I have been reading this forum for the past few months and have been helped a lot by reading everyones struggles and triumps. My husband just finished his rad and first rounds of chemo. He has a feeding tube in since April and has lost 33 lbs, but is finally keeping steady now. He still can't swallow with out pain and I am encouraging him to try. His dr. now wants to put him on a chemo pump for 96 hrs. 1 week per month for the next 3 months. He is so upset about this. He doesn't know if he wants to do this. It has been a brutal journy for him and for me. If anyone has experienced this it would be of great help to us. I told him I would stand by his decision. He is tired of being sick and tired! Thanks for listening! And God bless you all!

Hi, Ladyjoe, I'm sure you are both very eager to get back to normalcy! These treatments are indeed a rough trip. Has his Doc explained thoroughly why he is recommending the extra chemo? We did not have that, but I have a good friend who has been on a pump on a schedule much like what you described. He has not had any major problems, other than tiredness for the week following the tx. Good luck going forward. Amy in the Ozarks

Hi, I don't know if anyone on the forum has experienced it but chemo can be given that way. The pump provides a controlled dose and it's just a delivery method. Why are they recommending the additional chemo for him?

It's understandable that he is tired of being sick but I would still make sure that you both understand the reasons for this recommendation and the consequences of doing it or not doing it. After coming thru so much I'm sure he just wants it over. But what does that mean in terms of his response to treatment so far or his prognosis for the future? Make sure you have all the facts before making a decision.

It's great that you are encouraging him to swallow, it's the best way to build those muscles back.

Regards JoAnne

HI Jam, The Dr. told us for the patients who have had this treatment you have a greater chance of it not reacurring. But he still isn't convinced he wants to do this. He is afraid he will be sick the week on and the week after. He did not do well with the other chemo treatments.I am praying for discerment!

What chemo are they recommending for the pump method? Regards JoAnne

He said Cisplatin but at 180 instead of 200. My husband said it will still make me sick. He was so nuasuas with it and vomiting. Now they gave him Emend with the last two and he did a bit better.He lost 14 lbs the very first week (March) so we don't have fond memories!

In addition to the emend Jack had zofran ODT (dissolves under his tongue) twice a day, plus compazine for breakthrough PLUS I did IV hydration through his IV port for 5 nights when he was getting the cisplatin over the 2 days. The nausea can also be related to being dehydrated so we made sure that he got 3 quarts of water a day. Did they put him on any of these?

They wanted Jack to get 4 cycles of cisplatin because his lymph node involvement was so advanced. The last one occurred 1 month after radition ended and on the 2 day cycle it really did him in. Maybe if he had it over a longer time period it would have been better. Do they think there's another chemo that would have less problems with nausea?

Regards JoAnne

With his last chemo he did have IV hydration daily the week of and it did seem to help. He goes to his RAd dr. on Thursday for a 2 wk check-up so he is going to ask him a few questions also.

That's a good idea, it's another perspective on whether they think additional chemo is warrented. AlsoyYou can always get a second opionion from a medical oncologist at another facility if you are unsure about what they are recommending. It's a tough situation. If he didn't have the combined heavy duty anti-nausea drugs it is worthwhile to try that.
Regards JoAnne

ladyjoe
Sorry to hear of your husbands. I had the same type of chemo, cysplastin, I did get sick, and wanted to quit, then some in the waiting room told me, if you stop now and it comes back your going to kick yourself for not finishing. That was good advise for me at the time.
Good Luck

ladyjoe,

As you see I only had the cisplatin during the rad but I only had 2 nodes involved. Ask your MO to explain the benefits and maybe get a second opinion but don't let a bit more torture get in the way of a chance to kick his cancer back to hell.

In 6 months he won't remember the daily details of discomfort but he will remember and feel good about his efforts to conquer this virus that's trying to kill him. He's come this far so tell him to suck it up a little longer and finish his job.

ok... we had 2 dr. appts this week, family and rad. drs. They both seem to agree to continue on with the additional chemo. They told my husband you are running a race and have the best horse why change horses into the race. So.. he is still deciding. Rad dr. told him he shouldn'have as much difficulty cause he is done with the rads. Needs to continue to swallow, his throat is still extremly sore. Gained 3 lbs. yea!! He did manage to swallow 2 bites of creamed rice yesterday. Today he wants to try a scrambled egg. Praying he can tolerate it. Thanks for listening.

Hi, LJ and Yeah for the 3 lbs.! The discription of "running a race" sounds pretty accurate.Some suggestions in the foods he might be able to swallow: poached eggs, angelhair pasta with a thin cream\cheese sauce, pureed brocalli-cauliflower soup in milk or cream base-oatmeal thinned with water and mllk. Please let us know how he is doing with food. There ae a bunch of good recipes on this forum.Amy in Oz

Well, we didn't do the egg. he said he was just to sore to try. I am at my wits end. I know this is tough but you have to try. He tells me I don't have a clue what it is like. I am a 7 yr. breast survivor and had 37 rads but no chemo. so I don't know about the chemo.I was extremly tired with the rads so I can sympathize in that. Oh well, thanks for listening. Tomorrow is a new day!

Lady J,

Get him some Carnation VHC.

Another step in the right direction. Husband asked for a scrambled egg this evening and actually swallowed 4 bites! I am so thrilled. He said he can swallow but it burns like hell going down. I told him its a start. He aslo had some friends come over this afternoon. It did him wonders. He was so adamant about no visitors! but my brother aarranged for 4 of his friends to come at the same time for 15 min. His face just lit up! So today is a good day after all.
David, I do have the Carnation VHC. Hopefully he will try that too. Thanks.

LJ, You might ask his Doc about something like Lidocaine 2% viscous solution to use before he eats. It is a pain numbing med.that is swished and swallowed. It [or something similiar] might make swallowing easier and cut down on the burning. Hooray for getting the bites of egg down!
39 rad txs are not easy to recover from. Keep cooking and be forewarned that you will throw lots of things out. Amy in the Ozarks

ok, we're stil taking small bites of food. Yesterday he had a few buttered noodles and said he could actually taste them a bit . But thats good. Still haven't decided if he is going on with the chemo pump. Have to make a decision this week.Hanging in there.....

