Saturday, October 27 2018
This is not a paid advert or collaboration, just me finding a great deal to pass on.
I have tried all year since reading the Barefoot Investor to find savings where I could through reviewing our bills and that with other providers and even had power panels installed through an interest free payment offer.
One of the bills that has been bugging me, is my pet insurance for Dusty, I know many think it is a waste of money to insure your pet but it is something that could help save big costs. With Dusty's breed of cat, we were recommended by a vet nurse to get insurance and go through Pet Plan.
We signed up a policy when he came to live with us going on 2 years ago to this date and at the time the plan was great and affordable at $36 roughtly a month. But once the 12 months were up the policy jumped up, and then up again and now is sitting around the $63 a month, almost doubling and I am no longer feeling confident with our policy. We haven't needed to use it yet but it was a large cost that had doubled for almost no reason.
So I was on Kogan the other night looking for a gift for Russ for Xmas, when I saw an advert for pet insurance and was curious. I was intrigued by the first month free, but also that the plans looked similar to what I was paying currently with Petplan but at a much lower rate.
I signed up and emailed to cancel my petplan and pray that Dusty doesn't get sick and needs a vet, but at least if he does we have cover.
Best of all, it is now only $39 roughly a month instead of $63 and to our budget and pocket that is a big saving!
I am interested in learning more about their mobile and internet plans, 2 years until our contracts are up but never too early to research options.
That is our power reduced, our pet insurance, our car insurance and our home and contents insurances this year, I think I have done well to make a little savings in each policy.
I always feel productive when I have done some adulting, Russ is even happier if it comes in under budget. Or when Xmas comes early...
Oh and as for Russell's Xmas present (the whole reason I was on Kogan to begin with), I ended up finding it on a different site for $30 cheaper, it arrived on his day off and he opened it and started setting up before I had realised, so now he has his Xmas gift and he loved it. It was a pokemon go lego like (mega construx) and was a big gyuarados (the evolved form of Magicarp) so Russ has been happy. Found it on ToyDeals.com.au for $30 plus post, but still was cheaper than most sites, quick to arrive too (couple of days too). also not a paid mention, just a damn good find!
Crazy that Christmas is so close, it also means that the Share the dignity #itsinthebag promotion is on soon too, better get started on that myself. I am not anywhere near organised this year!
Disclaimer: I was not paid or asked to write about this, I found and paid for this plan myself and thought it was a great buy to pass on to you, always read the PDS to make sure the product is right for you.
Monday, October 15 2018
I posted on social media the other night (well, last Thursday) a teasing photo of a delcicious hearty stew I had brewing in the Slow Cooker, it sparked so many asking for the recipe, so here is the stew recipe and story behind it.
Please note: I have not been paid by any of the companies I mention when it comes to ingredients I use, you can always opt for your own preferred company of choice, but this is my stew and how I have made it for over a decade.
Story behind the Stew:
I first learned about this stew when I was staying over at a friends house in year 12 and we went to spend the day at her Grandmother's house and she said "girls since you're leaving home soon I better share an easy stew recipe". So we cooked it and she talked us through it and she gave me a copy, I started experimenting making the stew and adding in different ingredients and was determined to make it my own.
It is one of those stews that are perfect for wintery cold nights or if it is raining outside and will be rainy days ahead it is nice to just pop the stew on to cook in the slow cooker and wait for it to cook, meanwhile enjoying the smells as they fill your house for the next 8 hours.
I also find that we can get a few days worth of meals out of this, we put as much as we can into chinese containers and pop them in the fridge and freezer, but one chinese container is one bowl full for one person.
But don't ask me the calorie intake, I have no idea but it is just delicious, and Russ loves it too! You'll want seconds it is so good!
You will need:
Ingredients: (I get all my ingredients from my local Woolworths)
☞1 x large bbq chicken [ or you can cook your own chicken, ] for time management and ease I use a BBQ chicken (it is the most costly component), sometimes you can find cold chickens which is just as good to use and cheaper too
I think that is all the ingredients, now for the making of it
Step 1. Locate your slow cooker and plug in to power, add 1 cup of water and turn to high
Step 2. Wash your fresh vegetables like sweet potato, carrot, potatoes just wash but keep skin on (when it is ready the skin just easily fall off), if you're adding in fresh brocolli or brocollini or cauliflower wash these too.
Step 3. Add in the cans of Campbell's condensed cream of chicken and corn or cream of chick soup cans into the slow cooker.
Step 4. Add in the canned vegetables.
Step 5. Add in the Continental cup a soup creamy garden vegetable and creamy chicken and corn with croutons sachets.
Step 6. Mix all the soup together
Step 7. Next add in the BBQ chicken by tearing off small bite size pieces but not adding in the skin, bones or stuffing
Step 8. Mix the chicken and soup mixes together
Step 9. Add in the shell pasta and mix it all together, add more if you think it needs more, but not too much more.
Step 10. Add in the pieces of cut chunky fresh carrots, sweet potato and potato. Stir it all together.
Step 11. Add in the frozen vegetables and stir it all together.
Step 12. Leave on high for 2 hours, check roughly hourly and stir, it can be messy as it will rise and thicken as it cooks.
Step 13. After 2 hours turn to low for 6-8 hours and check hourly and stir
Step 14. Leave it on low for another couple of hours if you think it needs longer.
IF DISCARDING STEP 14, turn it off and serve.
Step 15. ENJOY your delicious thick stew
* We love to buy the packs of dinner rolls from the woolworths bakery and pop in the oven so they are hot and fresh for when we serve up our dinner, we cut them along the tops and we stuff spoonfulls of stew in there and then eat it like that. We also use bread not toasted but buttered to scoop up the soup and it just is delicious.
