he's so sick of it all

thegirlfriend

well, i have to say, the day finally came when Paul has finally said that
for him its pointless to tell him any more suggestions of what will help with all
of these side effects that just dont seem to get better.
He says he will spend no more money on anything as he has a cabinet full of suggestions that have not worked.
He is in such a foul mood almost always. I get that. Im sad about it but I get it.
his saliva issue, taste issue, mucous, thrush, all have not progressed for the better,
in months. he's almost 6 months out of treatment. It is taking a toll on me and my efforts to encourage him. Just sounds like Im full of crap, and Im tired of sounding so sweet and full of crap, when nothing improves. Living 8 hours away is a very big problem becaues he cant see my face when i speak to him.
Ive run out of ways to sound reassurring, believable, and encouraging to him not that he
would actually believe anything else. he is very down, keeps saying his prayers, pushes himself when he has no energy otherwise he will go nuts. He is retired and has been for many years. Its very hard to keep him on the positive feel good track when he feels so rotten and it doesnt change. I dont know what else to do on my end. Suggestions to him are just not welcome anymore. He said that today, dont know if that will be for next week, or next month.
Guess that would depend if he has any improvements.

Skiffin16

Attitude is Everything
Unfortunately or fortunately depending on your perspective, attitude is everything. If you have a positve attitude it definitely pays off. I have seen it with my own eyes. I'm not really sure what to tell you, other than that.

God Bless,
John

handl1983

Can't say that I blame him.
Can't say that I blame him. My husband has been going through this since April of last year. Pretty much everything that could go wrong, has. He is the toughest person I know, but the pain, weight loss,treatments etc. get him down. We have 3 different congregations from churches praying for him, plus all of our family and friends. I tell him to hang in and be strong, but if this were me, I dont think I could do it. I guess I know how you feel, because we are in the same boat. I dont have a magic answer for you ( although I wish I did!) but know that you are not alone!!! I will add you to my prayers.
Be strong and don't give up on him!!!
Lori

slickwilly

handl1983 said:

Can't say that I blame him.
Can't say that I blame him. My husband has been going through this since April of last year. Pretty much everything that could go wrong, has. He is the toughest person I know, but the pain, weight loss,treatments etc. get him down. We have 3 different congregations from churches praying for him, plus all of our family and friends. I tell him to hang in and be strong, but if this were me, I dont think I could do it. I guess I know how you feel, because we are in the same boat. I dont have a magic answer for you ( although I wish I did!) but know that you are not alone!!! I will add you to my prayers.
Be strong and don't give up on him!!!
Lori

dealing with daily life
It seems each survivor has their own issues to deal with. I know I expected more out of life and had hopes that things would return to normal when I finished treatments. But I was left with the saliva, taste bud, sinus cavity issues. Along with a small brain tumor, ruptured lower disc, torn knee legiment and then the major issue of my life, my neck went to pieces with arthritis inside and outside the spine. So living in daily pain is quite normal for me now. I have every right to sit on the couch and let life pass by. But I made the choice to get the most out of life. I decided that nothing was going to stop me from finding things in life that I can do as 95% of my previous life before cancer was now out of reach. Any impact on my body causes pain for days so I am now sailing instead of beating myself up on a snowmobile. I camp with a huge air mattress. I berry pick and work in my garden. I hike with my backpack full of drugs, but at least I am out in the woods. And I have a great family that understands and will work around my pain issues. It might take counseling or a friend or relative to pick a person up and get them back into living life. And it takes a will to keep fighting despite constant set backs. Whatever the case make sure you don't stop living life because your husband has given up. And don't be afraid to kick him in the butt. Sometimes we need to be reminded that there are people that love us and we are not just living for ourselves. Blessings Slickwilly

thegirlfriend

handl1983 said:

