My story Info welcome and appreciated

GRAVEY

Sept, 08, I noticed a lump on the right side of my neck, at the time I had been sick a lot, I have a daughter who attended day care and daddy always got what she brought home. But after about 2 months, and the lump still existed, I had suspicions that this was more than just a swollen lymph node from being sick.
I went to my primary, who's opinion was,"It obviously isnt supposed to be that way so lets take it out" which I too agreed with, so off I went to the referred ENT. He examined me and we verbally agreed that he would remove it. I had the surgery in February of 09, and after 2 weeks went back to work. I received a call from the ENT saying that the results from the tests on the mass were negative for cancer and so I thought that was the end.
A month passed, and I noticed that the swelling in my neck was still there. I, through the first month, just chalked the swelling up to scar tissue, but after it was still the same size after a month, I went back to the ENT. He excused it away as scar tissue, and said come back in Oct(09) and if its still there, we'll look at it again. Problem was, although we had a verbal agreement, the Doctor only biopsied the mass, he didnt remove it like we had agreed. I knew this was the case because I know my body, and after touching that spot on my neck for 4 months I knew what it was, and what it wasnt. So, unsatisfied, I returned to my Primary Care Physician for a referral to a different ENT. He agreed the mass seemed more than scar tissue and gave me another referral.
My new ENT happened to be my daughters ENT who had removed her adenoids and had put tubes in her ears as she had lots of probs at an early age with getting sick. He is a great ENT so I was pleased when he agreed that the mass seemed to be a mass and not scar tissue, and that he would be more than happy to remove it.
So, had the surgery, he removed the ENTIRE mass, but this test result came back Positive for Squamous Cell Carcinoma, and it was a lymph node he removed, not just a cyst. He did say that while he was in there, he saw no other areas affected, but that there had to be a primary source of the cancer, so he wanted to do a biopsy of my throat tongue and tonsils to check that area next.
He had taken my case to a Cancer board for review, especially because I was only 35, and came back and said he actually wanted to go ahead and remove my tonsils, which I was not thrilled about, but hey, if that turned out to be the primary source, we would be in business. So I went to have the surgery, and when I awoke, I was suprised because I didnt have any pain in my throat. Turned out that when he went in, he looked around first, and immediately found a spot at the base of my tongue. He said it was a T1 lesion, and did not want to cut it out because of the affects it would have on my speech and eating. He said Radiation and Chemo were his suggestions, and I was happy at the time for that diagnosis because I really didnt want to lose any of my tongue as well.
Flash forward, I started my Chemo in November of 09, and Radiation soon their after, 3 Cisplatin treatments and 35 radiation treatments. Sorry, forgot to mention I had a port implanted for the chemo treatments, and a peg for tube feeding depending on how affected my mouth was. I was sick for about a week after each chemo treatment, the second day after my first chemo treatment I woke up with noticeably affected hearing loss. High pitched ringing and muffled hearing. I was sick for about a week after each chemo treatment, but was able to get back to normal eating soon their after, and I even could eat during my radiation treatments until around week 5. I stopped eating regular food all together, and started tube feeding. I hate tube feeding with a passion.
I slept for the entire first week after my last radiation treatment on Dec 17th, and to this day, January 11th, am experiencing some nausea feelings. I didnt expect the radiation to make me nauseated, but their was a lot my docs didnt tell me relating to side affects. I also have this weird temperature thing where when Im up, Im freezing(its also around 30 degrees outside right now) But when Im sleeping, I absolutely burn up, I could be fully clothed, or just in my boxers, and Im still tossing and turning burning up in bed. I dont sweat, I am just as hot as you can imagine.
I am drinking boost plus for my nutrition, I refuse to feed through the tube. I was trying when I first finished my radiation, but the problem was I felt sick all the time and was exhausted, so I would feed and go lay right back down, which is the exact wrong thing to do, because the tube feed would begin to rise back up all the way into my throat and mouth because it had not been digested. This would in turn cause me to throw up. My gag reflex was like a hair trigger. I still have occasional nausea feelings, but I am taking Zofran and wear the transderm patch behind the ear to battle the nausea.
I must take time to mention that my wife through this whole ordeal has been a true God send. I love her with all my heart, she has definitely taken her wedding vows seriously, especially the in sickness and in health part. I am truly blessed with such a strong, loving, attentive, understanding, caring woman. If it werent for her, I would truly have been lost.
I will end this for now, but I have several other things to mention. I figure this is enough to get you started on me though.

