Devasted Care Giver, Could this really be it?
I am caregiver to brother in law Gary, age 35. Pittsburgh, Pennsylvania
Wife- has to be back where they live to work, Washington State (miles apart from wife is one obstacle)
DX 2006 with SCC on R Cheek, Surgery then radiation.
Feb 2010 recurrence, 9 hour surgery to remove tumor, some bone shaved from Jaw. Recovers enough to be able to go back home to Washington.
April 2010- New tumor appears at corner right above lip. Another surgery to remove tumor, then radiation and chemo all summer.
He did so well over the summer. Stayed active, walked the dog, enjoyed time with my husband.
August 2010 went back home to Washington after he completed treatment.
Nov 2010- Back AGAIN! 23 Hour surgery to remove left side of jaw, bone from leg to replace jaw. Free Flap. One week later, had to have new bone removed due to complication. (numerous lymph-nodes removed, a couple cancerous)
He came home with us to start recovering, seemed to be doing ok, but then WHAM...TUMORS started showing up almost daily on his face and neck. These are visible tumors, some that bleed.
Doctors this time says he's terminal, there is nothing more to do. They started him on Carboplatin, Erbitux and 5FU to try and slow it down a little. Starts Radiation today to try and shrink HUGE tumor above collar bone for pain relief. So far, no metastasis to lungs. Is it only a matter of time? If they gave him a time frame, he hasn't told us.
We are sooo devastated as this is happening so fast. Is he really dying at our house. So sad.
Comments
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Strong family.ratface said:So sad
I'm saddened also and have to admit a little depressed, 35 y/o only. It can be a devastating disease as we all know. Whatever happens I know he is in a good home and will be taken care of. Please take care of yourself and keep posting.
I too, like Ratface, am very sorry to hear of this most recent, aggressive attack by the foe we all face. This aggressive cancer sounds very different from the one I know about going through diagnosis and treatment with Mark. So I am sorry that I cannot provide any practical advice around your brother in law's treatment. I can say you have been an amazing family to have provided him with the love, support, and care for all these years. Please do what you need to do to take care of yourself and all those in your home during this time, as you continue to provide comfort for your brother in law.
You can get much support here on these boards.
Good energy being sent your way,
Kim0 -
I am sorry that I have noJUDYV5 said:So sorry
c is a devistating illness. It is obvious that he is in a good enviroment surounded by caring family. You and your family will be in my prayers
I am sorry that I have no advice to give you. I can only offer prayers and support. His cancer sounds much more aggressive than what I had. Please know that you are welcome here and that you can find people here for help and support 24/7. I hope that there is someone here with more advice for you.0 -
Brother in law
So sorry to hear of your brother in law's recurrances and pain. Given the doctors' prognosis and your own observations, it sounds like your friend is getting ready to move on to the next level. I get that phrase from a local radio talk person who is standing by hiw own son as the son passes away from cancer.
Our culture as a whole turns a blind eye to dying, and your brother in law is lucky to have you and your brother with him. Some people here are lucky or blessed to belong to a local community of faith which provides comfort and understanding. If your husband and brother in law are comfortable with him being at your home when he passes, then that's a good thing. Others here have chosen to use a hospice service, one of the only institutions in our society that does accept and deal in a thoughtful and dignified way with our transition.
I wish for your friend and family member to not suffer, and for you to continue to have the strength to show him the love you have for several years.
best, Hal0 -
Welcome
Welcome, knroth. Very sorry you have a reason to be here. I do know of several people who have experienced recurrence(s). Unfortunately, I'm not recalling anyone who had tumors showing up almost daily. Doesn't mean it hasn't happened, just that I don't recall hearing of it. I wish I could be of some help; I'm hoping that someone with some experience with this reads your post later. All I can offer is bits of advice here and there on dealing with treatment. I was on two of the three (carboplatin and 5FU) drugs he's on now. Has he been on these drugs before? I will say (and I'm sure the doctors have said) that I'd recommend you put a good deal of effort into making sure he gets in nutrition and water. I had some dry, peeling skin issues; it helped me to use petroluem jelly at night (I'd goo up my hands and feet, and wear socks and gloves) and aquaphor during the day. If he's had these drugs before, I'm sure there's no need for me to tell you what might help. Please post, though, with any questions you may have. I'm a huge fan of the helpful folks here, and know that any number of people will offer help whenever they have knowledge to share. Do you or your husband drive your brother in law to appointments, then wait for him, or do you sit in? If they're saying he's terminal now, perhaps you can ask at the doctor's office (social worker, maybe) for their advice on home health aides or hospice workers to help out. Even if you need no help with cooking, cleaning, grooming, etc., they can provide information and emotional support. Sometimes being able to step away for a while is a wonderful thing, too - are there any other family members who can sit with him a while, or does he not need someone with him all the time?
