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Feeling Ostomistic
Saturday, April 21 2018

Disclaimer: This blog post contains spoiler alerts for Irreplacable You and discusses themes around Anticipatory Grief and cancer.

I spend a lot of my time watching TV shows or movies online via netflix, that it is often the only way I can try to escape my surroundings or my reality faced. Sometimes you come across a doozy of a show that has you wondering how you could get back those wasted 90 minutes of your life; other times you stumble across the goods.... but then there are times where you start to really get into a show only to learn that it is actually about cancer, and when you're trying to escape your cancer riddled reality, often these shows just aren't what the Doctor ordered when he said to "Netflix and chill".

Sometimes it could be handy if a show came with a disclaimer/warning, similar to that of the warnings put in place in Australian media when warning that there may be footage/images/voice recordings of deceased Indigenous Australians which may cause distress for viewers:
 "WARNING: Aboriginal and Torres Strait Islander viewers are warned that the following program may contain images and voices of deceased persons.” (ABC) This source also explains the cultural signifigance and meaning behind this practice too. 

With this in mind, there should be something similar to be considered when it comes to TV shows or movies that involve cancer, especially to the point that it may cause distress to viewers with The Australian Cancer Research Foundation stating that "most Australian's will be exposed to cancer at some stage in their life either personally or through family or friends" as sourced from "Cancer in Australia in 2017". When you consider that the Australian Cancer Council state that "1 in 2 Australian Men or Women will be diagnosed with cancer in their life before they are 85", that is a HUGE portion of the population that are exposed to cancer either inadvertly or advertly.....

So surely a duress warning is warranted after all, due to the amount of population exposed?

When a show ends up revolving around cancer or the premise of dying, it can be rather emotional watching it and if you're in a bad headspace mentally like I have been lately, you just end up bawling for hours on end and can sometimes lead to feeling in a funk for days if not weeks and can even unravel how well you are indeed coping with life. 

Very rarely however, I can find myself actually learning something from one of these movies or shows; which is rather surprising and unexpected when it does happens. I recently and surprisingly learned that how I have been feeling in regards to my prognosis, actually had a name!

Anticipatory Grief: The grief you experience without realising there's a name for it!

I recently stumbled upon a Netflix Original Rom-Com (romantic comedy, how it is a comedy is beyond me) called Irreplacable You, which introduced to me the term Anticipatory grief. Once I heard it, that this phrase actually had a name for it, I felt somewhat calmer about all the shit I had going on in my mind and started to get some clarity within myself. Choosing to read on may contain in spoilers of the movie, so spoiler alert friends.

But knowing about anticipatory grief made me feel normal in what I have been spending so long trying to process.

Anticipatory Grief, as presented in the movie, was in the way that Abbi (the lead, the protagonist of the story) was so caught up on being worried about how her partner (and fiance) Sam would cope after her death, that she created an online dating profile with the aim of seeking out "the right woman" whom she could ensure would have Sam's best interest at heart and that he would be okay and taken care of. Abbi was so focussed on making sure that everything was ready and prepared for that she had hoped this would make her anticipated death easier on herself and those around her.

It had the reverse effect as it made Abbi so focussed on life of her loved one's after she was gone that she lost sight of the living and the being present in the now. She alienated herself and by pushing Sam into another woman's arms, she lost him too. They did eventually rekindle their relationship and the day their wedding was planned for, it became her funeral, as she had died in the days prior.

But it really made me look long and hard at my own life.

I didn't know that there was such a term as anticipatory grief, and I hadn't realised that I had been living and navigating through it.

But once I knew that there was a name for a lot of what I have been trying to do, for the sole reason that I had died, such as:
Writing letters to my loved ones;
♕ Leaving behind memory boxes;
♕ Doing special things such as the photoshoot with my sisters as they wanted a letter and nice photos of us sisters together;
♕ trying to tidy up our finances so Russ can manage on his own and with ease;
♕ Planning my own funeral so that others could focus on their grief;
♕ or even in leaving gifts behind for future milestones I will have missed.

There have been other moments I experienced Anticipatory Grief without realising it:

I remember breaking down crying at my mum's wedding February 2017, like I mean full on hysterical tears. Everyone (all my siblings) were dancing and my mum came and sat with me and hugged me. She asked what was wrong: that was when the tears started and they wouldn't stop. I felt so guilty that I was ruining her special night with my sadness and grief, I was just so sad at the thought of all future family events and milestones I was going to miss, such as the wedding's of my siblings, and it all just got too much for me. I apologised afterwards and the following day, mum said it was okay and she acknowledged that it must be hard.

