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, January 12 2018
I was scrolling through my Facebook 'on this day' memories when a post from this day, 5 years ago, came up.
The post was:
You see, I had a pretty MASSIVE and life changing decision that needed to be made.
I was told not long before Xmas 2012, that I had early signs of bowel cancer and that I needed to have a surgery called a total colectomy with a permanent (end) ileostomy created.
I was so scared, I was so alone and I didn't know of ANY other people with an ileostomy let alone a young person with one.
I was 21, why should I have known anyone, afterall I was ignorant and thought just older people lived with stoma bags, it was hard to fathom a young person living with one.
I ignorantly made this association as I presumed that people had a stoma at the end of their life and that their lives are essentially over.
So when I was told that I would be needing one at 21, for the rest of my life, I was really freaking out.
I tried to search for blogs about young people with an ostomy and couldn't find anyone. Social media wasn't what it is today, there was Instagram but it hadn't taken off, but there was still so much stigma around living with an ostomy and the social stigma too for that matter, that not many were sharing their lives publicly.
The media wasn't helping much when it came to sharing stories about people with a stoma either. They published such negative, fear mongering articles that had people, like me, perceiving it as death sentance or that it was THE worst thing imaginable.
But my surgeon said this to me :
I met with my stoma nurse, counsellors and surgeon a couple of times to help me process the surgery. I hadn't told any of my friends or family, I didn't know how to bring it up, I knew they would have questions that I wasn't ready to answer, but I was worried about being judged.... so I decided to wait until I had to tell them, which was the week before surgery. I had so much to process as it was I just didn't need anyone else weighing in, they were pissed understandably, but they were also upset that I was trying to process such a huge thing on my own.
I had told Russ though and he had been coming to my appointments with me, as it was impacting him too. At the time I gave him the option to leave me, told him that I wouldn't hold it against him if he did as it wasn't what he signed up for, he told me to stop being ridiculous and it would take a lot more than that to stop loving me.
I couldn't have gotten through all of this and life to come, without Russ though.
He came to my appointments and asked my surgeons or stoma nurse questions, he even asked if when they teach me how to look after my stoma that they show him too so that he knew how to help. I think it was at that point I fell even more in love with him, which I didn't think was possible.
Russ said to me that it was my decision to have the surgery or not, but if it meant that this could be helping me to live as long as I could that he would appreciate me having the surgery.
So 5 years on, this is a letter I wished I could tell my scared 21-year-old self, I don't even recognise that part of me anymore I feel like this was a massive turning point in my life and I grew up A LOT in the years to follow.
Letter To My 21-Year-Old Self:
I know you have a lot that you’re dealing with right now and I know that you’re doing the best that you can under the circumstances. You are facing a life-defining decision right now, I can tell you this because I have watched you live through this.
Yes it changed your life but it saved it too.
Do you know how much pain you’re in right now and every time you go to the toilet? You probably won’t believe me when I say this, but you won’t be in agony multiple times a day. You won't even be needing to spend most of your day on the toilet either.
Do you know how you don’t leave the house, go out for dinner or stay over at someone’s house unless you know that a toilet is accessible and close by? Well, you won’t have to worry as much. You won’t be needing to quickly dash to the toilet every time you eat.
Do you know how you lost your enjoyment of food because of the above comments? You will find you can eat all your favourite and missed foods, given there are things you can’t eat anymore, but you will find you will learn to love and appreciate food again.
I won’t lie, there will be some pretty difficult times ahead, not only will surgery and the recovery be long and hard but it will be painful.
You will adapt to stoma life, but it will take time, so be patient with the process.
There will be times where shit literally will happen, it is to be expected, but trust me - you will get used to it. You will sometimes wake covered in shit, so just remember to empty your bag throughout the night and also invest in waterproof mattress protectors.
Sometimes leaks happen, it isn’t your fault, but always carry a spare set of supplies everywhere you go just in case. There will be a time where you’ll be caught out, it will be embarrassing and it will serve as a learning curve.
I know you’re apprehensive right now about surgery, but your stoma will serve to give you extra time… everyday is a gift and not a given right, learn to appreciate each day you wake up and all of the moments you have.
You don’t need to worry about Russ or your marriage, he will be there for you every step of the way. He will surprise you at how calm and collected he is even when you’re flustered and freaking out and covered in shit, even if it is in the middle of the night. He won’t mind helping with your bag changes or leaks, you just have to ask him.
He loves you for you and your stoma will soon be a part of you.
You will lose friends, because they don’t understand - it will hurt but don’t dwell too much on those who aren’t there for you and appreciate and be grateful to those who are. You will make some great friendships over the coming years too, you'll find people who embrace you for the wonderful person you are and won't be worried that you have a stoma.
Just remember what dad used to say to you and find comfort in his words offered.
The next 5 years will be incredibly tough and this is just the start of the rollercoaster ride known as life, this will be the first of many primary cancer diagnosis’ and the start of many surgeries.
Know your limits but also recognise when you need to ask for help too. Put your stoicism aside and ask people to help you, most are wanting to help they just are waiting for you to ask.
There’ll be times where you easily wished you could pick up the phone and call dad, but there’ll be times where you will draw from his presence and he will be there to guide you. I am sure he will be proud of you.
Learn to pick your battles, know that some just aren’t worth the stress. You will come to learn to try and let everything go, everyone will always be having their own opinion or force their mindset onto you. Just stay true to yourself. Know your worth. Know that you aren’t what they think of you.
It will be hard on your mental health throughout times over these next 5 years, there will be times where you spiral and it is important to always recognise when you need help. Find what drives your creativity, focus on writing or creating, find ways to give yourself purpose in your day.
You are about to start a blog, you are worried about putting all this out there publicly and worried about how other’s perceive you. But by doing this you are going to be helping so many, you will help save lives, you will help nurses in how they help support young people with a stoma, you’ll be nominated for awards, you will even start your own magazine for young people with a stoma and will even help others to feel less alone.
You’ll start your blog because you’re finding as a 21-year-old female that there isn’t much info out there at the moment when it comes to young people with a stoma and a blog, you don’t know what life will be like going forward, but you will feel that if you share it as you go that maybe you’ll help others who are feeling alone or worried too. You will meet other young ostomates too.
You’ll even be invited to speak about your time as a young ostomate.
But you will also get to do some fun stuff too, like catch the train to Adelaide, go to P!nk’s 2013 concert, Meet the Dixie Chicks and see them in concert in 2017, finally get to experience and see Darling Harbour, Go to Melbourne and accidentally stumble across the Offspring hospital, go swimming and do water aerobics, and do some bucket listing too. You'll finally get a tattoo too!
You and Russ will realise your house dreams in 2015 and will build a house, you’ll also have a very adorable and fun kitten who will make your days fun and full of love.
Then in 2016 you’ll need surgery to remove one of your tumours which will mean losing your stoma, your stoma will now be retracted and sit under your skin. It will leak a lot, it will be hard at times to lose all hope knowing the good stoma you had prior, but you will get through it. You will get used to daily leaks and waking up with a leak, it will affect your mood and what you do but you’ll be relatively okay.
In 2016 you will also enter palliative care, they will offer you a wheelchair - don’t decline out of pride or feeling like you aren’t worthy of it. You will learn to love your wheelchair and embrace it, just like you have your stoma.
So while you have a huge decision to make right now, I can tell you this now that you will be better off having the surgery. You will be okay, your marriage will be fine, you will love life and not fear it.
Don’t fear asking your stoma nurse for help, even if you feel it is a silly question, she will be one of your greatest supports. She has probably heard it all, you really couldn't do this without her....
But you have got this, your life will be changed but you will cope and adapt.... just breathe!
Write that bucket list now, start to see and do as much as you can and don’t keep saying there’ll be plenty of time, go travel when you’re able to and take lots of photos and always tell those you hold dear you love them and appreciate them.
P.S I just wanted to say thank you to each and every person who reads my posts, comments on social media or on here or has emailed me over these 5 years supporting my blog. Cannot believe it is 5 years later already!
Monday, January 08 2018
I know there has been a lot of posts around social media this past week (well, more so New Years Day) about the whole 'non resolutions' or how people were dropping the making resolutions as they either never stick or it makes people feel overwhelmed and anxious. This has something to do with the pressure placed on how it is a "new year new me" and that you internalise this pressure for the need to change yourself.... so it gets pretty depressing when it is the end of the year and you are yet to do one thing you set out to do.
Well, I know for me I get horribly depressed each December when I realise that none of my unrealistic/unattainable goals weren't met, and I feel like a bit of a failure and get pretty hard on myself.
So this year I plan on doing something a little different... I give up on each year setting myself the task of finding that million dollar idea (maybe if I don't try so hard I will find it), or to feel bad that I didn't finish my uni degree, or that I haven't got a hot bod (#sorrynotsorry).
I am choosing 18 ACHIEVABLE things I want to accomplish in 2018.
#1. Self Care:
I purchased the ebook version off Amazon and by a quarter of the way into the book I was astonished, I could have sworn it was me who had written this book as it was just so incredibly relatable. It definitely has me hooked!
Self care isn't necassarily just candle lit bubble baths with a glass of bubbly and reading a book, it can be a whole range of things. It could be doing things that make you happy, here is a post I wrote back in 2016 about 5 things to do each to add happiness or meaning to my day. You could choose to meditate or do yoga, could do a course or learn a new skill, could do something on your bucket list, could volunteer, do a random act of kindness, buy yourself flowers, get pampered, get your hair done or watch a movie or show.
#2. To read more:
So I have been so focussed on micro managing every part of my day/life that I would say I was too busy to read or I didn't have the time, but I vow this year to make time to read more. Whether it be the ebooks I have stored on my ipad or tablet, or going old fashioned and reading the amassed pile of books I have acculumated over the past few years. So starting with reading "The Self-care project" I am setting myself the challenge of either reading 1 book a month or 18 books this year.
