opinions wanted about workshopand recommendation

violinist1

Hello friends,
I heartily recommend the series of podcasts provided by CancercareConnect, all about survivorship. They are really well done, current, and the doctors who speak are great. They had a podcast very recently called, "Update on Lymphoma 2011", and they have a whole survivorship series.
I stumbled upon a website called National Coalition for Cancer Survivors, and I found something at once very puzzling to me. Listed among their offerings are free cds called," Living With Multiple Myeloma, Living with Leukemia , andLiving With Non HodgkinsLymphoma. No othe cancers are listed under the heading" living with" now why is that?

I have mentioned on here to you who have been altogether very kind to me that i am frightened of recurrence, only 5 weeks post radiation, and that my prognosis is for smooth sailing ahead. I am aware that any person with a cancer diagnosis will haveto live with uncertainty for the remainder of their life and that is a big topic. However, please talk to meabout this topic of uncertainty. Are cancers of theblood more uncertain than others? Why would they only offer cds about blood cancers? No breast cancer, no pancreaticcancer,, no other onescaled "living with".
Do i need a head transpkant? I thought that i was handling the stress of after treatmemt transition to whate er life is like now pretty well. I am in really good shape, i do exactly what i am told medically, i vent, andi face stressors head on, and then try release them. I am no saint. Sometimes i fail and then i just cry out of sheer terror. I have progressed and evolved mentally tp the point thati believe that if i recur, i will take thetreatment very gratefully. I am unashamadly afraid of suffering, and of the possibility that my life would changeto incorporate a relapse in the future. As it is impossible to live with that level of znxiety, i just keep" giving up on trying to figure out cancer" wheneverit seizes me.
I am a very strong person, i truly feel compssion for people who have sufferedy morethan i have, yet i still find myself returning to this ridiculous web of insecurity more often than is good for me. We believe in facing the problem in the moment, getting it out, and then teying to get on, either with behavior modification , jokes, anything fun, etc. I don't sit aroundcrying andsating poor me.
However, i was a person in a regular old life with regular problems, with much to be happy about, and i still have that life. But, nowi have the monster right there waiting to remind me every time i turn around,"hold on you idiot,you had cancer and you might
That seems like a perspective that is both real and totally unacceptable and unwelcome all at once. I eant to go back to myold lifeso badly.

violinist1

typos
Sorry for all the typos.I'm on a nook

bluerose

And she/he yelled ' I WANT MY LIFE BACK !!!!!!!!!!!!!'
Whoa this post is going to take a bit of typing I can see. lol. So many questions and so many common feelings yet they all seem as if you are the only one, right? Wrong. To me that was a consolation in itself, a great one, I am not going crazy others are feeling the same way. I don't know why it helps to know others are going through the same thing, I guess it's just knowing we aren't going way off track.

I think if you could go up to any cancer survivor's door and listen in for a few years that would pass in a flash, magic kind of stuff, lol, at some point you would here them all yelling out loud 'I WANT MY LIFE BACK'. I did. I was about 2 months into treatment, felt like total cwap and was attempting to do the laundry in the basement yet - hadn't learned to take help when it was offered yet. I remember the stairs that were once done two at a time by yours truly were difficult to scale one at a time and I had to stop several times with my laundry basket, on the stairs, to take rests. About the 3rd rest up was when I screamed our war cry 'I WANT MY LIFE BACK'. I looked around to see if anyone heard which was stupid as everyone had gone out for the day. It truly is a common occurance and it is because let's face it CANCER IS A HECK OF A SHOCK. All of a sudden we are thrust into another person's life it seems, with another person's body - full of aches and pains and we are all of a sudden unable to do much of what we did before - with ease anyways. It's a common cry. You are still sane.

One thing that really popped out at me as I read your posts was this 'I WANT GUARANTEES' and I hate to tell you this but there are none. There can be prognosasis (congrats on yours by the way) and there are guesstimates and there are hopes and there are dreams and wishes but no guarantees - FOR ANYONE - regardless of cancer or not. I liked to call my life before the diagnosis - the time of ignorant bliss as opposed to after when reality hit like a bat upside my head with the diagnosis. Before the diagnosis I still had the same chance of getting some other fatal illness or getting hit by a bus or whatever but no one thinks about their own mortality until something happens to threaten us. Then life is a whole new ball game. Some choose to take this 'lesson' and improve on their outlook or situation and others can't get over what has happened and might need some help, and still others go back and forth between what has happened and getting on with their lives and sometimes falling back. Pretty normal stuff. If however time has passed, different for everyone, and your feelings are interferring with your life and relationship with others then regardless of which group you are in it is always wise to look for help to move you along. I have done that now and then. It does help.