But I didn't know then that it was anticipatory grief, it also wasn't the only occasion that has thrown me for six either:
I remember tears felt for my nephew's first birthday as I was surprised I was still there to see him celebrate (was 6 months since entering palliative care), but the thought of him growing up not knowing me or knowing how much he meant to me does still upset me. For his first birthday I named a star after him, for his second birthday I got a bunch of kids books and wrote a heap of heartfelt inspirational messages inside each one, that I hope will help motivate and inspire him in the years to come.

There are so many other times too, poor Russ has had to deal with me and the various stages of my grief for so long. He sees it all and knows this stage is hard for me.... it is hard knowing that life will go on and that I will miss out on things, but I am also worried my life would have meant nothing or I would be easily forgotten, so I am trying to do memorable stuff and make a difference as I don't want to be forgotten... which is another form of anticipatory grief.

I often break down at the thought that Russ and I won't get to live out our dream of sitting on our back verandahs in our matching rocking chairs just laughing and chatting together, or we often find ourselves talking about our 10 year plan and what we will be doing without thinking and then it hits us and one of us is crying. I get upset at the thought of missing out on having a career, missing the wedding of my best friend and siblings too. I was fortunate to live to see one friend get married last November, a day I didn't think I would live to see, and we both hugged and cried so much that day she just kept saying how happy it made her that I could be there and the feeling was mutual, gah - I am crying now just remembering that powerful and emotional moment.

I must admit the thought of Russ moving on and finding love after I've gone has been on my mind a lot, but not to the extent (yet?) that I would actively seek out my replacement and set him up before I had died (like Abbi, in Irreplacable You); I know I tend to do things a little pre-emptively, but that (seeking out my own replacement) for me is a little too much. I had considered writing a letter to whomever came after me, but trying to put that pen to paper was just far too difficult everytime I have tried. What do I say or how do I begin, "so you're banging my husband and could give him a life I couldn't because my body was too stupid go ahead and have fun kids"... nah, it is too much. I want him to be happy and hope he isn't alone but at the same time I often cry at the thought that he will have a life I won't be a part of and I won't be here and it hurts thinking of him having a family and having a relationship with someone who is normal and can do normal things like walk or shower without assistance, and who isn't such a burden. I do worry about him though, if someone takes advantage of him when he is vulnerable (such as take our house from him) or his next partner doesn't understand Autism, how his mind works and just how patient you need to be at times; he says he probably won't try dating again. 

Noticing anticipatory grief in those around me:

Now that I know that it (anticipatory grief) exists and it has a name, I have been noticing it more and more in my own everyday life and pracitices. I have also been noticing the anticipatory grief that others have in their interactions or behaviours towards me.

Ways or some examples have been:
- Not inviting me to something because it was easier to exclude me than to try and accommodate me;
the list could go on but I would be here for days if I listed the experiences faced, and you'd be horrified if you knew some of the truth too.

Time for change, let's talk about Anticipatory Grief to Normalise it:

For so long I have felt guilty or ashamed for feeling grief or grieving over the loss of something due to being terminal, such as: the loss of friendships or social relationships; loss of my independence and being so reliant on Russ; loss of my ability to do normal everyday tasks such as dressing myself, showering, even walking; I know I felt grief over the loss of my bowel; grieving the loss of my connectedness to my community and feeling like I don't offer a valuable contribution to society; loss of career prospects; loss of being able to have a family and fertility.

I wished I knew then that anticipatory grief was normal and that it was what I have been feeling for all this time, it might have made accepting and acknowledging these feelings easier, rather than bottling them up because I felt like something was wrong with me for feeling how I did and feeling like it was all trivial, not realising this is a totally normal process and grief to experience.

Perhaps if people read more about anticipatory grief, they might then know to speak with a mental health professional to help work through their issues, like I currently am.

But most importantly there is nothing to feel ashamed of for feeling this grief or for grieving the life you're going to lose, it is only natural, but finding the right counsellor to help you through your issues is key. If you don't feel they are a right fit, try and search for someone who is.

