I finally feel like we are in the home stretch with my husband. He's down to one more chemo treatment and 10 more RTs. And, as many of you would expect, he's pretty darn miserable.

He's been surviving the treatments, only lost 10 pounds so far without a peg. He HATES but takes his liquid supplements and he is able to eat eggs every morning and he does really well with his fluids...even though everything is a struggle.

And, he is on a ton of pain medication. Which makes him pretty tired.

While there are times when he is "up" and doing well emotionally, there are times when he is really down. This awful treatment process has brought him to tears many times.

Right now, I don't think he sees a life past this...and, he just is in a state of constantly feeling miserable. He wishes he could eat normal food, create normal saliva and swallow without discomfort. He wishes he was out on his bike riding in the summer or out camping with his kids.

The reality of his situation right now is if he is not in treatment at the hosptial, he is in bed.

Emotionally, he dipped last week when he had thrush. Now, that's better but he still has his down moments...they occur most if I leave him...which I do every now and then to get into the office for a couple of hours or to take the kids someplace.

I even started adding an hour walk into my night to try to regain some sense of normalcy in my life and to help me stay on a better, more even keel. (I was finding that I was walking around everywhere crying...the grocery store, the drug store...taking out the garbage...anytime I wasn't with him I was crying.)

Now, I'm doing better and I see the light at the end of the tunnel. But, he is struggling emotionally and the light isn't so clear to him.

Last week when he was at his lowest, I talked to his team about antidepressants. I was a little bummed out to find that they take 2-4 weeks to get into someone's system. And, my husband does NOT want to be on anti depressents.

If I only had to worry about the next 10 treatments, I wouldn't think twice about dropping the topic. But, in reading through posts here, some of the recovery period sounds hard emotionally, mentally and physically.

For those of you who have endured the treatments and the recovery, what are your thoughts regarding anti depressents at this stage in the process? Should I push harder in this area or should I wait it out.

It's a tough call from my perspective...because if it takes 2-4 weeks for the medication to work...he might be doing better in 2-4 weeks..or, emotionally/mentally he might not....

Any thoughts or guidance would be GREATLY appreciated!! I can't get him to go on this site, but I read things to him all the time. And, we are both grateful to all of you!

Margaret - I can so relate to what you are going thru! But there is some good to hang on to in that your husband is still eating the eggs and taking liquid supplements. Tiredness and depression is very common during the treatment stage. There are lots of ups and downs for both the survivor and the caregiver. The tears I saw rolling down my son's cheeks, just broke my heart. But the "up" moments come, too and things do get better. My son slept so much, often I had to wake him to take medication or push some liquids and many times I would go in to his bedroom to see if he was still breathing. (he was) About the anti-depressants - maybe if you talk to the doctor about his reluctance, and if they feel he really needs them, they may be able to give him some new perspective on why it might be a good idea. If your husband is concerned about becoming addicted, there are ways to slowly decrease the anti-depressants when the time is right. It's a lot easier to deal with anything if depression isn't in the mix. I can understand his wanting to get back to riding his bike. One of my son's happiest moments was when he was able to get back on his motorcycle. Margaret - it's good that you are getting out now and then even if it's just to take a walk. During the worst of times for us, I did a lot of crying, too, in the car - at home - late at night. What helped both of us a lot was the guidance we got from OCF. No matter what time you get here, seems like there is always somebody listening. So, keep looking towards the "up" moments and just taking a day (or even 5 minutes) at a time. There really is a light at the end of this dark tunnel so keep looking towards it and let us know what is happening.

Margaret, it is so painful for me to read your post as I so remember those dark days and the feeling of helpleness. I too cried all the time. I remember hearing a jazz song and wondering if my husband would ever hold me in his arms and dance like we used to. I also called his MO when he went in for chemo and asked his nurses to talk to him about depression and they did and he said he was not depressed and did not want to take anything. I was surprised. They told him and me his reaction was normal and this to would pass. I did encourage him to keep taking his pain meds. It seems everything we would ask was normal and you just have to get to the other side. I can say it does get better, sometimes its hard to see the forest for the trees. Hang in there and keep yourself healthy, I walk every nite with a wonderful friend and we both have cried many a time. Sometimes I even needed a glass of wine in the evening for myself! Your husband has a lot going for him as he only lost 10 lbs, no peg tube and can still swallow and eat, even if it is eggs. I know he doesn't want to hear this but one day or 1 hour at a time. My husband still tells me I dont have a clue!!! LJ

Margaret,

If he has 10 more rads to go, then please count on at least 4 more weeks of misery, probably worst than he feels now. Then he will start a slow recovery but he will know when he walks out of that tunnel and that will provide a psychological boost to his mental state.

It is perfectly normal for him to feel doom and gloom now and it won't get better until he finally realizes he's walked out.

I didn't get the mood drugs and I'm not saying he shouldn't as that's a individual thing but he and you will come through this in one piece and your worlds will return to normal but just don't expect too much too soon.

Also my wife confessed to me, long after I was recovering, that she too cried a lot when I was not in sight or hearing distance. I'm glad she didn't tell me sooner or that would have made me feel worse.