Gravey

Kent Cass

Your experience
Gravey- Does sound like your first Oto/ENT didn't have a clue. And, that your second Oto had a good plan.

I, also, had nothing removed. My chemo was via Cisplatin and Flourouracil pumps for 4 days, twice. Seems to have killed all the C in me. Shrunk my two neck tumors into nothing, other than scar tissue bumps that are very small, and have not changed in size.

Temp thing is likely the thyroid. Most of us have become colder people! I had no burning-up experience.

I got all my nutrition via my feeding tube for a good seven weeks of 4.0 formula. And, yes, the digestive physics are such that laying-down can lead to problems, which a recliner helped me with. I didn't like that kinda feeding- but it was much better than trying to eat the regular way for me.

Hope your treatment, with specifics I would be interested in hearing of, does get all the C out of your body.

Believe.

kcass

GRAVEY

Kent Cass said:

Your experience
Gravey- Does sound like your first Oto/ENT didn't have a clue. And, that your second Oto had a good plan.

I, also, had nothing removed. My chemo was via Cisplatin and Flourouracil pumps for 4 days, twice. Seems to have killed all the C in me. Shrunk my two neck tumors into nothing, other than scar tissue bumps that are very small, and have not changed in size.

Temp thing is likely the thyroid. Most of us have become colder people! I had no burning-up experience.

I got all my nutrition via my feeding tube for a good seven weeks of 4.0 formula. And, yes, the digestive physics are such that laying-down can lead to problems, which a recliner helped me with. I didn't like that kinda feeding- but it was much better than trying to eat the regular way for me.

Hope your treatment, with specifics I would be interested in hearing of, does get all the C out of your body.

Believe.

kcass

Hi Kent and thanks for the
Hi Kent and thanks for the info, I never thought of my thyroid before, I didnt really think of anything, I really didnt know what to think. It is really making it difficult to sleep. I should have known though that even though they say it doesnt, those radiation beams pass through some vital things on their way to the target, and probably screwed up a lot of things. It has definitely affected my brain, because for the first week after my last radiation treatment I did nothing but sleep and had some of the most crazy psycho dreams I have ever had.
I dont have any saliva and am taking Saligen, it helps for the most part, their are certain times that even though Im taking it, my mouth and throat still get dry. When I do sleep at night, I have to sleep with my mouth closed because after about the 5th breath with my mouth open, my throat and mouth feel like the bark off a log.
I do feel considerably blessed though because, even though Im only 3 1/2 weeks past my last radiation treatment, I do have some taste, I can taste the boost that I drink, vanilla, I probably have about 15 to 20% of my taste buds. I can eat blueberries, I like blackberry yogurt, my Mom got me the Ninja (as seen on TV) its a machine that makes like smoothies, etc, I havent tried it yet, but it should come in handy. I can eat pretty much anything as long as it's soft and wet.
I just hope to God this has worked. That obviously is my biggest fear, as Im sure it is of everyone. I just couldnt imagine having to do this again, or worse having to have my tongue cut out, not the thought a 36 year old wants to have. My oncologist has assured me from the beginning thought that these treatments were for curing me, period. And I find solace in her words. I believe her.
Again, thanks for the information, I wonder when they will allow me to get my feeding tube removed and my chemo port? I think I would have less stomach and nausea issues if it were gone. I know my stomach doesnt like it being in their, when I get hungry, my stomach immediately lets me know it by "burping" my feeding tube. I call it that but it does this weird contracting thing, it is so annoying. Oh well, we'll see.

GRAVEY

Scambuster

Detox
HI Gravey,

Sound like you had a pretty standard awful experience with your RT and Chemo.

Post treatment can be tough and you need to be patient and measure your improvements by the 'week', not the day, as your condition may bounce up and down for a few weeks. Feeling cold seems standard post treatment. I was wearing long thermals for a few weeks after treatment.

Due to the poisons you've had with Chemo, the Radiation, the Pharmaceuticals, and the Anesthetics, your body is somewhat full of the toxins. I believe trying to detoxify your system will help. There are various ways to do this with diet, supplements and even colonics. I can claim to have benefited from all three. I consulted with Naturopaths to do this. (You can't do colonics till your tube is out)

Another thing to watch for is signs of depression which is very common and can be treated, so talk to your Drs if you are not feeling right and can't up and into your daily routine. Other emotional upsets are also an indication of anxiety and depression so don't let these symptoms go untreated.

