New to the group, hoping to understand my post treatment emotions...
Hi, I am 3 months out from surgery and radiation for mucosal melanoma in my nose. The orginal diagosis and prognosis were bad, the treatment was brutal but not as bad as other people I saw and got to know during the 30 radiation treatments. I am recovering and am having more trouble with depression and 'survivor's guilt' and how to answer people who are trying to be positive with 'you look great' and 'it is wonderful that you are finished'. During the treatment I had a lot of support from family and friends and the people at Hopkins. My scans were clean, it was not in the lymph node they took during surgery and I will just be checked every 4 or 5 months with scans to make sure it doesn't show up elsewhere.
I tend to be someone who doesn't like to 'whine' so when I do say anything to friends or family about the side effects that I am still dealing with I immediately say something like 'I am just grateful that I am alive and will stop whining now'. They are usually very supportive so this is mostly my issue. I don't understand why my emotional state is worse now than while I was going through treatment (except at the beginning when I was told that with surgery I still had a 60% chance of dying).
I guess I am looking for people with whom I can share this bizarre PTSD/depression after getting through the treatment and surviving what sounded pretty unsurvivable at the beginning. I am even feeling guilty voicing this here when I read about so many others who have gone through/are going through so much worse...
Paula
Comments
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Not a zero-sum game
A zero-sum game is one where one person or team must win, and the other person or team must lose. Cancer survival is not a zero sum 'game.' That means your survival did not cause another person not to make it through, and your relatively short journey through treatments didn't cause someone else's journey to be longer or more difficult. The guilt you feel might be from the emotional, physical, and mental fatigue you experienced to get to this stage. Most cancer treatment programs now offer survivor support services, which is more than coping with the physical side effects from treatments. You might start there.
mike
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That Is Very A Good Answer And
Observation and support on Mike Metz's part, very well stated in a short reply. Wish I could do that. Well, Paula I too had what you are talking about. I don't think I had a lot of depression but definitely some. After all who can go through this brutal treatment without being depressed. Never experienced anything like this before in my life. It sort of humbles you. I think I am right on par with you on the survivor's guilt thinking that this person is more gentle and nicer and better in other ways than me and they deserved more to survive than me but I did and they didn't. Why? Well, I guess it was on my mind a bit but don't let it bring you down. In the end, trust God as it is in his hands for the deciding of all these things and is his plan. I agree we usually tough it out but I have found that this cancer stuff can be difficult and it is OK to complain, whine, express negative feelings or whatever you want to call them and you are not whining, you have just gone through some devastating treatment and have no reason not to feel this way and there is no reason to apologize for the way you feel. I am sure it is all on the patient's side, these feelings because our family and friends believe it are trying to be as supportive and helpful as they can be but many times just don't know exactly what to say or do. I think this just takes time after the treatment to work its way out, the mild depression, the guilt feelings, etc. If you think you are definitely overwhelmed with it check with your care team for some help. During treatment, you run into a lot of people in different stages and cancer in the waiting rooms and you see cases much worse than yours and some much less. You end up talking to these people while we wait for treatment and we bond as folks sharing something together so when someone you know is not doing as well it affects you also and can be upsetting. But don't worry, the same people are probably thinking of you wondering how you are doing. Accept the Blessing of your successful treatment and just thank God for his Blessings and settle back and enjoy life. Tell yourself I am not going to feel guilty anymore I am Blessed. You stated, " I don't understand why my emotional state is worse now than while I was going through treatment". I think part of that is we get our mindset in this warrior mode and are in this big battle to finish treatment and just dealing and struggling to get through each day and suddenly it is done, all the appointment all the struggle, etc and I think that affects us emotionally also. Your body and mind go through a lot with this treatment and it is easy to be on overload and underload and emotional ups and downs during and after for a while. so I don't know if all this helps you but I can say I felt just like you with depression and guilt feelings and what you are experiencing is not out of the normal. Keep busy and do not focus on it, I know this forum helped me immensely and I hope it will do the same for you-Wishing You The Best-Take Care-God Bless-Russ
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Thank you...Mikemetz said:Not a zero-sum game
A zero-sum game is one where one person or team must win, and the other person or team must lose. Cancer survival is not a zero sum 'game.' That means your survival did not cause another person not to make it through, and your relatively short journey through treatments didn't cause someone else's journey to be longer or more difficult. The guilt you feel might be from the emotional, physical, and mental fatigue you experienced to get to this stage. Most cancer treatment programs now offer survivor support services, which is more than coping with the physical side effects from treatments. You might start there.
mike
Thanks for the advice, I am going to check out what kind of support services they have. It never occurred to me that I would need support after it was over, but it makes sense.
