November 06, 2009

Has Cancer Stolen Your Private Space?


Some people feel their body doesn’t belong to them anymore during illness; it belongs to the doctors.  With cancer, I didn’t just surrender my body,  I also relinquished the privacy of my home.

During surgery and treatments, my mom traveled to San Francisco and moved into my studio apartment.  My kitchen was in a separate room and she retreated there to read, quilt, and write letters, trying to give us each a shred of privacy.  I never asked her for this seven feet of privacy.  She probably needed an escape from caregiving as much as I needed to feel like a grownup with an ounce of independence.

I’m not a clean freak.  Some days it looks like a tornado tore through my home.  But during cancer treatment, I wanted everything in its place.  I suddenly liked things tidy, wanted the floor swept, and my bed made.  I wanted control over my domain.  At 27, I was suddenly roomies with my mom who I had not lived with for 10 years. It was a tug of war.  I needed and wanted her there providing household help and emotional comfort. But I also wanted to feel like an adult with a life and a home of my own.  I wanted to cry alone sometimes and to eat cereal for dinner without being questioned.

Lots of patients in my book Everything Changes adapted to new living situations during treatment.  Some had a revolving door of friends with keys to their house dropping by to help with errands.  Others had to make a hospital room their home, and some moved in with parents or cousins.  We all found ways to stake out territory in our less than private shelter.  During my second treatment, when friends stopped by with food, I got good at telling them when I wasn’t well enough for them to stay and chat.  Dana’s mom posted a large sign on the door of her hospital room instructing nurses when they could and could not enter.  When Wafa’a moved in with her folks she lit candles and listened to Nina Simone making her bedroom a retreat from the rest of the house.

In a life or death situation it’s easy to say that all we want is to be healthy.  But I think there’s a whole lot more that we can want too.  Privacy was at the top of my list.

Did you lose your private space when you became ill?  How did you cope with it?

For more strategies on coping with cancer and privacy, read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s.

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  1. Alli Says:
    November 6th, 2009 at 2:49 PM

    Such great timing for this blog. I am leaving my condo tomorrow and moving in with my parents. It is going to be very tough. At this time I am still mobile enough to do stairs so I will have my own bedroom and my parents are moving furniture around so I can have my own bed and some of my stuff in my house. Eventually I will probably end up living on the first floor with a hospital bed in the dining room. I have lived on my own for almost 13 years. It will be a big adjustment to be back at my parents. Not only being dependent, but losing my own space and ability to set my own schedule. Don’t yet know how I will cope, but would love any advice that people can give me.

  2. Alli Says:
    November 7th, 2009 at 9:25 AM

    Inspired by Kairol’s blog and my own comment I wrote a blog post about moving out of my parent’s house.

  3. Kairol Rosenthal Says:
    November 7th, 2009 at 11:33 AM

    Alli, Thanks for sharing your story and for your links. I’m rooting for you during this incredibly hard transition. The best advice I received about moving in with your parents came from an interview I did with Diana Ulman in my book Everything Changes. Diana was the mom of a young adult cancer patient and she reaches out to a lot of other parents who are coping with their older kid’s cancers. She suggests having a sit down at the very beginning of the move where you and your parents talk about expectations. The last time you lived in their house you may have been a teenager with rules about when you could come and go and how often you needed to check in. You’re an adult now with a whole different life. Talk about these expectations before they become an issue. Also talk about your potential need for space. Are there times you would like to be alone in the house, or be able to stay in your room with the door closed and not be bothered? Do you want to eat on their schedule or do you need them to be okay with you eating at independent times? Hashing this stuff out before hand can be really helpful in reducing stress. Keep us posted! Kairol

  4. Pat Steer (Gaelen) Says:
    November 7th, 2009 at 2:25 PM

    I have to agree – on many days (especially the three days right after chemo) privacy was the *main* thing, maybe the only thing I wanted. And it’s been like that from the beginning, from the first treatment. I would let my calls go to voice mail, and then get hysterical repeated messages from some individuals because I hadn’t picked up. It was a learning experience for them (for some, a bigger learning curve than for others!) to recognize that there were days when I simply *couldn’t* focus, chat, stay awake.

