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Long Term effects (physical/emotional)

Ultraman
Posts: 5
Joined: Jul 2003

Hey there. I'm new on the board and i was wondering if i could get some feedback on some of the stuff i'm currently dealing with.

i was diagnosed with Hodgkins IIA in November of last year (i am 28 years old), went through 4 months of chemotherapy and 1 month of daily radiation as well as daily nupogeon injections to keep my white count up. i feel very fortunate to have caught the disease early (not as early as i would've liked, but still pretty early). on top of my good fortune having survived cancer, i seem to have bounced back pretty well physically.

now that i'm in screening i find that i'm fighting general fatigue and depression daily. it's odd because i've always been very level headed. and even through treatment, i had a very straight forward, tolerant way about me. i never complained, no matter how uncomfortable i got. i found myself at ease with my job that i don't particularly care for and renewed my focus on the many things i enjoy.

but lately i've just been down in the dumps. i hate it. the fatigue plays a part in it, to be sure, but i just don't have the positive outlook on life that i did before. i'm in a bad mood constantly. i don't like to leave the house. worse yet, i'm starting to drink alcohol more. this is all compounded by emotions. thoughts like, what would i do if the cancer came back? would i have the will to fight it again? do i want to fight it again? would it be time to let nature take it's course or do i want to continue fighting? this is all followed by reasessments of my life thus far. what now? what do i want to do for a living? will i ever get married? or worse, would anyone want to marry me? am i considered damaged goods even though i have a clean bill of health otherwise?

you get the idea. i mean, the chances of it coming back aren't high at all. yet, i'm having all these overly-dramatic thoughts in my head. i hate being like this.

i guess my closing question is: have any of you had similar thoughts, depression, or emotional diffulty to such a large degree? if so, any ideas on how to cope with it?

dpomroy's picture
dpomroy
Posts: 136
Joined: Dec 2000

After all you have been through, of course you feel the way you do! This is a great place to start, but have you also checked out the chat room, support groups through your clinic or hospital for cancer survivors, or just someone you might know who has been through cancer and would be a good listening ear? I believe that after all the chemicals, stress and changes that our bodies have been through it would be even more amazing if we DIDN'T end up with some kind of depression or chemical imbalance of some sort. Don't let it go on for too long. Be honest with doctors about how you are feeling. Don't be too proud or ashamed to try some of the new antidepressants if your doctor recommends them. You aren't that far removed from your big ordeal. Maybe you were trying so hard to be positive and keep your chin up that now that everything is OK, you are beginning to feel all the normal things that most cancer patients do...fear, anger, etc., that you weren't allowing yourself to feel before. Be patient with yourself, take care of yourself. And yes, yes, yes, I think we've all felt this way.

mc2001
Posts: 343
Joined: May 2003

Hey Ultraman,
First of all I cant believe there is someone else out there who knows about UltraMan!! I used to watch that show DAILY when I was a little kid!! Anyway, back to addressing your issues:
I think what you are experiencing is the normal and VERY common dynamic of self realization. You are NOT immortal as once thought (guilty here too!) and as men we see the *possible* reality of having some long term side effects that may inhibit our ability to be completely independant. That is very normal. However, sometimes this can snowball and create terrible difficulties in our normal daily living. If you are sincere in your desire to improve your current emotional and physical state, you must be willing to be honest with yourself and decide what your biggest issues are and then down to your least problematic issues. Then you must be willing to accept treatment for that, in which ever way is best, which sometimes includes counseling and medicine. There is nothing wrong or shamefull about reaching out for help in this fashion. Take care, and God bless.
-Michael

sherra
Posts: 41
Joined: Oct 2002

Ultraman-
I understand alot of what you are feeling. I'm 23-I was diagnosed last August at 22yrs. old with HD Stage 2A. Since then I've completed 6 cycles of ABVD and 18 treatments of radiation and like you I had to give myself nupogeon shots (something I never thought I could get used to). My treatment has been sucessful (thank God!) but sometimes emotionally I can be a wreak. It started after chemo during radiation. I no longer wanted to go any where or do anything (except sleep). I dreaded seeing and talking to people and I began to feel completely hopeless. Out of nothing but desperation I went to my regular physican and trying my best not to start crying told her what was going on. I began taking antidepressives the same day. I know what I was feeling was completely normal in my situation, what I didn't and really still don't is why it took so long. If I was gonna be depressed and feel hopeless, why didn't I feel that way in the beginning or 3 months into chemo? Why all the sudden after completing 6 months of chemo and almost completing radiation?
The antidepressants have helped alot. I still feel down and I get angry sometimes that this had to happen to me, Why did I get cancer? Did I do something to deserve this? This website has helped alot, its good to communticate with people in similar situations but depression is a serious thing and it won't just go away. it may also be the cause of some of the fatigue you are experiencing. You need to talk with your doctor (or if your anything like me you now have several doctors), if you find it hard to go alone take a friend or family member-they are usually very understanding in this kind of situation. You have nothing to be ashmed or embarassed about-You have been through more than alot of people experience in a life time. Your doctor should be able to help you and they usually make could listeners if you need to talk. There may be several ways to overcome the feelings you have been having but I can't stress enough how important it is that you tell your doctor.
If you'd like to talk more you can email me at this website-I'd love to hear back from you.
Take Care
Sherra

pittsburghpete
Posts: 10
Joined: Jun 2003

A couple of thoughts from a guy who had treatment in 1969 and 1970 after being diagnosed Stage IIIA. The chemo back then was only MOPP, no ABVD. The radiation machines were more primitive, there was no shielding of the heart or coronary arteries, and the accuracy of the machines compared to today's equipment was probably like comparing a stone age spear to a smart bomb. I dont know what nupogeon is since we didnt have it, all I took to keep up my resistance was vitamin C.

