A Place in the Country for the Caregiver

I am often asked about my work.  In the beginning of my work in oncology, I tended to share that I was a social worker, leaving the oncology part off.  I chose to do this because once I’d say “I’m an oncology social worker” the conversation changed.  People wanted to hug me, or would share that I was unique or special somehow because oncology and I chose each other.  “I don’t know how you do that kind of work” or “It must be depressing” were often the replies I received from my conversation partner.  I do the work because I can, and those who can do this work should. Personal motto of mine,one that I learned through my work with an awesome pediatric oncology nurse.  But that story is for another blog.

What brought me to oncology? How do you end up working in a world that many consider depressing, or full of death?  Even when I share that I have THE BEST job in the world, and that I see the best in humanity each day, I can tell people don’t believe me. They have that , “Well aren’t you a crazy one!” look on their faces.  So often the question isn’t why oncology, but how?  How did you end up in oncology?

Here’s the thing that many who work with me professionally don’t know:  I am also a survivor.

Right. So.  There you have it.  Thanks for reading the blog and have a good day.

I am a secondary survivor.  I was not the patient, but the patient was a member of my family.  Once you are initiated into the world of oncology, you do learn that this is a family disease.  It impacts everyone, including the caregiver.  I was the caregiver to one of my children.  Our oncology experience came with one additional twist – the disease was rare, might be a cancer, might not, depends whom you ask.  But I am hear to tell you, just as our oncology team would tell you, makes no difference what you call it, oncology is oncology.

Our family survived due to great support from angels disguised as family and  friends, support organizations such as SuperSibs,and a great oncology team.  And we have been on the New Normal path for more than three years!

I was recently speaking on this very topic, life in the New Normal. When people begin treatment for cancer, they often look forward to the end of treatment and returning to the way things used to be. This is generally not the case; cancer changes people in many ways. I covered things like the physical changes that can come with treatment, the changes survivors often experience in their relationships, the financial impact of treatment, and the strength that survivorship brings.  I was sure to share that caregivers are survivors, too.  Their cancer experience also begins on the day of their loved ones diagnosis.  Oftentimes, however, there is so much focus on  the cancer patient that the caregiver is on the sidelines, feeling guilty for how they are experiencing cancer.

Living with someone going through treatment and subsequent recovery can be, well, a real pain in the butt.  Someone taking steroids is not fun to live with. Wondering if your loved one is going to survive and feeling hurt and angry after the recent emotional outburst that came your way due to the side effects of their treatment protocol is exhausting. Rarely is there a time or a place for a caregiver to truly be real, or share what their experience is like.  Can you imagine saying, “Yeah, my husband is a really monster to live with right now.  I’d like to knock his lights out or get a little place of my own in the country until this phase of treatment passes”?  Often these are just the feelings that the caregiver is experiencing, and  they don’t know where or how to share them.  Talk about this? Yeah right.  Who is going to understand those types of feelings when I just feel plain guilty for feeling them?

Families and caregivers are often referred to as the “Other Cancer Survivors”.  They don’t experience the physical impact of the disease, but their emotional distress can be the same or  sometimes worse than the patient’s.  Research is just beginning for this group of cancer warriors, but we are finding that the rate of anxiety and depression found in caregivers is often greater than that experienced by the cancer patient. Caregivers are survivors, too, and need support as the fulfill the critical role on their family’s cancer team. They need to be asked how they are doing, and what they need in order  to cope with their own issues of survivorship.

During our question and answer session, I was directly asked if I was a survivor. This has not happened before and it was time to be direct. Yes, I am.  I am a caregiver and I am a survivor.  I do the work that I do because I can and I love it. Truly. I work with survivors every day, and many are caregivers, not just patients. Amazing people, doing amazing things, just by putting one foot in front of the other.

Know a caregiver?  Hug them, help them, and share that you understand that they are a survivor too.


One response to this post.

  1. Posted by Doc O'Connell on May 11, 2011 at 8:05 pm

    Melissa, Liked your article. It touched on lots of good points, but missed a HUGE one. The power of Prayer. I’ve spent the past three years fighting metistatic renal cell carcinoma and my wife has been my primary care giver. While I’ve tried to be self sufficient, there have been times I needed to lean on her. She will be the first to point out that the Prayers we receive from SO MANY AMAZING people. There have been highs and there have been lows. When the lows strick, I reflect on the prayer support I’ve received. There have been dedicated prayer services for me, and from those there are so many who will grab me at church and point out that they’re praying for me. I get those “angel” moments when I most need them. My bride spends time in Adoration every week, and I know that my fight is at the point of her concerns. Having that ability to sit right next to JESUS…RIGHT THERE in front of you is so healing. We’re blessed to have a 24 hour Adoration Chapel at Holy Cross, and that is that shot in the arm my wife and I get when we need it most.

    So…when you talk about care givers, don’t forget the biggest caregiver out there…JESUS.



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