Readers of my blog know what I've endured as a cancer patient and my gripes about the medical system and uncaring medical personnel. But there is something I've kept relatively quiet about -- until now.
Throughout my treatments, I was alone.
Alone.
See, my parents were devastated by the news of my cancer diagnosis and couldn't come with me during chemo and radiation and surgery. I no longer harbor resentment because I know they were suffering and so devastated by my illness. They just couldn't deal with it. I have since put that all behind me, and my parents and I have a close relationship now.
During this darkest period of my life, my then-husband refused to go to chemo sessions with me. He refused to go to my MRIs. I drove myself to chemo and radiation, and I drove myself back.
He also refused to work.
I worked two jobs -- while undergoing chemo and radiation simultaneously -- just to keep from losing our condo and having our car repossessed. (Only took one sick day.) Success with the condo, no success with the car.
I walked everywhere even though I felt like sh**, and then I walked away from the marriage.
Yet, although I was technically alone, with the exception of a few close friends, I encountered many unexpected "heroes" -- those who nurtured my aching soul and made me realize I really wasn't so alone. I am so grateful to them for those special moments that helped me heal emotionally.
My medical oncologist. After crying to him about chemobrain, he held my hand and convinced me I wasn't stupid. He told me he cared about me. He became my hero that day.
My radiation oncologist. With her sunny disposition, a kind smile on her face and a wicked sense of humor, she made me laugh. I appreciated that moment when she was talking with another doctor, and I had told the nurse that I had a fever. The nurse told my radiation oncologist, and she immediately ended her conversation with the other doctor to tend to me. Once she said, "You're so sweet; I just LOVE you!"
Nurses. During my biopsy, nurses rubbed my legs and called me "honey" and "sweetie." I needed to hear such tender words while I was feeling so vulnerable. And I want to especially thank the nurse who, during one of my meltdowns a few months later, held my sobbing self in her arms and rocked me like a baby. She gently wiped the tears from my eyes.
My chemo nurse knew I had nobody with me, so she tried to take time out of her crazy-busy schedule to sit down with me and just chat. She told me all about her life, her family, and we laughed a lot.
My surgeon. While he was performing my biopsy, I kept telling him that I didn't want it to be cancer. He said, "I don't want it to be cancer either." I appreciated his humanity.
The American Cancer Society. This organization provided a counselor who would coach me through the treatments. We spent hours on the phone.
My primary care physician. She referred me to all my great doctors and was working behind the scenes to ensure I got the right doctors. She spent a lot of time on the phone with me, as well.
I also found heroes in the extraordinary people I shared my chemo room with.
At first I didn't like the idea of sharing a room with other chemo patients. But in my case, having nobody with me, it was a blessing to be in the room with others. There was the man who served during World War II and was telling me all about his experiences. He told me that it was a shame I had cancer so young. I appreciated his empathy, and I hung onto every word of his war stories.
No matter whom I shared a room with, these patients -- upon finding out I was alone -- would try to cheer me up, even as chemo was being administered to them. They would share stories about their lives, and their family members would get me things to drink and would encourage me to stay healthy.
The most poignant experience I had in the chemo room, however, was when I shared it with a young woman whose breast cancer had spread. Things did not look good for her, but her parents were there by her side. They told me that she was their only child and they so loved her, so of course they were with her throughout all her treatments.
And, get this, despite their daughter's dire situation, her parents became my guardian angels that day of chemo, tending to both of us. They made sure I had a blanket, offered me jelly beans, got me things to drink, helped me navigate my way to the bathroom, and were so attentive to me, that I realized they had adopted me as their second daughter that day.
I will forever remember their kindness.
I am grateful to all my heroes and realize that, because of these wonderful moments, I was never really alone.
This posting is an excerpt from my upcoming book, Calling the Shots: Coaching Your Way Through the Medical System. To obtain these excerpts regularly, please subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.
9 hours ago
Wow, Beth. Wow. I'm grateful to you for sharing your poignant and moving story:)
ReplyDeleteJody
One of the great things about being "loved" through our cancer treatment is that we learn how to be more compassionate and considerate ourselves. I'm much more aware these days of the needs of others.
ReplyDeleteBeth [through tears] there are no words to adequately express my feelings at this moment. I felt there was something special about you and now I understand why. There is so much more to you than the words we read on these pages about you. Thank you for being brave enough to share your story in such a way that you have been able to give thanks and gratitude to those that have made a difference. May your life be blessed.
ReplyDeleteOh, Beth! This brought tears to my eyes. I am so sorry about the behavior of your parents and ex-husband. You have the perseverance of a saint! I wish I could have been at that infusion room to be another guardian angel to you.
ReplyDeleteOncology and hospice medical professionals are very special types of people, aren't they? Most seem to exude a special empathy that goes beyond the norm. I salute all those who came to your rescue during your diagnosis and treatment. It restores my faith in humanity.
Jan
Beth,
ReplyDeleteThis is such a moving post. I am so sorry you were so alone during that time, but thank goodness for all of those wonderful people that became your guardian angels. I love the way you describe the humanity of your doctors. Sometimes the empathy they show us is the most valuable thing they can offer us. And all those others, thank goodness they were there for you. How did things turn out for that young woman? Do you keep in touch with her parents?
As you know, I handled my chemo quite differently and I was extremely luck to not be alone. This post reminds me of how very different each and every cancer experience is.
Thank you so much for sharing, Beth, and you are most certainly NOT alone now.
Look I don't know the circumstances but am so glad he is now your ex-husband. A partner like that nobody needs. I don't know how you drove yourself back from chemo. I found I could barely walk. I had planned to drive myself back to and from chemo but wasn't able to. Did for radiation though as that wasn't a big deal - the actual experience, that is. Hope you are not too alone now.
