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Need some advice/experience


Carleen

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Hi Friends,

I know there are many people here that have gone through what my husband and I are about to experience, so I am asking for some help.

For the past two weeks, my husband has been having pain in the crook of his neck, right under the collar bone up the curve of his neck to the side of the neck, where he has an enlarged lymph node. The pain has been getting progressively worse, where lately he hasn't been able to hold his head straight, and even oxycodone isn't cutting through the pain.

We are going to have radiation done on his neck to alleviate some of the symptoms and pain.

Keith has Chemo Monday, Tuesday and Wednesday. Monday we meet with the radiation oncologist to start the planning stage of radiation, and the actual procedure will most likely occur later in the week. What can I realistically expect as far as side effects of doing chemo and radiation together. Keith is already pretty wiped out and sick from the chemo, usually for about 8-9 days. Also, I've read about something that can be taken prior to radiation to help minimize the occurance of esophagitis or throat problems from radiation. If anyone is familiar with what we can do to minimize problems, I would greatly appreciate any advice.

I am so afraid that the chemo isn't working and that this cancer is growing since the pain is increasing. Has anyone had experience with increasing pain without increased tumor size?

God I'm so scared. My heart is breaking, and I'm back to crying uncontrollable when I'm not around Keith. I don't know how much more I can take of this insanity. I am telling Keith everything is going to be ok, I'm putting forth a positive demeanor to everyone in our lives, even telling myself these things repeatedly, but I'm finding it harder and harder to bear this as my heart is in fear and disbelief. I'm losing strength and courage. I'm losing faith and hope. I'm losing my mind. I'm losing my will to live on.

In fact, I publically make this Vow/Plea to GOD above. In front of you my witnesses and my friends. I will GLADLY give my life, I will GLADLY take this lung cancer upon myself, if only God will spare my Keith, my love, my heart. Please God, let it be me. I can take any pain and suffering except the pain of watching Keith suffer.

Sorry to sound so melodramatic, I seem to take one step forward, then two steps back.

Thanks guys!

Carleen

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Carleen,

My heart aches for you. I believe this crap is sometimes harder on caregivers than the patient.

I had radiation & chemo combined, but the chemo was to boost the effect of radiation and, therefore, not really strong doses. I had throat problems, but couldn't decide if it was from acid reflux (chemo) or a burned esophageous. Also, I had stuff to take before chemo, but not for radiation.

I hope Keith gets the desired results from the radiation, without ANY side effects.

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Carleen,

I am so sorry for this new stress. I did the same chemo as Keith along with radiation back in the spring. I don't know how much worse the radiation made it than the chemo alone would have since I never did chemo alone, but I was pretty worn out for most of that time. (I was also recovering from major surgery during that time.) I didn't take anything for the throat pain until the throat pain became a problem, around the end of the 4th week. Even then, my throat pain wasn't too bad as long as I didn't eat stupid things (Fajitas were a BAD idea, even though they tasted really good.) My radiation oncologist told my husband and me on the first visit that I would probably have a lot of fatigue and that my job was to sit on the couch and relax and his job was to bring me whatever food and drinks I wanted.

Good luck to you both and hang in there!

Becky

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Please do not give up hope. You are the strength that Keith is is depending on. You are in the same seat as my husband and he sometimes admits he wishes he could die first because he can not imagine being with out me. I try to reassure him that " he just might!!" He then laughs it off but I really believe it is harder on the other partner. You just keep hanging in there and vent all you need here. Love ya! cindy

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Carlene,

First, you need someone that you can talk and cry with in person. You can't do this alone.

Second, Earl took Carafat right before and right after each radiaiton treatment and then in the morning and at night on the weekends. He had no esphagus problems at all and no side effects from the Carafat. Can't imagine your doctor wouldn't write a script for it.

Hang tough Carlene, with all our prayers this will get better.

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Hi Carleen,

I am so sorry you have to go through this stress! I know the stress of this damn disease makes me feel like I am losing my mind. Somedays I want to disappear and pretend it doesn't exist. It would be great for you to find a friend or confidante that you could cry and talk to and not have to put on a strong face for. I cry to my husband on the tough days and it helps me a lot. The effects of going through this are heartbreaking.

My mom begun radiation and then a few weeks later started chemo and had them both in conjunction for about 4 weeks. Now she is only doing chemo. The main effect of doing both for her was that it dropped her white blood cell counts too low to receive chemo. Overall though, she handled both of them together pretty well. Her throat was very sore from a burnt esophagus.

I pray that the radiation will bring Keith some relief and that the cancer is also being killed. I wish I could also say the magic words and make it all better for you. Not having control is so difficult. Please know that you are not alone. You are in my thoughts.

