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I am terribly numb, broken, and feel alone. I long for friends

Naajaa
Posts: 5
Joined: Jul 2013

I posted this in the 'Young Survivors' forum as well, but I wasn't sure where it would best be placed. I hope this is alright...I would just really like a response :(


Hello,

I'd like to give just a little background on myself before I go into detail on my subject. I was diagnosed with testicular cancer when I was 18 and just about to graduate from high school. I had surgery to remove the testicle that was effected, and my oncologist recommended that I get a few short cycles of chemo to ensure that I was clear. However, I was under a lot of pressure from my family to try to go a hollistic route instead. That ended up being a horrible mistake that I will forever regret. That was in 2008, and 3 years later - all the while doing this hollistic approach that involved me entirely changing my lifestyle and taking between 40-70 supplements a day, and having an extremely strict diet - I ended up going to the emergency room due to severe pain from what we discovered were tumors that had spread to my liver, hip and spine. It was so bad that initially the hospital had determined that I might not survive for much longer. That lead into me getting inpatient and outpatient chemo all through 2011, and into 2012 when I got my final surgery in early 2012. I have also had radiation therapy, and 3 surgeries total. I can't even begin to describe the regret for that decision in 2008...

Fast forward to today (July 21 2013). I'm nearly 24 and while my cancer is gone, I am personally degrading emotionally. I feel like I've been losing myself for this entire year, and it's only getting worse with every day. I have been debating going back to my psychiatrist who I visted a few times to cope with things after my last surgery, but I really feel like it won't do me any good. There are so many things going wrong that it's overwhelming. I'm losing interest in things I used to love, I'm failing to connect with old friends, and I'm struggling to feel much of anything anymore. I'm having a hard time caring about anything - even things that should make me upset, angry, or demand a response that I remain silent on.

I'm normally a very strong willed person, but lately I am just flat out defeated; I'm shutting myself away from my family, and none of my friends really understand - not even my girlfriend. I talk to her about my troubles quite a lot, but she seems to deny that there are any problems or that this is just what I have to live with. She is there for me, but there is a gross misunderstanding and I don't know why she isn't seeing my pain. Lately I've felt so bad because I feel like I'm distancing from her as I've been seeking out new friends online who will understand my problems and offer me a shoulder to lean on.

When I was visiting my psychiatrist, we kept going on and on about how I protected my family from the things I was going through; I pretended it wasn't bothering me. I was a rock for them, while they fell apart around me. Now, I feel like I can't support myself anymore. I feel so alone, and for some reason I'm seeking out solitude. I have always enjoyed being alone or having very very few friends that I held dear, but lately it just feels like I am alone and those close friends are all gone. They don't understand what I feel - and really, I don't know if I do either. I realize it might sound strange, but I guess the best way I can describe it is I'm really looking for a personal closeness, despite being such a solitary person. I'm looking for understanding, and I have truly been so desperate for it lately.

I keep taking these psychological tests online, and they all suggest that I've got antisocial, OCD, and schizoid (not schizophrenic) tendencies. I don't know what is wrong with me, but I have not felt the same as the "old me" since after all of my treatments. Something is different, and it's just getting worse :(

I would really appreciate to hear any kind of response...I'm sorry my post was so long, but I have had so much bottling up and nowhere to vent it :(

Thanks

grandmafay's picture
grandmafay
Posts: 1613
Joined: Aug 2009

Run, don't walk to make an appointment with your psychiatrist. Then you can sort out your feelings and actions in a safe environment. Understandably, you are dealing with a lot of emotional as well as medical problems. Don't try to work through these emotions on your own. You may need meds to help you as well. it sounds like you do have people who want to be there for you. You are right that they can't know how you are feeling because they have not experienced your cancer fight from your,side of the equation. That doesn't mean that they aren't hurting for you and want to help. Don't shut them out. Get the professional help you need and find new ways to connect to them. You have gone through a lot in your young life. You can get through this, too. Hang in there. My thoughts are with you. Take care, Fay

Ladylacy
Posts: 481
Joined: Apr 2012

You need to talk with your psychiatrist asap and if you don't feel he is helping you find another one.  Cancer is a beast and treatment causes problems too.  You need to be strong only for yourself, no one else.  They don't know what you have been thru and are going thru.  Stop taking the tests on line and trying to diagnose yourself.  These are only tests and need to be read by someone qualified in the field.  You need to worry only about yourself right now and getting the help you need, not what your family or girlfriend needs.  You have been thru a lot and that shows you are a strong person.  Help yourself and stop worrying about others and trying to protect them.  

 

Wishing you the best.

pegalina
Posts: 42
Joined: May 2013

ladylacy, you know what u r talking about..my name is Peggy was diagnosed with stage 3 cancer a few yrs ago..what cancer did u have?