Rob is on the small bites regime at the moment,and one day he even had a piece of Salmon with white sauce,but boy is it a slow process.I find it very hard to work out why one day he will try food and the next day he wont.Its very frustrating and like you i just feel "well i dont know how it feels so i shouldnt nag him"After a brilliant few days we are back to depression withdrawal and not eating anything- god i hate this damn disease.

Keep strong
Liz in the UK

Liz,

Robin is only 5 weeks post Tx. His body is still suffering a lot right now and his recovery will be ever so slow and I'm sure his drinking and smoking won't help that process at all.

We all are hoping/dreaming that the next time we want to eat something it will taste exactly just like our mind remembers it. Unfortunately mentally we build ourselves up thinking it will and when we put it into our mouth, ugh and we realize again that we are not tasting normal and we wonder will we ever. What I'm trying to say is that mentally we are beat up everytime we go to eat and some days we just don't want to get disappointed and reminded how unpleasant it is to eat. Add to that the discomfort associated with the recovery period and you can really not look forward to meal time.

I am almost 9 months post Tx and I still fool myself into thinking I want a pizza and it will taste just like I remember so I will eventually get a pizza only to be disappointed again. This happens less now only because I have beat myself up so many times I'm getting used to a new normal taste but at least I still remember what things used to taste like and I hope that never goes away even if my taste doesn't fully return.

Give him time and continue to be saintly patient.

If it's any consolation, and I'm sure it probably isn't, I'm ALREADY at the stage of 'small bites', without having even got diagnosis or treatment yet! The tumour (that much diagnosed) is in my jaw-bone and can barely open mouth and swallowing hurts--also am a denture wearer! Had 3 years of frustration trying to get dad to eat--cooked tiny, chopped up casseroles, mashed fish (which he didn't like anyway!)and 'treats' of individual trifles, ice-cream etc.--but as Amy says, a lot gets thrown!
Am pleased with myself today as 24 hours after biopsy and in more pain, have managed chopped up strawberries and cream, some soft beef, mash and gravy and a few beans with bites of hot-dog sausage--and 2 glasses full-fat milk! Was skinny before I got sick!
And David, I'm sure alcohol and fags don't help in the long-term, but they do remind us we can still swallow SOMETHING we like!!
Brenda

I feel for all of us! Today when I came home from work Tom was actually in the backyard. I was shocked, As this is the first effort I have seen.. I had tears in my eyes! This is a SLOW process, I am always asking him What do you want?
Today is 3 wks. post treatments!!

Lj, maybe instead of asking "what do you want?", you might try "what might feel good today?" Just a subtle difference there. Amy in the Ozarks

Thanks JAM I will try that. He did eat a few spoonfuls of a baked sweet potatoe today. actually drove himself to the store today while I was at work. so that is another step in the right direction.

Baked sweet potatoes-yum-now if you could mash in some butter or some real cream-look at the extra boost in calories He's headed in the right direction. Amy in the Ozarks

LJ

Yea it is a slow process for sure ...I am almost 4 months out an only 2 out from tonisls and as David says things still dont taste the same...not to mention me being a picky eater and having consistnecy issues..I dont like mushy food ..SO for me I lived on italian ice >( I LOST A LOT OF WEIGHT , Good for me , not so much though while trying to heal !SO HOpefully he isnt a picky eater , SOunds good he is goin to store though maybe somthing will catch his EYE ! I also have to be careful, i dont have feeling on the left side so eatin there is hard , i actaually bit a whole through my tongue last week ! Not so good LOL .BUT My Gramp makes the WORLDS BEST MAC & CHEESE... I did manage to grind that up and eat it and had a good amount of caloires .....HMMMMM MAYBE i SHOULD CALL AN ASK FOR MORE LOL !!! Good luck cus I know how hard it is ..I didnt have RAd , but I did have 25% of tongue removed then 2 months later the tonsils..so eatin was no fun !!! SO I hope for your sake and his he isnt picky like me !!!!

Thats exactly what we did! Tonight he ate some buttered noodles and a bite out of a meatball minus the sauce! He even watered my flowers. Every day is a blessing. His voice is starting to come back also. He was wispering or not talking for over 5 wks. He still has pain when swallowing but seems to be tolerating it a bit better. So onward and forward in this march to vistory!!!

Shar. Good luck to you. Try some high protien shakes. Even a McDonalds Triple shake has about 800 Cal. He seems to have to have everything at room temp. We ate a lot of Italian ice in the beginning. Too cold now for him. It bascially was the rads that killed his throat. Fried it I think! Slow but steady!

ok gang, I am ready to write a book on our journey with this beast. and I even have a title "If the Cancer doesn't kill you -your wife will!!!!" I told my husband tonight" I can't wait till you are well enough for me to tell you off." and he said "you better be ready also." Love, patiences and prayers is the only way to get through each day. I guess you have to keep humor in this thing or it will eat you up alive. I keep saying to myself its not my feelings that count but .... Ok thats enough of me venting. Thanks for listening! Have a good week=end!

lady J,

Caregivers need to understand the difference between soft love and tough love and they need to know when to use them both.

I remember when I was 2 weeks post Tx and I had lost 30% of my body weight; couldn't open my mouth to talk; was writing everything on a tablet; was severely dehydrated; was badly nauseated; meds weren't working; was ashen grey; was not swallowing anything and didn't have a Peg and I was refusing to go to the hospital unless she could guarantee me a private room so I could watch my college football game. I actually wrote that down on my pad. She looked at me and said "then die watching your damn football game" and she left me alone to go to work!! I was shocked, I was like she left me, she can't leave me, I really need her. I didn't know what to do. I couldn't call her because it hurt soooo much just to try to wisper. Anyway she let me stew for about 10 mins and she came back and TOLD ME if I didn't go with her at once she was going to have me Baker Acted. Needless to say I went but I did get my private room and I did get to see my game and I did get her message loud and clear and I did write her an apology.... after the game was over of course.

