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!
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:
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:
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.
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.
Monday, January 08 2018
I know there has been a lot of posts around social media this past week (well, more so New Years Day) about the whole 'non resolutions' or how people were dropping the making resolutions as they either never stick or it makes people feel overwhelmed and anxious. This has something to do with the pressure placed on how it is a "new year new me" and that you internalise this pressure for the need to change yourself.... so it gets pretty depressing when it is the end of the year and you are yet to do one thing you set out to do.
Well, I know for me I get horribly depressed each December when I realise that none of my unrealistic/unattainable goals weren't met, and I feel like a bit of a failure and get pretty hard on myself.
So this year I plan on doing something a little different... I give up on each year setting myself the task of finding that million dollar idea (maybe if I don't try so hard I will find it), or to feel bad that I didn't finish my uni degree, or that I haven't got a hot bod (#sorrynotsorry).
I am choosing 18 ACHIEVABLE things I want to accomplish in 2018.
#1. Self Care:
I purchased the ebook version off Amazon and by a quarter of the way into the book I was astonished, I could have sworn it was me who had written this book as it was just so incredibly relatable. It definitely has me hooked!
Self care isn't necassarily just candle lit bubble baths with a glass of bubbly and reading a book, it can be a whole range of things. It could be doing things that make you happy, here is a post I wrote back in 2016 about 5 things to do each to add happiness or meaning to my day. You could choose to meditate or do yoga, could do a course or learn a new skill, could do something on your bucket list, could volunteer, do a random act of kindness, buy yourself flowers, get pampered, get your hair done or watch a movie or show.
#2. To read more:
So I have been so focussed on micro managing every part of my day/life that I would say I was too busy to read or I didn't have the time, but I vow this year to make time to read more. Whether it be the ebooks I have stored on my ipad or tablet, or going old fashioned and reading the amassed pile of books I have acculumated over the past few years. So starting with reading "The Self-care project" I am setting myself the challenge of either reading 1 book a month or 18 books this year.
Let's do this!
#3. To say No more:
In saying this though, there will be times where I say no simply because I am physically unable to do something due to pain or health, so I am sure this will cause more stress as some might think my health is an excuse? As I said, a challenge... but I am not putting my health at risk for a ridiculous deadline anymore.
#4. Reducing waste:
One of my favourite quotes from Gandhi is "Be the change you wish to see in the world". Change is hard and takes patience and a lot of baby steps, but you can't expect the world to be better or changed if you don't play a part yourself.
So I have ordered some produce reusable bags from my Sister-In Law's business which will mean no longer using single use plastic bags for produce. We also plan on using environment friendly bags in replace of plastic bags and I hope to get a compost happening too.... as I said it will be hard, but I do hope it will help the environment.
I feel guilty sometimes being an ostomate, because my base plate and bags aren't biodegradable (that I'm aware of) so even if I used bio degradable garbage bags and buried it, it still wouldn't break down and would be just the same as putting it in the bin. So I hate having a bag that leaks multiple times a day as it means a lot of ostomy products are used and thrown away, and I feel guilty that I am impacting the environment.... but it can't be helped.
So if I can make changes in other areas of my life, it hopefully makes up for it somehow?
#5. See the snow:
I had always hoped to get to the US or Canada and see this in person myself, but while that dream won't happen, I am happy to settle for somewhere in Australia where it snows, there is a romantic log cabin with a fire and somewhere Russ and I can unwind and relax.
I have heard him say almost daily the past month that he truly wants to experience this with me. Watching all the romantic Christmas movies helped I think, but it has had him rather upset realising too all the things he wants to experience with me but not sure if we will.
It is hard sometimes trying to squeeze 80 years of experiences into as much time as we have left.
If you have suggestions, do let me know, I can't fly so anywhere that is easily train accessible or short driving trips in NSW will be best.
#6. Learn something new:
I am doing a course right now cert 4 in screen and media and learning at the moment how to write children's stories.
#7. Write that damn book:
#8. Write a blog post a week:
#9. Write a journal:
All of these writing cues would be kind of life self care I guess, since it is cathartic and all.
#10. Regularly meet with a counsellor:
I guess this would come under self care and taking time for my needs too.
#11. Go Swimming:
Don't worry I plan on being sun safe and have my SPF50+ rashie from SunSoaked and my Sunbella parasol to help me too.
#12. Go Glamping:
#13. Have a holiday:
#14. Explore the Coast:
We still have bucket listing adventures for Brisbane, Sydney, Newcastle and beyond. I am just wanting to see so much!
I am just really hoping to see/experience new places this year.
#15. Renew our vows:
I had always said when we get to 10 years we would renew somewhere fun and overseas, but not sure that dream of international travel is managable or if I could make it to our 10 wedding anniversary.
#16. Get back on our feet financially:
We tried to apply to several other banks who all declined us because we didn't have savings (everything went into our house) and so we had hoped to even consolidate everything into one loan to make repayments easier and more affordable but were declined. Despite having equity in the property. It is hard to have savings when every cent is going into the house, our debt, living expenses, medical expenses and the list goes on.
I am just hoping this year we have better luck and if we can't at least consolidate everything that we can find a new bank for our home loan. I just want out of their grip, just like Britain wanted out of the EU. If we can get a new bank and debt consolidation everything will be more easier, we might even afford a mini holiday.
Part of this is finding a new bank too. I just want and need everything to be tidied up and managable ready for Russ to take over when I die.
#17. See a waterfall:
#18. Try to get my pain under control:
I spent the better part of last year struggling with my pain. I know my doctors are doing their best to manage it, but it really is hard and affects so many aspects of my life. It is debilitating, exhausting, it makes me frustrated and irritable, it messes with my mental health and it just sucks. It is hard to manage getting out of bed most days let alone manage an hour of getting out and about. I missed out on a lot last year and I don't want to miss out on life this year because of pain.
☟ ☟ ☟ ☟ ☟ ☟ ☟ ☟
I know it was a long post, but I thought 18 made sense since you know it is 2018 and all. I feel good that it is all written down but now overwhelmed, which is ironic, but I will do seperate posts throughout the year both here and on social media documenting how I go... it means I can hold myself accountable now since I have told you all about this.
My list honestly could have continued such as "yet to finish unpacking", "yet to manage that room makeover" and so on. I just decided to choose things that will either improve my life, bring me joy or are somewhat achievable for this year.... and if I win the lotto that is a bonus!
Russ asked me what I have been writing/working on the past couple of days, he then rattled off a list of 18 things he *felt* I should do instead which all involved him and were very much Russ focussed or specific. I laughed and said, your list kind of defeats the purpose of several things on my list like taking time for me and saying no and putting me first.
To be fair, his list was most of what I do anyway which was:
Here's hoping 2018 is a good year and that I can do some of these things if not all. Despite spending over 80% of the year in bed last year, the times I did bucket list stuff or was out and about are some of my most cherished memories looking back, those memories I remember on my bad days.