Can't say that I blame him.
Can't say that I blame him. My husband has been going through this since April of last year. Pretty much everything that could go wrong, has. He is the toughest person I know, but the pain, weight loss,treatments etc. get him down. We have 3 different congregations from churches praying for him, plus all of our family and friends. I tell him to hang in and be strong, but if this were me, I dont think I could do it. I guess I know how you feel, because we are in the same boat. I dont have a magic answer for you ( although I wish I did!) but know that you are not alone!!! I will add you to my prayers.
Be strong and don't give up on him!!!
Lori

very tough
Hi Lori,
funny, my boyfriend is the toughest man I have ever met too.
He t0o has so many praying for him, he is very involved with church, and is a man
of faith, but he is not very happy with some of the direction that the almighty one
has his life going in. He knows there is nothing he can do about that and that he must wait, but feels so overwhelmed by the negative effects, its way too hard to see what he has already surpassed.
especially since what he has gotten past was so slow in coming anyway.

I have no intention of giving up on him, as long as he wants me around, or really even otherwise. His mood was a bit better today, and I was better as well.

Thanks everyone for all the responses.....

friend of Bill

sick of it all
Been there, several times. Wasn't pretty to be around. Unfortunately I usually saved it for my wife who was merely desperately trying to keep me alive by offering remedies, cheering me on, being hopeful - a forest that I could not always see. What I could "see" was the grinding suffering and glacial "progress." I would get apathetic and demoralilized and when I had a little energy would lash out at my #1 fan - something I couldn't help and still feel so bad about. This would be followed by a snot slinging emotional meltdown where I would officially announce that I had "given up" which would leave me a spent basket case. It was probably tempting for her to accept my invitation to "leave me the hell alone" but she did not. (Interestingly most every time I would soon feel a little better after my blowout and be able to get back with the program. Odd.)

Sometimes I remind myself that if you went out and forceably inflicted a terminal disease, mutilating knifing, searing radiation, injection of poison chemicals and months of misery (oh, don't want to forget destruction of taste, hearing, smell, touch, hair and so on) INVOLUNTARILY on a innocent bystander, you would likely be put on a most wanted list, arrested, convicted, locked up and deemed a cruel, heartless victimizer. And what would we expect of a victim of such abuse and torture? Beats me, except I think they would me a mess, as would the people who love them.

Suffering sucks. I found it just unbearable at times and acted unbearably. I regret it. Fortunately no one gave up on me.

Bless the victims of this terrible malady and those who live with, love and care for us - during the good and sucky times.

Thanks for e-listening.

Vince

thegirlfriend

friend of Bill said:

sick of it all
Been there, several times. Wasn't pretty to be around. Unfortunately I usually saved it for my wife who was merely desperately trying to keep me alive by offering remedies, cheering me on, being hopeful - a forest that I could not always see. What I could "see" was the grinding suffering and glacial "progress." I would get apathetic and demoralilized and when I had a little energy would lash out at my #1 fan - something I couldn't help and still feel so bad about. This would be followed by a snot slinging emotional meltdown where I would officially announce that I had "given up" which would leave me a spent basket case. It was probably tempting for her to accept my invitation to "leave me the hell alone" but she did not. (Interestingly most every time I would soon feel a little better after my blowout and be able to get back with the program. Odd.)

Sometimes I remind myself that if you went out and forceably inflicted a terminal disease, mutilating knifing, searing radiation, injection of poison chemicals and months of misery (oh, don't want to forget destruction of taste, hearing, smell, touch, hair and so on) INVOLUNTARILY on a innocent bystander, you would likely be put on a most wanted list, arrested, convicted, locked up and deemed a cruel, heartless victimizer. And what would we expect of a victim of such abuse and torture? Beats me, except I think they would me a mess, as would the people who love them.

Suffering sucks. I found it just unbearable at times and acted unbearably. I regret it. Fortunately no one gave up on me.

Bless the victims of this terrible malady and those who live with, love and care for us - during the good and sucky times.

Thanks for e-listening.

Vince

your sure nailed it
if my boyfriend was on this board, id have thought he signed in with an alias and your post
would have been his.

Omg, I dont know the depths of where we, the ones who love all of you, reach for the love, patience and understanding it takes to take the some of the abuse of the stranger that we sometime feel has taken over you. Im sure I dont know where you all who are inflicted with the "C", reach for your personal strength either. The endless supply that either of our places has sure gets disguised. The slightest bit of an improvement almost seems like a tease or a mirage, not knowing if it was real and then not there the next day again.

