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Feeling Ostomistic
Sunday, June 17 2018

 Attention:

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!

Posted by: Talya AT 11:04 pm   |  Permalink   |  0 Comments  |  Email
Saturday, April 21 2018

Disclaimer: This blog post contains spoiler alerts for Irreplacable You and discusses themes around Anticipatory Grief and cancer.

I spend a lot of my time watching TV shows or movies online via netflix, that it is often the only way I can try to escape my surroundings or my reality faced. Sometimes you come across a doozy of a show that has you wondering how you could get back those wasted 90 minutes of your life; other times you stumble across the goods.... but then there are times where you start to really get into a show only to learn that it is actually about cancer, and when you're trying to escape your cancer riddled reality, often these shows just aren't what the Doctor ordered when he said to "Netflix and chill".

Sometimes it could be handy if a show came with a disclaimer/warning, similar to that of the warnings put in place in Australian media when warning that there may be footage/images/voice recordings of deceased Indigenous Australians which may cause distress for viewers:
 "WARNING: Aboriginal and Torres Strait Islander viewers are warned that the following program may contain images and voices of deceased persons.” (ABC) This source also explains the cultural signifigance and meaning behind this practice too. 

With this in mind, there should be something similar to be considered when it comes to TV shows or movies that involve cancer, especially to the point that it may cause distress to viewers with The Australian Cancer Research Foundation stating that "most Australian's will be exposed to cancer at some stage in their life either personally or through family or friends" as sourced from "Cancer in Australia in 2017". When you consider that the Australian Cancer Council state that "1 in 2 Australian Men or Women will be diagnosed with cancer in their life before they are 85", that is a HUGE portion of the population that are exposed to cancer either inadvertly or advertly.....

So surely a duress warning is warranted after all, due to the amount of population exposed?

When a show ends up revolving around cancer or the premise of dying, it can be rather emotional watching it and if you're in a bad headspace mentally like I have been lately, you just end up bawling for hours on end and can sometimes lead to feeling in a funk for days if not weeks and can even unravel how well you are indeed coping with life. 

Very rarely however, I can find myself actually learning something from one of these movies or shows; which is rather surprising and unexpected when it does happens. I recently and surprisingly learned that how I have been feeling in regards to my prognosis, actually had a name!

Anticipatory Grief: The grief you experience without realising there's a name for it!

I recently stumbled upon a Netflix Original Rom-Com (romantic comedy, how it is a comedy is beyond me) called Irreplacable You, which introduced to me the term Anticipatory grief. Once I heard it, that this phrase actually had a name for it, I felt somewhat calmer about all the shit I had going on in my mind and started to get some clarity within myself. Choosing to read on may contain in spoilers of the movie, so spoiler alert friends.

But knowing about anticipatory grief made me feel normal in what I have been spending so long trying to process.

Anticipatory Grief, as presented in the movie, was in the way that Abbi (the lead, the protagonist of the story) was so caught up on being worried about how her partner (and fiance) Sam would cope after her death, that she created an online dating profile with the aim of seeking out "the right woman" whom she could ensure would have Sam's best interest at heart and that he would be okay and taken care of. Abbi was so focussed on making sure that everything was ready and prepared for that she had hoped this would make her anticipated death easier on herself and those around her.

It had the reverse effect as it made Abbi so focussed on life of her loved one's after she was gone that she lost sight of the living and the being present in the now. She alienated herself and by pushing Sam into another woman's arms, she lost him too. They did eventually rekindle their relationship and the day their wedding was planned for, it became her funeral, as she had died in the days prior.

But it really made me look long and hard at my own life.

I didn't know that there was such a term as anticipatory grief, and I hadn't realised that I had been living and navigating through it.

But once I knew that there was a name for a lot of what I have been trying to do, for the sole reason that I had died, such as:
Writing letters to my loved ones;
♕ Leaving behind memory boxes;
♕ Doing special things such as the photoshoot with my sisters as they wanted a letter and nice photos of us sisters together;
♕ trying to tidy up our finances so Russ can manage on his own and with ease;
♕ Planning my own funeral so that others could focus on their grief;
♕ or even in leaving gifts behind for future milestones I will have missed.

There have been other moments I experienced Anticipatory Grief without realising it:

I remember breaking down crying at my mum's wedding February 2017, like I mean full on hysterical tears. Everyone (all my siblings) were dancing and my mum came and sat with me and hugged me. She asked what was wrong: that was when the tears started and they wouldn't stop. I felt so guilty that I was ruining her special night with my sadness and grief, I was just so sad at the thought of all future family events and milestones I was going to miss, such as the wedding's of my siblings, and it all just got too much for me. I apologised afterwards and the following day, mum said it was okay and she acknowledged that it must be hard.

But I didn't know then that it was anticipatory grief, it also wasn't the only occasion that has thrown me for six either:
I remember tears felt for my nephew's first birthday as I was surprised I was still there to see him celebrate (was 6 months since entering palliative care), but the thought of him growing up not knowing me or knowing how much he meant to me does still upset me. For his first birthday I named a star after him, for his second birthday I got a bunch of kids books and wrote a heap of heartfelt inspirational messages inside each one, that I hope will help motivate and inspire him in the years to come.