I wish you a HNY2018 and wishing you health, love, success, happiness and clarity this year.
Thank you for reading, feel free to share something you hope to do this year in the comments below:
Saturday, November 11 2017
CW: This post talks infertility, miscarriage and other heartbreak caused by having a faulty body
If you follow me on social media, no doubt you have met the gorgeous little furball Dusty who is a ragdoll x blue russian kitten. He has the most gorgeous blue eyes and has made every day over the past year filled with love, fun, adventure and cuddles.
Wait, 12 months on, is he still a kitten or is he a cat? I hate to think of him as a grown cat as he is wholeheartedly my little furbaby. I still like to think of him as this tiny little ball of fluff that relied on me.
Dusty has filled a void that I have had for far too long, and I know Russ will say the same.
Dusty is our baby, he is our child we never had and he is a spoiled little shit. I say that with lots of love. He has destroyed everything because he can, he makes a habit out of biting my ankles or backs of my knees, and he just throws tantrums if he doesn't get what he wants.... I love him, I do, but some days he can be a handful.
However, I know the huge benefit Dusty has had on my wellbeing, I believe he is a major part of why I am still here, he has filled our home and hearts with so much love, laughter, joy, and I know the last 12 months would have been a lot more lonlier and isolating if it weren't for him.
Our Hopes for a family:
Russ and I have always wanted children, even before our first date 8 years ago he said "I am looking to settle down, to have a family, to find the one person to spend the rest of my life with". At the time the then 18-year-old me was like "hmm ok we'll see" it wasn't in my life's plan to have kids until I was at least 24, married and had a career and house. But then once we got to know each other, he supported me through several brain surgeries a month after we started dating, I knew there was something special about Russ and when he proposed a couple of months later I said yes. I was excited for what the future had in store for us, it was my chance for a new beginning and hopefully a family.
We had one misscarriage in February Valentine's Day (was the day of our engagement party) and it was the only successful attempt. We were shattered. We were hopeful that we would be a family one day.
Later that year we got married (July), then sometime after the wedding we learned that my dad was terminal with bowel cancer at 39 years of age and that it were a rare hereditary form that it was high probability that I too shared this gene.
My doctors forewarned that I were likely to have cancer myself but wouldn't be until around 30 (boy they were wrong) and suggested we try and plan for a family right away and live our lives before surgery and cancer took over.
Our hopes and dreams as newlyweds of having the family we longed for were shattered now that we were gambling the life of a future child in our hands. We started meeting with geneticists, specialists, gynecologists, fertility specialists and counsellors to fully go over our options.
In 2012, 2 years after my diagnosis of FAP, I had investigative surgery of my pelvic area including my bladder and bowel.
I woke from surgery being told that I was in a medically induced menopause and that on top of the FAP I had severe stage 4 endometriosis and the chances of having a child with IVF was less than 1% and would be too costly.
So it was then that we put the plans of us having a family of our own to rest, we then said we would foster, adopt or get a kitten as Russ isn't a dog person.
In 2013, in the months that I were free of bowel cancer and rejoicing for my new lease on life after having surgery to have an ileostomy, we started training to be foster parents. In 2014, we learned of the new tumour where the bowel used to be and was told that I now couldn't be a foster parent until I had been 5 years cancer free and had a stable life - bringing a kid into a house with a sick parent could be traumatising for the child - so we said we would wait for that day to come.
Which brings us to 12 months ago:
We had moved into our own home, now as home owners we could have a kitten. We were scrolling through facebook one day when a lady posted a photo of Dusty and said he was available in 2 months time (late october). I quickly messaged expecting him to have been sold already, but to my surprise he hadn't found his forever home yet. Later that day Russ dropped by on his way home from work and paid for him and had his first cuddles with him.
Russ was completley smitten and in love.
It filled my heart with so much joy seeing the bond they've shared over the past year.
Dusty cuddles up to me a lot through the day and the night, but as soon as Russell's alarm goes off he shoots off the bed and meows all excitedly as he knows he is about to be fed. When Russ comes home Dusty runs to the door to greet him, Russ will pick him up for cuddles and often rolls around on the floor playing with him.
It is a comfort some days knowing that Russ will not come home to an empty house once I've died, that he will always come home to seomone who loves him and needs him and I think (hope) that Dusty will be a great comfort for Russ.
I know a cat isn't a child, but Dusty is our little baby. He is funny, mischeivious, smart, playful and loving.
Dusty is so clever! He plays fetch. He learned when he was really little that I spend a lot of time in bed when I have bad days, so he learned if he wanted someone to play with that he needs to play on the bed as I am laying down, and it has worked really well.
He at times has sensed when I am upset or anxious, he often checks on me during my bad days, he also sometimes wakes me up by poking me in the face with his fish-on-a-stick-toy, but he has made me feel full and loved. He is so protective of me it is adorable.
I now feel like we are a family and we have Dusty to thank for completing our lives.
I know I post a lot of Dusty posts on social media, but most days he is the best part of my day and I want to share that with the world.
I always had been told that pets are theraputic, but until this past year I wasn't a believer. I get asked why I haven't died yet and what has changed in the past year and my answer is Dusty.
Sunday, September 04 2016
I often wonder if my dad's bowel cancer had of been detected early on, would he still be here today? I believe that he could have been, especially if it hadn't metastised yet.
I also wonder, would he have needed a stoma and if he would have been okay with needing one if it meant he would still be alive.
Then I imagine my dad and I twinning at being stoma bag buddies, and sharing a humour about life with a stoma that only we would understand and appreciate.
My dad was one tough bloke, he was WAY tougher and stronger than I could ever be. He hardly complained about being in pain, and although you could see in his eyes he was exhausted, he would still make sure that he was there for us kids.
But, I know how hard living with a stoma can be, especially in those first few months.
I know if my dad were given the choice of life with a stoma or death he would have opted for living, he would have done anything for his kids. He would have made jokes about having a leak in public, and gone "well, fuck. Shit happens aye".
He probably would have even said something like "don't scare me like that... I shit easily".
But something totally corny and dad jokey would have been "talk about de ja poo... I've heard this crap before"... or "Did you know that diarrhea is genetic... because it is running in my jeans".
Dad was a true comedian and could turn any situation into one that could make you laugh... I think he would have continued that humour and his positive outlook through having a stoma too.
I like to think that is where my strength, ostomism (optimism with a stoma) and humour come from.... and in a way I feel that he helps me to get through each day by asking myself "what would dad have done/said".
Even after his death my dad continues to inspire, motivate and give me the strength I need to get through my day.
Happy Father's Day dad.
Tell me, is there something that you inherited or share an interest with your dad?
I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel appreciated too.
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!
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.