Keep us informed how you are doing, but just know that most of us went through a rough patch post treatment before we leveled out and started to return a more 'new' normal condition.

All the best.
Scambuster (14 weeks out)

GRAVEY

Scambuster said:

Detox
HI Gravey,

Sound like you had a pretty standard awful experience with your RT and Chemo.

Post treatment can be tough and you need to be patient and measure your improvements by the 'week', not the day, as your condition may bounce up and down for a few weeks. Feeling cold seems standard post treatment. I was wearing long thermals for a few weeks after treatment.

Due to the poisons you've had with Chemo, the Radiation, the Pharmaceuticals, and the Anesthetics, your body is somewhat full of the toxins. I believe trying to detoxify your system will help. There are various ways to do this with diet, supplements and even colonics. I can claim to have benefited from all three. I consulted with Naturopaths to do this. (You can't do colonics till your tube is out)

Another thing to watch for is signs of depression which is very common and can be treated, so talk to your Drs if you are not feeling right and can't up and into your daily routine. Other emotional upsets are also an indication of anxiety and depression so don't let these symptoms go untreated.

Keep us informed how you are doing, but just know that most of us went through a rough patch post treatment before we leveled out and started to return a more 'new' normal condition.

All the best.
Scambuster (14 weeks out)

Thanks Scam,
I worry
Thanks Scam,

I worry too about the scans they do post treatment. Before I had the biopsy that found my primary on the base of my tongue, I had a PetCT that came back negative. So I fear that that may not be the test I need for verification of my Cancer being gone. I really want this tube out of me, Chemo port too, and wonder if I cant kill two birds with one stone by having them removed and have them look down my throat at my tongue at the same time? Seems that would be an ideal time to get a really good look at the affected area.

And also Scam, do you think 6 weeks post last treatment is an okay time to go back to work. I mean, is that an average time? I know were all different, and I guess my question is what would be a reason not to go back that soon? What symptoms/problems would I have to have to keep me from returning that soon?


Gravey

Kent Cass

GRAVEY said:

Thanks Scam,
I worry
Thanks Scam,

I worry too about the scans they do post treatment. Before I had the biopsy that found my primary on the base of my tongue, I had a PetCT that came back negative. So I fear that that may not be the test I need for verification of my Cancer being gone. I really want this tube out of me, Chemo port too, and wonder if I cant kill two birds with one stone by having them removed and have them look down my throat at my tongue at the same time? Seems that would be an ideal time to get a really good look at the affected area.

And also Scam, do you think 6 weeks post last treatment is an okay time to go back to work. I mean, is that an average time? I know were all different, and I guess my question is what would be a reason not to go back that soon? What symptoms/problems would I have to have to keep me from returning that soon?


Gravey

Port and tube
Had both of them in me since January of 09. NPC with unknown primary, my Oto says I'll have the Port for at least two more years. As for the feeding tube- all Drs. have said I can have it removed, though my Onco had initially said I should keep it for as long as the Port. It is my decision to keep it, for now, pending the results of my next PS, and any concerns I'm having of the C coming-back.

I returned to work a month after my last rad, for what it's worth.

kcass

GRAVEY

Kent Cass said:

Port and tube
Had both of them in me since January of 09. NPC with unknown primary, my Oto says I'll have the Port for at least two more years. As for the feeding tube- all Drs. have said I can have it removed, though my Onco had initially said I should keep it for as long as the Port. It is my decision to keep it, for now, pending the results of my next PS, and any concerns I'm having of the C coming-back.

I returned to work a month after my last rad, for what it's worth.

kcass

Thanks very much Kent. I
Thanks very much Kent. I still have a couple more weeks, I work in Kidney Dialysis, Im a mechanical technician. My job said they dont expect me to come back full force, but my job is physically demanding, another reason I want this stupid tube out ASAP. Im considering having the tube taken out the first week of Feb instead of going back to work. I could stay on Disability that way, and would be able to return to work sans tube. We'll see.

Gravey

Scambuster

GRAVEY said:

Thanks Scam,
I worry
Thanks Scam,

I worry too about the scans they do post treatment. Before I had the biopsy that found my primary on the base of my tongue, I had a PetCT that came back negative. So I fear that that may not be the test I need for verification of my Cancer being gone. I really want this tube out of me, Chemo port too, and wonder if I cant kill two birds with one stone by having them removed and have them look down my throat at my tongue at the same time? Seems that would be an ideal time to get a really good look at the affected area.

