Jyoung20 Posted August 31, 2008 Share Posted August 31, 2008 If you were a newly diagnosed patient and your oncologist gave you a lung cancer survivor kit, what would you like to have in it? We are preapring another fundraiser in November, Playing for a Cure Bowlathon, with Lungevity(Thanks Katie). One of the things that we are doing is putting together a Surivors Kit for newly diagnosed patients that we will distribute to local physicians to give to patients. What should be included in it? Give me some feedback please!!! Te bowlathon is scheduled for November 8th and 9th in Memphis. Mark your calendar and come join us on Saturday!! God Bless! Jamie Quote Link to comment Share on other sites More sharing options...
SandraL Posted August 31, 2008 Share Posted August 31, 2008 I know your fundraiser will be a huge success Jamie. Best wishes. Hmmm..what info to put in a survival kit. Kind of a twist on what to expect when you are expecting, what to expect when you have lung cancer hey? Constipation tips, what to expect after radiation, what to expect during and after chemotherapy, tips for dealing with hairloss, a list of positive quotes, what to expect after common lc procedures like draining of lung, bronchosopy, mediasteinoscopy, lobectomies, etc. Description of the 4 stages and common treatments. I bet you there are lots of stickies on this website with more ideas. Just random thoughts...I am sure whatever you put together will be great. You could probably throw some of those what to expect questions up here and get answers from a patient's perspective. Good luck putting it together. Sandra Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted August 31, 2008 Author Share Posted August 31, 2008 Thanks so much Sandra!!! Great ideas! God Bless! Jamie Quote Link to comment Share on other sites More sharing options...
Barb73 Posted September 1, 2008 Share Posted September 1, 2008 Dear Jamie, Your fundraiser will be a wonderful success. What else could it be? You are terrific! Wishing you the best on that. I don't know what could be added to what Sandra suggested. It covered quite a spread of important and vital information for the newly diagnosed and their loved ones. Reading about lung cancer survivors, their attitudes, and their tips gave Bill and me an uplift that we were not alone, and others "got through" treatments and more. What also helped me to help Bill were the books I bought to be able to know more about nutritional input. There is a certain sense of empowerment that comes from cooking "what might be helpful" and hoping to keep a loved one surviving treatments, etc. Just seeing that Bill has gained back energy following each treatment has been a grace. Reading material about lung cancer survivors, their attitudes, and their tips have given us an uplift that we were not alone, and others "got through" treatments and more. Being able to visit an online support community and telling the "story" and/or helping others to see that their fellow survivors and loved ones care very much is invaluable, as well. The continual gathering of as much information as possible as one goes along the journey regarding methods, treatments, and regimens which are arriving in the pipeline keeps one up-to-date. For me, knowing what questions to have asked along the way has become vital. In the beginning, those were not always apparent. Barbara Quote Link to comment Share on other sites More sharing options...
Connie B Posted September 1, 2008 Share Posted September 1, 2008 How about do they offer pulmonary therapy after surgeries. Are there any In Person Lung Cancer Support Groups in your area? I had a couple more, but.............. they left me at this time, will report back when they come back to me! I wish I could attend your Fundraiser, you'll make it one of the BEST! You Rock & Roll Girlfriend! Okay I thought of something else. A little notepad (to take notes) of sort or business card or book marker that says: DON'T EVER GO TO YOUR DOCTORS APPOINTMENTS ALONE Always take someone with you, or take a tape recorder with you and take notes. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted September 1, 2008 Share Posted September 1, 2008 Connie mentioned the one thing I was thinking. A notebook or small organizer to keep notes in, keep track of tests and procedures, test results, etc. I don't know if this is even remotely possible, but if one of the manufacturers of Boost or Ensure would kick in some coupons toward their products that would be awesome too as we know how important the whole calorie intake issue is. Maybe some recpies for high calorie milkshakes/smoothies? Good luck with the fundraiser! It sounds AWESOME!! Chris Quote Link to comment Share on other sites More sharing options...
Jyoung20 Posted September 1, 2008 Author Share Posted September 1, 2008 Great ideas!!! Keep em coming! This is going to be an awesome kit!!! I am so excited I am about to burst!!!! xoxo Jamie Quote Link to comment Share on other sites More sharing options...
