every single one of you who read my blog, support me and my writing and have helped me create a community.

Thank you so much for your support, respect and kindness over this time, but also for your friendship too. Thank you for embracing me and for letting me be myself and helping me at times on my quest to find/discover/remember myself and for reminding me when I had forgotten. 

I want to thank you and show you how much I appreciate you.

I have been looking at ways to celebrate my 5 year blogaversary, reaching half a million views to my blog and being close to 1000 facebook likes. So I am thinking of fun ways to say thank you, so please stay tuned.

What an Ostomistically amazing time it is to be alive!

I am grateful so much for you all and if I have helped you in any way please comment below.

Posted by: Talya AT 12:58 pm   |  Permalink   |  1 Comment  |  Email
Sunday, January 14 2018

Russ, as of 4pm this afternoon, is off work for 10 days.

Cue the party blowers!

I noticed he was burning out, it is hard working full time and being a primary carer too, it can understandably be a bit overwhelming and exhausting at times.

It can feel like you're burning the candle at both ends too.

In 8 years of being together I have gotten good at recognising what Russ needs even before he says so himself.

So I realised around Christmas he was tired, he was more snappy and irritable than usual and he was just grumpy. I told him that he should find out the earliest he can take holidays and take them, as I was worried about him. Our GP agreed it was good idea for him too.

So he finished this afternoon and heads back Australia day or just before.

I don't want to overwhelm Russ with a jam packed daily itinerary, he doesn't do well with plans as the fallout of when they don't happen can be hard, so I am choosing to do things to spend time together but shouldn't be too overwhelming either. We don't have a holiday planned or anything but there are 5 things we want to try and do:

#1. Go for a couple of nice walks together:
My GP has told me I need to go outside even if it is just sitting outside for 10 minutes or going for a stroll around the street. But I really would like to go for a stroll around the beach or through the botanical gardens, providing it isn't too hot.

#2. Go to Bunnings:
We love Bunnings, is there anyone who doesn't? But we love just strolling through meandering up and down each asile and I could spend all day nestled in their plant section. Russ isn't very handy and seeing him try and use a drill set is hilarious, but we do love Bunnings. We are needing to price some house things, we have found since being first home-owners that the list of house to do stuff is never ending. I have appointments in Coffs at the Hospital and cancer centre on Tuesday arvo, given bunnings is close by we will do hospital stuff then treat ourselves to Bunnings, we can't wait!

#3. Do some house stuff:
I know this isn't news, but we still are yet to unpack some 15 months or so later. Which means our car still isn't in the garage and I am a little annoyed as he assured me by now it would and with all of these crazy storms of late I am surprised our car managed to avoid the hail, but it worries me and would be easier if it was put away... so I am hoping we can organise the shed, I will list some stuff online (fingers crossed we can make our mortgage this month since it is an extra $500 we need to find). I have some TV's I want hung on the walls, our wardrobe needs help and theres odds and ends that need sorting out. I have been asking for the back patio to be tidied up for half a year and if there is one day spent going gun-ho at sorting the house, it means more days resting. 

After all, happy wife happy life they say.

I have also just started doing the Barefoot Investor, so hoping to work on whipping ourselves into financial shape this year, so probably try and sell a bunch of stuff to find the $2k needed for one of the steps. I have A LOT of work to do to find this amount so I can begin.

#4. Do our belated Xmas:
I was so unwell on Xmas day that I didn't get to see a lot of family, I haven't been too well since either and haven't managed to get down. We are hoping over the next 12 days to find a day that suits everyone.

#5. Go Swimming:
One day over the next almost 2 weeks, I want to really go swimming finally. Just a matter of finding somewhere accessible and where there aren't many people around, given my first time swimming in years I don't want to be anxious that people are watching me, especially as it is the first time swimming since my new "leaks a lot" stoma too. So I don't want to be feeling added pressure. I have a gorgeous swimsuit from Yours Clothing (gifted) and a long sleeve SPF50+ rash shirt from SunSoaked (also gifted).

So it is safe to say I am feeling pretty excited for the next couple of weeks, I like days Russ has off and we can hang out - even if it is just playing board games in bed. Days I am in bed it is a comfort to know he is close by. Also means if there is an hour or two I can manage getting out of the house we can do stuff, those are my best parts of the week.

Here is to quality Talya and Russ time - Can you tell I am excited? 

Posted by: Talya AT 06:25 pm   |  Permalink   |  0 Comments  |  Email
Friday, January 12 2018

I know I have chirped on and on (and on) about how we are struggling financially and that I am concerned about when I die and if Russ can manage it on his own. I know you're probably sick of hearing me go on about it, but it honestly is so stressful.

It is hard being on one income, I know it is overwhelming for Russ too.

So last week we got a letter from our bank informing me that as of today (the 12th) our mortgage will be going up $500 a month.

This really scares me.

Not only do I not know where I am going to pluck that extra $500 from this month considering we are already halfway through the month, but that I really am so stressed and upset.

Yes, I acknowledge my priviledge in that we have our own mortgage, but even when we were renting things were hard and the rent assistance really made the world of difference when it came to our budget. But it doesn't mean that things instantly became easier when we got out mortgage. I didn't realise how much harder it was to have your own place.

I see how worried Russ is over this and I know he is on the fritz of losing it as it was before this letter, now he is just even more stressed. I feel so guilty, I know it isn't my fault and that I couldn't help getting sick but it is my age old issue with that I should have gotten life insurance earlier or made more of an effort to do extra super contributions when I worked as it would mean I have more than $3000 in super.... which I am still fighting to get out mind you.

Argh.

That is a fight for another day.

My Solution:

Yesterday I got a copy of Barefoot investor in the mail (thanks to a beautiful friend buying and sending me this copy) and started reading it, I have heard everyone rave about it and how effective it truly is, so it gives me hope for the first time that maybe I can get things under control this year.


So many have raved about the books!

It is one of my goals to get things neater for Russ, I don't know how much time I have and I think it will just be a massive peace of mind to know it is under control.

We have our mortgage, debts, car loan plus our other bills. So I try each year to review things to see if there is savings to be found, so I am hopeful that this book will help me even more.

Plus, it is one of my goals to read more too, so this is already tackling my goals for the year.... maybe this year is getting off to a stressful start but it might be turning around? Always hopeful that things will get better, surely they have to?

A friend has put me in touch with a broker and hoping we can find a new bank with a better rate and can consolidate our debt which will mean freeing up a lot of weekly expenditure and might mean we can afford to start saving.

So tell me, have you read the book? Did it help you? What was the biggest take away you had from it?

I will let you know when I have finished reading it and what progress I make.... until then, wish me luck!

We also got Solar Panels on recently, they had a 5 year interest free offer, so we are really hoping that on our next bill we can see a difference, otherwise I am going to be rather upset. Russ assures me we will be better off and that it will improve the value of our home too. Do you have solar panels and do you see a difference? Next bill is March, so will let you know if there were savings to be had.

As always, thank you for listening and wish me luck as I tackle this mammoth task!

What goals are you hoping to tackle this year?

 

Posted by: Talya AT 07:35 am   |  Permalink   |  0 Comments  |  Email
Friday, January 12 2018

I was scrolling through my Facebook 'on this day' memories when a post from this day, 5 years ago, came up.

The post was:

You see, I had a pretty MASSIVE and life changing decision that needed to be made.

I was told not long before Xmas 2012, that I had early signs of bowel cancer and that I needed to have a surgery called a total colectomy with a permanent (end) ileostomy created.

I was so scared, I was so alone and I didn't know of ANY other people with an ileostomy let alone a young person with one.

I was 21, why should I have known anyone, afterall I was ignorant and thought just older people lived with stoma bags, it was hard to fathom a young person living with one.

I ignorantly made this association as I presumed that people had a stoma at the end of their life and that their lives are essentially over.

So when I was told that I would be needing one at 21, for the rest of my life, I was really freaking out.

I tried to search for blogs about young people with an ostomy and couldn't find anyone. Social media wasn't what it is today, there was Instagram but it hadn't taken off, but there was still so much stigma around living with an ostomy and the social stigma too for that matter, that not many were sharing their lives publicly.

The media wasn't helping much when it came to sharing stories about people with a stoma either. They published such negative, fear mongering articles that had people, like me, perceiving it as death sentance or that it was THE worst thing imaginable.

But my surgeon said this to me :
"while this will change your life, it will also save it."

I met with my stoma nurse, counsellors and surgeon a couple of times to help me process the surgery. I hadn't told any of my friends or family, I didn't know how to bring it up, I knew they would have questions that I wasn't ready to answer, but I was worried about being judged.... so I decided to wait until I had to tell them, which was the week before surgery. I had so much to process as it was I just didn't need anyone else weighing in, they were pissed understandably, but they were also upset that I was trying to process such a huge thing on my own.

I had told Russ though and he had been coming to my appointments with me, as it was impacting him too. At the time I gave him the option to leave me, told him that I wouldn't hold it against him if he did as it wasn't what he signed up for, he told me to stop being ridiculous and it would take a lot more than that to stop loving me.

I couldn't have gotten through all of this and life to come, without Russ though.

He came to my appointments and asked my surgeons or stoma nurse questions, he even asked if when they teach me how to look after my stoma that they show him too so that he knew how to help. I think it was at that point I fell even more in love with him, which I didn't think was possible.

Russ said to me that it was my decision to have the surgery or not, but if it meant that this could be helping me to live as long as I could that he would appreciate me having the surgery.

So 5 years on, this is a letter I wished I could tell my scared 21-year-old self, I don't even recognise that part of me anymore I feel like this was a massive turning point in my life and I grew up A LOT in the years to follow.


21-year-old me

Letter To My 21-Year-Old Self:

Talya,

I know you have a lot that you’re dealing with right now and I know that you’re doing the best that you can under the circumstances. You are facing a life-defining decision right now, I can tell you this because I have watched you live through this.

Yes it changed your life but it saved it too.

Do you know how much pain you’re in right now and every time you go to the toilet? You probably won’t believe me when I say this, but you won’t be in agony multiple times a day. You won't even be needing to spend most of your day on the toilet either.

Do you know how you don’t leave the house, go out for dinner or stay over at someone’s house unless you know that a toilet is accessible and close by? Well, you won’t have to worry as much. You won’t be needing to quickly dash to the toilet every time you eat.

Do you know how you lost your enjoyment of food because of the above comments? You will find you can eat all your favourite and missed foods, given there are things you can’t eat anymore, but you will find you will learn to love and appreciate food again.

I won’t lie, there will be some pretty difficult times ahead, not only will surgery and the recovery be long and hard but it will be painful.

You will adapt to stoma life, but it will take time, so be patient with the process.

There will be times where shit literally will happen, it is to be expected, but trust me - you will get used to it. You will sometimes wake covered in shit, so just remember to empty your bag throughout the night and also invest in waterproof mattress protectors.

Sometimes leaks happen, it isn’t your fault, but always carry a spare set of supplies everywhere you go just in case. There will be a time where you’ll be caught out, it will be embarrassing and it will serve as a learning curve.

I know you’re apprehensive right now about surgery, but your stoma will serve to give you extra time… everyday is a gift and not a given right, learn to appreciate each day you wake up and all of the moments you have.

You don’t need to worry about Russ or your marriage, he will be there for you every step of the way. He will surprise you at how calm and collected he is even when you’re flustered and freaking out and covered in shit, even if it is in the middle of the night. He won’t mind helping with your bag changes or leaks, you just have to ask him.

He loves you for you and your stoma will soon be a part of you.

You will lose friends, because they don’t understand - it will hurt but don’t dwell too much on those who aren’t there for you and appreciate and be grateful to those who are. You will make some great friendships over the coming years too, you'll find people who embrace you for the wonderful person you are and won't be worried that you have a stoma.

Just remember what dad used to say to you and find comfort in his words offered.

The next 5 years will be incredibly tough and this is just the start of the rollercoaster ride known as life, this will be the first of many primary cancer diagnosis’ and the start of many surgeries.

Know your limits but also recognise when you need to ask for help too. Put your stoicism aside and ask people to help you, most are wanting to help they just are waiting for you to ask.

There’ll be times where you easily wished you could pick up the phone and call dad, but there’ll be times where you will draw from his presence and he will be there to guide you. I am sure he will be proud of you. 