I don't know why the site you mentioned only has 'living with' sections for blood cancers, maybe the people who are writing the site's contributors are only able to speak to blood cancers so far. I don't know how new the site is but maybe they are working on it and may include other sections in the past. I have in fact been cured of my NHL and don't 'live with it' but I know some who do - continuing to recur. In fact many cancers from what I have seen and heard about if not curable become a sort of a 'chronic disease' - treated when it flares up again but it's never truly gone, but that's not just blood cancers. You might want to write the site and ask them that question. They would know better than I. Mine is just a guess.

One thing I have done because I have so many health issues was I compartmentalize some of my issues that I can not control. That means I sort of put an issue in a box and figuratively I put it in a mental box on a shelf in my mind and store it there til I am more easily able to handle it as I have to priorize what I give my attention to at any given time. That works if you monitor the number of boxes of issues you keep compartmentalizing, but it is a coping mechanism. Put things on the back burner sometimes so to speak. The good thing about that is that sometimes instead of worrying about any one thing even like recurrance too long is you can compartmentalize it and replace the time spent on that with doing something that is fun and pleasant. What that does is then gives you more energy to handle recurrance issues when they arise perhaps a little better. It's just what I do and again you have to make sure you don't just compartmentalize so much that your boxes start falling in on you and you wind up with too much in your face at once. These things have to be dealt with in good time but it's a temporary relief, if you can do it.

I found it interesting that you didn't finish typing that sentence "But, nowi have the monster right there waiting to remind me' every time i turn around,"hold on you idiot,you had cancer and you might " Now maybe it was just a typo but kind of a Freudian one, as if you can't even type it - what? have it again? Well like I asid before there are no guarantees for anything in life, isn't that true? You are just more aware of your own mortality and that's the difference. Back to that sentence again about the monster reminding you of the possibitly. Could you not say back 'hold on YOU idiot, yes I had cancer and I might NOT again either.' I meant you are talking to the monster being the idiot not you. lol. Know what I mean?

Of course people worry to various degrees to it coming back, no fun the first time and not eager to see it again, that's for sure but that's normal. However if you feel it is occupying too much of your time, you aren't able to shift focus to something more pleasant or just simply put it away for a bit then you might try to find a good grief therapist to help you handle the loss of your health - even if it's only for a little while as you may well come back strong once again. I myself am partial to psychologists who specialize in grief counselling and you might find one that deals with cancer survivors as well. Don't just pick them from the yellow pages though, talk with your doctor or other cancer survivors/patients you may know and see who they would recommend. I know you will be glad you did. I still check in with mine now and then to make sure I am still firing on all pistons. lol.

In conclusion cause my wrists are starting to go numb here, lol, I want to warn you about searching the internet and reading in anything that might be said on this or that subject. Just read with an open mind and if you have any issues with sites do bring them here and we can discuss it as you have done contact the site itself and ask them for answers. They should be able to do that for you.

I wish I could give you guarantees but unfortunately that's not possible. All I know is that it is very much a day at a time thing sometimes and after all isn't that supposed to be the right way to live anywho? One day at a time no matter what our situation. Have a goal and look to the future but one step in front of the other for us all.

All the best.

Hugs,
Bluerose

violinist1

bluerose said:

And she/he yelled ' I WANT MY LIFE BACK !!!!!!!!!!!!!'
Whoa this post is going to take a bit of typing I can see. lol. So many questions and so many common feelings yet they all seem as if you are the only one, right? Wrong. To me that was a consolation in itself, a great one, I am not going crazy others are feeling the same way. I don't know why it helps to know others are going through the same thing, I guess it's just knowing we aren't going way off track.

I think if you could go up to any cancer survivor's door and listen in for a few years that would pass in a flash, magic kind of stuff, lol, at some point you would here them all yelling out loud 'I WANT MY LIFE BACK'. I did. I was about 2 months into treatment, felt like total cwap and was attempting to do the laundry in the basement yet - hadn't learned to take help when it was offered yet. I remember the stairs that were once done two at a time by yours truly were difficult to scale one at a time and I had to stop several times with my laundry basket, on the stairs, to take rests. About the 3rd rest up was when I screamed our war cry 'I WANT MY LIFE BACK'. I looked around to see if anyone heard which was stupid as everyone had gone out for the day. It truly is a common occurance and it is because let's face it CANCER IS A HECK OF A SHOCK. All of a sudden we are thrust into another person's life it seems, with another person's body - full of aches and pains and we are all of a sudden unable to do much of what we did before - with ease anyways. It's a common cry. You are still sane.