There are so many other times too, poor Russ has had to deal with me and the various stages of my grief for so long. He sees it all and knows this stage is hard for me.... it is hard knowing that life will go on and that I will miss out on things, but I am also worried my life would have meant nothing or I would be easily forgotten, so I am trying to do memorable stuff and make a difference as I don't want to be forgotten... which is another form of anticipatory grief.

I often break down at the thought that Russ and I won't get to live out our dream of sitting on our back verandahs in our matching rocking chairs just laughing and chatting together, or we often find ourselves talking about our 10 year plan and what we will be doing without thinking and then it hits us and one of us is crying. I get upset at the thought of missing out on having a career, missing the wedding of my best friend and siblings too. I was fortunate to live to see one friend get married last November, a day I didn't think I would live to see, and we both hugged and cried so much that day she just kept saying how happy it made her that I could be there and the feeling was mutual, gah - I am crying now just remembering that powerful and emotional moment.

I must admit the thought of Russ moving on and finding love after I've gone has been on my mind a lot, but not to the extent (yet?) that I would actively seek out my replacement and set him up before I had died (like Abbi, in Irreplacable You); I know I tend to do things a little pre-emptively, but that (seeking out my own replacement) for me is a little too much. I had considered writing a letter to whomever came after me, but trying to put that pen to paper was just far too difficult everytime I have tried. What do I say or how do I begin, "so you're banging my husband and could give him a life I couldn't because my body was too stupid go ahead and have fun kids"... nah, it is too much. I want him to be happy and hope he isn't alone but at the same time I often cry at the thought that he will have a life I won't be a part of and I won't be here and it hurts thinking of him having a family and having a relationship with someone who is normal and can do normal things like walk or shower without assistance, and who isn't such a burden. I do worry about him though, if someone takes advantage of him when he is vulnerable (such as take our house from him) or his next partner doesn't understand Autism, how his mind works and just how patient you need to be at times; he says he probably won't try dating again. 

Noticing anticipatory grief in those around me:

Now that I know that it (anticipatory grief) exists and it has a name, I have been noticing it more and more in my own everyday life and pracitices. I have also been noticing the anticipatory grief that others have in their interactions or behaviours towards me.

Ways or some examples have been:
- Not inviting me to something because it was easier to exclude me than to try and accommodate me;
the list could go on but I would be here for days if I listed the experiences faced, and you'd be horrified if you knew some of the truth too.

Time for change, let's talk about Anticipatory Grief to Normalise it:

For so long I have felt guilty or ashamed for feeling grief or grieving over the loss of something due to being terminal, such as: the loss of friendships or social relationships; loss of my independence and being so reliant on Russ; loss of my ability to do normal everyday tasks such as dressing myself, showering, even walking; I know I felt grief over the loss of my bowel; grieving the loss of my connectedness to my community and feeling like I don't offer a valuable contribution to society; loss of career prospects; loss of being able to have a family and fertility.

I wished I knew then that anticipatory grief was normal and that it was what I have been feeling for all this time, it might have made accepting and acknowledging these feelings easier, rather than bottling them up because I felt like something was wrong with me for feeling how I did and feeling like it was all trivial, not realising this is a totally normal process and grief to experience.

Perhaps if people read more about anticipatory grief, they might then know to speak with a mental health professional to help work through their issues, like I currently am.

But most importantly there is nothing to feel ashamed of for feeling this grief or for grieving the life you're going to lose, it is only natural, but finding the right counsellor to help you through your issues is key. If you don't feel they are a right fit, try and search for someone who is.

Know you aren't alone and what you're feeling is completley valid, important and worthy of being acknowledged.

Posted by: Talya AT 02:25 am   |  Permalink   |  1 Comment  |  Email
Friday, 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.


My Interview with Krystal on Ostomyconnection.com

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.

If you want to read the original interview or to read issue 2 of the ostomistic life magazine the link is here.

You can also find Krystal aka Bag Lady Mama online via:
Instagram @bagladymama
Facebook @bagladymama
Twitter @bagladymama
Or her site/blog

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. 

Posted by: Talya AT 11:03 am   |  Permalink   |  0 Comments  |  Email
Sunday, February 04 2018

If you could see me right now, you'd see that I have THE biggest grin on my face. Imagine a Cheshire cat style grin....

Yes, it's that huge!

Why?

I recently got home after a short stint in hospital where on Australia Day I almost died, it has been a rather upsetting and hard fortnight but I am home now and recovering (and catching up on everything).

I am so grateful and acknowledge my own privilege in that I could come home this time, but also that I continue to live for another day.

I was so scared on that Friday as I wasn't ready to die, I had so much I still was yet to achieve and do and finalise. I was scared that I felt things weren't ready and my anxiety since has been sky high, understandably so, worried about when or how close the end actually is - which is looming everyday closer, it is terrifying.

I know I have so much I wanted to achieve and goals I had set both personally and for my blog, which brings us to today's post.

Back when I started my blog 5 years ago I said to myself:
"I want to work hard to help others with their stoma journey, I want to have a blog still valuable in 5 years time and I want to get half a million views and just hope that I have helped at least one person in my time".

So I remember a couple of weeks ago - before I suddenly got sick and went to hospital - I had looked at my site stats as I was updating my media kit for January. It was when I noticed that my blog views were sitting 15k shy of half a mill.

I said to Russ: 
"It would be awesome if for my 5 year blogaversary I hit 500k views and hit 2 big goals in one go!"

