Survivorship (2012 and beyond)

Author: Pamela Bou Sejean

I could talk lots about this new term that is starting to emerge in the cancer arena, I will try and keep it as short as possible but survivorship is something else that I am also passionate about. And I hope this post can help other people going through the same thing by relating to it.

Returning back to "normal" life and finding an immediate happiness when treatment stops is difficult. I have spoken to and met many others and we have all struggled during this time, some more than others. We don't know what "normal" life is anymore because having cancer is a life-changing experience!

Firstly there are of course the physical effects of treatment - extreme fatigue, low energy levels and an array of other changes to the body. For example I had some problems with my digestive system and gut and about 5 months after being told I was in remission I was rushed into the emergency department after a scary episode. I was in hospital for 4 days. Despite my "remission" status, I was still very unwell (and at this time people are still asking you questions like if you're back to work yet)! 

Emotionally there is also alot to deal with. For me, having cancer wasn't a short temporary state of life. For more than 2 years cancer was my life and there were many emotions to deal with and it was difficult to just "snap out" of that. Apart from the fact that you begin hearing about friends and people who you met who lost their battle to the disease, there are many other negative feelings that surface too.

Survivors guilt: Why did others die or have to continue the harsh treatments and I made it through? Why did this happen to me? Guilt for putting my family through worry and stress, feeling useless and a burden to everyone around me.

Isolation: Socially I felt isolated, everyone else was continuing on with their lives - advancing in their careers, working, getting married, buying houses, having babies, going to dinners and parties etc. And here I was, 20 something years old stuck in a strange limbo where I wasn't well enough to get back into life, stuck at home, not working, still very much dependant on those around me. 

Lost: I had no sense of direction, I had to reassess everything again in my life. I was still so sick and wasn't sure what I would ever be capable of. 

Sense of loss: Naturally I felt like I lost precious time and years of my life.

Memory loss: Also known as "chemo brain", research is starting to show that chemotherapy can affect cognitive function and it generally gets better in time. To begin with I had no idea what was going on, I couldn't remember anything and I was generally slower at processing information! 

Frustrated: That no one could really understand what I was going through.

Confused: Hearing about different diets and foods that are cancer causing and cancer fighting. I had a constant battle of thoughts and often felt guilty when I ate because I was never sure if I was doing the right thing.

Self esteem and confidence: My hair was growing back in patches and I was painfully thin after losing 15kg in weight after the transplant (I was not that big to begin with). None of my clothes fitted me anymore (and I hadn't been working for years so I couldn't afford to splurge out on a new wardrobe, and anyway I hated the way everything looked on me). I was just skin and bone. And I cringed when people would say things like, "I wish I had your problem and had to gain weight". One time a man at the gym asked me why I was there and if he could have what I was having to lose weight (for some reason people think the only reason to go to gym is for weight loss rather than fitness). I couldn't help but be a bit cheeky and answer, "You probably don't want what I had - cancer and a transplant just does wonders for weight loss"! And many people think its OK to call you skinny, thin and so on...people who are extra thin can have the same self esteem issues as overweight people, it's nasty to call them "fat" so why is it OK to comment that we are too skinny?! And it wasn't just confidence lost in my appearance but also a loss of confidence of my body's abilities, I was never sure what I was capable of doing anymore.

Fear: Becoming worried and anxious that the cancer may return. Worried and unsure what my body was capable of handling - unable to commit to doing simple things like going for a walk with a friend in fear that I may collapse from exhaustion (not understanding my limits)

For any patients reading this, please don't feel disheartened but just know that if you experience these feelings that it is normal and there is help out there. Be patient and in time things will start to feel good again, you won't even realise as it's happening because it is a progressive thing. You will get there in the end!

Survivorship nurse and gaining back control

There's plenty more but I just wanted to try and give a basic overview of some of the things cancer patients go through. It wasn't until I saw a cancer survivorship nurse at the Geelong hospital that I finally started to gain back some control. She helped me in many ways, including referring me to another local program called Strive 2 Thrive. It was a fantastic 3 month exercise based program especially for people who had undergone cancer treatment. Each person in my group had an individual program written up and we were able to do our exercises in a safe and comfortable environment, we supported one another and made some great friends. We also had many guest speakers who gave us information about all the things we needed to know to help us live well and get back into life. I started in July 2011 and I have been consistently going to the gym 3 times a week since then. It has helped with my recovery immensely (a note to other patients: try and find an exercise physiologist (EP) to help with your exercising versus joining a standard gym with standard trainers. EP's are trained to work with people with different health conditions.) 

The survivorship program helped me so much and since then I have joined a hospital committee and done some work with the survivorship program, including sharing my story during presentations with my nurse at different forums. It's very rewarding. I'm happy to be a part of the whole survivorship scene and hopefully help shape it to make sure it continues to grow and help more people. 

And as for Ur the Cure, well it was during this time that a thought randomly popped into my head while I was praying/meditating late one night (call it what you want)! Read the next post for more!