Saturday, October 27 2018
This is not a paid advert or collaboration, just me finding a great deal to pass on.
I have tried all year since reading the Barefoot Investor to find savings where I could through reviewing our bills and that with other providers and even had power panels installed through an interest free payment offer.
One of the bills that has been bugging me, is my pet insurance for Dusty, I know many think it is a waste of money to insure your pet but it is something that could help save big costs. With Dusty's breed of cat, we were recommended by a vet nurse to get insurance and go through Pet Plan.
We signed up a policy when he came to live with us going on 2 years ago to this date and at the time the plan was great and affordable at $36 roughtly a month. But once the 12 months were up the policy jumped up, and then up again and now is sitting around the $63 a month, almost doubling and I am no longer feeling confident with our policy. We haven't needed to use it yet but it was a large cost that had doubled for almost no reason.
So I was on Kogan the other night looking for a gift for Russ for Xmas, when I saw an advert for pet insurance and was curious. I was intrigued by the first month free, but also that the plans looked similar to what I was paying currently with Petplan but at a much lower rate.
I signed up and emailed to cancel my petplan and pray that Dusty doesn't get sick and needs a vet, but at least if he does we have cover.
Best of all, it is now only $39 roughly a month instead of $63 and to our budget and pocket that is a big saving!
I am interested in learning more about their mobile and internet plans, 2 years until our contracts are up but never too early to research options.
That is our power reduced, our pet insurance, our car insurance and our home and contents insurances this year, I think I have done well to make a little savings in each policy.
I always feel productive when I have done some adulting, Russ is even happier if it comes in under budget. Or when Xmas comes early...
Oh and as for Russell's Xmas present (the whole reason I was on Kogan to begin with), I ended up finding it on a different site for $30 cheaper, it arrived on his day off and he opened it and started setting up before I had realised, so now he has his Xmas gift and he loved it. It was a pokemon go lego like (mega construx) and was a big gyuarados (the evolved form of Magicarp) so Russ has been happy. Found it on ToyDeals.com.au for $30 plus post, but still was cheaper than most sites, quick to arrive too (couple of days too). also not a paid mention, just a damn good find!
Crazy that Christmas is so close, it also means that the Share the dignity #itsinthebag promotion is on soon too, better get started on that myself. I am not anywhere near organised this year!
Disclaimer: I was not paid or asked to write about this, I found and paid for this plan myself and thought it was a great buy to pass on to you, always read the PDS to make sure the product is right for you.
Thursday, October 04 2018
Trigger warning: Talks of mental health, vulnerability
You: How are you?
You: Ok. What's up for today?
- - - - - - - - - - - - - - - - - - -
I'm sure you would agree that this is, the normal greeting and conversation you would have with most people throughout your day. What purpose does it serve when it is offered by rote, and from both parties?
There are times when the question might be just a little different and if you stop to think about your response you can create change. Observe.
Y: How are you?
Y: Hmm... Do you want to talk?
- - - - - - - - - - - - - - - - - - -
Hi everyone this is Russell, the Ostomistic Husband.
Recently, I had a bit of a breakdown at work. I got there to work okay, but then things just got just a bit too much for me. Luckily, we were made aware that there is easy access to a counselling service available to staff, through our EAP, so I had to sort of bite down on my pride and ask for help.... finally!
This was hard, but the hardest part of the day came next.
Next, was the call to the counselling service which led to even more of a breakdown, so obviously there was more to it than just a momentary lapse in willpower. Just talking to them about why I was feeling so teary led to finding I was truly angry on the inside, and I realised it was about time that I started opening up for real and sharing these feelings with someone before they became more harmful…. If not only to myself but to others too, and its the least I want.
The tears were because I was really worried about Talya’s declining health; your best friend dying before your eyes, is enough to jerk a tear from even the most hardened macho jerk. I'd gotten to a point where I had to really start opening myself up to someone and letting them in.
That hurt me because Talya is the most supportive and talkative person I know, yet, I was not letting her in. I know she only wants to get inside my mind further and help me work through this, but I think that I can’t talk to her about how I feel because that would not be me being strong for her. I also know that Talya doesn’t tell me how much pain she’s in all the time because that’s her being strong for me.
I am so tired of us pushing against each other when we really should be pulling each other closer, so we can rely on each other‘s strength to be able to help us in our time of perceived weakness. The time is now.
The anger itself, was mostly a due to the fact that I can't control everything. I was finding that the more stressed I was getting the more time I'd have to take off work. Missing out on income didn’t help things, we would have to tighten the purse-strings at home for the following weeks as only small paychecks came in. That made things even more stressful so on spiralled everything down towards chaos and I thought, "Enough is enough! I have to man up. I have to deal with what’s going on inside, uncomfortable as it is I must move forward".
I have autism, so it’s hard for me to talk about feelings that I don't fully understand. But, I have to find a way of communicating my internal workings to someone so that they might be able to give me some additional tools to better deal with those feelings. I don’t generally feel emotions all the time, and when I do get them they are usually overwhelming and too powerful and it scares me.
Unlike most people, I didn't get to learn how to deal with those feelings, in their varying degrees, when I was younger. So when I get some hot emotion it’s just like a huge slap in the face and I don’t know what to do. Actually I do know what to do; I do what most people in my position do, and that is retreat.
So usually I retreat inside myself rather than looking for outside help. I think it best to stop talking, I just want to be alone, I just want to suppress those feelings and hope that in time they go away. I need to learn to recognise there are times that I can self heal and there are times that I require external forces to help me to heal.
What I'd been doing up to now was no longer working, so I had to make a change, it was only inevitable. I think that having this counselling service available to me is a lifeline that has been there for me for years, had I just opened my eyes and pride to the service. I know it is going to be a huge benefit to me. I may have the secrets of the universe poured into my open and receptive mind or I may only learn relaxation techniques to help deal with my grief, not just loss but the anticipatory grief too.
Either way I will be in a better place than before simply because I answered a question posed to me in simple conversation honestly, not automatically.
So basically my message here is if you need help ask for it. If you can’t ask the people that are closest to you then for the sake of your sanity and health ask somebody else.
Just do yourself a favour and talk to someone, even if you do all the talking and you realise what you need to do without them saying a word. The fact that they’re there means you are not alone and that you’ve opened up to them means you are able to start healing.
I just want all the blokes out there who are carers to someone who is chronically or terminally unwell, that I see you, that I am you and that you are not alone in this brother. We are the forgotten brotherhood in this story but if anything we should rely on each other.
Let’s remove the stigma that it isn’t the blokey thing to speak up about our feelings, but we shouldn’t feel ashamed for when we do cry, it is better than bottling it all in and an avalanche of problems emerging.
Fellas, we need to be the best parts of ourselves so we can be the champions our women need us to be so lets make a pact that we will not go through this alone anymore. Yes, it isn’t us who are sick but we are the ones who are here holding their hand when they are crying, comforting them in their times of need, but we keep neglecting that this is all taking a toll on us too.
The pain at the thought of losing my beautiful wife is all to hard and real but I know I am not the only partner or husband out there who is feeling this anger and loss.
How about I start up a group called "The Ostomistic Husband brotherhood", where it is a fb group you’re welcome to join and share in the times you are struggling and need a little clarity or just need someone who gets it to know you aren’t alone, I won't be available to offer advice or act as a counsellor but should you need somehwere to ask for questions or need a safe space to open up, this will be it.
If you would find this group valuable comment yes under this blog. It is a safe space, men or partners or carers of someone ill or terminal.
I know there isn’t much support for the men and the carers but lets be in that change tonight.
It is only one day at a time that is given, but lets use that day to try and be the change we wish to see in the world.
Please don’t forget you’re not alone, I am you, I see you, I feel you.
About the Author:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au.
Monday, August 20 2018
I think this title is appropriate as we were served chicken for dinner at the awards night, sorry just being cheeky.