Let's do this!
#3. To say No more:
In saying this though, there will be times where I say no simply because I am physically unable to do something due to pain or health, so I am sure this will cause more stress as some might think my health is an excuse? As I said, a challenge... but I am not putting my health at risk for a ridiculous deadline anymore.
#4. Reducing waste:
One of my favourite quotes from Gandhi is "Be the change you wish to see in the world". Change is hard and takes patience and a lot of baby steps, but you can't expect the world to be better or changed if you don't play a part yourself.
So I have ordered some produce reusable bags from my Sister-In Law's business which will mean no longer using single use plastic bags for produce. We also plan on using environment friendly bags in replace of plastic bags and I hope to get a compost happening too.... as I said it will be hard, but I do hope it will help the environment.
I feel guilty sometimes being an ostomate, because my base plate and bags aren't biodegradable (that I'm aware of) so even if I used bio degradable garbage bags and buried it, it still wouldn't break down and would be just the same as putting it in the bin. So I hate having a bag that leaks multiple times a day as it means a lot of ostomy products are used and thrown away, and I feel guilty that I am impacting the environment.... but it can't be helped.
So if I can make changes in other areas of my life, it hopefully makes up for it somehow?
#5. See the snow:
I had always hoped to get to the US or Canada and see this in person myself, but while that dream won't happen, I am happy to settle for somewhere in Australia where it snows, there is a romantic log cabin with a fire and somewhere Russ and I can unwind and relax.
I have heard him say almost daily the past month that he truly wants to experience this with me. Watching all the romantic Christmas movies helped I think, but it has had him rather upset realising too all the things he wants to experience with me but not sure if we will.
It is hard sometimes trying to squeeze 80 years of experiences into as much time as we have left.
If you have suggestions, do let me know, I can't fly so anywhere that is easily train accessible or short driving trips in NSW will be best.
#6. Learn something new:
I am doing a course right now cert 4 in screen and media and learning at the moment how to write children's stories.
#7. Write that damn book:
#8. Write a blog post a week:
#9. Write a journal:
All of these writing cues would be kind of life self care I guess, since it is cathartic and all.
#10. Regularly meet with a counsellor:
I guess this would come under self care and taking time for my needs too.
#11. Go Swimming:
Don't worry I plan on being sun safe and have my SPF50+ rashie from SunSoaked and my Sunbella parasol to help me too.
#12. Go Glamping:
#13. Have a holiday:
#14. Explore the Coast:
We still have bucket listing adventures for Brisbane, Sydney, Newcastle and beyond. I am just wanting to see so much!
I am just really hoping to see/experience new places this year.
#15. Renew our vows:
I had always said when we get to 10 years we would renew somewhere fun and overseas, but not sure that dream of international travel is managable or if I could make it to our 10 wedding anniversary.
#16. Get back on our feet financially:
We tried to apply to several other banks who all declined us because we didn't have savings (everything went into our house) and so we had hoped to even consolidate everything into one loan to make repayments easier and more affordable but were declined. Despite having equity in the property. It is hard to have savings when every cent is going into the house, our debt, living expenses, medical expenses and the list goes on.
I am just hoping this year we have better luck and if we can't at least consolidate everything that we can find a new bank for our home loan. I just want out of their grip, just like Britain wanted out of the EU. If we can get a new bank and debt consolidation everything will be more easier, we might even afford a mini holiday.
Part of this is finding a new bank too. I just want and need everything to be tidied up and managable ready for Russ to take over when I die.
#17. See a waterfall:
#18. Try to get my pain under control:
I spent the better part of last year struggling with my pain. I know my doctors are doing their best to manage it, but it really is hard and affects so many aspects of my life. It is debilitating, exhausting, it makes me frustrated and irritable, it messes with my mental health and it just sucks. It is hard to manage getting out of bed most days let alone manage an hour of getting out and about. I missed out on a lot last year and I don't want to miss out on life this year because of pain.
☟ ☟ ☟ ☟ ☟ ☟ ☟ ☟
I know it was a long post, but I thought 18 made sense since you know it is 2018 and all. I feel good that it is all written down but now overwhelmed, which is ironic, but I will do seperate posts throughout the year both here and on social media documenting how I go... it means I can hold myself accountable now since I have told you all about this.
My list honestly could have continued such as "yet to finish unpacking", "yet to manage that room makeover" and so on. I just decided to choose things that will either improve my life, bring me joy or are somewhat achievable for this year.... and if I win the lotto that is a bonus!
Russ asked me what I have been writing/working on the past couple of days, he then rattled off a list of 18 things he *felt* I should do instead which all involved him and were very much Russ focussed or specific. I laughed and said, your list kind of defeats the purpose of several things on my list like taking time for me and saying no and putting me first.
To be fair, his list was most of what I do anyway which was:
Here's hoping 2018 is a good year and that I can do some of these things if not all. Despite spending over 80% of the year in bed last year, the times I did bucket list stuff or was out and about are some of my most cherished memories looking back, those memories I remember on my bad days.
I wish you a HNY2018 and wishing you health, love, success, happiness and clarity this year.
Thank you for reading, feel free to share something you hope to do this year in the comments below:
Thursday, December 14 2017
If you have just read part 1, You will have learned: how heat can affect those who are vulnerable or sick or with an ostomy; what are the different heat related illnesses to look out for; what are the symptoms of the heat illnesses; and lastly, how/what to do under each situation.
NB: It is important to remember that this is just an informative guide only and I am not a nurse or doctor, and any individual circumstances or advisement is based on each person's own circumstances. If you have questions to follow it up with your team.
So in this Part 2, I will be sharing tips to help you be more prepared for the weekend
But just in case you haven't read part 1 yet, basically here in Australia we are preparing for an extreme heat wave which will occur over the weekend and most of Australia will be experiencing temps of 35'c-45'c+.
I have an ostomy, ileostomy to be exact, I also have other chronic co-morbid health issues/illnesses and take various medications which put me at higher risk of sun related illnesses.
I started writing this post a couple of years ago but never finished it in time for it to be relevant, so I am finishing it ahead of this weekend, I only hope it might help someone to be more informed of their own circumstances and to know what to do.
Also keep in mind anyone you know who might be at a higher risk of suffering with the heat, it could be a neighbour who is elderly and lives alone, or it could be checking in on a friend, just to make sure they are doing okay - as the heat can affect many in different ways.
Part 2: Being prepared and tips to surviving the heatwave
I thought it might just be helpful to share different tips to help you get through the heatwave, if you have your own be sure to comment.
Tip #1: Never leave kids or pets alone in a car
Even on a "cool day" this is a no-no. While the temp outside might only be 25'c the temps inside that car can be 55-70'c! It can rise 40 degrees hotter than the outside temperature, so imagine how hot it would be on a day during a heatwave.... scary to think. The damage it can do is increase a child's body temperature, which could lead to brain damage... not to mention what it does to pets too.
I have seen videos and experiements where a chef has cooked a lamb while inside a car, to a vet documenting what it is like in a car. I do not suggest trying it out yourself, there are plenty of videos and information out on the interwebs about the consequences to leaving pets or kids in cars, which can be deadly.
A child left in a parked car under those conditions for even a few minutes can very quickly become distressed, dehydrated and can die from organ failure. If you see anything, you need to act quickly. If you wait, it can be too late.
What to do if you see a child or pet in the car?
You don't have to be an NRMA member to call for roadside assistance if it is in less urgent circumstances. Because of the grave danger involved, the NRMA drops everything to respond immediately to calls where a child is locked in a car.
For pets: Visit Just 6 minutes, a site by the RSPCA which outlines that it takes only 6 minutes of a dog left in a car to die. Here is a factsheet of pet first aid if you can rescue the pet from the car and can wait until the owner arrives. Call 000 immediately and ask what you're legalities are if you can smash the window. But some states you can receive a $200k fine and imprisonment for leaving a pet in the car.
Tip #2: Have plenty of water
You should drink two to three litres of water a day even if you don't feel thirsty.
Tip #3: Have electrolyte replacement on hand
Also important if you don't have an ostomy but have gastro or vomiting bugs during a heatwave too. Hydrolyte is an electrolyte drink which also comes in the form of icypoles too and can be found from most supermarkets or chemists.
Tip #4: Stay cool
If you are outdoors try and find a nice shaded tree and be sure to keep hydrated.
You could also use one of those battery operated hand held mist fans Kmart have them for $5-$10, or a spray bottle with water in it to help.
A cool tip, get it (lol) I have one of my heatpacks in a zip lock bag and in my freezer. This turns into a cold pack and means I have a cool option too. I get my heatpack/cold packs from Chatterbox City.
Tip #5: Keep plenty of drinks in the fridge prepared
Tip #6: Have ice packs or blocks in the freezer
Tip #7: Keep blinds drawn
Tip #8: Wear light summery clothing
Tip #9: Be sun smart and sun safe
Tip #10: Reapply sunscreen often
Tip #11: Don't lie in the sun exposed
Tip #12: in case of a blackout
Tip #13: Open the house at night or evening if a cool change is forecast
Tip #14: Pets or wildlife
Fill a kids clam pool sand pit thing with water and put in the shade and let your dog cool down when he needs to.
Tip #15: Keep your body cool but not freezing
Tip #16: Check in on those at risk
Tip #17: Watermelon
Tip #18: Foods
Tip #19: Wearing a stoma cover
Tip #20: Mashmallows
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I hope that you have found these 2 posts helpful on how to prepare for a heatwave with an ostomy, I know they have been long posts but there was a lot of information I needed to share with you. These posts do not replace the information of that of your nurse or doctors, it is a guide to help inform you of the risks and tips on getting through the heatwave safely.
Please be sure to seek medical attention if you require it and don't delay, heat related illnesses are deadly serious.