Noellesmom
Posts: 1302
Joined: Aug 2010

Because it has been a long journey!

I agree with the other comments: go to see your psychiatrist.  Also, if your psychiatrist does not engage in talk therapy, you need to find one who does or a separate psychologist/therapist for this purpose.

There's a kind of arrested development when a teenager goes through what you did, Naajaa.  While you seem to have a good handle on things, even the fact you aren't progressing right now, you need to remember there were experiences and exposures you may have missed out on that are necessary to "put the pieces" together when leaving childhood and entering maturity.  Just because you are mature in some areas doesn't mean you are in others and you need to get help with this.

You are NOT the "old me" as you say.  Cancer patients, and their loved ones, have to recognize there is a "new normal" and that is not always easy.

I really commend you for seeking help and knowing there is a better way than the one you are going right now.

Come back and let us know how are things are going, Naajaa.  With your inteliigence, personal insight and desire for a better life for yourself, you will get there - remember, every type of healing takes time.  Emotional healing takes the longest and it can leave scars.  What you need is help with moving forward.

Sending lots of hugs your way.

Naajaa
Posts: 5
Joined: Jul 2013

I would like to thank everyone for replying to me with such kind words. It truly means a lot to me, and just reading what you've said gives me a sense of hope. That's especially true when you've mentioned how cancer and its treatments can change a person, because I feel like that is the primary concern I've got that ceaselessly weighs on my mind. I have read about it, but it's nice to have acknowledgement from you; I really appreciate it.

I agree with your suggestions to go back to my psychiatrist, and I am planning on making an appointment along with a blood test that I've got to get done soon. I'm a little afraid..I feel bad that I have not gone to see him in so long, and I've degraded severely since then. I don't think my parents like the fact that I have to go to a psychiatrist in all honesty, and I don't like them knowing about it either. I despise showing any kind of "weakness" to them - I don't know why. I don't know if they perceive it that way, but I can't help but feel that they do. 

I don't know why they don't appear to like the fact that I need to talk to somebody, but they have a problem with a lot of things...they often suggest that their particular religious faith is all that I need to fix my problems, and I do not share their beliefs. I said in my first post how much I regretted doing that holistic treatment, but perhaps an even bigger regret I have is that I told my parents I do not subscribe to their beliefs. That just lead to them thrusting their beliefs on me further and all throughout my treatment, which lead to a lot of feelings of resentment. I have ended up with severe neuropathy because of the particular platinum based chemo that I've had, and it's extremely painful; my parents have a problem with the pain medication for that even..

I wish I could just be able to get away from them,  but now I depend on them. I can't drive because of my neuropathy, and my anxiety, depression and pain from my nerve damage and arthritis from radiation keep me from doing much of anything. My life is such a mess, and if I'm honest I have a hard time seeing how a psychiatrist could do much to help these things..but I know I need to go. 

Having people on here to talk to and offer support means so much, and you're absolutely right about my family not understanding. They 100% do not seem to get it, and are putting additional stress on me. I have become so bitter and jaded through all of this. I find myself not caring about things I used to, and having a lot less sympathy for people to the point at which I feel like I have a malicious personality disorder that makes me uncaring and hurtful towards people. I think this is a main reason why I want to see a psychiatrist again - it's scary. 

camul's picture
camul
Posts: 2072
Joined: Dec 2010

No one will ever understand what you have been through and the after effects, unless they have personally been on the same journey.  Your parents are probably reacting out of both fear of losing you and religious beliefs. 

Another suggestion is to possibly find a support group in your area.  I know how alone I felt.  I finally found a community support group through the Cancer Wellness House.  It is a non-profit and offer free counseling, accupuncture, support groups (there is one for young adults).  I drove there 3x for the support group before I finally went in.  It was the best thing ever, to be with about 12 other people who actually understood what I wa feeling.  Ours also has a young adults support group.  I have talked to some of them and they said it is wonderful.  Best part is most major cities in the US have this and the services are free!

Going through a cancer diagnosis and treatment is like fighting our own personal war and just because the treatment is over, does not mean we will automatically go back to 'normal'.  However, I found that it is easier to be around my friends and family since getting help.  Once I was validated in my feelings through my support group, I realized that I needed my family and friends in other ways! 

There is an article in the new Cure Magazine about cancer and depression.  Over 30% of all cancer patients will suffer from depression that requires intervention, either during or after treatment.  In the next year or so, it will be required that all cancer patients will be screened for depression as part of standard treatment!  You can probably get to the article online, just google Cure Magazine.

I commend you for reaching out for help and wish you only the best.

Camul

Naajaa
Posts: 5
Joined: Jul 2013

Thank you for the kind words, Camul.  I think a support group would be nice,  because I would love to have some friends with similar experiences - especially ones my age. Are groups like that something that everybody has got to speak in right away? I am incredibly introverted, and while I want to meet people, I have a hard time making real, powerful friendships. When I do though, the person is very special to me. I guess I'm trying to say that I don't exactly hit it off with most people, and I would be rather shy in introducing myself to a group that I'm worried I might not get along with.