One thing that really popped out at me as I read your posts was this 'I WANT GUARANTEES' and I hate to tell you this but there are none. There can be prognosasis (congrats on yours by the way) and there are guesstimates and there are hopes and there are dreams and wishes but no guarantees - FOR ANYONE - regardless of cancer or not. I liked to call my life before the diagnosis - the time of ignorant bliss as opposed to after when reality hit like a bat upside my head with the diagnosis. Before the diagnosis I still had the same chance of getting some other fatal illness or getting hit by a bus or whatever but no one thinks about their own mortality until something happens to threaten us. Then life is a whole new ball game. Some choose to take this 'lesson' and improve on their outlook or situation and others can't get over what has happened and might need some help, and still others go back and forth between what has happened and getting on with their lives and sometimes falling back. Pretty normal stuff. If however time has passed, different for everyone, and your feelings are interferring with your life and relationship with others then regardless of which group you are in it is always wise to look for help to move you along. I have done that now and then. It does help.

I don't know why the site you mentioned only has 'living with' sections for blood cancers, maybe the people who are writing the site's contributors are only able to speak to blood cancers so far. I don't know how new the site is but maybe they are working on it and may include other sections in the past. I have in fact been cured of my NHL and don't 'live with it' but I know some who do - continuing to recur. In fact many cancers from what I have seen and heard about if not curable become a sort of a 'chronic disease' - treated when it flares up again but it's never truly gone, but that's not just blood cancers. You might want to write the site and ask them that question. They would know better than I. Mine is just a guess.

One thing I have done because I have so many health issues was I compartmentalize some of my issues that I can not control. That means I sort of put an issue in a box and figuratively I put it in a mental box on a shelf in my mind and store it there til I am more easily able to handle it as I have to priorize what I give my attention to at any given time. That works if you monitor the number of boxes of issues you keep compartmentalizing, but it is a coping mechanism. Put things on the back burner sometimes so to speak. The good thing about that is that sometimes instead of worrying about any one thing even like recurrance too long is you can compartmentalize it and replace the time spent on that with doing something that is fun and pleasant. What that does is then gives you more energy to handle recurrance issues when they arise perhaps a little better. It's just what I do and again you have to make sure you don't just compartmentalize so much that your boxes start falling in on you and you wind up with too much in your face at once. These things have to be dealt with in good time but it's a temporary relief, if you can do it.

I found it interesting that you didn't finish typing that sentence "But, nowi have the monster right there waiting to remind me' every time i turn around,"hold on you idiot,you had cancer and you might " Now maybe it was just a typo but kind of a Freudian one, as if you can't even type it - what? have it again? Well like I asid before there are no guarantees for anything in life, isn't that true? You are just more aware of your own mortality and that's the difference. Back to that sentence again about the monster reminding you of the possibitly. Could you not say back 'hold on YOU idiot, yes I had cancer and I might NOT again either.' I meant you are talking to the monster being the idiot not you. lol. Know what I mean?

Of course people worry to various degrees to it coming back, no fun the first time and not eager to see it again, that's for sure but that's normal. However if you feel it is occupying too much of your time, you aren't able to shift focus to something more pleasant or just simply put it away for a bit then you might try to find a good grief therapist to help you handle the loss of your health - even if it's only for a little while as you may well come back strong once again. I myself am partial to psychologists who specialize in grief counselling and you might find one that deals with cancer survivors as well. Don't just pick them from the yellow pages though, talk with your doctor or other cancer survivors/patients you may know and see who they would recommend. I know you will be glad you did. I still check in with mine now and then to make sure I am still firing on all pistons. lol.

In conclusion cause my wrists are starting to go numb here, lol, I want to warn you about searching the internet and reading in anything that might be said on this or that subject. Just read with an open mind and if you have any issues with sites do bring them here and we can discuss it as you have done contact the site itself and ask them for answers. They should be able to do that for you.

I wish I could give you guarantees but unfortunately that's not possible. All I know is that it is very much a day at a time thing sometimes and after all isn't that supposed to be the right way to live anywho? One day at a time no matter what our situation. Have a goal and look to the future but one step in front of the other for us all.

All the best.

Hugs,
Bluerose

Thank you so much
I have to
Thank you so much
I have to think

gpespinosa

bluerose said:

And she/he yelled ' I WANT MY LIFE BACK !!!!!!!!!!!!!'
Whoa this post is going to take a bit of typing I can see. lol. So many questions and so many common feelings yet they all seem as if you are the only one, right? Wrong. To me that was a consolation in itself, a great one, I am not going crazy others are feeling the same way. I don't know why it helps to know others are going through the same thing, I guess it's just knowing we aren't going way off track.