And also Scam, do you think 6 weeks post last treatment is an okay time to go back to work. I mean, is that an average time? I know were all different, and I guess my question is what would be a reason not to go back that soon? What symptoms/problems would I have to have to keep me from returning that soon?


Gravey

PET - CT
Gravey,

The PET CT is apparently the best method of detection to date. You must follow the 'pre-scan' protocols especially the fasting and NO intake of sugars well before the scan. It is supposed to be 95% accurate. I don't know of any other better test so I guess we are stuck with it for now.

I see no reason why you can have the Trifecta and get your Port & Peg pulled out and get a scope done in one procedure. Makes sense.

I've answered your recovery and 'back to work' questions on the other thread. Main thing to keep in mind is not to go back too soon. If you are up to doing a few hours a day to start with and see how you go. Because your recovery will probably still be in progress, it is important not to over do it because you will pay the price. Don't know if you do office work or pour concrete, but just govern the amount you do till you work out what is achievable each day, and build it back up from there. What can happen is you can burn fuel you don't have even though you feel fine, and then you pay double the next day(s).

You sound in pretty good spirits and doing very well for only six weeks out. We all have different rates of recovery. I am 14 weeks out and will return to work mid February and apply the same principle mentioned above. If I feel tired, I will go home and rest and maybe take a day off if required or work shorter hours till I know what I can handle.

Hope this is of some help.

Cheers
Scambuster

carolinagirl67

Gravey
You are a Rockstar! I love you positive outlook. You will be fine soon! Donna

Landranger25

carolinagirl67 said:

Gravey
You are a Rockstar! I love you positive outlook. You will be fine soon! Donna

Similar MO
Hi Gravey, yours and my experience are pretty close. (BOT SCC and one lymph node)I managed to go back to work 2 weeks after my last rad. I am just a CAD monkey so nothing too physical but even so the first week took a little out of me. I am now coming up on 3 months post treatment and consider myself to be doing well. I had my PEG removed as soon as I could convince them I didn't need it. I have my port and they said I would keep it for at least a year. I see my Onco this Friday. I had a PET 3 weeks ago and probably should have waited. Although results were good news, there was uptake on the BOT at the old lesion site and in the tonsil on that side. I am hoping the Oncologist will confirm my hunch that this was due to inflammation from these areas getting blasted from the rads and is nothing I should be worked up about. We'll see. Hang in there with your dry mouth and taste. I been there too but agree as said above, the improvement is so slow that you can't tell from day to day. Looking back 3 months ago, I have come miles. You will too.

Mike

fishingirl

Scambuster said:

Detox
HI Gravey,

Sound like you had a pretty standard awful experience with your RT and Chemo.

Post treatment can be tough and you need to be patient and measure your improvements by the 'week', not the day, as your condition may bounce up and down for a few weeks. Feeling cold seems standard post treatment. I was wearing long thermals for a few weeks after treatment.

Due to the poisons you've had with Chemo, the Radiation, the Pharmaceuticals, and the Anesthetics, your body is somewhat full of the toxins. I believe trying to detoxify your system will help. There are various ways to do this with diet, supplements and even colonics. I can claim to have benefited from all three. I consulted with Naturopaths to do this. (You can't do colonics till your tube is out)

Another thing to watch for is signs of depression which is very common and can be treated, so talk to your Drs if you are not feeling right and can't up and into your daily routine. Other emotional upsets are also an indication of anxiety and depression so don't let these symptoms go untreated.

Keep us informed how you are doing, but just know that most of us went through a rough patch post treatment before we leveled out and started to return a more 'new' normal condition.

All the best.
Scambuster (14 weeks out)

Hi Scambuster,
I am 3 1/2
Hi Scambuster,

I am 3 1/2 mos. out, and just started to get depressed about 3 weeks ago. Nothing seems to make me happy, I don't want to go out anywhere, I don't laugh anymore. What would you suggest the best help would be. I have heard that Paxil, or one of those types of drugs will help. But to only take them untill you start to feel better, then wean yourself off. But I am a little afraid to try those drugs.

