My husband's RT (IMRT, no chemo) will end in 1.5 weeks (9/6). I travel for my job (sometimes gone 3-4 nights a week) so I've taken a 4 week FMLA to get him through these final weeks of tx plus about 2 weeks thereafter.

Can anyone help me to know if it's enough?

I keep reading on the boards things that make me think his symptoms may get "worse" for a few weeks after treatment. Is that possible? When RT is over, will his symptoms worsen? Or will we start to see small improvements?

I know no one has a crystal ball, but if I'm going to extend my leave I need to let my boss know quickly (and it's my first year on the job and I'm worried about the impact of this request). We need this income, not to mention health insurance - I feel like I'm walking on a tightrope, I feel like I'm going to lose my mind - but that's for another topic.

Would appreciate any advice on progress (ability to live indepenently) during the immediate weeks following treatment.

Hi Debra,

We all respond diferently. I was able to getalong fine a few weeks after treatment even though I could not eat. How is he handling things now and how does he feel about being on his own. There are part and full time care-givers available that your insurance should cover. You might also try Caregiversa for Seniors. I'm not sure of your husbands age, but tehy may be able to provide some support.

Steve

Debra,
I personally went downhill for several weeks post Tx but I am sure that the chemo had a lot to do with it. My wife was still able to do things and not provide 24/7 supportive care. some strategic planning and a little outside help will probably get you through it. I mostly slept a lot anyway. Like managing children, you have to make sure he gets his meds, fluid and nutritional intake. The most dangerous part is from this point to about several weeks post Tx and the narcotics he is on for pain have a lot to do with this (not to mention cancer fatique, dehydration, malnutrition and other issues). He could be unstable on his feet and may need help getting up or getting to the bathroom. Showers are tricky too. I took mine sitting down and planned them for the time of day that I had the most energy. Remove hazards where, if he falls, he won't injure himself. As Steve said you may qualify for IHSS (in home supportive services). Contact your county welfare department. Church groups are also really good at providing respite care if friends and family are not nearby. It really helps to have a network. This is a hard thing to do by yourself and it will take its toll on you. Treat yourself to some away time.

Hi Debra -

The weeks after radiation treatment where absolutely the worst for my husband, Kenny. The radiation treatments 'accumulate' and continue to build up & do their 'work' even after the actual treatments are over.

Also -- it was so very difficult for me as well. When we were going to treatments twice a day, I really felt like we were 'doing something' to beat this cancer. Then suddenly we didn't have the daily visits and we were at home, alone and Kenny simply felt worse and worse. I really struggled with this. It helped me to deal with his cancer by having him seen every day at the doctor's office, having nurse check him, etc. I didn't realize I would feel like this when I was dragging him to radiation twice a day - boy was I surprised!

Here's a couple of suggestions:

1. Talk to the staff at your RO office -- they probably have some resources that could help. Kenny slept 20+ hours a day after treatments, but managing his meds and feedings was critical.

2. Talk to your boss and see if you can work a more flexible schedule -- working a couple of hours, then taking a long/early lunch, working a couple more hours, etc. Or making up time on the weekends, etc. This worked for me. It gave me a break from constantly watching Kenny breath and also provided me with a few hours of 'normal'.

I was fortunate enough to have support from our families and blessed with a phenomenal boss that has the attitude that family always comes first. We need my paycheck & health insurance. And you DO NOT want to lose your health insurance right now.

3. Ask the docs to prescribe home health nursing. This was a terrific help for us. First -- it was from doctors orders, so insurance paid. Plus, it relieved some of my anxiety because RNs would come by the house on a schedule and check on Kenny. Just being able to talk to a nurse face to face about any daily issues was a blessing.

4. Take care of yourself. If you have a melt-down, you will not be much help to your husband. Call YOUR doctor (if you haven't already) and tell her what's going on. After 12 months of this I still take a very mild anti-depressant that has helped me tremendously. Some people are funny about not wanting to take anti-depressants, but I am here to tell you they saved Kenny's life and my sanity.

5. Visit here often. This support group, this network of huge hearts and wise words has helped me and Kenny so very much. During some very, very dark days I was able to post here. Or just read other's comments.

Hang in there Debra. Yes, it's probably going to get worse, much worse, before it gets better. But it DOES get better and you WILL get through it.

Sending you positive thoughts & light --
Carol

Debra,

I am almost 3 weeks post finishing treatment and I have worked for the last two weeks everyday for half a day. I have not found that I got worse after the treatment, but as others have said, everyone responds differently. I also had family here for the last 6 weeks to help out with our 5 month old and to help with housework. Do you have any family/friends who could move-in for awhile?

