FAQ # 1

I can't believe I've reached a point in this blog where I'm addressing FAQs.

FAQ #1. Does Rich read the blog?

A: I have offered the blog to him several times. At first he couldn't read the blog because his vision was severely compromised as he was coming out of the sepsis. Then he was really tired and couldn't focus mentally. Little by little he started getting feedback from people who let him know how much they were enjoying the blog. Rich would nod and offer his standard response on knowing how wonderful I am. I offer the blog as an open book to him, and he politely declines. He doesn't need to explain.

Rich has been VERY supportive of my blog since before he remembers being supportive of the blog. We occasionally discuss the blog in passing as in I keep him updated on the limited responses I get and he reinforces how glad he is that having the blog is helpful to me.

Occasionally he will comment on a funny incident with “you'll have fun blogging THIS”. Or “Wow, that is so good, it's too bad you can't BLOG that!”

I sense his reluctance to read it as a matter of respect to me. I think he views reading my blog like reading my journal and he doesn't want to invade that sacred space. I remind him that the blog is ON THE INTERNET. But really, at this point, that's like having it IN THE ETHER. I'm fairly anonymous at this point, and it's not like anyone really cares.

I think he fears that if I know he's reading it that I will censure my writing and he really wants me to “LET 'er FLY”

Also, I think deep down he's afraid to know how all of this has affected me. Patients can feel tremendous guilt for the hardships their condition causes others. He remembers very little of the worst of this ordeal. His memory begins approximately 15 days into his hospitalization. He has NO memory of the ambulance ride, the ER, Comfort Care, talking to the doctor and requesting treatment, the PICU, the MICU, central lines being placed; no awareness of the battles I fought, the gut wrenching fear, the insanity of his care. He remembers one day waking up in a regular room and a few days later he came home.

He has been struggling so hard to get back to me that he has no energy at this point to reminisce on the struggle. Mainly I think it's very hard for him to contemplate how difficult this has been for me. He can deal with his own pain and suffering, he just can't deal with mine. Isn't that how it is when you love someone?

On some OTC (other than conscious) level I probably do write more freely knowing Rich is not reading it. Consciously I just write. If he ever reads the blog I hope he understands and/or forgives me.

I try very hard to be honest in my blog even when I'm way less than proud of my thoughts, words or actions. I want other mates of cancer patients to benefit. Everything “out there” focuses on the patient, and I want to bring something to the table for those of us who care for patients we love. At the same time I want to respect Rich's privacy. Then I worry that the blog is too much about me, and I have to remind myself that this blog is for all of the people out there who share my role.

You learn quickly that it is ALL about the patient. For every twenty people who ask you how your mate is doing, ONE will ask how YOU are doing. All of the health care providers are focused on the patient. While they will find the time to convey orders to you, they have neither the time or concern for your questions, needs or fears. If you're a “people person” there are groups to join. I'm not a “people person”, so I'm trying to be the support I would like to have.

Rich gets that. He understands that this blog is not about him. It's about our journey and it's intended to help other people on the same path. He's says he's proud of me and what I'm doing. He says, “let 'er fly...”

I get that he doesn't want or need to read it. I don't have the time or money for therapy and Rich understands that I have claimed this as my personal form of therapy. The fact that it's being projected into the ether means precious little considering current feedback and following.

At this point in time this blog is an open book that Rich has not yet explored. We're both content with the current understanding.

Next question....