Wednesday, February 16, 2011

The Patient's Spouse - by Heidi


Either of us could have writtten this blog but my experience is more recent - I wanted to be the one to write.


When Joe was re-diagnosed with bladder cancer, after 2 years, I could not believe it. Here was the doctor pointing out all these tumors on the scan. I have been a cancer patient for almost three years. This, the second time I am a cancer spouse, demonstrates to me (again) that being the spouse/partner/caregiver of a loved one with cancer is VERY hard.


You want to wave a magic wand, take away every fear and painful experience....but you cant.

You want to find the magic treatment that will return them (and your life) to the pre-cancer days.....but you cant


You hover, you do for them, you dont talk about difficult subjects, you pretend.......and they feel cut off and like a child.


You don't take care of yourself, you ignore tasks and duties that seem suddenly non-essential. And yet, as they need ot focus on their treatment, suddenly you have MORE things to do, including things that they used to take care of. And you need to learn a whole new world - medicalese, insurance mazes, drugs, specialists upon specialists. It is overwhelming.


To make it worse, people who love you dearly focus on the person who is sick. But you are hurting and struggling too. I remember the first time someone really asked me how I was doing after Joe's cancer returned. I burst into tears. I am so grateful to this day for her love and hugs and prayer in response. I wanted so much to be strong for Joe but if I dont recharge.... I cant.


I've been learning:

  • Joe wants me to share my fears and pain and struggles with him, just as I had before his diagnosis. I don't need to be superwoman - just me.
  • I need to take care of myself or I cant be a good partner to him
  • There are a lot of people professionally able to help. Use them for your medical, legal and financial issues. Ask to talk to a counselor or social worker or chaplain. Ask, ask, ask.
  • Ask for help from friends and family and neighbors. They usually want to help but dont know how or what. Ask for specific things that really DO make you feel better. A friend chatted with me while she cleaned my refrigerator.

- Heidi

3 comments:

  1. I am so happy you are sharing your feelings. You have been through more than I could ever take. Even when you are suffering, it is still so hard to watch someone you love suffer.

    I enjoy having a blog, because it sort of gives me "permission" to voice what is real and true. Your personal blog is your voice, and you can say what you need to say.

    I find that writing is cathartic, even if it's just a blurb............

    You and Joe seem to have excellent communication amongst you, and the love holds it all together.

    All one can do is all one can do, and by leaning on God and trusting in Him, takes much of the fear away.

    God Bless you dear

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  2. This is a brilliant post Heidi. You bring back so many feelings and experiences I had while Kerry was ill, and the advice you give is exactly what I learned the hard way, to ask for help, accept help, take time to take care of myself and recharge, and, especially, to remember that kerry was still himself even sick and to share with him and lean on him as my trusted partner despite diagnosis. This blog you and Joe are writing will help so many.

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  3. Heidi, God bless you and Joe!. It's amazing how heartfelt writing can be when the writer pours their own heart into it. I think you should copy and save all of your writing into a Word document and publish your works when you feel you've come to the end of what you'd like in a book. So few realize what great talent they have in writing. I know for me, I am great at writing when I hurt. I am very passionate in my writing and so are you. I cannot help but to think you are meant to share your story with many. God bless you, Heidi.

    Debra La Chelle

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