When our mother was diagnosed with Stage 4 glioblastoma 8 weeks ago, the doctors and oncology team gave us an overview of what to expect…the possible progression of the disease, the possible timelines, the possible side effects of the tumour and the meds that she is taking…basically, a lot of possibilities. But within these possibilities are so many ‘what ifs’ and unknowns, and the uncertainties take as much a toll on families dealing with the disease as the certainties.
This is what we do know. In the eight weeks since her diagnosis, she has gone from a vibrant, active, life-loving woman to somebody who requires constant supervision, is now wheelchair-bound and is unable to move from her bed to a chair without support. Each day, we recognize that she has faded more than the day before, making it crystal clear that her days with us are numbered. So, we do what we can to ensure that she is comfortable in her own home. And in all this craziness that is our life, we continue to learn.
These are some of those lessons…
With tears come joy
The speed of GBM’s progression is ridiculous, mind-boggling so, and with this comes a sense of complete and utter helplessness. The physical changes to somebody diagnosed with GBM can be overwhelming, because they occur literally overnight, whether it’s the loss of mobility or the facial swelling and everything else in between. None of it is easy to comprehend, basically because watching somebody that you love waste away can be debilitating. And at times, as strong as we’d like to be for our Mom, the tears still flow. What we’ve learned is that it’s okay. Let the tears flow, because with this will also come incredible moments of joy. Case in point…Mom’s exhaustion is so very sad for us to watch. Yet the moments that she shares giggling with her best friends during their regular visits is so joyful, something that we wouldn’t have necessarily experienced if we hadn’t been at home with her. So with the tears also comes the joy. And that’s okay too.
Everybody’s Journey is Different
Despite the fact that people may be living the same experience when their loved ones deal with a cancer diagnosis, not one person will process this experience in the same way. Some will deal with it matter-of-factly, others will shut down to avoid the pain, and others will lash out at anybody within a two-foot radius as their anger takes over. I’m not suggesting that you accept being treated badly by anybody, but it helps to remember that often the pain that comes with accepting a terminal diagnosis of somebody you love can sometimes cause people to say and do things that under normal circumstances, isn’t who they are. When faced with this, my sister said it best. For each of us, this is our own personal journey and we will all deal with it differently. And we are living this firsthand. Don’t take one person’s outburst as a personal attack…they are simply dealing with their own hurt and need time to work through it.
Be Grateful for the Gifts
Although crises like a cancer diagnosis can bring out our less than endearing qualities, they can also bring out the best in people. We weren’t prepared for the outpouring of love and kindness from our family and friends. We have been taken care of in more ways than we can count, with friends preparing meals so that we can enjoy our remaining time with Mom without concerning ourselves with feeding crowds of people. Others are shoveling snow for us, checking in on us regularly and coming by to make sure that we are holding up as best we can. Family and friends come by to sit with Mom, laugh with her and just be with her. This generosity and care is so unexpected, yet so very welcomed and needed. The reality is that we may not know what we need when we go through something like this, and because of this, it may take our friends to show us. And when they do, be grateful and thankful for these gifts because they are given with love.
You Will Come Out On The Other Side
Sometimes, an experience, a story, a poem or a quote will present itself at the right time and express exactly what you are feeling. We have found this to be the case often in the past eight weeks, whether it has been a photo that somebody has found in an album of Mom as a child, a story shared about her life experiences with classmates and family, or poems like the one that my sister sent us one afternoon. This poem was what we needed at that moment. And so I know that it is okay to feel what we are feeling, to hurt, to cry and maybe even to scream. And when this is all said and done, I also know that our memories and the laughter shared with our Mom will sustain us and because of that, we will come out on the other side.
I’ll bet you’ve had about enough
Of people telling you how strong you are
And how great you’re doing
During this awful, difficult period in your life
Maybe you’d rather hear someone say
How much this sucks,
How outrageous & unfair it is
Maybe you’d rather hear someone tell you
You don’t have to be strong all the time,
Or that it’s definitely okay to
Curse fate & throw a tantrum or two.
So here I am to tell you all that stuff
To let you know where I stand,
Which is right in your corner.
There’s no right way or wrong way
At a time like this.
However you work through this thing
Is immaterial to me.
All I care about is that you ask for what you need.
Lean on those who love you
And trust me when I say
That you will come out the other side.
~ Author unknown