I give all the credit in the world to you caregivers.

Happy Memorial day to all! Yesterday was a good day for us. Hubby asked for a baked chicken leg and I was elated. He ate the whole chicken leg, took him awhile and drank by mouth a juice class of water!! We are making progress. On Sat. he cut the grass! I was away for the day visiting our daughter in Ohio. He said he wantd to surprise me. He almost gave me a heart attack. He felt fine, just a bit tired. I told him he is a stubborn Polock. Today he is feeling crummy, probbly did to much. We have 2 DR. appt. tomorrow. He needs to make the decision of going on with the next phase of chemo with the pump. I am thinking he mite be getting anxious because of the Drs. tomorrow. So say a little prayer for us. Heve a good day !

LJ, sounds like you both are makeing good progress! I got a real chuckle out of your proposed "book title" and from reading David's wife's comment to him about the football game. The thing to remember is when a loved one is dealing with cancer- it isn't "I'm fighting cancer, it's - WE are fighting cancer". Stay strong and focused. Amy in the Ozarks

Hi all, Yesterday we had a picnic at my brothers and was so thrilled that my husband wanted to come -but only for an hour. ok I said. He ended up staying almost 3 hrs. and ate almost a whole hot dog minus the bun and 2 deviled eggs. I was thrilled to say the least.
Jsut came back form the Dr. and he gained 6 and 1/2 lbs. YEA!!! Had a good check up and the RO advised him to try at least one round of the chemo pump, told him he should not have as rough of a time being he is done with his rads. So we are leaning towards that. Also sceheduled a pet scan for the 2nd week of July, I asked if that was to early and he said no. Now as I recall from this forum most say to wait 12 weeks so I am hoping we get a good reading. I also aked him about what activity he can start do
(now mind you he has stained the back deck, cut the grass and wants to paint the front porch and start to go back to work!!!) I am so worried he is putting his energy in the wrong places. The Dr. said thats wonderful do what you can so needless to say my husband gave me one of those "I told you so looks!" So onto the next chapter in my book, take care.

LJ:
He will feel the accomplishments in a positive manner, even though it will more than likely wear him out (and you also, worrying about him)! I couldn't wait to get back to work and attempt to start "getting back to normal", whatever that means. (LOL) And yes I overdid it quite often (and still do, with criticism from my wife/caregiver, but a "go get 'em" from the Dr.'s, I'm sure they mean within reason).
I guess what I'm trying to say is "If it feels good, do it" and let him go. He's feeling as though he has his life back, so he's making the most of it. I hope this "logic" makes sense to you. By the way, hot dogs are a GREAT thing. I remember the first one I cut up in little bits and thouroughly enjoyed, (I think JAM or JoAnne originally suggested it!!) MMMmmm, it was Wonderful. Funny that was brought up, that's exactly what I had for dinner tonight.

Best wishes,
Steve

Hi, Hubby a little on the tired side today. He can't understand why he felt good yesterday and today has hardly no energy. I told him its normal thats what my friends on the forum say. I know I have to let go a bit and trust that he knows what he can and can not do. But I do worry! He just looks at me. Tonight I did a spa nite courtesy of my kids. It was great! massage and a facial. I din't realize how tense I had become. When I fianlly let myself relax and calm down I broke into tears. The masseus (sp) was so kind she told me to let it all out. Sometimes I don't know where all these emotions come from. My husband said to go and enjoy myself you derserve it. I thought that was sweet. I told him to promise he would eat something while I was gone so I could relax. He did. A scrambled egg and a couple sips of water. I was happy. So... one day at a time. LJ

Yes, his energy level will come and go. Even this far post TX, some days I feel as though I can conquer the world and others I just want to vegetate because I feel exhausted!!! Some of that is mental as well. I had that exact conversation with a friend over lunch today. (The meal, eggs of course, still one of my favorites) He agreed that I was my own worst critic as far as my speech, physical appearance, etc., so that mental aspect can play heavily into things at this point as well. It's great that he's eating and you got a well deserved break. Great for both of you today!!!

Steve

LJ,

He will have a few good days and a few more bad days and eventually his good days will start to out number his bad days. I am 9 months post and I don't have any bad days now and haven't for many months. It just takes much more time than we think and especially much more time than we want but in the scheme of things he will return to almost normal quickly, certaintly in less than a year.

Thanks guys, your words are always encouraging. I read it to my husband and told him "I wish you would go on this forum, all these good people have gone through or are going through all you are expierencing." Another one of his looks! But at least he hears me out. Tonight he asked for a cup of chicken noodle soup. He said it felt so good on his throat. He even asked for more! I know this may sound silly when I report what he eats to you all, but I feel you understand our small triumps! It helps me to share. He is still very tired today but did water my flowers outside. He would like to try and go to his office tomorrow for an hour to see everyone. I couldn't believe he wants to do that. He hasn't worked for 8 weeks now and I think he is missing it .Thanks for listening, LJ

Dear LJ, it sounds like you both are doing really well And lots of us here rejoice with your reports of every bite he eats! Hopefully he will be able to go to work AND have enough sense to come home and rest when he needs to.For sure, he is headed in the right direction. Amy in the Ozarks

LJ,

I used to print selected posts and leave them out for my wife/caregiver to read because she wouldn't go on the site either. I found that worked but only if I didn't bombard her with all posts.

We didn't make it to work of Friday. He was just too exhausted. He said what the heck happened to me these last few day? I told him it was ok, that he was tired. He slept quite a bit on Friday. Today is a better day. He woke up with more energy and that made him feel in a beter mood. We even had some company today and he sat at the table with us and picked on a few bites of watermelon. He is geting extremly upset about the spitting and wonders when the muscos will subside. He says that is one of the worst parts of the Rads. So any time table on that would be helpful. He can go about 15-20 min. without him spitting,which is much better than before. I try to tell him he just has to be patient. His favorite line is "you don't have a clue! So...

