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Feeling Ostomistic
Saturday, November 11 2017

CW: This post talks infertility, miscarriage and other heartbreak caused by having a faulty body


Our family photos Xmas '17, how tiny and adorable he was!

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.


Russ and Dusty Hi-5ing as they visit me in hospital

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.


Have you got a little furbaby? Have you found the benefits they have made to your health and wellbeing as well?

Posted by: Talya AT 05:40 pm   |  Permalink   |  1 Comment  |  Email
Tuesday, September 19 2017

Today was a pretty big day running around between appointments from one to the next, I was so pooped (exhausted) when I got home around 3pm that I went straight to bed only waking not long ago.

Yesterday and today have been the first days in over a month that I have ventured out of the house, it is a rather elated feeling when you feel so trapped and then suddenly you feel free. Hard to explain it really, but being cooped up all the time really gets to me emotionally. I think that is a massive attribution to my depression too.

So I welcomed the change of getting out of the house today.

So today's agenda involved meeting a new GP as my current one is on leave until end of Oct and I needed to see someone, running some errands and grabbing a bite to eat, then meeting with my bowel specialist who outside of seeing me in March (when I was admitted to the hospital) I was overdue for a meeting.

So first up: the new GP
I hadn't met with him before, Russ occassionally sees him when he can't get into our regular GP. I sat down and he said "what brings you in today?", I replied "oh I just have a specialit's appintment this afternoon and need a referral as my regular GP is on leave". 

I thought the appointment would be straight forward, I wasn't preparing myself for getting into deep and meaningful conversations today.

Unusually, I am still not used to telling strangers "hey, yeah so I am 26 and dying from cancer" I feel I am always having to say it with a smile in the hopes that it protects them from any hurt they could feel, I also hate feeling morbid and smiling also helps me. 

I get a bit anxious when going into depth about my FAP story and how this is more than just a bowel cancer gene, so many doctors don't understand the complexity of it unless it is a field they study... so I was rather surprised when this doctor knew about it and said "ahh yes it can invade multiple structures" which was a relief as it gets exhausting sometimes having to fight and advocate and educate someone especially a doctor on diseases that you live with - I really didn't have the energy today to do this so it was great that he had understanding.

He acknowledged that no matter how many years he has been a doctor or how many patients he has seen that it never gets easy when you have a patient who you can't do anything for other than what issues or symptoms they had.

I got my referral for my appointmet and a script for some antibiotics for a nasty wound I had and he took a swab of it.

One part of the conversation that surprised me though, was talking about my beliefs of what comes after I died. I don't often get asked and I said what I felt and that is a whole topic for another time I think.

So off I went to the errands we had to run next (go collect a parcel from a courier depot way out of town) then forgot all about the chemists to get my script filled and went to lunch thinking we had plenty of time. An hour passed still no lunch and had 10 minutes until my specialist's appointment when the food finally arrived and I scoffed it down and left. Was rather disappointed as I had been waiting and looking forward to that lunch date for sooooo long and it wasn't able to be enjoyed afteral.

Next up: Specialist's appointment
I had called them 15 minutes prior to the appointment explaining the whole lunch debacle and that I will try and be on time but could be a few minutes late. They were okay with it, but of course the one day you run late the doctor is on time!

So he called me straight in and I sat down.

He asked how was the concert (the whole reason I discharged myself from hospital) and I excitedly told him how that not only did I win the tickets to the Dixie Chicks but they wanted to meet me too, which is something they don't often do on their tours. He was so happy. I continued to tell him that they dedicated a song that was special to me and my dad to us and he said he was so glad I could make the concert of a lifetime.

He is a great and caring doctor, he has been my doctor since 2010 so he has been there for me right from diagnosis of the cancer gene right up until this point of my life, so he has been with me through everything. He has an amazing bedside manner and has always gone above and beyond for me, he is so kind and he even takes the time to talk to Russ down the street and ask about me.

Before we dwelved into what I needed for today's appointment, he asked what can he do for me, anything? Not often I get asked what extra assistance I need, but I am not good with asking for help. I did ask for possibility of him booking me respite at the hospital again soon as I need it, he said consider it done.

We talked about what is currently going on in my bowel, Russ never comes to my appointments with him as he always usually was working, but luck had it that he could come with me today. Russ was the one that brought up the pain when I eat before I had the chance too, it was all stuff paliative care have explained to me before, but the first time Russ heard a doctor explain it.

Basicly....
The tumour is blocking the blood supply to my small bowel which means that essentially my bowel is experiencing angina.

Imagine someone with heart issues tries to walk 100m and experiences sharp pains or angina, essentially my bowel is not getting enough blood supply for it to work. My body quickly rushes blood and it surges to the area to try and make it work. Because of the short blood supply my bowel is trying to run a marathon as a sprint. Gee is it bloody painful!

So everytime I eat I get horrible pain that lasts hours after my meal.

He suggested that I try shakes, protein drinks nothing foody (blended nutribullet as it isn't really a drink) and just try those. I know when I drink or have soft stuff like icecream or zooper doopers (ice blocks) there isn't the pain, which he said would be true as it isn't food and anything food like requires the stomach and bowel to work to process it. He said watery soups would be good too, but I am not a broth type of person. So drinks and ice cream it is!

Next issue was to do with my stoma, when I eat say 7pm my stoma isn't actually working and processing bulk of my output until around 5-6am the next morning. It never used to be this bad. He said it is caused from a bowel obstruction caused by the massive main going-to-kill-me tumour as it is compressing the bowel to narrow and food can't pass properly until it is a massive push/release. He said it isn't my fault just again tumour related and even if I reduced meal sizes he said it wouldn't make a difference and that to not have as much fibrous or foods.

Before we left he did tell me that he thinks I have done an amazing job through all of this to remain the same kind and positive person, he said my attitude towards things have always helped him and he always admired how well I handled things. He said that he acknowledges that the last 18 months with my new stoma hasn't been easy but he said he is proud of how I have adapted and gotten used to it.

It made me feel better to hear from someone such as my Doctor to think highly of me, made me feel like maybe I am strong afterall.

☟ ☟ ☟ ☟ ☟ ☟

Sooo pretty much that is where I am at, that is latest health update and I am just trying to make the most of whatever time I have left. It is hard to know you are just basically waiting until you die, but I am trying my best to not let that get the better of me. I know (well, I hope) I still have a lot left to give.

If you read this far, thank you! I know I don't always update my blog as often as I would have liked, but sometimes when you spend 20 hours of your day in bed asleep it is just easier to microblog on facebook or instagram. You can follow me between blog posts by searching @feelingostomistic or twitter is @feel_ostomistic.

Posted by: AT 11:01 pm   |  Permalink   |  0 Comments  |  Email
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!

Posted by: Talya AT 01:01 am   |  Permalink   |  0 Comments  |  Email
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.

Uh huh?

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.

Posted by: Talya AT 05:01 am   |  Permalink   |  0 Comments  |  Email
Monday, March 21 2016

Reading that heading, are you thinking "Wait did I just read that right?".

Well my friend, you certainly did.

Firstly, let me start by saying this is nothing sexual. Not that I am judging anyone who is into that sort of stuff... but my doctor advised me I needed to start fingering my stoma for medical reasons not sexual.

You might recall me complaining and sharing the recent experience of my new stoma here on my blog and on social media, and if you've been following from home you'll know that this new stoma is a bitch and is tricky and is very leaky!

One of the problems with the stoma, is due to the remaining tumour being completely adhered to the stoma it is pulling the stoma down from the surface and making it retracted.

Imagine a cone or a funnel, how you have a bigger and wider opening towards the top but at the bottom/base it is a smaller and more narrower hole.

Now imagine that small hole is under a lot of pressure and is getting smaller and smaller because it is being pulled down. 

Imagine that hole getting so small and closing up that passing any sort of waste through the stoma would become rather painful... That smaller hole is the part of my small intestine (small bowel) that USED to be stiched to the surface of my skin, and is now sitting some 5cm below the surface of what now looks like a belly button hole.

.. well this is what I am facing with my new stoma. There is a high chance that I could need corrective surgery (which might only make things worse) if it gets to this last stage.

But my doctor told me I can avoid this by doing one simple thing each time I do a bag change or at least once a day... and that is fingering my stoma!

It doesn't have to be rough or anything, but if I put my finger down into the stoma and just sit it there it should help to stretch it out. It does kinda hurt, it does bleed a little and there is often a huge gush of waste coming out.

But as much as I hate doing it I also don't want to be in the position where it will close over an become painful (or I should say more painful).

I just wish I could go back to how things were with my old stoma... I am really missing it!

disclaimer: please don't go stretching your stoma hole willy nilly without the guidance of your bowel surgeon or stoma nurses, I am simply sharing my recent experience in the hopes of helping someone in a similar situation feel less alone or feel empowered enough to ask if it is something they need to do to help their own difficult stoma.

Posted by: Talya AT 06:00 am   |  Permalink   |  0 Comments  |  Email
Sunday, March 13 2016

I first became a member of the ostomate world back in May 2013, when I had all of my large bowel and most of my rectum removed in a procedure to save my life from the perils of bowel cancer.

It wasn't until July 2015, that I experienced my first really bad bag leak during the middle of the night resulting in soiling not only the doona and sheets, but the mattress protector too.

Worst of all, I wasn't even at home. I was staying in a hotel for a few days in Melbourne.

I had to call the front desk at 3am in tears asking for fresh linens, when they replied they don't have any until room service come in later that morning and that it will be best to change rooms. I was absolutley humilated and mortfied but the guy reassured me that it was okay and it wasn't the worst he has seen. (Got me thinking about how dirty some people can be!)

So when I continued that short holiday (was actually down there for a big bloggers meeting, which was exciting) and then when I got home I made the decision to sleep with towels on my bed and wrapped around my belly, that if my bag did leak it would be somewhat protected and not cause a mess.

Afterall, my mattress and bed cost me $6k and it is white leather, so I am rather protective of my bed... initially I was too scared to sleep in it with the leaky stoma... and it isn't just at home I am scared of a leak, I am hesitant to stay at other people's houses for that reason.

I know that you're thinking "just get a mattress protector", well I have one but I worry it won't give me a lot of protection if it is a heavy leak (which most are).

