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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
Saturday, November 11 2017

Sometimes we think that society has advanced, but then there are times that remind you that the world around us is a cruel, judgemental place filled with so much hate and anger.

I think it is time that people stopped shaming people with disabilities, especially those with "invisible" disabilities. Unfortunately not all disabilities are visible and we should be open minded and not fast to judge and be cruel.

I saw several posts online today about how a young student had flyers and posters stuck all over her car calling her lazy for parking in a disabled parking space, or that she isn't actually disabled.

This girl is undergoing treatment for cancer including radiation, but these vigilantes shamed her and made her feel guilty about her situation.

As a young female who has cancer, I know how hard it were having chemotherapy and struggling with energy to go to the shops and do mundane things like going to the bathroom. 

Due to my tumours, one is the size of a watermelon and is attached to my stomach, small bowel, both kidneys, my ribs, my liver and presses on my back, and also compresses the nerves and blood supply to my stomach, bowel and my legs too.

I have a disabled parking permit because I am unable to walk more than a few metres at the time before needing to sit and rest as the pain is too much and the pressure along with the numb legs isn't pleasant.

So I have a wheelchair and I am not ashamed of it.

My wheelchair has given my life and ability to enjoy and love life back.

But people, even family, recently said that they thought I had a wheelchair because I am lazy.

Yes I am overweight, but that isn't why I need a wheelchair.

I need a wheelchair because I have a watermelon fucking sized tumour slowly killing me through strangulation.

But hey I am just lazy arent I?

I know this issue of disability shaming is happening all too often, just people think they see something they need to be somewhat of a hero and stand up for "what's right", which they feel is belittling someone to feel less than about having a disability because it isn't a perceived acceptable disability.

But not all disabilities are visible.

AND a disability isn't just someone using a wheelchair.

If you look up the term of disability it is: a physical or mental condition that limits a person's movements, senses, or activities. It doesn't say it is limiting to those in a wheelchair.

You don't know what is going on inside another person's body, you don't know the struggles that person is facing, you don't know the shit they have had to put up with that day already due to their disability.

So before you think you HAVE to say something, remember the acronym THINK:
T - Is it true?
H - Is it hurtful?
I - Is it inspiring?
N - Is it Necessary?
K - Is it Kind?

It might feel like your responsibility to call out every person you think is abusing the system, I get it, but while it helps you and your ego to feel better, you are destroying someone else's life just to make yourself feel better. Probably think you're helping to defend people, but you are just making people with an invisible disability to shy back further into their corner feeling shame for not being as able bodied as you.

In your actions just stop and think.... is this necessary? What will it achieve?

But you want to know what my doctor says to me everytime I break down crying in his office over someone disability shaming me?

He says: "Talya, if I didn't think you deserved it I wouldn't have signed off on it.... fuck the haters", so you can see why I love my GP so much as he has my back. A doctor wouldn't just hand out a permit if you didn't deserve it.

Yes, there are people who abuse the system, but it isn't your place to think you are calling someone out.

One incident last year: Russ and I were in the car and parking in the CBD, some lady stopped and argued with us for 20 minutes over if we could park there all because my husband had P plates on his car she wouldn't believe that the permit was ours because we were young. Young people have disabilities too and they come in all shapes and sizes. 

Next time you want to shame someone, stop and think first.

If you feel you MUST do something to make yourself feel better, go and donate to charity or do something selfless for someone else. Making others feel good is a much better feeling than making yourself feel good for putting someone down.

There is so much anger and pain in the world already, let's not add to it hey.... be more kind to others.

The world needs more love and they say if we want to create change to start at home first.

Posted by: Talya AT 07:20 pm   |  Permalink   |  0 Comments  |  Email
Saturday, September 23 2017

June last year (2016), I was told I had approx 12 months to live. I then wrote a bucket list of experiences and achievements I want to do and started working my way through it all. I had so much fun living and loving life that the 12 months became a blur. It took me to learn I was dying to really start living life, ironic hey.

One thing I have always wanted was a tattoo, it was more working up the courage to do but also finding something that resonated so deeply to me. Having struggled to feel this conntectedness between ideas, I thought I might best get something custom drawn.

I approached an artist Tasha from Jubly Umph that I loved her work and asked her to create something for me that is so personal and is something that I could continue to feel inspired by everyday. She began working on sketches for me and after some tweaks we had the perfect drawing.