Know you aren't alone and what you're feeling is completley valid, important and worthy of being acknowledged.

Posted by: Talya AT 02:25 am   |  Permalink   |  1 Comment  |  Email
Friday, January 12 2018

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

The post was:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


21-year-old me

Letter To My 21-Year-Old Self:

Talya,

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

Yes it changed your life but it saved it too.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Love,
your older and somewhat wiser self

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

 

 

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

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

amiright?


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

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

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

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

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

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

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

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

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

Let's do this!


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


My swimmers kindly gifted from Yours Clothing - LOVE them

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

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

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

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

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

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

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


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

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

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

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

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

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

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

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

#18. Try to get my pain under control:

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

☟ ☟ ☟ ☟ ☟ ☟ ☟ ☟

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

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

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

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


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

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

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

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

Posted by: Talya AT 11:23 am   |  Permalink   |  0 Comments  |  Email
Sunday, August 13 2017

It is hard to believe that it is almost 12 months since we have moved into our new house! 


Top = today a year ago; bottom = recent picture before the birds of paradise
were planted under the window shown. Behind the fence is my koi pond!

I have been so busy trying to live and love life, plus enjoying the good days, that we haven't yet completed unpacking our house and we have so much left to do. This has had me feeling rather disappointed in myself as I was really hoping to have had the house set up and finished by now. So while we have nothing planned for the next few months, I really want to focus on finishing the unpacking and working on styling the house.

Having a beautifully styled house that I am proud of is one of the things I wanted to tick off my bucket list!

The first room I want to finish is our master suite (bedroom and ensuite). I spend so much time in my bed, bedroom and ensuite, that for me it is my most used/lived in space. I really wanted the room to make me feel happy, safe, comfortable, relaxed and proud; but more importantly, I want others visiting me to feel the same sense of comfort.

I had hoped by now to be able to have afforded a full room makeover, or to be on our feet financially for that matter. We have been adding pieces to the room as our budget has allowed us over the last year, but we still have a way to go. I love a good bargain and hunting for things
on sale. I also like to use my phone or laptop to browse and compare different products/prices online. We don't have a lot of money so I need to ensure that our money is well spent.

Russ thought it would be a good idea to perhaps write a blog post as a wishlist of what we want to achieve so that in a way we can hold ourselves accountable for ticking off this goal of finishing the house, and especially our room.
 
So, this is the accountability post for completing my master bedroom and my wish list for the tropical styled things I want in it.

I promise to do an 'after' or finished/completed type post, otherwise I will share the gradual progress on social media until then!

With spending so much of my time in bed, or unable to get out to shop in person, a lot of that time is spent just browsing sites to get a clearer picture of styling/product ideas. It is always nice when companies have a good online store with stock updates that are timely and reliable. If they have social media too you can see how other customers are using their products to style and get ideas from actual users of the products. I know I browse through Fantastic Furniture and Pillow Talk online all the time (as they are two stores close to where I live), always keeping an eye out for sales or new stock. I have a few other sites that I regularly do the rounds to check for the latest products, styling ideas or latest sales (I wish the reject shop had an online store), it really does help to pass the time when you are otherwise stuck in bed.

Another way to pass the time and find inspiration is Pinterest! I only hope I can create and style a Pinterest or Instagram worthy house on a budget!

Why tropical?
I wanted to choose a tropical styling for my room as it could be a way of adding my favourite things: timber, cool white, actual greenery and more vibrant colours without these elements being too overpowering or clashing with each other. I love birds of paradise and grew up with a frangipani themed room, so tropical has always been rooted in my core. We have birds of paradise in one of our bedroom windows as well as a frangipani tree in the garden we can access via our master ensuite. A tropical room has always been a dream of mine!

Quilt:
I really wanted a quilt that was bright, fun and certain to help lift my spirits on days where I'm struggling. I wanted it to be a way to motivate me each day - 12 months on and this quilt still does all that.... I purchased the quilt from Pillow Talk (it is now unavailable) before we moved house, along with the matching print on the wall (see below). I used these two items to start my tropical themed room. I know it isn't traditionally tropical but it is as I say "contemporary tropical" or that's how I've interpreted it. The quilt means I can add pops of colours into the room without seeming untethered to the core concept.