I am not writing this as an intended brag post or anything, and I know for some blogs 500k views is their monthly or yearly visit, but I am sharing this as I am feeling incredibly proud as punch right now.

5 years ago I was told I had early stage bowel cancer and was about to undergo surgery to remove my entire large bowel and live the rest of my life with a permanent ileostomy for the rest of my life.

I was scared 

I was alone

But I took a leap of faith and courageously started my blog.

I was worried that people would not be kind or respectful, or that people would be judgemental and rude. I also worried that maybe what I am trying to share wouldn't be read by anyone and wouldn't be providing value or meaning.

I was full of self doubt.

It is quite vulnerable when you put yourself out there and you don't know how this all would work out and how well your blog would be received. Especially given that it is a difficult and personal experience that I was putting myself out there during what is a private time of mine and my husband's life, but I knew that if I shared this openly and what I learned along the way that it could actually be helping someone somewhere. I know it helped me immensely to share this, gave me a sense of purpose.

Back then there weren't many ostomy bloggers, social media (instagram more so) wasn't as huge nor were those publicly sharing life with an ostomy, and ostomy life and living with a bag was such a taboo subject. It felt rather lonely and isolating, felt kind of like it was a dirty little secret and I wanted to try and change that and help the next generation of young ostomates to embrace their lives and stoma.

I had hoped that I could be part of the movement of helping to normalise life with an ostomy and raise awareness of that life as a young person with a stoma is still able and that life won't end.

So with hesitation  I hit publish on that first post and was surprised by what followed.

I was thanked for what I wrote, I found people who respected my writing and it has led to some amazing friendships and I found my tribe and community.

I felt valued, I found self worth and I found that there was a sense of magic in helping others to feel less alone as they navigated their ostomy life or dealing with new diagnosis and what comes next or even in finding themselves again.

I know it is scary and daunting sometimes, but I know how much better it is when you find someone who you can identify and relate to or read something that creates an 'ah ha' moment... I just hope that I have helped others.

My milestone, that I thought back 5 years ago was unrealistic and unattainable but I still held hope and believed in myself and backed myself. I learned a lot in that time not just about life but also about myself.

Thanking you

My blog wouldn't be what it is without you guys, my tribe and cheer squad

Of course me celebrating this moment would be worthless if it weren't for every single one of you who read my blog, support me and my writing and have helped me create a community.

Thank you so much for your support, respect and kindness over this time, but also for your friendship too. Thank you for embracing me and for letting me be myself and helping me at times on my quest to find/discover/remember myself and for reminding me when I had forgotten. 

I want to thank you and show you how much I appreciate you.

I have been looking at ways to celebrate my 5 year blogaversary, reaching half a million views to my blog and being close to 1000 facebook likes. So I am thinking of fun ways to say thank you, so please stay tuned.

What an Ostomistically amazing time it is to be alive!

I am grateful so much for you all and if I have helped you in any way please comment below.

Posted by: Talya AT 12:58 pm   |  Permalink   |  1 Comment  |  Email
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:
#1. I have notice and #2. Providing I am feeling up for it.

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:
I'm not lazy, I am sometimes tired of having to explain and justify my pain or tiredness, but there are days if not weeks or months where I am asleep and resting. I turn my phone off on my bad days or when I have had very little sleep and need un disturbed sleep. So telling me the day before gives me notice for then being able to make sure I am up and ready if I am ready.

#2. My stoma leaks a lot:
My stoma leaks a lot, 95% of the time when I wake I am dealing with leaks. It is really stressful when woken and knowing people are outside knocking and waiting/expecting me. It is something that makes me anxious when I do realise people are waiting for me, as if I am home alone I have to try and deal with a leaking stoma whilist trying to get to the front door quickly (often I miss the postie or courier and have to drive to Coffs to get my parcel). It is also why I get upset when Palliative care would randomly rock up without telling me and then were cranky when I wasn't home to answer the door when I was, I was just in bed asleep... so when my stoma leaks it can take me time to get ready. It means needing to get dressed and cleaned up and clean my linens if needed. It is something that I can need time to be ready, and knowing someone is outside waiting for ages makes me feel more flustered.

#3. I often sleep starkers:
Because my stoma leaks a lot, it is just easier to sleep with either no clothes on or just undies and no PJ pants. Sometimes I wear a top sometimes just undies and no top... so it is less laundry to wash because guaranteed my stoma leaks often in the middle of the night or when I wake and it is hard to have to strip down while trying to do a bag change - all while magically avoiding making a mess! If it is just going to be me home it is best if I know if anyone is coming so that I can have notice and get a chance to get ready. When you surprise rock up it can be hard as my clean clothes could be in the laundry (in the dryer) and I have to try and get through the house with just a dressing gown on and hope if you're outside waiting that you don't catch my streak through the house to get my clothes.... so I need notice if you plan on coming for obvious reasons.

#4. I am often in pain and bedridden:
When Russ leaves for work of a morning he shuts and locks the door as he walks out. So sometimes if I know someone is coming to visit I would ask him to leave the door unlocked and shut. If this is a day when I am barely able to get out of bed it can be stressful knowing someone will arrive and I can't exactly get up to open the door. I was criticised last year (well, 2016 too) when I wasn't much of a host and "don't make people feel comfortable or welcome" because I can't be a host. I think it is hard for people to understand that it is painful and difficult to stand and walk let alone be a hostess. If you come and visit, please have zero expectations of what I am meant to do... don't expect me to go above and beyond to impress you. I am not being rude, you might think I am, but if you wanted a cuppa help yourself. 