On Friday the 17th of August, Russ and I drove up to Brisbane to attend the 2017 Great Comeback awards held by Convatec. I know we are in 2018, but it was 2017 when I applied and so the award is for last year but it is in this year which is confusing, but anyway, I won!
I was 1 out of 5 finalists from Australia and New Zealand.
It was such an honour to have been made a finalist, and I was incredibly shocked and surprised to have found out on the night that it was me who had actually won! There were so many deserving and inspiring finalists who have incredibly powerful stories to tell.
On the night at the awards ceremony, which was held in the brand spanking NEW boutique hotel called Emporium Hotel South Bank (I am dedicating a whole separate blog post to this, so stay tuned), there were video interviews of each of the 5 finalists presented. Each video is around 2 minutes long and consisted of images or videos being added in to share in the impact of the story.
I was in tears watching the videos, then mine, which was last to be presented, had me in a complete blubbering mess. I was so embarrassed as it was MY story and I know this sooooo well so it surprised me that it impacted me the way it did. I assume it was a build up of emotions felt on the night, I was incredibly anxious but I was also very overwhelmed, so once the tears started I couldn't stop.
Please keep in mind that the original video was 22 minutes long and was chopped down to 2 minutes for the ease of viewing, so a lot of important points I made were missed. I did also thank my friends and family and also those who read my blog and my tribe who encourage me (you guys), so I don't want anyone to be upset if they didn't hear it mentioned (because it was).
If you have an ostomy, or know someone with an ostomy who has a story to share and have done something inspiring or had a comeback post ostomy life, please let them know about the awards. It could be something like pre ostomy life you were too sick to travel so once you had an ostomy you travelled, could be you returned to work, you did something you have always wanted to do, you started a movement to inspire others, you went back to uni and graduated, or you found yourself and the joy of life from having an ostomy.... or it could be whatever your heart desired that you feel you made a great comeback thanks to your ostomy....
The Great Comeback is entirely your own comeback after ostomy life and could be anything, or could be a number of things, it is different for each person.
To apply you need to submit your story via the site, you do need to include certain aspects of your story pertaining to:
I wrote my story out first in a word document and then copied/pasted it in the appropriate sections. I used the aforementioned topics as headings for each part of my story.
**Please note: the drop down box doesn't have NSW available to be selected, they are aware but have said to choose any state but write somewhere that you are from NSW. They are in the process of fixing this error up along with updating their site too.
If you have a stoma nurse who is amazing and deserves to be recognised, please nominate them too!
I do encourage everyone to apply, the program is a great way to not only share your story but to meet other members of the ostomy community. The awards are all about empowering and inspiring ostomates that there is still a life to be lived and enjoyed after surgery. I had a lovely night, which I will share in more detail in a blog post to come.
Thank you to Convatec and the judges for choosing me as the 2017 winner and I can't wait to see what is to come.
Tuesday, August 07 2018
Tomorrow is Dying to know Day, which is an initiative to encourage people to openly talk about their end of life wishes but to also become better educated and informed about the decisions to be made.
There are 556 events happening all around the country (Aus), to see if there is an event near you click here.
I recently discovered that there are death doulas/death midwives, who help to assist people with their end of life decisions. I am hoping to collaborate on some posts soon with one and share more information about the services but also about being better informed, such as planning your funeral could save you thousands if done in advance, and I am interested in learning about that! So stay tuned for that collab.
75% of the population have not had end of life discussions or discussed their needs, even for something as important as organ and tissue donation. If you have chosen it on your drivers license you still need to register via the donate life site, it takes less than a minute to sign up and you could save many lives.
I know that many find the topic of talking about death confronting or it is rather taboo, but I know for me I want my wishes heard and understood so that when the time comes I hope others know in advance what I want, such as to be at my own home not hospital, and that I hope by having my funeral planned it can save my family the stress of it as they grieve. It also gives me peace of mind that I am getting what I wanted, which I know I won't be there but I still want to know my needs are voiced.
Take this time today, even if you aren't sick and facing your mortality early, to have a conversation with your loved ones, to consider checking your will is up to date and your power of attorney are valid, also checking that your advanced care directive is fulfilled. Tell your family if you want to be an organ/tissue donor and tell them what sort of life celebration you want to be had in your honour.
Also take this time today to become more aware of your options and choices available.
If you're wanting to know a place to start in terms of death literacy and being death aware, this is a link to a list of resources available via dying to know day called "the big list".
For an interview with a death doula on why they believe everyone should have a death plan, you can read more here.
But do spend tomorrow writing a list of your own ideas or needs, and take the time to talk with your loved ones too.
There are plenty of events happening around the country, quite a few in regional NSW too, closest is Port Macquarie for me, but I don't imagine I could get there tomorrow. But palliative care are coming for their usual visit so I plan on making sure my documents are up to date.
However you spend your Dying to Know day, I hope it is a good day!
Sunday, June 17 2018
Calling all young females (u/55) living on the Mid North Coast or Coffs Coast with a stoma, check out this exciting and new FREE event happening in August!
My stoma nurse has been excitedly organising this event and I was honoured to have been asked to design the flyer, but I was even more honoured to be asked to speak on the night as one of the speakers.
☞ The event is FREE and is open to all women with a stoma and under 55 from the area, if you're willing to travel you can come along, just make sure you RSVP.
☞ If you have any dietry requirements aside from the stoma, let the stoma nurses know and call 0266567804, that way everyone is catered to.
☞ The night is going to be a fun night with the chance to get to meet other young ostomates under 55's and the hopes of connecting each other to form friendships as ostomy life can be rather lonely for some.
☞ There will be a fun activity for all to join in and will also have reps from different ostomy companies there with samples or to speak more. Guest speakers will include Allied health professionals as well as myself.
☞ This event wouldn't be at all possible without the fundraising done by the Coffs Coast Crafty Crew (scrapbookers) in April 2016, as well as the hard work from the organising team of stoma nurses.
I am really looking forward to the night, and looking forward to meeting others from the area. Whether you're from Port, Grafton or in between this event is open to anyone who would like to come, has a stoma and is under 55 and a female.
Did I mention it is FREE and catered?
Can't wait and I will see you there!
Friday, June 15 2018
Today has been a massive day, I have been running around from appointment to appointment between the cancer centre getting my port flushed and bloods checked to getting my long overdue hearing check done. As part of my promise to spend time this year doing things for self care and prioritising me, this appointment was on the list.
I felt rather relieved to have finally had the appointment, moreso for what came next.....
I knew I had hearing loss in my left ear and knew it for a while, part of putting off the appointment to getting them was out of fear for the cost. Ever since I was 18 (2009) when I had the cysts on my brain I noticed hearing loss then, something to do with the pressure in my head, which has only gotten worse over time. Then when I had chemo I noticed with most things about my health, that it deteriorated more, so I feel for my neighbours as the TV is always so loud but I also feel for those I have hurt because they felt I ignored them or the conversation or that I was rude because I sat in silence.
But today I went and had my test and found out that I was eligible for free government subsidised hearing aids that I needed to pay $45 a year for batteries and servicing.
So today I got fitted and chose the colour and style, then in a fortnight I will get them as they have to be ordered - they will be fitted and I will be shown how to do it myself and then I have them for a fortnight to test run and make sure they will do what I need them to do.
If after a fortnight I am happy with them I accept them and they are mine.
It was a little overwhelming being told that I am eligible for hearing aids, not from a vanity perspective or worried for my looks, but because I can finally hear again and not miss out on conversations or pretend I understand and can follow along.
It gets so exhausting if I go to a family function or a social outing, even just a dinner date with Russ, if there is too much noise I can't hear and it gets tiring trying to focus as well as focus on not being in pain, and I tend to just sit there not saying much and can be labelled as rude, but it is just so so hard.
So I almost cried when I learned that I could be hearing in a matter of a fortnight.
I am hopeful and excited, I have needed this for so long.
