Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
I rather suspect I have bitten off more than I can possibly chew with this diary, but in for a penny in for a pound. If you choose to follow below the Orange Squiggle of truth, please forgive my lapses, and bear in mind that the views expressed in this diary are those of the author, and based on my experiences. Your life path and community may be radically different.
We can all agree that going through cancer represents a change in thinking for most of us, whether it be the betrayal by your own cells, or the recurrent worry of recurrence. What many of fail to take into account, is what is going to be my change in relationship to my community, my spouse, and my family.
I am attempting to put down in words what these changes were for me, and others that have gone through this, that I have spent some time with, but it is difficult, and sometimes a little too personal...In some cases it's just flat out unbelievable, but probably needs to be said.
To start, there were two separate and distinct communities in my life...The physical community (friends, neighbors, abutters), and the virtual community (which in my case was just fellow denizens of the orange satan). My one attempt at integrating the two was one of the great mistakes of my life, and may eventually kill me, but that is the subject of a different diary which I am not ready to write at present. I would like to start with the more painful of the two, the physical community.
When I found out I had cancer, is not when I was diagnosed. I was found passed out on my porch by a delivery guy, who called the ambulance. Turns out that you can pass out from the pain of a kidney stone. While in the ER, they did a ct scan where the tumor showed up. Being uninsured, they couldn't do anything about the tumor (non-emergent, see your imaginary GP for follow-up and referral). The doctor, being a human being, rather than a cash register or corporation, spent as much time as he could with me, but that was limited. I only mention this, as it has bearing on relationships with the community.
At what time do you admit to the world that you have cancer, and who do you tell. I think I made a mistake in the way I “came out”, but that is up to you to decide. In terms of my physical community, I told my primary equipment suppliers and the bank first (stupid, I know), as my read of the contracts was that I was legally required to. Shortly there-after, I told my closest friends, still 4 months before getting insurance and an “official” diagnosis...I had too as my health was deteriorating fairly rapidly. Thats where life got very interesting, and where the subject of this diary comes in. They disappeared. I don't mean they were rude, or that they made some kind of pronouncement. They just disappeared. Stopped calling. Stopped returning calls. I didn't expect that. Three years later, after talking to some other folks, I find I'm not alone in this experience. The scientist/engineer in me is still trying to determine the why of it. Was I too needy looking? were they too busy? The artist part of me, just wants to tell nthem what they did to me at my most vulnerable, but here's the rub... they aren't aware of it.
Here is what I have come up with:
1) cancer only happens to you, for the rest of the world, it's just Tuesday.
2) If you have cancer, you are supposed to die, and many people start the mourning process immediately to avoid the rush.
3) Some people don't want to make you feel uncomfortable, so just ignore you.
Reading over this, I know it sounds cynical, and I hope you never experience it. Again, just one persons experiences. If I can make one suggestion, which may have made a difference, it would be in how I told people, and explained the ramifications of what exactly I had. Perhaps if I had lower expectations, and not expected my community to help me, I would have been more pleasantly surprised.
The portion of my physical community that I haven't mentioned, is of course family.
My spouse “farmerterri” has been the single most important factor to me surviving this whole thing with my sanity (reasonably) intact. That is not to say our relationship hasn't changed. On the completely superficial POV, Terri does a lot more of the physical work of the farm, and in our life. To an extent, our relationship has become more egalitarian. She has been very vocal about me HAVING to do less especially while I was recovering. That's not to say, there haven't been bumps, but what I have learned, is that most of them were caused by my own stubbornness, or frustration at not being exactly who I was prior (h/t to PK for helping me realize this quite recently).
I suppose that this extends to relationships with everyone, feeling like you have parts missing undoubtedly colors your interactions with others, not even taking into account the corollary guilt. I have no doubt that my illness has been incredibly hard on Terri, economically as well as physically. Fortunately she is able to rise to it. Life would be very different if she couldn't, or wouldn't.
I found out that I had cancer less than a week before Netroots Nation in Austen. In that atmosphere of hope and change (and a lot of fun) I must have come across as the ultimate fuddy-duddy, not willing to talk about something that was obviously consuming my mind. Because of being taken in by another Kossack (since banned) by a phony cancer story, I couldn't bring myself to come out to the community at large (in a comment) until just before my first surgery, and then only because I needed OPOL et al to convince me to go through with it. Big mistake. I was cut off, and cut myself off from the one community that could accept and support me, right when I needed them the most. Unlike physical communities, this community tend to be a lot less subconsciously judgmental, probably because if you choose to ignore your neighbor, you aren't here in the first place. I think it is more than that however.
If only to clarify for myself:
Like almost everything else Cancer changes relationships at all levels, but it is important to remember that these changes are on both sides. In many cases, especially in casual relationships, the friendship doesn't survive even the diagnosis, and ofttimes the guilt arising from this, while without focus, pervades all future contact. Like any life altering experience, cancer brings out facets in yourself and others that were not visible before, for better and for worse. Cancer will alter your relationships, and making those alterations stay positive and beneficial requires immense effort and willingness on both sides, and when it is good, it is very, very good, and when it is bad it is awful.
I would like to dedicate this diary to my friend and fellow survivor of renal cancer chuckchuck B. who passed away on December 20 2011. Not a Kossack, hell, not even a Democrat, but a friend and public servant around here who will be missed by many.