Learn to pick your battles, know that some just aren’t worth the stress. You will come to learn to try and let everything go, everyone will always be having their own opinion or force their mindset onto you. Just stay true to yourself. Know your worth. Know that you aren’t what they think of you. 

It will be hard on your mental health throughout times over these next 5 years, there will be times where you spiral and it is important to always recognise when you need help. Find what drives your creativity, focus on writing or creating, find ways to give yourself purpose in your day.

You are about to start a blog, you are worried about putting all this out there publicly and worried about how other’s perceive you. But by doing this you are going to be helping so many, you will help save lives, you will help nurses in how they help support young people with a stoma, you’ll be nominated for awards, you will even start your own magazine for young people with a stoma and will even help others to feel less alone.

You’ll start your blog because you’re finding as a 21-year-old female that there isn’t much info out there at the moment when it comes to young people with a stoma and a blog, you don’t know what life will be like going forward, but you will feel that if you share it as you go that maybe you’ll help others who are feeling alone or worried too. You will meet other young ostomates too.

You’ll even be invited to speak about your time as a young ostomate.

But you will also get to do some fun stuff too, like catch the train to Adelaide, go to P!nk’s 2013 concert, Meet the Dixie Chicks and see them in concert in 2017, finally get to experience and see Darling Harbour, Go to Melbourne and accidentally stumble across the Offspring hospital, go swimming and do water aerobics, and do some bucket listing too. You'll finally get a tattoo too!

You and Russ will realise your house dreams in 2015 and will build a house, you’ll also have a very adorable and fun kitten who will make your days fun and full of love.

Then in 2016 you’ll need surgery to remove one of your tumours which will mean losing your stoma, your stoma will now be retracted and sit under your skin. It will leak a lot, it will be hard at times to lose all hope knowing the good stoma you had prior, but you will get through it. You will get used to daily leaks and waking up with a leak, it will affect your mood and what you do but you’ll be relatively okay.

In 2016 you will also enter palliative care, they will offer you a wheelchair - don’t decline out of pride or feeling like you aren’t worthy of it. You will learn to love your wheelchair and embrace it, just like you have your stoma.

So while you have a huge decision to make right now, I can tell you this now that you will be better off having the surgery. You will be okay, your marriage will be fine, you will love life and not fear it.

Don’t fear asking your stoma nurse for help, even if you feel it is a silly question, she will be one of your greatest supports. She has probably heard it all, you really couldn't do this without her....

But you have got this, your life will be changed but you will cope and adapt.... just breathe!

Write that bucket list now, start to see and do as much as you can and don’t keep saying there’ll be plenty of time, go travel when you’re able to and take lots of photos and always tell those you hold dear you love them and appreciate them.

Love,
your older and somewhat wiser self

P.S I just wanted to say thank you to each and every person who reads my posts, comments on social media or on here or has emailed me over these 5 years supporting my blog. Cannot believe it is 5 years later already!

 

 

Posted by: Talya AT 06:47 am   |  Permalink   |  0 Comments  |  Email
Monday, January 08 2018

I know there has been a lot of posts around social media this past week (well, more so New Years Day) about the whole 'non resolutions' or how people were dropping the making resolutions as they either never stick or it makes people feel overwhelmed and anxious. This has something to do with the pressure placed on how it is a "new year new me" and that you internalise this pressure for the need to change yourself.... so it gets pretty depressing when it is the end of the year and you are yet to do one thing you set out to do.

amiright?


This was a snapshot of my best memories of 2017 - read my year in review post here

Well, I know for me I get horribly depressed each December when I realise that none of my unrealistic/unattainable goals weren't met, and I feel like a bit of a failure and get pretty hard on myself.

So this year I plan on doing something a little different... I give up on each year setting myself the task of finding that million dollar idea (maybe if I don't try so hard I will find it), or to feel bad that I didn't finish my uni degree, or that I haven't got a hot bod (#sorrynotsorry).

I am choosing 18 ACHIEVABLE things I want to accomplish in 2018.

#1. Self Care:
This is something I have been gradually introducing into my life since being sick, which feels like forever, but gradually over these 5 years I have been trying to focus more on putting my own needs first and focus on me more. So in preparation of this I have been reading "The Self-Care Project" written by Jayne Hardy who is the founder and CEO of The Blurt Foundation. I love the self care subscription boxes they offer through The Blurt Foundation and was how I first learned about their company when I was researching "pick me up gifts" for issue 1 of The Ostomistic Life.

I purchased the ebook version off Amazon and by a quarter of the way into the book I was astonished, I could have sworn it was me who had written this book as it was just so incredibly relatable. It definitely has me hooked! 

Self care isn't necassarily just candle lit bubble baths with a glass of bubbly and reading a book, it can be a whole range of things. It could be doing things that make you happy, here is a post I wrote back in 2016 about 5 things to do each to add happiness or meaning to my day. You could choose to meditate or do yoga, could do a course or learn a new skill, could do something on your bucket list, could volunteer, do a random act of kindness, buy yourself flowers, get pampered, get your hair done or watch a movie or show. 

#2. To read more:
I used to be a bit of a book worm back in the day, I often would be found skipping classes just to read books in the quad. I used to be able to read so quick and loved binge-reading a series. I felt so proud when my sister loved reading as much as I used to and had quite the impressive collection.

So I have been so focussed on micro managing every part of my day/life that I would say I was too busy to read or I didn't have the time, but I vow this year to make time to read more. Whether it be the ebooks I have stored on my ipad or tablet, or going old fashioned and reading the amassed pile of books I have acculumated over the past few years. So starting with reading "The Self-care project" I am setting myself the challenge of either reading 1 book a month or 18 books this year.

Let's do this!


Just some of the books sitting on my bedside on my "to read list" (pic from Jan last year)

#3. To say No more:
I am a people pleaser, I am notorious for putting the needs of others before myself and sacrificing myself in the process. I am struggling to recognise myself and part of the reason behind doing this self care and focussing on myself is to help me try and find or recognise myself again... so part of my self care is saying no to things that will cause me stress or anxiety or bring me misery and saying yes more to things that will bring me joy. Will see how I go, because it will be one of my biggest challenges yet.

In saying this though, there will be times where I say no simply because I am physically unable to do something due to pain or health, so I am sure this will cause more stress as some might think my health is an excuse? As I said, a challenge... but I am not putting my health at risk for a ridiculous deadline anymore.

#4. Reducing waste:
I watched the ABC series "War on Waste" (also on ABC iView) and it left me feeling sad and concerned for the world in 50 years. I have seen those dystopian movies and TV shows such as 100, Travellers, The Handmaid's Tale and the like, where the world decades or hundreds of years from now is in absolute ruin due to us humans, so watching this TV series about the impact we have on the environment definitely stops you in your tracks and makes you realise the need for change.

One of my favourite quotes from Gandhi is "Be the change you wish to see in the world". Change is hard and takes patience and a lot of baby steps, but you can't expect the world to be better or changed if you don't play a part yourself. 

So I have ordered some produce reusable bags from my Sister-In Law's business which will mean no longer using single use plastic bags for produce. We also plan on using environment friendly bags in replace of plastic bags and I hope to get a compost happening too.... as I said it will be hard, but I do hope it will help the environment.

I feel guilty sometimes being an ostomate, because my base plate and bags aren't biodegradable (that I'm aware of) so even if I used bio degradable garbage bags and buried it, it still wouldn't break down and would be just the same as putting it in the bin. So I hate having a bag that leaks multiple times a day as it means a lot of ostomy products are used and thrown away, and I feel guilty that I am impacting the environment.... but it can't be helped.

So if I can make changes in other areas of my life, it hopefully makes up for it somehow?

#5. See the snow:
I went to the snow years ago and loved skiing even though I was incredibly unco and fell over far too many times because I couldn't work out how to stop quickly enough... honestly, the stories are hilarious. It was the end of September and there was hardly any snow. But something I have always dreamed of was to see the snow, like think snow failing white Christmas.

I had always hoped to get to the US or Canada and see this in person myself, but while that dream won't happen, I am happy to settle for somewhere in Australia where it snows, there is a romantic log cabin with a fire and somewhere Russ and I can unwind and relax.

I have heard him say almost daily the past month that he truly wants to experience this with me. Watching all the romantic Christmas movies helped I think, but it has had him rather upset realising too all the things he wants to experience with me but not sure if we will.

It is hard sometimes trying to squeeze 80 years of experiences into as much time as we have left.

If you have suggestions, do let me know, I can't fly so anywhere that is easily train accessible or short driving trips in NSW will be best.

#6. Learn something new:
I am still undecided on what that NEW thing is yet to be, whether it is learn a craft or skill, or more complex like learn something I have thought about for a while like learning to feel confident again, learn how to be fashionable, learn how to edit videos, learn how to podcast or learn an instrument or learn to surf. HA okay, so the latter won't happen, but you get the drift.

I am doing a course right now cert 4 in screen and media and learning at the moment how to write children's stories.

#7. Write that damn book:
I have said for as long as I can remember that I wanted to write a book, I often thought about writing a children's book which who knows could happen if I can manage to do well in my course. I'll see where my writing takes me.

#8. Write a blog post a week:
This suggestion actually came from my wonderful GP last year, he told me to write more often and if not daily to write weekly. I guess this will be post #1 for the year? If you have a question or topic you want covered do reach out and let me know.

#9. Write a journal:
It has been a while since I have written a daily journal, but my GP thinks writing daily could be good. But I never really do ANYTHING lately that is worth jotting down. But it is 8 days in to this year I have already failed at this, I was given a diary for Xmas but Russ doesn't know where it is. I know I haven't done anything too exciting yet, but my GP thinks it could be beneficial.

All of these writing cues would be kind of life self care I guess, since it is cathartic and all.

#10. Regularly meet with a counsellor:
I have spoken openly on social media and on here about my mental health issues but in case you forgot I have depression, high functioning anxiety, borderline personality disorder, self diagnosed Excoriation Disorder and I think that mostly covers it. Anyway, I have been naughty and haven't seen anyone in a while and I know I need to. I have bottled so much up that I don't know how to contain it anymore and I have complex issues I am trying to work through and it is a little overwhelming at times. I don't feel like a repeat of my breakdown in June, it took months to recover.... I just need to make time and prioritise my mental health. Russ' roster has been changing and been hard to plan ahead of time for appointments, so I am really hoping this year to try harder to prioritise this.

I guess this would come under self care and taking time for my needs too.


My swimmers kindly gifted from Yours Clothing - LOVE them

#11. Go Swimming:
I haven't been to the beach in years, I know it sounds strange since I live minutes from some of the most beautiful beaches in Australia, but it is hard when the beaches require long walks and not very accessible. It is something I miss and haven't been swimming in years, so I am hoping now that there is an accessible ramp installed at Back Creek South West Rocks that swimming could happen. I got gifted this beautiful pair of swimmers back in July that I am yet to wear swimming, so between trying to find a day where my pain is managable, where my stoma is behaving, that it lines up on a day Russ has off or that the weather was good has been tricky. Since it is school holidays everywhere is probably packed anyway, so I might wait until it is over. I don't want to spoil my first swim in years by my anxiety and fear over if I am being judged or laughed at. I am determined to make it happen - stay tuned!

Don't worry I plan on being sun safe and have my SPF50+ rashie from SunSoaked and my Sunbella parasol to help me too.

#12. Go Glamping:
I have wanted to go glamping for years, Russ loves camping but with my health issues I prefer the glamping idea. For 5 years I have had this on my bucket list, every year I say "this is the year" but something always comes up or we can't afford it. There is this place not far from here that do beach tents, it is at Red Rock (one of my fave spots) so I'd like to manage a couple of days away in March for our birthdays - since I was in hospital for Russ' I really wanted to make up for it this year. So maybe this could be when I manage my much awaited swim.

#13. Have a holiday:
This could be the past 2 cues, but it has been a while since we have had a proper holiday where the one thing on our to do list is to relax. Our last proper holiday was March 2015, was just after being in hospital for months and learning of a couple of new cancer diagnosis and I booked this place in Kingcliff for a week. I have always wanted to go back, they had the most wonderful pool and it was so relaxing. I really would like to do something this year, Russ needs a holiday.

