Squamous cell sinus cavity/nose=NEW to site and need support and connection
Hi. I just joined and have been battling aggressive invasive squamous cell ca of the nose/sinus cavity for 2 yrs. Have had 6 surgeries and 33 radiation treatments. Am homebound since last surgery Dec. 2013.
I'm having trouble connecting with people. Tried the chat room and couldn't get in. Am alone and scared and really need to connect with other folks. Am up all night and sleep in day; but IS THERE ANYONE OUT THERE NOW? I have lost my right nose and part of cheek/bone and sinus cavity open completely and has to stay unreconstructed for 2 yrs to make sure cancer doesn't come back again. Did I say I am sacred and alone? Thanks. Adirondackgirl
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Hi Adirondackgirl
Welcome to the family and don’t be afraid we are all in the same boat here on CSN. I had radiation twice and it damaged the bones in my face then lost a lot of weight to where I look like a walking Skelton with skin stretch over me. It is my new normal, it is the way I am now and I don’t care what other people say or do or think. I also have a PEG tube and will have it for the rest of my life. I go out to eat with my wife and bring my NutrBullet with me when the food comes I load my bullet and plug it into a wall outlet and eat at the table with her. Don’t worry about looks; we are all different in how we come out of this. When God looks at us he does not look at the outside but at the inside what is in the heart. I can’t talk very well but if you need contact me my e-mail is on my post just click on my name Hondo. I will keep you in my prayers.
God Bless
Hondo
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Welcome Adirondackgirl...
I'm so glad you posted.....you aren't alone anymore!! This is a very active group, tho I don't know how many night owls are around these days. I used to work the night shift so would catch the middle of the night calls for help, but have retired and now I sleep at night
. This is a very active forum so you will find the support you need here....and we are like an extended family.p
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Welcome
Like Phrannie said, you are not alone anymore. If you have been lurking for awhile before joining you saw that this group is active. I don't think anyone has to wait more than 24 hours (and usually less) for a response. I am of the rare sort also. I have been fighting 'c' since 2010, first upper lip, then neck dissection a year later--both followed by radiation. I started having double vision in the fall of 2013, optic nerve involved and I needed to have my eye removed. Chemo and radiation to follow, abcess in sinus, more surgery and then a tumor on skull and nerve involvement on cheek. Cyberknife took care of last battle. I have squamous cell carncer with spindle cell varient, perineural involvement. At least it's all in my head! Are you inside because of doctors orders or not wanting to be seen by others? No reconstruction for 2 years, did you have a graft of any kind or did you have to wait to heal? Are you a candidate for a prostetic? I wear a patch, I had a skin graft from my wrist. I need a little nip tuck from the settling and after that heals I will be looking into a prostetic that will attach to my glasses. I had a long recovery the last time but I am out again, taking walks, going to church, picking up grandson's at school and I even volunteered for the 100th day of school, which I always enjoyed when I was teaching. Sometimes I check in late at night when I can't sleep or when I have sinus problems (often). Please stay in contact with us. This has been a very supportive, encouraging group for me.
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Wow!!!!KTeacher said:Welcome
Like Phrannie said, you are not alone anymore. If you have been lurking for awhile before joining you saw that this group is active. I don't think anyone has to wait more than 24 hours (and usually less) for a response. I am of the rare sort also. I have been fighting 'c' since 2010, first upper lip, then neck dissection a year later--both followed by radiation. I started having double vision in the fall of 2013, optic nerve involved and I needed to have my eye removed. Chemo and radiation to follow, abcess in sinus, more surgery and then a tumor on skull and nerve involvement on cheek. Cyberknife took care of last battle. I have squamous cell carncer with spindle cell varient, perineural involvement. At least it's all in my head! Are you inside because of doctors orders or not wanting to be seen by others? No reconstruction for 2 years, did you have a graft of any kind or did you have to wait to heal? Are you a candidate for a prostetic? I wear a patch, I had a skin graft from my wrist. I need a little nip tuck from the settling and after that heals I will be looking into a prostetic that will attach to my glasses. I had a long recovery the last time but I am out again, taking walks, going to church, picking up grandson's at school and I even volunteered for the 100th day of school, which I always enjoyed when I was teaching. Sometimes I check in late at night when I can't sleep or when I have sinus problems (often). Please stay in contact with us. This has been a very supportive, encouraging group for me.
