Skip to main content
#
Feeling Ostomistic
Friday, January 12 2018

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

The post was:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


21-year-old me

Letter To My 21-Year-Old Self:

Talya,

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

Yes it changed your life but it saved it too.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,
your older and somewhat wiser self

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

 

 

Posted by: Talya AT 06:47 am   |  Permalink   |  0 Comments  |  Email
Thursday, December 14 2017

If you have just read part 1, You will have learned: how heat can affect those who are vulnerable or sick or with an ostomy; what are the different heat related illnesses to look out for; what are the symptoms of the heat illnesses; and lastly, how/what to do under each situation.

NB: It is important to remember that this is just an informative guide only and I am not a nurse or doctor, and any individual circumstances or advisement is based on each person's own circumstances. If you have questions to follow it up with your team.

So in this Part 2, I will be sharing tips to help you be more prepared for the weekend

But just in case you haven't read part 1 yet, basically here in Australia we are preparing for an extreme heat wave which will occur over the weekend and most of Australia will be experiencing temps of 35'c-45'c+.


Image from Higgins Storm Chasing, providing a visual of just how much of Australia is to be affected

I have an ostomy, ileostomy to be exact, I also have other chronic co-morbid health issues/illnesses and take various medications which put me at higher risk of sun related illnesses.

I started writing this post a couple of years ago but never finished it in time for it to be relevant, so I am finishing it ahead of this weekend, I only hope it might help someone to be more informed of their own circumstances and to know what to do.

To read part 1, click here:

Also keep in mind anyone you know who might be at a higher risk of suffering with the heat, it could be a neighbour who is elderly and lives alone, or it could be checking in on a friend, just to make sure they are doing okay - as the heat can affect many in different ways.

Part 2: Being prepared and tips to surviving the heatwave

I thought it might just be helpful to share different tips to help you get through the heatwave, if you have your own be sure to comment.

Tip #1: Never leave kids or pets alone in a car
I know this hopefully is common knowledge, but you'd be surprised how many times I have been at the shops and found pets or kids sitting in the car while their parents or owners shopped. Even with the windows down or leaving the car running with the air conditioning going, the car is still going to be hot.

Even on a "cool day" this is a no-no. While the temp outside might only be 25'c the temps inside that car can be 55-70'c! It can rise 40 degrees hotter than the outside temperature, so imagine how hot it would be on a day during a heatwave.... scary to think. The damage it can do is increase a child's body temperature, which could lead to brain damage... not to mention what it does to pets too. 

I have seen videos and experiements where a chef has cooked a lamb while inside a car, to a vet documenting what it is like in a car. I do not suggest trying it out yourself, there are plenty of videos and information out on the interwebs about the consequences to leaving pets or kids in cars, which can be deadly.

A child left in a parked car under those conditions for even a few minutes can very quickly become distressed, dehydrated and can die from organ failure. If you see anything, you need to act quickly. If you wait, it can be too late.

What to do if you see a child or pet in the car?
The NRMA advises: You must make a judgment call as to whether it is a life and death situation and you would need to break a window yourself and call an ambulance, or whether you should call 000 and ask for police, who will get there as urgently as they can (and will break the window themselves) and they will call an ambulance.

If the child is clearly distressed, do not wait for help. Instead, break a window and remove the child from the vehicle until help arrives. If you break a window, and the child is simply asleep and it turns out not to be an emergency, it is possible that you could be required to pay for the window.

You don't have to be an NRMA member to call for roadside assistance if it is in less urgent circumstances. Because of the grave danger involved, the NRMA drops everything to respond immediately to calls where a child is locked in a car.

For pets: Visit Just 6 minutes, a site by the RSPCA which outlines that it takes only 6 minutes of a dog left in a car to die. Here is a factsheet of pet first aid if you can rescue the pet from the car and can wait until the owner arrives. Call 000 immediately and ask what you're legalities are if you can smash the window. But some states you can receive a $200k fine and imprisonment for leaving a pet in the car.