Step 16. Fill up containers, we use takeaway chinese containers and pack these to the brim and pop 3/4 in the fridge and 1/4 in the freezer. We find with the 2 of us we can eat this for lunch and dinner for a few days using the fridge containers, often Russ goes back for a second bowl.
I have made this when I have had my kid siblings come and stay over the years or my MIL and they have loved the stew. It is so easy to make and all the effort is in the preparation and the slow cooker does the hard part. I would cook this if it were cold and miserable weather, or if it is raining, nothing says snug as a bug as a hearty winter stew whilist nestled under blankets enjoying a movie.
We made this Thursday night, and I say we as I sat and supervised Russ and told him what to do as I wasn't up for standing in the kitchen for even half an hour or less (pain). But Russ loves when "we" make stuff together, he loves learning how to cook some of my meals that he loves.
We started cooking this at 7pm Thursday night and was cooking when we went to bed, and the aroma wafting through the house had my tummy rumbling all night. We would check it every hour and then we turned it off and put it in chinese containers and went back to bed. So it was exciting to wake Friday and have stew for lunch, and dinner and we still have a couple of bowls left.
But I have to be careful with my stoma, luckily all the veggies and chicken break down so soft they just fall apart and then i try to take the skin off to avoid a blockage, but as I have had so much and it has caused my output to be rather thick and caused a blockage, so just keep that in mind if you're an ostomate prone to blockages that it does make things thick.... but it is so delicious!
Our Slow Cooker:
This is an adorable story, we got our slow cooker the first Christmas we were together (2009). We spent Xmas Eve with Russ' family who were up from Melbourne as we planned on spending the next day with my dad and family. So we unwrapped our gifts and our joint gift from Russ' family was a George Foreman slow cooker. I was so excited as I had been saying to Russ I wished we had one as I was missing being able to cook my stew.
So the next day we went to Xmas at my dad's and he handed us a joint Xmas present which was a slow cooker! we laughed as what are the odds of getting 2 slow cookers! I was really appreciative and thanked my dad but Russ' mum made a comment how she beat them to it and we had one already, so dad took it back to the store as it was unopened ( we already opened the one the night before as I was keen to make pinterest desserts) and he bought us something else.
I remember one Xmas dad wanted an electric sander so he bought one for mum so she could use it, and that same Xmas mum bought dad an electric sander so she could use it. It still makes me smile even though I was 10, it made me laugh that Xmas with the slow cooker remembering the electric sander gifts.
So we have been enjoying our slow cooker for quite some years now, I used to use it more when I could easily jump in the car and go get groceries and was more independant, but I am wanting to make slow cooked lamb shanks for Russ next winter.... but I have been trying to convince my nan to get a slow cooker as she would love it, pop the meal on in the morning and smell it cook all day.
Tell me, what is the favourite slow cooker recipe of yours? Mine is definitely my hearty stew.
If you do manage to make this please let me know how you went!
Thursday, October 04 2018
Trigger warning: Talks of mental health, vulnerability
You: How are you?
You: Ok. What's up for today?
- - - - - - - - - - - - - - - - - - -
I'm sure you would agree that this is, the normal greeting and conversation you would have with most people throughout your day. What purpose does it serve when it is offered by rote, and from both parties?
There are times when the question might be just a little different and if you stop to think about your response you can create change. Observe.
Y: How are you?
Y: Hmm... Do you want to talk?
- - - - - - - - - - - - - - - - - - -
Hi everyone this is Russell, the Ostomistic Husband.
Recently, I had a bit of a breakdown at work. I got there to work okay, but then things just got just a bit too much for me. Luckily, we were made aware that there is easy access to a counselling service available to staff, through our EAP, so I had to sort of bite down on my pride and ask for help.... finally!
This was hard, but the hardest part of the day came next.
Next, was the call to the counselling service which led to even more of a breakdown, so obviously there was more to it than just a momentary lapse in willpower. Just talking to them about why I was feeling so teary led to finding I was truly angry on the inside, and I realised it was about time that I started opening up for real and sharing these feelings with someone before they became more harmful…. If not only to myself but to others too, and its the least I want.
The tears were because I was really worried about Talya’s declining health; your best friend dying before your eyes, is enough to jerk a tear from even the most hardened macho jerk. I'd gotten to a point where I had to really start opening myself up to someone and letting them in.
That hurt me because Talya is the most supportive and talkative person I know, yet, I was not letting her in. I know she only wants to get inside my mind further and help me work through this, but I think that I can’t talk to her about how I feel because that would not be me being strong for her. I also know that Talya doesn’t tell me how much pain she’s in all the time because that’s her being strong for me.
I am so tired of us pushing against each other when we really should be pulling each other closer, so we can rely on each other‘s strength to be able to help us in our time of perceived weakness. The time is now.
The anger itself, was mostly a due to the fact that I can't control everything. I was finding that the more stressed I was getting the more time I'd have to take off work. Missing out on income didn’t help things, we would have to tighten the purse-strings at home for the following weeks as only small paychecks came in. That made things even more stressful so on spiralled everything down towards chaos and I thought, "Enough is enough! I have to man up. I have to deal with what’s going on inside, uncomfortable as it is I must move forward".
I have autism, so it’s hard for me to talk about feelings that I don't fully understand. But, I have to find a way of communicating my internal workings to someone so that they might be able to give me some additional tools to better deal with those feelings. I don’t generally feel emotions all the time, and when I do get them they are usually overwhelming and too powerful and it scares me.
Unlike most people, I didn't get to learn how to deal with those feelings, in their varying degrees, when I was younger. So when I get some hot emotion it’s just like a huge slap in the face and I don’t know what to do. Actually I do know what to do; I do what most people in my position do, and that is retreat.
