I've just read Lynn's husband's post and am so sad that I can't speak. That first wave of terror that hit me when Tom's diagnosis was put in front of us has returned and my stomach has turned to jello.
I have sent this site address to many family and friends, but I have not been able to really talk to them; you fabulous people here are the only ones who understand - - - everyone else seems to think, "Oh, it is only tonsil cancer." I certainly don't have it in me to explain the treatment/side effects/outcome possibilities.
Can't write any more because I can't see through very hot tears. I'm too new to have known Lynn, but this is still too hurtful.
I love each one of you and truly do take strength and courage from your messages.
Nicki
Nicki,
I know the exact feeling that you are talking about. If you go back and check you'll see a lot of "panic" posts from me. I hate that feeling. My prayers are with you and Thomas that his treatment will go as smoothly as possible. I too struggle with the posts regarding people who have lost the battle with this terrible diesese it breaks my heart. All the people on this site have really helped me to get through every day....
Love,
Dani
Hello Nicki,
You would have loved Lynn as much as we did. She was almost always the first one to offer her support, love and advice. It shocked many of us when she died. I don't think many members knew she was as sick as she was. I do take some comfort in knowing Lynn suffers no more. I don't know what else to do. This happens every time we lose a member to this bastard of a diaease. I have been a member for just over a year and I have met some wonderful people. Oral Cancer needs attention, I'm sick of hearing fund raisers for Breast, Prostate and lung cancer. It's time we get some funding to allow this site to get the word out, "EARLY DETECTION". The grassroots plan is now taking shape and anyone who wants to help can sigh up. If I can save one person from going thru what I've been through I will consider my action a success.
I have a photo of Lynn that will be in the album I am bringing to Vegas. I will attach it to a reguler email and send it to you.
Remember you can vent here anytime, we all have at one time or another.
Your Friend, Danny Boy
Nicki, I am sure the impact of knowing someone losing his/her battle after fighting courageously is very traumatic on the caregivers and patients still under treatment. Tonsil cancer is very rare in Hong Kong and people around have little knowledge about it. They also comforted me by saying that it is a relatively treatable cancer compared to lung or liver. I don't know why they have such concept because I know tonsil cancer can be fatal too especially I am at a stage 4b. But I just write now not to scare you more but to give you support and hope. I am one of the survivors who made through the ordeal and am having a new normal for 3 years. Back to my previous full time job and travelling around.It is inevitable that we will hear sad news on this forum from time to time but it is important that we balance ourselves with a more positive attitude and overcome ourselves with higher spirits. Ventilation is essential but don't let your fear and worry dominate the family for too long.As a 'senior' member of the tonsil family, I am ready to give you my full support and if you wish, you can email me anytime for questions. My best wishes to you and Thomas.
Karen
Dear Nicki
I understand how powerless you must feel. Many subscribers to this board say that cancer can be worse for the carer than the patient. It is sad to think of Lynn's family without her but she is now at peace and has left a wonderful legacy of love.
Our journeys are all different but in my case I found acceptance was the key issue. Once I embraced cancer as a part of my life I knew I could deal with it and my attitude became positive. Being totally informed and in control of my treatment was a large part of that.
Best wishes and love to you both, from Helen
Nicki, Don't let this disease get to you. Tom is a fighter. I remember your first post when you described his initial attitude. Postitive, upbeat, tough, and looking forward to fighting this and winning. He will win. And you will help him to that goal. His treatment plan is the most effective in the medical arsenal as it is known today. Remember that a positive attitude is part of the tools needed to fight this thing. You and Tom are doing a splendid job, just keep it up and don't worry about it. The Lord will take care of you both. Have faith and take it one day at a time. It gets better.
Danny Boy, you are sooooooooo right! Oral Cancer needs attention!!! When I think of all the time that is wasted with antibiotics, keeping an eye on it, it's not cancer...you don't smoke, etc. etc...it makes me want to scream! Early Detection....PLEASE!! Save some of the pain and suffering of this horrible disease, it is heartbreaking! Sorry, had to get that out..Love, Carol
Nike- Lynn's story affected me too. When I read how young some of the posters here are it breaks my heart. I was another one who didn't smoke and went through the antibiotics and slow diagnoses because I didn't fit the profile. Early detection and awareness is an important key for a future of survival. JOIN OCF as a member! We need to get the public service announcements out and the information cards for dentists made and distributed! As you send emails about this site to your friends and families tell them that joining now and helping get the word out helps make some sense of the "why me?" At least this way we can all help those coming behind us to get a shot at survival! - Kris
Well spoken Kris,
Danny Boy
Nicki,
It's ok to be scared. Fear is a part of the experience, but fortunately fear can be managed. And it's ok to be angry. This disease sucks! Go ahead and shout it out: THIS DISEASE SUCKS! Unfortunately, most folks don't know much, if anything about it. Even more unfortunately, there are some folks (like EVH) out there that could have done and could still do alot to get the word out, but they choose to pretend nothing happened. Be that as it may, don't let other people's ignorance get you down. We're here for you and take heart that Tom has a solid treatment plan and a good attitude.