I think if you could go up to any cancer survivor's door and listen in for a few years that would pass in a flash, magic kind of stuff, lol, at some point you would here them all yelling out loud 'I WANT MY LIFE BACK'. I did. I was about 2 months into treatment, felt like total cwap and was attempting to do the laundry in the basement yet - hadn't learned to take help when it was offered yet. I remember the stairs that were once done two at a time by yours truly were difficult to scale one at a time and I had to stop several times with my laundry basket, on the stairs, to take rests. About the 3rd rest up was when I screamed our war cry 'I WANT MY LIFE BACK'. I looked around to see if anyone heard which was stupid as everyone had gone out for the day. It truly is a common occurance and it is because let's face it CANCER IS A HECK OF A SHOCK. All of a sudden we are thrust into another person's life it seems, with another person's body - full of aches and pains and we are all of a sudden unable to do much of what we did before - with ease anyways. It's a common cry. You are still sane.

One thing that really popped out at me as I read your posts was this 'I WANT GUARANTEES' and I hate to tell you this but there are none. There can be prognosasis (congrats on yours by the way) and there are guesstimates and there are hopes and there are dreams and wishes but no guarantees - FOR ANYONE - regardless of cancer or not. I liked to call my life before the diagnosis - the time of ignorant bliss as opposed to after when reality hit like a bat upside my head with the diagnosis. Before the diagnosis I still had the same chance of getting some other fatal illness or getting hit by a bus or whatever but no one thinks about their own mortality until something happens to threaten us. Then life is a whole new ball game. Some choose to take this 'lesson' and improve on their outlook or situation and others can't get over what has happened and might need some help, and still others go back and forth between what has happened and getting on with their lives and sometimes falling back. Pretty normal stuff. If however time has passed, different for everyone, and your feelings are interferring with your life and relationship with others then regardless of which group you are in it is always wise to look for help to move you along. I have done that now and then. It does help.

I don't know why the site you mentioned only has 'living with' sections for blood cancers, maybe the people who are writing the site's contributors are only able to speak to blood cancers so far. I don't know how new the site is but maybe they are working on it and may include other sections in the past. I have in fact been cured of my NHL and don't 'live with it' but I know some who do - continuing to recur. In fact many cancers from what I have seen and heard about if not curable become a sort of a 'chronic disease' - treated when it flares up again but it's never truly gone, but that's not just blood cancers. You might want to write the site and ask them that question. They would know better than I. Mine is just a guess.

One thing I have done because I have so many health issues was I compartmentalize some of my issues that I can not control. That means I sort of put an issue in a box and figuratively I put it in a mental box on a shelf in my mind and store it there til I am more easily able to handle it as I have to priorize what I give my attention to at any given time. That works if you monitor the number of boxes of issues you keep compartmentalizing, but it is a coping mechanism. Put things on the back burner sometimes so to speak. The good thing about that is that sometimes instead of worrying about any one thing even like recurrance too long is you can compartmentalize it and replace the time spent on that with doing something that is fun and pleasant. What that does is then gives you more energy to handle recurrance issues when they arise perhaps a little better. It's just what I do and again you have to make sure you don't just compartmentalize so much that your boxes start falling in on you and you wind up with too much in your face at once. These things have to be dealt with in good time but it's a temporary relief, if you can do it.

I found it interesting that you didn't finish typing that sentence "But, nowi have the monster right there waiting to remind me' every time i turn around,"hold on you idiot,you had cancer and you might " Now maybe it was just a typo but kind of a Freudian one, as if you can't even type it - what? have it again? Well like I asid before there are no guarantees for anything in life, isn't that true? You are just more aware of your own mortality and that's the difference. Back to that sentence again about the monster reminding you of the possibitly. Could you not say back 'hold on YOU idiot, yes I had cancer and I might NOT again either.' I meant you are talking to the monster being the idiot not you. lol. Know what I mean?

Of course people worry to various degrees to it coming back, no fun the first time and not eager to see it again, that's for sure but that's normal. However if you feel it is occupying too much of your time, you aren't able to shift focus to something more pleasant or just simply put it away for a bit then you might try to find a good grief therapist to help you handle the loss of your health - even if it's only for a little while as you may well come back strong once again. I myself am partial to psychologists who specialize in grief counselling and you might find one that deals with cancer survivors as well. Don't just pick them from the yellow pages though, talk with your doctor or other cancer survivors/patients you may know and see who they would recommend. I know you will be glad you did. I still check in with mine now and then to make sure I am still firing on all pistons. lol.

In conclusion cause my wrists are starting to go numb here, lol, I want to warn you about searching the internet and reading in anything that might be said on this or that subject. Just read with an open mind and if you have any issues with sites do bring them here and we can discuss it as you have done contact the site itself and ask them for answers. They should be able to do that for you.