I am not upset or worried, I am just grateful for our health system and that there is subsidised hearing aids that don't do fancy things but do just what I need and that is okay, would have loved to have gotten purple but Russ found a colour that would blend in with my ear and hair so won't stand out too much.
So I am okay, I am just grateful for all the new possibilities coming my way.
I learned years ago to never take hearing for granted and have been grateful I still had hearing but was just hard to hear in one ear.
So if ever you felt I was ignoring you or being rude, I most likely just couldn't hear you.
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.
Wednesday, April 18 2018
Stoma Nurses are the heroes of the ostomy community, well I know I wouldn't have made the last 5 years without my wonderful nurse by my side. So it was why it was an absolute honour for me to have been asked by the WOCN society to contribute to a tribute video they were collating for WOCN week, to say thanks for our nurses.
It was even more of an honour as it was to mark 50 years of WOCN contribution, and I felt in someway that it was a way for me to leave a mark in the world to say thanks to my Nurse and all the nurses out there. I am big on saying thanks and ensuring that I say thanks for those I love or those who have made an impact on my life.
This week 15th-21st April, is the WOCN appreciation week. WOCN stands for Wound Ostomy Continence Nursing, in Australia this is a Stoma Nurse who is also a Stoma and Continence Nurse.
If you wanted to see the tribute video, here it is. If it doesn't load below the link is here.
Thank you to all of the nurses for all that they do to help ostomates navigate life with an ostomy more smoothly. Most importantly, thank you for having our backs.
Congratulations to the WOCN society on celebrating 50 years of service! And thank you for everything!
Monday, February 12 2018
Please Note: All views in this blog are my own (and I don't claim to speak for or on behalf of anyone other than myself)... also, spoiler alert if you haven't yet watched episode 14 of the Good Doctor. I am just sharing my dismay at how something that saved my life was shown so negatively inflicting a stigma that so many fight to erase.
I have finally got around to catching up on the most recent episode of The Good Doctor, which I was rather enjoying up until this week.
Let me start by sharing (an ironic) quote from the episode:
The irony is that they could have shown more compassion surrounding how they approached the idea and livelihood with an ostomy.
Just an idea?
Myself and so many in the community work tirelessly to try and help people understand a life isn’t over with an Ostomy and comments on tonight’s show sets our work back 10 steps... arrogance isn’t helping anyone.
Here are what other ostomates and advocates said about the episode too:
No You Cantcer @NoYouCantcer
Here are some ostomates who inspire me and others:
But then there are other ostomates who have regained their lives and done things they never would have imagined, because of their ostomy and because they had the surgery, that in their cases were life-changing as much as it were life-saving.
I will introduce you to Zoey Wright, Laura Zapulla aka @stoma_licious, Sam Abarca aka @Aussie_Ostomate, Gaylyn Henderson aka @Gutlessandglamorous, Blake Beckford and Dana Marie. You may have heard of these guys before or seen them on instagram, you may remember Laura and Sam from my 20 Aussie Ostomates on Instagram post.
While these are just 6 ostomates, there are so many others out there showing life with an ostomy can still be lived and loved, but also that this can be a second chance many didn't have.
I am sharing these 6 ostomates because they have inspired me and I know they will inspire you too!
✰Introducing Zoey Wright @zoeywrightx - Pro Fitness Model:
✰Introducing Laura Zapulla @stomalicious - Ostomy travel blogger:
✰Introducing Sam Abarca @aussie_ostomate - RN with an ostomy and training to be a STN too:
✰Introducing Gaylyn Henderson founder of @gutlessandglamorous - helping to inspire the beauty in all of us:
"Anything that has the power to save a life can be nothing but beautiful!"
For over a decade Gaylyn adapted her life around her pain, her health issues caused from her IBD and struggling to find normalcy. It affected her emotional health too. It was then when she had her total colectomy and became an ostomate that she regained her love of life again. She often has spoken out about the stigma attached to having an ostomy that was the reason she held off for so long. Determined to change this for others, she founded the Gutless and Glamorous foundation with aims at helping to inspire and improve the lives of people with chronic illness and pays special attention to those with an ostomy or need to undergo life altering surgeries. She said (in an interview with BlackDoctor) her ostomy "saved my life and I want to highlight that those living with one can be both #GutlessandGlamorous. It is my goal to help erase the stigma." I think she has done an incredible job and believe she deserves a huge applause for all her tireless work from advocacy, support, education and fundraising for a cure. The world is a better place because of people like Gaylyn. Find her on: Instagram Facebook Twitter Blog
✰Introducing Blake Beckford @Blake_Beckford - Model, Body Builder and advocate:
✰Introducing Dana Marie Arnold @lovedanamarie - country music singer/songwriter, recently married:
I have talked before about how my ostomy gave me my life back and how it saved my life, my ostomy is the reason I get to cherish the gift of each day I wake up, my ostomy isn't perfect and is complicated but it gives me life and that is precious. In the future I hope that there is more acceptance for life-altering and life-saving surgeries like an ostomy and that it is more accepted.
This is why I started my blog 5 years ago, so that I can share life with an ostomy and hope to inspire others to live their best lives. I am so grateful now that there are so many wonderful ostomy advocates and bloggers on social media.
My wish is that in 10 years there won't be a stigma for ostomy life, that ostomy life will be accepted and not made to feel embarrassed for pooping different... I have seen how much the landscape has changed in 5 years and it gives me hope for future ostomates and the next generation of ostomates that they will feel love and acceptance and never have to feel ashamed for something out of their control anyway.
As I say all the time, I'd rather an ostomy in tow than a tag on my toe, ostomy life has been a rollercoaster ride for me, but it has also gifted me the joy of living too - so I will always be grateful for that.
Friday, February 09 2018
I have had the pleasure of connecting with some incredible ostomates over the years, even had the chance to interview and chat with them for my magazine, which is always a great privilege. Some have even become great friends too.
Last year I was honoured when Krystal Miller, who is an Aussie ostomate/advocate/IBD warrior and blogger more famously and belovedly known as Bag Lady Mama online, allowed me to interview her for my magazine. She was the cover ostomate for issue 2 and allowed me to get down and deep with my readers, and had a no filter no question off limits type interview.
Ostomyconnection.com reached out after the issue went live and asked us if we wouldn't mind if the interview was republished and edited to suit the readership and the site.
So last month I opened up my inbox to see the latest interview went live on their site. I was so excited to see how many were sharing the article around social media and how many loved the interview.
As a writer, or maybe it is just me, I tend to doubt myself A LOT - I mean constantly - so I always worry that people won't like what I have written or that it wouldn't be read/enjoyed.
I saw within a couple of days there'd been something like 888 shares, this gave me this huge smile and sense of "maybe I am doing something right after all" but to know so many liked it really made me so proud. I think I used the term 'proud as punch' on twitter, but I honestly am.
Of course I know my interview wouldn't have been what it was if it weren't for my wonderful interviewee, Krystal.
If you want to read the interview on OstomyConnection the link is here.
5 years ago I took a chance on myself and started writing about life with an ostomy, and I am just so grateful to the opportunities and people I have met along the way.
P.S I have another interview/article on another Aussie ostomate, Laura Zapulla who blogs at stomalicious, talking about how she has inspired and shown ostomates that you can have bag will travel and that having an ostomy doesn't stop you from living the life you are able to. She recently moved abroad which is a lifelong dream. So I am excited to share that interview soon. Laura has shared articles for me in my magazine about travel with an ostomy too.
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 know I have chirped on and on (and on) about how we are struggling financially and that I am concerned about when I die and if Russ can manage it on his own. I know you're probably sick of hearing me go on about it, but it honestly is so stressful.
It is hard being on one income, I know it is overwhelming for Russ too.
So last week we got a letter from our bank informing me that as of today (the 12th) our mortgage will be going up $500 a month.
This really scares me.
Not only do I not know where I am going to pluck that extra $500 from this month considering we are already halfway through the month, but that I really am so stressed and upset.
