My husband of three years has just finished radiation and chemo, and now is in the wait stage before the follow-up PET scan. Initially, the battle against his cancer was a joint one. We went to his doctors together and I stayed with him when he was in the hospital. Then as the weeks turned into months, my husband became more and more withdrawn and irritable. I was no longer welcome to be with him during radiation or chemotherapy (He says

Lily - Try to hang in there - being irritable and distant and depressed is part of the whole recovery process. There are good days and bad days. My son - during his worst recovery days - was definitely not a "happy camper". The loss of a previous way of life with the control and responsibilities one is used to is difficult to adjust to. We did a lot of text msging and laptop writing to communicate when I was taking care of him. At one point, it was almost funny the way he got so excited when furiously typing a msg on his laptop and finally started to yell out loud (well, as much as he could manage with the pain it caused him) about something he was unhappy about. Maybe if you talk to him about your feelings without being accusatory, he might get an idea of how difficult it is sometimes, just being the caregiver. The 3 or 4 weeks after radiation are usually the worst for the patient/survivor but it does get better after that. Is he on any medication for pain? Perhaps you could let his doctor know about his mood and whether it might be depression or if he needs something else. Lots of people get depressed about thi time and it is difficult to see a loved one in such distress. Sometimes all you can do is just hold him gently or touch his hand. Your 18 yr old must also be worried and feeling the change. Please reassure him/her that things do get better gradually. Perhaps the upcoming empty nest will give you and your husband a chance to find some special moments to re-connect. Do let us know what happens.

I never had any good days - they went from fair to horrific! Maybe it's just a matter of perspective.

It is much easier for some people to be "patients" than it is for others. Some people feel they will be loved and value and attended to no matter their struggle and what it requires of significant others. Others believe thay must not overburden others with their needs and wants and fears and move away or push away when they are afraid they will be viewed as needy or diminished. Yhis type of cancer does so many things that may lead some people to feel diminished: fatigue, pimples, weight loss, loss of hair, not being able to work, being fed through a tube, throwing up, loosing teeth. Maybe it's easier to push someone away when you are afraid they will ultimately push you away?

That could be, Sophie - maybe that's why they need to be reassured that the love you have for them is not dependant so much on the outward appearances but rather on the true inner beauty of the person and the love connection that you have. My son told me one day about how he had expressed to his therapist that he felt badly about having to rely on me so much for everything, even tho' I had repeatedly assured him that I loved him and wanted and needed to help him thru this cancer fight. He said his therapist asked him if he wouldn't do the same for his daughter if she needed him? It was then that he understood. Just being able to keep busy doing something is what helped me get thru the dark days and keep the anxiety attacks at bay. That, and of course this OCF site and the many compassionate people who made me feel I was not alone.

Hi Lily,

I got "fired" before we even started. I think Dan was just SO mad at the diagnosis he kind of lashed out at me.

Although, that period was short lived, I have made it to every appointment and treatment. And, like you were during treatment, we feel very strong as a team while we are undergoing the fight.

I am concerned about being in a situation like yours post-treatment. I understand the phase you are in currently is one of the roughest. When did your husband complete treatment?

Because of all of the potential issues post treatment, my husband's medical team wants him to consider anti-depressants now as they tend to take a couple of weeks to get into the system and he has just over two weeks to go of treatment.

However, my husband is adamant about not wanting to consider that option. Has this been discussed with you and your husband?

I have been told privately by our healthcare team that day by day the treatments and post treatments rob each patient of their independence and this is almost as hard emotionally as the treatments are physically.

How independent is your husband at this phase? Is he able to drive...track his calories/fluids...keep track of meds? Could you give him some space and take a little time for yourself and your son?

I don't know if this helps, but I have a neighbor who was finishing up treatments for oral cancer the week my husband was diagnosed (back in May). Seeing their lives show signs of normalcy is what keeps the light shining at the end of the tunnel for me. That, and what I read here.

I have hopes that our marriage will be stronger after this than it was before. Although, I am very aware that this journey will likely get harder (and possibly rougher on our marriage) before it gets easier.

Please let us know how far along your husband is post-treatment. I think that will help people help you more. And, as people give you advice, I think that will help many others. I do not believe you are alone at the stage you are in.

