Side effect update: Slept fairly well last night - was only up twice, which is an improvement. I woke up with a headache, though, so I'm sitting on the couch waiting for the Advil to kick in. *sigh* Gotta love chemo.
Random thought #1:
One of the things that I'm having trouble remembering this time around is that things are different. As much as I put words to the concept that this time 'round isn't like last time, I find myself continuing to compare what happened this time to what I expect will happen this time. I think this is both good and bad. Good, because I'm aware of the way my body tends to react differently than everyone else to chemo, meds, etc. Last time, I learned that if there's a side effect of chemo, I'm probably going to get it (even if it falls into the "only 1% of people have this happen" category).
Now, having said that, last time, I was getting full doses of chemo every two weeks, which meant the chemo built up in my system and I was mitigating side effects with more side-effect-inducing prescriptions. This time, I have an entire team on my side, helping make sure that my side effects are as minimized as much as possible. Last time, I was sick all the time. This time around, I feel really good after a few days of ickiness, and even then, (with the exception of the last day this past round), the ickiness isn't terribly awful.
I find myself going back to the same thoughts, feelings, expectations of last time, almost to the point of ignoring what I know in my head is right. During the down days last week (Wednesday and Thursday), I found myself feeling so alone, so morose, so depressed. I had to remind myself (isn't that odd?) that I wasn't alone, that I have an entire army of people behind me, all over the world. I found myself back in the very first days of chemo last time 'round, where I thought I was the only person going through this at the age of 30-something. Thank God for social media - you all remind me daily that I'm *not* alone, that I'm one of many. One of a courageous, amazing group of people. So, thanks.
I'm really trying to keep the past in the past, and remember that this time will not be like the last time. This time will be better - it will be different. I don't know what the end result will be, but I'm hopeful that Mission:Remission will be successful. I'm hopeful that I've found a team in CTCA that will provide me with the absolute BEST chance at kicking this thing in the ass, once and for all. And, I'm so grateful to have y'all on this journey with me.
Random Thought #2:
I have had some people contact me, saying that they meant to get in touch but were afraid or didn't know what to say to me. I've had others ask me what they should say to a newly diagnosed/rediagnosed friend or family member. Oftentimes, people will not contact the person, for fear of saying the wrong thing(s).
My advice to you? Make the phone call. An email is nice, a text is okay. But, if you have a few moments, make the call. You may get sent to voicemail; leave a message. Tell them that you are thinking of them. Just say hi. Remind them that they don't need to call back (and mean it). When you say "Is there anything I can do?", *mean it*. Consider offering to do something tangible - one of the kindest things people have done for me is offer very specific things. If you aren't a great cook, offer to clean a room. Offer to take the kids to the park. Ask when you can help with laundry. Be very specific about what you can/are willing to help with.
Most importantly - don't forget about that person. In my experience, tons and tons of people will touch base with you when they find out you're sick, and then it dies off. (Disclaimer - I don't say this to get attention, or to have a ton of people call me. It's just truth.) Make a note on your calendar to call that person three months from now. Then, just say hi. You don't have to offer anything (unless you really want to), but let them know you're thinking of them.
On that note, I found this on-line (here), and it's quite accurate (for me) on how to talk to a cancer patient. I hope it helps you.
1. I
don't know what to say.If you're feeling
uncomfortable talking to us, we can probably tell. The best way to dispel
awkwardness is to admit that you feel awkward. It's not our job to put you at
ease, but maybe you'll feel better if you confess.
2. This
is the worst news ever!Of course you're upset to
hear about your friend's diagnosis. It is totally fine to have strong feelings
and to show them. But really, your friend should not have to reassure you or
take on the burden of your feelings. I've kicked my family out to go cry in the
waiting room during bad-news doctor visits. This is, first and foremost, my
tragedy, and I can't be strong if the people around me are falling apart.
3. Is
this a good time for you to talk about it?We're
all smiles in cancer land. We get complimented all the time for our positive
attitudes. But sometimes our optimistic public face is in danger of cracking.