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Your description really helps...wbcgaruss said:That Is Very A Good Answer And
Observation and support on Mike Metz's part, very well stated in a short reply. Wish I could do that. Well, Paula I too had what you are talking about. I don't think I had a lot of depression but definitely some. After all who can go through this brutal treatment without being depressed. Never experienced anything like this before in my life. It sort of humbles you. I think I am right on par with you on the survivor's guilt thinking that this person is more gentle and nicer and better in other ways than me and they deserved more to survive than me but I did and they didn't. Why? Well, I guess it was on my mind a bit but don't let it bring you down. In the end, trust God as it is in his hands for the deciding of all these things and is his plan. I agree we usually tough it out but I have found that this cancer stuff can be difficult and it is OK to complain, whine, express negative feelings or whatever you want to call them and you are not whining, you have just gone through some devastating treatment and have no reason not to feel this way and there is no reason to apologize for the way you feel. I am sure it is all on the patient's side, these feelings because our family and friends believe it are trying to be as supportive and helpful as they can be but many times just don't know exactly what to say or do. I think this just takes time after the treatment to work its way out, the mild depression, the guilt feelings, etc. If you think you are definitely overwhelmed with it check with your care team for some help. During treatment, you run into a lot of people in different stages and cancer in the waiting rooms and you see cases much worse than yours and some much less. You end up talking to these people while we wait for treatment and we bond as folks sharing something together so when someone you know is not doing as well it affects you also and can be upsetting. But don't worry, the same people are probably thinking of you wondering how you are doing. Accept the Blessing of your successful treatment and just thank God for his Blessings and settle back and enjoy life. Tell yourself I am not going to feel guilty anymore I am Blessed. You stated, " I don't understand why my emotional state is worse now than while I was going through treatment". I think part of that is we get our mindset in this warrior mode and are in this big battle to finish treatment and just dealing and struggling to get through each day and suddenly it is done, all the appointment all the struggle, etc and I think that affects us emotionally also. Your body and mind go through a lot with this treatment and it is easy to be on overload and underload and emotional ups and downs during and after for a while. so I don't know if all this helps you but I can say I felt just like you with depression and guilt feelings and what you are experiencing is not out of the normal. Keep busy and do not focus on it, I know this forum helped me immensely and I hope it will do the same for you-Wishing You The Best-Take Care-God Bless-Russ
I like your description of getting into warrior mode and in this big battle while going through treatment. I felt stronger, in a weird way, than I do now. Which also goes with what Mike said about the fatigue of going through it. Now that I am not in the middle of the battle I am physically and emotionally exhausted.
I am very glad I found this group!
Thanks,
Paula
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Paula
I felt similar for a stretch of time. My Dad committed suicide two months before I was diagnosed with throat cancer. Nobody really knows why he was a healthy 80 year old. During radiation when things got bad, I actually thought of doing the same until I remembered what it did to the rest of the family. Soon after my second battle with cancer (prostate) a secretary and a union official at the union hall I worked at both passed after their first battle six months apart. Two years later my throat cancer decided to do an encore in my right lung. After treatment I couldn’t stop thinking why did I survive three battles when so many lose the fight with one. I even stopped visiting this site as often as I was because of the horror stories. I kept thinking hell I am a Teamster Vice President and I’m suppose to be a tough guy. I was thinking people call me a survivor but I didn’t feel like one. I decided that it seemed cancer was somewhat in charge of my life and I need help to stop it. I went to counseling for over a year and I am glad I did because I found out it wasn’t just the cancer but also the side effects. I use to have a low voice like Barry White but now it is much higher pitched. At meetings with employers when they would start screaming about issues, I could always yell loader than they could. After throat cancer I just laughed at them. I learned to cope with having cancer, surviving, the side effects, and being told after lung cancer that I will never be cured. Life is too short to have f…..g cancer control it. If it comes back, I will just kick its f.....g butt again.
Enjoy the day…………I do………every one of them
StayPositiveStayStrong
Jeff
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Wow!Duggie88 said:Paula
I felt similar for a stretch of time. My Dad committed suicide two months before I was diagnosed with throat cancer. Nobody really knows why he was a healthy 80 year old. During radiation when things got bad, I actually thought of doing the same until I remembered what it did to the rest of the family. Soon after my second battle with cancer (prostate) a secretary and a union official at the union hall I worked at both passed after their first battle six months apart. Two years later my throat cancer decided to do an encore in my right lung. After treatment I couldn’t stop thinking why did I survive three battles when so many lose the fight with one. I even stopped visiting this site as often as I was because of the horror stories. I kept thinking hell I am a Teamster Vice President and I’m suppose to be a tough guy. I was thinking people call me a survivor but I didn’t feel like one. I decided that it seemed cancer was somewhat in charge of my life and I need help to stop it. I went to counseling for over a year and I am glad I did because I found out it wasn’t just the cancer but also the side effects. I use to have a low voice like Barry White but now it is much higher pitched. At meetings with employers when they would start screaming about issues, I could always yell loader than they could. After throat cancer I just laughed at them. I learned to cope with having cancer, surviving, the side effects, and being told after lung cancer that I will never be cured. Life is too short to have f…..g cancer control it. If it comes back, I will just kick its f.....g butt again.
