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Communication takes on a whole new perspective when you are diagnosed with cancer.
Dealing with the many tests, doctor appointments, results and treatment visits can be stressful enough, but trying to keep family and friends updated by calling or e-mailing each person can add to your stress and take energy that may be in short supply.
A great way to stay connected with others, including family and friends, is through a secure blog site or website such as CaringBridge. This allows you to simplify communication, reducing the time and energy of constant updates, and keeps everyone in the loop with timely updates and information.
Creating a personal site allows you to invite close family and friends to read updates and leave supportive messages. In this manner, a network of communication and support is created for everyone.
A CaringBridge site can be created by you or a family member (go to www.caringbridge.org to get started). The service is free and it's a wonderful way to give and receive hope and support when you need it most. Private blog sites and websites can also be started at WordPress (www.wordpress.com) or Weebly (www.weebly.com). Not to worry if you're not very tech savvy; the sites are practical and easy to set up.
Some advantages to creating a personal site:
I would love to hear your experiences with blogs and websites that you have created for personal communication. Share any additional ideas and resources with each other.
Follow me on Twitter at @SherylNess1. Join the discussion at #livingwithcancer.
Sheryl M. Ness, R.N.
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thanks it's a great post
I'm a student in the university of Larbi Tbessi Tebessa
January of 2013, my husband walked into ER, and was diagnosed with Multiple Myeloma. He had total renal failure. Doctors worked to them them back, but everything failed. He is close to remission, but I just do not understand why, with all the new discoveries, and technology, a doctor cannot go in and 'unplug' his kidneys. The Mayo Clinic report stated that they were 'plugged' by MM. So, unplug them. He is urinating after a year, and is on the Cycler. All blood work looks good, just not filtering. He also works 40 hours a week and is 67. Due to loss of a job many years ago, he has to work.
I love the idea.ThankedEMR.
I just received the asripin email a couple of hours ago and without hesitation forwarded it to my regular mailing list. I immediately received a response from my cousin who wanted to know what dosage of asripin to take in case of a heart attack, an adult asripin or a baby asripin, 325mg or 81mg? It's an important bit of information that was left out of the email. Take two asripin and Don't lie down is pretty vague advice in an emergency situation. Does anyone have any information on dosage?
Great suggestions in creating a personal blog or website. Another organization to consider is www.KidsCanSurvive.org. They also provide free webpages with a couple of distinctions:
1. Raise funds- Create a donation button to allow supporters to donate. 100% of the support donated from the patient's page goes to the patient.
2. Social Network- The Community within Kids Can Survive allows it's users to create profiles and interact just like in Facebook or Myspace. This allows the user, whether they are the patient, family, or supporter to interact with peers in other interest groups.
3. Power of prayer- Within the Kids Can Survive Community there is the ability to ask for prayer in your personal profile, or you can submit that prayer to a network of prayer warriors. Either way, prayer is a powerful weapon in the fight against cancer.
4. You can create a personal domain that leads to your webpage / profile. So, when you tell a supporter your web address, you send them to your domain, like: www.yourdomain.org
Check it out for yourself www.KidsCanSurvive.org or the community at www.KidsCanSurvive.org/Community
I was diag. in 2006 with Breast Cancer. Been through chemo, surgery with reconstructive surgery and then 22 rounds of radiation. After surgery my cancer was upgraded to stage 3, cancer had invaded my lungs and lympatic system. In 2009 I started having pain in my hips and thighs. After MRI they found that it had mast. to my bones and had a right fractured hip. Now at stage4, then 11 more rounds of radiation and 12 months of Zometta. Iam told now that it is sitting stationary and has been for 3 years and 1 month. As long as it does not hit my vital organs I will be ok. I had a MRI done of my brain last month due to the lack of strength on my right side. Thank the lord that it has not gone to my brain. They seem to think it is due to the surgery that my right side is becomming weaker. Just living one day at a time and praying that it continues to stay stationary. Each and every day I try to keep things as normal as I can. By the grace of God Im still alive since Ive been told I have now out lived my odds with stage 4 Breast Cancer.
diagnosed edometrium cancer 2009 had 25 weeks of radiation. Currently having heavy menstration again. What's going on? I thought I wouldn't have this problem after radiation........
I have found great benefit from Caring Bridge in informing family and friends of the updates concerning my condition. It's a valuable tool everyone should take advantage of who are stressed trying to keep everyone updated.
My blog has been so therapeutic for me. I am a young cancer survivor. To get more blog ideas, feel free to read mine. www.kristinmburk.blogspot.com
Trying to find out if someone has or did have this problem when taking Taxol for breast cancer. First week had extremely bad neuropathy of hands and feet followed by 3rd week wobbly, balance completed off like I am drunk, unsteady head bobbling. Dr took me off of my chemo and is puzzled. I have HERPositive so still taking Herception. Does anyone know of someone else with this? Looking into another dr for nerves next. Help and thanks, Lee
A BRILLIANT IDEA. THANK YOU.
To the benefits of a cancer blog, let me add 1) convenient record, 2) searchable record, 3) psychologically beneficial way to process transition, 4) a critical tool to investigate where you may have made incorrect assumptions. I survived my blogspot password of original prognosis date, drew on postings to write an article for my journalism organization, and researched "becoming patient," a grounded theory to be published this year in a nursing journal. Blog on!
As an alternative approach, you might not want to tell your friends or family about your diagnosis and treatment, or at least limit those who know to just a few people. Then, life goes on as usual (at least on the surface e.g. visits to the doctor are "business meetings") and there is no additional stress in notifying others of your condition or treament or in responding to inquiries from them. The downside is you might feel you are deceiving your friends and family.
I find these two websites particularly helpful in dealing with Hep C, ESLD, Cirrhosis, and HCC--liver cancer.
http://www.dailystrength.org/ Daily Strength (Select the liver groups.)
http://cnlc.us/ Living with Liver Disease.
I have just finished 6 months of chemo and surgery and my blog really helped me to stay connected with all of my friends, acquaintances and family. The bonus was the comments and encouragement I received back. It was like a 'life-line' for me!
I concur. Follow us! We'll give you ideas,provide a forum & flip the script on the perspective of your diagnosis. Take back control!
I want to know strait up what the survival rate is for colon cancer stage 4
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