I wish I could give you guarantees but unfortunately that's not possible. All I know is that it is very much a day at a time thing sometimes and after all isn't that supposed to be the right way to live anywho? One day at a time no matter what our situation. Have a goal and look to the future but one step in front of the other for us all.

All the best.

Hugs,
Bluerose

You read my mind
I am fairly new to this site and am so thankful I found it. It really helps ground me to realize that I am not alone in my thoughts and feelings, it seems to be common and normal to worry and question. I was diagnosed with diffused large b cell NHL last sept, and my doctor has advised that I have a higher chance of relapsing within the first 2 years. Am I suppose to take that as good news or bad news??? Some days I think about it and are like yay, Ive made it 5 months into remission without any sign of a relapse. Other days its like ok, Ive worried for 5 months, just another year and a half of being paranoid and worried to go. Bluerose, you couldnt have said it any more clear or honest way when you say there are no guarantees. As much as I would love to know FOR SURE if I will relapse today, tomorrow or ever again, I just have to accept the fact that I will never know. Just be thankful for every day and moment that I am given to enjoy the things and ones I love and put on the boxing gloves if the "monster" ever comes back. I agree that therapist do help, I have no shame in admiting that I see one and are on anti-depression and anxiety meds. It was actually my therapist that helped me realizing that i am going through a grieving process, I had never looked at it that way. I quicky passed the denial stage, I suprising accepted the reality of "I have cancer", but seem to be lingering in the angry and guilty phases. I am not angry at the fact that Ive had to deal with cancer, I feel angry and guilty that my loved ones have to go through this with me. As thankful and blessed as I feel that I have an amazing support group, I dont think its fair for them, especially my son. Luckily he is very young, he will be 2 next month, but many times I feel like I am not a good mom because I am not able to play with him, or give him 120% of myself as I would like to. I cant even count how many times I have asked for my life back, or to just feel normal. As much as I love this picture of my family that I posted, it can be bitter sweet depending on my mood. Its actually my wedding photo lol. It was taking the day before my surgery, before I new of the monster. I went in for surgery thinking I would have the mass in my lung removed and walk out the next day feeling better and enjoy the rest of my life with my happy little family. Obviously things didnt go as planned. I woke up 3 days after my surgery in ICU to my new hubby, with a look of fear and disappointment on his face. He did not tell me right away, but from that look and the constant visit from other family and friends I knew something was terrible wrong. Our happy ending was turning into a horrible nightmare. Many many times I look at this picture and see our smiles and just wish I could hit pause and rewind to enjoy that time so much longer and never deal with the reality of the day after. But life goes on, and as I approach the year anniversary of that dreaded day, I have to be thankful that I am around to see that day. I cant dwell on the what ifs, worry myself sick, or just moop around and wait. I am a survivor and should not be afraid to live... I know this was a long post, but thank you for letting me vent lol. Although I do not know anyone personally, I feel a very strong connect with everyone. We are all on the same journey and I really do understand what each other is going through and feeling.

Gaby

Go_go_Gi_gi

gpespinosa said:

You read my mind
I am fairly new to this site and am so thankful I found it. It really helps ground me to realize that I am not alone in my thoughts and feelings, it seems to be common and normal to worry and question. I was diagnosed with diffused large b cell NHL last sept, and my doctor has advised that I have a higher chance of relapsing within the first 2 years. Am I suppose to take that as good news or bad news??? Some days I think about it and are like yay, Ive made it 5 months into remission without any sign of a relapse. Other days its like ok, Ive worried for 5 months, just another year and a half of being paranoid and worried to go. Bluerose, you couldnt have said it any more clear or honest way when you say there are no guarantees. As much as I would love to know FOR SURE if I will relapse today, tomorrow or ever again, I just have to accept the fact that I will never know. Just be thankful for every day and moment that I am given to enjoy the things and ones I love and put on the boxing gloves if the "monster" ever comes back. I agree that therapist do help, I have no shame in admiting that I see one and are on anti-depression and anxiety meds. It was actually my therapist that helped me realizing that i am going through a grieving process, I had never looked at it that way. I quicky passed the denial stage, I suprising accepted the reality of "I have cancer", but seem to be lingering in the angry and guilty phases. I am not angry at the fact that Ive had to deal with cancer, I feel angry and guilty that my loved ones have to go through this with me. As thankful and blessed as I feel that I have an amazing support group, I dont think its fair for them, especially my son. Luckily he is very young, he will be 2 next month, but many times I feel like I am not a good mom because I am not able to play with him, or give him 120% of myself as I would like to. I cant even count how many times I have asked for my life back, or to just feel normal. As much as I love this picture of my family that I posted, it can be bitter sweet depending on my mood. Its actually my wedding photo lol. It was taking the day before my surgery, before I new of the monster. I went in for surgery thinking I would have the mass in my lung removed and walk out the next day feeling better and enjoy the rest of my life with my happy little family. Obviously things didnt go as planned. I woke up 3 days after my surgery in ICU to my new hubby, with a look of fear and disappointment on his face. He did not tell me right away, but from that look and the constant visit from other family and friends I knew something was terrible wrong. Our happy ending was turning into a horrible nightmare. Many many times I look at this picture and see our smiles and just wish I could hit pause and rewind to enjoy that time so much longer and never deal with the reality of the day after. But life goes on, and as I approach the year anniversary of that dreaded day, I have to be thankful that I am around to see that day. I cant dwell on the what ifs, worry myself sick, or just moop around and wait. I am a survivor and should not be afraid to live... I know this was a long post, but thank you for letting me vent lol. Although I do not know anyone personally, I feel a very strong connect with everyone. We are all on the same journey and I really do understand what each other is going through and feeling.