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 just surprise visit me and I don't know you're coming, you very well could be having a cuppa without milk. Some days Russ will make his coffee for the day in his thermos and takes it to work, it is a guzzler for milk. So its very likely that he uses the last of his milk as he leaves for work knowing full well that he has to buy milk when he finishes work in the evening.

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:
I always will try and attend something regardless, but there are times when I am in too much pain or phsyically unable to attend. Giving me warning and time in advance of a visit gives me the chance to cancel within reason. If I had notice I could tell you ahead of time to not waste your petrol in coming up if I wasn't up for the visit, I would hate you to be disappointed with your visit or feel like I wasted your time. If you surprise visit me I can't give you the chance to avoid being disappointed with me.

#7. Our house mightn't be visitor friendly:
The entire household chores and running falls mostly on Russ' shoulders. He also works full time. He has a roster system of how he does the house, one day he does the rubbish and kitty litter (and every second day) and some days he would do the bathrooms or vacuum. If you surprise visit us, we will feel embarassed because the kitty litter might be due to be done that day or the rubbish. It can be hard when you surprise visit that I am anxious if you are judging us the entire visit and will go off and tell others about how we live, which has happened, and makes us less inclined to invite you back. 

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.

Posted by: Talya AT 10:19 am   |  Permalink   |  0 Comments  |  Email
Sunday, December 10 2017

You don't need me to remind you that Christmas is around the corner and fast approaching, I am sure everytime you step into the supermarket you're reminded with visual cues.

But just in case you live under a rock.... there are exactly 2 Sundays left until Christmas.

so #keepcalm, don't panic - you've got this!

I have always had this dream of hosting Christmas one year, not realising the full extent of what that might involve, I naively and dutifully spent time preparing and getting the house and ourselves ready last year - as it was indeed my turn.

As my family live 2 hours away, this meant they needed to travel up the night before (for those who stayed the night) or the next day (for those who didn't stay). I am the oldest of 10 kids, then there are our partners and now nephews, so there were a lot of people coming for the couple of days.

So here were the things I did to help myself prepare and get ready for having guests over the holidays or throughout the year, based off of various guest's experiences or feedback over the past year....

My 10 top tips to getting ready for guests at Xmas time: 

#1. Ensure there is plenty of toilet paper:
It is just usually my husband and myself, so we buy our toilet paper from Who Gives A Crap which is good stuff for your bottom and the environment, plus every roll of paper goes towards giving someone access to a toilet for a week. Living with bowel relatable illnesses for years, I know how important proper sanitary access is.

So a normal shipment lasts us 3-6months, but as we were having around 15 extra people in the house we decided to order our shipment early and have toilet paper supply at the ready.... last thing we wanted was on Xmas day to run out and the shops are closed. I felt a little less stressed knowing that we had ample supply.

#2. Knowing the meals or menu ahead of time:
A month before Xmas I had finalised the meal plan and menu for Xmas day, I had spent the month beforehand getting input from family attending on the day and curated a menu that I then knew was to everyone's liking. I asked people to bring their own alcohol or seafood, as everyone has their own preferences and that shit is expensive, so this helped me to stick to my budget too.

By having the meal organised ahead of time it meant I could shop where items were on sale and could get things such as soft drinks when on sale and kept aside. I just had to get the fresh stuff like bread rolls, meats and salads Xmas eve.

By also knowing what I needed to grab Xmas eve it made a quick dash to the shops a breeze, we even had to get the wheelchair out, but we had a list, we checked it twice, and we were in and out of there in a jiffy. 

Yes, I designed and sent out a flyer for Xmas day - I informed the menu plans, what they needed to bring, accommodation options and also offered to wrap presents... I think the last part people may have thought I was joking about. But Talya doesn't joke when it comes to wrapping presents - I love it!!

#3. Prepare things before Xmas day:
I am unable to stand for long periods of time, so cooking is something I delegate to Russ nowadays as it gets too painful and tiresome. If I can prepare things seated, I will. But knowing my lack of energy and ability to cook I knew I couldn't be the host slaving away in the kitchen all day and as a result missing precious family time.

So I had most things done the night before in the fridge, then I spent some time in the morning quickly doing the salads and cooking some foods. I was lucky and grateful that my family did most of the cooking for me, it made the day less stressful.

#4. Ensure your guests have easy access to items:
I know when I have been a guest at someone's home, I always felt awkward when asking where things were such as toilet paper, towels, soap etc. So keeping this in mind, I tried to make my guest's stay easier.

I know if I am resting people don't like to bother me, but I know this is out of a place of courtesy and caring but also they don't wish to be a bother. So I tried to organise my guest bedroom and bathroom with this in mind too, trying to keep people feeling welcome and at ease is important to me... as I do hope people come and stay again.

So in the room I have a basket of various toiletries and items I have collected throughout the years. Whether it is hotel soap or shower caps, or a pack of disposable razors, or pads/tampons, or even sunscreen and aeroguard. Most items were on sale or as part of a 3 pack and were naturally spares. I also have toothbrushes too, in case a guest forgets theirs. I also have spare heatpacks too.