So usually I retreat inside myself rather than looking for outside help. I think it best to stop talking, I just want to be alone, I just want to suppress those feelings and hope that in time they go away. I need to learn to recognise there are times that I can self heal and there are times that I require external forces to help me to heal.
What I'd been doing up to now was no longer working, so I had to make a change, it was only inevitable. I think that having this counselling service available to me is a lifeline that has been there for me for years, had I just opened my eyes and pride to the service. I know it is going to be a huge benefit to me. I may have the secrets of the universe poured into my open and receptive mind or I may only learn relaxation techniques to help deal with my grief, not just loss but the anticipatory grief too.
Either way I will be in a better place than before simply because I answered a question posed to me in simple conversation honestly, not automatically.
So basically my message here is if you need help ask for it. If you can’t ask the people that are closest to you then for the sake of your sanity and health ask somebody else.
Just do yourself a favour and talk to someone, even if you do all the talking and you realise what you need to do without them saying a word. The fact that they’re there means you are not alone and that you’ve opened up to them means you are able to start healing.
I just want all the blokes out there who are carers to someone who is chronically or terminally unwell, that I see you, that I am you and that you are not alone in this brother. We are the forgotten brotherhood in this story but if anything we should rely on each other.
Let’s remove the stigma that it isn’t the blokey thing to speak up about our feelings, but we shouldn’t feel ashamed for when we do cry, it is better than bottling it all in and an avalanche of problems emerging.
Fellas, we need to be the best parts of ourselves so we can be the champions our women need us to be so lets make a pact that we will not go through this alone anymore. Yes, it isn’t us who are sick but we are the ones who are here holding their hand when they are crying, comforting them in their times of need, but we keep neglecting that this is all taking a toll on us too.
The pain at the thought of losing my beautiful wife is all to hard and real but I know I am not the only partner or husband out there who is feeling this anger and loss.
How about I start up a group called "The Ostomistic Husband brotherhood", where it is a fb group you’re welcome to join and share in the times you are struggling and need a little clarity or just need someone who gets it to know you aren’t alone, I won't be available to offer advice or act as a counsellor but should you need somehwere to ask for questions or need a safe space to open up, this will be it.
If you would find this group valuable comment yes under this blog. It is a safe space, men or partners or carers of someone ill or terminal.
I know there isn’t much support for the men and the carers but lets be in that change tonight.
It is only one day at a time that is given, but lets use that day to try and be the change we wish to see in the world.
Please don’t forget you’re not alone, I am you, I see you, I feel you.
About the Author:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au.
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.
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.
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:
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!
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.
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.
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.
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.....
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 enter the competion:
You'll love their feeds!
✰Please Visit and like/follow the following businesses:
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.
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:
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!
✰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!
✰1 x Ultimate Body Goodness Care Set from Sugorma
✰ 1 x Neck Wrap Heat or Cold in Boho Feathers - Chatterbox City
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.
✰ 1 x 'Hey Beautiful' Love Letter - TLL collective
♥ A reminder that YOU are Bright, Brilliant, Beautiful and Brave and most of all YOU are loved.
✰ 1 x 'More than words' book by Sophie Guidolin
Each page within the book details a beautifully hand-scripted quote to lift your spirits, change your mood and focus your goals.
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.
✰ 1 x Pink and mint green car diffuser 'french vanilla' - Salty Fox Co
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.
✰ 1 x 2 pack of Notebooks and a set of Greeting Cards - The Scenic Route
♥ 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.
♥ 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
Relax and unwind with our mini pamper pack. Including:
Talk about an epic prize pack to win!!!
Are you excited? I know I am!!!
Wednesday, April 18 2018
Stoma Nurses are the heroes of the ostomy community, well I know I wouldn't have made the last 5 years without my wonderful nurse by my side. So it was why it was an absolute honour for me to have been asked by the WOCN society to contribute to a tribute video they were collating for WOCN week, to say thanks for our nurses.
It was even more of an honour as it was to mark 50 years of WOCN contribution, and I felt in someway that it was a way for me to leave a mark in the world to say thanks to my Nurse and all the nurses out there. I am big on saying thanks and ensuring that I say thanks for those I love or those who have made an impact on my life.
This week 15th-21st April, is the WOCN appreciation week. WOCN stands for Wound Ostomy Continence Nursing, in Australia this is a Stoma Nurse who is also a Stoma and Continence Nurse.
If you wanted to see the tribute video, here it is. If it doesn't load below the link is here.
Thank you to all of the nurses for all that they do to help ostomates navigate life with an ostomy more smoothly. Most importantly, thank you for having our backs.
Congratulations to the WOCN society on celebrating 50 years of service! And thank you for everything!
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.
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!
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!
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.
Let me start by sharing (an ironic) quote from the episode:
The irony is that they could have shown more compassion surrounding how they approached the idea and livelihood with an ostomy.
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.
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:
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!
✰Introducing Zoey Wright @zoeywrightx - Pro Fitness Model:
✰Introducing Laura Zapulla @stomalicious - Ostomy travel blogger:
✰Introducing Sam Abarca @aussie_ostomate - RN with an ostomy and training to be a STN too:
✰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!"
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:
✰Introducing Dana Marie Arnold @lovedanamarie - country music singer/songwriter, recently married:
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.
Wednesday, February 07 2018
Poor Russ has been a little stressed and stretched these past couple of weeks. Poor guy is feeling buggered, which is no wonder with all the excitement going on here at our humble abode.
I joked to him yesterday, that it looks like he has greyed more in the past month.