Tough times don't last-tough people do! (just finished reading the book it was excellent. Of course it was given to my husband but he wouldn't read it. so I did.) It probably helped me more! Thanks,to all. LJ

Know the feeling...where does that mucous come from. What is it exactly? My husband just started that spitting into a kleenex. Is there anything we can do to help. When is it expected to stop? He has 1 more radiation to go. Uncertain at this time about the chemo??? Any suggestions are appreciated. Carol

LJ and Carol,

I believe the spitting part lasted about 3 weeks or so for me. I used to carry a small styro cup with a tissue in the bottom everywhere I went and kept it on my nightstand.

Yes this was a gross part but looking back, everything was gross, so tell your H's to just go with the flow and this phase will pass in due time.

The side effects that are the worst are the ones that last the longest....weakness, dry mouth, poor
taste and the mental stress.

Went to the MO today and they changed our treatment plan. We were suppose to be thinking about 5FU for one wk. per month for 3 months. Now the MO thinks 3 treatments of Carboplatin with taxel shoud do the trick. So thats what we are going to do. My husband said if he can't tolerate this he will end it aftr one treatment. He is so tired of being tired! Dr. thought he shouldn't have as hard of a time as this treatment is not as harsh as Cisplatin and he will not have the rads. So... we shall try this. He did eat a 1/2 cup of cottage cheese and a few bites of watermelon tonight. Grateful for one day at a time. Went to the support group our MO has and I told them all about this wonderful site! thanks to all of you!

WEll, hubby finally went to his office this morning, thank you Lord! I was elated. I know he was so tired but he wanted to go in. He hasn't been in since March 26th, He said his office staff was shocked to see him and shocked how he looked. I told him 3 months makes a hugh diference. we, his family thinks he looks great but for people that haven't seen him it is a bit of a shock. He is sporting the Sgt.Carter look in hair styles! He stayed about 2 hrs. and said he was exhausted. Is there anything he can do or take that would increase his energy level? Still not eating much by mouth maybe 3-4 bites. daily. Maybe I am expecting too much to soon. I am worried that starting his 2nd round of chemo on Monday will just take him 10 steps backwards. Oh well, I am greatful for today.

Great step forward for both of you and i had the same problem with people being shocked at how Rob looked .I saw him every day and although i was aware he looked different i thought he looked good by the time he started to go out again.To people who hadnt seen him for a long time it was a bit of a body blow and they found it difficult to hide their surprise at the weight loss and short hair,and his general air of frailty.As for the energy levels, i think that is just a time thing and after all he is still undergoing treatment so try not to expect too much.
Good luck with the next round of chemo.

LJ,

I know when I was 4 weeks out I was swallowing 3000 calories of VHC which contains a lot of protein and I was also drinking a lot of water and eating a small amount of normal; food. I felt really good compared to the 2 weeks following Tx but I was still tired and weak. His body is going thru a lot of changes and trying to recover from near death and it will take several months if not longer before his strenght and stamina begin to return. Tell him to go with the flow and don't push his body thru it's recovery process.

Thanks to all of you for your words of encouragement. I guess I just want the old Tom back. But know it will be different. He is taking 2500 calories in his peg tube and 6-8 glasses of water also. Just wish he would want to eat more by mouth. A few hours ago he said he felt fain and dizzy, it passed in about 20 min. I wanted to take him to the ER but he said no way. He drank some water by mouth and said it passed. I told him maybe he was geting dehydrated and put the air on in the house. It is so hot and muggy here in Western Pa. Everyday it is something diferent.

Its been a rough week-end! Tom's blood pressure was sky hi but of course wouldn't go to the ER. I told him if he passed out on me I am calling an ambulance. Love, patience and prayers, seems what gets me through. Well this morning we went for chemo our first of three on our 2nd round. "I am telling you this, if I get sick, I am only doing one." he tells me. "Fair enough" I said. But he did really good through the treatment. He is resting now and for the first time since Feb. he has picked up a book to look through. Praise the Lord. The nurse asked me how I was doing as I looked tired. No joke! I am mentally spent. So praying he does well with this. In case you haven't read it, here is my new prayer>>> Lord, I pray for Wisdom to understand my husband; Love to forgive him:Patience for his moods. Because, Lord, if I pray for Strength, I'll beat him to death.! AMEN. I read this to my husband and he said pretty funny! I told him what ever works for me.

LJ,

Glad my wife didn't read that pray during my Tx or she may have prayed for the strenght part. That was funny.

Dear LJ, in my experience, being a caregiver meant reaching deep for grit and determination AND gritting my teeth alot! [on many occasions, I also spent time on our deck counting to 100 before going back in the house. Hang in there. Amy in the Ozarks

ok, had our treatment of Carbo on Monday. Yesterday was a night mare. I think he got every side effect there was. We were up all nite. His bp was 75/55 of course wouldnt go to the Er. He is achy, joint pain, throat sore and just plain miserable and feels like a truck hit him. I am almost ready to tell him thats it. no more reatments. I don't know how much more he can take. I thought this treatment would be a bit milder but it wsn't for him. On the postitive side he has had no nausua or vomiting which was horrible on the Cisplastin. I guess I am just ready to be done with this all. Thanks for listening.

Dear LJ, his symptoms sound more like a major flu bug rather than a Carbo reaction to me.[I might get really bombarded for that statement] but I am just relating to John's Carbo\Taxol infusions, which were not very bad. Certainly your hubby has really been through alot and is probably pretty worn down. I hope he will not give up yet. By the way, in an attempt to add a little levity here, I was a "vitals chart" overachiever- took and recorded John's blood pressure and temp.3 times a day for the 1st yr. until his Docs told me to QUIT-. They informed us that his bloodpresure would be usually be below a normal range after radiation or while he was on chemo and we only needed to take it once daily at a routine time unless something was going amiss. A person going through radiation or chemo is supposed to feel bad- caregivers are naturally inclined to fight that [usually with both hands tied behind our backs] so we are in a tough spot. Hoping this gets better for both of you soon. Amy in the Ozarks

Amy, Thanks for your words.
they help to ease my mind a bit. I am only going to take his BP once a day now. I know every litle thing worries me about him. It just breaks my heart to see him so miserable and there is not a darn thing I can do for him. I only hope and pray each day will get better. I keep telling him the worst is behind you but when you feel like this, its hard to believe. Hanging in there. Thanks LJ

What a long week it has been! I think he finally turned the corner late last evening. Feels a bit better. Did 't think this treatment would be so hard on him. He doesn't know if he wants to continue on with the last 2 chemo tratments. I told him it is his call. He is scheduled for a pet scan on July 6. So he just want to wait till then. I am so weary that is the best way to describe how I feel. Hopeing for a good day.