Monday, November 16 2015
Hi and welcome to Chemo Diaries: My experience, which will be a monthly series of posts written like a diary about my experience as I undergo chemo. This is the first month post and is also for the month of October, 2015.
Thankfully there is heaps of information out there to help understand the type of cancer treatment you need and how it will effect you. I have found CanTeen have some great resources for helping me to understand what to expect from my cancer journey (even booklets on fertility after treatment). Other great places of information I have found are from the Cancer Council as well as the chemo education sessions I attended at my local cancer centre.
As I read in the Canteen booklet "Your guide to dealing with cancer ages 16-24", chemotherapy (chemo) is one of the more commonly used methods to treat cancer and it works by using drugs called cytotoxics to kill or slow the growth of cancer cells. As explained in the booklet (and from my own experience) chemo also kills your good cells too, making you feel very sick, fatigued, and also why you lose your hair (I am yet to experience hair loss). I also experienced really painful mouth ulcers recently (was so bad I couldn't eat, read more about that below).
Initially I was planned on having monthly doses of Caelyx but after a severe (almost-died-reaction) to it my oncologists decided on weekly doses of Methotrexate and Vinblastine combination to try and shrink these tumours, and as my oncologist explained "to help give me relief to enjoy each day".
I didn't go into chemo with the expectation that one day I will be cured and tumour free, I know that isn't my reality and I don't want to have unrealistic expectations. But I just want my tumours to shrink enough so I can FINALLY be pain free and enjoy what is left of my short life. I have so much I want to still do (read about my happy list here) and I hope to be well enough one day to travel.
My experience so far:
This concludes my first month of chemo experiences ranging from my portacath surgery to starting two different chemo regimes and as my husband said to me recently, "I know it is horrible right now, but the sad thing is you will get used to feeling like shit... just imagine when chemo is all over and you will look back and think 'It is good not to feel that crappy'. If anyone can do this, you can".
I love that he has so much faith in my strength, although I constantly wonder and feel like I am not strong enough to do this.... my husband is like my own personal cheerleader! I don't think I could have done this without his support...
One month down, just 11 more to go!
Tuesday, November 10 2015
One thing that I am learning more and more each day as I progress through my chemo regime is just how much fatigue I have and how little energy. I am realising the need and importance for energy conservation and working on improving this for myself and hoping to share a blog post to help others too, afterall being chronically sick is exhausting.
Another thing that is exhausting is dealing with the emotional side of living daily with a chronic and terminal illness.
I realised yesterday, that in order to help conserve my energy and to prevent just how exhausted I am feeling today, that I should try and keep my mental breakdowns and panic attacks to a mininum or at least save it for the times that need it most, or best yet to wait until you have all the facts and a confirmation from your primary care physicians before freaking out.
This is what happened yesterday and the lead up to it.
Monday 09.11.15 1PM AEST:
I left there trying to hold it together as I was hoping it was a fluid cavity as that could be fixed with a surgery and drain, but a new tumour I couldn't handle.
Monday 09.11.15 3PM:
I felt like the biggest dickhead ever and felt horrible for causing my family further heartache, but my heart was broken as I was told the wrong misinformed information and I hadn't yet seen my primary doctors to have it all confirmed.
To my followers that were supporting me yesterday during my freakout, I am so appreciative of your help and sorry for an undue stresses caused for worrying about me... It was not a cry for attention I legit thought I was on the brink of dying (so scary).
Much love to you all x
Tell me in the comments below, a time where you freaked out before knowing all the facts
Saturday, September 26 2015
NB: This post contains raw emotions
I am sitting here writing this approximately 3 days out of having my first round of chemo, and if I said I wasn't shitting myself, I would be lying and quite possibly with my pants alight.
You see, even though I have known for a while now (little over 3 weeks) that I would be needing chemo I thought that I was okay with it and had accepted it, and that I was ready, but the more meetings I have with my oncologists and chemo nurses and waiting for vascular surgeon to put in my portacath and the more involved this process gets, the more overwhelmed I get.
It all started earlier this month, I went to Sydney and met with my oncologist to review my beastly desmoid tumours, and it was concluded that it was time to try chemotherapy to shrink these tumours after all other options had been exhausted.
My oncologist told me I would be needing to have a drug called Caelyx, which is predominately used to treat breast cancers but has had some clinical trials where it has been effective in the fight against desmoid tumours.
So I left the Sydney appointment with the relief of knowing that I can have chemo back home and would need to organise a local oncologist, which I first met with on the 17th of September. In this meeting I was blown away with how thorough he was and he knew EVERYTHING about my history and I was really impressed with how much research he had done into my rare tumours and disease.
It turns out that the chemo that I NEED to save my life comes at a price. You see, the drug currently isn't on the PBS (Pharmaceutical Benefits Scheme) and is $6,000 AUD per dose of chemo, meaning I would be needing to come up with $36k, which I don't have.
So I called my Private Health Insurer, who told me that "we only cover chemotheraphy if done as an inpatient and if it is on the PBS, unfortunately we can't cover your chemo". I was so upset and started considering what my options were.
My oncologist presented three options to me, these were:
By this point it was a Thursday and I was told that I had until Monday to make my decision.
After talking at length with my husband and family, and writing a pro's and con's list I decided that we will go with option 3.
I got a phone call on Tuesday morning from my oncologist to say that the drug company has responded and approved 3 initial treatments and pre-approved a further 3 more, so 6 treatments in total!
I was so relieved I was crying and calling my husband and family to tell them the great news, I felt like I had won the lottery! Honestly!
Because of how rare my disease and tumours are, if this drug works for me then it might help other people with the same disease and options, and might provide some hope to those who feel all has been lost.
While I am so appreciative for the chemo being supplied, I am trying not to get my hopes up ..... if it doesn't work I really don't know how I could cope if I felt that all hope is lost, as it stands I am petrified of my future and what my life will entail for the next 12 months, and I am just praying that this works.
My husband and I have attended chemo education sessions, so we know what to expect and what is involved, just being only a few days out of starting chemo I am shitting myself, and finding myself feeling rather anxious, angry and scared.
... If I click my heals together 3 times and imagine a secluded beach in paradise, with Ryan Gosling serving me cocktails while topless, will I be transported there?
...CLICK.... ......CLICK....... ......CLICK......
Maybe it only works if you're wearing glittery red heels?
P.S I need your help! While my chemo is being generously supplied, I am struggling financially with all of the other medical costs (scans, medications, specialist consults) as well as getting to and from chemo and trying to manage life in general, things are a bit tight..
Friday, September 04 2015
Recently, I was filling in one of those online question surveys that was for a cosmetic surgery company (I really wanted to win the cash prize) and while there were the usual questions about if you have considered cosmetic surgery before, there were also questions about your self esteem and self worth.
One question that stumped me, was "if there was one thing you could change about yourself, what would it be and why?"... and the answer may surprise you, I know it surprised me!