#14. Explore the Coast:
For years we have said we wanted to see more of the coast. If only Russ could legally tow a caravan a friend offered up their brand new luxe caravan and land rover anytime we wanted it. Russ is only on his green provisionals so will be another 18 months before he can drive it, but it definitely would help make our bucket listing adventures more affordable. But until then, we hope to do day trips exploring different parts of the coast such as seeing the Jacaranda festival in Grafton, visiting Yamba and Maclean, Visiting Wooli, Laurieten and Bonny Hills, go on the ferry at Port Macquarie, Visit Foster and Tuncurry, go on a picnic to Yarrahappini and so forth.

We still have bucket listing adventures for Brisbane, Sydney, Newcastle and beyond. I am just wanting to see so much!

I am just really hoping to see/experience new places this year.


Red Rock, NSW - where we had our wedding anniversary - a favourite place of mine

#15. Renew our vows:
I really wanted to do this for our 7th wedding anniversary last year, but spent the next few months in bed with pain and didn't manage to find time to do what I had hoped... I had this epic idea I wanted to do, so I do hope to do it in pieces throughout this year and reveal my big plan.

I had always said when we get to 10 years we would renew somewhere fun and overseas, but not sure that dream of international travel is managable or if I could make it to our 10 wedding anniversary.

#16. Get back on our feet financially:
It has been really hard to feel like we aren't drowning at times in our finances. Our bank is the worst, you may recall how they no longer are letting me do my own banking because I have cancer and they believe I no longer am of sound mind - all because I asked for the 1.5% less advertised rate... so because I knew it would save us money doing so they then questioned my judgement... so I am not allowed to do my own banking unless a lawyer is present. I can't afford a lawyer so I am backed into a corner and feel trapped. It has been many months of stress and worry.

We tried to apply to several other banks who all declined us because we didn't have savings (everything went into our house) and so we had hoped to even consolidate everything into one loan to make repayments easier and more affordable but were declined. Despite having equity in the property. It is hard to have savings when every cent is going into the house, our debt, living expenses, medical expenses and the list goes on.

I am just hoping this year we have better luck and if we can't at least consolidate everything that we can find a new bank for our home loan. I just want out of their grip, just like Britain wanted out of the EU. If we can get a new bank and debt consolidation everything will be more easier, we might even afford a mini holiday.

Part of this is finding a new bank too. I just want and need everything to be tidied up and managable ready for Russ to take over when I die.

#17. See a waterfall:
I have long dreamed of seeing a waterfall. We hope to get out to Dorrigo. I know there is a beautiful one in Woolgoolga but the wheelchair isn't designed for offroad 4x4.

#18. Try to get my pain under control:

I spent the better part of last year struggling with my pain. I know my doctors are doing their best to manage it, but it really is hard and affects so many aspects of my life. It is debilitating, exhausting, it makes me frustrated and irritable, it messes with my mental health and it just sucks. It is hard to manage getting out of bed most days let alone manage an hour of getting out and about. I missed out on a lot last year and I don't want to miss out on life this year because of pain.

☟ ☟ ☟ ☟ ☟ ☟ ☟ ☟

I know it was a long post, but I thought 18 made sense since you know it is 2018 and all. I feel good that it is all written down but now overwhelmed, which is ironic, but I will do seperate posts throughout the year both here and on social media documenting how I go... it means I can hold myself accountable now since I have told you all about this.

My list honestly could have continued such as "yet to finish unpacking", "yet to manage that room makeover" and so on. I just decided to choose things that will either improve my life, bring me joy or are somewhat achievable for this year.... and if I win the lotto that is a bonus!

Russ asked me what I have been writing/working on the past couple of days, he then rattled off a list of 18 things he *felt* I should do instead which all involved him and were very much Russ focussed or specific. I laughed and said, your list kind of defeats the purpose of several things on my list like taking time for me and saying no and putting me first.

To be fair, his list was most of what I do anyway which was:
1. give Russ head scratches
2. Give him foot rubs and massages
3. Run a bubble bath for Russ
4. To go fishing
5. To go camping
6. To get roof racks and go canoeing
and so on..... but I was kind of proud that he is taking initiative when it comes to his own self care and recognising what he needs to do for his own mental health too.


One of the best moments of last year, my first tattoo drawn by Jubly-Umph

Here's hoping 2018 is a good year and that I can do some of these things if not all. Despite spending over 80% of the year in bed last year, the times I did bucket list stuff or was out and about are some of my most cherished memories looking back, those memories I remember on my bad days.

I wish you a HNY2018 and wishing you health, love, success, happiness and clarity this year.

Thank you for reading, feel free to share something you hope to do this year in the comments below:

Posted by: Talya AT 11:23 am   |  Permalink   |  0 Comments  |  Email
Sunday, December 10 2017

You don't need me to remind you that Christmas is around the corner and fast approaching, I am sure everytime you step into the supermarket you're reminded with visual cues.

But just in case you live under a rock.... there are exactly 2 Sundays left until Christmas.

so #keepcalm, don't panic - you've got this!

I have always had this dream of hosting Christmas one year, not realising the full extent of what that might involve, I naively and dutifully spent time preparing and getting the house and ourselves ready last year - as it was indeed my turn.

As my family live 2 hours away, this meant they needed to travel up the night before (for those who stayed the night) or the next day (for those who didn't stay). I am the oldest of 10 kids, then there are our partners and now nephews, so there were a lot of people coming for the couple of days.

So here were the things I did to help myself prepare and get ready for having guests over the holidays or throughout the year, based off of various guest's experiences or feedback over the past year....

My 10 top tips to getting ready for guests at Xmas time: 

#1. Ensure there is plenty of toilet paper:
It is just usually my husband and myself, so we buy our toilet paper from Who Gives A Crap which is good stuff for your bottom and the environment, plus every roll of paper goes towards giving someone access to a toilet for a week. Living with bowel relatable illnesses for years, I know how important proper sanitary access is.

So a normal shipment lasts us 3-6months, but as we were having around 15 extra people in the house we decided to order our shipment early and have toilet paper supply at the ready.... last thing we wanted was on Xmas day to run out and the shops are closed. I felt a little less stressed knowing that we had ample supply.

#2. Knowing the meals or menu ahead of time:
A month before Xmas I had finalised the meal plan and menu for Xmas day, I had spent the month beforehand getting input from family attending on the day and curated a menu that I then knew was to everyone's liking. I asked people to bring their own alcohol or seafood, as everyone has their own preferences and that shit is expensive, so this helped me to stick to my budget too.

By having the meal organised ahead of time it meant I could shop where items were on sale and could get things such as soft drinks when on sale and kept aside. I just had to get the fresh stuff like bread rolls, meats and salads Xmas eve.

By also knowing what I needed to grab Xmas eve it made a quick dash to the shops a breeze, we even had to get the wheelchair out, but we had a list, we checked it twice, and we were in and out of there in a jiffy. 

Yes, I designed and sent out a flyer for Xmas day - I informed the menu plans, what they needed to bring, accommodation options and also offered to wrap presents... I think the last part people may have thought I was joking about. But Talya doesn't joke when it comes to wrapping presents - I love it!!

#3. Prepare things before Xmas day:
I am unable to stand for long periods of time, so cooking is something I delegate to Russ nowadays as it gets too painful and tiresome. If I can prepare things seated, I will. But knowing my lack of energy and ability to cook I knew I couldn't be the host slaving away in the kitchen all day and as a result missing precious family time.

So I had most things done the night before in the fridge, then I spent some time in the morning quickly doing the salads and cooking some foods. I was lucky and grateful that my family did most of the cooking for me, it made the day less stressful.

#4. Ensure your guests have easy access to items:
I know when I have been a guest at someone's home, I always felt awkward when asking where things were such as toilet paper, towels, soap etc. So keeping this in mind, I tried to make my guest's stay easier.

I know if I am resting people don't like to bother me, but I know this is out of a place of courtesy and caring but also they don't wish to be a bother. So I tried to organise my guest bedroom and bathroom with this in mind too, trying to keep people feeling welcome and at ease is important to me... as I do hope people come and stay again.

So in the room I have a basket of various toiletries and items I have collected throughout the years. Whether it is hotel soap or shower caps, or a pack of disposable razors, or pads/tampons, or even sunscreen and aeroguard. Most items were on sale or as part of a 3 pack and were naturally spares. I also have toothbrushes too, in case a guest forgets theirs. I also have spare heatpacks too.

I hope that by having all the items one may need readily and available to them, that it might help offer dignity to their stay.


The basket looks more full now, but this was the first items put in there. I just add things when on sale etc.

#5. Have plenty of towels available:
When you have over 10 people staying in your house, you need a lot of towels!

I spent the weeks leading up to Christmas re-washing our spare towels (they had been in storage since the move) and made sure that these were fresh and in ample supply. I gave at least 2 on the bed for each guest (in case one was needed for hair), along with a face washer, soap bar, and had all of this ready for when they arrived.

In the linen cupboard were 50 more towels ready, we just wanted them to be prepared.

#6. Have empty and clean bins near all toilets:
I found this tip on a blog by Rebecca Senyard who blogs at "The Plumbette" which said to save your plumbing this Xmas, to have an empty bin near your toilets for guests to dispose of sanitary items. I was shocked to think people flush them, and as a home owner, I would hate to foot the bill to repair the plumbing (especially over Xmas) because something blocked it. Gross!! So to avoid this fiasco this Xmas pop a bin nearby, if you already have a bin there just be sure to make sure it is empty before guests arrive! This again helps your guests to have dignity when they visit too!

#7. Have a toilet plunger, toilet brush and spray ready too
As important as step #6 is, this one also applies. Guests may require the use of a plunger, toilet brush or spray, so make sure you have your bathroom stocked and ready for guests this Xmas. Saves them the embarassment of needing to ask.

#8. It's okay to need 'me time' and step away for a breather
I am a person with high functioning anxiety, I tend to get overwhelmed very easily and even around my family or in social settings sometimes I don't say much or I just say drivvle because my brain just freezes and I just don't know how to act or what to say. I tend to be over analysing every word said, every social cue, what someone is thinking of me, and this is rather tiresome.

It can be hard when you're hosting Xmas or any event as it is your house and everyone is there or everywhere, you tend to feel a bit overwhelmed. It is important to have somewhere in your house that is YOUR (underline YOUR) space and somewhere that is off limits to everyone. You might not necesarrily make this a known no-go-zone or add signage to the door, but as long as you know you have somewhere you can escape to it will help you.

I love my family, I love spending time with them, but there can be times where I need to just disappear for 5 or more minutes for my ability to keep calm and carry on, so when it is at your house it can be harder. So have a space where you can just be alone to regather your thoughts or to practice mindfulness techniques or to just take a breather... it is important to know your own limits too. This can be a form of self care too.

#9. Have a fan or cooling option available, especially if it is summer
Here it can be pretty hot and muggy (humid) around Christmas or Summer, so while we have ducted air conditioning, we also have a pedastal fan in the guest rooms to have options to what makes them more comfortable. It is hard sometimes in Summer to get a good night's sleep, so if you have a big day planned your guests might need plenty of rest.

A fan is good too, as sometimes people have trouble sleeping away from their own beds and a fan offers white noise which may help them to feel calm or relaxed, even if the fan is kept in the cupboard in their room for example, it gives them the option of not having to ask or be embarrassed because they need a fan.

#10. Have fresh linens on the bed ready when guests arrive
When you know you have guests arriving, especially if they are having to travel, having their beds already made with freshly washed linens will help them to retire early if they are tired without the delay of waitiing for sheets to dry or the bed to be made; and by having the bed ready to go when they arrive, your guests can rest whenever they need to without the embarassment of needing to ask. I know when I travel I am in pain and I often just want to have a nap, so it helps to have this all ready for them when they arrive.


Dusty loves when people visit - as do I!

bonus tip #11. Have plenty for your guests to do
I know not everyone likes to be social 110% of the time, so we have tried to have things that people can do if they wanted to. Whether it be a TV in their room to watch their own TV shows (my MIL always watches Star Trek or Castle box sets when she visits) and having a spare TV means we aren't bothering each other with our own shows. We also have a board games cupboard with a massive range of games, not to forget our book shelf with heaps of books, or our large DVD collection. We also got some toys for when young children visit and to keep them occupied.... we have bikes and spare helmets, a dart board too, we have so many different things that we hoped guests won't find our place boring... we aim for fun yet inviting, so it is a work in progress!

So while I know there are plenty of ways to help prepare yourself and your house for guests, whether it is the holidays or anytime during the year, these are just some of the ways I have tried to ensure my guests had a good time when they visited.