I just read your wall, so much like me. Sister from a different mister! Where are you located. I know it is hard to go out in the cold. I had to cover my face to go out in the cold and I always were a wide brimmed hat. I have a hat for the summer and one for winter and one for rain. You need to get outside a bit if only on a porch or walk out to get the mail. Are you able to drive? I feel like we are 'Kindred Spirits.'
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Adirondackgirl, good morning
Adirondackgirl, good morning and welcome to our family, although i'm sorry you need to be here. like the others said, you are NOT alone any more. we will be here for you when you need to talk, cry, vent, hollar, share good news or a good day, tell a joke or any other reason you need us to be here! i'm sorry you don't have a support system close to you to help you thru each day. when people ask you if there is anything they can do, be honest, tell them yes, you can visit me so i'm not alone. let friends and family be there for you. i have a friend on FB in the Suvivors of Head and Neck Cancer group who lost his nose. I'm not sure how long he had to wait but he just got his prothesis and you can't tell it isn't real. when he isn't wearing it, he wears a surgerical mask. he hasn't let his situation stop him from enjoying life and i hope you won't either. i hope you will continue to post and be an active member here as even that can help you feel more alive. i look forward to reading more from you.
God bless you,
dj
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Welcomedebbiejeanne said:Adirondackgirl, good morning
Adirondackgirl, good morning and welcome to our family, although i'm sorry you need to be here. like the others said, you are NOT alone any more. we will be here for you when you need to talk, cry, vent, hollar, share good news or a good day, tell a joke or any other reason you need us to be here! i'm sorry you don't have a support system close to you to help you thru each day. when people ask you if there is anything they can do, be honest, tell them yes, you can visit me so i'm not alone. let friends and family be there for you. i have a friend on FB in the Suvivors of Head and Neck Cancer group who lost his nose. I'm not sure how long he had to wait but he just got his prothesis and you can't tell it isn't real. when he isn't wearing it, he wears a surgerical mask. he hasn't let his situation stop him from enjoying life and i hope you won't either. i hope you will continue to post and be an active member here as even that can help you feel more alive. i look forward to reading more from you.
God bless you,
dj
You will be glad that you found this site. Plenty of support. My cancer was of the lower jaw with a recurrence at 15 mos. post tx. Recurrence was around carotid, treated at Mayo and that tumor is now gone but another recurrence on other side. Currently, more chemo to kill any microscopic cells then back to Mayo. Not sure why, maybe the xanax, but I was just thinking how odd it is that I have slept so well at night since this all began for me 2+ years ago.
I'm sure you will find the support you need on this site. We welcome you.
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up late (West coast)
adirondackgirl,
Welcome to the H&N forum, where being a night owl seems to be one of our conditions. I know very few people outside this forum who “get it”, but here I am amongst knowledgeable and understanding friends.
You are free to participate, to offer advice, to listen, to observe.
I hope your treatment continues to be successful and wish you the best.
Matt
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Sorry you find yourself here
Sorry you find yourself here but you will find hope, support and caring here. When my husband was in treatment he slept alot and I felt very lonely. But when I got on this site, at any time day or night, a least one person was there to listen and encourage. Hugs and prayers.
Debbie
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Alone
Know that lonely feeling,But like everyone says you ain't alone anymore,I was to scared to tell my family at first and had restless nights and days slept or napped at different times and would wake up scared,rest was for only a couple hours at a time finally found this sight and discussed things with my family and wow what a relief it was for so many to have helped me through the turmoil,Anyways welcome to your new Home away from Home,If you need anything just give us a hollar.
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KTeacher said:
Welcome
Like Phrannie said, you are not alone anymore. If you have been lurking for awhile before joining you saw that this group is active. I don't think anyone has to wait more than 24 hours (and usually less) for a response. I am of the rare sort also. I have been fighting 'c' since 2010, first upper lip, then neck dissection a year later--both followed by radiation. I started having double vision in the fall of 2013, optic nerve involved and I needed to have my eye removed. Chemo and radiation to follow, abcess in sinus, more surgery and then a tumor on skull and nerve involvement on cheek. Cyberknife took care of last battle. I have squamous cell carncer with spindle cell varient, perineural involvement. At least it's all in my head! Are you inside because of doctors orders or not wanting to be seen by others? No reconstruction for 2 years, did you have a graft of any kind or did you have to wait to heal? Are you a candidate for a prostetic? I wear a patch, I had a skin graft from my wrist. I need a little nip tuck from the settling and after that heals I will be looking into a prostetic that will attach to my glasses. I had a long recovery the last time but I am out again, taking walks, going to church, picking up grandson's at school and I even volunteered for the 100th day of school, which I always enjoyed when I was teaching. Sometimes I check in late at night when I can't sleep or when I have sinus problems (often). Please stay in contact with us. This has been a very supportive, encouraging group for me.