Dear LJ, Good to hear that he had a good evening! I know you are exhausted-watching someone you love suffering is exhausting in itself, not to mention the stain of the anxiety you are feeling.
Can you try to increase your "down or sleep time" by 30 min to an hour longer for the next few weeks- it might make a big diffenence in your energy level. It's gonna be awhile before he feels appreciably better so you both are gonna have to keep fighting this beast. Amy in the Oz

Jam, thanks for the encouragement. Thank goodness I have good friends I can talk to and this forum also. Wouldn't get through this otherwise. I would say he feels 5% better today. I will take that! He still doesn't take anything by mouth. He was before this last chemo so its been 8 days since he has tried anything. That worries me but I am backing off and giving him some space. He just doesn't feel he will get better and I told him he will. It just takes time. He still has so much mucous. Its been 7 wks since our last rad. so I thought for sure this flem stuff would go away. But one thing this forum has taught me is that everyone is different and reacts diffeenty to their treatments. So we're still hanging on...

ok another day... it seems each day is like a week! Hubby seems to be complaining about an ear ache. Only the outside of his ear hurts. I gave him a heating pad you place in the microwave to lay on and it seemed to help for a bit. I don't know. One thing goes away and another creeps up. But.... he did empty the garbage this morning and sit on the patio for 10 min. so that a good thing as he hasn't been outside since his last chemo on the 11th of June. I guess I am trying to look for anything that gives me some encouragemnt. Thanks for listening.

LJ,

Recovery is a slow process and remember each of us can be different and he still has chemo running through his beat up body so just go with his flow. Believe me HE more than YOU wants this nightmare to end and as soon as he feels better he will let you know. I remember waking up one morning and I just could tell something was better. Not jump on my bike better but a slight improvement. I just felt that I had finally walked out of the tunnel and it slowly got better from then on.

We all share your frustration but just hang in there until it happens to him.

Or you can just shoot him right now and be done with it. LOL

Oh and when he does start to feel better remember that he will still have days that he will think he's going backwards but that's normal to. Those backward days diminish as time goes forward.

Thanks, you made me smile. Believe me there are day when I could shoot him! I just feel so darn helpless. Each day feels like a week. I am off for the summer now so the day really goes slow. But I am grateful for each day. I ask if he feels better and he says no, do you feel any worse and he say no. so at least we are keeping steady. I try to explain to him what his body has been through, and this all takes time.He said maybe some month I will start to feel better. o.k. ...Looking forward to tomorrow!

Last nite my husband finally asked for a cup of tea with honey. I was thrilled! This is the first he has asked for anything in 10 days. He drank 1/2 cup but was still in pain. I am trying to talk him into going to see the Dr. on Monday just to check out his throat. Can't wait for the day he will smile and be himself. I miss him and his personality. I know he will change but it sems such a long journey. But we will make it. Just feeling sorry for myself I guess.

I can relate to how he feels Ms LJ. I finished up on 5/31 and still feel like I have been hit by a truck. I have been in the hospital twice, once for airway narrowing and this past week for dehydration. I am having a hard time getting strength back up and it seems like I want to sleep constantly. I have never been one to lay in the bed so I have a question here also, is that normal???

I know that he will bounce out of this soon Ms LJ as will I. Please tell him that he is in my thoughts and prayers.

LJ and Billy,

Both are 100% normal, whatever that is. Your bodies have been taken to the brink of death to save you from the cancer so please rest assure both will be fine but it takes time for your bodies to recover. Getting plenty of rest and getting plenty of water and food will definitely help the body heal.

Dear LJ and Billy, if you need more imput into the "sleeping and tired" issue- there are many posts here to the after effects of radiation and chemo. They don't just go away overnight. Give it time. Amy in Oz

Hi everyone. I have a couple of questions that arose from some of your comments about other people being shocked by your loved ones appearences. My dad will begin treatment this week (6 weeks of induction chemo followed by 6-10 weeks of chemo/radiation). So he should be ending everything by early October at the latest. I'm getting married on December 29th and my mom and I were debating moving the wedding back in order to give my dad a chance to gain some weight and return to a more "normal" looking state. We know he won't actually BE normal, but we just don't know if his weight loss will cause negative reactions or a bad vibe on what should be a happy occasion.
My mom and I are going to do our best to help him put on 10-15 pounds during the chemo, prior to radiation.
Any thought would be appreciated!

I don't know what to tell you Stephanie, I am sorry for what your family has to go through. Some people have an easier time than others. My husband started treatments March 5th and finished on 6/11 he still is very weak and isn't working yet nor eating by mouth much. Sometimes you have to wait a week in between tratments depending on your blood count or just your general health. It happened to us twice and he was in the hospital for 5 days once also. So plann for the unexpected. I am sure as you read through this forum you'll see that everyone responds differetly. I think David said for every week of treament it takes about 1 month to recover and that is sort of a good rule of thumb. They told my husband he shoud be 80% by September. When we started this journey in January. I am sure hoping. Good luck to you all and you will be in our prayers.

I am almost afraid to say we had 2 good days! Yesterday my hubby asked for some soup and ate 1/2 bowl of chicken soup. This is good since he hasn't eaten in 10 days by mouth, he did have a few bites of watermelon. He said he is afraid to think he mite feel a bit better. I told him positive thoughts!!!! Still extrelmy tired. At least I get a smile now and then. Hanging in there!

LJ,

Sounds like he might be right on "schedule" but don't either of you panic if he wakes up feeling just as rotten as before. It is completely normal to experience bad days mixed in with his good days until the bad days slowly disappear.