Cindy

Hondo

Hi Gravey
Glad to have you here on CSN, sounds like you been to hell and came back, I guess that is the normal these days for us cancer survivors. I started with dizziness and lost of hearing, when to my first ENT and he could not find anything wrong with me but wanted to fix my Nose because I broke it twice when I was 12, I told him my Nose is not the problems doc I can’t hear and I am having dizzy spells. A few weeks later I found another ENT who when he saw me knew something was not right. He did a scope of my nasal passageway and seen the problem. I guest it just goes to show you that not all these doctors are educated the same in there field.

I am glad to hear that you have finished your treatment and hope you plan to stay here with us to help other through there treatment.

Take care

Scambuster

fishingirl said:

Hi Scambuster,
I am 3 1/2
Hi Scambuster,

I am 3 1/2 mos. out, and just started to get depressed about 3 weeks ago. Nothing seems to make me happy, I don't want to go out anywhere, I don't laugh anymore. What would you suggest the best help would be. I have heard that Paxil, or one of those types of drugs will help. But to only take them untill you start to feel better, then wean yourself off. But I am a little afraid to try those drugs.

Cindy

Feeling Blue
Hi Cindy,

Your feeling depressed is very common for us survivors so you are not alone. I must suggest you seek medical help first and usually that will be a Psychiatrist. Don't be afraid and please get straight onto your Doctor NOW.

I was put on 3 medications: an Anti-Depressant an Anti Anxiety, and a Mood Stabilizer. I was only 2 weeks out and was in very bad shape both physically and emotionally. The meds worked wonders and turned me around in a few days though they say it can take several weeks for the medications to have full effect. You may only need a little extra support right now to get you over this hump -but they should know what you need.

Keeping positive of course is important and using some kind of 'Positive Affirmation' that you repeat each day can also be of great benefit. If you google 'Louise Hay' who wrote a wonderful book called "You Can Heal Your Life', you will find a bunch of links etc to help you put together some 'Affirmations' It is important to get the words right. The body can respond to 'suggestion' remarkably well so don't underestimate the power in this advice.

You might want to start a new thread so we can all 'keep an eye on you' or if you wish email me direct.

Don't let your condition go untreated. We want to hear back soon !

Regards
Scambuster

Hondo

fishingirl said:

Hi Scambuster,
I am 3 1/2
Hi Scambuster,

I am 3 1/2 mos. out, and just started to get depressed about 3 weeks ago. Nothing seems to make me happy, I don't want to go out anywhere, I don't laugh anymore. What would you suggest the best help would be. I have heard that Paxil, or one of those types of drugs will help. But to only take them untill you start to feel better, then wean yourself off. But I am a little afraid to try those drugs.

Cindy

Hi Little Sister
I agree with Scambuster it is just one of those side affects of treatment, if it gets too bad call your doctor or go shopping anything that takes you out of that depression mood. Keep in contact Cindy we love you and are praying for you everyday.

cwcad

Hondo said:

Hi Gravey
Glad to have you here on CSN, sounds like you been to hell and came back, I guess that is the normal these days for us cancer survivors. I started with dizziness and lost of hearing, when to my first ENT and he could not find anything wrong with me but wanted to fix my Nose because I broke it twice when I was 12, I told him my Nose is not the problems doc I can’t hear and I am having dizzy spells. A few weeks later I found another ENT who when he saw me knew something was not right. He did a scope of my nasal passageway and seen the problem. I guest it just goes to show you that not all these doctors are educated the same in there field.

I am glad to hear that you have finished your treatment and hope you plan to stay here with us to help other through there treatment.

Take care

These hell stories can be ameliorated
IF only I had been on this site with all the great information for tongue cancer survivors. Gravey you have access to some very sage and germane information to help you in your recovery. I can only say that I did not do any of these things properly or with any information so I made all the mistakes to make my situation worse than it could have been.

I did not eat properly. I did not use the tube properly. I did not hydrate properly. I did not seek emotional help. I had this idea that drugs were bad. Weight loss, muscle fatigue, and major depression all left undiagnosed by my refusal to go to appointments or failing to schedule appointments. I made it through despite myself thanks to my wife, child, and God.

Don't over do the physical until your have good stamina. Stay hydrated!!! IT helps rejuvenate everything in the healing process. Natures nectar that is for sure.

Looking back at every set back I have had it was from doing the exact opposite of what I should have done. I was going to swallow food despite the pain. I did not want the food peg. I do not want to use a food pump to administer my protein. Looking back I had chemo brain before I even started since I did not want to face what was ahead of me. Head in the sand mentality. Bad decision on my part.