Vince your post brought tears to me, because if my boyfriend was able to say things like that, it would sound just the way you put it.

thanks for posting....

delnative

thegirlfriend said:

your sure nailed it
if my boyfriend was on this board, id have thought he signed in with an alias and your post
would have been his.

Omg, I dont know the depths of where we, the ones who love all of you, reach for the love, patience and understanding it takes to take the some of the abuse of the stranger that we sometime feel has taken over you. Im sure I dont know where you all who are inflicted with the "C", reach for your personal strength either. The endless supply that either of our places has sure gets disguised. The slightest bit of an improvement almost seems like a tease or a mirage, not knowing if it was real and then not there the next day again.

Vince your post brought tears to me, because if my boyfriend was able to say things like that, it would sound just the way you put it.

thanks for posting....

Wow, Girlfriend
You're catching on fast.
You wrote:
"The slightest bit of an improvement almost seems like a tease or a mirage, not knowing if it was real and then not there the next day again."
I have a dear cousin who fought and won a battle against a very aggressive form of breast cancer. During that battle, she told me that her husband, Joe, said it was like "a time of constant commas, never an end period."
This is sure 'nuff tough, tough on those of us with cancer and tough on those of us who care for those with cancer.
But together, we can win.

--Jim in Delaware

naturenaw

Hang in there
Get ready for a long post here....
I am so sorry that you are having to reach deep to keep up the strength for your boyfriend. I know today how deeply thankful I am that my caregivers (my husband, young kids, and parents) didn’t give up on me. Hang in there!!

I have a viewpoint of both the caregiver and the patient since I have experienced both sides and believe me when I tell you this – yours is a hard job to maintain! Again, hang in there!
On the topic of positive attitude…. I think it is OK to hate cancer and to think it sticks and to think that the life of hell getting through the treatments and everything it does to your body and your life all sucks because it DOES!!

I think it is OK to be negative about all this crap. I just hope your boyfriend will have his times for being angry but also have his times for recognizing the gift of life he has been given each and every day even if life has now changed drastically.

Somebody here mentioned the tease of seeing some positive and then it disappears – well I hope you can see some glimmers of positive in there from him, some tease to keep you not giving up on him. If he doesn’t want suggestions, then maybe just be there to give him support by listening or just fill him in on your daily life and what you have been doing – distract him perhaps from his anger and his daily struggles and give him a glimmer of what can be.

When my daughter was at her worst from her treatments, I read to her and told her stories to distract her. Distraction can help some folks but take clues from him and if that is being rejected too, then keep hanging in there!

After my treatments, I am thankful that my mom kept trying to make different whipped up foods and soups and that she kept informing me of all the details my kids were going through and that my husband would still fill me in on his day when he came home no matter how grumbly I was. I am thankful that they didn’t give up on me. So thanks so much for reminding me of how thankful I am for what they have done for me!

Also, I experienced a lot of pain for a long time after treatments (maybe even worse after the treatments than during). They say radiation is the gift that keeps on giving, and the effects continue long after treatment. So when my family expected me to turn the corner and be better, it was months before that happened. I couldn’t live up to their expectations or my own. We all expected me to be better so much sooner. That can be very frustrating and I can understand the state your boyfriend could get into if he is experiencing that kind of pain and frustration. I don’t know when he will “turn the corner” but I hope it is soon for you both! Also don’t be surprised if he is better one day then back worse again. The up and downs are truly like a roller coaster rather than just going around a corner. A roller coaster in the dark, upside down, … you get the picture – you’re experiencing it yourself.

Anyone who has been through cancer(that includes all the caregivers) deserves to be negative and angry about it. We deserve to shout out at the top of our lungs (if our throats could handle it) and scream about it!

Cancer sucks.

It helped me to have my kids getting me up and wanting to get going for them every day. So somehow I hope his pain can ease and I hope he can see that all these gifts he has been given – the gift of getting through the next moment and the gift of the next moment… that they are something to make into something he wants them to be.

