Tuesday, August 07 2018
Tomorrow is Dying to know Day, which is an initiative to encourage people to openly talk about their end of life wishes but to also become better educated and informed about the decisions to be made.
There are 556 events happening all around the country (Aus), to see if there is an event near you click here.
I recently discovered that there are death doulas/death midwives, who help to assist people with their end of life decisions. I am hoping to collaborate on some posts soon with one and share more information about the services but also about being better informed, such as planning your funeral could save you thousands if done in advance, and I am interested in learning about that! So stay tuned for that collab.
75% of the population have not had end of life discussions or discussed their needs, even for something as important as organ and tissue donation. If you have chosen it on your drivers license you still need to register via the donate life site, it takes less than a minute to sign up and you could save many lives.
I know that many find the topic of talking about death confronting or it is rather taboo, but I know for me I want my wishes heard and understood so that when the time comes I hope others know in advance what I want, such as to be at my own home not hospital, and that I hope by having my funeral planned it can save my family the stress of it as they grieve. It also gives me peace of mind that I am getting what I wanted, which I know I won't be there but I still want to know my needs are voiced.
Take this time today, even if you aren't sick and facing your mortality early, to have a conversation with your loved ones, to consider checking your will is up to date and your power of attorney are valid, also checking that your advanced care directive is fulfilled. Tell your family if you want to be an organ/tissue donor and tell them what sort of life celebration you want to be had in your honour.
Also take this time today to become more aware of your options and choices available.
If you're wanting to know a place to start in terms of death literacy and being death aware, this is a link to a list of resources available via dying to know day called "the big list".
For an interview with a death doula on why they believe everyone should have a death plan, you can read more here.
But do spend tomorrow writing a list of your own ideas or needs, and take the time to talk with your loved ones too.
There are plenty of events happening around the country, quite a few in regional NSW too, closest is Port Macquarie for me, but I don't imagine I could get there tomorrow. But palliative care are coming for their usual visit so I plan on making sure my documents are up to date.
However you spend your Dying to Know day, I hope it is a good day!
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:
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:
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:
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:
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.
Friday, January 19 2018
I had wanted to write about this topic so many times last year, but each time I feared if I did it could somehow come across that I am some angry hermit who doesn't like visitors.
I don't claim to talk on behalf of all the people who are chronically or terminally sick, I simply am sharing mine (and my husband's) views of how we feel when you have surprise visits. Sometimes surprise or short noticed visits are difficult and stressful, you mightn't realise but there are reasons that make surprise visits difficult.
It could be very easy for you and your loved one who is sick to know how you can better support them and what things or actions don't help them. Finding how they feel about their needs or issues and how you can better help could be a starting point so you both can understand.
It is hard when you're chronically (and also in my case) terminally sick and trying to navigate the waters of keeping up appearances, being social and people visiting often surprised and unnanounced. I know people care and they decide as a last minute thing that they wanted to visit me for the day but don't bother telling me as "it is fun to surprise you" thinking it will make me feel great about myself having visitors, but they don't realise surprise visits cause me a lot of stress and anxiety which I explain below.
Don't get me wrong, I like when people visit but only if 2 conditions are met:
There were a few times over the past couple of years when people had surprised visited me and despite continually asking for no surprise visits, they still happened.
Family and friends were outside waiting and were upset and bothered when I didn't answer the door, because I was asleep and had my phone turned off so I could sleep.
I NEED notice when it comes to having visitors for a few reasons.
#1. I sleep a lot:
#2. My stoma leaks a lot:
#3. I often sleep starkers:
#4. I am often in pain and bedridden:
On days when I am bedridden I would love visits, providing you are understanding that I am in bed and you can sit in my room chatting with me. But don't expect me to get up and entertain you, defeats the point of being in bed resting. Don't ask "when are you getting up" or "why aren't you getting up" because it makes me want to kick you up the butt if I could because I don't need to justify myself to anyone.
#5. I can't just simply duck out to the shops:
If you arrive and we don't know in advance, even if you tell me in the morning, if Russ has already left for work it is too late. I don't have a car and can't drive much anymore, so if you surprised me it would mean I wouldn't have milk or cake or anything and would be a terrible host (again) and I would be feeling so anxious all day if you arrived worried that am I going to hear about this from others about how I am a horrible host... I don't mind if you do turn up unnanouced, just don't be upset if I don't have milk or coffee and can't get to the shops.
