Comments on: An Unexpected Photography Project! http://thephotographerblog.com/418/an-unexpected-photography-project/ Improve your photography with easy to digest DSLR tips Thu, 17 May 2012 13:02:11 +0000 hourly 1 http://wordpress.org/?v=3.3.2 By: Claire http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-8/#comment-33815 Claire Thu, 17 May 2012 13:02:11 +0000 http://thephotographerblog.com/?p=418#comment-33815 I am glad to be appreciated, if only in this club. I have tremendous feelings of isolation. I am single and now living alone. I have a wonderful group of friends who got me through this. Many are cancer survivors. But they think I am just slacking now. They don't get that my idea of a fun place is not being under this heavy wet blanket. I am wondering if the secretion component of this is part of the problem. There is such a lack of information. If I didn't have this site I would have gone under by now. Keep it going. I almost panic when there is nothing going on. Feel good. C I am glad to be appreciated, if only in this club. I have tremendous feelings of isolation. I am single and now living alone. I have a wonderful group of friends who got me through this. Many are cancer survivors. But they think I am just slacking now. They don’t get that my idea of a fun place is not being under this heavy wet blanket. I am wondering if the secretion component of this is part of the problem. There is such a lack of information. If I didn’t have this site I would have gone under by now. Keep it going. I almost panic when there is nothing going on. Feel good.
C

]]> By: Linda http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-8/#comment-33782 Linda Thu, 17 May 2012 03:30:39 +0000 http://thephotographerblog.com/?p=418#comment-33782 Thanks Claire for understanding,sometimes I think we are the only ones that truly understand. You can not explain this in ways that others can understand. Because it's so rare with not really a lot of answers other than we really don't know others don't get it. I am so thankful for this site. It brings together others who have been or there now that can honestly say "I know how you feel". Linda Thanks Claire for understanding,sometimes I think we are the only ones that truly understand. You can not explain this in ways that others can understand. Because it’s so rare with not really a lot of answers other than we really don’t know others don’t get it. I am so thankful for this site. It brings together others who have been or there now that can honestly say “I know how you feel”.

Linda

]]> By: Claire http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-7/#comment-33650 Claire Tue, 15 May 2012 18:29:51 +0000 http://thephotographerblog.com/?p=418#comment-33650 Tired of being tired. Linda, you said it all in that sentence. No one understands that this is not the kind of tired that a nap will fix. Hooray for us and our understanding of each other. Tired of being tired. Linda, you said it all in that sentence. No one understands that this is not the kind of tired that a nap will fix. Hooray for us and our understanding of each other.

]]> By: Linda http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-7/#comment-33636 Linda Tue, 15 May 2012 15:38:07 +0000 http://thephotographerblog.com/?p=418#comment-33636 Dan, I too am in NC. My right vocal cord is completely paralysed. About 6 months after my 2nd tumor surgery I could barely whisper and had horrible swallowing issues. My dr who is in Winston Salem did a implant that pushes my right vocal cord over so that it touches. They do a twilight sleep so that you can talk to them to get the size of the implant correct. Think about this I can highly recommend it. My voice is not perfect but very close to normal and it helped my swallowing greatly. These are the same doctors who performed my first tumor surgery but they are also the ones who found me a wonderful dr to tackle my second one. They take care of me now monitoring my 3rd tumor. Dan, the surgery was nothing compared to everything else. Home by noon. Could not speak for a week but after that I made up for a lot of lost time. Take care and I too am tired. Sometimes I really get tired of just being tired so I fully understand. If you would like the name and number of my dr. I will be glad to share. After all I have my own wing at their offices, I tell them that I just need a name tag somewhere. Of course they think I'm a nut but they do take very good care of me with my follow ups and monitoring the size of this 3rd tumor. linda Dan,
I too am in NC. My right vocal cord is completely paralysed. About 6 months after my 2nd tumor surgery I could barely whisper and had horrible swallowing issues. My dr who is in Winston Salem did a implant that pushes my right vocal cord over so that it touches. They do a twilight sleep so that you can talk to them to get the size of the implant correct. Think about this I can highly recommend it. My voice is not perfect but very close to normal and it helped my swallowing greatly. These are the same doctors who performed my first tumor surgery but they are also the ones who found me a wonderful dr to tackle my second one. They take care of me now monitoring my 3rd tumor. Dan, the surgery was nothing compared to everything else. Home by noon. Could not speak for a week but after that I made up for a lot of lost time. Take care and I too am tired. Sometimes I really get tired of just being tired so I fully understand. If you would like the name and number of my dr. I will be glad to share. After all I have my own wing at their offices, I tell them that I just need a name tag somewhere. Of course they think I’m a nut but they do take very good care of me with my follow ups and monitoring the size of this 3rd tumor.

linda

]]> By: Linda http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-7/#comment-33635 Linda Tue, 15 May 2012 15:24:37 +0000 http://thephotographerblog.com/?p=418#comment-33635 Fiona, Please make the travel. I too had to travel 8 hours to have my surgery for my 2nd tumor. It is hard to travel the distance but worth it to see the right doctors. Believe me not all doctors are the same. I have been very blessed in my journey to have had the best. I would not be here without that. As far as this thing being slow growing I am living proof that that does not always apply. I just think this thing is unpredictable because mine was not slow growing at all. Take care and keep us posted. Linda Fiona,
Please make the travel. I too had to travel 8 hours to have my surgery for my 2nd tumor. It is hard to travel the distance but worth it to see the right doctors. Believe me not all doctors are the same. I have been very blessed in my journey to have had the best. I would not be here without that. As far as this thing being slow growing I am living proof that that does not always apply. I just think this thing is unpredictable because mine was not slow growing at all. Take care and keep us posted.

