Nothing New or Interesting

Guest Post by Steve Frangakis

For well, about a year now, I have been looking for articles, testimonials, anything, to guide me in some way in my role as a supporter to Lynsey. Aside from what I learned at the YACC conference, there has been very little. From time to time either Lynsey or I will come across something, start reading, and find nothing… new or interesting. The truth is, there was really nothing new or interesting out there to help me to begin with.

Honestly, a year ago, the one thing I knew about supporting someone with cancer and on chemotherapy was to wash my hands a lot.

And it’s not just me; it’s not just the direct supporters who have to feel their way around in the dark with this disease. It’s everyone who comes into contact with someone who has cancer. No one knows what to say, what to offer, or what to do in general.

“Well, you look great!” seems to be a common response to Lyns in particular. I can’t tell you from looking at Lyns what it feels like to have cancer, but I can tell when she wants to hit someone with a baseball bat. Pain, suffering, and weakness may not show, but they’re still there. (And don’t take the baseball bat thing personally. It’s really not your fault that you don’t know what to say. Again, without any sort of guidance, no one really does.)

I think one of the great things that I experienced at the YACC conference was the ability to talk openly about cancer with people other than Lyns. As she alluded to in her last post, we don’t really get to do that with anyone else we know. Again, not your fault. From what I gathered at the conference, it seems to be the ‘norm’.

As the world has seen time and time again, the ‘norm’ can change, but it has to be changed. That is why I stand behind Lynsey and Mary’s challenge to embrace vulnerability and be authentic with each other. I believe open, honest, and authentic conversation will be the only way for everyone involved to offer the thoughts, help and support that we all know they intend to. And not just to Lynsey, to each other.

Like I have said, there’s nothing out there that is going to tell you what to say or do. You can only learn that from expressing yourself authentically, hearing others do the same, and growing from that.

Lyns can’t do it alone, Mary can’t do it alone, I can’t do it alone, and you can’t do it alone. Please, let all of us help each other out with this. Who knows, maybe we’ll come up with something new or interesting.

A sincere thank you to everyone who has already reached out and responded to the challenge, and I look forward to reading what even more people have to share.

P.S. This speaker, Brené Brown, gives an amazing talk on the need for people to embrace their own vulnerability, and how it leads to a healthier lifestyle. I strongly suggest everyone check it out.

http://www.ted.com/talks/brene_brown_on_vulnerability.html

The “S” Word

Guest Post by Mary Nairn (MY MOM!!)

So…

…my beautiful daughter has thrown down the gauntlet!

Issued the challenge of authenticity to all of us who love her.

[ Now, first of all, before I write anymore, I have to point out that not only is she ‘a tough act to follow’ – the understatement of all understatements! – but on top of this, I’m doing something I never thought I would do… a blog post.  So bear with me as I struggle on both fronts! ]

With tomorrow marking exactly one year from the very worst day in our family’s life – the day Lynsey’s tumour was discovered on that hateful MRI – many emotions hurricane around me and muddle together.  One emotional descriptor, however, stands out above the rest – the “S” word that Lynsey herself identified in her blog post “The Weekend I Felt Normal” (Nov 9).

For most of this past year, I have dealt with the “S” word in the same way that most of the characters in the Harry Potter books related to “He-Who-Must-Not-Be-Named” – that is to say, if “he” (Voldemort) was not actually named out loud, then perhaps he (or in my case, it) won’t be made real.

But Lynsey DID name the feeling.  And so must I – out loud this time…

SCARED.

(Intriguing that when I first saw this word in her post, my mind read it as “SACRED”. Knowing that I’m not dyslexic, when I realized how I was mis-reading the word, it made me wonder whether there was something subconsciously at play here that I should pay attention to. There have indeed been many moments, events and connections during this past year’s very-much-unasked-for journey, that would definitely warrant the ‘sacred’ description … but this is perhaps a musing for another day.)

So ‘SCARED’ was – and very much is – the word.

I can’t shake the image of all of us (our family, that is) being in an extremely wobbly boat during the past year – being tossed around in very choppy waters and certainly thrown about the boat, but all the while being held up and supported within it, and heading in a very specific and prescribed direction.

Now, as the year (and hence the treatment plan) nears ‘completion’, I can’t shake the new image of us having to step OUT of the boat – with no idea of whether there will be solid ground upon which to stand, or just whirling, heaving waters pulling us in an unknown direction.

Despite this unsettling feeling though, I DO feel that if we follow Harry Potter’s lead and speak the word out loud – SCARED – that we can defeat this emotion just as Voldemort was ultimately defeated.

And just like Harry, we too have many friends and supporters who continue to stand by us, fight with us, and help along the way — that means ALL of you who are reading this, and everyone connected to Lynsey in one way or another.

Now it YOUR turn to take up her authenticity challenge.

Together, let’s tackle “SCARED” and send it packing!

The Bumpy Rug

Today I watched an episode of Modern Family where Phil made a comment that brought understanding to what I have been feeling and experiencing recently. Claire wanted to ignore a problem she had with Gloria and just sweep it under the rug. Phil said “the problem with doing that is that eventually you will have a very bumpy rug that turns into a tripping hazard”. What a profound statement!