Time spent with cats is never wasted:
While I spent my first night in hospital (see previous post to read), Dusty managed to somehow get outside and got into it with one of the neighbour's cats who is forever at our place tormenting Dusty.
Dusty, naturally, was only protecting his domain and his house... but while he thinks of himself as this almighty alpha (who dreams of becoming a firece lion when he is older), really just is an egotistical testosterone fuelled teenager who is all talk and can't fight.
We got a quote recently to get the "crimsafe" mesh screening on the doors as he keeps charging through the flimsy flyscreens to get outside. But at $3k, it just isn't something that we can readily organise or budget for just yet.
The night in question was rather hot, Russ didn't want to unnecessarily use the air con if he could avoid it, so he even went to all the extra measures of making a barricade using MDF ply board so that he couldn't get outside.
Yet, somehow he did.
Not only did he get outside, but he managed to get back inside climbing back over the board.
Russ found him the next morning curled up in the laundry crying and whimpering in pain, he wouldn't even let Russ touch him or anything. Russ said he was curled up on my blankets and towels in the laundry, so he might have been wanting to feel comforted by me since I wasn't home, but Russ said he spent most of the time in there sleeping while I was away... Dusty doesn't cope well when I go to hospital.
So Russ only realised Dusty had gotten outside because he was filthy and he had to give him a bath, but he also noticed he had scratches and bite marks on his back/sides.
So Russ wrapped him up in one of my towels and put him back in the laundry and headed off to work.
This was the day where I nearly died, had my seizures and was a bit of a worry.
I remember around 7.30pm Russ said now that he knew I was okay, he needed to get home to Dusty as he was worried about him too.
So fast forward a few days and Dusty started eating again, Russ said he was a bit depressed which could have been from needing and missing me but also because he was in pain and he went off his food but started eating again a couple of days later. Then gradually over the days to follow he would slowly get back to his old self.
I came home from hospital last Friday, I got out of the car and hadn't made it to the front door yet when Dusty was at the front door meowing as if he was excited to see me home. Russ said that was the happiest he has seen him in that time.
Every night since his first night with us, he always would sleep in our bed cuddled up to me of a night. So when I am not home and in hospital he doesn't come in our room to sleep and usually sleeps on a lounge or on a cat bed he has hidden under the coffee table. So he slept there and in the laundry.
But my first night back home he jumped up on the bed and cuddled up to me and was purring so much, it really made me feel a lot happier to know that he was feeling safe and well again.
Since then he has been acting more and more like his usual self, today he ran around chasing flies or ghosts, he even jumped up to the top window in the dining room (where he looks out over his kingdom) and has been enjoying having me home.
He hasn't let me out of his sight and even will lay at the door looking like a Sphynx guarding the room, being home with Russ and Dusty certainly has been the best medicine for me, so hoping it is the same for him with me being home. But it broke my heart knowing that Dusty needed me but I wasn't here to console and comfort him, I feel guilty.
Dusty's visit to the vet's today:
When I cuddled him the first night I was home I noticed he had a couple of bumps along his back near his spine, I was worried and concerned, by Monday these had grown bigger. So I called the vet and asked them for a consult today (Russ had the day off).
Russ and Dusty trotted off to the vet today and he said Dusty had a temp and that the bumps were abscesses because of the other cat he fought with likely had something on it's claw or teeth.
He has a course of antibiotics to take twice a day and to see if the infection and abscesses clear up, if not he will need to have surgery to remove and drain these. But the vet said that they look close to bursting any day now, so fingers crossed!
So it's been a pretty big and exhausting couple of weeks here at our household, just hoping that Dusty can quickly understand he isn't an almighty Lion and he is just a precious little cuddly bear. Hoping this phase passes soon, because we can't quite fit $3k just for new thicker screened doors into our budget to appease his testosterone alpha male ego character he has going lately.... I thought having him desexed he wouldn't be so, well, male?
I am proud that he loves our house enough to feel he has to protect it, but he is just far too precious and is really just a soft cuddly pretty boy!
But the best part of being home is feeling like he needs me and being spoiled with all of his cuddles. I am just grateful he is okay and nothing too major, but I don't know what I would do if anything happened to him.
Tell me, did your cat ever settle down as he got older?
Or any old wive's tales you know of that have cat's leaving your property alone?
P.S Did you know Dusty shares his own antics on Instagram and fb search @Fabmewlous_Dusty to follow
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.
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.
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.
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!
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!
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:
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:
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.
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.
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.
That is a fight for another day.
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.
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?
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 :
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.
Letter To My 21-Year-Old Self:
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.
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!
Friday, January 12 2018
NB: This post contains talk about poop
You always remember your first time doing a milestone. Well today I am celebrating the first time I showered without my bag on and boy I felt like a rockstar afterwards as though doing something mundane but great.... If you know what I mean.
There have been times where I have had a really bad bag leak, I'm not talking about a little seepage from under the wafer, I am talking a leak of cataclysmic proportions like a volcanic erruption or a poosplosion (the latter is real, trust me). My clothes, my linen and my mattress protector needed to be washed and soaked with napisan.
Then there was me, not only were the clothes I was wearing drenched, but so was I.
You know when you go to the beach once but for the next month you find sand everywhere and it gets into every nook and cranny? Well, that is how it is for me when I have a bag leak of epic proportions, except switch out sand for poo and you've got yourself a winner.
So in times of a cataclysmic bag leak it is best to just get in the shower and be hosed off and clean up the mess later.
I have always been hesitant though at jumping into the shower without a bag on, normally I would clean my self up the best that I could while sitting on the toilet and once a new bag is on I would then jump into the shower. Which often meant changing my bag afterwards.
I know what you're thinking, but WHHHHHHYYYYYY?
