My husband Stephen got good news on his scan results. Activity in the right lower tongue base which is probably due to scar tissue. Scans again in 6 months - which I thought would be three next time and then on to six months. But regardless of the wonderful news my husband is not doing well at all. He is three months out from tx, and I know it is a SLOW recovery, but from what I've read here he should be doing much better than he is. Please keep in mind I'm not complaining but just confused and yes maybe getting a bit impatient that he is not pushing himself. He is in bed all day most days and I need to tell him to shower or he doesn;t. He does not do anythin with our four year old son and six year old daughter. I know hes been thru hell, I witnessed every horrific moment of it. I guess I feel like as a caretaker I've done all I can do and now he needs to pitch in. I know everyone is probably thinking depression which I think as well, who wouldn't be depressed. He still can't eat or barely drink. He has a dialation scheduled for August 10th so I pray it changes that. He is on an antipressant and has been through out treatment, maybe not the right one...He says he doesn't think he is depressed but that he just has no energy. I asked him the other night if he honestly felt like he was pushing himself at all and he said no. I guess my queation is do I need to push at this point. His family really needs him. He has a wealth of family and friends and has had temendous sdupport thru it all. No one could have done more for us thru this.
I hope I'm not sounding heartless, I love my husband but I can't stand to watch him lay in that bed day after day not even attempting to get up and come sit on the couch with his family. He complains of shoulder aches and headaches which I attribute to being bed ridden. Does this sound familiar to anyone...Any advice?

Kerry,

Honestly, three months out of treatment, although I was not in bed all day, I was still very very sick from radiation and chemo. I had thought I'd be back at work full time by then (the fall semester started 2 and 1/2 months after I finished rad) and after talking with my ENT, I realized I wouldn't be ready for full time until the Spring. I was also still in a lot of pain, still using prescription pain meds, with all the attendant complications (constipation and some nausea) and still needing LOTS of rest. I was as weak as I've ever been. Walking up one longish flight of stairs carrying a bag of school stuff ( a couple of textbooks and notebooks) totally exhausted me--to the point where I ahd to sit down at the top!

I will say that I did push myself to get out of bed, bathe and get dressed every day and do at least something productive. I didn't want to get any weaker than I was and staying in bed all day leads to that. But I also did sleep a lot.

I am one of the folks hre that probably ahd a harder recovery and your husband may be also--it affects us all differently.

I would keep encouraging him to get out of bed, take a shower and get dressed but maybe other than that go easy on him. It's hard to even imagine how discouraging it can be to still feel so bad 3 months after chemo and rad are over. You feel like you're never going to have any energy back and having everyone else act as though you should have more energy could add to the depressingness of it.

Nelie

Hi Kerry,

Yes, your husband has been through hell. I went through the same hell he did, maybe even a little more as my surgery was extensive. I tell you this so that you realize I know each and every feeling he's having. Three months after treatment I still couldn't eat, although I could drink water. I relied solely on my stomach tube. Did I lie in bed all day? Of course I didn't. I had a family and responsibilities and life doesn't stop because of cancer unless we ALLOW it to. My advice to you...........forget he had cancer and treat him like your husband who is hiding away from the world, feeling sorry for himself. Tell him it's time to start thinking outside of himself and focusing on his children and family again. Sounds like everyone is using the kid golves with him, time to take them off and treat him like a capable man again. That's what he is by the way, a very capable man that is still weak from treatment, but still a man. No need to lie in bed all day. Pick a fight with him, let him get his anger up, do whatever it takes. Just get him on his feet. You sound like a great caregiver, but your role isn't to enable his need to stay in bed. Right now, your role is to get his butt out of the bed. If this were my husband, I would try appealing to his male need for control.............tell him you bounced a few checks! Sorry, just trying to put some humor into it. This must be tough for you. Get him out of the bed, it will make a huge change in day to day life for both of you.
Minnie

Kerry.

So glad to hear from you. I have been waiting since your last post to hear the news. Happy to know all is looking good.

I too was out of energy at 3 months and was concerned that something was wrong. The best I could do was get up take shower. I was in bed most of the time, but would get up and move around and even go out side for a short walk. (VERY SHORT)

I also learned at that time my Thyroid was not working and it added to the problem! You may want to have that checked out. I am just now starting to feel human again at 6 mo.

My husband always thought I would be just fine after treatment. (wishful thinking) He was wrong. It takes time to heal from all of this. Even now I have to remind him that I am still healing. He just wants the OLD ME back. I am not sure if my old self will ever be back? We will see! He would try and push me to do things I could not do. I would get very upset with him for it. Encourage YES, Push NO.

I too get head aches, more in the sinus area on the left side. I found if I got up and moved around more it helped. I would get up and down at least 3 times a day. It would help with the stiffness in the shoulder and neck. I would try and stay out of bed for 2 hrs. at a time. Sometimes it was less.

