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.
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!!!
Friday, February 09 2018
I have had the pleasure of connecting with some incredible ostomates over the years, even had the chance to interview and chat with them for my magazine, which is always a great privilege. Some have even become great friends too.
Last year I was honoured when Krystal Miller, who is an Aussie ostomate/advocate/IBD warrior and blogger more famously and belovedly known as Bag Lady Mama online, allowed me to interview her for my magazine. She was the cover ostomate for issue 2 and allowed me to get down and deep with my readers, and had a no filter no question off limits type interview.
Ostomyconnection.com reached out after the issue went live and asked us if we wouldn't mind if the interview was republished and edited to suit the readership and the site.
So last month I opened up my inbox to see the latest interview went live on their site. I was so excited to see how many were sharing the article around social media and how many loved the interview.
As a writer, or maybe it is just me, I tend to doubt myself A LOT - I mean constantly - so I always worry that people won't like what I have written or that it wouldn't be read/enjoyed.
I saw within a couple of days there'd been something like 888 shares, this gave me this huge smile and sense of "maybe I am doing something right after all" but to know so many liked it really made me so proud. I think I used the term 'proud as punch' on twitter, but I honestly am.
Of course I know my interview wouldn't have been what it was if it weren't for my wonderful interviewee, Krystal.
If you want to read the interview on OstomyConnection the link is here.
5 years ago I took a chance on myself and started writing about life with an ostomy, and I am just so grateful to the opportunities and people I have met along the way.
P.S I have another interview/article on another Aussie ostomate, Laura Zapulla who blogs at stomalicious, talking about how she has inspired and shown ostomates that you can have bag will travel and that having an ostomy doesn't stop you from living the life you are able to. She recently moved abroad which is a lifelong dream. So I am excited to share that interview soon. Laura has shared articles for me in my magazine about travel with an ostomy too.
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 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!
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, November 26 2017
Hi and welcome to the first issue of the Ostomistic Life eZine prizes. Please find below some giveaways that might be of interest to you or if they are of interest to a friend please feel free to refer them to this page.
Prizes - up for grabs
#1. WIN a cuddly colon pack from iheartguts!
COMPETITION ENDS: 27th DECEMBER 2017 @ 11:59PM AEST (SYDNEY)
You must comment with a valid email (only I can see your email, it isn't publicly displayed) otherwise we can't contact you if you win.
If you have issues commenting, email your entry via the contact form on the site and when I am able to I will post your comment for you (note I am not always available at the computer to post your entry, please be patient, you'll receive a reply email when I see your email and are uploading your entry... so please be patient as I am dealing with my own health issues each day too).
Thank you iheartguts for your support
Best of luck and I look forward to reading your entries,
We also have a $25 smudge creative voucher up for grabs too!
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.
Saturday, September 16 2017
Is it only me who feels like the last year has been a complete blur? I know this is how it feels for me! I started writing this post back in 2015, then wrote more a year ago but only now have I finished it. I know it is long, I am sorry, but excitedly it was something that took time to write and unfold. I am not writing this as a brag post, merely sharing the process and how we got to building.
12 months ago we got given the keys to our first home... I remember this day so well, as if it were only yesterday. Gosh, that year has gone so fast, crazy!
12 months ago I didn't even think I would be here a year on to celebrate!
We finally were getting our house, a house that we worked hard and sacrificed over years to get, the house that I thought I wouldn't be alive to see. It was a massive goal and dream of mine (well, ours) to have our own home.
I know a lot of people have judged us for "not really doing it hard " when we were able to build a house and loved making up rumours that we were rich, but we weren't and aren't flushed with cash by any means at all. We saved and sacrificed and worked hard over years to get our own home and we had our fair share of setpacks and hardships during those years, but we never gave up hope.
I have copped a lot of flack on my blog and my facebook page about building and buying our house, I have been told I am a fraud, I have been on the end of horrible jealousy and judgement when inviting people into our home.
While I acknowledge that yes I am fortunate to have my own house, I really don't deserve the vitriol and to be made to feel ashamed of having my house or that I could achieve something that I have always dreamed of doing which was to be a first home owner.
I acknowledge that it is very unaffordable to live in places such as Sydney or Melbourne or Brisbane and it is harder for first home buyers to afford their own house. We live in an area of rural NSW where house prices are a fraction compared with those in the bigger cities.
So this is not a brag post in anyway, it is a post that showed our story to how we remained hopeful that one day we would be lucky enough to be home owners. A story of how we eventually got to something we talked about for years. A story that I want to share of our house and how it came to be....