Well, it was simple....
I was scared.
I have never, in 5 years, showered without a bag on.
I know many do and many have many times, but I was always hesitant.
One of my fears, with my first stoma (May 2013-feb 2016), was because essentially your bowel is stitched to the outside of your abdomen I was worried about the run off from my shower gel or shampoo/conditioner would affect my stoma or cause irritations that might leave me presenting to the emergency department explaining my issue and people think I am silly for not knowing better. It really used to play on my mind.
So I never did try with my old stoma.
Then this new stoma (feb 2016 to now) is a total pain in the ass, it is retracted and sits under my skin, essentially I poop out of a belly button looking hole. So because of this I was always worried that the run off or chemicals would get inside into my small bowel and cause issues, because, well, soap and shampoo/conditioner shouldn't naturally be in your small bowel... so I worried it was just a recipe for disaster.
But with both stomas I was also worried about the mess side of things, like what if it were active during my shower, what if it were active while I was drying myself and would have to shower again and the circle would go on, and on, and on. I also can't bend over or get down to clean, so I was worried about leaving another chore for Russ to do, so I feel enough a burden when my bag leaks this badly and he has to help clean me up.
So back to my story.
I was in bed asleep all day and woke around 6pm to find my bag leaked, I called for Russ to help me as it was too much for me to manage to clean on my own.
Each time it is this bad he always says "just jump in the shower and hose it off", but every time I say "uhh, no it's okay I will figure it out".
Except yesterday I really had no energy and said "what the heck".
I took my bag off and disposed of it, that way I could clean my stomach better and easier.
I had my first shower without my bag on, it was nice to have water running directly on my belly as opposed to wet towelling and washers. It was nice. I have a handheld shower head which has different notches you can turn it to for different settings, so I put on the more gentle of the settings and didn't hurt.
I was worried about the repurcussions of an active stoma.... but to my surprise there wasn't any disasters. My stoma had probably expelled everything it had stored in there (daily I have bowel blockages due to tumour issues) so sometimes it works all of a sudden and leads to poosplosions like this.
Now I know next time when I should just jump in the shower and hose off that it will be okay, that I won't die because my soap chemicals burned an ulcer through my small bowel or that showering with my bag off won't damage my skin if anything it helped it.
Thankfully it isn't everyday that I wake up with a leak like this, some days it is more managable, but it is uncommon to have a day where I don't wake with a leak. There have been a couple of times when a leak like this happened during the day when I was out (once at a wedding and once at a restaurant), so in those moments I can't just hose myself off.
Have you tried showering without your bag? Were there worries you had too?
I know my worries might have seemed over the top, but I live with bad anxiety and that anxiety rules a large part of my life and very quickly my mind can esculate a situation.
I am used to bag leaks now, but it took a while to not be flustered. At first I would cry every time my stoma leaked and I would be so flustured and overwhelmed, so much that my husband would step in and help me. He always was the calm one. I used to play songs or music when I did a bag change to help distract me. When I got my new stoma and it leaked almost hourly I basically had an ipad set up and would watch something funny to distract me, the steps involved in doing a bag change took almost an hour each time and it just helped the time to pass by being distracted.
Now when it leaks, I am just so focussed on getting a bag back on as quick as I can because sometimes it can take a long time to stop being active long enough to whack the bag on.
If you have a frequent leaking stoma, welcome to the club.
But be sure to see your stoma nurse about why you have a leak and what you can do to prevent it, I know not all leaks can be prevented but sometimes there could be a new or better product for you to try.
With my first stoma I was have regular leaks every few days, I realised that my output was getting under my base plate, so my STN gave me rings/seals to try and it really helped improve the longevity of my bags and I was able to go 7-10 days between changes and my skin was still good... I do miss my old stoma, and it is important to note what worked for me in that situation might not work the same for you.
Of course there isn't anything to be done about this current stoma, and it could be the same for you, but sometimes your nurse or surgeon can help.
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.
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:
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:
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!
#3. To say No more:
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:
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 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 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:
#8. Write a blog post a week:
#9. Write a journal:
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 guess this would come under self care and taking time for my needs too.
#11. Go Swimming:
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:
#13. Have a holiday:
#14. Explore the Coast:
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.
#15. Renew our vows:
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:
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:
#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:
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:
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:
#2. Knowing the meals or menu ahead of time:
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:
#4. Ensure your guests have easy access to items:
#5. Have plenty of towels available:
#6. Have empty and clean bins near all toilets:
#8. It's okay to need 'me time' and step away for a breather
#9. Have a fan or cooling option available, especially if it is summer
bonus tip #11. Have plenty for your guests to do
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.
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
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.
Saturday, November 11 2017
Sometimes we think that society has advanced, but then there are times that remind you that the world around us is a cruel, judgemental place filled with so much hate and anger.
I think it is time that people stopped shaming people with disabilities, especially those with "invisible" disabilities. Unfortunately not all disabilities are visible and we should be open minded and not fast to judge and be cruel.
I saw several posts online today about how a young student had flyers and posters stuck all over her car calling her lazy for parking in a disabled parking space, or that she isn't actually disabled.
This girl is undergoing treatment for cancer including radiation, but these vigilantes shamed her and made her feel guilty about her situation.
As a young female who has cancer, I know how hard it were having chemotherapy and struggling with energy to go to the shops and do mundane things like going to the bathroom.
Due to my tumours, one is the size of a watermelon and is attached to my stomach, small bowel, both kidneys, my ribs, my liver and presses on my back, and also compresses the nerves and blood supply to my stomach, bowel and my legs too.
