Wednesday, February 16, 2011

What About Everyone Else?

One of the things that has made the strongest impression on me as I move through this process is the fact that a serious illness affects so many people.  Yes, I'm the one who is sick (it still feels very odd to say that when I feel perfectly fine), but I'm not the only one who has huge challenges to face.  In a way, I think that cancer patients have it easier than their loved ones do.  We have the physical discomfort and some fears that are unique to us as patients, but our spouses, parents, siblings, children, and friends have to stand by and watch - and wait.  I think that's got to be the hardest part.  Uncertainty is no picnic.  I'm not having too much trouble right now with the idea that I don't really know what my outcome will be, but that's because I have some task to focus on pretty much every day.  With radiation 5 days a week and the infusion pump, two checkups a week with different doctors, emails from the support team (nutritionist, social worker, etc), I've got a lot to keep me busy.  And most of it feels like time spent productively because it represents one more step towards a cure.

My husband, though, has to try to continue to navigate his "normal" life at work, and then on top of that has had to take on more responsibility for managing the kids, more household chores, and all kinds of new worries that he couldn't have imagined a few months ago.  And while I get to be an active participant in all my medical appointments, he has to be a spectator.  I'm pretty much a control freak, so I know that role would be incredibly frustrating for me.  So far, he's handling it all beautifully.  That doesn't mean it's ever going to be easy for him.

My mother, too, is in that frustrating place.  She's a nurse, so she has the (dis)advantage of really understanding some of the technical details of my situation, and to complicate matters further, she's been through all this before with my dad.  I can't tell you how angry I felt when I first got my diagnosis - not on my own behalf, but because it felt so colossally unfair that my mom should have to go through this ordeal a second time in her life.  Of course, there's much more to be optimistic about this time around, and I remain convinced that I'm going to be fine.  Cancer treatment is not what it was 35 years ago.  Still.  Medicine may change, but people's feelings are what they are, no matter when they come up.

My children.  I don't even know where to start with this.  Of course I understand a lot of what they're feeling, because I've lived it.  I'm glad I have that understanding, for their sake, but even so I won't ever fully know what's going on in their minds.  I've just received a copy of what looks like a really nice DVD that features kids talking about their experiences with parents who are cancer patients, and I think it might help a lot of families.

I watch all these people around me work so hard to help and support me, and I worry about them.  But I'm also overwhelmed as I learn about all the resources that exist to help all of us through this process.  Good hospitals include psychologists and social workers as part of a patient's care team, and I've already met a couple of pretty fabulous people at MGH.  If you are a patient or caregiver and haven't had that experience, there are still plenty of places to look for help.

The Colorectal Cancer Alliance has a page dedicated to friends & family of cancer patients.  The National Cancer Institute's page on "Caring for the Caregiver" summarizes some of the challenges that families face in a very basic way - it's a good starting point.  I can't say enough about the wonderful program at Mass General on Parenting at a Challenging Time (PACT), which offers help to families affected by cancer and also to military families as part of the Home Base Program in Massachusetts.  There's a list of good resources for caregivers here at Cancervive.  The American Cancer Society's support system is also quite extensive, and offers services for everything from transportation to lodging for families who have to travel for treatment to help navigating the nightmarish maze of insurance coverage.  I have a lot to say about what happens to people as they try to figure out how to pay for all this, but that's a separate (and probably very, very long) post.

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