You are ahead of the game because you are here reading and becoming aware of what lay before you. I know as an absolute fact that had I been involved with this site to prepare me properly for what I was about to go through I would faired far better. The site helps me everyday. Though I do not post everyday. It is mostly because the information is already been given by some wonderful surviving members of this forum. I have not read anything from these members that was not true compared to my experience.

Read, learn, and follow the good advise from the other members. I wish I had.

Chefdaddy

cwcad said:

These hell stories can be ameliorated
IF only I had been on this site with all the great information for tongue cancer survivors. Gravey you have access to some very sage and germane information to help you in your recovery. I can only say that I did not do any of these things properly or with any information so I made all the mistakes to make my situation worse than it could have been.

I did not eat properly. I did not use the tube properly. I did not hydrate properly. I did not seek emotional help. I had this idea that drugs were bad. Weight loss, muscle fatigue, and major depression all left undiagnosed by my refusal to go to appointments or failing to schedule appointments. I made it through despite myself thanks to my wife, child, and God.

Don't over do the physical until your have good stamina. Stay hydrated!!! IT helps rejuvenate everything in the healing process. Natures nectar that is for sure.

Looking back at every set back I have had it was from doing the exact opposite of what I should have done. I was going to swallow food despite the pain. I did not want the food peg. I do not want to use a food pump to administer my protein. Looking back I had chemo brain before I even started since I did not want to face what was ahead of me. Head in the sand mentality. Bad decision on my part.

You are ahead of the game because you are here reading and becoming aware of what lay before you. I know as an absolute fact that had I been involved with this site to prepare me properly for what I was about to go through I would faired far better. The site helps me everyday. Though I do not post everyday. It is mostly because the information is already been given by some wonderful surviving members of this forum. I have not read anything from these members that was not true compared to my experience.

Read, learn, and follow the good advise from the other members. I wish I had.

Hi Gravey,
My hat goes off
Hi Gravey,

My hat goes off to you and everyone here that has described in such great detail your experiences. This is helping me very much as I try to keep a list of all the different medications you have all used to help in whatever symptoms your dealing with.

Because of my pre-existing blood disorder, Coproporphryia, all medical professionals have to check every medication they plan to give me against a "safe and unsafe" drug list.

In 2001, when I went through pancreatic cancer and the radical "whipple" surgery (no rad. or chemo) I had supplied the hospital's Pharmacist, (one each floor of the hospital) with the safe and unsafe list and my third week there they switched my pain drug from morphine to Percocet and I immediately went into a comma for three days. It was on the unsafe list.

The surgeon had installed a feeding tube in my small intestine and I was fed from a large liquid bag. I began going into several symptoms of a Porphyritic attack. The hospital staff and the pharmacist were clueless as to what was causing it.

In desperation I contacted the doctor that had diagnosed me with Porphryia and after telling him of my deteriating condition he had me read off the ingredients listed on the food bag. He then told me that it contained three ingrediants that were on the unsafe list.

This is why everyone's detailed experiences are so very important to me.

Gravey, my thoughts and prayers are with you.

Chefdaddy

Hondo

cwcad said:

These hell stories can be ameliorated
IF only I had been on this site with all the great information for tongue cancer survivors. Gravey you have access to some very sage and germane information to help you in your recovery. I can only say that I did not do any of these things properly or with any information so I made all the mistakes to make my situation worse than it could have been.

I did not eat properly. I did not use the tube properly. I did not hydrate properly. I did not seek emotional help. I had this idea that drugs were bad. Weight loss, muscle fatigue, and major depression all left undiagnosed by my refusal to go to appointments or failing to schedule appointments. I made it through despite myself thanks to my wife, child, and God.

Don't over do the physical until your have good stamina. Stay hydrated!!! IT helps rejuvenate everything in the healing process. Natures nectar that is for sure.

Looking back at every set back I have had it was from doing the exact opposite of what I should have done. I was going to swallow food despite the pain. I did not want the food peg. I do not want to use a food pump to administer my protein. Looking back I had chemo brain before I even started since I did not want to face what was ahead of me. Head in the sand mentality. Bad decision on my part.

You are ahead of the game because you are here reading and becoming aware of what lay before you. I know as an absolute fact that had I been involved with this site to prepare me properly for what I was about to go through I would faired far better. The site helps me everyday. Though I do not post everyday. It is mostly because the information is already been given by some wonderful surviving members of this forum. I have not read anything from these members that was not true compared to my experience.

Read, learn, and follow the good advise from the other members. I wish I had.

