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Feeling Ostomistic
Wednesday, September 21 2016

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

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

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

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

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


Out and about Port Macquarie July 2016

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

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


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

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

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

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

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

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

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

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

☟☟☟☟☟☟

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

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

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

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

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

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

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

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

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

Posted by: Talya AT 10:40 am   |  Permalink   |  0 Comments  |  Email
Monday, September 05 2016

Russell, a.k.a The Ostomistic Husband, has a second blog post or an open letter that he wanted to share with you.

While you might have only said this to us once or twice, and you might not mean anything more than just a compliment, but you are more than likely not the first person that has made that comment to us today. Everyday we are faced with these comments and it is making Russ rather upset as he wonders what do people actually expect of him.

And worst, is that this is how society expects men to behave, that they can't commit and that they won't stick around when shit gets real. Russ is a modern man, and a man true to his word.

☟  ☟  ☟  ☟  ☟  ☟

My open letter to those who continually say "you're a good guy for sticking around" or those who continually say to Talya, “Russell is a good bloke for sticking with you through all this…”, I have the following to state:

I’m not sure how often you’ve heard that little gem, but I’d really like to open people’s eyes to how I feel when they say it without obviously thinking it through.

I’ve been with Talya for 7 years now, and she’s progressed through varying stages of unwell since I first met her; I proposed to her in her hospital bed while recovering from brain surgery (with a golden staph infection on her brain) for Christ’s sake.

I know I’m not going anywhere.

The thought that I could leave only occurs to me when you tell me I’m good for not leaving. Talya knows I’m not going anywhere (I tell her often enough), but she starts to wonder when she keeps hearing, “Russ is good for sticking around” which her inner voice relays as, “I’m a massive burden so why should Russ want to stay?”

Love:
Talya and I have a connection that may only come once in a lifetime.

Why would I want to give up on that just because Talya can’t go for a walk with me? We have access to a wheelchair now so we can still wander through the botanical gardens.

Why would I leave just because she can’t cook or clean? What is this, the 1950’s? Those are basic life skills everyone should learn, man or woman.

Why would I deny myself the true pleasure of simply seeing her smile when I come home from work? That is the highlight of my day. Every day.

Commitment:
I vowed to be there in sickness and in health. That was a promise I made in front of our friends and families, but more importantly, one that I made to her.

We are only as good as our word. I gave her mine, she gave me her heart.

Forever:
I have stuck around because she is worth every second I can give her. I will continue to be by her side until she becomes the angel she’s always been inside.

And you’re right, I am a good bloke......

Because I met her!

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. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.

*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.

 

 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 appreciated too.

 

Posted by: Russell AT 07:26 am   |  Permalink   |  3 Comments  |  Email
Sunday, September 04 2016

I often wonder if my dad's bowel cancer had of been detected early on, would he still be here today? I believe that he could have been, especially if it hadn't metastised yet.

I also wonder, would he have needed a stoma and if he would have been okay with needing one if it meant he would still be alive.

Then I imagine my dad and I twinning at being stoma bag buddies, and sharing a humour about life with a stoma that only we would understand and appreciate.

My dad was one tough bloke, he was WAY tougher and stronger than I could ever be. He hardly complained about being in pain, and although you could see in his eyes he was exhausted, he would still make sure that he was there for us kids.

But, I know how hard living with a stoma can be, especially in those first few months.

I know if my dad were given the choice of life with a stoma or death he would have opted for living, he would have done anything for his kids. He would have made jokes about having a leak in public, and gone "well, fuck. Shit happens aye". 

He probably would have even said something like "don't scare me like that... I shit easily".

But something totally corny and dad jokey would have been "talk about de ja poo... I've heard this crap before"... or "Did you know that diarrhea is genetic... because it is running in my jeans".

Dad was a true comedian and could turn any situation into one that could make you laugh... I think he would have continued that humour and his positive outlook through having a stoma too.

I like to think that is where my strength, ostomism (optimism with a stoma) and humour come from.... and in a way I feel that he helps me to get through each day by asking myself "what would dad have done/said".

Even after his death my dad continues to inspire, motivate and give me the strength I need to get through my day.

Happy Father's Day dad.

Tell me, is there something that you inherited or share an interest with your dad?

