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Introduction

sin9775's picture
sin9775
Posts: 199
Joined: May 2013

Introduction

Hello All.  I am here to desperately try to get a handle on my dear brother's tonsil cancer.  Unlike all of you, he cannot tell me exactly what he has.  I suppose his attitude is good, as he says, "What does it matter?"   He doesn't know the stage, but the tumor is T1 and it has gotten into his nodes, but he doesn't know how many.  Oh yes, it is HPV+.  First, should I be worried that he was diagnosed in early March but won't begin chemo/rad until the 27th of this month?  Can it spread ever further in that time?  I just don't understand the delay. Second, as soldiers in this terrible war, you are all qualified to tell me if I should lay off with my questions and information.  When I heard the news, I immediately went online to read as much as I could about the disease and the treatments and the side effects.  He and his wife refuse to read anything.  My brother's Radiologist told him that many people get through treatment without missing  hardly any work at all.  He then assumed he was going be able to go to work s usual.  When I told my sister-in-law that I read that many people can't go back to work for a couple of months after treatment is over she told me not to tell my brother that!  I am afraid he will be totally blindsided by how difficult this is going to be for him,  I feel it is best to prepare for the worse but hope and pray  for the best.  Am I wrong?  Finally a nurse did tell him he may miss a month or so of work and he said, "It feels like they are moving the goalpost on me,"  Yet he still is not reading up on anything.  Please advise,  Should I just keep my mouth shut?  I do realize that this is NOT about me, but him. I also realize that people all cope with things in their own way.   I just love him so much.  God bless all of you.  At some point I am going to direct my brother here.  I think it will be a great help to him.

Skiffin16's picture
Skiffin16
Posts: 8298
Joined: Sep 2009

First, it's actually probably better that he (or you) don't read the internet for research..., LOL.

I say that because there is so much miss information, it becomes hard sometimes to filter out what is good, and what is not so good info.

I'd say let him handle it his way, and figure out a long the way what works best for him. Reason being, if he is determined to work, or do as much for himself as he can, that's good..., but if people plant the seed that he won't be able to do something, I think it's counter productive, or negative..., which might cause hm to be less than he can be..., if you understand what I mean.

A lot also depends on what his job actually is...

If he is heavy into physical labor, then yes.., more than likely he's going to be limited... Treatment hits your body hard, throw in that for several months you are on limited calorie intake, forcing both calories and hydration..., you can only do so much. That's one of the hardest things for people to wrap their heads around. At times the head is telling you that you can do it, but the body says...ummmm no, I'm in charge and I have totally no energy.

If he's into something like I, 90%+ desk work, I'm an IT computer type..., then he might be able to work through it..., I did. Though I was allowed to work from home, connecting to work computers when I felt good and not on a particular demanding 9 - 5 time frame.

I got all work done and on time..., though it might be 2:00AM when I worked, and slept from 9 - 5, LOL...

You'll find and hear that we are all different, and we are...

Anyways, you have found an excellent site and source of support here...

Also, read the SuperThread, first post on this forum, it has litereally tons of excellent information and links there...

Best,

John

hwt's picture
hwt
Posts: 2330
Joined: Jun 2012

Sorry you had the need to find us. Your brother is lucky to have you. I too say stay away from the Internet. Know that your brother can survive this. He will certainly need you but best to let him do this his way. Let him know you are there for him and when needed offer to give his wife a break as caregiver for a few hours at a time. One of the best things my sisters did for me was to see that my husband got out of the house and away from his role as caretaker for a few hours at a time. You can read about side effects but he will only get some of them and can be in varying degrees. Sounds like he is approaching this as I did...take it as it comes and deal with it. Mid tx I was sleeping 20 out of every 24 hours so work was not an option for me. May 15th marked 1 year post tx for me. My scans have been cancer free. I also had lymph node involvement to start. It's a tough journey but doable. I did lose 65 pounds but have more energy today than I did before cancer. You might want to cook up some of your brother's favorites before he starts tx as a few extra pounds is a good thing going in.

