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Feeling Ostomistic
Thursday, December 14 2017

If you have just read part 1, You will have learned: how heat can affect those who are vulnerable or sick or with an ostomy; what are the different heat related illnesses to look out for; what are the symptoms of the heat illnesses; and lastly, how/what to do under each situation.

NB: It is important to remember that this is just an informative guide only and I am not a nurse or doctor, and any individual circumstances or advisement is based on each person's own circumstances. If you have questions to follow it up with your team.

So in this Part 2, I will be sharing tips to help you be more prepared for the weekend

But just in case you haven't read part 1 yet, basically here in Australia we are preparing for an extreme heat wave which will occur over the weekend and most of Australia will be experiencing temps of 35'c-45'c+.


Image from Higgins Storm Chasing, providing a visual of just how much of Australia is to be affected

I have an ostomy, ileostomy to be exact, I also have other chronic co-morbid health issues/illnesses and take various medications which put me at higher risk of sun related illnesses.

I started writing this post a couple of years ago but never finished it in time for it to be relevant, so I am finishing it ahead of this weekend, I only hope it might help someone to be more informed of their own circumstances and to know what to do.

To read part 1, click here:

Also keep in mind anyone you know who might be at a higher risk of suffering with the heat, it could be a neighbour who is elderly and lives alone, or it could be checking in on a friend, just to make sure they are doing okay - as the heat can affect many in different ways.

Part 2: Being prepared and tips to surviving the heatwave

I thought it might just be helpful to share different tips to help you get through the heatwave, if you have your own be sure to comment.

Tip #1: Never leave kids or pets alone in a car
I know this hopefully is common knowledge, but you'd be surprised how many times I have been at the shops and found pets or kids sitting in the car while their parents or owners shopped. Even with the windows down or leaving the car running with the air conditioning going, the car is still going to be hot.

Even on a "cool day" this is a no-no. While the temp outside might only be 25'c the temps inside that car can be 55-70'c! It can rise 40 degrees hotter than the outside temperature, so imagine how hot it would be on a day during a heatwave.... scary to think. The damage it can do is increase a child's body temperature, which could lead to brain damage... not to mention what it does to pets too. 

I have seen videos and experiements where a chef has cooked a lamb while inside a car, to a vet documenting what it is like in a car. I do not suggest trying it out yourself, there are plenty of videos and information out on the interwebs about the consequences to leaving pets or kids in cars, which can be deadly.

A child left in a parked car under those conditions for even a few minutes can very quickly become distressed, dehydrated and can die from organ failure. If you see anything, you need to act quickly. If you wait, it can be too late.

What to do if you see a child or pet in the car?
The NRMA advises: You must make a judgment call as to whether it is a life and death situation and you would need to break a window yourself and call an ambulance, or whether you should call 000 and ask for police, who will get there as urgently as they can (and will break the window themselves) and they will call an ambulance.

If the child is clearly distressed, do not wait for help. Instead, break a window and remove the child from the vehicle until help arrives. If you break a window, and the child is simply asleep and it turns out not to be an emergency, it is possible that you could be required to pay for the window.

You don't have to be an NRMA member to call for roadside assistance if it is in less urgent circumstances. Because of the grave danger involved, the NRMA drops everything to respond immediately to calls where a child is locked in a car.

For pets: Visit Just 6 minutes, a site by the RSPCA which outlines that it takes only 6 minutes of a dog left in a car to die. Here is a factsheet of pet first aid if you can rescue the pet from the car and can wait until the owner arrives. Call 000 immediately and ask what you're legalities are if you can smash the window. But some states you can receive a $200k fine and imprisonment for leaving a pet in the car.

Tip #2: Have plenty of water
Water is important for helping you to stay rehydrated, make sure you have plenty to drink. Consider taking a bottle of water to someone who is experiencing homlessness, they might not have adequate access to water, it might not be a lot but it is a nice gesuture to look out for someone who is at high risk of heat related illnesses.

You should drink two to three litres of water a day even if you don't feel thirsty. 

Tip #3: Have electrolyte replacement on hand
If you're like me and have an ostomy and need to replenish lost electrolytes, make sure you have enough to get you through the weekend. I try and have a 1L bottle of sports drinks, I get the powder and mix in the water, and have a few of these made up in my fridge ready. You can consult with your Nurse or dietician over what is the best option for you to replace your lost electrolytes. Due to having no large bowel I am at risk of dehydration, which is worse in Summer and extreme heat. Salts and minerals are vital for your body's functionality.