 

 

 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 appreciated too.

 

 

Posted by: Talya AT 11:01 pm   |  Permalink   |  1 Comment  |  Email
Saturday, September 03 2016

This blog post was written as part of a competition sponsored by ProBlogger, Shoebox Timeline and The Good Guys.

When you meet someone and after they've learned that I am a blogger, one of the first questions they ask is "why did you decide to start your blog?".

I smile, and ask how much time they have.

In short, I started my blog because I was 21 and just found out that I had early stages of bowel cancer and that I would be requiring surgery within the coming months to remove my entire large bowel and that I would live the rest of my life with an ileostomy (an opening in my stomach that essentially becomes my anus and does what anus' need to do).

So I was struggling to understand how I could live life as a young female with a stoma, and how will it change my life (other than how I now go to the toilet). I was scared, I felt alone and in all my research I could only find material and resources aimed at the older & retired generation.

I had questions about being intimate, sexuality, body image/confidence and even fashion. But I either felt embarrassed to ask my doctors or nurses or I was thinking "they're not young they mightn't understand the importance".

I decided to change that, I knew if I was struggling to find relatable content then surely others must be too.

I microblog on my Facebook page as well as blogging here and I talk about issues with my stoma such as skin health, dealing with leaks or ways to help make my life living with a stoma a little easier; I share fashion tips I have learnt along the way as a plus sized young female with a stoma; I talk about body image and addressing people's comments when they tell me that I am "gross" or asking "how does your husband still love you"; and I also talk about ways to help make each day better, such as how I add happiness into my day

I also write about other areas of my journey or life that might help inspire others who are chronically sick, or have a loved one who is in hospital or isn't sick but wanting to feel motivated to make a change in their life; I wrote a post for my brother's doing year 12 and about the pressure placed on their exams and that my results didn't dictate my future; I shared budgeting tips and things to review when on a budget; I share tips on self-care and how being sick affects more than just my physical health; and I even shared how I had a wedding for under $2500!

I created a Shoebox Timeline, which is a visual of the why behind my blog and sharing the various topics/awareness raised through my blog and also on social media (Facebook and Instagram). What I loved about creating this slideshow was it allowed me to show in a creative and fun way just some of the important conversations we've had. Check out the video below or head to my Shoebox Timeline to view too. 
P.S I know the video goes too quick on some slides to read, but just hit the pause button at any time to fully take in the content!

My blog name came about one day when I was talking about needing to be optimistic with a stoma. I had gotten tongue tied and instead said 'ostomistic' and so I realised it had to be my blog name!

So I started my blog and shared my story openly, and I know it was the best decision I made as so many people have connected through my blog and have told me they don't know if they could have gotten through this journey without my blog.... which is touching, and is the reason I keep doing what I am loving.

The other part of my inspiration to writing my blog, is that in 2012 I lost my dad to bowel cancer. He was only 41 when he died and he didn't seek medical attention early enough, and when he finally did get in to see the doctor he wasn't taken seriously and was told "you're to young for bowel cancer, just take these tablets to stop you being constipated". He wasn't constipated and he hadn't eaten in months as he had a large tumour blocking his rectum. But if he had of seen a doctor early enough, there is a chance he could still be here today.

I am a strong advocate for bowel cancer detection and screening, and I try and empower others to get checked, because if bowel cancer is detected early enough it can be treated. However, only fewer than 40% of cases are detected early. I hope that through sharing this it could help save a family's heartache of having to say goodbye to their loved one too soon.

As my journey changes with each new cancer diagnosis or finding out that I am 25 and terminal with cancer, I haven't lost my passion or vision. If anything, it just makes me more determined to share what I know and to help as many as I can before I pass on.

I know that as my blog changes with my health, that it could be upsetting for some readers when facing with their own mortality, but if I focused on the few that I could be upsetting and stopped writing about that issue then I could be hurting a lot more that need to read my words and hear my message.

Through my blog I have learnt a lot about myself, but I have felt a greater sense of self-worth and accomplishment. I have even presented talks at local stoma conferences where I was asked to share life with a stoma as a young person, it was a room filled with mostly older people, and they all said they learnt a lot from my talk.