I hope that by having all the items one may need readily and available to them, that it might help offer dignity to their stay.


The basket looks more full now, but this was the first items put in there. I just add things when on sale etc.

#5. Have plenty of towels available:
When you have over 10 people staying in your house, you need a lot of towels!

I spent the weeks leading up to Christmas re-washing our spare towels (they had been in storage since the move) and made sure that these were fresh and in ample supply. I gave at least 2 on the bed for each guest (in case one was needed for hair), along with a face washer, soap bar, and had all of this ready for when they arrived.

In the linen cupboard were 50 more towels ready, we just wanted them to be prepared.

#6. Have empty and clean bins near all toilets:
I found this tip on a blog by Rebecca Senyard who blogs at "The Plumbette" which said to save your plumbing this Xmas, to have an empty bin near your toilets for guests to dispose of sanitary items. I was shocked to think people flush them, and as a home owner, I would hate to foot the bill to repair the plumbing (especially over Xmas) because something blocked it. Gross!! So to avoid this fiasco this Xmas pop a bin nearby, if you already have a bin there just be sure to make sure it is empty before guests arrive! This again helps your guests to have dignity when they visit too!

#7. Have a toilet plunger, toilet brush and spray ready too
As important as step #6 is, this one also applies. Guests may require the use of a plunger, toilet brush or spray, so make sure you have your bathroom stocked and ready for guests this Xmas. Saves them the embarassment of needing to ask.

#8. It's okay to need 'me time' and step away for a breather
I am a person with high functioning anxiety, I tend to get overwhelmed very easily and even around my family or in social settings sometimes I don't say much or I just say drivvle because my brain just freezes and I just don't know how to act or what to say. I tend to be over analysing every word said, every social cue, what someone is thinking of me, and this is rather tiresome.

It can be hard when you're hosting Xmas or any event as it is your house and everyone is there or everywhere, you tend to feel a bit overwhelmed. It is important to have somewhere in your house that is YOUR (underline YOUR) space and somewhere that is off limits to everyone. You might not necesarrily make this a known no-go-zone or add signage to the door, but as long as you know you have somewhere you can escape to it will help you.

I love my family, I love spending time with them, but there can be times where I need to just disappear for 5 or more minutes for my ability to keep calm and carry on, so when it is at your house it can be harder. So have a space where you can just be alone to regather your thoughts or to practice mindfulness techniques or to just take a breather... it is important to know your own limits too. This can be a form of self care too.

#9. Have a fan or cooling option available, especially if it is summer
Here it can be pretty hot and muggy (humid) around Christmas or Summer, so while we have ducted air conditioning, we also have a pedastal fan in the guest rooms to have options to what makes them more comfortable. It is hard sometimes in Summer to get a good night's sleep, so if you have a big day planned your guests might need plenty of rest.

A fan is good too, as sometimes people have trouble sleeping away from their own beds and a fan offers white noise which may help them to feel calm or relaxed, even if the fan is kept in the cupboard in their room for example, it gives them the option of not having to ask or be embarrassed because they need a fan.

#10. Have fresh linens on the bed ready when guests arrive
When you know you have guests arriving, especially if they are having to travel, having their beds already made with freshly washed linens will help them to retire early if they are tired without the delay of waitiing for sheets to dry or the bed to be made; and by having the bed ready to go when they arrive, your guests can rest whenever they need to without the embarassment of needing to ask. I know when I travel I am in pain and I often just want to have a nap, so it helps to have this all ready for them when they arrive.


Dusty loves when people visit - as do I!

bonus tip #11. Have plenty for your guests to do
I know not everyone likes to be social 110% of the time, so we have tried to have things that people can do if they wanted to. Whether it be a TV in their room to watch their own TV shows (my MIL always watches Star Trek or Castle box sets when she visits) and having a spare TV means we aren't bothering each other with our own shows. We also have a board games cupboard with a massive range of games, not to forget our book shelf with heaps of books, or our large DVD collection. We also got some toys for when young children visit and to keep them occupied.... we have bikes and spare helmets, a dart board too, we have so many different things that we hoped guests won't find our place boring... we aim for fun yet inviting, so it is a work in progress!

So while I know there are plenty of ways to help prepare yourself and your house for guests, whether it is the holidays or anytime during the year, these are just some of the ways I have tried to ensure my guests had a good time when they visited.

Wishing you a lovely holidays, hope that you have a wonderful time with your family or friends and thank you for your support during this year and beyond, it really means so much to me! Every comment, message or email doesn't go un-noticed and are very appreciated.


Merry Xmas and a Happy New Year from my family to yours (2016 photos)

p.s what other tips do you have for getting your house ready for guests or to ensure guests have a good stay? Let me know in the comments

Posted by: Talya AT 09:31 am   |  Permalink   |  0 Comments  |  Email
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:
20 Aussie Ostomates who you can connect with on Instagram.
You can read the article by clicking here.

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 

 

Posted by: Talya AT 12:54 pm   |  Permalink   |  0 Comments  |  Email
Sunday, August 13 2017

It is hard to believe that it is almost 12 months since we have moved into our new house! 


Top = today a year ago; bottom = recent picture before the birds of paradise
were planted under the window shown. Behind the fence is my koi pond!