Wishing you and yours well.0 -
Hi Knrothratface said:So sad
I'm saddened also and have to admit a little depressed, 35 y/o only. It can be a devastating disease as we all know. Whatever happens I know he is in a good home and will be taken care of. Please take care of yourself and keep posting.
I too am saddened by the news and it is hard to find words for me to say to express my sorrow.
Hondo0 -
Wow that is rough, poor guy and you as a caretaker what you
Wow that is rough, poor guy and you as a caretaker what you all must be going through. My heart hurts for your pain. I can only think of is prepare for the worst and hope and pray for the best. By prepare I'm thinking of his quality of life and things he really wants to do. Make a wish for adults might be a good one to contact. I'm not saying this to give up, but to bolster his spirits. I'm sorry your all going through this. Take care, Shelly0 -
Thank YouPam M said:Welcome
Welcome, knroth. Very sorry you have a reason to be here. I do know of several people who have experienced recurrence(s). Unfortunately, I'm not recalling anyone who had tumors showing up almost daily. Doesn't mean it hasn't happened, just that I don't recall hearing of it. I wish I could be of some help; I'm hoping that someone with some experience with this reads your post later. All I can offer is bits of advice here and there on dealing with treatment. I was on two of the three (carboplatin and 5FU) drugs he's on now. Has he been on these drugs before? I will say (and I'm sure the doctors have said) that I'd recommend you put a good deal of effort into making sure he gets in nutrition and water. I had some dry, peeling skin issues; it helped me to use petroluem jelly at night (I'd goo up my hands and feet, and wear socks and gloves) and aquaphor during the day. If he's had these drugs before, I'm sure there's no need for me to tell you what might help. Please post, though, with any questions you may have. I'm a huge fan of the helpful folks here, and know that any number of people will offer help whenever they have knowledge to share. Do you or your husband drive your brother in law to appointments, then wait for him, or do you sit in? If they're saying he's terminal now, perhaps you can ask at the doctor's office (social worker, maybe) for their advice on home health aides or hospice workers to help out. Even if you need no help with cooking, cleaning, grooming, etc., they can provide information and emotional support. Sometimes being able to step away for a while is a wonderful thing, too - are there any other family members who can sit with him a while, or does he not need someone with him all the time?
Wishing you and yours well.
Thank You for your support. We have a palliative care nurse coming today for the first time. Brian and I alone are having a hard time keeping fluids in Gary as he has been very nauseated and refusing even water. He eats only through a g-tube as he cannot swallow. I do not believe he was on this chemo regimen before. We are just trying to do the best we can without pushing him too hard.
Thank You soo much again!0 -
This comment has been removed by the Moderatorkingcole42005 said:Wow that is rough, poor guy and you as a caretaker what you
Wow that is rough, poor guy and you as a caretaker what you all must be going through. My heart hurts for your pain. I can only think of is prepare for the worst and hope and pray for the best. By prepare I'm thinking of his quality of life and things he really wants to do. Make a wish for adults might be a good one to contact. I'm not saying this to give up, but to bolster his spirits. I'm sorry your all going through this. Take care, Shelly0 -
I feel so sorry for him.
