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Dasri
Posts: 5
Joined: Feb 2010

Being new to this site, I have had treatment for squamous cancer. I opted out of the surgery thing as the details were frightening! It (surgery) would have been a complete overhaul on my face and neck. Plus the fact that it would not guarantee a prolonged living. It would only maybe give me a year if not longer. I opted for the radiation/chemo treatment that seemed to offer a longer period of living time. My original prognosis was 1-1 1/2 yrs with the surgery and the same time was projected should I do nothing. I started at a stage 4 on the affected lymph node and a stage 3 on the other areas affected. After doing 2 types of chemo and 35 days of radiation, I am now at a zero stage for now. I guess that means I am in remission. I have had no major problems during the treatments except for getting phemounia and having some swallowing issues that were later treated with minor pain killers and stuff. I did lose some weight but not too much(about 40 pds.). I ended all the treatments in April and see my docs (all of them) every 2-3 months for checkups. They still think I am some type of "miracle" as I didn't have any major issues like some of you have posted on this site. There are some after effects I have like the thyroid getting "frozen" and the chemo-brain "fog" and being cold alot. I live close to a major and great clinic (Mayo Clinic in MN) where cancer treatment is a specialty.
I find that I am having issues just deciding and wondering alot of what to expect now. I'm getting panic attacks just because of tightened muscles and worring about how long I have at life. My support system is great but I feel that being the only person I know going through this stuff, that people don't understand me and they just don't know what I am going through. I feel like all my friends and family are treating me with "kids gloves" due to my cancer. It's really difficult to explain this feeling to anyone. I often wonder why and where do I go from here? Does anyone else have this issue and how do you deal with it?

MarineE5
Posts: 762
Joined: Dec 2005

Dasri,

Although I am not in the same boat as you, I do know a lady friend of my wife's that was faced with a very bad future. She had Late Stage Ovarian Cancer and her Doctors told her that she had 2 years to live. They instructed her to get all her affairs in order as soon as possible because they couldn't guarantee even 2 years.

So, she followed their suggestions and decided that she would enjoy the remaining time she had. This news by the way was given to her 6 months after she had retired from her job of nearly 35 years. She also did her Chemo treatments and was a fighter.

The good news is, this all happened 7 years ago and she is still doing well. The Doctors know allot, and I have to say that I was lucky to have the one I had. But they don't know everything. They don't always know how much heart a person has.

A old saying that I have heard and pass on is this " It's not the size of the dog in the fight, but the size of the fight in the dog ".

You have been down a very rough road, many people here have also traveled a pretty bumpy road themselves. I look at Hondo and he has fought the beast 3 times. I have gone 2 bouts with it. Live each day the way you want too. I was told that it is okay to treat ourselves good after all this. To me, treating myself good is to try and be a better person then I was yesterday. Other people may buy themselves something. And others volunteer at a hospital. Pick something you enjoy and go forward.

Only God knows our Expiration date.

My Best to You and Everyone Here

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

Hi Dasri

I went to my first support meeting last night. It was a chapter of SPOHNC-Support for people with oral and neck cancer. The contact person for Mn. is Colleen Endrizzi 952-545-0200. This is in Mineapolis but I'm sure she can direct you closer to home if need be. Mayo is sure to have a monthly meeting. I'm feeling much of what you are feeling. I'm cold all the time and tense up a lot. I thought my thyroid was acting up but that tested ok. I also lost 40 pds. I believe we are both going through an anxiety period. I noticed last night at my meeting that people worse off than I were dealing with it much better than myself. I am sure I have depression setting in. They told me I'm just out of treatment and this is normal. I am scheduled to see my Dr. today and plan on getting back on some medication for a while. Are you taking anything for anxiety? Why not check out a local meeting. I am mirroring much of what you describe and found it helpful, made some friends, and will return for the next meeting. A couple of minutes of research on your part should turn up a local meeting. The national number for SPOHNC is 1-800-377-0928. You may want to subscribe to the newsletter and the support information it provides. Best of luck and keep talking to us. We sound identical, small world.

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Badly. I understand completely the feeling of being alone. No one can know what runs through your mind while all of this is happening. The good news is that even if I have been handling the problems badly I am still here. So I take that as a positive. That is what I do. Find a positive and build on it.