God bless,

Candi (St Louis,MO) 

sin9775's picture
sin9775
Posts: 199
Joined: May 2013

Hi Candi.  Thank you for your response.  It is very good to hear that you actually have more energy now than you did before your cancer struck!  My biggest problem, I think, is that my brother and I do not live in the same state.  I cannot do those things you have suggested, and I think that is half of my problem.  I feel quite helpless to help in this whole situation.  I guess I have been known to mother him from time to time.  :-)  I did tell my sister-in-law that if (probably when) she needs a weekend "off" that I will come and be with my brother.  It is funny that you mentioned making his favorite food.  He tells me he is eating with abandon these last days before treatment.  He also said that when the doctor told him that they hope that he could maintain his weight his reply was, "Gee, I sort of thought that losing weight was one of the side benefits from all of this".  That made me smile.

I think that even more than my brother, I would like my sister-in-law to understand what the side effects could be.  I know for a fact that oftentimes caregivers don't understand just how debilitating treatment fatigue can be.  They think, just get out of bed and take a walk and you will feel better and they don't understand that if their loved one could get out of bed, THEY WOULD!  I think it is even harded to understand once treatments have stopped, but the fatigue hasn't.

Congratulations on being cancer free.  I will pray for your continued good health.

 

Shawn

sin9775's picture
sin9775
Posts: 199
Joined: May 2013

Thank you John, for your response.  I know what you are saying about the internet.  It did, however, get me here.  :-)  I have mostly kept to what I think are reliable sites, i.e., American Cancer Society, Mayo Clinic, etc.

Anyway, I will try my hardest to stop bombarding my brother with questions.  I don't want to discourage him in any way and I don't want to be the doomsday sister either.  I love his positive attitude.  He has a great faith and is putting this all in God's hands, but we are a very close family and my way of coping with this is knowing as much information as possible.  I guess I will just keep reading posts on this site for information that I may be able to share with him along the way.  I have already shared a few things with him and his wife. 

I will read the SuperThread next.  Thanks again.

 

Shawn

 

phrannie51's picture
phrannie51
Posts: 4701
Joined: Mar 2012

I can tell you that you have stumbled upon the best...the most informative....and the most supportive forum on the internet.  The folks here took me under their wings a year ago when I was diagnosed....scared and lost....and led me by the hand on getting through the treatment.

Most of us were diagnosed then had to wait weeks or months for treatment to begin.  I waited 6 or 7 weeks, so that isn't unusal at all.  SCC is a slow moving cancer and waiting doesn't seem to affect us much.  As far as work is concerened.....my biggest fear in the beginning was "will I be able to work through treatment".  I wasn't able to, but there were a number of folks who had been able to at least work through part of their treatment,  and a very few who like Skiffin worked all through treatment.  You hit the nail on the head when you say everyone copes with this their own way....that's both physically and emotionally.   I'm a little like your brother in that I don't want to hear every bad scenerio....I'm afraid sub-conciously I'd try to live up to it.  For me, I just put myself in the "one day at a time mode"....didn't start peering into the future, since that was too scary....once in that mode, I could take care of my needs....which are mainly nutrition and hydration, and LOTS of both every single day.

As was said before.....if you're going to do the internet, stick to sites like this.....where people are either going through treatment or have gone through.....this is where you'll get your best information.....  If you are able, do get your brother to sign up here....he'll never be alone in this.  There seems to always be someone awake and on line to answer questions.....to talk out fears....to offer support on a not so good day.  I can't tell you how many times I came here with a question, got an answer...and then took that answer back to my Oncologist...who'd say..."I didn't know that, lets try it"....things that worked to make me more comfortable.

Your brother is going to get through this rough patch of road in his life.  The word cancer itself is enough to put anybody into a fear frenzy, but he will enter this tunnel, and then start seeing the light at the end.....only to emerge, get his healing done and go on with his life....as one of our old members used to say "he's going to survive this, so get used to the idea"....Smile 

p

 

sin9775's picture
sin9775
Posts: 199
Joined: May 2013

Thank you, Phrannie.  I am relieved to know I don't have to worry about how long it is taking my brother to start his treatment.  I also am commtted now to keeping my concerns to myself, I know it will not help my brother any worrying about his big sister's emotional concerns over what he MAY have to go through.  I will definitely try to get him to this site, but I will not recommend that he check out that superthread.  Oh my gosh, I went there and read the list of 62 negative reactions to radiation.  I was sickened.  It truly upset my stomach!  So I am quite certain, after weighing what his response would be to getting a side-effect and being mad that he wasn't warned, to reading that list and having the poop scared out of him, that keeping the info to myself wins!  God bless you and every single one of the survivors on this site.  You will be what my brother needs going forward, as you KNOW what he is (will be) going through, I can only imagine.

