Just feeling scared at the moment

Tina Brown

Just remembered that this is a good place to come to for a rant or a moan. I'm not sure what I feel but I am very low at the moment. I am WAITING to go see my oncologist on Monday for my latest CT results and blood work. The numbers had risen last time so I am somewhat anxious. I went to my Primary care doctor (we call them GP's - general practioners) as I could not stop crying as I was feeling anxious about whether the cancer had returned. I explained to him that my stomach was bloated throughout the day and at night but seemed OKm in the morning. I had pains in the areas where I knew the cancer was - a thickening next to my liver and pain on the site where I had my chest drain. He told me that all of my symptoms were typical of "ANXIETY" and I am now on the highest does possible of anti-depressant called Citalapram 40mg. He also gave me diazapam (a fast acting sedative)

My stomach is still uncomfortable with the bloating but it is soft and squishy so my logic is telling me it is not ascites. Like Carlene I have wrist problems too and need to go in hospital for a procedure. The anti-depressant tablets have kicked in but I am so so fed up with my health. My body and my MIND is really struggling at the moment to give me any peace. I am seeing a counsellor (as I am also struggling to get over a relationship break-up)

You know sometimes it seems like everything has been thrown at me. My mum died 2 years ago, a very special relationship (with my soul mate) ended, my marriage is almost dead in the water and I have a cancer that can't be cured. I feel so desolate and frightened. I still have problems with bloating and think it is IBS but its the waiting for the next cancer check up which is now taking its toll.

I felt less anxious when I was actually on chemo than I do now its finished. How bizare?

Thank-you for listening, Tina xx

Sandy10

Tina,
I am so sorry you are
Tina,

I am so sorry you are feeling bad. I completely understand your fears. I get anxious before my recheck as I am sure we all do. It's ok to feel this way. don't beat yourself up about it at all!! You have been through a war and the threat of it starting again always looms over our heads BUT you are a strong women!!!!!!! After all that you have been through you are still putting up a fight!! We all get down and frustrated with things. Who wouldn't after going through what we have been through. Please know that you are not alone!!! With every hurdle, you have all of us at your side!!! We are a force to be reconed with!!!

I am so happy you are here!! I am new to the board and when i read some of these posts, it always helps me to know that everyone of you are here on this board. It has been a blessing to me to see that i am not alone in this. You have no idea how many lives that you have touched just by posting and being someones friend. You have encouraged others and have offered advice to many women. There are MANY people that appreciate you!!! They may not always tell you, but believe me you are loved and appreciated.

I will be praying for you and for good news at your appointment. I hope you feel better. I know it is SO easier said than done, but try to not think about it. Do something fun and crazy over the weekend!!!! And remember that we are always with you!!!!

Sandy

kikiz

Sandy10 said:

Tina,
I am so sorry you are
Tina,

I am so sorry you are feeling bad. I completely understand your fears. I get anxious before my recheck as I am sure we all do. It's ok to feel this way. don't beat yourself up about it at all!! You have been through a war and the threat of it starting again always looms over our heads BUT you are a strong women!!!!!!! After all that you have been through you are still putting up a fight!! We all get down and frustrated with things. Who wouldn't after going through what we have been through. Please know that you are not alone!!! With every hurdle, you have all of us at your side!!! We are a force to be reconed with!!!

I am so happy you are here!! I am new to the board and when i read some of these posts, it always helps me to know that everyone of you are here on this board. It has been a blessing to me to see that i am not alone in this. You have no idea how many lives that you have touched just by posting and being someones friend. You have encouraged others and have offered advice to many women. There are MANY people that appreciate you!!! They may not always tell you, but believe me you are loved and appreciated.

I will be praying for you and for good news at your appointment. I hope you feel better. I know it is SO easier said than done, but try to not think about it. Do something fun and crazy over the weekend!!!! And remember that we are always with you!!!!

Sandy

Tina,
I understand how you
Tina,
I understand how you feel. When I was on Chemo, it felt proactive but without the Chemo, I feel like I am just in a holding pattern to find out where the sneaky cancer cells will strike next. It is like a horror movie where you know the monster is somewhere in the house but can't figure out what door to open to get out. As for the anziety, I have a pharmacy in my house and after talking to other cancer survivors, I have found that we would be a druggies delight.

Keeping you in my prayers and hope you have a great weekend.