Enjoy the day…………I do………every one of them
StayPositiveStayStrong
Jeff
Jeff,
You have been through so much and warriored through it all. I do believe that a positive attitude and just living my life helped me get through and will help me get through. I also understand taking a break from the site as just reading some of the things that other folks are going through still makes me feel like I should just appreciate where I am. My very strong, healthy, athletic step brother died of melanoma 14 years ago and I really believe that luck is the reason that I survived and he didn't. Luck because they've learned more since then. Luck because mine was caught earlier because I had to have a covid test after an exposure and the test itself caused massive bleeding in my nose which is how they found the tumor. By the time they found his it was in his lymph nodes and more - he fought hard but he died about 2 years after he was diagnosed. I asked him to watch out for me as I was going through it on a regular basis (makes me sound a little crazy, but it helped).
I don't dwell on it now, it just seems to hit me hard sometimes and I have to figure out how to deal with it. Maybe as some of the longer lasting side effects get better and I adjust to whatever sticks around as my new normal that will stop happening. And there is the knowledge that each time they do scans it could start all over again (as you know well). I have something amazing and joyous to look forward to and am focusing a lot on the fact that I will be around for it, which I didn't think I would - I am going to be a grandmother for the first time in September.
I appreciate the wisdom you've gained and the validation you give that the survivors guilt - which I know doesn't make sense in a rational way, your survival and my survival and not suffering as much as someone else does not cause them to suffer or pass away - is normal and will decrease. Along with the physical weakness and fatigue...I hope.
Thanks so much,
Paula
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My response
Thank you for sharing, Paula. As you know, each of our cancers, treatments, and recoveries are different regardless of their similariites. For my part, I have never had that guilt feeling .. except for in this room. I had been prepared for a horrible two weeks after treatment since alomst everyone seemed to have experienced their worse then .... but for me, I was up and at 'em within days of finsihing treatment. When it was all said and done, I did nto expereince many things that the others had .... not to diminish the struggles I DID experience, and in some small ways still do. (4.25 months post tx now)
But, for what it is worth ... you and others have mentioned friends and co workers and others that have died or had worse options. The single thing that kept my focus and helped me overcome the struggles was thinking of three people in my life. My sister, Dottie, who died in 2014 from lung cancer, and two very close friends, Steve, and Jenifer who died in 2019 and 2020, respectively from a cancer. It was not their deaths I thought about, but I thought of their day when they got their bad news. In each of their cases, they were basically told to get their affairs in order. In my case, I was told I had a 95% chance of full recovery.
So no matter how hard my treatment was, how painful post op was, how sad I became for myself, I kept thinking that Dot, Steve, and Jenifer would have given an ARM to have had the opportunity to go through what I went through. To them it would have been an opportunity, to me it was a hurdle and struggle. So for me, it was honoring their lives and the contributions they made to mine; the strength I drew from each of thier experiences.I carry that with me still today. I never spend a minute getting upset at what I had to deal with because I know those three special people would have loved to rather than accept the only option provided to them.
I don't know if this wil be helpful to you or not, and I am by no means trying to tell you what to do or how to view your world post tx. I am only explaining how that perspective helped and is still helping me through this ordeal. As strange as it may seem to say, I was and am, one of the lucky ones.
Good luck to you in your recovery ... go get strong and fast and healthy again and enjoy the gifts you have that so many others wil never again experience ... we owe it to them, both living and passed.
-Beagledad AKA Don
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Paula
I remember a time when life seemed to be getting me down, mentally, post-tx. I recognized it for what it is: coming off all the activity during tx and living with early side-effects, then things got better. Hey, I'm alive, and every day back then was a really good day, all things considered. Most all of us have taken a hit on Quality of Life, and "whining" serves no purpose/is a word to describe self-pity. Sure, I kept my Folks informed on how I was doing, especially my Dad after I became Feeding Tube-dependent 9 years, post-tx, but I never griped about what life had dealt me. Others have suffered so much more with the likes of ALS, MS, fire victims, paralysis, etc. Could be you are just adjusting to the new normal of life, post-tx; and, if you think it would help to talk to a Counselor, then do so. Said will probably tell you to focus on the Positive. As for family members and friends, let them know this is your new normal/reality, and you are happy to be alive. That's life- get used to it.
As for any guilt feelings- that is nonsense. While I was recovering in 2009 (my last Rad session was at the end of the first week in April), my only other sibling, Sue, was diagnosed with lung and given 6 months. She ended-up only having 4-1/2, dying in October of 2009. Her C had nothing to do with me. Same goes with a 1st Cousin who later died of Esophageal.