Tip #2: Have plenty of water
Water is important for helping you to stay rehydrated, make sure you have plenty to drink. Consider taking a bottle of water to someone who is experiencing homlessness, they might not have adequate access to water, it might not be a lot but it is a nice gesuture to look out for someone who is at high risk of heat related illnesses.

You should drink two to three litres of water a day even if you don't feel thirsty. 

Tip #3: Have electrolyte replacement on hand
If you're like me and have an ostomy and need to replenish lost electrolytes, make sure you have enough to get you through the weekend. I try and have a 1L bottle of sports drinks, I get the powder and mix in the water, and have a few of these made up in my fridge ready. You can consult with your Nurse or dietician over what is the best option for you to replace your lost electrolytes. Due to having no large bowel I am at risk of dehydration, which is worse in Summer and extreme heat. Salts and minerals are vital for your body's functionality.

Also important if you don't have an ostomy but have gastro or vomiting bugs during a heatwave too. Hydrolyte is an electrolyte drink which also comes in the form of icypoles too and can be found from most supermarkets or chemists.

Tip #4: Stay cool
This is important, especially if you struggle with body regulation, you need to find somewhere cool. Air conditioned is preferable, if your home isn't air conditioned maybe ask a neighbour or friend if you could join them, otherwise hit the shops and enjoy their air condiitioning too. If you don't have air conditioning find somewhere cool in your house and put on a fan. You could go to the library, cinema, art galleries, cafes too.

If you are outdoors try and find a nice shaded tree and be sure to keep hydrated.

You could also use one of those battery operated hand held mist fans Kmart have them for $5-$10, or a spray bottle with water in it to help.

A cool tip, get it (lol) I have one of my heatpacks in a zip lock bag and in my freezer. This turns into a cold pack and means I have a cool option too. I get my heatpack/cold packs from Chatterbox City.

Tip #5: Keep plenty of drinks in the fridge prepared
Fill as many bottles as possible and put in the fridge, some could be cordials or soft drinks, but limit the alcohol. Plenty of cool drinks will help keep you cool

Tip #6: Have ice packs or blocks in the freezer
Firstly, ice blocks or icypoles are a great way to keeping cool and hydrated in Summer. You could also freeze water bottles so they last cooler for longer, if you are going to the beach. Ice packs are good to keep on hand in case of first aid and if you need to aid in cooling someone down. See part 1 for how this works.

Tip #7: Keep blinds drawn
This will help keep your house cooler, even if you have air conditioning going, keeping the blinds drawn will help your system to not have to work overtime too. But if you don't have air conditioning it will still help if you have a fan too.

Tip #8: Wear light summery clothing
Avoid wearing lots of layers and wear something light and breathable, this will not only help in keeping your body cool but will aid in your body trying to regulate it's temperature. Avoid wearing dark or black coloured clothing. Clothing light in colour reflects the light better.

Tip #9: Be sun smart and sun safe
Slip, slop, slap. Sunscreen, a hat, sunnies and a shirt are not only safe ways of being out in the sun but also help in preventing melanoma. If you must be out in the sun keep out of the sun as much as possible - during a heatwave you should be minimising your sun exposure. Seek out shade.

Tip #10: Reapply sunscreen often
Even if it is overcast, you can still get burnt and when you're swimming sunscreen washes or rubs off after time, so everytime you come out of the water or as often as indicated on the bottle: reapply. Also if you do happen to get burnt, have some cooling after sun gel in the fridge to help your skin cool down, aloe vera fresh from the garden helps too.

Tip #11: Don't lie in the sun exposed
If you're planning on laying on the beach and reading a book, chances are you could fall asleep and get sun stroke. A heatwave isn't the right time to do this, seek out shelter or shade or plan your trip to the beach on a day where the weather isn't as hot.

Tip #12: in case of a blackout
It is important having items such as a torch, a battery operated fan, extra batteries, bottled water and first aid kit on hand in case of a power outage. Also, wrap medications that need to be refrigerated (such as insulin pens) in foil or place in an heat repellent container with some ice in case of power failure.

Tip #13: Open the house at night or evening if a cool change is forecast
This is self explanatory, but this might help to keep the house cool of a night or the next day if air gets circulating around, remember to draw the blinds early in the morning to keep the heat out and the cool in.