Hi KTteacher,
So sorry for what you have had to go through. I will pray for you. Thank you so much for responding. I live in upstate NY where it has been subzero weather for most of winter. I can't go outside in that temp because I have no right nose and part of cheek/cheekbone missing due to surgery. It is open to the sinus cavity and my surgeon said it is too cold to be exposed and also risk of infection. Had last surgery Dec. 19 and still recovering...lots of pain due to exposed nerves in surgical site. I can't have it reconstructed for at least 2 yrs. as I had either 3 recurrences or it was hiding and they want to make sure that the cancer doesn't reappear.
So I have surg. packing and a dressing and a nurse comes every other day to clean site and repack,etc.
Where are you located? I'm up all night, as can't sleep; so sleep in the day. Would love to know more about what you've been through and how you've handled different things. Have you had to remain unreconstructed at any pt.
Hope to hear from you soon,
Adirondackgirl
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debbiejeanne said:
Adirondackgirl, good morning
Adirondackgirl, good morning and welcome to our family, although i'm sorry you need to be here. like the others said, you are NOT alone any more. we will be here for you when you need to talk, cry, vent, hollar, share good news or a good day, tell a joke or any other reason you need us to be here! i'm sorry you don't have a support system close to you to help you thru each day. when people ask you if there is anything they can do, be honest, tell them yes, you can visit me so i'm not alone. let friends and family be there for you. i have a friend on FB in the Suvivors of Head and Neck Cancer group who lost his nose. I'm not sure how long he had to wait but he just got his prothesis and you can't tell it isn't real. when he isn't wearing it, he wears a surgerical mask. he hasn't let his situation stop him from enjoying life and i hope you won't either. i hope you will continue to post and be an active member here as even that can help you feel more alive. i look forward to reading more from you.
God bless you,
dj
Hi dj,
Thanks so much for responding to me. I know feel like I have a family! Is this the best way to talk with others? To go to the discussion board? What is the 'chat' for?
I would like to find out more about your friend that has a prosthetic. I have to wait 2 yrs before reconstruction to make sure no more cancer appears; but my surgeon said a prosthetic is complicated. I'm wondering if there is such a thing as a temp. prosthetic? I have radiated skin so it doesn't tolerate much more than hypoallergenic tape on it.
Tell me more about you!
Blessings and thank you for your compassion and welcome!
Adirondackgirl
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CivilMatt said:
up late (West coast)
adirondackgirl,
Welcome to the H&N forum, where being a night owl seems to be one of our conditions. I know very few people outside this forum who “get it”, but here I am amongst knowledgeable and understanding friends.
You are free to participate, to offer advice, to listen, to observe.
I hope your treatment continues to be successful and wish you the best.
Matt
Hi Matt,
Thanks so much for responding to me! I now feel like I have a family! Are you a night owl also...sounds like there are others. My friends and family have distanced from me, as the cancer treatment/recurrences, etc got more involved. So I am so glad to have found this forum where people understand and can talk about things.
Is this discussion board the best place to connect with people? Can you tell my your story?
Blessings.....what are your sleep times?
Adirondackgirl
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catfish_58 said:
Alone
Know that lonely feeling,But like everyone says you ain't alone anymore,I was to scared to tell my family at first and had restless nights and days slept or napped at different times and would wake up scared,rest was for only a couple hours at a time finally found this sight and discussed things with my family and wow what a relief it was for so many to have helped me through the turmoil,Anyways welcome to your new Home away from Home,If you need anything just give us a hollar.
Thanks so much catfish! I now feel like I have a family and know that when I scared and alone I can get online with you folks! What a great picture of you and the fish! I used to live on the Oregon coast and we had neighbors that were salmon fisherman-awesome.
Yes, I'm feeling alone and scared as my cancer has come back or they missed a pocket 3 times. I had my last surgery in Dec. and have to remain unreconstructed for at least 2 yrs. with a hole in my face where my right nose/cheeck was-part of cheeck.
I need some support and hope. Lately I have lost alot of hope as this latest surgery did alot of collateral damage and the hole is now so big to me. Seems I'll never get past all of this.
Need to hear others stories of hope and faith and need encouragement to keep going.
If you feel you would like to ; I would like to hear your story.
