Finding survivorship harder than treatment, am I alone?

summer2007

gagirl08 said:

I'm in the club too
I had stage 4 nonhodgkins (dlbcl) and have been in remission just over two years. I am a very positive person with a strong faith and sailed right through my treatment with no emotional problems. Afterwards was when I began to feel anxious about the future. I had moved three times in a year and without a support system in place it is questionable an STC would be done if I relapsed. I finally talked with a social work trained in counseling. She said this was perfectly normal and that helped some but what really changed me were other things that happened (two surgeries and a fourth move!). I then met a young man half my age with the same cancer...and he has just passed away. Why am I here instead of him?... Only God knows that.
I have begun to inderstand that nobody knows what the future holds, not even people without cancer. We all have to roll with the punches and realize that, even though bad things do happen to good people, there are still blessings in each day for us if we look for them. Life may be different than before and ,yes, there will be down days...but now I take it one day at a time and enjoy each day as much as possible. One huge help is to talk with others who have been through this and understand these feelings. So remember we are here to listen ,we understand, and most importantly, reach out to others. When you help others, your own problems seem to grow smaller. Take care friend.

Thanks...
This is my 1st time of writing here and I just wanted to say thanks to everyone for writing their thoughts and feelings on here. They have all helped my a lot in what I think has been one of the toughest weeks in my 'cancer journey'. I was diagnosed with large diffuse B cell lymphoma in March 2007 and like others here felt very positive throughout my treatment. I had 6 cycles of R-CHOP and 15 days of radiotherapy and never doubted for a minute that I wouln't beat it. I felt very in control of things, pro-active and focused on the end of the treatment and getting back to a 'normal life'. I finished treatment almost 2 years ago and aside from one or two bumps on the road, felt strong emotionally and physically. However over the last 2-3 weeks I have been having a lot of pain in my chest (site of the tumour) and whilst my rational mind can put it down to over-doing it and taking up yoga (all those vinsayas and opening of the chest!), my irrational mind is convinced the lymphoma has returned. I have seen the Dr and have scans scheduled, and whilst I am somewhat reassured by their lack of concern over the pain, I am left with the feeling of being a sitting duck - that even if the scans and tests come back clear this time, it is now not a matter of if the cancer will come back, but when. And I don't know how to live with that feeling...

...but reading that others have been through this has made me realise that it is normal and all a part of the healing process. So I wanted to say thanks for the honesty and the words which have been an enormous help. Also it has been humbling to read that there are so many strong people out there delaing with cancer and its effects in amazing ways.

Lastly I just wanted to say that what gagirl08 wrote about enjoying each day stikes a chord with me - this weekend I have seen an old friend, gone blueberry picking in the sunshine and finished the weekend with dinner and a beer with another friend. Gagirl08 is right, we don't know what the future holds but I do know that I have enjoyed the last 2 days of my life and, as importantly, was very conscious of enjoying them at the time....and that I am lucky to have had those days.

mcarva

gagirl08 said:

I'm in the club too
I had stage 4 nonhodgkins (dlbcl) and have been in remission just over two years. I am a very positive person with a strong faith and sailed right through my treatment with no emotional problems. Afterwards was when I began to feel anxious about the future. I had moved three times in a year and without a support system in place it is questionable an STC would be done if I relapsed. I finally talked with a social work trained in counseling. She said this was perfectly normal and that helped some but what really changed me were other things that happened (two surgeries and a fourth move!). I then met a young man half my age with the same cancer...and he has just passed away. Why am I here instead of him?... Only God knows that.
I have begun to inderstand that nobody knows what the future holds, not even people without cancer. We all have to roll with the punches and realize that, even though bad things do happen to good people, there are still blessings in each day for us if we look for them. Life may be different than before and ,yes, there will be down days...but now I take it one day at a time and enjoy each day as much as possible. One huge help is to talk with others who have been through this and understand these feelings. So remember we are here to listen ,we understand, and most importantly, reach out to others. When you help others, your own problems seem to grow smaller. Take care friend.