Tip #14: Pets or wildlife
Pets can be particularly vulnerable to the heat. Make sure they have shade and plenty of cool water to last the day. If you live near the bush, consider leaving a bowl or bucket of water out for any Koalas, kangaroos, dogs or cats or other animals that might want water.

Fill a kids clam pool sand pit thing with water and put in the shade and let your dog cool down when he needs to.

Tip #15: Keep your body cool but not freezing
It is important to remember that while you want to cool your body down that you aren't changing your temperature too quickly or suddenly. You could go swimming or lay in a bath if you run the cool water before the hot to cool down. You could set the sprinkler up or a water slide, brings back good memories being a kid and having a tarp and sprinkler on the yard and having a good old time. Just remember to be sun smart too!

Tip #16: Check in on those at risk
Keep a close eye on those most at risk, like the sick, the elderly and the young (a full list of vulnerable at risk perspns is in part 1). Do this at an arranged time at least twice a day. The heat affects everyone differently and adversely, be sure to make sure they have plenty to eat.

Tip #17: Watermelon
Would it be an Aussie summer without watermelon? I love watermelon, it is full of water plus it is a good source of electrolytes too! Make it fun by using cookie cutters to make fun shapes too. If you get sick of water, maybe have some watermelon to help replenish you. Your body will thank you too, it is oozing with benefits too. 

Tip #18: Foods
Enjoy delicious salads and cold meats for dinner, while a hot meal is delicious, it will only make you sweat and feel hot cooking away in the kitchen. But with the heatwave foods like strawberries, cucumbers, watermelons, celery, tomatoes and broccoli and lettuce contain water, which can be benefitial towards your water intake.

Tip #19: Wearing a stoma cover
I get rashes on my stomach under where my bag sits against my skin, especially when it is hot. I found last year if I wore an ostomy pouch bag cover it helped to relieve the rash as it wasn't plastic on my skin and it worked as a barrier between my skin and bag. If you find you get rashes too maybe speak to your nurse as she might have some bag covers or be able to point you in the right direction to where online you can find them. I had a friend make me some. Theres heaps of options if you google too.


My cover a friend made for me

Tip #20: Mashmallows
I find when I am dehydrated or in Summer my output is more watery. It is hard sometimes to keep my hydration up when this happens, but I have some marshmallows and immodium to help thicken my output. Sometimes a watery output is a sign of a blockage too, be mindful of this as you may need medical attention.

☟ ☟ ☟ ☟ ☟ ☟

I hope that you have found these 2 posts helpful on how to prepare for a heatwave with an ostomy, I know they have been long posts but there was a lot of information I needed to share with you. These posts do not replace the information of that of your nurse or doctors, it is a guide to help inform you of the risks and tips on getting through the heatwave safely.

Please be sure to seek medical attention if you require it and don't delay, heat related illnesses are deadly serious.

More Links through my research:
- On how medication/heat affects you:
- Heat related illnesses and what to do: NSW health
- SES heatwave fact sheet
- SES heatwave tips
- ABC heatwave tips
- Know your risk
- Heat and children: NSW health
- Cancer Council Australia slip slop slap seek
- Just 6 minutes pet first aid
- NRMA children in a hot car

If you have another tip, be sure to let me know in the comments below. To read part 1, click here

Posted by: Talya AT 10:15 am   |  Permalink   |  0 Comments  |  Email
Tuesday, June 13 2017

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your best teacher is your last mistake

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

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

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

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

Always remember:

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

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

The moment is here - The magazine was born!

Welcome to the first issue of the Ostomistic Life, a free quarterly eZine dedicated to helping young people with an ostomy to navigate their lives. It is founded by a young ostomate for young ostomates... but anyone can read it.

When I originally started my blog it was because I was struggling to find relatable content because representation in the media matters and since was a passion of mine to try and help other young people with a stoma to feel less alone. I learned graphic design and had a dream of one day starting an online magazine... and I have!

I had originally planned this to be created and launched at the end of 2015 but I started chemotherapy and wasn't able to dedicate the amount of energy, time and love that this baby needed... which brings us to now!