Yes, I acknowledge my priviledge in that we have our own mortgage, but even when we were renting things were hard and the rent assistance really made the world of difference when it came to our budget. But it doesn't mean that things instantly became easier when we got out mortgage. I didn't realise how much harder it was to have your own place.
I see how worried Russ is over this and I know he is on the fritz of losing it as it was before this letter, now he is just even more stressed. I feel so guilty, I know it isn't my fault and that I couldn't help getting sick but it is my age old issue with that I should have gotten life insurance earlier or made more of an effort to do extra super contributions when I worked as it would mean I have more than $3000 in super.... which I am still fighting to get out mind you.
That is a fight for another day.
Yesterday I got a copy of Barefoot investor in the mail (thanks to a beautiful friend buying and sending me this copy) and started reading it, I have heard everyone rave about it and how effective it truly is, so it gives me hope for the first time that maybe I can get things under control this year.
It is one of my goals to get things neater for Russ, I don't know how much time I have and I think it will just be a massive peace of mind to know it is under control.
We have our mortgage, debts, car loan plus our other bills. So I try each year to review things to see if there is savings to be found, so I am hopeful that this book will help me even more.
Plus, it is one of my goals to read more too, so this is already tackling my goals for the year.... maybe this year is getting off to a stressful start but it might be turning around? Always hopeful that things will get better, surely they have to?
A friend has put me in touch with a broker and hoping we can find a new bank with a better rate and can consolidate our debt which will mean freeing up a lot of weekly expenditure and might mean we can afford to start saving.
So tell me, have you read the book? Did it help you? What was the biggest take away you had from it?
I will let you know when I have finished reading it and what progress I make.... until then, wish me luck!
We also got Solar Panels on recently, they had a 5 year interest free offer, so we are really hoping that on our next bill we can see a difference, otherwise I am going to be rather upset. Russ assures me we will be better off and that it will improve the value of our home too. Do you have solar panels and do you see a difference? Next bill is March, so will let you know if there were savings to be had.
As always, thank you for listening and wish me luck as I tackle this mammoth task!
What goals are you hoping to tackle this year?
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!
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
☟ ☟ ☟ ☟ ☟ ☟
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
Sometimes we think that society has advanced, but then there are times that remind you that the world around us is a cruel, judgemental place filled with so much hate and anger.
I think it is time that people stopped shaming people with disabilities, especially those with "invisible" disabilities. Unfortunately not all disabilities are visible and we should be open minded and not fast to judge and be cruel.
I saw several posts online today about how a young student had flyers and posters stuck all over her car calling her lazy for parking in a disabled parking space, or that she isn't actually disabled.
This girl is undergoing treatment for cancer including radiation, but these vigilantes shamed her and made her feel guilty about her situation.
As a young female who has cancer, I know how hard it were having chemotherapy and struggling with energy to go to the shops and do mundane things like going to the bathroom.
Due to my tumours, one is the size of a watermelon and is attached to my stomach, small bowel, both kidneys, my ribs, my liver and presses on my back, and also compresses the nerves and blood supply to my stomach, bowel and my legs too.
I have a disabled parking permit because I am unable to walk more than a few metres at the time before needing to sit and rest as the pain is too much and the pressure along with the numb legs isn't pleasant.
So I have a wheelchair and I am not ashamed of it.
My wheelchair has given my life and ability to enjoy and love life back.
But people, even family, recently said that they thought I had a wheelchair because I am lazy.
Yes I am overweight, but that isn't why I need a wheelchair.
I need a wheelchair because I have a watermelon fucking sized tumour slowly killing me through strangulation.
But hey I am just lazy arent I?
I know this issue of disability shaming is happening all too often, just people think they see something they need to be somewhat of a hero and stand up for "what's right", which they feel is belittling someone to feel less than about having a disability because it isn't a perceived acceptable disability.
But not all disabilities are visible.
AND a disability isn't just someone using a wheelchair.
If you look up the term of disability it is: a physical or mental condition that limits a person's movements, senses, or activities. It doesn't say it is limiting to those in a wheelchair.
You don't know what is going on inside another person's body, you don't know the struggles that person is facing, you don't know the shit they have had to put up with that day already due to their disability.
So before you think you HAVE to say something, remember the acronym THINK:
It might feel like your responsibility to call out every person you think is abusing the system, I get it, but while it helps you and your ego to feel better, you are destroying someone else's life just to make yourself feel better. Probably think you're helping to defend people, but you are just making people with an invisible disability to shy back further into their corner feeling shame for not being as able bodied as you.
In your actions just stop and think.... is this necessary? What will it achieve?
But you want to know what my doctor says to me everytime I break down crying in his office over someone disability shaming me?
He says: "Talya, if I didn't think you deserved it I wouldn't have signed off on it.... fuck the haters", so you can see why I love my GP so much as he has my back. A doctor wouldn't just hand out a permit if you didn't deserve it.
Yes, there are people who abuse the system, but it isn't your place to think you are calling someone out.
One incident last year: Russ and I were in the car and parking in the CBD, some lady stopped and argued with us for 20 minutes over if we could park there all because my husband had P plates on his car she wouldn't believe that the permit was ours because we were young. Young people have disabilities too and they come in all shapes and sizes.
Next time you want to shame someone, stop and think first.
If you feel you MUST do something to make yourself feel better, go and donate to charity or do something selfless for someone else. Making others feel good is a much better feeling than making yourself feel good for putting someone down.
There is so much anger and pain in the world already, let's not add to it hey.... be more kind to others.
The world needs more love and they say if we want to create change to start at home first.
Friday, November 03 2017
Recently, I was asked to be the Australian writer and contributor to OstomyConnection.com which is a site dedicated to being a hub on all aspects of ostomy life.
I was asked to write an article on:
Despite there being approximately 44,000 Australians living with an ostomy, it can at times feel frighteningly lonely and friendless, especially if you live in remote or rural areas of Australia (like myself).
When I was 21 (in 2012), I was told that I needed a permanent ileostomy due to early stages of bowel cancer. I didn’t know anyone to help me understand ostomy life, especially my concerns as a young person (moreso, a young female) and navigating/living a fulfilling life. So I sought out a local stoma support group but at the time there was a 40 year age gap with the nearest age to mine, which made me feel more alone and unable to relate to them or their lives.
So .... I turned to the internet - particularly social media - in a desperate search for proof that a life can still be lived with an ostomy. At the time there weren’t many bloggers or people publicly sharing their life with a stoma, so it was hard back then to find “your people” or someone who just got you and could completely empathise with you.
Today, Instagram has a community of over 800 million users!
That is 800 million chances to find your community that you want to connect with or to be inspired by…. After all, a friendship is born at the moment that one person says to the other “What! You too? I thought I was the only one.”
One of the perks of social media is the ability to connect people and to help them feel less alone and isolated.
Whilst I know that there are thousands of Aussie Ostomates on Instagram, here are my top pick of 20 fellow Aussies that I know you’ll not only find relatable and awe-inspiring through the lives they lead, but that you’ll also love. Each contribute vastly to ostomy life.
I look forward to bringing you many more articles.
You can read the post here https://ostomyconnection.com/news-and-culture/20-ostomates-in-australia-to-connect-with-on-instagram
Wednesday, October 04 2017
“Be the change you wish to see in the world”
We all know that at some point our lives will end, but what we do in our life and how we live could be a legacy that we are leaving that would continue to live on well after we have died.
It is hard at times knowing that my end is coming, given my terminal prognosis and that I am living with the knowledge that I could have 6-12months. I do know that a year ago I didn't think I would still be here, but I am. So I am making the most of every single day.
However, leaving a legacy is at the forefront of my mind.
Everyday I wonder: "will I be forgotten?"
I have so many thoughts racing through my mind every minute of the day, these are just some.
One thing that I worry though is if my life meant anything or if I mattered... it might sound like a strange thing to think about or it might sound like a self-centred narcissistic thing, but it is hard somedays wondering "why me?".