    Unfortunately, during my first two regimens of chemo, my dad was deteriorating in worsening dementia. He would call on my bad days, and for him, I would try to focus – but often, chemo fatigue won. Thinking about those calls now is gut wrenching; I know he didn’t know what was happening – but I was too sick to be patient, too sick to try to get him to a place where he could understand, and no one else in my family seemed to ‘get’ that I just couldn’t manage these conversations with dad on day 3 of an infusion. I wish I could have handled it better, but those conversations are done, my father has passed, and there’s no ‘fixing’ it. All the memory can give me now is (hopefully) a blueprint for how to handle things going forward.
    And I will eventually need to handle those things. Like Alli, when my condition worsens, I’m going to have to figure out how to function on my own, and when that can’t happen any longer, I’m going to need to move in with someone. Not wanting it to happen isn’t going to change the eventuality that it can happen.
    Alli – I wish I had some wisdom for you. I have spent some post-op time in my sister’s house, not always with kum-ba-ya-happy results. I am, frankly, terrified about the prospect of losing that much control over my own life. I don’t know if it will help at all, but Alli, you have my strongest thoughts.

  5. tara Says:
    November 7th, 2009 at 2:30 PM

    My parents begrudingly let me stay at their apartment after my 2nd chemo since I was too sick to be alone. And it was crazy hard! One because they didnt really want to help, but mostly cause they have OCD, my mom much worse then my dad. But the “rules” were insane and there was no negotiating or nice rational sit down talks, ha, they’re too dysfunctional for that. It was basically, you don’t like it, you stay alone at your apartment.
    But I understood that and actually tried to be good about the crazy OCD rules, so they wouldnt get crazier. But alot of it I just physically couldn’t hack. I couldnt eat on their schedule. I couldnt sit up at a table cause i was too weak and dizzy, but my mom would freak out if i sat on the floor, even in the kitchen, in case a crumb dropped or something spilled. I couldn’t shower/bathe when I wanted to cause there was a whole cleaning ritual that my mom had to do after and she only wanted to do that at a certain time of day, so if I wasnt well enough at that time to bathe, I missed out.
    None of my friends or ha, even the social workers knew how I dealt. I guess I tried to see some of the humor in it, but mostly I was just too sick and would just try to lay down and retreat,and often be without whatever it was I needed or wanted, just to try and keep the peace. I often felt I shouldve made a documentary when I was there about the inside world of OCD;-)
    But even I made it through, so hang in there Alli and anyone else going thru it. A crazy adjustment, but I didnt have a choice, so what can you do, you get thru it.

  6. tara Says:
    November 7th, 2009 at 2:39 PM

    Actually another question for anyone who might have an answer. Sorry if it’s a little off topic but Pat’s post brought it to mind. I’m single, live alone and didnt have anyone else to help me last time but my parents. Since they got too stressed with the whole ordeal and have their own health isses, they said they couldnt help me again if the cancer came back.
    I’m currently living alone, done with treatment, but still too sick to work, etc. I’m having some additional symptoms lately that are making me fear recurrence and have been trying to figure out how I’d get by if I had to undergo treatment again. Last time I was too sick to be alone and I supposedly wasnt even getting the “hardcore chemo” yet. So what do people do who really are alone and have no one to help?
    I’ve looked into those ACS sponsored housing places, that you can stay out during treatment if youre out of town, but it said you still need a caregiver with you. Do hospitals ever house people for the duration of their treatment?
    Just trying to figuring out what to do, cause it seemed first time round, since I wasnt a senior citizen, I didnt qualify for anything and everyone expects you to have family to rely on, but what if you don’t?

  7. Reality checks come in threes « Life Out Loud Says:
    November 8th, 2009 at 1:52 AM

    [...] started my morning by reading Kairol Rosenthal’s latest post on Everything Changes – where she asked readers if cancer had ever intruded into their private spaces. That led me [...]

  8. Pat Steer (Gaelen) Says:
    November 8th, 2009 at 9:23 AM

    Tara, are there assisted living or rehab facilities near you?
    That might be a solution for the time when you definitely need help, and you could transition back to your own home with visiting nurses.
    One thing I’ve done since some of my own living-with-family post-op experiences is develop a strong network of friends who have, in some cases, offered me their homes for recovery.
    Remember that ‘family’ doesn’t have to mean related-by-blood. I spend more time with some of my friends, especially the ones I work with, than with anyone else, and we are family of our own making.