 
My beautiful, fun, bright and happy quilt from Pillow Talk & my bed

I am hoping the quilt isn't the reason the styling of the room falls apart, so I am hoping I can make it work to pull it off! I really love this quilt especially as on the reverse side it has this nice aqua colour + it matches with my purple (fave colour) sheets, so not sure if I want to part with it. However, if necessary to better the room then I might, but it makes me feel so happy and that is my priority!

Were I to change quilt covers if I felt it (the above quilt) really wasn't a fit, I have found some others from Pillow Talk and Spotlight that I have pictured below. It is so hard to choose what one I like the most, so these are my top 10! Pics to the left are from Pillow talk and pics to the right are from spotlight respectively.


Again not sponsored, these are just my favourite choices.

Bed:
I absolutely love my bed (pictured above)!

We purchased it back in 2012 from Beds R'Us and it was looking amazing until Dusty recently decided it was in fact his clawing post (I cried, it was heartbreaking to see/hear). I had thought about upgrading our bed but my heart is too set on it. It is a king size; it is leather which is easy to clean; it is white which means ANY quilt cover looks great and that it can be suited to any theme; it is the right height for me and doesn't hurt to get in and out of like our timber bed before; and besides, it looks so elegant too!

I know Russ has thought about upgrading our king bed maybe after I die, he feels it is too pretty for a guy and too hard to keep clean because it is white, not that he wants to remove my existence from our home- just he might feel like a change, who knows? If he/we did upgrade this is one that he has his heart set on. 

I know he likes timber beds a lot (we have 2 timber beds in the spare rooms, one was his from when he was a bachelor up until we upgraded to our white bed). We were looking around Coffs recently at the different options of tropical-esque furniture and he decided he really likes the 'Toronto King Bed' from Fantastic Furniture


Toronto King Bed plus bedroom package suite from Fantastic Furniture

Something to note is it is made from Acacia wood sourced from sustainably grown plantations (which is a tick from us as we try to be environmentally conscious), but the beauty of this timber is that it would beautifully match a tropical themed room! It is a bargain at $799 with 6 years warranty too (I think Russ is all for extending our warranties from his job as a salesman), as opposed to the $3500 we paid for our current bed, so if we/he upgraded it is a nice and affordable option indeed. Felt pretty solid too.

TV Stand:
Russ had said 11 months ago that he would organise some mates to come help him mount the TV in our bedroom, I hate being a nagging wife, but sometimes nothing would get done if I didn't keep asking. Most of the time I think he isn't listening but then some days he surprises me.... like last week. 

I have been wanting the TV set up in our room so that I could watch Netflix, a movie or catch up on missed TV shows. I'm not well enough to sit out of bed for long most days, so having the TV in the room would help. I am struggling typing or holding my phone and iPad the last few months, the nerve damage from chemo and the tumours are making it painful to touch things. I try to use my iPad but it is frustrating sometimes at how small the screen is or at the lack of sound (remembering I am deaf in one ear) so it makes sense to set up the TV where I can see it comfortably.

So Russ one afternoon last week told me to stay in the lounge room as he had a surprise planned... surprise (see picture below)! He had set the TV up on top of some cheap/flimsy bookshelf from the shed. Doofus! I loved the sentiment, but I am so worried as Dusty is a climber who likes jumping on shelves. But it has been great the past week enjoying TV from the comforts of my own bed!

We have been looking into options to put the TV on. It needs to be at a height of 900mm or higher due to laying in bed and not having a clear view if any lower.

So we have found two options: We thought that a chest of drawers would give the best height plus allow for additional storage. Russ wants the tall 4 drawer as it is 150mm taller than our current set up, but aesthetically I think the 6 draw would look and fit the space better - though it is 100mm less (but TV is awkwardly watchable). The two we like are in the Toronto range from Fantastic Furniture and there is only a $100 price difference. I can't decide, but once we do we will enquire into layby options to pay it off over a set period which makes it more affordable. I know $599 or $699 respectively might not seem like a lot - but it is for us when there isn't a lot in the bank.

Chair:
I always felt awkward on days where I was bed ridden and loved ones or palliative care nurses were visiting me. They were always either standing around or sitting on the bed next to me. A friend flew up from Sydney for my birthday and while she was here I was in bed with so much pain that I was unable to get up. I ended up having to text her to say "help yourself to the kitchen" so she came in and she layed herself down beside me, we just chatted for hours (it reminded me of sleepovers from the good ol' days). But I knew we needed to organise a chair sooner rather than later. So a chair was top priroty on our list of room additions.

