Today I took part in my first Twitter chat, which was super exciting!  Even more exciting was the fact that this twitter chat was about coping with the psychosocial challenges of cancer treatment.  Called #CopingCancer, it was led by the National Cancer Institute (NCI) and National Institute of Mental Health (NIMH).

As I am relatively new to Twitter, I had never heard of a Twitter chat before and I certainly had no idea how it would work.  But, when I logged into my Twitter account at 1pm for the beginning of the chat, I was blown away.

What a way to bring people together to talk about important issues!  While Twitter does pose a bit of a challenge due to its character limit, I was amazed at how many people and organizations responded in useful ways to the questions posed by the NCI and NIMH.  I was also pleasantly surprised by the amount of focus given to adolescent and young adult cancer coping issues.  

If you are a teen or young adult going through cancer treatment or just starting life as a survivor, you should get on Twitter.  I highly recommend following the NCI @theNCI, the AYA cancer organization Critical Mass @heycriticalmass, and the American Psychosocial Oncology Society @APOSHQ.  They often post useful cancer care and coping information/resources.

That being said, there was also one MAJOR issue I noticed through participating in the #CancerCoping Twitter chat.  All the experts and hospitals participating seemed to recognize that the psychosocial challenges cancer patients (of any age) face during treatment warrant quality care.  This was especially the case when the psychosocial needs of adolescents and young adults were brought up.  However, when the final question of the chat asked what patients can do to get help or find resources, I did not see many responses relevant to AYA psychosocial health.  While many organizations offer support resources - booklets, videos, information, etc. - I did not see any hospitals mention care programs designed to serve the psychosocial needs of AYA patients going through cancer treatment.  

For example, here is one comment by the NIMH that I responded to:

The NIMH basically said psychosocial care should be provided before and after a diagnosis, as well as after treatment ends.  I think they are 100% correct, but I know I personally did not receive such care, and I know from talking to AYA patients at other hospitals that many others have not received such care either.  

So, where is the disconnect?  If the NIMH makes such a comment, why have major hospitals still not instituted clear psychosocial care programs for AYA patients?  

In my own case, I wonder if the hospital "thought" they were providing me such care by providing a social worker to help my family and I. The problem with that, however, was that the social worker was rarely around on the days I came to clinic/the hospital and I was never sat down for a one-on-one psychosocial interview.  Fortunately I did not have any serious mental health issues to contend with during my treatment.  But, what if I had become depressed because I did not know how to cope with my relapse diagnosis?  As it was I had trouble figuring out (on my own) what coping even involved and how I could do it through the various stages and challenges of cancer treatment and survivorship.  It definitely would have been nice to have a professional there to guide me through that.

That being said, my lesson learned from today's Twitter chat is:
The #CopingCancer world is definitely making important steps towards recognizing and supporting the psychosocial needs of cancer patients.  However, there are still steps to be taken to ensure that all patients, and AYA patients in particular, are provided proper psychosocial care from beginning of treatment through survivorship.  

While I have found it incredibly wonderful to write this blog and share my favorite resources through Twitter, patients and survivors should not have to go fishing through Twitter feeds or scrolling through blogs like this one, to find answers or support.  

One day I hope to be a clinical psychologist and work to develop or enhance psychosocial care for AYA cancer patients and survivors.  I will cross my fingers that such programs will be much more common by that time :)

This was a sentence from what I would say is my favorite cancer-emotion article I have read thus far.  Ovarian cancer patient and English professor Susan Gubar writes in a beautifully artistic way about the emotional struggle - the "blessings and curses" - that cancer patients go through on a daily basis.  

The best part about her article is that she involves a series of paintings (ones I had never heard of before) that were painted by Hollis Sigler, a breast cancer patient, in the mid 1990's.  The paintings are brilliant.  They are made even more interesting by Gruber's explanations and analyses.  

Above all, however, I sincerely admire her incredibly creative way of looking for explanations and a shred of positivity in the midst of the curses of cancer.  

So, if you are looking for something to help you make sense of what you are feeling, or just something to tell you the craziness of your emotions is not crazy at all, I recommend this article.  If nothing else, it is a very good read.

I am a huge fan of TED talks and recently came across a really good one that I wanted to share.  While it focuses on the role of positive psychology in helping people achieve more in education and business, I think its message is also very applicable to teens and young adults going through cancer treatment, or living life as survivors.  

What stood out to me was the presenter's statement: "If you change your lens, you can change your happiness." Basically, by changing the way in which you see and perceive the things going on around you, you have the opportunity to be happier.  I am a huge proponent of this perspective because I think it can be very useful for cancer patients.  If you can focus on the things that are good - fun talks with nurses, ice cream in the middle of the night in the hospital, a record 12 hours of watching Friends on DVD, or the accomplishment of a simple art project at home - you may be able to protect yourself from the sadness, loneliness, pain, fear, etc. that are all daily emotions and experiences.  

More importantly, if you can learn to go through cancer treatment with a positive outlook, you will know how to go through life afterward in the same way.  As the video says, positive-thinkers tend to be more successful in education and business.  So, try to use your cancer treatment as a positive-thinking training period, and help set yourself up for a successful life after treatment!

According to US News and World Report, a new study has shown that poor physical or mental health as a teenager can lead to increased challenges in completing education and finding employment.  I took one look at the headline of the article and "CANCER" just went flying through my mind.  It's quite an obvious chain of events when thinking about it from the cancer perspective, and therefore an incredibly important issue to consider, especially when recently diagnosed with cancer as a teen.  I encourage you to check out the article and read about the study HERE.  Note the key phrases and words "miss more school", "socially excluded", "stigmatization", "negative impact", etc.  To clarify the reason this issue is so important in the long run, I've made a little diagram because visuals are always good :)

With all of that in mind, it is incredibly important to consider your education and work situation as soon as possible after your diagnosis.  Contacting your teachers or professors, communicating with your boss/coworkers, and understanding your impending physical limitations are all critical.  When I was diagnosed, my doctor made it clear my treatment would completely destroy my immune system, so attending school would literally put my life in danger because of how it would expose me to potential infections.  However, everyone's treatments are different, so it is important to talk to your doctor about how your treatment will affect you physically so that you can prepare.  For example, when I found out how my treatment would affect my immune system, my parents and I decided it would be best for me not to attend my 8th grade year.  So, we got in contact with my school's principal and all my teachers to let them know.  Additionally, I spoke with my medical team about options for keeping up with school, and learned about the Home/Hospital teaching program available in the county in which I live.  

While I was fortunate to have that option, such programs are not always available.  So, if you find yourself without access to such a program, I recommend reaching out to local cancer support organizations, particularly ones for teens/young adults.  It is possible they may have volunteers that are retired teachers, or simply volunteers with education credentials, that may be able to help you with keeping up with classes.  Extra communication with teachers at your school is also important in such a case too because they can help to adjust your work or develop an altered education plan for you.

I think education is essential when going through cancer treatment because it provides an outlet for you to channel your mental energy (since you probably won't have much physical energy) and, most importantly, it is the greatest tool you have to set goals and a direction for your life after treatment.