I have been so busy trying to live and love life, plus enjoying the good days, that we haven't yet completed unpacking our house and we have so much left to do. This has had me feeling rather disappointed in myself as I was really hoping to have had the house set up and finished by now. So while we have nothing planned for the next few months, I really want to focus on finishing the unpacking and working on styling the house.

Having a beautifully styled house that I am proud of is one of the things I wanted to tick off my bucket list!

The first room I want to finish is our master suite (bedroom and ensuite). I spend so much time in my bed, bedroom and ensuite, that for me it is my most used/lived in space. I really wanted the room to make me feel happy, safe, comfortable, relaxed and proud; but more importantly, I want others visiting me to feel the same sense of comfort.

I had hoped by now to be able to have afforded a full room makeover, or to be on our feet financially for that matter. We have been adding pieces to the room as our budget has allowed us over the last year, but we still have a way to go. I love a good bargain and hunting for things
on sale. I also like to use my phone or laptop to browse and compare different products/prices online. We don't have a lot of money so I need to ensure that our money is well spent.

Russ thought it would be a good idea to perhaps write a blog post as a wishlist of what we want to achieve so that in a way we can hold ourselves accountable for ticking off this goal of finishing the house, and especially our room.
 
So, this is the accountability post for completing my master bedroom and my wish list for the tropical styled things I want in it.

I promise to do an 'after' or finished/completed type post, otherwise I will share the gradual progress on social media until then!

With spending so much of my time in bed, or unable to get out to shop in person, a lot of that time is spent just browsing sites to get a clearer picture of styling/product ideas. It is always nice when companies have a good online store with stock updates that are timely and reliable. If they have social media too you can see how other customers are using their products to style and get ideas from actual users of the products. I know I browse through Fantastic Furniture and Pillow Talk online all the time (as they are two stores close to where I live), always keeping an eye out for sales or new stock. I have a few other sites that I regularly do the rounds to check for the latest products, styling ideas or latest sales (I wish the reject shop had an online store), it really does help to pass the time when you are otherwise stuck in bed.

Another way to pass the time and find inspiration is Pinterest! I only hope I can create and style a Pinterest or Instagram worthy house on a budget!

Why tropical?
I wanted to choose a tropical styling for my room as it could be a way of adding my favourite things: timber, cool white, actual greenery and more vibrant colours without these elements being too overpowering or clashing with each other. I love birds of paradise and grew up with a frangipani themed room, so tropical has always been rooted in my core. We have birds of paradise in one of our bedroom windows as well as a frangipani tree in the garden we can access via our master ensuite. A tropical room has always been a dream of mine!

Quilt:
I really wanted a quilt that was bright, fun and certain to help lift my spirits on days where I'm struggling. I wanted it to be a way to motivate me each day - 12 months on and this quilt still does all that.... I purchased the quilt from Pillow Talk (it is now unavailable) before we moved house, along with the matching print on the wall (see below). I used these two items to start my tropical themed room. I know it isn't traditionally tropical but it is as I say "contemporary tropical" or that's how I've interpreted it. The quilt means I can add pops of colours into the room without seeming untethered to the core concept.

 
My beautiful, fun, bright and happy quilt from Pillow Talk & my bed

I am hoping the quilt isn't the reason the styling of the room falls apart, so I am hoping I can make it work to pull it off! I really love this quilt especially as on the reverse side it has this nice aqua colour + it matches with my purple (fave colour) sheets, so not sure if I want to part with it. However, if necessary to better the room then I might, but it makes me feel so happy and that is my priority!

Were I to change quilt covers if I felt it (the above quilt) really wasn't a fit, I have found some others from Pillow Talk and Spotlight that I have pictured below. It is so hard to choose what one I like the most, so these are my top 10! Pics to the left are from Pillow talk and pics to the right are from spotlight respectively.


Again not sponsored, these are just my favourite choices.

Bed:
I absolutely love my bed (pictured above)!

We purchased it back in 2012 from Beds R'Us and it was looking amazing until Dusty recently decided it was in fact his clawing post (I cried, it was heartbreaking to see/hear). I had thought about upgrading our bed but my heart is too set on it. It is a king size; it is leather which is easy to clean; it is white which means ANY quilt cover looks great and that it can be suited to any theme; it is the right height for me and doesn't hurt to get in and out of like our timber bed before; and besides, it looks so elegant too!

I know Russ has thought about upgrading our king bed maybe after I die, he feels it is too pretty for a guy and too hard to keep clean because it is white, not that he wants to remove my existence from our home- just he might feel like a change, who knows? If he/we did upgrade this is one that he has his heart set on. 

I know he likes timber beds a lot (we have 2 timber beds in the spare rooms, one was his from when he was a bachelor up until we upgraded to our white bed). We were looking around Coffs recently at the different options of tropical-esque furniture and he decided he really likes the 'Toronto King Bed' from Fantastic Furniture


Toronto King Bed plus bedroom package suite from Fantastic Furniture

Something to note is it is made from Acacia wood sourced from sustainably grown plantations (which is a tick from us as we try to be environmentally conscious), but the beauty of this timber is that it would beautifully match a tropical themed room! It is a bargain at $799 with 6 years warranty too (I think Russ is all for extending our warranties from his job as a salesman), as opposed to the $3500 we paid for our current bed, so if we/he upgraded it is a nice and affordable option indeed. Felt pretty solid too.

