Please allow me to vent an issue only a Sarcoma or cancer patient can relate to.
First off, if you're interested in my specific case, feel free to check out this link.
The mental toll Sarcoma plays on it's victims is one that can be compared with any war like scenario. PTSD is something that should possibly be recognized as a real disability issue post treatment. Because, as we we all know, you're never really "finished."
After my treatment, I felt compelled to write this to my equals who are probably the only ones that will understand how frustrating it is that the oncology community during the experience usually ignores something oh so important, your emotional state.
With the insane amount of money the medical community receives per patient, every clinic where we get treatment should have a staff psychologist assigned to meet with each patient. This should be standard procedure just as much as having to check a white cell count.
Instead, at least in my case, you are left to figure out your mental state on your own. Find a support group or a friend that can help. When you're in "la la" land and can't really think straight, going to the supermarket is hard enough! Your mental state should be the partially the responsibility of the medical community. Granted they are focused on the specific potions and surgeries, but there is no reason that mental health professionals are not directly assigned to each case from the onset.
In my case, when I was at UCLA medical center post surgery, someone should have alerted the psychology staff that a new Sarcoma patient had just come in, and that they should be seen ASAP. This never happened. I found the Wellness Community during treatment on my own as well as my mentor Kirk Souder. Without them and my mother, I don't think I would have made it through.
I will also tell you that post treatment, now six years no mets or re-occurrence, I think of myself as someone in a unique position to help others in a mentoring role. Unfortunately, having reached out to many Sarcoma non profits that we are all probably aware of, I have yet to help one single person.
Yes marathons to raise money are important. Raffles and such, but the mental... I wanted to help my com padres see that I'm still here and thriving. This was oh so important to me when I first started out. I remember getting my port installed thinking, "is this really happening?"
So I finish this post a bit frustrated knowing how many children I'd seen suffer every day during chemo that I could be helping throughout the years. I've talked and met with individuals high up in this space, and what I see is a general focus on fund raising, and a disconnect with the mental.
Best to all of you.