survivorship
I first want to say God Bless each and everyone of you on these boards. I feel like I have people who really understand and care. Gagirl08, you are so right. No-one knows what the future holds, even people with "perfect" health. I never thought I had perfect health and I suffered with needless anxiety and worry since I was 12 (I am now 50). What a waste of time! I have an appointment with an oncology psychiatrist this Friday and I hope she can put things into perspective for me. I think it may be harder for me because I have an existing anxiety condition and this just compounds it. I do realize that every minute I spend obsessing and worrying, I am missing out on the joys of that minute. And that minute will never come again. I have to re-wire my brain and keep focused and all of your suggestions have been so helpful. It's work, for sure, but I have set my goals on obtaining that sense of peace I felt when I was going through treatment. I know I don't need to be going through illness in order to obtain it, I just need to really search for it. Thank you and best of health to you.
Mary Ann

ckuhlman

I am with you, this is my
I am with you, this is my first post too and I feel the same way. When I was going through my second round of treatments it seemed as if everyone was there all the time. Now that I am only doing 3 month treatments, no one is there. My boyfriend of two years left me because he is scared, my life just seemed to fall apart bit by bit. I have no one to really talk to about anything because they all think now that I am in remission again I should be fine. I found myself drinking often just to avoid it all, but now I need to confront it and have no idea how. I was diagnosed the first time at 24 when my daughter just turned 1, the second time was a year ago. I never really told her anything because I figure if I don't know how to deal with it how am I going to help her. I feel like I have finally hit rock bottom and don't know where to turn now. I have treid church and met many wonderful people but no one going through what I am. Is there anyone out there that knows what to do now?

mcarva

ckuhlman said:

I am with you, this is my
I am with you, this is my first post too and I feel the same way. When I was going through my second round of treatments it seemed as if everyone was there all the time. Now that I am only doing 3 month treatments, no one is there. My boyfriend of two years left me because he is scared, my life just seemed to fall apart bit by bit. I have no one to really talk to about anything because they all think now that I am in remission again I should be fine. I found myself drinking often just to avoid it all, but now I need to confront it and have no idea how. I was diagnosed the first time at 24 when my daughter just turned 1, the second time was a year ago. I never really told her anything because I figure if I don't know how to deal with it how am I going to help her. I feel like I have finally hit rock bottom and don't know where to turn now. I have treid church and met many wonderful people but no one going through what I am. Is there anyone out there that knows what to do now?

we're here for you
Ckuhlman,

First of all I want to say that I am sorry for all the pain you are going through. Yes, it is very tough. You didn't mention what you were diagnosed with and what type of treatment you are currently undergoing. I'm sorry to hear about your boyfriend. It is sad that a lot of people really don't know how to deal with someone who has something as terrifying as cancer and rather than deal with it, they avoid it. I agree they are probably scared but it certainly does not help the person dealing with the disease to lose their partner because of this. I do want to say that coming on these boards is an excellent first step; there are so many caring people here who can identify with you and offer their support and suggestions. Have you ever considered seeing a therapist that has experience dealing with cancer patients? I have been seeing a therapist for a while now because of anxiety issues (not relating to the cancer) but I am also going to be seeing an oncology psychiatrist this Friday because I am also having a hard time coping. Another thought I have is does the facility where you are receiving treatment have any support groups or if not, they might be able to recommend one for you. The Lymphoma Support Network (LSN) has a one-to-one peer support program and they can match you with a buddy that has had an experience similar to yours (www.lymphoma.org). I have two buddies and they have been a great help. One is 10 years out and the other is 20 years out and they are a source of inspiration because they understand what I am going through. You can choose to email your buddy or even talk on the phone. You can select the different characteristics you would prefer your buddy to have. Hope this helps a bit. In any event, please keep posting and you will find you are definitely not alone. Take care.
Mary Ann

kimintx

mcarva said:

we're here for you
Ckuhlman,

First of all I want to say that I am sorry for all the pain you are going through. Yes, it is very tough. You didn't mention what you were diagnosed with and what type of treatment you are currently undergoing. I'm sorry to hear about your boyfriend. It is sad that a lot of people really don't know how to deal with someone who has something as terrifying as cancer and rather than deal with it, they avoid it. I agree they are probably scared but it certainly does not help the person dealing with the disease to lose their partner because of this. I do want to say that coming on these boards is an excellent first step; there are so many caring people here who can identify with you and offer their support and suggestions. Have you ever considered seeing a therapist that has experience dealing with cancer patients? I have been seeing a therapist for a while now because of anxiety issues (not relating to the cancer) but I am also going to be seeing an oncology psychiatrist this Friday because I am also having a hard time coping. Another thought I have is does the facility where you are receiving treatment have any support groups or if not, they might be able to recommend one for you. The Lymphoma Support Network (LSN) has a one-to-one peer support program and they can match you with a buddy that has had an experience similar to yours (www.lymphoma.org). I have two buddies and they have been a great help. One is 10 years out and the other is 20 years out and they are a source of inspiration because they understand what I am going through. You can choose to email your buddy or even talk on the phone. You can select the different characteristics you would prefer your buddy to have. Hope this helps a bit. In any event, please keep posting and you will find you are definitely not alone. Take care.
Mary Ann

Me Too
This is my first post also. I was diagnosid with stage 4 b-cell lymphoma last aug 2008. I had a rutaxin treatment today and I am now on the steroid high. I have gained about 35-40 pounds since the treatments and am not having days when i have trouble breathing and my legs and ankles are swelling. I am not one to complain so most of my family and friends have no idea what i am going through. I am also single and it is hard being alone.
I know there must be a plan for me!
Kim

kendupont

Surviving - So Confused
Hello all, I'm a 40 year old male. Just finished with 6 Months of ABVD, after stage 4 Hodkins (NS). Thought I was a goner, but so glad to be back for many reasons. Six year old son Cody is one of them. Yes, on the complications (don't talk to me about passing food) and so many other things...

Just want to know if anyone else just needs to talk to someone other than friends and family. (they just don't get it...)

Ken

WinneyPooh

Survivor 10 years
I had HL stage IV, I was dead at the hospital when both my lungs collapsed, It took several minutes for them to bring me back I was 33, my two kids and a husband were on vacation without me because i thought i had a bad cold and did not want to go. Fear is a big thing but your chances of a reoccuring HL are very slim. My advise to you is go veggitarian and stay as physically fit as possible, And don't worry.

Winney

judyy

WinneyPooh said:

Survivor 10 years
I had HL stage IV, I was dead at the hospital when both my lungs collapsed, It took several minutes for them to bring me back I was 33, my two kids and a husband were on vacation without me because i thought i had a bad cold and did not want to go. Fear is a big thing but your chances of a reoccuring HL are very slim. My advise to you is go veggitarian and stay as physically fit as possible, And don't worry.

Winney

surviing
Hi Everyone,
You all are so right. there is so much to this disease process it just takes it's toal! Chuhiman take mary Ann's advise and sign up for someone to call you. There is also a group called CanCare.That does the same except there's is only calls. But It is very helpful this woman calls me she had DLBCL 20 years ago. Very Nice understands all my terrible feelings. Ken that might be helpful to you too because we all need someone who understands. That why these boards are so good. but it is nice to hear a voice and know someone is listening.

I am alone to Kim and I hate it I can do alright in the day but the nights are so scarey for me and lonely. Sometimes I just want someone around that loves me and will rub my back lol My friend has ovarian cancer and she says husbands can drive you mad too. !! lol I am sure but ....... Oh well. I don't know where I was going with that . HA HA Chemo brain is alive and well here.
I just remembered I used to be a Stephen Minister. A lot of churches have this group now they will meet with you once a week and are very kind and helpful. If you want more information let me know.

Here is something that just made me laugh today. Maybe you will enjoy it I am not sure. but here goes

I was coming out of
Barnes and Nobel today and When I was driving down the lane I passed a car with the license plate

O RAT S when I saw it I thought of that scene in Indiana Jones where he said " O rats"
for some reason it cracked me up. I laughed all the way home and am laughing now.

