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almost done

Klynten
Posts: 29
Joined: Dec 2011

Hello Forum,

Well I am on the last stretch. 5 more rads and one more chemo and I am done with the current active treatment plan. It is weird, the infected lymph nodes that were oh so visible are all but melted away. I am so excited to get this phase over with and start towards recover from treatment.
I have stage 4 metastatic Squamous Cell Carcinom with occult primary (five nodes on one side none bigger than 6cm so TxN2bM? i quess)
I have had a pretty rough go of it, and my wife hasn't exactly been really understanding (well not at first, she has come around more lately) My first 3 week were pretty normal from what I remember, was able to work reduced schedule, mainly due to constraints on my time and chemo hit me pretty hard, I was terribly sick and thought I was doing better by day 7, days 8 and 9 hit me like a truck. I have a PEG tube in and a central line, was sick of being poked so many times. The peg has been my gremlin at first. Me being largely overweight, my water requirements and feeding requirements have been on the high end. And the formula they started me out on was a high protein formula. I didn't tolerate the high protein formula, nor did I tolerate any siqnificant amount of fluid in my stomach. Went to the hospital, doc states I have free air under my diaphragm and that is causing full sensations, I said great... lets charge this air a couple hundred bucks, the'll move out and get jobs cause that is expensive... lol. doc states it doesn't work that way (he didn't even skip a beat, he was a funny guy) so I end up going home, back and forth to kaiser for iv fluids, almost every day during my first cyce of chemo. I end up being hospitalized on day one of my second chemo cycle, I don't remember anything for the next 3 days, i went in to the hospital cause my weight loss was becoming too much. Doctor believed it was almost time to feed me through an IV and decided to admit me. Meet a smart registered dietician, she changed my formula and slowly added to the mls per hour till I was at goal. So know I run for 16 hours and am off for 8 hours. I try to flush a lot during the time I unhooked, but so much time and so little to do, hehehehe.

So, here is where I am at now. I am completely dependent upon anti-nausea medications. If I miss them by more that an hour, I am vomiting uncontrollably, I was on oxycodone 10mg 4 x day but it wasn't touching the pain that much. So I am on Roxanol 20mg every 4 hours, which definetly helps with the pain, but makes hallucinate for the first 30 minutes when it kicks in. My neck is burned up pretty bad, right in the creases of my neck fat. My right side has a rather big burn, one behind my right ear, and the left side of neck is oopening good and proper. I have started loosing hair in the radiation path, wich is all around since they have no primary tumor to target the treat the whole pharynx, larynx, trachea, tonsillar bases, bot ect ect. the mucosistis has been a monster, I went ahead and got a suction machine, very wise investment. I think stress has played an important part of my illness as well. My wife and I fight over stupid things. My first day from the hospital, we get me settled in, and after about a half hour, I taking all i could, stated could everyone please shut up for 5 minutes. The ringing in my ears was horrible an I felt everyone's voices were like machine guns going off, she didn't take kind to me being a little rude. She resents me, she wouldn't come out and say it but she does. Says stuff like, it isn't fair that all this stuff is left to me, you can't help and I know that but your the one who gets the grief. I have set up sitters for the kids and for me, had her go places with others, where the goal isn't taking care of me. Like right now, her alarm was set cause I can't miss med doses or I am vomiting. Well I woke up on my own and she snoozed her alarm 20 minutes ago...... not like her. I fear I'll heal up and she'll be gone. She blames me for this. Years of smoking and not taking care of myself, she gets the I told you so mentality going on, and not afraid to through it in your face. She says she loves me, but we had problems prior to me being sick and I don't think she can get past them. All well

Anyways, it could always be worse. I love my wife and kids, my family and friends have been super suportive. The nausea and vomiting will go away with time, the burns will heal. The blood levels will return to normal. They say I should get used the the ringing in my ears, but that should be permanent and could cause some permanent hearing loss. I sometimes wonder if my current situation, life will be enough for me. I see so many changes in me. My heart and direction and purpose have all been given a gift. I will never be like before, whether I weed out those things that make me weak or strengthen those traits that make the best. I will not go down a path that leads me to despair or self loathing, I will rise like a pheonix, new and glorious! Ready to face a new life. Hopefully it will be one my wife wants to journey with me,if not, no hard feelings, I just have to fly forward, never to allow me to wallow in self pity and self defeat. For too long have I been the self hating, afraid of changing coward. Sure I but on the happy go lucky facade around others, that facade is definetly a huge part of me, but I want to be real. It is time for clinton to take care of his own. To place my self first in life, not base my self worth by being codependent any more.