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Dear Carleen,

You and Keith are going thru so much right now. But it WILL get better. I had chemo and radiation at the beginning, with radiation ending after 32 treatments. I had that esophogitis and i had drops to use before i ate which kind of helped. Steer clear of acid based foods, like tomatoes, tomato sauce, orange juice or orange ices. Try ice cream as that soothes things abit. Also nothing spicy, just plain things. We'll be praying for you both. Don't give up it gets worse and then it gets better.

Joanie

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Carleen,

Keith is young and strong! Keep the faith and hang in there! Jenny G had radiation twice a day and she had ethoyl shots. My Mom had no problems with radiation, I hope it will relieve some of his pain. My Mom had alot of pain from different things, collapsed lung, and she had that big lymph node on the neck. She also had some pain in the middle of treatments, don't forget that the white blood cells are also down. Oh Carleen I wish you didn't have to go through this.

Bless you and Keith

Laurie

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My sweet Carleen-

I am so sad for you right now. My heart is breaking, you are so strong my friend. You really should try to talk to someone in person, someone who can hug you and let you cry on their lap while they pat you. Something like that. Don't ever give up hope. EVER!!! Please, I know how it is, My faith is starting to drift to anger towards God, but then I try my best to calm down and then remember he is my father, and then I cry. Then he comforts me. I'll be praying for you my dear sweet friend. You hang in there okay.]

Rana :wink:

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We never experienced radiation - Dad is not a candidate for it we were told, so I don't have an insight on this. Just know that thru these replies are alot of support and love and we are always here for you.

Praying for you both always,

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My dear Carleen -

I'm so sorry to hear you so down in the dumps and Keith in more pain. Know that we are all praying for some relief soon - you are such a blessing on this board!!

I had radiation in conjuction with chemo and faired pretty well. Had some trouble swallowing, but never needed the meds. I was very tired - as my dear hubby used to say - I would fall asleep mid-sentence!!

God had truly special plans by bringing you into our lives - and while I wish your love, Keith, wasn't going through this - I, for one, am thankful every day to be friends on this board. Keep praying and don't lose faith -God hears you, dear Colleen.

Terrie

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Carleen,

It is so frustrating to see our loved ones in pain. It really tears me up to see my husband struggle with it while I feel so helpless. Right now Bill is having radiation to his back and pelvis to lessen the pain while he is on chemotherapy. They are watching his white blood counts to make sure they don't get too low or the next chemotherapy will be postponed. He is extremely fatigued. And I feel like I am running on empty trying to keep everything together.

Hang in there friend. I hate that this is so very hard for you and for me and for everyone else.

God bless you,

Peg

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Carleen -

You need to let loose on someone Honey - it's hard to be tough for everyone else all the time. You have always written so eloquently and sensitively, and your love for Keith touches me.

So how far are you from Chicago?

Hugs and prayers,

SandyS

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Carleen, The feeling of not being able to fix what's broken is what all of us care givers are going through, it sucks. I too would trade with Gene if I could. We need to be there for our husbands but we also need someone to be there for us. I wish we all lived together because this Board has become the 'family" that understands and gives support unconditionally. Do you have a church group that you can go to? I found great support through the church without becoming a fanatic if you know what I mean. I also use stress tapes because sometimes I get so stressed out just crying that I can't even think. We are praying for you both, hang in there keep the faith!! Carol

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Carleen, so sorry that you are suffering so much. It is very hard on the caregiver. About radiation and chemo together, it is a double whammy! Watch for dehydration (it is hard to keep up the proper liquid intake). I would even ask if Keith could have an IV once a week. The other danger is infection, because the immune system is being taxed by two things. Take his temperature routinely, and watch for any symptoms that might indicate infection.

As others have said here, you need not to be brave to everyone. Lucie is the only person in this world that I try to be "up" for all the time. Anybody else gets just what I feel at the moment. It really bugs me when people ask how we are doing and expect me to say, "Great!" I don't oblige them, unless I really feel that way.

And, yes, you need someone to care for you on a routine basis. I feel that is essential for all caregivers. I meet with a friend once a week, and boy, do I unload. He listens very well, and is not condescending. I am blessed with him. We are not Superman and Wonder Woman. We need love, caring and support, too, so we can take very good care of our loves ones. It's really okay and normal not to feel "Great" all the time -- it is very freeing. Blessings to you both. Don

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Carleen,

Most have been involved w/ this disease much longer than Cheryl and I have... I too, thought that I had to be the "pillar of strength" and to be able to stay positive no matter what comes our way. What I have learned over the past 2 months is that there is no way one can stay positive with all of the bumps in the road. I realize now that it's OK to show that you are scared to your loved one. Heck, I think, if nothing else, it shows your loved one that you are human and that you are going to have those feelings just like he or she does. I am Cheryls greatest advocate, but I am not invincible. We cry together and it seems to give a certain sense of ease that we are both sharing the same fears openly. Don't be afraid or ashamed that you have fears of losing Keith... it is more unnatural and harder on yourself to try to act as if the possibility is not there. Keith needs you by his side to more or less "manage" his recovery, that is what he is counting on and not how well of a job you are doing in keeping him "positive." The ones that have this disease know the seriousness of it and appreciate the caregivers efforts to keep them positive, but I think they are more greatful that they have a loved one who is watching their backs, asking the tough questions to the Doc, scheduling and preparing, and being mentally sound to catch their slack when they are 'worn down." I hope I am not sounding too insensitive, but I do think the caregiver is harder on him/her self than they really should be. My advice is to relate to Keith your fears... he has the same fears as well and certainly won't get upset for you having those thoughts. People with this disease could only hope for a caregiver as devoted as you are. My approach is a little different, and may only work for me, but I have to be realistic to keep my sanity. Only God decides!