I have never been someone who has considered undergoing cosmetic surgery in order to change how I feel about myself, and while I don't judge those who do, I just feel if you're unhappy with who you are now that it might not necessarily change after you've spent thousands on surgeries... it might make you feel worse if it didn't have the desired effect.
But mostly, I have already had so many surgeries and medical procedures because of the cards I've been dealt with that personally, I just don't want to put my body under the knife if it isn't needed. I have wanted a boob reduction, but that is mostly because my boobs are like a double J or something (no exaggeration) and it gets harder and harder to find bras and is so uncomfortable... but that isn't the one thing I would change.
I gave this answer some serious thought, and I thought about all of my physical "flaws" and imperfections and which one I would change.. I thought about my boobs and while they are huge and heavy they keep me warm (I do get cold very easily)... I thought about my eyes which are so wonky that my husband never knows if I am looking at him or around him (and I have to tilt my head slightly in pictures so you don't notice one eye is bigger than the other)...
My endometriosis crossed my mind, and I felt the all too familiar pains that it (like my FAP) has taken a lot from me... I thought about if I didn't have my endometriosis if I would have had a family by now and if I would make a good mum, to imagining a life where each month I'm not crippled with pain from the endo... and I even imagined what it would be like to have sex and ACTUALLY enjoy it... as opposed to how it has been for me the entire time I have been sexually active.. it not only is extremely painful during intercourse but afterwards it feels like there are thousands of knives stabbing at my insides (so you can imagine how hard it can be for your husband to know that while it brings him pleasure it is torture for you to endure... and then he can't help but feel bad about it... then you feel bad for making him feel bad... it is a horrible cycle).
OR is the one thing I would change about myself, my desmoid tumours? I am in constant pain everyday and finding it harder to enjoy things as I am just so exhausted from being in pain and worrying about my tumours. I am scared of what will happen if these tumours don't respond to chemotherapy this month and what this means for me... My kidneys are starting to go into renal damage, my tumours are pressing on my spine/stomach and sciatic nerve, and then there are two tumours which are close to strangling my small bowel and I haven't any large bowel (if my small bowel dies I might too).
OR would I want to change my weight because apparantly if you're overweight you can't be happy within yourself... while I am trying to lose weight it wouldn't be the one thing I changed about myself.
I thought about all of my scars that I have from my various surgeries and how they make me feel... and they mostly make me feel empowered like I am a tough bitch and it is almost somehow like proof of that time that I had to face an adversity but before I could get through it I had to first climb the huge mountain that was blocking me from it.... each of my scar bears a story to be told... and some of my scars show a sign of the battle faced.
Like the scar under my chin, which I got on the last day of Kindergarten in 1996 when I was so excited for losing my first tooth the night before. I had gotten $10 (the tooth fairy was rather generous) and I was skipping along not noticing the water overflow from the bubblers.. when... spalt! My head greeted the concrete and was taken to hospital to get stictches.. I was such a brave girl I got 6 stitches, a story to tell ANNND I got to choose a toy as a 'what a brave girl you were' gift...
Or the scar that runs from just under my breasts to just above my hoo-ha.. a daily reminder of just how lucky I was to have my bowel cancer detected early and underwent a total colectomy.. a scar that while it is huge and bumpy (and growing tumours attached to it) that it is a HUGE part of who I have become and a testament of how far I have come in the last 2 years...
...Which brings me to my ileostomy.
While some might assume that I might loathe my ileostomy everyday (albeit some days it gives me the shits), my ileostomy is something I can't imagine living without, and am so appreciative for it stands for. Prior to my total colectomy, trips to the toilet were agonising and often I spent hours on end just sitting in the bathroom in a lot of pain and often house bound... leaving the house meant that my trips needed to be carefully planned around where the nearest toilets would be, or avoiding eating foods for the horrific, painful and explosive events that were to follow.
The thing I LOVE the most about my ileostomy is that it had given me my life back and a quality of life I haven't had in about 10 years or so.. it meant I could now eat and enjoy foods without being in agony.. it also meant reducing one of my many cancer risks.
So if my ileostomy ISN'T the one thing I would change about myself, then what must it be?
Simply put, I would like to change the expectations, standard and pressures I put on myself because I need to remember that I'm not a superhero and I AM doing the best that I can... I need to give myself a break and be kinder to myself.
Something to remember...
If you could change one thing about yourself, what would it be?
Sunday, August 30 2015
There is something about being chronically sick and told you're essentially "a ticking time bomb" that really helps to put things into perspective.
When I was first diagnosed with FAP in 2010 (I was 19), I was told that I wouldn't be at risk of bowel cancer until I was 30. It made me realise just how much I wanted to do and achieve while I still could.
Then in late 2012, I found out the polyps in my bowel were turning cancerous and that I only had a matter of months to act and have all of my bowel removed. You would think that this would cause more of an alarm and prompt me to want to do a lot more with my life, but as the bowel cancer risk was removed, I naively thought that my risk of cancer would be removed and I could get on with my life..
But boy was I wrong.... My cancer journey didn't end there. In fact, I was diagnosed with thyroid cancer earlier this year too which thankfully was successfully removed in April while it was still in the stage I phase, remained contained within my thyroid meaning it hadn't reached nearby neck tissues.
It wasn't until a year ago that I had this drive and motivation to want to do everything I have ever only imagined in day dreams, was re-ignited and has been a continual driving force (and distraction this past year). It made me realise that while I was content with my life and my accomplishments so far, that I didn't feel entirely happy, and I knew that there was more I wanted to do and see.
So I decided I would write a happy list, as opposed to a bucket list for one of two reasons:
What was the changing point for me, was when I was in hospital for pancreatitis when the doctors did a CT scan that revealed there was this new and rather large tumour and suspected it was a desmoid tumour. These types of tumours are really rare, but they can also be rather deadly and life threatening and these 'aggressive fibromatosis' can cause death.
To put it bluntly, when I was first diagnosed with FAP my doctors said that they "hope that you don't develop desmoid tumours... if it isn't the cancer from the FAP that kills you the desmoid tumours will".
So while I am only 24, I have come to terms with the fact that this condition will kill me, I just don't know when. Some doctors mentioned up to a year if the tumours continue to grow at the rate they currently are (thankfully last lost of treatment is keeping them at bay and no new growth) but others have said 5-6 years.
#2. Sense of accomplishment and fulfilment (purpose/direction)
#3. Is more empowering and motivating
#4. Offers inclusion of others
#5. Works as a distraction
Things on my happy list include (in no particular order):
I know some of these may sound over the top, and I admit they are but if you're going to dream you might as well dream big as well as being realistic... now if I could just find the next multimillion dollar idea, I will be well on my way to taking over the world (not quite literal).
So tell me, do you have a happy list and what is one thing you want to mark off your list? Feel free to comment below.