I hope you enjoy the first issue, it has been curated with incredible content from an array of contributors as well as some pages to win.

Thank you for sharing in this exciting moment and happy reading.

ISSUE 1 | The Ostomistic Life eZine

I know I only have the Australian Stoma support groups/sites listed, I underestimated how long it would take to collate the whole world. I am still working on this and will be added as each page is ready (apologies)

If you love it let me know.

Work on issue 2 has begun, click here to sign up to receive the next issue straight to your inbox. For articles I am looking for or if you have a topic you want to discuss please get in touch. Some ideas can be found via the pinned post below or on the facebook page

Posted by: Talya AT 12:16 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
Monday, March 21 2016

Reading that heading, are you thinking "Wait did I just read that right?".

Well my friend, you certainly did.

Firstly, let me start by saying this is nothing sexual. Not that I am judging anyone who is into that sort of stuff... but my doctor advised me I needed to start fingering my stoma for medical reasons not sexual.

You might recall me complaining and sharing the recent experience of my new stoma here on my blog and on social media, and if you've been following from home you'll know that this new stoma is a bitch and is tricky and is very leaky!

One of the problems with the stoma, is due to the remaining tumour being completely adhered to the stoma it is pulling the stoma down from the surface and making it retracted.

Imagine a cone or a funnel, how you have a bigger and wider opening towards the top but at the bottom/base it is a smaller and more narrower hole.

Now imagine that small hole is under a lot of pressure and is getting smaller and smaller because it is being pulled down. 

Imagine that hole getting so small and closing up that passing any sort of waste through the stoma would become rather painful... That smaller hole is the part of my small intestine (small bowel) that USED to be stiched to the surface of my skin, and is now sitting some 5cm below the surface of what now looks like a belly button hole.

.. well this is what I am facing with my new stoma. There is a high chance that I could need corrective surgery (which might only make things worse) if it gets to this last stage.

But my doctor told me I can avoid this by doing one simple thing each time I do a bag change or at least once a day... and that is fingering my stoma!

It doesn't have to be rough or anything, but if I put my finger down into the stoma and just sit it there it should help to stretch it out. It does kinda hurt, it does bleed a little and there is often a huge gush of waste coming out.

But as much as I hate doing it I also don't want to be in the position where it will close over an become painful (or I should say more painful).

I just wish I could go back to how things were with my old stoma... I am really missing it!

disclaimer: please don't go stretching your stoma hole willy nilly without the guidance of your bowel surgeon or stoma nurses, I am simply sharing my recent experience in the hopes of helping someone in a similar situation feel less alone or feel empowered enough to ask if it is something they need to do to help their own difficult stoma.

Posted by: Talya AT 06:00 am   |  Permalink   |  0 Comments  |  Email
Friday, August 21 2015

NB: This post is an entry for the Heritage Bank Savvy Blogger Awards  please click on the icon at the bottom of this post, to vote for Feeling Ostomistic and you could be in the running to win $100 and help me to win a share of $11k which I want to use towards my chemo (and medical costs) coming up. Would mean a lot if you could support me.

Without a doubt you might have heard about the extremely over-the-top wedding in Sydney recently, if you haven't you may have been living under a rock... in that case I will summarise it for you. This super rich couple had a wedding which they closed down entire streets in Sydney causing traffic chaos, and their wedding car fleet involved cars worth a collective of $50 million dollars, as well as hiring helicopters, sea planes... but to have a nice wedding do you NEED to spend millions?


My dad and I at my wedding

I remember when I was planning my wedding years ago I wanted to have the big white wedding, and I was panicking at the cost it was all coming to (something like $10k+) and so was my husband well then fiance... and very quickly the wedding planning was becomming more about pleasing everyone else and catering to their needs rather than creating a day that was perfect for my husband and I.

Because of how much our wedding was going to cost we were planning it for 2 (almost 3) years away. But then something happened (rather fate as you might call it) and in the middle of June my then fiance (who struggles with large numbers of crowds and public performance) was rather overwhelmed with the wedding guest numbers and gave me an ultimatum....