We needed to get a cupboard for the hallway (can never have enough storage) and Super Amart had a 'buy one get 2nd item half price', so we only paid $225 for the armchair (it all went on our G.E. interest free card)! It is the 'James' and is the same as the lounges in the living room and it is wide enough so I can sit in it comfortably - if I want to sit and read, it has big arms and is really spacious. Russ often sits there reading a book while I am sleeping, especially on my bad days, so that he can watch over me and feel he is close by. Dusty also has claimed the chair as his, so just like every other part of the house this was business-as- usual.


As a family we all love this chair!

The chair for us was a must have for the future too. There will come a point when I am declining in my health and I want people to visit me and be comfortable. Russ tells me that it is 'typical Talya behaviour - always thinking of others needs', but all I want is for people to want to visit. It is a fear that I will be dying and be alone and I don't want to die not knowing that I am loved. So this chair is important and it gets used often.

Bedside tables:
I currently have 2 x white wooden bedsides I got from Fantastic Furniture way back in 2011 that still look in new condition. I like that these are timeless and can go with any trend/style and are sturdy. With a big cupboard space I have put baskets in there filled with medications and syringe safety bins for my Clexane injections. So keeping these and using them will save on costs, which is always nice when you're styling a room on a budget.

Wall Decor:
I have one framed print of a birds of paradise that matches the quilt (pictured below), but with so many walls still bare in my room it can be mistaken as being clinical. I want to get some wooden shelving, cubes or hexagons to make a wall feature which doubles as storage to have some plants around the room and to hold other little nick-nacks.


Birds of Paradise framed print from pillow talk

When we were in Fantastic Furniture recently I stumbled across this flamingo canvas artwork (below) that has all the colours of my quilt and is keeping in with the contemporary tropical theme, Russ really liked it too, so we are hoping to get it when we can afford it. It wasn't much, around $49 from memory.

I also enlisted the help of Foote and Flame to cut out some bamboo shapes of different tropical leaves so that I can hang these around my room and make an art piece from it. I also found some cheap tropical leaves in Kmart for $3 in various sizes and styles too. I know pillow talk have some too. I am hoping on the next day Russ has off to look at placement of the wooden and artificial leaves. 

Nick-nacks:
I have been keeping an eye out over the last year for different tropical themed pieces or even nice wooden decor, and trying to nab a good bargain. I have my eye on some timber framed artwork, some timber pineapple frames and other odds and ends like fake succulents. I really want to have some fake plants around the room to fill the spaces (My thumbs aren't green and Russ is not always home). 

I know we are trying to fit a lot into such a small space and I do hope that in the end it all looks as homey and relaxing as it does in my head. I am hoping now that I have written this that it holds Russ and I accountable for getting our house sorted. I know 12 months ago I didn't think I would still be here today and I know the outlook isn't too great for the next year, but I just really want to feel calm knowing my house is in order.... literally and figuratively! I want to not feel anxious over if I have done enough or if people are judging me.

I am really wanting my room to be my tropical escape as I won't have the ability to travel there myself I want to bring it to me.

I am also not an interior designer or stylist, so I don't know if the mood board I have in my noggin' is going to work, I will just have to see won't I!

If you know of any tropical themed wares over the coming weeks and months feel free to let me know so I can check them out. I am really wanting to have my room finished by Christmas/New Year at the latest. Plenty of time I know, but if the last 12 months have taught me anything it is that Russ is a snail (when it comes to getting things done) and time certainly does flies by!

So tell me, do you have a themed/styled room or house? Which room of your house is your favourite?
Comment below or join the conversation on Instagram or Facebook search @feelingostomistic or twitter @feel_ostomistic

Posted by: Talya AT 08:15 am   |  Permalink   |  0 Comments  |  Email
Thursday, July 06 2017
I know I am pretty slack when it comes to updating posts on my blog the last few months, I have been having fun microblogging over at Facebook and Instagram as it has been more convenient to do updates than to do a blog post due to my health (and sleeping 20 hours most days). If you're interested in knowing or understanding more about what goes into a single blog post and why it can take hours to do one post, the wonderful Micheala from Not Another Slippery Dip recently shared an insightful post which you can read by clicking here!