  9. Kairol Rosenthal Says:
    November 8th, 2009 at 10:09 AM

    Tara – I think this is a great question to pose to your hospital social worker so you can see what resources are in your area for people in this situation. And probably smart that you are thinking about this before hand so that if you ever do need it, you’ll already have a good idea of what is available. Here are some of my thoughts based on suggestions above, but please do research them for yourself as I am by no means an expert on medical housing and this information is merely anecdotal.
    From my experience of placing family members in rehab facilities, they are extremely expensive. If you have insurance it will only cover stays for very specific ailments and they kick you out asap, much the same as hospitals. With assisted living, licensing most often prevents them from taking people who need medical care. Those folks usually go to a nursing home or rehab facility instead of assisted living. Some people do stay in hospitals for the duration of chemo if it is medically necessary as in-patient chemo. But again, if it is not medically necessary, it would be hard to swing. I am curious if you have a network of friends that you can patch together into a schedule where people take shifts taking care of you in your own home. I am also curious what your financial means are (no need to disclose!) There are varying degrees of in home help that you can hire, anything from private companies that place nurses, to state assisted programs that send out aids to your home – these aids are usually unskilled and legally unable to perform nursing duties. Do you have any other family members who might not be as close but would be willing to step up for you? A guy who I interviewed in my book had a similar situation where he was unable to stay with his mom and dad. He moved in with a cousin and his wife instead. You are not alone in this. It is a real problem for people our age and super stressful!

  10. tara Says:
    November 8th, 2009 at 1:48 PM

    Thanks everyone for your responses:-) I think I will start looking into some of things mentioned. Although I’ve learned to be good with not getting ahead of myself and dealing with things when they happen, in this case, I just think it’d be less stressful to try and have some sort of idea/plan in place, given my situation.
    I thought maybe the SW’s wouldnt want to talk with me until it happened, but maybe not, I’ll give them a call. Can’t hurt to try and brainstorm.
    As for friends, yes, they are definitely more family than my actual family. Ha, even random/lesser known acquaintances have been filling that role more than blood relatives. However, they still have their limits. Problem is most of them, although emotionally supportive, live an hour or more away. And of course have their own lives, jobs, spouses, kids to deal with.
    When I was first diagnosed and my parents said they couldnt help, I sent out a humble mass email to my friends, ha, actually doing what you said Kairol, seeing if they could take “shifts” and watch me on the weekends, I was planning to get Friday chemos and thought weekend watching was all I needed.
    Unfortunately it turned out to be more, I was much more sick than anticipated. And although everyone wanted to be helpful, even trying to fill just the weekends wouldve been hard. not everyone could stay a full weekend, so i’d have to use 2 people in a weekend, and I wouldve had to use people alot. I know it wouldve been too much for them. I know people want to help, but I also knew what would be involved, and I know some of them would’nt have been prepared for that.
    Financially I don’t have the means to pay for the amount of private help I’d need, but aren’t super low in income yet, due to savings(all I have and what’s gettin me by), to qualify for some really low income based services. I guess I’m kinda stuck in the middle right now, being a little bit over some of the cut offs. I know I can lose my insurance at any time, so if that happens, things will get more complicated.
    Anyway, alot to think about, thanks for the advice!

  11. Rich Devlin Says:
    November 8th, 2009 at 7:27 PM

    My heart goes out to you. If some of our political representatives, who are simply polishing the bumper on health care reform while the transmission fluid bleeds on the ground, could spend an afternoon with you, maybe there would be real change and you would get the help you need.

  12. tara Says:
    November 9th, 2009 at 1:10 PM

    Thanks for your thoughts, Rich. And yes, if only we could get the people in this world who really might have the power to help or change things, to listen and care about our stories. A crazy world it is, so many people hurting from so many things,cancer just a small part. But I digress.. in my experiences, sadly I’ve found the ones who really listen and really want to help, never actually can. While the people I need to “break through” to, like to my doctors, for one example, I never can reach.

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