Finding a commonality among all this carnage of human flesh and personal feelings provides me a motivator that comes from my midwest farm religious background which emphasized guilt as a major motivator. Reading of all the problems that others have endured pale my story which is with out much drama. I did the treatments of chemo and radiation, suffered through mucous and dry throat, lost more weight than the average man weighs, and did not swallow any food for a year or more. But all of that is done with and I am returning back to what I once was by accepting the new normal.

Guilt has a way with me that provides a motivator. I guess I did not have it so bad? Look at this other poster who has family drama or worried about a job loss, visible scarring and loss of flesh, or what ever horrible malady has happened upon this participating cancer victim of this forum. It could be worse! But it wasn't!! It is what it is.!!! I pretty much feel that I did not have a choice(even though I did) once the cancer treatment started. I certainly did not understand what was really going to happen to me before, during and after my treatment.

I was a head in the sand type of cancer victim. It made the journey harder for me. Not understanding the loss of control of my body was debilitating my recovery. I have done a lot of things to get better after cancer. Coming to this site to read, learn, and understand exactly what I went through has helped me significantly. I am better and I am not alone thanks in no small part to you and the other members of this forum.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Dasri,

I have not gone through my chemo and rads yet, but I can tell you this , It seems that most everyone around me seems oddly to think I am cured. I had neck dissection to remove the mass on my neck, SCC primary right tonsil. This is stage 4 and they think since the surgery was a success that the chemo and radiation are precautionary. Gotta tell you if they were precautionary I wouldn't be going through this hell. Don't know how to convince everyone that it is still serious. So while I don't have any suggestions for you, I know where you are coming from.

Best wishes,
Steve

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I have a hard time too convincing people that this is serious. Since my PET and CT scans came out good, and I am going to have surgery, they all think will be over with. I said I most likely will have radiation and possible chemo. Everybody has been supportive but they just dont understand.
Mary

ratface's picture
ratface
Posts: 1254
Joined: Aug 2009

I'm scheduled to go back to work next week. I anticipate a lot of questions. I'm sure the number one question will be "Are you going to live" The answer to this will for appx. the next ten years if I beat the odds is that nobody knows. This cancer as well as any cancer can and does kill. Society forgets that. All they hear is some "Pink walkathon" where everything is hunky dory and everyone survives. Absolutely not true, many people die from breast cancer. Head and neck cancer is the stepchild cancer, no races, no walkathons. Even if your treatment goes 100% you are still living from scan to scan, perhaps no different than the rest of society in some respects. I assume it gets easier as the scans go by.It obviously makes me angry when someone asks "When are you comming back to work" I want to say "When I damn well please and am ready" The only response I have to how are you is "I'm OK for the moment" I've had two doctors tell me in the last two weeks, "Don't worry be happy". I know they mean well, but what absolute bullshit. How many of you have been told that "Bad things happen to good people" More doctor bullshit. Doctors, all we want is to be treated like intelligent individuals who can actually grasp complex facts.

The treatment is the easy part. What I'm finding out now is that post treatment is a longer road with many emotional issues to deal with. back to my previous post, it seems this is a learning curve that some of you old timers have mastered. I'm quite sure i'm still in the angry mode. Question I asked at group with little response, "How do you keep fear at bay and just live a semi-normal life again?

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Great post ratface. I'm 3 days into treatment (blogging on my website www.justwrite.us) and what I have found so far is that people with cancer (myself included) are much more than their cancer. Your post and all I read here validates that for me daily.

I am a former journalist and as a counselor I know story is very important, so I am initiating a project to document cancer stories. I've put an add in craigslist for anyone in my area who would like to tell their story, their way so they know they've been heard. I've already had one response. We'll see how it pans out.

To answer your question about how I keep fear at bay, I think is in hearing and listening to stories about cancer. I know there are those who say "too much information" but what I am interested in is the person, their perspective, knowledge, and feelings. That's where the 'real' is, if that makes sense. I think when I hear that I feel connected to something bigger than me and calms me down.