I think everyone on this board deserves to be angry and mad about our crap we went through and what the cancer stripped our lives of…..BUT –we also need to remind ourselves daily of each day that is given to us. Each day we wake up and face is truly a gift and what we do with that gift is our choice. The choice seems to get taken away from you when you are in extreme pain and figuring out that he can still have some choice in what he does with the moments he has been given is where it may be hard for the patient in pain. If we choose to scream and be angry, that’s our choice and we deserve it. But we also then should remember that we have been given another day, and another and another and once we re-define what our “normal” life is to a” new normal”, it’s a whole lot easier to get past the screaming and anger and realize how great life can be.

I spent months in pain and wondering if I’d ever get out of it and disappointed at myself and feeling like I was letting my kids and my husband down and wondering when I’d ever get back to normal. If I had only known that if I just re-defined what normal was, I could have gotten back to it a whole lot sooner!

Here’s hoping to some glimmers for you and hope you can find the strength to hang in there for him when it sound like he needs it more than ever!
Take care!

P.S. Humor worked wonders for me, perhaps a joke a day can help him. Humor even rhymes with tumor!

Kent Cass

naturenaw said:

Hang in there
Get ready for a long post here....
I am so sorry that you are having to reach deep to keep up the strength for your boyfriend. I know today how deeply thankful I am that my caregivers (my husband, young kids, and parents) didn’t give up on me. Hang in there!!

I have a viewpoint of both the caregiver and the patient since I have experienced both sides and believe me when I tell you this – yours is a hard job to maintain! Again, hang in there!
On the topic of positive attitude…. I think it is OK to hate cancer and to think it sticks and to think that the life of hell getting through the treatments and everything it does to your body and your life all sucks because it DOES!!

I think it is OK to be negative about all this crap. I just hope your boyfriend will have his times for being angry but also have his times for recognizing the gift of life he has been given each and every day even if life has now changed drastically.

Somebody here mentioned the tease of seeing some positive and then it disappears – well I hope you can see some glimmers of positive in there from him, some tease to keep you not giving up on him. If he doesn’t want suggestions, then maybe just be there to give him support by listening or just fill him in on your daily life and what you have been doing – distract him perhaps from his anger and his daily struggles and give him a glimmer of what can be.

When my daughter was at her worst from her treatments, I read to her and told her stories to distract her. Distraction can help some folks but take clues from him and if that is being rejected too, then keep hanging in there!

After my treatments, I am thankful that my mom kept trying to make different whipped up foods and soups and that she kept informing me of all the details my kids were going through and that my husband would still fill me in on his day when he came home no matter how grumbly I was. I am thankful that they didn’t give up on me. So thanks so much for reminding me of how thankful I am for what they have done for me!

Also, I experienced a lot of pain for a long time after treatments (maybe even worse after the treatments than during). They say radiation is the gift that keeps on giving, and the effects continue long after treatment. So when my family expected me to turn the corner and be better, it was months before that happened. I couldn’t live up to their expectations or my own. We all expected me to be better so much sooner. That can be very frustrating and I can understand the state your boyfriend could get into if he is experiencing that kind of pain and frustration. I don’t know when he will “turn the corner” but I hope it is soon for you both! Also don’t be surprised if he is better one day then back worse again. The up and downs are truly like a roller coaster rather than just going around a corner. A roller coaster in the dark, upside down, … you get the picture – you’re experiencing it yourself.

Anyone who has been through cancer(that includes all the caregivers) deserves to be negative and angry about it. We deserve to shout out at the top of our lungs (if our throats could handle it) and scream about it!

Cancer sucks.

It helped me to have my kids getting me up and wanting to get going for them every day. So somehow I hope his pain can ease and I hope he can see that all these gifts he has been given – the gift of getting through the next moment and the gift of the next moment… that they are something to make into something he wants them to be.