It was cheaper to build a house than buy one, but it doesn't mean we aren't still struggling each week to make ends meet. I still don't have any life insurance and still haven't gotten my super out, we are still drowning in over $15k in credit card debt.
But out decision to have our own house came down to several factors:
How we got here:
We would apply for a homeloan every 6 or so months since early 2010 and usually would be declined and told to come back again in 6 months and try again.
We were fortunate that with Russell's income, we had worked off some of our debts to look more appealing, the little we had saved over the years and the low interest rates meant that the banks were willing to offer us a homeloan, we weren't even expecting a yes that day, I remember we went home and we cried and hugged for hours that FINALLY we could be getting our own place.
It was a dream come true, really!
But for what we needed there wasn't anything in our budget that didn't require a lot of work and rennovations which was money and stress we couldn't afford. Also, because Russ was still on his L plates or his learner's license we were more or less confined to living within walking or riding distance to work, which limited the area we could look at.
We also wanted a house that was:
If we were lucky to find something that ticked most of the boxes it still needed a lot of work done.
I know it sounds like surely a lot of places would easily fit our budget, but with only a budget of $350-390k our options really were limited to:
Deciding to build over buying an established house:
We had mostly given up all hope of having our own home, then the bank manager said these 5 words: "have you thought about building?" and it changed everything. Yes, we had thought about building and No, we didn't think it were possible based on quotes we had years ago the house cost more than our entire budget!
We had always hoped to move out of Coffs at some point and preferably would move to Woolgoolga. We had always felt Woopi felt more like home for us and Coffs was just far too busy, noisy and crowded for our likes. It was close enough to Coffs if we needed doctors or work but far enough away. It is only around 20km north of Coffs Harbour.
When we looked into land, stand alone house costs to build or house and land packages in Woolgoolga (and surrounds) we noticed that the land outside of Woopi in older beachside towns/suburbs was cheaper too approx $200-300k difference in price than in Woopi but only 5km away.
Russ was keen on the move too and I told him he wouldn't move until he had his P's, so he became more committed and took up driving lessons and actually would drive most places to get his confidence up. Excitedly he got his P's first go in June last year (2016), I cried tears of joy and relief and was so proud... been a big year for milestones for us both!
We found this perfect house and land package that fitted our budget perfectly that we drove out to Woolgoolga that next day to enquire. We got to the real estate office and told that the contracts were exchanged earlier that day and that it was now off the market.
I felt a bit bummed out, it was the last available block in the estate, I felt like the hope I had for our future was gone.
But, alas, there was hope again:
On the drive back to home (Coffs) I called into the display home for the builder the earlier package was from and wandered inside. I told the salesman we were interested in the property that was sold earlier that day and if he knew of any other developments coming up that we could secure something early to avoid missing out again.
He replied: "I think I have something for you", feeling hope returning he ushered us to have a seat at his desk. He pulled out the estate plans and circled LOT 14, he said "a block has just become available today after a couple pulled out due to finance falling through, it is double the size of the one you were keen on for a fraction of the price. It is in the first stage release and building can commence in the New Year".
I was so surprised when the builder said the house could be built for $235k! I almost fell off my chair. It included rendering the house and we opted to get airconditioning installed post build as we ran out of money in the budget initially. We had to pay for extras like fencing, tiles on the outside patio, landscaping, turf etc.
It was 16 September 2015, (year to date later we got the keys and moved in) I was due to start chemo in the coming weeks and not knowing how long I had to live, we wanted to do whatever it took to secure this block and start the build, so we could move in the following year and thus ticking off another life goal of ours.
I looked at Russ and asked him if it felt right with him and he was definitely keen, so keen he handed me his credit card. We handed over the deposit they needed which was only $1k - and we just put it on the credit card so we didn't miss out.... and so the process began!
I think the sales person thought I was nuts for opting to build a house while undergoing chemo.
But you know what, I think the build was the one thing that helped me to get through chemo - knowing there was something so exciting to look forward to- it became the best part of my week driving out to check the house progress.
Which brings us to 12 months ago today!
The house was 3 months behind schedule which meant that it was 3 additional months we hadn't quite budgeted for with the additional rent and were struggling. We were paying rent of $375 a week plus the mortgage on a house we weren't even living in, and I was so stressed trying to pay all the bills and afford to eat that we added everything to the credit cards (which we are now drowning in debt to repay and get on our feet).
But the day for final inspection and key handover was finally here, after being pushed back weeks and even days that same week, Friday September 16th had arrived!