-Brett
hey there Nicki,
my recall sometimes is short. to refresh things i used the 'search' feature (which is at the top of the page). key word 'Lynn'. it returned many posting from Lynn, and i read several of them again. she was a very special person and her character comes thru clearly in the email she sent. i think reading her posts can calm many fears.
best wishes,
larryb
Nicki -
It surprised me how little "outsiders" could understand what I was going through. Everyone here always says "welcome to the club no one wants to join", but it certainly is a club and thank God (or whomever) we're here for one another.
I was no exception to the shock and sadness felt from Lynn's passing. The frustration certainly continues to build with each new diagnoses. All I can offer you is my love and support. It is a hard road, and it certainly could be more enjoyable, but you will get to the end of this road. Just think - once you're there, there will be many side roads to take for the rest of your lives.
Wishing you and Tom well,
Sabrina
It has been a beautiful day here in Virginia, and Tom improved much today. We just came in from our evening prayers - and watering the BOOMING pink roses! I like to think that each bloom is a new prayer for all of you here.
Thank you for the 'pep talks!' Danny, thank you for Lynn's photo - it helped a lot because I focus so much better when I can 'see.' Larry, I took your advice and did a search for 'Lynn,' and I can read that she was a strong woman with a lot to give. I am finding my way around this amazing website slowly but surely - - and discovering so much important information along the way. Whoever is responsible for designing this site should win an award!
It is interesting that I seem to make it through my 'normal' day pretty well, and although Tom is never out of my mind, I can focus pretty well on my work until someone asks me "How is he doing?"
I do, honestly, keep very upbeat, and I try very hard to impress on anyone who will listen how important it is to be ever watchful for changes in their mouths, throat, neck.....
I was, I guess, noticeably disturbed the morning after I read about Lynn's passing. A friend asked what was wrong, and I said how devastatingly horrible it was to think that so young a woman would die from this - and that it scared me for all of you - and for Tom. She suggested that I NOT VISIT THIS SITE. I promptly told her that this site has become my lifeline and a pillar of my support system
Couldn't leave you all if I tried! And this after only 'knowing' you all for a month!
BTW - I found an herbal sleep aid that is wonderful! Called Deep Sleep.....what a relief! I've actually been able to sleep for more than 2 hours at a time!!
Love and prayers for all of you.
Nicki
Nicki,
As the "culprit" of conveying the news of Lynn's passing I have to admit it was one of the tougher tasks I can remember in my 48+ years of life. All of us have joined OCF at the time of someone passing. There have been many in the past year for me and I feel like a piece of my heart is ripped out with each one. In the case of Lynn it was very hard partly because I had spoken with her on the phone, emailed/private messaged her often and met all of her family. At her services I fully realized the greatness she humbly achieved in this life and the glory ahead of her as her just reward. When we all met for lunch during the last weeks I saw the sadness in her oldest daughter's eyes and remembered Lynn saying how much time she spent away from her family while she was at MD Anderson and how she would not leave them this time.
You will experience many emotions on this wild ride you have embarked on. Do not waste a single moment worrying if you can. Enjoy every day to the fullest because you will never have that day to live over (unless you are Bill Murray in Groundhog Day).
The absolute greatest thing about this website and especially this forum is that all of us have the strongest bond I have ever experienced. Just as DaniJams and Sabrina expressed, WE HAVE BEEN THERE (and back!). It is so wonderful to be able to ask someone if they, too, are experiencing something so quirky that you are embarassed to ask the doctor. I think of Sabrina's quiver in her liver (or butt, as the case may be) here
but you can substitute many things in place of that event. Almost all of us have either had someone like you by our side or been someone like you by a loved one's side.
I hope we can all do something to help you and Tom through this.
And by the way, this site has won an award, thanks to Brian!