I think everyone on this board deserves to be angry and mad about our crap we went through and what the cancer stripped our lives of…..BUT –we also need to remind ourselves daily of each day that is given to us. Each day we wake up and face is truly a gift and what we do with that gift is our choice. The choice seems to get taken away from you when you are in extreme pain and figuring out that he can still have some choice in what he does with the moments he has been given is where it may be hard for the patient in pain. If we choose to scream and be angry, that’s our choice and we deserve it. But we also then should remember that we have been given another day, and another and another and once we re-define what our “normal” life is to a” new normal”, it’s a whole lot easier to get past the screaming and anger and realize how great life can be.

I spent months in pain and wondering if I’d ever get out of it and disappointed at myself and feeling like I was letting my kids and my husband down and wondering when I’d ever get back to normal. If I had only known that if I just re-defined what normal was, I could have gotten back to it a whole lot sooner!

Here’s hoping to some glimmers for you and hope you can find the strength to hang in there for him when it sound like he needs it more than ever!
Take care!

P.S. Humor worked wonders for me, perhaps a joke a day can help him. Humor even rhymes with tumor!

Expectations, and comes a time
Well, Kathy, I am sorry to hear of your companion problem. Reading the many posts, it has kinda dawned on me that the issue just might be expectations. The word "normal" brought that into focus.

The subject matters we deal with surround a core= the Big C. Not a one of us wanted to see our tumors develop, etc., or to go thru the extremes of treatment side-effects, which continue post-treatment. But this is the Big C, damnit. Yes, it is right to get angry- to get angry at that C, which is the foe in the battle we fight. It is, however, not right to get angry at anything, or anyone, else, in my opinion- such as that is childish, and wrong, and a few more things that are not complimentary. Is your boyfriend still casting breath? What were his expectations, Kathy? He is living what his expectations should have been- this being contingent on his being active with his Med team for the best quality of life/recovery possible. Like it or not, and I hope you will show him this post, that is what is real.

Those who are worse-off than us are many. The MS victims in wheelchairs, or bed-ridden; or, the quadraplegics; or, etc., etc. No- acknowledging them does change our physical being, as it is, but it rightly changes our view on just how bad we've got it in life, and should offer each of us a better view of what we see when we look in the mirror. Again, the core we deal with is the Big C, and battle therewith. It was at the 09 Thanksgiving family gathering that I revealed to all that I had that C. What I told all, there, on that day, was that all it meant was I was gonna have to roll-up my shirtsleeves, re-tie my shoestrings, maybe take my belt in a notch, or two, and then find a mean-kinda grin to wear, now and then. Those were my expectations, Kathy, along with a little something else= "come what may." And, oh yeah, I did struggle for awhile to regain that grin, now and then, but that is the way of men in battle, Kathy, as I think your companion, as man, does know.


Thus, and I truly do not mean to ruffle any feathers, I must say that in my opinion there comes a time when sympathy can work to the negative, and the greater focus of caring should become less sympathetic. That is not to say you are there, Kathy, but it is something you rightly should realize as possible. There are professionals to help with C struggles- people who deal with the mental, and even the strongest of men should be smart enough to know when they need help with the battle, if they are losing said battle. Yes, it starts with the Med team of Onco/Rad and his physical condition, and whether or not improvement can be made, and then maybe your Primary Care- their jobs are to assist in the survival your companion has going for him.

Self-pity has no rightful place in this battle with the Big C. Yes, it is in the back of all our minds, including mine, but it is of the dark clouds. To fight the good fight, Kathy, and win the battle, is to recognize all the dark clouds for what they are- some can provide the illusion of comfort, but that illusion can be very negative towards doing one's best, and those clouds can grow larger with allowing weakness to fester. Your companion is a soldier in a battle with the Big C that continues, Kathy. He must realize that as fact.

And, Kathy, you must also consider yourself, and your relationship with him. He must want to help himself in his recovery. If he is truly incapable of that, then you know what's down the road he is on, ultimately. He must be willing to continue fighting the battle, as we all are- current, or post-treatment.

A Beckon Call to all- hopes and Prayers be with Kathy.

Kathy- Believe

kcass

thegirlfriend

Kent Cass said:

Expectations, and comes a time
Well, Kathy, I am sorry to hear of your companion problem. Reading the many posts, it has kinda dawned on me that the issue just might be expectations. The word "normal" brought that into focus.