Hi, Debra. You got lots of good advice above. I have to add that John's worst time was after rad ended and lasted about 5 weeks- all he wanted to do was sleep. Figure out what kind of feeding schedule he wants to be on and a reliable way to track the calories and liquids if you are not at home. How far away are you at work? The suggestion about coming home in the middle of the day and going back is a good one if it is doable. Getting some outside help is also good. My husband refused to have a home health nurse come in- and the funny thing was that each time I threatened, he seemed to rally and try to do more things for himself! [Men are such interesting creatures]It's gonna be tough going for awhile. Amy

Hi Debra,

I am not trying to scare but my wife's health declines for 3 to 4 months adfter the end of radiation and chemo. What contributed to this decline, I belive was in part not adequate nutrition. She was on a peg tube for about 9 months and she was not getting enough calorie intake. Hydration at time was also a problem. She ended up in the hospital a couple of times due to dehydration. Please unsure that he gets enough water and calories every day. We went on a schedule with the tube feedings whcih we did in the morning, mid-day and evening.

Debra, everyone's recovery is different, possibly because expectations figure in. I had a full load of rad and chemo, and three weeks later was out jogging - short distances to be sure, and the running was a few weeks away, but I was able to feed and hydrate myself via PEG, apply the Fentanyl patches and keep track of them, and could have changed the dressings on my neck if I had not had a helpful husband. While I was strongly motivated to put it all behind me in record time, I think someone less nuts than I would be able to be alone if he could take care of food, meds, and hydration. Because your job/insurance are very important, I suggest checking to see if there is a visiting nurse program whereby someone could check on him. Welcome to the Between a Rock and a Hard Place Club!

Thanks for the advice everyone - sounds like there's little one can anticipate in advance and I'll just have to wait and see. I am reassured that some of you (and your loved ones) rebounded quickly (insofar as self-care is concerned) so at least I know it's possible.

Debra,

As you can see from these posts, there is a pretty wide range of responses to the latter stages of radiation. I was one of those who kept working part time through treatment, but felt horrible through a period of many weeks and probably would have been emotionally devastated if my husband had been away on business at that point. All I can suggest is that you make sure your colleagues at work know of the seriousness of the situation and are prepared to help fill the gap for you.

(A couple of years after my cancer treatment, we had a role reversal -- my husband was hospitalized for weeks with a serious illness and I had to find out what it was like to be a caregiver. It happened at a time when I normally would have had to travel quite a bit on business, but I ended up having to tell my associates that I couldn't be out of town at all and they would have to cover for me for awhile.)

Cathy

Hi, My husbands 5 weeks out of treatment stage 4 base of tongue cancer.Its been a slow process, but there are positive signs, his speech is much clearer, that was really tough because he couldn't communicate and I was left to handle all the business he usually took care of. the financial stress is a big issue,He used all his sick and vac time and the FMLA ended so he has 6 weeks of leave of absence which is up in Oct 5th, he thought for sure he would be back to work but its not going to happen that quickly so they have extended the leave untill Nov. So we are on one income, mine which is part time, thank goodness my job has been understanding and gave me time to care of him. And I'll tell you it's so true about going to treatment everyday and feeling like your taking an active roll in beating this cancer. Because once that stopped I could see my husband get down emotionally he is home all day and when I get home he has a list of things he wants to do he is going stir crazy. So I feel like a taxi driver but I understand his restlessness so I actually stumbled upon this site and thought it would be could for my husband to communicate with other going through the same thing. But I have found myself using it. Well I guess I've gone off track. Yes it's been difficult we have to pay our health insurance out of pocket OUCH with mortgage pymts 2 Kids. One thing I will tell you is to have him sign up for disability through social security. My husband did but it won't kick in untill well after he's back and work and he can't use it then. But the social worker said to apply anyways because you never know whats done the line and then it would be there for him if he could not return to work.
Take Care

Debra,
I lived alone during treatment and recovery although I had a mother, girlfriend , sister and many friends nearby. I found no difficulty at all in taking care of myself at home and most of the time even drove myself to and from treatments and Dr. visits as well.

Having said that, I still mostly sat around and read, watched TV or slept and, when I returned to work, only came in for short days and did not take on anything too challenging. I did get a little depressed for a short while after treatment ended. The world can look a little gloomy when you are not sure if you have a future and all that you have to look forward to is your next tube feeding. However I turned it around by finding a support group, taking a two mile walk every day, making sure that a friends would come to visit, and running a short errand every day, even if it was nothing more than going to Walgreen's or to the grocery store or book store.
In a short while I felt much better. Best of luck.

Danny G.