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dealing with a loved one with cancer

lovehim
Posts: 10
Joined: Oct 2011

I am thinking about going to support group. My boyfriend has stage 4 nsclc and he doesn't do anything we used to anymore. He changed many ways. One is he doesn't want to take walks no more. Other is he used to hang in his room a lot and doesn't do that. Sometimes I want to do my own things and he doesn't want me too. He doesn't cuddle with me anymore unless I ask for it. Also he never watched reality tv and now he does with his mom. He wants to be around his mom more and me a lot less. But does want me hanging out with the both of them. I want time with just him at times. They say I am over reacting but he wants to marry me and I wonder why he doesn't want to be around me really anymore and would prefer to be with his mom. One day I left for the whole day so he could spend it with his mom. When I returned he said he missed me and spent a hour with me when his mom was gone. After she returned he was back with her and I went to the room. Thinking if he really missed me he would come to the room. When I text him he said he was watching a show (which is reality and hates when I watch it). Why do I feel like he is pushing me away?

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

I welcome you here to these halls. Hopefully you will find these forums to be of help to you, though I would also suggest seeking support through therapeutic or group settings. This is a terrible diagnosis and for most a terminal diagnosis. I would like to know some more information about your boyfriend's treatment and prognosis. Is he currently in treatment or is he receiving care? You didn't mention this in your post. Are you his primary care provider? Does he live with his mother? He may be pulling away simply because he is trying to spare you the pain or shield you from it. Please elaborate some on the circumstances so we may help you more. It helps if we have some background with your experience with his cancer so that those that have experience with your situation can respond. I read your 'about me' and you didn't post any information there. I feel your pain in your post and would really like to offer more help, though I feel hendered by the lack of information to make an informed reply.

May you find peace in this day!
Michelle

lovehim
Posts: 10
Joined: Oct 2011

I am new to this site so I don't know how to do a site. My boyfriend is 38 and I am 34. He lives with his mom and daughter. His mom takes care of him and I try. At first he would let me and now he doesn't. He has chemo once a week and radition 5 times a week. He has treatment for 7 weeks. We have 3 weeks down and 4 more to go. He does want me to be around but don't want us time that much anymore and I have to beg or just leave. He never wants to talk about it and said he doesn't need a support group. His mom says maybe we both do but he says he is handling it just fine and doesn't need one so his mom said I need one. His mom says I need depression medicine also. He tells his mom a lot about our relationship and everything. I have been by his side since day 1 when he was offically diagnosed the week of labor day. I just missed 2 appointments because of work. I know since he doesn't have any income its harder and with him being a male. Head of household basically. Thanks for helping. Since I been using this site its a little better but not much cause I can not get him to talk. He also puts me on the spot with his mom. I feel like its me, his mom and him in a relationship basically. He tells me he isn't going anywhere. The doctor says they will get rid of the cancer. I know his primary focus is going better but he needs to include me. We are suppose to be in this together.

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

Joining a group is a good idea, maybe you could go together. You don't say how long your boyfriend has been dealing with this diagnosis or how old he is. He may still be trying to find his way and needs mom's reassurance. His life has changed dramatically so it isn't unusual that he has changed. I'm guessing that you have changed, too. You need to sit and talk to each other. You are both afraid of what the future holds. Share those feelings. Best of luck. Fay

lovehim
Posts: 10
Joined: Oct 2011

He refuses to join a support group even if it will help me. He doesn't want to talk about the future anymore but wants us to get married but I don't even know about that now. When I try to talk to him about it he snaps and yells at me.

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

Lovehim,

Your site handle is really prophetic, as it is the very insight I would offer. There is much that goes on in the minds of those battling such a scary disease! There is comfort to be found in just loving him. Being a caregiver on any level has a profound effect on not only you, but the patient as well. We never want to find ourselves in the dependent care of others.

Your boyfriend has a lot of history with mom and it sounds to me he is clinging there for the 'familiarity' of comfort. That is not to say that there is no comfort in your presence, only that it is 'familial' in nature. He has a daughter too and that is a heavy thing to deal with as you are sick. I would NOT and I repeat NOT read more into the changes than he is verbalizing to you. If you do feel depressed by his withdrawal, please do seek professional counsel or a group to join. As I have said several times since the beginning of our (mine and my husband's journey with cancer) 'no one knows but god what the outcome is to be, so please cling to your moments and cherish what you do have, instead of focusing on the things you don't have.' Trying to presume his feelings or assuming the worst of your situation will only exacerbate your fears. Living in fear of the unknown will cloud your ability to see the moments of promise.