Margaret,

David is correct about the next 4, possibly five weeks. I too had my ups and downs. I found ativan to help relieve some of the anxiety. Best of luck, this too will pass.

Rob

Margaret,

please listen to these guys. I was quite lucky re side effects during radiation. Right now (I week after end of Tx), I wished I felt as I did 2 weeks earlier.
I would suggest that it is normal for a patient to feel frustrated and sad etc during the Tx (would anything else be normal???). That does not mean that antidepressants are bad and if they help, great. On the other hand they are not candy either and the medical profession is in my opinion quite nonchalant in prescribing them. (OK I am off my soap box now).


M

I would put my money on 6 weeks before you even notice the slightest change and even then it will be measured in 3 week increments for a long time. Fatigue and depression are commonly known side effects as many others have mentioned. The narcotics probably don't help much in that area but he will probably need to increase his dose rates - even after treatment is over. the radiation side effects keep on going for quite a while post Tx. I took anti-anxiety meds and had a script for Paxil although I never took them - had enough drugs. The treatment really kicks your ass though and anti-depressants may help him now.

Thanks all for the responses!! It means a lot to me to hear from people who have been there/done that.

Here's what I do understand...cumulatively, the radiation and chemo continues to do there thing post treatment for a couple of weeks. And, that just sucks because when you think you should start to feel better you are actually feeling worse.

But, isn't there some benefit to not hauling your weary body to and from the hospital every day? It takes us anywhere from 3-4 hours to get to/fr the hospital and get treatment on a non-chemo day. So, I was kind of hoping the pile on of icky symptoms post treament would be offset by taking away the stress of going to the hospital daily. And, I was hoping that mentally/emotionally that would give him a boost.

Am I completley off base?

Markus, sorry to hear you are feeling worse now than before...If I am remembering a previous post of yours correctly, didn't you golf 27 holes right after treatment? For the record, I put you in my book as super human after I read that. I hope you are able to golf again soon!

Anne Marie and LadyJoe...thanks for the support, you two are very encouraging and helpful to me I always enjoy reading your posts. LJ, I hope things continue to improve and I was happy to hear your hubby will be able to start work again soon!

Gary, Robroaster, David...It's really helpful to get that patient perspective. I'm watching my husband go through this and yet I don't think I have a fraction of a clue as to how much discomfort he is in.

Thank you everyone!

As usual I can go to any topic and find answers to the same symptoms my mom and I are facing.
I find this home amazing to be a part of!
Thanks everyone!!
Donna

Margaret,
not having to drive to get radiation was nice, but at the same time it did provide a structure around which the day had to unfold.
You are correct the simple fact that because the Tx is over you want to feel better. There is no doubt about that. That works for a very short time and then the reality sets in and therein is the danger. I think that this is why so many people are cautioning you ... be prepared to feel worse before it gets better.

Re Golf... no that was not me, instead I went to work (physically not very demanding). For the last week, I have been interacting with my students via email, but I will try to go in at part time (if possible) next week and take it from there. Is there anything your husband could (and would want to) do as far as hobbies or work etc are concerned (plan a vacation or remodeling, organize the labtop, mp3 library, etc).

It helps to be prepared for the worst, that way any surprise will be a positive one. Also, every day is one day closer to the day when you cross the finish line, even if there are additional hurdles to overcome.

Best wishes to both of you.

M

Hi Margaret,

When I was finally done, I came home & slept for almost a month. I would get up just for a few hours a day, then back to bed. My husband was real worried during that time. Slowly my days would improve I would be up longer and longer.

I started really seeing a difference around 3 & 4 months. I could start eating a few small things. I also had thrush start a few times which can make your life miserable!! So keep eye out for that and get meds to have on hand for it. You can get from Dr. or Dentist.

Happy for your husband that you are almost done!! It is a great feeling,

Take care
Diane

Margaret,

Yes it is a relief not to have to make that daily commute but at the same time I felt medically alone since I was not able to have direct daily access to any of my docs. I even had to go to the ER appx 2 weeks after my Tx ended which I may have avoided if I was being seen every day. Besides I was just to darn miserable to feel any relief about anything for the 2 to 3 weeks post Tx.

Hi Margaret,

David is 5 weeks post as of yesterday and he is still very tired. Pain is more manageable but he is still exhausted. The doctors told us 2-4 weeks the radiation continues to work and that is true because 2 weeks ago when we where in for follo-up the tumor on the Lymph node which has been our marker was still over 4 CM (started at 6.3 CM) this week they felt it was about 2.5 CM great change.

He has begun to eat some food a couple times....Soup and jello this week. They gave him "Kesslers Cocktail which numbed his throat and allowed him to get past the pain to eat. He is awake more than 2 weeks ago.

Up and Down it is...Wednesday was great day he was up we went for very short walk. He had success with soup. But Thursday he was so exhausted. Yesterday a little better but today not feeling very good.

I am actually taking a break from cleaning to look up Thrush and mouth infections here. He has a huge patch today on roof of his mouth that looks like a scabby area almost..and appears to be pussy almost hard to tell with the mucus.