More Links through my research:
If you have another tip, be sure to let me know in the comments below. To read part 1, click here
Thursday, December 14 2017
NB: I am not a doctor or nurse, I am sharing information through my own experiences and also that of various credible sites online. The heat and how it may affect you can differ based on personal health issues, so please do speak to a professional regarding how to be safe in Summer based on your own needs. I am sharing the advice I have found and learned in the hopes it may help you to have a better awareness of how to prepare and endure the heatwave.
Here in Australia, we are 14 days into our Summer. We had a fairly non-existent Winter where we live near in northern NSW, and it honestly felt like a mild Summer. I don't recall having to wear a jumper at all and some nights we needed the air conditioning on. But temps were always around 30'c, it was so dry and warm that our grass and plants were rather dead looking - thankfully, after a lot of water and work, the lawn and garden are thriving.
But it did make me worry about the sort of heats and Summer to prepare for, and if going off the predictions for this weekend - I had a right to worry.
So this weekend, particularly Sunday and Monday, most of Australia will be experiencing temperatures ranging between 35'c to over 45'c, we are told this could be the first of many extreme heatwaves we'll need to prepare for this Summer.
..... 14 days in to December, this is going to be a long hot Summer!
Part 1: Knowing your risk and what to do
I know you're probably thinking, "big deal just go to the beach, no biggie" - well it actually is a big deal, especially to those vulnerable in the community which includes:
During heatwaves you can be at risk of heat related illnesses such as heat stroke, dehydration, overheating or hyperthermia, heat cramps. Heat can also worsen health conditions too. During this time the extreme heatwaves can attribute to bushfires or power outages (blackouts) too, so it is important to be prepared.
Summer and heat realated health issues and illnesses need to be taken seriously as it can lead to deaths, heart attacks, strokes and more.
How does having an ostomy put me at risk during a heatwave?
Then add in sweating and extreme heat to the mix and you're more susceptible to becoming dehydrated and suffering due to the heat. Aside from drinking plenty of fluids, also drink electrolyte drinks such as sports drinks or even icypoles filled with all of your delicious minerals and vitamins. Be sure to ask your stoma nurse or dietician what else you can do to help.
With the dehydration issues aside (I will share signs to look out for below) heat can also affect your stoma, such as: by your bag not adhering to your skin properly, using tapes/boomerangs these can help to secure your bags; you might get a heat rash, I know in Summer I get a heat rash where my bag sits against my stomach, I find wearing stoma covers helps with the irritation; Your output might be more watery due to dehydration, so have some marshmallows or gastro stop/immodium to thicken your output. Just remember your spare stoma kit and supplies if you do go out, just incase you happen to have a leak.
It is important to also keep in mind (during the heatwave) that if you are outdoors, doing any strenuous activities such as sports or gardening with an ostomy, you are at risk of heat cramps too. I will explain more about heat cramps below, but essentially due to excessive sweating the body loses water and salts (electrolytes) and when the salts in the muscles get really low these cause cramps. If your electrolyte levels are at risk of being low consider avoiding activities that might put you at risk of heat cramps, at least until you are rehydrated and the weather is as normal as it will be during Summer.
So what is dehydration and what are the signs to look out for?
NSW health says the symptoms/signs of dehydration to look out for are:
So what should you do if you or a loved one are dehydrated? NSW health offers this advice:
So what are heat cramps and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
So what should you do if you or a loved one are suffering with heat cramps? NSW health offers this advice:
So what is heat exhaustion and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
What to do -FIRST AID- according to NSW health:
So what is heat stroke and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
What to do -FIRST AID- according to NSW health:
I know that this is a long and comprehensive guide on the signs and symptoms pertaining to heat related illnesses and what to do in terms of First Aid, in the next post (part 2) I will talk about being prepared and tips for enduring the heatwave.
Again, I am no health professional, I have only done 2 years of Nursing, but I just wanted to put as much information out there from reliable sources to help you be more informed when it comes to the heat and Summer... especially with an ostomy or any health issue, which can make your risk heightened. Please seek medical attention and don't delay, also remember to slip slop slap!
Please be safe and be mindful of how your medications can affect you with the heat, speak to your doctor or pharmacist if you are worried.
Saturday, November 11 2017
CW: This post talks infertility, miscarriage and other heartbreak caused by having a faulty body
If you follow me on social media, no doubt you have met the gorgeous little furball Dusty who is a ragdoll x blue russian kitten. He has the most gorgeous blue eyes and has made every day over the past year filled with love, fun, adventure and cuddles.
Wait, 12 months on, is he still a kitten or is he a cat? I hate to think of him as a grown cat as he is wholeheartedly my little furbaby. I still like to think of him as this tiny little ball of fluff that relied on me.
Dusty has filled a void that I have had for far too long, and I know Russ will say the same.
Dusty is our baby, he is our child we never had and he is a spoiled little shit. I say that with lots of love. He has destroyed everything because he can, he makes a habit out of biting my ankles or backs of my knees, and he just throws tantrums if he doesn't get what he wants.... I love him, I do, but some days he can be a handful.
However, I know the huge benefit Dusty has had on my wellbeing, I believe he is a major part of why I am still here, he has filled our home and hearts with so much love, laughter, joy, and I know the last 12 months would have been a lot more lonlier and isolating if it weren't for him.
Our Hopes for a family:
Russ and I have always wanted children, even before our first date 8 years ago he said "I am looking to settle down, to have a family, to find the one person to spend the rest of my life with". At the time the then 18-year-old me was like "hmm ok we'll see" it wasn't in my life's plan to have kids until I was at least 24, married and had a career and house. But then once we got to know each other, he supported me through several brain surgeries a month after we started dating, I knew there was something special about Russ and when he proposed a couple of months later I said yes. I was excited for what the future had in store for us, it was my chance for a new beginning and hopefully a family.
We had one misscarriage in February Valentine's Day (was the day of our engagement party) and it was the only successful attempt. We were shattered. We were hopeful that we would be a family one day.
Later that year we got married (July), then sometime after the wedding we learned that my dad was terminal with bowel cancer at 39 years of age and that it were a rare hereditary form that it was high probability that I too shared this gene.
My doctors forewarned that I were likely to have cancer myself but wouldn't be until around 30 (boy they were wrong) and suggested we try and plan for a family right away and live our lives before surgery and cancer took over.
Our hopes and dreams as newlyweds of having the family we longed for were shattered now that we were gambling the life of a future child in our hands. We started meeting with geneticists, specialists, gynecologists, fertility specialists and counsellors to fully go over our options.
In 2012, 2 years after my diagnosis of FAP, I had investigative surgery of my pelvic area including my bladder and bowel.
I woke from surgery being told that I was in a medically induced menopause and that on top of the FAP I had severe stage 4 endometriosis and the chances of having a child with IVF was less than 1% and would be too costly.
So it was then that we put the plans of us having a family of our own to rest, we then said we would foster, adopt or get a kitten as Russ isn't a dog person.
In 2013, in the months that I were free of bowel cancer and rejoicing for my new lease on life after having surgery to have an ileostomy, we started training to be foster parents. In 2014, we learned of the new tumour where the bowel used to be and was told that I now couldn't be a foster parent until I had been 5 years cancer free and had a stable life - bringing a kid into a house with a sick parent could be traumatising for the child - so we said we would wait for that day to come.
Which brings us to 12 months ago:
We had moved into our own home, now as home owners we could have a kitten. We were scrolling through facebook one day when a lady posted a photo of Dusty and said he was available in 2 months time (late october). I quickly messaged expecting him to have been sold already, but to my surprise he hadn't found his forever home yet. Later that day Russ dropped by on his way home from work and paid for him and had his first cuddles with him.
Russ was completley smitten and in love.
It filled my heart with so much joy seeing the bond they've shared over the past year.
Dusty cuddles up to me a lot through the day and the night, but as soon as Russell's alarm goes off he shoots off the bed and meows all excitedly as he knows he is about to be fed. When Russ comes home Dusty runs to the door to greet him, Russ will pick him up for cuddles and often rolls around on the floor playing with him.
It is a comfort some days knowing that Russ will not come home to an empty house once I've died, that he will always come home to seomone who loves him and needs him and I think (hope) that Dusty will be a great comfort for Russ.
I know a cat isn't a child, but Dusty is our little baby. He is funny, mischeivious, smart, playful and loving.
Dusty is so clever! He plays fetch. He learned when he was really little that I spend a lot of time in bed when I have bad days, so he learned if he wanted someone to play with that he needs to play on the bed as I am laying down, and it has worked really well.
He at times has sensed when I am upset or anxious, he often checks on me during my bad days, he also sometimes wakes me up by poking me in the face with his fish-on-a-stick-toy, but he has made me feel full and loved. He is so protective of me it is adorable.
I now feel like we are a family and we have Dusty to thank for completing our lives.
I know I post a lot of Dusty posts on social media, but most days he is the best part of my day and I want to share that with the world.
I always had been told that pets are theraputic, but until this past year I wasn't a believer. I get asked why I haven't died yet and what has changed in the past year and my answer is Dusty.
Friday, October 27 2017
In July 2015, my husband and I met with a local bank, well a credit union, because we were told that they put their members first above their profits and were meant to be a great bank to deal with. We told the bank's home loan manager that we wanted to buy a house asap as I was going to start chemo in September and we really wanted to get settled in our own home sooner than later (knowing during chemo wouldn't be the ideal time to move house). We told him that I was terminal and we just want to start the next part of our lives. We wanted to make a home our own. We said how we wanted a level home as I am in pain and struggle walking stairs or distances. It was this employee that ran the sums and said we could build as it were cheaper to buy a house, so we did!
Now, over 2 years later our bank is using the fact that I have cancer and take pain medication against me, all because we asked for a better rate.
We are currently on a 4.85% interest rate. We keep applying for a cheaper/better rate and they keep declining us... using my cancer as a reason.
This isn't the first issue with the bank this year.