So leaving a legacy and living a life that I am truly proud of is something of importance to me
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One thing that I have known and believed since I was a teenager was that I had a purpose in life and that was: "to make a difference or to change one person's life", so I have tried to live life with this desire to help behind every action - including my blog and magazine.
I was pretty excited to have been asked by Share the Dignity to write about legacies and living a life with a purpose. This is a piece I offered up as a volunteer contribution (I was not paid or incentivised in any way), this is a charity I have been passionate about supporting for the last couple of years and one that I know how important/needed their work is.
If you would like to read my article click here. (Feel free to leave a comment if it has helped you or if you liked it)
Share the Dignity have their annual It's in the bag campaign coming up where people are asked to donate a handbag or backpack that is in good condition and fill it with items such as pads, tampons, toiletries and more. To learn more click here...
Being a Volunteer, despite being terminally ill:
Last year I did two backpacks for teenage girls and filled with items I had collected since the Xmas prior. To find out about how I put together 2 bags on a budget, click here.
I decided to sign up as a volunteer and collect the bags and deliver to the respective charities in the area. At one point I had over 300 handbags in my house. Two guest bedrooms were chock-a-block full of handbags and backpacks and there were a trail from the front door leading through the house!
It was an incredible experience and very overwhelming, only that I struggled with energy and pain and couldn't carry much so Russ stepped up for me and helped to deliver everything. Russ also helped me to check each bag for all the essentials and make sure that each bag had pads etc.
I was pretty proud of the work from our community.
Russ and I were delivering bags to a youth refuge and the owner/manager was in tears. One of the girls came out and helped Russ and I carry the bags and she said: " Thank you for doing this, you have no idea how much it means to me to know that strangers do care, that someone believes in me".
Another charity we were delivering to (was our 2nd delivery there that day as the car only fits so many bags) came running out of the charity as she had just received her bag and she hugged me and was crying and said "this were the best gift she had ever received".
I am so happy that an incredible organisation that is Share the Dignity exists, I wish I could have done more to help but I donate pads when I can to their April and August drives and the #itsinthebag. I love that Russ got involved and was a champ in helping me last year, sadly I am not in good enough health to volunteer for a second year but I am trying my best to get a bag together when I can.
I know there were times in my life where pads were a luxury and it meant going without food, it is no exaggeration at all, I am not ashamed of that point in my life I was simply trying my best, but do consider in your next grocery shop to grab a packet of pads/tampons and keep aside for the #itsinthebag campaign, even if you can't afford to do a bag but can donate pads that would be incredibly appreciated and it does make a difference.
If you were interested in volunteering for the it's in the bag campaigns click here, it truly was a hard yet rewarding experience. Or if you can't collect the bags consider offering your workplace as a collection point!
There are always opportunities all around us to help make a difference to someone else's life.
I know that even if you think it is a small act of kindness and that it wouldn't be noticed, it could in fact be a huge thing to that person and be the reason that hope is restored.
Wednesday, October 04 2017
In Early December 2015, I was 2 months into my chemo plan of weekly treatments and was rather unwell with the chemo side of things and was in hospital rather ill with an infected and dying tumour that saw me in hospital for the weeks and months to come.
It was around this time that I learned of the Share the Dignity #itsinthebag campaign, I think I saw it on TV or on Facebook, I tried to organise what I could for a bag. I didn't have much time or energy, so I did the best I could and sent Russ to the shops with a shopping list of things to get for the bag.
I wished I had of known earlier about the campaign and I would have been super organised, so I vowed the next year to start early and shop throughout the year when things were on sale and hoped to try and do at least 2 bags by being organised and nabbing great deals.
So the new year came and true to my word, I started getting organised.
To give and receive a #itsinthebag gift is something that can help improve the lives of a woman who is doing it tough. I have heard stories of how they got a handbag and it helped them to look and feel more confident/professional when going for jobs, I heard from teenagers who escaped a violent home situation and are in the foster care system and a new backpack is a luxury and having someone believe in helping them through school made them feel loved and worthy.... each of the women who receive a bag from you have their own incredible stories, and sometimes they need to be reminded of how incredible they are.
Some tips before you start your bag:
Here is how I managed to organise a bag on a budget!
Best of all I were able to organise not just 1 but 2 bags filled with items following these methods.
#1. Write it all down:
I know it might sound over the top to do things this way, but this is how I have organised present buying for years and it also means I am accountable for my purchases.
You would be surprised how many times I have purchased something more than once because I forgot about it.... even though it has been a year since my chemo finished I still have a rather frazzled brain, so lists and spreadsheets helps me to feel in control of my memory.
#2. Go through your own cupboards:
I found some hair dye boxes left over from when I dyed Russ' hair, some perfume sets I never used, some makeup that were unopened, spare toothbrushes and I also divided the contents of the container of cosmetics I received from BellaBox into two piles.
Having a chunk of things already meant I could save costs and could instead buy something else.
#3. Sales, Sales, Sales:
I start my Xmas shopping usually just after Xmas and take advantage of Boxing Day/Stocktake sales. I did this too when it came to my #itsinthebag planning and by having the best part of a year to shop and know what I was looking for, it helped me to nab some great buys at times.
I also take advantage of Click Frenzy deals, if you haven't heard of click frenzy it is this one day where sites offer crazy sales that are known for crashing the internet, it really is a clicking frenzy. I regularly scope out sites/stores like catch.com.au (formerly catch of the day), ozsale, kmart, reject shops as well as google.
I purchased a Roxy wallet that normally cost $20 for $5, so I grabbed 2. I found the eye masks (Kmart now have a range for $2) at Typo (with the help of a 50% off coupon) for $1.50, the beanie was from cotton on for 50c, as well as the notebooks. The backpacks were half price too. I got quality pretty design umbrellas on sale from Umbrellas & Parosols for around $6.95 on clearance too one was a leopard print.
Catch.com.au have 'club catch' where you receive shipping discounts as well as member only offers, sometimes there is ridiculously cheap priced offers but I find grocery store items like toiletries are really cheap to buy from here and are often a bulk buy too.
#4. Bulk buys and value for your dollar:
Say a pack of Pads were 1/2 price, it means if you purchased 2 packs that it would have cost the same as 1 pack would have, therefore doubling your price. Currently on Catch, they have a 6 pack of mesh bath sponges for $4.98 so 83c each.
Just keep an eye out in catologues or online for good special buys, there really is great value to be found if you shop around and compare.
#5. Afterpay makes bigger cost items more affordable:
I chose to organise my gifts for teenage girls, girls who are doing it tough. I knew a backpack would be great for school use as well as if they worked.
I took advantage of click frenzy sales half price or even less and grabbed 2 backpacks and put them on afterpay, which meant that I could break the repayments up over 8 weeks, which made it a little more affordable as well as not missing out on the sale.
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I really hope that these tips help you when it comes to organising your bag for the #itsinthebag campaign, just over a month before the collection period starts. Don't stress too much about how much or how little you put in, it isn't a competition and as long as you include the essentials such as Pads/Tampons, toiletries and the bag - then you are on your way to giving a woman the greatest gift this Xmas.
Last year my husband and I collected bags in our area and delivered to local charities who distributed them. This was such a rewarding experience and at one point there were over 300 bags sitting in my house!! The emotions felt when seeing each bag that had so lovingly been put together was truly incredible. I wrote about this experience here.
Everyone deserves some magic and kindness at Xmas.
Do you have friends who are doing a bag this year too? Why not arrange a date where they bring their bags and contents and you all sit around together and complete the bags. You could have wine and nibbles too, I am sure it would be a lovely and rewarding experience when shared with your best mates too!
Or if you can't put together a whole bag yourself, ask a friend if they wanted to do a bag with you and you could share the costs of creating it. She might even have a bag for you to use too! It is a perfect experience to share.
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!”