I have a disabled parking permit because I am unable to walk more than a few metres at the time before needing to sit and rest as the pain is too much and the pressure along with the numb legs isn't pleasant.
So I have a wheelchair and I am not ashamed of it.
My wheelchair has given my life and ability to enjoy and love life back.
But people, even family, recently said that they thought I had a wheelchair because I am lazy.
Yes I am overweight, but that isn't why I need a wheelchair.
I need a wheelchair because I have a watermelon fucking sized tumour slowly killing me through strangulation.
But hey I am just lazy arent I?
I know this issue of disability shaming is happening all too often, just people think they see something they need to be somewhat of a hero and stand up for "what's right", which they feel is belittling someone to feel less than about having a disability because it isn't a perceived acceptable disability.
But not all disabilities are visible.
AND a disability isn't just someone using a wheelchair.
If you look up the term of disability it is: a physical or mental condition that limits a person's movements, senses, or activities. It doesn't say it is limiting to those in a wheelchair.
You don't know what is going on inside another person's body, you don't know the struggles that person is facing, you don't know the shit they have had to put up with that day already due to their disability.
So before you think you HAVE to say something, remember the acronym THINK:
It might feel like your responsibility to call out every person you think is abusing the system, I get it, but while it helps you and your ego to feel better, you are destroying someone else's life just to make yourself feel better. Probably think you're helping to defend people, but you are just making people with an invisible disability to shy back further into their corner feeling shame for not being as able bodied as you.
In your actions just stop and think.... is this necessary? What will it achieve?
But you want to know what my doctor says to me everytime I break down crying in his office over someone disability shaming me?
He says: "Talya, if I didn't think you deserved it I wouldn't have signed off on it.... fuck the haters", so you can see why I love my GP so much as he has my back. A doctor wouldn't just hand out a permit if you didn't deserve it.
Yes, there are people who abuse the system, but it isn't your place to think you are calling someone out.
One incident last year: Russ and I were in the car and parking in the CBD, some lady stopped and argued with us for 20 minutes over if we could park there all because my husband had P plates on his car she wouldn't believe that the permit was ours because we were young. Young people have disabilities too and they come in all shapes and sizes.
Next time you want to shame someone, stop and think first.
If you feel you MUST do something to make yourself feel better, go and donate to charity or do something selfless for someone else. Making others feel good is a much better feeling than making yourself feel good for putting someone down.
There is so much anger and pain in the world already, let's not add to it hey.... be more kind to others.
The world needs more love and they say if we want to create change to start at home first.
Saturday, November 11 2017
CW: This post talks infertility, miscarriage and other heartbreak caused by having a faulty body
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.
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.
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:
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
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).
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.
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.
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.
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!
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.
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.
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.
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.
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?
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.
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.
Wednesday, October 04 2017
“Be the change you wish to see in the world”
We all know that at some point our lives will end, but what we do in our life and how we live could be a legacy that we are leaving that would continue to live on well after we have died.
It is hard at times knowing that my end is coming, given my terminal prognosis and that I am living with the knowledge that I could have 6-12months. I do know that a year ago I didn't think I would still be here, but I am. So I am making the most of every single day.
However, leaving a legacy is at the forefront of my mind.
Everyday I wonder: "will I be forgotten?"
I have so many thoughts racing through my mind every minute of the day, these are just some.
One thing that I worry though is if my life meant anything or if I mattered... it might sound like a strange thing to think about or it might sound like a self-centred narcissistic thing, but it is hard somedays wondering "why me?".
So leaving a legacy and living a life that I am truly proud of is something of importance to me
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One thing that I have known and believed since I was a teenager was that I had a purpose in life and that was: "to make a difference or to change one person's life", so I have tried to live life with this desire to help behind every action - including my blog and magazine.
I was pretty excited to have been asked by Share the Dignity to write about legacies and living a life with a purpose. This is a piece I offered up as a volunteer contribution (I was not paid or incentivised in any way), this is a charity I have been passionate about supporting for the last couple of years and one that I know how important/needed their work is.
If you would like to read my article click here. (Feel free to leave a comment if it has helped you or if you liked it)
Share the Dignity have their annual It's in the bag campaign coming up where people are asked to donate a handbag or backpack that is in good condition and fill it with items such as pads, tampons, toiletries and more. To learn more click here...
Being a Volunteer, despite being terminally ill:
Last year I did two backpacks for teenage girls and filled with items I had collected since the Xmas prior. To find out about how I put together 2 bags on a budget, click here.
I decided to sign up as a volunteer and collect the bags and deliver to the respective charities in the area. At one point I had over 300 handbags in my house. Two guest bedrooms were chock-a-block full of handbags and backpacks and there were a trail from the front door leading through the house!
It was an incredible experience and very overwhelming, only that I struggled with energy and pain and couldn't carry much so Russ stepped up for me and helped to deliver everything. Russ also helped me to check each bag for all the essentials and make sure that each bag had pads etc.
I was pretty proud of the work from our community.
Russ and I were delivering bags to a youth refuge and the owner/manager was in tears. One of the girls came out and helped Russ and I carry the bags and she said: " Thank you for doing this, you have no idea how much it means to me to know that strangers do care, that someone believes in me".
Another charity we were delivering to (was our 2nd delivery there that day as the car only fits so many bags) came running out of the charity as she had just received her bag and she hugged me and was crying and said "this were the best gift she had ever received".
I am so happy that an incredible organisation that is Share the Dignity exists, I wish I could have done more to help but I donate pads when I can to their April and August drives and the #itsinthebag. I love that Russ got involved and was a champ in helping me last year, sadly I am not in good enough health to volunteer for a second year but I am trying my best to get a bag together when I can.
