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Finding survivorship harder than treatment, am I alone?

mcarva
Posts: 17
Joined: Oct 2008

Hi,

This is my first post, although I have been a silent member for a little bit. I was diagnosed with Stage 2A, nodular sclerosis Hodgkins Lymphoma in May of 2007. I was 48 years old at the time and had just celebrated my 25th wedding anniversary. I had 6 rounds of ABVD, no rads. Went into early remission and basically did not have any problems with the treatments. I also found at the time that I became very spiritual, positive and a real believer that I would beat this and never have to deal with it again. I am now 1 1/2 years in remission and I feel things are "falling apart." I get depressed and very fearful that it is going to come back again, or that I will get another type of lymphoma or that something else will show up on my scan. I know this is not the way to live and it does kind of surprise me because I was so strong during treatment. I never complained, worked full time, and the only hurdle I had was a short hospitalization due to low blood counts. It didn't bother me that my hair thinned so much I had to wear a wig (in fact, I loved my wig) and I seemed to appreciate and notice all the "little things" in life. I now feel like a sitting duck, just waiting for the other shoe to drop. I want to feel the peace and positiveness I felt when I was going through treatment, and all I feel now is lonely and fearful. If anyone else has had these feelings, I would love to hear your story and any coping tips you can give me.
God Bless.
Mary Ann

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Mary Ann,

First, please know that how you feel is normal. And having BTDT, I will tell you that it does get easier. I am over 19 years out now for HD, stage 3, NS. You will find, that soon your oncology follow-ups will start getting further apart, and that means simply, your chances of survivorship are increasing each day. Soon, you will hit year number 5 and then you will be offering encouragement.

It is one thing to be diligent about follow up care, but it is almost expected to be paranoid. You've faced such a tough fight, with something that decades ago killed. It was one of the scariest times in my life, and I'm sure you may feel that way also. But 25 years of marriage, congratulations on that as well.

Do not be afraid to vent, seek out support. There are so many out here who have been there, done that.

Paul E., (Hodgkoid2003)

mcarva
Posts: 17
Joined: Oct 2008

Hi Paul,

Thank you for your support. I find it hard to believe now that it will get easier, I am so worried about relapsing. Maybe I am being paranoid, but I seem to feel that relapse is more common in Lymphoma than other cancers. Is that my hypochondria talking or is there some truth to that? I saw on some of your other posts that you mention long term effects clinics. Of course, I know I am not anywhere near long term yet (hope to get there, though), but it is something I will look into when the time is right. I do have a question about bleo and lung function. I went through 12 treatments of ABVD and when I hit my 10th treatment, my pulmonary function tests showed my lung capacity had decreased but my oncologist did not feel it was enough to stop the bleo. So I continued with the full course of treatment. I did not have radiation. When I had finished treatment, I felt that I could not take a full breath in, it was like my breath was getting "stuck." I don't have that feeling anymore but I do notice that my breath kind of gets "stuck" when I am talking in long sentences. It's like I don't have enough air to finish, if that makes sense. Did you experience anything like that and if so, do you know of anything I can do to increase my lung capacity? Being a hypochondriac all my life, I am very vigilent about having all my regular screening tests, in addition to my onc checkups. Although the hypochondria has been a thorn in my side (and not easy on my husband or children either) I feel this time it saved my life because it was so hard for me to get diagnosed andI just kept pursuing it and sought a second opinion. I wasn't listened to by several doctors. This has caused a lot of anger and I know it is not helpful to my healing. I am so happy for you that you are 19 years out and it certainly is encouraging for me to hear that. Any suggestions you might have for me on how to stay positive would be very much appreciated.
Much peace,
Mary Ann

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

Mary Ann,

I was aware at the time (1988) that Bleo could have an effect on my lungs, and I do recall having an arterial blood test (much less fun than a regular test for a needle-phobe like me), due to breathing issues. To my understanding, the radiation is what caused my problems. I also remember having breathing issues (I assume due to the bleo) and they stopped when treatments were completed.
Please do not ever feel that your fear of relapse is due to hypochondria. It is totally normal. I went through it also. In fact, I go through something similar now, though not HD relapse, more late effect issues (what's next) following my heart surgery last year.
The biggest advice that I could give to you, is don't ever feel the need to give up seeing an oncologist. There are so many guidelines to help survivors get through, that we didn't have decades ago.