Ed
Thanks, Ed. How sorry I am that Tom and I can't be in Las Vegas to meet all of you. He HAD actually planned to take us there for our Sept. 11th anniversary (33 years
), but this stuff got in the way. I've never been - he goes in January for the Builder's Assn. trade show - and he thinks I'd get a kick out of hotel architecture/design.
What date will you all be there? Which hotel?
This has been a better day for Tom, although he has a big question for all of you - - is the radiation treatment going to make him nauseous - or just ruin his throat? His system is not handling the chemo drugs very well and he seems to be in a perpetual state of
'ready to vomit.' He's getting apprehensive about what to expect when the radiation begins next week. He's also not sure he wants to know!
(I KNEW this was a good website!
)
Nicki
Hi Nicki,
If you haven't emailed me a photo of Tom & You , could you please? You can attach it to an email and I will include it in the photo album of those who can't make the reunion. The dates are Sept 25th & 26th at the Imperial palace in Las Vages.
If you sent a photo already please forgive me, This chemo is not helping my memory at all.
Your friend has no idea how important this website is to us. The value it offers is immeasurable!! It is that HUGE to us. To be able to relate to people going thru the same thing as you is so different than talking to friends and relatives.
Without knowing it you have become a valauble member of this forum. Your honesty and caring shine through in your postings.
We are lucky to have you as a member.
Best Wishes to you & Tom.
Danny Boy
[email protected]
Hi Nicki, I can relate to being in a state of "ready to vomit." I've been there all week after my chemo treatment on Monday. It's just now subsiding today... It seems like I actually do better when I can get something on my stomach, but then there's the challenge -- getting something down in the first place...
Anyway, the radiation is pretty rough for most if they do it to the mouth, but it's not undoable. A lot of us, including me, have been through it and have lived to tell about it. I was eating pretty normally a couple months after I was done... Fortunately, the effects don't come on you right at first and you have a few weeks (usually) to "belly up to the buffet" and get in good nutrition before it gets too rough...
Make sure to get paid meds lined up ahead of time (before Tom needs them) and as soon as he starts taking any of them, take countermeasures for constipation -- that was actually one of the toughest things for me. I've never whimpered more in my life than a couple of instances in December and January when the system got stopped up... Whew... IT could have been prevented if someone would have told me to stay on top of it...
We're always here if you need it... Best wishes to you both!!
Nickie,
I know everyone is different but I think the consensus is that radiation is very tolerable until the latter part of treatment. In my case, the last two weeks and several months afterwards were the pits. A general rule is one month of recovery for each week of radiation. Chemo seems to hit hard and first and not last long. I don't feel the Cisplatin was as bad as my other (5FU). I'm afraid I can't help on the nausea since I never found the right combination even though I tried about everything known to man. I did not mix the emetics with steroids since I usually have a very bad reaction to dexamethasone. I was told the combination would prevent all of my nausea.
This will be my first trip to Vegas and I am looking forward to it.
Ed
Nicki,
Heather had plenty of nausea, but NOT from the radiation. I don't think Tom has to worry too much about that.
Since AzTarHeel mentioned it, I would like to add a side note on the constipation issue. Heather also had a lot of trouble, probably more than most because being bedridden for so long, she couldn't get even a modicum of exercise to help keep things moving.
Anyway, you have to discard the normal advice about laxatives being potentially harmful if taken for too long. Finally, after months of trouble, a pharmacist told me the key was to take Senekot-S DAILY. In Heather's case, TWICE DAILY. Don't be like me and think that after a few good days, you should give your body a rest and skip a day or two. The constipation comes back with a vengeance!
The Senekot-S or similar remedies
MUST be taken
EVERY day, WITHOUT FAIL! Of course, with a prescription med, one must follow the instructions. But as long as you are on a heavy duty pain med daily, you must also take an anti-constipation measure DAILY.
Rainbows & hugs,
Rosie
Senakot is really a natural stool softner versus a laxative and I don't believe it would be harmful like some of the more violent stuff like epsom salts that just flushes the entire system out and takes all of the fluids with it.
I took Senakot S 2 pills twice a day after "giving birth" one day. Even the slightest hint of constipation still and I take 2 a day or 2 at once. Anything that hurt as bad as that one memorable day will be avoided the rest of the days of my life...so help me God!
Thanks for reminding me Rosie!
Ed
Ed,
You're welcome!
:p
Rosie
By the way, I just used Senekot-S as an example. You're right, it isn't harsh like laxatives and some other remedies. But even the harsher remedies need to be taken daily in most cases. Like many others have said, if you don't keep on top of it, the constipation can be brutal. And it also affects so many other things. When Heather got in bad shape, the constipation affected her digestion in general.