And it got me thinking about what disposable and cheap products could I use to help give me peace of mind when sleeping.. and I came up with one great one (and will also share what one reader's suggestions were too).

So if you have a unpredictable and leaking stoma like me, here are some affordable ways to protect your sheets.

Cheap, thick and disposable table cloths
I was lucky that I had a garage filled with all these party supplies I wasn't using after purchasing and attempting to sell through a failed business venture.. so I have been putting the table cloths to great use and they are rather thick and durable and best of all cheap and disposable. I know the reject shop or other cheap shops sell them too

Some suggestions from a reader were:
Plastic shower curtains
Garbage bags torn open
Rubber-backed curtains

Update: What I use now and how I protect my linens

Since writing this post a year ago almost (it is now May 2017), I have been trying out new methods and ideas to help protect my linens and mattress from my leaking stoma in a way that was easy to manage and was being savvy too.

So I found a product called a "Kylie" which is a quilted mattress topper that has a rubber/waterproof underlay so nothing will seep through to the mattress and sheets underneath. I found these at a local homecare aid store for around $40 for a double, I purchased a couple through the help of a local service and have one on my bed and one spare.

So now when I do have a leak, I simply take the soiled Kylie off the bed and into the wash and put the new one on the bed. I find it is easier for me to manage when I am at home on my own while hubby is at work.

Here is a look at how I place it on my bed. I make my bed/sheets as normal, I put the kylie down then a disposable bluey as an added measure. I know the Kylie is meant to go under the sheets and tucked under the mattress, but given how heavy my mattress is it is not something I can manage/change on my own.... so this is what works for me and for a year now I haven't looked back. I also take a kylie with me when I go and stay at family or friends places too.

 

Have you found something that helped you during leaking bags of a night when you were asleep? Comment below to share or join in the conversation over on the facebook page.

Leaking Stoma Tip:I just got home from being away for a couple of days staying with family.It wasn't the first time I...

Posted by Feeling Ostomistic on Sunday, March 13, 2016
Posted by: Talya AT 06:41 am   |  Permalink   |  0 Comments  |  Email
Saturday, February 20 2016

For those who have been following my facebook page would know of my struggle the past several months involving a rather aggressive and fast growing Desmoid tumour that was causing me issues and making me sick.

I haven't blogged much about my tumour and experience, just been mirco blogging on my facebook page. But today, I am wanting to write about my most recent experience which involved having the tumour removed and having  a new stoma created.

According to the Desmoid Tumour Research Foundation a definition of a Desmoid Tumour is that these "... are tumors that arise from cells called fibroblasts. Fibroblasts are found throughout our body and their main function is to provide structural support and protection to the vital organs such as lung, liver, blood vessels, heart, kidneys, skin, intestines etc. and they also play a critical role in wound healing. When fibroblast cells undergo mutations they can become cancerous and become desmoid tumors (also known as "aggressive fibromatosis")..."

These tumours can be slow growing or extremely aggressive (which mine are) and can become life threatening when they locally invade or restrict on structures, organs or blood vessels.

I had two tumours (now I have one) both in my mesentery and one is also deep in my abdomen compressing on my kidney and also presses on my stomach and back often causing me pain when I walk short periods or am standing for a few minutes. Hell, even having a shower can quickly become rather painful and tiring! For those at home wondering how big this beast is, it is the size of a watermelon... but this one won't be surgically removed (too risky) and is the one that I have been told will eventually kill me over the next few years and the aim of the chemo is to try and shrink it or stop it from growing before it causes too much damage.

The tumour that was removed last week was the size of a rockmelon (see image below of side on view of my stomach) and has since left me with not only a huge cave-in of my stomach but a new stoma which I am trying to adapt to but it is proving to be a challenge.

Surgeons are usually reluctant to remove these tumours due to their aggressive recurrence and because the more surgery you have the more chances for more tumours to appear, especially when you have a genetic pre-disposition to these tumours caused by FAP.

But, the reason my tumour was removed was because it was dying inside (turning necrotic) and was causing infections, ulcers and fevers and it was decided that it was best to remove the tumour now in hopes of preventing further issues and to make me better enough to FINALLY resume chemo to work on the other beast.

So I have been in hospital since New Years Day back home in Coffs Harbour with the exception of a week where I got to go home, but then I was readmitted there for 10 days while I waited for a transfer to Sydney to have surgery. So I got to Sydney via air ambulance on Tuesday the 9th of Feb and had my surgery on the 15th of Feb.


Me the day after surgery with my trusty Redkite blanket

The surgery went well and I was up walking the next day and had impressed the doctors so much (and myself for that matter) with how well I was doing that they were ready to send me home last Thursday. But my swelling went down on my stomach, and my stoma changed too and my bags no longer were sticking and getting a good seal so it kept leaking.... and leaking... and bloody leaking!

In a 24 hour period from Thursday to Friday I had experienced about 8-10 bag changes, I lost count, and my poor skin was so raw and sore it was quite uncomfortable. Then Friday to Saturday I had almost 24 hours without a leak, then the last 24 hours have experienced about 6 bag leaks and my skin is so sore I just want to cry!

It is so hard adapting to this new stoma, especially when it is so different comparitatively in size. My old stoma I miss so much as it worked and very rarely leaked, where as this one is so small and it is now sitting in a crease in my stomach where I never had a crease before the surgery, but worst of all it has become retracted and is under my skin.

As I said, I am REALLY missing my old stoma and struggling to like or adapt or feel confident with this new one. I know I needed my tumour removed and I know long term it should prove beneficial, but I am struggling to see the ostomisticness right now... which I feel like such a fraud as my blog is called 'optimism with a stoma'... 

I know I have gone through this before, it was 8 weeks of constant leaks before I found the bags that worked for me and then I fell in love with my stoma and the new life and freedom it gave me... but I miss that freedom and confidence and just hope I can perservere and one day will fall in love with this new stoma too.

It was almost three years that I had my first stoma, it had become such a huge part of me and who I am and I know this will sound strange but I do feel a little bit of grief and loss over my stoma. I am not only grieving for my stoma but my independence, dignity, confidence and freedom.

If my tumour hadn't attached itself to my small bowel and stoma I wouldn't have lost such a HUGE chunk of small bowel, and they would have had more bowel to work with to create this new stoma rather than opening me up to dig more bowel out and opening me up for more risks of tumours and complications.

I know it is a process of trial and error, I just have to get through this next bit to fully accept my new stoma.

Posted by: Talya AT 08:41 pm   |  Permalink   |  0 Comments  |  Email
Thursday, December 17 2015

November (like October) involved not as much chemo as I would have liked and meant more time spent in hospital.

NOV 3RD, 2015: Had chemo today, was the first day in 3 weeks that I have had it was also Melbourne Cup day. I felt rather seedy the following day(s) and rather tired. Even the blandest of foods I couldn't stomach and wasn't until a few days after chemo that I actually ate something. I actually ended up being admitted into hospital on the 5th of November with fevers and suspected infection somewhere. I had a CT scan which showed my tumours haven't shrunk but they hadn't grown much.

Was a little traumatic on the Monday(9th) when a doctor came to tell me that I had a new tumour and I spent hours crying and hyperventilating, only for my other doctors to come and tell me it was a tumour I already knew about.

After that incident, I asked to be transferred to the Private Hospital and had a few days of rest to let me recoup.

NOV 10TH, 2015: No chemo today as I was in hospital


Me before chemo - lunch at Mangrove Jacks

NOV 17TH, 2015: Had chemo today, was the first day in a fortnight I had chemo. My mum picked me up early and we went and had lunch by Mangrove Jacks, it is this really lovely restaurant situated on Coffs Creek and is majestic.. such a tranquil spot! Was rather funny at lunch there were these seagulls in the water being chased by big fish, the poor birds were paddling their little legs as fast as they could to get away!

 My port bled today for the first time in ever, which had me excited that maybe all the issues of my port were behind me. I did wake this morning to a bunch of sweet texts from my sister (14) and brother (18) wishing me best of luck for chemo. I am loving the family support recently, it is reasurring knowing you're not along in this huge battle.

I started some new medication today, my oncologist prescribed me lorazapam which I am to take the night before chemo, the night after I have had chemo, and the day after I have chemo which will hopefully help keep my body calm and works well with my other medications he gives me during chemo like ondanzatron.

I had fevers a couple of days after chemo, but with some panadol I was able to manage the fevers at home, but have been sufferring bad with kidney pain and migraines.

NOV 24TH, 2015: Didn't have chemo today, they tried to use my port but it wouldn't even flush saline through! I went and had a portagram done, which is a scan of your port to see if it is working and turns out the thing is blocked! I have to come back on Thursday (26th) and have a procedure done to unblock it.

I decided to wear my storm troopers headwrap to chemo today along with my Dior lippy I got from Look Good Feel Better workshop (loving the pink!). I got a lovely compliment from the volunteer today, she said "you always look pretty with your hair wraps". A compliment from a stranger always makes you feel better.


Me all ready for chemo in my storm troopers head wrap

NOV 26TH, 2015: Today I am having my port unblocked. It is a surgery that requires the doctor to make an incision into my groin and going in through the artery he can feed a cable up past my heart and chest and to my neck where my port is and unblock it. The surgery went well and was a success and the port started bleeding back. The surgeon also was able to reposition the port so it wasn't sitting so high up.

I woke up half way through the procedure and it was rather bizarre just laying there not able to feel anything but know that you are being poked and prodded.

Once I was awake, I had to stay in bed for an hour to reduce any complications post surgery and then I was allowed to sit in a chair, have a sandwhich and wait for a couple of hours before I could be discharged.

The incision site was rather sore for a couple of days and chemo will be scheduled for next Tuesday (1st Dec).

Even though it is month two of this chemo saga, it is only something like 4 days (cycles) I have had of chemo because of all the interruptions such as surgeries, port not working and being in hospital. Here's hoping things go a bit more smoothly next month... I am a bit anxious about Christmas and hope to be able to spend it with my family.

