Post -cancer blahs
This is my first time writing. First off, congrats to all of you who have beaten the beast. And the best of luck to those of you who are still engaged in the battle. I was diagnosed with HPV positive squamous cell carcinoma last July. The tumor was on the base of my tongue and metasisized (stage 4) to my neck and developed into what looked like a brachial cleft cyst (a BIG 'ol bubble:google it for pics if you're curious). I finished my seven week treatment (radiation every day and three rounds of cis-platin) last October. It was rough. I had my first post-treatment PET scan in April and I'm cancer-free:YAY! I've a lot of my taste back except for sweetness: completely gone. Still having a problem with a lack of saliva, though.I know that I should be grateful that I'm still alive (And believe me, I am. I've got a 10 year old son whom I adore)but I'm bored and depressed ALL THE TIME (Yes, even after six months out). I've discussed this with my docs, and they all suggested that I join something like this network. And by the way, I HATE whining (especially if it comes from me) which is why I'm writing.I was hoping someone out there (who's been through it) can provide a fresh perspective.
Thanks,
Paintslinger
Comments
-
You have come to the right
You have come to the right place. There are some great people here to help, make you laugh and offer support. My husband was diagnosed with stage four base of tongue with mets to two lymph nodes last June. Six month PET showed normal lymph nodes and tongue but a nodule in lung. Three months later and there are several more nodes. Biopsy showed cancer. We are handling it ok thanks to our friends on CSN and anti depressants. One thing that helps us is knowing that many on this board have lung nodules that have hung around for years and never grown so we hold on to that. I pray you have a long history of NED and if you need to take anti-depressants for awhile (most here do) then it is normal and not a stigma. Just as our men and women who have gone to war, we have been in a war against cancer and it is sometimes necessary to take meds to heal our minds. After all a big part of the battle is mental attitude.
Debbie0 -
Welcome.jim and i said:You have come to the right
You have come to the right place. There are some great people here to help, make you laugh and offer support. My husband was diagnosed with stage four base of tongue with mets to two lymph nodes last June. Six month PET showed normal lymph nodes and tongue but a nodule in lung. Three months later and there are several more nodes. Biopsy showed cancer. We are handling it ok thanks to our friends on CSN and anti depressants. One thing that helps us is knowing that many on this board have lung nodules that have hung around for years and never grown so we hold on to that. I pray you have a long history of NED and if you need to take anti-depressants for awhile (most here do) then it is normal and not a stigma. Just as our men and women who have gone to war, we have been in a war against cancer and it is sometimes necessary to take meds to heal our minds. After all a big part of the battle is mental attitude.
Debbie
To the board Paintslinger, as Debbie said you have found the right place
to vent, whine, and share your success stories. There are many good people
on here, its like a "family" everyone helps each other in a supportive way....
its like having your own cheerleading section. I was stage 2 tonsil cancer and
had 33rounds of rads only. I'm 10 weeks out now and things are pretty good,
I'm trying not to complain. Still have side effects, taste has improved alot but
the dry mouth is really bad, only one sore on the back of tongue and thats it.
The one big problem for me is I cannot breath through the nose, apparently
the rads have formed stenosis and blocked of my airway so for now its mouth
breathing only which makes the dry mouth worse....See you can whine on here..lol
Once again sorry your here but welcome.
God bless
Tonsil dad,
Dan.0 -
ThanksTonsil Dad said:Welcome.
To the board Paintslinger, as Debbie said you have found the right place
to vent, whine, and share your success stories. There are many good people
on here, its like a "family" everyone helps each other in a supportive way....
its like having your own cheerleading section. I was stage 2 tonsil cancer and
had 33rounds of rads only. I'm 10 weeks out now and things are pretty good,
I'm trying not to complain. Still have side effects, taste has improved alot but
the dry mouth is really bad, only one sore on the back of tongue and thats it.
The one big problem for me is I cannot breath through the nose, apparently
the rads have formed stenosis and blocked of my airway so for now its mouth
breathing only which makes the dry mouth worse....See you can whine on here..lol
Once again sorry your here but welcome.
God bless
Tonsil dad,
Dan.
