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@colleenyoung

@ikampel2 managing a chronic illness is challenging enough, but to be without support from friends and family is rough. Let's start with getting you a little virtual support here on Connect. I'd like to start with getting to know a bit more about you. How is MDS being managed right now? What treatments are you getting? What is your biggest challenge or concern?

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Replies to "@ikampel2 managing a chronic illness is challenging enough, but to be without support from friends and..."

Sorry about the late post, but now have Basal Cell Carcinoma on my hand that needs to be cut out completely.<br />
I never go out in the sun without being covered up, but this could have been started along time ago, according to the Dermatologist.<br />
It seems never to end, I do have to wait until next week for my monthly Oncologist visit to get approval and get the latest CBC.  Also, I used to suffer from B-12 deficiency and nobody could figure it out for 1 1/2 - 2 years, so I have mild aphasia as a result.  I was on my way to Dementia until I started taking these B-12 pills that you could only get from the Vendor.  They have worked, thank goodness.<br />
However, now I am loosing 200 points on my B-12, last month was the second time this year this has happened (January was the other time).  I am waiting to see if this is a trend or just another unexplained anomaly.<br />
Being alone and abandoned by my so called "family" who thinks they know everything about Cancer because they know a patient or two.  I now refer to them (just 2 brothers) as relations as in they are related by blood but they basically don't care.<br />
Ivan

From The Publication "8th Annual Cancer Guide"  <br />
Article Title - Dealing with Emotions<br />
(You really should read the entire article - it's short)<br />
Page 20 - bottom right side<br />
The Negative of Positive Thinking<br />
As the patient begins to tell others about their diagnosis they could feel pressure from others to maintain a positive attitude (you know go to Senior Centers, blah, blah, blah), which can be especially difficult when patients are scared, anxious, afraid of catching a disease or not feeling well, etc.<br />
False optimism is not only unrealistic but an unnecessary burden to the patient.  There is no solid evidence that emotional outlook affects survival, yet people unaffected by cancer often expect and encourage the patient with the disease to stay positive despite how the patient is really feeling.<br />
Patients reaction to cancer (including other multiple health problems) differ greatly.  People should remember that it's the patient's experience and there is no need for the patient to feel they have to please others (idiot relations) by the way they cope with their feelings.<br />
**********************************************************************<br />
If you think that all of this hasn't caused me stress, then your not sitting where I am sitting.  It's disgusting to know that there are many people whose families have abandoned them.  As I talk with different Cancer Support Agencies, all I hear from them is that this problem happens a lot and basically they talk about this problem (no family support) all day long to other cancer patients.  That's one of the biggest reasons that they exist.  <br />
Doctors have no time for this and of course inexperienced Social Workers are helpless.  There's nothing like talking to someone who knows first hand what I am going through.<br />
I still haven't found that person who lives alone, however I am not stopping in my quest to find someone like that.  Having a Spouse who cares is "priceless".  My Spouse committed suicide 2 years ago because she didn't want to take care of anymore, even though I took care of her a lot especially after her hip replacement surgery (her first ever surgery).  She was the worst patient I have ever been around. <br />
Ivan

  Try these tips to avoid social isolation during cancer By Sheryl M. Ness, R.N. April 19, 2016 <br />
In past blogs, we've talked about the stigma associated with cancer. This week I'd like to focus on another aspect of living with cancer — social isolation. If you've been diagnosed with cancer, you may know exactly what I'm talking about. I hear about it almost daily. Cancer treatment can affect your ability to eat, talk, and have the energy to be social in a way that is vital to supporting who you are as a person. Side effects from surgery, chemotherapy and radiation may be intense over long periods of time.<br />
Some physical changes are obvious, such as hair loss and visible scars. At times you might be too fatigued or just uncomfortable to put yourself out there for a social outing. Anyone with cancer can feel a sense of social isolation. However, this can be more intense for some groups. Treatment for head and neck cancer patients for example, causes changes in the mouth and throat that can affect a person's ability to swallow, talk and control secretions.<br />
Those with leukemia may need to be isolated from others during chemotherapy prior to and during a bone marrow transplant. Those with chronic cancer or advanced cancer often face constant treatment without any sort of break from side effects.Researchers studying this topic with cancer survivors have found that social isolation can increase anxiety, stress, depression and emotional distress.<br />
If you're a caregiver, your time and energy may be so focused on taking care of your loved one that your social life may also be impacted. Think about all of the aspects of life that are social in nature, such as going to work, eating out, talking with friends, traveling, meeting for coffee ... the list goes on and on. <br />
Staying connected when you're living with cancer is important. Getting support and social contact might look different during this time. Here are a few ideas to keep your social connections during times when you find it physically or emotionally difficult.<br />
<br />
- Connect with friends virtually via tools such as Facebook, Skype, Instagram, blogs or Caring Bridge.<br />
- Instead of attending a large social gathering, reach out to one or two friends for support and connection.<br />
- If you're not ready to eat out with others, let them know you'd rather join them after dinner — try sipping on a cup of herbal tea and catch up this way.<br />
- Keep it simple — focus on social outings with people that bring you energy and a sense of happiness. It's OK to say no to other invitations that don't fit for you at this time.<br />
- Schedule outings when you usually have the most energy.<br />
<br />
Sheryl M. Ness, R.N.