The subject matters we deal with surround a core= the Big C. Not a one of us wanted to see our tumors develop, etc., or to go thru the extremes of treatment side-effects, which continue post-treatment. But this is the Big C, damnit. Yes, it is right to get angry- to get angry at that C, which is the foe in the battle we fight. It is, however, not right to get angry at anything, or anyone, else, in my opinion- such as that is childish, and wrong, and a few more things that are not complimentary. Is your boyfriend still casting breath? What were his expectations, Kathy? He is living what his expectations should have been- this being contingent on his being active with his Med team for the best quality of life/recovery possible. Like it or not, and I hope you will show him this post, that is what is real.

Those who are worse-off than us are many. The MS victims in wheelchairs, or bed-ridden; or, the quadraplegics; or, etc., etc. No- acknowledging them does change our physical being, as it is, but it rightly changes our view on just how bad we've got it in life, and should offer each of us a better view of what we see when we look in the mirror. Again, the core we deal with is the Big C, and battle therewith. It was at the 09 Thanksgiving family gathering that I revealed to all that I had that C. What I told all, there, on that day, was that all it meant was I was gonna have to roll-up my shirtsleeves, re-tie my shoestrings, maybe take my belt in a notch, or two, and then find a mean-kinda grin to wear, now and then. Those were my expectations, Kathy, along with a little something else= "come what may." And, oh yeah, I did struggle for awhile to regain that grin, now and then, but that is the way of men in battle, Kathy, as I think your companion, as man, does know.


Thus, and I truly do not mean to ruffle any feathers, I must say that in my opinion there comes a time when sympathy can work to the negative, and the greater focus of caring should become less sympathetic. That is not to say you are there, Kathy, but it is something you rightly should realize as possible. There are professionals to help with C struggles- people who deal with the mental, and even the strongest of men should be smart enough to know when they need help with the battle, if they are losing said battle. Yes, it starts with the Med team of Onco/Rad and his physical condition, and whether or not improvement can be made, and then maybe your Primary Care- their jobs are to assist in the survival your companion has going for him.

Self-pity has no rightful place in this battle with the Big C. Yes, it is in the back of all our minds, including mine, but it is of the dark clouds. To fight the good fight, Kathy, and win the battle, is to recognize all the dark clouds for what they are- some can provide the illusion of comfort, but that illusion can be very negative towards doing one's best, and those clouds can grow larger with allowing weakness to fester. Your companion is a soldier in a battle with the Big C that continues, Kathy. He must realize that as fact.

And, Kathy, you must also consider yourself, and your relationship with him. He must want to help himself in his recovery. If he is truly incapable of that, then you know what's down the road he is on, ultimately. He must be willing to continue fighting the battle, as we all are- current, or post-treatment.

A Beckon Call to all- hopes and Prayers be with Kathy.

Kathy- Believe

kcass

Im sorry to say....
Kent, you write so eloquently, probably more eloquently than I am capable of comprehending.
Some parts of your post puzzled me and I read them over and over. But I get the point of most. Thank you for summoning prayers for me and us both. It is most encouraging and heartwarming that complete strangers can be so compassionate to one another.

As for my boyfriend, remember that I have the added hardship of living 8 hours away from him and do not and cannot witness all of the kinds of moments in his day. We have the phone and texting, which oddly enough came in extremely handy so he didnt have to talk alot. Even now, if he speaks too much, his mouth becomes all gummy with the mucous.
Im sure he will not read the post, but he is patient enough when i tell him things that I have read, or suggestions that I have read. As of late he did become not so welcoming with suggestions, but Im sure that after spending so much money, and time, on suggestions for feeling better, I would guess that one couldnt care less about yet another suggestion. Im thinking one would need to take a break from suggestions. He is stubborn, grouchy alot, & serious just in his general personality, so Im sure a meltdown at times regarding more suggestions from others would be sort expected. Not liked, but expected. Im sure he has wanted to tell me where the next suggestion could be put as well!

