Looking for perspective, hope I can find it here:)

[Alexie]

Hi, Im new here, and well, this is the first time I join a support group. Yours seems like a caring group and I hope I can become part of that.
My boyfriend, 20, was diagnosed with testicular cancer two months ago,since then he's had surgery and just last week he finished his first week of chemo but I haven't seen him since before he started treatment. His mom has been the one taking him and she is so strong and positive, and I really admire her for that. He's such a nice and sweet guy and I care about him so much, and he knows this. Im scared he might push me away, though, I feel he's starting to do it, little by littlt. I really dont want to loose him. Im worried about him, and most of the time I dont know how he's doing, lately, since last week Ive opted for just texting a little hearts or the good old oxox, especially when I know he'll be having treatment, even though he doesnt reply.
The other day we were kinda talking about us, and he said that these past wks had been really weird and not for the best, I asked him what this meant and he said he didnt know. Ive been giving him the space I know he needs, but I hardly see him, and I really do miss him. Im praying to God that He gives him strength. I hope you don't think Im selfish for saying this, for Im freaking out, about everything, his health, our relationship, the uncertainty of not knowing if he's doing ok.
Believe me when I say that I appreciate you taking the time to read my entry and also for commenting on it in case you do.
Thanks much and God Bless.

[Jay68442]

Hi Alexie,
Sorry to hear about another guy going through this and the effects it has on everyone around him. Its hard to say what your boyfriend is thinking but I will try to make you understand a few of the things that may be going on in his mind.

First and most obvious to me is that he would rather you didn't see him in his weakened state. When we lose part of our manhood and then we start to lose our hair it can be devastating, especially to a guy in his 20's.

Second, it is sometimes hard for the patient to deal with the pain he sees in the faces of his loved ones. I know that was one thing I hated most. When the people I cared most about came to visit me and in their expressions showed pain, it hurt. I did everything I could to assure them that I was ok and to keep smiling but still to have to look into their eyes was not fun.

I will say this. Don't give him to much space. I'm sure he needs you but doesn't want to ask. Or should I say doesn't want to seem weak. He is still a man and will not ask for directions when lost. The best thing you can do is be there for him and offer your love and support. Whether he asked for it or not. Believe me a little extra love can do no harm.

[Fed]

Hey Alexie,

The major purpose of this space is for you to look for perspective, just like you said in the title of your post. By all means, ask all the questions you have and feel free to vent as much as you need. All of us TC survivors wouldn't have made it this far without the help of caring and loving people, and it is evident that you fit into the mold of a supportive and compassionate person.

Jay and Paul have already shared several thoughts that could help understand what is going on with your boyfriend. At 20 years of age, having cancer is certainly unexpected, and it likely throws a wrench into anyone's plans. I think that one of the major shocks of being diagnosed at such a young age (and I think Jay will agree with me there) is that cancer is usually thought of as a disease of the very young (kids aged 0-4) of the very old. The first time I went in to see my oncologist, I was clearly the youngest one there. If that shocked me, then at 32, I gather it is probably far worse for someone who's 20.

I would like to suggest that you, and hopefully your boyfriend, check out the I'm Too Young For This! website. It was created by Matthew Zachary, a brain cancer survivor who was diagnosed while he was in college. It has loads of resources that may be of use to both of you in your trek through this.

The most important thing you can do is be there for your boyfriend, and reassure him that no matter what bumps on the road he's facing, that you're in this together. Best to both of you, and keep in mind that we're here for you.

[Karen]

Welcome Alexie. The guys here gave you some good advice and resources, so I have nothing to add now, other than reassuring you that we are here for you and can probably help him if he visits here.

[Alexie]

it feels so good to have someone to turn to that actually understands and knows what the situation is like, and doesnt judge...
Jay, Paul, Fed and Karen, really thank you!

Paul, he had surgery Sept 17, exactly 6 days before his birthday, he took the following week off from work and school, after that he went back to school but only for one wk (and he also quit his job) because him and his mom went to Houston to the MD Anderson hospital for opinions on what the next steps should be. He stayed a whole wk in Houston and they checked him again, CT Scans, Ultrasounds and all that good stuff.. They told him that with the sugery they had manged to get rid of the cancer (non-seminome) but there was a 40% chance of it coming back He was somewhat happy thou to hear that he might not need chemo at all (you see, he was worried about the side effects and what the treatment would be like) and instead was rooting for watchful waiting.