Paul E. (Hodgkoid2003)

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

First of all welcome to the discussion boards. I am sure you will soon find that you are not alone in your journey after cancer diagnosis, wherever your journey may lead you.

You may as well have put my name on the bottom of your post, at some point in my journey, and I know that many others on here would feel the same way. Of course there is fear involved and of course depression can rear its ugly head but the trick is not to get burdened down by either of those things or any other phase you might get into, like anger for example. If you find that depression or any other symptom is overwhelming your life and you are not finding enjoyment in the things you used to enjoy then it's time to seek professional help with a good grief counsellor or someone like a minister who you might feel better with. We go to family doctors when we have something amiss with our bodies but people seem so hesitant to get any help with psychological issues and I don't know why that is. You are not crazy you just might need help getting through rough spots or major fear with say depression.

I am a 20 year survivor oh NHL and when I feel myself getting too down or angry or whatever I check in with my psychologist just to make sure I am thinking straight and haven't gotten myself into a bad place and it always works. I have developed an anxiety condition because of so much medical intervention and when I feel extra anxious I have meds at home to help me through but most months I don't need even one.

You will also find this discussion board very freeing, you can say exactly how you feel and no one will judge you and will most likely help to validate you in many areas of this journey. If they don't agree with you they will tell you but they will do so in a very kind and reassuring way, many of them loaded with helpful suggestions. Our friends and family want the best for us and their support is invaluable but unless you have been there as a cancer survivor they really can't totally understand where you are coming from but we can.

So once again welcome to the board, post as often as you feel the need to. We also have a live chatroom here on this site if you want to talk to others on a more active basis. Often times we can get through the first stages after diagnosis with courage and conviction but it isn't until months later that we start feeling ourselves falling apart so again, you aren't alone in how you are feeling.

Hope to see you again on the boards. Blessings, Blueroses

midwest-mom
Posts: 3
Joined: May 2009

Hello Mary Ann,

I am new to the site also, I just learned about this site after contcting ACS for help. I have been feeling so alone and helpless.

I was diagnosed with Hodgkin Lymphoma stage-4, in June 2007. I was told that it had went into my liver and lungs but still had a good chance of beatting it. I went through 8 cycles of ABVD. I have been in remission for 15 months now. I have many side affects from chemo.
I have been raised in the church all of my life and very spiritual. I never once thought that I was going to die from cancer. I just thought of it as a nother phase of life I will beat it and go on. I am just finding it harder to go on. I have always been a very independent person and could look at any situationa and decide what is the best action to take. Now its hard for me to decide what to make for lunch.
I'm a single Mom and my daughter is a great help in my motivation to keep moving forward it is just getting harder and more emotional for me.
I don't know if this has helped you but it sure has helped me just putting it out there. This is the first time that I have really let myself say this out loud.
Good Luck,
Tabytha

mcarva
Posts: 17
Joined: Oct 2008

Hi Tabytha,

My goodness you were diagnosed in June of 2007 and I was diagnosed in May of 2007 and finished chemo in November of 2007. I had 6 cycles of ABVD. What side affects are you still experiencing from the chemo? Our stories sound alike in a lot of ways. When I was in treatment, I felt so strong, positive and determined. The longer I stay in remission, the harder it gets for some reason. I try to plan activities that are fun but there is that nagging thought in the back of my head that what if it comes back and I can't go? I'm afraid to look too far into the future because I don't want to get disappointed if it should rear its ugly head again. That's wonderful you have your daughter who helps to motivate you. I don't know if you would consider this, but I am in therapy and it does help. However, I think I need to find a therapist or social worker who specializes in counseling people who have survived cancer. Or maybe find a support group. I try to read inspirational books and that does help, but sometimes I just get so caught up in my fear of relapsing that I can't bring myself to do much more than the bare necessities, such as working and taking care of the house. It's like I get in a rut. I'm glad you feel better that you expressed how you are feeling. We are all here to help each other and I am here anytime you want to chat.
Mary Ann

