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Feeling Ostomistic
Tuesday, November 17 2015

Recently, my 18 year old brother graduated from year 12 and in the lead up to his final year 12 exams I gave him a piece of advice that I wish someone had of told me when I was undergoing my HSC in 2008.

I told my brother that no matter what his final marks were, that they didn't dictate his future or his ability to succeed. I told him that I loved him and all I expect is that he do his best and be happy with how hard he worked.

I wished someone had of told me that I was worth something even if I didn't get that perfect 83 that I wanted... or that someone told me that I wasn't a failure because I didn't get that mark. I felt so much pressure to get the perfect grades and that if I didn't go to university my life wouldn't amount to much without that university degree and a huge debt.


Me in my senior years of school

While my HSC marks were great (lowest exam mark was a 79 for Extension History *cough* nerd *cough*) because of my grade my university admission mark was only a 55.5, which I only JUST scraped into uni for Nursing (which I had to cease studying due to health reasons) but I until recently have felt like a failure because I am 24 and have no solid career or university degree.

But it took me telling my brother that his life won't be over if he doesn't get into uni, to realise that my life was never over when I didn't get into the course I wanted or because I didn't finish that university degree.. instead I have had a pretty interesting life the last few years and I have done my best to grab life by the metaphorical balls and to make the most of it.

I am a big believer that when one door closes another door opens, and that opportunities exist everywhere you just have to be looking for them!

I always wanted to have a career in health helping people and I thought that it was because I could do so through nursing. But I have since learnt that I can achieve this through my blog and writings and that I want to be a social worker and counsellor. It was through my nursing studies that I realised I was more interested in the holistic picture and the social aspect of my studies and that I can make a difference in other ways. Then I started my blog when I needed to have my bowel removed and an ileostomy, when I couldn't find ANY resources pertaining to life of a young female with a stoma, and so began Feeling Ostomistic.

This wasn't the only opportunity I have found by chance.

I know I don't talk about it a lot, being a taboo subject and all... but I suffer from Borderline Personality Disorder and as my way of coping (in a healthy way) I turn to crafts and keeping my hands and in turn my mind busy so that I can distract myself... this had always been sufficient in helping me to cope. That was until I was diagnosed with FAP and dealing with my dad's terminal bowel cancer when I realised I needed something more dynamic.

So I turned my coping mechanisim of a creative outlet into a cottage enterprise Made With Love Cards And Crafts, where it quickly turned into a busy little handmade business that became respected not only around Australia but globally too (with products being sent to Ellen Degeneres!!). I had eventually gotten so many orders I had waiting lists and had to turn clients away as I just couldn't physically do all the work. But then my health got the better of me and 18 months ago I stopped taking on orders as it got too hard being in hospital. I sometimes do the occasional card for family or friends but haven't formally taken orders for a while...

But because I now had no creative outlet and was spending weeks and months in hospital, I quickly found myself feeling down and in a bad place mentally. I knew I had to find another creative outlet and venture that could be fulfilling of my creative needs, that was busy and kept me distracted, and also was mobile so that it could come to hospital with me and didn't require being made or supplies.

Then a lightbulb moment happened, and I decided to invest in myself and start Goding Consulting where I offered graphic design (logo, flyers, business cards) and assistance with setting up social media pages. This was a business that I had the skills for, and being entirely based on my computer meant it was 100% mobile and could be taken to hospital with me... 

In fact it was so mobile that it followed me to Sydney for 5 weeks during my hospital stay and RPA media called me "a hospital bed entrepreneur". I have taken a break since October 2015 to focus on my health more.

So 7 years on since my HSC my marks mean nothing to me and hasn't dictated the path I have created for myself.

My marks didn't dictate my self worth or my lack of future accomplishments, it just made me determined to look for my own opportunities and make the most of what life gives me.

So to all those students whom like my brother are awaiting their final marks, I hope that this message helps give you perspective that there is life after year 12 and there are plenty of paths you can take... just be mindful of the opportunities that present themselves as they might not always be obvious and will need to be found... but they are out there!

 
Posted by: Talya AT 12:26 am   |  Permalink   |  0 Comments  |  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
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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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