› Forums › General Melanoma Community › soft palate update
- This topic has 30 replies, 10 voices, and was last updated 13 years, 11 months ago by
Becky.
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- October 6, 2010 at 5:54 pm
I am nervous to post this, stage ones are not supposed to take up board space with stupid worries (was anon for this reason and also because I did not want to bring family along for this latest scare) -but here goes.
I am nervous to post this, stage ones are not supposed to take up board space with stupid worries (was anon for this reason and also because I did not want to bring family along for this latest scare) -but here goes.
The ENT specialist felt in my mouth, decided not to biopsy and wrote a prescription for pantaloc. He is very confident the lump is normal, I have to trust him on this. For my peace of mind he agreed to look at it again in three months or if my swallowing problems get worse. In the mean time, I had a physical Monday – have unexplained pain and bleeding -so now I'm waiting for a pelvic ultrasound. Thankfully I'm getting better at taking this one step at a time and am not imagining this latest problem is mel, (and unless mel is ever confirmed, I will not mention it again here again). Thank you to those of you who helped me through this. I am very sorry for being so thoughtless, I really am out living my life.. just keep the dark bits for here, linda
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- October 6, 2010 at 6:38 pm
Linda,
This board is for ALL stages, and your concerns and fears are just as valid as anyone elses. You've been around here long enough to see the most unlikely things happen. Hell.. I was stage I for TWENTY years! Proof that even if you go years without thinking of melanoma it can enter your life again.
AND…in my opinion, it's better for you to express your fears here than say..with your family or friends who might not understand. So often out there in our circle of friends, people think that it's just a matter of..cutting the dang thing out and never thinking of it again. They don't understand, the way we do, how every ache and pain and oddity brings cancer to our minds. And frankly..for MOST of my friends and family, I'm kind of ok with that. I don't want' them to neccessarily know how serious things are with me, or how much cancer might intrude. Bad enough that melanoma can mess with my life, why should it mess with my loved ones too?
But every one of us here, stage 1 to 4, has had at least ONE moment of fear over some lump or bump or cough or bad scan. We all understand why a lump would scare you linda, and not only that, none of us is going to say.."oh it's nothing, it'll clear up" Once melanoma is in your life, you can't ignore anything.
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- October 6, 2010 at 6:38 pm
Linda,
This board is for ALL stages, and your concerns and fears are just as valid as anyone elses. You've been around here long enough to see the most unlikely things happen. Hell.. I was stage I for TWENTY years! Proof that even if you go years without thinking of melanoma it can enter your life again.
AND…in my opinion, it's better for you to express your fears here than say..with your family or friends who might not understand. So often out there in our circle of friends, people think that it's just a matter of..cutting the dang thing out and never thinking of it again. They don't understand, the way we do, how every ache and pain and oddity brings cancer to our minds. And frankly..for MOST of my friends and family, I'm kind of ok with that. I don't want' them to neccessarily know how serious things are with me, or how much cancer might intrude. Bad enough that melanoma can mess with my life, why should it mess with my loved ones too?
But every one of us here, stage 1 to 4, has had at least ONE moment of fear over some lump or bump or cough or bad scan. We all understand why a lump would scare you linda, and not only that, none of us is going to say.."oh it's nothing, it'll clear up" Once melanoma is in your life, you can't ignore anything.
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- October 6, 2010 at 7:22 pm
Oh Linda I agree with Dian totally. This place helped me recently come out of a very dark and deep lonely place I found myself. still sort of struggling, but non the less I am back. (I know others will say OH NO SHE IS BACK – groaaaan) ha.
as for your pelvic problems, same here. Dismal failure the ultra sound was. and I had my dentist check a spot I noticed on my gum, to the point I ok's a xray) to find out it was siimply a agalmum (sp) tattoo. I had to know, I had to find out, and what you are doing is perfect.
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- October 6, 2010 at 7:22 pm
Oh Linda I agree with Dian totally. This place helped me recently come out of a very dark and deep lonely place I found myself. still sort of struggling, but non the less I am back. (I know others will say OH NO SHE IS BACK – groaaaan) ha.
as for your pelvic problems, same here. Dismal failure the ultra sound was. and I had my dentist check a spot I noticed on my gum, to the point I ok's a xray) to find out it was siimply a agalmum (sp) tattoo. I had to know, I had to find out, and what you are doing is perfect.
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- October 6, 2010 at 7:43 pm
Linda,
I'm glad the Dr. felt it was nothing to do with mel.
This is the place to vent! Part of having any stage of Melanoma is that you have to be vigilant. I went 27 years stage 1!! I never dreamed it would come back that far out. Now every lump and bump sends me into a tizzy.
I hope your other issues turn out to be just a scare also. Please, don't ever feel you shouldn't post something!!