I know there were times in my life where pads were a luxury and it meant going without food, it is no exaggeration at all, I am not ashamed of that point in my life I was simply trying my best, but do consider in your next grocery shop to grab a packet of pads/tampons and keep aside for the #itsinthebag campaign, even if you can't afford to do a bag but can donate pads that would be incredibly appreciated and it does make a difference.
If you were interested in volunteering for the it's in the bag campaigns click here, it truly was a hard yet rewarding experience. Or if you can't collect the bags consider offering your workplace as a collection point!
There are always opportunities all around us to help make a difference to someone else's life.
I know that even if you think it is a small act of kindness and that it wouldn't be noticed, it could in fact be a huge thing to that person and be the reason that hope is restored.
Wednesday, October 04 2017
In Early December 2015, I was 2 months into my chemo plan of weekly treatments and was rather unwell with the chemo side of things and was in hospital rather ill with an infected and dying tumour that saw me in hospital for the weeks and months to come.
It was around this time that I learned of the Share the Dignity #itsinthebag campaign, I think I saw it on TV or on Facebook, I tried to organise what I could for a bag. I didn't have much time or energy, so I did the best I could and sent Russ to the shops with a shopping list of things to get for the bag.
I wished I had of known earlier about the campaign and I would have been super organised, so I vowed the next year to start early and shop throughout the year when things were on sale and hoped to try and do at least 2 bags by being organised and nabbing great deals.
So the new year came and true to my word, I started getting organised.
To give and receive a #itsinthebag gift is something that can help improve the lives of a woman who is doing it tough. I have heard stories of how they got a handbag and it helped them to look and feel more confident/professional when going for jobs, I heard from teenagers who escaped a violent home situation and are in the foster care system and a new backpack is a luxury and having someone believe in helping them through school made them feel loved and worthy.... each of the women who receive a bag from you have their own incredible stories, and sometimes they need to be reminded of how incredible they are.
Some tips before you start your bag:
Here is how I managed to organise a bag on a budget!
Best of all I were able to organise not just 1 but 2 bags filled with items following these methods.
#1. Write it all down:
I know it might sound over the top to do things this way, but this is how I have organised present buying for years and it also means I am accountable for my purchases.
You would be surprised how many times I have purchased something more than once because I forgot about it.... even though it has been a year since my chemo finished I still have a rather frazzled brain, so lists and spreadsheets helps me to feel in control of my memory.
#2. Go through your own cupboards:
I found some hair dye boxes left over from when I dyed Russ' hair, some perfume sets I never used, some makeup that were unopened, spare toothbrushes and I also divided the contents of the container of cosmetics I received from BellaBox into two piles.
Having a chunk of things already meant I could save costs and could instead buy something else.
#3. Sales, Sales, Sales:
I start my Xmas shopping usually just after Xmas and take advantage of Boxing Day/Stocktake sales. I did this too when it came to my #itsinthebag planning and by having the best part of a year to shop and know what I was looking for, it helped me to nab some great buys at times.
I also take advantage of Click Frenzy deals, if you haven't heard of click frenzy it is this one day where sites offer crazy sales that are known for crashing the internet, it really is a clicking frenzy. I regularly scope out sites/stores like catch.com.au (formerly catch of the day), ozsale, kmart, reject shops as well as google.
I purchased a Roxy wallet that normally cost $20 for $5, so I grabbed 2. I found the eye masks (Kmart now have a range for $2) at Typo (with the help of a 50% off coupon) for $1.50, the beanie was from cotton on for 50c, as well as the notebooks. The backpacks were half price too. I got quality pretty design umbrellas on sale from Umbrellas & Parosols for around $6.95 on clearance too one was a leopard print.
Catch.com.au have 'club catch' where you receive shipping discounts as well as member only offers, sometimes there is ridiculously cheap priced offers but I find grocery store items like toiletries are really cheap to buy from here and are often a bulk buy too.
#4. Bulk buys and value for your dollar:
Say a pack of Pads were 1/2 price, it means if you purchased 2 packs that it would have cost the same as 1 pack would have, therefore doubling your price. Currently on Catch, they have a 6 pack of mesh bath sponges for $4.98 so 83c each.
Just keep an eye out in catologues or online for good special buys, there really is great value to be found if you shop around and compare.
#5. Afterpay makes bigger cost items more affordable:
I chose to organise my gifts for teenage girls, girls who are doing it tough. I knew a backpack would be great for school use as well as if they worked.
I took advantage of click frenzy sales half price or even less and grabbed 2 backpacks and put them on afterpay, which meant that I could break the repayments up over 8 weeks, which made it a little more affordable as well as not missing out on the sale.
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I really hope that these tips help you when it comes to organising your bag for the #itsinthebag campaign, just over a month before the collection period starts. Don't stress too much about how much or how little you put in, it isn't a competition and as long as you include the essentials such as Pads/Tampons, toiletries and the bag - then you are on your way to giving a woman the greatest gift this Xmas.
Last year my husband and I collected bags in our area and delivered to local charities who distributed them. This was such a rewarding experience and at one point there were over 300 bags sitting in my house!! The emotions felt when seeing each bag that had so lovingly been put together was truly incredible. I wrote about this experience here.
Everyone deserves some magic and kindness at Xmas.
Do you have friends who are doing a bag this year too? Why not arrange a date where they bring their bags and contents and you all sit around together and complete the bags. You could have wine and nibbles too, I am sure it would be a lovely and rewarding experience when shared with your best mates too!
Or if you can't put together a whole bag yourself, ask a friend if they wanted to do a bag with you and you could share the costs of creating it. She might even have a bag for you to use too! It is a perfect experience to share.
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!
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.
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.
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,
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.
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!!
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 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!
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.