Also important if you don't have an ostomy but have gastro or vomiting bugs during a heatwave too. Hydrolyte is an electrolyte drink which also comes in the form of icypoles too and can be found from most supermarkets or chemists.

Tip #4: Stay cool
This is important, especially if you struggle with body regulation, you need to find somewhere cool. Air conditioned is preferable, if your home isn't air conditioned maybe ask a neighbour or friend if you could join them, otherwise hit the shops and enjoy their air condiitioning too. If you don't have air conditioning find somewhere cool in your house and put on a fan. You could go to the library, cinema, art galleries, cafes too.

If you are outdoors try and find a nice shaded tree and be sure to keep hydrated.

You could also use one of those battery operated hand held mist fans Kmart have them for $5-$10, or a spray bottle with water in it to help.

A cool tip, get it (lol) I have one of my heatpacks in a zip lock bag and in my freezer. This turns into a cold pack and means I have a cool option too. I get my heatpack/cold packs from Chatterbox City.

Tip #5: Keep plenty of drinks in the fridge prepared
Fill as many bottles as possible and put in the fridge, some could be cordials or soft drinks, but limit the alcohol. Plenty of cool drinks will help keep you cool

Tip #6: Have ice packs or blocks in the freezer
Firstly, ice blocks or icypoles are a great way to keeping cool and hydrated in Summer. You could also freeze water bottles so they last cooler for longer, if you are going to the beach. Ice packs are good to keep on hand in case of first aid and if you need to aid in cooling someone down. See part 1 for how this works.

Tip #7: Keep blinds drawn
This will help keep your house cooler, even if you have air conditioning going, keeping the blinds drawn will help your system to not have to work overtime too. But if you don't have air conditioning it will still help if you have a fan too.

Tip #8: Wear light summery clothing
Avoid wearing lots of layers and wear something light and breathable, this will not only help in keeping your body cool but will aid in your body trying to regulate it's temperature. Avoid wearing dark or black coloured clothing. Clothing light in colour reflects the light better.

Tip #9: Be sun smart and sun safe
Slip, slop, slap. Sunscreen, a hat, sunnies and a shirt are not only safe ways of being out in the sun but also help in preventing melanoma. If you must be out in the sun keep out of the sun as much as possible - during a heatwave you should be minimising your sun exposure. Seek out shade.

Tip #10: Reapply sunscreen often
Even if it is overcast, you can still get burnt and when you're swimming sunscreen washes or rubs off after time, so everytime you come out of the water or as often as indicated on the bottle: reapply. Also if you do happen to get burnt, have some cooling after sun gel in the fridge to help your skin cool down, aloe vera fresh from the garden helps too.

Tip #11: Don't lie in the sun exposed
If you're planning on laying on the beach and reading a book, chances are you could fall asleep and get sun stroke. A heatwave isn't the right time to do this, seek out shelter or shade or plan your trip to the beach on a day where the weather isn't as hot.

Tip #12: in case of a blackout
It is important having items such as a torch, a battery operated fan, extra batteries, bottled water and first aid kit on hand in case of a power outage. Also, wrap medications that need to be refrigerated (such as insulin pens) in foil or place in an heat repellent container with some ice in case of power failure.

Tip #13: Open the house at night or evening if a cool change is forecast
This is self explanatory, but this might help to keep the house cool of a night or the next day if air gets circulating around, remember to draw the blinds early in the morning to keep the heat out and the cool in.

Tip #14: Pets or wildlife
Pets can be particularly vulnerable to the heat. Make sure they have shade and plenty of cool water to last the day. If you live near the bush, consider leaving a bowl or bucket of water out for any Koalas, kangaroos, dogs or cats or other animals that might want water.

Fill a kids clam pool sand pit thing with water and put in the shade and let your dog cool down when he needs to.

Tip #15: Keep your body cool but not freezing
It is important to remember that while you want to cool your body down that you aren't changing your temperature too quickly or suddenly. You could go swimming or lay in a bath if you run the cool water before the hot to cool down. You could set the sprinkler up or a water slide, brings back good memories being a kid and having a tarp and sprinkler on the yard and having a good old time. Just remember to be sun smart too!