 

~Shawn~

donfoo's picture
donfoo
Posts: 1728
Joined: Dec 2012

You have found a greatsite for support and accurate and real-life experience with HNC. As others have offered, it seems you can best be in a support role and be armed with the informmation you gather on your own and offer out suggestions as they articulate and experience specfic situations to which you have some options to make things better.

He will be like most and get his *** kicked with any of the common side effects to which he thought he was immune, then maybe reach out and seek more information to ease that sitiuation and find his sister does have some idea of what she is talking about and can help. Pushing info, advice, and suggestion on an unsolicited basis will likely not help much. Good luck, it is a tough trip but we all slog through and come out the other end; some standing and others crawling and badly beaten; each person has their unique plan. don

sin9775's picture
sin9775
Posts: 199
Joined: May 2013

Thank you, Don, for your input/incite.  It sounds like sound advice.  My brother is a big teddy bear with a heart of gold.  He is so kind and caring to others in need.  I pray his friends will be there for him when he needs it.  He is a big guy who has worked out for years and years.  I think he believes this is going to help him, and it very well may.  From what I have read though, the "Raging Bull" can take down a bear!  This is what concerns me most, that he believes he so strong, that he can whip this thing and then be brought down and fall into a deep dark depression which won't help him heal any at all.  I think that this is where all of you will help him!!

 

~Shawn~

phrannie51's picture
phrannie51
Posts: 4701
Joined: Mar 2012

that most of us have had aren't the extremes....those are possible, but not for most of us.  Generally, he will lose his saliva and suffer from dry mouth.....he will lose his sense of taste (for some of the folks food tastes funny, or bad.....for others it is simply tasteless).....the rads can burn the neck area....some have had very bad burns, for many of us we were able to control the burns with creams, lotions, and potions. 

There are a few things that are on the daily to do list for everybody.  Gets LOTS of hydration...water is what works best, milk adds hydration and nutrition in one fell swoop.....Get lots of nutrition....as much as he can take in (right now he should bulking up....tho his working out all these years will help him, that's a fact).  Swallow something every single day (if he ends up with a feeding tube).....he must keep his swallower swallowing.....and one that many of the Dr.'s never mention until a problem arises.....exerciseing the jaw, the tongue and the neck.....which can be done sitting in a chair watching TV.  That is opening and closing his mouth, swinging his tongue back and forth, stretching it, and turning his head from left to right, and nodding in the extreme to keep all these muscles supple....radiation has a way of hardening them.

Other side effects may or may not come about.....I didn't have mouth sores during radiaiton, but did get them during adjuvent chemo......I was still eating eggs with salsa 3 or 4 weeks into radiation.  Everybody gets their own varity of side effects as well as degrees of severity.

p

HelenBack
Posts: 86
Joined: Jan 2013

My husband has just 5 more radiation treatments to go. He has a similar (maybe same, even) diagnosis as your brother. I was all over the internet reading statistics, trials, everything! I spent many hours and many nights searching and now I never do. I would definitely advise you to stay off the internet like the others say. Really. I wish I could have that time back now, you know?

My husband wanted to know as little as possible and so I am sort of a filter for the info. I have been very prepared for every darned negative scenario that could come up and still am, but truthfully, we have been so lucky. My husband probably could have worked a lot more than he has, he's fortunate enough to have a job where he could just drop out for a while, but truthfully, except for chemo days and the few days following he probably could have worked (from home) untill just this week. So, everyone is different. 

If I were to give the most basic advice from our experience it would be: 

See a cancer-aware dentist first, although I'm guessing that step has happened by now.

Eat as much as possible at all times when possible. Hopefully, healthy, protein rich foods. Never miss an opportuntity to eat, while it's comfortable.

So far we have avoided thrush. I believe it to be because my husband takes a high quality acidopholus supplement. A few, actually.

He should set up appointments for regular iv fluids for week three and beyond. if the appointment aligns nicely with his rad appointments he'll be more likely to go.

Stool softener and/or laxitive is a must before chemo or pain meds.

My husband brings a thermal bottle of ice water to rads every day. he gets his whole mouth very cold before he gets the rads, in the dressing room. so far only one persistent sore and nothing else!

