What Most People Don’t Understand…

A friend shared this powerful blog written by an oncology nurse, Lindsay, who is now a cancer patient. It is a open letter to her former patients titled, Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it, and describes what she has learned from her personal experience with cancer.

I resonated with her message as I either personally experienced or witnessed Brad going through much of what she describes in this article.

In the comment section, I added my own viewpoint of what most people don’t understand about what it is like being a spouse of a cancer patient and then becoming a widow.

Here’s I posted:

I am the survivor of a spouse who died from cancer. Yes, you captured many of the hard, hard points that I experienced when my husband was diagnosed, and then suffered and died from adenocarcinoma of the duodenum.

Maybe someone already shared this perspective, but I thought I would add what most people don’t get about being the caretaker of a cancer patient and how it feels to become a widow.

Most people don’t understand that with those three terrible words, “You have cancer” your whole world changes. You simultaneously feel guilty for being relieved you didn’t receive the bad news, but also terrified and shocked that your partner, lover, best friend, spouse, and father of your children just did. What do you say to this amazing person who has shared life with you for the past thirty years? How do you bridge the gulf that just opened up between you and him since he is the one ill and you are not. Those words are the beginning rumbles of the largest catastrophic earthquake you and your marriage have ever experienced.

Most people don’t understand that you must now become bigger, stronger, and tougher than you have ever been before. Not only are you carrying the load of two since your spouse is either too ill or recovering from a medical procedure to share in the burden of running the home, caring for the children, and working. Everything is yours to handle, even driving him to and from appointments. Your life has never been less your own than from this point on. And while shouldering the extra work, you need to keep a brave face. No whining to him about working harder and longer, no crying out of fear since he is dealing with his own inner demons, and no fussing about the unfairness of it all. After all, you are the lucky one who is still healthy. The family needs you now like it has never needed you before.

Most people don’t understand that pitying doesn’t stop with the cancer patient, but extends to include the whole immediate family. You are now that person with the sideway glances, the hushed whispering between two friends when you walk into the room. You are also asked, “How are you doing?” and have no better answer to such a complicated and complex question since your emotions are rolling like the waves of an ocean during a massive storm with its huge up and down heaving. You gain an unwelcomed notoriety as others find your situation interesting either with morbid fascination or relief that its you and not them. You lose your privacy as you work to accept the offers of help. Now people are stopping by your home at all hours of the day with meals, groceries, and other offers of support; all of which are needed, yet rob you of downtime to relax as you now must make small talk as a form of thanking them for the tangible support.

Most people don’t understand that as your spouse inches toward death so does your identity and marriage. You soon will no longer be his spouse. Sex often stops early on as the fatigue, pain, recovery from surgery, and medication makes physical intimacy difficult, too painful, or not possible. You are still healthy and long to savor the last moments of this marital connection but you didn’t realize that the last sexual experience you enjoyed which seemed normal at the time was really a form of a good-bye to that part of your relationship. You are no longer wife, you are now caretaker. You focus on aiding with medication, helping him dress or bath, and a myriad of other things that adults usually handle on their own. He depends on you for support, to be an extra set of ears during doctor visits, and to help him when the pain breaks through and requires regular dosing for hours at all times of the day until it’s back under control. You are his shoulder to cry on as he worries about leaving you and the kids, as he faces his own fears of dying, and as he mourns the loss of the life as he knew it. You, however, must find such support elsewhere, whether it is at a support group, with your mental health counselor, or a trusted friend. He no longer can be that person for you.

Most people don’t understand that when he dies, many of these realities become permanent as you carry the stigma of death. You now represent the person no wants to ever be, so many of your friendship, especially couple relationships fade away or suddenly end. You sit alone as others go out and do things you used to do with them, whether going to a concert, dinner, or other such activities. Your isolation is worse than ever since now your best friend/spouse is gone and your friends don’t know how to handle who you have become. You lose yourself as well. You wonder who you are now. Your whole life has been turned upside down and you no longer recognize the person you are becoming. And you never asked for any of this. This happened to you instead of you being a part of the reason it occurred. Divorced people think they understand but they don’t—they face a different kind of pain than widowhood. The two realities, although appear similar, are radically different. You feel cut off from the world without any doing anything on your part to have contributed to it. Only those who have been widowed get what you are experiencing. Just like him, much of your previous life has died as well.

Thank you for sharing your experiences, Lindsay. It really resonated with me. I hope you are on the mend. I know you are already a more empathetic nurse. I can see how this experience has radically changed you, just as it has changed me. I deeply appreciate your raw honesty. Thank you for letting me use this forum to share a bit of my experiences as well.

Best wishes,

Kerry

 

 

 

 

 

 

 

 

 

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