Wishing you a lovely holidays, hope that you have a wonderful time with your family or friends and thank you for your support during this year and beyond, it really means so much to me! Every comment, message or email doesn't go un-noticed and are very appreciated.


Merry Xmas and a Happy New Year from my family to yours (2016 photos)

p.s what other tips do you have for getting your house ready for guests or to ensure guests have a good stay? Let me know in the comments

Posted by: Talya AT 09:31 am   |  Permalink   |  0 Comments  |  Email
Monday, November 27 2017

I am feeling a mix of emotions right now, I am feeling so relieved that the magazine is finally ready to be published and shared with the world... but that part terrifies me!

I feel guilty for the delay, health issues happened, but I still worked hard when I could manage to get the issue out.

I also feel mega proud right now!

I hope you enjoy this issue, there is some great content in there and work for issue 3 is underway (summer/xmas/holidays issue) so if you have any content you want to contribute get in touch asap, or keep an eye on the facebook page too.

If you're a business and wanting to advertise - we offer affordable advertising options and also offer affordable graphic design too. I am also open to collaborations, just get in touch.

I am really hoping you love this issue, there are 2 giveaways too.

In this issue I launch my NEW Stoma Diary, this is an ebook that you can download for FREE  and print or edit via your computer or tablet. It is aimed at helping NEW ostomates navigate the first 6-8 weeks post op and as they approach surgery. I have had my own stoma nurse look over it and she excitedly shared it with her colleagues too.

So sit back with a cuppa and have a flip through.

I have tried to get more male relatable content out there but struggling to get the guys to contribute, anyone that knows me knows I am stubborn and persistent and I endeavour to have more male content in here, I am trying my best so please don't be disheartened.

Finally, If anyone is wanting to join the team on a voluntary position I would love some social media help and develop a content strategy etc, I recently posted about this on the magazine facebook page too.

Anyway, have a wonderful night and I will anxiously await your feedback.

Posted by: Talya AT 12:02 am   |  Permalink   |  0 Comments  |  Email
Saturday, November 11 2017

CW: This post talks infertility, miscarriage and other heartbreak caused by having a faulty body


Our family photos Xmas '17, how tiny and adorable he was!

If you follow me on social media, no doubt you have met the gorgeous little furball Dusty who is a ragdoll x blue russian kitten. He has the most gorgeous blue eyes and has made every day over the past year filled with love, fun, adventure and cuddles.

Wait, 12 months on, is he still a kitten or is he a cat? I hate to think of him as a grown cat as he is wholeheartedly my little furbaby. I still like to think of him as this tiny little ball of fluff that relied on me.

Dusty has filled a void that I have had for far too long, and I know Russ will say the same.

Dusty is our baby, he is our child we never had and he is a spoiled little shit. I say that with lots of love. He has destroyed everything because he can, he makes a habit out of biting my ankles or backs of my knees, and he just throws tantrums if he doesn't get what he wants.... I love him, I do, but some days he can be a handful.

However, I know the huge benefit Dusty has had on my wellbeing, I believe he is a major part of why I am still here, he has filled our home and hearts with so much love, laughter, joy, and I know the last 12 months would have been a lot more lonlier and isolating if it weren't for him.


Russ and Dusty Hi-5ing as they visit me in hospital

Our Hopes for a family:

Russ and I have always wanted children, even before our first date 8 years ago he said "I am looking to settle down, to have a family, to find the one person to spend the rest of my life with". At the time the then 18-year-old me was like "hmm ok we'll see" it wasn't in my life's plan to have kids until I was at least 24, married and had a career and house. But then once we got to know each other, he supported me through several brain surgeries a month after we started dating, I knew there was something special about Russ and when he proposed a couple of months later I said yes. I was excited for what the future had in store for us, it was my chance for a new beginning and hopefully a family.

We had one misscarriage in February Valentine's Day (was the day of our engagement party) and it was the only successful attempt. We were shattered. We were hopeful that we would be a family one day.

Later that year we got married (July), then sometime after the wedding we learned that my dad was terminal with bowel cancer at 39 years of age and that it were a rare hereditary form that it was high probability that I too shared this gene. 

My doctors forewarned that I were likely to have cancer myself but wouldn't be until around 30 (boy they were wrong) and suggested we try and plan for a family right away and live our lives before surgery and cancer took over.

Our hopes and dreams as newlyweds of having the family we longed for were shattered now that we were gambling the life of a future child in our hands. We started meeting with geneticists, specialists, gynecologists, fertility specialists and counsellors to fully go over our options.

In 2012, 2 years after my diagnosis of FAP, I had investigative surgery of my pelvic area including my bladder and bowel.

I woke from surgery being told that I was in a medically induced menopause and that on top of the FAP I had severe stage 4 endometriosis and the chances of having a child with IVF was less than 1% and would be too costly.

So it was then that we put the plans of us having a family of our own to rest, we then said we would foster, adopt or get a kitten as Russ isn't a dog person.

In 2013, in the months that I were free of bowel cancer and rejoicing for my new lease on life after having surgery to have an ileostomy, we started training to be foster parents. In 2014, we learned of the new tumour where the bowel used to be and was told that I now couldn't be a foster parent until I had been 5 years cancer free and had a stable life - bringing a kid into a house with a sick parent could be traumatising for the child - so we said we would wait for that day to come.

Which brings us to 12 months ago:

We had moved into our own home, now as home owners we could have a kitten. We were scrolling through facebook one day when a lady posted a photo of Dusty and said he was available in 2 months time (late october). I quickly messaged expecting him to have been sold already, but to my surprise he hadn't found his forever home yet. Later that day Russ dropped by on his way home from work and paid for him and had his first cuddles with him.

Russ was completley smitten and in love.

It filled my heart with so much joy seeing the bond they've shared over the past year.

Dusty cuddles up to me a lot through the day and the night, but as soon as Russell's alarm goes off he shoots off the bed and meows all excitedly as he knows he is about to be fed. When Russ comes home Dusty runs to the door to greet him, Russ will pick him up for cuddles and often rolls around on the floor playing with him. 

It is a comfort some days knowing that Russ will not come home to an empty house once I've died, that he will always come home to seomone who loves him and needs him and I think (hope) that Dusty will be a great comfort for Russ.

I know a cat isn't a child, but Dusty is our little baby. He is funny, mischeivious, smart, playful and loving.

Dusty is so clever! He plays fetch. He learned when he was really little that I spend a lot of time in bed when I have bad days, so he learned if he wanted someone to play with that he needs to play on the bed as I am laying down, and it has worked really well.

He at times has sensed when I am upset or anxious, he often checks on me during my bad days, he also sometimes wakes me up by poking me in the face with his fish-on-a-stick-toy, but he has made me feel full and loved. He is so protective of me it is adorable.

I now feel like we are a family and we have Dusty to thank for completing our lives.

I know I post a lot of Dusty posts on social media, but most days he is the best part of my day and I want to share that with the world.

I always had been told that pets are theraputic, but until this past year I wasn't a believer. I get asked why I haven't died yet and what has changed in the past year and my answer is Dusty.


Have you got a little furbaby? Have you found the benefits they have made to your health and wellbeing as well?

Posted by: Talya AT 05:40 pm   |  Permalink   |  1 Comment  |  Email
Friday, November 03 2017

Recently, I was asked to be the Australian writer and contributor to OstomyConnection.com which is a site dedicated to being a hub on all aspects of ostomy life.

I was asked to write an article on:
20 Aussie Ostomates who you can connect with on Instagram.
You can read the article by clicking here.

Despite there being approximately 44,000 Australians living with an ostomy, it can at times feel frighteningly lonely and friendless, especially if you live in remote or rural areas of Australia (like myself). 

When I was 21 (in 2012), I was told that I needed a permanent ileostomy due to early stages of bowel cancer. I didn’t know anyone to help me understand ostomy life, especially my concerns as a young person (moreso, a young female) and navigating/living a fulfilling life. So I sought out a local stoma support group but at the time there was a 40 year age gap with the nearest age to mine, which made me feel more alone and unable to relate to them or their lives.

So .... I turned to the internet - particularly social media - in a desperate search for proof that a life can still be lived with an ostomy. At the time there weren’t many bloggers or people publicly sharing their life with a stoma, so it was hard back then to find “your people” or someone who just got you and could completely empathise with you.

Today, Instagram has a community of over 800 million users!

That is 800 million chances to find your community that you want to connect with or to be inspired by…. After all, a friendship is born at the moment that one person says to the other “What! You too? I thought I was the only one.”

One of the perks of social media is the ability to connect people and to help them feel less alone and isolated.

Whilst I know that there are thousands of Aussie Ostomates on Instagram, here are my top pick of 20 fellow Aussies that I know you’ll not only find relatable and awe-inspiring through the lives they lead, but that you’ll also love. Each contribute vastly to ostomy life.

I look forward to bringing you many more articles.

You can read the post here https://ostomyconnection.com/news-and-culture/20-ostomates-in-australia-to-connect-with-on-instagram 

 

Posted by: Talya AT 12:54 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, October 31 2017

Russ The Ostomistic Husband and I just got home from a last minute trip away to Newcastle (2 hrs north of Sydney), which is approx 6 hours south from here if you get a good run of traffic, which thankfully it was a good trip. But.... although it has been refreshing for my soul and spirits, I am absolutley buggered and finding even 2 hours in the car to be taxing on my body (let alone 6 hours). 


Newcastle Headland, (bucketlist to see a sunrise from here)

Regardless of how much pain I am in right now, it was still worth the quality time spent with Russ yesterday.

Russ needed to go down for training for work, as he had to be there at 9am this morning I suggested we head down and stay the night to avoid him leaving at 3am and driving all day then working and driving all afternoon home... being a P plater I have total faith in his driving but I just thought it is a long way to go on his own, so I tagged along too.


Is it a road trip without snakes?

It was Russ' days off work on Sunday and Monday anyway, so we thought we might as well head down Sunday to get the driving done with so we could spend together all day yesterday, which was exactly what we both needed.

There were things in Newcastle that we wanted to do and were on our bucket list (we do hope to come down next year to do part #2), while we didn't get to experiencing everything we still had fun - he always knows how to make me laugh. 


The gold studded bed head and comfy bed

Russ thanked me for yesterday (while we were at the hotel last night and again today on the journey home): he said it was nice to just have a day where we could just spend time together without the unfriendly reminders of our reality or our lives back home, that for one day, we were just a normal married couple madly in love and hanging out. 


The Quote on the wall at The Lucky Hotel

There is a hotel I have stayed in before that is called The Lucky Hotel, it is this boutique hotel on top of a pub, but it is sooo luxe. Think marble tiles in the bathroom, stone vanity, nice roomy shower... and each room has a different quote about luck. They've won all of these awards and despite us being only on the floor above the pub we couldn't hear anything - there was even a wedding on too!


The fun lobby at the hotel 

Did I mention it is totes affordable? It was $159 and $179 for our stay, compared to another hotel we were looking at which was around $300 a night by the time you added in brekky and valet parking. We essentially could spend 2 nights at the hotel instead of the 1 we had budgeted for at the fancier hotel.

It was the only reason we could afford 2 nights away last minute.


Luxe little ensuites, love the marble

So we left the hotel and headed to brunch, there is this Star Wars themed restaurant 'The Empire Coffee Co' which we had wanted to go to for a while now, Russ looked like a kid in a candy store! He was taking selfies with the lifesized statues and was putting nerdy snapchats up about star wars and coffee. I knew he would love the cafe. The food was delicious too!

We had planned after brunch to go for a nice long stroll up the wharf and around the harbour, even going to explore the headland too. But walking from the car to the cafe wasn't very pleasant, it was 35'C and very windy with a dry hot heat.


LOVING my new long sleeve rashie from SunSoaked

So we decided to postpone the walk until part 2 of our Newcastle bucketlisting trip next year once the weather cooled down and instead headed to Kotara shopping centre to enjoy the aircon.


Love the hidden little gems around Newy CBD, like this street art

We have both been wanting to see Thor: Ragnarok and found they had a Gold Class deal for extra $5 above a normal ticket we could sit in the comfy recliners and enjoy the movie reclined. This was the second time I experienced Gold Class, the first was earlier this year in March when we saw Beauty and the Beast. I do like putting my feet up, they were incredibly sore and puffy by that point and the heat wasn't helping, so it helped a lot to have some relief.