They changed their BSB number and who hosts their cards, as a result EVERY member got new cards which now won't work as visa debits online for purchases which is infuriating. The old cards worked fine. Then the new BSB also meant that no major banks were recognising this new BSB and for months we couldn't direct transfer money from our ANZ account to the credit union which our only option of paying our mortgage was by direct depositing into the offset account and we got charged fees each time.
THEN....☟ ☟ ☟ ☟
We approached the bank to ask for the 3.5% fixed rate they had advertised (was a limited offer). We wanted to fix the loan for financial security and knowing what the loan payments were so we could better set out weekly/monthly budgets; we also wanted to fix the loan due to the uncertainty in the market predicted over the next couple of years, rates were expected to rise, and we wanted the best rate possible.
THEN...☟ ☟ ☟ ☟
The bank said as a counter offer that they would allow us to switch to their OMG home loan (a limited time offer) of 3.8%, so saving 1% in interest to what we are currently paying. Told it was a straight process since we had signed the documents for the fixing and that it would be done without any issues. That was on the 6th of October
THEN... ☟ ☟ ☟ ☟
On the 23rd of October, I got an email saying "there is no definite answer if this variation change will be approved," the email continued "they have expressed concerns regarding your health, you mentioned do to me that you regularly take pain medication to help with your current circumstances, they are worried that you are not capable to sign legal documents yourself and have requested that you have a legal representative or Power of attorney sign on your behalf."
I replied that my husband is my power of attorney and that despite taking pain medication it does not interfere with my cognitive ability or influence my thoughts. I said I run this blog that is well read, I write for other sites/publications too, and that I also launched a magazine that I write/design/edit 100% myself and that I take pride in my work.
I said my Doctor would happily write a letter of support to state that my mind is in good health and that there isn't any issues cognitively.
THEN...☟ ☟ ☟ ☟
The response was " I am sorry that bcu has questioned your cognitive ability, we did not want to come across like that at all, I honestly do feel horrible. [insert institution name] will always have the best interests of our members and that is why we have requested the documentation. You have mentioned previously that you do take pain medication to help, and that you have forgotten if you had made payments to your current loans."
The last comment was taken out of context, when trying to consolidate our debts there was one credit card that had a late fee for the month and when this employee asked why I explained "I have been unwell and had a lot going on healthwise I simply forgot if I had paid it on time and realised the following day but it was a day late and got a fee which is all there".
I forgot one payment (on a card that isn't through their bank), now they are using this against me saying I am forgetful because of having cancer and taking pain meds and that I am unable to do my own banking.
I was told that my banking would need to be done with someone present overseeing things, that I would lose my online banking privileges and my card access too, because you know, apparantly I am not thinking clearly because I am asking for a cheaper rate and I clearly don't understand what I am wanting to do.
THEN... I received this email today☟ ☟ ☟ ☟
To go ahead with offering the lower interest rate "we would require that the variation be signed in front of a solicitor (at your expense), as you have mentioned that you don't believe your cognitive ability has been affected by your medication you are taking we need this to be signed in front of a solicitor to ensure that you are fully aware of what you are signing and they will be required to sign the document stating that you are aware of what you are signing."
To make it more patronising the email said "again we apologise if we made you feel like we are judging your circumstances".
Uhhhhh, how are you not judging me?
You are telling me that I am unable to think clearly for myself and that my cognitive ability is impaired, you are telling me I am not of sound mind enough to be ALLOWED to do my own banking, you are telling me that you believe that I don't understand what I am signing up for simply because I am requesting the lower interest rate to save myself money.
Next, are you going to tell me that the entire basis of your argument that I'm not of sound mind is: because I am Aboriginal? Or is it because I am a woman? Because, that is as ridiculous as you saying that I can't be able to think for myself because I have cancer. It is being prejudicial, patronising and discriminating.
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I feel so trapped, I absolutley loathe this bank, I wish I could afford to take my loan elsewhere.
If I win lotto tomorrow it would be 21 million reasons to not bank with them!
But it is complete and utter BS that they claim to be putting the best interests of members at heart, because all they have done these past months is cause me nothing but undue stress.
I take pride in every single thing that I do in my life, and a large part of that is because of my brain. I have felt my self worth and self esteem feel threatened with each email I receive telling me that I am no longer able to think for myself, it truly hurts me.
I can tell you that my husband is not thrilled about their treatment of me either, and if it weren't for having the home loan with them and being trapped, I would be changing banks ASAP. I will let you know the outcome.
I had given the bank until today 5pm to get their shit together, instead of working with me within reason they continued to patronise me and undermine me. I will be going to the financial ombudsman on Monday and seeing what they have to say.
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.
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.
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!
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.
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.
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
Do you have a tattoo? Was there a meaning behind it?
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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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!
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 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
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.
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.
Tuesday, June 13 2017
“Life is 10% of what happens to us and 90% how we react to it”
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.
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.
“Life always offers you a second chance… it is called Tomorrow!”
Sunday, April 09 2017
One thing that I have noticed time and time again since I have been sick and spending a lot of time in bed, is that I often felt uninspired and unmotivated. I feel if I wake up happy or feeling somewhat inspired I usually have more energy to tackle the day.
It all started when I was having chemo, I was so sick from chemo that I spent almost 6 days out of 7 in bed and feeling like absolute shit house. My room didn't inspire me at all, I had a beautiful and comfy bed (a must when you're sick) but as we were renting hubby was reluctant to let me make the room my own. We knew we would eventually be moving house and it was just more things to have to move.
So in June I stopped treatment and entered palliative care.
A week or so later I went into pillow talk and my brief was "I need a quilt cover that will inspire me, motivate me but make me feel happy". I found the perfect quilt with the thanks to a sales assistant, who was undergoing chemo herself at the time and she really understood how important it was for me. I wrote away thanking her and Pillow talk HQ.
It has been 6 months now since we moved house and aside from the quilt and a print on the wall, it still felt like I was missing a little bit more. I had a bed side that felt so clinical and reminded me of being sick every time I woke up or rolled over, it was covered with needle bins from my clexane or boxes and sheets of tablets strewn over. It really reminded me every day that I was sick, and it had really gotten me into a funk of late.
So I had been planning a little bedside table makeover for a while, well had talked about it.
It is school holidays and 2 of my siblings (Macka 14, Carson 12) came up to help me do things around the house, so we decided now was the time to makeover my bedside table but also my bathroom vanity.
So I am sure it ended up being the most memorable house clean or bedroom makeover they've ever experienced!
We emptied all of the contents off my bedside table into a basket to go under the bedside table for ease of access, then we dusted it down and went about the house finding items I had been collecting or already had.
Some of the items had been found on clearance or at a cheap price.
So I found some books on the bookshelf that I got for Christmas and have been meaning to read, and from all the images I have seen of "pretty bedside table stylings" it usually has books stacked on. The marble canister is good for hiding things like remotes for the fan, tablet sheets or jewellery.
My brother said it had to have a necklace in there too.
So this is the after, and while I am no interior designer, I am feeling pretty proud of how this looks... and I don't feel like I am reminded of being sick everytime I roll over.
So now the memorable (and humiliating) part to the story....
The basket wasn't fitting in the cupboard when we knew it should and was as if something was blocking it. The door was closing but was still ajar.
My sister reaches behind the basket and pulls out a red dildo (I hadn't seen it in about 5 years and didn't care for it) so I had no idea that it was in there, so my face I assume was as red as the adult toy.
I still feel so embarrased, haven't felt so humiliated in a long time, but it will be memorable story to tell in many years time or after I am gone. I did try to say it wasn't mine, they laughed and said "what it is Russell's?" which had them even more confused when I said it wasn't... how embarrassing indeed!!
"Hey, remember that time at Talya's when we were cleaning her room and found a giant red dildo in her cupboard".
I can now pass on knowing at least I have left them with one solid and hilarious memory.
Note to self: KNOW where you have hidden such toys, preferably in a safe place no one will EVER find again.
Sunday, March 05 2017
It is my birthday in 5 days and I am struggling with it, this is the first birthday in 5 years I have wanted to celebrate it. I am having a birthday of my dreams with items on my bucket list e.g enjoy a cocktail again, have a high tea for my birthday, do a flower crown workshop. It was meant to be a surprise vow renewal, but Russ shut that idea down quick smart.... he still claims to hope I will somehow miraculously make it to our 10 year in 2020.
I know it sounds weird that this is the first birthday in 5 years that I have wanted to celebrate, even though that has its own rollercoaster of emotions to accompany it.
This birthday is my 26th birthday but it is also very, very likely to be my last.
For the latter reason, I tried to put aside my issues and feelings to try and have the best birthday I possibly could not only for myself as I feel I need to be shown I am loved and that I matter lately (that is a whole story for another time) but I also knew that THIS was important for my family and friends.
I was told last month that "I don't understand what the issue is with your birthday, you are the only one feeling this way".
It kind of made me feel a little angry that my feelings weren't valid and that I should just suck it up, but this isn't that easy.
You see my birthday was always something I shared with my dad and we would always do a combined birthday, my birthday was the 10th and his the 11th. It was always precious moments I shared with him.
Why I find my birthday hard ☟☟☟☟
It was March 10th, 2012 when he actually started dying. He was terminal with cancer, but that day - my birthday - was the day he started his dying process.
It was also my 21st birthday.
I had this whole day planned, spent over $3000 on it and family were travelling all over for the day mostly because it was my birthday but a big part of it was they knew it very well would be the last time they would see my dad. I knew that, they knew that, he knew that.
So that morning I arrived at 7am to my dad's house to be greeted by my nan who said "He doesn't want you to know this, but he probably won't make it through the day". I went in to see my dad and to sit with him. He looked at me and said "you f$cking know don't you?" and he started yelling at me. I knew this was because he was frustrated, he felt like he had lost his independance and the one request he had to everyone was to not ruin my birthday by telling me, he was so selfish that he wanted his daughter to have a great 21st birthday, but he was angry.
