I came away with overwhelming feelings about this disease and those that have been afflicted by it. I don't want to sound like a martyr, but damn it, this disease is horrible....
We started by introducing ourselves, devulging the body part affected and giving the date of diagnosis and where we are today. After hearing over 20 people tell their stories....I couldn't help but notice how each one could still reflect on the details...the moment they were told, the numerous misdiagnosis, the runaround, the frustration of living with all the side effects, the anxiety that now resides in our psyche and the tears that still were shared after years of the diagnosis.
What those don't know who have never had cancer, is that, the patient has long term scars..we might be up and around and you might think because we are out of chemo, we are all done..but everyday there is a reminder, whether there is nueropathy(the numbness in our feet, hands, calves,arms), lymphodema(the swelling of legs or hands or arms),the permanent altering of our physical capabilities( can't run, can't ski, can't dance(!)), feeling anxious when there is a new test to be taken, it never goes away.It is exhausting.It sucks, it is all because of cancer and how they treat it.
I don't want to tell people how I really feel, that's negative, but it's reality that all those changes happen. Counselors don't even get it.Unless they've had cancer, but often they don't.We cancer survivors compare it to PTSD, it is trauma, every step, appointment, and change in our body is trauma. We lose parts, we lose what was. It is a loss, and it creeps up on us daily.
When will Doctors get it? When will they embrace the psychological impact of this journey? And stay in touch in aftercare, not just coming in for the quarterly bloodtest, but really providing comfort in all the fear we carry around with this?I can only hope the new Doctors and Nurses that go into this field will put themselves in our shoes. Having lunch with the participants, and sharing their stories deeper, floored me, in how many of us, were left to figure out aftercare after the chemo drip or radiation treatments have stopped..
I hate what cancer has done to me. So when you see a cancer survivor (mind you,they have just survived their treatment regimine) know that they are carrying dozens of side effects you don't even see, it's not all over, it never is, I think because of that, I CAN complain about cancer!