Debbie and Dan,
Thanks for the warm welcome and kind words. I think I've come to the right place.As we all know, you can describe this experience (including "collateral damage") to people all day long, but if someone has not experienced it they just won't get it.Quite honestly, I actually feel guilty NOT being in a state of bliss all day simply because I'm alive. I guess I should be especially after reading some of the posts on this site: Man, some folks are really going through it. My cancer is gone (for now) and I find myself looking around thinking "I survived cancer for THIS". Expanding on your analogy, Debbie, I guess it's similar to post-traumatic stress disorder. My life was kind of a sit-com even before the cancer. Maybe I thought post-cancer life would be different somehow. Then I look at my son, and all the friends and family who helped me get through this and feel like there's something seriously wrong with me north of the neck for feeling like this ALL the time despite my many blessings. My docs tell me that this is a common reaction and think I might find anti-depressants helpful.
Thanks again, and I sincerely hope that everything works out for the best for both of you,
Paul (Paintslinger)0 -
Hello Paul!!Tonsil Dad said:Welcome.
To the board Paintslinger, as Debbie said you have found the right place
to vent, whine, and share your success stories. There are many good people
on here, its like a "family" everyone helps each other in a supportive way....
its like having your own cheerleading section. I was stage 2 tonsil cancer and
had 33rounds of rads only. I'm 10 weeks out now and things are pretty good,
I'm trying not to complain. Still have side effects, taste has improved alot but
the dry mouth is really bad, only one sore on the back of tongue and thats it.
The one big problem for me is I cannot breath through the nose, apparently
the rads have formed stenosis and blocked of my airway so for now its mouth
breathing only which makes the dry mouth worse....See you can whine on here..lol
Once again sorry your here but welcome.
God bless
Tonsil dad,
Dan.
I'm so glad you got directed to this site, and followed up on the advice...I have been here every single day since March...I come to get my daily inspiration, get advice, and to see how all my friends are doing...and they ARE friends. You have survived thru a very rigorous treatment, and all the side effects that come with it...you have much to share with those just coming in, and the ones of us who are still being treated (I've finished 35 rounds of rads with amifostine, and 3 Cisplatin infusions so far, with 3 more to go...I have NPC, Stage III)...
I went a lifetime without the need of anti-depressants, but when offered, I said "why not"...I'll do anything to make this road trip easier...and they have helped, I think. They certainly can't hurt anything, so giving them a try is well worth it, in my mind.
I also think you will find you have so much share here, since you've been thru treatment already...you'll find a lot of satisfaction in helping those who are new.
p
PS...In my mind there is no such thing as whining on this board...everybody has been or is going thru a LOT emotionally and physically...there is always someone here who has walked that path ahead of you.0 -
The Blahs
First of all, I agree with some of the other comments: That's why God made antidepressants. Sometimes in our lives we get up against that old "I don't want to wall". This is so understandable especially when a person has been through what you have been along with the stress of not knowing what the future might bring...however none of us do know the future no matter what we are or are not dealing with. It can be such a stalemate when we know in our logical minds that being as active as we possibly can, both physically and mentally, helps stave off the blues but our emotional side just won't let us break through that wall. OK, I am rambling but I do think there may be a time in our lives that the little boost that taking the appropriate antidepressant can work wonders until we get back on our feet again. My husband who had his BOT cancer treated with chemo and radiation finishing in February this year seems to be in about the same place you are. He gets discouraged that he is not "well" yet despite the fact that his physicians told him up front about the radiation being there to just keep giving and giving for some time after. Keep your chin up and your mind open to the options that you have. Are you a paintslinger by trade? Perhaps you could pick up a small paintbrush, canvas and easel or watercolor paper and express some of your emotion in that way? Just a thought.0 -
matt's perspective
Hi Paintslinger,
Clean PET scan, 10-year old son you adore, hey things are looking good for you. Being bored and depressed comes with our treatment; it just isn’t highlighted on the brochures. I had to fill out one of those pre-visit checklist in my chemo onc office yesterday, I didn’t check depressed or bored but I did check worried and anxious (and wrote in the margins a “little bit”). I think we can expect to experience a whole gamete of mental and physical issues being part of this club. For me they mostly come and go, while difficult, I try to look at these things like getting older. There are things I’ll never do again, but who cares, I can’t live in the past. As silly as it sounds I try to live in the present (PEG navel, no taste, no spit, warts and all).