Tuesday, June 13 2017
“Life is 10% of what happens to us and 90% how we react to it”
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.
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.
“Life always offers you a second chance… it is called Tomorrow!”
Wednesday, November 30 2016
When I think back to my teenage years, one thing that was a big part of my life was reading the Dolly magazine.
Not only did it come with the occasional FREEBIE, but the information you learned was second to none... and you can't forget the excitement of tearing open the sealed section as if you were some rebellious girl eager to know what was such a secret, then when you realised you turned red in the face or giggle out of embarrassment.
I started getting Dolly pretty early on, I was 9 when I got my first period and I guess it was more awkward for my parents to have to talk to me about that sort of stuff, so I was given a magazine each month.
There was some pretty helpful articles, awesome competitions, projects to get my craft freak on, as well as Dolly Doctor.
I don't know who Dolly Doctor was, but I always imagined she was the older sister I never had who was cool, collected and held your embarrasing questions under her lock and key. I was thankful to those who wrote in with their issues as I learned a lot, and a couple of times had my questions answered under a guise of course.
I liked reading the embarrassing moments, as it made me feel less awkward and less alone. I remember this one girl wrote in about her horrifying experience of when she wore white pants for the first time and was on a date at the movies when she got her period and her white pants were destroyed.
It taught me that I should keep a record of when my period was due so that I could factor in things like swimming attire, wearing shorts or skirts, or wearing white clothing.
Unfortunately my school dress was white and it was humiliating when I had an accident.
The freebies were sometimes pads and was nice having some you could try out and see what suited me as opposed to wasting money by buying different brands and types.
I remember all the helpful advice received over the years like relationship advice, how to help mend a broken friendship, how to help your acne covered skin, how to make the latest fashion trends, different ways to wear your hair and how to know when to ask for help (mental health or eating disorders etc).
I feel a little saddened for the future teens who won't be able to experience the thrill of flipping through the magazine and tearing open that sealed section. I know there will be a digital version, but the experience won't be the same. Nothing compares to the sounds of flipping a page or the smell of a brand new magazine.
I remember when I was in year 9 my parents wouldn't buy me an issue because we couldn't afford it, so I went to so much effort making my own magazine called 'Rocks Teens' filled with celebrity goss and stories I had written. I even made up my own version of Dolly Doctor 'Dr Rocks' where I made a copy to share with my friends. It was a lot of work but I really wanted to be a writer and loved graphic design even back then.
Dolly, you will always remain a cherised memory of many teenage girls, especially those socially awkward introverts (like me). Thank you for your service for almost 5 decades!!
Friday, November 25 2016
Earlier this year, I was on a Canteen camp for members aged between 18-25. At 'camp' we not only talk about cancer but Canteen organises various workshops that help to teach us valuable skills, and often skills that we can implement in our lives right away.
Some workshops are about stress management and coping mechanisms, others are about learning to cook healthily on a budget (first time ever making hommus) and the ladies from Newcastle Permanent came to talk about budgeting and to teach us tools to succeed. I really enjoy all this money related.. I love saving money, I love frugal shopping, I love bargain hunting but I also love spreadsheets and budgets (yes I heard you yawn), I really do miss my days working in finance at a bank.
Another workshop we had was about gratitude, creating a gratitude jar and telling people when/whom/why we are thankful; we also talked about what makes you happy and the value of people and memories over materialistic objects.
We were introduced to the Science of Happiness, which was a video where several people were asked to think of someone they are thankful for, to write down why in a letter and then they were asked to ring the person to tell them.
The study concluded that people who were grateful or showed grattitude in their lives were in turn more happier than those who didn't.
I highly reccommend you check out the video on youtube by clicking here, it is such a heartfelt experience... well for me it was anyways.
I have been feeling a little overwhelmed lately with my life and been struggling with facing my mortality at 25, struggling financially, but I also have felt a little lost around my self worth and value. Now, I don't want you to roll your eyes and think I am asking for sympathy or being an attention whore, I'm not trust me, I do have an important message if you keep reading on.
I decided to join some of those blogging groups where you learn how to make a lot of money blogging, kinda regret joining as it has me feeling more pathetic than I was before I joined.
Now blogging for me hasn't always or ever been about the money, I blog because I want to help others so they feel less alone, but then there are costs to running the blog like hosting fees ($30 a month) and sometimes I wished I could find sponsoring to not only help cover the running costs of the blog, but to also give me a little bit of pocket money.
So in this blogging group a coach talked about how if your blog isn't gaining the attention of sponsors or advertisers than you must be doing something wrong and that there is no value in your blog if people aren't wanting to advertise that the readers (you guys) are being sent the message that it isn't worth it.
So you can imagine I felt pretty embarrassed, pathetic and wondered is it worth it all?
So fast forward to this week, where I got an email from a reader who said:
I tell you what, I re-read that email several times each time with tears.
I felt pride, self-worth, appreciated and needed in the first time in a long time, and it was something I really needed to hear. While I see so many people reading my blog posts, I never know if anyone gets value out of them or if I am actually helping others. So it made the world of difference being told thank you.
I also realised that money isn't what makes MY blog valuable, it is me.
So it got me thinking just how good it feels to be told genuinely that someone is thankful for you or something you did, and that person also feels happier knowing they have made you happy.
So if there is a blogger who has helped you, please do ocassionally stop by and leave them a comment or an email thanking them, it made such a difference hearing that for me personally and I am sure other bloggers would appreciate it too.
While I have been feeling down lately that I didn't have much of a legacy to leave behind, I realised that this little blog of mine is what I am leaving the world with.
I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel a little appreciated too.
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:
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.
Our need for a new car:
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.
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:
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?