David you are right. This afternoon he started to feel crummy again. He said "I just don't understand how I could feel good for 2 days and then feel crummy now" I told him it happens. So hopefuly we will see what tomorrow brings. It is so good to read this forum and know you are not alone!

What a long week! I came back from church this morning and my husband shaved his head. Said it was coming out in clumps. I told him he looked kinda sexy! "You got to be kidding me was his response." This last chemo was worse that the last 3. Every side affect that was listed on the paper thay gve you- he got. It is so hard to figure out. Tomorrow will be 3 wks from his lastchemo. We go to the Dr. tomorrow. He sems to have a infection around the site of his peg tube. The Dr.gave us an anitbotic and told us to put neosporin on the surrounding site. Its like one thing ends and another starts. I guess this week I was feeling more sorry for myself. I miss my husband! I miss his laughter his arms around me and his ability to make everything ok. I am chocking back the tears as I write this and can't believe how much emotion I have. I keep thinking to my self- this to shall pass.

Dear LJ, the role of caregiver to the person you love has smacked you square in the face! And the emotional rollercoaster of dealing with all of this has,no doubt,worn you out.[you are not alone].Keep reminding yourself that you have been on this journey with him every step of the way and your fears, worries, sleepless nights, nursing challanges, household duties, etc., etc., have made you stronger AND very tired. I remember, long ago, watching a t.v. special on people who were determined to climb to the top of Mt. Everest, and wondering why the hell anyone would do that! The answer came after my husband's battle with this cancer. You do it because it's there. Hang in, LJ, we are pulling for you both. Amy in the Ozarks

ok back from the Drs. Thanks so much Amy for your words. You will never know how much they are appreciated. And if I haven't said it before I am so sorry for your loss. I bet you were wonderful to your husband.

Everything was a good report bp ok, heart ok ,blood work ok, his throat is still very raw. he even gained 3 lbs. I told the Dr. must be all the chicken broth! We have decided not to have the last 2 chemos. The Dr. was ok with that as he has completed the first regimine that was prescribed and these were just additional.The first words of hope I heard from my husband was "Dr.I am ready to start to get better now"! So... heres to a good day.

We are still having a rough couple of days. Our son came in from Va. for a few days. It was hard to watch his reaction to my husband. First time he has seen him with no hair and lack of enthusiam. Though he did get him to smile a few times. So all and all it was a good visit. hoping he can just turn that corner and have a few good days in a row.

LJ, here's hoping for a couple of good days for both of you. Amy in the Oz

Went to have our pet scan this morning. He vomited this morning before we went and again while taking the test. I don't know what it could be. He is on Augumentin for an infection with his peg tube so I am thinking it could be that medicine. So I decided not to give it to him today and see what happens. He is just so miserable. Sometimes when I read on this forum of people just starting out my heart breaks for them and I can't even respond because I know the road that lies ahead. But we have been to hell and are climbing out of the pits inch by inch.

I couldnt have said it better myself LJ. We have been to the brink of hell and back. And you are right again, inch by inch we will all get out of this hole that we seem to be stuck in.

They gave me some different anti-biotics yesterday because they think I had an allergic reaction to Augmentin. I broke out in hives so they put me on something new. I get up today having a hard time swallowing. I figured it was the "wad" of crap I always feel but they want me to come in and be seen before taking anymore so I guess it off to the ER. Geez, does it ever end???

Billy, hope you are feeling better, what were you on the Augmentin for? Hubby has not vomited since I stoped the meds. Actually he even asked for something to eat last nite. He had 4 bites of mashed potatoes. First he has eaten by mouth in a week! (Thank-you Lord)Seems to be ok so far today. hoping for a good week-end.

Billy: Follow up and let us know how you're doing..by the way...what area of SC are you from? You are in my prayers...Lois in NC

We had a good week-end. This is the first time we have had 2 1/2 good days together! Mucus is finaly subsiding. Sleeping better and ate something small 3 days in a row. So maybe he turned that corner we talk about. I am grateful for any day that is with out pain. Throat is still a bit sore but even that seems to be subsiding. As he dosen't seem to be complaining to much these last two days. Keeping my fingers crossed!

ok ,I can't believe my husband ate 1/2 a meatball and 1/2 cup of pasta with a teaspoon of sauce. I was just thrilled! He said it tasted ok but was so excited he actually ask for it. Thankful for small favors!!!

I remember the feeling, ladyjoe! When my son was at that stage I was absolutely thrilled the first time he actually ate two noodles along with his chicken broth!! It does get better and better. I'm so happy for you both!

Hey yall,

I just noticed that yall wanted me to follow up. I am bad about not paying attention, just ask my wife. I sat in the ER until 3am just fort hem to write me a script for Clyndamycin. The swelling is still there alittle and I am still having trouble swallowing. I just dont get it, I was eating about whatever I wanted and the all of a sudden..bang..my throat seems to not want to let anything pass other than soups and stuff like that. Oh well, I geuss it will subside soon enough.

Im glad to hear that your husband is doing better LJ.

We got our pet scan results back today. The cancer is gone from his nasal areas. Yea!!! They said around his larynx and throat it showed a flare up. They told us not to be concerned as it could be irratation from the rads, inflamation or infection. He is going tomorrow for a scope with his ent. So hoping its nothing. I've read so many on this forum not to get to nervous about the first pet scan. so I am hoping to take your advice. The RO doesn't want to see us for 3 months. So I am taking that as good sign.

BILLY: previously asked by me:
by the way...what area of SC are you from? You are in my prayers...Lois in NC

Went to ENT today for a throat scope. My hubby was a nervous wreck. But everything looked fine. The Dr. said it was inflamation that made the flare up on the pet scan which is very common and everthing else, voice box, larynx was clear. My husband just started to tear up and said "Dr. I really needed to hear some good news" Dr. said "I tip my hat off to you sir for going through such a brutal ordeal. but you made it to the other side"! Thank-you Lord. We came home and my husband asked for 2 soft boiled eggs and some bread. and he ate it all!

What great news, thanks for sharing! I'm glad your husband made it "to the other side" of treatments!

