13 Apr One Melanoma Patient’s Need for Community
I find it comforting to meet or speak with others surviving the melanoma maze. Visiting my cancer centre on a regular basis for all of my appointments and treatments, I sit quietly with my peers awaiting theirs, but I almost eagerly strike up conversation if someone even glances my way. I must startle some of these unknown strangers, likely appearing like some overzealous puppy jumping up to make friends, panting all over the place. I have plenty of wonderful friends already, but I seem to crave new friends. I want cancer friends, I need common ground.
Since my diagnosis and countless consultations with medical professionals of all types, I still find the greatest comfort speaking with others in the same boat as I am. We compare facilities and oncologists, pain levels, side effects, and remedies for improvement of our symptoms.
We are all there for the same reason, and we seem keen to exchange stories and curious questions about clinical trials and treatment options and number of surgeries under our belts. It is a strange language, one I have learned a lot about in the past year, but one that I believe I will never fully understand.
I have happened to have met three people with melanoma, but that’s it. It is not the most common ailment along my traveled path. All cancer cases are personal of course, but I quickly learned that melanoma is even more a mysterious beast.
Melanoma patients are a unique breed, fighting a unique battle, and we need comrades on our side. Talking it out with someone with the same type of metastatic cells not only eases our psychological burden, but it lends hope to the fight. It reinforces in our minds and bodies that we may have other options to explore or other questions to ask our oncologists. There are other people ALIVE coping with what we are coping with, and they may be able to help.
Life raft thrown out! Even if for just one day, that is one day’s worth of hope that I may not have had if I hadn’t spoken with my comrade.
Online resources are a huge help also – when first diagnosed I was banned by my doctor from the internet, but now that I have learned more and I am more comfortable with the way things seem to work, I feel less panic about reading things online about my disease. Even the venting of fellow bloggers is comforting, I feel relief when reading their words and knowing that I am not the only one who is afraid or discouraged or angry.
I can sift through the medical terms and look past the statistics, and every now and then I find a nugget of information that sends me in an entirely different direction, usually uncovering another piece of my puzzle. Whether about melanoma or the likes of a new meditation technique, it gives me the feeling that there is something I can do about my situation, and that there are others who are doing the same.
I remember feeling when I was first diagnosed that I was walking around with a giant digital clock above my head, with large green numbers counting down to my expiry date. I felt I stuck out like a sore thumb, wore that clock around like a black cloud, wondering how to get it away from me. I ducked and dodged and denied until I was blue in the face, now I focus my energy on positive action, namely, writing or talking with anyone willing to show their community flag.
The clock seems to have faded this year later, but it is not gone. That is in part due to those that I have connected with, in person or online, that have said the same things I have felt, or that have experienced the situation I am in. Venting, learning, sharing: all coping mechanisms.
I trust my oncologists, but I gain extra strength when I speak to people who have walked the same steps I am being directed to take. I hear it repeated and think it is a good sign that I am not some entirely solitary being receiving a mystical treatment unknown to anyone outside of the chemical laboratory that mixes up my IV bag of potion.
Every day I push on, hanging out with my family and friends, going to my appointments, resting with my cat, and seeking the additional community that I need in order to properly fulfill my ambition to fight melanoma. I have to fight my individual battle my way, but I am also content to share that fight with others, either gaining from their perspective, or being able to help someone else in some small way. We are all neighbours on this ship, and I think we can paddle together to keep it afloat.
Natalie Richardson – www.impatientpatientmomma.blogspot.ca