#6. I need a chance to cancel:
#7. Our house mightn't be visitor friendly:
I could go on about scenarios, there is so many more.
But I do love a visit, just prefer at least a couple of days notice at the very least to make sure the house is ready or that if you're staying the guest rooms are ready. You can visit, please just understand that turning up and surprising me isn't what works best for us.
I know it is hard to understand, but please do reconsider and try to give us as much notice for when you want to visit. I want to have a nice visit with you but I don't want either of us to feel uncomfortable.
If you do decide to that day or morning to visit, please give me as much notice as you can. If you arrived in Coffs at 9am but aren't visiting until 4pm Don't wait until 3pm to call me! Tell me first thing so I can have time to assess if I am up for a visit or under what terms. If you don't hear back from me or Russ before 4 hours before you're planning on visiting then it might not be the best day. If you don't hear from me, try Russ.
But if Russ says "today isn't the best day she isn't well" please respect his call.
Don't continue to turn up and then be upset if you're outside waiting for me for a while and I am asleep and don't know you're there until an hour after you've sat out there waiting. If you haven't heard a conifrmation at least 4 hours before arriving on if I am aware you're coming or if it is the right time, than maybe it isn't the most apporpriate time for a visit.
Again, none of this is said to upset anyone, I want visitors I really do - I just don't do well with surprise visits. My health IS declining and I am spending more time in bed, so surprise visits really aren't ideal for us anymore. #sorrynotsorry
As I said, ask your loved one how you can support them and what they need from you, in my case try to avoid surprise or unnanounced visits.
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.
☟ ☟ ☟ ☟ ☟ ☟
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.
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
Myth: A doctor can kill any patient and can cover it up by saying it was an assisted death
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
☟ ☟ ☟ ☟ ☟ ☟
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!
Sunday, March 05 2017
It is my birthday in 5 days and I am struggling with it, this is the first birthday in 5 years I have wanted to celebrate it. I am having a birthday of my dreams with items on my bucket list e.g enjoy a cocktail again, have a high tea for my birthday, do a flower crown workshop. It was meant to be a surprise vow renewal, but Russ shut that idea down quick smart.... he still claims to hope I will somehow miraculously make it to our 10 year in 2020.
I know it sounds weird that this is the first birthday in 5 years that I have wanted to celebrate, even though that has its own rollercoaster of emotions to accompany it.
This birthday is my 26th birthday but it is also very, very likely to be my last.
For the latter reason, I tried to put aside my issues and feelings to try and have the best birthday I possibly could not only for myself as I feel I need to be shown I am loved and that I matter lately (that is a whole story for another time) but I also knew that THIS was important for my family and friends.
I was told last month that "I don't understand what the issue is with your birthday, you are the only one feeling this way".
It kind of made me feel a little angry that my feelings weren't valid and that I should just suck it up, but this isn't that easy.
You see my birthday was always something I shared with my dad and we would always do a combined birthday, my birthday was the 10th and his the 11th. It was always precious moments I shared with him.
Why I find my birthday hard ☟☟☟☟
It was March 10th, 2012 when he actually started dying. He was terminal with cancer, but that day - my birthday - was the day he started his dying process.
It was also my 21st birthday.
I had this whole day planned, spent over $3000 on it and family were travelling all over for the day mostly because it was my birthday but a big part of it was they knew it very well would be the last time they would see my dad. I knew that, they knew that, he knew that.
So that morning I arrived at 7am to my dad's house to be greeted by my nan who said "He doesn't want you to know this, but he probably won't make it through the day". I went in to see my dad and to sit with him. He looked at me and said "you f$cking know don't you?" and he started yelling at me. I knew this was because he was frustrated, he felt like he had lost his independance and the one request he had to everyone was to not ruin my birthday by telling me, he was so selfish that he wanted his daughter to have a great 21st birthday, but he was angry.
I was so upset I jumped back in the car and drove back home to drive back ready for the party. It was a 3-4 hour round trip and I used the excuse I forgot my outfit (which I did). I drove the whole way crying, shaking and at one point pulling over because I was having an anxiety attack and couldn't see. I wasn't alone, I had Russ with me who was talking reason to me.
