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Mom needs advice

pettherapy
Posts: 1
Joined: May 2015

I probably should have put this in the caregiver thread but I feel like I need advice that is more specific. So if I am in the wrong place, please let me know. On his 18th birthday my son was diagnosed with stage III testicular cancer. They were positive in attitude about the treatment and his recovering fully. However, as all you know, it is still quite a shock. My son went through such and enormous amount of emotional changes (angry, sad, depressed, wondering why deseving of it, does God hate him, etc). Our family all understood. In fact, I think he took it out the worst on me during treatments. I felt pretty hurt but always walked away to be sad and understood that I would have no idea what he was going through or how he felt. We continued to be there for him regardless (same as we have his whole life) At the end of the first round of treatments, they scanned again and believed that it had spread to his brain. He went into a bigger depression, however, we did find out that it had not spread that far. He did not handle treatments well and was very sick during them. It was his senior year and he was missing all of his sports that he loved so much along with his other activities. The school worked well with us to keep him caught up for graduation but that doesn't change the fact that he wasn't there for a lot of it. He is a more quiet type of guy, meaning he doesn't like a lot of attention brought to him. During this, the town and school got so behind him that it blew into a major fundraising and media blitz. The family knows that they all had good intentions but it did upset him more to have that type of attention brought to him. He graduated and the next fall started college. He had trouble there because he was tired and couldn't focus. He also has had trouble getting his body back in the shape that it was before and that upsets him. He took last semester off and got a job. He is also a volunteer firefighter. He had a scan last October but they couldn't completely clear him because there was a worrysome area in lymph nodes in chest. They told us that the best thing to do is wait and watch, but that they feel they got it all. Of course, without a full clean scan it won't make him rest easier or even any of us. It has been just a year now since his last treatment and his health just doesn't seem to be improving. We have taken him to doctors who tell us to just let him build back up naturally and that everyone is different.

So (sorry for the long post, I felt that it might help in getting advice), my dilemma is, can it take that long for him to feel better after treatments or should I be looking for something else. He goes to the gym every day but just can't get built back up and he is so tired all the time. His girlfriend and another of his friends has left him because they feel he has had enough time to recover and that he should be getting out more. I have had other parents tell me that I am a bad mother for not forcing him to get out more. One, he is an adult but I will always help if he needs it. Two, I haven't been through what he has (I had a hard enough time watching it so can't imagine) so how could I possibly tell him he is okay to push all limits. On the other hand, if he should be fully recovered and be feeling good after a year since treatments, I feel that I need to get to the bottom of why he feels so horrible. I feel with his volunteering and working, he is being productive, if he is too tired for "partying" than it should be his choice but I want him to feel healthy too.

Any advice or help would be much appreciated. Thank you in advance.

Hrdnipz
Posts: 7
Joined: May 2015

Hey so I don't know if your going to see a personal message or not considering this is my first time on here but here we go...

 

So i can only really give you my perspective because im not interly sure on what exactly happened to your son but honestly you remind me of my mother which makes me sad because of the burden this has to be putting on you... 

 

So im 25 now but when i was 19 i started to get this intense pain in the lower middle section of my back that only got worse as the weeks went on... went to doctor after doctor to emergency to doctor... all of which told me that i either strained my muscles or i was only trying to get pain killers long story short no one actully belived me until it got to the point where i couldnt stand up straight but eventully someone started giving me scans and what not turned out i had a 7 pound tumor in my abdomine suppresing my kidneys venna cava stomac.. pretty much everything under my heart,,, so ov couse this was a pretty huge shock to every one not so much me becaue i knew i was dying i just wasnt exactly sure from what...

 

it was testicular cancer and i went through the long year of stage 4 to 5 chemo which took alot out of me and then 2 surgeys one of which was 17 hours... now i went from a really fit in the gym 5 times a week social popular 19 year old who never cared about pain ( physical nor mental pretty much a day in his life...) there was this one time i feel off a parkade at 15 shattered my ankle and had to have re-constructive surgery to next moirning to put it right but i went to sleep on it the night befor) lol super man am i right.... lol just kidding... i hate testicular cancer so all i got left is my dry humor... maby wrong time for that joke...

 

but any way... im 25 now and you probably dont want to hear this but the person i was is gone... i lost my left tesitcal at 19... im not sure if your son had the same surgerys but i lost that muscle and a rib... i woke up with scars over my entire upper body and this was after i let them pump me with posions for a year ontop of no one beliveing me in the first place... so i dont even know who i am anymore.. and i know your son should feel happy hes alive but maby he misses the person he was and doesnt understand that the shell is just a shell... he is still in there even though he might have been pushed down to shield him self... 

YOU SHOULD DEFINITLY GO GET HIS TESTOSRONE LEVEL CHECKED. AND SOMEONE HE CAN TALK TO.