ReplyDeleteBeth, the loneliness of a cancer diagnosis and treatment are often not referred to.... even though many people have friends and family who can't deal with the situation (through fear I think). So thank you for writing so honestly about your experience.
ReplyDeleteIt's great to hear that you found support in your medical team and other patients, although I would not call them heroes; just fellow empathetic humans doing their best in a difficult situation and extending kindness to you. I'm glad you found them. Best, Sarah
Jody,
ReplyDeleteThank you for your kind words and for mentioning this posting on your latest post. Looking forward to tonight's Twitter chat session!
WhiteStone:
ReplyDeleteYes, through suffering, we certainly learn more compassion to others. I was very lucky to have many people -- my unexpected heroes -- rooting for me.
Chez,
ReplyDeleteYour comment brought me to tears. The subject of the posting was so raw, I had to be honest. Thank you for all your support and friendship.
Jan,
ReplyDeleteOh, thank you so dearly! I know you would've been my guardian angel, as you are so caring. What has amazed me is the quiet heroism of my medical team. People who work in oncology can sometimes be mean, but my doctors and nurses were beyond special.
I have put the past behind me. While I felt the need to vent about the lack of support from key people in my life, I harbor no ill will. For example, my parents and I have since become quite close. I totally get how hurt they were. I was hurt at the time myself, but healing has occurred.
Nancy,
ReplyDeleteThank you for your understanding. You are right: I am not alone at all; I am grateful to my friends and to my blogger friends for offering so much support and sharing their authentic stories.
By the way, the American Cancer Society counselor said they didn't understand how I managed to survive with all the driving and walking and stress. It's amazing how strong we can be when we have to be.
I never saw that woman nor her parents again. A big regret. I didn't have the energy or wherewithal to ask for their contact information. I wish so badly I could've written them a letter telling them what they meant to me.
I gave my oncologist an anthology containing an essay I wrote, where I mentioned his kindness. He insisted on reading it with me in the exam room, and he almost started crying. I thanked all my nurses and doctors!
Gillian,
ReplyDeleteThank you for reading my posting and leaving a comment. I'm no longer alone and have a rich life filled with friendship, love, and my wonderful daughter.
The marriage was problematic before cancer hit, and it was bad during it, as you know. The best thing was to end it. I am supremely happy!
I could barely walk myself. I had to keep breathing hard and saying "left, right, left, right."
Sarah,
ReplyDeleteYou are right about my medical team being comprised of empathetic people. It's true: the isolation of cancer patients does occur, friendships are lost, and family ties are severed.
It is very common.
I'm lucky my brother was here to support me (he flew in for my original surgery), and I have had great friends stand by me.
We take comfort where we can, don't we? I'm devastated for you that you had to go through this alone. That's almost criminal neglect. In these last seven months since James died, I've often wondered if I had a recurrence, who would be there to drive me from the middle of nowhere to the oncologist an hour away and home again? Who would hold me and reassure me or tell me "we're in this together?" So difficult to think about, but you lived it!
ReplyDeleteThis day, and for many days to come, you are my hero.
Grand Rounds is up, and your post is in it:
ReplyDeletehttp://insureblog.blogspot.com/2011/07/grand-rounds-its-up-to-us-edition.html
Please let your readers know.
Thanks!
Hank Stern
Beth, I'm so sorry for all you had to bear. As if this whole thing isn't hard enough. It's true, though, isn't it, we find the strength somewhere. Thankfully, you found angels along the way and as some other people have commented, you are no longer alone. We're here.
ReplyDeleteThanks, Brenda, for your kind words. You certainly have been through your trial-by-fire through your loss of your beloved James. One thing I've realized is that we summon up the courage we need when going through a crisis. I did what I had to do to take care of myself.
ReplyDeleteThe truth is that if you had to, you could get through tough times. Thanks for calling me a hero. I think we are all really ordinary people who have done something extraordinary.
Thanks again for reading and commenting.
Hank,
ReplyDeleteThanks so much for including my posting in the latest Grand Rounds. I will let people know about it through various social media outlets.
-- Beth
Stacey,
ReplyDeleteI have found great comfort in the blogosphere and keeping connected with the breast cancer community through so many wonderful bloggers, you included.
Thank you for the encouraging words. It's so nice to have this great support system in place. None of us is alone.
Darn it, Beth, even with all my crazy meds, you totally made me cry. I wish I'd known you then. Beautiful post.
ReplyDeleteP.S. I have a babysitter right now and should be grading papers, but instead, I'm reading your blog.
Jeannie,
ReplyDeleteThank you so much for your poignant comment. Didn't mean to make you cry. Sorry to contribute to your deliquency in grading papers. LOL
Beth,
ReplyDeleteYour post brought tears to my eyes. Thanks for your honesty and vulnerability. While I can't identify with loneliness to the extent that you experienced it (I'm grateful for a strong network of family and friends who have been next to me throughout my cancer journey thus far), I definitely understand what it's like to be alone with a disease that no one but me is experiencing. And I, too, have felt the power of all those — current friends, long-lost friends, healthcare professionals, social workers, the list goes on — who have stepped up in the moments I've needed them most to help me feel less alone. I'm glad you had those people, too, and that now you're able to be that person for others!
Hi Naomi,
ReplyDeleteThank you for taking the time to read my posting and commenting. I really appreciate your moving words of encouragement. Yes, anyone with cancer really must face obstacles alone, even if we are supported by family and friends. Ultimately, we go into that MRI room or for whatever procedure we need -- alone.
Yes, it is great to have wonderful healthcare staff. It puts the face of humanity onto the treatment.
I have checked out your blog and will comment soon.