 
Posted by: Talya AT 01:41 am   |  Permalink   |  1 Comment  |  Email
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:
29.09.2015:
Met with surgeon to discuss portacath surgery. I had to drive down to Port Maquarie (roughly 3 hours south) as the surgeon here in Coffs wasn't available until the end of October and my chemo was to be started sooner rather than later. I really didn't want to have a PICC line to have chemo and I am so glad I advocated enough to let me go to Port for a consult and surgery as I got a Purple portacath. My doctor thought I was strange for being excited about a colour of a device implanted under my skin... but purple is my favourite colour and it made me feel so much more positive about the whole experience.

02.10.2015:
Today was the day that I had my surgery in Port Private Hospital (their sandwiches still don't beat Baringa Private at Coffs... in fact no where yet does) and the surgery went well. I was in a lot of pain and in pain for days afterwards but you can read all about my experience over on "Portacath and What to expect when you need one for chemo".

07.10.2015:
My first day of chemo, 5 days after my port was put in and I am feeling hopeful about this treatment. It was like it was a blessing and everything fell into place, it was like it was meant to be. There was something hopeful about this one bag (below) of chemo Caelyx that was worth $6000 AUD for the bag that made me think that this would work.

The day involved getting there early to start chemo, then I had to have my port accessed and blood taken. While waiting for the blood tests to come back (to make sure I was well enough to have chemo) I had some bags of fluids to keep me hydrated and a nice toasted sandwhich.

It was about 2PM when I had my first try of chemo, and beforehand I was warned that this chemo has side effects of a reaction (in rare cases) that results in feeling hot like you're on fire, sometimes pain in your back and heavy chest with inability to breathe. It was about 5 minutes (if that) into the infusion when I started feeling warm in my face, then it radiated to my whole body. I stayed calm and thought "this is okay, a little bit of heat never hurt anyone". Then it intensified around the same time that it felt like an elephant was sitting on my chest. My chest felt so heavy I couldn't breathe no matter how hard I was trying. Then the pain started in my back around my kidneys and was rather pulsing, it was so painful and then pain shot down the nerves in my legs and my whole body was going into spasms and my heart was racing.

By the point that my chest was heavy I had called the nurse over and they were frantically trying to stop the infusion. They called over the doctors who advised an ECG was needed and to give me anti-reaction meds to try and control the pain and slow down my heart rate.

It was then decided after an hour that we would try it again, but this time at a much slower rate, which the same symptoms (despite the anti reaction meds) started about a minute or two in.

08.10.15:
I spent the night before in hospital under observation after the reaction yesterday to ensure that I was okay and ready to try it again this morning. Except even with the anti reaction medications and slower rate of infusion (would have taken 6 hours to complete) I still reacted and realised that I am allergic to Liposomal Doxirubicin and that it is not the right chemo.

The doctors consulted with my Sydney oncologist who decided I would try the weekly over 52 weeks regime of Methotrexate and Vinblastine.

14.10.15:
Today was the day that I started the new chemo regime of Methotrexate and Vinblastine (a low dose weekly course of combination chemo that has had success in clinical trials). I was pretty nervous about starting a new chemo given how horrible the experience was last week when I reacted and could have died to Caelyx. The day started off getting there early to meet with the doctor and to have my bloods taken. While we waited, I was lucky to be in one of the rooms with a bed so while I had fluids infused through my port, I just napped. I got very little sleep the night before as I was too scared and anxious.

Due to the high toxicity of one of the drugs, when the Nurse has to manually push through the drug she has to sit there with me the entire time to monitor my port and make sure that it doesn't leak into my skin as it can cause nacrotic skin tissue like a chemical burn. She became my chemo buddy. I didn't feel any side effects and even felt so fine that I was able to drive home.

17.10.15:
I found an hour after chemo I started feeling the nausea and felt rather seedy like I was hungover, which I didn't feel like eating for days, for someone who loves food even the thought of it made me feel sick! I ended up feeling a bit sick all day with fevers then had a 39'C temperature, which I was told anything over 39'C means a trip to hospital. Turns out I had excoriated skin between my butt cheeks like big raw ulcers.

I spent the next 2 weeks in hospital and my chemo (was to be on the 20th and 27th) were postponed as I needed all the healthy cells possible to heal my wounds. I had twice daily applications of zinc (sudocreme), Rectinol (creame for heamoroids it has a numbing agent in it) and another gel based cream that was also an anti fungal but had local antiseptic. The most horrible part of having raw skin was when it needed to be scrubbed clean and washed. It was excruciating and while I have a high pain threshold I was screaming and often in tears. It wasn't very pleasant. They think it was a combination of chemo and my immune system was down and it was the reason for this. But I lost all dignity when many people were looking at my bum and cleaning it and poking it... I felt so embarrassed that this happened even though it wasn't my fault. But the nursing staff were great and while I felt embarrassed they did good at making sure I was okay.

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!


 

 

 
Posted by: Talya AT 04:32 pm   |  Permalink   |  0 Comments  |  Email
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.

Friday 06.11.15:
I went for a CT scan of my abdomen for a suspected fluid leaking into my abdominal wall and possibly the reason I had fevers and have been in hospital since Wednesday night. The scan was to also compare my tumour growth and check on the tumours to ensure that those hadn't yet turned septic and were the cause for worry.

The doctors confirmed that either there is a new tumour to the right of my stoma or that it is a cavity that is filling with fluid from my bowel or stomach and needs to be drained. Surgery was discussed but they decided to do an ultrasound on Monday to get a better view of what is going on.

Monday 09.11.15 1PM AEST:
I went for an ultrasound and the radiologist came in and said "that isn't a fluid cavity that is a tumour and without knowing this patients prior history I suspect it is a desmoid tumour". He turns to me and says "I am sorry you have a large tumour 10cm x 11cm".

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.

So I broke down I couldn't stop crying and I was freaking out that there is a tumour somehow in between two other tumours and my stoma and where on earth is it fitting and is my stoma going to be okay, will I be okay, does this mean my death is looming nearer than I expected? These were all questions running through my mind then the biggest freak out of all was "I can't die just yet, I am too young".

I was howling (literally) uncontrollably and couldn't stop crying. I needed support I needed someone to tell me I was going to be okay... I called my husband at work and my mum who came and sat with me and brought me a drink and some lollies.

Monday 09.11.15 3PM:
My doctors came in, first my bowel surgeon who was talking to me about my tumours and explaining how sometimes they can die from the inside out when chemo is involved and that the centre is liquid and can become septic.

Then my oncologist and his team came by and he asked what had me so upset. When I told him he replied "I am so sorry for all this upset caused but someone told you the wrong information, you don't have a 'new' tumour you know it is there it is the big ball under your skin at the top of the stoma". I was all confused and said "Wait whaaaaaat?"

He replied "it is new on the scans you've had here at the hospital, but not new on the scans that you had back in August which is why I asked your husband to bring them in, I am so sorry someone told you you had a new 4th tumour but you still only have the three."


My tumour the "new" one. To the left of the image is my belly button, my stomach normally would end there but that is how big the tumour is.. see it resembles a ball!

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.

They saw how fragile I am and have transferred me over to the private hospital for a few days respite to help me recover, regain my strength and collect my thoughts again.

Lesson learnt... don't freak out until you know all the facts

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

 
Posted by: Talya AT 10:57 am   |  Permalink   |  0 Comments  |  Email
Saturday, October 03 2015


Today is World Ostomy Day, a day celebrated worldwide through a social campaign "Many stories, One voice" and using the hashtag #MyOstomyStory.

I first joined the ostomate club back in May 8th 2013 after a 6+ hour operation to remove my large bowel, most of my rectum and to have my permanent ileostomy formed. It was probably one of the hardest decisions I have had to make, I was only 21 when I was told my bowel was showing early signs of turning cancerous and that I only had mere months to have it removed before it had fully turned and spread, which by the point of the surgery I had just turned 22 (read my story here).

While it was hard to go into my surgery excited (or OSTOMISTIC as I put it) as I didn't know what life as a young person (especially a female) would mean after I had an ostomy, but little did I know it was one of the best decisions I could have made.

I am aware that there are many reasons people get a stoma and while these aren't always planned surgeries and can be done in an emergency situation, or that there are some that are permanent and some that are temporary, I think it is important that we celebrate ourselves and our ostomies, as I know without mine I wouldn't be here today. And for that I am eternally grateful.

So in celebration of World Ostomy Day, and for those who have or are considering having one, here are my 20 pieces of ostomy advice I have for you. If you are unsure of what a stoma/ostomy is, you can read about it here in one of my earlier posts!

Stoma tips and life-hacks:
#1. Keep Hydrated
This might be something you hear a lot, but it is so important when you have an ostomy (and even when you don't) that you keep your body hydrated at all times, especially in summer. But when you have an ostomy you are at greater risks of dehydration and dehydration can also cause fatigue. I have also been told by my stomal therapy nurses to drink an electrolyte sports drink at least once a day to help replace the salts and minerals that my body is losing. I drink a 1 litre drink of this a day plus a couple of litres of water. But I know when my body is feeling dehydrated (and especially when my output is more watery I get tired, really shakey and have no energy.
Read: my tips on avoiding a watery output

#2. Your boobs become a valuable asset
An important thing to remember when doing an ostomy bag change is that in order to get the most out of the bag and to prevent leaks you need to a) have a good seal and b) you need your bag to be sticky... so whenever I do a bag change the first thing I do is put the bag I intend to use tucked under one breast, while the seal/mouldable ring (I use coloplast mouldable rings) is placed under my other boob. I sit there for at least 5 minutes before starting the back change process so that it has time to heat the glue. Reason I use my breasts is that my stomal therapy nurse in our first consult told me "placing under your boobs is one of the warmest parts of your body and makes things more stickier". If you don't have boobs you can utilise, read the next tip.

#3. Invest in a hair dryer
In all honesty, the very first time I bought a hair dryer in all my life was the first day I was home after being in hospital from my bowel surgery, I remember sitting on the toilet naked and crying as I was about to do my 10th bag change for the day, I was sore, my skin was sore and I was like "f#$% this, I can't do this anymore". My husband kept asking "what can I do to help" and as it was middle of winter and cold I couldn't produce enough body heat to keep my bags sticking... so my husband had the best lightbulb moment ever and ran over to the supermarket and purchased the most decent looking hair dryer they had (from memory was about $20) and he plugged it in and sat there heating the bags up... they became so much more sticky! I now take my hair dryer everywhere with me!