My husband is "in the middle" right now. He's about 1/2 way through and it's just starting to get really rough.

It's so encouraging to read your good news!!! I hope things continue to move in the right direction for you and your hubby!

Hang in there Margaret. The 1/2 way point is tough but you will make it through. This forum is a god-send. Praying for strength and courage for you both. LJ

Thanks for the prayers, LJ. Will prayer for continued healing for you and your hubby too.

Although I was an avid reader of this site since my husband was diagnosed, I still didn't think we'd hit the concrete wall so hard.

After the 2nd week of treatment, my hubby was able to take a short biz trip over the weekend. Now, he is in the middle of week 4 and it is an effort to get him to the hospital daily...or, to keep him awake long enough to get some fluids, calories or pills in him.

I am eager for all of this to be a memory. I am sure you are too.

All the best,

Margaret, my husband hit the wall 3 wks into treatment. It just happens so fast. He hasn't worked in 12 wks but is anxious to slowly start back. Does your hubby have a feeding tube? It really helps. We waited til wk 4 and by then he lost 27 lbs. Hydration is the key! If you would like to e-mail me check out my profile. I know and understand what you are going through. Remember to take care of yourself too. I ended up in the ER with an anxiety attack that I thought mite be a heart attack half way thorough this ordeal. So many emotions to deal with, anger, feeling sorry for my self, worry and just plain being scared stiff. You wonder, will this ever be done with!! LJ

Hi LJ,

Our site won't let Dan have a feeding tube until medically necessary. After reading here, I did inquire about it multiple times before treatment.

Dan did have a spare 20 lbs on him and he's only down 10 so far, so I'm hoping he will make it through without one.

I push fluids and calories 24/7. Although, from what I understand, the 2nd half is much harder than the first. And, the first wasn

What a difference a week makes! Last Friday they wanted us to go the hospital and he wasn't eating. and now... He ate chicken, rice and applesauce today with a glass of sweet tea! This is the first day since the end of March that I actually cooked a meal and we sat at the table together to eat. I had tears in my eyes as I told him sometimes I thought we would never get to this point and he said me too! I encouraged him to try some sweet tea to drink as so many here said it tasted good to them post treatments. He did and he liked it. This is such an emotional roller coaster. And the ride goes on....

WE had a good week-end. Hubby eating a little more each day. In fact we have cut out the 4:30p.m.feeding and are actually sitting down to a dinner. Its just difficlut to decide on what he wants to eat and can eat. But I am willing to try and make anything his heart desires. He even came with me to my Mom's yesterday for dinner. It was haert warming to see him sit at the table. He ate a bit of roast and a whole baked potatoe. Amazing how each day makes such a difference. He is stil very tired but seems to be staying up later each evening.

How encouraging!! Thanks for sharing the good news!!

How's he doing emotionally? My husband is taking a dip in that department but we are finally in week 5 of treatments and I think we are starting to see a light at the end of the part of theetunnel. This hospital stuff is getting old.

All the best,

Margaret, this was the hardest part for me. I told my husband he was in denial!! From the 4wk point to the very last wk. my husband was an emotional wreck. I begged for him to talk to someone or to get some meds for depresion. He said he didn't need anything. I think I cried the whole month of April.It was the beginning of May that I sought out a support group at our Dr. office. Best thing I could of done for myself. It helped me to understand what he was going through and to get a grip on my own emotions. I missed my husband. He wasn't interested in anything or anyone. There was even 1 week when he wouldn't even talk to our kids on the phone.(One is in Va. and the other in Ohio) He was so weak and could of cared less. That was the frightening part. I will say it does get better but we had a few dark weeks. If it wasn't for my parents and my friends and of course this forum I don't think I would have been able to get through this. I noticed on a diffrent post you were asking about making your husband walk and do things. I tried that. Then I just stopped and even with forcing the food. I had to let go for a few weeks. I was worried but he did make it through. Hang in there, your doing a good job with him. WE are here for you. take care.LJ

We seem to be holding our own here. Hubby is eating dinner each nite. Even asked for Kielbasi last nite! I was shocked but I made it for him. He loved it, even added mustard on it. He said next week he would like to try some sourkraut or horsradish with it. It amazes me. His mornings are still a little slow and rough for him to get going. I am wondering if it is the roxiciet he is still on. He has cut down to a dose at 6 and 10 p.m. So hoping he can eventually cut that out too.

Wow, Lady Joe, it seems like everytime I check in on one of your posts, seems keep getting better and better. I'm so encouraged by your latest post.

We're in week 5, and it is hard. Dan took a dip emotionally over the weekend, but his medical team boosted him up on Monday and he is doing much better now on that front.

Although, now he is battling thrush and getting his pain meds right is hard as his pain seems to be a moving target.

Your posts show me there is definitely a glimmer of light at the end of this tunnel. Kielbasa? Sourkraut, Horseradish? You mean there is a life after soft noodles and protein drinks? That is a great thing to know!

I'm glad your hubby is doing well. I hope you keep posting, it really helps me see beyond the day to day of this horrible treatment process.

Margaret, One day at a time. Yesterday was a down day for him, he slept like 5 hrs during the afternoon, he said his face was hurting him and his neck. I told him, you are using muscels in your face and neck you haven't used in almost 12 weeks by chewing and drinking everyday when you are eating dinner. Especially on the rt. side where his ND was. He just looks at me. But it does make sense. This morning he feels better. So we will see what the rest of the week-end brings. I can't even think back to week 5 as April and May were very hard on us. But...you do make it through. The sun comes up tomorrow wether we want it to or not! Thank goodness. Praying for all. LJ

LJ,

Now that we have the weekend "off" and have 23 RT days checked off the calendar, I feel like we are hitting the home stretch.

I've read enough here to know that the road to recovery is filled with it's own thorns. But, when I look at what my husband is consuming now...I get great encouragement out of reading your posts about a return to some normalcy.

I feel bad for my husband in that things still smell good, but nothing tastes or feels good in his mouth. I read him the post you wrote about what your husband was eating and planning to eat...and, it helped us both stay focused on the fact that there is a future beyond this treatment phase.