It took maybe a year before I felt my vigor returning. The docs told me it would be a few weeks or a few months, but it took a long time, and the same for the nerves in my neck to grow back to where it felt normal again. I was depressed because I thought 1) why me and 2) I wont survive this, I am not the tough survivor type. I worried for years about recurrances.

I started to get serious about my health in the late 80s, then drifted back for a while to unhealthy lifestyle, then got back on a better track a few years ago. I recently did a three day bike trip...no huge mileage, less than 80 miles, although I have done some one day rides of over 35 miles. I've lifted weights till I am stronger than I was at 25 (though I'm no Arnold S.).

All those years I worried about recurrances were a silly waste of energy and concern. I gained nothing from them. I should have started the exercise a few months after finishing therapy, and it would probably have relieved the depression.

I was never much of a babe magnet, neither before Hodgkin's nor after, but I did manage to get married to a great woman and we have 2 kids. I think you would do yourself a world of good if you 1)started exercising regularly, just doing whatever is comfortable for you, 2) watch the booze, drunks usually look pretty stupid to sober people, 3) realize that much of romantic success is really connecting with a kindred soul. The babe magnets are sending out lots of signals that they are interested in women that they really are not interested in, but want to score with...is that really the kind of man you want to be, emotionally deceptive? You've just cheated death...you could easily have had asymptomatic cancer spread quietly through your body for years. Live a meaningful existence, not a shallow one. You write like a guy with a good brain in his head, and that has to count for something with intelligent women. As to career stress, that's a tough one, but you are in the same boat as a lot of other people. Some aspects of earning a living you cant do much to control, but you can control many other things in your life...how you look (to some degree), how you feel, whether or not you conduct yourself honorably with others. These things are damn important in a variety of relationships...romance, friendship, business.

Sorry if I rambled too much. At any rate, your fatigue will pass, exercise will help everything, drinking to excess with help nothing. Oh, and on the drinking, your liver has already been kicked around a lot disposing of all that chemo that was pumped into you, the booze on top of it probably is worse than for ordinary folk.

And one last thought. If it comes back, OF COURSE YOU WANT TO FIGHT IT. Dont even think any other way.

Hang in there bro.

Ultraman
Posts: 5
Joined: Jul 2003

Hey guys, just wanted to write back and say thanks a lot for all the advice and encouragement. i'm feeling a little bit better these days and i'm taking my vitamins and exercising more and more (like some of you suggested). it seems to be helping out a lot. the fatigue is still there, but i'm dealing with it. i'm not drinking a whole helluva lot (i was never a huge drinker to begin with) but i am still drinking. i think ideally i would want to stop that all together, but so much social interraction is based on going for a pint that it might be an unrealistic goal. relationship wise, well, i can't worry about that too much (cancer or no cancer). most of those thoughts were a bit on the overly dramatic side, as i said before, so i'm not going to waste energy worrying about it. but thanks a lot for the advice, nonetheless! i'm going to try to avoid medication for depression as much as possible, but i will definitely listen to a doctor's suggestion.

speaking of which, i'm going to run all of this by my oncologists the next time i see them (which will be soon since i'm in screening). dramerth, Sherra, et al, you are very right. i need to be honest with them about how i'm feeling and communicate with them more clearly. i will let you all know what they say in the next month or so.

i always wish i had a beta capsule...

TShaw
Posts: 1
Joined: Feb 2004

Your advice and observations really hit home for this guy that went through treatment in 75 & 76. That analogy comment about stone age spears and smart bombs was downright poetic. Unfortunately for those of us that were treated in the 60s & 70s it was an accurate comparison. You clearly realise that bad habits, shitty attitudes and poor health choices are the real things we should fear as cancer survivors. I know this to be true because I learned it the hard way.
Thanks for the sagely advice.

TShaw

karieallen
Posts: 23
Joined: May 2002

hey, give yourself a break....you've been through a lot in the last months...

I certainly went through a very down 6-8 months following my treatment even though I "skated" through treatment (4 months of ABVD, one month of radiation, I never got sick, and I didn't loose all of my hair)...

the after treatment period was much harder to me than the during treatment part. During treatment I was SOO focused on getting well, and being as well as I could during the process, that I didn't even think about any other outcome than "health"...after treatment was very difficult for me... I changed dramatically, and I looked around my life and I realized I didn't fit into it... it was easy to confuse "tired" and depressed... and I wanted to change everything...