Lori

Lisa13Q

Dear Tina,
I am so glad you feel comfortable coming here and expressing how you feel. Anxiety and fear are TOTALLY normal prior to these meetings. If you didn't experience those feelings, I would think that isn't so normal. Cancer is a horrible disease on it's own when someone has a supportive family, but added on to your recent losses, I can't imagine how hard this is for you. Just remember we love you here, and this is a special place, even though it's on line, it's a kind of family. God loves you too...I don't know if you believe or not, but I think He's around. Your Mum is probably up there cheering you on as well....does shopping help when you're pre-occupied? I know buying stuff always helps me...perhaps it's time for a spree....Keep us posted...Lisa

leesag

Dear Tina,
What can I say, except, I'm there with you honey. (Well not physically, but spiritually and emotionally). I began seeing a therapist about a month and half ago because the anxiety of not doing anything was practically debilitating. And, having just had my three month check up, I'm pretty sure that nothing I say or even your GP says will have any long term effect on your fears. I, too,was very worried about ascites, it turns out its just fat. Who knew that one day I'd be relieved when the doctor told me that I was fat?

I'm on citalopram (daily) and ativan (for severe attacks). I also joined a 24 hour gym so I can walk away my stress anytime. I recently spent a few 11 p.m. hours there when my husband was in the hospital.

Hugs,

Leesa
PS: My oncologist told me several things that I have found to be true:

1) Not being on chemo is more stressful emotionally than actively treating the cancer with chemo. (A side note, I don't want to "treat" my cancer, I want to punish it, torture it, make it suffer the way it's made me suffer!)

2) Family and friends won't understand continued fears of recurrence. They will see you with hair and with energy doing all of the things you used to do, and use words like "HAD cancer" or "Cured" or "Remission" (Another side note, isn't it interesting that we say we are NED and not in remission?)

3) She told me to call her anytime the anxiety became overwhelming and she would set up blood work, reschedule appointments or even send me for a scan. Whatever I needed to feel comfortable in my skin.

You're not alone in this, and your feelings are valid!

Hugs again!

Cafewoman53

Tina you are doing better
Tina you are doing better than you think ! There is no way I would not be a total basket case waiting for my test results . I am on my fifth round of chemo and already thinking about how hard it will be to do nothing.
You are going through so much right now but you are doing the right thing with counselling I hope I will be able to recognize when I need to go, I'm sure my kids will be right there to tell me.
When I first started reading this board someone wrote about how worrying about a recurrence was a waste of time instead of enjoying the time between treatment and I remind myself about that alot and even though I give this cancer too much of my happy time I try to focus on the good parts of my life, mainly my children and grandchildren. You are one of my favorite posters here and I wish you all the best. Too bad we are all seperated ,we could all benefit by getting together and having a glass of wine. Thank-you for your support here and if I can help in any way let me know.
I am sending you positive thoughts to help you thru the week-end. Good luck on your test !
Colleen

joan60

Dear Tina
I will be sending positive thoughts your way, that everything comes out fine. I
have yet to have a follow up, coming in Nov.

Tina Brown

Sandy10 said:

Tina,
I am so sorry you are
Tina,

I am so sorry you are feeling bad. I completely understand your fears. I get anxious before my recheck as I am sure we all do. It's ok to feel this way. don't beat yourself up about it at all!! You have been through a war and the threat of it starting again always looms over our heads BUT you are a strong women!!!!!!! After all that you have been through you are still putting up a fight!! We all get down and frustrated with things. Who wouldn't after going through what we have been through. Please know that you are not alone!!! With every hurdle, you have all of us at your side!!! We are a force to be reconed with!!!

I am so happy you are here!! I am new to the board and when i read some of these posts, it always helps me to know that everyone of you are here on this board. It has been a blessing to me to see that i am not alone in this. You have no idea how many lives that you have touched just by posting and being someones friend. You have encouraged others and have offered advice to many women. There are MANY people that appreciate you!!! They may not always tell you, but believe me you are loved and appreciated.

I will be praying for you and for good news at your appointment. I hope you feel better. I know it is SO easier said than done, but try to not think about it. Do something fun and crazy over the weekend!!!! And remember that we are always with you!!!!

Sandy

Dear Sandy
Thank-you so much for your kind thoughts. I know it will never go away so we have to find a way of dealing with the anxiety otherwise we will go completely mad! I do many really good friends at home and on here. I do feel like I know you all and it is such a shame we can't meet up.

Much love Tina xx

Tina Brown

kikiz said:

Tina,
I understand how you
Tina,
I understand how you feel. When I was on Chemo, it felt proactive but without the Chemo, I feel like I am just in a holding pattern to find out where the sneaky cancer cells will strike next. It is like a horror movie where you know the monster is somewhere in the house but can't figure out what door to open to get out. As for the anziety, I have a pharmacy in my house and after talking to other cancer survivors, I have found that we would be a druggies delight.

