Help please! Brother with tongue cancer
Hello! As with most stories, mine is long- this is part venting (I'm in what I call the 'verbal diarrhea' stage of a crisis) part plea for help about what I need to do to help my brother who has advanced tongue cancer :
I am 50 years old and have not seen my mother since 1985 (she was an alcoholic, addict and drug dealer starting her spiral when I was about 2 years old). My only brother is 15 months older than me, and he and I have had maybe a dozen points of contact over the past 25 years- he's been a raging alcoholic (and used many drugs in teens and twenties) with a temper and angry personality for the past 30 years. He and I fought like cats and dogs our entire childhood. I got away from the family and have created a nice little life for myself, happy to have separated from their diseases.
3-17-2016, St Patrick's Day, I got a phone call at 9:35am, just before I was leaving for work (I'm a substitute teacher). It was my cousin- whom I haven't seen in 30 years- telling me that 1) my mother had died the previous Sunday 2) my mother had left her entire estate to my brother, and appointed him executor and 3) my brother was living in a dangerous situation suffering from untreated tongue cancer and someone needed to go get him. Because he is the executor and sole beneficiary of our mother's will he needed to be brought home to deal with that. My cousin assumed that he would be declared incompetent and she's listed as #2 executor, but although he's very ill, his brain is as sharp as ever.
I bought a plane ticket and flew to New Orleans the next day, Friday, and managed to have the sense to seek out a private investigator based in New Orleans who picked me up from the hotel Saturday morning and went with me to get my brother with a gun tucked under his shirt. (my brother had sent me an email in November 2015 telling me he was living with two guys who had threatened his life, but he didn't have enough money to find another place) He had had tongue cancer diagnosed by Lousiana State university Jan 2016 and was scheduled for surgery- his entire tongue needs to be removed, jaw reconstructed, trachea breathing hole put in and feeding port installed- but two days before the surgery the hospital told him they couldn't establish that was a legal Lousiana resident (he'd been unemployed for many years and was sharing a place so he had no electric bills in his name, no pay stubs, etc to establish that he was a Louisiana resident- my mom had apparently been sending him $1000 a month which was just enough to pay for rent, vodka and cigarettes)- so they told him the surgery would cost some exhorbitant amount, so he went home. He's not been able to eat solid food since November 2015, and has been living on Sprite, orange juice, vodka and cigarettes for the past 6 months and has lost 80 pounds (he was fat before this started, thank goodness, so he had some reserves to pull on!) He has had no internet, tv or phone for many many months.
So the private investigator picked me up, and we went and got my brother out of a hell hole. he was sleeping on a bed in the kitchen, wears diapers and the roommate was doing nothign but purchase alcohol, ciggies and beverages for him. He walks with a cane, has lost 80 pounds in 5 months and can't get up from a chair unassisted. I took him to the ER at Tulane unversity where they checked him out- I wanted to make sure he was safe to fly home because it's a long way to drive from New Orleans to Seattle! He refused to spend the night but stayed long enough for them to give him fluids, Tamiflu (he tested positive for tupe-a flu) and some concoction with potassium- his white blood cell count was 25,000 (normal is 12,000). I took him back to the hotel and when I wasn't looking, he snuck to the Shell gas station on the corner anc bought 6 1/2 pints of vodka- I told him I wasn't going to fight that issue. We flew home Monday, I got him to my doctor Tuesday who told me to take him immediately to the University of Washington ER where he was admitted. The docs are evaluating his case, but confirm that he does need to have his tongue removed- he gained 4.5 pounds in the first 72 hours he was in the hospital. He threatened on Wednesday to leave the hospital AMA and just wanted to return for the surgery, but I went back on Friday with all his belongings and told him if he leaves AMA I'm walking away. He had $80 in his pocket when I picked him up and it will take 6-9 months for the probate to be settled, so he's broke until then.
The docs are not communicating with me at all. The only reason I got any info is that I went and sat in the hallway at 8am Friday waiting for the docs to come do their rounds- they got there at 9:30- that's when I learned that the cancer/medical team meets on Wednesdays and they will evaluate his case on 3-30. David did tell me that he thinks they are installing a food port in the next couple of days, which I take as good news and that they think he'll be able to get the surgery. I can't keep showing up at 8am every day waiting for the docs to come by- I can take a lot of time off of work and have a flexible schedule, but it will wear me down very quickly if that's the only way I can find out information. My brother has difficulty speaking, and can only explain so much. I've contacted the social worker several times but haven't heard back from her- the nurse told me yesterday that my brother needs to contact the social worker himself to let her know that I should be kept in the loop, but I don't know if he's followed through on that yet- I'll check Sunday.