Gaby

On target issues
I too am new to this disease process, treatment and all issues around it. 8/22/11; First round B-R treatment last week. Fortunately very few side effects thus far!!! PTL-- These posts are right on target for me---so many issues I've hardly had the time to be aware of and digest. Due to my mild symptoms, gastroenterologist thought diverticulitis---Ct Scan showed bulky, enlarged lymph nodes (5 cm) --PET showed numerous hot spots---abdomen, left scapula, breast bone, left skull, lymph node in chest near aorta, ---but I didn't feel sick-- I can't see or feel any enlarged nodes---
So my what ifs have to do with side effects from Chemo---fortunately Bendamustine/Rituxan has reputation of least toxic--with good results. I've been very blessed so far; only some fatigue the last couple of days. And that not so bad--

All of the ifs, ands and buts, discussed by Violinist, Bluerose and Gaby--hit a true note for me as well---in the natural--My faith is holding me up, and strong; however, my mind starts trying to throw in all kinds of doubts---It is not knowing---and trying to live-one day at a time; compartmentalizing is definitely helpful tool for me---thanks for the reminder Fran---

Praying for all on the site---new friends--Susan

bluerose

gpespinosa said:

You read my mind
I am fairly new to this site and am so thankful I found it. It really helps ground me to realize that I am not alone in my thoughts and feelings, it seems to be common and normal to worry and question. I was diagnosed with diffused large b cell NHL last sept, and my doctor has advised that I have a higher chance of relapsing within the first 2 years. Am I suppose to take that as good news or bad news??? Some days I think about it and are like yay, Ive made it 5 months into remission without any sign of a relapse. Other days its like ok, Ive worried for 5 months, just another year and a half of being paranoid and worried to go. Bluerose, you couldnt have said it any more clear or honest way when you say there are no guarantees. As much as I would love to know FOR SURE if I will relapse today, tomorrow or ever again, I just have to accept the fact that I will never know. Just be thankful for every day and moment that I am given to enjoy the things and ones I love and put on the boxing gloves if the "monster" ever comes back. I agree that therapist do help, I have no shame in admiting that I see one and are on anti-depression and anxiety meds. It was actually my therapist that helped me realizing that i am going through a grieving process, I had never looked at it that way. I quicky passed the denial stage, I suprising accepted the reality of "I have cancer", but seem to be lingering in the angry and guilty phases. I am not angry at the fact that Ive had to deal with cancer, I feel angry and guilty that my loved ones have to go through this with me. As thankful and blessed as I feel that I have an amazing support group, I dont think its fair for them, especially my son. Luckily he is very young, he will be 2 next month, but many times I feel like I am not a good mom because I am not able to play with him, or give him 120% of myself as I would like to. I cant even count how many times I have asked for my life back, or to just feel normal. As much as I love this picture of my family that I posted, it can be bitter sweet depending on my mood. Its actually my wedding photo lol. It was taking the day before my surgery, before I new of the monster. I went in for surgery thinking I would have the mass in my lung removed and walk out the next day feeling better and enjoy the rest of my life with my happy little family. Obviously things didnt go as planned. I woke up 3 days after my surgery in ICU to my new hubby, with a look of fear and disappointment on his face. He did not tell me right away, but from that look and the constant visit from other family and friends I knew something was terrible wrong. Our happy ending was turning into a horrible nightmare. Many many times I look at this picture and see our smiles and just wish I could hit pause and rewind to enjoy that time so much longer and never deal with the reality of the day after. But life goes on, and as I approach the year anniversary of that dreaded day, I have to be thankful that I am around to see that day. I cant dwell on the what ifs, worry myself sick, or just moop around and wait. I am a survivor and should not be afraid to live... I know this was a long post, but thank you for letting me vent lol. Although I do not know anyone personally, I feel a very strong connect with everyone. We are all on the same journey and I really do understand what each other is going through and feeling.

