Extreme negativity

Pclark21st

So were beginning week 5 of sn 8 week treatment if 3 Cisplation and 40 rads.  My bf had such a large tumor before detection on 12/15 that it blocked airway fir breathing and swalliwing so he had emergency trach and feeding tube.   He had just started new job so not eligible for STD or FMLA, so im soke breadwinner.  I have set up daily rides for him, applued fir any financial assistance, organized all his meds, equipment and supplies.  I hardly eat in front of him and if i do it's never food at top of favorite list he cant eat right now.  I manage all the calls for him, schedule the VNA visits, pay all the bills,  do all the household chores, pick up his every growing meds, grind up all his meds, prepare his skin 4/5 times a day to keep the sores away...I do everything, and i do it with needing my own back issues that have to take a backburner right now.  And i dont mind doing everything but i do mind the ever increasing negativity.  I get that this sucks.  I get that its crappy not being able to eat.  I get that having a trach stuck in your neck is constant spitting and coughing.  I get that i can't understand what its really like.  But this is all to be able to have a life after a short period.  I know there is a caregiver pagw, but any people gping through this or gone through this want to enlighten me cuz im losing it.  I just walk away, go to another room, take a drive to the beach...which that makes him mad.  ARGH 

CivilMatt

tough one

Pclark21st,

I truly do feel for you and the fact that you are over half way may be a blessing.  I would normally say he needs to buck up, be more positive and actively try to help himself, but it sounds like he is seriously depressed.  I may not have been an angel, but I tried from before treatments started to do what I could.  I went through 2 PEGs, but people eating around me never mattered. You do need to find a time for you (my wife did).  Do you think he really wants you miserable?  That sounds so cruel.

I hope things work out for both of you.  H&N cancer is a B _ _ _ _ and the post treatment time is no picnic.

Wishing you well.

Matt

lorijeannj

Been there minus the trache

Been there minus the trache although my husband was close to getting one.  Feel your pain.

I had a meltdown right about where you are now. It lasted 2 hrs then I got myself out of it

Its 3 months of a lifetime.

My husband as well had BOT plus right and left lymph nodes.  Finished treatment mid November, PEG out end of December.

Tongue clear, lymph nodes clear.  

Hang in there.  I am sure he has no idea what you are going through.  My husband didn’t as I didn’t let him know how tired I was.  

 

soonermom

Medical Team Support

I hope you are going to a cancer center for treatment. If so, they should have some type of counseling support for caregivers.  You might want to consider accessing those services for yourself. My husband's most difficult time was the end of treatment and the two weeks following treatment.  HNC is a beast.  

Curlyn

Hi Pclark, your boyfriend is

Hi Pclark, your boyfriend is young (I thought you said 30s) and he has had many losses in a short period of time- his life as he knew it, his body image, inability to eat (a basic but major drive in all of us), inability to have restful sleep, inability to speak (so hard to even communicate his sadness/anger even c a professional), loss of control over his life and future. Not to mention dealing c the hell of treatment. Prob financial worries, too. He's had no time to grieve for any one of these things or put them into perspective. You sound as if you are doing everything that you can but I think that I mentioned previously that you might need help. Are you able let the team know that you are in crisis, that you need help now/that your boyfriend needs another outlet for his anger/ that he needs screening for depression/you need someone to talk to, too? Can family help- schedule days where they can relieve you, clean, let you sleep, prepare food, etc.? Thankfully you are almost through the radiation part. You are an angel for all that you do, esp since you are dealing c losses, as well. I hope you are able to find support.

Frances_S

It is not easy being a care giver.

Hi PClark21,

It is not easy being a care giver. Treatment is Cruel and very depressing for the patient and the care giver. My husband finish on December 11, 2017. Unfortunately treatment gets progressively worse for the patient, even for several weeks after the treatment is over. For you as a care giver the stress will be over the top. I too got very depressed and angry at times. I cried and was fustrated when I would watch him give up. What helped me get through this was my friends and family, several girls nights out, reading a good book and my hobbies. Yes, I felt guilty to go out and leave him alone. So, I made sure somone was here for him when I went out. In addition this website helped me tremendously, and it still does.

I wish my husband would read some of the stories on this site, it is not that he has no interest, I think he is afraid of what he might read. My husband went from this very Happy, strong active man to weak and frail rapidly. He is slowly getting better but definately still suffers from depression since his treatment. I wish he would go and talk to some one.

Just remember he will get better in time and you need to take care of "you" and don't feel guilty. 

Frances

OKCnative

Treatment effects each

Treatment effects each patient differently. I've met many who really withdrew and became quite angry at the world. The toll on the caregiver is also overwhelming in many cases.

In my case, I was assured early on that SCC is extremely treatable and even curable. To me, that was all I had to hear. While I had bad days where i simply wanted to sleep all day, I never got depressed because i knew this was all temporary. I made sure not to withdraw from my wife, friends, family or the community. We'd take walks, sit outside, go to work for awhile, go to the movies and I'd even sit through dinners i couldn't eat but my family could. I didn't want to be "that person" who redefines their "normal" as negative.