It is brain damage I guess.

blessings
Judy

Racht

Sooo not alone
Hi Mary Ann,
i haven't logged onto this site in almost a year now but I couldn't help but respond to your post because I can so identify with how you feel. I finished with treatment in 2005 (chemo and rads) and have had "clean" scans since..but I also had a rough time adjusting to the whole "post treatment" concept/status too. I am just NOW feeling like I am out from the dark cloud - not so much fear of recurrence but the horrible brain fog, depression and anxiety that followed my year of physical hell. (like you, while it was underway I was upbeat, positive and very supported by friends and family. It hit me after..) But how I felt is very fresh in my mind and in my heart and I totally know what you mean. In some sense I never want to forget so that I can have empathy for people that are in that place now. Like you. Please, if ever you want to talk, you can email me directly. I have a website too if you'd like to check it out and also follow me on twitter. it is here: http://web.me.com/RMT0912.

love and peace
Rachel

ralphie322

survivorship is hard
i like the sitting duck line...cause i can relate to that..mine was cancer turned me from tank to a termite ......cancer sucks and we beat it thats great everyone tells ya,but you just have such a worry cause i do 7yrs now but it seems like yesterday when they dropped that bomb on me in the doctors office.JUST ONE DAY AT A TIME,thats what i do and pray it stays AWAY........try having a sense of humor about it that helps a lil bit..kinda like the smilin clown cryin on the inside...GOOD LUCK

Hestia

ralphie322 said:

survivorship is hard
i like the sitting duck line...cause i can relate to that..mine was cancer turned me from tank to a termite ......cancer sucks and we beat it thats great everyone tells ya,but you just have such a worry cause i do 7yrs now but it seems like yesterday when they dropped that bomb on me in the doctors office.JUST ONE DAY AT A TIME,thats what i do and pray it stays AWAY........try having a sense of humor about it that helps a lil bit..kinda like the smilin clown cryin on the inside...GOOD LUCK

Finding afte effects harder than treatment
I finished chemo and rad 4/22/09. (NHL) Have had 2 PET scans, showing I am still in remission. The problem seems to be aftereffects. Shortness of breath, I weeze, gasp for breath sometimes and am unable to take a deep breath. Not all the time, but when it hits it hits hard. Not sure what caused it but think probably rituaxin. Also joint pain, sometimes I just don't want to move, other times, sometimes for a whole day, I am able to move freely. Had an echocardigram (sp?) yesterday, get result today. Is heart damaged??? Is it lungs??? Onc says treatment wouldn't have an effect on lungs, so guess would be heart. He also told me that there are meds for shortness of breath condition. Hope so. Sometimes I ride cart at grocery store, sometimes I walk; never know till I get in the store if it is a day that I think I can make it round the store.

I hate this. I was so fighting strong during treatment, so up, talked to other chemo patients, talked to people at radiation site, but now I just want to hide. Don't want to talk to anyone, but for the sake of some mental health (depression is a whole other issue) I called AmCaSo to get number for support group in area. I was told there was only one and it was for any kind of cancer. I called and it is for breast cancer, but the leader invited to attend a mtg anyway. They meet tomorrow at a local restaurant so I am going to go. I figure aftereffects are aftereffects, no matter what kind of cancer. Who knows! I will call and check again on a support group. I do not live in an isolated area, there are at least 5 major hospitals within a 25 miles radius.

It does help to know that others are dealing with this (sorry, but at least I'm not crazy, or else we all are and that's ok too).
Hang in everybody and I will too,
jacky

hodgkoid2003

Hestia said:

Finding afte effects harder than treatment
I finished chemo and rad 4/22/09. (NHL) Have had 2 PET scans, showing I am still in remission. The problem seems to be aftereffects. Shortness of breath, I weeze, gasp for breath sometimes and am unable to take a deep breath. Not all the time, but when it hits it hits hard. Not sure what caused it but think probably rituaxin. Also joint pain, sometimes I just don't want to move, other times, sometimes for a whole day, I am able to move freely. Had an echocardigram (sp?) yesterday, get result today. Is heart damaged??? Is it lungs??? Onc says treatment wouldn't have an effect on lungs, so guess would be heart. He also told me that there are meds for shortness of breath condition. Hope so. Sometimes I ride cart at grocery store, sometimes I walk; never know till I get in the store if it is a day that I think I can make it round the store.