Gaby

Hi Gaby
I am glad you found this site too, as you have already found it can be very comforting to know that you can go to people who have been where you are and check into their experiences and post questions of your own. Only those who have walked in your shoes truly know what you are going through.

Let me first say that that picture of your family is just so heartwarming and reminds me of when I was diagnosed 25 years ago. My two children were that age too. I felt as you do, would I be there to see them grow up but guess what? Here I am 25 years later and those two small children are now in their early 20ties and one was just married and is almost finished university, the other on the way to his career. You can be that Mom too in a couple of decades, watching your kids through their stages of life. It's a whole new day in cancer treatments and even back 23 years ago when I had the transplant that transplant was done on the reoccurance of the first diagnosis and I still survived, that shows you it can be beaten. Doctors don't usually use the word 'cure' with cancer, especially after a recurrance, but they did for me several years ago. You can be another example to someone else in a couple of decades.

For me one of the most powerful things I did for myself was pray. I don't know if you are a spiritual person or not but I hope so. I know that I couldn't have gotten through without my faith. I know that when I was in the worst grips of the treatments I prayed like I had never prayed before to be allowed to remain here on this crazy planet for my children - so that I could be there for them when they were growing up and I was granted that wish. I believe that a Mother's prayers for her children are the most powerful prayers there are. Just something I have believed ever since. You are still that same smiling person in that photo of you and your family, you are.

I am so glad that you got a therapist, I think all cancer surivors should have one to go to. She was right on the money when she said you were going through the steps of grief/loss. I got caught in the anger phase too, that's pretty common. I mean heck 'it's not fair' at any stage of life so damn it I was mad too and I think most feel like that at some point. I found that anger came back several times and in some ways I still wrestle with it along the way but not nearly as often as in the beginning. Just keep tabs on it. Make sure you don't get caught in any of the stages too long, except for acceptance of course. I had to be put on anti-anxiety meds after diagnosis but was off them as soon as I could cope - it's alot at once and as you said no shame in asking for help when you need it.

Don't beat yourself up too much for going through all the emotions you discuss, like I said and your counsellor said, it's common. Truly though, the only difference between us and all those 'healthy' folks out there is that we have been given a label but that label can be ripped away after treatments are done. No one is saying that you can forget about it but you can go on in a healthy manner maybe sometimes with some help from a therapist or from a site like this. Those who are walking around 'healthy' just haven't been faced with their own mortality yet, that's the only difference. You are the same person you were before the diagnosis, it's hard to get your head around I know but it's true. Just not quite as innocent as before. Blissfull ignorance, sometimes I wish like you that I had that feeling just once more too. You will gain alot from this experience too though, mark my words, we all do.

You were talking about feeling bad that you couldn't play with your son the way you wanted to and that rang a bell with me so thought I would comment on that briefly here. I actually made a point of trying to do what I could with my kids during my treatment and I was pretty sick way back then, anti nausea drugs weren't what they are today I can tell you. Anyways I had to be creative and so since I was stuck on the couch and in bed alot when they were young I did alot of renting videos and having treats in bed with me so that I could take part. I got them to do their little crafts in my bedroom with me and even if I couldn't do much myself I was with them and talking to them as they worked. However, looking back now, I think I could have done more with them even though I was pretty sick alot of the time. I am divorced now and I think that my husband at the time thought he was helping me by taking my kids out to the park alot and that was fine sometimes but it took the kids away from me. Now sometimes I had to ask him too, that's for sure, but why I am mentioning this to you is that in order for you to stay connected with your child just remember to really try to think up things that you can be a part of with him even though it may just be in the same room. Just thought I would throw that in.

Anywho, I am glad you found this site and I hope all goes well and you get back to doing the things you love in quick time. As far as the doctor saying that recurrance can happen in the first 2 years that did happen to me but there are no guarantees anyone knows, not even the docs. Statistics have been proven wrong before. If it does come back, like you said you will fight it and my guess is that you will win. I sense a strong spirit in you and just look at that sweet little boy's face in the picture - there is your strength.

All the best, one step at a time, one day at a time.

Blessings,

Bluerose

bluerose

violinist1 said:

Thank you so much
I have to
Thank you so much
I have to think

It's alot to take in
I agree, you have to think, but just wanted to say that this might be a good time to get a counsellor - a good grief counsellor - to guide you through your thought process. They really do help alot. You are going through all the stages of grief/loss of your health and sometimes you can get stuck in one of the stages. As you can read here, Gaby also has a counsellor that has helped her as well and so have I.

A good psychologist/grief counsellor might be just what you need to help you through. Keep in touch.