Keeping you in my prayers and hope you have a great weekend.

Lori

Hi Lori
What a good analogy about the scary monster. You do kind of feel helpless not being on active treatment as you have no idea what the little buggers are up to. I have a medicine cabinet full of useful drugs but try to only take them when I have to.

Thank-you for caring Tina xx

Tina Brown

Lisa13Q said:

Dear Tina,
I am so glad you feel comfortable coming here and expressing how you feel. Anxiety and fear are TOTALLY normal prior to these meetings. If you didn't experience those feelings, I would think that isn't so normal. Cancer is a horrible disease on it's own when someone has a supportive family, but added on to your recent losses, I can't imagine how hard this is for you. Just remember we love you here, and this is a special place, even though it's on line, it's a kind of family. God loves you too...I don't know if you believe or not, but I think He's around. Your Mum is probably up there cheering you on as well....does shopping help when you're pre-occupied? I know buying stuff always helps me...perhaps it's time for a spree....Keep us posted...Lisa

Hello Lisa
To be perfectly honest with you I don't know if I believe in God or not? I do, however feel my mum is with me as I see signs and white feathers whenever I am sad. Shopping - you have no idea what good therapy it is, shopping is such a distraction for me that I tend to over spend but it makes me feel so much better!

Thank-you for your kind words, Tina xx

Tina Brown

leesag said:

Dear Tina,
What can I say, except, I'm there with you honey. (Well not physically, but spiritually and emotionally). I began seeing a therapist about a month and half ago because the anxiety of not doing anything was practically debilitating. And, having just had my three month check up, I'm pretty sure that nothing I say or even your GP says will have any long term effect on your fears. I, too,was very worried about ascites, it turns out its just fat. Who knew that one day I'd be relieved when the doctor told me that I was fat?

I'm on citalopram (daily) and ativan (for severe attacks). I also joined a 24 hour gym so I can walk away my stress anytime. I recently spent a few 11 p.m. hours there when my husband was in the hospital.

Hugs,

Leesa
PS: My oncologist told me several things that I have found to be true:

1) Not being on chemo is more stressful emotionally than actively treating the cancer with chemo. (A side note, I don't want to "treat" my cancer, I want to punish it, torture it, make it suffer the way it's made me suffer!)

2) Family and friends won't understand continued fears of recurrence. They will see you with hair and with energy doing all of the things you used to do, and use words like "HAD cancer" or "Cured" or "Remission" (Another side note, isn't it interesting that we say we are NED and not in remission?)

3) She told me to call her anytime the anxiety became overwhelming and she would set up blood work, reschedule appointments or even send me for a scan. Whatever I needed to feel comfortable in my skin.

You're not alone in this, and your feelings are valid!

Hugs again!

Hi Leesa
Your message made me smile so much because I am actually hoping I am fat - it does feel kind of squiggy first thing in the morning after I have been sleeping and not been thinking "Have I got ascites" so yes - this one time in my life I hope I am just fat. I guess the oncolgy unit is the only one in a hospital where the doctors NEVER tell their patients to lose weight!!!!!

Your tips are very helpful - thank-you. And for number 3 I did that and they pulled my appointment forward a week. (But my un-reasonable part of my brain then thinks "did they do that because the cancer is back and they need to treat it quicker") The mind can be a very destructable force.

I have informed my work that my cancer can't be cured but can be controlled because as you say, they see you with hair, smiling, carrying on as normal and they have no idea that the beast will rear its ugly head sometime in the future. I don't want special treatment but just consideration that I do have anxiety about it coming back.

Thank you Leesa, Tina x

Tina Brown

Cafewoman53 said:

Tina you are doing better
Tina you are doing better than you think ! There is no way I would not be a total basket case waiting for my test results . I am on my fifth round of chemo and already thinking about how hard it will be to do nothing.
You are going through so much right now but you are doing the right thing with counselling I hope I will be able to recognize when I need to go, I'm sure my kids will be right there to tell me.
When I first started reading this board someone wrote about how worrying about a recurrence was a waste of time instead of enjoying the time between treatment and I remind myself about that alot and even though I give this cancer too much of my happy time I try to focus on the good parts of my life, mainly my children and grandchildren. You are one of my favorite posters here and I wish you all the best. Too bad we are all seperated ,we could all benefit by getting together and having a glass of wine. Thank-you for your support here and if I can help in any way let me know.
I am sending you positive thoughts to help you thru the week-end. Good luck on your test !
Colleen

Hi Coleen
Thank you for your message. My counselling is just beginning to work. It has taken 6 sessions as all I did was talk and talk and my counsellor listened. I like her very much and as I feel relaxed with her things are beginning to make sense. Counselling is such a valuable thing but it does take a long time to feel any benefits.