I had to get all my tears out before I returned to see him again, he got angry if people cried and gave him pity so you had to hold it in or if you felt you couldn't he didn't want you visiting.
So I got back to his place, I was eager to cancel the party because I wanted to stay with him and do something different.... but he wouldn't let me. He didn't want me to miss out on my birthday and he tried his best to get there but sadly he couldn't.
I understood but boy it hurt.
I got to my party and felt so guilty, I felt like I was the worst person in the world and that everyone would be judging me for being there instead of with him. I made an appearance and snuck outside and just cried for ages. My best friend came looking for me, she had a drink in her hand and she told me to take my time. I had a couple of drinks of liquid courage and went back in to face everyone.
I had a few more drinks and started to loosen up, I started to dance and had fun, I was surprised the DJ knew all the songs to play and I was having such a good time.
Then it hit me, I felt the guilt again and then I started crying all over again.
Midnight came and the venue needed to close and I headed to dad's where I was meant to spend the night but knowing he needed his rest my friend let Russ and I stay there. He was waiting up for me and gave me my present, it was this beautiful silver heart bookmark engraved for my birthday.
He proceeded to tell me that he was texting the DJ all night the songs and he was telling my dad how I was, he knew already that I disappeared early in the night and was pretty upset but I tried my best to have a good night.
Next day was his birthday and we sang happy birthday via webcam as his room was too small with all the hospital equipment to fit over 20 of us. He managed to get out of bed that day and walk around with assistance, and I thought maybe he wasn't dying afterall.
Later that night it was only Russ, my brother, dads partner and I that were there when his breathing slowed right down that I thought it would stop and he was losing consciousness. We called the ambulance and I thought he was going to die. He held my hand and talked to me. He told me he was sorry and that he was proud of me.
When the ambulance officers came they told us to make ourselves familiar with his end of life wishes and to have the plan at hand, knowing when the time comes we weren't to do anything as he was DNR.
The next day I was having severe endometriosis pain and realised I had no pain meds with me and needed to drive home, as Russ didn't drive I had no way of getting back to dads so went home to rest. I got the call to say the doctor had been and they said he might have a day or a few days but definitely need to get everyone to say their goodbyes.
He died overnight, getting the call at 4am and jumped straight in the car and drove down.
He had always said he wanted to make it to at least see his oldest turn 21.
Why I struggled since to want a birthday ☟☟☟☟
But each year since, I would get rather depressed leading up to it. I had a lot of guilt and I felt traumatised from the events around my 21st birthday and that my birthday never felt the same, I felt like I was missing a piece of me.
So I decided not to celebrate my birthday and would use this time to go away with Russ somewhere that I could just escape everything and everyone, I know it is selfish but I really can't cope with the overwhelm of feelings. But it is also because I just can't cope with this feelings, so I avoid them, I am in denial that I need to.
Fast forward to this year, after the suggestion of family they felt that I needed to do this for them, so I have been trying a lot to make this a memorable time for them and hopefully myself, but it is hard when everytime I feel a little excited I then feel this massive overwhelm of guilt and I start vomiting. I can't help but hate myself for trying to want a good time when these feelings keep coming back.
I know no one understands why this time of year isn't easy for me, but it is so hard... it is hard to not feel survivors guilt or that I shouldn't be happy so close to his days.
I am trying my best but I am also struggling.
So I am stressed, I have $800 worth of things needing to be paid for before Friday. I applied weeks ago for a special terminal illness grant to be approved as a dying wish and still haven't heard back even though Russ has sent numerous emails. All the vendors demanding their monies and I am so upset that it won't be the perfect day I dreamed of. I have the cake $200, food at the venue $240 or $6/head and the flower crown workshops of $400 ($20/head). I know guests are paying for their own cocktail high tea in lieu of gifts ($35/head) as there was no way I could afford that too.
Didn't help that last week my cake maker pulled out and had to find a new one, which I am loving the cake.
I just worry I won't have enough time to wrangle money together if they don't let me know ASAP an outcome, I need to have time to either find things to sell or convince Russ to use one of the credit cards which means also getting the bank's approval as it will affect the outcome of our homeloan review in the coming months.
Besides, Tuesday I have an MRI and that has me rather anxious and worried.... just keep asking them to keep the results until after my birthday...