Blessings,

Bluerose

violinist1

gpespinosa said:

You read my mind
I am fairly new to this site and am so thankful I found it. It really helps ground me to realize that I am not alone in my thoughts and feelings, it seems to be common and normal to worry and question. I was diagnosed with diffused large b cell NHL last sept, and my doctor has advised that I have a higher chance of relapsing within the first 2 years. Am I suppose to take that as good news or bad news??? Some days I think about it and are like yay, Ive made it 5 months into remission without any sign of a relapse. Other days its like ok, Ive worried for 5 months, just another year and a half of being paranoid and worried to go. Bluerose, you couldnt have said it any more clear or honest way when you say there are no guarantees. As much as I would love to know FOR SURE if I will relapse today, tomorrow or ever again, I just have to accept the fact that I will never know. Just be thankful for every day and moment that I am given to enjoy the things and ones I love and put on the boxing gloves if the "monster" ever comes back. I agree that therapist do help, I have no shame in admiting that I see one and are on anti-depression and anxiety meds. It was actually my therapist that helped me realizing that i am going through a grieving process, I had never looked at it that way. I quicky passed the denial stage, I suprising accepted the reality of "I have cancer", but seem to be lingering in the angry and guilty phases. I am not angry at the fact that Ive had to deal with cancer, I feel angry and guilty that my loved ones have to go through this with me. As thankful and blessed as I feel that I have an amazing support group, I dont think its fair for them, especially my son. Luckily he is very young, he will be 2 next month, but many times I feel like I am not a good mom because I am not able to play with him, or give him 120% of myself as I would like to. I cant even count how many times I have asked for my life back, or to just feel normal. As much as I love this picture of my family that I posted, it can be bitter sweet depending on my mood. Its actually my wedding photo lol. It was taking the day before my surgery, before I new of the monster. I went in for surgery thinking I would have the mass in my lung removed and walk out the next day feeling better and enjoy the rest of my life with my happy little family. Obviously things didnt go as planned. I woke up 3 days after my surgery in ICU to my new hubby, with a look of fear and disappointment on his face. He did not tell me right away, but from that look and the constant visit from other family and friends I knew something was terrible wrong. Our happy ending was turning into a horrible nightmare. Many many times I look at this picture and see our smiles and just wish I could hit pause and rewind to enjoy that time so much longer and never deal with the reality of the day after. But life goes on, and as I approach the year anniversary of that dreaded day, I have to be thankful that I am around to see that day. I cant dwell on the what ifs, worry myself sick, or just moop around and wait. I am a survivor and should not be afraid to live... I know this was a long post, but thank you for letting me vent lol. Although I do not know anyone personally, I feel a very strong connect with everyone. We are all on the same journey and I really do understand what each other is going through and feeling.

Gaby

Dear gaby,
My two boys are
Dear gaby,
My two boys are 23 and 21, and well on their way. Your description of how you feel about how this is impacting your baby is very touching. I think it puts a lot of strain on things, worrying about that, andi think it is natural to do it. However, the way you talk about him makes me sure that he is very well protected and taken care of and that you are still right tjre for him.
Yesterday, my younger son, who is away at college, innocently asked me how i am doing, and in that moment, the entire subject cam into sharp relief. Here i was, sitting in the car talking on the phone to my lovely boy, when he says that simple thing, and i know he means,"have you stopped throwing up up yet, can you get out of the bed yet, is the radiation sickness gone yet?"
I said," I'm so much better now." And it is true. It was strangely surreal that such a simple ques
tion felt like such a big thing. I sat there a long time thinking that it was so like him to ask me, but wishing that he had never learned about me and nhl. When we told him he loked like a dog being kicked. We were very careful to tell the teuth, but in very small amounts, staying mainly on the choices we made to go forward and our hopes for a ling life for me.
It seems to me that it is a mixed blessing situation with a baby. You can't tell him, and that is a horrible moment believe me, telling your child, but instead of telling him, you internaliize all of the events effecting his little lfe, all swirling around inside you. You are so fortunate to have found a counselor who is helping you.
I tried one here, but i didn't like her, even though she was ok. I am looking at others. Where i live, a really good psychiatrist , out of network could charge as much as $450 for 45 minutes. In network, you might get 15 minutes. I may end up with a psychologist. I am still looking.a good psychologist can be very wise, but that is my hesitation. I want someone who has been around the block with cancer survivors.
I had a major depression when my mother died 16 years ago of lung cancer metastasized to th brain, and i know myself enough to know whether ineed prozac, and right now i don't. I went to a psychiatrist then who was a known specialist in death and dying at Yale, and he really helped me, but he died!!, so i can't goto him.

I think that you and your lovely family will prevail and now i am putting you into my list of people to think good thoights about, and i am sending them to you.