My blog has, for the very first time in my life allowed me to be brutally honest with my emotions to myself and to people who I have not been able to be honest with before in my life (who I wish I could be). My blog has provided me such freedom and allowed me to be authentic. Having the opportunity to be totally authentic, without concern for judgement, reaction, or tension is a wonderfully freeing and empowering thing.

Over the past two months I have “tripped” over the rug under which I have been sweeping things many times. I fear if I continue to sweep things under the rug, the next “trip” could be a very dangerous one.

All my life I have felt the need to limit everything that I say. Regardless of what was going on in life, I felt like conversations needed to remain “fluffy” or “superficial”. Sharing any true emotions was a sign of weakness and was unacceptable. The though of crying, showing fear or nervousness in front of anyone but Steve is unimaginable to me. I want to change this. I want to be able to authentically interact with those I am closest to in person, not just on the blog. Please help me do this.

Survivor Conference 2012

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For those of you wishing to hear more about the Survivor Conference check out YACC’s updates to learn more about what we did each day. http://www.youngadultcancer.ca/survivor_conference/news

Still trying to re-adjust to life post conference…

The Weekend I Felt Normal

This morning I attempted to tell a close friend about the 2012 Survivor Conference (put on by the greatest organization of all time – Young Adult Cancer Canada) that Steve and I had the honour of attending last week. I use the word attempted, because all that came out was a jumbled mess of stories, feelings, information I learned, and amazing people I met. She made a great suggestion, why not do a “mind map” to try and organize things and help me reflect and take in some of what happened.  So…I did! And wow did it ever help!  I now have a piece of paper with so much stuff written, highlighted and drawn on it that it is unreadable. In doing this I felt three main emotions, which I really want to share and use to try and explain the time I spent with my Young Adult Canacer Canada (YACC) family.

1) SCARED

I know I probably shouldn’t start off with this, because those who weren’t at the conference won’t understand, but I need to share. I had the most fantastic time, met the most amazing people and learned sooooo much over the 5 days we spent together. After a lot of reflection and time to process my emotions I can admit that I am scared. I have been hiding this for almost a year from everyone. I am scared that the tumour will return (or never shrink), and that I will need more treatment. I am scared I might die. I am scared about what will happen after I finish treatment. I have focused so much on just getting through this year that I really have not thought much past that. What will my future look like? I have changed so much that I don’t think I am just going to be able to fall into my old life (which I naively was thinking would happen). I am scared about my future with Steve. Will we ever be able to get insurance? What about kids? What if I can never work full time? Will I be able to live with this fear of the unknown? When I was first diagnosed I thought, cancer at 23 is just a (big) bump in the road, but once I get through the year things will be right back on track. I have slowly been learning that that isn’t the case. Cancer is a total redirection. Your life takes a different road all together. My old road was so clear, and I knew where I was headed. But this this new road that is slowly unfolding in front of me is very curvy, and I can’t see around the next bend. I know that this new road is much more exciting, full of life, happiness, growth and many other positive things that were lacking pre-cancer, but it is still scary.

2) NORMAL

As the title of the blog says, for the first time in almost a year I felt normal. I really did not know I wasn’t feeling normal, until I felt normal. (I hope that makes sense!). At the conference cancer was normal. No one looked at me funny, said “oooo but you look so good”, or stared awkwardly when I said I had cancer. The feelings and worries that I face are normal. Everyone in the group had or has these thoughts. We are all there to help each other and share our experiences. I felt a part of something magical, something life changing and it brought me out of isolation. It was acceptable to talk openly and honestly about emotional, physical or any struggles. I realized I did not need to worry about what will the reaction be if I tell someone I am scared of dieing or worried about returning to work. I was finally able to think, feel and share without being the “strong” one that people think I am.

3) THANKFUL

The conference made me more self aware and reminded me of all the wonderful things I have in my life. It was a breath of fresh air! I am so thankful for Steve and all he has done for me, given up for me, and changed to help me. I am thankful for my amazing parents, family, friends and supporters who have also helped me so much over the past 11 months. I realized that not everyone has this support and I am extremely grateful that I do. I am thankful that Geoff Eaton started Young Adult Cancer Canada, and for the amazing team he has gathered to help Young Adults like me. I am very thankful that so many survivors and supporters had the courage to attend the conference. They have helped and supported me already, and have changed my life drastically. I am thankful to feel normal again. I am thankful for my health, and the strength and energy I do have. I am also thankful for the financial support that I have received over the past year. There are so many cancer survivors who are not blessed with these amazing things.

Eleven months ago I would have thought a post at around this time would be a “wrap up” post as I was preparing to “get back to life”. This post feels like the start of something instead, I feel that the challenges are no where close to over. I would say that many are just beginning. I will soon be moving from cancer patient to cancer survivor. How do I make that transition? I know that my amazing YACC family will help me though. I am honoured to be a part of this organization and am blessed to have attended the conference. Thank you, Thank you, Thank you!