We had to be out at the house by 7am sharp ready to do the handover, Russ was having to leave for work by 8am and our furniture pieces (spare bed, lounge and outdoor setting) were due to be delivered at 8am too, the fridge and dishwasher would arrive at some point that morning too. It was absolutley pouring, so much rain and very wet and muddy.
When Russ left, it was just me at the house all day without a car as he took the car to work. I remember just walking around the house all day just feeling so surreal that this was actually ours. Everything looked so new and shiny and was too perfect to live in, I was scared to make a mess. That new house smell too, it felt like I were on holidays.
The builder gifted us a picnic hamper and wine, which came in handy as we hadn't thought as far ahead about plates/cups/cutlery! Was a very thoughtful and unexpected gift.
Wasn't long and I scratched the wall and the place felt like home.
Our first night in our own home:
That night we ate pizza out the back on the patio on the new outdoor setting (was our only table setting for a fortnight) using the picnic hamper the builder left as a gift for us, and we toasted to our first night in our house drinking homebrand pineapple fizzy!
We slept on the spare bed that had arrived earlier that day and I never stepped foot in the old house again.
Never have I ever felt more at home before, but here I feel so happy and we truly love it here. It is so quiet compared to where we lived which was on the highway in Coffs Harbour at one of the busiest traffic intersections.
I feel healthier in this house too, which sounds strange to say as I am dying from cancer. But, the old house I think was making me sicker than I was already as the house leaked/flooded everytime it rained, normally in winter I struggled to breathe and my asthma is horrid - this winter I wasn't in hospital once! It is normally my second home in winter as I can't breathe. Could be there isn't the added pollutants of the traffic too here.
We just love it here!
It is only 17 minutes for Russ to drive to work of a morning and after he got used to the routine of driving of a morning instead of just walking or riding his bike he was fine. He is a lot happier here too.
Woolgoolga was where Russ called home for most of his life, he said it feels great being back.
The town is so welcoming and kind, everyone is always saying hi and smiling, kids you hear laughing and playing in their backyards, they too seem happy which makes you happy too knowing others are happy.
But the 5 best things about finally having our own home is:
It was a long road to get here, so many times we almost gave up along the way thinking that it would never happen. Never give up on a dream.
I had some people when we said we were going to build say to me "but you're dying, what is the point really?". How I saw it, was that no matter what my prognosis is, Russ still needs somewhere to live.... but why should I give up hope on seeing a dream I have always hoped to come true just because I won't have a long life. I know it is hard at times to understand why, but everyday that I am alive I want to live a life I love and that I am proud of... just because I am dying doesn't mean I stop wanting to live or to achieve my heart's desires... dying just made me want to move a lot of things along earlier than expected.
Please keep an eye out for more posts I am writing, I am catching up on over a years worth of posts. But if you want to ask advice and you haven't been able to find it on my blog feel free to contact me or check out my facebook page too as I often blog on there too.
P.s if you read this far, thank you! Russ and I are working on some more posts about the build and advice for others just lessons we learned along the way, so keep an eye out!
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.
Sunday, April 09 2017
One thing that I have noticed time and time again since I have been sick and spending a lot of time in bed, is that I often felt uninspired and unmotivated. I feel if I wake up happy or feeling somewhat inspired I usually have more energy to tackle the day.
It all started when I was having chemo, I was so sick from chemo that I spent almost 6 days out of 7 in bed and feeling like absolute shit house. My room didn't inspire me at all, I had a beautiful and comfy bed (a must when you're sick) but as we were renting hubby was reluctant to let me make the room my own. We knew we would eventually be moving house and it was just more things to have to move.
So in June I stopped treatment and entered palliative care.
A week or so later I went into pillow talk and my brief was "I need a quilt cover that will inspire me, motivate me but make me feel happy". I found the perfect quilt with the thanks to a sales assistant, who was undergoing chemo herself at the time and she really understood how important it was for me. I wrote away thanking her and Pillow talk HQ.
It has been 6 months now since we moved house and aside from the quilt and a print on the wall, it still felt like I was missing a little bit more. I had a bed side that felt so clinical and reminded me of being sick every time I woke up or rolled over, it was covered with needle bins from my clexane or boxes and sheets of tablets strewn over. It really reminded me every day that I was sick, and it had really gotten me into a funk of late.
So I had been planning a little bedside table makeover for a while, well had talked about it.
It is school holidays and 2 of my siblings (Macka 14, Carson 12) came up to help me do things around the house, so we decided now was the time to makeover my bedside table but also my bathroom vanity.