I was so upset I jumped back in the car and drove back home to drive back ready for the party. It was a 3-4 hour round trip and I used the excuse I forgot my outfit (which I did). I drove the whole way crying, shaking and at one point pulling over because I was having an anxiety attack and couldn't see. I wasn't alone, I had Russ with me who was talking reason to me.
I had to get all my tears out before I returned to see him again, he got angry if people cried and gave him pity so you had to hold it in or if you felt you couldn't he didn't want you visiting.
So I got back to his place, I was eager to cancel the party because I wanted to stay with him and do something different.... but he wouldn't let me. He didn't want me to miss out on my birthday and he tried his best to get there but sadly he couldn't.
I understood but boy it hurt.
I got to my party and felt so guilty, I felt like I was the worst person in the world and that everyone would be judging me for being there instead of with him. I made an appearance and snuck outside and just cried for ages. My best friend came looking for me, she had a drink in her hand and she told me to take my time. I had a couple of drinks of liquid courage and went back in to face everyone.
I had a few more drinks and started to loosen up, I started to dance and had fun, I was surprised the DJ knew all the songs to play and I was having such a good time.
Then it hit me, I felt the guilt again and then I started crying all over again.
Midnight came and the venue needed to close and I headed to dad's where I was meant to spend the night but knowing he needed his rest my friend let Russ and I stay there. He was waiting up for me and gave me my present, it was this beautiful silver heart bookmark engraved for my birthday.
He proceeded to tell me that he was texting the DJ all night the songs and he was telling my dad how I was, he knew already that I disappeared early in the night and was pretty upset but I tried my best to have a good night.
Next day was his birthday and we sang happy birthday via webcam as his room was too small with all the hospital equipment to fit over 20 of us. He managed to get out of bed that day and walk around with assistance, and I thought maybe he wasn't dying afterall.
Later that night it was only Russ, my brother, dads partner and I that were there when his breathing slowed right down that I thought it would stop and he was losing consciousness. We called the ambulance and I thought he was going to die. He held my hand and talked to me. He told me he was sorry and that he was proud of me.
When the ambulance officers came they told us to make ourselves familiar with his end of life wishes and to have the plan at hand, knowing when the time comes we weren't to do anything as he was DNR.
The next day I was having severe endometriosis pain and realised I had no pain meds with me and needed to drive home, as Russ didn't drive I had no way of getting back to dads so went home to rest. I got the call to say the doctor had been and they said he might have a day or a few days but definitely need to get everyone to say their goodbyes.
He died overnight, getting the call at 4am and jumped straight in the car and drove down.
He had always said he wanted to make it to at least see his oldest turn 21.
Why I struggled since to want a birthday ☟☟☟☟
But each year since, I would get rather depressed leading up to it. I had a lot of guilt and I felt traumatised from the events around my 21st birthday and that my birthday never felt the same, I felt like I was missing a piece of me.
So I decided not to celebrate my birthday and would use this time to go away with Russ somewhere that I could just escape everything and everyone, I know it is selfish but I really can't cope with the overwhelm of feelings. But it is also because I just can't cope with this feelings, so I avoid them, I am in denial that I need to.
Fast forward to this year, after the suggestion of family they felt that I needed to do this for them, so I have been trying a lot to make this a memorable time for them and hopefully myself, but it is hard when everytime I feel a little excited I then feel this massive overwhelm of guilt and I start vomiting. I can't help but hate myself for trying to want a good time when these feelings keep coming back.
I know no one understands why this time of year isn't easy for me, but it is so hard... it is hard to not feel survivors guilt or that I shouldn't be happy so close to his days.
I am trying my best but I am also struggling.
So I am stressed, I have $800 worth of things needing to be paid for before Friday. I applied weeks ago for a special terminal illness grant to be approved as a dying wish and still haven't heard back even though Russ has sent numerous emails. All the vendors demanding their monies and I am so upset that it won't be the perfect day I dreamed of. I have the cake $200, food at the venue $240 or $6/head and the flower crown workshops of $400 ($20/head). I know guests are paying for their own cocktail high tea in lieu of gifts ($35/head) as there was no way I could afford that too.
Didn't help that last week my cake maker pulled out and had to find a new one, which I am loving the cake.
I just worry I won't have enough time to wrangle money together if they don't let me know ASAP an outcome, I need to have time to either find things to sell or convince Russ to use one of the credit cards which means also getting the bank's approval as it will affect the outcome of our homeloan review in the coming months.
Besides, Tuesday I have an MRI and that has me rather anxious and worried.... just keep asking them to keep the results until after my birthday...
I just want to try and have one LAST memorable, uneventful, drama free birthday! Is it too much to ask of? BUT wish me luck, please, that the rest of this week goes smoothly!
So if you have heard me talk about why I am struggling leading up to my birthday, this might explain it all! But it is a comfort knowing that I will see him soon, life hasn't been the same since.
I miss dad so much ❤
p.s pretty keen for my first drink in 5 years, just hoping it doesn't trigger a pancreatitis attack or interfere too much with my medications... drink of choice is a fruit tingle
Sunday, October 23 2016
National Bandanna Day is coming up, and is this Friday the 28th of October. It is a day where people nationwide are encouraged to purchase and wear bandannas with the proceeds raised to support a charity called Canteen. You can read about the work they do by clicking here, or to read how Canteen has helped me personally, click here.
In the lead up to National Bandanna Day, I was approached by Canteen to be an ambassador (always wanted to be one) and talk about my cancer story and how canteen has helped me with various media outlets.
One of these outlets was a local ABC radio station, and I had always wanted to be interviewed on radio so I jumped at the chance.
Russ, my husband, was present with me the entire time I spoke and after I ended the call he praised me for how articulate I sounded and that he was proud of me.
I was a little nervous, but I made sure I was prepared.
I thought I would share 7 tips that helped me to stay calm and level headed during my radio interview, and I hope that they too help you.
#1. Find somewhere quiet to sit
#2. Remove any distractions
#3. Know your stuff, and know your 'why'
#4. Don't have a piece of paper to read off of
#5. Have a bottle of water handy
#6. If able to, ask what questions will be asked
#7. Know the name of your interviewer
I know these are only a handful of tips, but these really helped me in preparation for my interview and I hope they help you. Feel free to add your own tips in the comments too.
Also, keep an eye out on my facebook page for when the interview will be aired as I am not too sure yet.
P.S Not sure how to wear your bandanna or how to fold it? Click here for a HOW-TO printable guide
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.
Sunday, September 04 2016
I often wonder if my dad's bowel cancer had of been detected early on, would he still be here today? I believe that he could have been, especially if it hadn't metastised yet.
I also wonder, would he have needed a stoma and if he would have been okay with needing one if it meant he would still be alive.
Then I imagine my dad and I twinning at being stoma bag buddies, and sharing a humour about life with a stoma that only we would understand and appreciate.
My dad was one tough bloke, he was WAY tougher and stronger than I could ever be. He hardly complained about being in pain, and although you could see in his eyes he was exhausted, he would still make sure that he was there for us kids.
But, I know how hard living with a stoma can be, especially in those first few months.
I know if my dad were given the choice of life with a stoma or death he would have opted for living, he would have done anything for his kids. He would have made jokes about having a leak in public, and gone "well, fuck. Shit happens aye".
He probably would have even said something like "don't scare me like that... I shit easily".
But something totally corny and dad jokey would have been "talk about de ja poo... I've heard this crap before"... or "Did you know that diarrhea is genetic... because it is running in my jeans".
Dad was a true comedian and could turn any situation into one that could make you laugh... I think he would have continued that humour and his positive outlook through having a stoma too.
I like to think that is where my strength, ostomism (optimism with a stoma) and humour come from.... and in a way I feel that he helps me to get through each day by asking myself "what would dad have done/said".
Even after his death my dad continues to inspire, motivate and give me the strength I need to get through my day.
Happy Father's Day dad.
Tell me, is there something that you inherited or share an interest with your dad?
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, 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…
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:
*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.
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?
Wednesday, July 13 2016
[this post may contain spoilers, proceed at own risk]
I was watching Winners and Losers last night (the second episode of what will be the final season) and I felt rather annoyed by a particular conversation that seemed to have been missed on the show.
Jenny found out that she was pregnant (was a surprise/shock) and that she later learnt that it was ectopic.
But there should have been a conversation with Jenny and her husband about their options they have for planning or 'safer planning' for a family when she carries a genetic cancer gene mutation.
We learnt earlier in the series that her mum and sister both had breast cancer, then Jenny discovered that she too had the gene and she opted for the double masectomy... I always thought the writers did so well in those episodes that followed her diagnosis and surgery and that Melissa Burgland conveyed the emotion really well, I especially felt that I could relate.
But I felt really disappointed watching it last night that there was nothing mentioned about speaking with a genetic counsellor regarding family planning or anything.
I just know with my genetic cancer gene mutation that I had to consult with so many doctors and specialists BEFORE we were to start trying for a family, and to really know our options and risks going forward. Options for us included IVF where there is a test that can be performed on the embryos to see if they have the gene mutation.
I just know for me, a big responsibilty I felt was that I didn't want to be careless and knowingly pass on this gene knowing what my family (dad and sister) along with myself have gone through, and there would be that stress and worry of not knowing if they inherited the disease until they were at an age to be allowed to be tested... I am not judging those who have the disease and have children knowing the risk of passing it on, but I just know for me I would find it too hard and stressful knowing that I had options available to me.
I just think that the writers should have added in a discussion of some sorts and work with reputable sources to encourage awareness and to talk with someone (either her partner/family/specialists) about the risks or safer family planning.
I know it is just a show and it is fiction, but they did their research in the doctor prescribing a single dose of methtrexate to treat the ectopic pregnancy, but surely they could have done research about family planning when you have a known cancer causing genetic mutation... and that is where I felt the show really let me down.