Tip #16: Check in on those at risk
Keep a close eye on those most at risk, like the sick, the elderly and the young (a full list of vulnerable at risk perspns is in part 1). Do this at an arranged time at least twice a day. The heat affects everyone differently and adversely, be sure to make sure they have plenty to eat.

Tip #17: Watermelon
Would it be an Aussie summer without watermelon? I love watermelon, it is full of water plus it is a good source of electrolytes too! Make it fun by using cookie cutters to make fun shapes too. If you get sick of water, maybe have some watermelon to help replenish you. Your body will thank you too, it is oozing with benefits too. 

Tip #18: Foods
Enjoy delicious salads and cold meats for dinner, while a hot meal is delicious, it will only make you sweat and feel hot cooking away in the kitchen. But with the heatwave foods like strawberries, cucumbers, watermelons, celery, tomatoes and broccoli and lettuce contain water, which can be benefitial towards your water intake.

Tip #19: Wearing a stoma cover
I get rashes on my stomach under where my bag sits against my skin, especially when it is hot. I found last year if I wore an ostomy pouch bag cover it helped to relieve the rash as it wasn't plastic on my skin and it worked as a barrier between my skin and bag. If you find you get rashes too maybe speak to your nurse as she might have some bag covers or be able to point you in the right direction to where online you can find them. I had a friend make me some. Theres heaps of options if you google too.


My cover a friend made for me

Tip #20: Mashmallows
I find when I am dehydrated or in Summer my output is more watery. It is hard sometimes to keep my hydration up when this happens, but I have some marshmallows and immodium to help thicken my output. Sometimes a watery output is a sign of a blockage too, be mindful of this as you may need medical attention.

☟ ☟ ☟ ☟ ☟ ☟

I hope that you have found these 2 posts helpful on how to prepare for a heatwave with an ostomy, I know they have been long posts but there was a lot of information I needed to share with you. These posts do not replace the information of that of your nurse or doctors, it is a guide to help inform you of the risks and tips on getting through the heatwave safely.

Please be sure to seek medical attention if you require it and don't delay, heat related illnesses are deadly serious.

More Links through my research:
- On how medication/heat affects you:
- Heat related illnesses and what to do: NSW health
- SES heatwave fact sheet
- SES heatwave tips
- ABC heatwave tips
- Know your risk
- Heat and children: NSW health
- Cancer Council Australia slip slop slap seek
- Just 6 minutes pet first aid
- NRMA children in a hot car

If you have another tip, be sure to let me know in the comments below. To read part 1, click here

Posted by: Talya AT 10:15 am   |  Permalink   |  0 Comments  |  Email
Tuesday, June 13 2017

 

“Life is 10% of what happens to us and 90% how we react to it” 
- Dennis P. Kimbro

Facebook memories can sometimes be a double edged sword. On one side it shows you the silly and mundane status updates that have you questioning what on earth you were thinking way back when. Then there are the moments that your life changed in an instant in what feels like a lifetime ago, but was in fact a year to date. It has the power of instilling those emotions you felt at that time and can feel like a sharp stab at one’s own heart.

Sometimes it can be bittersweet and reminds me of the little ‘wins’ in life: like the time my husband got his P’s after 20 years as a learner driver and I felt immense pride for him but cried tears of relief that I now can take a step back and not be the sole driver; or that time that I drove a 4 hour round trip to spend Good Friday with my family (having had chemo the day prior) and felt so sick, but I was able to hold my nephew for the first time since his birth and he smiled and laughed with me and in that moment I felt an overwhelming sense of love and happiness, as if all is right in the world, for that boy has the most infectious smile that makes you feel so happy.

1 year = 12 months = 365 days = too many minutes and seconds to be happy

Today’s memory however, was that it was 12 months to the day that I was told chemotherapy was stopped, that I had exhausted all other options and was admitted to hospital under palliative care… I was given 12 months to live.

I remember that day clearly, I had turned up to my chemo appointment thinking it was a normal chemo day. I drove myself to the hospital and had expected to drive myself home; instead I called hubby and told him I needed him.

I remember feeling so terrified, I was scared now having been given a timeframe and I didn’t know what to make of any of it. What if I did life wrong, what or how was the best way to spend each minute of the day, was there even a right way? I didn't know what to do, I just knew I wasn't done trying just yet.

But amongst all the fear felt, I also felt so much guilt. I felt that I had failed my husband, my family, my friends and myself.

Most of all I wasn’t ready for the end.