He went back to school and I was happy to see him a lil more cheerful. On thurs he had yet another app. with his onclogist here in town, but after that they decider to give him chemo. This really worried me, because he never told me why they had changed their mind.

A six wks treatment, he said, 1 wk of chemo from 8-5 every day, followed by two wks of recovery, followed by another wk of treatment and then another 2 wks of recovery.
He didnt say, howver, what type or kind of chemo, ..he hasn't been telling me much lately, I havent talked to him since thurs, today's sunday, and it almost feels like hes acting as if nothings happening. On thurs he did say that he was a lil scared, but when i tried to comfort him he subletly changed the subject, and well - as I already mentioned, I havent seen him since b4 the treatment. I have tried to "get him off his butt," but he says he's not in the mood.

He's not really replying my txts, and well I dare not visit him at home because that might upset him, Ive hinted Im gonna visit him but he doesnt sound too excited, I think is like you said Jay and he doesnt want me to see him at this time. So the only thing left for me to do is text without expecting reply ... just earlier I txtd a mushy txt quoting a song ---no, he didnt reply

Ill give him that website Fed, thanks, hopefully he'll want to check it out.

I do have a question, well two
How serious do you think his situation is? and also- should i keep txting without expecting a reply and calling him or no? I do want to but I dont want be pushy, or upset him.
Its ironic for sometimes i dont know what to say to him, I wish I knew exactly what he needs to hear, so I could comfort him in that way.

Sorry, long message, but you right Fed, it felt good to vent, I had been holding it all in and that can get ugly ..

Again, thank you so much,

Alexie

[Fed]

Hi Alexie,

I am glad that you have come here to let these things out. Based on what you mentioned in your last post (6 weeks of chemo), he is likely getting 2xBEP, which means he is probably getting the following:

Day 1: bleomycin, etoposide and cisplatin
Day 2-5: etoposide cisplatin
Day 8: bleo push
Day 15: bleo push
Day 22: start with the cycle all over again.

This type of regimen is usually given to stage I-B non-seminoma patients who show vascular invasion after the orchiectomy and have a large proportion of embryonal carcinoma in their pathology. As far as the seriousness of the situation, I feel fairly confident that your boyfriend will beat this and be cured. After he's done with chemo, they will likely check whether he's got any growth or masses in his lymph nodes by CT scan. If not, then he will be on surveillance, where he'll need bloodwork and radiology every couple of months or so to make sure it doesn't come back. After 2 years of being clean, you can pretty much call it full remission since non-seminoma recurrences usually occur in the first two years. It is critical that he keeps up with the follow-ups. You can reassure him, though, that he will be fine.

I hope this helps out. Take care, and just like you are there for your boyfriend, we're here for you.

[Margaret]

Alexie, I just wanted to add my support and love to you and your boyfriend during what I know is a tough time. When faced with cancer we will feel so many different emotions...sometimes it is tough to juggle all of them.

This forum is a great place for support and I hope you will visit often. In fact, maybe your boyfriend would find this could help him too. Cancer can make you feel very alone until you find a support network who has been through it too.

Hugs!

Margaret

[sldl1106]

Alexie -

Hi, welcome to the forum... I see the boys have gotten you off to a great start.

I know one of the things you can do is keep in touch with his mother if he's not explaining things for you. I mean, even if you don't know her that well it can let her and Paul both know that you care and want to give support. You must feel frustrated and useless, not knowing and not knowing what to do.

You can tell him how much you care for him, no matter what, and that you are there for him - even if he doesn't give you some flowery reply. He might not "sound" excited that you want to visit him but right now it may be hard for him to muster up any excitement for anything... he's just had this thrown at him. People have lots of negative ideas attached to chemo, sweats and aches and non-stop vomiting, and it scares them to death. He's just surviving right now. The cancer sounds like it was caught relatively early, which is great for him in terms of cure.

Good luck and let us know how you're both doing... we're here for you!