We don't have a Gold Class cinema close by, or one that I can go and enjoy in my wheelchair, so the movies is something I can only do when we go to the bigger cities and it feels like a reward somehow for good behaviour, so we don't get much of a chance to go to the movies together (on a date) so we love when we can. I do wish it were closer, I am excited for all the movies coming out I would like to see them as they are in the cinemas not when they're available on DVD. But, at least it is a lovely luxury to enjoy when we go away.


Love the comfort in Gold Class

The movie was really good, there is a lot of humour in it which is unexpexted for an action movie, I quite liked it. Who am I kidding, how could you not enjoy Thor without a shirt on amiright?


The beautiful trees

I stopped at the Christmas trees that were all lit up and looked beautiful. I love Christmas and I love going places and admiring their trees, if I could manage to put the tree up on my own I would. I just feel so happy this time of year, it feels a little bit of magic is in the air.

Next on our agenda was the most excitement I had felt in a long time!

... I got to hold a $183k pink Argyll Diamond in one hand and a $93k pink Argyll diamond in the other! My heart was racing and Russ said I had the biggest grin on my face!

I have had it on my bucket-list to see an Argyll pink diamond, thinking in order to see this rare and exquisite gem I would need to head over to WA to the Kimberley region and knowing that travel that far is highly unlikely (when I struggle making it 6-8 hours) that I wouldn't get to see one.

So... imagine my delight when I see this sign saying "exclusively for today only we have the Argyll Pink diamonds in store".

I squealed with delight and Russ wheeled me in to the store.

I was even more excited when I got to try on and hold the jewellery! .... and then holding the precious diamonds was unreal and I am even smiling right now just something I had always wanted to see for myself. I wasn't prepared for it to be in Newcastle.

When I heard in 2011 that the WA mine was shutting in 2020 and that there wouldn't be anymore of these precious diamonds I always said if I won lotto I would buy myself something as an investment as the price will increase after 2020... the WA mine produces 90% of the worlds total Pink Diamonds!

I am still working on my million dollar idea, but the sparkle on the ring was stunning. The ring I admired was worth around $43k, the earrings were $60k, then there were the gems on their own.


The beautiful wharf

It was just a good day yesterday, just Russ and I spending quality time together and yesterday I felt my spirits were more energised (even though my body is tired) it was nice feeling excited again. I do find when I can find the chance to live and enjoy life, I feel happiness and have adrenalin... living life is my own version of thrill seeking in a weird but magical way.


All ready for the trip home, until next time!


Things we wish to do on part #2 are:
- Visiting the botanical gardens
- Visiting the harbour and going for a walk
- Seeing the sunrise from the headland
- Visiting the museum
 

Posted by: Talya AT 03:16 am   |  Permalink   |  0 Comments  |  Email
Saturday, September 23 2017

June last year (2016), I was told I had approx 12 months to live. I then wrote a bucket list of experiences and achievements I want to do and started working my way through it all. I had so much fun living and loving life that the 12 months became a blur. It took me to learn I was dying to really start living life, ironic hey.

One thing I have always wanted was a tattoo, it was more working up the courage to do but also finding something that resonated so deeply to me. Having struggled to feel this conntectedness between ideas, I thought I might best get something custom drawn.

I approached an artist Tasha from Jubly Umph that I loved her work and asked her to create something for me that is so personal and is something that I could continue to feel inspired by everyday. She began working on sketches for me and after some tweaks we had the perfect drawing.

I was so excited when Tasha asked me to write a guest post about my experience for her blog, you can read it here. I talk about my inspiration behind the design and why a tattoo was something that meant so much to me.

When it was my birthday back in March I had some family and friends gift me money with the specific intentions it be used on a tattoo. One of my gorgeous friends Bee gave me an envelope that said "open on the day you go to have your tattoo done" and inside was some cash, I thought it was the sweetest and thoughtful gift.

So the day before I had my tattoo done I got a call to say there was an opening for the next day, I was pretty excited and incredibly nervous. Russ came with me and I am so glad that he did.

My tattooist Megan - turns out is my stoma nurses daughter, what a small world! 

I had been researching her studio and work for months, then one day I was in talking to my florist about my birthday the flower crown workshops and I bumped into Megan she gave me her card and I realised who she was and kind of strangely fangirled as her work is so good. So I had complete faith in her work, I was just nervous as I didn't know if it would hurt or not!

The day for the tattoo came, I chose to get the top of my arm done as it is a big design but also so on my bad days I can be laying on my other side and see it and be reminded of my strength.


The blank canvas

A stencil was made of the design and placed on my arm to check for placement before the outlines were done, but also to check if the scale and size was big enough. We did this a couple of times as the positioning was off, only because of a mole and scars Megan realised she could work these into my tattoo design.


The stencil the second time round

Now came the outlines, it didn't hurt as much as I thought, just like scratching really. The outline was finished, I got up to stretch my legs and to have some pain meds as I was sore from tumour pain before jumping back in the chair. I remember feeling so proud and excited! I felt on top of the world!


So proud!

Now came the next part, the colour! 

BOY DID IT FREAKING HURT!

I was doing okay until about a third of the way through and I was just bawling my eyes out. Russ was standing next to me holding my hand and I was a blubbering mess.


See! Blubbering mess, but I felt so proud at this point.

I now understand why you get it done in stages, I just felt like I was buff but I felt like a sook and was so embarrassed that I must look weak. I left and got in the car and just cried and sobbed, it hurt for a week or so afterwards too. 

Best thing to help soothe the itch is this ointment from Woolworths called Dr Pickle, it really helped to moisturise it when it was dry and helped to fight the urge to itch it too. 


Comparison of the tattoo and the artwork!

I was really happy with the tattoo and the artist really did an amazing job at bringing the artwork to life. If you wanted to see more of Megan's work you can find her on Instagram under @meganlouisebucks

It has now been 5 months and the tattoo is looking so good!

I have had a lot of compliments on it, have had a few opinions from others but at the end of the day what I choose to do with my body is my own choice and when people get too judgey I just fired back with "I am dying so who really cares HOW I choose to live out my life, STFU". I am so over comments telling me how I should live out my days. I am only trying to do what makes me happy and to squeeze a lifetimes worth of experiences into the matter of months and days, so I am doing my best.

One shop I went into the salesguy was telling me how trashy I was because I had a tattoo and asking Russ what he thought about his wife ruining her body like that and how it reflects on him, Russ was pretty great and had my back but it took so much strength to not punch him in the face. Like seriously, how does me having a tattoo affect my ability to be a customer. Do you want my sale or not? 

I did hear comments like "your dad would be so disappointed in you and would be rolling over in his grave, if he were alive he would disown you". That one comment stung though, but I do like to think that if dad were watching from wherever he may be that he would be proud of me for choosing myself and for choosing to do things that made me happy, I would like to think that he understood out of anyone how hard it is to go on living your life knowing that anyday it could end, I would like to think that no matter how I lived my life in my final months that he would proud of the person I have tried to be... I always put everyone else before myself, so I wanted my bucketlist to be about me and doing things I wanted to do.

Before 12 months ago I didn't really feel that I had any idea or sense of who I was as a person, I do feel that I am starting to find myself and finding how amazing life is when you stop and look around.

It took me dying to realise just how beautiful life really is.

But my tattoo has become a reminder for myself that I am a badass and that I am strong, on my worst days I need this reminder, some days I need to know that beneath all these health issues there is still a young 26 year old woman trying to hold on.

Guest post on my tattoo story 
Design by Jubly Umph Facebook @jublyumphart Instagram @jublyumph
Tattoo was by Megan from Absolute Tattoo Instagram @MeganLouiseBucks  
Tattoo Studio: Absolute Tattoo Woolgoolga

Do you have a tattoo? Was there a meaning behind it?

 

Posted by: Talya AT 10:19 am   |  Permalink   |  0 Comments  |  Email
Friday, September 22 2017

WARNING: This post discusses death, dying, suicide, euthanasia and could provide a trigger. Continue to read at your own risk. Opinions discussed are of my own and I have no paid or unpaid political affiliation with Dying with Dignity NSW, nor have I been asked to write on this topic. This is purely something that I feel deeply about and it is a topic I have been wanting to write for a long time. These are my views so please be respectful

I am not one to usually talk politics with you, but this is something that is quite personal for me and something I have had discussions with Russ at length about. It is a topic that is misunderstood or misrepresented in the media, in order to create fear and hate and divide people. This is more than just a topic for me, it is something I think about daily, and that is that I deserve to die with dignity and compassion.

This week (on the 21st of September) in NSW legislative parliament, a bill was presented to the NSW upper house called the Voluntary Assisted Dying Bill 2017. This bill was created to help terminally ill adults to die on their own terms with compassion, respect and dignity.

There has been many heated debates referring this to "euthanasia" which is misleading a lot of people, politicians included, by the myths and fear mongering tactics employed by those who are so loud in their opposition of this Act. According to "Assisted Dying: Setting the record straight" an e-Book written By NSW Dying with Dignity, euthanasia is referred to as "life ending medication administered by a doctor". Under the proposed bill in NSW, a person who is at least 25 years of age, of sound mind, who is living with a terminal condition and is estimated to be in the last 12 months of their life based on the opinion of several medical experts, and is Experiencing severe pain, suffering or physical incapacity to an extent deemed unacceptable to the patient, can SELF-administer a lethal substance to end their lives and if they are unable to they can nominate a doctor or loved one to help them.

There is a need for this, a need for a law that protects and has the interests of those (like myself) who are dying from cancer or other terminal illnesses to die with compassion on our own terms when we deem the pain and suffering to be too much AND give us dignity in our deaths.

I have read reports of persons ending their own lives under horrific circumstances as they can't face this anymore. I know there have been times I have considered this, not out of depression but merely out of desperation. How can I go on knowing that the pain and my quality of life will only get worse - I didn't have any hope for the life I could still live as it is so hard... then add the feelings of guilt knowing you are hurting those you love and the FOMO (fear of missing out) on life and it can be too hard to bear. So YES, I can empathise with how someone can choose this.

Then referring to the above comment can lead to families suffering after witnessing a loved one's traumatic or "bad" death. By choosing this law families could ensure they get to say goodbye, a person could feel at peace themselves knowing they have no unfinished business, a dying person and their loved ones could make a beautiful moment or ceremony or way to commemmorate a life before it was over and it could help them to have control over their deaths and give everyone a better experience of the death.... I am not saying the loss of a loved one is easy by any means, but it could help give comfort to KNOW that they were not in pain, they were happy and they were surrounded by love.

I know my biggest fears are dying in pain and dying alone.

It scares me everyday.

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But at the end of the day it comes down to the fact that I want to and believe that I should have the ability to die with dignity.

I remember back to my first university lecture on Ethics and the law when I was studying Nursing and the topic came up on Euthanasia. The whole room was literally divided and there were many debates, we even had to do an assignment on the topic. I got a High Destinction, but it was such a hard topic. I know then my heart was divided, I was being told that "NO, it is illegal" but my heart felt that morally it was unfair that someone should die in pain.

This lecture was before dad's cancer and many years before my own, but regardless of my own experiences of mortality, I do still believe that there can be dignity and compassion and respect in dying.

Because there are so many myths out there, I want to try and dispell some, to help show this bill won't affect anyone other than those who are terminally ill and living in their last 12 year of their lives.

Firstly, I am not saying my life or those with terminal cancer isn't worth living or anything like that, I believe in living life to the full and strongly belief life doesn't have to stop being lived. I plan on squeezing the most out of my life, and it is something I try to do everyday, but I know there will come a point where I am too sick and I am just simply existing and suffering in pain and only then is that when I want to say "hey let's do this". If this bill was already law (and it is something I have discussed at length with Russ) we would wait until we knew there wasn't much of my life left.

Truth be told, I have been told that my death is likely to be extremely painful and that pain meds won't help me... My pain levels now are barely managed and I am on high dosages already, knowing my pain is going to be tenfold compared to what it is now scares the crap out of me... I would much rather die happy and at peace... wouldn't you?

☟ ☟ ☟ ☟ ☟ ☟

Myth: This will hurt those who are vulnerable within the community.
I know there are a lot of arguments against in the community as it could hurt those who are vulnerable such as the elderly or those with a disability, those who are of low socio economic status or even those with mental health issues.
Fact: To be considered under this bill you HAVE to meet criteria including being in the last 12 months of your life and living with a terminal illness, be confirmed to be eligible by not 1, not 2 but 3 different medical professionals including your GP, specialist and a psycologist.
Fact: YOU CANNOT JUST REQUEST IT if you do not meet the criteria

Did you know? That under this bill you can change your mind at any time too. You won't be forced to proceed if you no longer wish to. It will always come down to your choice, afterall it is the point of all of this which is to give you a choice in how you die if you're palliative and 12 months or less to live.

