(no subject)

[stakebait]

Everyone's support and hugs and good wishes and prayers for mom's cancer has been very much appreciated. And extra double thanks to everyone who has shared their personal experience with cancer, it really helps a lot.

A lot of people offered more practical help, and it occurred to me that we might actually need some at some point. This is probably premature, but it makes me feel like I'm doing something and we'll need the info sooner or later.


[Poll #276514]

Comments

[gnomi.livejournal.com]

Heck - religious women up here order wigs from NYC; I can ask around my circle of religious female friends in the New York area and find out where they get theirs.

Sorry we can't help with the others; Boston's a bit too far for catsitting and all.

[stakebait.livejournal.com]

Thanks! I figured the religious Jews would be my best source for that. And no worries about the others. That would be a heck of a commute. :)

[treebee.livejournal.com]

Thinking back, the one thing I would do differently is not wear the wig. It was so liberating to lose it once I went off chemo & my hair started to grow back in permanently. (I would get peach fuzz between each chemo treatment, which would then fall out all over again!) Of course, that's 31 year old me talking & I was 10 when I started chemo, so it's definitely a different mindset now. I also don't mind having short hair now, but when I was young it was all about the long hair.

Well damn, this year marks the 20th since I went off chemo. Sometimes it seems like yesterday & others a million years ago.

The best bits of advice I can give are stay positive and don't be afraid to make fun of it. I truly believe that if I hadn't joked (and still joke) about my experience I would have gone insane.

I also meant to comment on your post about the doctor - very glad to hear that your mom is going to look for another one. Never let a doctor you feel uncomfortable with near you with a scalpel. If you don't get the good vibes, walk away. And if any doctors or nurses give you or your mom 'tude, give them 'tude right back! :)

[stakebait.livejournal.com]

Thanks, I'll pass that along. And congratulations on such a huge anniversary! We'll work on the attitude -- mom has some "benefit of the doubt" issues to overcome in terms of trusting a negative gut reaction, but so far she's doing great and everyone telling her to do this is helping a lot.

Mom will need to wear the wig for work, but I'll mention the possibility of not wearing it the rest of the time. Most of my orthodox friends don't like them either. :)

[anonymous_sibyl]

I talked to my mother tonight and she suggested some things your mother might want to do. One of the most important, she thinks, is that one of you should contact the American Cancer Society’s Reach to Recovery program. Call 1-800-ACS-2345 or go to the website and scroll down to the section “How it Works” and click on the link to find volunteers in your area. Reach to Recovery tries to match the patient with someone her age, who has gone thru the same things. My mother volunteers in our area, it’s something she’s done ever since she got her first “all-clear” physical. She also says, and I’m sure you’ve heard this a million times, that you should get Dr. Susan Love’s Breast Book. She calls that her bible. She also mentioned that most hospitals have breast cancer groups, and thinks it would be a good idea for your mother to check that out, if she’s interested, because they have a lot of practical information.

She thinks Reach to Recovery is the most important thing. I know she had a volunteer with her when she went through this, and she got a lot of practical information that you otherwise might not hear, from that person. While she’s been volunteering, she’s even gone to chemo with people, given them rides or whatever, if they need it. It’s an excellent support resource, from what I hear. (And I’m just a little proud of my mom for doing it.)

Mom and I are thinking of you and your mom. If you two have any questions you think we might be able to help with, let me know.

[stakebait.livejournal.com]

Thanks a million! We have the book already, but not the program yet.

[viciouswishes.livejournal.com]

When my grandmother was going through chemotherapy, there was a group at the hospital that had a seminar about wigs and they also sold some at discounts. (My understanding is that wigs are expensive.)

[stakebait.livejournal.com]

Thanks! And yeah, they are, but I think mom would be happy to spend the money to feel confident about her appearance.

Mer

[camwyn]

One of the women in my knitting group had breast cancer some years ago, and lost her hair to the chemo. Didn't wear a wig. Went with knitted caps instead- woolen in winter, cotton in summer.

Yrs. truly has knitting needles and will be done with the contest blanket she's working on eventually; want me to whip a few up, or something?

[stakebait.livejournal.com]

Hmmm. Might try one if you don't mind and you've got the time. Cotton, I think, since wool can be scratchy. I know mom is gonna want a wig at work, but that doesn't mean she'll want one the rest of the time.

She has kind of a big head, BTW. :) And she likes pink. I can chip in for the yarn, of course.

Thanks a million!

Mer

[rosefox]

I didn't know about any of this until I got your email (my LJ reading has been very spotty lately). You and your mom have my most sincere best wishes. The big C sucks ass.

My only suggestion--which others may have made--is that you keep track of significant dates: diagnosis, start of treatments, end of treatments, progress milestones. Don't make a big deal of them now, but make note of anniversaries, and remind her that every year of fighting is worth honoring and every year of life is worth celebrating.

[stakebait.livejournal.com]

Thank you. I hope you and sinboy had fun in NYC, and I'm sorry I didn't get a chance to see you. And nope, no one has suggested that yet. I suspect that's not really her style, but I will keep it in mind.