I feel so sorry for him. This also happened to my husband Elmer and he didn't even want anyone to see him with the tumors cropping up all over his face and neck. They did try Erbitux when this began happening, but after 12 weekly treatments, they said nothing would help him. This is why I always say Head and Neck Cancer sucks and is so cruel. My thoughts and prayers are with him and also with you as a caregiver. This is a very difficult time for all. Betty0 -
big hugs
This is a hard thing. My husband Patrick is in hospice so I know the place you are in. He has one big tumor that is pushing thru the skin and it bleeds also. The best thing I can say to do is what the hospice nurses tell me: keep it clean, put a bit of lotion on it to keep the skin moist (if the skin is dry it will pull and hurt), if it seeps or bleeds keep a gauze pad on it and when you need to change it do not rip it off wet it with water first to gently dislodge it.
If your brother is in that position, get hospice involved as soon as possible. They are amazing people and will be able to give you all the help they can.
As for the lack of spouse, I have no comment. Everyone reacts differently.
I wish you serenity and a peacefulness that will help you right now and in the future. If you need anything else, don't hesitate to ask.0 -
Time
I am so sorry to hear about your BIL, Gary. I have no medical advice because it sounds like there is not much left to do in that area. But I would tell you to be prepared as if it might end tomorrow...because it might. If the docs have not given a time frame, you can always come right out and ask them. But of course, they only can give what the "norm" or "average" is for this particular situation.
You didn't say whether the wife was changing her priorities based on this latest development. If she is not making arrangements so that she can be with her husband in these final stages, I would try to have someone close speak to her. If she delays and Gary passes quickly, I would imagine that there would be an enormous amount of guilt. My husband died 3 weeks ago (looking at the clock right now, almost to this minute). I had been with him constantly for the last 8 months and I am still ridden with guilt for things I felt that I didn't do for him.
May God be with you and your family as you care for him until the end.0 -
Ms. Debbiedebbieg5 said:Time
I am so sorry to hear about your BIL, Gary. I have no medical advice because it sounds like there is not much left to do in that area. But I would tell you to be prepared as if it might end tomorrow...because it might. If the docs have not given a time frame, you can always come right out and ask them. But of course, they only can give what the "norm" or "average" is for this particular situation.
You didn't say whether the wife was changing her priorities based on this latest development. If she is not making arrangements so that she can be with her husband in these final stages, I would try to have someone close speak to her. If she delays and Gary passes quickly, I would imagine that there would be an enormous amount of guilt. My husband died 3 weeks ago (looking at the clock right now, almost to this minute). I had been with him constantly for the last 8 months and I am still ridden with guilt for things I felt that I didn't do for him.
May God be with you and your family as you care for him until the end.
Please please do not feel guilty. You did everything you possibly could and you know that. So did your husband and he knew that too. Until the end you were there for him and you were the person he wanted most. That should tell you something.
You have my numbers. Love ya.
April0 -
I am so sad hearing of yourmswijiknyc said:Ms. Debbie
Please please do not feel guilty. You did everything you possibly could and you know that. So did your husband and he knew that too. Until the end you were there for him and you were the person he wanted most. That should tell you something.
You have my numbers. Love ya.
April
I am so sad hearing of your Brother in Law...here I was just saying how my Husband is going back to work p/t...my heart hurts for u and your family..Cancer is such a horrible disease..my prayers go out to you and yours..0 -
Brother-in-Law
My heart goes out to you! I was a Hospice nurse and Hospice services are invaluable in easing pain and suffering in the patient as well as the family. His wife should be with him pronto! Take care of yourself during these extremely difficult days. Keep in touch. We are all here for you!0 -
Stay strong!buzz99 said:Brother-in-Law
My heart goes out to you! I was a Hospice nurse and Hospice services are invaluable in easing pain and suffering in the patient as well as the family. His wife should be with him pronto! Take care of yourself during these extremely difficult days. Keep in touch. We are all here for you!
I am sorry to hear about your brother-in-law. I have no clue or experience with this aggresive type cancer. I just wished to say how wonderfull a caregiver you are. All I can do is offer prayer's & support to you all.
God Bless
Roz0 -
thanks Aprilmswijiknyc said:Ms. Debbie
Please please do not feel guilty. You did everything you possibly could and you know that. So did your husband and he knew that too. Until the end you were there for him and you were the person he wanted most. That should tell you something.
You have my numbers. Love ya.
April
My head knows that what you say is right, but my heart is still struggling with it.
debbie0
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