I was so excited when Tasha asked me to write a guest post about my experience for her blog, you can read it here. I talk about my inspiration behind the design and why a tattoo was something that meant so much to me.

When it was my birthday back in March I had some family and friends gift me money with the specific intentions it be used on a tattoo. One of my gorgeous friends Bee gave me an envelope that said "open on the day you go to have your tattoo done" and inside was some cash, I thought it was the sweetest and thoughtful gift.

So the day before I had my tattoo done I got a call to say there was an opening for the next day, I was pretty excited and incredibly nervous. Russ came with me and I am so glad that he did.

My tattooist Megan - turns out is my stoma nurses daughter, what a small world! 

I had been researching her studio and work for months, then one day I was in talking to my florist about my birthday the flower crown workshops and I bumped into Megan she gave me her card and I realised who she was and kind of strangely fangirled as her work is so good. So I had complete faith in her work, I was just nervous as I didn't know if it would hurt or not!

The day for the tattoo came, I chose to get the top of my arm done as it is a big design but also so on my bad days I can be laying on my other side and see it and be reminded of my strength.


The blank canvas

A stencil was made of the design and placed on my arm to check for placement before the outlines were done, but also to check if the scale and size was big enough. We did this a couple of times as the positioning was off, only because of a mole and scars Megan realised she could work these into my tattoo design.


The stencil the second time round

Now came the outlines, it didn't hurt as much as I thought, just like scratching really. The outline was finished, I got up to stretch my legs and to have some pain meds as I was sore from tumour pain before jumping back in the chair. I remember feeling so proud and excited! I felt on top of the world!


So proud!

Now came the next part, the colour! 

BOY DID IT FREAKING HURT!

I was doing okay until about a third of the way through and I was just bawling my eyes out. Russ was standing next to me holding my hand and I was a blubbering mess.


See! Blubbering mess, but I felt so proud at this point.

I now understand why you get it done in stages, I just felt like I was buff but I felt like a sook and was so embarrassed that I must look weak. I left and got in the car and just cried and sobbed, it hurt for a week or so afterwards too. 

Best thing to help soothe the itch is this ointment from Woolworths called Dr Pickle, it really helped to moisturise it when it was dry and helped to fight the urge to itch it too. 


Comparison of the tattoo and the artwork!

I was really happy with the tattoo and the artist really did an amazing job at bringing the artwork to life. If you wanted to see more of Megan's work you can find her on Instagram under @meganlouisebucks

It has now been 5 months and the tattoo is looking so good!

I have had a lot of compliments on it, have had a few opinions from others but at the end of the day what I choose to do with my body is my own choice and when people get too judgey I just fired back with "I am dying so who really cares HOW I choose to live out my life, STFU". I am so over comments telling me how I should live out my days. I am only trying to do what makes me happy and to squeeze a lifetimes worth of experiences into the matter of months and days, so I am doing my best.

One shop I went into the salesguy was telling me how trashy I was because I had a tattoo and asking Russ what he thought about his wife ruining her body like that and how it reflects on him, Russ was pretty great and had my back but it took so much strength to not punch him in the face. Like seriously, how does me having a tattoo affect my ability to be a customer. Do you want my sale or not? 

I did hear comments like "your dad would be so disappointed in you and would be rolling over in his grave, if he were alive he would disown you". That one comment stung though, but I do like to think that if dad were watching from wherever he may be that he would be proud of me for choosing myself and for choosing to do things that made me happy, I would like to think that he understood out of anyone how hard it is to go on living your life knowing that anyday it could end, I would like to think that no matter how I lived my life in my final months that he would proud of the person I have tried to be... I always put everyone else before myself, so I wanted my bucketlist to be about me and doing things I wanted to do.

Before 12 months ago I didn't really feel that I had any idea or sense of who I was as a person, I do feel that I am starting to find myself and finding how amazing life is when you stop and look around.

It took me dying to realise just how beautiful life really is.

But my tattoo has become a reminder for myself that I am a badass and that I am strong, on my worst days I need this reminder, some days I need to know that beneath all these health issues there is still a young 26 year old woman trying to hold on.