Enough of my soap box, there are very nice medications for depression, matter-of-fact I belong to the Lorazapam club for anxiety (I hated PET scans and the mask). If you visit this site and read the threads you will realize how incredibly fortunate you are. I wish you the best and hope you can find the correct turn out of your maze.
Best,
Matt0 -
Thanks and yupalaskanjan said:The Blahs
First of all, I agree with some of the other comments: That's why God made antidepressants. Sometimes in our lives we get up against that old "I don't want to wall". This is so understandable especially when a person has been through what you have been along with the stress of not knowing what the future might bring...however none of us do know the future no matter what we are or are not dealing with. It can be such a stalemate when we know in our logical minds that being as active as we possibly can, both physically and mentally, helps stave off the blues but our emotional side just won't let us break through that wall. OK, I am rambling but I do think there may be a time in our lives that the little boost that taking the appropriate antidepressant can work wonders until we get back on our feet again. My husband who had his BOT cancer treated with chemo and radiation finishing in February this year seems to be in about the same place you are. He gets discouraged that he is not "well" yet despite the fact that his physicians told him up front about the radiation being there to just keep giving and giving for some time after. Keep your chin up and your mind open to the options that you have. Are you a paintslinger by trade? Perhaps you could pick up a small paintbrush, canvas and easel or watercolor paper and express some of your emotion in that way? Just a thought.
alaskanjan,
Thanks for the kind words of encouragement and support. Yeah, I'm a painter/illustrator. Yet another way I've been blessed is that I have work in collections all over the country and abroad (four countries and counting). I've always had to do something else to support myself, however. I have an M.S. in zoology and even taught for a while. I'm currently working at Home Depot (Yes, I've got a master's degree and I'm working at Home Depot...any port in a storm). The only time I'm even CLOSE to happy is when I'm with my son or painting. I'm especially bored (after this:the cancer, etc.) at work because you could train a german shepherd to do what I do most of the day. Again, I guess I should be happy just to HAVE a job given the state of the economy.
Thanks again and have a great day,
Paul0 -
FunnyPaintslinger said:Thanks and yup
alaskanjan,
Thanks for the kind words of encouragement and support. Yeah, I'm a painter/illustrator. Yet another way I've been blessed is that I have work in collections all over the country and abroad (four countries and counting). I've always had to do something else to support myself, however. I have an M.S. in zoology and even taught for a while. I'm currently working at Home Depot (Yes, I've got a master's degree and I'm working at Home Depot...any port in a storm). The only time I'm even CLOSE to happy is when I'm with my son or painting. I'm especially bored (after this:the cancer, etc.) at work because you could train a german shepherd to do what I do most of the day. Again, I guess I should be happy just to HAVE a job given the state of the economy.
Thanks again and have a great day,
Paul
Well Paul...I envisioned you being a house painter not an artist! I got a big laugh out of my advice to you after I saw your profession! Anyway, I agree, any job right now is better than none and I know things have to get better since the economy can't get much worse. Happy to know of the joy your son gives you, I hope that he is coping ok with your cancer. You have so much to look forward to...hang in there. Jan0 -
Hi Paul
I've said many times that Lorazepam has been my new BFF. We each have our own story and anxieties. When I started my journey in January, the ENT said cancer in my lower jaw was treatable and curable. I had NO IDEA how difficult the journey would be. During a 19 hour surgery my jaw was removed and reconstructed using the fibula from my leg and titanium. I was intentionally kept in coma 4 days, ICU 8 days total 2 week hospital stay. Hated the trach, what a blessing when it was gone. Didn't pass swallow test so left with PEG, I struggled with my 1st chemo treatment and if there was a side effect of radiation I felt like I had it. Developed shingles, thrush, staph in the leg wound and worst of all week 1 my lips developed huge sores and seemed like they were turned inside out, that lasted til post rad. Lost more than half my teeth in surgery. Fell 1 nite causing small break in my good ankle. I'm now 4 weeks out from rad/chemo. Wish I had found this site early on. Your mental health is every bit as important as physical. In fact, thanks for letting me vent!0 -
Exactlyhwt said:Hi Paul
I've said many times that Lorazepam has been my new BFF. We each have our own story and anxieties. When I started my journey in January, the ENT said cancer in my lower jaw was treatable and curable. I had NO IDEA how difficult the journey would be. During a 19 hour surgery my jaw was removed and reconstructed using the fibula from my leg and titanium. I was intentionally kept in coma 4 days, ICU 8 days total 2 week hospital stay. Hated the trach, what a blessing when it was gone. Didn't pass swallow test so left with PEG, I struggled with my 1st chemo treatment and if there was a side effect of radiation I felt like I had it. Developed shingles, thrush, staph in the leg wound and worst of all week 1 my lips developed huge sores and seemed like they were turned inside out, that lasted til post rad. Lost more than half my teeth in surgery. Fell 1 nite causing small break in my good ankle. I'm now 4 weeks out from rad/chemo. Wish I had found this site early on. Your mental health is every bit as important as physical. In fact, thanks for letting me vent!