We want to know that you care about us, but you can help by not pushing too
hard for The Real Backstory in, say, the grocery store check-out line. Tell us
you want to know more, and let us decide when we're up for that conversation.
And sorry, you have to accept it if we don't want to talk about it at all.
4. Here
are some ways I'd like to help you.I like it best when
offers of help are very specific. "I have a whole bag of fun wigs at home.
Do you want to borrow them for a while?" or "I'm taking my kids out
for ice cream later. Can I bring your kids along?" Then I can say yes or
no without having to think of something helpful for the person to do. Also, when
I get a vague offer of help and then I make a specific request, it makes both
of us feel bad if the person doesn't want to do what I've asked.
5. Do
you need someone to coordinate volunteers?The
first time my cancer came back after a 20-year hiatus, I was a busy working
mother and was totally blindsided by the whole thing. My friend Anne offered to
coordinate parents at my son's school to make meals for our family. The
coordination was a bigger gift than the food itself. If you're good at this,
you might want to offer to coordinate the help that comes in. Offering to help
with information control is also good. My partner does this for me. He's
willing to take phone calls or answer email from concerned friends when I'm
feeling like a hermit. If you can offer this, it might take a huge burden off
of the patient.
6. May
I pray for you?Many people find it comforting to know you're
praying for them. To me it feels like you're proselytizing. But the rare person
who asks me instead of TELLING me they're praying for me always gets a big fat
yes. As long as you're not shoving your religious views down my throat, I am
happy for you to pray if it comforts you to do so. Unless you know your friend
shares your religious views, ask how they'd feel about having you pray for
them.
7. You
look great.We like to hear this as much as the next person, but please,
only say it if it's true. We might be bald. We might be scarred. We might have
puffy faces from steroids or bruises from having blood drawn. So if we look
like shit and you lie about it, we can tell. But I do like to hear it when I
look sort of okay.
8. No
strings attached.I love to get letters, care packages, and
email. It helps to feel loved, and I especially appreciate the people who let
me off the hook. The emails that say, I wanted you to know I'm thinking of you
but you don't have to write back. The phone calls that say, call me back only
if you want to. The gifts that say, no thank you note is needed. I know I sound
like a jerk. Someone sends me a gift and I can't even be bothered to write a
thank you note? Returning phone calls is a burden now? But when I have very
limited energy, I want to save it for my family and my garden and my writing.
Cancer patients still have an obligation to be nice people, but maybe they
don't have to follow all the social conventions perfectly right now.
9. Take
cues.Listen to me carefully. I might have just told you some really
scary news about my health, but what else am I telling you? Am I being blunt
and painfully realistic? Am I being cheerful, downplaying the seriousness of
the news? Am I avoiding giving you details? Your job is to follow my lead. You
can ask questions, but if I give you vague answers you need to drop it. It
means I've told you as much as I want to tell you right now. If I'm optimistic,
be optimistic with me. If I'm in the mood for gallows humor, don't try to force
me to look on the bright side.
10. Say
nothing.That's right. I love it when people say nothing at all about my
cancer. I'm tired of talking about it. I'd be curious to hear how other cancer
patients feel about this, but I find it refreshing to be treated normally. That
doesn't mean you should ignore my illness, but it can be a nice change to have
an interaction with a friend where it just doesn't come up.
Above
all, just do the best you can, and if you aren't sure you're giving the right
kind of support, ask your friend how you can do better. Cancer patients may be
walking an emotional tightrope a lot of the time, but we can recognize and
appreciate good intentions, even if the things you say aren't pitch perfect
every time.
This is another site I found
outlining things NOT to say to a cancer patient. Yes, I agree with them.
:) There are a lot of them out there - feel free to look them up,
and take heed from them. Most are written by cancer patients, and are
their personal feelings. Thankfully, we are a vocal group.
Okay -
enough babbling from me today. My headache has eased, and I'm going to
get ready for the day. Off I go - make today awesome. I hope to.
Comments:
I'm
Nic. said...
Yes.
I will make today awesome. Best advice ever.
April
27, 2012 at 7:43 AM
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