Guest post on my tattoo story 
Design by Jubly Umph Facebook @jublyumphart Instagram @jublyumph
Tattoo was by Megan from Absolute Tattoo Instagram @MeganLouiseBucks  
Tattoo Studio: Absolute Tattoo Woolgoolga

Do you have a tattoo? Was there a meaning behind it?

 

Posted by: Talya AT 10:19 am   |  Permalink   |  0 Comments  |  Email
Friday, September 22 2017

WARNING: This post discusses death, dying, suicide, euthanasia and could provide a trigger. Continue to read at your own risk. Opinions discussed are of my own and I have no paid or unpaid political affiliation with Dying with Dignity NSW, nor have I been asked to write on this topic. This is purely something that I feel deeply about and it is a topic I have been wanting to write for a long time. These are my views so please be respectful

I am not one to usually talk politics with you, but this is something that is quite personal for me and something I have had discussions with Russ at length about. It is a topic that is misunderstood or misrepresented in the media, in order to create fear and hate and divide people. This is more than just a topic for me, it is something I think about daily, and that is that I deserve to die with dignity and compassion.

This week (on the 21st of September) in NSW legislative parliament, a bill was presented to the NSW upper house called the Voluntary Assisted Dying Bill 2017. This bill was created to help terminally ill adults to die on their own terms with compassion, respect and dignity.

There has been many heated debates referring this to "euthanasia" which is misleading a lot of people, politicians included, by the myths and fear mongering tactics employed by those who are so loud in their opposition of this Act. According to "Assisted Dying: Setting the record straight" an e-Book written By NSW Dying with Dignity, euthanasia is referred to as "life ending medication administered by a doctor". Under the proposed bill in NSW, a person who is at least 25 years of age, of sound mind, who is living with a terminal condition and is estimated to be in the last 12 months of their life based on the opinion of several medical experts, and is Experiencing severe pain, suffering or physical incapacity to an extent deemed unacceptable to the patient, can SELF-administer a lethal substance to end their lives and if they are unable to they can nominate a doctor or loved one to help them.

There is a need for this, a need for a law that protects and has the interests of those (like myself) who are dying from cancer or other terminal illnesses to die with compassion on our own terms when we deem the pain and suffering to be too much AND give us dignity in our deaths.

I have read reports of persons ending their own lives under horrific circumstances as they can't face this anymore. I know there have been times I have considered this, not out of depression but merely out of desperation. How can I go on knowing that the pain and my quality of life will only get worse - I didn't have any hope for the life I could still live as it is so hard... then add the feelings of guilt knowing you are hurting those you love and the FOMO (fear of missing out) on life and it can be too hard to bear. So YES, I can empathise with how someone can choose this.

Then referring to the above comment can lead to families suffering after witnessing a loved one's traumatic or "bad" death. By choosing this law families could ensure they get to say goodbye, a person could feel at peace themselves knowing they have no unfinished business, a dying person and their loved ones could make a beautiful moment or ceremony or way to commemmorate a life before it was over and it could help them to have control over their deaths and give everyone a better experience of the death.... I am not saying the loss of a loved one is easy by any means, but it could help give comfort to KNOW that they were not in pain, they were happy and they were surrounded by love.

I know my biggest fears are dying in pain and dying alone.

It scares me everyday.

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But at the end of the day it comes down to the fact that I want to and believe that I should have the ability to die with dignity.

I remember back to my first university lecture on Ethics and the law when I was studying Nursing and the topic came up on Euthanasia. The whole room was literally divided and there were many debates, we even had to do an assignment on the topic. I got a High Destinction, but it was such a hard topic. I know then my heart was divided, I was being told that "NO, it is illegal" but my heart felt that morally it was unfair that someone should die in pain.

This lecture was before dad's cancer and many years before my own, but regardless of my own experiences of mortality, I do still believe that there can be dignity and compassion and respect in dying.

Because there are so many myths out there, I want to try and dispell some, to help show this bill won't affect anyone other than those who are terminally ill and living in their last 12 year of their lives.

Firstly, I am not saying my life or those with terminal cancer isn't worth living or anything like that, I believe in living life to the full and strongly belief life doesn't have to stop being lived. I plan on squeezing the most out of my life, and it is something I try to do everyday, but I know there will come a point where I am too sick and I am just simply existing and suffering in pain and only then is that when I want to say "hey let's do this". If this bill was already law (and it is something I have discussed at length with Russ) we would wait until we knew there wasn't much of my life left.