[CharlieFL]

Alexie, first off know that you and your BF are in my prayers so that a speedy solution to the situation is found - both on the health front and on the relationship front. You know, if it is true love what you feel for him and you want him to be a part of your life, you need to be a little more aggresive with him. What I mean by that is that in addition to texting him little hearts or kisses, you should come right out and tell him (preferably by phone) that you don't care what kind of treatment he is undergoing and that you don't care what he looks like today, you still want to be a part of it and are willing to help in any way possible. He needs to know this! It's OK to give the guy some space, but if he knows you truly care for him unconditionally, he may want you to be a part of his situation - one with very high probabilities of cure. On this forum you will find a couple of girlfriends who are committed to their boyfriends in a major way - obviously all relationships are different but it only goes to show you the power of love crosses all boundaries...........

[boyce]

Sadly, Alexie, welcome to the forum. I pray every day for the day when this forum and all cancer support is obsolete.

There have been a number of TC patients on this board who have withdrawn from friends and family when diagnosed and going through tretaments. It would take a much more experienced psycologist than me to tell you why that is, but it is not uncommon at all.

Other caregivers here could tell you all about their loved ones and the challenges they went through. But here's my experience and advice for whatever it's worth.

I HATED being weak. I HATED being loked at with pity. I HATED wondering if this was how I would die. And all of that worry and hate takes a ton of mental energy. That energy has to come at the expense f other things,a nd maybe your relationship is sufering from it. As much as I didn't want to talk about mortality, it was of some value, but I don't expect that your guy will talk about it until he is fully ready. This disease is a thief and a liar in many ways. It steals your peace, your strength and your time. It lies and tells you that you could have avoided the diagnosis somehow, that you will never be "whole" again and that you are less a man because you lost a nugget (some have lost 2).

So my advice....... See your guy. Take him dinner, or take a movie to his house, or show up with candy. He's scared right now. And he damn well should be. The prognosis overall is good, and a full recovery is very possible. Continue to reach out to him. For the Rest of his life he is going to be a cancer survivor. It sucks but that doesn't change it. And if you are to spend your life with him, then you will be spending it with a survivor. My wife and I embraced this group of people, this cause, and each other but it took time for bith of us to find acceptance of the disease.

Maybe it's too early to talk about your future, but you could sure talk about tomorrow. The next cycle, the bloodwork, the scans, the chemo, weight change, fatigue and all that he is going through. That may well lead into deeper discussions.

Keep trying to reach him. I was a total ass at times (even more than usual) during treatment, largely attributed to the steroids (decadron) that was part of my treatment. You caregivers all have the hardest role in this. I can't imagine having to sit on that side of this equation, and Bless all who do. It sounds like his mom is being a superstar, but there's' room for both of you to love this guy, OK?

With apologies for the ramble, don't quit. If he's worth the worry then he's worth the effort.

[Jay68442]

Alexie
I agree with Boyce. You need to start showing up and letting your love be known even if he doesn't ask.

[drom]

Another vote for Boyce, he speaks very true.

People react in different ways, my son wanted everyone around him, he needed it but he also had troulbe with the pain in our faces as we watched him suffer.

I remember one morning after I had been sleeping in th hospital for a few nights by Alex's side he looked at me and told me I smelled, go home and take a shower (I was taking a shower everyday thank you). It was his way of telling me to take care of myself. I thought it was great on his part.

His girlfriend stood by him and was always there for him even when he wanted to be alone. It meant a lot to him, to be so young and so scared and have people stand by him was important.

Your boyfriend is very weak from the chemo right now and unsure of what the future holds.

Alex said when he lost his hair and had a Med-A-Port he felt like a freak, everyone was looking at him. Maybe your boyfriend feels that way now. It is hard to say what is going on in his head but he needs people who love him around him even if he doesn't know it.

Good luck and know this can be beaten. It is a horrible disease and he faces a long fight. He needs a support system, it helps in ways he won't understand for awhile.

Domenic















Domenic

[a12curlyq]

I'm 20, too.

Hello Alexie,

*HUGS* from a fellow 20 year old. My boyfriend is also a Testicular Cancer Survivor, and I know what you're going through. My boyfriend has always been fairly open with me, and I was the first person he told that he thought he had found a lump. Even with him being as open as he is most of the time, he's been quite private about his thoughts and feelings, and I just try to respect that. It could be that your boyfriend doesn't want you to see him in such a weak state, and maybe he is embarrassed about everything that is going on. Try to think about how you would feel if you were in a similar situation.