KYPam
Posts: 6
Joined: Jun 2009

Mary Ann,

I feel exactly the same as you do. I am 1 year past dx. I am not
in remission yet, but awfully close. Treatment has ended and I do
worry alot. I feel alone, also. My husband doesn't really understand
that I don't feel well most of the time. The fatigue is really bad.
I have follicular lymphoma, Stage 3B, Grade 3.
People always say that I look healthy. I never lost my hair, it just
got thinner. I was told at dx that it would come back no matter what,
just a matter of when. I am 42. I think we fall apart after treatment,
surgeries, tests, etc. b/c we exhaust overselves during treatments to
remain so strong. I tried hard not to cry too much in front of family
b/c they were having a more difficult time than me dealing with it,
especially my husband.
I believe that women try so hard to take care of everyone and be super
woman that we collapse once we feel that everyone around us is safe and
content.
I try to focus on all the positives and stay as active as my body will
allow. Cancer changed my life and my idea of "normal." That is hard to
accept. I am finishing up the last details for my daughter's October
wedding and am trying to take care of my mom and dad so I usually feel
overwhelmed. I only have 1 more work day b/c I work in the school system.
I get about 8 weeks off during summer which is really nice. I work in a
high school. The teenagers keep you feeling young. I enjoy it.
I would love to chat again.

Best wishes,

Pam

mcarva
Posts: 17
Joined: Oct 2008

Hi Pam,

First of all, let me send you good thoughts for a speedy remission. Isn't the worry just so draining? Your post sounds so much like what I am going through. My husband was supportive when I was going through treatment, but to be honest with you, I went through treatment rather easily. I worked full time, was not sick, and only had a few bouts of fatigue where I could not get off the couch. I did lose most of my hair and wore a wig so I did not look or act like a typical "cancer" patient, whatever that is. Now that treatment is over and I am in remission, he doesn't quite understand all my worry and anxiety. When I say I'm afraid it is going to come back, he says "no, you beat it." I think he is trying to be encouraging but that's not what I need to hear, although I would give anything to know that statement was true. Everytime I am tired or my neck feels funny or something else is not quite right, I just "know" it has come back. I try to keep myself busy as best as I can but it's so hard. I have a great family and a 10 month old grandson, whom I just adore. You're right, kids do keep you young. I just feel so "exposed" and out there. No comfort zone. Kind of like a sitting duck, just waiting. It stinks. Therapy only helps so much; I know I have to do a lot of the work myself. I'm starting to realize that cancer is a lifelong thing; it's not over when you are in remission or even when your doctor says you are cured. Then there's the long term effects of treatment to deal with. Well, on a good note congratulations on your daughter's upcoming wedding; you must be so happy about that. My cousin is taking care of her elderly mother 24/7 and I just don't know how she does it. God bless her I tell her she has angel wings on. I can only imagine how overwhelming that must be for you to deal with in addition to your own health concerns. Please try to take time for yourself and treasure each moment, it's what we all need to do. P.S. I envy your 8 weeks off in the summer lol. I'm still trying to hit the lottery! Take care,
Mary Ann

tim4343
Posts: 23
Joined: Jun 2009

Well after reading the posts here it gives me a lot of hope for myself , have just started seing oncologist 4 weeks out have enlarged lympnodes in chestsome are about 1 inch , and now have discovered skin lymphoma ??? also scheduled for surgery for biopsy this month but all the stories here give me a lot of strength and actual ake me smile because of all the comments and encouragement people give each other thats a plus Keep itup everyone the world needs more people like each one on here AGAPE/

dixiegirl's picture
dixiegirl
Posts: 1043
Joined: Apr 2006

Tim

I wish you the best of luck with your upcoming biopsy. This cancer is not fun, but we can do this. We just need the tools. We need peace of mind. We need hope. Once the tests are done this gets going so darned fast our heads spin. We come here for compassion and hope. Keep the humor going....it REALLY helps. Come to CSN chatrooms.

