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Still in treatment

ET@cowboy
Posts: 15
Joined: May 2013

Just joined the board yesterday. Guess I posted yesterday in the wrong place who knows. I was diagnosed with Squamos cell carcinoma HPV-16 Tonsil and neck, on Feb 8, 2013. I've had three surgeries and have five radiation treatments left. Couldn't do Chemo because of a solitary kidney. They took 25 nodes and 1 salivary gland. I am still eating solid food and able to exercise lightly for 45 mins.  Considering  that I don't have a right to complain. The pain is unreal though. cancer really does suck.  For those who have been dealing with this for a while, how long do the feelings of dread go on. I wake up in the middle of the night wondering what is wrong. Then I remember I am dealing with cancer.  Also, when do the emotional highs and lows start to fade ? Does radiation affect your eyes? I still remain positive but this really does suck.

HobbsDoggy
Posts: 165
Joined: Feb 2013

Cannot say for everyone and I wish I could tell you that the dread and up and down emotions go away quickly. For me they did and do not. They get better and there are times I don't think about the cancer at all. I am 5 months out of treatment, very similar to yours, except that I had chemo. Day to day life does start again and all those things that just living brings start to push cancer thinking away. None the less the idea that I had cancer, that I still have significant side effects, although much less than before and slowly going away, still play a major role in my life.

Finding the balance between talking about it, on here, at a cancer group in my town and with my wife and friends, is hard. I need to get it out there and I do that mostly at my cancer group as I don't want to always be talking about it and it gets others like my wife down. Slowly this is all getting better also. I do take something for depression, fairly common with cancer I understand and that helps.

Bottom line for me is dread and up and down emotions are going to be part of my life forever, now there are more up emotions that before, it is less of my life than before and I see that life is very much worth living and worth the treatment and the side effects. I suggest you keep letting us know how you are doing, it helps.

 

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

I was STGIII SCC Tonsils, lymphnodes and also HPV+..., many here are.

I had no neck dissection, tonsils came out, then a combination of sixteen weeks, four chemo types and the 35 daily rads... That was all back in early 2009... All clean and clear since.

You'll get through it, and more than likely with good results... Since Erbitux is actually not a chemo, there wasn't an option for that..., just curious.

You sound to be doing well, despite having the majority of rads sessions behind you (assuming 30 - 35).

It's hard to make much forward progrress thoughts and feelings while you are still being treated. I found that once I was on my own so to say, I felt more confident each day... But a lot deal with similar issues, what if's and anxiety... It's a work in progress for many.

Staying positive, maintaing your sense of humor, taking in many calories and a lot of hydration is huge for recovery..., sounds like you are doing very well.

Best,

John

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

Welcome, but so sorry you have to be here.  I'm convinced that radiation does affect your eyes (as does chemo and the anti-nausea meds) but most of the effects will be temporary.  I do have what my ophalmologist calls "radiation-induced cataracts" forming. Those can be addressed later, if they get bad enough.  Just keep moving forward, one day at a time (see the cliche' post).

Deb

D Lewis's picture
D Lewis
Posts: 1521
Joined: Jan 2010

A number of us end up with PTSD when all is said and done.  That can be treated, too, a little further down the line.

Deb

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

For me, there was such a whirlwind of activity from dx to tx and then I felt so bad physically through tx, that I didn't have much time to deal with the mental aspect of cancer. It was after the first post tx scan and the words "no evidence of disease" that it hit me. Today, 1 year post tx, I do worry about reoccurance and side effects. I try my best not to dwell on what may never be. When I feel anger creeping in, I tell myself that cancer has taken enough of my days and I'm not going to give in to it. Tx has come such a long way that I try to be as optomistic as I can. There are lots of outdated stats out there. 

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

for me to accept my name and the word cancer in the same sentence....they simply didn't fit together.  I'm right about 9 months out of treatment, and get the whips and jingles about the big C less times per week than a few months ago....tho it is necessary to peel me off the wall right before a scan Smile

Somebody mentioned, and I will second the motion....there is no time line on the emotional ups and downs of learning to accept a new and huge concept in your life....but trying to get your head wrapped around it now while still in treatment is pretty tough.  Let yourself grow into the idea....time is always our friend.

p

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

 

Cowboy,

 

Welcome to the H&N forum, where you can post anywhere you like.  It is just easier to find you when you start a new thread (as you did).

 

It sounds like you are doing pretty well.  Once the treatments end and you are on the mend I would expect your pain and dread start to fade away. There is no going back, no do overs, like the rest of us you got clipped by cancer and it is a b _ _ _ h. Don’t beat yourself up or let it drag you down, you have to fight to the end (and you are almost there).

 

It will get better soon and slowly,

 

Matt

 

ET@cowboy
Posts: 15
Joined: May 2013

I really wish I had know about this forum early on. Thanks for the support. All I can say is this disease is crazy. I never realized how much was out there. Is there a way to get the word out about this site other than word of mouth or accidently finding it? This info should be at every cancer center. It has helped in just a day. Thanks to all.

Eric

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

Hi Eric,

Welcome to the site. Glad you found us. 

This site and the support is unparalleled. I'm a relative newbie (joined in Jan.). The folks here got me through boot camp ;) I'm now three weeks out of treatment and on the road to recovery.