It would have been nice to watch the show, and watch how the conversation would go and know somehow that I wasn't alone in my conversations with my husband/family/specialists about planning for a family with this disease.
Will be curious how the story pans out... but given it is the final season we may never know if the gene stopped with her or if she passed it on to her future offspring.
Speaking of offspring, I am LOVING this season!
Monday, July 11 2016
Canteen is an organisation (charity) that provides support and help to young people (like me) aged 12-24 to help them on their cancer journey. You might have heard about Canteen through their National Bandanna Day campaign that runs annually each October.
When I was younger I had a beautiful little sister who was fighting her own intense cancer battle, and canteen helped our family out with support and ever since then and after my sister's passing we continued to support Canteen through their National Bandanna Day, our way of saying "thanks for the support".
It wasn't until after my dad died in 2012, that we realised that Canteen was there to help us through our dad having cancer and then dying, we thought it was just for people who had cancer and didn't know we could join too.
It was a few days after my dad's passing and my siblings weren't coping, so I looked into signing us up and a short time later we went on a 'New Member's Camp' where we weren't the only new kids on the block.
What I didn't know at the time was that I had found a place where I belonged and could turn to when I needed support... I also didn't know just how much I would come to rely on Canteen.
After the camp I kept in contact with the staff at my local division and accessed the counselling support.
Late 2012, I was told that I had early signs of bowel cancer and that I required my bowel to be removed in the coming months. I turned to Canteen for help and support as I made the decision to have my bowel removed and live the rest of my life with a permanent ileostomy.
Because of my surgery I didn't go on any programs during 2013, mostly out of anxiety around living with a stoma but also I was in and out of hospital with pancreatitis that I just kept missing out, which again happened during most of 2014. I was going on an over 18's program but instead was in hospital the day before camp started.
During this hospital admission they did a scan and found there was a tumour, I then travelled backwards and forwards to Sydney for consults with specialists and having scans done.
Canteen were fantastic, the staff touched base with me each week and when they were in the local area they would invite me to coffee to see how I was going.
I decided to say thank you to Canteen for their support and organised a Halloween themed high tea fundraiser, which was an absolute blast and success raising $1200 for Canteen and is an afternoon that guests still talk about.
Then in early 2015 I had a PET scan and it showed my tumour had now doubled in size, I had a new tumour growing and that I also had thyroid cancer.
I turned to Canteen a lot during this year, and I was involved a lot as a camp leader or helping to plan different programs (even though I wasn't able to attend for health reasons). I offered up my graphic design services and would design different flyers and posters or invites for camps, I loved not only having something to do but to help in my own way of saying thanks for being there for me.
I actually just got home from an Over 18's program, and I am so glad that I went... During the past fortnight I was told my chemo was to be stopped and that there were no more treatment options going forward and that palliative care were called in to help manage my pain and symptoms and to help me feel more comfortable.
The past fortnight has been extremely tough to deal with, and I just really needed to escape and get away and just talk to people my own age with their own experiences... to talk with peers who 'get it'.
I had so much fun on the program, and despite being in a lot of pain I really enjoyed myself. The staff were amazing going above and beyond to help me, and the member's who attended were so kind and accepting.
To be honest, Canteen is the one place that I feel accepted and valued and not judged, and I think that is why Canteen works so well.... it is a safe place for you to explore your feelings and dealings with your cancer journey and you are surrounded by people who are as well.
I honestly don't know how I would have gotten through and navigated the last few years without the support and help from Canteen, and for that I will always be thankful and appreciative of all the times that Canteen was there when I needed them.
I age out of Canteen this year, so that was my last camp. I still plan on keeping in contact with the staff and offerring my graphic design services. But I have made some amazing friendships through Canteen that I will continue to cherish and keep in contact with.
If you are a young person aged 12-24 in Australia, or know someone who is affected by cancer (whether it be themselves, their parent or sibling who was/is sick) please let them know about Canteen by clicking this link.
Saturday, July 02 2016
I had my scan a month ago to check on my tumour growth and if it was responding to chemo or if there was any new growth. The scan showed a couple of new developments and one massive surprise.
I found out that my tumour was stable and showed no new growth or shrinkage (the surprise).
The two new developments were that I have a 17cm mass on my ovary and I also have 2 large blood clots (Pulmonary Embolisms) in my lungs.
I was called back to the hospital that day and taught how to inject myself with clexane needles twice a day. I was in shock and rather upset and my amazing husband took over and has since been giving me my twice daily injections.
I was so shocked as it was an incidental find and if it weren't for the oncologist bringing forward my scan by a fortnight I could have died... and as much as I thought I was okay and at peace with it....
Turns out I am not ready and that I still have so much life to live.
I thought maybe I did something wrong, but my doctors reassured me that I didn't. Apparantly the chemo and cancer combo can lead to blood clots due to my blood not clotting right... the only symptom I had experienced was a cough and shortness of breath.
So I have to have my injections twice a day.. my husband comes and gives me one in the morning before he leaves for work (along with my thyroxine medications) and then the other is at night before bed. I need to have these injections for at least 3-6 months.
Some tips if you need to have clexane injections:
#2. Find an area that has more fatty tissue so you can kinda pinch the skin, I find the fattier part of my thigh hurts less
#3. After you receive the injection gently rub the area or tap on and around your thigh, it helps to relieve the pain and I don't know how but it just really helps to relieve the sting.
P.S if you are experiencing chest pain that is new or shortness of breath that is also new, please don't hesitate in seeing your doctor or presenting to the emergency department at your local hospital
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.
Sunday, April 10 2016
We know that chemo can be toxic to ourselves and we can get sick, but did you know that it can make those around us sick too if they are exposed.
Before I started chemo, I was invited to attend a chemo education session where I learnt things about treatment, nutrition and what it means to be cytotoxic.
When you have chemo you are considered 'cytotoxic' for the next 7-10 days. This means that your bodily fluids such as urine, tears, sweat, saliva, semen, poo and blood contains chemicals that can be toxic to others if they are exposed to it. They can be near you and not get sick, just as long as they don't come into contact with your bodily fluids.
So when you have chemo it is important that you be mindful of what you're doing to help protect those around you.
Here are 10 steps I take to ensuring the safety of others around me when I am cytotoxic
#1. Double flushing the toilet with the lid down
#2. Try and use one toilet for my use only
#3. Don't share drinks/cups
#4. Don't share food/utensils
#5. Use condoms if having sex even if it is just oral
#6. Double line your garbage bags when disposing your stoma bags
#7. Make sure you have disposable gloves handy
#8. If you are holding a newborn
#9. Wash soiled items seperately
#10. Wash your hands and make sure others do too
Monday, March 21 2016
Reading that heading, are you thinking "Wait did I just read that right?".
Well my friend, you certainly did.
Firstly, let me start by saying this is nothing sexual. Not that I am judging anyone who is into that sort of stuff... but my doctor advised me I needed to start fingering my stoma for medical reasons not sexual.
You might recall me complaining and sharing the recent experience of my new stoma here on my blog and on social media, and if you've been following from home you'll know that this new stoma is a bitch and is tricky and is very leaky!
One of the problems with the stoma, is due to the remaining tumour being completely adhered to the stoma it is pulling the stoma down from the surface and making it retracted.
Imagine a cone or a funnel, how you have a bigger and wider opening towards the top but at the bottom/base it is a smaller and more narrower hole.
Now imagine that small hole is under a lot of pressure and is getting smaller and smaller because it is being pulled down.
Imagine that hole getting so small and closing up that passing any sort of waste through the stoma would become rather painful... That smaller hole is the part of my small intestine (small bowel) that USED to be stiched to the surface of my skin, and is now sitting some 5cm below the surface of what now looks like a belly button hole.
.. well this is what I am facing with my new stoma. There is a high chance that I could need corrective surgery (which might only make things worse) if it gets to this last stage.
But my doctor told me I can avoid this by doing one simple thing each time I do a bag change or at least once a day... and that is fingering my stoma!
It doesn't have to be rough or anything, but if I put my finger down into the stoma and just sit it there it should help to stretch it out. It does kinda hurt, it does bleed a little and there is often a huge gush of waste coming out.
But as much as I hate doing it I also don't want to be in the position where it will close over an become painful (or I should say more painful).
I just wish I could go back to how things were with my old stoma... I am really missing it!
disclaimer: please don't go stretching your stoma hole willy nilly without the guidance of your bowel surgeon or stoma nurses, I am simply sharing my recent experience in the hopes of helping someone in a similar situation feel less alone or feel empowered enough to ask if it is something they need to do to help their own difficult stoma.
Tuesday, February 23 2016
I know having a loved one in hospital or unwell can be rather distressing, and I know more than anything just how much you want to help them get better.
I myself, have spent a lot of time in hospital and after a recent surgery with a hospital stay I thought that I might give you some ideas or suggestions on how you can support a loved one while they're in hospital. I guess these could even apply to when a loved one is at home chronically ill or unwell.
When a loved one is sick, you don't have to buy flowers to show them you support them. Here are some ideas to help you next time:
Suggestion #1. Calling them
Suggestion #2. Flowers
Suggestion #3. Food
Suggestion #4. Make them feel at home/comfortable
Suggestion #5. Respect their privacy
While these are just a few suggestions I know the list could be longer. So if you have a suggestion that you think would help others comment below and let me know. I would love to hear your ideas of what makes you feel more supported when in hospital.
Saturday, February 20 2016
For those who have been following my facebook page would know of my struggle the past several months involving a rather aggressive and fast growing Desmoid tumour that was causing me issues and making me sick.
I haven't blogged much about my tumour and experience, just been mirco blogging on my facebook page. But today, I am wanting to write about my most recent experience which involved having the tumour removed and having a new stoma created.