Snowflake Posted September 2, 2008 Share Posted September 2, 2008 Information on the Corporate Angel Network Maybe some of the students can volunteer to cook dinner or do yardwork for one of the gifts? Sometimes, the mowing gets way out of hand with everyone stressed out and tired all the time...and dinner? Gift certificate to a local or big box book store, for something to read during infusions or the endless hours spent in waiting rooms... An MP3 player? I just saw one advertised for $10 that had 2G of memory... Not just a blank notebook, but a page labeled for the patient to enter important information - medications currently being taken and previously taken; surgeries; side effects; doctor names, numbers and office staff names; insurance information, including case worker... When I was taking pain meds and sleeping a lot, I found it hard to keep track of medications I was supposed to be taking. I kept a clock where I could see it and wrote down when the medication was to be taken, checking besides the drug name when I took it... Didn't O.D. on pain meds and didn't hurt much, so it must have worked... Classic old movies that are non-violent, something to do during the inevitable insomnia... I loved comedies. It hurt to laugh, but it hurt when I didn't, either, so I laughed while I cried... Comfy soft socks, soft hat with no seams... Good luck, Jamie! Becky Quote Link to comment Share on other sites More sharing options...
Patti B Posted September 2, 2008 Share Posted September 2, 2008 Jamie- Good luck with your fundraiser - I know it will be great. Of course, when I read this, the first thing I also thought of was a notebook to take to doctors appt. See you have that one covered. How about some skin care products for dry, itching skin after chemo - I know my bald head itched terribly. A soft toothbrush to use when mouth sores are a problem?? A scarf for the bald head. And how about one of those plastic daily medicine planner containers with all 7 days on it to help keep track of when to take meds when having a little chemo brain going on?? I will be back if I think of more!!! Hugs - Patti B. P.S. - your new avitar is great - you look absolutely stunning!!! Quote Link to comment Share on other sites More sharing options...
blueeye Posted September 2, 2008 Share Posted September 2, 2008 Definately a 7 day pill organizer, notebook pages to list medicines. That was always changing with my Mom and I would just let the nurses make copies. Small aloe vera gel bottles, Aquafor sample size tubes were both given to us by the radiation folks and I kept the small ones with us always. Hard candies would be good too. I think this is a great idea BTW! Quote Link to comment Share on other sites More sharing options...
ginnyde Posted September 2, 2008 Share Posted September 2, 2008 The 7 day pill organizer is a great idea especially if you get the one that has 4 compartments - morning, noon, dinner and night. Really helps you keep track that the meds have been taken. Also, if surgery is an option, a pillow to hold against the incision when coughing or sneezing or riding in the car. Great idea Jamie. Quote Link to comment Share on other sites More sharing options...
Ry Posted September 2, 2008 Share Posted September 2, 2008 Jamie- Have you ever seen the Lance Armstrong notebooks they give out? You can order them on their website. I have not seen the new improved notebook but the older version had dividers for tests, inspirational quotes etc. They are free -- you just pay postage. I ordered some to give out at our walk. You can also order in bulk the Cancer Resource Guides free from CURE magazine. These are very nice and you don't pay postage on those. Just go to the website. You can also get free samples of Nestle's products -- your local rep will contact you, you just have to go to the website and e-mail via the "contact us." Sounds like we're both on the same page with our upcoming events-- we're trying to have lots of stuff to give out to patients. Rochelle Quote Link to comment Share on other sites More sharing options...
nonni Posted September 26, 2008 Share Posted September 26, 2008 Hey Jamie.... You got some good tips already...this board alway's comes thru ..don't they?....They took all my tips....LOL...Anyway good luck on the fundraiser...I know it will be a success with you in it....BTW...first time I saw your new advatar...You look 'RAVISHING" my dear... '-) hugs...nonni Quote Link to comment Share on other sites More sharing options...
blaze100 Posted September 27, 2008 Share Posted September 27, 2008 Hi Jamie, I remember an overwhelming and immediate need to read about long term lung cancer survivors. I wanted to read everything I could about how others who have survived and how they did it. I didn't care about other cancers, just LC. Part of me truly believed that everyone who got LC died from LC. So a book of LC survivor stories - even if it is just homemade xerox pamphlet about local LC survivors. I really liked the Belle Ruth Naperstek visualization tapes. I got these from my counselor after I started chemo....but would have been better to have before surgery and before starting chemo. I listened to Belle Ruth's cancer/chemo visualization tapes every night. And I read over and over, Greg Anderson's book, 50 Essential Things to Do When the Doctor Says it's Cancer. These were some of my security blankets. Barb Quote Link to comment Share on other sites More sharing options...
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