Myth: Assisted dying is suicide, legalising it will ruin society as a whole
Fact: People who are dying and want to control the manner and timing of their death are not suicidal. I know I am not suicidal but I am going to die, I just want to die on my own terms and have control. 
Fact: Having a choice is empowerment, having dignity is empowering.

Myth: A doctor can kill any patient and can cover it up by saying it was an assisted death
Fact: Only a patient will be administering the medication and would have met strong criteria as well as having 3 medical practitioners sign off, it isn't something that can instantly be done.
Fact: as this is patient administered it removes the need for a doctor to assist, therefore they are not going against their hippocratic oath of 'thou shall do no harm'. Again, it is not causing harm it is offering dignity.

Myth: Doctors don't know when you'll die, only GOD knows, no one can know these things so don't listen to a doctor they are wrong all the bloody time
Fact: You can look at a patient's scans and assess an esitmated life expectancy, yes nothing is ever certain but doctors know what signs to look for in someone who has 12 months to live.

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I could go on about all of this for a long time, but you can view these myths and more in the "Assisted Dying: Setting the record straight" an e-Book written By NSW Dying with Dignity, to learn more about how this law WILL ONLY AFFECT those who need it.

I know it is a heated debate, I know some oppose it under religious beliefs, but do have a read up of just how important and life changing this could be to someone like myself - a young person dying from cancer.

Dying at 26 sucks enough as it is, it is painful, it is scary and most of all I have no control or relief. I know at some point in the next 6-12 months things will get a lot worse and more painful and I just wish that this was available if I felt it was too painful. Just to know there is an option to give me control in the end would give me hope that I won't be in pain forever and I could be at peace in the end.

I know I would only do this IF or WHEN the pain got too much, I would try and hold out as long as I could before. 

Please visit Dying With Dignity NSW to learn more or to follow the progress/updates of the legistlature or to read other people's stories on the bill.

Regardless of your personal stance on the issue, do consider reading up on the benefits this could help to people like myself dying from cancer. It might not be something that will be able to assist me through my death unless it is passed within the next 6-12 months, but it is something that could at least help those in the future to have dignity in their death.

P.S If you feel that this bill should be passed please consider writing a letter to your local MP to voice your concerns and to help get this bill passed. Click here to find out how you can help! 

Posted by: Talya AT 10:40 am   |  Permalink   |  0 Comments  |  Email
Thursday, September 21 2017

This is not a sponsored post, we purchased the car using finance through the car yard, not a brag post either just celebrating a milestone I never thought I would be alive to see.

A year ago today I experienced 3 things I never thought I would ever live to experience such as purchasing a new car with a big red bow on it or even buying my dream car of a Hyundai ix35...

One was also driving a car again. 18 months earlier I was unable to drive a car due to a large rockmelon sized tumour that sat under my stoma, As the steering wheel already sat on my stoma and stomach already it was near impossible to drive safely or comfortably. Then I got the PICC line in and that made things difficult, then surgery and chemo again I really wasn't up for driving at all. Plus everytime I drove it was painful as I felt every bump in our old car.

So imagine how excited I was to drive again!


Our new car 12 months to date, click here to read about why we got a new car

It was great timing too as we had just moved out of town Russ needed to take the car to Coffs for work and I was stranded at home without a way of getting to the shops or doctors/hospital if I needed to, so a second car came in handy at times.

I don't think I could have lived and experienced as much as I have this past year without this car, this was one of the best decisions we have made. Yes we were struggling week to week drowning in all the debt, but the car gave me so many memories and opportunities to get out more.

This car has seen so many adventures and so many conversations, and many games of i-spy. We started our own game versions including "name all the different types of wood" and "name all the different names for water" and so many other nerdy variants of I-spy. Russ even compiled a playlist on his phone of perfect Talya and Russ road trip songs.


Road trip time with my trusty Batman suitcase!

I never realised a car could help me to live life as much as this new car has, being higher off the ground it is a lot easier for me to get in, as it is also higher it is easier for Russ to get the wheelchair in/out so he is more inclined to want to go out. 

The car even has butt warmers, these help to keep my back and bottom warm which helps with pain, stiffness and inflammation. I only discovered this 2 months ago and would have made all the long road trips and day outings better if I knew earlier!

I have been to Sydney 3 times on bucketlist adventures for the Dixie Chicks, Royal Easter Show and Vivid. We never would have gone to Sydney via road if it weren't for this car, our old car wouldn't have made it and only option would have been to catch the train which is double the time. 

This car has brought so many beautiful memories and I look forward to more with Russ thanks to Betty our ix35.

Posted by: Talya AT 12:16 pm   |  Permalink   |  0 Comments  |  Email
Saturday, September 16 2017

Is it only me who feels like the last year has been a complete blur? I know this is how it feels for me! I started writing this post back in 2015, then wrote more a year ago but only now have I finished it. I know it is long, I am sorry, but excitedly it was something that took time to write and unfold. I am not writing this as a brag post, merely sharing the process and how we got to building.

12 months ago we got given the keys to our first home... I remember this day so well, as if it were only yesterday. Gosh, that year has gone so fast, crazy!

12 months ago I didn't even think I would be here a year on to celebrate!


The day we finally moved into our first house after years of hope for this day! I was so, so happy and proud too!

We finally were getting our house, a house that we worked hard and sacrificed over years to get, the house that I thought I wouldn't be alive to see. It was a massive goal and dream of mine (well, ours) to have our own home.

I know a lot of people have judged us for "not really doing it hard " when we were able to build a house and loved making up rumours that we were rich, but we weren't and aren't flushed with cash by any means at all. We saved and sacrificed and worked hard over years to get our own home and we had our fair share of setpacks and hardships during those years, but we never gave up hope.

I have copped a lot of flack on my blog and my facebook page about building and buying our house, I have been told I am a fraud, I have been on the end of horrible jealousy and judgement when inviting people into our home.

While I acknowledge that yes I am fortunate to have my own house, I really don't deserve the vitriol and to be made to feel ashamed of having my house or that I could achieve something that I have always dreamed of doing which was to be a first home owner.

I acknowledge that it is very unaffordable to live in places such as Sydney or Melbourne or Brisbane and it is harder for first home buyers to afford their own house. We live in an area of rural NSW where house prices are a fraction compared with those in the bigger cities.

So this is not a brag post in anyway, it is a post that showed our story to how we remained hopeful that one day we would be lucky enough to be home owners. A story of how we eventually got to something we talked about for years. A story that I want to share of our house and how it came to be....

It was cheaper to build a house than buy one, but it doesn't mean we aren't still struggling each week to make ends meet. I still don't have any life insurance and still haven't gotten my super out, we are still drowning in over $15k in credit card debt. 

☟☟☟☟☟☟

But out decision to have our own house came down to several factors:
Interest rates were low and affordable - could coast around same to rent as it was to own our own place;
we wanted to secure our own house before the market is too unaffordable to us;
we were sick of paying off someone else's mortgage paid over $150k in rent in our last house;
✘ we wanted to move out of Coffs, to settle down and build our future we dreamed of;
we were sick of rental inspections which are inconvenient especially when you are sick and dying;
we wanted to stop renting and feel like we have something to show for our life;
we were worried about having to suddenly move at a moment's notice, especially if I was on my death bed;
we wanted a pet, I needed company and Russ too when I died;
we no longer felt safe where we lived, so we wanted to move;
I wanted to live in my own house somewhere I could make a home;
✘ It was always a dream that I could have my own place and host Xmas lunch;
I needed stability;
✘ It would be a dream come true and massive bucket list goal too!


The text I got from Russ the day we got the keys! Aww cute as!

How we got here:

We would apply for a homeloan every 6 or so months since early 2010 and usually would be declined and told to come back again in 6 months and try again.

We were fortunate that with Russell's income, we had worked off some of our debts to look more appealing, the little we had saved over the years and the low interest rates meant that the banks were willing to offer us a homeloan, we weren't even expecting a yes that day, I remember we went home and we cried and hugged for hours that FINALLY we could be getting our own place.

It was a dream come true, really!

But for what we needed there wasn't anything in our budget that didn't require a lot of work and rennovations which was money and stress we couldn't afford. Also, because Russ was still on his L plates or his learner's license we were more or less confined to living within walking or riding distance to work, which limited the area we could look at.

We also wanted a house that was:
flat levelled;
in a nice neighbourhood;
with a garage (double preferred);
a seperate lounge to the kitchen/dining;
a nice generous bathroom with a wide shower that could fit my shower chair plus the room for someone when assisting me, plus a bath for Russ (bonus points if it were a spa);
a toilet that was spacious in the room around/in front that I could put a little shelf or table in front to help with bag changes;
at least 3 bedrooms so 1 could be a study/craft room and 1 a guest room;
easy to maintain yard;
aircon;
and be NBN ready.

If we were lucky  to find something that ticked most of the boxes it still needed a lot of work done.

I know it sounds like surely a lot of places would easily  fit our budget, but with only a budget of $350-390k our options really were limited to:
areas that had high crime rates;
where insurance prices were sky high;
areas prone to flooding;
or even a unit where we couldn't have a pet (I longed for a little companion to keep me company)
✘ one place we were almost considering buying the strata was over $12,000 for the year. 

Deciding to build over buying an established house:


When we first got our keys! Proud hubby!

We had mostly given up all hope of having our own home, then the bank manager said these 5 words: "have you thought about building?" and it changed everything. Yes, we had thought about building and No, we didn't think it were possible based on quotes we had years ago the house cost more than our entire budget!

We had always hoped to move out of Coffs at some point and preferably would move to Woolgoolga. We had always felt Woopi felt more like home for us and Coffs was just far too busy, noisy and crowded for our likes. It was close enough to Coffs if we needed doctors or work but far enough away. It is only around 20km north of Coffs Harbour.

When we looked into land, stand alone house costs to build or house and land packages in Woolgoolga (and surrounds) we noticed that the land outside of Woopi in older beachside towns/suburbs was cheaper too approx $200-300k difference in price than in Woopi but only 5km away.

Russ was keen on the move too and I told him he wouldn't move until he had his P's, so he became more committed and took up driving lessons and actually would drive most places to get his confidence up. Excitedly he got his P's first go in June last year (2016), I cried tears of joy and relief and was so proud... been a big year for milestones for us both!

We found this perfect house and land package that fitted our budget perfectly that we drove out to Woolgoolga that next day to enquire. We got to the real estate office and told that the contracts were exchanged earlier that day and that it was now off the market.

I felt a bit bummed out, it was the last available block in the estate, I felt like the hope I had for our future was gone.

But, alas, there was hope again:

On the drive back to home (Coffs) I called into the display home for the builder the earlier package was from and wandered inside. I told the salesman we were interested in the property that was sold earlier that day and if he knew of any other developments coming up that we could secure something early to avoid missing out again.

He replied: "I think I have something for you", feeling hope returning he ushered us to have a seat at his desk. He pulled out the estate plans and circled LOT 14, he said "a block has just become available today after a couple pulled out due to finance falling through, it is double the size of the one you were keen on for a fraction of the price. It is in the first stage release and building can commence in the New Year". 

I was so surprised when the builder said the house could be built for $235k! I almost fell off my chair. It included rendering the house and we opted to get airconditioning installed post build as we ran out of money in the budget initially. We had to pay for extras like fencing, tiles on the outside patio, landscaping, turf etc.

It was 16 September 2015, (year to date later we got the keys and moved in) I was due to start chemo in the coming weeks and not knowing how long I had to live, we wanted to do whatever it took to secure this block and start the build, so we could move in the following year and thus ticking off another life goal of ours.

I looked at Russ and asked him if it felt right with him and he was definitely keen, so keen he handed me his credit card. We handed over the deposit they needed which was only $1k - and we just put it on the credit card so we didn't miss out.... and so the process began!

I think the sales person thought I was nuts for opting to build a house while undergoing chemo.

But you know what, I think the build was the one thing that helped me to get through chemo - knowing there was something so exciting to look forward to- it became the best part of my week driving out to check the house progress. 


First day the walls started going up!