Linda
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- October 6, 2010 at 7:43 pm
Linda,
I'm glad the Dr. felt it was nothing to do with mel.
This is the place to vent! Part of having any stage of Melanoma is that you have to be vigilant. I went 27 years stage 1!! I never dreamed it would come back that far out. Now every lump and bump sends me into a tizzy.
I hope your other issues turn out to be just a scare also. Please, don't ever feel you shouldn't post something!!
Linda
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- October 7, 2010 at 12:28 am
Bcl, I have a pretty good idea of where you got that stage I idea, and I am happy to disagree with her. If you have a big imagination, every little thing can be scary. Stay vigilant, keep on top of that thing, and don't relax, better to get on top of things early. I am hoping it is just your imagination to be honest, but DON'T be lazy, or feel self conscious for bugging your doctors, or anybody here. They get paid just like everybody else(not as much as in America of course-I'm sure the vets there get paid more, but they should take you seriously and address your concerns) in the long run, an ounce of prevention is worth a pound of cure.
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- October 7, 2010 at 12:28 am
Bcl, I have a pretty good idea of where you got that stage I idea, and I am happy to disagree with her. If you have a big imagination, every little thing can be scary. Stay vigilant, keep on top of that thing, and don't relax, better to get on top of things early. I am hoping it is just your imagination to be honest, but DON'T be lazy, or feel self conscious for bugging your doctors, or anybody here. They get paid just like everybody else(not as much as in America of course-I'm sure the vets there get paid more, but they should take you seriously and address your concerns) in the long run, an ounce of prevention is worth a pound of cure.
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- October 7, 2010 at 10:44 am
Oh John – thanks, you are right, I do need to be on guard. ( And our docs do get paid less, and our vets.) As for the other stuff, I just thought you were hinting I was too thoughtless and was trying to let you see I get it. If that was not your intention, don't mind me, I'm a plank.:)
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- October 7, 2010 at 10:44 am
Oh John – thanks, you are right, I do need to be on guard. ( And our docs do get paid less, and our vets.) As for the other stuff, I just thought you were hinting I was too thoughtless and was trying to let you see I get it. If that was not your intention, don't mind me, I'm a plank.:)
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- October 7, 2010 at 12:47 am
I'm over my "bits" too- we should see if we can get them removed and try for a 2 for 1 discount, eh?
I really don't think anyone with valid concerns are labeled as "taking up space" on the board. You aren't SIATCL (I TOLD you that acronym wasn't pithy enough :P) I don't think that ANYONE would trivialise that concern, but I am very pleased to hear the assessment of the ENT.
Now, because I believe you are thinking that *I* feel this way, I'm going to publicly assure you that it is not the case, and reveal more of my personal feelings than I want to- but it's important that I do this for you. I told you a long time ago that for myself, stage 4 is the place to be- I don't worry about lumps, bumps or niggles of any description 😉 For that, I consider myself lucky. A long time ago someone said to me they didn't know what was worse- waiting for the shoe to drop and it actually happening, or waiting for it to drop and never having it happen. Personally, I prefer the way it happened for me. I had to face my mortality, not as a distant possibility, but as a "Holy shit- this is incurable" moment. Yes, there are still questions about the when and how (:P) but it had to be dealt with immediately, and then I was free to move on without it hanging over me all the time. It's emancipating in a strange way- I hope you know what I mean.
I'm luckier than you at the moment, because my current concerns are whether to have a "dry" lunch with friends, or whether to grab the bubbly which will mean I have to walk home with my occasionally dodgy left foot. Is the colour I put in my hair too bright in the sun? What am I going to cook for tea? Is my dex fat reducing? So no… I don't think you should be apologising at all, and frankly I'm annoyed that you feel like you need to. You and I are going to have words.
I'm the one with trivial concerns at the moment. Not you. Stage is irrelevant.
(And to end with a private joke, I say this to you "Phew! Thank goodness it's not brain mets!" :D)
NicOz (posting anonymously just because I can!)
xxx
PS- and have made my decision. Bubbly is packed, and I'm out the door for lunch- I'm even going to have one for Bonnie seeing as she's quite partial to it, and raise a glass to your promising news 🙂
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- October 7, 2010 at 11:03 am
Sweetheart, the very worst thing about all this is that I have upset you. ( Sucks too that my internet was down and it is 4 am and I am only now able to write to you – I'll sleep tomorrow, but in the meantime it looks like I don't care.)
I tried to be clever and let elmer know I thought I got his message but I was not clever enough to address it to him. .. I have explained on your blog how much I regret this. I know already you are more than generous and never question me when I get the gollywobbles, but my words today made none of that clear. I am so sorry hon, I hope you enjoyed your bubbly and were able to forget all this shit.