Because your son and my self maby have been more mentally damaged by what happened to us then maby physically and i know that sounds fucked up and prolbably doesnt happen to most people... but the younger you are the worse it is... everything you knew befor you got sick is gone... and i know this is hard for you to read just like your message was hard for me to read becsaue i instanyl thought of my mother and how im a piece of **** and dealing with the exact same thing im doing to my mom

but im honestly not in a place where i can love my self i still feel like im traped in a strangers body and im hoping i wake up and im the same person i was 5 years ago.... think of it this way.. imagine when you were in high school - colloge living your life and the next day you learn you have breat cancer and need a double mastectomy how is that going to effect your life...

ugh I'm honestly so sorry this is probably going to do more damage then good i honestly cant explain what your sons going through very well becsause i personally dont even know what im going through.. ill tell you what i know now and what i wished woulda happened..

i wish i got my hormones back in check because testicular cancer can wreak havoc on that.. which can cause you to feel depresead and every thing now i wish i had someone i could vent 2 in the mental health community even though that might be hard to get him to start doing... and im sure your son is strong so dont take this the wrong way i wish my mom would have pushed me into doing more... its fine to let someone rest for a while but keep this saying in mind... a body in motin stays in motion eventully doing nothing becomes your nature weather you were born for it or not.. i never sat still a day in my life now i do nothing....  

so pat  your self on the back you are a good mom trust me i can tell... get his levels checked he probably needs testorone thats why the gym isnt doing anything for him becsaue his hormomes are all messed up... get him some one to talk to and really push him to talk to some one in the mental health community because he needs it... if you cant do that... somewhere were young cancer suvivors are that he cant talk to atleast....then once you got him started on the hormones you need to push him a little bit every day... think of it as ugh i dont know i dont have kids... how did you ever teach your son to do something when he was younger that he didnt want to do.. lets say riding a bike with out training wheels..

well you son just took his training wheels off and your going to have to push him a few times till he gets going and your going to have to let him fall a couple times too and its alright to catch him... but push him a little farther each time and eventully he will create his own motion...

god i ramble... im sorry if this is to hard to follow or doesnt help at all... im sorry but im going through what he is and sadly some times people need to be started up and hunny you have the keys in  your hand by just being here put them in the ignition now... let me know if this helps... or dont but i hope things get a little better for you... im sorry this happened 

Hrdnipz
Posts: 7
Joined: May 2015

and don't let any one tell yyou your a bad mom. These people don't know what you went through / are going through watch your son deal with this they have no right because thirty cannot begin to imagine stay strong toyour son is lucky even though he might not feel like it 

 

shadow01's picture
shadow01
Posts: 15
Joined: Oct 2008

I will second the comment about not letting people tell you're a bad mom.  They clearly do not understand what he's going through.  I should point out, before I forget (and the chemobrain I got from my first cancer, also testicular, will make me forget), you and/or your son can call the American Cancer Society 24/7 at 1-800-227-2345.  They have tons of extremely helpful material that can be a tremendous resource for both of you.  They also have oncology nurses available 24/7 that you and/or your son can talk to.  Tell them what's going on, and ask them to send any of their boooklets, etc., that might help.  They'll probably be putting a list together while you're describing what's going on.  During my cancers, I found them to be a priceless resource.  And it's all free.

Also, as has already been said, get his testosterone levels checked.  You will want either an endocrinologist or a primary care doc who is also an internal medicine specialist, as they're the ones who will continue to monitor his levels, and adjust treatments as needed.  If he gets put on testosterone injections, be advised that a 10cc vial, without insurance or other coverage, is about $110 and up.  Get the GoodRx app for Android or iphone and use it.  If I bought it with the local prescription drug cards I keep getting, I'd pay about $100.  Using GoodRx, I only pay $42 (or is it $49?).  Whatever, it's a lot less expensive.  Also, if he does need the injections, don't make the mistake of buying vials smaller than 10cc, unless you have no choice.  They get MUCH more expensive before you even get to 10cc.  Another note:  do not get the collapsable syringes that the pharmacy will probably offer first.  Testosterone is thick..very thick, and you have to press solidly to inject it.  The first (and last) time I used one of those, I ended up with no testosterone in my leg, and a whole cc of it all over my hands when the collapsable syringe collapsed.

Feel free to message me here if either of you need someone to talk to.  I may not see your message right awy, but will, at the very least, always try to respond on the same day.

My name, btw, is Jim.  I am a volunteer with the event leadership team for the 2016 Fort Walton Beach Relay For Life, and I am trying (without much success) to get setup as a volunteer at the  hospital's cancer care center (they love the idea...but hospital admin doesn't) to basically just be there for any patiends/caregivers who need someone to talk to.  So I'll be happy to chat with either of you if/when you need to.

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