Tuesday 3 May 2016

To Be a Caregiver. Our Super Heroes in Disguise.

Sometimes we have to acknowledge the heroes in our lives. And sometimes our heroes aren't always seen as such. Sometimes they just seem like regular people doing regular things to those peering in at our lives from the outside. These heroes I'm referring to are our caregivers, our co-survivors, the people who take care of us when we are sick from chemo or to weak to walk from surgery or too down and overwhelmed to get showered and dressed. They hold us, they listen to us, they let us lean on them hard, all the while dealing with their own problems and worries. They can be our spouses, parents, siblings, children, doctor, social worker, friend... They can be anybody. And I know from my own experience how vital they are and how my caregiver has helped me cope and grow as a person.

Now a cancer diagnosis has a way of taking over major parts of your life in the beginning, just like the rogue cells themselves trying to take over the healthy ones. We don't want it to take over, but once you hear those 3 cold words, it's inevitable. At least for a little while and for some, much longer. So far in my experience as a young adult, we go from having the illusion that time is on our side. We're trying to get our careers off the ground, saving for a home, watching our small children grow... I think for everyone, no matter the age, we feel time is abundant and even if we logically know anything can happen to anyone, it's incredibly difficult to fathom illness getting in the way of plans and ambitions. We go from that, to suddenly staring our own mortality in the face, our eyes on the clock of life, feeling like it's ticking down faster than we want it to. And even though a cancer diagnosis doesn't automatically mean death (let me repeat that: cancer DOES NOT mean death!) there's a dreaded feeling that comes with it; the feeling of simply not knowing what's going to happen to you now. It's some heavy emotional baggage to wear on your shoulders.

Well our caregivers absorb all of that. We lean on them harder than anyone else when we feel like life is out of control. And they let us, without judgement, with nothing but love and commitment to always being there for us. From their point of view, they are watching someone they care deeply about struggle with their health. I can only imagine the feelings of helplessness are overwhelming. When you care so much about a person you just want to be able to take away their pain, make them whole and healthy and happy. But unfortunately, when someone has cancer or another serious illness, it's not that simple. There is no magic wand to wave to make them all better. So a caregiver puts on their super hero cape and steps up big in any other way they can; in any way they have control over. They hold us while we vomit, wipe our tears away, listen to our fears, talk to our doctors, advocate for our health, make sure we're eating well, make us laugh, remind us to live in the moment... hug us and love us unconditionally. They might suppress their own feelings of fear and sadness to be there for the person they love, summoning up a strength bigger than themselves to be able to take on the survivor's pain and their own. And even others around them, such as children. They do this while continuing to work, clean, run errands, cook, raise their babies, doing all of the "normal" life stuff that doesn't just stop when you get sick. Our caregivers, our co-survivors- they are truly our super heroes and we do not know what we would do without them.

Life has a way of testing us, I believe. In many different ways. And I can only speak to my own experience, ofcourse. When we were recently told my cancer is highly unlikely to be cured and I might only have 2-5 years before I succumb to it, we were devastated. We had been using the word, "curative" to propel us forward. From the beginning we were told the main objective was to cure. After finding out the cancer had not only spread to 26 lymph nodes, but to lymph nodes far away in my neck, the objective has more become about how to increase my quality of life, not quantity. At 27 years old, with 3 small children- this is hard to truly accept at this point. But it's our reality as a family. Before my husband reaches the age of 35, he might be a widow. My children may not have a mother. It's a surreal situation but one that could happen, nonetheless. That being said, this is how I believe life tests our very strengths. I as a survivor, and my husband as a caregiver. My caregiver won't let me fall apart and he won't let himself fall apart. Even though we live with the fact my time *could* be running out much sooner than we would like, we are choosing to live our lives with love and positivity. We choose to look at the fact that people beat the odds all the time and the fact that I'm young and otherwise healthy, works greatly in our favour. We look at the fact I'm responding very well to treatment. We choose to believe I'm not going anywhere for a very, very long time!
If I didn't have my caregiver (my super hero!) close by my side at this point in my life, I do not know how I would be handling this situation. And it's because of this situation we are realizing just how strong we are. We are realizing that there is so much more to life than we previously thought. Doing what makes us happy and what is best for our children is what we now focus on. We breathe more deeply and tell eachother how much we love one another more often. We are learning to appreciate the things we might not of before, the stuff that makes us human. The temper tantrums and sibling rivalries. The mild annoyances of one another. We are learning the importance of forgiveness. I credit alot of what I have learned to my caregiver, my co-survivor, my super hero. I probably wouldn't of grown so much as a person without his guidance.

As survivors we need to reach out. We need that caregiver to lean on and we need the support of others. And just as importantly, caregivers need support as well. They need to connect with others who get what they are going through and what they deal with on a daily basis. Thankfully, there are many wonderful online communities to reach out to in our time of need.
Facingcancer.ca is one great site dedicated to helping survivors and their caregivers cope. There are forums to ask questions, blogs, and a wealth of information on the newest cancer treatments and programs. They also have a list of other support groups people can access.
For adults ages 18-39, there is Young Adult Cancer Canada (YACC). They have valuable resources to help survivors and their caregivers and connect you with thousands of others who "get it." Their site is youngadultcancer.ca.
For stomach cancer specifically, a new support group has been started in Toronto, Ontario called My Gut Feeling. They offer amazing support to those affected in anyway by stomach cancer. This is so important because there is very little out there in terms of support and research for stomach cancer. My Gut Feeling offers support groups once a month that you can attend from anywhere, in person or virtually, where they discuss educational topics and ofcourse, the emotional aspects of a stomach cancer diagnosis.
For further stomach cancer support there is also a fantastic organization called Debbie's Dream Foundation.

If there's any advice I can give to anyone going through a cancer diagnosis, it's to hug your super hero. Appreciate them and all they do for us. If you have little support, I strongly encourage you reach out to a support group or online community. You will find people who understand what you're going through and people who will help you.
Practice gratitude in whatever ways you can and feel comfortable with. There is no wrong way, even if others have trouble seeing it. And don't forget to breathe.





































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