Truth be told, I have been told that my death is likely to be extremely painful and that pain meds won't help me... My pain levels now are barely managed and I am on high dosages already, knowing my pain is going to be tenfold compared to what it is now scares the crap out of me... I would much rather die happy and at peace... wouldn't you?

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Myth: This will hurt those who are vulnerable within the community.
I know there are a lot of arguments against in the community as it could hurt those who are vulnerable such as the elderly or those with a disability, those who are of low socio economic status or even those with mental health issues.
Fact: To be considered under this bill you HAVE to meet criteria including being in the last 12 months of your life and living with a terminal illness, be confirmed to be eligible by not 1, not 2 but 3 different medical professionals including your GP, specialist and a psycologist.
Fact: YOU CANNOT JUST REQUEST IT if you do not meet the criteria

Did you know? That under this bill you can change your mind at any time too. You won't be forced to proceed if you no longer wish to. It will always come down to your choice, afterall it is the point of all of this which is to give you a choice in how you die if you're palliative and 12 months or less to live.

Myth: Assisted dying is suicide, legalising it will ruin society as a whole
Fact: People who are dying and want to control the manner and timing of their death are not suicidal. I know I am not suicidal but I am going to die, I just want to die on my own terms and have control. 
Fact: Having a choice is empowerment, having dignity is empowering.

Myth: A doctor can kill any patient and can cover it up by saying it was an assisted death
Fact: Only a patient will be administering the medication and would have met strong criteria as well as having 3 medical practitioners sign off, it isn't something that can instantly be done.
Fact: as this is patient administered it removes the need for a doctor to assist, therefore they are not going against their hippocratic oath of 'thou shall do no harm'. Again, it is not causing harm it is offering dignity.

Myth: Doctors don't know when you'll die, only GOD knows, no one can know these things so don't listen to a doctor they are wrong all the bloody time
Fact: You can look at a patient's scans and assess an esitmated life expectancy, yes nothing is ever certain but doctors know what signs to look for in someone who has 12 months to live.

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I could go on about all of this for a long time, but you can view these myths and more in the "Assisted Dying: Setting the record straight" an e-Book written By NSW Dying with Dignity, to learn more about how this law WILL ONLY AFFECT those who need it.

I know it is a heated debate, I know some oppose it under religious beliefs, but do have a read up of just how important and life changing this could be to someone like myself - a young person dying from cancer.

Dying at 26 sucks enough as it is, it is painful, it is scary and most of all I have no control or relief. I know at some point in the next 6-12 months things will get a lot worse and more painful and I just wish that this was available if I felt it was too painful. Just to know there is an option to give me control in the end would give me hope that I won't be in pain forever and I could be at peace in the end.

I know I would only do this IF or WHEN the pain got too much, I would try and hold out as long as I could before. 

Please visit Dying With Dignity NSW to learn more or to follow the progress/updates of the legistlature or to read other people's stories on the bill.

Regardless of your personal stance on the issue, do consider reading up on the benefits this could help to people like myself dying from cancer. It might not be something that will be able to assist me through my death unless it is passed within the next 6-12 months, but it is something that could at least help those in the future to have dignity in their death.

P.S If you feel that this bill should be passed please consider writing a letter to your local MP to voice your concerns and to help get this bill passed. Click here to find out how you can help! 

Posted by: Talya AT 10:40 am   |  Permalink   |  0 Comments  |  Email
Tuesday, September 19 2017

Today was a pretty big day running around between appointments from one to the next, I was so pooped (exhausted) when I got home around 3pm that I went straight to bed only waking not long ago.

Yesterday and today have been the first days in over a month that I have ventured out of the house, it is a rather elated feeling when you feel so trapped and then suddenly you feel free. Hard to explain it really, but being cooped up all the time really gets to me emotionally. I think that is a massive attribution to my depression too.

So I welcomed the change of getting out of the house today.

So today's agenda involved meeting a new GP as my current one is on leave until end of Oct and I needed to see someone, running some errands and grabbing a bite to eat, then meeting with my bowel specialist who outside of seeing me in March (when I was admitted to the hospital) I was overdue for a meeting.

So first up: the new GP
I hadn't met with him before, Russ occassionally sees him when he can't get into our regular GP. I sat down and he said "what brings you in today?", I replied "oh I just have a specialit's appintment this afternoon and need a referral as my regular GP is on leave". 