So I am sure it ended up being the most memorable house clean or bedroom makeover they've ever experienced!
We emptied all of the contents off my bedside table into a basket to go under the bedside table for ease of access, then we dusted it down and went about the house finding items I had been collecting or already had.
Some of the items had been found on clearance or at a cheap price.
So I found some books on the bookshelf that I got for Christmas and have been meaning to read, and from all the images I have seen of "pretty bedside table stylings" it usually has books stacked on. The marble canister is good for hiding things like remotes for the fan, tablet sheets or jewellery.
My brother said it had to have a necklace in there too.
So this is the after, and while I am no interior designer, I am feeling pretty proud of how this looks... and I don't feel like I am reminded of being sick everytime I roll over.
So now the memorable (and humiliating) part to the story....
The basket wasn't fitting in the cupboard when we knew it should and was as if something was blocking it. The door was closing but was still ajar.
My sister reaches behind the basket and pulls out a red dildo (I hadn't seen it in about 5 years and didn't care for it) so I had no idea that it was in there, so my face I assume was as red as the adult toy.
I still feel so embarrased, haven't felt so humiliated in a long time, but it will be memorable story to tell in many years time or after I am gone. I did try to say it wasn't mine, they laughed and said "what it is Russell's?" which had them even more confused when I said it wasn't... how embarrassing indeed!!
"Hey, remember that time at Talya's when we were cleaning her room and found a giant red dildo in her cupboard".
I can now pass on knowing at least I have left them with one solid and hilarious memory.
Note to self: KNOW where you have hidden such toys, preferably in a safe place no one will EVER find again.
Sunday, March 05 2017
It is my birthday in 5 days and I am struggling with it, this is the first birthday in 5 years I have wanted to celebrate it. I am having a birthday of my dreams with items on my bucket list e.g enjoy a cocktail again, have a high tea for my birthday, do a flower crown workshop. It was meant to be a surprise vow renewal, but Russ shut that idea down quick smart.... he still claims to hope I will somehow miraculously make it to our 10 year in 2020.
I know it sounds weird that this is the first birthday in 5 years that I have wanted to celebrate, even though that has its own rollercoaster of emotions to accompany it.
This birthday is my 26th birthday but it is also very, very likely to be my last.
For the latter reason, I tried to put aside my issues and feelings to try and have the best birthday I possibly could not only for myself as I feel I need to be shown I am loved and that I matter lately (that is a whole story for another time) but I also knew that THIS was important for my family and friends.
I was told last month that "I don't understand what the issue is with your birthday, you are the only one feeling this way".
It kind of made me feel a little angry that my feelings weren't valid and that I should just suck it up, but this isn't that easy.
You see my birthday was always something I shared with my dad and we would always do a combined birthday, my birthday was the 10th and his the 11th. It was always precious moments I shared with him.
Why I find my birthday hard ☟☟☟☟
It was March 10th, 2012 when he actually started dying. He was terminal with cancer, but that day - my birthday - was the day he started his dying process.
It was also my 21st birthday.
I had this whole day planned, spent over $3000 on it and family were travelling all over for the day mostly because it was my birthday but a big part of it was they knew it very well would be the last time they would see my dad. I knew that, they knew that, he knew that.
So that morning I arrived at 7am to my dad's house to be greeted by my nan who said "He doesn't want you to know this, but he probably won't make it through the day". I went in to see my dad and to sit with him. He looked at me and said "you f$cking know don't you?" and he started yelling at me. I knew this was because he was frustrated, he felt like he had lost his independance and the one request he had to everyone was to not ruin my birthday by telling me, he was so selfish that he wanted his daughter to have a great 21st birthday, but he was angry.
I was so upset I jumped back in the car and drove back home to drive back ready for the party. It was a 3-4 hour round trip and I used the excuse I forgot my outfit (which I did). I drove the whole way crying, shaking and at one point pulling over because I was having an anxiety attack and couldn't see. I wasn't alone, I had Russ with me who was talking reason to me.
I had to get all my tears out before I returned to see him again, he got angry if people cried and gave him pity so you had to hold it in or if you felt you couldn't he didn't want you visiting.
So I got back to his place, I was eager to cancel the party because I wanted to stay with him and do something different.... but he wouldn't let me. He didn't want me to miss out on my birthday and he tried his best to get there but sadly he couldn't.
I understood but boy it hurt.