Other tips to help make your bag more stickier can be read here!

#4. You'll find many uses for your hair dryer
Apart from your hair dryer being used to make your bags more stickier, I also use mine to help dry my bag after a shower especially when I don't need to do a bag change. I am one of those people that can get a few days out of each bag so I just sit there for about 5 minutes after my shower drying my stoma bag and stomach. Also, it is great to use in winter to quickly warm up your body after a shower, I don't know about you but where I'm from it gets so cold in winter!

#5. Avoid foods that cause blockages
One thing you really don't want when you have a stoma is a blockage, trust me when it is not only painful but is rather scary. There is a list of foods that you should avoid because they don't break down or they often would in people who have all their bowel. I remember when I first had my stoma I had a craving for Hawaiian pizza (Ham and pineapple) and imagine my horror when out come pieces of pineapple whole! Same goes for peas, corn, nuts, coconut and some foods like celery and tomato also don't break down. Your stomal therapy nurse can provide you a list of foods to avoid.

#6. Avoid foods that cause winds
Foods, when you have a stoma can a bit of a nuisence whether it is foods that cause blockages (mentioned in #5) or these can cause wind. Wind, when spoken about when you have a stoma is referring to your stoma farting.. and sometimes it can be rather noisy (when you don't want to be noticed for the girl with the farting tummy), or cause your bag to fill up quickly with air (sometimes so much your bag literally pops off or explodes). Although, sometimes stoma farts can't be avoided and just happen. But my husband is so sweet, when we are in a meeting and my stomach farts and I start turning red he just makes noises or coughs to draw the attention away... what a sweet heart!

#7. Avoid drinks that cause winds
Foods aren't the only reason for wind or fart production coming from your stoma bag, what you drink also plays a big part. Foods that are fizzy and gassy or alcohol can also cause wind. I also find after I have had aneasthetic from a gastroscopy, ERCP or from other surgeries that my bag fills up with more gas too.

When out and about:
#8. Take your stoma supplies kit everywhere you go when you leave the house
This should become part of your routine, I have two stoma kits one I keep in my bathroom and the other is a smaller and discreet version I keep in my handbag. Trust me when I say that when you don't have your kit on you, you'll probably experience a bag leak. I know my worst bag leaks in public have been when I didn't have a kit on me and it was horribly noticable through my clothes. Was a horrible and traumatising experience and one that brings me to my next piece of advice...

#9. Always pack a spare change of clothes
I find if I am going to a conference where I will be gone from 8am to 6pm or when I was doing studying on campus at Uni (and can even apply for work situations), have a big day of shopping planned or spending a good part of 16 hours travelling to Sydney to see specialists and driving home, I always take a change of clothes. I at least pack one change of pants, a shirt and a pair of undies. Thankfully, I am a bit of a crazed nut when it comes to my clothes and I have 4 pairs of the same pair of jeggings and they are the most comfortable versatile pairs of pants I have ever owned, so thankfully it just looks like I change my shirt.

#10. Jeggings or any elasticised pants will become a staple in your wardrobe
I wear jeggings... there I ADMIT IT... and I am not ashamed! Thankfully my jeggings actually look like jeans and are almost as thick so you can't really tell, but I found it so uncomfortable to wear pants with zippers and buttons, as I found they always sat RIGHT.ON.MY.STOMA and when my bag would start filling up either the bag would explode and I would be left in an embarrased heap, or  it was rather uncomfortable. I love my jeggings that they are elasticised waist and can wear them up higher over my stoma and much more comfortable.

#11. Baby wipes aren't only used for babies
I know what you choose to clean your stoma comes down to personal preference, I know some prefer to buy some chux sheets and cut up to use as a rag for cleaning your stoma, or others use wet toilet paper.. but personally I prefer baby wipes for a number of reasons. Firstly, they come in handy travel packs that can fit in your handbag; secondly, they are always wet and if you are out and about and don't always have access to water it is handy; thirdly, I am sensitive to how things feel on my skin and find baby wipes are much smoother where I find cloth rags are rough and scratchy. I use huggies shea butter baby wipes and have for years. I also sometimes (when at home) sit the wipes in a small container of warm water to remove a lot of the chemicals and to water it down. But most of the time I don't bother.

Stoma kit advice:
#12. Add scented garbage bags into your stoma kit
For the first couple of bag changes I was relying on using plasic shoppings bags to dispose of my stoma bag, and my husband wanted to try something when shopping one day and found these scented garbage bags that are small in size, and not only do these help to mask the smell of the contents of the bag when doing a bag change, but if you happen to be somewhere that there isn't an immediate place to dispose of in the bin and need to carry it in your handbag, it is discreet and you won't smell it. Just double bag it to ensure one layer doesn't pierce and the contents goes through your handbag.

#13. Invest in some sort of room spray
Have you ever emptied your bag when you're in a public rest room, and you feel so embarrassed by the smell coming from your cubicle that you hide and hope no one realises it was you when you emerge from the change room? Well if you have, you're not alone. So many times I was left feeling embarrassed that things were a bit too smelly and spraying toilet spray (if you're carrying a whole can around in your handbag) can not only be bulky but just as noisy... so I have the perfect pocket sized solution for you that was given to me as a Christmas gift last year, it is a thing called Room spray by scentsy and I have it in my handbag and in my stoma kit and promise there is no more embarrassing moments in public toilets! You can read my review of it here!

#14. Always have at least 3 of each item on hand in your portable kit
I have developed a bit of a rule when it comes to my stoma kit that I have with me in my handbag, is that I have at least 3 quantity of each item in my supply kit (excluding my scissors, stoma powder). So I have three stoma bags (in case I have more than 1 leak or accidentaly pierce a hole when cutting out the hole), I have a handful of adhesive wipes and barrier wipes, a handful of the brava elastic tape (banana wafers I call them), 3 mouldable rings and at least 6 of the scented garbage bags (in case I need to double bag, or a bag gets a hole in it). Here is a guide and checklist I wrote for when packing for a holiday with a stoma!

Storing your supplies at home:
#15. Have a cupboard within a reach of your toilet
I learnt very early on, how much of a hassle it is when you need to do a bag change and you're stuck sitting on the toilet home alone and can't reach your supplies. I was lucky that I have a large bathroom which could perfectly accomodate a cabinet that fits in between the toilet and the shower, which I have filled with stoma supplies. It also acts as a bench/table for me to lay out my supplies I need to use too. And to the untrained eye, guests just think it is a towel cupboard! But I do know not everyone can have a bathroom that is as accomodating, so you could look into getting a portable trolley with shelf space underneath and a flat table like top and you can wheel it into the bathroom when you need to use it, and when it's not in use you can store in the linen cupboard or wardrobe etc.

#16. Never wait until you're on the last handful or box of supplies before you re-order
Postage can always be unpredictable here in Australia, so I find it is always best to have a buffer when you need to re-order your next order of supplies. I find once you are almost at the last box to order your supplies that way you can allow for any delays in postage arriving, or if you have any unexpected bag leaks. 

Mental preparedness and a stoma:
#17. When doing a bag change play some music
I know sometimes I get rather flustered or overwhelmed when doing a bag change and especially found this was the case when I first had my surgery. I now have it as a part of my bag change routine that I have some music playing in the background which helps me to feel calm. Others might find that by playing a movie or tv show on their ipad/TV can be a pleasant distraction too.

#18. For me, my life truly began when I had my stoma surgery
I know that it is very easy to fall into the trap of thinking pre-surgery that your life is over and that you won't be able to live a normal life once you have a stoma. I know I was guilty of thinking this way, but my life honestly was given back to me when I had my stoma surgery. Before my stoma, I would be house bound because I had irritable bowel and always needed a toilet near by but also that going to the toilet and eating was a very, very painful experience. I can now enjoy going places, going out to dinner eating foods I once couldn't eat and I have more freedom now. I have control back over my life and my bowel was no longer defining me or what I did in my life. Although there is the chance of bag leaks when out and about and there is more involved when you go 'number 2' these are manageble and long term think of the how much life you were missing out on!

#19. If he truly loves you, having a stoma won't matter
I know sex and a stoma are two taboo subjects, but just because you have a stoma doesn't mean you won't ever be intimate with your partner or husband ever again, and if he loves you he can look past the stoma and not make you feel insecure about having one. Just because you have a stoma doesn't mean you're no longer considered sexy or attractive, you just now have a new adaptation to your body. If you feel insecure or conscious about your stoma during intimacy, there is lacy bag covers you can wear or put a towel over your stomach. But no one if they truly love you will make you feel ashamed for having something that saved your life.

#20. You can still swim when you have a stoma
When I first had my surgery, I was a bit saddened during summer when everyone was going to the beach and enjoying the water or swimming in the pools, I was worried because I had a stoma that this wasn't for me anymore. I was worried the bag would fall off during swimming and would be humiliating, but when I eventually realised I can go swimming I was so much more happier. While I admire those who can rock a stoma and a bikini, I don't quite have the confidence yet to do so (or have a bikini body) but I feel more safer and secure wearing a one piece that has a lining in the stomach area and I feel this gives me more confidence when swimming and isn't a noticable giveaway that I have a stoma. I also love doing water aerobics and find it is much enjoyable for me having a stoma than exercising and sweating and my bag becoming unstuck. 

[end of advice]

While, I have so many more tips to share than just 20, I thought that 20 would be enough for now and to help you get some tips at your fingertips. But if you have some other stoma hacks or tips you wish to share, feel free to comment these below!

Posted by: Talya AT 09:32 pm   |  Permalink   |  0 Comments  |  Email
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:
1. I somehow come up with the money for treatment (and was considering taking my friend's up on their offer of a fundraiser)
2. That my oncologist could apply and advocate on my behalf to the chemo manufacturer for compassionate grounds and see if they would approve all or part of the drug to be subsidised, or
3. That we try a more toxic and lengthy chemo that would require WEEKLY rounds of chemo over 52 weeks

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.

...........

Then .......

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?

Bugger!

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..

I entered the Heritage banking savvy blog competition earlier this month, in the hopes of trying to win a share of $11k to help alleviate some of the financial stress I have had recently, and needing your help!