Good Luck my friend,

Beth

Dee1217
Posts: 2
Joined: Jun 2009

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.

mcarva
Posts: 17
Joined: Oct 2008

Hi Dee1217,

I'm reading your post and need your help in understanding something that you wrote. You said your pcp won't treat you because you've had cancer and your oncologist doesn't want to see you because you are not in treatment. Does that mean if you are feeling a symptom or just not feeling well and call them, you are being turned away? I don't understand this. Because you've had cancer, depending on the symptom you are complaining about, either your pcp or oncologist should be all the more vigilent and give you the time you need to address it and either ease your mind or give you an action plan for whatever is bothering you. Have you addressed any of this with your doctors? You've been through enough, the last thing you need now is to feel like you are not being listened to. Please let us know how things are going.
Mary Ann

MichelleHenry's picture
MichelleHenry
Posts: 11
Joined: May 2009

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?

judyy
Posts: 19
Joined: Jun 2009

Hello Everyone,
It is great to know that others are feeling the same way as I That sounds strange, you know what I mean ha. I have DLCBL stage IV. The lymphoma is in my bone marrow in my left hip.
I completed my treatments on April 29. no remission unfortunatly. But everything is smaller. I am having a BMB this Friday. I hate it and it is making me sick just knowing it is coming.
Anyway, I two find it so hard after treatment I thought it was because I did not get remission, but I see that it is just hard. I have the same fear and dread and am wishing I was back on the Chemo. at least I was doing something then Now I am just waiting. !!
My husband died in 2004 so it is just me and my children who are grown and married. I so wish for a spouse. I am very blessed and am feeling better that I have in a long while but there is always that darn but out there.
Mary Ann I know what you mean about little things, I am absolutly in love with trees now. I always like them but I am just amazed by there beauty now. It is a crazy world we live in.. But still I want out of it so badly. I wish this was a dream. I am also falling apart at this point always on the verge of tears. maybe I shoud try some therpy. I really did not think it would help because reality can not be changed. You all seem to feel it helps so I will try. Did you go to someone who works with cancer patients or just anyone?

Blessings to all
Judy

mcarva
Posts: 17
Joined: Oct 2008

Hi Judy,

I'm sorry what you are going through, but the good news is that you have responded to your treatments. I want to wish you the best of luck with your BMB and please let us know how you are doing. As much as we didn't like to go through treatments, yes, we were actively doing something to "fix" the problem. And even if the problem got fixed, after treatment, there we were hoping it would not "break" again. You are correct that reality cannot be changed. However, what we can change is how we think about a situation. To quote Dr. Wayne Dyer "when you change the way you look at things, the things you look at change." I read a lot of his books and also watch him on public television. His writings do help me. As far as therapy is concerned, I am a firm believer in it as long as you find a therapist that you have a good rapport with. Since I have a long history of anxiety, I have seen a number of therapists. However, now that my anxiety has been taken to a new level because of the cancer, I will be seeing a psychiatrist whose speciality is with oncology patients. My appointment is in a couple of weeks. She works at the hospital where I was treated. Although I am married, my husband does not fully understand what I am going through. It is comforting to be able to relate to others who know exactly what you are talking about. These boards are a wonderful place to be understood, express our fears and anxieties, gather information, and draw on each other's strength and support. Yes, Judy, trees are beautiful. Life is beautiful. Hard at times, not fair at times, disappointing at times, but it also holds so many precious and wonderful moments. Good luck.
Mary Ann

judyy
Posts: 19
Joined: Jun 2009

Hi MaryAnn
Thanks for your post. I will look at Dr Dyer's books. I have started a little yoga. the breathing is helping. I just can't get up and down with any speed LOL

I had my BMB yesterday . It was not too bad. Although I told my doctor I was going to the Mayo Clinic next time because they will sedate you. She just laughed. We are in Texas so that would be a lot of trouble ! She does a really nice job of it But boy the first doctor I had well-
I can still remember the pain!!!!! I get my results next Thursday. fingers crossed.