I got to my party and felt so guilty, I felt like I was the worst person in the world and that everyone would be judging me for being there instead of with him. I made an appearance and snuck outside and just cried for ages. My best friend came looking for me, she had a drink in her hand and she told me to take my time. I had a couple of drinks of liquid courage and went back in to face everyone.
I had a few more drinks and started to loosen up, I started to dance and had fun, I was surprised the DJ knew all the songs to play and I was having such a good time.
Then it hit me, I felt the guilt again and then I started crying all over again.
Midnight came and the venue needed to close and I headed to dad's where I was meant to spend the night but knowing he needed his rest my friend let Russ and I stay there. He was waiting up for me and gave me my present, it was this beautiful silver heart bookmark engraved for my birthday.
He proceeded to tell me that he was texting the DJ all night the songs and he was telling my dad how I was, he knew already that I disappeared early in the night and was pretty upset but I tried my best to have a good night.
Next day was his birthday and we sang happy birthday via webcam as his room was too small with all the hospital equipment to fit over 20 of us. He managed to get out of bed that day and walk around with assistance, and I thought maybe he wasn't dying afterall.
Later that night it was only Russ, my brother, dads partner and I that were there when his breathing slowed right down that I thought it would stop and he was losing consciousness. We called the ambulance and I thought he was going to die. He held my hand and talked to me. He told me he was sorry and that he was proud of me.
When the ambulance officers came they told us to make ourselves familiar with his end of life wishes and to have the plan at hand, knowing when the time comes we weren't to do anything as he was DNR.
The next day I was having severe endometriosis pain and realised I had no pain meds with me and needed to drive home, as Russ didn't drive I had no way of getting back to dads so went home to rest. I got the call to say the doctor had been and they said he might have a day or a few days but definitely need to get everyone to say their goodbyes.
He died overnight, getting the call at 4am and jumped straight in the car and drove down.
He had always said he wanted to make it to at least see his oldest turn 21.
Why I struggled since to want a birthday ☟☟☟☟
But each year since, I would get rather depressed leading up to it. I had a lot of guilt and I felt traumatised from the events around my 21st birthday and that my birthday never felt the same, I felt like I was missing a piece of me.
So I decided not to celebrate my birthday and would use this time to go away with Russ somewhere that I could just escape everything and everyone, I know it is selfish but I really can't cope with the overwhelm of feelings. But it is also because I just can't cope with this feelings, so I avoid them, I am in denial that I need to.
Fast forward to this year, after the suggestion of family they felt that I needed to do this for them, so I have been trying a lot to make this a memorable time for them and hopefully myself, but it is hard when everytime I feel a little excited I then feel this massive overwhelm of guilt and I start vomiting. I can't help but hate myself for trying to want a good time when these feelings keep coming back.
I know no one understands why this time of year isn't easy for me, but it is so hard... it is hard to not feel survivors guilt or that I shouldn't be happy so close to his days.
I am trying my best but I am also struggling.
So I am stressed, I have $800 worth of things needing to be paid for before Friday. I applied weeks ago for a special terminal illness grant to be approved as a dying wish and still haven't heard back even though Russ has sent numerous emails. All the vendors demanding their monies and I am so upset that it won't be the perfect day I dreamed of. I have the cake $200, food at the venue $240 or $6/head and the flower crown workshops of $400 ($20/head). I know guests are paying for their own cocktail high tea in lieu of gifts ($35/head) as there was no way I could afford that too.
Didn't help that last week my cake maker pulled out and had to find a new one, which I am loving the cake.
I just worry I won't have enough time to wrangle money together if they don't let me know ASAP an outcome, I need to have time to either find things to sell or convince Russ to use one of the credit cards which means also getting the bank's approval as it will affect the outcome of our homeloan review in the coming months.
Besides, Tuesday I have an MRI and that has me rather anxious and worried.... just keep asking them to keep the results until after my birthday...
I just want to try and have one LAST memorable, uneventful, drama free birthday! Is it too much to ask of? BUT wish me luck, please, that the rest of this week goes smoothly!
So if you have heard me talk about why I am struggling leading up to my birthday, this might explain it all! But it is a comfort knowing that I will see him soon, life hasn't been the same since.
I miss dad so much ❤
p.s pretty keen for my first drink in 5 years, just hoping it doesn't trigger a pancreatitis attack or interfere too much with my medications... drink of choice is a fruit tingle
Saturday, March 04 2017
A year ago I was in hospital in Sydney recovering from major surgery, when some 6 weeks later I was being discharged and ready to head home. It was a 8 hour trip home and my shoes went missing, so I only had my black slippers and I had hoped we weren't stopping anywhere.