HWT,
Vent?! You're not venting given everything that you're going through. That's exactly what I was talking about. I'm walking around feeling like this every day and my treatment (while rough at times) was a walk in the park compared to what some of you brave, wonderful folks are going through (or, indeed are going through). Obviously, you're keeping a good attitude about everything. I sincerely hope that everything gets better for you. Thanks for the words of support and thankYOU for taking the time to respond to my earlier "whine-fest".
Paul0 -
Blahhhh
Welcome Paul,
I'm not one that gets depressed, at least for more than a few minutes.
But one possibility of what you are feeling could be a little separation anxiety.
Think about it..you have been the star for several months. Ecerything is about you, each and every day. People poking, prodding, zapping and monitoring you.
Then one day, treatment is done, you are kind of cut loose... You are basically on your own to deal with the reality. Before, you rarely had time to think or ponder your situation...now that's all you have is time.
My brief history...
Jan2009
Dx STGIII SCC HPV+ Tonsil Cancer an a lymphnode..
Nine weeks (three week cycles) Cisplatin, Taxotere, and 5FU
Seven weeks of weekly Carboplatin, and daily rads with Amifostine Injections in the stomach each of those days.
Tx complete Jun2009, clean and clear on all scopes, CT's and PET's since.
You are correct in your logic, we share a bond... If you haven't been there, or a care giver, you can't really and totally relate.
Best,
John0 -
me too
I was pretty much the same way. my sister in law suggested i do a daily thank full journal. take a moment each morning in a small journal book on a separate page and write down 10 things you are thankful/grateful for. each day do a separate page and they items can be the same as before. it worked wonders for me as at makes me think of items that you expect to have each day... of example even not many years later i still think of the "i am thankful for the sun rise each and every day".
worked very well for me.
good luck with finding help
john0 -
star?Skiffin16 said:Blahhhh
Welcome Paul,
I'm not one that gets depressed, at least for more than a few minutes.
But one possibility of what you are feeling could be a little separation anxiety.
Think about it..you have been the star for several months. Ecerything is about you, each and every day. People poking, prodding, zapping and monitoring you.
Then one day, treatment is done, you are kind of cut loose... You are basically on your own to deal with the reality. Before, you rarely had time to think or ponder your situation...now that's all you have is time.
My brief history...
Jan2009
Dx STGIII SCC HPV+ Tonsil Cancer an a lymphnode..
Nine weeks (three week cycles) Cisplatin, Taxotere, and 5FU
Seven weeks of weekly Carboplatin, and daily rads with Amifostine Injections in the stomach each of those days.
Tx complete Jun2009, clean and clear on all scopes, CT's and PET's since.
You are correct in your logic, we share a bond... If you haven't been there, or a care giver, you can't really and totally relate.
Best,
John
John,
Thanks for the words of encouragement and advice. I'm glad that you're doing well. My question, however, is how in the world did you feel like a "star" going through that?! I was a borderline hypochondriac (and suffer from some hellacious mood swings: see my earlier comment about my life being a sit-com)to begin with and get nervous even going INTO a hospital (not in small part because of all the critters that are floating around in one). I'm not trying to scare anybody just coming into this, but it was an extremely unpleasant experience for me personally. I'm just thankful that the hospital I went to for treatment had some absolutely wonderful staff members(both doctors and nurses) who tried to do whatever they could to make me comfortable through the process. I also met some really cool people who were going through the same thing we all are, i.e., patients.