Saturday, July 25 2015
I have been thinking a lot lately about my life and especially my health and what I have gone through and learnt. One thing that keeps popping into my mind is just how much being sick affects every aspect of my life!
When you think about it, being chronically sick interferes with your physical, mental, social, spiritual and financial health. I know my bank account has taken a massive hit since I had to stop working almost 3 years ago and with the never ending medical expenses (scans, blood tests, doctors fees, surgical fees, hospital excess fees). I also know people stop inviting me places because I often cancel last minute because I am stuck in bed, in pain and unable to drive (and have no one to drive for me).
I know a lot of people only associate health with just being physical, but I wanted to bring the attention to our health being holistic and incorporates the several key aspects of our life.
There are so many ways you can perform selfless acts, and it will make you feel better about yourself by bringing jo and happiness to others.
P.S if you have any suggestions or ways that you improve your health through small changes, please leave a comment and share ideas for others reading.
Sunday, April 12 2015
NB: This is a sponsored post
When I was 19 and was newly wed (literally a month before) I had my first consult with my colorectal specialist as I had just been diagnosed with Familial Adenomatous Polyposis (FAP for short). FAP is a rare inherited disorder which occurs because of a mutation of the APC gene. For those (like myself) that aren't experts on human anatomy and physiology, the APC gene (Adenomatous Polyposis Coli gene) which is known as a tumour suppression gene, is responsible for suppressing tumours in the colon and digestive tracts. So when you have a mutation of this gene, it in turn significantly increases your risk of not only colorectal cancers but other cancers too.
I only found out I had this disease as my dad had been diagnosed with terminal bowel cancer which was caused from the FAP.
So it was in this initial consult with my amazing colorectal surgeon that he asked me if I had Private Health Insurance, and when I replied that I didn't he said to me "First thing to do when you leave here is to get yourself covered. You're going to need it in the years ahead".
So I left his office and started researching different providers and the main thing I was looking for in my cover (at the time) was to be covered for colonoscopies and gastroscopies and also to find which one I had the shortest wait on to claim for a pre-existing condition, which was 12 months (some are 18-24 months).
I became overwhelmed with my research and really wished I had of gone through a company that specialises in health insurance comparisons, such as Health Insurance Comparison, as it would have made things so much easier. Instead, I went old school and called every provider that came highly recommended or I had heard good things about. I ended up going with NIB, as they were the best fit for me and my situation and have had my cover with them for 5 years now (but still good to compare what all the providers can offer you).
There are different levels of cover to suit each individual's health and situation which fall under Hospital and/or Extras. Hospital cover, refers to the cover needed for hospital admissions or proceedures (there are some exclusions which you will need to find out before getting a policy, for example I am not covered for pregnancy or IVF related, but covered for most proceedures). Extras cover, refers to things that aren't covered by Medicare and includes things like optical, dental, chiro, physio, psycology, weight loss programs and some non PBS medications (there are more inclusions depending on the level of cover you need).
One thing that I didn't realise before I was 19, was just how beneficial having health insurance could be. I always thought that if I had just a medicare card that it was enough and to be honest I thought it was an expense I didn't need.
"But once I got the Private Health Insurance cover and have had it now for 5 years, I have learnt just how wrong I was when I thought I didn't need it!"
Here are 12 ways that having Private Health Insurance (PHI) has benefited me over the last 5 years..
#1: I get to choose who my treating Doctor is....
#2: By using my PHI in a Public Hospital, I am actually helping the hospital!
n.b: when you are admitted as a Private Patient in a Public hospital, usually you don't need to pay any out of pocket expenses such as your excess, but it is always important to double check with your hospital and policy provider.
#3: In a Public Hospital, you will get some great freebies if you use your PHI!
#4: You can sometimes get your own room.
#5: When you need a surgery, you don't have to worry about long Public wait lists.
#6: You can sometimes get your glasses for FREE*
#7: Speaking of extra's cover, how painful is a trip to the dentist on your wallet?
#8: A ride in the Ambulance can become rather costly, but if you have PHI it can be FREE to you.
#9: Staying in a Private Hospital can be quite expensive if you aren't covered.
#10: Sometimes we need a little EXTRA help...
#11: You could be paying LESS in Taxes!
#12: If you take your policy out before you turn 30, you'll avoid paying the LIFETIME LOADING FEE!
My advice to you....
Thanks to Health Insurance Comparison, you could win a year's worth of PHI! Click the ad below to find out more!
I hope that this is a helpful guide into how beneficial having PHI is for me, and I hope this helps you to know a bit more about how it can help you too!
DISCLAIMER: While this post was written by myself about my experience in how beneficial PHI is to me and all views expressed in this article are mine, this post is not affiliated with specsavers or NIB but was written for Health Insurance Comparison.
Tuesday, March 03 2015
Back on the 3rd of Feb, I had to head back down to Sydney for my next PET Scan (click here to read what to expect when you need a PET scan) and the scan showed that there was activity on my thyroid and in my breast/armpit (which is new) but it also showed there were new tumours just under my scar from my ileostomy, and some under my ileostomy as well as the larger mass was now compressing my Kidney.
My doctor saw me after my scan, had said he wanted me back in Sydney on the 9th to be admitted into hospital so they could undergo further tests and start treatment for whatever these tumours were (they were still speculating about what it could be). At this consult I was only told about the breast and the tumour blocking my kidney (I didn't know of the additional stomach tumours or activity in my thyroid).
So first came a team of Endocrinologists, who wanted to chat about my history and asked me about my thyroid and if I had noticed any changes. I mentioned to them that my neck at times feels a bit bumpy and sometimes it feels like I have trouble swallowing or that I can feel like something is pressing on my neck and I am choking.
I told them about my entire medical history and weight issues, and how I have seen some endocrinologists before who seemed more interested in taking my money then actually helping figure out what was wrong.
They told me that my thyroid showed up on my PET scan as an area of interest and that I would be going the following day for an ultrasound of my neck.
I had the ultrasound, and a couple more doctors came in and then they left and were chatting, and came back and told me that they can see a lot of nodules on my thyroid and that there are some enlarged lymph nodes. A doctor confirmed later that day that I have a multi nodular goitre.
They told me "it is probably nothing to worry about but we will do a biopsy to be safe".
The biopsy was the following day and was done in a special room where there was a CT, ultrasound machines as well as a lot of surgical gear. I had a FNA (fine needle aspiration biopsy).
I had to lay flat on the bed with my head tilted back so my entire neck was exposed. The Doctors then re-did an ultrasound to confirm that the lymph nodes and nodules they saw were the ones they needed to biopsy (there was 2 of main concern). They confirmed the lymph nodes were the correct ones and the biopsy proceedure started.
As they were biopsying each side I had to turn my head as far as I could.
They then applied the local anesthetic, which hurt a lot. It is a pretty sensitive and uncomfortable area.