Cwcad
I been wanting to ask you a question so please don’t take it the wrong way. Wend I look at your picture you remind me of my Dad 35 years ago, by chance are you from Honduras or have any family that live there if not how about Scotland. Dad died last year at the age of 85 and never had a day of sickness.

A good old age and in good health, had three wives and 14 children that we know of, he did admit of a few more before passing on but did not give us there name or when they live

Take care my friend

cwcad

Hondo said:

Cwcad
I been wanting to ask you a question so please don’t take it the wrong way. Wend I look at your picture you remind me of my Dad 35 years ago, by chance are you from Honduras or have any family that live there if not how about Scotland. Dad died last year at the age of 85 and never had a day of sickness.

A good old age and in good health, had three wives and 14 children that we know of, he did admit of a few more before passing on but did not give us there name or when they live

Take care my friend

Hondo
Well thanks you Hondo!! From the sounds of it I would be in good company being compared to your father.

I am mostly a norseman with a little Scotch(Mckecknie) mixed in with the Norweigian/Swede mix on the mother's side. So I am a hazel eyed blonde albeit gray now "Ole" donja know... ya sure you betcha norweigian. I am not good with this but I think I am one eigth Scotch since one grandmother was half Scotch and half Norweigian the other was half Swede and half norwegian. My grandfather's both were Norwegian.

You have a very decerning eye, indeed.

GRAVEY

cwcad said:

These hell stories can be ameliorated
IF only I had been on this site with all the great information for tongue cancer survivors. Gravey you have access to some very sage and germane information to help you in your recovery. I can only say that I did not do any of these things properly or with any information so I made all the mistakes to make my situation worse than it could have been.

I did not eat properly. I did not use the tube properly. I did not hydrate properly. I did not seek emotional help. I had this idea that drugs were bad. Weight loss, muscle fatigue, and major depression all left undiagnosed by my refusal to go to appointments or failing to schedule appointments. I made it through despite myself thanks to my wife, child, and God.

Don't over do the physical until your have good stamina. Stay hydrated!!! IT helps rejuvenate everything in the healing process. Natures nectar that is for sure.

Looking back at every set back I have had it was from doing the exact opposite of what I should have done. I was going to swallow food despite the pain. I did not want the food peg. I do not want to use a food pump to administer my protein. Looking back I had chemo brain before I even started since I did not want to face what was ahead of me. Head in the sand mentality. Bad decision on my part.

You are ahead of the game because you are here reading and becoming aware of what lay before you. I know as an absolute fact that had I been involved with this site to prepare me properly for what I was about to go through I would faired far better. The site helps me everyday. Though I do not post everyday. It is mostly because the information is already been given by some wonderful surviving members of this forum. I have not read anything from these members that was not true compared to my experience.

Read, learn, and follow the good advise from the other members. I wish I had.

Thanks very much for ALL of
Thanks very much for ALL of everyones replies. I hope everyone is doing well. I am taking it all day by day. I am trying to accept the "New Normal" that Im living under. Im learning to accept the hearing loss, and am hoping for more taste to return and more saliva. I am concerned about the depression though and what I might come to experience. Does anyone have suggestions as to what drugs I might need to help me along the way. I know I dont need Xanax, I got some prescribed took them and all they did was knock me out. So I know Im not anxious.
Man this is rough. It's amazing how different my life is in just 3 months and will never be the same. I definitely find solace in my family and friends. I just cant believe how disconnected I feel. I dont yearn for ANYTHING. I dont laugh, which I used to do so much of. I was the jokester, I always was the one making the jokes, now I find my self not laughing at anything. Im definitely more sensitive to bad things. Which I dont mind, because I no that I tried not to think about those types of things before, but I dont want that to be the ONLY thing I focus on. I know time will heal a lot of what Im going through, it's just pretty rough right now. That's why Im thinking getting back to work will help in taking my mind off of a lot of the things Im dwelling on now. The fact that Im only 36 and have a 4 year old doesnt help the emotional thing either, but I wont give up.
Good luck to you all,


Gravey

Landranger25

GRAVEY said:

Thanks very much for ALL of
Thanks very much for ALL of everyones replies. I hope everyone is doing well. I am taking it all day by day. I am trying to accept the "New Normal" that Im living under. Im learning to accept the hearing loss, and am hoping for more taste to return and more saliva. I am concerned about the depression though and what I might come to experience. Does anyone have suggestions as to what drugs I might need to help me along the way. I know I dont need Xanax, I got some prescribed took them and all they did was knock me out. So I know Im not anxious.
Man this is rough. It's amazing how different my life is in just 3 months and will never be the same. I definitely find solace in my family and friends. I just cant believe how disconnected I feel. I dont yearn for ANYTHING. I dont laugh, which I used to do so much of. I was the jokester, I always was the one making the jokes, now I find my self not laughing at anything. Im definitely more sensitive to bad things. Which I dont mind, because I no that I tried not to think about those types of things before, but I dont want that to be the ONLY thing I focus on. I know time will heal a lot of what Im going through, it's just pretty rough right now. That's why Im thinking getting back to work will help in taking my mind off of a lot of the things Im dwelling on now. The fact that Im only 36 and have a 4 year old doesnt help the emotional thing either, but I wont give up.
Good luck to you all,


Gravey

Works for me
Gravey, I know everyone is different and what works for one person may not work for another. I am 3 months post treatment so we are fairly close. I look at what happened to me last year as a detour I guess. I put some things in my life on hold until I got through the treatment that I couldn't do without. For me, solving a problem works best if I break it down into smaller pieces. The problem itself seems less overwhelming and by breaking it down into smaller pieces I can see progress being made when I am able to solve some of the simpler smaller pieces. (The puzzle gets easier to solve once you complete the border) Anyways, I took completing each chemo week as my short term goal on the way to completing the long term goal. (finish the treatment!) As I completed each week eventually I was closer to the finish than I was to the start. Then I was done! From there, the goal was to get back to doing everything I did before the treatment. For me, short term, back on the ice with my 11 year old hockey player, eating real food and back to work. Although recently laid off, I did all these things. Long term, take the vacation we canceled last summer and finish the addition on our house that I had started. (Vacation coming up in March, being laid off now, drywall work started this week) When I'm given a test/challenge, for me the only option is to give it my best. Tell me I cannot do it or that it is impossible will only make my effort greater. Am I the same as before? Course not! I am still what I was inside before all this and so are you. I just have some new added stuff but that has happened everday of my life. I just got one big lump all at once instead of a little at a time. Get yourself back to work, be the jokester if that is you and be there for your 4 year old. (My daughter was my greatest motivation during my ordeal) You can be you again! I've rambled enough I guess. Good luck. You know you can do this and so do I.

Mike

wboaz

GRAVEY said:

Thanks very much for ALL of
Thanks very much for ALL of everyones replies. I hope everyone is doing well. I am taking it all day by day. I am trying to accept the "New Normal" that Im living under. Im learning to accept the hearing loss, and am hoping for more taste to return and more saliva. I am concerned about the depression though and what I might come to experience. Does anyone have suggestions as to what drugs I might need to help me along the way. I know I dont need Xanax, I got some prescribed took them and all they did was knock me out. So I know Im not anxious.
Man this is rough. It's amazing how different my life is in just 3 months and will never be the same. I definitely find solace in my family and friends. I just cant believe how disconnected I feel. I dont yearn for ANYTHING. I dont laugh, which I used to do so much of. I was the jokester, I always was the one making the jokes, now I find my self not laughing at anything. Im definitely more sensitive to bad things. Which I dont mind, because I no that I tried not to think about those types of things before, but I dont want that to be the ONLY thing I focus on. I know time will heal a lot of what Im going through, it's just pretty rough right now. That's why Im thinking getting back to work will help in taking my mind off of a lot of the things Im dwelling on now. The fact that Im only 36 and have a 4 year old doesnt help the emotional thing either, but I wont give up.
Good luck to you all,


Gravey

Chin up.
The treatment is hell. Period. You will survive it though and you will get to a "new normal" where you can be happy again and not think about Cancer 24/7.

I came here a year after my treatment ended because I could tell the people around me were getting tired of talking about cancer and couldn't relate to my experiences. Here there are plenty of people that have shared this experience. We all made it through and you will too.

As others have said communicate to your doctors what your experience is (depression, feeling cold, tired,...) as everyone will have their own reaction to the "standard protocol" that we are put through. They can help you address many of these issues. Attack them head on, this is your job now, your survival, and you need to work to make sure you are getting the best out of your doctors.

I'm now 4 years out and don't visit here quite as much as I used to but I cherish everyone here that helped me. We are all here for you and each other and that is a wonderful thing. God bless you.

Wayne