I too remember that post about wasting your remission worrying about a recurance - it is so true and think about that often. That is why I and all of us NEED TO FIND A WAY to deal with the thought of a possible recurance without it taking over our lives. If I find one I will be the first person on here telling you all about it!!!

I have 2 great kids who give me all the love I need and yes wouldn't it be great if we could all meet up somewhere. I'd be happy to travel to the US for a meeting if anyone ever tried to organise it.

Much love Tina xx

Tina Brown

joan60 said:

Dear Tina
I will be sending positive thoughts your way, that everything comes out fine. I
have yet to have a follow up, coming in Nov.

Dear Joan
Thank-you.I will post on here tomorrow with the results. I wish you luck in November too.
Tina xx

clamryn

Rant & Rave all you want
Hi Tina,
Anxiety... don't you hate it. I try my best to show the world that I am making it. I try to put on a front for my children so that they see that I am trying to beat it. Sometimes I think I should have been an actress because I think I have become pretty good at convincing people that I am doing okay. But, you know, deep down I don't know what I am doing sometimes. I don't know how I am going to be able to do the next scene. I wonder if I am going to pull it off and no one will know.

Tina we just have to keep on plugging. I will be thinking about you when you go to the doctor. I will be praying for you. Waiting to get those results to me is the hardest part. When my friends and family know I am going to the doctor, they all start asking, "how did it go". They want to know what the numbers are. It scares me to think I have to tell them bad news...i.e., well they are going up again.

On Tuesday I will have my office visit. I will be getting my numbers from my blood work. I could have gotten them last week but I never call in to get them. People don't understand why I wait. I guess it is because I don't want to hear it over the phone. So I always wait until my doctor visit to hear the news.

I am so glad that I have found this board. I feel I can say to all of you how I am feeling. I have read your posts and you have been such an inspiration to me. Thank you Tina. Good Luck on Monday.

Linda

Tina Brown

clamryn said:

Rant & Rave all you want
Hi Tina,
Anxiety... don't you hate it. I try my best to show the world that I am making it. I try to put on a front for my children so that they see that I am trying to beat it. Sometimes I think I should have been an actress because I think I have become pretty good at convincing people that I am doing okay. But, you know, deep down I don't know what I am doing sometimes. I don't know how I am going to be able to do the next scene. I wonder if I am going to pull it off and no one will know.

Tina we just have to keep on plugging. I will be thinking about you when you go to the doctor. I will be praying for you. Waiting to get those results to me is the hardest part. When my friends and family know I am going to the doctor, they all start asking, "how did it go". They want to know what the numbers are. It scares me to think I have to tell them bad news...i.e., well they are going up again.

On Tuesday I will have my office visit. I will be getting my numbers from my blood work. I could have gotten them last week but I never call in to get them. People don't understand why I wait. I guess it is because I don't want to hear it over the phone. So I always wait until my doctor visit to hear the news.

I am so glad that I have found this board. I feel I can say to all of you how I am feeling. I have read your posts and you have been such an inspiration to me. Thank you Tina. Good Luck on Monday.

Linda

Hi Linda
I know just what you mean about getting your results. I could've gotton my CT scan results weeks ago but I have waited so it can be told to me alongside the CA125 and then the oncologist can make a decsion about "what to do next"

It is so good to have this board to post to because you just know that everyone on here know exactly what you are going through. I hope things go well for you Tuesday - post on here so we all know how you are.

Much love Tina xx

leesag

Tina Brown said:

Hi Linda
I know just what you mean about getting your results. I could've gotton my CT scan results weeks ago but I have waited so it can be told to me alongside the CA125 and then the oncologist can make a decsion about "what to do next"

It is so good to have this board to post to because you just know that everyone on here know exactly what you are going through. I hope things go well for you Tuesday - post on here so we all know how you are.

Much love Tina xx

I schedule my blood work and scans only one or two days before my onc visit. That way my onc has them together and I don't have too much waiting to do.


Thank goodness I have understanding docs and a hospital close by!

Mwee

Tina Brown said:

Hi Coleen
Thank you for your message. My counselling is just beginning to work. It has taken 6 sessions as all I did was talk and talk and my counsellor listened. I like her very much and as I feel relaxed with her things are beginning to make sense. Counselling is such a valuable thing but it does take a long time to feel any benefits.

