Lung Cancer Survivor Kits

• By molar
• Posted August 31, 2008 at 3:01 pm

If it was lung cancer, I would like info about this site and similar ones. I found this site 6 months after diagnosis just by accident. A book that costs only $4.00 by Richard Bloch, "Fighting Cancer." It gave me more hope than any other book I have read. Relaxation CDs would also be nice.

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• By RiaRia
• Posted August 31, 2008 at 3:11 pm

definitely the link to this site, some survivor stories, a stay away from statistics speech!

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• By LTLCS
• Posted August 31, 2008 at 3:31 pm

I would like info., on any kind of IN PERSON Lung Cancer Support Groups in my area. This was the first thing I asked when I started my journey, but back then there were none! There is NOW being I started the first ever in Minnesota! SMILE!!!

I would also like to know if there is any kind of therapy that is offered after lung surgery. They offer it for heart patients and they should for those that have a lung removed or part of a lung removed as well.

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• By D1
• Posted August 31, 2008 at 3:57 pm

LeShan's book: Cancer as a Turning Point....

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• By J-me
• Posted August 31, 2008 at 4:06 pm

THese suggestions are great!!! Keep em coming!!

I love the yo-yo idea!!!
We have planned to included online as well as local support group information.

I think the books are a great idea!!!

ty
J-me

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• By terryl
• Posted August 31, 2008 at 5:17 pm

When I was newly diagnosed I got such a care package from a friend..in it were sugar free hard candies, caffeine free herbal teas, one of those little portable battery operated fans, a book on tape ( cd actually) and some pedialyte. I think also would be good some good skin lotion, perhaps a nice warm soft cap, and t shirt that says " cancer sucks!" A good comedy cd or video, a copy of "Eating Well Through Cancer" by Holly Clegg and Gerald Milettello, M.D. ( a cook book actually, with easy recipes and recommendations for things like constipation and nausea or putting on weight). And definitely the address to this web sight for a little added support.

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• By erinroro
• Posted August 31, 2008 at 5:18 pm

J-Me,
Although I don't follow everything in it, one of the best books I read is 'Crazy, Sexy Cancer Tips'. I am sure you, and the others here, are familiar with it. It has it's serious points, but it also has some 'hey, you've got cancer - have fun with it' points. Of course it is directed toward women, but I think that men would also appreciate some of the suggestions.

Erin

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• By texaszan
• Posted August 31, 2008 at 5:53 pm

A relaxation CD, a pill keeper, a schedule book for appointments, info on drug discount programs.

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• By D1
• Posted August 31, 2008 at 9:30 pm

Jamie...

I think info about wigs.....for many the devastation of losing one's hair is the worst. And, if people want good wigs, they should see the wigmaker BEFORE their real hair falls out. Some, are ok with the shaved head or the scarves. For others, the bald head is devastating. So, the wig info is a must......

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• By Angie-in-SC
• Posted August 31, 2008 at 9:49 pm

Wonderful suggestions. J-me, I love the bowling idea. I would love info. on how you organized it. My mother loved to bowl. I wish that I could do something like that.

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• By TinaIrena
• Posted September 1, 2008 at 7:04 am

Jamie,
For me the best thing my Oncologist could give me in a Lung Cancer survival kit would be a personal contract promising the disclosure of tests results as soon as they are available. I don't think our doctor's fully appreciate the terrible anxiety we go through waiting for scan results and the effects it has on us emotionally and physically. It seems to me that it would be such a small thing for them to offer us for our own peace of mind. Give us back some of the control over our lives that was so quickly ripped away by this devastating diagnosis.
TinaIrena

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• By TinaIrena
• Posted September 1, 2008 at 7:07 am

A Lung Cancer Patients Bill of Rights!
That"s what I'd like to see.

