Finally Back Home

I have spent most of the past two weeks travelling. First it was a needed break with my husband. Then it was a road trip to meet some people who were very important to me but I had never met. I am also now getting over a cold. My husband shared his cold with me last week and I have had it since. To be fair he has been sick for a week as well.

While it may not have been the best idea to over do things for several days in the row, emotionally I needed it.

Anyway, now I am back home and relaxing instead of getting up to go somewhere. I am way behind on rest and sleep. My fatigue level is too high. Basically I need to nap for the next few days to catch up.

However do I regret all my travelling? Certainly not. It was a welcome break from reality. Everyone needs to break up their regular life and do something different. Especially people who are not healthy and feel stuck in a rut because of their health limitations.

Now I do feel refreshed and ready to get back to my regular life (and finally put away my suitcase). And get back to doctor appointments.

I am ready to catch up on so many things - my blog, my doctor appointments, and more.

Social Media Helps Breast Cancer Patients

Here's a surprise for us! Social media helps breast cancer patients.... And it took a research study to tell them that. How many of us went online for support after breast cancer to the online groups at Komen, Breastcancer.org, or many other sites in the last decade? I know I did. I also started blogging and looking for offline support services.

We've know about this for a while now. But it took a bunch of scientists a while to figure this out.

"Women who communicated online the most felt the most positive about their choices about treatment. They also said their decisions were more deliberate, and they were more satisfied with them, according to the study."

And can I add the decisions we made by asking our peers who had been through the same thing were a lot more educated than those of us who went along with what our doctors told us to do because we could hear it from our peers.

"But the findings don't prove that using social media outlets like Facebook and Twitter will benefit all breast cancer patients, and the researchers expressed a note of caution."

However the scientists still have doubts because they need more research. Me, I can tell you that I was happy when I learned to ask questions of my peers. 

""For some women, social media may be a helpful resource. But there are still questions to answer before we can rely on it as a routine part of patient care,...""

Okay the internet has changed many things including the practice of medicine and the behavior of patients. Why should this be a surprise? We go online to post pictures of our cats and to ask questions about the decisions facing us as part of our cancer treatments.

The Post Cancer Diagnosis Life

As I have said before, if you haven't walked the walk, you can't talk the talk. This is a pet peeve of mine.

Once you are diagnosed with cancer and thus had your life turned upside down and inside out at the same time, it takes time to return to a balance, that so called 'new normal' you hear about (but never really attain or understand). You may be the same but you aren't. You have new insights into life after going through those experiences. You have 'walked the walk' and are now a member of a new group - cancer people.

Cancer people are the ones who have been the perils of diagnosis, chemotherapy, radiation, hope and despair. Its a group of people who never thought they would be in it but are doing okay now that they are there. They are happy they are still alive to participate. They have more emotional ups and downs than anyone else. No one else can understand what life is like for them.

There is another group of well meaning people out there who try to help cancer people but since they haven't 'walked the walk', they can't 'talk the talk' no matter how much they try. These include care givers, providers, and more. Unless an oncologist or oncological nurse has had cancer, they never quite get it. Unless a therapist has had cancer, they never quite get it. Never mind insurance companies who never get anything and just like the word 'no'. (But that's a different blog post.) Or drug development people who really do n't get it.

We cancer people accept their help but realize there may be holes in what they can provide. They do their best but it will never quite be all encompassing. However it is rare that a cancer person's life was not derailed enough so they want and are still able to provide support and care that would fill all the gaps.

As a cancer person, do you really want to open up to your career path and reveal your medical history and face the societal backlash (where people think you are too 'sick' to be a full employee) in order to fully fill the role of a cancer support person? (Again another blog post.)

When cancer people meet, the conversation tone subtly changes. Because we have 'walked the walk' and are now together.

Resentment

Among all the other emotions for a cancer patient is resentment. First there is the resentment of why me? But the biggest problem is the resentment of others.