Best,

Mick

MarineE5
Posts: 762
Joined: Dec 2005

Hi Steven,

I hear you loud and clear. I had the neck disection and part of my tongue removed. My former business partner acted as if I had a bad case of the Flu. Then there are those that truely understand what we are dealing with daily.

My Best to You and Everyone Here

Dasri
Posts: 5
Joined: Feb 2010

Thank you for your comments and input. I am glad to know that at least I'm not the only person dealing with this issue. I am planning on checking out a few sites and/or contact people for a cancer help group. I just have to see how close they are to my area. The closest major city to me is La Crosse WI which is just 30 minutes away versus Rochester MN which is 60 minutes away.
At one time I could have returned to work but they laid me off due to the slow economy. I am currently attending college to get a degree but even that seems to be a bit much. I think sometimes I have too much time on my hands and for me, that's not good. I was always busy and had something to do. Now, there really isn't much and maybe I need to figure out how to stay busy without having any "side effects" like fatigue. If I do too much in one day, I am usually fatigued and tired for 2 days after. Gets sickening after awhile. Thanks again for the input.

Hondo's picture
Hondo
Posts: 5927
Joined: Apr 2009

First I would like to welcome you here to CSN, you are now with a lot others who understand what you are going through.

You made some very hard choices in your treatment and sounds to me like you made the right ones, you are still here. As you have notice things are a little different after treatment, your immune system is not as strong as it once was, reason for the pneumonia may be. Our problem is getting uses to this new normal and understanding our bodies and how the side affects affect us after treatment.

Another big problem is depression and worry after treatment, it is very easy to happen to all of us; lean on your support group and talk to your doctor about it. Your friends will also need to understand that a person who has been through what you been through will need extra support.

When you get time please read Matthew 6: 25-34 we sometime just need to remember that there is nothing we can do but put our lives in the hands of Jesus, give him the worry and stress.

Take care and please continue with us here on CSN

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Dasri- considering what we all have been thru, comparative to the others we work with and socialize with, they probably cannot relate to us. And, that does make it difficult for us. Bottom-line: maybe it's the treatment's side-effects of suffering, or maybe it's where the extreme meds take us, or maybe it's just having to stare the Spectre of Death in the face every waking hour for many months- NO, Dasri, it is all of the above. To have survived what each of us have, with head and neck, is to have survived a most trying of ordeals. We all know this to be fact. And to get-on with our lives like very little has happened, when we know otherwise- not the easiest of reckonings. At best, we must be so very thankful that we have survived, as we all have. And it is this which we all must focus on, as we move forward, albeit with knowing that C has been fact within each of us, and may return, and we deal with the continued side-effects. We are still alive, Dasri, and that is the most important fact. I struggle with life, now, over 15-months of being a survivor. And my continued life is a struggle for me. Still, I cast breath, and thank the Lord each night for another day of life. You still survive, Dasri, and that fact outweighs all else. What you have survived is a very large battle, which most people cannot fathom, and may not have been able to survive as you have. All which is inadequate, or shallow, is with them- not you. Realize the enormity of what you have survived. Then, please, move forward.

Ratface- excellent of you to contribute what you have in this thread. Such as that is very much why we are all active on this forum.

Believe.

kcass

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey everybody,
Got this in an e-mail today and it seemed to fit this thread. Well really it fits em all!!!
To participate in our lives does not mean that we control our lives.
Not to control our lives does not mean that we are passive.
The most healing thing we can do for ourselves is to participate in the process of our lives as fully as we can
- even when the unexpected and the fearful happen. ~unknown
So yes we must move forward, be it the beginner or the post treatment survivor.

Best to all,Steve

pk's picture
pk
Posts: 192
Joined: Aug 2009

I think the only answer is forward. My husband, Bob, is probably not as educated about his cancer as some of you are. He has approached it this way: Once the shock of the diagnosis was over he embraced his treatment and did everything in his power to get thru it by following his oncos orders, taking his pain meds and keeping up his nutrition. Yup, he worried about that first PET scan, but now that he has made it thru that which was in early Jan., he is carrying in his mind and heart that he no longer has cancer. He truly does not worry very much about what might happen next. I wish I could say the same. BUT I am just happy for him that he feels at peace. Hopefully, he will be able to feel this peace for a long time.
Blessings Everyone!!!
Phyllis

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