Jack

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Carleen

My heart breaks for you and your Keith. I have no expericnce at all with radiation (so far) so I cannot help you with that. I can just offer you my prayers and I will be praying for Keith and for you. You are both going through so much right now, try to take a deep breath once in a while and find someone to vent to in person. I wish I lived near you so we could get together and talk and unload. You will get through this just as you have gotten through all the previous steps, you are a strong woman and things will get better. Hang in there my friend, we are all pulling and praying for you

Best

Bess B

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Sorry for I can't help to give any info or advice to you with reference to my dad's case. But, I would like to share a song with you ~~

"God will make a way, where there seems to be no way, HE works in way, we cannot see, HE will make a way for me."

Sometimes, we don't know what is the best for us, only GOD has His own plan and will.

Hang in there.....leave it to HIM.

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Carleen,

I know so well what is going on inside you right now. I feel that way 24/7. I am a control freak and this is something we cant control which only sets off the CWD in me.

From my moms experiance with chemo/radiation. At first we didn't think radiaton was doing anything because she was on the steroids and it only took 5 minutes for radiation. Then about the 10-11 treatment (she had 14 total) BAMN major major fatigue and dizziness and exhaustion and dehydration and rash and bad bad acid ruflux. he doc. prescribed sucfulcate( sp) and it was steadily gone. Then bamn again. major major joint and muscle pain. Crippling pain actually. she cried it hurt so much. Me and the CWD freaked out thinking BONE METS. Well hopefully its just chemo induced arthritis, but we know for sure when pet scan is done on the 18th of july.

take a deep breath and cry somewhere away from your husband and then get mad and fight harder.

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Thank you everyone for all your replies.

I will definitely talk to the oncologist about the hydration IV, carafat, suflacate and numbing drops. I am really hoping the radiation helps alleviate Keith's pain without too many wicked side effects. I'll also work on the diet, which will be hard, as everything he loves has a tomato sauce or is spicy. I just can't bare to watch him miserable and in pain any more. Something has got to start working for us.

It was easier to be in denial and keep up the attitude a couple of months ago, because Keith was feeling completely fine other than the chemo nausea, which was minimal. He was acting almost completely normal.

Now, it's so hard because I know the last chemo didn't work so I've lost a little faith and momentum. Plus, he is seriously sick from the chemo for longer periods of time, and now has intense pain. It's impossible to act like everything is normal, which is what I know Keith wants to do. He really is longing for that feeling of normalcy, and that everything is going to be alright. He keeps asking me to reaffirm that I think everything is going to be alright, and that he is going to beat this. It's like he has a hard time believing it if I don't believe it. So, I always have to have a good face on for him. He's so scared himself, and he needs me to believe in him.

I know I need to have someone to talk to, but that is difficult. So many of my friends have stopped calling. I have one friend I talk to, but she is so busy, I'm lucky if I can talk to her for 30 minutes a week. My family has been great, but I feel like I am really weighing them down with all my crying. Keith's family is too devastated to talk to about anything.

I was seeing a counselor in the area of my job, but he was really strange and never really talked to me about my specific problems. I'd come in and he'd put on a progressive relaxation tape for about 45 minutes while he sat in his office doing paperwork. Then he'd come in for a few minutes to go over next weeks scheduling and some home exercises he wanted me to do. Unfortunately I live in WI and work in Crystal Lake IL, and can't get to an office in WI during business hours without taking time off of work. He was the only couselor I could get to that was covered under insurance, so I stopped going. I guess I figured I get a lot more of what I need and support and love here than I ever did from a couselor. You guys are my lifeline. I am so grateful for you.

Thank you everyone for all your advice and continued support and prayers.

Carleen

P.S. Sandy, I'm about 2 hours north west of Chicago, but actually get in the area quite often. I used to work in Kenosha, just across the WI border, now I travel to Crystal Lake IL. I'm used to driving alot. What area are you from?

P.S.S. Sorry for the novel length posting :)

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Carleen, your were right to drop the non-counselor. What a jerk! I hope you can find someone you can talk with, even if it is just 30 min. Each patient is different and the spouse usually knows what the patient needs and what will work at any given time, so trust your instincts with Keith. Keep the faith, keep hope, and definitely get continued support and care here. Don

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