Thanks for listening to my ramblings
Clinton

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

Ramble on sir, if this is the only outlet where you can express your thoughts and feelings then so be it, there are a lot of people here who undertand. Your almost done with your treatments so keep your eye on that prize of finisihng and getting on with your life.

Blessings

Linda

longtermsurvivor's picture
longtermsurvivor
Posts: 1804
Joined: Mar 2010

These weren't ramblings, Clinton. They were a concise treatise on how to set proper, necessary priorities. The issue isn't whether things have fallen apart around you. The issue is how you deal with those things. There is not a word you've written here that isn't proper and correct, and absolutely necessary for your survival.

The question is, how to maintain your necessary focus, and to keeep moving in the right direction. I'm glad to hear you have a support system. This would be very difficult otherwisee. I'm sorry your spouse is not with the program of your support, because you are fighting for your life, not merely to maintain some kind social structure that you aren't physically or emotiionally able to maintain rightnow, even if you wanted to.

To that end you have to maintain your focus. Your health comes first, above all else. Your energy levels requrie you to lean on someone or system even to achieve that. All this other will just have to sort itself outover time.

Be prepared for the fact it will take time after treatment ends to heal. More time than you and I wish. I finished treamtne a week ago. Told you Icould see you in my rear-view mirror:) I had better luck than you. I didn'lt have treament problems, and my wife was very supportive. So at the moment, my recovery is going smoothly. But one week after rads, the rad effect is worse than it was on my last day. That will last awhile, then improvement will begin. So it will with you too.

Be very patient with yourself, and use yoursupport system.

Glad to hear from you.

Pat

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Congrats on enduring the war....march forward.

Best,
John

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

Stay strong and get better.

NeoTheron91
Posts: 77
Joined: Sep 2011

Hi Clinton,

Congrad .... nearly end of the finished line for the treatment and then recovery period. Welldone!

cheers,
Neo

Mikemetz's picture
Mikemetz
Posts: 346
Joined: Nov 2011

I am always saddened when I hear stories like yours. Very different from your situation, my wife could not have been any more supportive during my treatments, and in the three years since my treatments started. I can honestly say that I would not be alive today without her. But even so, every cancer patient must determine what is best for them, and do whatever it takes to get what they need to survive this terrible disease--no one can do that alone. If you are forced to pile other stressors on top of the physical and mental ones that cancer forces you to deal with, that reduces the energy you have to fight the "beast" and eventually you'll just give out and lose the battle. Make survival your top priority and if things or people get in the way of that, then do what you need to do keep your focus on beating cancer.

Please stay in touch with us on this discussion board--you can count on the many great people here to give you lots of support and insight.

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Clinton, good rant. I could relate to all of it. Well, except the wife part exactly. I lived alone when I went through the treatment, but had help on and off from a very good lady. She lives in another town, not too far. I remember she was doing the dishes one day, pots and pans, and kept hitting the metal spigot with the pots as she washed. I was in the bedroom and hollered, asking if she could just not do the dishes or not hit the spigot with the pans.

Like you said, my ears were going nuts and every sound was like it was being shot out of a cannon toward my head. It seem like a petulant over reaction unless your the one with Niagra falls rolling through your ears. So, yeah, it's a fun time.

You're still going to feel like the devil for a while, but as time goes, you're going to feel better. Your new awareness and attitude will really feel nice once you heal. You're doing a great job. Don't worry too much about personal stuff. Everything will work itself out, one way or another, once you heal a bit.

best, Hal

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