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- October 7, 2010 at 11:03 am
Sweetheart, the very worst thing about all this is that I have upset you. ( Sucks too that my internet was down and it is 4 am and I am only now able to write to you – I'll sleep tomorrow, but in the meantime it looks like I don't care.)
I tried to be clever and let elmer know I thought I got his message but I was not clever enough to address it to him. .. I have explained on your blog how much I regret this. I know already you are more than generous and never question me when I get the gollywobbles, but my words today made none of that clear. I am so sorry hon, I hope you enjoyed your bubbly and were able to forget all this shit.
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- October 7, 2010 at 12:47 am
I'm over my "bits" too- we should see if we can get them removed and try for a 2 for 1 discount, eh?
I really don't think anyone with valid concerns are labeled as "taking up space" on the board. You aren't SIATCL (I TOLD you that acronym wasn't pithy enough :P) I don't think that ANYONE would trivialise that concern, but I am very pleased to hear the assessment of the ENT.
Now, because I believe you are thinking that *I* feel this way, I'm going to publicly assure you that it is not the case, and reveal more of my personal feelings than I want to- but it's important that I do this for you. I told you a long time ago that for myself, stage 4 is the place to be- I don't worry about lumps, bumps or niggles of any description 😉 For that, I consider myself lucky. A long time ago someone said to me they didn't know what was worse- waiting for the shoe to drop and it actually happening, or waiting for it to drop and never having it happen. Personally, I prefer the way it happened for me. I had to face my mortality, not as a distant possibility, but as a "Holy shit- this is incurable" moment. Yes, there are still questions about the when and how (:P) but it had to be dealt with immediately, and then I was free to move on without it hanging over me all the time. It's emancipating in a strange way- I hope you know what I mean.
I'm luckier than you at the moment, because my current concerns are whether to have a "dry" lunch with friends, or whether to grab the bubbly which will mean I have to walk home with my occasionally dodgy left foot. Is the colour I put in my hair too bright in the sun? What am I going to cook for tea? Is my dex fat reducing? So no… I don't think you should be apologising at all, and frankly I'm annoyed that you feel like you need to. You and I are going to have words.
I'm the one with trivial concerns at the moment. Not you. Stage is irrelevant.
(And to end with a private joke, I say this to you "Phew! Thank goodness it's not brain mets!" :D)
NicOz (posting anonymously just because I can!)
xxx
PS- and have made my decision. Bubbly is packed, and I'm out the door for lunch- I'm even going to have one for Bonnie seeing as she's quite partial to it, and raise a glass to your promising news 🙂
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- October 7, 2010 at 10:26 am
Thank you everyone, you are so very very kind, but I am sorry to be so melodramatic ( have I said I'm Irish – I seem cursed with a soul that thinks too deeply about EVERYTHING:) To be honest, my insecurity ( this time) comes from from an off the cuff comment by EF that I have stewed on. He could have meant nothing like what I took out of it, but it did make me pause and reflect on how I handle myself here. For instance, my writing still hoping for stage one false alarm, seems now like a very rude way of saying I don't want to join the club; I'd much rather be a hanger on. This while warriors are dying and posters are asking for help to find doctors and hospitals. I could have been more sensitive and kept that particular hope within the post. I feel I should know this stuff by now and am frustrated with myself.
But another reason I was reluctant to post is that it is hard to get over my reluctance to bump an important post off the first page..the new format irks me. ( I am doing it now I am sure)
So after all this soul searching, I think this place could do with a question area for stage ones – I know there is a stage one board, but it is not directly liked from here that I know of. I have seen question threads work so effectively in other applications. ( flickr help threads come to mind) Food for thought I hope.
Thanks again everyone, I feel most humbled and blessed by your support. linda
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- October 7, 2010 at 1:16 pm
Your predicament explains a reason the Stage One mail list was formed 8 years ago. Not to exclude, as has been often mentioned, but due to Stage One patients guilt when sharing as they watch others navigate terribly difficult circumstance. It's a place to ask questions, express anxiety that may be out of proportion to the diagnosis compared to the issues others face. It's judgment free and open for any fear, question or vent no matter how small.
Most Stage 1 patients hurt for others and after they post legitimate questions/fears in this forum they can feel uncomfortable and worry they have upset others. You were fortunate that you received very thoughtful and compassionate response- that has not always been the Stage One experience in the past. In addition, patients with anxiety will become even more anxious when they read former Stage One patients sharing their stories of progression-another consideration when forming the list. Despite the sometimes nasty references by disgruntled individuals– the Stage One list has served hundreds of anxious patients very well.
You have legitimate concern, you should be able to post guilt free on the MRF board. You have all the same fears with your cancer experience as any other Melanoma patient, even with a good prognosis. Good luck with your current circumstance, Linda. I hope that it resolves in the most favorable way.
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- October 8, 2010 at 5:52 am
Thanks, you are right, I received beautiful and generous replies. I am deeply moved by all of them.