Please click here to vote for Feeling Ostomistic, and be sure to click the confirmation email they send you (otherwise it won't count) and please ask your friends too, I need all the help I can get to win most voted, and if I indeed won it would mean so much.

 
Posted by: Talya AT 07:08 am   |  Permalink   |  0 Comments  |  Email
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?

 
Posted by: Talya AT 09:40 pm   |  Permalink   |  1 Comment  |  Email
Friday, July 24 2015

Today marks 5 years since I walked down the aisle and said "I do" to my incredible husband.

We have gone through so much these past 5 years, and when they say marriage is for sickness and in health they weren't kidding!

We have often been told that our love story is incredible and a true testament to how much you're willing to do when someone you love is sick or ill.

I met Russell (my spunky hubby) when I was 18 and this crazy and bubbly first year nursing student at uni. I needed a new laptop after my laptop decided to go for a bit of a swim during the March '09 Coffs Harbour floods... so I desperately needed a laptop to keep up with uni work.

I headed off to my local Wow sight and sound electronics superstore (which has since closed) and was on a mission to find a new laptop. I was greeted by this rather adorable and spunky computer salesman (and I could tell he was a bit nerdy too) so I pulled out all my charm and wit and tried to pretend to understand whatever computer mumbo jumbo he was going on about... it was so hard to focus when his eyes were so dreamy!

I was a poor uni student who didn't have contents insurance or much savings, so I needed to apply for finance for a laptop.

I spent the next couple of hours chatting with this salesman while we were doing the application, and he claims I was hitting on him (I say otherwise) but when I was rejected for finance I was about to head home and decided I would ask for his number but just like GE and flexirent, he too rejected me.

A couple of months passed and I had received a scholarship from uni and had some savings in place to attempt to buy the laptop again. So I tried to wait until a couple of months had passed before I returned to the store in the hopes he wouldn't remember me.

I had even gone to the troubles of dying my hair a red/purple colour and cutting it really short.

So the day came in July (3 months later) and I wondered into the computer department when I noticed the hot salesman. I tried to avoid his attention (I still felt the shame) and pretended to be busy looking at computers when he walked up and approached me. He smiled and said "It's Talya isn't it" and I felt my face turning red like a beetroot and in my head I was cursing with a few "f#$%, f$#%, f$#%"'s and really wished he hadn't of remembered me.

But I felt my face returning to normal and told him I was ready to buy that $2000 laptop I wanted and would need a new printer, MS office word and some extended warranty (I was every computer salesman's dream customer.. one that knew what they wanted). He started to get it all organised when he said to me "I am sorry for not getting your number that day, I have regretted it everyday since and just hoped I would see you again and not be shy to get your number".

So we got talking and he asked what I was up to since I saw him last, and I told him how I had been sick and waiting to have brain surgery in a month's time.

His response was "What superpower are your getting?" which was pretty typical for a nerd, and made me smile. I left with his number and a new computer and sat by my phone waiting for 5.30pm to come so I could call him.

We chatted for ages on the phone and organised to have a date the following sunday and chatted every night leading up to our date. It was like we had known each other forever, and I really felt that I could be myself and could trust him. There was that instant connection.

My friends gave me a bit of a hard time over the age gap. I was 18 and he was 29, but never has it felt like there was this gap between our ages. Sometimes I think he is a kid with the way he acts and carries on... but they do say it takes a long time for males to mature LOL.

So we went on our first date and we started dating and he really helped me come to terms with my upcoming brain surgery, which I was so scared about (and it was also going to be filmed for the RPA TV show).

Russ was there for me through my brain surgeries even though he barely knew me, and my dad really admired that in him and the way he took care of me when I was sick. So I was almost in the second month out of three for my hospital stay (I devleoped golden staph/MRSA in fection after one of my surgeries so was 2 month treatment to rid me of the infection) when he proposed.

We got married the following July, and everyone thought I was being married because I was pregnant (which I wasn't and yet to have a child) or that it wouldn't last because I am too young or that I was rushing into it.... what many failed to grasp was when you are faced with life or death you soon realise how crucial it is to make the most of everyday you are alive... I was doing just that, living life at its fullest and not missing out on any opportunities.

Our wedding was a beautiful, intimate and relaxing day. Aside from the usual family drama that comes with a wedding, the day was better than expected. The weather held off, and we got married on a headland and saw whales breaching in the background, it was truly magical!

Best of all the wedding (including our outfits) was under $2500! I wanted to save as much on the wedding so we could have the honeymoon we dreamed of!

Not long after our wedding I started a traineeship at a bank and learnt of my dad's terminal bowel cancer and that it was a rare inherited type known as FAP. I started screening and testing which was confirmed I too inherited this disease and started meeting with an array of doctors and specialists who wanted me to fastrack having a family (preferably via IVF to diagnose any embryo's affected with the gene).

It was hard being a newlywed and finding out that your dreams of having a family and that you're at a 80% risk of bowel cancer and prone to other tumours and cancers and will require 6 monthly surveilence.

It was a lot for us to come to terms with, but we got through it all and Russ was there for me.

2012

Dad lost his battle in March 2012, 3 days after my 21st birthday and Russ supported me through my grief.

Wow went into administration and Russ was made redundant in April, and he struggled to find work. I was able to pick up extra shifts but things were so difficult. I was finding my health especially my bowels deteriorating and I was in constant pain, but I had to keep working or we would have lost everything. I lived off of our credit cards to help make ends meat, as I was now needing to work enough to cover 2 incomes.

In September Russ thankfully got offered a job with a well established company coming to Coffs and it meant I could reduce my hours so I could finally go to Doctors appointments and catch up on colonoscopies.

After a few months on the waiting list to see a gynocologist, he booked me in for investigative surgery the following week as he discovered I had a large mass on one of my ovaries.

So I had a colonoscopy on Oct 8th and a laporoscopy, cystoscopy and hysteroscopy done on the 10th and it was discovered I had severe stage IV endometriosis with my surgeon saying "it was one of the worst cases he has seen in his career and in someone who was 21". I had a 15cm round enometrioma removed off of my left ovary along with the lining of the ovary, a couple of 7cm masses removed and a hundred 1 and 2cm sites removed as well.

Because of the extent of the damage I was placed in a medically induced menopause for 6 months and it was horrible. I was so sick and it took me a few months to recover from the surgery (sex was a no go, just hurt too much and still does) and I made the decision to stop working so I could recover and focus on my health. Russ was great about it and was so supportive and did everything to help me get better.

The week I finished up working (was Nov 24th) I found out the results from my colonoscopy, which showed the polyps in my bowel and rectum were in the early stages of becoming cancerous and I had an estimated 6 months to have my bowel removed before the cancer fully turned and spread. I was told I would need a permanent ileostomy.

2013

The start of 2013 involved a lot of appointments with stoma therapy nurses and surgeons to ensure I understood what was going to happen. I was really struggling to come to terms with the idea of having an ileostomy and knowing it will be a lifelong decision was rather daunting.

Heck, all I wanted to do was be a normal 21 year old and I felt that my health was taking a lot of normalcy away from me.

So the surgery was scheduled for April, which was cancelled just as they were about to put me under and rescheduled a month later at the main hospital (for safety reasons) so it meant another month of trying to process it.

Russ was incredible through all this, he came to all my appointments and even asked to be shown what to do to help me do a bag change and wanted to be involved. He was there when I had my surgery and helped me to get out of bed and walk around (which was so painful) but he also would come and visit me every day for the month I was in hospital even after he had been working all day and would take home clothes to wash and bring me new clothes the following day, he would even help me to shower.

And no matter what has happened, he has never seen me as gross or disgusting because I have a stoma and continues to be attacted to me and love me unconditionally.

In 2013, I also developed acute recurrent pancreatitis which meant a lot more visits in hospital

2014

This year wasn't as intense with as many surgeries but still had a lot of pancreatitis visits to hospital.

It was also discovered in July that year that there was a large abdominal mass, and was sent to Sydney for investigations and ordered to have PET scans, which after reviewing the October PET scan the doctors wanted me to repeat it in Feb 2015, so it was months of waiting to see what these tumours were.

2015

In Feb' I had the repeat PET scan which showed there was activity on my thyroid, breast, multiple tumours in my abdomen as well as the bigger tumour now completly blocking my left kidney. This meant being admitted into hospital for further tests which went over a period of 5 weeks. I was in hospital some 800kms away from home, and it was really hard for Russ being home working and he wasn't coping trying to come to terms with everything. But in true stubborn male form, he wouldn't talk about it all either.

He helped me through my thyroid surgery and I wasn't very well and he helped me to shower and take care of me. When he arrived the morning after my surgery I was still sedated with a ventillator attached and tubes hooked up everywhere, he didn't cope well seeing me how I was and when I saw how I looked even I was worried.

I just found out I will be needing brain surgery again, and still waiting to see if my desmoid tumours will shrink or if I will need chemo, but it has made all the difference knowing that no matter what happens my husband will be there to help me.

He works so hard to help support us while I haven't been able to return to the workforce and he is great at putting up with my mood swings, some days I am coping but other days I am a mess, and he doesn't judge me. He always knows the right things to say!

But in the 5 years I have been married and been chronically sick, I have learnt 5 very important things:

#1
it is okay to ask for help. This is something I have struggled with my entire life and I felt I needed to be so independant that I wouldn't ever ask for help. I realised that if I don't ask for help that others especially my husband wouldn't realise I need help.

#2
it is okay to be dependant on someone else. I always felt that I had to be my own person and felt so guilty when I first stopped working as I wasn't contributing and became financially dependant on my husband. But not just financially but emotionally and pysically too. There have been times where in all honesty I was too sick to shower, wash my hair or even wipe my own bum. But he has never made me feel pathetic or to be embarrased of needing his help. Heck he has even had to feed me after I had brain surgery. I don't feel there is anything left to be embarrased about around him, and he just takes everything about me in his stride and loves me no matter what.

#3
it is important to have things that you do on your own and don't always have to do everything together as a way to help you cope with illness and being sick. My husband loves his gaming and computers whereas I love my craft and being creative. We know to respect each other's space when we need to deal with things and I think it is a big part of us being able to get along so well (we have never had a fight).