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• By jadams
• Posted September 1, 2008 at 10:03 am

Along with the appt book perhaps a book that could be used for a journal. I liked the pedialyte idea but what about ensure. Possiblity of getting the company involved in the cost? Free advertising. Posssibly the business card of a lawyer that does all the legal papers that need to be done at a reasonal rate. I know when I was diagnosed I knew I had to take care of these things but I'd never needed a lawyer before - who to turn to? Yep that's what we need - some networking between our doctors and other professionals.
Julie

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• By susiebunny
• Posted September 1, 2008 at 1:19 pm

What was helpful for my husband and I, was someone sent us a prototype of something they were creating, and with some of my own thoughts as well: a large binder you can take with you to all appointments, with an attached hole puncher (very cool and useful), sections for treatment, meds, appointment, lab, reports, notes, a business card holder, etc. We took this along to oncology, respiratory, primary, surgery, hospitalzations, etc, as we were asked the same questions and could pull out what was needed. We used this binder to note what the treatment plans were, so we could always refer to this - helpful when my husband's oncologist would change his mind about what his treatment was and we could point to these notes and ask informed questions.
This book was great for us to keep somewhat organized. Also would be helpful: information about where to get support for family, caretakers, etc; Where to find trials/lung cancer research; Articles about living with LC - from/for the survivor as well as for everyone else. And maybe articles about how to talk to your doctor as well. Thanks for compiling this info :)
Susie

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• By GarnetNE
• Posted September 1, 2008 at 6:24 pm

At my dad's first chemo appointment, they gave him a little clear polycarbonate water bottle with measuring lines on the side. I know staying hydrated is really important, especially to deal with the side effects and prevent infection. And the measuring lines are great for mixing protein drinks, metamucil, etc. Whatever you happen to need to get you through that day! Puzzle books or something similar would be great for folks who have 6-8 hour chemo sessions.
- Nikki

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• By frenchy
• Posted September 1, 2008 at 10:10 pm

My oncologist actually did give me a tote bag with a notebook in it with dividers for appointments, notes, etc, some lotion, a support groups name, a flyer for local wig shops all which was great, what I would of really liked to have had was something telling me just what to expect from my Chemo...I was scared to death and have since seen people actually have anxiety attacks and unable to go through with it. I was very lucky to not have that bad of an experience..hair loss yes, nausea yes but I was expecting a whole lot worse. Something to put your mind at ease. I also took a CD player with books on them because I would often fall asleep reading.

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• By jmejia8913
• Posted September 2, 2008 at 1:16 am

when my mom was dx in june they gave her a pretty little blue book it simply said "hope" inside was stories and pics of local cancer survivors all ages,stages and kinds with pic and locations all local even some we recognized that made me feel better that we were not alone .

jenny

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• By stephanie410
• Posted September 2, 2008 at 10:17 am

A list of websites, with descriptions (which ones provide support, which ones provide information, which ones provide info to family/friends...). In the last category, be sure to mention CaringBridge.org and CarePages.com--families and friends love this tool because no one wants to bother you (one of the elements of isolation in all this).

I love the ideas of the yo-yo and a Lung Cancer Patient Bill of Rights!

As a side note, livestrong.com offers free (except for S&H) extensive binders with all the elements described earlier. (The American Cancer Society did send me something similar, but the livestrong version was more comprehensive.) Go to http://www.livestrong.org/site/c.khLXK1PxHmF/b.2662947/k.9791/Get_Organized .htm

Great idea to create this kit. Perhaps all cancers are isolating, but lung cancer just seems particularly so because it is so deadly and so blame-ridden.

--Stephanie

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• By Bette_Tx
• Posted September 2, 2008 at 10:47 am

All of these are great ideas. After I met with my oncologist before chemo, a nutritionist came in and talked to me about eating during chemo and a booklet regarding chemo and proper nutrition. This booklet was from the American Cancer Society.

They also gave me a tote bag which included a soft blue blanket to cover with during chemo, a little clear polycarbonate bottle. a handbook for keeping appts. and writing down symptoms/questions for my doctor, and some pens. After my chemo, they gave me a Certificate that said I had won a Purple Heart signed by the chemo nurses .. I indeed felt like I'd earned it.

I would also recommend the book, Cancer Is A Word, Not A Sentence, by Dr. Robert Buckman, MD.

Bette

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• By laurieg1
• Posted September 3, 2008 at 10:36 am

I just love all these positive things, because when you first hear the news, I feel like we run to the internet. As everyone knows for the most part, you find the most depressing statistics and bad news. The more positive information the better for all. Also there is a small book by Connie Payton.Stronger Than Cancer is the title. And I am wondering if they might even donate them because they are using them at the Cancer Treatment Centers. I was on vacation and found it in a gift shop. I bought this simple little book and went to the beach. It brings people peace and good feelings. Just a thought!!

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