I remember crying so much that day just being held and consoled by my husband, we cried together and despite no words being spoken we knew what the other was feeling.

So I started writing my bucket list and planning how I wanted to spend the next year, particularly, my final moments. I began organising my funeral and how I wanted my life to be celebrated. I tried to include my loved ones in organising/talking about my funeral and joining me on bucketlist experiences in the hopes that it helped them somehow.

But one thing I knew for sure, was that I was determined to spend the next year living life as fiercely and to the fullest as possible. 

Choosing my legacy and how I want people to think of me:

I wanted people to remember me not for the hardships I faced but for how I chose to face life, I wanted people to not pity me but to think “hey that is one strong, badass and positive chick”. I didn’t want the next 12 months of health issues/decline and struggles to define me, I was determined to try and help others.

I feel like the last 12 months have been incredibly exhausting, I feel like not only have I struggled with daily challenges but that I also have lived the most I possibly could have too.

In the face of adversity and a time I should have been selfishly focusing on myself, I started a magazine for other young people with a stoma that has been well received all round but also what I hope will be my legacy.

But my determination to try and help others didn’t end there:

I have tried to empower people to make better choices through learning from my mistakes, I have tried to challenge people to think about how they talk to or treat someone who is chronically or terminally unwell, I have tried to help others feel less alone in sharing my story openly and I have tried to encourage others to live their life as they see fit.

The last couple of weeks I have been struggling with depression and felt myself in a downward spiral. I have been told I am dying too slowly, that I am a burden on Russ, that I am a fraud because I am not on my deathbed now; all in a matter of weeks. 

I am feeling a lot of self loathing (and as a failure) as I had hoped a year on our finances would be in a better state, that things would be less messy and more manageable for Russ to takeover. Yet, despite all the frugal efforts made, I still don’t feel things are better 12 months on. I had also hoped to be prepared enough and finish my funeral preparations by now too.... but things need a lot more working done. I also hoped to have saved/paid off my funeral too (I don’t know who I was kidding). 

I just regret not having life insurance so much, it could have made life a heck of a lot easier.

So please if you can learn anything from this story is to never just take one opinion/advice from a person who is “an authorised representative”, to always get another opinion. 

I HAD life insurance and when I stopped working I was told that my life insurance would be void if I had no EMPLOYER contributions made, that I couldn’t just make them (the contributions) myself. My insurance lapsed as a result. I later spoke to them again (6 or so months later) only to be told that the information I was told was incorrect and I could have made contributions all along and I would still now be covered or be receiving the benefits owed to me.

That one person who incorrectly advised my rights has caused so much stress and inconvenience to my life and while I have been told that person no longer works there I have been left to live with this mistake $600,000 poorer… I didn’t question the advice as it had come from someone at the company, that I assumed them to be right. 

If only someone had of told me to get a second opinion. 

Same went for my thyroid cancer, a respected endocrinologist told me there was nothing wrong with my thyroid and a week later I was in Sydney having thyroid biopsies done as it was actually cancerous, sadly in “the sticks” there isn’t always a second opinion you can get but I am lucky that I sought one in Sydney. Or that time I was told I was diabetic from a Doctor without any testing being done and started medication, it didn’t feel right and made me sick, I saw a different doctor a month later and was diagnosed with anaemia not diabetes. 

Moral to the story, if it doesn’t sound/feel right always get a second opinion. 

Your best teacher is your last mistake

Though all of these moments impacted on my life, I learned valuable lessons about myself or others around me.

If you do happen to make a mistake along the way just learn from it, don’t be too hard on yourself and be forgiving - you wouldn’t really be living if you didn’t make mistakes. Just learn from them and make yourself more informed for next time.
"A mistake is doing something once, the second time it is considered a choice."

So here is to time and life, may we all take everyday as it comes and try to stop every now and then to take it all in, or smell the roses as some say. Life is so precious and I am just grateful to still be here 12 months on and living by my promise of trying to help others. So learn from my life if not for helping yourself, help someone you know.

Time and life is something that can go by so quickly and before long it is a year or 5 years later, so it is important that you make the most out of it. To be cliche and all, it really can be taken away at any time. I know I am cherishing everyday I have; as I know age, time and life are all a privilege.

Always remember:

“Life always offers you a second chance… it is called Tomorrow!”

Posted by: Talya AT 01:36 pm   |  Permalink   |  0 Comments  |  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
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
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
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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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