TV Stand:
Russ had said 11 months ago that he would organise some mates to come help him mount the TV in our bedroom, I hate being a nagging wife, but sometimes nothing would get done if I didn't keep asking. Most of the time I think he isn't listening but then some days he surprises me.... like last week. 

I have been wanting the TV set up in our room so that I could watch Netflix, a movie or catch up on missed TV shows. I'm not well enough to sit out of bed for long most days, so having the TV in the room would help. I am struggling typing or holding my phone and iPad the last few months, the nerve damage from chemo and the tumours are making it painful to touch things. I try to use my iPad but it is frustrating sometimes at how small the screen is or at the lack of sound (remembering I am deaf in one ear) so it makes sense to set up the TV where I can see it comfortably.

So Russ one afternoon last week told me to stay in the lounge room as he had a surprise planned... surprise (see picture below)! He had set the TV up on top of some cheap/flimsy bookshelf from the shed. Doofus! I loved the sentiment, but I am so worried as Dusty is a climber who likes jumping on shelves. But it has been great the past week enjoying TV from the comforts of my own bed!

We have been looking into options to put the TV on. It needs to be at a height of 900mm or higher due to laying in bed and not having a clear view if any lower.

So we have found two options: We thought that a chest of drawers would give the best height plus allow for additional storage. Russ wants the tall 4 drawer as it is 150mm taller than our current set up, but aesthetically I think the 6 draw would look and fit the space better - though it is 100mm less (but TV is awkwardly watchable). The two we like are in the Toronto range from Fantastic Furniture and there is only a $100 price difference. I can't decide, but once we do we will enquire into layby options to pay it off over a set period which makes it more affordable. I know $599 or $699 respectively might not seem like a lot - but it is for us when there isn't a lot in the bank.

Chair:
I always felt awkward on days where I was bed ridden and loved ones or palliative care nurses were visiting me. They were always either standing around or sitting on the bed next to me. A friend flew up from Sydney for my birthday and while she was here I was in bed with so much pain that I was unable to get up. I ended up having to text her to say "help yourself to the kitchen" so she came in and she layed herself down beside me, we just chatted for hours (it reminded me of sleepovers from the good ol' days). But I knew we needed to organise a chair sooner rather than later. So a chair was top priroty on our list of room additions.

We needed to get a cupboard for the hallway (can never have enough storage) and Super Amart had a 'buy one get 2nd item half price', so we only paid $225 for the armchair (it all went on our G.E. interest free card)! It is the 'James' and is the same as the lounges in the living room and it is wide enough so I can sit in it comfortably - if I want to sit and read, it has big arms and is really spacious. Russ often sits there reading a book while I am sleeping, especially on my bad days, so that he can watch over me and feel he is close by. Dusty also has claimed the chair as his, so just like every other part of the house this was business-as- usual.


As a family we all love this chair!

The chair for us was a must have for the future too. There will come a point when I am declining in my health and I want people to visit me and be comfortable. Russ tells me that it is 'typical Talya behaviour - always thinking of others needs', but all I want is for people to want to visit. It is a fear that I will be dying and be alone and I don't want to die not knowing that I am loved. So this chair is important and it gets used often.

Bedside tables:
I currently have 2 x white wooden bedsides I got from Fantastic Furniture way back in 2011 that still look in new condition. I like that these are timeless and can go with any trend/style and are sturdy. With a big cupboard space I have put baskets in there filled with medications and syringe safety bins for my Clexane injections. So keeping these and using them will save on costs, which is always nice when you're styling a room on a budget.

Wall Decor:
I have one framed print of a birds of paradise that matches the quilt (pictured below), but with so many walls still bare in my room it can be mistaken as being clinical. I want to get some wooden shelving, cubes or hexagons to make a wall feature which doubles as storage to have some plants around the room and to hold other little nick-nacks.


Birds of Paradise framed print from pillow talk

When we were in Fantastic Furniture recently I stumbled across this flamingo canvas artwork (below) that has all the colours of my quilt and is keeping in with the contemporary tropical theme, Russ really liked it too, so we are hoping to get it when we can afford it. It wasn't much, around $49 from memory.

I also enlisted the help of Foote and Flame to cut out some bamboo shapes of different tropical leaves so that I can hang these around my room and make an art piece from it. I also found some cheap tropical leaves in Kmart for $3 in various sizes and styles too. I know pillow talk have some too. I am hoping on the next day Russ has off to look at placement of the wooden and artificial leaves. 

Nick-nacks:
I have been keeping an eye out over the last year for different tropical themed pieces or even nice wooden decor, and trying to nab a good bargain. I have my eye on some timber framed artwork, some timber pineapple frames and other odds and ends like fake succulents. I really want to have some fake plants around the room to fill the spaces (My thumbs aren't green and Russ is not always home). 

I know we are trying to fit a lot into such a small space and I do hope that in the end it all looks as homey and relaxing as it does in my head. I am hoping now that I have written this that it holds Russ and I accountable for getting our house sorted. I know 12 months ago I didn't think I would still be here today and I know the outlook isn't too great for the next year, but I just really want to feel calm knowing my house is in order.... literally and figuratively! I want to not feel anxious over if I have done enough or if people are judging me.

I am really wanting my room to be my tropical escape as I won't have the ability to travel there myself I want to bring it to me.