Blessings....you must live near water being a fisherman!
Adirondackgirl
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Understandadirondackgirl said:Hi KTteacher,
So sorry for what you have had to go through. I will pray for you. Thank you so much for responding. I live in upstate NY where it has been subzero weather for most of winter. I can't go outside in that temp because I have no right nose and part of cheek/cheekbone missing due to surgery. It is open to the sinus cavity and my surgeon said it is too cold to be exposed and also risk of infection. Had last surgery Dec. 19 and still recovering...lots of pain due to exposed nerves in surgical site. I can't have it reconstructed for at least 2 yrs. as I had either 3 recurrences or it was hiding and they want to make sure that the cancer doesn't reappear.
So I have surg. packing and a dressing and a nurse comes every other day to clean site and repack,etc.
Where are you located? I'm up all night, as can't sleep; so sleep in the day. Would love to know more about what you've been through and how you've handled different things. Have you had to remain unreconstructed at any pt.
Hope to hear from you soon,
Adirondackgirl
Now I understand the situation better. upstate NY. my neighbor went to visit her family after Christmas, I don't know how the flight made it, all she said was, it was cold. I am in sunny, dry California. Number 1, are you seeing a cancer specialist and receiving treatment at a teaching hospital? Perineural invasion is what I also have, we just seem to be chasing it, so far only in my head! Nasty stuff. I am glad that a nurse comes to change dressings. As I said, my eye was removed because of invasion on the optic nerve. I did have a skin graft but was very swollen and ended up with an abcess in my sinus and more surgery. I couldn't wear my glasses so my husband was my 'seeing eye husband.' I have been very lucky to have family support, friends and church family. I was amazed that people came over to see me, I was quite a sight. You might need to be honest with some family and friends that you need their support. You might contact a church in your area or the chaplain at the hospital and see about home visits. Hopefully there are some programs on TV that you enjoy watching, music that you like to listen to or do you read. Many of us found that we watched a lot of the food channel during treatment! Will you be having more radiation and/or chemo? There is a group on Facebook for Head and neck cancer survivors, I will contact Phrannie to see how to join. I am technologically challenged! Thankfully we have some tech wise people on this site to help us (me). We will just have to play tag with posts until we figure out some times that overlap. Are you just a night owl or are you having problems sleeping? I frequently end up back in my recliner to sleep. seems that I need the elevation and extra pillows don't seem to do the job.
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do u use facebook? if so,adirondackgirl said:Hi dj,
Thanks so much for responding to me. I know feel like I have a family! Is this the best way to talk with others? To go to the discussion board? What is the 'chat' for?
I would like to find out more about your friend that has a prosthetic. I have to wait 2 yrs before reconstruction to make sure no more cancer appears; but my surgeon said a prosthetic is complicated. I'm wondering if there is such a thing as a temp. prosthetic? I have radiated skin so it doesn't tolerate much more than hypoallergenic tape on it.
Tell me more about you!
Blessings and thank you for your compassion and welcome!
Adirondackgirl
do u use facebook? if so, what name do you use? come to facebook and request me as a friend and i'll have an invite to the Head and Neck Cancer Suviviors sent to you. i think you will find some good info there also. my fb name is Debbie Delaney Deaton.
I have cancer of the laynx in Aug., 2009. Had 35 rad tx Sept. - Oct. 22/2009. Recurrence Feb. 2012. Total laryngectomy and lateral neck dissection 2/28/12. Spent a solid month in hospital and several months at home trying to recover. For some reason it took me a looooooong time to start to feel human again. Fistula complication which required surgery in June, 2012. Nerve damage in neck and left shoulder, permanent. Still have a lot of trouble swalling food and can't swallow pills unless i cut them in 2. it takes me a very long time to eat and my meal is always cold long before i finish but I'm thankful that i can eat!! Couldn't talk for 1.5 years. Got extremely depressed and felt cut off from the rest of the world, including family and friends. when you can't participate in began to see family and friends again, I felt alive again. Life has been much better since being able to talk and I enjoy a conversation you feel like there is no reason to be there at all. Once I started talking the depression got better and Ilife a lot more. I still have trouble talking at times but i just take my lary tube out, clean it, and then i'm able to talk again. I didn't know about this site when i was going thru my cancer and i'm really sorry for that b/c it surely would have been a great help to me. I come here everyday and try to encourage others and remind them that they, like me, will also be a SURVIVOR! this is a great site with lots of good info and wonderful people to provide support. I hope you will hang around. hope to see you on facebook.