#4
to have an intimate marriage doesn't necessarily mean it has to be intimate in a sexual way. I am thankful that I have an amazing husband who understands that while sex is enjoyable for him, it isn't something I enjoy doing due to the endometriosis and all the scar tissue. But he has never made me to feel bad for not wanting to have sex, and never forces this on me. Even before I got sick our relationship wasn't based solely on sex. We communicate a lot and have shared intimate moments through him taking care of me in times of sickness. Showing intimacy isn't just about sex.

#5
Any medical or life altering decisions is something that should be done together and not something that you have to only take on the burden on your own. When you get married everything you do becomes a team effort, and there have been times where I struggled to make a decision on my own and really valued Russ' input. I was really against having the surgery to have my stoma and collectomy and I didn't want the surgery but he insisted and told me he would rather have me alive than be dead. 

A huge thank you to my husband for helping me through the last 5 years, without you I don't believe I would have made it. You're my hero x

 
Posted by: Talya AT 01:00 am   |  Permalink   |  1 Comment  |  Email
Friday, July 17 2015

NB: This post contains the word 'shit'. If you'll be offended by the use of the word, please stop reading now.

Sometimes when things go horribly wrong, all you can do to keep yourself from breaking down and crying is to just laugh... this was a scenario I found myself in this week... and after all 'shit happens'.. in my case quite literally!

You see, I was invited to Melbourne this week for an exclusive bloggers workshop and was amongst the company of some of my blogging idols and heroes (even being in the same room let along being invited to the same event was pretty huge for me personally).

But what is one thing that can go wrong when you have a stoma... and something that you only ever think you're being overly paranoid about when in public?

........

........

If you guessed having a huge bag leak then you guessed correctly!

I was halfway through a 4 hour meeting/workshop when I quickly ducked off to the toilets only to realise that my bag had started leaking and was causing a bit of a mess. Of course the toilets were all the way down stairs and my stoma kit was all the way up in a seperate room (where everyone's bags and luggage was kept).. so I was sitting in the disabled toilets panicking thinking "shit, what the heck am I going to do?".

See I knew if I was in the toilet too long it might look suscpicious, or it might be even more suspicious if I ran upstairs grabbed my stoma kit, ran back downstairs and spent the next however long doing a bag change... so I realised where it was leaking and the bottom part of the bag that you close up was no longer sticking closed, so I emptied it, gave it a bit of a clean with some handtowels and ran upstairs.

I then did a bit of a McGyver trick and got the elastic tape (or I refer to them as banana wafers) and taped the bag closed.

I returned to my meeting and resumed my seat until the intermission (when everyone was mingling over wine, cheese and appetisers) I raced downstairs with my stoma kit and DID THE QUICKEST BAG CHANGE IN MY HISTORY OF HAVING A STOMA. No joke. It was the quickest change I have ever done, and thankfully no one noticed I had gone to the toilet for a second time in only a short period of time.

But it made me realise that I could have been better prepared and in hindsight I realise how, and I hope to share 5 ways to be better organised for when shit strikes...

5 ways to be better organised for a meeting/work when your stoma bag leaks

#1. Inside your handbag, briefcase or laptop bag have a seperate clutch or toiletry bag, that is dicreet and doesn't look like a toiletry bag and inside have enough for 1 bag change. So when you need to duck off to the toilet just grab your clutch and own how discreet you're being. Even if you don't have to take care of a bag leak, at least then you are prepared for when the moment strikes and you need to transform into a stoma bag changing Ninja!

#2. Always get to your meeting earlier than expected to so that you can allow time to go to the toilet and empty your bag, as nothing is more embarrassing than trying to excuse yourself from the meeting and as your bag is full and you apply pressure standing up your bag more or less bursts and it can be rather embarrassing (this has happened to me before when I was studying on campus).

#3. Always have a change of clothes or underwear with you. This one can be a bit hard if you only have a small handbag, thankfully I have a larger tote style handbag that is big enough to fit a change of clothes in. But if you have a locker at work or school/uni always have a spare change of clothes on hand, so that you are ready for when you have a bag leak and you don't have to go home in poo stained clothes, or sit in soiled clothes for the rest of your shift.
TIP: If the toilet in your bathroom at work has a cabinet under the sink, leave your spare change of clothes wrapped up in a plastic bag or within an enviro bag so that you don't have to walk all the way out to your desk to retrieve your clothes, it can help you be more discreet. The same can go for places where your meeting or workshop is at, leave your stoma kit/change of clothes in the cupboard as a precaution. Just remember to collect it before you leave!

#4. Always carry some scented garbage bags in your handbag and stoma kit, so that if you have to dispose of your bag and there isn't any bins around and you have no choice but to carry your soiled stoma bag in your handbag until you can find a bin to dispose of it in.. at least it will help mask the smell a bit. Just soon as you find a bin, dump that shit (LITERALLY).

#5. If you have had to leave your meeting and people notice you have been gone for a length of time and start commenting (and rather then saying what really happened, unless you want to) just pull out the period card... no one especially men will ask more questions and your female co-workers will just look at you with an empathetic tone that says "I totes get how you feel".

I really, really hope that no one finds themselves in any situation where you have a bag leak in public, let alone at work or in a meeting. But I hope that this guide helps you to be better prepared for the worst case scenario. And by having these measures in place, it will help you to be more calm and collected when the 'shit hits the fan' and also helps put your mind/anxiety at ease.

p.s have you ever found yourself in a situation where you had to do a bag change or had a bag leak and it was the worst possible timing? If you are brave, feel free to share your story in the comments below. You can always post 'anon.' by simply writing this instead of your name.

 
Posted by: Talya AT 07:47 am   |  Permalink   |  Email
Saturday, June 13 2015

There are some things in life that people shouldn't have to endure, but thankfully there are organisations out there to lend a much needed helping hand when you need it.

When I received my Cancer diagnosis earlier this year, Redkite were there for me and without their support I am certain my journey would have been completely different.

Redkite were there for me when I was alone in hospital for over a month in Sydney, 800km south of home.

Before I was referred to Redkite by the hospital social worker, I had seen Redkite on tv but never actually knew what it was that they did or how they helped others. Little did I realise that they were an amazing organisation helping young people aged 0-24 with Cancer and their families.

Here are 5 ways RedKite helped to make a difference:

#1 Red Duffle bag filled with goodies called a support pack
I remember when I was in hospital and got my diagnosis I was pretty devastated to say the least. I was anxious about what the future had in store for me, and I felt so lonely as my husband and family were 800km away.

When my youth support worker from the RPA Youth Team came in carrying this huge Redkite duffle overnight bag, I thought it was the coolest gift. Inside the bag was some amazing essentials that made the biggest difference to my hospital stay, and also since coming home.

There was:

  • a toiletry bag filled with toothbrushes and toothpaste and toiletries;
  • this super snuggly redkite blanket I take with me everywhere;
  • redkite travel coffee mug;
  • redkite drink bottle;
  • $50 coles gift card;
  • magazines;
  • visual arts diary with coloured pencils;
  • and there was so much more!

I take the blanket with me everywhere I go and snuggle up with it everyday, it is so soft and warm. I also use the bag heaps as well, often accompanies me to hospital.

#2 Financial assistance in the form of Coles or petrol gift cards
With all the travelling to and from Sydney this year, these petrol vouchers have made the biggest difference between whether or not I made it to the appointments. Let's just say things have been super tight this year with so much being spent on medical expenses (doctors, pathology, medications, radiology, hospital excess, surgery costs etc). The coles vouchers have made a huge difference too and has meant being able to buy groceries.

I am so appreciative that there is the support there when times are tough to help you manage financially.

#3 Education scholarships
If you're a young person with cancer and you're also studying or still in school, Redkite have education grants for up to $1000 that can help you with things like tutoring costs, course fees, stationery, or equipment.

These education grants can be a huge help if you're studying and help you to achieve your goals or ambitions. For more information click here.

#4 Dare to dream scholarships
These are national annual scholarships open to 15-24 year olds who've had cancer. The scholarships require you to enter a creative entry based on what your dream is and how having cancer has gotten in the way and how the scholarship can help you to make your dreams happen.

Applications close on the 13th of July. For more information visit here!

#5 counselling and help
One thing I have learnt from my cancer journey is just how lonely and distant you can become from those close to you, cancer can also be really isolating as well. There were times where speaking to Redkite really helped me to cope and learn new coping skills, but to also just have someone to talk to that isn't directly involved. It was hard talking to my family or husband about how I was feeling as I didn't want to burden them with my feelings and thoughts, so it was good talking to someone who understood.

Redkite can be contacted via 1800 REDKITE (1800 733 548), Monday to Friday, 9am – 7pm AEST or support@redkite.org.au.

Did you also know that they offer help and support to help you return to studies or the workforce? They can offer an individualised plan for 15-24 years who've had cancer and are wanting to return to studies or work. They work with you through setting a range of goals and a realistic plan to help you achieve them.

I would like to say a huge thank you to Redkite and for everyone reading this who donates and supports them. Their work that they do to help support young people like me who have had cancer is so important and has made the world of difference to my life. I will always be grateful for the support and help. 

Disclaimer: I wanted to write about my experiences with Redkite not because I was asked to or felt obliged to, but because I don't know how I could have gotten through this year without their support and help. I am sharing my experiences as they have made the world of difference to my cancer journey and I know first hand how important their work is. Please donate and support them so that they can continue helping young kids with cancer and their families.

 

 
Posted by: Talya AT 02:58 am   |  Permalink   |  Email
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.... 
When you are sick and have become familiar with a Doctor or Surgeon and have built up a relationship of trust with them, it is a no brainer that you would want them to do your operation/proceedure or to treat you. When you are admitted into a Public Hospital as a Private Patient, you can choose who your doctor will be for the duration of your care.

#2: By using my PHI in a Public Hospital, I am actually helping the hospital! 
Each Public Hospital has medicare funding, and when a patient is admitted to the hospital as a medicare (public) patient all the costs associated with their stay e.g. blood tests, doctor consults, theatre fees, medications, accomodation etc is all charged to the medicare allocated funding of that hospital. So when I am admitted as a Private Patient in a Public hospital, the hospital is paid more and directly from the health fund, meaning that when I have scans or need to stay overnight the money goes directly to the hospital and can help them to provide more services to patients. I have had public hospitals send me a letter of thanks before to show their appreciation of me using my PHI in their hospital. If it means I can help others, I am all for it!