I really didn't like all the attention either. Just the THOUGHT of someone fawning all over me because I have cancer kind of creeps me out. I remember that every time I went in (I went in three times in addition to treatments to be hydrated because I couldn't even keep water down at one point) I just looked around thinking "My God, is this actually happening?" It was like watching some bad HBO movie. Having said that, I'll just repeat--with the risk of sounding positively maudlin-- that the staff at the the hospital (I hate hospitals--hell...who doesn't?--but I still drop by to see some of them now and again and thank them for all that they did) were like angels sent from Heaven.
But having found this site and some more really cool people, I might have found just what I need at this point in this journey. And if I can help some other folks in some small way who are about to go through this (or are already going through it), that's even better. We've all just got to remember that a rut is just a grave with the ends knocked off! I can't remember who said that, but I've always loved that expression!
Thanks again,
Paul0 -
This site is plum full of very cool people....Paintslinger said:star?
John,
Thanks for the words of encouragement and advice. I'm glad that you're doing well. My question, however, is how in the world did you feel like a "star" going through that?! I was a borderline hypochondriac (and suffer from some hellacious mood swings: see my earlier comment about my life being a sit-com)to begin with and get nervous even going INTO a hospital (not in small part because of all the critters that are floating around in one). I'm not trying to scare anybody just coming into this, but it was an extremely unpleasant experience for me personally. I'm just thankful that the hospital I went to for treatment had some absolutely wonderful staff members(both doctors and nurses) who tried to do whatever they could to make me comfortable through the process. I also met some really cool people who were going through the same thing we all are, i.e., patients.
I really didn't like all the attention either. Just the THOUGHT of someone fawning all over me because I have cancer kind of creeps me out. I remember that every time I went in (I went in three times in addition to treatments to be hydrated because I couldn't even keep water down at one point) I just looked around thinking "My God, is this actually happening?" It was like watching some bad HBO movie. Having said that, I'll just repeat--with the risk of sounding positively maudlin-- that the staff at the the hospital (I hate hospitals--hell...who doesn't?--but I still drop by to see some of them now and again and thank them for all that they did) were like angels sent from Heaven.
But having found this site and some more really cool people, I might have found just what I need at this point in this journey. And if I can help some other folks in some small way who are about to go through this (or are already going through it), that's even better. We've all just got to remember that a rut is just a grave with the ends knocked off! I can't remember who said that, but I've always loved that expression!
Thanks again,
Paul
You DO have a lot to offer here, because you've been through treatment and came out the other side....there is something very satisfying in helping others get thru the rough times...How wonderful that many folks here have stayed to lend their hands to walk us newbies thru our treatments....and have stayed here for years after their own treatment is finished!
I honestly don't know what I would have done without all of them...
p0 -
OK...Paintslinger said:star?
John,
Thanks for the words of encouragement and advice. I'm glad that you're doing well. My question, however, is how in the world did you feel like a "star" going through that?! I was a borderline hypochondriac (and suffer from some hellacious mood swings: see my earlier comment about my life being a sit-com)to begin with and get nervous even going INTO a hospital (not in small part because of all the critters that are floating around in one). I'm not trying to scare anybody just coming into this, but it was an extremely unpleasant experience for me personally. I'm just thankful that the hospital I went to for treatment had some absolutely wonderful staff members(both doctors and nurses) who tried to do whatever they could to make me comfortable through the process. I also met some really cool people who were going through the same thing we all are, i.e., patients.
I really didn't like all the attention either. Just the THOUGHT of someone fawning all over me because I have cancer kind of creeps me out. I remember that every time I went in (I went in three times in addition to treatments to be hydrated because I couldn't even keep water down at one point) I just looked around thinking "My God, is this actually happening?" It was like watching some bad HBO movie. Having said that, I'll just repeat--with the risk of sounding positively maudlin-- that the staff at the the hospital (I hate hospitals--hell...who doesn't?--but I still drop by to see some of them now and again and thank them for all that they did) were like angels sent from Heaven.
But having found this site and some more really cool people, I might have found just what I need at this point in this journey. And if I can help some other folks in some small way who are about to go through this (or are already going through it), that's even better. We've all just got to remember that a rut is just a grave with the ends knocked off! I can't remember who said that, but I've always loved that expression!