Turns out we stopped at not one but two RSL clubs for lunch, the first was full so we drove until we got to Karuah RSL club... so it was embarrassing! My uncle that day drove 16 hours to come and get me and bring me home, what a legend!
As I was preparing to be discharged I got the phone call to say that my little nephew had been born. His poor mum had such a long labour with him and I was relieved when the news came that both mum and bub were safe and healthy. I arranged to stop in on the way home to see my nephew and meet him for the very first time.
I was the first of his many aunts and uncles to meet him and I got a cuddle with him. He was absolutley precious. I felt a special bond with him that day that I could have sworn he smiled at me.
Over the course of the past year, I got to have many more cuddles with him. Each time he smiled at me and each time my heart felt like it was breaking, as I just didn't know how many more hugs I would get or if I would get to see any of his milestones. I cherished every minute I did have with him.
So when his first birthday was approaching, I was nagging his parents back in December with "have you thought of a theme yet", I was met with "His birthday is still 3 months away yet, we have plenty of time".
But I didn't know if I did.
I worried about missing his birthday or if I suddenly got too ill and was unable to make the day or if I would even be alive for his birthday... it is all very unsure at times.
When you are living with terminal illness, everyday you do wake up is a surprise, so I have been so determined to make sure I am prepared and not leaving anything unfinished.... so for me I needed to feel safe in that the invites were designed and printed and that I had contributed to the day.
So January came around and I was asked to design the invitations and that it was a construction theme. Well, boy did I have fun! I wanted it to be fun yet sophisticated but not too cheesy. I wanted to add a photo of him smiling, his smile and laugh is infectious and it just makes you feel so happy.
I also designed some other wares for the party (various signs and what not).
Being involved in the planning of the birthday and contributing meant a huge deal to me. It is my fear that I will die and be forgotten or that Leo would grow up and not remember me. I cry tears of despair and frustration often, about the fact that I would miss so much of seeing him grow up. It's not just him but also my siblings that I am upset about missing out on things, it is missing out on everything and missing major milestones like weddings, graduations or first child....
So I had hoped that looking back on the day Leo could be told "Your Aunt Talya designed your invitations" and that he would remember from photos that I was a part of that day.
Don't get me wrong, I'm not setting out to make his first birthday all about me, but just sharing how I feel facing terminal illness and participating in milestones knowing the ones I will miss. Maybe documenting how I feel might help someone else who is facing a similar situation to know they aren't alone in their feelings.
On the day:
We arrived around 10am, I was a little late as my stoma that day decided it was going to misbehave and leak.
I was really impressed with how authentic the setting out of the birthday looked - true to a construction themed birthday.
There were construction signs and barriers, there was a wheelbarrow for the gifts with a sign I made that said "dump your gifts here", there was a table with a sign alerting people to a hard hat for people to sign as a keepsake momento of his first birthday, there was a lovingly made (bu his mum) construction cake which he devoured and loved, and he was even wearing a kids sized fluro work shirt too!
One of my memories of the day was when Leo stood and danced and I saw for the first time him taking steps. I won't forget how much fun he had with the cake, he even was lucky enough to have 2 cakes (one was a cake smash, a family tradition) and there was cake everywhere.
I struggled for months thinking of a gift for his first birthday, knowing full well that he would get a lot of toys, I felt it needed to be something that was unique and precious.
I decided on getting him a star, it is in his constellation (Pices) and it is meant to be able to be seen from his house. I named the star "Sempiterno Leo" which translates to "Leo Everlasting" in Latin. I wanted his gift to be something he could always feel a connection with me when he saw the star, especially as I love star gazing and astronomy.
Besides, how many 1 year olds can say they have their own star!
I am trying my best this year to really live and make the most out of each day I am given as I just don't know if it'll be my last.
Leo, thank you for the wonderful year of smiles and memories. I am so proud to be your Aunt and I know that you have a whole tribe of people here to support you and protect you through life. No matter what throughout your life always know how much you are loved, how important you are to so many people and that you are never alone. Know I love you a lot and will always be looking out for you.
To his parents Max and Tahli, Thank you for really letting me be involved in his life and for helping with his birthday. It truly meant so much to me and helped with the guilt I was feeling for missing out on future milestones in his life. You have raised an incredibly bubbly and gorgeous son and I am proud of how great of parents you are to him. He is the most happiest baby I have ever seen and I am so happy he came into our lives. Never doubt yourselves, you are doing great.