I thought the appointment would be straight forward, I wasn't preparing myself for getting into deep and meaningful conversations today.

Unusually, I am still not used to telling strangers "hey, yeah so I am 26 and dying from cancer" I feel I am always having to say it with a smile in the hopes that it protects them from any hurt they could feel, I also hate feeling morbid and smiling also helps me. 

I get a bit anxious when going into depth about my FAP story and how this is more than just a bowel cancer gene, so many doctors don't understand the complexity of it unless it is a field they study... so I was rather surprised when this doctor knew about it and said "ahh yes it can invade multiple structures" which was a relief as it gets exhausting sometimes having to fight and advocate and educate someone especially a doctor on diseases that you live with - I really didn't have the energy today to do this so it was great that he had understanding.

He acknowledged that no matter how many years he has been a doctor or how many patients he has seen that it never gets easy when you have a patient who you can't do anything for other than what issues or symptoms they had.

I got my referral for my appointmet and a script for some antibiotics for a nasty wound I had and he took a swab of it.

One part of the conversation that surprised me though, was talking about my beliefs of what comes after I died. I don't often get asked and I said what I felt and that is a whole topic for another time I think.

So off I went to the errands we had to run next (go collect a parcel from a courier depot way out of town) then forgot all about the chemists to get my script filled and went to lunch thinking we had plenty of time. An hour passed still no lunch and had 10 minutes until my specialist's appointment when the food finally arrived and I scoffed it down and left. Was rather disappointed as I had been waiting and looking forward to that lunch date for sooooo long and it wasn't able to be enjoyed afteral.

Next up: Specialist's appointment
I had called them 15 minutes prior to the appointment explaining the whole lunch debacle and that I will try and be on time but could be a few minutes late. They were okay with it, but of course the one day you run late the doctor is on time!

So he called me straight in and I sat down.

He asked how was the concert (the whole reason I discharged myself from hospital) and I excitedly told him how that not only did I win the tickets to the Dixie Chicks but they wanted to meet me too, which is something they don't often do on their tours. He was so happy. I continued to tell him that they dedicated a song that was special to me and my dad to us and he said he was so glad I could make the concert of a lifetime.

He is a great and caring doctor, he has been my doctor since 2010 so he has been there for me right from diagnosis of the cancer gene right up until this point of my life, so he has been with me through everything. He has an amazing bedside manner and has always gone above and beyond for me, he is so kind and he even takes the time to talk to Russ down the street and ask about me.

Before we dwelved into what I needed for today's appointment, he asked what can he do for me, anything? Not often I get asked what extra assistance I need, but I am not good with asking for help. I did ask for possibility of him booking me respite at the hospital again soon as I need it, he said consider it done.

We talked about what is currently going on in my bowel, Russ never comes to my appointments with him as he always usually was working, but luck had it that he could come with me today. Russ was the one that brought up the pain when I eat before I had the chance too, it was all stuff paliative care have explained to me before, but the first time Russ heard a doctor explain it.

Basicly....
The tumour is blocking the blood supply to my small bowel which means that essentially my bowel is experiencing angina.

Imagine someone with heart issues tries to walk 100m and experiences sharp pains or angina, essentially my bowel is not getting enough blood supply for it to work. My body quickly rushes blood and it surges to the area to try and make it work. Because of the short blood supply my bowel is trying to run a marathon as a sprint. Gee is it bloody painful!

So everytime I eat I get horrible pain that lasts hours after my meal.

He suggested that I try shakes, protein drinks nothing foody (blended nutribullet as it isn't really a drink) and just try those. I know when I drink or have soft stuff like icecream or zooper doopers (ice blocks) there isn't the pain, which he said would be true as it isn't food and anything food like requires the stomach and bowel to work to process it. He said watery soups would be good too, but I am not a broth type of person. So drinks and ice cream it is!

Next issue was to do with my stoma, when I eat say 7pm my stoma isn't actually working and processing bulk of my output until around 5-6am the next morning. It never used to be this bad. He said it is caused from a bowel obstruction caused by the massive main going-to-kill-me tumour as it is compressing the bowel to narrow and food can't pass properly until it is a massive push/release. He said it isn't my fault just again tumour related and even if I reduced meal sizes he said it wouldn't make a difference and that to not have as much fibrous or foods.