I really encourage you to allow yourself the time to feel your feelings, and to take in the whole experience....and some professional guidance can be very helpful to move through this period..

and I agree that focusing on activities that you enjoy even little ones really elevate dark moods... and you feel up to it...think of a few things that you are really looking forward to: like fall, or the beginning of football or ?...
and then as your mood lifts, you can even set more goals...

and for your questions... it is totally natural... and yet I choose to focus on my health...and as a side note... me at 45 having not been in shape for many years, trained for and successfully rode my bike 150 miles in 2 days for a MS fund raiser.. so as far as long-term effects of treatment, I'd have to say, not an issue.

you can create whatever life after this experience that you want. I have no doubt about that.

anyway I'd say that I experienced similar to what you are going through...

mhagg
Posts: 2
Joined: Oct 2003

As I was reading your message, I thought it was about me. I was diagnosed 5 years age this week, and I am feeling the same way you do.

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

Hello Ultraman. What you are describing is a situation experienced by many survivors. I think that generally all of this catches many by surprise seeing that they are so into dealing with the life and death decisions of treatments and prognosis along the way. When treatments are over and they have time to think things like depression and some of hte other things you mentioned start to creep in. If there is a recurrance then add to that all the emotional issues that brings to the table on top of everything else.

Lately I have been really thinking alot about depression and moodiness of cancer survivors through treatment and afterwards and more and more I am starting to think that it's not just psychological but actual changes that take place in the body makeup due to radiation/chemo. I mean think about it. We are bombarded with radiation, in your case for a whole month, and technicians are scrambling to get out of the room and away from what is coming straight at us. Why? Damage. Same thing with chemo. These treatments are harsh and have many side effects in many cases and sometimes I just don't think the body survives it all in many ways. I mean it can get better over time but in some cases I think that emotional issues that were once thought to be solely psychological I feel can well be pysiological too, have caused real changes in our makeup so that we see it as being more moody and irritable and angry.

I know that during my treatments years ago there were times when I would get so angry and lash out and then think 'where the heck did that come from?'. I would chalk it up to stress and oh ya there was stress too but more and more even stress has been linked to causing real physiological changes in a person's makeup so now I think you might see where changes might well be happening that we are unaware of too. On top of that just the normal dealing with our own mortality on it's own can lead us to depression and of course everyone deals with all of this in their own way and at their own speed.

Something in what you wrote made me think that maybe you initially were sort of in denial too about your situation. Being 'level headed' really has not a heck of alot to do with being told you have cancer, it's about survival and that can bring on new feelings that you have never experienced before. You go through life with regular challenges and take them on in your own way and then WHAM you are hit with your own mortality - that can change a person right there.

Don't be hard on yourself, what you are talking about is pretty normal, the fatigue is a very common side effect of treatments, even years later.

My suggestion to you is that you talk with someone who deals with cancer patients and survivors in a professional sense, just to touch base as to where you are in the whole process and if you are stuck in any of the common stages that all of us will go through like grief, anger, why me, stuff like that. Also I would even before the counsellor talk with your own family doctor about your depression. Depression is an issue that can get out of hand really fast and the fact that you are drinking more is an indication that you aren't handling things in a healthy way. So first and soon I would get to you family doctor about the depression. Depression can be handled but if ignored - well you get the drift.

Many people have a hard time asking for help and I get that, I was the same in the beginning. But why? Why make an already hard situation harder by not reaching out - trust me you will be glad you did when you make that contact with your doc and with a good counsellor. Seek out a referral from your doctor for a good counsellor who deals with cancer survivors/patients - don't just choose someone from the yellow pages.

I check in with a counsellor now and again even after 24 years of dealing with all of this. Over the years we tend to go through different stages and if recurrances happen all the more reason to seek support. You will find this site very helpful as well as the people on these boards understand you because we have all been there.

All the best and remember, you are not alone.

Blessings,

Bluerose

CountryGal7557
Posts: 164
Joined: Feb 2011

this is amazing to me that a post from July 2003 appears 7 years later and it's the same feelings, struggles and advise that applies today.

Thank you BlueRose for responding and giving great advise. We need people like you that are a 24 year survivor to keep in touch. You give us hope and support that we can't possibly get anywhere else. Finding a local support group that understands and willing to listen and give us hope and encouragement, is really almost impossible.
so thank you!
Janelle

bluerose's picture
bluerose
Posts: 1112
Joined: Jul 2009

If so then my chemobrain has gone to a whole new level. lol. Sheeesh.

However, the feelings and experiences don't change not just for me to share but for all survivors - in one way or another. Of course we are all different but there are ripples of common issues we all struggle with and that's why sites like this can be so helpful and validating to survivors - no one can understand them like those who have walked a mile in their shoes as well.

If we can't share out experiences to help others then the way I look at it is 'what then was the whole point?'. I am just like anyone else on here Janelle, we all share these experiences and it's just so wonderful to have a place to come and hear the sameness of it all underneath so we don't feel so alone, and again, validated.

All the best to you Janelle and thank you for the kind words.

Blessings,
Bluerose

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