Also make sure he is not loosing any weight. That too will make him weak. Hang in there, I know it is hard.

Ok, take care
Diane

I don't know what the answer is, but I know recovery is painfully slow. I'm just over 2 months out from radiation. Still not eating solid food, living on Ensure (barf!) and some weight gain stuff I got at the health food store. Nutrition & calories are important. I'm able to (barely) hold my weight with +-1600 calories per day. If I get less, I feel much worse. Energy level is very low, and depression is a real problem.

I actually ate an ice cream bar yesterday, almost the whole thing. I'm considering that a turning point and will look for improvement every day even if barely perceptible.

What I'm getting from those who've gone before me is that recovery takes a looonnng time, and I need to be patient.

Kerry,
When I finished my radiation treatments at labor day the doctors predicted that I would be fine by January. That proved not to be the case. Following a short case of depression I did begin taking a two mile walk every day and running a few errands or stopping by the office and those little things really helped a lot. However I had no interest in going to the park and putting golf balls, seeing movies, or doing much more than staying home, napping, and reading.

Everyone reacts differently to this stuff. I for one, would not judge anyone who has gone through this life-changing experience. I was slow to recover, but in time I was fortunate to recover better than most. Your husband probably has not realized yet that there is hope, and that life will likely improve dramatically. I would counsel patience.

Best of luck,
Danny G.

Kerry,

As you can tell from the responses so far, there is a pretty wide range of post-treatment reactions and recovery times. While I can't claim to have any first-hand experience with depression, some of your husband's behavior does seem to suggest this might be an ongoing issue, and maybe his doctors should be re-examining his medication.

I thought it was telling that when you asked him whether he was pushing himself, he said no. At this stage (3 months out and getting good test results so far), I would think he SHOULD try to push himself somewhat to see what he can tolerate and to try to get some strength back. My treatment included XRT x39 after surgery (but no chemo, which I'm sure added to your husband's misery). I worked at least part-time all the way through radiation (largely because I was in a job situation where I felt I had almost no choice) and then gradually started getting back to full time within a couple of months after the end of treatment. While I was still feeling weak, and it took quite awhile to regain the weight I had lost, I was able to keep at least some of my "normal" routine, which I thought was helpful to my overall state of mind at the time.

Cathy

Hi Kerry,
I think you need to kick away the 'he should be doing..' concept based on what you read on this forum.Try not to compare your husband with others because every individual has different reactions towards the treatment, both physically and mentally. We can't judge whether such behavior is normal or not. I was given a clear scan report 2 months after treatment and everyone was so happy to receive the news. People around including my husband wasn't aware that the side effects were still working in my body. I was still in physical pain and my energy had dropped to a level that after finishing my breakfast, I wanted to stay in my bed again. My husband had no time to 'push' me because he was busy at work and so my sisters-in-law (altogether 4) took turns to visit me and talked to me, told me what I should do, took me out for a walk...etc. The more they pushed me to do something, the more resistant I became. The root of the problem was I missed my job so much and I thought I could never be my old self. I missed my old 'normal' and all my relatives and friends had never gone through my sufferings and could not accept my 'strange' behavior. I ended up with a hospital stay in the psychiatric ward for a month. In six months' time after treatment, I was able to take up my full time job again.
I don't have good advice on how you can help your husband but just want to share with you my past experience which was quite similar to your husband's, to some extent. I am sure other more knowledgeable members here can offer you workable advice.

Karen

Hi, Kerry- well here is more to read: I saw that Stephen had 42 rad tx,s. My husband had 30 and slept most of the time for 3 months post rad. We also had a hell of a time getting enough nutrition in him because he felt so bad. His only real pain med. was Hydrocodone with some aspirin or Tylenol .Is Stephen still taking something for pain? My husband has always been tough about pain. He worked in construction and cabinet making most of his adult life- not a place for wimps- but the cancer surgeries and rad. put him down. We are now on our second round with this and the chemo is also wiping him out. It sounds to me that you-understandably- want Stephen back in the swing of things- but he plainly is not able to do that yet. You are gonna need to be the strong one for a while yet. Those of us who are caregivers to our loved ones "hear you" and send you strenght to get your family through this. Amy

Kerry,
listen carefully to what Amy and Karen have to say. The rule of thumb is a month of recovery for each week of radiation. Like others have said, we all respond differently to treatment, but anyone who "defies" the previous rule are rare exceptions indeed. It is also a multidimensional issue depending, as others have also mentioned that narcotics and nutrition are also playing a role here. Cancer fatigue is a well known side effect of treatment, particularly radiation, the key reason why so many of us are granted SSDI payments.

It takes a lot of patience at this early stage of recovery. His body instinctively knows what is best for it right now. He has just had the living crap beat out of it. It took me 2 years to be completely functional (well at least to the "new normal" of about 95-98%). I was in excellant health prior to Tx and Dx.

I am a cabinet makers son.