Sunday, March 8, 2009

What is SPOHNC?

Hi everyone!! Debbie here.


I've been trying to decide how to write this next blog. Many days I would watch my brother stare off into space as tho trying to find something that only he could see. When I'd ask him where he went..meaning what was he thinking about. He'd reply..."just bloggin in my head".

When John first was diagnosed with SCC (squamous cell carcinoma), the information coming at him...and the family...was OVERWELMING!! I've worked in the medical field for over 20 years. I love to learn so I feel comfortable when I say I know a little about alot. It was overwelming for even me.

Everyone seemed to have a voice to offer opinion..or advise. Sometimes quite helpful..sometimes it's like being pulled like taffy. A person wants to not only make a good decision..but one they can feel confortable with later. HOW can a person accomplish such a task with soo many variances.


John's experience with cancer was not the first in our family ...but it was the most likely the hardest to accept. Our family heritage with this little booger, as I like to call it, ranges from.....lung...prostate...breast...cervical.... and that's just what we do know.

There is no way I would ever want to disrepect any amount of turmoil this disease can bring. Cancer can..and often does take on life altering decisions that need to be made. Some more than others. John's was a biggy.

BUT somehow..a person pieces together enough information and with one baby step at a time..tomorrow finds its way once again into your lives.


Having look back and learning as we go..I think I may be able to help those new comers to this blog...and who knows..maybe even some faithful readers.

Just before John's surgery, I came across the support group called SPOHNC (pronouned spunk). Support for People with Oral, Head, Neck Cancer. It's not a formal support group. No head Dr. (shrink, pychologist however you wish to call). NoOne to ask the silly questions "how do you feel today?" Just real people..with same concerns as you have.

It's just some TRUE FELLOW PERSONS of all ages...both male and female, coming together to share the knowledge they've learned.

Sometimes you may pick up a side effect that you have overlooked. Maybe it's just getting creative ideas of what you are dealing with.... from what works for nausea..to creams for the chemo rash or how to prevent or help the post radiation dry mouth. These are ideas from those who you can learn from their experiences.

My brother never felt well enough to go. But I did. I'm soo glad. I'd take information and absorb it like a sponge. Sometimes ideas worked..sometimes not. But when you're dealing with SCC of the head and neck...sometimes..you try anything. (you may understand this later) They ARE truly the greatest helpers in your care. THEY know what you are dealing with. I would try to understand.... BUT even I knew..it's a different pair of shoes that my brother walked.

My brother case was a bit more severe than the others. He fell into that 1-10% chance that no treatment would help and surgery was needed. (read early blogs on his story). No, he didn't go to these SPOHNC meetings....but he still learned thru my visits.
At first he was skeptic..but after the second one...he asked how it went. I spoke about some of the others' experiences. He'd listen intently. Searching and picking up on whatever may be helpful. Sometimes..it may have been just knowing he's not alone with questions.


We lost John recently. It was NOT the cancer. He had struggled for many months. Fighting off one thing or another. Some completely unrelated to the cancer. But..his weakened body..changed from it's ninja mode (as I use to call him..being soo suprised how he fought off so much already) to what became something he was more comforted with... His own skin. He still didn't give up so much on the cancer fight. But when the time came to be comfortable with what his body had gone thru....he accepted once again his hand. This time..if you are religious as John was..he didn't really loose the game. Ultimately...He won.


I hope to continue John's blog. WHY? Because he truly wanted to help others understand SCC. Those getting newly diagnosed...to those needed prevention teaching.

The FIRST STEP FOR YOU is to learn how to become your own advocate. (read John's early blogs) Let his lessons help you. The SPOHNC group is another place to learn. The group is NATIONWIDE. To find your local chapter I suggest this: google spohnc with your state. Not all the chapters are connected to each other to find local chapters from site to site. But I found that each state usually does. PLEASE please try this group. I promise you won't regret going. They are the ones who truly understand. MORE than the Docs..nurses...or even a sis like me.

"for everything there is a season, a time for every purpose .." Ecclesiaste

John chose his own path..you may choose yours to be different...either way...it's yours for the taking..all you have to do is reach to grab it. There are those there to reach back when you are ready.

Many thanks to all for reading.

debbie

2 comments:

Wendy S. Harpham, MD said...

Dear Debbie,
John's courage will help me find courage when I need it. And I agree: John did not "lose" his battle. The link below takes you to an article that explains this further. With hope, Wendy

http://www.oncology-times.com/pt/re/oncotimes/pdfhandler.00130989-200707250-00013.pdf;jsessionid=J1bTB1W3rfcLhkSCfGtThvQHVyllP1sB53QDZrDXX7xpjPfvJGvN!-1690570675!181195629!8091!-1

Anonymous said...

Many Many thanks to all those who have sent personal condolences. Thank you for all your support.

Please bear with me as I find a way to continue this site with the same momentum as John..but take it to a different level of knowledge to reach more people that can benefit.
debbie