He said either we get married in a month at the courthouse or we don't get married at all!

So I said that I will change our plans and organise a wedding in 4 weeks on a limited budget as long as we have a nice honeymoon and I get to have a nice 21st 2 years later and it be the wedding reception I had of hoped for....

Let's clear one thing up... there was no way I was getting married in the courthouse and I knew I had to plan a nice low-key wedding that was still memorable, that my husband would agree too and decided to make it as nice as I possibly could on a limited budget.... 

All in all, our wedding cost us just under $2500 and that was including everything!

Here are 10 ways I helped to save money on my wedding in under 4 weeks of planning, and I don't regret it at all!

#1 the dress = $220
My top tip when it comes to shopping for your wedding is to head to the stocktake sales in either June or after Christmas, as you will find some amazing bargains! It was lucky that all the stocktake sales had just started when I started planning my wedding in June something like 5 weeks before I was planning on getting married.

I knew it would be almost impossible to find the perfect traditional wedding dress in my size and budget within 4 weeks, and I knew I also wanted to be different to the norm as well.

So my wedding dress was this beautiful purple formal dress that just happened to be on special for $220 and was a perfect fit. Purple is my favourite colour too, so I knew it is a dress I would be happy in and happy to wear again.

#2 the tux = $250 (including jacket, pants, tie, vest & shirt)
We were lucky that we found the perfect suit on sale (thank you stocktake clearance) and imagine my delight when the entire combo including the tie, vest and shirt came in at just $250! The tux alone was normally $500 odd.

My husband has since worn the suit to weddings, funerals and job interviews.... and if you too saw him in the vest and suit you'd hire him too (bow chicka wow wow) [He would kill me if he knew I said that...truth...]

#3 the wedding bands = $300 for both
When we walked past the Micheal Hill Jewellery store, and Russ decided he wanted to check out wedding bands (and saw they were on special) and decided to buy them to put them away, it was the event that sparked his sudden need to get married and realised that the longer time went on the more he was getting anxious and couldn't do it.

So we found the rings were on stocktake clearance my wedding band was $200 (including a gorgeous row of diamonds) and his simple 'boring' band (as I say) was around $100. Was an absolute steal!

#4 the celebrant and photographer = $1200
How I found our celebrant and photographer was by an absolute fluke. I was at work (at the time as a telco department manager in a now closed electronics department store) when a customer came in needing a new phone contract. I happened to sell him the top of the range iPhone 3s (was THE.BEST.THING.AT.THE.TIME) and we got chatting about his business.

He told me he was a wedding photographer and organised elopement packages or small wedding packages which included the celebrant and photography during the ceremony and 1.5 hours afterwards (and all the photos printed in an album and on a disc too).

I went to the lunch room and found Russ (we happened to be working together at the time... he a computer salesman and I in the next department over selling phones and iPods.... no we didn't start dating when as co-workers.. and yes I got the job there after we were engaged) and told him I might have found us our celebrant and photographer. Russ came downstairs from his lunch break and the guy was still in the store (now needing to buy a new laptop) and we got chatting more about what he could offer us.

He said he had packages starting at $700 but for what we were wanting he could offer a small wedding ceremony and photography package for $1200. This was strictly 25 guests, the set up of the ceremony, the photography (including disc and images printed), the celebrant and filing of paperwork and any other legal fees.

While this meant we could only invite a small number of people to the ceremony (and I know some were a bit peeved about it) but it was all we could afford and had the most important people to us there. However, as we were having the reception/after party back where all my family lived (2 hours south) everyone was invited and most people understood (having had been married themselves knowing too well the cost involved).

#5 writing my own wedding ceremony = Priceless
I wanted our wedding ceremony to be really special, and to also help save on the costs of the celebrant I decided that I would write our entire ceremony (except for the legal blurb the celebrant has to state and a couple of readings), But otherwise the rest I wrote and composed myself (with of course the help from Russ).

#6 2 tier wedding cake = $200
When I went around getting prices of cakes from different bakers most were in excess of $600+ which just wasn't in my budget. I thought I would test the waters a bit and ask how much it was to have a 2 tier cake made (and left off the word wedding) and surprisingly it was much cheaper.


