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Did you know that Mayo Clinic is now on Facebook? If you found the Living with Cancer blog, you might like to also connect with other survivors on Facebook.
Mayo Clinic has a general Facebook page (simply look for Mayo Clinic), and the Cancer Center has a page that you can follow for our Cancer Education Program (look for Cancer Education Program-Mayo Clinic).
The Cancer Education Program page has updates related to patient and public cancer events, classes, support groups and resources. Check out the page and feel free to give them a "like" for continued support. This is another way to give feedback and share your ideas related to resources and support for cancer survivors. The Living with Cancer blog posts are also linked on this page for you to follow.
I would love to know how social media has helped you as a cancer survivor. How do you use Facebook and other social media? Feel free to also write or share feedback directly on the Facebook page if you have ideas or feedback that would help us to make your experience better.
Sheryl M. Ness, R.N.
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Dear Arlene, Just saw your blog and love to talk with you about cancer. What kind did you have and where are yu now with it? Mine is vulva cancer. Sincerely, Wendy
I am in remission of non- hodgkins lymphoma for 1 1/2 yrs now. Just lately i have been experincing fatigue & a feeling of weakness that comes & goes. I had that before finding out that I had cancer & did experience the weakness off & on shortly after chemo. Here I am experiencing it again for about four days. I just had two cataract surgeries. I don't know if that has caused the fatigue & weakness. Anyway I have an appointment with my oncologist a week from today. I have appts every 3 months yet. I am so afraid that due to these symptoms that the cancer might be back. It will be a long wait until next Friday.
I have Non-Hodgkins Lymphomia I have been in remission for a year now(which is a huge Blessing). I am still having to deal with fatigue/my fibro and arthritis are out of control pain wise/ can't seem to be able to get my strength or energy back. Chemo brain is my daily visitor.
would like to hear from those that share the same long term side effects that I do. or would just like to talk...thank you
Facebook has allowed me to reconnect with friends that I haven't seen in years. One even has cancer, so I can understand what he is going through. It has also allowed my friends to ask me questions on Facebook than they can in person. Interesting-huh!!!
I found that Facebook was a good place for me to write and kind of vent about my Cancer. I told my friends who wanted to read about it all of the things I was going through and how I felt and once I was done with treatments how the depression kicked in. I have many friends that sent encouraging words and I know you get lots of that from your family, but it sure helped hearing it from friends from high school or relatives that live far away. I read as much about my cancer so that I was in the know, I wanted to know everything to expect as no one in our family has had Breast Cancer. I put out on my site that day after my surgery that everything went well and I was already up and about. I let everyone know how my body looked and I thought my new breasts looked like aliens because I had a tram flap done. Once I got my nipples done everyone was excited for me also and some told me I should do a crazy thing with my tattoo that will happen in 4 months. I think that being able to share is a major part for those of us with cancer.. Like one of the others said, some people just dont' get it they try but if you have not had to deal with it you just dont' get it.
Very happy I can share and I know someone is reading it and understanding exactly what I am talking about...
Hi Mayo Clinic. Nice to hear you are on facebook TOO.
I think this is a good added value on facebook.
what is the mental difference with being a cancer survivor and living with cancer
RE: Social Media: I found Facebook to be very disturbing for me during treatment, and to some extent even now. I had to actually force myself to stay off of it for my sanity. All my old, athletic friends were still out accomplishing what I wanted to do but couldn't. I felt like my life was over and I was very jealous. I also had to deal with some obvious facial disfigurement so my self esteem was in the toilet. I stayed off the "cancer" websites because it just got to be overwhelmingly depressing - I was trying to concentrate on my successes, not whining about how screwed I was. My salvation was a supportive husband and a good psychologist who specializes in oncology. I think there is a "flip" side to social media - be careful.
I have bule duct cancer and would like to hear of others treatments. I had strong radiation 5 days in a row and nothing since. I feel like i am waiting while my cancer grows.
Anyone out there with bile duct cancer. Please reply.Thank you.
I have been fighting Multiple Myeloma since 2008 and it has been a up & down ride. I have always been the strongest one in the family, so everyone was quite surprised when I broke down in tears &depression. However, I have come back unto myself and have been fighting strong since. Many of my family and friends have said that I look good for someone with cancer, but it my determination besides taking care of myself as if I am not at all ill that shows to those outside. I have been through spine surgery and had to learn to walk all over again, I'm just getting back on my feet after being in a wheelchair since January. I have been in this battle for awhile and I believe with the grace of GOD, family and friends, I will continue until he calls me home....