Thanks again,
Paul
I just meant STAR as in the center of attention.... Not that you actually felt like or wanted to be the STAR..., LOL.
JG0 -
ArtistPaintslinger said:Thanks and yup
alaskanjan,
Thanks for the kind words of encouragement and support. Yeah, I'm a painter/illustrator. Yet another way I've been blessed is that I have work in collections all over the country and abroad (four countries and counting). I've always had to do something else to support myself, however. I have an M.S. in zoology and even taught for a while. I'm currently working at Home Depot (Yes, I've got a master's degree and I'm working at Home Depot...any port in a storm). The only time I'm even CLOSE to happy is when I'm with my son or painting. I'm especially bored (after this:the cancer, etc.) at work because you could train a german shepherd to do what I do most of the day. Again, I guess I should be happy just to HAVE a job given the state of the economy.
Thanks again and have a great day,
Paul
Another here,...
I am an artist also, not by profession, just the love of doing it....
But I do like to dabble in acrylics and prismacolor;
Key West Cookie Company
Key West Awnings
Mayfaire Swan
Shelley & Sweet Pea
JP & Taz
I did belong to a guild awhile back, but mainly just do commissions or things that I like these days.
The above links give you and idea of my work... As you can see, I love to fish by the other photos on the links...
JG0 -
Hey Paul,fisrpotpe said:me too
I was pretty much the same way. my sister in law suggested i do a daily thank full journal. take a moment each morning in a small journal book on a separate page and write down 10 things you are thankful/grateful for. each day do a separate page and they items can be the same as before. it worked wonders for me as at makes me think of items that you expect to have each day... of example even not many years later i still think of the "i am thankful for the sun rise each and every day".
worked very well for me.
good luck with finding help
john
As already said by many, this site is extremely helpful going through the journey. I do hope you find help from those who have gone before you...take care!0 -
You've got that rightKareGiver said:Hey Paul,
As already said by many, this site is extremely helpful going through the journey. I do hope you find help from those who have gone before you...take care!
This site left "extremely helpful" three or four counties ago! I can't believe how much it helps to discuss these matters with folks who have been through it or are going through it. It's also really cool that finding yourself in the "been there, done that, bought several t-shirts" camp could give you the ammunition to help some folks that are new to this battle. Because it is indeed a battle as we all know. For some people this is the most traumatic and difficult thing that has ever happened to them. It's great to know that you can help someone out when they really need it.
Take care,
Paul0 -
Nice workSkiffin16 said:Artist
Another here,...
I am an artist also, not by profession, just the love of doing it....
But I do like to dabble in acrylics and prismacolor;
Key West Cookie Company
Key West Awnings
Mayfaire Swan
Shelley & Sweet Pea
JP & Taz
I did belong to a guild awhile back, but mainly just do commissions or things that I like these days.
The above links give you and idea of my work... As you can see, I love to fish by the other photos on the links...
JG
John,
I just checked out your work on those sites. Good, good stuff! Do you have any formal training? Looks like it. You still going at it? I hope so. You said that you were a member of a guild. I'm currently part of a gallery operating in Fell's Point in Baltimore. I'll post a few of my things when I get a chance.
Take care,
Paul0 -
InherentPaintslinger said:Nice work
John,
I just checked out your work on those sites. Good, good stuff! Do you have any formal training? Looks like it. You still going at it? I hope so. You said that you were a member of a guild. I'm currently part of a gallery operating in Fell's Point in Baltimore. I'll post a few of my things when I get a chance.
Take care,
Paul
Mostly inherent and on my own as for the talent...
I have taken a few art classes while in college. But as you are aware I'm sure...most I really didn't learn much or get any serious attention because I was better than most others in the class.
So I usually took an art class knowing that more than likely I'd get an A. that would be to offset a harder class that I knew I might only get a C in..., LOL... keeping the old GPA higher.
I have belonged to a few guilds and galleries, mainly to stay active and inspired. But I don't so much anylonger because working full time, I can usually only donate week-end time.
So I tend to like my week-ends a lot, also during some of those times I was in the Military Reserves which requird another week-end.
As for the "sites", it's actually this site, they are in my Expressions...I have several more in there if you wanted to look further.
Night Heron's
It's also a good place to stick your photo's for sharing and use HTML to make the links.
Thanks for the compliments...
Best,
John0
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