Hello All,

Just wanted to vent a little. Went to oncologist yesterday to get results of new CT. In the same area as before there is a new growth. Dr. said he does not know what it is. We see specialist next week. Will read x-rays and probably do a scope. Will probably order a biopsy, and then what? My father has not had anything, anything by mouth in over a year. Underwent Chemo, Radiation, and HBO, apparently all to no avail. I would read this website and come back with so much hope, and try to pass it on to him. But now what? He said last night that he doesn't want to go through all that again. And who can blame him? He's no longer living, just existing. Imagine if you can, eating 3 meals by tube. Mouth so dry, but you can't even swallow a sip of water. All he can do, is spray a small amount of water in mouth. I don't know what to do or say anymore. He's scared, I'm scared. I just want time to break down, but there is no time. Thanks for listening.


VickieM

Vickie
Vent all you like thats what we are here for, I wish we had a magic wand to wave when it all takes a step back, so Vickie do what you can when you can... no one can do anymore.. prayers to you both..
Sunshine...love and hugs
Helen

Vickie,

You and your father have my good prayers and wishes.

Sabrina

Hi Vickie, I don't have adequate words to comfort you, but please know I am praying for both you and your Dad...Love, Carol

Vickie, Sorry to hear your news, but remember, until they do the tests, you don't know it is really cancer. Meanwhile, I'll pray for your father, you, and the rest of your family. Hopefully, it won't be cancer and everything will be alright. Also, venting here is one of the major benefits of this site. Vent away.

Vickie,

I am sorry to hear your news and it sounds like both of you are just worn out from it all. Not knowing your father's circumstances, I just wish there was something they could do to help ease the pain in his throat at least. It seems while we go through this, we get caught in this vicious circle. We need nourishment and especially water to keep the body going in the right direction. The throat (and mouth) gets so dry that it hurts to swallow. It hurst so bad we can't swallow anything and it just continues in this way. I know it sounds easy but water at least down the throat helps and the hydration helps and then some pain will diminish and at least a liquid diet is tolerable. Without some type of swallowing, it just gets worse and the throat muscles stop working correctly for swallowing.

I also hope there was no sign of anything questionable before the did the HBO treatments. Surely, the docs know that.

Try to at least get a few minutes away from it all for yourself. I will be praying for both of you and for guidance for the medical team to find the best course possible for you father.

Ed

Vicki,

Has your father tried drinking Aloe Vera.
Marcy was only using her feeding tube toward the end and then someone had her try drinking aloe vera, it was like a miracle for her. For awhile she was able to get a few things down and it soothed her throat.
Bless you,
Michelle

Hi Vicki,
I feel so bad for your father after reading your post. I remember having moments of fear a few weeks after radiation that I would never be able to eat again. It scared me alot. I wish I had some advice for his eating but I don't.
I hope there is not a new tumor and that you report back to us in a few weeks with some good news.
Just to give another opinion to offset Eds comment on the HBO Treatment. I asked my doctors numerous times if there was any risk to having the HBO treatments and they all assured me that there are NO studies that show the extra oxygen "feeds" cancer and gives you a recurrence. I also asked these same questions to the people on this board. The way I ended up looking at it was that if the cancer was there then it was going to eventually come out regardless of HBO treatment or not.
Keep us posted and vent here anytime you need to.
Minnie

Just so we are clear, it is my understanding that Hyperbaric Oxygen (HBO) treatments are NOT to treat cancer. Instead they are an attempt to relieve treatment side effects.

Vicky, I feel your pain (and your fathers) but I still work a 9 hour day, raise 3 children, sing in the choir, volunteer for too much stuff. I have eating challenges, pains and aches, I exist and I live. If you can get out of bed you are better off than many many people.

Take care

Oops, I am now asking, "did I actually say that out loud?" I was more asking if there is any connection with HBO and known cancer cells. I have heard both and am still confused as to whether the HBO treatments affect active cancer just as I am still confused about ultrasound and active cancer. Anybody have any concrete answers to either?

Ed

To Everyone,

Thanks for all your responses and prayers. And KirkGeorgia, you are right, we don't know what it is. As far as the CT goes, he had one in March and all was well. Started the HBO in May, did 40 treatments. The hope was that the HBO would promote the growth of healthy tissue where the original tumor was. Not having a medical background, what I was lead to believe, was that after the radiation and chemo,there was something like a crater where the original tumor was. That area was not healing, hence the HBO. Not sure the treatments did much of anything. Gosh are they expensive. At almost $2000 per treatment, I would hope for something. But then again, medicine is not an exact science. Thankfully, we were able to COBRA his insurance until May 2005. As far as the aloe vera drink, not an option. He cannot swallow. I was all set to tell the doctors that we needed to start working on the swallowing. Re-read replies from this site regarding that issue. Was ready to discuss possibility of placing tubes in his ears, with the hopes to lessen the pain throughout this head and ear. Wanted to discuss with doctor, swallowing test and speech therapy. Was hoping to talk about stretching his esophogus. Anything to aid with his ability to eat and drink by mouth. But then this. He is only 63, but we started his Social Security last December. Yesterday, I began the process on-line of applying for disability. Boy what a chore that was. Does anyone know, if he is accepted for disability, does he automatically get qualified for medicare? Sorry this post seems to go on and on, and in all directions. I feel much better outlook wise today as opposed to yesterday, and it's all thanks to you. You will never know how much you have helped. I pray that someday the big "C" will go the way of Polio. Thanks so much and God Bless You All.


VickieM

Also forgot to mention, after HBO treatments ended (3 days to be exact), lower right jaw area became swollen and infected. There also was an odor coming from his mouth. Was put on antibiotics for 2 weeks afterward. Infection has since cleared up.