Friday, May 05 2017
NB: This post was also written to be published on abiggerlife.com
This week marks 4 years since I had surgery to remove my large bowel and to live life with a permanent ileostomy due to bowel cancer. I was 22, and until only a couple of months prior I had no idea what an ileostomy was; I naively thought that anyone living with a stoma had a colostomy and didn’t realise that wasn’t the case.
So you can imagine how much I had to learn and understandably was very overwhelmed with information.
One thing I struggled knowing was what exactly it were that I needed to not only see me through my surgery but subsequent time recovering at home and in hospital.
So I thought I would share with you my 10 must-haves on surviving the early days of ostomy life!
I wished I knew these when my life with a stoma began 4 years ago...
#1. A hairdryer:
p.s It is also very helpful at drying your stoma bag after a shower if you aren’t needing to do a change and require it to be dry... we also use ours in winter to quickly warm up our bed before jumping in.
#2. Invest in some supportive garments:
With the help from my Stoma Nurse I was able to order some hernia belts from some of the companies/manufacturers. She helped to measure me and choose the right one to suit my body and stoma.
In summer if you sweat more or if you are unwell with a fever or a case of gastro, you may need to increase your electrolyte replacement drinks to avoid dehydration. Again talk with your healthcare professionals on what works best for your situation.
#4. Metamucil, Marshmallows, Jelly Beans and Peanut Butter:
hot tip: I take a few marshmallows half an hour before a bag change, I find it helps to manage my output a little better while I am doing a bag change.
#5. Gastro stop or loperamide:
#6. Linen and mattress protection:
#7. Stoma supply storage:
#8. Wet wipes or Chux cloths:
#9. Scented garbage bags:
#10. Room spray or freshener:
I don’t want to overwhelm you with too much information (I could be here for days sharing my wealth of knowledge), but these are the 10 best tips I have for managing the early days of being an ostomate.
You will be sore for a while so listen to your body if it needs to heal and rest, as you have been through a massive ordeal, even mentally/emotionally/spiritually. I wished there were sites like a biggerlife.com when I became an ostomate, it really would have helped me to adjust to life as an ostomate knowing there is lived advice to help me on my way.
Tuesday, February 28 2017
"Nothing can dim the light that shines from within"
I have heard this quote time and time again, often stopping to reflect on what it means for me. On days like today, where approximately 350 million people worldwide come together to shed the light on World Rare Diseases Day and helping to raise awareness of the different rare diseases by giving patients a voice to share their lived experiences.
For me, everyday is rare disease day and I am reminded of that several times a day.
But it is important for me that while I try my best to share my story to educate, empower and inspire others on their own journeys, that I know that all of this doesn't define me and I that I am not my disease(s).
I don't live with one rare disease but three, which have all attributed to different health issues mostly chronic, but these have helped to shape me into the person I am today.
One thing being rare has taught me is that I am resillient.
I live a life that is different to that of my peers, it has often felt lonely and isolated, but there have been times where it hasn't been. I know Facebook changed my life for the better, it helped me to find and connect with people online who understood... because of Facebook, I was no longer alone as I navigated my way forward.
However, being in online support groups can be rather destructive at times especially when you are struggling with your illness or your identity or if you are in a very vulnerable place yourself. Sometimes Facebook can be an escape and safe space for people whether it is sharing/venting with people who 'get it' or if you are wanting to share your story or progression of your disease; it can also be too confronting to some who are finding it difficult to come to terms with their own prognosis or are using Facebook as an escape from their reality and it can feel like your disease is everywhere you look.
For me, I have experienced the latter quite often and especially of late.
I log on to Facebook to just catch up on the happenings of family and friends, when I get a notification of someone posting in the group or see a post on my newsfeed; It is a post that someone from the group has died from the disease (that is going to be responsible for killing me too one day) and it got a little too real for me to handle because it wasn't the first post of that day and it wouldn't be the last.
Somedays when there are reminders of my reality when I am already in a vulnerable state is really hard to come to terms with.... I am not in denial that this disease will not kill me as I know it will, but when my resillience is low is when it feels like everywhere I look all I can see is reminders of the disease(s) and death.
It is moments like these where I remove the notifications of the group and hide them from my newsfeed, at least until I am in the mindspace where it isn't taking over my life - especially my online life - as I need to be able to feel safe. This is my way of self-care.
At times it is admitting that I need to feel safe from myself and the thoughts within.
But just because you are in these online groups of your own community, doesn't mean it has to rule over your life. You don't have to be in these groups to know everything to say to everyone, as there isn't always the right thing to say (and it can get exhausting REAL quick). It is okay to be the member who actively listens to people when they need to vent or you can be there to help celebrate their wins by simply liking their status to acknowledge it, knowing that one day it could be you who needs to talk and just have someone who gets it listen without necessarily saying anything.
It is up to you how you find value in support groups, remembering that you'll never truly be alone and that when you need help you have a village to help you can be a huge comfort on your journey with a rare disease.... I know it is for me.
Prior to 2010, I had never heard of FAP or that young people could get bowel cancer afterall my dad was only 39! My doctors had informed me that I was their only patient with FAP and only known case in the area (I later in 2016 learned that there were another family), but in my feelings of isolation and desperation for answers, I came across groups on Facebook where there were other members who either had FAP themselves or had a loved one living with it and joined. The group was all over the world and I spent time learning about others' epxperiences so that I had a better idea of how things would be or what to expect.
Then in 2012 my dad died, later that year I learned that I had early stages of bowel cancer and would need all of my bowel removed. I was told I needed a permanent ileostomy and found myself feeling alone again. I was given material about life with a stoma, but it all related to being over 50 which I as a 21-going-on-22-year-old could relate to.
So I started my blog to try and inspire other young people with a stoma through being ostomistic, a word I stumbled across one day when I tried to say optimistim with a stoma. I began writing blog posts about my journey, tips and tricks I had found, and also using my platform to try and empower others to make better decisions for their health through raising awareness.
I mostly assumed people were reading it as my stats told me so but ocassionally someone would comment or contact me to say thank you for helping them, which helped me to feel that all this was worth it and wasn't wasting my time.
Then one day it lead me to one of my best friends who I later realised I couldn't imagine life without her, probably one of the greatest things to come out of my blog journey.
I later had this idea to create an online magazine for young ostomates as a collaboration between other ostomy bloggers, ostomy businesses or ostomy professionals to help deliver content that is relatable for young ostomates to help them to navigate life with an ostomy. This officially launched earlier this month and has been well received worldwide!
But while my rare diseases have altered the life path that I had envisioned for myself, it sure has given me the empowerment to take back control of my life and to look for the opportunities in each day. I wouldn't have started my blog, an online magazine or aspiring to be a inspirational/motivational speaker.
By not letting my disease define me, I was able to find the real me... and I have learned to love myself and find self-worth which was something I never had before.
I am not my disease(s)
I am rare
I am me
and therefore I am unique!
p.s what is one thing you have learned as a result from your rare disease?
Friday, January 13 2017
It is a little over 2 weeks until the launch of the first of it's kind and a very needed eZine aimed at helping young people with an Ostomy, it is launching on 28th of January.
There is some pretty amazing content that has been generously contributed by Ostomates and proffesionals all around the world with topics that will help a young Ostomate to navigate life with an Ostomy, so I am pretty excited about this and I know I am not alone either.
I have been working with the incredible Vanessa from Becomingness who has contributed some delicious and ostomy friendly recipes (stay tuned for the launch issue to find out more).
But it got me thinking, as there is interest all around the world with the eZine, what if they measure out ingredients in a different manner?
So rather than the hassle of readers needing to convert different measurements and to prevent any confusion, I decided I would design an A6 conversion reference card for different measurements.
You can either download and print at home for FREE via clicking here
I hope you enjoy this quick reference card I designed, and don't forget to sign up for the eZine ahead of the launch to be the first to read it! There will also be some pretty cool prizes up for grabs too!