Of course, she had mega-problems with her PEG tube anyway, but when her bowels didn't move, anything that was put in the tube couldn't get through her intestines either. It literally backed up into her stomach. Obviously, her case was more severe than most, but severe constipation is nothing to fool around with. Find a remedy that works and then use it daily. The possible damage from the laxatives is probably less harsh than the damage that can be caused by the constipation.
Rosie
Rosie
Hi Nicki,
I had radiation in December (but no chemo).
Nausea was minor, the soreness to the throat began after a couple of weeks - that seemed to be the hardest part, making it difficult to eat or swallow, so try to "stock up" on calories now if he can with milkshakes, whip cream, etc!
Also fatigue is a major problem. His job now is to fight the cancer, so try to get lots of rest and don't plan on doing much.
Good luck and hope things get better after chemo & radiation!
michelle
ps Not everyone has trouble with constipation, maybe he will be one of the lucky ones as I was (Sometimes with all this you forget to think about what does go right!)
Oh! You all are great! You make me laugh, and I am able to fill Tom in with a smile on my face and a positive attitude. Actually, it makes it so much easier to bring him up to speed on what to expect by reading your posts....instead of things out of a book.
I'm keeping copies of these most important 'tips' in our treatment notebook for quick reference!
Danny, I'll re-send a photo, because I can never tell if things are delivered. It is a pix of Tom and me with a grandbaby
We are focusing our prayers tonight for Don and Karen, and again, you will all be included.
We love you!
Nicki
Guess I'd best go watch my Redskins play! We've got Joe back, and this MIGHT be a really fun season - esp. with Tom's new TV!
Nicki,
I am lazy today so help me out. Did Tom create a Prayer Garden...is he a landscaper? If so, I would love to see the Prayer Garden and maybe even honored to (attempt to) duplicate it or copy it.
Thanks, and Go JOE!!
Ed
Ed,
You can be lazy
It is sometimes a good thing!
Yes, my Thomas is a most talented landscaper who owns a landscape contracting company in the Manassas, VA area. We live on 30 acres, with about 3 of them in lawn/garden status. He's amazing, and even though our house has gotten a bit large for the 2 of us (our 3 children are almost all grown and gone), I can't imagine leaving the little bit of heaven he has created here.
The Prayer Garden is still in its infancy, but it is lovely already. I'll grab his digital tomorrow if the weather is nice and get some shots for you
3 down/32 to go on the rad treatments! (Sounds like it's time to for the end zone pass, don't you think?) Gee, that reminds me that the office football pool has begun, and I haven't had the time to see who looks good/bad! Can't win any money that way!
Now if I was to make it to Vegas.........
I realize everyone from this group who get there is already blessed, but I'll hope they are all LUCKY, too!
Nicki
Nicki, Sorry to be so long in getting to your post. Hurricane Frances and now Ivan are interferring with my plans and schedules. Tom is different than I, but our cancer is very similar so my experience may be similar. The radiation was the hardest of all of the treatments because it was so long and continuous. At first it was a breeze, then difficult, then a pain, then brutal. By the end, my neck was bleeding outside (treated with a with cream-like stuff)and mucous was so thick inside that it caused periodic vomiting. Swallowing was out of the question and my only nutrition and medicine intake was through the peg. Within 3 weeks after rad ended, though, things got better and it has improved weekly since then. My rad doctor told me 2 years before all of the side effects were gone or as close to gone as they were going to be. So be patient, it will get better and better after treatment ends. During treatment, it gets worse and worse, but after treatment it gets better. He will need all of your help and understanding as rad is even worse than the tonsilectomy. You both are in my prayers, as always.
Hi Kirk, saw your posting on the Charley, and Frances. My son is a lineman w/City of Wilson and
right now is in Gainesville tring to help those people. Don't know if they will pull him back because of Ivan. We really feel bad for those people down in Fl. My son said it would be a long time for everything to be back to normal or anything close. Lots of prayers for everyone.
Joan, thanks for the prayers. We need all we can get after 3 hurricanes hitting the state in a couple of months, what with Bonnie, Charlie, and Frances, and Ivan on the way. Hopefully, this will be the end of the storms for this year. It's getting very boring.
Nicki!
I'm sorry about the return DX. I can't even imagine what you and he are going through.
I don't know much about anything here, but wanted to say my prayers are with all of you.