I am also not an interior designer or stylist, so I don't know if the mood board I have in my noggin' is going to work, I will just have to see won't I!

If you know of any tropical themed wares over the coming weeks and months feel free to let me know so I can check them out. I am really wanting to have my room finished by Christmas/New Year at the latest. Plenty of time I know, but if the last 12 months have taught me anything it is that Russ is a snail (when it comes to getting things done) and time certainly does flies by!

So tell me, do you have a themed/styled room or house? Which room of your house is your favourite?
Comment below or join the conversation on Instagram or Facebook search @feelingostomistic or twitter @feel_ostomistic

Posted by: Talya AT 08:15 am   |  Permalink   |  0 Comments  |  Email
Thursday, July 06 2017
I know I am pretty slack when it comes to updating posts on my blog the last few months, I have been having fun microblogging over at Facebook and Instagram as it has been more convenient to do updates than to do a blog post due to my health (and sleeping 20 hours most days). If you're interested in knowing or understanding more about what goes into a single blog post and why it can take hours to do one post, the wonderful Micheala from Not Another Slippery Dip recently shared an insightful post which you can read by clicking here!

Sometimes ​the internet can be a beautiful and magical place,
I know I have seen the impact and difference that social media and the internet has made to my own life and those around me, but to see complete strangers come together on several occasions this past year to help us is truly heart warming. People whom I only know from their online presence and otherwise would not have met them, have became good friends to me and have helped to create what has been the most amazing 6 months filled with memories and moments I cherish and I hope that they will too for years to come..... this post is just one of those magical moments created!

Background:

So all the way back in March (I told you I've been slack with my posts) was Russ The Ostomistic Husband's 37th birthday! What eventuated from me feeling guilty that I had ruined his birthday actually became one of the most beautiful gestures I have seen from people from all over the world!

On that same day I was being admitted to hospital for a bit of a respite break and to get my pain under control, it had been weeks since I had felt some relief.

Russ had to work that day, so it was a pretty early start for both of us as we packed my bags and Russ got ready for work and dropped me off to the hospital before he headed to work. Thankfully, my room was ready and available (surprised as it was 7.30am) and he helped me to get settled before he left.

But I felt immense guilt, it was his birthday... his day to be spoiled and showered with love. After all he makes me feel loved everyday and especially made sure I knew how much I was loved by others with the gofundme page he set up for my garden, so I wanted him to know just how many people care about him too.  


Russ visiting me in hospital with our furbaby Dusty! High-5!

What came next:

After chatting with my friend Kylie from Kidgredients in the lead up to his birthday, she suggested putting a call out on social media and asking people to write "happy birthday Russ from __insert location here__" and then take a photo of that piece of paper with a little bit of the background.

I went out to dinner with Russ the night before I went into hospital as we both had a free steak from Hogs Breath as our birthday steaks (a part of the frequent diners club you get a steak during your birthday month), so while Russ was at the toilet I took the chance to write my birthday message on a napkin and ran outside to capture it. In the background above is the iconic whale fountain.

What came next from my post was unexepected!

I was blown away by the response and all the thought and love that was being sent my way.

I even felt like I had travelled the world in one whole day, and seeing all the locations - my heart was heavy with love and excitement knowing how happy this made me feel- I knew Russ would feel the same way!

So once all the images were received (there were hundreds!) I then sent them over to Kylie who then turned the collection of images into a video slideshow!!

You can see the video slideshow here!

Sadly, not all could be fitted on the slideshow and if yours didn't appear please don't fret as Russ sat there individually looking at them on my phone for the next hour, so it wasn't forgotten or unseen and he appreciated it so much.

So 5pm came around and shortly after Russ arrived at my hospital room. I then filmed him and his reaction on facebook live, which you can watch below.


Russ loved the beatiful gesture and seeing all the different locations

Russ' response:

Russ sat there re-watching the slideshow a few times and even sat there for a long time scrolling through all the photos. If you couldn't tell from the video above he was in tears. The love he felt and knowing that so many people cared enough to take time out of their busy lives to do this, really meant so much to him.

Russ is one of those amazing guys who does so much for others without hesitation or needing to be asked and he doesn't ask for anything in return. He is the most loving, caring, kind and compassionate person I know: and he deserves to be recognised and rewarded, even if it was just for one day - his birthday - it just meant so much to him.

It is hard most days just knowing how tiring it is for Russ to work full-time and be my carer too, as well as dealing with the rollercoaster ride that is my cancer journey. Some days he is surprisingly strong, but other days he struggles and looks exhausting... it is hard seeing how taxing all this is on him, so I just really wanted him to know how loved and special he is.

I am so grateful to Russ and for everything he does, he is one amazing guy!


Russ is known for his background antics in our photos - here he is licking my hair, don't ask!

Thank you:

I just wanted to say a special thank you again to everyone who made this happen and a special thanks to Kylie from Kidgredients for all the time and love she put into the slideshow for us. Kylie has some delicious recipes on her site, especially for kids and lunchbox foods, even delicious snacks that are easy to make. Be sure to pop by her site - you won't be disapointed!

Kylie, thank you again for this special memory Russ will never forget, and most of all thank you for being one heck of a wonderful woman and friend. You helped me to create something truly magical. 

 

Posted by: Talya AT 08:18 pm   |  Permalink   |  2 Comments  |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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