Share this:
ikampel2
@ikampel2

Posts: 6
Joined: Apr 23, 2016

I have Myelodysplastic Syndrome (MDS) spawned from ITP

Posted by @ikampel2, Apr 23, 2016

I Have Myelodysplastic Syndrome (MDS) that spawned from Idiopathic Thrombocytopenic Purpura (ITP) which spawned from original diagnosis of Chronic Lymphocytic Leukemia (CLL).

Now I don’t know if this the correct group, however I am alone and don’t have any support system including family that could care less.

REPLY

I care I will pray for u

Liked by Ali Skahan

Hi @ikampel2, welcome to Connect. I moved your post to the Cancer group so that I could connect you with @wboy1234 @amywilcox and @KathleenWarren, who have all recently reached out about MDS.

Please know that you are not alone, we are here for you to talk to.

@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?

@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?

Jump to this post

Sorry about the late post, but now have Basal Cell Carcinoma on my hand that needs to be cut out completely.
I never go out in the sun without being covered up, but this could have been started along time ago, according to the Dermatologist.
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.
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.
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.
Ivan

Wow, it doesn’t seem to end. It is frustrating when people tell their stories about the person they know who knows a person who had cancer, etc., etc. It would just be nice to be listened to, right?

I’m tagging other Connect members @mlemieux @maisyann @hopeful33250 @sue_in_delaware @martid. While they don’t share your exact diagnosis Ivan, I bet they can relate to your situation when family doesn’t get it and isn’t supportive. I’m also tagging @caretothepeople who always seems to have relevant and helpful resources to share and thoughts to add.

I sure hope the B-12 loss is an anomaly.

Thanks @colleenyoung! Melody here.

@ikampel2, living with a chronic illness can be a roller coaster and as other have suggested, taking care of yourself is so important. This includes tending to your emotional and mental well being too. You’ve already been connected with some great folks here in Connect.

The MDS Foundation offer information and a number of resources including global support group and online forums: mds-foundation.org

You mentioned the MDS spawned from ITP, so I wanted to pass along the link to the Platelet Disorder Support Association as well, as it may be another place to turn: https://www.pdsa.org/

@colleenyoung

Wow, it doesn’t seem to end. It is frustrating when people tell their stories about the person they know who knows a person who had cancer, etc., etc. It would just be nice to be listened to, right?

I’m tagging other Connect members @mlemieux @maisyann @hopeful33250 @sue_in_delaware @martid. While they don’t share your exact diagnosis Ivan, I bet they can relate to your situation when family doesn’t get it and isn’t supportive. I’m also tagging @caretothepeople who always seems to have relevant and helpful resources to share and thoughts to add.

I sure hope the B-12 loss is an anomaly.

Jump to this post

Right !!!!!!!!!!!!1

@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?

Jump to this post

From The Publication “8th Annual Cancer Guide” 
Article Title – Dealing with Emotions
(You really should read the entire article – it’s short)
Page 20 – bottom right side
The Negative of Positive Thinking
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.
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.
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.
**********************************************************************
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. 
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.
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. 
Ivan

@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?

Jump to this post

  Try these tips to avoid social isolation during cancer By Sheryl M. Ness, R.N. April 19, 2016
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.
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.
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.
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.
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.

– Connect with friends virtually via tools such as Facebook, Skype, Instagram, blogs or Caring Bridge.
– Instead of attending a large social gathering, reach out to one or two friends for support and connection.
– 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.
– 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.
– Schedule outings when you usually have the most energy.

Sheryl M. Ness, R.N.

Liked by martid

ikampel2 So sorry that you are having a tough go of it. I am not familiar with your specific medical concerns but I am on my 2nd primary cancer diagnosis – went from Stage 1C 3 year survivor (from diagnosis) to Stage 4 CRC with liver mets. Sounds like you have gotten some good suggestions so far. It is hard to get out and meet new people with all of the medical issues going on, and, as suggested, so often people just do not get it.

I was very fortunate when I had Breast Cancer to find a great online support group. I ended up being asked to become an Admin because it grew so rapidly. When I began to turn the corner, I needed to move away from dealing with it so much and I resigned. With this 2nd diagnosis (very fortunate that I was still under care with check ups every 3 months because of the aggressiveness of my cancer) I again looked to Facebook for a group to help me learn a bit more. I knew nothing about colorectal cancer and less about metastasis to the liver. Admittedly, you may have to go through a couple of groups before finding the right one, but I have found that, in the cancer community at least, there are some very positive and knowledgeable people in some of these groups. You develop true relationships with some of them – certainly not all but some. That might be an outlet you could explore if you are on Facebook. If you are not, it is easy to join and then you simply search for groups based on your diagnosis or interest. If you are like many of “us” late night hours are often times when you are up. There is often someone in your group that is also awake and looking for some conversation.

That is certainly not to say that this discussion group is not also a good place. There is a wealth of knowledge here and the Connect Directors are outstanding. I will watch for your posts. Having just started chemo again, I am up and down; doing pretty good, but not on line much right now. I am on a 2 week chemo schedule with a 48 hour constant drip pump in addition. It will take some figuring out to see how to best manage it – but I will check on your posts when I spot them. Best of luck, and hang in there. You have had a lot to deal with.

Please login or register to post a reply.