Don't skimp anti nausea meds or pain meds if he needs them 

We are using a cream on his neck, applied at night and right after rads called Miaderm. Seems to work the rad onc says his neck looks great. but i don't know if it's better than any other, but he should start now, and not wait for his neck to start burning.

We like a product, similar to boost and ensure but with higher quality ingredients called Orgain. I always have some on me in case we get stuck and we can't find food that my husband can get down. Amazon, Vitacost and Vitamin Shoppe all carry it and sometimes you can get the price down if you look around. A friend of ours generously ordered a bunch of cases and had them sent to us, really helped us a lot. Don't care for the mocha flavor:) 

The biggest barrier to eating for my husband is lingering nausea that he hasn't really fixed. We're gonna try the medical marijuana, hoping for some releif. Should be interesting...

Is he having chemo? If not, it will be easier, of course.

You are a good sister to look out for your brother. This is, as you've discovered, the best place to come for advice and support. 

It's hard to say if your brother and his wife would be better off being less or more informed. I'm the informed one in our marraige and I'm worrying all the time while my husband is the one suffering through the treaments blissfully unaware of how good he really has it.

Perhaps you could schedule a visit to help out toward the end of treatment? A cancercation?

Check in here for the good advice whenever you need it,

Helen

 

 

 

 

sin9775's picture
sin9775
Posts: 199
Joined: May 2013

Helen, thank you, thank you, thank you, for the very good tips.  I am very excited to share them with my brother.

 

Yes, he is also having chemo.  He is not having any surgery.  Did your husband?

 

I have a question about using creams.  I had read about a couple of good creams for his neck and I told my sister-in-law about them.  She said "they" told her NO CREAMS.  Did she misunderstand, or do they just mean no creams on his neck the day of the radiation treatments?

I can certainly understand the reasoning behind not bombarding my brother with all the possible side-effects, but I think my sister-in-law, as caregiver, should know about them all.  I can only assume (I guess I shouldn't assume anything) that you were/are the source of a lot of good care for your husband because you were somewhat prepared for what you encountered.

 

"Cancercation".  Funny. 

I hope your husband continues to have an easy time of it.  God bless.

 

~S~

phrannie51's picture
phrannie51
Posts: 4701
Joined: Mar 2012

all creams must be washed off right before radiation....then applied liberally after, and on thru the rest of the day.  I wonder if she might benefit from writing her questions down, and maybe having a third party write the answer down?  Especially yes and no questions?  I had both of my sisters at my first Oncology appointment, and my first Rad appointment......my husband and one sister at my ENT appointment.  It maybe that your brother is relying on his wife to understand all that is said, and she is still too shell shocked to be able to gather the information as it comes....and there IS a lot of information in the beginning, delivered in a new language.

p

HobbsDoggy
Posts: 213
Joined: Feb 2013

What we hear and what the medical people tell us are often two different things.  I found I had to stop thinking when the doctors were talking to me and start just listening.  I wanted everything to go smoother than it went and did side side swiped.  I finally started listening and getting information from people who had or where going though the treatment and things went better for me as I had a good idea what to expect.  Still I know that many people have few problems with side effects, seems the minority for sure.

Having someone willing to understand and take over the jobs i could not do during treatment was a huge help. 

My guess is they are not moving the goal posts, although it will seem like that often, as there is no exact path and clear side effect outcomes.

What I wanted from others was help when I asked for it and to sort be be left alone when I did not want help.  I was fairly to very selfish during treatment, don't think i could have done it any other way, that was just me.

i agree with others that you should be very careful about what you find on the Internet, but stay with very trusted sites and where people who have or are going though this.

Good luck and let us know how things go.

CivilMatt's picture
CivilMatt
Posts: 4542
Joined: May 2012

sin9775,

Welcome to the H&N forum, interesting reason for being here.

Too bad, but very understandable, your brothers position.  What will be will be.  Of course he could chose to be involved and direct some of the known side effects into manageable pains in the a _ _.

If you want and he agrees you could be his ghost patient (caregiver) here.  For many cancer patients all contact with us is through the caregiver. Just let him know there are many of us who have been in his shoes and if he has any questions ask away and if he is mad or scared and has  a few choice words, have at  it. 

Don’t beat yourself up, most of the time finding a caring sibling is rare (not unheard of). Stay upbeat and if things get tough just be there to help.  He will learn quickly how easy or hard treatments will be.

Best,

Matt

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