I am feeling pretty good today Still so tired but my HGB is 10.8 which is so high for me.
I hope you are well and enjoying today. It is very hot here close to 100 I went out earlier came back in Maybe later around seven I can go be outside.It is very nice to have people who understand It is impossible to understand isn't it. Especially when you are not getting treatment. Everyone thinks you are fine !!! and back to normal which I don't think you can be again I can't imagine being so sure of things again. I guess I will close I feel like I am rambling My chemo brain is still alive and well lol

Judy

I

Hestia
Posts: 26
Joined: Jun 2009

I totally understand the shortness of breath. I get that and it is very scary to me. It often happens early AM when I am just waking up, in fact, sometimes it wakes me up. I can't get a deep breath. One of the things I have to do is force myself to calm down, to relax, yeah, right, relax while trying to breathe. The other thing I do is take as deep a breath as I can and hold to count of five. I draw in air thru mouth, let out thru nose. I try to remember to do this off and on during the day, to build up lung capacity. I finished chemo and radiation 4/22/09 and still have residual side effects, like the breathing issue, fatigue and food tastes funny (that is not a scientific description, but you know what I mean!!).
There is a small plastic "thing" I was given in hospital to breath into and push a ball up a tube to increase lung capacity. Unfortunately, I threw it away. Would like to get another. Maybe thru oncolgist's office??? Hospitalization was few years ago and not cancer related but lung thingy (like my continued scientific wordage?) was used for all patients who had anthesthesia.
Also relate to "sitting duck" feeling. I, like you, worked hard, mentally and spiritually, during treatment. Now it is as if I am sitting around waiting for the next batch of "work" to show up. That is why I joined Cancer Survivors Network. Not only to relate to others but to help me keep focused on life now and not what it might or might not be down the road. I fight depression, have dealt with it since early teens but it has gotten worse lately, especially since remission. Go Figure!!! I am on anti-depressants and have been for years. I just went thru changing meds and getting a new doctor for managing meds for depression. Call him the Medicine Man, not to his face but when I remind myself of an appointment I tell myself I have an appt with Medicine Man. There are always new meds and this new med seems to be helping, but difficult for me to know if fatigue is caused by depression or is side-effect. Just know you are not alone and definitely are not, not I repeat, a hypochondriac. Best of luck, Hestia

mcarva
Posts: 17
Joined: Oct 2008

Hi Hestia,
I can really relate to what you say in your post, there are so many similarities in the way we are feeling. I appreciate your suggestion for the breathing exercise, I just tried it a few times and will try to remember to do it on a daily basis. Can't forget to say congratulations on finishing your treatment. What was your diagnosis? I didn't have radiation and I'm wondering if that accounts for the reason food does not taste the same to you. I do take an anti-anxiety medication but I am going to see an oncology psychiatrist and will see what she may recommend for my anxiety and hopefully get more suggestions on how to cope with this uncertainty. Fatigue can very much be caused by depression as well as being a side effect of a medication. And also, don't forget you are recently out of treatment and the fatigue could be resulting from that too. I find myself getting very tired when I am having one of those days when I obsess over every ache and pain and keep my thoughts focused on "is it back?" Then I start obsessing over the tiredness and think that maybe it is coming back and it becomes a vicious cycle. I know I need to get back to that place I was in when I was having treatment where I read inspirational material, kept my mind focused on the positives and really believed this was not going to get me. Period. One step at a time and it really helps to receive support from others who understand. Best of luck.
Mary Ann

Hestia
Posts: 26
Joined: Jun 2009

Hi mcarva
Sure does help to receive support from others and also to know that we often go thru the same symptoms and therefore I am not crazy, or then again, maybe we are all crazy!!! On Saturday I went about 50 miles south of where I live to a huge Flea Market. I went with two friends, it was my turn to drive but was so tired and my very bones ached so much I had one of my friends drive my car. The market is huge and we separated and said we'd meet in 2 hours. I made about an hour and each step felt like my last (sometimes I tend to exaggerate, just a bit). Anyway I finally went to the gate where we decided to meet and 1 and 15 minutes early. Now, here is the chemo brain part. The next morning when I got up (I live alone except for my main caretaker, my 17 year old Jack Russell) I was so disgusted at having my day at the flea market spoiled by aches and pains, I got in the car, drove the 50 miles,re-did the flea market (spent another $70), stopped for grocery shopping on way home and came home and fell across the bed for a couple of hours. But I "erased" the bad day at the flea market. Can you relate to that experience at all? Maybe it would be better if you didn't, cause I sure can't go along repeating experiences that don't suit me. Sure never felt that way before.
I had NHL, diagnosed in Oct 09, radiation, then chemo cause cancer discovered due to spontaneous break of right arm and break could not be treated during radiation and chemo. Had to heal on its' own.. Am now in remission, next PET early August. Never thought remission would give me so much trouble, like, it's over for now, let's get on with life. Whoops, am too tired, food turns my stomach (Oh no, am I pregnant - don't think so since I'm 73 years old) well, if I'm 73 am I too old for cure? No, of course not, why do I doubt everything?