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Paula,
You're a survivor, and you have no reason to feel anything else but joy in living ... and maybe an urge to help others get through the process!
You certainly sound like a hardy person with a great attitude. You're exactly who others going through this are looking for, to advise them through their experience.
Congratulations on your excellent response to treatment, and I wish you the best possible continued recovery!
MG
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Thank youmotorcycleguy said:Paula,
You're a survivor, and you have no reason to feel anything else but joy in living ... and maybe an urge to help others get through the process!
You certainly sound like a hardy person with a great attitude. You're exactly who others going through this are looking for, to advise them through their experience.
Congratulations on your excellent response to treatment, and I wish you the best possible continued recovery!
MG
MG,
I think the helping others get through is something that really would be good for me (and I hope for them). As for enjoying life, I truly am focusing on the future especially with a grand child coming and, maybe, being able to travel again. I think that is why I've been so surprised by my own pot tx reaction when it hits me. I was really looking for some kind of help understanding, from some who've been through it, this weird phenomenon.
I appreciate all of the replies and perspectives! I know I will adjust to whatever my new normal is - I have done it with some other bizarre medical and life surprises so I guess just accepting that the unexpected feelings are part of this surprise and pushing through that too is part of getting there.
Thanks,
Paula
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Paula,Mamabear_2 said:Thank you
MG,
I think the helping others get through is something that really would be good for me (and I hope for them). As for enjoying life, I truly am focusing on the future especially with a grand child coming and, maybe, being able to travel again. I think that is why I've been so surprised by my own pot tx reaction when it hits me. I was really looking for some kind of help understanding, from some who've been through it, this weird phenomenon.
I appreciate all of the replies and perspectives! I know I will adjust to whatever my new normal is - I have done it with some other bizarre medical and life surprises so I guess just accepting that the unexpected feelings are part of this surprise and pushing through that too is part of getting there.
Thanks,
Paula
I personally enjoy helping others on this forum. It brings me joy, to suggest a different way of looking at their situation, that gives them some comfort.
GRANDCHILD - CONGRATULATIONS!! I have 2 Grandsons, and I will tell you now - there is NO bigger joy in life than those little ones!!
The great thing about Cancer, is that it changes one's perspective on life. Everyone seems to know that life has an expiration date. But, Cancer survivors have stared right down the barrel at the end - and it seems like the time you have left is like a gift!
As I say, you strike me as exactly the kind of person the scared individuals who are just hearing the terrifying "C" word need on here. I hope to read your advice to them, often!
Again - CONGRATULATIONS, GRANDMA!!
MG
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Paula
Hi Paula, it's OK think Weall go through a form of survivor quilt mine is more I wish I could have died. I'm suffering major side effects 5 yrs later Cancer free & clear.. But as you say ours is a handicap form of trying to get by day to day & real support hard since nobody can see your effects from a brutal treatmenuts. Lose an arm or leg is visible & more understanding but ours is our own to suffer alone not in OUR body. Just know We understand herewith horrible side effects that never end & can't be cured. I developed colitis from 1 drug & life long sodium low. What I'm suppose to carry around a CT & blood test results? So know I'm glad you survived with what little you got from this toxic treatment. Try positivity instead of guilt. Your a lucky one so many are not. So go live life for Us that can't & more a corpse & cant. Please love living & don't feel guilty. Nobody here on this wonderful forum with such caring people tho they suffer. If you can be living a more quality life please do so & enjoy. Do it for Us that can't. One less just getting by please no quilt everyone here should live a real life. Throat, nose any head & neck are in the worse shape than all the others friend & family get surgery, cut it out done. NO. Treatment. Their out enjoying life to fullest. If you get really bad overdosing Drs your screwed with our Cancers like Me. Have to suffer in sipence, don't want pity had gut walk way so I also blame Myself. Sounds like you had good group be HAPPY! I was in beginning when doing well very positive but 6 months later bam changed into nightmare. It IS what it IS,
hugs, Lisa
hugs, Lisa
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Paula
Depression is very real.
My Primary care, said when I finally went and told her how bad I felt, that she had expected it, and she was suprised I hadn't crashed sooner.
Its a lot of things, First you have the aftermath of everything, your fight or flight reaction fades, leaving you sad. Then you have all the people who say "I am so sorry" I always wanted to say WHY?? Why are you sorry, you didn't give me this parasite, you didn't make me fight for my life.. WHY? Thats why I tell people, don't say sorry, say I am here, and, what can I do?
I'm still not the "happy" person I once was. On the outside, yes, on the inside, Im still the person who cried because she thought her puppy hated her (as if) Zoloft helps a little, but I have a ways to go
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