VickieM

Vickie -- you and your father are surely going through a lot... My prayers will be with you both... Ask away anything you want and feel free to come here and vent anytime... There are plenty of sturdy, understanding shoulders here...

Blessings to you both...

Hi Vickie,

I'm sorry your dad, and you, have been through the ringer. Hopefully things will start to look up. You mentioned in your note about putting tubes in his ears. My experience (I had total glossectomy, right and left neck dissection) was that right after rad treatments ended (Nov. 2003) I had severe pain in my ears. The pain was constant and was intensified by a piercing, shooting pain from my jaw right up to my right ear. Went to see my ENT and turned out I had an infection in both ears. Tried a dose of antibiotics but that didn't help. Ended up having tubes placed in both ears the day before Thanksgiving. Although not a comfortable experience having them placed inside of already infected ears, they sure did the trick! I still experienced (and sometimes still do) the shooting pain in my jaw to my ear but that has pretty much gone away. I also still have constant ringing / humming in my ears but that I can live with - I just wish it would play a different tune! Well I just wanted to chime in that I did have the tubes placed in my ears and they're still in place. Doc says they should fall out naturally and then we'll take it from there.

Tell your dad to hang in there and take care of yourself too.

Nancy

Vickie,

I would recommend you go to the social security office and ask some very specific questions regarding benefits. You mention you started his social security in December. Assuming you took the option of getting social security retirement, his benefits would have been reduced by as much as 25%-30% because he was not 65. However, if you really applied for social security disability insurance, your father would have received a higher amount which would be equal to retirement at 65. The stipulation is that the disability either lasted for at least a year or was expected to last at least a year. Supplemental security income, on the other hand, is based on financial need and would be in addition to disability insurance.

You asked about medicare being automatic with disability. Medicare is typically given after two years of disability. If the doctor states that he/she does not believe the patient will ever recover (i.e. terminal diagnosis) there are exceptions. Usually state programs kick in sooner but are often limited to not owning a house or other assets.

Applying for benefits on-line is sometimes more difficult than going in person and asking all the questions you need during the process. It sounds like your father filed for early retirement and has reduced benefits and if this is the case, you want to lobby hard to get his status changed over to disabled.

When trying to qualify/sign up for disability, it can be especially trying and three are so many things to take into consideration. There may be a social worker available where your father is receiving his medical care and they may be able to help you navigate the maze. I hate to give you specific answers as I am not familiar with the particulars surrounding your father.

I hope this helps you somewhat.

Ed

Vickie-
I feel like I am reading my life story when you write. Don, my husband, was on the feeding tube for 6 months and at one point they told him they thought he had nerve damage in his throat (preventing him from being able to swallow) and may have to have it for life. I think we've talked about this in private emails. My husband and I were both in a state of shock coming home from that doctor's appointment (my husband is only 46). I'm not sure what happened but the next few days seemed to take on a whole new attitude and he just kept trying over and over to eat...he got "mad" and "determined"...the next thing he knew he was able to swallow and can now eat things as long as they have lots of sauce. Don also had the problem where everything hurt in his mouth...even water. He has the herpes virus in his system (before cancer it was just feverblisters) and it attacked the inside of his mouth since that area is so vulnerable now. Fortunately the doctors figured it out and he takes medication daily that prevent any sores from appearing on his tongue. Don also has 50% hearing loss from radiation damage to the nerves in his ear (side the tumor was on) and has eustachian tube damage. This causes pain at times, used to be severe. Now it mostly just causes constant ringing...from the nerve damage...and popping/crackling noises...from the eustuchian tube damage. Believe it or not there have been some studies that show anti-anxiety medications can help reduce the ringing in the ears. Because all these complications can also cause so much stress and depression, my husband agreed to try the medication. His primary care doctor put him on 2 medications and though he's only been on them for one week it does seem that the ringing is reduced. I'm not sure if it is just that he is relaxed and not concentrating on it so much or if the meds actually reduced the ringing...either way it doesn't matter, if the ringing is lessened that is the important thing. From what I hear it is common for cancer patients to get depressed, who wouldn't be after all that is going on in their bodies, and doctors do not mind giving them meds that can help improve their outlook on life...this helps everything from healing to just the will to live and get out there and participate in life. We have discovered this has truly been the case for my husband. Today, 1 year from his tonsilectomy that discovered the cancer, he completed his first day back at work. It is amazing how much better he looked when he walked through the door after working all day...it is good for him to feel like he is finally being a productive human being and contributing to society and our household.

Sorry for rambling so much...you are both in my prayers. Don't forget that taking care of "you" is an important part of your father's recovery too.

Lorie

To All,

Thanks again for all the responses. Ed, thanks for the information regarding Social Security. As I mentioned in my last post, I applied for disability for my dad over the internet. Quite a long drawn application. Anyway, I had to print a signature page and 15 copies of a form to release medical records. I was then instructed to bring in the signed forms to my local Social Security Office. After taking a number and waiting my turn. I was told that they couldn't download the info from the net, due to computer problems nationwide that week. Was told to make an appointment. I really wanted to get this thing done now. So I decided to wait to speak with someone. Was told it would be awhile, since I did not have an appointment. I went home, since I only live 5 minutes away. I grabbed every medical folder I have on file. All of you know how much paper work in generated by this disease. I put all the folders in a huge box and returned to Social Security. There I sat all afternoon with this big box on my lap. Finally, after 4 hours, my turn. The woman has helpful. I was so happy that I had my box of info. Had to refer back often. She also spoke to my father by phone to complete the application. So glad that the application process is at least started. Lorie, thanks for your reply also. A little hope and inspiration go a long way. I wanted to talk to the doctors about the tubes for the ear, but then the last CT happened. I will just postpone that conversation to a later date. Will post update after Wednesday's doctor's appointment. Thanks again and God Bless!!!


VickieM