Then they did the biopsies. They had to do several attempts at each of the two lymph nodes to make sure they had the best samples. There was also a cytologist there to confirm the quality of the samples under microscope.
Although they had numbed the area it still hurt and also was uncomfortable. Everytime they penetrated the lymph node and jiggled the needle about it was sending a shooting pain up my jaw, into my ear and into my head. It was like it was hitting a nerve. It was horrible. But as soon as they removed the needle, this went away.
After the Biopsy
After the biopsy was done, I was brought back up to my room and as my neck was so sore I asked for some ice packs to place on my neck. During the night my neck got a bit swollen and irritated, so I had some panadol and applied more ice.
My neck only hurt for a day or two afterwards and I just applied ice the entire time. The ice helped with inflammation and also to relieve the area of pain.
I felt as though I had been attacked by a lymph node sucking vampire!
The Results and What's Next
My results were back the following day (I just had gotten back from my breast biopsy) and was told that it was positive for Papillary Thyroid Cancer related to my FAP and I was just in so much shock I couldn't stop crying.
The doctor sat with me as I called my husband to tell him the news, and she told me that this is the best cancer to have out of all of them it is the most curable when caught early, and she started telling me about the surgery and what it will involve.
I know I shouldn't have been so shocked as when I was diagnosed back in 2010 with FAP I was told then that in a timeline of cancers it would go colorectal and then some people get thyroid, pancreatic and so on. I just always hoped that I was one of the luckier ones with FAP that just needed the total colectomy and that was it.
I am due to have my entire thyroid removed on the 30th of April, then I come back for the radiation weekend about 4-6 weeks after to kill any remaining thyroid tissue.
Stay tuned for what to expect with a breast biopsy and also a stomach biopsy.
I have been given some really useful guides by my doctors about the upcoming surgery and thyroid cancer which most can be found online from the cancer council's website, Another resource I read was or a really informative guide I found useful from Genzyme Australiasia.
Wednesday, January 21 2015
I seem to be driving my husband insane lately...... well more insane then usual.
Ever since I had my bowel removed and no longer frequent the toilet hundreds of times a day (that is no exaggeration by the way), that I have kind of become a self titled toilet creeper.
Now I don't want this title by any means, but now that I don't spend so much time in the bathroom and more so on the toilet, I am really starting to notice how long others spend on the toilet.
Which my husband says is driving him insane.
Reason being, is I am a strong advocate for bowel cancer awareness, bowel cancer screening but importantly that bowel cancer can happen to young people not just in older people (people over 50).
My husband, is having a 'half way to retirement' party in March for his birthday (my joke that he is old and turning 35... well there is an 11 year age gap afterall..), so I have become a bit paranoid lately that he spends too much time on the toilet and he needs to get checked.
Do you know how frustrating it is when you're waiting to go out to dinner, waiting to serve up dinner, or waiting to do something and someone is in the bathroom for an hour holding you up?
Well, that is how I feel and felt my concern was warranted. Rewind to 2009-2013, that was me!
Turns out he is just addicted to playing games on his iPhone, and as he works 8 hours a day it is the first chance he can play all day. Honestly, his routine is walk in the door, say hello, go to the toilet, then have a shower.
So while I felt my concern is warranted, and turned into a toilet creeper, I think my husband is okay.
But it doesn't remove my anxiety...
I think as long as I am alive I will be advocating that if things change and are not 'normal' bowel movements, that you should see your doctor. As early intervention and diagnosis is key for beating this dreaded and horrible disease.
Well I guess being a toilet creeper isn't so bad, as it might just save his life one day!
p.s Lesson for all those men (or women) who spend time on the toilet addicted to playing their games on their phones... your partner might just think you need a colonoscopy.
Wednesday, December 17 2014
We all know that one person in the family that no matter where you go, they always forget to pack something!
In my family I am sure they all would say that person is me... I swear sometimes I would forget my head if it wasn't screwed on (lol).
I went away last weekend and in a rush packed my overnight bags and restocked my stoma supplies.....
I was in a rush and was rather fllustered and thankfully didn't have a bag leak as I just realised I grabbed the entirely wrong stoma bags!
So it got me thinking how many other people with Stomas are finding themselves stressed, flustered and overwhelmed in time for Xmas, and especially those who are heading away for the holiday season.. so I decided I would create a check list printable for you to download, print off and pack your bags.
Just like Santa, we need to make a list and check it twice!
I know for me personally, I tend to only get bag leaks when I am away from home and become stressed. This is my first Xmas with a stoma that I will be going away, and as I won't be just able to zip back home to grab a supply if I do get a bag leak I need to make sure I am prepared first!
If you think I have forgotten or left anything off the list please let me know!
Have a lovely Christmas, and don't forget to enjoy and cherish those loved ones in your life.
Sunday, October 26 2014
Last week I found out that Feeling Ostomistic had been chosen as a finalist in the 2014 BUPA blog awards under the social good section.
I have had a lot of people ask IF I won what would I plan to use the money for, or more what would I do with it.
I have plans to further my studies (currently studying a Diploma in Community Services) but I want to go on to study a Diploma in Counselling.
I want to further the support my blog offers to include niche counselling of young people living with an Ostomy or associated health issues.
I know first hand how there can be days where living with a stoma can be quite overwhelming but more so with the other health issues that goes with it.
I want to offer counselling from a supportive place that when I say "I understand", I really mean that I understand!
There is nothing more frustrating then trying to speak to a counsellor and get support and when you're talking to them they just have a look on their faces like they have no idea how it feels or how you feel as they haven't had that experience.
And that is where I want to be the point of difference!
I want you to feel supported, understood but I want you to feel empowered that none of this defines who you are.
But importantly I don't want you to feel alone!
So winning this award would mean a lot of support and awareness to those who need it most.
Please help me make this vision a reality and VOTE for Feeling Ostomistic in the SOCIAL GOOD section today!
Everyone who votes goes in the draw to win an iPad Mini too! All you have to do is enter your email, that is it!
Voting ends 7/11/14 and awards night is 14/11/14, I will keep you in the loop!
Friday, October 24 2014
I have been waiting a while to publish this blog post as I didn't want to ruin the show for anyone who has yet to watch the latest season of the show Winners & Losers (aired on 7 Tuesday Nights at 8.40).
But although this season had the usual up and down moments of emotion, there was something that really stood out to me.
I wish that I could say that I have always found the show relatable, but unfortunately I haven't had the luck of winning the lotto.
But there was something this season that made the show more relatable to me...
Have you ever sat there and watched a show or a movie and just either thought or said out loud the occasional 'uh-huh' or 'yup!'?
Well that was how I felt when watching 'Jenny' go through her diagnosis.
I really want to commend Melissa Bergland (who plays Jenny) on her very convincing and 'life like' portrayal of emotions felt when you learn that you might need genetic testing for a horrible inherited cancer gene that is prominent in your family.