I still feel terribly reluctant to post here though – everything goes to the top.
Thank you for seeing a need and addressing it with your mail list , you and Janner have created a valuable resource. I think in my case though, for my sanity, I seem to need many voices to help me move through the planning of medical tests. I mean no offense, and am not trying to underestimate the support you offer, but I am hesitant to post my questions to early stage patents only. (This time I hoped to hear from patients who had experience with mouth biopsies, in the past it was heart and eye tests.)
When I say I'd like a stage one question area here, I could see this working well in tandem with your group. By having an organized area for initial questions here -even if the conversation moved ultimately over to your group, as it does already in many cases – we could benefit from the huge generosity and knowledge base of our patients and care givers. Without bumping the appeals for assistance off the board. (And since I'm soapbox planning here, maybe those who wanted to could receive email notifications of waiting questions…)
Thanks again for your kind wishes, linda
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- October 8, 2010 at 2:05 pm
There is a board on the International Melanoma Foundation
http://forum.melanomaintl.org/toastforums/toast.asp
it has different boards for stage 1/2 and 3/4. Could be another place to ask quesitons.
ps..I don't think you should feel reluctant to post here, although I understand.
Becky
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- October 8, 2010 at 2:05 pm
There is a board on the International Melanoma Foundation
http://forum.melanomaintl.org/toastforums/toast.asp
it has different boards for stage 1/2 and 3/4. Could be another place to ask quesitons.
ps..I don't think you should feel reluctant to post here, although I understand.
Becky
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- October 8, 2010 at 5:52 am
Thanks, you are right, I received beautiful and generous replies. I am deeply moved by all of them.
I still feel terribly reluctant to post here though – everything goes to the top.
Thank you for seeing a need and addressing it with your mail list , you and Janner have created a valuable resource. I think in my case though, for my sanity, I seem to need many voices to help me move through the planning of medical tests. I mean no offense, and am not trying to underestimate the support you offer, but I am hesitant to post my questions to early stage patents only. (This time I hoped to hear from patients who had experience with mouth biopsies, in the past it was heart and eye tests.)
When I say I'd like a stage one question area here, I could see this working well in tandem with your group. By having an organized area for initial questions here -even if the conversation moved ultimately over to your group, as it does already in many cases – we could benefit from the huge generosity and knowledge base of our patients and care givers. Without bumping the appeals for assistance off the board. (And since I'm soapbox planning here, maybe those who wanted to could receive email notifications of waiting questions…)
Thanks again for your kind wishes, linda
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- October 7, 2010 at 1:16 pm
Your predicament explains a reason the Stage One mail list was formed 8 years ago. Not to exclude, as has been often mentioned, but due to Stage One patients guilt when sharing as they watch others navigate terribly difficult circumstance. It's a place to ask questions, express anxiety that may be out of proportion to the diagnosis compared to the issues others face. It's judgment free and open for any fear, question or vent no matter how small.
Most Stage 1 patients hurt for others and after they post legitimate questions/fears in this forum they can feel uncomfortable and worry they have upset others. You were fortunate that you received very thoughtful and compassionate response- that has not always been the Stage One experience in the past. In addition, patients with anxiety will become even more anxious when they read former Stage One patients sharing their stories of progression-another consideration when forming the list. Despite the sometimes nasty references by disgruntled individuals– the Stage One list has served hundreds of anxious patients very well.
You have legitimate concern, you should be able to post guilt free on the MRF board. You have all the same fears with your cancer experience as any other Melanoma patient, even with a good prognosis. Good luck with your current circumstance, Linda. I hope that it resolves in the most favorable way.
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- October 7, 2010 at 10:26 am
Thank you everyone, you are so very very kind, but I am sorry to be so melodramatic ( have I said I'm Irish – I seem cursed with a soul that thinks too deeply about EVERYTHING:) To be honest, my insecurity ( this time) comes from from an off the cuff comment by EF that I have stewed on. He could have meant nothing like what I took out of it, but it did make me pause and reflect on how I handle myself here. For instance, my writing still hoping for stage one false alarm, seems now like a very rude way of saying I don't want to join the club; I'd much rather be a hanger on. This while warriors are dying and posters are asking for help to find doctors and hospitals. I could have been more sensitive and kept that particular hope within the post. I feel I should know this stuff by now and am frustrated with myself.
But another reason I was reluctant to post is that it is hard to get over my reluctance to bump an important post off the first page..the new format irks me. ( I am doing it now I am sure)
So after all this soul searching, I think this place could do with a question area for stage ones – I know there is a stage one board, but it is not directly liked from here that I know of. I have seen question threads work so effectively in other applications. ( flickr help threads come to mind) Food for thought I hope.
Thanks again everyone, I feel most humbled and blessed by your support. linda
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