If he is saying he wants you two to marry, trust in it and support his decisions. Find comfort for yourself through providing for your own needs in a group or therapist at this point. It is too heavy a burden on patients battling cancer and all the treatments that go along with that. Let him see the strength and commitment you have through providing for yourself at this point so that he may not carry a 'guilt' of not providing for your needs at this point. We are all individuals and as such are responsible for our own happiness and getting our needs met. If you can't get your needs met at this moment with him, then seek counsel and know that all of this is temporary. This is how we meet challenges in relationships even when not faced with a life-threatening situation. At this moment, it is about survival and that changes the rules of exchange. You can not possibly have expectations of him to meet all of your emotional needs when he is experiencing such traumatic scenerios surrounding his own mortality possibilities.

Trust me when I say, we are very capable as humans of 'bringing about our own worst fears' through pushing others to concede to our own ambitions. The very thing you fear worst will be the result if you push too hard. Be patient and understanding for him and his mother during this most difficult time. Display the strong individual you CAN be and that in and of itself will bring him closer in the end. People in general become fearful of those whom can not remain strong during times of crisis and you don't want that for your position.

We find comfort being surrounded by strength and patience, that defines a 'safe' zone for patients with cancer. Weakness and insecurity is not becoming of any family members in times of crisis. I hope I have not offended you in any way, as I can only offer my own opinion and be honest in my own perception. Take what you want and leave the rest. I speak as a caretaker to someone I have been married 16 years, and he is terminal. Even in my knowing of the impending loss, I am his rock even if from a distance at times.

Please do find counsel on your own and by yourself for yourself. You don't need to focus on 'fixing' him right now as the only thing that needs to be fixed right now is his health and that is being well cared for by the doctors and god.

I pray for peace in your day and a chance to just be 'still'.

Regards,
Michelle

RAB73
Posts: 27
Joined: Oct 2011

Michelle,
This post helped me out a lot. It totally describes my situation right now, and made me realize that if my partner needs space right now, that's what we will get. I will continue to take care of things around the house, but I won't force him to talk to me if he doesn't want to right now. How do you always know the right things to say?

Rachelle

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

Lovehim,

I fear that my response might have sounded a bit brash, though I can not help but hear your pleas for attention from your love (boyfriend and possibly life partner). I do come from a place of fear for you, in that I fear your actions and desire for more time with him will only lead to more heartache for you. You may feel I am being hard in my response, but I am here for YOU! The support I offer is of preservation of what you do still have with your boyfriend and to retain that relationship in tact through this process. That is my concern for you. Being a committed caretaker for someone is truly a selfless job and a very commanding one at that. We do have to take care of ourselves for we can not offer that which we have not acquired for ourselves. Possession is 9/10ths of the law. I mean that from the most caring of intentions. We do have to get our needs met, and SOME of that comes from the moments we can share with our loved ones, but some can not, and those are the needs we have to provide for ourselves while they can not. Stand in the gap and be strong as there is nothing harder than dealing with this type of crisis.

Regards,
Michelle

wifflefrog
Posts: 32
Joined: Sep 2010

My husband is 38 years old as well and diagnosed with stage 4 metasitic parathyroid cancer. There are no more options and I too many times feel as you do. I know he loves me and when he's in a good place, he tells me that. Somedays I feel selfish, but I do need to focus on me as I need to be strong for my son who's almost 2 & the family. I mean you can beg what you want from him, but fighting cancer kicks your butt, he probably can't give much. And as other stated nothing like having your mommy all that is so unconditional and sure safe. So good luck, try to focus on you & the now otherwise you may become bitter. Its tough not to do. I have been handling this for almost 2 years now, it does not really get easier so you do love him then love him through it all.

palmyrafan's picture
palmyrafan
Posts: 397
Joined: Mar 2011

I would definitely consider either a support group or private therapy or both. Sometimes you can find both at the same location. I would, if possible, see a therapist who specializes in chronic or terminal illness as they are equipped with the knowledge and the tools necessary to help you cope with the situation.

That said, I am the brain cancer patient and my husband is my caregiver. I understand both sides of the situation. From the patient standpoint, you have to understand his point of view. He is trying on a daily basis just to get out of bed and survive the day. To you, it may not seem like a big deal. But to him it is the world. He wants to watch reality tv now. Why? Because any reality is better than the one he has with his cancer. He wants to escape what he knows is going on and what could be inevitable and that is extremely difficult to swallow. You also need to remember that he turns to his mother because mothers are the worlds best caretakers. That's who and what they are: Mothers. You must be extremely important to him or trust me, when the cancer diagnosis came and slapped him up side the head, you would have been gone. Most cancer patients don't leave people in their lives who aren't important to them.

Take time for yourself. You need the breaks to maintain your sanity and sense of self. Don't resent the time your bf spends with his mother. That is their time just as you have your time with him. As for him taking walks? Remember that he may not have the energy levels that you do to do those types of things now. You'd be surprised at quickly our energy levels flag and falter. It doesn't take much to wear us out and somedays success for us, is simply getting out of bed.

Good luck.