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!
Have you ever had to stay in hospital for a number of days (or weeks) and have realised just how expensive it can be to hire out the tv? I think some hospitals charge between $6-$9 a day. So if you're in there for 5 days (for argument's sake) you could be looking at spending between $30-$45 JUST ON THE TV HIRE! I don't know about you, but I would much rather have the spare cash to get a drink or magazine from the gift shop. BUT if you use your PHI in a Public Hospital not only will you receive the TV hire for FREE, but you'll also get a FREE daily paper saving you up to $2 a day! C'mon who doesn't love a FREEBIE?

#4: You can sometimes get your own room.
In a Public Hospital the private/single rooms are pretty scarce and are given to patients on a clinical needs basis (whether public or private) but when there are patients who aren't requiring a single room, you can request to have your own private room (subject to availability) and is something you can discuss with the hospital. I don't always get my own single room, but sometimes I do for a couple of days, which is nice to just have some privacy and peace. This is different to the room settings of a Private Hospital, which most times I have stayed in the Private Hospital I have had my own private room with ensuite.

#5: When you need a surgery, you don't have to worry about long Public wait lists.
There have been times where for this reason, having PHI has saved my life. I am not saying that to be melo dramatic by any means, it is the truth. When I have gone to see my specialist and they have realised that I need to have a proceedure done quickly, they have booked me into the private hospitals on the next theatre lists. Examples of times have been:
a) I was experiencing really bad pains in my abdomen and pelvic area for months and when I got in to see a specialist he had me booked into theatre the following week to investigate what was wrong. I had a hysteroscopy, laporoscopy & cystoscopy and was diagnosed with stage IV Endometriosis. I had a 15cm round mass removed off of my left ovary with the lining of said ovary removed, a couple of 7cm masses removed from my uterus and hundreds of 1 & 2cm sites removed from elsewhere in my pelvic and vaginal area. My surgeon said it was one of the most extensive and worst cases he has seen in his career and for someone who was only 21, and to help me recover put me in a medically induced menopause for 6 months. I would have been waiting A LONG TIME on the public system to be seen, and who know's how much worse I could have been!
b) I was experiencing a lot of rectal bleeding and pain, and trying to eat food was not only an unpleasant and painful experience, but was resulting in really bad case of 'the runs' and there were times I felt I might not make it to a toilet. I saw my colorectal surgeon, who booked in for a colonoscopy that week at the Private Hospital and it was discovered that the polyps in my bowel had grown bigger and were starting to turn into cancer. So thankfully I had my bowel removed a couple of months later before it had time to fully turn into cancer and cause trouble.
c) Recently, I was diagnosed with Papiliary Thyroid Cancer and saw a specialist down at Sydney who is going to remove my thyroid (in a couple of weeks) and thankfully I had PHI insurance as the earliest he could do it on the public lists at the public hospital was August and that is still 4 months away! Instead, I am going to a new cancer hospital in sydney and I had control over where I had my surgery, what specialists and when I had it.

#6: You can sometimes get your glasses for FREE*
If you need glasses and can't afford the $400+ (or if you are saving for that holiday but need glasses and its an expense you don't want to part with), check with your Private Health Insrance extras cover as you may be entitled to a FREE or discounted pair of glasses. I get my glasses from Specsavers and sometimes they have a 2 for $199 special offer and have partnerships with different health funds that you can be entitled for the glasses for FREE or discounted and sometimes with no gap to pay either! Seriously, if optical is something you need it is something worth looking into as it can save you money! IMPORTANT: Check with your PHI first on what entitlements or extras cover you have before you purchase your glasses. They can also advise you on how you can claim your glasses under your cover.
*When I say FREE, some policies entitle you to claim all or most of your costs back to the PHI, check with your policy and provider.

#7: Speaking of extra's cover, how painful is a trip to the dentist on your wallet?
Just like optical extras cover, dental cover can help you save money too! It is important to speak with your insurance provider about what dental cover you are entitled to and how to claim before you get your tooth pulled so you know what to expect with any gap or out of pocket expenses.

#8: A ride in the Ambulance can become rather costly, but if you have PHI it can be FREE to you.
If you have PHI, your bill will be directly sent to your provider and depending on your policy and cover you might not have to pay anything additional. I remember once my sister had an epileptic seizure and my parents got sent a $900 bill. You never know when you might need it, but it is always best to make sure you have the cover there.

#9: Staying in a Private Hospital can be quite expensive if you aren't covered.
I was so shocked when I received a letter to show what was paid to the Private Hospital for a 3 week stay (was in excess of $21k) and thankfully was all covered by my policy. Except the excess of $250, which I have to pay twice a calendar year, my admissions don't cost me any extra and the level of comfort and care is really top notch. Don't get me started on the FOOD!! My first night I stayed there as a part of my 3 week stay (when I had my total colectomy), I had Roast Duck for dinner! Seriously something you would pay $40+ at a high end restaurant. Even the breakfast was gourmet! And I love having colonoscopies just so I can have their sandwiches (if only they sold them to the public I would eat there all the time), yes I have an obsession with their sandwiches, but when you have them you will understand just how good they are. Oh and did I mention FREE WIFI and FOXTEL in your rooms too, as well as private rooms with own little balcony (well the Private Hospitals I have been to have had WIFI and FOXTEL). It really is a great environment to recover in.

#10: Sometimes we need a little EXTRA help...
If you are needing additional services like psycology, braces (orthodontics) or speech therapy, these can sometimes be covered under your extra's package and can be claimable up to 75% back for some funds. These aren't the only extra's that you can be covered for there is a whole list of additional (and rather costly services) that you can claim back on. This is another way that you can save by having PHI. Always best to consult with your provider on your cover etc.

#11: You could be paying LESS in Taxes!
If you earn over a certain threshold and don't have PHI the Government may charge you more in taxes. There are also incentives given by the government to try and get more Australian's using PHI and offers rebates which are organised through your tax return. You will receive a financial statement at the end of the financial year ready to do your tax return.

#12: If you take your policy out before you turn 30, you'll avoid paying the LIFETIME LOADING FEE!
To try and incentivise more people taking out PHI earlier on in life (before you are 30), the Government has introduced a Lifetime Loading Fee which is a 2% additional fee applied for every year you are over 30 when you take out your cover. As explained on PrivateHealth.Gov, if you are 40 when you take out your PHI policy, you will pay 20% more than someone your age who took out their policy before they turned 30. The maximum loading is 70% and if you hold your policy for 10 continuous years it will be removed. The Lifetime loading fee will be calculated when you enquire about a policy, but best to do it before you turn 30 so you save in the long run! As I was 19 when I took out my cover, I don't need to worry. However my husband didn't take out a cover until after he was 31, so this applies to him.

My advice to you....
If you are chronically sick, or if you know in your future you will be needing operations, proceedures (like colonoscopies etc) or if you would benefit from claiming back on extra's such as optical, dental, chiro etc it would be best to look into how having PHI could actually be helping you in the long run. I know being sick is expensive, and there are some expenses we just can't avoid but I know I owe my life to having Private Health Insurance and I am so glad that I have it. I pay my premium fortnightly which is direct debited from my account (also get discounts applied for direct debit payments. But honestly, it is best to shop around and speak to the different providers about how they can help you and your health needs or speak to a comparison provider like Health Insurance Comparison who can help guide you to finding the right policy.

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.


 

 
Posted by: Talya AT 07:37 am   |  Permalink   |  Email
Tuesday, April 07 2015

When I was diagnosed with cancer earlier this year I did so much reading and research and read every pamplet I could find related to my cancer.

But there was one thing that I learnt about cancer that wasn't in any of the brochures or books that I read... there wasn't anything that would tell me how I should expect to cope or the stages of emotions I would experience.

Just like the 5 stages of grief, I found there were 5 stages to my cancer diagnosis and journey.

#1 shock and denial
I remember when my doctor told me that I had cancer, I had just gotten back from having some breast biopsies done when she came to tell me that my thyroid biopsies that were done two days earlier had come back positive for papiliary thyroid cancer. It was 5PM on a Friday afternoon and she just got the results as she was leaving for the day.

I remember the feeling of disbelief, that while I knew it was always a possibility it was only a 2% chance. I didn't think it would happen, especially at my age. 

I remember hoping that it was a mistake and that it was made in error.

It wasn't until I called my family and husband back home to tell them the news that it really sunk it. It hit me all of a sudden and I just couldn't stop crying

#2 pain and guilt
All I wanted to do was apologise to my husband and my family for them being upset and for them hurting over my news. I felt guilty to my core that I was having to put them through another family member with cancer especially with everyone still grieving and hurting from the loss of my dad to bowel cancer in 2012.

All I wanted to do was take away their pain and tell them that everything is okay.

I didn't want to tell them just how upset I am/was or that I wasn't coping as I felt if I was being strong enough for everyone to see then they won't be upset, I felt if I were to show just how much I am hurting that they wouldn't be able to cope.

It was like an endless circle.

#3 anger and bargaining
If I said that I wasn't angry or didn't experience anger you could call me a liar... but even though I have had my thyroid removed and all the cancer even a month later I am still feeling this anger. Well.. I don't know if it is more anger or irritability but I know that my emotions and reaction to the journey I have been on this year isn't quite finished.

I know there was bargaining (and still often happens) that I kind of put it out to the universe that if I were to win lotto I would donate to the charities that have helped me and then as good karma it should be enough that I have no more issues from this disease FAP that has caused havoc in my life and mysteriously get cured from all ailments... Then and only then, can I become a normal 24 year old... whatever normal is!
 

#4 depression, reflection and lonliness
Has anyone ever said that having cancer is actually really lonley? Well it is. It is like you have some sort of plague and people fear they will catch your cancer, so they best steer clear. You will lose friends, but you will also realise just who your real friends are.

You will have so much time reflecting on your life that it makes you so much more depressed. I turned the big 24 in March, and I always knew growing up that by the time I turned 24 I would have been married, had started a family, owned my own house, finished uni and had a great career... I turned 24 and all that I have out of my dreams of accomplishments is that I got married. I look back on the last 6 years since I left school and feel like an absolute failure. All I seemed to have mastered is being sick and being in hospital! Brain surgeries in 2009,  endometriosis surgery 2012, total collectomy 2013, pancreatitis 2013-present and thyroidectomy 2015.