Progress - Bricks stage!


Our house almost there just driveway to go

Which brings us to 12 months ago today!

The house was 3 months behind schedule which meant that it was 3 additional months we hadn't quite budgeted for with the additional rent and were struggling. We were paying rent of $375 a week plus the mortgage on a house we weren't even living in, and I was so stressed trying to pay all the bills and afford to eat that we added everything to the credit cards (which we are now drowning in debt to repay and get on our feet).

But the day for final inspection and key handover was finally here, after being pushed back weeks and even days that same week, Friday September 16th had arrived!

We had to be out at the house by 7am sharp ready to do the handover, Russ was having to leave for work by 8am and our furniture pieces (spare bed, lounge and outdoor setting) were due to be delivered at 8am too, the fridge and dishwasher would arrive at some point that morning too. It was absolutley pouring, so much rain and very wet and muddy.

When Russ left, it was just me at the house all day without a car as he took the car to work. I remember just walking around the house all day just feeling so surreal that this was actually ours. Everything looked so new and shiny and was too perfect to live in, I was scared to make a mess. That new house smell too, it felt like I were on holidays.

The builder gifted us a picnic hamper and wine, which came in handy as we hadn't thought as far ahead about plates/cups/cutlery! Was a very thoughtful and unexpected gift.

Wasn't long and I scratched the wall and the place felt like home.

Our first night in our own home:

That night we ate pizza out the back on the patio on the new outdoor setting (was our only table setting for a fortnight) using the picnic hamper the builder left as a gift for us, and we toasted to our first night in our house drinking homebrand pineapple fizzy!


*clink*

We slept on the spare bed that had arrived earlier that day and I never stepped foot in the old house again.

Never have I ever felt more at home before, but here I feel so happy and we truly love it here. It is so quiet compared to where we lived which was on the highway in Coffs Harbour at one of the busiest traffic intersections.

I feel healthier in this house too, which sounds strange to say as I am dying from cancer. But, the old house I think was making me sicker than I was already as the house leaked/flooded everytime it rained, normally in winter I struggled to breathe and my asthma is horrid - this winter I wasn't in hospital once! It is normally my second home in winter as I can't breathe. Could be there isn't the added pollutants of the traffic too here.

We just love it here!

It is only 17 minutes for Russ to drive to work of a morning and after he got used to the routine of driving of a morning instead of just walking or riding his bike he was fine. He is a lot happier here too.

Woolgoolga was where Russ called home for most of his life, he said it feels great being back.

The town is so welcoming and kind, everyone is always saying hi and smiling, kids you hear laughing and playing in their backyards, they too seem happy which makes you happy too knowing others are happy. 

But the 5 best things about finally having our own home is:
 I have my beautiful koi pond and garden;
 I am blessed with Dusty our furbaby;
 I can sit outside and it is peaceful and not horribly loud from the traffic comapred at our old place plus there isn't all the soot either ;
 I can finally hang up photos on the wall;
 
and last but not least
✔ I feel at home, I feel safe and I feel content.


Love the kitchen, doors are soft close too!


My perfect accessible ensuite, handheld shower head and spacious

It was a long road to get here, so many times we almost gave up along the way thinking that it would never happen. Never give up on a dream.

I had some people when we said we were going to build say to me "but you're dying, what is the point really?". How I saw it, was that no matter what my prognosis is, Russ still needs somewhere to live.... but why should I give up hope on seeing a dream I have always hoped to come true just because I won't have a long life. I know it is hard at times to understand why, but everyday that I am alive I want to live a life I love and that I am proud of... just because I am dying doesn't mean I stop wanting to live or to achieve my heart's desires... dying just made me want to move a lot of things along earlier than expected.

Please keep an eye out for more posts I am writing, I am catching up on over a years worth of posts. But if you want to ask advice and you haven't been able to find it on my blog feel free to contact me or check out my facebook page too as I often blog on there too.

P.s if you read this far, thank you! Russ and I are working on some more posts about the build and advice for others just lessons we learned along the way, so keep an eye out!

Posted by: Talya AT 10:14 am   |  Permalink   |  0 Comments  |  Email
Thursday, July 06 2017
I know I am pretty slack when it comes to updating posts on my blog the last few months, I have been having fun microblogging over at Facebook and Instagram as it has been more convenient to do updates than to do a blog post due to my health (and sleeping 20 hours most days). If you're interested in knowing or understanding more about what goes into a single blog post and why it can take hours to do one post, the wonderful Micheala from Not Another Slippery Dip recently shared an insightful post which you can read by clicking here!

Sometimes ​the internet can be a beautiful and magical place,
I know I have seen the impact and difference that social media and the internet has made to my own life and those around me, but to see complete strangers come together on several occasions this past year to help us is truly heart warming. People whom I only know from their online presence and otherwise would not have met them, have became good friends to me and have helped to create what has been the most amazing 6 months filled with memories and moments I cherish and I hope that they will too for years to come..... this post is just one of those magical moments created!

Background:

So all the way back in March (I told you I've been slack with my posts) was Russ The Ostomistic Husband's 37th birthday! What eventuated from me feeling guilty that I had ruined his birthday actually became one of the most beautiful gestures I have seen from people from all over the world!

On that same day I was being admitted to hospital for a bit of a respite break and to get my pain under control, it had been weeks since I had felt some relief.

Russ had to work that day, so it was a pretty early start for both of us as we packed my bags and Russ got ready for work and dropped me off to the hospital before he headed to work. Thankfully, my room was ready and available (surprised as it was 7.30am) and he helped me to get settled before he left.

But I felt immense guilt, it was his birthday... his day to be spoiled and showered with love. After all he makes me feel loved everyday and especially made sure I knew how much I was loved by others with the gofundme page he set up for my garden, so I wanted him to know just how many people care about him too.  


Russ visiting me in hospital with our furbaby Dusty! High-5!

What came next:

After chatting with my friend Kylie from Kidgredients in the lead up to his birthday, she suggested putting a call out on social media and asking people to write "happy birthday Russ from __insert location here__" and then take a photo of that piece of paper with a little bit of the background.

I went out to dinner with Russ the night before I went into hospital as we both had a free steak from Hogs Breath as our birthday steaks (a part of the frequent diners club you get a steak during your birthday month), so while Russ was at the toilet I took the chance to write my birthday message on a napkin and ran outside to capture it. In the background above is the iconic whale fountain.

What came next from my post was unexepected!

I was blown away by the response and all the thought and love that was being sent my way.

I even felt like I had travelled the world in one whole day, and seeing all the locations - my heart was heavy with love and excitement knowing how happy this made me feel- I knew Russ would feel the same way!

So once all the images were received (there were hundreds!) I then sent them over to Kylie who then turned the collection of images into a video slideshow!!

You can see the video slideshow here!

Sadly, not all could be fitted on the slideshow and if yours didn't appear please don't fret as Russ sat there individually looking at them on my phone for the next hour, so it wasn't forgotten or unseen and he appreciated it so much.

So 5pm came around and shortly after Russ arrived at my hospital room. I then filmed him and his reaction on facebook live, which you can watch below.


Russ loved the beatiful gesture and seeing all the different locations

Russ' response:

Russ sat there re-watching the slideshow a few times and even sat there for a long time scrolling through all the photos. If you couldn't tell from the video above he was in tears. The love he felt and knowing that so many people cared enough to take time out of their busy lives to do this, really meant so much to him.

Russ is one of those amazing guys who does so much for others without hesitation or needing to be asked and he doesn't ask for anything in return. He is the most loving, caring, kind and compassionate person I know: and he deserves to be recognised and rewarded, even if it was just for one day - his birthday - it just meant so much to him.

It is hard most days just knowing how tiring it is for Russ to work full-time and be my carer too, as well as dealing with the rollercoaster ride that is my cancer journey. Some days he is surprisingly strong, but other days he struggles and looks exhausting... it is hard seeing how taxing all this is on him, so I just really wanted him to know how loved and special he is.

I am so grateful to Russ and for everything he does, he is one amazing guy!


Russ is known for his background antics in our photos - here he is licking my hair, don't ask!

Thank you:

I just wanted to say a special thank you again to everyone who made this happen and a special thanks to Kylie from Kidgredients for all the time and love she put into the slideshow for us. Kylie has some delicious recipes on her site, especially for kids and lunchbox foods, even delicious snacks that are easy to make. Be sure to pop by her site - you won't be disapointed!

Kylie, thank you again for this special memory Russ will never forget, and most of all thank you for being one heck of a wonderful woman and friend. You helped me to create something truly magical. 

 

Posted by: Talya AT 08:18 pm   |  Permalink   |  2 Comments  |  Email
Tuesday, June 13 2017

 

“Life is 10% of what happens to us and 90% how we react to it” 
- Dennis P. Kimbro

Facebook memories can sometimes be a double edged sword. On one side it shows you the silly and mundane status updates that have you questioning what on earth you were thinking way back when. Then there are the moments that your life changed in an instant in what feels like a lifetime ago, but was in fact a year to date. It has the power of instilling those emotions you felt at that time and can feel like a sharp stab at one’s own heart.

Sometimes it can be bittersweet and reminds me of the little ‘wins’ in life: like the time my husband got his P’s after 20 years as a learner driver and I felt immense pride for him but cried tears of relief that I now can take a step back and not be the sole driver; or that time that I drove a 4 hour round trip to spend Good Friday with my family (having had chemo the day prior) and felt so sick, but I was able to hold my nephew for the first time since his birth and he smiled and laughed with me and in that moment I felt an overwhelming sense of love and happiness, as if all is right in the world, for that boy has the most infectious smile that makes you feel so happy.

1 year = 12 months = 365 days = too many minutes and seconds to be happy

Today’s memory however, was that it was 12 months to the day that I was told chemotherapy was stopped, that I had exhausted all other options and was admitted to hospital under palliative care… I was given 12 months to live.

I remember that day clearly, I had turned up to my chemo appointment thinking it was a normal chemo day. I drove myself to the hospital and had expected to drive myself home; instead I called hubby and told him I needed him.

I remember feeling so terrified, I was scared now having been given a timeframe and I didn’t know what to make of any of it. What if I did life wrong, what or how was the best way to spend each minute of the day, was there even a right way? I didn't know what to do, I just knew I wasn't done trying just yet.

But amongst all the fear felt, I also felt so much guilt. I felt that I had failed my husband, my family, my friends and myself.

Most of all I wasn’t ready for the end.

I remember crying so much that day just being held and consoled by my husband, we cried together and despite no words being spoken we knew what the other was feeling.

So I started writing my bucket list and planning how I wanted to spend the next year, particularly, my final moments. I began organising my funeral and how I wanted my life to be celebrated. I tried to include my loved ones in organising/talking about my funeral and joining me on bucketlist experiences in the hopes that it helped them somehow.

But one thing I knew for sure, was that I was determined to spend the next year living life as fiercely and to the fullest as possible. 

Choosing my legacy and how I want people to think of me:

I wanted people to remember me not for the hardships I faced but for how I chose to face life, I wanted people to not pity me but to think “hey that is one strong, badass and positive chick”. I didn’t want the next 12 months of health issues/decline and struggles to define me, I was determined to try and help others.

I feel like the last 12 months have been incredibly exhausting, I feel like not only have I struggled with daily challenges but that I also have lived the most I possibly could have too.

In the face of adversity and a time I should have been selfishly focusing on myself, I started a magazine for other young people with a stoma that has been well received all round but also what I hope will be my legacy.

But my determination to try and help others didn’t end there:

I have tried to empower people to make better choices through learning from my mistakes, I have tried to challenge people to think about how they talk to or treat someone who is chronically or terminally unwell, I have tried to help others feel less alone in sharing my story openly and I have tried to encourage others to live their life as they see fit.

The last couple of weeks I have been struggling with depression and felt myself in a downward spiral. I have been told I am dying too slowly, that I am a burden on Russ, that I am a fraud because I am not on my deathbed now; all in a matter of weeks. 

I am feeling a lot of self loathing (and as a failure) as I had hoped a year on our finances would be in a better state, that things would be less messy and more manageable for Russ to takeover. Yet, despite all the frugal efforts made, I still don’t feel things are better 12 months on. I had also hoped to be prepared enough and finish my funeral preparations by now too.... but things need a lot more working done. I also hoped to have saved/paid off my funeral too (I don’t know who I was kidding). 

I just regret not having life insurance so much, it could have made life a heck of a lot easier.