According to the Desmoid Tumour Research Foundation a definition of a Desmoid Tumour is that these "... are tumors that arise from cells called fibroblasts. Fibroblasts are found throughout our body and their main function is to provide structural support and protection to the vital organs such as lung, liver, blood vessels, heart, kidneys, skin, intestines etc. and they also play a critical role in wound healing. When fibroblast cells undergo mutations they can become cancerous and become desmoid tumors (also known as "aggressive fibromatosis")..."
These tumours can be slow growing or extremely aggressive (which mine are) and can become life threatening when they locally invade or restrict on structures, organs or blood vessels.
I had two tumours (now I have one) both in my mesentery and one is also deep in my abdomen compressing on my kidney and also presses on my stomach and back often causing me pain when I walk short periods or am standing for a few minutes. Hell, even having a shower can quickly become rather painful and tiring! For those at home wondering how big this beast is, it is the size of a watermelon... but this one won't be surgically removed (too risky) and is the one that I have been told will eventually kill me over the next few years and the aim of the chemo is to try and shrink it or stop it from growing before it causes too much damage.
The tumour that was removed last week was the size of a rockmelon (see image below of side on view of my stomach) and has since left me with not only a huge cave-in of my stomach but a new stoma which I am trying to adapt to but it is proving to be a challenge.
Surgeons are usually reluctant to remove these tumours due to their aggressive recurrence and because the more surgery you have the more chances for more tumours to appear, especially when you have a genetic pre-disposition to these tumours caused by FAP.
But, the reason my tumour was removed was because it was dying inside (turning necrotic) and was causing infections, ulcers and fevers and it was decided that it was best to remove the tumour now in hopes of preventing further issues and to make me better enough to FINALLY resume chemo to work on the other beast.
So I have been in hospital since New Years Day back home in Coffs Harbour with the exception of a week where I got to go home, but then I was readmitted there for 10 days while I waited for a transfer to Sydney to have surgery. So I got to Sydney via air ambulance on Tuesday the 9th of Feb and had my surgery on the 15th of Feb.
The surgery went well and I was up walking the next day and had impressed the doctors so much (and myself for that matter) with how well I was doing that they were ready to send me home last Thursday. But my swelling went down on my stomach, and my stoma changed too and my bags no longer were sticking and getting a good seal so it kept leaking.... and leaking... and bloody leaking!
In a 24 hour period from Thursday to Friday I had experienced about 8-10 bag changes, I lost count, and my poor skin was so raw and sore it was quite uncomfortable. Then Friday to Saturday I had almost 24 hours without a leak, then the last 24 hours have experienced about 6 bag leaks and my skin is so sore I just want to cry!
It is so hard adapting to this new stoma, especially when it is so different comparitatively in size. My old stoma I miss so much as it worked and very rarely leaked, where as this one is so small and it is now sitting in a crease in my stomach where I never had a crease before the surgery, but worst of all it has become retracted and is under my skin.
As I said, I am REALLY missing my old stoma and struggling to like or adapt or feel confident with this new one. I know I needed my tumour removed and I know long term it should prove beneficial, but I am struggling to see the ostomisticness right now... which I feel like such a fraud as my blog is called 'optimism with a stoma'...
I know I have gone through this before, it was 8 weeks of constant leaks before I found the bags that worked for me and then I fell in love with my stoma and the new life and freedom it gave me... but I miss that freedom and confidence and just hope I can perservere and one day will fall in love with this new stoma too.
It was almost three years that I had my first stoma, it had become such a huge part of me and who I am and I know this will sound strange but I do feel a little bit of grief and loss over my stoma. I am not only grieving for my stoma but my independence, dignity, confidence and freedom.
If my tumour hadn't attached itself to my small bowel and stoma I wouldn't have lost such a HUGE chunk of small bowel, and they would have had more bowel to work with to create this new stoma rather than opening me up to dig more bowel out and opening me up for more risks of tumours and complications.
I know it is a process of trial and error, I just have to get through this next bit to fully accept my new stoma.
Sunday, December 27 2015
Late last year, I decided that I would organise a fundraiser event for a charity I have been personally involved with the past 3 years. This charity is called Canteen and they help support young people (like myself and my siblings) who live with cancer in our lives.
We first became members back in 2012 after the loss of our dad to cancer, and they have been a huge support to me while I have been on my own cancer journey. So I wanted to do something to show my appreciation and have a bit of fun, and that was to host a Halloween themed high tea!
The turn out was great, so many dressed up and we raised a total of $1200!
To the attending guests they thought the event ran smoothly, but for me I realised so many things I could have done differently and I thought I would share these with you all. To see the full page of the event sponsors and images courtesy of the professional photographer who donated his time to run our photo booth, click here now.
10 mistakes to avoid when hosting a fundraising event
#1. Give yourself plenty of time to organise it
#2. Have a committee or team to help you
#4. Make sure your phone is charged
#5. Get an MC
#6. Time management
#7. Find monetary sponsors for the event
#8. Don't forget to thank your sponsors or supporters
#9. Get the support of local media behind your event
#10. To save costs do as much DIY as possible, trust me it can still look awesome!
I also made the trophy to be awarded to the best dressed, which I found some plastic couldrons and plastic mouldable skeletons and created a funky trophy.
I also used the plastic cauldrons to make little gifts of lollies for those who would win the group trivia games.
So if you're wanting to host a fundraising event, I highly recommend it! I still have people telling me over a year later how much fun they had and even on the day I had people asking when the next event would be held. I had hoped to run it again this year as an annual thing but I have been too sick to do it this year and especially undergoing chemo it was just too much pressure I was putting on myself and hope that one day when my health returns and I am in a better position I will host an event again.
Monday, November 16 2015
Hi and welcome to Chemo Diaries: My experience, which will be a monthly series of posts written like a diary about my experience as I undergo chemo. This is the first month post and is also for the month of October, 2015.
Thankfully there is heaps of information out there to help understand the type of cancer treatment you need and how it will effect you. I have found CanTeen have some great resources for helping me to understand what to expect from my cancer journey (even booklets on fertility after treatment). Other great places of information I have found are from the Cancer Council as well as the chemo education sessions I attended at my local cancer centre.
As I read in the Canteen booklet "Your guide to dealing with cancer ages 16-24", chemotherapy (chemo) is one of the more commonly used methods to treat cancer and it works by using drugs called cytotoxics to kill or slow the growth of cancer cells. As explained in the booklet (and from my own experience) chemo also kills your good cells too, making you feel very sick, fatigued, and also why you lose your hair (I am yet to experience hair loss). I also experienced really painful mouth ulcers recently (was so bad I couldn't eat, read more about that below).
Initially I was planned on having monthly doses of Caelyx but after a severe (almost-died-reaction) to it my oncologists decided on weekly doses of Methotrexate and Vinblastine combination to try and shrink these tumours, and as my oncologist explained "to help give me relief to enjoy each day".
I didn't go into chemo with the expectation that one day I will be cured and tumour free, I know that isn't my reality and I don't want to have unrealistic expectations. But I just want my tumours to shrink enough so I can FINALLY be pain free and enjoy what is left of my short life. I have so much I want to still do (read about my happy list here) and I hope to be well enough one day to travel.
My experience so far:
This concludes my first month of chemo experiences ranging from my portacath surgery to starting two different chemo regimes and as my husband said to me recently, "I know it is horrible right now, but the sad thing is you will get used to feeling like shit... just imagine when chemo is all over and you will look back and think 'It is good not to feel that crappy'. If anyone can do this, you can".
I love that he has so much faith in my strength, although I constantly wonder and feel like I am not strong enough to do this.... my husband is like my own personal cheerleader! I don't think I could have done this without his support...
One month down, just 11 more to go!
Tuesday, November 10 2015
One thing that I am learning more and more each day as I progress through my chemo regime is just how much fatigue I have and how little energy. I am realising the need and importance for energy conservation and working on improving this for myself and hoping to share a blog post to help others too, afterall being chronically sick is exhausting.
Another thing that is exhausting is dealing with the emotional side of living daily with a chronic and terminal illness.
I realised yesterday, that in order to help conserve my energy and to prevent just how exhausted I am feeling today, that I should try and keep my mental breakdowns and panic attacks to a mininum or at least save it for the times that need it most, or best yet to wait until you have all the facts and a confirmation from your primary care physicians before freaking out.
This is what happened yesterday and the lead up to it.
Monday 09.11.15 1PM AEST:
I left there trying to hold it together as I was hoping it was a fluid cavity as that could be fixed with a surgery and drain, but a new tumour I couldn't handle.
Monday 09.11.15 3PM:
I felt like the biggest dickhead ever and felt horrible for causing my family further heartache, but my heart was broken as I was told the wrong misinformed information and I hadn't yet seen my primary doctors to have it all confirmed.
To my followers that were supporting me yesterday during my freakout, I am so appreciative of your help and sorry for an undue stresses caused for worrying about me... It was not a cry for attention I legit thought I was on the brink of dying (so scary).
Much love to you all x
Tell me in the comments below, a time where you freaked out before knowing all the facts
Friday, October 16 2015
Earlier this month on the 2nd of October, I travelled the three hours south of Coffs Harbour to Port Macquarie where I had an operation to put in my portacath (port for short) for ease of use/access during chemo.
I just realised how funny that I had to go to Port to get a port (HAHA).
I spoke with a couple of friends who I met through Canteen that have gone through treatment and I asked them how they got their chemo. One said she first had it via a drip in her arm then got a port put in and loved it, and my other friend had a Hickman line.
I had met with the vascular surgeon and he showed me the port I was getting, which was this awesome metallic purple Power Port and given purple is my favourite colour I thought that it was the coolest thing ever, although my doctor thought I was weird given that you won't see it as it is under your skin... but knowing it is there and that it is purple is all that matters!
On the day of the surgery:
The night after surgery:
How is the port accessed?
It turned out the needle was defective, so they tried a new needle and it worked using the head turned far to the left and coughing tricks.