All the best,

Now that Tx is over things will start to get better for him and therefore you in a few weeks.

Remember he wants his life back to and up to now he doesn't see any light at the end of any tunnel. That will change and so will his attitude but please continue to be patient.

I just wanted to say that I am also a new member (just found the site a couple of days ago, yeah!) and I have also gone through a lot of the issues you're going through (if you're interested, look at the Introduce Yourself board for Annie M). My husband, 6 mos post tx, was almost worse (ok during the fight but unhappy with final results) after tx but davidcpa and others helped give me perspective that things will get better. My husband also did (does) the somewhat pushing away "thing" but I am realizing that this is all part of the process. Hang in there and know we are all there for you and your husband. This entire forum has been a Godsend for me, even in the short period of time I've been here. I hope the same for you!
My thoughts/prayers are with you and yours!

I can't remember how many time John fired me :rolleyes: [as did his Doc a few times-who, at one point, told me to quit taking John's blood pressure 4 or 5 times a day,and to let him sleep as much as he wanted] Lily, I don't believe youall have disconnected, but what he is going through can only be sorted out by him on a gut level within himself, Your role is to give love and support and stay strong. Amy in the Ozarks

i spent mant hours writing the self same thing about my husband during his post treatment stage and it eventually resulted in us parting company for a couple of weeks.Be patient and take on board all the advice given to you here by many many people who have walked this route and survived.

good luck

liz

Lily, my husband took really good care of me while I went through surgery, rad, and chemo. Not until I was well again, did he have a serious heart surgery, where I became the caregiver. While I was the perfect patient (grin), he was NOT. Part of this is the male desire to be in charge, I am sure. His condition was not at all the same as cancer, but I learned that I had to just back off, and let him do what he wanted. I made sure he ate and had the proper meds, and otherwise just let him defy doctor's orders as far as what he was not supposed to do. I think backing off is the hardest part for those of us who have a desire to nuture, but I have decided that the male brain is not going to allow us to do what we think is necessary. It is an understatment to say there were some raised voices (grin), but eventually everything got back to normal, to my amazement. I am sure your male patient is just asserting his "right" to make his own decisions. You are not fired, just usurping what he sees as his rightful place to decide what happens. Lily, you are part of a great sisterhood. We understand.

To Lily and all the other wonderful caregivers..


I sit up late at night ..not being able to sleep ,or should I say into the wee hours of the Morning..The strength,courage, determination and comapssion you all show is overwhelming and amazing. My heart aches and the tears flow for all that you go through...

While we as patients have our struggles and issues...you all have you own as well as many of ours.. I can't say which is harder nor would I even want to ..they are probably both in the same and def a situation I wish I had never been put into.

PLease know...I read this forum pretty much daily , nightly and whenever and it is a major reason I have been able to "cope". But It is also the compassion of you caregivers as much as the Pts themselves......You do it for us as well as your loved ones....You all are my caregivers too in your own ways...and for that I admire you. TO be able to get up and do what you do everyday and still come on here and be there for someone else..possibly a million miles away with a face you have never seen or a voice you have never heard......with the same compassion you give to the one you care for daily .....it is wonderful and please know that if your patient is angery or mean or anything .. I can almost be assured it isnt at you ..it is at this horrible disease that takes so so much from us ...like our ability to sleep for one!!! And you are probably the closest one to lash out to ,

and while it isnt fair ..it happens....So for all of you out there..Who deal with the hardhsips of being a caregiver ..Please look at yourself in the mirror...and try to see what I see......and I am sure you will feel somewhat a little better ..when you see that truley amazing person looking back !!

I can only hope..that if I have to go through this again ....( biospy results on thurs) My husband will be able to be 1/2 the person that all of you are...Honestly I don't have the most faith in that ..LOL...( the comapssion part throws him hahahaha) But I know that I will have all of you !