I hate this. I was so fighting strong during treatment, so up, talked to other chemo patients, talked to people at radiation site, but now I just want to hide. Don't want to talk to anyone, but for the sake of some mental health (depression is a whole other issue) I called AmCaSo to get number for support group in area. I was told there was only one and it was for any kind of cancer. I called and it is for breast cancer, but the leader invited to attend a mtg anyway. They meet tomorrow at a local restaurant so I am going to go. I figure aftereffects are aftereffects, no matter what kind of cancer. Who knows! I will call and check again on a support group. I do not live in an isolated area, there are at least 5 major hospitals within a 25 miles radius.

It does help to know that others are dealing with this (sorry, but at least I'm not crazy, or else we all are and that's ok too).
Hang in everybody and I will too,
jacky

After Effects
Jacky,

Please be sure to look at any meds you were taking prior to your treatments (and continue to do so). While I am no doctor, the chemo may have had some sort of effect on you physiologically, which could mean that your body now tolerates things differently.

For instance, prior to my bypass, I was on a cholesterol drug, with no real issues, but following the bypass, had all kinds of funky mental things going on. The thing is, I found this out on my own through list support. My doc still disagrees with my opinion, but a fact is a fact.

Currently, I am dealing with SOB issues as well. I am seeing a pulmonologist who has me going through a PFT as well as a Pulmonary Stress Test this week. She stated that there was the possiblity that my BP med could be causing the SOB. So of course, I start researching that drug and I come across all kinds of info.

I need to be careful, because I am not a doctor, so I shouldn't be acting like one. But I am a member of my treatment team. On one hand, I am hoping this to be med-related, but then again not, because admittedly, I do need assistance with my cholesterol and BP. But I've been rather thick-headed since my chemo/rad days decades ago. No more side effects. Eventually I cave in, but when something pops up that I can no longer tolerate...

I guess, long-story short (too late for that I know), look at your meds, consider the weather conditions, realize that you are not that far out from treatment (it takes a while to recover), and do not be afraid to keep pushing your med team for answers. Please let me know if I can help you further.

Paul E. (Hodgkoid2003)

youngen2505

Finding post chemo harder emotionally then going through it.
When I was diagnosed I was scared and surprised. But went into got to fight and win this battle mode. Not that chemo ended, about a month ago, I worry more then before, I feel that I now have one less option for treatment and if it comes back I am at a much higher risk of death. I have not seen my doctor since my last chemo and I will go and get all my check up but wish i never had to see him again. he's nice man but just the thought of chemo makes me sick. I feel like I have so much life to live, I am 24 and don't want to waste any of it. I don't want to work because I am away from my 19 month old son and feel like I am missing out when I am gone. But I want to give him the best future possible and feel I should have a career. It's like I don't know what to do with my life now?????
-Melissa

hodgkoid2003

youngen2505 said:

Finding post chemo harder emotionally then going through it.
When I was diagnosed I was scared and surprised. But went into got to fight and win this battle mode. Not that chemo ended, about a month ago, I worry more then before, I feel that I now have one less option for treatment and if it comes back I am at a much higher risk of death. I have not seen my doctor since my last chemo and I will go and get all my check up but wish i never had to see him again. he's nice man but just the thought of chemo makes me sick. I feel like I have so much life to live, I am 24 and don't want to waste any of it. I don't want to work because I am away from my 19 month old son and feel like I am missing out when I am gone. But I want to give him the best future possible and feel I should have a career. It's like I don't know what to do with my life now?????
-Melissa

