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Feeling Ostomistic
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


~  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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