Somethings that helped me and my boyfriend get through this were me just always being there for him and being a cheerleader for him. I was upfront and honest with him and told him that I could care less how many testicles he had. I told him that because of this he was even MORE of a man in my eyes because he was fighting with such strength and bravery. I told him over and over that he was my hero for going through this with such courage. I always asked him questions about how things were going and made a very big deal and celebrated a ton when things were going good.

My advice to you is to let your boyfriend know that you're not giving up this easy. Let him know that you still want to be with him and how much he means to you. Let him know that you don't think any less of him because he has gone through this.

Oh, I thought of another thing... My boyfriend was very adamant about not wanting people to feel sorry for him. He didn't want anyone to know what he was going through because he didn't want people to feel bad for him and have the reaction "oh, poor you, you have cancer." He really really hates that. I don't know if this plays a role in what your boyfriend is feeling.

Also, you should research the survival rates of testicular cancer. The cure rates are VERY high. It's one of the most treatable cancers, and your boyfriend seems to have caught it at an early stage which is even better.

Tiffany

[Jay68442]

Hi Alexie,
I was thinking about your situation and one more thought came to mind. And please don't take this the wrong way. Are you afraid to see your boyfriend while he undergoes treatment? It is not uncommon and there is no joy in seeing the person you love in a weakened state. Nor is visiting them in the hospital and seeing firsthand exactly what they are going through. I may be way off base here but please consider what I am saying. Stop for a moment and think about why you haven't gone to see him. No text message can say all the words that your presence alone will say.

[Alexie]

I am so glad to have joined this forum, my heart felt so heavy the day I found this site, I was researching the treatments or types of chemo he would be undergoing and a link to "Mike's story.. by his wife" took me to the personal stories page.

Reading your replies and seeing how you so kindly share your stories has helped me more than I can say or thank you for. Boyce, your reply in particular brought tears to my eyes, how cancer affects one's life and plans and just everything, cancer is a deceiving thief!

Thank you for the hugs just reading the word comforts!!

Fed, thank you so much for the info, it gave me a better sense of whats going, now when he doesnt feel like sharing that just yet.

Margaret and Sldl, yes there are so many different emotions in me, and yes I do feel frustrated and useless at times but sharing this has helped me so much, and your replies have given me perspective. Just to know that IT IS OK to reach out to him and just keep showing that i care, so he knows im not giving up that easy. It is kinda common sense i know, but I wasnt sure at the moment of what was it that he needed, I felt like I had no point of reference and well i didnt want to uppset him.
To have continued to give him more space and time however, would have been an aweful mistake. Truth is, I still dont know what he needs, but its better to go with my instincts than to make decisions for him.

I called him again last night, but he didnt answer,he did txt me tho, but it kills me cause is basically trivial talk, but hopefully he'll come about and open a lil more.

I have told him that I dont want him to push me away, and that I care, and that this situation doesnt change at all the way I feel about him, or what our relationship means to me. He said that maybe at times its like he's trying to push me away but that he didnt know why ...that kinda hurt.

Im so thankful to you Charlie, for keeping not only him but also our relationship in your prayers, "the power of love crosses all boundries" that put a smile on my face when I read it.

I talked to his mom the other day I told her I wanted to be there for him and also her, because right now she's the source of strength in their family. I asked her if she thot it was ok if i took him some warm apple pie to their house this wkend, (he loves warm apple pie!). So Im looking forward to that now, a lil nervous tho Im not going to lie. Jay, I hadnt thot about that, but I do know that I want to see him! I really miss him. I know that I have to strong for him and just act natural, I might visit him next wk the chemo sessions, and well if you have any advice for me regarding this I sure appreciate it.

I dont want him to think I feel sorry for him or sad, I know he's strong and thats what I want him to see.

My fellow 20 yr old girl, thanks for that reply Tiffany, I like how you said you've been your boyfriend's cheerleader this whole time, that is really sweet, hey Im ready to join the squad!

Again, thank you all, this forum is a blessing and you its angels!

Alexie