Peace,
Teresa

ritawaite13's picture
ritawaite13
Posts: 249
Joined: Aug 2011

Hi, and welcome to the site. You've gotten some great advice from Michele and Theresa and others who've posted. Take it to heart! Definately get some help for yourself even if your boyfriend isn't interested in going with you.
The only other thing I can add is that with this cancer, he can apply for Social Security Disability. If he hasn't already done that, he should take care of that ASAP. Taking away some of the financial burden of cancer can be a huge relief for all concerned.
Take care,
Rita

KLScoville's picture
KLScoville
Posts: 161
Joined: Mar 2011

I agree..you definitely got some great advice from all of the ones who have posted. I too am a caregiver for my husband who has stage 4 NSCLC with mets all along his aorta. He was diagnosed on 3/3/11, does not want chemo but did receive some radiation for the tumors in certain areas. From your post I see that your boyfriend is looking out to be with you and marry you. He is trying with his treatments to be around as long as possible for you. I am sure he wants to "be" with you as a healthy individual, not as a patient. I agree with the familiarity of having Mom around. I am sure if my husband's mother was still living I would of been put out to the curb (not literally). My husband and I have become so much closer since his diagnosis but it did take some time. Men have this thing about having control and when they lose it, it is a hard reality to face. All you can do is be strong for him, let him have his moments and always be there for him whether it be in the "presence" or not. Definitely get some counseling of some type, you cannot do this on your own. For me, this discussion board and the chat has helped me alot (please see past posts). Unfortunately I am all alone in taking care of my husband. Be thankful of the other help you are receiving! Don't be resentful towards him or his mother. This is a terrible disease and sometimes the treatments are hard on the patient because their immune system is all knocked down to begin with. You mentioned that he has a daughter, how old is she. You may need to be her rock because this is probably devestating on her. She also may need to get some counseling. Maybe you two can go together (depending on her age). Be each others support group through this, you, his daughter and his mother. You don't need any resentment right now between all of you. I am sorry if this also sounds harsh but this is now your new normal and it is something that needs to be dealt with soon.

Take care and I will pray for your situation and boyfriend!
~Kelly

P.S. please keep us updated

lovehim
Posts: 10
Joined: Oct 2011

I have read past posts and it is helping me understand a little more. We are halfway done everything and he is doing good. I talked to him about some things. It is a little better but not much. He should only have 3 more chemos and 17 more raditions unless the doctors want him to do it longer. I am also worried about the future. What if this isn't working. I believe it is and just keep praying. Him and his mom don't ever feel like talking about it. I am still looking into some support of support group. Also I was wondering which is more importmant sleep or eating. I know he is eating because he gained 7 pounds since the beginning of treatment. Thanks for all the help so far.

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

I am also pleased to hear that things are a little better. That makes for progress! It is tough navigating through this, I know. On the sleep vs. eating thing, try not to worry yourself about either. Believe me, he will eat if he wants and needs to, and will sleep when his body is telling him he needs to. They are both things that only his body will know when to force the issue. Big hugs and squeezes to you!

-Michelle

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

If he's getting prednisone during his treatment (most likely), understand
the steroids have many side effects. I've gained weight during every chemo
treatment (just finished) and ate like a pig during and a few days after treatment.

Prednisone has side effects - you can have major mood swings and I can
speak from experience, you tend to over react to things. It also impacts
your ability to sleep and by that I mean going to sleep and staying asleep.
I could not believe how long I could go with so little sleep. When it wears off,
I tend to crash like a kite and do sleep better. Generally though my sleeping
pattern has been sleep 3-5 hours, get up for 3-5 hours, sleep 3-5 hours.
Hopefully that will get better now the chemo is finished.

I just wanted to share that. I think looking into a support group is a great
idea and I'm glad you're doing a little better.

Big hugs,

Jim

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

Thanks for posting that Jim. My husband opted out of chemo and rads as he would have only received them for palliative purposes and that scared him that he might be ill feeling for the rest of his days. I have no experience with the chemo meds and such other than the posts I read in the EC board. It helps to know what the meds do to the one taking them. You are almost a week out of your last chemo treatment!!! Wooohoo! When is your port scheduled for removal? Or are they waiting for scan results?

Love to you!
-Michelle

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Yep, as of about an hour ago, it's exactly a week now
that I was "de-accessed". Makes me sound like a "borg" from
Star Trek Next Generation - yeah I'm a SCI FI junkie but not
exactly a "trekkie".

I believe the oncologist told me they would leave the port in for a few months
after chemo just in case we need it again - but that was at the very beginning
back in April before we started so she may change her mind.
I've kind of gotten used to the little booger but I won't be sad to
see it go :).

I go for CT Scan on 11/2 and see her again that day.

Hugs to you guys.

Jim

LilChemoSmoker's picture
LilChemoSmoker
Posts: 192
Joined: Oct 2011

I am glad you have been de-accessed! I like Star Trek as well. I shall mark my calendar and will be with you in spirit on Nov. 2!

Hugs to you Jim!
-Michelle

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