God bless you,
dj
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Thank youdebbiejeanne said:do u use facebook? if so,
do u use facebook? if so, what name do you use? come to facebook and request me as a friend and i'll have an invite to the Head and Neck Cancer Suviviors sent to you. i think you will find some good info there also. my fb name is Debbie Delaney Deaton.
I have cancer of the laynx in Aug., 2009. Had 35 rad tx Sept. - Oct. 22/2009. Recurrence Feb. 2012. Total laryngectomy and lateral neck dissection 2/28/12. Spent a solid month in hospital and several months at home trying to recover. For some reason it took me a looooooong time to start to feel human again. Fistula complication which required surgery in June, 2012. Nerve damage in neck and left shoulder, permanent. Still have a lot of trouble swalling food and can't swallow pills unless i cut them in 2. it takes me a very long time to eat and my meal is always cold long before i finish but I'm thankful that i can eat!! Couldn't talk for 1.5 years. Got extremely depressed and felt cut off from the rest of the world, including family and friends. when you can't participate in began to see family and friends again, I felt alive again. Life has been much better since being able to talk and I enjoy a conversation you feel like there is no reason to be there at all. Once I started talking the depression got better and Ilife a lot more. I still have trouble talking at times but i just take my lary tube out, clean it, and then i'm able to talk again. I didn't know about this site when i was going thru my cancer and i'm really sorry for that b/c it surely would have been a great help to me. I come here everyday and try to encourage others and remind them that they, like me, will also be a SURVIVOR! this is a great site with lots of good info and wonderful people to provide support. I hope you will hang around. hope to see you on facebook.
God bless you,
dj
Thank you Debbie. I contacted Phrannie and she said we needed to find out if AGirl is on Facebook. If she is on Facebook then she can 'friend request' you.
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Some additional help and support.....adirondackgirl said:Thanks so much catfish! I now feel like I have a family and know that when I scared and alone I can get online with you folks! What a great picture of you and the fish! I used to live on the Oregon coast and we had neighbors that were salmon fisherman-awesome.
Yes, I'm feeling alone and scared as my cancer has come back or they missed a pocket 3 times. I had my last surgery in Dec. and have to remain unreconstructed for at least 2 yrs. with a hole in my face where my right nose/cheeck was-part of cheeck.
I need some support and hope. Lately I have lost alot of hope as this latest surgery did alot of collateral damage and the hole is now so big to me. Seems I'll never get past all of this.
Need to hear others stories of hope and faith and need encouragement to keep going.
If you feel you would like to ; I would like to hear your story.
Blessings....you must live near water being a fisherman!
Adirondackgirl
Adirondackgirl,
I couldn't help but feel your desperate need for help and support. I know you will get a lot of support from this forum, so Welcome!
Today, as I was researching for my loved on on his arm pain he has gotten after tx, I came across this site under cancer.org. It had mentioned support for oral cancer patients struggling with major reconstruction for facial disfigurement. Anyways, it mentions free online resource about, by, and for people with facial differences, including facial disfigurement as a result of cancer; offers information on dealing with diagnosis, finding a good doctor, health insurance, research articles, and lifestyle changes.
http://www.ur.umich.edu/0607/Oct09_06/05.shtml
http://www.uofmhealth.org/health-library/shc29fad#shc29fad-ameriface
Not sure what it will have to offer, but thought I'd share with you.
God Bless,
~C
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Here for youadirondackgirl said:Hi Matt,
Thanks so much for responding to me! I now feel like I have a family! Are you a night owl also...sounds like there are others. My friends and family have distanced from me, as the cancer treatment/recurrences, etc got more involved. So I am so glad to have found this forum where people understand and can talk about things.
Is this discussion board the best place to connect with people? Can you tell my your story?
Blessings.....what are your sleep times?
Adirondackgirl
While my story is diffferent, and still getting new chapters all the time, like everyone here, I can relate to your feeling of isolation and fear. Given where you live, and the kind of winter this year, it must be very hard to have to stay indoors. My advice would be to not keep track of the time, and listen to what your body tells you. If it says "feed me", then eat what you can. If it says "nap time" sleep all that you need. If it says "Watch a Breaking Bad Marathon" then load up the DVR and go for it.
Don't base your life on the clocks--base it on what you need to be doing at any part of the day (or night).
You have found the best group of people on the planet to share your story with, and to help you when you are down. As you did by coming here for help, be sure to get involved on the site and interact with us.
Mike
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