Don't be discouraged.. Everyday really is another day. Small improvements and progress is seen everyday in his face and attitude...Even when he is sleeping and how much better his sleep is.

May he have a great day and you also!!!!

I make sure I use my miracle mouthwash "religiously" and I only have had one little spot of thrush.

If you look up depression in the dictionary you will see my picture.

They put me on ativan last week and it did a 180 turnaround on my depression. They changed it to zoloft today. I too have read about this 2-3 week wait to kick in period, but my reaction was immediate.I take 2 pills at 8 hour intervals and can take 1 more every three hours if needed.

It relaxes me to point of elation...(almost)
and I sleep much better now. Now I "wake up" instead of being awoken by pain, and negative thoughts.

Ask the doctor to try it,it may work for you as well.
Petey

Dan can't tolerate the miracle mouthwash. I wish he'd use it. But, have given up that hope.

He's still struggling with depression at times, but overall he's doing better. He just finished treatment yesterday.

Petey, I'm glad you are doing well with the zoloft. I didn't think that worked so quickly, so good to know that there are exceptions. And, I'm happy it is working so well for you!

Margaret,
if he tries the magic mouthwash again make sure that he doesn't swallow it. It should be used as a "swish & spit". If it gets swallowed it numbs the gag reflex, which prevents aspiration into the lungs, and that is a very bad thing.

Regarding miracle vs. magic mouthwash

I believe they are different, and are made up to certain specifications.

One nurse said to spit out and one said to swallow.

When you swallow it allows it to get to bacteria in the throat.

But if it contains numbing agents it could be bad as Gary mentions. I have no clue, but I am fine when I swallow it. This pertains to the newest script given after radiation TX were dropped. Maybe they withdrew the numbing agent that prevents the gagging reflex from working.

Follow this link about it. My first script had all the "ingredients and amounts like a baking recipe" (exact amounts).

Please read this link below. Thanks for all the help and support.

http://www.medkb.com/uwe/Forum.aspx/pharmacy/1374/Question-regarding-miracle-mouthwash

"But, isn't there some benefit to not hauling your weary body to and from the hospital every day? It takes us anywhere from 3-4 hours to get to/fr the hospital and get treatment on a non-chemo day." Yes and no. I also had a 60 mile RT in heavy Bay Area traffic every day so it was about a 3 hour trip for me as well. I slept mostly and didn't miss that part of it.

Psychologically though, the end of Tx can be a lttle frightening. There is actually some comfort in fighting the battle proactively. It can be scary when you know that there are no more protons or ct actively killing the cancer.

I haven't heard of magic (or pink) mouthwash not containing numbing agents, typically they have liquid morphine and lidocaine with benedryl, Maloox or mannitol. These things are locally compounded so there are variations. Like Petey mentioned I also had conflicting advice from onco nurses. I would pop a couple of morphine tablets prior to eating or drinking and that worked pretty well for me, occasionally when it was particularky bad I used the swish & spit also.

Margaret -
I read your post and just want to give you a hug. The months from diagnosis to end of radiation were tough - but the months after the radiation treatments stopped were harder. I nearly lost Kenny twice -- once to surgical complications, the other to depression (suicide).

Kenny grew up thinking that men should hide their feelings and just 'work through it'. And the depression hit him like a ton of bricks.

Kenny is the most 'anti-drug' guy you would ever want to know. Hates even taking an aspirin.
But he now takes Effexor once a day and swears it saved his life.

I was the one that told the MO to prescribe Kenny anti-depressants. The first ones (Paxil) really did not work. After talking with our family doc, Kenny was switched to a different type of anti-depressant and it certainly helped.

I will echo what Gary states about ending treatments. At least by going to the RO we felt we were 'fighting' the cancer. We were doing something tangible to battle cancer.

Once we reached this point we both thought -- "ok, we made it". Boy were we wrong. Kenny was either sleeping of dealing with the terrible mucous problems post radiation. Actually the sleep helped him a lot. Think about it -- his body has to completely heal and re-build his throat. That takes rest and nutrition.

A final note -- keep yourself healthy (both mentally and physically). My depression wasn't something I was ready to deal with - but I learned that I had to keep going for Kenny. Make sure you take care of yourself!

Carol

Just wanted to add something; haven't posted (since I logged on maybe 3-4 weeks ago). My husband went back into the ER 2 wks post tx for almost a week (he was so weak/sick, never smoked, very light drinker). Strong, healthy guy b4 it started and it almost kicked his buttae (and he was SO depressed, just thought he could kick this somewhat easily). I didn't know what to do and everything I tried seemed like it made it worse. We are now 7 mths post and he is just seeing the light (and it is a huge difference even from last month). I also thank DavidCPA for being a little bit ahead of us in the treatment and letting me (us) know that things could even still get better at that point. I think we thought we were as good as we were going to get and that wasn't the case; it's important for people to know that the healing continues, on a different pace for everyone, but it can/does keep getting better. I give thanks to this website for showing/giving me (us)hope.

My thoughts and prayers are with you.