Linda

]]> By: Fiona http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-7/#comment-33501 Fiona Mon, 14 May 2012 02:20:19 +0000 http://thephotographerblog.com/?p=418#comment-33501 Hello All Thank you for your kind thoughts of course I will be going to the appointment in Gainsville on the 18 th I will let you all know how I get on your all such an inspiration to me. I hope I can be as brave as you all are if they tell me I have to have some further treatments thank you for your heart felt support I appreciate the time and trouble you all take to keep in touch ;-) Fiona T Hello All
Thank you for your kind thoughts of course I will be going to the appointment in Gainsville on the 18 th I will let you all know how I get on your all such an inspiration to me.
I hope I can be as brave as you all are if they tell me I have to have some further treatments thank you for your heart felt support I appreciate the time and trouble you all take to keep in touch ;-)
Fiona T

]]> By: Linda H http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-7/#comment-33461 Linda H Sun, 13 May 2012 12:09:59 +0000 http://thephotographerblog.com/?p=418#comment-33461 Hi Fiona, I'm sure we have all had our moments of doubt but please don't skip your appointment. I understand the travel is difficult as I have to take time off work to travel for my appointments (4.5 hrs each way). I don't have small children, but that means you have more reasons to take good care of yourself. Just think of the unecessary worry you will have over the next few months if you don't go and you are lucky enough that it was a radiologist error. Best of luck I will be thinking of you on the 18th. Linda H Hi Fiona,

I’m sure we have all had our moments of doubt but please don’t skip your appointment. I understand the travel is difficult as I have to take time off work to travel for my appointments (4.5 hrs each way). I don’t have small children, but that means you have more reasons to take good care of yourself. Just think of the unecessary worry you will have over the next few months if you don’t go and you are lucky enough that it was a radiologist error.

Best of luck I will be thinking of you on the 18th.

Linda H

]]> By: Claire http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-7/#comment-33453 Claire Sun, 13 May 2012 05:17:35 +0000 http://thephotographerblog.com/?p=418#comment-33453 Fiona: As I said earlier, I had a headache almost simultaneously with my diagnosis and it was gone after the surgery. I had MRI/MRA and CT scans done with contrast. The pulsations you are hearing are just that. The tumor is vascular, so it is pulsing with your heartbeat. Make the committment to yourself to take care of yourself. It was explained to me that if I did not take care of the tumor, all of the problems you might have after surgery, at a time in your life you are able to deal with them, would eventually happen later at a time when you could not handle them. I know you have a long trip and children, but you can only see a doctor who knows how to handle this condition. You can't just trust to luck and let things take care of themselves. We are all with you. Fiona:
As I said earlier, I had a headache almost simultaneously with my diagnosis and it was gone after the surgery. I had MRI/MRA and CT scans done with contrast. The pulsations you are hearing are just that. The tumor is vascular, so it is pulsing with your heartbeat. Make the committment to yourself to take care of yourself. It was explained to me that if I did not take care of the tumor, all of the problems you might have after surgery, at a time in your life you are able to deal with them, would eventually happen later at a time when you could not handle them. I know you have a long trip and children, but you can only see a doctor who knows how to handle this condition. You can’t just trust to luck and let things take care of themselves. We are all with you.

]]> By: Robin http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-7/#comment-33445 Robin Sun, 13 May 2012 00:44:06 +0000 http://thephotographerblog.com/?p=418#comment-33445 Fiona - you are doing the right thing by seeing another doctor. I only had a few minor symptoms, too, but my primary care doctor scheduled me for an MRI. I did it, fully thinking it was just precautionary. I was glad after the fact that I went and they found the tumor while it was still small. I remember scheduling gamma knife surgery 3 weeks out was too long. I wanted to do something right away - but the neurosurgeon reminded me it was a slow growing tumor. It's also a slow healing process. I've learned those around me don't like to hear about it so much so it's great being able to voice things here and get responses in return. Robin Did they do a contrasting MRI? I think these are more accurate showing the glomus tumors because they are more vascular. Fiona – you are doing the right thing by seeing another doctor. I only had a few minor symptoms, too, but my primary care doctor scheduled me for an MRI. I did it, fully thinking it was just precautionary. I was glad after the fact that I went and they found the tumor while it was still small. I remember scheduling gamma knife surgery 3 weeks out was too long. I wanted to do something right away – but the neurosurgeon reminded me it was a slow growing tumor. It’s also a slow healing process. I’ve learned those around me don’t like to hear about it so much so it’s great being able to voice things here and get responses in return.

Robin

Did they do a contrasting MRI? I think these are more accurate showing the glomus tumors because they are more vascular.

]]> By: Linda H http://thephotographerblog.com/418/an-unexpected-photography-project/comment-page-7/#comment-33434 Linda H Sat, 12 May 2012 19:36:28 +0000 http://thephotographerblog.com/?p=418#comment-33434 Hi everyone, Thanks for confirming the pressure thing for me. Pat I know what you mean by the fullness. I have that too. All of the doctors I have seen say that they can see my tumor right behind my ear drum so the popping sensation makes sense I guess. Hope everyone has a great Mother's Day tomorrow and that your families cherish you. Linda H Hi everyone,

Thanks for confirming the pressure thing for me. Pat I know what you mean by the fullness. I have that too. All of the doctors I have seen say that they can see my tumor right behind my ear drum so the popping sensation makes sense I guess.

Hope everyone has a great Mother’s Day tomorrow and that your families cherish you.

Linda H

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