And the next person to tell me 'go for a walk' or 'you really shouldn't complain your life isn't that bad' might just get their head bitten off. Depression (having had it since I was a child formally diagnosed when I was 12) isn't something that you can just walk off!

One thing I can certainly reflect on is how much I have lost because of FAP and cancer.

#5 acceptance and hope
It is a hard task to become fully accepting of your situation... like  fully accepting means you understand that you won't have a normal life, or accepting the fear that each new day might be your last. Acceptance is scary. Acceptance is the understanding that this is just how it needs to be, that there is a purpose for all this pain and suffering. I have always believed that my role in my life was to try and help others and make so much of a difference that I will save someone's life.. so I have accepted that I am going through all this torment with FAP, cancer and desmoid tumours because someone out there needs to hear my story whether it is complete strangers or if it is my two youngest sisters who will have their own FAP journey ahead of them.

I know it sounds cynical, but I have to  believe and accept that me going through all this serves a purpose....

The word hope is a noun, and it can be a pretty powerful word at times and gives off a strong desire to want things to happen as you want or expect them to. I learnt this week how upsetting it is when hope is taken away from you. I have been on a 3 month trial of temoxifen and sulindac to shrink my desmoid tumours invading my abdomen. I had my CT scan this week and realised the tumours haven't shrunk and are growing. I go back to Sydney next week and have it reassessed and hope (there's that word again) that we can find a treatment that works... I am mostly bummed because I was hoping for a miracle and that the tumours have gone away and that I could be experiencing a pain free day... I was so hopeful that this was almost the end of these tumours.

Don't forget that there is help out there...
CanTeen offers amazing support to 12-24 year olds living with cancer whether it is themselves, a sibling or a parent/caregiver who has a cancer diagnosis. They offer FREE counselling support both online and over the phone. Head to http://www.canteen.org.au/ to find out how they can help you or your family

RedKite is another amazing organisation that supports young people 12-24 with cancer and also offers financial assistance as well as counselling. To access counselling call 1800 REDKITE (1800 733 548).

Cancer Council also has a program called Cancer Connect where you can connect with someone who has experienced cancer and knows how you feel.  You can call 13 11 20 to find out the different support available to you.

HeadSpace is a not for profit organisation that helps 12-24 year olds with mental health issues. They have an online help available as well as help at local centres.

Beyond Blue 1300 224 636 is the number to call to chat with someone or they have web/online chat available too. Beyond Blue are a great resource to helping you understand your depression or anxiety and has a lot of information on their websites.

Kids Help Line 1800 551 800

Lifeline 13 11 14

 

 
Posted by: Talya AT 10:23 pm   |  Permalink   |  Email
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

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.

 
Posted by: Talya AT 09:14 pm   |  Permalink   |  2 Comments  |  Email
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.

 
Posted by: Talya AT 07:19 pm   |  Permalink   |  Email
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 too need a checklist of what supplies to pack, to help make things more enjoyable and easier this Christmas, then click here or on the image to download your FREE checklist.

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.

 
Posted by: Talya AT 01:48 am   |  Permalink   |  Email
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! 

Until then...

Ostomistically Yours,
Talya

 

Posted by: Talya AT 06:20 pm   |  Permalink   |  0 Comments  |  Email
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.

While I don't have the BRCA gene, I do have the FAP gene- a cancer causing inherited condition.

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:


My dad and I at my wedding 24.07.10

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..... 


My dad and siblings at my wedding

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:
*Anger- Why me?
*Denial- "I don't need this surgery, it will all be fine"
*Isolation- I just wanted to do it on my own without any help
*Fear- the fear that my life would be over and that I should just run away

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:


This was me hours after my surgery, (I just got out of recovery and was in ICU)

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.

Ostomistically Yours,
Talya

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.

 

 
Posted by: Talya AT 08:42 am   |  Permalink   |  Email
Wednesday, October 22 2014

Last night something unexpected happened.... Don't worry it wasn't anything bad, it was actually a changing moment for me...

And it all started with two small words that have so much meaning.

Those words were "Thank you!"

I have always felt that it was my mission or 'purpose' in my life to help someone else and make a difference to someone's life.

I would spend a lot of my free time (when I wasn't at school or work) during my High Schooling years volunteering and doing charitable work which then continued on through my time at Uni when I was studying to become Nurse. I felt that maybe this was how I was going to help make a difference.

When I started Feeling Ostomistic last year it wasn't for the attention, sympathy or pity through sharing my journey and the struggles faced, but was for a way that I can help support, encourage and empower someone who needed it most.

I knew how hard it was for me (who was 22 when I had my surgery to remove my entire large bowel) to find information and support that was aimed at a younger person as everything I found was more suited to the older population or geriatric care respectively.

So I realised that if I was struggling that there was bound to be others out there struggling as well.

I knew I wanted to help create social change and awareness that bowel cancer and issues affect younger people not just older people, but more wanting to advocate and make people aware of the importance of bowel cancer screening at any age (if you are showing signs that there is something different about your bowel habits).

But importantly, I wanted to help encourange people to not be embarrased about talking with their doctors about their bowel issues- which in our society is a big issue as people are just too afraid to find out or too embarrased to talk about it.

So last night I had a friend message me telling me how grateful she was of my blog and for making her feel encouraged and supported to go to her doctor to discuss problems she has been having and putting off.

She also wanted to make sure that I knew that it is important that I continue to share my voice and awareness- that my voice is being heard and change is starting to happen.

I didn't set out to do this blog for the grattification or praise, but it really was a moment of realisation for me that I am helping people and that my message is being heard and in return helping to save a life one blog post at a time!

If you have felt supported or encouraged from reading and following Feeling Ostomistic please let me know by commenting below (you can change your name to protect your privacy if you wish).

Ostomistically Yours,
Talya

 

 
Posted by: Talya AT 08:40 am   |  Permalink   |  Email
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?
If you have been following my story the last couple of months you may remember
me mentioning that Doctors had found a large mesenteric mass in my abdomen
and they requested I see specialists down in Sydney (600km south of where I live)
to get their opinion on what is a suspected 'Desmoid Tumor'.

I saw a specialist in Sydney in August on the 26th, and he said he needed to consult
with a multi-disciplinary team for their expertise who will meet within a fortnight from
the time of the consult.

Up until Last Tuesday I hadn't heard anything which I assumed 'no news is good news',
but my Doctor here in Coffs called me to let me know that at the first multi-disciplinary
meeting it was decided that it needed to go to an even higher meeting, where my
case was introduced and the Doctors came to a conclusion.

They thought it was best if I went for a PET scan ASAP as they think that the mass in my
abdomen could be a secondary tumor, that there could be cancer somewhere in
my body but not sure where. But also because they want to see if this mass in my
abdomen is benign or malignant and if it is a desmoid tumor they cannot biospy.

Normally I am pretty good at holding myself together and not letting things get
overwhelming or upsetting. But I was finding it so hard to not break down and
cry while on the phone to my Doctor. I was really glad I had my husband home
that day to help me deal with the news and the day ahead.

So by Wednesday I had an appointment for the following Monday Sep 29th,
at Lismore Hospital which is only a 2-3 hour drive north. I was lucky they could
fit me in so early especially as they only do the scans twice a week! And it was
more convenient for me to travel there rather then Newcastle or Sydney.

I know leading up to the scan I had no idea what to expect as I only knew two
people who had these scans being my late dad (who passed away March 2012)
and a friend I met the same age as me on a Canteen camp.

But I knew it was important if I blogged about this experience in the hopes of not
only sharing it with someone who may be wanting to know what to expect, but
more for my family and friends who are curious to know about what it was like.

What to expect when having a PET scan?

Now first things first, this scan is a non-evasive scan and doesn't hurt
(with exception of the canular)!

1) You will be advised of your fasting requirements such as the last time
you can eat or drink something, and also to advise how much water
you need to drink. It is important that you don't even chew chewing gum
as the sugar in this will effect the results of your scan.

2) When you are called through you will be asked to change into a
hospital gown with the exception of leaving on your underwear
and your pants. But you need to make sure your pants don't have
metal studs, zippers, buttons etc.
I knew my jeans had metal studs on the pockets, so I just brought a
pair of tracksuit pants with me to change into.

3) You will be weighed and your height measured to confirm the right
dosage of the radioactive glucose substance.

4) You will be ushered to a small, quiet room where there is a recliner
chair and it is here that a canula is inserted and the substance is
injected into your vein via an IV drip over 2 minutes.
This is painless and doesn't have any side effects or makes you feel
any different like what a CT contrast dye does.

5) You will be told to remain calm and relaxed over the next hour so
that your body can absorb the radioactive substance. They suggest
that you have a little nap, which I did and it went so quick.

6) Once the hour is up you are asked to go to the toilet before the
scan and then taken into the scanning room. You will be asked to
lay up on the scanner bed and instructed how to have your arms
and legs. Find a comfortable position as you will need to remain
still for around 30 minutes, which is the duration of the scan.
Surprisingly the scan was so quiet so I just had another nap.

7) After the whole body scan is complete you will be taken to
another small room where you will be brought a sandwich
and a drink and to sit for a while until instructed to leave.

So all up the process took around 2-3 hours, so just be sure to
accommodate up to 3 hours if you need to ask someone to
wait for you or to pick you up afterwards. Although you should
be able to drive yourself home if you prefer, but you would be
best to check with the Doctor or technician.

You also will be advised to avoid contact with anyone who is
pregnant, breastfeeding, a baby, child or very ill for
a few hours afterwards as you are still considered to be radioactive,
so avoid being in close proximity to anyone including hugging.
You will also be told what time you are 'radioactive until'.

So I hope that this is informative and can help you to prepare
or understand what to expect when having a PET scan.

Ostomistically Yours,
Talya x

 

 
Posted by: Talya AT 08:29 pm   |  Permalink   |  2 Comments  |  Email
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.... 
Those four words "we've found a mass" are still replaying in my mind and honestly I didn't take the news very well.

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.

Ostomistically yours,
        Talya  xx

 
Posted by: Talya AT 01:32 am   |  Permalink   |  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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