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

Background:

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

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

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

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


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

What came next:

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

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

What came next from my post was unexepected!

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

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

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

You can see the video slideshow here!

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

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


Russ loved the beatiful gesture and seeing all the different locations

Russ' response:

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

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

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

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


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

Thank you:

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

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

 

Posted by: Talya AT 08:18 pm   |  Permalink   |  2 Comments  |  Email
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

Posted by: Talya AT 08:33 am   |  Permalink   |  0 Comments  |  Email
Saturday, February 18 2017

One of the ways I got through my teenage years, was with the hope that one day I would meet my prince charming who would make me feel like a princess, his princess. I romanticised every encounter or relationship I had, always invested in that perfect rom-com moment where I fell in love and lived happily ever after.

My friends thought I was just setting myself up for disappointment and yet again heartbrake, where they would be needing to pick up the pieces and glue me back together... my friends were good like that. They also became rather protective of me too.

So fast forward to 2009 (18), where I desperately needed a laptop as mine was drowned in the (then) recent floods and was hard to keep up with the demand of uni assignments when you didn't have a laptop.

I headed into my local electronics store, walking past the door guy who looked more focussed on watching the latest movie that was showing on the massive LCD TV's that were covered with signs that made you think it was a not-to-be-missed sale, never to be repeated. I walked past the out of service vending machines and an independant ATM machine, one of those "we will charge you $2" to proceed types. I walked through the camera and telco departments when I finally found the computer department.

I wasn't sure what to do, since this was my first "big girl" purchase without a parental unit chaperone. I just stood there lost and staring at the 50+ options of laptops in front of me, confused as to what do I do next.

I wasn't standing there long when this salesman approached me. He was fairly tall, which wasn't a hard thing to notice since I am 5 foot 2", was rather skinny and wore an old set of glasses that looked to be 10 years old. He seemed shy, yet when he spoke about computers it was as if he just looked alive with passion; and there was this look in his eyes when he spoke, that you could trust what he is saying as the truth and not just a sales pitch to try and close the sale... he was really genuine and honest.

Even his attire and how he presented himself made me feel he was humble, down to earth and kind of daggy, which I liked; he didn't feel pretentious at all... just genuine what you see is what you get kind of guy and I admired that. He wore a black collared work shirt that had these weird pleats in the side with a yellow panel (I would later learn these were a massive pain in the ass to iron), the jeans he wore were a light denim in colour and he rolled the bottoms of his jeans up so they sat around his ankles.

I had this immediate sense that he cared about the customer, in a way that he didn't want you buying something you didn't need and he kept trying to talk me down from the higher end of scale laptop that I wanted but didn't necessarily need.

However, as a broke and unemployed uni student I thought I would try my luck at financing a laptop since desperate times called for desperate measures. I was falling behind in uni, so I was willing to consider any avenue possible to get a new laptop and get back on track.

So it wasn't very surprising when I was in fact declined for finance, I even went so far as to try EVERY way possible but I was out of luck.

I didn't want to leave empty handed, so I worked up the courage to ask for his number, which without hesitation refused and said something like "it's against store policy as you applied for finance if I were to take your number". I called bullshit, but he still refused.

But I was utterly confused as to why, I felt we had hit it off. We had chatted and laughed for hours while I attempted to finance the laptop, even had our own inside jokes.

There was just something that in all his honesty, that I felt was sexy in a guy... considering every guy I had met to date were douches who were either so focussed on looks and appearances, were the dangerous boy types who were forbidden (which made them more attractive), were the sporty jock types who prioritised their sports over your relationship, or the mum's boy types.... so it was rather refreshing, and a welcomed adventure when I encountered this kind, funny, considerate, nerdy and genuine guy.

But it ended there.

For the next 3 months I would try and utilise the shared computers at university and applying for credit cards or scholarships to try and help me to fund the laptop, but often I would be waiting for a long time for my turn for the computer in a line.

When I did win a scholarship at the begin of semester 2 I dreaded the thought of returning to the store and in the event that the sales guy remembered me it would be so humiliating. So I decided to dye my hair a purple/burgundy colour and to cut it really short in the hopes that he wouldn't recognise me.

I felt so confident and headed into the store, meandered the recognised path towards the computer department and was rounding the corner into the IT section when he saw me. Instantly dreading this and realising it would be rude if I just pretended I didn't see him, I walked towards him and smiled.

