Tip

[Les' Mom]

My son Les finished his first week of TIP. He has not been overly sick to his stomach. He is feeling very weak and tired. He is also having pain in his feet. They started him on meds for nerve damage. I am still numb from his numbers going up so quickly after BEP. I worry about Les because he doesnt want to talk about his cancer. He does what ever the doctors tell him to do. And gets up and gets in the car when I tell him we have to go somewhere. He never complains. He gets cranky but doesnt ask why. Has anyone else taken care of someone that doesnt want to talk? The counselor tells me that she would be suprised if he was talking about his cancer. I also tell myself that he wasnt much of a talker and sharing of his feelings before he got sick!

[TCLEFT]

The only thing that I can offer is this. I know for myself all I ever wanted, needed really, was for someone to be there, really be there. Not to dote on me, but to make sure things were in their place. A kind of unspoken, "I personally don't know what you're going through, but I'm going to help you get through it" (You guys go through something we'll never fully understand either and that's good I think). This takes a lot out of you, physically, and emotionally. The last thing I wanted to do was explain myself. In retrospect, I guess that was unfair to those caring for me, but I guess I was feeling like I had been dealt an unfair hand. Don't ask Les what he's feeling or even how he's feeling (too much), the answer is lousy. Hold his hand. See if he wants anything. Let him know you care. I know you're doing this already. To exercise this kind of demon, if he has one (my guess is he does), let him talk to those going through the same thing. You'll always be there for him 100%, but this is something different. The Caregivers have their own space as they should. We have all the rest (or do we?). I'd be a little afraid of a TC Mental War Room (dedicated to just that) myself. We carry the same load, caregivers and survivors, but in a different way. Will it come back? Will I be a burden? Will I ever be free of this? Nothing in this life is a sure thing, but for us, the scales have definately been tipped. That's the curse. The gift is not ever underestimating life or any of it's moments again. That is a good reason for quiet reflection. That reflection becomes a very powerful thing when you have the foundation of someone you love. My two cents.
Mark

[Les' Mom]

Thanks for replying. I guess Les and I are where we need to be. He knows I am there for him and him only. I make decision he is not able to make and keep track of appointments, meds, well the day of the week sometimes. A lot os time I just look at him and click my tongue at him. ITs like our secret language. Thanks again.

[TCLEFT]

Thanks for replying. I guess Les and I are where we need to be. He knows I am there for him and him only. I make decision he is not able to make and keep track of appointments, meds, well the day of the week sometimes. A lot os time I just look at him and click my tongue at him. ITs like our secret language. Thanks again.

The very fact that you have a "Secret" language, provides a power that he'll utilize to get better, and love you all the more. Hang in there. It's just as tough (maybe more so) on the foundations we rely on... all of you.
Much Love,
Mark

[Russell's Mom]

Hello Les' Mom,
It was and still is an odd combination of emotions for me with Russell. Russell is similar, he is very cooperative, but there have been times that the communication was so low, I didn't know which foot to put forward first. I have found that over time, the door swings again and the opportunity to share is wide open. It was very difficult for me to always be the one carrying the platter of unwanted tasks and reminders to do. It felt like I represented the difficulties that we faced and these were larger than what I could accomplish as a mom in order to help him feel better. Still we found some humor, I rented funny movies and Nova series films that would steer us into different directions. Now we have found moments, comparing our miseries..."do you know how hard it was to.......", and well "do you know what it was like for me to....." Then we find some deeper meaning and the fog lifts and we can see each others smiles. At a time when these young men are just stepping out, it is as if they get tossed right back into the boat again. I wish that there was a magic answer. I would do every minute again, the work just isn't on the happy side of life. Take care, Sharon

[Fed]

I know for myself all I ever wanted, needed really, was for someone to be there, really be there. Not to dote on me, but to make sure things were in their place. A kind of unspoken, "I personally don't know what you're going through, but I'm going to help you get through it" (You guys go through something we'll never fully understand either and that's good I think). This takes a lot out of you, physically, and emotionally. The last thing I wanted to do was explain myself. In retrospect, I guess that was unfair to those caring for me, but I guess I was feeling like I had been dealt an unfair hand. Don't ask Les what he's feeling or even how he's feeling (too much), the answer is lousy. Hold his hand. See if he wants anything. Let him know you care. I know you're doing this already. To exercise this kind of demon, if he has one (my guess is he does), let him talk to those going through the same thing. You'll always be there for him 100%, but this is something different.

It probably was overkill to quote the whole thing, but to tell you the truth, you couldn't have hit it more on the nail.

I'd be a little afraid of a TC Mental War Room (dedicated to just that) myself.

True... we deal with the mental screw-up in our own way... but if there were a Mental War Room, I would likely spend too much time there for my own good.

[Savin16]

I am sorry for what your son, and you are going through. I myself don't know what I would do if someone told me I had cancer. Where our men find the courage is beyond me.