I have used online support and also information found online to help with my 3 year battle. I do not use FB mainly due to my privacy concerns. I have a FB account but it is very limited. This support group has been life-saving as there were no face to face groups in my area. In a way social media and online options are nice because I find I can really open up and "talk". I most appreciate reading that many others have similar thoughts and fears. As someone stated in this trail, people who have not had cancer sometimes just don't get it, I know they try to but it is different when you actually are on this path.
Also, my family used Caring Bridge to communicate about my brother's battle and death while fighting Multiple Myeloma and it was a huge gift for him, our family, and the hundreds of people who knew him and loved him. It was very easy to use and keep other's up to date. It also allows photos which people enjoyed.
I am 42 yrs old female and have accepted Cancer in my life with positive spirits.since 3 yrs before,I was diagnosed for Post Cricoid Carcinoma wherein I have taken up 33 sittings of radiation and 6 cycles of cemos.Again diagnosed for Ca after 1 year and went through laryngo esophagectomy & pharyngo gastric anastamosis surgery lost my voice,within 5 months ca recurred wherein again induced with 12 cycles of erbitux cemos and 8 cycles of mitotox cemos,Now by gods grace I am free of Ca since 1 year and resumed to work and busy with my routine.The truth behind the success of my survival is the moral support I received through my husband,sister and my kids.I would like share all my thoughts shortly. 4 Steps to fight easily Cancer War are as follows Step1.Create a happy environment,never gain sympathy from others
Step 2.Build confidence,respect you and trust your body
Step 3.Keep yourself occupied
Step 4.Eat Healthy food stuffs
Oh, I forgot.. Is he on Coumadin? If he is, go to the Home page here at the Mayo Clinic and make sure he is n ot eating high Vit K foods, which will also cause clots and swelling. He should also have Pain Management, maybe Morphine 30mg, it works quickly. Talk with your medical team about these issues. I am also re-learning how to walk because I had to have surgery to remove a crushed disc on my spine due to the tumors, so to fight paralysis, I work out with PT in the pool which has worked wonders...from wheelchair to walker and then on to cane. Please speak with them..I came from a stage 4 (27000 cells) to stable (41 cells)...
Lucy, I fight swelling in both legs all the time during & after treatment. Has your husband had a Doppler lab? This checks for blood clots in the legs and pelvic regions. Also his food must be checked for high sodium, this works against the chemo & radiation causing swelling. He must stay active to circulate the fluid so it does not pool in the ankles or thighs. Sometimes walking up & down the driveway works for me, when I can walk it without tiredness. Also, since he is taking Lasix 2x a day, make sure he is drinking plenty of fluids, especially pure water. Last advice, it is better to cook his food at home, instead of buying prepared food from the stores. They have too many chemicals in them that contraindictate the meds and can cause the meds to work or not, besides leaving more chemicals in his body for the cancer to latch onto. Many blessings to you and your husband..
I had a FB page in my second year of my cancer fight. This page has helped me connect with Breast cancer survivors & friends, family. Even my college buddies from all over. It does help fight depression which can rise before you know it. However with all the prayers, blessings, and the jokes, I have pushed forward and am now in my 4th year. Still here!
Without the encouragement and support of my online friends, I honestly do not know how I would've managed to get thru my chemo or radiation. And, if you feel like "complaining" (to non-cancer people they sometimes view it like that) you can say anything you like and people are there to listen. Wide awake in the middle of the night????? Then just type in your status as "Is anyone out there - I need to talk" -- or some such phrase......and you'll more than likely receive a reply. Now that I'm free of cancer I'm online to provide support & encouragement to others. As well, I give some girls suggestions for friends in similar circumstances. Although I didn't have breast cancer, any time I see a "pink" photo or ribbon, I add them. As well, I send them a short 'bio' of what my cancer fight was -- and occasionally I get one back. Because I don't automatically add a friend request, I feel my introduction gives people an idea if they want to add me or not!!!!
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Thank you Lynn for responding. My husband is taking two Lasix a day. It seems it comes and goes but never entirely. He has stage 4 cancer. Started in the left lung and was only caught because of terrific pain in leg and inability to walk. He also had lesions in his head which with that cyberknife so far so good. Has no chest pain but is in constant pain with the knee. He had extensive surgery and replacement of femur. If you can think of anything else I certainly would appreciate it. It is so frustrating for me. Thank you
My oncologist gave me diuretic shots to help ease the swelling. It helped a lot. The steroids that were part of my treatment made me retain water.
What causes swelling in legs after radiation and chemo treatment and how to eliminate it. Thank you
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