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post treatment lethergy

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

My husband is 10 days past chemo and radiation treatment for stage 4a base of tongue squamous cell carcinoma. They tell us that we have had it easy symptom-wise, although it has felt very rough going through it all.

I can't believe I didn't find this board till after he had finished treatment. I could have sure used a place to gather input earlier. But here I am today.

He was really tired before treatment ended, but his exhaustion has gotten so much worse now that it is hard for him to stay awake for an hour. He dozes even while in the middle of a conversation with me. I would guess 20-30 nappets with some additional long naps a day.

My question for today is how do I support him by allowing him to sleep as much as he wants, while simultaneously motivating him to get up and move around as per the doctor's orders. At our last appointment, the doc said enough laying around in bed. It is time to join the living again, and it will help him to feel better again sooner. Laying in bed all day long zaps your energy. He had an x-ray last week that showed a HUGE gas bubble in his stomach that is the result of too little ambulation.

As expected so soon after treatment he is still in pain--2 pain patches are on him right now, but that makes it pretty tolerable. He isn't swallowing much food yet, but through his PEG tube he is getting 3 liters of water and 5-6 cans of liquid nutrition or the high cal shakes that I concoct each day.

Before treatment ended he was responsive and somewhat conversational and grateful for all I am doing to help him feel better and hold our lives together. Now he barely talks to me, issues orders when he does, and doesn't seem to want me nearby at all. He just wants to sleep.

He has seen a psychiatrist who prescribed an anti-depressant to help him with depressed feelings, but I swear it seems worse now than it has been before.

So I am feeling disliked and excluded from him right now. And I am frustrated by his lack of motivation to help himself move out of this sleepy ditch. He really wants to get past this energy-less feeling and he wants to eat again, but he doesn't have the will forces to do anything to help himself toward those goals. If it is slightly unpleasant, he crawls back in bed.

I know I should be cutting him a break, and I have been a great advocate up to now, but I am not sure what to do next. I don't want to harp on him to wake up and brush his teeth or move away from the tv etc. He doesn't want to hear it either.

I guess I am at the point where I am feeling angry and resentful to the cancer about the life we no longer have, and I can't yet see the life we have yet ahead. This place feels like purgatory. Make no mistake, I love my husband so very much and I am not angry at him, just the place I find myself today. I know it won't last forever--we will find a new normal. I just don't want that to look like my grandfather sitting on the porch enjoying loafing while everything else is done by me for the rest of my life. This was my grandmother's reality. My husband is only 49 and I am 45. We have years of life ahead to live.

I have already contacted his psychiatrist to ask for a different med that makes him less sleepy. And I am in regular contact with his radiation oncologist to keep him updated as to how he is doing.

Someone will tell me to have a good support system. This I have, with so many friends who are positive and concerned and offering help. And someone will tell me to find time to do things for myself, but if I leave for 2 hours, 4 hours, or 8 hours, he sleeps and doesn't eat for that time frame, so right now, that is not a possibility. I work each morning, so he does have time away from me (and vise versa).

I don't know what kind of advice to hope for. I just needed a place to voice my frustration and pain.

Thanks.
Karen

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

Karen,

I can't imagine what you are going through since I was, like your husband, the one with cancer. I do know that I leaned so hard on my wife it is amazing she stuck with me! I would try to put a 'smile' on for everyone else, and gave her the brunt of my frustration and fear.

As for sleeping, I went through a similar time after my treatments. I wanted to hide from the world. It is a strange feeling. I did go to a Cancer support group (The Wellness Community) and that did help. It is hard not to be 'selfish' when you have cancer. Too much time saying 'why me'.

I also took anti-depressants, and they helped me. It is hard to explain how our brain works when we go into survival mode. I pray that your husband, like me, gets through it. I am 5+ years out of surgery, chemo, and radiation for squamous cell cancer (unknown primary). I'm still here. While I still have bad days (my darn head, not cancer), life is great.

You have a lot of people pulling for you.

George

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

George,

I think that is one of the things I miss most. I have always been the strong one in my family since I was 21 when my mom died. I guess I have also been the strong one in my marriage too, but before it seemed somewhat shared. I had Kevin to lean on when I was needing a respite. But now he isn't able to do that for me. I want my husband to take care of me and comfort me too. Right now he can't do that. Hasn't been able to do that since diagnosis this past June. During this time we listed and sold our house, moved to an apartment, bought an old house that needs renovation, sold my childhood home, in addition to 4 surgeries and cancer treatment. My plate has been beyond full. And I just wish someone would wrap me up and say there, there now, I will take this hard stuff off your shoulders so you can get some sleep. I am feeling so worn down. It is hard to be the cheerleader all the time. And when he fades, it becomes harder. Thanks for letting me emote.
K

Skiffin16's picture
Skiffin16
Posts: 8097
Joined: Sep 2009

Ten days out is pretty soon, hard to beleive that your doctor is saying enough rest.....he's actually going through his roughest time right now.....For me the last two weeks or concurrent radiation and chemo and the next two to three weeks were the very worse of all my treatments. I was very tired and super grouchy. Mywife and I laugh now because I was giving her a hard time for making too much noise getting a fork out of the silverware drawer..LOL.

It took a good three plus weeks before I started feeling a little better,always having something by way of swelling, inflamation, aches or pains in my throat, not to mention just feeling like crap.

I couldn't drink or eat anything other than water and ensure plus, and that was only after taking pain solutions first to numb my throat.

