Get up offa that thing!

I was just thinking that it’s been almost three months since I got diagnosed after a trip to fucking New Jersey, and while I’m not quite where I was hoping to be in terms of treatment, I’ve made some progress. While the first round of chemo did a good job in destroying a good chunk of my lymphoma, it also really wiped out my immune system and made me very anemic for weeks. My immune system seems to be finally recovering but I’m still waiting for my red blood cells to wake up. As a result I’ve been spending a lot of time at the outpatient clinic having all sorts of exotic drugs and blood infused and transfused into me, with variable results. Also as a result I’ve started to run into the same people coming in for treatment over and over again, to the point that I feel that I know them. We all sit in our easy chairs in little three-sided rooms, with I/V drips next to us. Volunteers come by offering us drinks, snacks and foot massages. We’re even visited by “therapy dogs”. Almost nobody watches the little TVs in each of the rooms. Some people read or take advantage of the wireless connection. Some are older, some younger, some come alone, some bring their whole family, some sleep the whole time. Some feel better than others, some look like they’re going right back to work when they’re done. Some are really dressed-up, others are in more comfy clothes. Yet nobody talks to each other. I usually nod knowingly if I cross paths with someone I recognize, knowing that I would like to ask them a million questions, but never say anything. After all we are all in a similar boat and would have so much to say to each other. I feel that especially keenly with people that seem to be about my own age. I’d like to know how they are coping and what they’ve learned, and I’d like to share some of my insights with them. I know, there are web forums and support groups and shit like that, but it’s not the same, those things are too public.

Often, well-meaning people will tell me to “keep up the good fight” or “stay positive”. But they have no idea. If this is a fight, then who do I punch? NYT columnist Dana Jennings put it more eloquently when he points out that, how can this be a battle when the patient is the actual battleground? I’m not fighting anyone, if anything it is frustrating to feel so passive during this whole thing, taking in the collateral damage. I also agree with him that this is more like a long, dark journey through the heart of Mordor, than an actual fight. People also tell you to stay positive. But this is sometimes hard to do, and while I see the benefit of this (sanity), sometimes I feel like if I want to feel negative, that’s my fucking way of coping with all of this. There’s even no evidence that feeling positive improves one’s outcome in disease. I think there’s a place and time for feeling both ways, and when and where that happens is my prerogative. And I know that most, if not all, of those people sitting in that room know this well.

But we don’t talk to each other. Maybe out of not wanting to be inappropriate, or saying the wrong thing. I mean, how do you start a conversation about this? Maybe the other person is not feeling well and you don’t want to bother them. Maybe standing there with a fucking I-V pole is just too awkward a way to introduce yourselves. Maybe we are all just sick and tired of the whole thing. I don’t know, maybe just that knowing glance is enough.

Or maybe… we should just follow James Brown’s advice and “Get up offa that thing, and dance ’till you feel better!”  I’ll try that next. Haaah!!! :

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9 Responses to Get up offa that thing!

  1. Supercool Wife says:

    I’ll bring your polyester leisure suit and dust off my go-go boots for tomorrow….just don’t try to do any splits, please.

  2. CoR says:

    It’s not the same, but when I had C-sections I very much did not want other people to see me in pain, and sweaty, and unable to pee by myself. Maybe the silence is a form of protection? Of personal space when there is no hospital door to shut?

  3. proflikesubstance says:

    Sometimes it just takes one person to break the ice, sometimes not. Social dynamics in a place where everyone is so out of their comfort zone can be strange.

  4. Can’t hurt to try and break the ice, “So what are you here for? I came for the juice and snacks.”

  5. People also tell you to stay positive.

    I sometimes wonder if this is for your benefit, or theirs. Feel how you want to feel, fuck anyone else.

    (Oh, that’s not fair, I know. People want to help. But sometimes, they should recognise that it’s rude to tell you how to manage your own shit.)

    • Zuska says:

      I think they mean well, on the surface. But I think a lot of that “stay positive” stuff is also for managing their own comfort as well. Rare is the friend who can just ask, “so, how are you doing?” and then just sit and listen to how you are feeling, and let you feel whatever you are feeling.

      I guess “stay positive” is the cancer version of “maybe it’s a blessing in disguise” which is what I got a lot of after I had a stroke and lost my job, mostly from people who were stressed out to the max at their jobs and thought the idea of not “having” to go to work in exchange for a stroke sounded like a good deal.

      Also, if your illness causes you to lose weight, people will congratulate you on how great you look, and ask you for your weight loss secret. Even when you tell them “a stroke and a fuckton of meds” or “cancer” they’ll still be envious (the first I know from personal experience, the latter from having read about it.)

      James Brown seems like a good antidote to all that. If you ever do make any connections with your comrades at the outpatient clinic, I would guess you’ll find something more helpful in the conversation.

  6. brooksphd says:

    next time, do a monster big fart and then say, “can anyone beat that?”

    Awesome ice-breaker. Works on first dates too.

  7. Dr. O says:

    James Brown sounds like a good idea to me. Might be easiest to break the ice with something really out there, then see if someone starts talking…

  8. Candid Engineer says:

    Thinking of you, hope your RBCs rebound soon.

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