Why did X turn their back on me when I was diagnosed with cancer after all our years of friendship? This one is very common. I have lost more friends at the word cancer than I care to count. I hope they think they are better off without me and I certainly know I am better off without them. But it took a long time to get that way. There are numerous iterations of this passed around among cancer patients. We all have this happen to us.

But the bigger resentment comes when key family members, who we have relied on our whole lives for support, hide information about our diagnoses from us. Yes this happens.

I met a woman about five years ago. She was diagnosed with thyroid cancer when she was 18. Her parents never told her that she was diagnosed with cancer. As a result she never had any follow up treatment after cancer and experienced numerous recurrences and their treatments for decades. Her parents were scared of the word cancer and didn't want to admit it had happened to their family.

I know another woman who was diagnosed at age 20 with cancer. Her mother never told her. Her sister never told her. Her best friend never told her. Can you believe it? And her mother since passed away before she had a chance to come to grips with this. Her friends and family did not feel she was emotionally able to cope with her diagnosis.

I know someone else who's family were with her through her cancer diagnosis but never discussed it. For decades. It was sort of put to the side and was and is the elephant in the room that is never spoken of. How does that sound? How do you face your family when they do not choose to discuss your health for decades?

This kind of resentment festers and lingers. Its a huge emotional load for a cancer patient to deal with along side of life long health issues, side effects, and emotional drain.

Support Group Please!

I have been a long time fan of support groups, well only since my second cancer diagnosis. Before that, I thought they were for 'old people'. Now I do not consider myself old, but I have learned the benefits of discussing issues with your peers who understand how you feel.

I used to belong to a breast cancer support group which I attended for several years. It still meets monthly in the evenings but I don't do evening anything anymore.

I also used to attend a new patient breast cancer support group when I was first diagnosed and I still call the members friends and we still get together when we can and are in touch regularly.

Recently I have been trying a fibromyalgia support group. So far, my jury is still out. Yesterday was a decent meeting as the attendees actually participated. But one of the people who participated was trying it out and I am not sure she will return.

I have heard of a chronic illness support group that I might try. It really depends on what kinds of chronic illnesses are there and what the participants are like.

There is a post treatment breast cancer support group I might try in January. But it is my understanding that most of the attendees are much closer to the end of their treatment so I am not sure how that would work.

And there is a chronic pain support group which meets monthly that I attended once three years ago. I plan to attend again on this Friday. I'll have to see how that goes too.

Support groups are like dating - what a horrible analog but its true. You have to kiss a lot of frogs before you find the prince. I feel as part of taking better care of me, I would like to find a group of people where we can talk about issues with dealing with multiple medical issues. There are many people like me with medical issues but finding ones to talk to can be harder. I was offered the opportunity to start a knitting group at a cancer support center. That may be a solution.

I'll keep trying. But I need to get through moving first.

The blind leading the sighted

I get so disappointed when I find cancer support activities lead by those who have never been diagnosed with cancer. Its a huge disappointment.

I went to visit another cancer support place/center/whatever you want to call it last week. While it was a nice place and offered a nice range of activities and support services, no one I met has ever had cancer. Some had an oncology backgrounds or extensive training, but that is not the same thing.

They have not 'walked the walk'. I don't know how they can talk the talk if they haven't walked the walk.

This is a huge frustration for me personally. I feel its right up there with someone who can't draw teaching an art class. Or the blind trying to lead the sighted.

In the process of making the appointment and meeting with their intake person I was offered a massage, tai chi, yoga class, acupuncture, acupressure, and something else I can't remember that would not help me at all. And why couldn't I just refuse instead of having to explain my medical issues?

In my perfect dream world, I would design a cancer support center where every single person in a leadership position, board members and senior staff, would be people who had been through a cancer diagnosis personally.

How can people who haven't dealt with the illness come up with appropriate activities and interactions if they haven't dealt with it themselves?