You pose an interesting question. I found this forum while surfing the web. Even on the ACS main site there aren't a lot of signs pointing the way here. You would think there would be. I used the services of the ACS and stayed at Hope Lodge in Baltimore while undergoing treatment at Johns Hopkins. I wouldn't have been able to afford it had that not been available. The management there was not aware of the forums and there was nothing posted in their literature that mentioned the CSN forums. Even while I was there, I referred many other lodge guests here. I don't know if they took advantage or not. I also don't know how active the other forums are. The Head and Neck forum is a pretty active page. 

Best wishes as you move along on your journey.

Positive thoughts and prayers

"T"

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

This site which is under ACS, is separate in a lot of ways... Not sure now as it recently went through some upgrades both hardware and software.

At one time it was totally segrated from the main ACS site, and for a reason... to instill anonymity, and I think to ease a sense of business orientation..., I could be wrong.

I know there is one person that has basically overseen this site for many years.., not just this forum, the entire CSN site.

I have met her Greta, and actually things that you mention were discussed..., hopefully the site will remain for many years to come.

I know that ACS has a similar concept, with a slightly different approach. That site is What Next and is on the ACS site.

You are right, it's a little hard to find CSN on that main site....

 Support

It's actually kind of ironic, that WhatNext is called a Cancer Support Network...CSN

There are a few other forums on CSN that are pretty active also, Breast Cancer being one..

Best, John

cureitall66's picture
cureitall66
Posts: 842
Joined: Aug 2012

Welcome to the CSN H&N Family! Sorry you've had to deal with this like the rest of us. I am a caregiver to 52 yr Male, BOT (base of tongue), 2 lymph nodes involved (same side), HPV16+, Stage IV . He was diagnosed Aug 2012. Tx consisted of Chemo (Carboplatin & Paclitaxel) and Rads for 7 wks. Finished Tx early Dec. His PET scan showed NED in Feb. Like you and the many others here, it's been a long haul for him. He has been out of tx now almost 6 months and recovery has been slow, but much better today. The physical changes can be a little bit of a challenge from time to time, but most comes back. The mental is much, much better today!! He was an emotional wreck during and after tx for at least 2-3 months after. Today, he is like a different man. He is learning to adapt to this new normal. He is back to work and keeps himself busy. When something happens like his son graduated from college, he was very, very emotional. I think he is more sensitive to life events now. He is cherishing everything right now. Very positive for the most part and I think it is due to the people around him. When he wants to talk deep about things, we do....when he's quiet, for the most part I let him go...he has to work through this without me as I am not always there. But, once I caught him sitting in his chair staring into space for awhile and I kind of snapped my fingers and asked him what he was thinking about....he smile and said, "nothing". I guess I'm trying to remind him that cancer isn't going to take up that space in his mind while I'm around! 

I think everyone is different in how they deal with things. Staying around positive people and having support is very important. Don't keep it inside. If you need to talk about it, do so. I figure that we can either try to rise above this, or let it bring us down....I choose to help him rise above it. I don't want it to feel like a black cloud over him. I know there are going to be tough days ahead, but once we get to our annual marks without issues, it will get better...as our confidence gets strengthened.

You are not alone with this and your feelings are very typical for anyone dealing with cancer. Just know that there are plenty of people that have shared the same kinds of feelings of fear as you and somehow they get through it. I would search for someone that you can relate to that has had cancer so that you can share those feelings.....and there are always the folks here on the forum...we may not be physically there with you, but we still share those feelings of fear. Hang in there...it does get better. Time is of the essence.

God Bless,

~C 

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Sorry you have to join us, but welcome all the same.

Eyes, I have had no personal issues with that, so I can't say. Maybe others will come along and have had an experience.

You say you can't have chemo due to one kidney, I wonder is you are a candiate fro Erbitux?  I am not a doctor but I was thinking Erbitux is NOT a platinum based chemo and may not affect your kidneys, maybe you can ask about that.

Emotional highs and lows: Gee, where to begin on that one. I am now 16 months out from my last radiation, stage III, base of tongue, one lymph node HPV+ and NED by the way :).  I can say for me it is now easier than in the begining (as for the highs and lows).  If I had to give a reason I would think it is because after each scan (as Phrannie said not withstanding the few days before each scan I too am quite puckered at both ends) that was NED I grow more at ease. But at the same time I am looking to get those coveted years between me and my last treatment as "time" tends to say we are "cured" per the textbooks.  I also remember up until my very first post treatment scan it was a daily battle not with just the emotions but the pain as well. I hope you are staying ahead of the pain and taking whatever you need for it.  All your energy and strenght needs to be on getting well, healing and I don't have to tell you pain just drains the strength right out of you.

I will also say that as time goes by I have (and I imagine most are the same) gotten less worried / uptight about aches and pains.  I had a pretty good scare this past October when a scan showed some suspicious things in my left lung....but it turned out to be just an infection.

Again, wish we all could give a concrete answer on the emotional highs and lows, but at leas you know you have a group that has been there done that with you on this site, and who wouldn't have those ups and downs!  All of us want as much time on this beautiful earth with the ones we love so it's natural to have those highs and lows.  The good thing is you are almost done with tx's and by golly that much closer to meeting Mr. NED (no evidence of disease)

Oh, on the pain front...at my worst point in the pain arena I was taking 6-7 Narco a day and I wore two Fentynal patches, a 25 mcg and a 12 mcg. I was a very big guy when I started tx (320 lbs) so I think I took more bc it took more to alleviate the pain, but I may be wrong.

Whispered a prayer for you Cowboy that you get that cancer free scan and that the pain and emotions front ease up a bit ...

Keep us posted.

 

Tim

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