Our wedding cake

#7 bouquet of flowers = $30
Similarly, I found flowers (just like cakes) suddenly had a surcharge applied when you mentioned the word wedding. All I wanted was a nice bunch of white lillies with some nice white ribbon tied around them. These were $30 when the word wedding wasn't mentioned, and when it was it became $150.

I also thought it would be pretty yet simple if my sisters held one pink gerbra (with ribbon tied around) instead of a bouquet. I also gave them bubbles to blow through the ceremony so they wouldn't be bored and run a muck (they were afterall only 7 and 8). And a lot of the photos with the bubbles turned out beautifully!


My flowers

#8 Flower girl dresses = $50 each
Just like our attire we found the girls flower girl dresses reduced on the stocktake clearance racks for just $50 each! They needed a little adjustment to be made to the bodice, but otherwise were a perfect fit.

#9 Food at the reception (free for us)
We decided to have our reception/after party at a local pub that was a familiar spot for my family. I wanted it to be informal and inclusive of everyone, and as the pub did $5 feeds, I asked everyone instead of buying us a gift to insted pay for their own meals and drinks. My dad and pop ended up putting a tab on the bar as a wedding gift, which everyone (including us) were appreciative of. Although, it didn't last terribly long (even though it was only covering beer, soft drink and wine).

#10 Venue hire (free)
When I was looking into planning my wedding I was searching for places that were FREE or very low cost involved for both the ceremony and the reception. For the ceremony we got married on a headland overlooking the beach (and had whales breaching just off the headland- was magical) and didn't need to pay a fee (although check with your council as some require a permit). And then for the reception, we just hired out the pub as a private function and although I offered, they didn't accept money for the venue hire.

I didn't have it decorated much, just some tablecloths, DIY balloon centrepieces and the cake table decorated. But you can find some amazing DIY wedding decor on pinterest or local selling sites.

More ways to save on your wedding..
* I did my own DIY invitations (which were rather basic) before I had even dreamed of starting my own handmade invitations business (making my wedding invites seemed to have sparked an interest in handmade invitations for me).
* Hair, I visited my hairdresser a week prior to have my hair colouring and trim/tidy up done along with a hair trial. Best to get the colouring done at least a week before and not the day before so you have time to prepare in case you don't like it.
* Makeup, sometimes you can find students at TAFE who are studying and needing experience who can offer their services at an affordable rate. Otherwise, you can always reach out to your friends or family who are familiar with makeup and ask for their help.
* Wear in your shoes before your wedding day, nothing worse than walking around with sore blistery heels and feet.

While it may seem like my wedding was rushed (honestly had 4-5 weeks to plan it) I am so glad that I got married when I did rather than waiting until 2012 like we initially planned on getting married, as this meant my dad was able to walk me down the aisle and be there on my wedding day (not long after our wedding he was diagnosed with terminal Bowel Cancer, and passed away in March 2012).... I now have memories I will forever cherish from that day and conversations had (that still make me laugh). I don't regret have a cheaper low-key wedding, and after 5 years of wedded bliss this year, only proves that you don't need an expensive wedding to make a happy marriage.... also saving costs where possible meant we could go on a nice honeymoon to Hamilton Island for a week.

One last tip... A wise person told me before my wedding that I needed to savour every moment of the day and take it all in, as the day goes rather quickly especially when you're excited, and you don't want to miss out.... they also went on to say that if you make it back to your hotel suite and you are too tired (or drunk) to consumate your marriage, that it is okay and not to feel pressured that you HAVE to do it on that night... there is always the next morning and you have your whole marriage to worry about that (hehe).

Hope some of my tips shared can help you on your wedding planning, if you have a tip for others feel free to share it in the comments below.

 

 
Posted by: Talya AT 10:56 am   |  Permalink   |  2 Comments  |  Email
Friday, October 24 2014

I have been waiting a while to publish this blog post as I didn't want to ruin the show for anyone who has yet to watch the latest season of the show Winners & Losers (aired on 7 Tuesday Nights at 8.40).