The prospect of meeting people with similar feelings and experiences to me makes me feel hopeful. 

Mary N.
Posts: 84
Joined: Jun 2013

Naajaa, As I was reading the posts for the last month or so I think I detected a tad of hopefulness coming through with this last post.  I think a group is a wonderful thing because they do understand how differently we have to deal with life after we have had to deal with death.  There are many kind of professionals that can be of help.  A psychiatrist is great because he can prescribe meds if you need them, but there are also people who talk and are very helpful.  Psychologists, MFTs, LSW's are all trained and can be of help.  Find someone you met with who seems to understand you.

 

I'm sorry that your family is not as much support for you as you would like them to be.  They are probably doing the best they can and I would imagine that they are also very frightened.  You are your own person and as you grow, your beliefs may be different from theirs.  This is hard for some of us to accept.  I hope that you can forgive them and know that they want the best for you.  However, what they want may not be the best for you and so you will need to find friends, or a group, who do understand. Reaching out on a board like this is a good start.  Hope is a necessary thing for us to have if we are going to beat it.  If I could place it on a plater for you to eat I would but I can't.  You have to find it and hold on to it.  I find it helpful to look for positive things, or beautiful things, or nature or, or but we all need to know that we need others and we need hope.  Blessings.

camul's picture
camul
Posts: 2072
Joined: Dec 2010

I am pretty oprn about my cancer with friends and family, as I feel they can all learn from it. But I am not one who discussed it with co-workers, facebook. etc, and other than a couple of my brothers and sisters, and a few friends, even if I talked about tue cancer, I wouldnt talk about my 'feelings ' as to what I was going through. After a while, by staying closed off I was also isolating myself emotionally and was really getting lonely. I introduced myself the first night and felt my waay, a week later when I went, I was more comfortable and opened up more. When I left, I felt such a sense of relief. As this nasty beast keeps progressing, I am finding that I need to talk about how I feel, and people ask questions. They are all going through some kind of cancer and one of my biggest fears was that being stage iv, that if I talked about my fears and the lonliness that it would scare some of the others in the group. I inquired with another support group when I first was diagnosed with the mets and the facilitator said it would be too hard for the others in the group bcuz having their cancer return was their greatest fear.
But the group that I am in has been amazing. Anyone who has ever had cancer will be fearful of a recurrance, but that is the reality of cancer. This group welcomed me with open arms. We welcome everyone. There were so many young adults and when they decided to break off, it encouraged even more young people with cancer to join them.
If the young adults do not have a meeting one week and some still show up, they come in with us and they are welcome anyti e.
I am so happy that I joined, and my boys, 27 & 29 are glad I did also. I do

pegalina
Posts: 42
Joined: May 2013

Dear Camul..my name is Peggy..was diagnosed 5 yrs ago with stage 3 breast cancer..also tested positive for the Brac 1 gene..so @ 42 yrs old had a double mastectomy & complete hysterectomy..I'm 48 now..my husband passed away 1 month ago...massive heart attack..he just turned 50..u siad u r stage 4..breast cancer?...is it anywhere else?..dont want to be nosy..but I'm a fighter of cancer..I was given 56% to live..I asked my cancer dr..whats the best I could make..he said"only 3% make it to 90% survival rate..I told him..I will be 1 of them..I played sports my whole life..got a full ride to Loyola in Chgo for volleyball...was taught never give in..never give up..I'm still here..will never be a survivor or in remission cuz of the Brac1 gene..its a mutated gene that cannot be controlled..Now..lets get real...cancer sux..but there are 2 ways to deal..(I'm not talkin the stages that your family & friends r talkin about)..lol..the only 1 or 2 people who will truly understand you..well I'm 1 of them...family is great..BUT THEY DONT GET IT..unless they experienced it..dont mean to be mean..but its the truth..My father died when I was 19..totally screwed me up..very close with him..talked..he really cared..I was left with my mother..cold..heartless(my twin brothers r 18 yrs older than me..me sister 11 1/2 yrs older..I was a mistake..so explain to me..my father who loved me..died..& I was left with my mother who..) lets put it this way..I played v-ball in 7th & 8th grade..my mom came to 1 game..I had 3 games a week for 3 months..now Highschool..they came to 2 games in 4 yrs..I'm not lookin for sympathy..NO..I have 2 sons 15 & 17....I'm there for them no matter what..lets get back on track with you...I wanted to end it all @ 19..when my dad died...that was it..had it planned..I was thinkin car in the garage..there was no way I would cut myself..Im hoping u r still reading this..1st what meds r u on?..listen to me meds screw u up..no matter the dosage..2nd..I dont know where u live..but dont go(I was gonna say dont do anything stupid..too parental)..Im 48 goin on 25..I wrote this long e-mail so u would stop & think.r u still with me..well..now I will make you laugh..I went last dec for my driver renewal..they asked male or female?..I said"neither".cuz I have no boobs or uterus..I said"I'm just a person"..they didnt find it funny...please write back