My wife was very stressed during this time. Mostly because she felt powerless to do anything to help and we'd occasionally have entire days where I simply couldn't talk or communicate with her. This was such a complete opposite of our 20 year relationship. We've always been best friends and love spending time with each other and laughing. My treatment was during the summer months, which I was thankful for, but it also made it a bit frustrating because we are normally such active and outdoor people in the summer; garden, bee hives, working out, boxing, bike riding, exploring. 

The closest I came to getting angry and depressed was when my 3-month post treatment PET scan was misinterpreted and I was told my SCC BOT had metastasized to my heart and lung area and I was most likely terminal. Fortunately, my wife quickly focused me on "what needed to be done" if the end was inevitable. So, I focused on getting my affairs in order. Fortunately, 13 days later a second opinion and a CT scan showed that my oncologist was wrong and i was simply suffering from a massive infection with no symptoms.

The point, is, we have no idea what life is going to throw at us, and while most of the cancers on this thread are treatable and curable - inevitably there will come a day when we will all take our last breath. Do you want to do that with regret, depression or anger. Or, do you want to do it with a smile that you gave it your best shot?

SuzJ

He needs..

to stop feeling like a victim, and more like a survivor.

 

I think my down time came after I was told I was clear (wierd huh?) I finally gave into the realization that I had got a bit too close to the edge.

Luckily I didn't do that at the beginning, I thought I was Superwoman, boy was I wrong! But I couldnt let my son see how bad I was feeling, I couldnt hurt him like that, he was already terrified.

Talk to the team at the hospital, you may find a support group for you both, or one each, but you really need to, and soon. I could feel your pain.

We are here if you need us, you can use us for therapy we all used each other!

MySoCalledLife

He needs depression help

You sound like an amazing caregiver. He’s lucky to have you. I’m sorry you are going through this too. 

I’m a cancer survivor so I was in your boyfriend’s position. I think I was similar to him in my attitude. I had little will to live as the treatments progressed. My husband did everything and we had extra help every week. Each week someone from my family would come to help us. That helped take some of the burden off my husband. For those saykng he just needs to buck up and be more positive...it’s not a choice for some of us. I was already on depression meds and there were periods of weeks where I essentially was just crying and somewhat despondent. I was 29 when I went through this. We aren’t emotionally developed or prepared to deal with something like this. I lacked the coping skills. Also thr meds he’s on are contributing to the depression. Is he on oxy or another narcotic? 

Here are a few things that might help...

Help for you:

1) Get more help for yourself.. where is his family and friends? These treatments are very aggressive and I hope he has family and friends that get that. Even if people can’t be there for a week, etc. Set up a Sign Up Genius for people to come over in shifts to take care of him or just sit with him. 

2) Get therapy for yourself and even him. There are free therapy hotlines. My mom used it when I was sick and it was really helpful. Here’s the info for one such line, but there are probably others out there. Call 1-888-793-935 (Monday through Friday from 9:00 a.m. - 9:00 p.m. ET)

Help for him:

1) He can get a cancer survivor mentor. He should contact Imerman Angels and they will match him with someone who has had similar treatments, is close in age to when they had treatments, male (ideally) and sometimes even local. This was a huge lifesaver for me. This disease is very isolating because no one can relate and you feel very alone. Most of the support groups have older people in them. I would have him do this immediately. I am also happy to be a survivor mentor for him. I’m 37 now and 8 years our from treatments. I’m female but gender doesnt impact treatments. I may not be able to answer or relate to concerns he has in some ways, but for the most part I should be able to help him. I think you can message me directly in the boards and we can connect that way if he wants to take me up on it. I’ve been a mentor to 4 people now and we’ve done it through text, email or phone depending on the persons preference and ability. 

2) He should start a list of ideas of things to he can do. TV shows he wants to watch. Books on Audible to listen to. And mini goals like walk outside the house for 5 minutes. These can be the smallest of goals, but having things to accomplish every day that are enjoyable are really important to him feeling like he has things to look forward to and a things to accomplish (no matter how small).

3) He should try writing a journal. It will help him get the negative feelings out and can help him process those feelings.

4) Meditate. I suck at meditation but there was one that worked well for me, even though I almost always fall asleep before I finish it. It’s Jon Kabat-Zinn’s Mindfulness Meditation album, and its specificaly called a “Body Scan.” It looks like he can listen on YouTube for free: 

https://youtu.be/_DTmGtznab4

 

I hope some some of this helps you and him. Sven if he is negative for awhile, you can improve your own feelings about that through support systems, doing your own meditation, remembering that this is temporary for you too, and that he is suffering in a way that few can understand. He’s likely doing the best he can right now, even if it’s not doing that well at all. 

Please do reach out if I can support him or if you need to talk more!