So please if you can learn anything from this story is to never just take one opinion/advice from a person who is “an authorised representative”, to always get another opinion. 

I HAD life insurance and when I stopped working I was told that my life insurance would be void if I had no EMPLOYER contributions made, that I couldn’t just make them (the contributions) myself. My insurance lapsed as a result. I later spoke to them again (6 or so months later) only to be told that the information I was told was incorrect and I could have made contributions all along and I would still now be covered or be receiving the benefits owed to me.

That one person who incorrectly advised my rights has caused so much stress and inconvenience to my life and while I have been told that person no longer works there I have been left to live with this mistake $600,000 poorer… I didn’t question the advice as it had come from someone at the company, that I assumed them to be right. 

If only someone had of told me to get a second opinion. 

Same went for my thyroid cancer, a respected endocrinologist told me there was nothing wrong with my thyroid and a week later I was in Sydney having thyroid biopsies done as it was actually cancerous, sadly in “the sticks” there isn’t always a second opinion you can get but I am lucky that I sought one in Sydney. Or that time I was told I was diabetic from a Doctor without any testing being done and started medication, it didn’t feel right and made me sick, I saw a different doctor a month later and was diagnosed with anaemia not diabetes. 

Moral to the story, if it doesn’t sound/feel right always get a second opinion. 

Your best teacher is your last mistake

Though all of these moments impacted on my life, I learned valuable lessons about myself or others around me.

If you do happen to make a mistake along the way just learn from it, don’t be too hard on yourself and be forgiving - you wouldn’t really be living if you didn’t make mistakes. Just learn from them and make yourself more informed for next time.
"A mistake is doing something once, the second time it is considered a choice."

So here is to time and life, may we all take everyday as it comes and try to stop every now and then to take it all in, or smell the roses as some say. Life is so precious and I am just grateful to still be here 12 months on and living by my promise of trying to help others. So learn from my life if not for helping yourself, help someone you know.

Time and life is something that can go by so quickly and before long it is a year or 5 years later, so it is important that you make the most out of it. To be cliche and all, it really can be taken away at any time. I know I am cherishing everyday I have; as I know age, time and life are all a privilege.

Always remember:

“Life always offers you a second chance… it is called Tomorrow!”

Posted by: Talya AT 01:36 pm   |  Permalink   |  0 Comments  |  Email
Saturday, March 04 2017

A year ago I was in hospital in Sydney recovering from major surgery, when some 6 weeks later I was being discharged and ready to head home. It was a 8 hour trip home and my shoes went missing, so I only had my black slippers and I had hoped we weren't stopping anywhere.

Turns out we stopped at not one but two RSL clubs for lunch, the first was full so we drove until we got to Karuah RSL club... so it was embarrassing! My uncle that day drove 16 hours to come and get me and bring me home, what a legend!


So embarrassing!

As I was preparing to be discharged I got the phone call to say that my little nephew had been born. His poor mum had such a long labour with him and I was relieved when the news came that both mum and bub were safe and healthy. I arranged to stop in on the way home to see my nephew and meet him for the very first time.


Our first time meeting

I was the first of his many aunts and uncles to meet him and I got a cuddle with him. He was absolutley precious. I felt a special bond with him that day that I could have sworn he smiled at me.

Over the course of the past year, I got to have many more cuddles with him. Each time he smiled at me and each time my heart felt like it was breaking, as I just didn't know how many more hugs I would get or if I would get to see any of his milestones. I cherished every minute I did have with him.

    
The keepsake blanket and teddy [LEFT] | Easter 2016, I was having chemo [RIGHT]

   
First weekend sleeping over at my new house

So when his first birthday was approaching, I was nagging his parents back in December with "have you thought of a theme yet", I was met with "His birthday is still 3 months away yet, we have plenty of time".

But I didn't know if I did.

I worried about missing his birthday or if I suddenly got too ill and was unable to make the day or if I would even be alive for his birthday... it is all very unsure at times.

When you are living with terminal illness, everyday you do wake up is a surprise, so I have been so determined to make sure I am prepared and not leaving anything unfinished.... so for me I needed to feel safe in that the invites were designed and printed and that I had contributed to the day.

So January came around and I was asked to design the invitations and that it was a construction theme. Well, boy did I have fun! I wanted it to be fun yet sophisticated but not too cheesy. I wanted to add a photo of him smiling, his smile and laugh is infectious and it just makes you feel so happy.

I also designed some other wares for the party (various signs and what not).

Being involved in the planning of the birthday and contributing meant a huge deal to me. It is my fear that I will die and be forgotten or that Leo would grow up and not remember me. I cry tears of despair and frustration often, about the fact that I would miss so much of seeing him grow up. It's not just him but also my siblings that I am upset about missing out on things, it is missing out on everything and missing major milestones like weddings, graduations or first child....

So I had hoped that looking back on the day Leo could be told "Your Aunt Talya designed your invitations" and that he would remember from photos that I was a part of that day.


His invitations and food toppers/toothpicks I designed

Don't get me wrong, I'm not setting out to make his first birthday all about me, but just sharing how I feel facing terminal illness and participating in milestones knowing the ones I will miss. Maybe documenting how I feel might help someone else who is facing a similar situation to know they aren't alone in their feelings.

On the day:

We arrived around 10am, I was a little late as my stoma that day decided it was going to misbehave and leak.

I was really impressed with how authentic the setting out of the birthday looked - true to a construction themed birthday.


Authentic construction signs

There were construction signs and barriers, there was a wheelbarrow for the gifts with a sign I made that said "dump your gifts here", there was a table with a sign alerting people to a hard hat for people to sign as a keepsake momento of his first birthday, there was a lovingly made (bu his mum) construction cake which he devoured and loved, and he was even wearing a kids sized fluro work shirt too!

   
LEFT: The wheelbarrow before | RIGHT: The wheelbarrow with presents

 
Brownies with DIG IN toppers I made too

     
He loved the cake! There was cake everywhere!

One of my memories of the day was when Leo stood and danced and I saw for the first time him taking steps. I won't forget how much fun he had with the cake, he even was lucky enough to have 2 cakes (one was a cake smash, a family tradition) and there was cake everywhere.

   
LEFT: The hardhat to sign as a keepsake and the cake with the cake smash cake | RIGHT: The cake close up

His gift:

I struggled for months thinking of a gift for his first birthday, knowing full well that he would get a lot of toys, I felt it needed to be something that was unique and precious.

I decided on getting him a star, it is in his constellation (Pices) and it is meant to be able to be seen from his house. I named the star "Sempiterno Leo" which translates to "Leo Everlasting" in Latin. I wanted his gift to be something he could always feel a connection with me when he saw the star, especially as I love star gazing and astronomy.

Besides, how many 1 year olds can say they have their own star!


Leo, you hold a very special place in my heart

I am trying my best this year to really live  and make the most out of each day I am given as I just don't know if it'll be my last.

Leo, thank you for the wonderful year of smiles and memories. I am so proud to be your Aunt and I know that you have a whole tribe of people here to support you and protect you through life. No matter what throughout your life always know how much you are loved, how important you are to so many people and that you are never alone. Know I love you a lot and will always be looking out for you.

To his parents Max and Tahli, Thank you for really letting me be involved in his life and for helping with his birthday. It truly meant so much to me and helped with the guilt I was feeling for missing out on future milestones in his life. You have raised an incredibly bubbly and gorgeous son and I am proud of how great of parents you are to him. He is the most happiest baby I have ever seen and I am so happy he came into our lives. Never doubt yourselves, you are doing great. 

Posted by: Talya AT 06:30 am   |  Permalink   |  0 Comments  |  Email
Wednesday, September 21 2016

This is not a sponsored post, we purchased the car using finance through the car yard

When I entered palliative care they asked me what would make my life more comfortable or aid me in living a better quality of life.

On this list was:
to have a wheelchair to help me go for walks or to even go shopping; 
to not be in pain, or feel like I am just existing;
to have a reclining chair as often my feet were numb or swollen from fluid retention especially in Summer; 
to get a pet to help keep me company of a day so I didn't feel so alone; 
to get a new car so that I could be more comfortable when in the car, but also to be easier to get the wheelchair in/out of the car; 
to win the lotto so I could live debt free, fulfill my bucket list to travel but to also feel less guilty about not having any life insurance to leave for Russ so he could afford time off after I died to grieve.

Of course only the pain management and wheelchair were something they could help me with from the above list.

However, I knew a car that was reliable, comfortable, easier to get in or out of and that fits the wheelchair was something of a priority for us and I knew it could make the world of difference to my ability to get out and about.


Out and about Port Macquarie July 2016

Our need for a new car:
Way back in 2009 when I was 18, I purchased my first car! While I'd had other cars before this one such as my beloved '89 Toyota Corolla, a Hyundai Sonata and a Hyundai excel (all cars that were around my age or older than me)- this was the first car that I chose, and was my first big adult purchase (with the help of Russ and finance). 

Off I went to the car yard and found this beautiful 4 year old Ford that looked and drove like an XR6 (without the price tag), it was $20k and it was so fast! I felt so sexy when I drove it and I liked the compliments I got too. I loved the colour of the car too it was this blue with sparkles and a purple hint.


We used the car as mine and Russ' wedding car.

It was a nice car..... until things started going wrong.

A year later I had realised it was probably THE biggest regret of my life!

This car was incredibly low, like so low that it scrapes on every bump and you feel it, I couldn't even drive it down/up my driveway at every previous address over the last 8 years as it scraped the bottom of the car and I mean that horrible-cringe-worthy-type-of-grind it sounded so bad.

PLUS the fact that you can't drive over 100km/h or at the 1 hour mark as you had to pull over for 15mins turn the car off and wait for it to cool down... basically the car is driving on 4 out of 6 cylinders and told by several mechanics that it was an expensive things to repair and I didn't have thousands to just spend on a car not worth $1k. The car wasn't reliable, it wasn't safe and we needed a new car - but we couldn't afford it.

Back in 2012 we tried to upgrade to a Hyundai ix35 as it was higher off the ground and had sat Nav, Bluetooth etc. but we weren't in a good financial position to get a new car and our ford wasn't worth what we hoped or needed for a trade in. 

So we kept waiting until we were in a better financial position which meant reducing our debt, working on our savings and hopefully getting our home loan.

Our existing car I haven't been able to drive for years as the steering wheel was low it sat on my belly which meant every time I went over a bump it was quite painful.... actually anytime I went over a bump it hurt so much. I no longer enjoyed driving and it became a chore, I would always ask Russ to drive if he were able to as I would be in tears most of the time. The car also was so low and was getting harder for me to get in and out; it was also hard to get the wheelchair in/out too, as you had to bend down low and it was getting too strenuous on Russell's back.

☟☟☟☟☟☟

Fast forward to August 2016, we were getting ready to move into our new house and we went to the car yard to look at their i30 and i40s all the small cars for Russ to drive to and from work. Our car was no longer reliable and I was worried about Russ breaking down on the way to work, so something that gave us confidence in getting Russ to work safely was a must, as well as a second car could be handy so I wasn't stranded at home in case I needed to get to the shops or to doctors/hospitals.

We told the car yard how ideally we would love an ix35 but they were no longer manufactured and the replacing models "Tuscan" were way, way, way out of our price range - so we knew we could at least afford the smaller i30 or i40.

Finding the perfect ix35:
Then the car yard mentioned a near new Hyundai ix35 that had only done 17,500kms and was 1 year old. It was owned by an older couple who struggled with the bigger car and were trading it in for the smaller car. They hadn't released the car yet on the market and we were the first ones interested so we put down a deposit. 

This was our one chance for finding a near new ix35 without the price (of a brand new model), so we were SO excited. Hardest part was keeping the secret until we got our keys.

We have debt to our eyeballs but we feel deep down that this truly is the best decision for us. A car that will assist me in getting out and about more comfortably and easily is so exciting!

I drove the car home, I haven't driven a car in over a year.... I did almost blow the car up! No, I am serious.... never making that mistake again!

Keep your eyes out for the future adventures that await! I am actually rather excited now for my future, despite drowning in debt I do hope we can manage. It makes me exciting thinking of all the fun and adventures ahead.

We can't wait to see what adventures unfold or the conversations this car will bear witness too.

Tell me in the comments below what the most memorable car you owned?

Posted by: Talya AT 10:40 am   |  Permalink   |  0 Comments  |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  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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