Mer

[rosefox]

We had a lovely time, and were sorry to miss you. Next time under better circumstances, yes?

I've known a lot of people who've battled life-threatening illness, including cancer, and all of them ended up finding an anniversary that was really meaningful. Sometimes it's the start of major treatment, or surgery, or "by all the gods I will make it to the end of the year/my next birthday/whatever"; regardless, it seems to be very useful and valuable as a milestone for a lot of people. I just thought it might be nice to have the dates handy in case one day she says "Hey, it's been about five years since [foo], hasn't it?". *)

[djinanna.livejournal.com]

I can't help with the stuff on your poll, unfortunately.

But I wondered ... has anybody suggested Gilda's Place to you? I haven't been able to find a website for them, but I know that the organization is all over the place -- here in Chicago and elsewhere in North America. It's a support organization for cancer patients and their families, and the Gilda is/was Gilda Radner.

If nothing else, your local Gilda's Place might be able to help with some of those questions above.

I found out about it through one of the cancer centers at my hospital when I was recovering from thyroid surgery (for thyroid cancer) almost 5 years ago. And I've seen mentions of it since.

(I just wish they'd get themselves a central website...)

[stakebait.livejournal.com]

Ooh, good call. I know there's one in NYC 'cause I used to pass it on my way to work. Thanks!

[coffeeandink.livejournal.com]

Hey you -- I am very allergic so can't catsit, but can do checkups etc. with advance warning. I don't drive, unfortunately.

[stakebait.livejournal.com]

Thanks! And there's no need to make yourself sick -- there's enough folks who aren't allergic. Or I may even end up taking her home to mom's. Just figured it wouldn't hurt to have options.

[villagechick.livejournal.com]

I found my way here because someone posted a link in my journal. My mother was also recently diagnosed with breast cancer. Stage two. She just underwent her first chemo treatment. I'm in NYC. It sounds like we are going to be going through similar things. I'll pass along any resources I come across, regarding wigs and other things. Feel free to e-mail me, if you need help. I've got an insane schedule but if you need a helping hand, I'll do my best.

Your mother and you are in my thoughts...

[stakebait.livejournal.com]

Thank you so much, I will. Since you're just a bit ahead of us I don't know if there's anything I could help you and your mother with, but if there is, please let me know.

Does your mother like her oncologist? We've picked a surgeon now, but not an oncologist yet.

Mer

[batyatoon]

As mentioned before, some of us live in communities where covering one's head is a daily lifestyle.

You mentioned above that your mom has a largeish head; so do I, and I've found shopping for wigs and hats to be quite tiresome, as the standard-sized ones often don't fit. Custom-sized wigs are easily available but rather pricey (which is why I don't yet own one). Custom-sized hats are a bit harder to find, unless you know Nice People What Make Hats (*nod to camwyn*); soft, stretchy knit hats are your best bet in that department.

In either case, feel free to hit us up for information collecting.


(And because I don't think I've said it yet, *hugs* to you and your mother both.)

[stakebait.livejournal.com]

Thank you tons!

Hope you've been having a nice Passover.

Info on custom sized wigs would be lovely. I wouldn't worry about pricey -- not only am I sure mom would be willing to spend the money for Really Good Hair, it may even be covered by her insurance.

hugs,

Mer

too long for the poll

[chaos-wrangler.livejournal.com]

Cat-sitting: Saying "hi" to kitty, feeding, and playing/stroking for a bit shouldn't be a problem, even after we move to Queens. A bit of lead time would help, but if you suddenly discover you won't be home in time to feed dinner or whatever, feel free to call on me/us.

Wigs: I don't know much and some/most of the people I'd think to call on have already volunteered. Hats, on the other hand... I crocheted those berets my mother wears all the time, and I've made a few "helmet hats" (covers the head kinda like a helmet so no or almost no hair shows), so if your mother would like, let me know. I'm also likely to be experimenting with other shapes for my own needs, so hopefully my repertoire will grow over the next few months.

There's also Locks of Love, which ladymondegreen may have contact info for. (This one occurred to me since there's some chance of me getting a haircut in the next N months, and I was thinking of donating to them the way she does.)

Driving: Sorry, can't, since I've still only got the learner permit.

Re: too long for the poll

[stakebait.livejournal.com]

Thanks! I'm sure mom would love a hat if you have time to make one, but if not, no big deal. Her head's on the large size, for what it's worth. I suspect a helmet hat would work better than a beret for someone with no hair to cover. Thanks a million!

Will check out Locks of Love, thanks. Though my impression is that that was for people who cannot pay, and mom can. I'll check it out, though. Maybe they take donations of cash.

[doeeyedbunny.livejournal.com]

If you need chauffering, just call. Grace (my car) and I would be more than happy to help.

[stakebait.livejournal.com]

Thanks a million. I might just. There's this thing where mom can get in to the city but not necessarily home. *hugs* Of course, she might end up getting discharged on Shabbas, but if she doesn't, I'll let you know. :)

Mer