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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, 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.

☟ ☟ ☟ ☟ ☟ ☟
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?

☟ ☟ ☟ ☟ ☟ ☟

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.

☟ ☟ ☟ ☟ ☟ ☟

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
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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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