But although this season had the usual up and down moments of emotion, there was something that really stood out to me.

I wish that I could say that I have always found the show relatable, but unfortunately I haven't had the luck of winning the lotto.

But there was something this season that made the show more relatable to me...

Have you ever sat there and watched a show or a movie and just either thought or said out loud the occasional 'uh-huh' or 'yup!'?

Well that was how I felt when watching 'Jenny' go through her diagnosis.

I really want to commend Melissa Bergland (who plays Jenny) on her very convincing and 'life like' portrayal of emotions felt when you learn that you might need genetic testing for a horrible inherited cancer gene that is prominent in your family.

It was so good to see the process and emotions felt from the time you undergo genetic testing, to waiting anxiously for 6 weeks for the results to come back, to meeting with genetic counsellors, to meeting with surgeons, to having 'that talk' with your family, to having the surgery, and to the grief that is felt after you lose a part of yourself.

While I don't have the BRCA gene, I do have the FAP gene- a cancer causing inherited condition.

I remember when 'Jenny' was first told that she did indeed have the gene, there were friends on facebook that were complaining about how 'over the top' or 'how exaggerated' the feelings/questions and emotions expressed were.

But you know what?

That really made me quite angry.

People who haven't had to go through the torment of learning you could have this inherited cancer condition really have no idea of the emotions or thoughts that race through your mind.

I fired up and said how accurate the portrayal was and so relatable as I HAVE BEEN THERE, I have asked those questions, felt those emotions and had "that talk" with my family.

When we first learned of FAP:


My dad and I at my wedding 24.07.10

I remember when I first learnt that this inherited cancer causing disease was in our family- it was a week after my wedding (2010) and my dad called an "urgent family meeting".

He broke the news that he had terminal bowel cancer and that his form was caused by a condition called FAP that is a rare inherited disease and that we would all need to be tested at some stage down the track.

I remember looking around the table at my dad who looked so scared, and to my siblings whom some were trying to comprehend what just happened and the younger ones who didn't quite understand what was happening.

I remember my dad looking at me accross the table, squeezed my hand and mouthed "it will all be okay Pumpkin".

I was 19 at the time and my paternal siblings (then) ranged from 17, 15, 13, 11, 9, and the youngest was 8.

Dad dismissed the kids from the table as he wanted to chat to me and my husband alone and he said he had been speaking with his doctors about the symptoms I was already showing and it was suggested that I get tested ASAP.

The getting tested/diagnosis process:

I went for the genetic test that following week, which was a blood test and waited anxiously over the next 6 weeks for the results to come back.

That day came and I went into the appointment with a feeling in my gut that I was about to get the news that we dreaded but kind of prepared myself for the worst.

It was confirmed I too had FAP and the geneticist went over what happens next, what having FAP will mean for me and my husband, and what it would mean going forward.

The following week I had my first colonoscopy and gastroscopy (boy was that a first-time experience I won't be forgetting in a hurry) and a couple of weeks later it was confirmed that there was large polyp growth in my bowel and rectum which had spread to my stomach, duodenum, GI tract within 6 months.

I then had to have appointments with OBGYN and fertility specialists to talk about the future possibility of having a family and what we wanted to do as FAP is a 50/50 chance of being passed on. We went over plans of doing IVF where they can screen each embryo for FAP and also met with colorectal surgeons to discuss surgery options.

Initially it was thought that my case plan could be loosely based on my dad's history in the sense that he was 39 when he was diagnosed with FAP/terminal bowel cancer and that I too could have the 'late onset' which would mean delaying surgery until I was around 26-30... this meant I had 7-11 years to start a family, I was in no rush....

Then in 2012 my whole world was turned upside down..... 


My dad and siblings at my wedding

In march (on the 10th) I celebrated my 21st birthday and on the 11th my dad celebrated his 41st birthday. The following day we were told that he doesn't have much longer to live it could be a day or it could be a week. That night he passed away at around 3am the following morning.