I have a brother that was diagnosed in 2005 and he has been compliant up until this Jan. where he had to undergo 2 more rounds of chemo, this time VIP, he only completed one because it was too much for him, and he refuses to go back, even for checkups. Plain stupid. But he NEVER EVER talked about his cancer. I tried so many times to get him to even read through some of the posts here, nope. I tried to get him to meet with some men that I met through this site that live in our area, NOPE. He just never and still doesn't talk about it, and I think that's very unhealthy. He really never came to grips with the fact that he has cancer, and that's half the battle right there. As long as your son never gives up, this is just his way of dealing with the terrible situation. When my brother was having his 4 rounds of BEP, he even told the nurses not to let our mother come in. He never wanted her to see him like that. That he said would kill him, because he knows he'd see the saddness in her eyes. As if he let her down or something. So your son is on the right path with you as a great support and this is just the way he needs to deal.

[Les' Mom]

Thanks Krista,

Did your brother have bad side affects from the VIP? Les has only had one round of TIP but feeling it. I think because he is less than 12 weeks from BEP that this will be harder on him than the BEP.

[Jay68442]

I worry about Les because he doesnt want to talk about his cancer. He does what ever the doctors tell him to do. And gets up and gets in the car when I tell him we have to go somewhere. He never complains. He gets cranky but doesnt ask why. Has anyone else taken care of someone that doesnt want to talk? The counselor tells me that she would be suprised if he was talking about his cancer. I also tell myself that he wasnt much of a talker and sharing of his feelings before he got sick!

I was the exact same way. Always did what I had to do with a smile and never asked any questions. I had blind faith in my doctors and the details were their problem. I only thought about making the best of it and keeping my family from feeling the pain. I tried anyway. I'm sure they felt plenty but they would never see me cry or in pain. Just be there for him, that is all you can do. I didn't really talk about cancer to many years later.

[deceleven]

I can totally relate

I feel almost the same way that your son does. Especially recently, I am now in my final cycle of BEP (hopefully). And frankly, Im sick of everything; the blood tests, the pills, the cancer center I go to, and mostly the stand-still that my life is on. Honestly, the amount of attention and pity that you get from just mentioning the word "cancer" is simply not bearable for some of us guys. When you receive the same reaction over and over again by friends, family, etc it really just gets old. But, you really have to think about your reaction to the word prior to diagnosis. Chances are we all would act similarly... I try to bear this in mind. This whole experience is a huge test in patience, its just difficult to acquire it at such a painstakingly slow pace... All in the same breath, I would like to wish you and your son the best, we all hope the TIP does the trick!

[Savin16]

My brother had his 4 x's BEP ending in July or Aug, then RPLND in Dec. then VIP in Jan. The side effects hit harder quicker, and he was also hydrated with extra fluids on the weekends.
I'm sure in your son's case being only 12 weeks out, it's going to be harder too. But he's very lucky to have you, so stay strong, and hugs and prayers to you both.

[MRMRSU]

I guess I was feeling like I had been dealt an unfair hand.

But look how well guys like you play that hand... The ones who can arise above it despite the raw deal, those are the tenacious wolves I know who have such a hunger for life!!!

Hi Les' Mom: It's all so overwhelming for us as caregivers, and equally for our guys. My husband Andy could barely even break the news to his parents, and to this day we still have so many relatives and friends who do not know. I truly feel he's still uneasy about discussing it, even though he'll crack some "nutty" joke every now and then. Yes, we definitely have our days when we try to see the upside in it all. Humor has been a good prescription in our household. I think of silence as an approach to handling this diagnosis...a coping mechanism. We all pick our own methods in how we cope, and for your son - silence is his method. Nothing wrong with that at all in my book. Let your secret language get you through this. In the meantime, I send you my good thoughts and wishes as he continues his treatment.

[Mom]

When my husband had TC in 1980, no one knew about it but those who had to know. It wasn't until the treatment was behind him that I was able to talk about it and he never did. When my son was diagnosed, he did not want anyone to know. NO ONE. Of course, his work had to know because of the chemo. He was close to his office so his best buddy (a female who was going through treatment for liver cancer - at 40 yrs old) would bring him work. He would meet after 5:00 with his boss. He said that he just could not stand people looking at him with Pity. He never talked about it, not even to his friends, and to this day very rarely mentions it unless someone asks him a pointed question. He feels that part of his life is behind him. Pam, my heart aches for what you are going through. Wishing the best for Les and strength for you. Dianne

[Les' Mom]

Thanks Mom

I feel so much better knowing that Les is acting like he should and that I should let him be but always be there.
I had to call the pain doctor today and have them up his Fentanyl Patch. It is so hard to tell if it is the chemo making hurt, the Neulasta, or the cancer. Also went to my doctor and she decided that I need something to keep my calm and focused. I must say that this is the worse thing I have gone though in my life. I love my son so much.

[Karen]

Les' Mom,
As a mom, my heart goes out to you. I wish there were something...anything.....I could say to make this better for you and your son. If you ever need to talk, or vent, or cry, give a shout via PM to me or anyone here you feel you can connect to and we'll be there for you. We have many moms on this site, and while I have experienced the other side of cancer through my sister, dad, husband, and friends, I am certain only a parent can REALLY know what you are feeling. We are here for you....lean on us.

It's good you will have something for your focus and nerves right now....you need to take care of yourself as well.
Big hug,
Karen