I am his only sibling, and the only person in the family who has the means to cover his bills (meaning my mother's bills, which he's now resposible for) until the will settles. I have no idea how long he has to stay in the hospital, nor what kind of care he will need after he's discharged. He can come live with me unless he needs more than a visiting nurse can do for him until he's capable of living elsewhere- either an assisted support facility or somewhere where a visiting nurse can come as needed (which I'll get when he comes to my house, too). i've gotten him a lawyer to help with the will, and we'll try to hold off on settling things for as long as possible because right now he's eligible for free health care- when the estate settles, he'll have enough money so he won't be eligible for anything through Obamacare.
Does anyone have the energy to tell me what to expect? Recovery time? How long in hospital after surgery? Will he need to be in a nursing home for a while after he's discharged or will they try to send him home with me? Do most people who have this use a smart phone or an i-pad to facilitate communication post-surgery?
I found a couple of nearby cancer support groups, but they meet just once a month, and of course, the first meeting I can find doesn't happen until April 5th.
Thanks in advance for anyone who can help- I have never had to deal with most of these sorts of issues before and although I can line up docs and lawyers, I feel as if I'm in an information vacuum.
Sincerely,
David's Sister.
Comments
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Hi David
Man sorry to hear about your Mother and your brother, but one thing I found out about family is you can’t force them to do anything agents there will. If he doesn’t want to fight the cancer or come home to take care of your Mother estate, then all you can do is stay in contact with him and let him live what life he has left.
I too have a brother living in New Orleans, he does not work just lives from garbage can to garbage can and sleeps in an old abended house with his dog.
It is sad but I can’t do anything agents his will but pray for him
Will keep you and your brother is my prayers
Tim
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Well, good grief
First of all, take a breath and let it out slowly.
I don't have a clue as to what you are going to face where you live, DS. He needs to sign a HIPPA release. You need to discuss end of life care and his wishes for extreme measures to prolong life because he is a very sick man.
Do you even want him to come home with you? The personality he has had all these years is likely the one you will face if you bring him into your home post-surgery. Brace yourself and establish ground rules as to what you will tolerate behavior-wise. He'll de-tox in the hospital. The emotional part is what you will deal with.
I'll say a prayer for you and your family, DS.
I'm amazed it is confined to his tongue. I'm assuming there was a PET.
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tough one
David’s Sister,
Welcome.
Most of us started this journey in decent shape both physically and mentally with a desire to fight and it is still a rough road. To begin in the opposite may jeopardize a positive outcome.
Treatment, side effects and recovery for the luckiest H&N members can be as short as 3 months, but for many it stretches out to 6 months to years.
Caretakers are the unsung heroes who make a successful completion possible.
You truly need to seriously evaluate your options. If you chose to jump in, wear some body armor and bless you.
Matt
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Welcome to H&N group
Welcome and not sure if I have much advice. So I will start off with i'm no doctor, but I will have to be a little blunt as you are looking for answere and the truth. So here goes, first of all he needs to want to fight this. He needs to sigh a release so they, nurses and Doctors both can speek to you and keep you informed. Hippa release and if he doesn't. You might as well just go home. If he does want you to be there and help, buckle up for the roughest ride of your life. The alcohol will be a problem but he can detox in the hospital. With the alcohol he may not fully understand, and when he does and the reality hits him, he may just give up. This will be a very rough road for him to go down as it is concidered the 2nd hardest treatment to go through ant Head and Neck cancer. If they have to remove his entire toung is sounds very advanced. We have several who had BOT [base of tounge] cancer and some lost part on the tounge which does make it harder to speak. As for me, I had my larynx removed and no radiation or chemo. Just took 86 lymph glands and my vocal cords, but I can still voice. Your brother will have a trach and breath through his neck, and I may be able to help with that. I am a total neck breather and have a stoma which is for life. That can take some getting used to, but it can be done.
My guess is surgery then radiation and most likely chemo. Radiation can burn the skin and make it tough. The chemo will make him sick, but will get ride or the small cells of cancer.
Your brother needs to tell you he really wants to fight for his life, because that is what it is going to be. It will take a full commitment on his part. I would guess he will go through depression, and just might never speak again. That is major and some just can't deal with that. As for writing, what is called a boogy board is best. Target Walmart and Amazon all have them. You have already received great advice from Hondo, Noellesmon, and Matt. All of what they said is fact. I too have an estranged sister going on 20 years. If I run into her in public I will always be polite, but prefer to just never see her. Now lets not forget the cousin who will most likely try to cause problems as money is envolved and as #2 they are going to be a real pain for you both. Now you did not mention smoking, but most drinkers smoke. If he doesn't that is in his favor, but if he does he has to stop as the odds of it returning is close to 90%. If he quits or doesent they drop to 25%, which is 75% it wont. You are to be commended and wanting to help. You won't be alone as we all will give you support. Have your Brother take just one day at a time.
Bill
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Hi,
Wow. Sorry but I thinkHi,
Wow. Sorry but I think you may need counseling along with your brothers treatments. You werent close to him before and you really have a strong desire to save him now. He might not want saved or he might want to be saved but cant be because of his addictions and personality. God Bless.
Karen
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