Went to Moffit Cancer Ctr in Tampa, first they said whole shoulder needed replacing, now they stay bone healing looks strong enough to avoid replacement. Am in physical therapy now for mobility and strenthening of arm. Arm was held against my side since Oct till PT in late May started. Have some mobility and strength back; but can't lift arm above waist level and was told probably won't get full use back. My very favorite thing is to walk in pool (because of post-polio legs are not too strong), but I can walk in pool. About 11 years ago I planted Chinese bamboo at corner of pool cage and have great shade with bamboo but mostly love sound bamboo makes when wind, no matter how slight, blows. The sound is musical to me and very relaxing.
I had BMB, and bone biospy. I will NEVER understand doctors attitude that they don't give pain meds for those procedures. I think each and every one of docs should have procedures done once a month until they get the picture. I asked why and was told "They don't like to overuse pain meds." DUH, who is "they." The doctors????? Personally I was not too concerned about "overusing" pain meds. With the broken bone in arm and shoulder I had enough pain to share with each and every doctor. I did take care of myself to some extent. I had 5 mg percocet, and took 1 when got to hospital and one a few hours later when doctor finally showed up. Doctor scheduled didn't show and the hospital staff scrambled to find another. Good guy, he didn't want to continue after he got the bone, didn't want to go futher for marrow, but I told him I was not going thru this again in the next couple of days, to go for it. He said I was sure a tough ole woman, didn't tell him I had taken care of my own pain meds.
Have to end this and write out bills (UGH) Have a good day, take deep breathes and search out the positive in your life and enjoy.
Hestia

judyy
Posts: 19
Joined: Jun 2009

Hi
Good job on the flea market You are a "tough woman" lol I am going to the store in a bit and I hate it It just wears me out and sometimes yes every step does feel like my last!!!!
My legs hurt I can not always breath well. But I need to go. I like having choices to eat even though it seems I can not cook anything that taste half way decent ! I am not sure why that is. I made a blackberry cobbler yesterday and it and my stomach were not happy together.

I had a BMB Friday, It was not so bad my Doctor has a great way about doing them. It was not that painful. I took a Lorazapam before
(my friend) and then there were the 3 shot to numb the tissue. She had to pull 3 times and change the needle on the last pull and it seemed getting the bone piece was easier this time. I was proud of myself not crying and no sound come out of me. Maybe now at 64 I am a big girl. I would just as soon not do that again . lol I guess I will see this thursday how big I am when she gives me the findings of the BMB. I am feeling so good these last days It is almost like not having cancer. What do you suppose that is has the chemo brain finally taking over?
The deep breathing does help doesn't it? When do you find out about your biopsies? Good luck! My thoughts and prayers are with you and everyone. This is just so darn hard.
Everyone have a great monday It is hot here but maybe rain. We are praying for rain.

Judy

gagirl08
Posts: 15
Joined: Mar 2008

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.

summer2007
Posts: 1
Joined: Jul 2009

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
Posts: 17
Joined: Oct 2008

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
Posts: 1
Joined: Jun 2009

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
Posts: 17
Joined: Oct 2008

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
Posts: 1
Joined: Jul 2009

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's picture
kendupont
Posts: 2
Joined: Aug 2008

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's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

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
Posts: 19
Joined: Jun 2009

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's picture
Racht
Posts: 40
Joined: Nov 2005

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's picture
ralphie322
Posts: 20
Joined: Mar 2009

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
Posts: 26
Joined: Jun 2009

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's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

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)

Hestia
Posts: 26
Joined: Jun 2009

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

youngen2505
Posts: 3
Joined: Aug 2009

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's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

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
Posts: 2
Joined: Aug 2009

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

hodgkoid2003's picture
hodgkoid2003
Posts: 96
Joined: Apr 2009

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's picture
ldot123
Posts: 276
Joined: Apr 2008

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
Posts: 148
Joined: Sep 2009

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

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