A New "Normal" - Emotions
Melissa,
You are going through what so many of us, safe bet, nearly all of us, have gone through. For so long, you have not had control of your life. You've had doctors, treatments, even side effects dictating how your days and weeks were going to go.
The hard part, is getting back to normal, the way your life used to be before cancer. The truth is, it will never happen. You have had a life-changing challenge. What was normal for you then, is lost. Some often use the term, "grief". Combine feelsing of grief for what we lost, and add that to the uncertainty in our future, but more importantly, add back into your life, control. There is a sick comfort in not having control of our lives while battling cancer. Because as long as we are being treated, we believe that we have the support to survive because others are in control.
Again, what you are feeling is totally normal, and it will pass. As each follow up comes and goes, the further you go out from treatment, the more confidence you will develop that you have beaten a mighty opponent. This can never be understated. This was a huge fight for you. Only you will truly know what you went through, though many of us understand.
One suggestion, and I know the temptation will come, but please, make sure you do your follow ups. There will come a time, when you feel you won't need to, especially when you hit five years out, ten years out... and so on.
Melissa, it will get easier. Big congrats on your remission.

Paul E. (Hodgkoid2003)

Pet Lover

hodgkoid2003 said:

A New "Normal" - Emotions
Melissa,
You are going through what so many of us, safe bet, nearly all of us, have gone through. For so long, you have not had control of your life. You've had doctors, treatments, even side effects dictating how your days and weeks were going to go.
The hard part, is getting back to normal, the way your life used to be before cancer. The truth is, it will never happen. You have had a life-changing challenge. What was normal for you then, is lost. Some often use the term, "grief". Combine feelsing of grief for what we lost, and add that to the uncertainty in our future, but more importantly, add back into your life, control. There is a sick comfort in not having control of our lives while battling cancer. Because as long as we are being treated, we believe that we have the support to survive because others are in control.
Again, what you are feeling is totally normal, and it will pass. As each follow up comes and goes, the further you go out from treatment, the more confidence you will develop that you have beaten a mighty opponent. This can never be understated. This was a huge fight for you. Only you will truly know what you went through, though many of us understand.
One suggestion, and I know the temptation will come, but please, make sure you do your follow ups. There will come a time, when you feel you won't need to, especially when you hit five years out, ten years out... and so on.
Melissa, it will get easier. Big congrats on your remission.

Paul E. (Hodgkoid2003)

A New Normal
Paul, You are So Right. After Cancer & Treatments, your life is now A New Normal. I am now 18 months out of treatment and I still feel fatigued. I didn't drive my car for a year. But several years ago, I learned A New Normal, when I was 38, with 3 children, happily married for almost 20 years and in just one day, my life changed forever, as my wonderful hudband was killed during a store robbery. When I look back, it seems I lost 4 years after that.I was so self centered, why me? I had to work multible jobs to support my children and it took me the 4 years to realize that life goes on and there is absolutely nothing you can do about yesterday. You Have to live for today and not worry about tomorrow, because we Never know what tomorrow will bring. This January my Dad became ill and He needed me, so I had to forget about me and do for him what I could. He passed this past April and it was devastating to me, but I had to go on and do what I needed to do. I'm still taking care of his affairs, because he trusted me to do that for him. I still get fatigued, but know that the Dust and dishes will be there tomorrow. In the spare time I have, I enjoy my pets, my garden, my friends, my grown children and my 14 grandchildren. Keep happy thoughts and remember that Stress is the #1 thing to bring your health down.I definitely try not to think about cancer every day. I look forward to seeing my Oncologist, to hopefully hear, everythings fine, but if it did come back, then I will think, well we caught it early and will have high hopes to beat it again. If not, then God has determined that my work on earth is done. The last thing I want is to die soon, but we all will some day and I am so Thankful for each day I have on this earth.
I also have breathing problems, but I have emphsema and COPD, so I am treating that. Go to a Lung Specialist and get checked out.I am also going for physical therapy for 2 degenerated disks in my neck and the therapy has done wonders for me. My Best advice is to Try hard Not to stress about problems. Do your best to deal with them. When I think about my problems, I try hard to see that there are so many people worse off them I am. Then I feel very Blessed.I sure hope that I have been encouraging to the ones that are having a hard time with worry and dread, that cancer might come back.
Alice

Hestia

hodgkoid2003 said:

After Effects
Jacky,

Please be sure to look at any meds you were taking prior to your treatments (and continue to do so). While I am no doctor, the chemo may have had some sort of effect on you physiologically, which could mean that your body now tolerates things differently.