Before we left he did tell me that he thinks I have done an amazing job through all of this to remain the same kind and positive person, he said my attitude towards things have always helped him and he always admired how well I handled things. He said that he acknowledges that the last 18 months with my new stoma hasn't been easy but he said he is proud of how I have adapted and gotten used to it.

It made me feel better to hear from someone such as my Doctor to think highly of me, made me feel like maybe I am strong afterall.

☟ ☟ ☟ ☟ ☟ ☟

Sooo pretty much that is where I am at, that is latest health update and I am just trying to make the most of whatever time I have left. It is hard to know you are just basically waiting until you die, but I am trying my best to not let that get the better of me. I know (well, I hope) I still have a lot left to give.

If you read this far, thank you! I know I don't always update my blog as often as I would have liked, but sometimes when you spend 20 hours of your day in bed asleep it is just easier to microblog on facebook or instagram. You can follow me between blog posts by searching @feelingostomistic or twitter is @feel_ostomistic.

Posted by: AT 11:01 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, June 13 2017

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your best teacher is your last mistake

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

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

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

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

Always remember:

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

Posted by: Talya AT 01:36 pm   |  Permalink   |  0 Comments  |  Email
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
Thursday, November 24 2016

I took the plunge this past week, and did something that has been on my bucket list for a while now.

I tried a CRONUT, and it was every bit mouth orgasmic as you would expect. Seriously, if you are in Woolgoolga (NSW) be sure to stop by The Next Phase on the main street for an experience you won't forget in a hurry.

But I did something even more terrifying.

I enrolled in a Diploma of counselling online, not that I have enough going on (cancer, facing mortality and living life).... but when I enrolled, before being accepted, I had to write why I wanted to study counselling.

Long before I was told that my disease is at the end stage, I wanted to study counselling and hoped that one day Feeling Ostomistic would branch out into counselling sessions online (via email, skype) or in person... so when I got my prognosis I made it a personal mission to study it before I cark it.

So there are two reasons why I want to study counselling, and both are pretty important to me:

#1. To help you:
There have been times where a reader has reached out to me needing support. While I am happy giving support through my lived experiences, sometimes I feel that a professional would be a better person to talk to. It has never been that I didn't want to hear you out or help you, but it was more I was worried about not being able to help you properly as I am not equipped with the skill set.

I always feared that I was doing more harm than good. So I wanted to study counselling to help me identify people at risk, people who have a need that they might not realise themselves and to make sure that I have the right tools to help you in your time of need in a way that is empowering, helpful and the right way.

#2. To help my husband:
My husband has Autism, and one thing that he struggles with is change especially suddenly. I have felt so guilty seeing his pain as I have progressively gotten worse, and knowing that I can't fix it is frustrating. But also it worries me that I won't be here (when I die) to help make sure he is okay and looked after.

Russ needs changes to happen over time and to be gradually introduced to the idea. But when it comes to my death which is inevitable, I am struggling to introduce this to him over time. He knows I am unwell and we talk openly about it and my wishes, but it is more after it happens I am concerned about.

So I am studying counselling to help me to learn grief coping techniques that I can teach Russ and help him to identify when he needs to seek help. I feel by at least knowing the tools to help teach him is a great place to start. I just feel so helpless and I worry about him a lot, but I hope that I can really help him.

So that is my two reasons behind enrolling in the course, the online college was pretty impressed with my maturity and selflessness... I really do try to lead as much of a selfless life as possible.

I just always felt my purpose in life was to help others, I just hope I can.

Posted by: Talya AT 11:38 am   |  Permalink   |  0 Comments  |  Email
Monday, September 05 2016

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

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

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

☟  ☟  ☟  ☟  ☟  ☟

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

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

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

I know I’m not going anywhere.

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

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

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

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

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

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

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

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

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

Because I met her!

About the Author:

Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.

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

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Russell AT 07:26 am   |  Permalink   |  3 Comments  |  Email
Friday, August 26 2016

Today, and as it seems a lot lately, I am constantly met with doubt and disbelief when I share my story/prognosis or the fact that I am 25 and terminal with cancer. It almost always makes me feel like people assume that I am making it up.