I'm sure given some time your husband will be up and feeling better and be there again for you both emotionally and physically....

Try to get out with a friend or some you time, just to get away a little. Do some special thing for you like your hair or a pedicure with a friend....hopefully you guys have someone that can spend time with your husband during these times if needed.

Take Care,
John

ratface's picture
ratface
Posts: 1252
Joined: Aug 2009

I'm a year older than your husband and 3 weeks post treatment. I was very depressed not to have somewhere to go every day after treatment ended. I also wasn't that confident in my doctors which made it worse. It's tough to be cared for everyday by the doctors and nurses and then just thrown out and we'll see you in two weeks? I would think the depression medicine is not working properly and possibly making him very sleepy. Perhaps something milder might work. I still take naps because of the anemic state I'm in. Your husband is also suffering from low red blood counts which will make him very tired. If you live in a nice weather area perhaps you might start with short walks together? As a comparison I plan on doing several hours of yard work today and will probably take a couple hours nap afterwards. Sleeping all day is not healthy and excessive. stay on top of it.

SASH's picture
SASH
Posts: 283
Joined: Apr 2006

You might want to have your husband checked to make sure his thyroid is working properly. Mine was damaged from the radiation and at times I would feel like I was going to fall asleep at any second and had to go lay down. Once this was diagnosed through a blood test, just taking a medicine in the morning to supplement the thyroid really solved the problem.

SmithMama2's picture
SmithMama2
Posts: 48
Joined: Oct 2009

I have just sent a message to his doctor asking about both possibilities, and hopefully this could be easily solved. I really appreciate the time you have taken to share a response.

I worry that he isn't doing his oral care while he is in this lethargic place. Hey I worry all the time these days...

Karen

jeb54321
Posts: 22
Joined: Sep 2009

Its been 26 days since my last radiation, and 33 days since my last chemo, and I am EXHAUSTED constantly. My wife didn't know how to take the A/C out of the window, so I supervised, showing her the screws, etc., while SHE did the real work, then I slept for the next four hours. This is VERY typical of this time I've been told because the treatment is cumulative. It's built up to this point for many weeks, and radiation doesn't just *stop*. The effects are still going on, and the body is still reacting. I'm told several weeks after is the "hump".

I am "lucky" in a sense because I can't take thin liquids in my Gtube for some reason, so I can't get enough hydration. As a result, even though the primary treatment is over, I'm still seeing my doctor twice a week (2.5, since I see the radiologist every other week) to get a saline IV drip to "top off" my fluids.

As a result, they have been taking blood still, and know that I'm anemic, which makes me tired, they know I'm still taking a lot of anti-depressants, which makes me tired, I'm still on the patch AND breakthrough meds for pain, which makes me tired, and I'm not sleeping well when I am supposed to, so the cat naps are actually essential.

I also get a LOT of feedback from my doctors, and every time I start pushing, they start telling me to slow down. They tell me that I have responded to treatment faster than almost anyone they've seen, and that the healing process is likewise moving ahead very fast (I was told last week that I am "over the hump", whatever that means) but they also keep telling me to let time do its healing part, and that I'm still a LONG way from being my good old active self. Its almost contradictory, but they have made it clear that the process is a slow one, and they have no interest in rushing things.

I am not sure from your note, but I would keep close contact with the doctors, and would not be in a hurry. If my experience is at all similar, there is still a lot of sleep ahead. I have walked to the corner for my son's school bus a few times, and we even went to a WWII re-enactment for several hours, but those were GOOD days, and I have plenty more that I have blissfully dozed the day away.

I know it feels like its over, but you are still in the thick of it as I understand from my doctors, and this is PRIME TIME for depression.

Oh and, by the way, I went through that grumpiness thing too. Its eerie how clockwork this recovery stuff is, but although my doctor continues to emphasize exercise as well, I think we've finally reached an understanding that they mean I should be out of my chair a few times a day, not practicing for a marathon. Oddly, the more I ask about how to "speed up", the more they encourage me to "slow down". I think you just have a slight miscommunication, as they don't want complete sedentary, nor excessive activity either.

The good news, is you really are probably near "the hump". My saint of a wife (not unlike you) has said she's seen a lot more smiles lately, and is taking pride in those small victories.

You guys have been through a lot, but you still have a ways to go.

Hang in there, and our thoughts are with you.

Jim

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Does his routine blood work include TSH (Thyroid)? If it is above 4.5 or so he may be Hypothyroid and need to take Levothyroxin or Synthroid or similar. Radiation and of course Chemo can and do cause degradation of Thyroid production.

I felt very much like you describe of his symptoms. They checked my TSH again and it was about 7.8. Started Synthroid and in a week my similar symptoms of lethargy, depression, lack of energy, etc., all were considerably improved. A month later on the drug and I was a new man.

Probably not his situation, bet they already monitor that. BUT, it never hurts to look closely at the "small stuff".

Just a thought......................JK

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

Jeb54321 is spot on!!

I am over two years out and I wish that I would have heeded the words of Jeb.

My doctors told me to take it slow. Every time that I tried to do what I thought I could do... I would over do it. It always brought on a set back. Take your time. Raise your strength slowly and surely. Stay hydrated!!!!! Can't say that enough. I lost 160 pounds and could not swallow for almost 18 months. I had daily hydration bags for two months that steadily retreated after treatment ended. The last week I only had one. In my opinion a year is a short time. I wish you luck!!

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