He smiled back and said "It's Talya, right?". Muttering a few curses, I replied "Umm yes, it is". He continued by saying "I told myself if you ever returned that I would get your number, I have regretted it every day since".

So that time I actually left with my intended laptop, his number and the hope that maybe this dream of falling in love might come true afterall.

Just like any rom-com movie it isn't always smooth sailing and theres a few bumps along the way, often tragedies, that can bring two people closer together or can tear them apart... and that has been our story, one heck of an epic love story that should really become a feature film.

We started dating knowing full well that a month later I would be having my first brain surgery, which led to multiple surgies and a 3 month hospital stay and also our engagement at just 3 months together.

On our 12 month anniversary we were married, it was an intimate gathering and budget friendly, but it was also simple in the way that there was no fuss and it was a low-key affair surrounded by those we love dearly. It was a day where we wanted it to be just about us.

But we have faced our fair share of loss and stress: misscarriage; diagnosis of my dad's cancer and learning I inherited the gene; being held up at work and struggling to come to terms with anxiety and a diagnosis of borderline personality disorder; finding out that I have severe stage IV endometriosis and as a result I am unable to have children; a week later learning at 21, I have early stage bowel cancer and would need surgery to remove my bowel; months later had surgery and my first ileostomy surgery was had, survived being close to deat and learned to adapt to life with a stoma; getting severe recurrent pancreatitis rendering me in hospital for the next 12 months; discovering a large tumour where my bowel used to be; thyroid cancer and subsequent thyroidectomy, again close to dying; learned I now had another tumour that was growing rather quickly; started chemotherapy and spent more time in hospital which led to tumour needing to be removed as it was dead and my body was decaying; resuming chemo; learning I had 2 large blood clots; a new tumour discovered on my ovaries; chemo stopped and entered palliative care.

I am sitting here in tears, as I have been moreso the last 6 months, as I just don't know if Russ is going to be okay.

Russ has autism and if it has taught me anything in our relationship of 8 years is that he doesn't cope with change well. We moved house and it took me 12 months of building him up for it as change is unsettling for him, he is only just settling in with his new routine and it has been 5 months. He even had his learners for 20 years and got his p's last year and I was so incredibly proud of him, it gave him independance and took a lot of pressure off from me and meant that I can focus on my pain management and not needing to worry about driving.

He told me recently that he is so proud of himself and that he appreciated me being patient over the years to research how to help and encourage him to embrace change. I read up on autism parenting blogs to help, even though he was an adult I found some of their advice helped me.... I learned patience and to try and do things differently.

He also doesn't cope with his emotions very well, he struggles understanding what to do with them and death usually leads him to shutting himself out from the world. He doesn't know how to deal with what he is feeling and as a result can lash out or just become more recluse than he already is... I saw this when my dad died.

I have started studying counselling so I can learn coping mechanisms to teach him, I know he won't be okay as much as I wished he would be, but I am trying my best to help him.

It's rather upsetting and stressful feeling all this guilt that I have, that we have built the most incredible lives together and lived the most epic love story and it is going to come to an end. I worry about him financially and if he can manage.

He conversed with his boss yesterday about what happens in the end when he needs time to grieve what is available. He has been so worried that he might not be ready to return so quickly after my death because he has no more leave and would take leave without pay and as a result would not be able to pay the mortgage... and he has been rather anxious about all this.

So I spent so much of last night crying, because I feel guilty.

I feel guilty that he is having to worry about all this, that he has limited time to grieve before having to pull himself together to go back to working, all because I didn't have life insurance. It is one of my deepest regrets and I feel like I am irresponsible as a result. I only have under $3k in super too. Even on our homeloan the bank wouldn't cover me with insurance, 'cause terminal cancer and all the credit cards are in his name not mine so that won't even be a relief.... it is such a worry and stress.

I just hope he will have support, I imagine he will in the initial week, but I worry what will happen after that. 
I just hope he will always know how much I love him and that he will be okay financially and emotionally...
I just hope I haven't ruined his life.
I just hope he doesn't resent me for putting him through this.
I just hope that he will be happy again.
I just hope he know just how much he is loved and appreciated.
I just hope that he knows he makes me proud.

Posted by: Talya AT 12:27 pm   |  Permalink   |  0 Comments  |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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

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

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