I just want to try and have one LAST memorable, uneventful, drama free birthday! Is it too much to ask of? BUT wish me luck, please, that the rest of this week goes smoothly!
So if you have heard me talk about why I am struggling leading up to my birthday, this might explain it all! But it is a comfort knowing that I will see him soon, life hasn't been the same since.
I miss dad so much ❤
p.s pretty keen for my first drink in 5 years, just hoping it doesn't trigger a pancreatitis attack or interfere too much with my medications... drink of choice is a fruit tingle
Saturday, 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.
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:
#2. To help my husband:
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.
Tuesday, August 09 2016
I am so excited! Our house that we have been building (for what feels like years), is FINALLY at the 4 weeks to completion point.
This means that in 4 weeks we receive our keys and we can start moving in, ending our time as tennants and time to pay off our own mortgage.
This will also be my final house I will ever live in, and if my plan for an at-home death falls into place this will also be my final resting spot... and this is a dream come true, something I never thought I would get to experience.
In my 25 years I have lived in something crazy like 47 houses (I can name every single house) because my parents rented and sometimes we moved every 3-6 months, and then I have moved a lot in my adult life too.
So I am pretty excited to finally have a house that I can make into a home and not have the stress of house inspections and being evicted and having to move EVER AGAIN.
I am also pretty excited for my garden escape to be built and to have a place I can go to escape that is my happy place.... some days I really need somewhere outside of the house I can go and have privacy (and where we currently live that isn't an option as there is no fenced yard).
It took a lot for me to want to ask for help to create the garden escape for me, and I felt that some might feel that a garden was a silly dying wish to have, but it has been something that I really want and need... especially as I am mostly housebound and this is rather isolating and some days I am so down and depressed I don't get out of bed.
I know things will only get worse as time goes on, so I know that I will need this. I used to love going to the botanical gardens when I was sad or angry and it was my happy place, but I can't walk far anymore before being in too much pain so Russ wanted to try and bring the garden to me.
Russ set up a gofundme page to try and raise the funds needed to make this magical garden escape for me, and we have been so humbled and appreciative of all the support and donations so far! The link to the gofundme and to read my story thus far, https://www.gofundme.com/gardenfortalya.
For what the working bee will involve (for those who have expressed interest) and my vision for my special garden and landscaping, please read on below. There is two sections: the main special garden (is my priority), but we also would appreciate any help in the rest of the landscaping (such as turfing, creating some gardens, laying pavers, mailbox) etc.
I have had a lot of family and friends ask what help we need in the garden, but also what things we need for the house. So I decided I would write this as a blog post so that I can just send them the link and they can read it, as opposed to me explaining it repeatedly.
Please note: I am not writing this expecting to get things for free, expecting charity or expecting anyone to buy things on our list out of obligation; especially as some of the things we need are costly. But if you want to help in the form of letting me know of a good sale going on, or a tradesperson that you know can help (and won't charge an arm and a leg and is reliable/trustworthy) please let me know! Or if any businesses would like to help out with a discounted price on an item we would be so grateful... I am really wanting to make a home that I can comfortably live out the rest of what time I have left.
1. Why a working bee?
As more and more people expressed interest in helping us, Russ and I decided that we would organise a weekend after we had moved in and settled in where we could invite people over to help us with the labour of helping our garden and landscaping. Neither Russ or myself have skills when it comes to building things and neither have had a house where we needed to do gardening, so we really appreciate all the help that has been offered.
Due to my tumours and state of my health, I won't be able to get out in the yard and help, but I am planning a lovely lunch/BBQ for everyone as my way of saying thank you but also making sure that everyone is well fed and has fuel to continue on into the afternoon. [If anyone would love to be my BBQ cook, please let me know].
I also hope that this working bee will feel like a community type project that brings people together and know that they are making a huge impact in my life and helping me to enjoy what time I have.
Once we have moved in and I have more of an idea of dates, I will create a facebook event for people to express interest in the working bee (to help me also to know catering numbers).
No one is to feel obligated to help in any means, we just thought it would be a nice way to bring together people who are able to help out.
As Russ and I have invested all our savings into building this house and paying for my medical expenses (keeping in mind we are a one-income household and are really struggling), we are trying to save money where we can.... so by people offering to come and lend a hand to save us paying someone in labour costs is really helping us out.