Monday, September 05 2016
Russell, a.k.a The Ostomistic Husband, has a second blog post or an open letter that he wanted to share with you.
While you might have only said this to us once or twice, and you might not mean anything more than just a compliment, but you are more than likely not the first person that has made that comment to us today. Everyday we are faced with these comments and it is making Russ rather upset as he wonders what do people actually expect of him.
And worst, is that this is how society expects men to behave, that they can't commit and that they won't stick around when shit gets real. Russ is a modern man, and a man true to his word.
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My open letter to those who continually say "you're a good guy for sticking around" or those who continually say to Talya, “Russell is a good bloke for sticking with you through all this…”, I have the following to state:
I’m not sure how often you’ve heard that little gem, but I’d really like to open people’s eyes to how I feel when they say it without obviously thinking it through.
I’ve been with Talya for 7 years now, and she’s progressed through varying stages of unwell since I first met her; I proposed to her in her hospital bed while recovering from brain surgery (with a golden staph infection on her brain) for Christ’s sake.
I know I’m not going anywhere.
The thought that I could leave only occurs to me when you tell me I’m good for not leaving. Talya knows I’m not going anywhere (I tell her often enough), but she starts to wonder when she keeps hearing, “Russ is good for sticking around” which her inner voice relays as, “I’m a massive burden so why should Russ want to stay?”
Why would I want to give up on that just because Talya can’t go for a walk with me? We have access to a wheelchair now so we can still wander through the botanical gardens.
Why would I leave just because she can’t cook or clean? What is this, the 1950’s? Those are basic life skills everyone should learn, man or woman.
Why would I deny myself the true pleasure of simply seeing her smile when I come home from work? That is the highlight of my day. Every day.
We are only as good as our word. I gave her mine, she gave me her heart.
And you’re right, I am a good bloke......
Because I met her!
About the Author:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.
*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.
I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel appreciated too.
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!
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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.
Monday, August 01 2016
Last year I heard about this incredible organisation called Share the dignity, which is a charity that helps to support homeless women and women in need when it comes to 'that time of the month'.
Their slogan is "no woman should have to choose between buying food or buying sanitary items", this really struck home for me.
When we often think of homeless or poverty we imagine people living on the streets, in their cars or in refuge shelters. But this isn't always true. You can have a roof over your head and be poor or poverty stricken.
According to the Australian Council of Social Services (ACOSS) there are 2.5 million Australians living under the poverty line, which for a country deemed 'the lucky country' that seems like an awful lot to me.
When the campaigns from share the dignity were being shared around on social media, there were comments that I observed that went along the lines of "that is an exaggeration surely, you aren't that poor that you can't afford pads or tampons or choose between that or eating"... as I said it was the general gist of the conversations going round.
But I know firsthand how stressful and hard it is when you do get your period and you honestly have to make the decision between buying pads or food... because it happened to me on several occassions.
When I was a teenager I felt embarrassed each month to ask for pads or tampons as I knew they were another expense we couldn't really afford (and I felt guilty asking). So when I got my first job I was rather elated that I could take responsibility for myself and I had money to buy pads and other personal care items I needed. I was independant and I didn't have to ask to buy them as I was in control of my own money.
I took living at home cheaply for granted and it wasn't until I moved out of home that I realised that rent and living expenses are so costly!
The day after graduating year 12 (Nov' 2008) I moved to Brisbane and was living in share housing. My rent was $100 a week and all the utilities were shared. I needed to pay for a train ticket to and from work and leading up to Christmas I had a lot of work and was doing okay... then Christmas came and went and the hours dropped to 8 hours a week which was $80 there about. I wasn't entitled to centrelink as my dad earned too much (even though he wasn't financially supporting me, it didn't matter to them). I was struggling to find another job and I was struggling to pay my rent and had to keep borrowing $20 off of a familly member each week to cover my rent. I didn't have money for food, I didn't have money for the train, I didn't have money for pads. I tried to stay at my boyfriend's house through the week so I could eat... it felt so humiliating!
Then my plans to study at university in QLD fell through, and I was offered a HECS supported place in Coffs Harbour so I moved. Centrelink finally offered me youth allowance which was $290 a fortnight. The house I was renting was $145 a week so my centrelink was consumed by my rent. I had to resort to borrowing $20 each week (off of family) so that I could buy food and pay for the bus to uni (I couldn't afford petrol). I tried so hard to find a job but I kept getting knocked back. I was a struggling uni student.
But there were times where I had to choose between food or pads, and it was a difficult decision. I have endometriosis so my periods were always rather heavy and it meant that I needed more than 1 packet of heavy pads each month, and I am allergic to pads but found the Libra overnight pads to irritate me the least (but they were costly)... but for that week that I had my period I was literally living off of those cups of noodles that you add hot water to and it cooks it... there were nights where my housemates took pity on me and would cook extra food that night so I could eat properly.
Then I moved into a cheaper share house where the rent was only $120 a week so out of my $290 a fortnight payment I now had $50 a fortnight. I felt so rich! I didn't have to call up family desperate for $20 anymore and my housemates cooked everynight and were happy if I gave them money towards groceries and they let me eat with them... also meant I had money for pads each month.
Unless you have been in that situation, you don't know how satisyfing and what a relief it feels to know that you don't have to choose that week between eating or buying pads.
At the end of 2009, my situation changed and I moved in with my then boyfriend (now husband) and his rent was only $180 a week so we went halves and it meant my fortnightly student allowance could go even further.
How you can help to share the dignity.....
So this August I ask you when you're next doing your groceries to buy an extra packet of pads or tampons and drop off to one of the Share the dignity collection points, so that they can be distributed to charities such as womens shelters to help women in need to have dignity when it comes to their period.
To find a collection point or learn more about what they do, visit their website.
P.S they also have a #itsinthebag initiative where they ask you to fill a handbag with a list of essential items and it is handed out to homeless women at Christmas. I am working on 3 of these handbags to pass on, these are handbags I was no longer using (and still in good condition) so what a better way to give them a new purpose! Find out more about this campaign here.
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.
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.
Tuesday, July 05 2016
When it comes cancer and sharing your story/journey, there is always someone who either seems to know the cure for cancer or has some advice for you... commonly it is telling you what you're doing wrong and somehow making you feel that you are to blame for it (having cancer).
Quite often I am told if I don't eat sugar and avoid it then my cancer will stop growing and will go away.... or that if I wasn't fat then I wouldn't have cancer.
Another piece of 'advice' I got a couple of months back, was that if I LOVED my cancer unconditionally that it will be unwanted and will just go away.
But what was rather upsetting recently was advice not given to me, but to my little 15 year old sister.
My sister has the same genetic cancer causing gene (FAP) that I have and that my dad had (that is killing me, and killed him)... so you can imagine how hard it would be at her age knowing she has a 100% chance of bowel cancer and has seen her dad and older sister sick from the disease.... it would be rather distressing not knowing if she too would experience what my dad and I experienced.
My sister went on a recent school camp and was asked to share her story in front of her peers, teachers and also to an audience of people attending at a church.
She gave her story and at the end a gentleman stood up claiming to be a doctor and told her "if you avoid red meat for the rest of your life you will never get bowel cancer".
My sister came home all excited and filled with hope. She said to me and my mum "guess what mummy, I am now a vegetarian as I was told by some doctor on camp that IF I never eat red meat again I won't ever get bowel cancer and be cured".
My heart just sank and broke, here she was filled with hope all because someone told her advice that they shouldn't have... regardless of what you eat, if you have this gene you will get bowel cancer.
I had to fight hard to hold back my tears as I told her the reality... I watched that bubble literally burst and it broke my heart.
She had hope... but it wasn't the right advice to be given... he doesn't know our story, he doesn't know our gene and hadn't consulted with our many specialists who are specialists in the field for a reason.
All she could keep saying was "but he was a doctor".
But even doctors should know when to keep their opinion to themselves.