It was so good to see the process and emotions felt from the time you undergo genetic testing, to waiting anxiously for 6 weeks for the results to come back, to meeting with genetic counsellors, to meeting with surgeons, to having 'that talk' with your family, to having the surgery, and to the grief that is felt after you lose a part of yourself.
I remember when 'Jenny' was first told that she did indeed have the gene, there were friends on facebook that were complaining about how 'over the top' or 'how exaggerated' the feelings/questions and emotions expressed were.
But you know what?
That really made me quite angry.
People who haven't had to go through the torment of learning you could have this inherited cancer condition really have no idea of the emotions or thoughts that race through your mind.
I fired up and said how accurate the portrayal was and so relatable as I HAVE BEEN THERE, I have asked those questions, felt those emotions and had "that talk" with my family.
When we first learned of FAP:
I remember when I first learnt that this inherited cancer causing disease was in our family- it was a week after my wedding (2010) and my dad called an "urgent family meeting".
He broke the news that he had terminal bowel cancer and that his form was caused by a condition called FAP that is a rare inherited disease and that we would all need to be tested at some stage down the track.
I remember looking around the table at my dad who looked so scared, and to my siblings whom some were trying to comprehend what just happened and the younger ones who didn't quite understand what was happening.
I remember my dad looking at me accross the table, squeezed my hand and mouthed "it will all be okay Pumpkin".
I was 19 at the time and my paternal siblings (then) ranged from 17, 15, 13, 11, 9, and the youngest was 8.
Dad dismissed the kids from the table as he wanted to chat to me and my husband alone and he said he had been speaking with his doctors about the symptoms I was already showing and it was suggested that I get tested ASAP.
The getting tested/diagnosis process:
I went for the genetic test that following week, which was a blood test and waited anxiously over the next 6 weeks for the results to come back.
That day came and I went into the appointment with a feeling in my gut that I was about to get the news that we dreaded but kind of prepared myself for the worst.
It was confirmed I too had FAP and the geneticist went over what happens next, what having FAP will mean for me and my husband, and what it would mean going forward.
The following week I had my first colonoscopy and gastroscopy (boy was that a first-time experience I won't be forgetting in a hurry) and a couple of weeks later it was confirmed that there was large polyp growth in my bowel and rectum which had spread to my stomach, duodenum, GI tract within 6 months.
I then had to have appointments with OBGYN and fertility specialists to talk about the future possibility of having a family and what we wanted to do as FAP is a 50/50 chance of being passed on. We went over plans of doing IVF where they can screen each embryo for FAP and also met with colorectal surgeons to discuss surgery options.
Initially it was thought that my case plan could be loosely based on my dad's history in the sense that he was 39 when he was diagnosed with FAP/terminal bowel cancer and that I too could have the 'late onset' which would mean delaying surgery until I was around 26-30... this meant I had 7-11 years to start a family, I was in no rush....
Then in 2012 my whole world was turned upside down.....
In march (on the 10th) I celebrated my 21st birthday and on the 11th my dad celebrated his 41st birthday. The following day we were told that he doesn't have much longer to live it could be a day or it could be a week. That night he passed away at around 3am the following morning.
Then in October on the 8th I had my routine 6 monthly colonoscopy and two days later on the 10th had a laparoscopy, hysteroscopy and cystoscopy and subsequent pelvic surgeries where it was confirmed I had severe stage IV endometriosis and due to the level of damage was placed in a medically induced menopause for 6 months while my body tried to recover.
A month after the colonoscopy, the test results of the biopsies of my colon returned and showed that my bowel was beginning to show early signs of turning into bowel cancer and that I only had months to have my entire bowel removed before the cancer fully turned and spread.
I was struggling with the news and tried to keep it to just my husband and myself as I didn't want to burden my family who were still grieving the loss of my dad, being the first Christmas without him and not to ruin anyone's Christmas I bottled it all up.
Inside I was going through the range of emotions there was:
What made it hard was when I eventually did decide to tell family about the diagnosis and impeding surgery, it was about 1 month before it was all due to happen.
Most were angry at me that I kept it from then, but there were the remainder that felt that "the surgery was uncessesary" or that "it is too drastic surely there is a better option, go get a second opinion".
But the reality was I could get my bowel removed now BEFORE it had turned into cancer OR wait until the cancer turns, have my bowel removed and hope that it was caught and removed early enough.
I felt that it was better to be preventative then to be sorry- and I knew just how 'Jenny' felt. I even cried with her, because it was that real and too close to home for me- that I felt like the show just "got" me.
The grief experienced when losing a part of yourself:
After Jen's surgery there was an episode where she grieved for what she lost-her boobs... now some reading this might be thinking "c'mon that is just ridiculous grieving over losing your boobs".
But would you believe me if I said after my surgery I grieved over the loss of my bowel?.... because I did.
I know it probably sounds weird and gross to be sad about losing your bowel, but it was that I felt a part of me was missing (although literally was) that with it I felt like I lost my independence, I grieved for the loss of my dad, and I threw the biggest bloody self pity party I ever have had. It was so emotional and such an ordeal that I had to learn a new way of what my life would be like and it was a lot to process and adapt with.
Mostly it was hard to adapt as for 21 years if I needed to 'do a number 2' I would go to the toilet and do my business, but with no longer having my large bowel I had to adapt to the idea and thought that I would essentially be going 'number 2' 24/7.
Although it has been a few years now since my initial diagnosis of FAP or almost 18 months since my surgery, those emotions are still there.
Thank you to the writers and to Melissa Bergland....
So I thank the writers of this latest season of Winners & Losers for helping to show the real side of learning what it is like to go through genetic testing and preventative surgery, and to help people like me feel like someone simply 'gets them'.
Thanks again Melissa Bergland for your accurate portrayal of the emotions experienced.
P.S has there been a show that you could strongly relate to? If so leave a comment below of the show and what made you feel so relatable to it.
Where to get help:
Like my family, if FAP is something that you are affected by or wanting some more information and support you can contact the Cancer Council who have information that can help you, and also has a heridetary cancer register that reminds you when you are due for your next colonoscopy. Find more information on FAP via their website.
Like the Gross Family, many Australians are affected by Breast Cancer.If you or someone you care about has recently been diagnosed with breast cancer, contact Breast Cancer Network Australia (BCNA) for a My Journey Kit, a free information resource for newly diagnosed women - 1800 500 258 or www.bcna.org.au.
Monday, September 29 2014
Today I went for my first ever PET scan.
Now before you ask... no it wasn't a scan for my pet, I don't even have one.
The PET of PET Scan stands for Poistron Emission Tomography.
Why was I needing this scan done?