2. Help we need for the special garden (and help at the garden working bee):
The gofundme page that was set up by Russell will be used to fund this special garden, at the moment we are at 50% of our fundraising target and most of this funding will be consumed by the pond and water feature installation and the creation of a rock bench and pavers. I also need to buy a fence and gate, plants and koi fish... it would be awesome if we could reach the target goal and I can have the garden of my dreams and my true tropical Oasis... it is quite a big garden measuring 6.1m x 15m!
✰Pond and water feature installation:
✰Bamboo like plant for a screen:
✰Hardy oriental type plants:
✰Pavers and garden path:
✰Colourbond fence and gate:
✰A nice big feature rock:
✰A bonsai tree:
3. Other areas of our garden/landscaping we would love help with at the working bee:
✰Garden Shed installation & concrete slab:
✰Timber trellis/pergola thingy:
4. Our list of things we need/want (in no particular order of importance):
✰Upright Freezer and cooked/frozen meals:
Russ' mum has bought this one for us as a housewarming and is planning on cooking a bunch of meals I can freeze and reheat for dinner, and the frozen meals will help so much.. if you feel like cooking a bunch of meals too I will happily accept!
We honestly in 7 years have only ever bought 1 teatowl and it hangs on the side of our fridge... it was meant to be this cool bamboo and super absorbent but it does jack shit! No joke it is useless.. so we end up using towels to wipe up the dishes and I really need FUNCTIONING tea towels that dry and don't leave fluff all over the plates either.
I really cannot wait to get started on the garden and to make this house into a home. I hope those that come to the working bee will enjoy the BBQ.
Much love and so many thanks,
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.
Friday, May 20 2016
When I talk to a lot of my friends or peers who aren't sick I realise just how different our current life stages are.
I have some friends that are busy planning their weddings (which I am loving being involved as I just love LOVE and weddings and all things happy) but I am at the stage of my life where I am planning my funeral and my list of wishes I want to do before I kick the proverbial bucket... but just because I am planning my funeral doesn't mean I have given up or that I am not being optimistic or ostomistic I should say about my situation.
While I feel a little sad that this is my current reality, I am in no way giving up so please don't tell me that I am.
For me, planning my funeral and writing a bucket list or as I prefer to call it my 'happy list' I feel is somewhat empowering and it makes me feel I have control over my situation, and control is something that is often lacking when you are sick, especially terminal.
Why is it empowering you might ask? Well it is simple really... it means I have control like I said just before, but it also means that when the time comes my family and husband won't be left wondering what I wanted to have done.. and I have seen the arguments over funerals and who organised what or didn't organise and I want to spare my family that extra stress when they are grieving... albeit they will have to make arrangements and finalise the order of things like flowers and food as I don't know when I am going to die (and this is the hard part about planning your funeral). But I am planning on having everything written down and instructed and planned so all they need to do is make a couple of phone calls and order things... I want it to be simple for them and want them to feel stronger that they don't have to make these decisions.
One thing I am struggling with is having my family and friends involved in helping me plan my funeral.. which it will be more a party/memorial service as I plan on being cremated so there won't be a body. But, no one is wanting to help me and I understand it is hard for them but I just wished I could talk openly and be supported without feeling like I am upsetting them. And I don't want them to read this and feel obligated in anyway to talk with me or help me plan, it is just one of the hard things about my situation is that it is hard on those who love me.
I want a party like service where everyone is to wear colours, and I want to find bio-degradable balloons that I can have released, I want bright flowers, I just want it to be bright and bubbly like me and not dim and black and depressing because that isn't me.
I am working on a concept for my funeral called a 'waste free funeral' where things like flowers can be donated to nursing homes or people in hospital doing it tough to make their day brighter, or left over food to be given to homeless shelters or like the balloons I don't want them to impact on the environment. I want to have a great send off but I don't want to hurt the environment or others, so I want to give back where I can and this is my way of doing so.
But please, if I am wanting to talk to you about my funeral and I am all happy and chirpy please just think about what you're about to say as it hurts me when you say things like "well that is too depressing to talk about", or "why are you giving up" because I don't want to do this alone and I am not sad or hurting about this decision... as I keep saying it is making me feel empowered.