For instance, prior to my bypass, I was on a cholesterol drug, with no real issues, but following the bypass, had all kinds of funky mental things going on. The thing is, I found this out on my own through list support. My doc still disagrees with my opinion, but a fact is a fact.

Currently, I am dealing with SOB issues as well. I am seeing a pulmonologist who has me going through a PFT as well as a Pulmonary Stress Test this week. She stated that there was the possiblity that my BP med could be causing the SOB. So of course, I start researching that drug and I come across all kinds of info.

I need to be careful, because I am not a doctor, so I shouldn't be acting like one. But I am a member of my treatment team. On one hand, I am hoping this to be med-related, but then again not, because admittedly, I do need assistance with my cholesterol and BP. But I've been rather thick-headed since my chemo/rad days decades ago. No more side effects. Eventually I cave in, but when something pops up that I can no longer tolerate...

I guess, long-story short (too late for that I know), look at your meds, consider the weather conditions, realize that you are not that far out from treatment (it takes a while to recover), and do not be afraid to keep pushing your med team for answers. Please let me know if I can help you further.

Paul E. (Hodgkoid2003)

Paul, thanks for comments
Thanks for responding. I saw cardologist, had Echo..., EKG, chest x-ray, and having non-treadmill stress test on the 3rd of Sept. No problem with lungs according to x-ray. Heart function down from Echo had last Dec before starting chemo and rituxan. Am checking with other docs or previous meds, some of which have been changed.

Did have port removed, that's healing slowly but is definitely healing. thanks again for input.
jacky

MichelleHenry

Dee1217 said:

No, your not alone
I too find it really hard to be a survivor. Some think now that treatment is done and my hair is back that I'm fine. When reality is, I'm not. My joints hurt every day, I am now single so life is totally different for me. I dread everytime I have to call my pcp because they don't want to treat me because I've had cancer and oncologist don't want to see me cause I'm not "in treatment" anymore. I get very tired of feeling like a yo-yo.

Joint Pain
I came to this post because I can't sleep. I am on Celebrex, Cymbalta and MS Contin for pain and still can't sleep at night due to the pain. I actually HATE going to my bed. My husband doesn't quite understand (as understanding as he is) how I can't fall asleep at night. He says all I have to do is close my eyes. I WISH! I toss and turn all night. My joints hurt so bad. I actually drove myself to the ER (with my 4 year old son) one early morning because I was going insain due to pain. Will this ever go away? I try SO hard to live a normal life. I am still pretty weak, but I try to clean house, work, cook and take care of the kids, but really, I feel like I can't sometimes. By the end of the day I can't sleep if I do what a "normal" mom does. How do you get through it?

hodgkoid2003

Pet Lover said:

A New Normal
Paul, You are So Right. After Cancer & Treatments, your life is now A New Normal. I am now 18 months out of treatment and I still feel fatigued. I didn't drive my car for a year. But several years ago, I learned A New Normal, when I was 38, with 3 children, happily married for almost 20 years and in just one day, my life changed forever, as my wonderful hudband was killed during a store robbery. When I look back, it seems I lost 4 years after that.I was so self centered, why me? I had to work multible jobs to support my children and it took me the 4 years to realize that life goes on and there is absolutely nothing you can do about yesterday. You Have to live for today and not worry about tomorrow, because we Never know what tomorrow will bring. This January my Dad became ill and He needed me, so I had to forget about me and do for him what I could. He passed this past April and it was devastating to me, but I had to go on and do what I needed to do. I'm still taking care of his affairs, because he trusted me to do that for him. I still get fatigued, but know that the Dust and dishes will be there tomorrow. In the spare time I have, I enjoy my pets, my garden, my friends, my grown children and my 14 grandchildren. Keep happy thoughts and remember that Stress is the #1 thing to bring your health down.I definitely try not to think about cancer every day. I look forward to seeing my Oncologist, to hopefully hear, everythings fine, but if it did come back, then I will think, well we caught it early and will have high hopes to beat it again. If not, then God has determined that my work on earth is done. The last thing I want is to die soon, but we all will some day and I am so Thankful for each day I have on this earth.
I also have breathing problems, but I have emphsema and COPD, so I am treating that. Go to a Lung Specialist and get checked out.I am also going for physical therapy for 2 degenerated disks in my neck and the therapy has done wonders for me. My Best advice is to Try hard Not to stress about problems. Do your best to deal with them. When I think about my problems, I try hard to see that there are so many people worse off them I am. Then I feel very Blessed.I sure hope that I have been encouraging to the ones that are having a hard time with worry and dread, that cancer might come back.
Alice

