Feeling better already

Larrykins

Hello All,

Have been reading the board for the last 4 hours. Inspirational, thank you. Just registered and before I go to bed (It is 2.30am where I am) I wanted to introduce myself.

Strange entry into the cancer-world for me. 43 years old. Smoker, heavy drinker, HPV-. Had swelling on the left side of my neck on and off over 5 years or so. Went to many doctors before one took me seriously and gave me an MRI. They said I had a benign tumor in my salivary gland which I should have taken out before it grew. (I now wonder how you can see if a tumor is benign or not by looking at MRI).

Saw 2 ENT specialists. Both said they would operate. Both didn't like the 'look' of my left tonsil. Neither thought of 'biopsy' or 'cancer'. Both agreed with MRI diagnosis.

Had operation Feb 2011. Took my left tonsil and 3 'infected-looking' lymph nodes on the left side of neck. Doctor found no growth in saliva gland. Just the dodgy lymph nodes. Still no talk of cancer.

2 weeks later (no-one really in a rush!) and biopsy came through. Doctor genuinely surprised.
Tonsil cancer with meta. to 3 lymph nodes.

35 days IMRT, 7 days cisplatine. No peg, just porta-cath. Supported treatment well. Only real major pain was a necrosis which began at the back of my throat as a tiny white spot and over 3months carved a large, painful hole in the back of my throat which still hurts. I wanted to see if anyone else had similar. Haven't found a thread yet.

Finished treatment June 2011.

August and PET scan showed 5 'suspicious' points on left-side of neck. Selective neck-dissection in September removing 20 nodes returned negative result. Never been so happy to have unecessary, painful surgery!

Main problem I have is lack of any support structure. I live in a foreign country. I have had no contact (apart from hospital) with any other cancer sufferers and recently have been sinking lower and lower into a depression even though I should be feeling wonderful. When they said my cancer sites have been sterilised and that I am officially in remission I was kind of expecting to feel, Idk, good? Ecstatic? Hug my wife and children and embrace life anew? No. I feel empty and not at all grateful for a second chance. I don't have this daily joy born of a recent brush with mortality. Almost paralysed with 'what just happened?'

Finding this site and boring everyone senseless with a really long post has really helped hugely however. Reading posts on flouride trays has fascinated me in a way that just isn't natural! I love it and thank you all for your contributions.

I will be back.
Larry

longtermsurvivor

You're a sick man, Larry
so you fit right in! Welcome to the club. If you've done a bit of reading, you'll have noticed that the empty feeling post treatment isn't at all uncommon. I suspect this is not unique to H and N cancer survivors; it would apply to people who were incarcerated for a year or more and beaten every day as well.

Helps to talk about it.

I had 35 sessions of radiation, back before there was IMRT. Didn't get a bit of mucositis, so I can't share this with you. I'm back in treatment again, having now had 7 out of 33 planned IMRT sessions. The little guy in the back of my head says, geez that's a total of 68 sessions. Something like 13,600 rads. If I don't get mucositis this time, I've got the toughest throat you ever heard of.

Pat

Larrykins

longtermsurvivor said:

You're a sick man, Larry
so you fit right in! Welcome to the club. If you've done a bit of reading, you'll have noticed that the empty feeling post treatment isn't at all uncommon. I suspect this is not unique to H and N cancer survivors; it would apply to people who were incarcerated for a year or more and beaten every day as well.

Helps to talk about it.

I had 35 sessions of radiation, back before there was IMRT. Didn't get a bit of mucositis, so I can't share this with you. I'm back in treatment again, having now had 7 out of 33 planned IMRT sessions. The little guy in the back of my head says, geez that's a total of 68 sessions. Something like 13,600 rads. If I don't get mucositis this time, I've got the toughest throat you ever heard of.

Pat

Thank you for the welcome
Thank you for the welcome Pat.

For me it actually hurts to talk about it. Definitely better to write it down!

You call it mucositis. Is that the same as necrosis?

Wish you all the best for your remaining sessions. I know they will pass quickly

Greend

longtermsurvivor said:

You're a sick man, Larry
so you fit right in! Welcome to the club. If you've done a bit of reading, you'll have noticed that the empty feeling post treatment isn't at all uncommon. I suspect this is not unique to H and N cancer survivors; it would apply to people who were incarcerated for a year or more and beaten every day as well.

Helps to talk about it.

I had 35 sessions of radiation, back before there was IMRT. Didn't get a bit of mucositis, so I can't share this with you. I'm back in treatment again, having now had 7 out of 33 planned IMRT sessions. The little guy in the back of my head says, geez that's a total of 68 sessions. Something like 13,600 rads. If I don't get mucositis this time, I've got the toughest throat you ever heard of.

Pat

Had to smile at your heading
Thats what my ex-wife said to me but it wasn't Larry and it had a few mor adjectives.


Larry - Hate to tell you this but it is normal and as you heal it will get better. Slowly but surely.

Hang in there.

Denny

Skiffin16

Thick Slime....
LOL, what Pat speaks of is more thick phlegm that coats the throat, ropey and hard to get rid of.

What your speak of is actually deteriorating flesh...so no they aren't the same.

Depression is common, especially early on after treatment... I think a lot comes from the fact that you have been the main attraction...everday for several months. All of a sudden you are cut lose..not knowing where you stand, what's your outcome, will you survive, what to expect in the future....all valid thoughts. Damn, I'm depressing myself and I've been out three years...LOL.

It'll get better with time...also if it's bad enough, always communicating with your MD's and perhaps anxiety or depression drugs, support groups, counceling...all ways of dealing.

Welcome to the forum, you have people here that love to read long boring posts on survivorship.

Stay positive, keep strong....stay hydrated....LOL.

Best,
John

longtermsurvivor

Larrykins said:

Thank you for the welcome
Thank you for the welcome Pat.

For me it actually hurts to talk about it. Definitely better to write it down!

You call it mucositis. Is that the same as necrosis?

Wish you all the best for your remaining sessions. I know they will pass quickly

Mucositis = inflammation of the mucos membrane
With radiation it is graded I-IV. Not important. Necrosis is a fine word for what you are describing. With respect to my own treatment, I'm just trying to enjoy every day I still have saliva, and taste.