I too remember that post about wasting your remission worrying about a recurance - it is so true and think about that often. That is why I and all of us NEED TO FIND A WAY to deal with the thought of a possible recurance without it taking over our lives. If I find one I will be the first person on here telling you all about it!!!

I have 2 great kids who give me all the love I need and yes wouldn't it be great if we could all meet up somewhere. I'd be happy to travel to the US for a meeting if anyone ever tried to organise it.

Much love Tina xx

Hi Tina
Thanks so much for bringing up this discussion about remission anxiety. I guess you have to go through it to realize that you're almost more alone while in NED than you even are while going through chemo. I had 3 1/2 years doing that dance before my CA-125s started to creep up. I can tell you that there were many days that I did not even think of cancer, but for most of the time and especially when I had an oncologist appt., those persistant thoughts would take over. You're right that we each need to find ways to work through the anxiety and not let it ruin the good times. Being able to share our feelings here goes a long way to making me feel better!
(((HUGS))) Maria

kikz

leesag said:

I schedule my blood work and scans only one or two days before my onc visit. That way my onc has them together and I don't have too much waiting to do.


Thank goodness I have understanding docs and a hospital close by!

Hi Tina
I have just started the trip you are on. I had my last chemo on 9/16/10. I did not get the last infusion because I was getting so sick each time, my doctor made the decision to end the chemo. I was happy but I asked if she was sure because I want to get the best results possible. Now the waiting game. I try to focus on how good I feel but I am also scared that the cancer is free to grow now without chemo. I have an appt with my oncologist on 11/03 and the oncologist surgeon on 11/04. I guess I will find out what the next step is. I had bloodwork last week to check on my electrolytes. I get the results on line except the CA 125. I am then mailed a hard copy which does include the CA 125. I remembered that when I started to open the envelope. I felt very frightened but happily it had not changed. I have to go for more bloodwork tomorrow because a couple of my counts are still low, so I will have to face opening another envelope in a few days.

I am also thinking of making an appt with the shrink I spoke to a couple of years ago. I feel okay but I want to discuss with her the feelings of waiting for the other shoe to drop. I agree with you that now everyone acts like I am totally cured. I know that is their coping mechanism but I am always compelled to remind them it is likely to come back. I feel like such a wet blanket when I do that but I like to live with truth.

I am sorry that I cannot offer you any real advice except to try and live in the moment which is all we can do. I to worry about every ache or pain. I was coughing a little one day and told my cousin, you know what I am thinking. She said don't do that. Yeah, okay.

Love, Karen

Mum2bellaandwilliam

kikz said:

Hi Tina
I have just started the trip you are on. I had my last chemo on 9/16/10. I did not get the last infusion because I was getting so sick each time, my doctor made the decision to end the chemo. I was happy but I asked if she was sure because I want to get the best results possible. Now the waiting game. I try to focus on how good I feel but I am also scared that the cancer is free to grow now without chemo. I have an appt with my oncologist on 11/03 and the oncologist surgeon on 11/04. I guess I will find out what the next step is. I had bloodwork last week to check on my electrolytes. I get the results on line except the CA 125. I am then mailed a hard copy which does include the CA 125. I remembered that when I started to open the envelope. I felt very frightened but happily it had not changed. I have to go for more bloodwork tomorrow because a couple of my counts are still low, so I will have to face opening another envelope in a few days.

I am also thinking of making an appt with the shrink I spoke to a couple of years ago. I feel okay but I want to discuss with her the feelings of waiting for the other shoe to drop. I agree with you that now everyone acts like I am totally cured. I know that is their coping mechanism but I am always compelled to remind them it is likely to come back. I feel like such a wet blanket when I do that but I like to live with truth.

I am sorry that I cannot offer you any real advice except to try and live in the moment which is all we can do. I to worry about every ache or pain. I was coughing a little one day and told my cousin, you know what I am thinking. She said don't do that. Yeah, okay.

Love, Karen

Hi Tina,
I have read that it
Hi Tina,

I have read that it is very normal to feel lost once treatment stops, I hope your results are good. Ifit was ascites surely your tummy would be hard all the time? Mum has only got 2 more chemotherapys to go now so it was interesting to read yours and the other ladies thoughts on here.I am dreading her stopping treatment, and have been looking for trial on maintenance chemo but I can't find anything which she is the right criteria for.it is a double edged sword isn't it , in one respect I can't wait for this to over so she doesn't have to have the treatment, and the other part of me feels like we will be sitting there doing nothing waiting for the b*****d to make an appearance.I know it will never fully go and will always hang over our heads
Keep your chin up , you are a strong lady.
Let us know your numbers, thinking of you xxxxx

Unknown

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