Alice - A New Role Model
Alice, you wrote so well. You live not just a new normal, but one that is going to inspirational to so many. Thanx.

Paul E. (Hodgkoid2003)

ldot123

hodgkoid2003 said:

Alice - A New Role Model
Alice, you wrote so well. You live not just a new normal, but one that is going to inspirational to so many. Thanx.

Paul E. (Hodgkoid2003)

I understand
I went through the same anxiety - 20 years ago. Had Hodgkins and the proces of survivorship was an issue. It does get better with time. I wish you well.

Cheers, Lance

DennisR

ldot123 said:

I understand
I went through the same anxiety - 20 years ago. Had Hodgkins and the proces of survivorship was an issue. It does get better with time. I wish you well.

Cheers, Lance

Surviving cancer
I was diagnosed with stage 4 or 5 NHL in 2000 which had presented as a grapefruit sized tumor in my descending colon and which had perforated the colon and spread through the entire lower right quandrant completely involving my appendix and surrounding tissue. I had two major surgeries followed by 8 sessions of R-CHOP chemo which eventually resulted in a complete remission for nearly 8 years. (The Oncologist considered my cancer as "cured" after 5 years). There were many complications with the surgery, including a serious infection which resulted in a 2 month Hospital stay. I survived and lived a fairly normal life until May, 2008 when I was again diagnosed with the same cancer in the left side, again in my large intestine, (Stage 2 this time, so I guess I'm gaining on it)) and I underwent 8 more Chemo treatments designed to disolve the new tumor. The Chemo worked, the tumor disappeared, however the prognosis was grave, Odds were that the cancer would continue to recur only in much shorter intervals, ( as few as 1 or 2 months to possibly a year between recurrances) unless I underwent a Bone Marrow transplant which would increase my chances of a complete cure to approximately 50%. Geez, Wow! I opted to do the BMT/Stem cell transplant and was approved for the procedure through the VA even though I was 3 years past the cut-off age for the somewhat dangerous BMT Procedure. I completed the BMT procedure in the Seattle VA in Seattle, Feb, 2009 and have been recovering slowly, but surely since. Biggest problem I have today is Anemia caused by the Radiation/Chemo/BMT treatment and makes me very short of breath and without stamina. My hair grew back, and in a color I haven't seen since I was about 35, dark brown, and not a gray hair in sight, my Barber was so thrilled, she now gives me Free haircuts.
My main issues now are mostly Mental, I've lost my entire support group to cancer in the past year and a a half, 16 dear souls all long time friends and relatives, including a younger brother (47 years old) and a very dear Sister-in law who underwent her treatments at the same time as me,but died in July both of whom were diagnosed in June, 2009 after me, and today I find myself questioning my reason and purpose for being here at all. I have always been very sure of myself with regards to fighting this insidious Disease and though I've been seriously scared a few times thinking I might not make it, I have always been able to come out fighting and determined to continue fighting. I'm now finding myself unable to encourage others the way I used to and am tending to withdraw from people who come to me for advice and encouragement thinking, "What's the use, I'm not helping anybody".
For the first time in my life I'm finding myself in need of support, but with no real support group or network to discuss things with. I am seeing a Counselor at the VA now and she seems to be helping me work my way through this dilemma, though at unexpected times, I find myself questioning every aspect of my spiritual being and experiencing nearly every emotion response there is, from anger, to fear, to resentment, to self pity. I'm getting through it OK, but it's been the worst time of my life... and it's coming at a time when I SHOULD be the most Grateful and Thankful.
Thanks for reading this.
DennisR