But bless her dear heart, she plans on studying hard to become a scientist to find the cure for cancer.
If you are talking to someone and you are about to give advice of the latest 'craze' going around, please refrain from offerring unwanted advice as the damage can be a lot to someone who is vulnerable, scared and is looking for hope.
Just look at the fall out from Belle Gibson telling people she cured herself of brain cancer, WHEN SHE NEVER HAD CANCER TO BEGIN WITH.
Just remember, words can cause damage... and starting or ending with 'Just sayin' doesn't make it any less of an insult or offence.
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
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.
Tuesday, November 17 2015
Recently, my 18 year old brother graduated from year 12 and in the lead up to his final year 12 exams I gave him a piece of advice that I wish someone had of told me when I was undergoing my HSC in 2008.
I told my brother that no matter what his final marks were, that they didn't dictate his future or his ability to succeed. I told him that I loved him and all I expect is that he do his best and be happy with how hard he worked.
I wished someone had of told me that I was worth something even if I didn't get that perfect 83 that I wanted... or that someone told me that I wasn't a failure because I didn't get that mark. I felt so much pressure to get the perfect grades and that if I didn't go to university my life wouldn't amount to much without that university degree and a huge debt.
While my HSC marks were great (lowest exam mark was a 79 for Extension History *cough* nerd *cough*) because of my grade my university admission mark was only a 55.5, which I only JUST scraped into uni for Nursing (which I had to cease studying due to health reasons) but I until recently have felt like a failure because I am 24 and have no solid career or university degree.
But it took me telling my brother that his life won't be over if he doesn't get into uni, to realise that my life was never over when I didn't get into the course I wanted or because I didn't finish that university degree.. instead I have had a pretty interesting life the last few years and I have done my best to grab life by the metaphorical balls and to make the most of it.
I am a big believer that when one door closes another door opens, and that opportunities exist everywhere you just have to be looking for them!
I always wanted to have a career in health helping people and I thought that it was because I could do so through nursing. But I have since learnt that I can achieve this through my blog and writings and that I want to be a social worker and counsellor. It was through my nursing studies that I realised I was more interested in the holistic picture and the social aspect of my studies and that I can make a difference in other ways. Then I started my blog when I needed to have my bowel removed and an ileostomy, when I couldn't find ANY resources pertaining to life of a young female with a stoma, and so began Feeling Ostomistic.
This wasn't the only opportunity I have found by chance.
I know I don't talk about it a lot, being a taboo subject and all... but I suffer from Borderline Personality Disorder and as my way of coping (in a healthy way) I turn to crafts and keeping my hands and in turn my mind busy so that I can distract myself... this had always been sufficient in helping me to cope. That was until I was diagnosed with FAP and dealing with my dad's terminal bowel cancer when I realised I needed something more dynamic.
So I turned my coping mechanisim of a creative outlet into a cottage enterprise Made With Love Cards And Crafts, where it quickly turned into a busy little handmade business that became respected not only around Australia but globally too (with products being sent to Ellen Degeneres!!). I had eventually gotten so many orders I had waiting lists and had to turn clients away as I just couldn't physically do all the work. But then my health got the better of me and 18 months ago I stopped taking on orders as it got too hard being in hospital. I sometimes do the occasional card for family or friends but haven't formally taken orders for a while...
But because I now had no creative outlet and was spending weeks and months in hospital, I quickly found myself feeling down and in a bad place mentally. I knew I had to find another creative outlet and venture that could be fulfilling of my creative needs, that was busy and kept me distracted, and also was mobile so that it could come to hospital with me and didn't require being made or supplies.
Then a lightbulb moment happened, and I decided to invest in myself and start Goding Consulting where I offered graphic design (logo, flyers, business cards) and assistance with setting up social media pages. This was a business that I had the skills for, and being entirely based on my computer meant it was 100% mobile and could be taken to hospital with me...
In fact it was so mobile that it followed me to Sydney for 5 weeks during my hospital stay and RPA media called me "a hospital bed entrepreneur". I have taken a break since October 2015 to focus on my health more.
So 7 years on since my HSC my marks mean nothing to me and hasn't dictated the path I have created for myself.
My marks didn't dictate my self worth or my lack of future accomplishments, it just made me determined to look for my own opportunities and make the most of what life gives me.
So to all those students whom like my brother are awaiting their final marks, I hope that this message helps give you perspective that there is life after year 12 and there are plenty of paths you can take... just be mindful of the opportunities that present themselves as they might not always be obvious and will need to be found... but they are out there!
Tuesday, October 27 2015
I have spent a lot of time over the last couple of years in hospital, often my stays (90%) have been in the public hospitals as a private patient and while you don't always get a single/private room due to these being given on an availability or clinical needs basis, it often means you are needing to share a room with other people.
There are two types of shared rooms in a hospital, there is twin share meaning there is one other person in your room or their is a 4 share room meaning you are sharing a room with 3 other people whom should be of the same sex as you.
I just got home from a 12 day stay in hospital and it reminded me of this post I started writing earlier in the year after having had spent 5 weeks in RPA and it was a horrible time mostly because I feel that others don't quite know or understand the etiquette that should be practiced when sharing a space with others... mostly it comes down to being respectful, but I will share some etiquette that should be followed (and if you have your own feel free to comment below).
Hospital etiquette when sharing a room in a public hospital
#1. It is not the time or place to LEARN how to play the ukulele
#2. Use headphones
#3. Rest periods mean rest periods
#5. Being in hospital isn't the time for a get-together
#6. Try not to be so negative
#7. Do not talk about others behind their backs
While this is just a short list of etiquette practices that should be followed when staying in hospital and sharing a room, it is important to remember to treat others as though you would like to be treated and it should just be common courtesy to be mindful of your surroundings and respectful of other's right to quiet and privacy.
If you have had a bad experience when sharing a room, feel free to comment below.
Thursday, October 08 2015
October over the recent years has become known as the 'pink month' a month dedicated to the sole purpose of raising awareness of breast cancer but also to encourage women young and old to take charge of their health and become more breast aware.
It wasn't until a breast cancer scare earlier this year that I realised I needed to be more aware of my breasts (even though they're so in my face I can't not know they're there) but more be more aware of the changes and dangers going on inside.
In February I had my routine pet scan which my thyroid, breast and stomach lit up on the screen. I was told that there is something suspicious going on in my breast (left) and that I needed to have it checked out.
The following week I was admitted into hospital to undergo a bunch of routine investigations into my breast, thyroid and armpit. First I had the ultrasounds done on my thyroid and breast and stomach, which were followed by fine needle biopsies done of my thyroid, stomach and breast.
The breast biopsies were inconclusive, so I was scheduled for core needle biopsies, a mammogram, another biopsy this time putting in metal clips as identifying markers, another mammogram, then a CT scan a few days later.
Thankfully my breast wasn't cancerous and I am monitoring it every few months for changes, and while I am lucky that the changes going on in my breast were detected early, there are thousands of Australian women who aren't as lucky.
Did you know that in Australia 1 in 8 women will have breast cancer by the age of 85? Breast cancer is up there with bowel cancer as the leading cause of death among women (according to the ABS).
So I am wanting to raise awareness of breast cancer this month and also as a unique way of celebrating 200 likes on Facebook (thank you all for the support), I decided I would set a little challenge!
If you head over to my facebook page by clicking here, you will find an album of 10 FREE fb awareness covers for you to download, save and upload, these you can see below.
But there is a catch....
As I have created these awareness covers for you to use for FREE, I ask that you join me on a challenge I have set for this month...
#1. I ask that you become more breast aware this month by giving yourself a thorough check of your breast and armpits for any lumps of noticable changes. If you're eligible to visit the breast van for screening, look into making your appointment. You can also speak with your GP about having a breast aware check done.
So... will you join me this month towards being more breast aware?
Not sure what involves a breast mammogram, biopsy or breast ultrasound? Stay tuned for these posts coming soon!