I heard it takes a long time to get your energy back after radiation. I think I have read here and heard from our CCC that it takes about 1 month for each week of radiation.

I think it will take me a long time to get my energy back too. This has been an exhausting time for me as well. This last week was the worst...thrush added some new dimensions to his pain that really took us off guard. And, both of my kids got sick...nausea, 103 degree fevers.

Were you exhausted at times during this process? Sometimes I feel guilty admitting that because Dan is enduring so much on so many fronts. But I don't ever remember being so worn out.

I think your explanation of pain makes sense. My husband can get some runny scrambled eggs and cream soup down...but, he hasn't "chewed" anything in a long time.

I hope your hubby continues to have more good days than bad. And, I hope you are recovering from this experience as well.

Dear Margaret, Being exhausted is part of the experience. Not only are you a Mom and running the household, you are now a nurse,plus you have the added stress factor of an internalized fear and anxiety about this disease. I'm sure you've heard this over and over, but trying to care of Yourself is also very important[ we all know it's also very hard to do}. Amy in the Ozarks

Dear Margaret,

What a challenge to take care of two children and to be a CG to your husband! I have only completed two weeks of treatment with my husband (and it has gone ok except for a few days) but I have been exhausted a good part of the time. I agree with Amy that being a CG is demanding in terms of time and managing both the expected and the unexpected but when you add in the stress and worry it is often exhausting. Plus, there's no real "endpoint" as completing treatment is one milestone, but then the recovery process with its unpredictable path is next ... I'm new to this board and I am in awe of what I have read on this board about the bravery, compassion, dedication, and persistence of both those with SCC and their CGs. I hope I can do as good a job as so many of you but I know that there will be some days when I wonder what I am doing in this life!

We had a good week-end here. My son came in from Va. so that really cheered my husband up. Hubby changed a kitchen light for me,went to lunch at my moms and even went to Radio Shack with my son!!! So I was Thrilled. Still eating dinner every day. I made pancakes for breakfast this morning before my son left,and he even had one with some OJ. I couldn't believe he could drink the juice with out wincing but he did. Than he asked if I was happy he ate. I said of course. and he said well if I don't eat you make a face. You just can't win. I would think he would be so happy that treatments are over and he is doing so well. A smile now and then would do wonders for me. I told him you should try to see this from my side and he said "What about from me". I just shook my head. I just don't get it sometimes. YOU do every thing possible for their benefit and get no response. It is exhausting being a caregiver. I told him sometimes just one kind word goes a long way. He gives me one of his looks. Lord, give me strength! I told him I am on chapter 30 of my book "If the cancer doesn't kill you , your wife will!" I just want things back how they used to be but I know things are changed. Enough about me rambling on. I am ever so gratefor for his great progres, now if I can just work on his attitude!!!

Here is a well deserved smile for you, LJ:
You have done an amazing job of giving such excellent care to your husband. And you have helped him make great progress, too! Some people just can't express their feelings or appreciation in any great measure. You can't make a person feel or do something they are unable or unwilling to do. A tender look, a smile or a touch can go a very long way, to be sure but until it comes from the one close to you, just know that there are lots of us here sending you virtual smiles and hugs. OR, you could hire a "nurse from hell" to replace you for a week so you can take a vacation and take care of YOU.

Thanks Ann-Marie, I needed that. You made me smile! LJ

Went to the dentist yesterday for my check-up(everything was ok) and was asked how my husband was doing. To make a long story short the dentist asked if I would be interested in speaking at a presentation he is doing for the local high schools in our area on smokeless tabacco. I yes YES in a heartbeat! These young kids have no clue what can happen to them. I told him to make sure he has pictures and uses a lot of graphics with a personal story because unless you put a face to it.The info won't really mean much to the kids. He then asked if my husband would mind sharing his story, I wasn't sure and mentioned it to my husband when we got home and he said he would think about it. I really wish he woud speak to them I think it would do him so much good. But everything in its own time... Keeping everyone in my prayers. LJ

LJ,

Remind your husband that if someone like him had spoken out when he was younger maybe it would have saved him from all both of you just went through.

Your correct those kids don't have a clue and they think their immortal but he he just saves one, that would be worth it to me.

LJ - I think it would be great if both you and your husband could do the presentation, but if he is not ready, I certainly hope that you do it. Have you seen the pics that "Outdoor Texan" has on his website? It's at http://www.outdoortexan.com./mycancer.htm They are very impressive. Kids really are not aware of what could happen to them and a wake up call from someone with direct experience could be a lifesaver for them and their families especially if you have pics or other visual aids relating to the treatment like a Radiation mask, etc.

I do have his radiation mask yet. I was wondering how long to keep it, and now I know what to do with it! Thanks for the great suggestion. I have seen the pic of outdoortexan. Those would be good to use. They are very graphic and make you take a breath! I will do the presentation even if my hubby can't yet.

We are doing better each day. We go to the MO on Monday and hopefully he would like to start back to work parttime on Aug.1st. I think that would be such a milestone for him. I told him I am so weary from all the worry that I want our life to get back to some kind of normal. He said he wants to get on with his life also. So that is a positive note. I am encouragin him to eat more each day. But he says nothing taste like he thinks it will taste. So we just try new things. He wants to try some baked fish tonight for dinner. So we'll see how that goes. He is still tired and sleep 3-4 hours during the day. So hoping he can gain his strength back day by day.

LJ,

Good for you for finding a way to help others! When is the presentation?

Had our MO appt. today. Everything is looking good. We don't have to return til 3 mons. YEA!! Dr. said he can remove his peg anytime he wants. I know hubby is anxious to remove it but I am worried he won't keep hydrated or eat enough. He lost 2 lbs. But Dr. said that is normla when cuting back on the feedings. We are down to 3 cans from 5. So I know this will be a trmemdous boost to him emotionally and mentally. The Dr. shook our hand and told us to get on with our lives!!! Asked about the tiredness and lack of energy and was told it will come back slowly. So for now we are greatful and he looks forward to retuning to work soon and maybe taking in a Steeler Game!!!