Then in October on the 8th I had my routine 6 monthly colonoscopy and two days later on the 10th had a laparoscopy, hysteroscopy and cystoscopy and subsequent pelvic surgeries where it was confirmed I had severe stage IV endometriosis and due to the level of damage was placed in a medically induced menopause for 6 months while my body tried to recover.

A month after the colonoscopy, the test results of the biopsies of my colon returned and showed that my bowel was beginning to show early signs of turning into bowel cancer and that I only had months to have my entire bowel removed before the cancer fully turned and spread.

I was struggling with the news and tried to keep it to just my husband and myself as I didn't want to burden my family who were still grieving the loss of my dad, being the first Christmas without him and not to ruin anyone's Christmas I bottled it all up.

Inside I was going through the range of emotions there was:
*Anger- Why me?
*Denial- "I don't need this surgery, it will all be fine"
*Isolation- I just wanted to do it on my own without any help
*Fear- the fear that my life would be over and that I should just run away

What made it hard was when I eventually did decide to tell family about the diagnosis and impeding surgery, it was about 1 month before it was all due to happen.

Most were angry at me that I kept it from then, but there were the remainder that felt that "the surgery was uncessesary" or that "it is too drastic surely there is a better option, go get a second opinion".

But the reality was I could get my bowel removed now BEFORE it had turned into cancer OR wait until the cancer turns, have my bowel removed and hope that it was caught and removed early enough.

I felt that it was better to be preventative then to be sorry- and I knew just how 'Jenny' felt. I even cried with her, because it was that real and too close to home for me- that I felt like the show just "got" me.

The grief experienced when losing a part of yourself:


This was me hours after my surgery, (I just got out of recovery and was in ICU)

After Jen's surgery there was an episode where she grieved for what she lost-her boobs... now some reading this might be thinking "c'mon that is just ridiculous grieving over losing your boobs".

But would you believe me if I said after my surgery I grieved over the loss of my bowel?.... because I did.

I know it probably sounds weird and gross to be sad about losing your bowel, but it was that I felt a part of me was missing (although literally was) that with it I felt like I lost my independence, I grieved for the loss of my dad, and I threw the biggest bloody self pity party I ever have had. It was so emotional and such an ordeal that I had to learn a new way of what my life would be like and it was a lot to process and adapt with.

Mostly it was hard to adapt as for 21 years if I needed to 'do a number 2' I would go to the toilet and do my business, but with no longer having my large bowel I had to adapt to the idea and thought that I would essentially be going 'number 2' 24/7. 

Although it has been a few years now since my initial diagnosis of FAP or almost 18 months since my surgery, those emotions are still there.

Thank you to the writers and to Melissa Bergland....

So I thank the writers of this latest season of Winners & Losers for helping to show the real side of learning what it is like to go through genetic testing and preventative surgery, and to help people like me feel like someone simply 'gets them'.

Thanks again Melissa Bergland for your accurate portrayal of the emotions experienced.

Ostomistically Yours,
Talya

P.S has there been a show that you could strongly relate to? If so leave a comment below of the show and what made you feel so relatable to it.

Where to get help:

Like my family, if FAP is something that you are affected by or wanting some more information and support you can contact the Cancer Council who have information that can help you, and also has a heridetary cancer register that reminds you when you are due for your next colonoscopy. Find more information on FAP via their website.

Like the Gross Family, many Australians are affected by Breast Cancer.If you or someone you care about has recently been diagnosed with breast cancer, contact Breast Cancer Network Australia (BCNA) for a My Journey Kit, a free information resource for newly diagnosed women - 1800 500 258 or www.bcna.org.au.

 

 
Posted by: Talya AT 08:42 am   |  Permalink   |  Email
Facebook
Twitter
Google+
LinkedIn
Email
Add to favorites


~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

FREE Pattern

With thanks to Harley B for this
FREE pattern. Full tutorial is on
my blog
. Have fun creating!

Pattern ©Harley B Handmade 

 Latest Posts 
 Categories 

Have you heard about our new eZine? CLICK HERE to learn more!

 

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.

Copyright © 2017 Feeling Ostomistic. All Rights Reserved. Logo by Made by KaleWeb Design by SiteFresh