Shar

Shar, that was beautiful! and I needed to hear that. I know my husband cares deeply for me and this had been an awful time for him and our family. I think it is a male thing though. Most of the CG are women and it is indeed a sisterhood. I thank each and every one of them for sharing their expierences as it help each one of us to cope each day and the sun comes up weather we want it to or not. Praying for good results for you. LJ

Lily,

It took my husband almost 2 months after his last radiation session to feel even close to normal again. if your husband is on Fentanyl, that could also contribute to his mood: anxiety, irritability, and depression are all major side effects. If he has just finished treatment, he may be angry that he doesn't feel better yet. My husband thaought he would feel better in a couple of weeks, rather than months.

If your husband follows the same recovery pattern, he should feel like himself again by the end of the third month after treatment.

It was so hard to remind myself that it was the drugs and the pain and not my husband talking when he snapped at me. he told me he was sorry when he felt better - about 2 months post treatment.

Hang in there. It does get better.

I'm not sure it's fair to say most caregivers are women. I do think the women caregivers are more likely to reach out for support. It may be harder for men to be caregivers OR patients because they do not have that tendency that most women do to seek social support in times of stress. And this is a diease where you need social support no matter which side of the patient/caregiver equation you're on!

Nelie

Nelie - it may be because men have historically gotten oral cancer at a 5-1 rate, and still this year get it at two men for every one woman....

Well, it's true that would make it more likely that "most caregivers are women" I guess. Perhpas because I am on the wrong side of this equation (woman patient), I dislike the things that designate one role for one sex. I always bristled a little when I heard "band of brothers" used to refer to the group of patients here who'd been through radiation hell and I can imagine how it would feel to be a male caregiver reading this board and seeing the group of caregivers here referred to as a "sisterhood".

Nelie

Just wanted to add that I may also be a lot more aware of the strong role male caregivers have in caring for wives, mothers, and daughters because I've had breast cancer and there almost all the caregivers are male!

I too was fired on numerous occassions fortunately I had the support of wonderful friends to get me through my husbands battle with treatment...they laughed and cried with me daily. I often said if the cancer doesn't kill him I surely will. Then treatment was over and I was so expecting this miraculous awareness to take him over and enlighten him to be grateful for everyday and to appreciate me. It came but almost two years later. I am so glad now that I gave him the room to find his new normal. Still I never expected it to take so long. Be good to yourself and take breaks whenever you can.
Patience works but so does just a little self indulgence. It can really make you stronger.

I think men can be good caregivers when need be....Not to be sterotypical as I really try not to be..I think women by nature are nuturing ( of course so are some men) so it is just more expected...however ..I think it is expected of anyone who has a loved one in the situation. Some are just better then others.....I honestly can't IMAGINE my husband being as wonderful as all of you are and I hope to GOD I don't have to find out!! He is a great provider and a Good GUY ( when he wants to be ) But Nuturing he is NOT !

somtime I find him lashing out at me over all this !!

All said and done ..I just think this disease is just as much emotional and mental as it is physical maybe more so ....And it isn't a disease for ONE .....It is a disease that effects everyone around . Again I commend all of the caregivers out there .....you are a group among yourselves......to def be on a pedastal in my book !!!

Shar

Nelie, I have marched, and run from angry police, in support of equal rights (when I was younger and faster). I was not slighting male caregivers at all, of which my husband was an extraordinary one, only referring to all women caregivers as a sisterhood in the context of this thread.

Hope this clears things up.

I don't believe that I could have been as good as a CG as my wife but I do believe that I was a better patient than my wife would have been. Now I was a pretty bad patient but my wife is far more stubborn than I could EVER be which is why in my opinion she was a great CG.

Nelie, as a male patient I didn't come to this site for social support, although it's a definite benefit. I came for education, knowledge and answers which was even better than I could have imagined.

I'm not a good patient either, when it was determined that I had, indeed, had a stroke [about 8 hrs. after it started] I refused to go the hospital - "just give me some medicine and let me go home". That was a stupid and hardheaded reaction. But during the ensueing rehabilitation of adjusting to the loss of sight in one eye and the loss of lots of brain power, my husband was a consumate caregiver [especially during the times I insisted he leave me alone!] Even after I regained some control over my brain and adjusted to life with one eye, he continued to do many of the things that I could have done[yep-he spoiled me rotten]. Caregiving isn't defined by gender- in my experience it is defined by strenght, determination and love. Amy in the Ozarks