There have been times where I felt uninspired or unmotivated to write or blog, and questioned if it was all worth it... there have been times where I felt like giving up. These moments were usually at a time where I was going through some health issues and having a hard time coping, and I hadn't received comments on my recent blog post and wasn't sure if anyone was finding value in it.

Then someone will reach out to my facebook page or email me with a question or an issue and telling me they need my help. It is in that moment that I realise that I can't throw in the towel as my blog does matter and I am making a difference to someone's life. When I am told thanks for helping them it helps to inspire me to continue sharing my voice.

I believe that life gives us many opportunities, we just have to be willing to look for them and ready to run when we find them. I turned a lonely struggle into a resource that has been used by many patients and their families, as well as university researchers using my patient's perspective to form their thesis'.

Do share in the comments below what inspires you, or if you blog too, what inspired you to start blogging?

 

 

Posted by: Talya AT 06:06 am   |  Permalink   |  1 Comment  |  Email
Friday, September 02 2016

I am often asked and often daily, how do I remain so happy or positive despite everything going on in my life.

I am a big believer in self-care practices, and one of the tools incorporated into my day-to-day routine is doing at least 1 thing for me or something that I know will make me happy.

I also designed myself a 2016 calendar, with each month a different quote or positive message to myself. I look at this daily and it is pinned above my computer as a reminder of not only what needs to be done that month but a positive message to live by too.

A big part of my bucket list (also calling it my happy list) is mostly things that I want to achieve because I know that will make me happy.

But I also know that no matter how bad today gets, the sun will come up tomorrow and it is a fresh new day.... there are 365 days in the year and that is 365 opportunities to make yourself happy!

So I thought I would share at least 5 things I can do to make my day that little bit brighter.

#1. Learning to say no and knowing my limitations or delegating:
I have found that if I am feeling a little overwhlemed during the day or over a week I will set myself the task of trying to say no, especially to things that I know I either don't have the energy to deal with or just I know it is something I really don't want to do. If it is something I know can be done an easier way or know someone who could probably do it better than I could I delegate that task/chore.

#2. Crafting or creating:
I know a lot of people think that they're not creative or don't have a creative bone in their body, but I don't think this is true. I think everyone has the ability to be creative one way or another. It could be something like expressing yourself with your outfit or hair or makeup. For me, I love craft especially papercraft and can completely zone out. I also like designing things on the computer too.

#3. Writing or journalling:
I write a lot everyday... I write lists, I write blog posts (even though I have no intention of ever publishing some) or I write goofy love notes to Russ. One thing my dad did before he died (that I didn't get until afterwards) was a letter he wrote to me and it is something that I cherish. I am working through a list of people I am writing letters to, which are to be given out after I die. This also comes into the next step too.

#4. Grattitude:
I am so grateful to a lot of things and especially to a lot of people. If someone has done something for me, even if it is just a small token, I like to make sure they know that I am grateful to them. I also have a grattitude jar where I write down something that has happened that day or something someone said or did and then at the end of the year I read back through and find reasons that made me grateful. 

#5. Do something for someone else:
Whether it be dropping around a meal if they're having a hard time, or taking them out to coffee, even as little as watering their plants while they are away is a kind gesture to do for someone else. I like to try and find at least one person I can help or do something for of a day, and it makes me feel better about myself as I did something for someone else. Even smiling at someone (a stranger), or saying "hi" or giving a compliment can help boost their day and make them smile!

Bonus - Do something for me:
This might sound strange given my whole list is about doing things to make me happy, which in itself is doing something for me, but I try and do one specific thing that can be selfish or indulging... but it is something just for me. Like today, I was having a stressful week and was in a grumpy mood so I went and treated myself to lunch overlooking the ocean, was just me on my own, and it was nice just doing something outside of the house and something that I needed (you need to eat). Other things could be getting your hair done, having a facial, eating a nice caramel tart or buying something that I want just because. I also like to chat to friends or browse sale sites for a bargain... Russ tries to say I am most happiest when spending money (he is a comedian or so he thinks). You might even enjoy going for walks and find walking (or running)  makes you happier.

P.S Tell me, what do you try and do that makes your day happier or brighter?

 

 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 appreciated too.

 

Posted by: Talya AT 09:57 pm   |  Permalink   |  1 Comment  |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

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

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