For the past year my husband and I have been working on a new segment/section of my blog called 'The Ostomistic Husband' which will be posts and topics written by him and in the hopes of showing the perspective of how a spouse feels or views their loved one's illness. 

So, take it away Russ!

☟  ☟  ☟  ☟  ☟  ☟  

All too often I have Talya tell me how annoyed and upset she is because someone has just told her, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.

I’m sure you have heard the same from someone you know with an illness; it seems to be all too common.

I myself believe I have a mild autism which makes me: crave routine; shy away from human interaction; find it difficult to create and nurture relationships as I don’t readily say what I feel inside; have processing issues regarding certain tactile sensations, etc.

These things are not visibly apparent and are not easily discernible even when you are interacting with me.

Why? Because I’ve spent a LOT of time learning how to go about my day, to fit in without drawing attention to myself unless I feel safe to do so. As such, it pains me to hear that Talya is being judged by her outward appearances and not by the effort she makes to display her frightening lifestyle in a manner palatable for those around her. She is always trying to alleviate others…

Fear.

I think that is probably the major force behind the “You don’t look like you’re dying of cancer so it mustn’t be that bad” line.

No-one wants to admit that a young person as outwardly vivacious and spirited as Talya could be dying inside, because that means that they too, may have something as monstrous within them (and not show any signs).

After all, they look fine. Don’t they?

Talya and I see this very differently.

She feels that people are constantly attacking her; sometimes bluntly and sometimes in a back-handed way.

I feel that people are constantly protecting themselves; outright denying the facts about her health (in fear for their own mortality) or suggesting that it can’t be as bad as all that (simply hoping that it could be true, were they in that position).

People don’t want to accept change, they are afraid of the unknown. I get that, more than most.

In the private studies I’ve made on human nature, and by simply watching people react to a situation then react to their own reaction, I believe that people are generally afraid inside (and what a perfect evolutionary trait in self-preservation that is). Some have learnt to deal with that most primal of instincts internally, while others still say, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.

All in all, I feel for Talya a great deal in the aforesaid circumstances but I remind her that she is simply better at hiding her pain than some others are at dealing with their fear.

I say, “If they want to blurt out hurtful statements, without understanding what you are going through, to make themselves feel better, that’s on them, not you. But please, see it from their point of view too”.

No-one wants to live in fear.

 

About the Author:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.

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

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Russell AT 02:12 am   |  Permalink   |  2 Comments  |  Email
Friday, August 05 2016

One of the hardest parts about being terminal and knowing your life will be short lived, is knowing just how much you will be missing out.

There will be plenty of birthdays, milestones, graduations, weddings and babies no doubt...

But it has really been upsetting me lately knowing that I will be missing so much, and that is hard to deal with.

I also know that if I leave Russell up to the task of buying special gifts for after I am gone, I know not only can he not choose a good present but he is never organised enough to make sure a present is arrived in time.

Heck, I start Xmas shopping around April/May each year (yes I already have presents organised already).

But part of me feels that I should be organised now and start buying gifts and getting cards together for their birthdays, future babies and weddings... but will that be creepy? Like will they be creeped out that I am giving gifts beyond my grave?

Hardest thing is I can't find like a 'etiquette to dying' handbook to tell me what I am meant to do and organise before I die... so I am kinda just winging it. (trust me I have looked... wait maybe that is my e-course or e-book idea?)

I wish everyday that I wasn't dying or that I can continue to grow old with my husband... I wish I wasn't given this shortened life sentence and that I could find a fairy godmother to grant me 3 wishes with one being 'to be cured'... but that only happens in fairytales and I am no Cinderella.

I really want to be here for Russell's 40th in 4 years, but I threw him a pretty cool 35th party (but I didn't tell him it was because I might not get to throw him a 40th). The party was under the disguise of 'half way to retirement' party.... but he had fun and his friends all had fun too. It was a themed party and everyone was to dress up as something they wanted to be when they grew up.

Was a lot of fun, and he asks me if I will throw him another party and I just reply "We'll see" and put on a smile and hold back the tears. I am considering a housewarming party, but we'll see.

Like I know I am not ready to fall off the perch just yet, and I hope I at least have another year or two but I am the sort of person that needs to be prepared and needs to be organised.

But tell me, if you got a gift or a card from a loved one beyond their grave, would you be creeped out?

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Talya AT 11:06 pm   |  Permalink   |  2 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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