I have since had my port accessed multiple times during chemo, but also for fluids when I have presented to the Emergency Department with dehydration and fevers.
For more information on ports and if it is best suited to you or your chemo regime speak with your oncologist or your chemo nurse who can provide you with booklets and information.
Saturday, September 26 2015
NB: This post contains raw emotions
I am sitting here writing this approximately 3 days out of having my first round of chemo, and if I said I wasn't shitting myself, I would be lying and quite possibly with my pants alight.
You see, even though I have known for a while now (little over 3 weeks) that I would be needing chemo I thought that I was okay with it and had accepted it, and that I was ready, but the more meetings I have with my oncologists and chemo nurses and waiting for vascular surgeon to put in my portacath and the more involved this process gets, the more overwhelmed I get.
It all started earlier this month, I went to Sydney and met with my oncologist to review my beastly desmoid tumours, and it was concluded that it was time to try chemotherapy to shrink these tumours after all other options had been exhausted.
My oncologist told me I would be needing to have a drug called Caelyx, which is predominately used to treat breast cancers but has had some clinical trials where it has been effective in the fight against desmoid tumours.
So I left the Sydney appointment with the relief of knowing that I can have chemo back home and would need to organise a local oncologist, which I first met with on the 17th of September. In this meeting I was blown away with how thorough he was and he knew EVERYTHING about my history and I was really impressed with how much research he had done into my rare tumours and disease.
It turns out that the chemo that I NEED to save my life comes at a price. You see, the drug currently isn't on the PBS (Pharmaceutical Benefits Scheme) and is $6,000 AUD per dose of chemo, meaning I would be needing to come up with $36k, which I don't have.
So I called my Private Health Insurer, who told me that "we only cover chemotheraphy if done as an inpatient and if it is on the PBS, unfortunately we can't cover your chemo". I was so upset and started considering what my options were.
My oncologist presented three options to me, these were:
By this point it was a Thursday and I was told that I had until Monday to make my decision.
After talking at length with my husband and family, and writing a pro's and con's list I decided that we will go with option 3.
I got a phone call on Tuesday morning from my oncologist to say that the drug company has responded and approved 3 initial treatments and pre-approved a further 3 more, so 6 treatments in total!
I was so relieved I was crying and calling my husband and family to tell them the great news, I felt like I had won the lottery! Honestly!
Because of how rare my disease and tumours are, if this drug works for me then it might help other people with the same disease and options, and might provide some hope to those who feel all has been lost.
While I am so appreciative for the chemo being supplied, I am trying not to get my hopes up ..... if it doesn't work I really don't know how I could cope if I felt that all hope is lost, as it stands I am petrified of my future and what my life will entail for the next 12 months, and I am just praying that this works.
My husband and I have attended chemo education sessions, so we know what to expect and what is involved, just being only a few days out of starting chemo I am shitting myself, and finding myself feeling rather anxious, angry and scared.
... If I click my heals together 3 times and imagine a secluded beach in paradise, with Ryan Gosling serving me cocktails while topless, will I be transported there?
...CLICK.... ......CLICK....... ......CLICK......
Maybe it only works if you're wearing glittery red heels?
P.S I need your help! While my chemo is being generously supplied, I am struggling financially with all of the other medical costs (scans, medications, specialist consults) as well as getting to and from chemo and trying to manage life in general, things are a bit tight..
Sunday, August 30 2015
There is something about being chronically sick and told you're essentially "a ticking time bomb" that really helps to put things into perspective.
When I was first diagnosed with FAP in 2010 (I was 19), I was told that I wouldn't be at risk of bowel cancer until I was 30. It made me realise just how much I wanted to do and achieve while I still could.
Then in late 2012, I found out the polyps in my bowel were turning cancerous and that I only had a matter of months to act and have all of my bowel removed. You would think that this would cause more of an alarm and prompt me to want to do a lot more with my life, but as the bowel cancer risk was removed, I naively thought that my risk of cancer would be removed and I could get on with my life..
But boy was I wrong.... My cancer journey didn't end there. In fact, I was diagnosed with thyroid cancer earlier this year too which thankfully was successfully removed in April while it was still in the stage I phase, remained contained within my thyroid meaning it hadn't reached nearby neck tissues.
It wasn't until a year ago that I had this drive and motivation to want to do everything I have ever only imagined in day dreams, was re-ignited and has been a continual driving force (and distraction this past year). It made me realise that while I was content with my life and my accomplishments so far, that I didn't feel entirely happy, and I knew that there was more I wanted to do and see.
So I decided I would write a happy list, as opposed to a bucket list for one of two reasons:
What was the changing point for me, was when I was in hospital for pancreatitis when the doctors did a CT scan that revealed there was this new and rather large tumour and suspected it was a desmoid tumour. These types of tumours are really rare, but they can also be rather deadly and life threatening and these 'aggressive fibromatosis' can cause death.
To put it bluntly, when I was first diagnosed with FAP my doctors said that they "hope that you don't develop desmoid tumours... if it isn't the cancer from the FAP that kills you the desmoid tumours will".
So while I am only 24, I have come to terms with the fact that this condition will kill me, I just don't know when. Some doctors mentioned up to a year if the tumours continue to grow at the rate they currently are (thankfully last lost of treatment is keeping them at bay and no new growth) but others have said 5-6 years.
#2. Sense of accomplishment and fulfilment (purpose/direction)
#3. Is more empowering and motivating
#4. Offers inclusion of others
#5. Works as a distraction
Things on my happy list include (in no particular order):
I know some of these may sound over the top, and I admit they are but if you're going to dream you might as well dream big as well as being realistic... now if I could just find the next multimillion dollar idea, I will be well on my way to taking over the world (not quite literal).
So tell me, do you have a happy list and what is one thing you want to mark off your list? Feel free to comment below.
Monday, August 24 2015
I recently had a brain MRI as I was experiencing recurring symptoms I had when I was first diagnosed was arachnoid cysts on my brain in 2009, so as the symptoms had returned (the headaches, hearing loss and vision issues) I thought it was best to have a repeat MRI. The scan confirmed that the cysts that had been fenstrated (drained) back in 2009 had returned and were as big as they were then, and after consulting with my brain surgeon we agreed to monitor it for 6 months as this is the least of my conerns right now health wise.
So I had a reader message me after my scan, sharing that she too was going to have an MRI but she was feeling a bit concerned as she didn't know what to expect as she hadn't had one before, so she asked if I could share my experience and any tips to help her prepare.
What to expect when you need an MRI scan
What is an MRI machine?
How does the proceedure work?
How much does a scan cost?
Can anyone have an MRI?
How to prepare for an MRI in 10 steps:
ONE thing I like to do after my scan, is to go for a nice lunch or coffee with a friend. Not only does it help ease the anxiety I feel while waiting for my results to come back (can be a couple of days) it also is nice after having had starved all day prior to the scan.
These tips are based on my own experience of having multiple scans, and I am sharing to help you in the lead up to your own scan. The scan isn't invasive and no need to be scared of the scan. But it is perfectly normal to be anxious about the results, I know I usually am (especially when waiting to review my tumours).
As always, if you're needing to ask a question you can always connect with me through email or via facebook. Please remember I am no Doctor, so it is always best to consult with your physician as your first point of contact. I am only sharing my experiences on this topic.
You may also like the following topics:
p.s If you find my tips and blog helpful, please take a moment to vote for my blog in the Heritage savvy bloggers competition. With your help I (and if I win) I am starting a new support website (and app) to help other young people who live daily with a chronic illness. By taking a moment to vote not only will you be helping me to help others but I am confident that this website will change the lives of many (and if you're in Australia you could win $100). Please remember to confirm your vote via clicking the email they send (check your junk/spam too).
Saturday, June 13 2015
There are some things in life that people shouldn't have to endure, but thankfully there are organisations out there to lend a much needed helping hand when you need it.
When I received my Cancer diagnosis earlier this year, Redkite were there for me and without their support I am certain my journey would have been completely different.
Redkite were there for me when I was alone in hospital for over a month in Sydney, 800km south of home.
Before I was referred to Redkite by the hospital social worker, I had seen Redkite on tv but never actually knew what it was that they did or how they helped others. Little did I realise that they were an amazing organisation helping young people aged 0-24 with Cancer and their families.
Here are 5 ways RedKite helped to make a difference:
#1 Red Duffle bag filled with goodies called a support pack
When my youth support worker from the RPA Youth Team came in carrying this huge Redkite duffle overnight bag, I thought it was the coolest gift. Inside the bag was some amazing essentials that made the biggest difference to my hospital stay, and also since coming home.
I take the blanket with me everywhere I go and snuggle up with it everyday, it is so soft and warm. I also use the bag heaps as well, often accompanies me to hospital.
#2 Financial assistance in the form of Coles or petrol gift cards
#3 Education scholarships
These education grants can be a huge help if you're studying and help you to achieve your goals or ambitions. For more information click here.
#4 Dare to dream scholarships
#5 counselling and help
Redkite can be contacted via 1800 REDKITE (1800 733 548), Monday to Friday, 9am – 7pm AEST or firstname.lastname@example.org.
Did you also know that they offer help and support to help you return to studies or the workforce? They can offer an individualised plan for 15-24 years who've had cancer and are wanting to return to studies or work. They work with you through setting a range of goals and a realistic plan to help you achieve them.
I would like to say a huge thank you to Redkite and for everyone reading this who donates and supports them. Their work that they do to help support young people like me who have had cancer is so important and has made the world of difference to my life. I will always be grateful for the support and help.
Disclaimer: I wanted to write about my experiences with Redkite not because I was asked to or felt obliged to, but because I don't know how I could have gotten through this year without their support and help. I am sharing my experiences as they have made the world of difference to my cancer journey and I know first hand how important their work is. Please donate and support them so that they can continue helping young kids with cancer and their families.