pegalina
Posts: 42
Joined: May 2013

Hi you dont know me but I can get you possibly back to yourself.1st let me tell you about me..5 yrs ago I was diagnosed with stage 3 breast cancer..was given 1 yr to live..I'm still here..1 month ago my husband passed away..50 yrs old..he was umpiring a baseball game..collapsed on the field..they couldnt bring him back..sooo at 42 I had breast cancer..@ 48.Im a widow..have 2 sons..15 & 17..U R 24 yrs old..I'm not forgetting your cancer..however..U HAVE GOT TO PUT IT IN THE PAST..or u will never move on..take it from an older..but young at heart woman..U will never forget..BUT I have the amazing true life situation that actually happenend to my uncle..he had your cancer 50 yrs ago..he was given last rites..and he came back from radiation..cancer free..lived 25 1/2 more yrs...I just want you to know..I care what happens to you..yea I dont know you..but you went thru cancer..I know that like nobody does..I have the brac 1 gene..so I had a double mastectomy & complete hysterectomy in 1 surgery..7 1/2 hrs..I went thru chemo before surgery..then radiation for 6 weeks after surgery..u listen to me..I havent been the same since chemo..chemo is poison injected into a body..I havent been..ok..since then..but you are younger..your immune system is stronger than mine..please talk to me..I will tell you the truth(which the drs never do)

camelia3187's picture
camelia3187
Posts: 2
Joined: Aug 2013

Its crazy how much I can relate to how you're feeling Naajaa. Alittle about me, in 2010 i was diagnoised with AML, i went through 3 months of chemo and had a stem cell transplant. It was extremely hard going through that whole process. Before I was always the strong one who hid my feelings for the sake of others. Always putting myself last, and making sure everyone around me was ok. And now at 26 im in complete remission, and although I should be happy that im healthy (i really am), im struggling more than ever. I look in the mirror and don't know the person looking back at me anymore. I miss the girl i was before i got sick. Always so optimistic, motivated and happy. I was an outgoing person and enjoyed hanging out with friends and family. Now in any social setting i feel uncomfortable. I have completely detached myself from everyone. I find comfort being alone but at the same time i hate it. 

My boyfriend tries to be there and lets me vent, but he doesnt really understand what im going through... No one does, and its very frustrating. I crave to have someone who can relate 100%. Every day is a blur. I feel like a shell of a person. My best friend called me yesterday; her uncle died. He too had the same cancer as me and was even getting treatment at the same time as me. I cried a lot. I cried for her and her family. Mostly I cried because here I am not living my life to the fulliest, not fully appreciating life and this man died, wanting to live. Im stuck and I'm unsure of how to get out this rut. 

Sorry i dont have any answers for you, but at least you now know you're not alone.

 

camelia

seanman's picture
seanman
Posts: 7
Joined: Aug 2013

Hi Camelia, you don;t need to know how to get out of the rut, just believe that you will, reaching out and sharing your story is what its about.. Thank You...

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Hello. I can certainly understand the wave of emotions that you are feeling. Although I may not have gone through it myself, I can really empathize with you and know everything you are feeling is real.

There are a lot of posts on here and to be honest, I sort of skimmed through all of them because that is a lot of reading for me and I am not feeling the best right now.

I see people have discussed getting in touch with your psychiatrist and finding a support group. Do you have a counselor? If not, I suggest finding one that has dealth and/or deals with cancer patients. I think that is a very critical criteria for a counselor for you.

When I was first diagnosed in 2010 I was seeing a great counsoler, only he admitted that he can't really help with the cancer issues. Although I was disappointed, I applaud him for being honest and saying that is an area he is not familiar with. This is why I say to find a counselor that has experience with cancer patients.

I am not trying to be a negative nanny and try to break up with you and your girlfriend, but if she is not that supportive of you now and your cancer pain and issues and doesn't seem to change, is this someone you want in your life long term? Sounds like you may be dealing with these cancer issues for a long time. I just suggest you think about it. 

In my opinion,diagnosing yourself online isn't the best thing. Let the doctor's and counselor give you the tests if you need them. I have not tried it myself, but I would be hesitant to. The pyschiatrist and a good counselor will have training in these aspects and be better able to diagnose you more accurately than an online test I would think.

Anyway, you have a lot on your plate and I just wanted to give you things to think about.

I truly wish you the best through this long, hard road to some sort of recovery and a new better life than what you are living in now.

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