I saw a specialist in Sydney in August on the 26th, and he said he needed to consult
Up until Last Tuesday I hadn't heard anything which I assumed 'no news is good news',
They thought it was best if I went for a PET scan ASAP as they think that the mass in my
Normally I am pretty good at holding myself together and not letting things get
So by Wednesday I had an appointment for the following Monday Sep 29th,
I know leading up to the scan I had no idea what to expect as I only knew two
But I knew it was important if I blogged about this experience in the hopes of not
What to expect when having a PET scan?
Now first things first, this scan is a non-evasive scan and doesn't hurt
1) You will be advised of your fasting requirements such as the last time
2) When you are called through you will be asked to change into a
3) You will be weighed and your height measured to confirm the right
4) You will be ushered to a small, quiet room where there is a recliner
5) You will be told to remain calm and relaxed over the next hour so
6) Once the hour is up you are asked to go to the toilet before the
7) After the whole body scan is complete you will be taken to
So all up the process took around 2-3 hours, so just be sure to
You also will be advised to avoid contact with anyone who is
So I hope that this is informative and can help you to prepare
Thursday, August 07 2014
This week has been a pretty emotional and difficult week, well actually the last few weeks even months have been difficult.
You might recall me mentioning that I have been sufferring from acute pancreatitis for the last 12 months.
Well, yesterday I got home after spending the last 10 days in hospital with pancreatitis, which has now been promoted to being chronic pancreatitis.
Doctors think this latest episode was due to the pancreatic stent that was inserted a month ago (that should have fallen out) is still comfortably wedged in there and is causing irritation and inflammation.
So... a CT scan was ordered to get a bit more of a look of where the stent is and to look at my pancreas.
What doctors found on the CT scan wasn't just that the stent is still there, but that doctors found a mass in my abdomen.
I got the news on Sunday evening and it wasn't what I was expecting to hear my doctor say....
I cried.... I broke down and just cried and cried. I cried a lot.
I cried so much. I cried for myself, I cried for my family.
I cried because FAP has taken so much from me and my family already.
I was told that oncologists would be coming to see me the following day, along with my specialists to discuss whats next.
I called my husband and close family, and I felt terrible giving the news. It made me realise how my doctor must have felt.
I would be lying if I said that I slept that night, because I didn't- I just couldn't switch my brain off.... I was and still am scared.
So the next morning my amazing colorectal surgeon came by to see me, as everytime I am hospitalised with pancreatitis he is my doctor. He confirmed what his resident had told me the night prior, and he looked saddened to confirm that there was a significant sized mass and what it meant. One thing I love about him being my doctor is that he is so compassionate and cares about his patients. He makes you feel human.
He told me that he was needing to speak with oncologists, radiologists, specialists from RPA and Melbourne who deal with FAP. He told me that a multi-disciplinary team was being formed to come up with a thorough plan.
He started talking about what it could be and what it would mean. He thinks it might be a desmoid tumour-related to the FAP.
He mentioned chemotherapy that is used in treating breast cancers that can be used to target the mass, but he needed to consult and get several opinions from experts before going forward.
So now I just wait to know more, which should be this coming week once all the specialists have come up with a plan.
It probably sounds shallow and selfish, but I am so scared to lose my hair and go through chemotherapy.
Just wish I knew what was in store for the future.
Until then I will try to stay OSTOMISTIC.
Saturday, July 12 2014
There are many disabling and debilitating health conditions that are considered 'Invisible' illnesses.
But an 'iNVISIBLE' illness is referred to an illness that you can't see with the naked eye,
SOME invisible illnesses are:
You would be surprised the amount of judgemental things I hear daily from people.
10 THINGS AVOID SAYING TO SOMEONE WITH AN INVISIBLE ILLNESS
1. "But you don't look sick!"....
But it is also important to keep in mind that while i don't look sick on the outside, internally I could be in agony or discomfort- quite often feels like there are hundreds of knives stabbing me internally.
2. "Must be good not to work!"....
I hate that I am having to expect my husband to work so hard and that the medical bills and other expenses are piling up. I really feel bad enough about my situation without you making me feel worse. If I COULD work right now I would in a heartbeat, but most employers aren't empathetic or understanding when it comes to employees being sick- trust me!
3. "Maybe it is all in your head"....
.....Now on the topic of what is in my head... I know there is certainly a brain up there, as I have seen my brain (along with millions of Australian's) when my brain surgeries were filmed on the RPA tv show.
4. "Surely it isn't that bad"....
Also its not an exaggeration when I say that endometriosis is a bitch! When I get my monthly visitor, guaranteed I will be in bed for days as the pain is excruciating, the nausea and vomiting is debilitating and the bleeding is so heavy that on top of my really low iron levels that it makes me so much more tired. It also isn't an exaggeration when my Doctors are considering a full hysterectomy due to the pain and complications from my endometriosis.
5. "There are people worse off then you"....
6. "If you get more exercise and lose more weight"....
Before I had my brain surgery I was a normal size 14/16 and I was happy, I know I wasn't stick thin but I was happy with my curves and didn't let that define me. I spent 3 months in hospital having multiple brain surgeries with the last 2 months fighting a dealy MRSA infection that was on my brain and throughout my blood. I could have died! The only way they could fight the infection was to pump me through with high doses of steroids used to fight certain cancers which little did I know caused significant weight gain! I was discharged from hospital 40kg heavier. Can you imagine the shock when all the clothes in my suitcase were some gorgeous tight fitting skinny jeans and tops that no longer fitted. If it wasn't hard enough almost dying I had to adapt to how people were treating me.
With every new health obstacle it gets harder and harder to lose weight as the next is more debilitating then the last. But please understand I am trying to do what I can when I can. I am sure if you felt the pain of hundreds of knives stabbing your stomach you wouldn't be exercising either!
7. "Change your diet"....
8. "You're just depressed you need to get out more!"....
But you also don't realise that I suffer from social anxiety that it is hard for me to want to be social or be around other people. But please don't make me feel like being I can't be upset when I don't feel I am coping.
9. "Aren't you feeling better yet?"....
10. "You are just wanting attention/sympathy!"
So please think carefully next time you speak to someone living with an invisible illness.
I know a lot of the time people do generally mean well, but there are often times where what you are saying can be quite upsetting and be damaging rather than actually helping. My intention for this post wasn't to offend or upset anyone, but more to raise awareness of how hurtful words can be and to be mindful next time you think you heard of the cure for cancer and that I should go and try it... if in doubt of what to say the more respectful thing can be silence.
Tuesday, April 02 2013
You might be wondering what an ostomy is, and I will try my best to describe from my knowledge and research. Often you will hear or read ostomy and stoma that are used but have very different meanings. Most commonly you would have heard before 'colostomy'. Until my surgery I assumed an ileostomy was a colestomy. So I found it great to know the difference.
I hope that this helps you to understand the difference between a ostomy and stoma and the different preceedures requiring the use of an ostomy and a stoma.