My point is that he can **** all he likes, whine and complain all he likes, but at the end of yet another day, he knows he has to leave it all to God, who he does have a relationship with. He just isnt always so happy with the journey He has him on. Maybe he has/had bigger expectations of his recovery, maybe not, but in the longrun it is only him that will have to face his recovery shortcomings and whether they are permanent, or temporary or both and how he handles them.

My support is from 500 miles away, a very long 8 hour drive. So he basically is on his own and has no choice but to help himself with this recovery, as he did with other physical maladies he has experienced as a single person for the last 10 years. He is very capable because there is no one in his immediate vicinity to do anything for him at least no one that he will bother. He knows if he doesnt do anything to help himself, it wont get done. He lives alone. So he does what he is supposed to. He really would just like to be able to enjoy the act of eating again, and he is just not there. Everything has lasted much longer for him than he was lead to believe by his team. Like others have said, sometimes all they can say now is, Youre doing great!! And they do, they say they are very happy with the way everything looks, so much so, they didnt want to do a PET.

I know he will do it, Id like to see him have more patience, but he is how he is, and has NEVER been a very patient person to begin with. Its just hard to be on the receiving end of that impatience. You must admit, that too many cliches, and all of the I know you can do it honey, dont worry honey, soon it will be better, or Im sure your taste will get better cheers sometimes sound like crap when in the wrong mood. So in doses do I cheer.

Id like to be able to have something to say that feels like its more useful to him. But there really isnt anything to say, and he tells me that. But I dont think given the question if he would have preferred to have no one in his companion corner, even 500 miles away, Id like to think he thinks having someone somewhere in his life was way better than having no girlfriend at all.

I havent given up on him, and dont plan to. He has been my friend first for over 20 years, and more now for the past year and a half almost. Cancer interrupted both of our lives and our "getting acquainted" time as a couple. So that was an added bonus. A time when we were learning each other, our ways about the other, an important time for any couple. So many of you have been with your mates for many many years. We have not had that luxury. Our time was of only 8 months before we were forced to endure the beginning of a 3 way relationship.
In some weird way, its like I was competing with Cancer for the loving person I had, and the angry, frightened, intense person it was making him, or at least making him more often as he already was kind of grouchy and intense anyway. So although we have gotten Cancer out of his house as an unwelcome tenant, it moved on but is as close as moving in next door and just being there as a reminder, like Im not in you anymore but Im still around to haunt you if you let me.
Well to his neighbor Cancer, just know that I am very protective of your proximity to him still. I will be there to cheer him on, to try to negate the mind screwing that you or the treatment to kill you has done. YOU cannot rid me. You will NOT rid me.
I hate you Cancer and all that you bring with you. You Cancer are evil who preys on the good, but there is no room for you. Just die and stay dead.



Thanks for all the support, all of you,

K

Skiffin16

thegirlfriend said:

Im sorry to say....
Kent, you write so eloquently, probably more eloquently than I am capable of comprehending.
Some parts of your post puzzled me and I read them over and over. But I get the point of most. Thank you for summoning prayers for me and us both. It is most encouraging and heartwarming that complete strangers can be so compassionate to one another.

As for my boyfriend, remember that I have the added hardship of living 8 hours away from him and do not and cannot witness all of the kinds of moments in his day. We have the phone and texting, which oddly enough came in extremely handy so he didnt have to talk alot. Even now, if he speaks too much, his mouth becomes all gummy with the mucous.
Im sure he will not read the post, but he is patient enough when i tell him things that I have read, or suggestions that I have read. As of late he did become not so welcoming with suggestions, but Im sure that after spending so much money, and time, on suggestions for feeling better, I would guess that one couldnt care less about yet another suggestion. Im thinking one would need to take a break from suggestions. He is stubborn, grouchy alot, & serious just in his general personality, so Im sure a meltdown at times regarding more suggestions from others would be sort expected. Not liked, but expected. Im sure he has wanted to tell me where the next suggestion could be put as well!

My point is that he can **** all he likes, whine and complain all he likes, but at the end of yet another day, he knows he has to leave it all to God, who he does have a relationship with. He just isnt always so happy with the journey He has him on. Maybe he has/had bigger expectations of his recovery, maybe not, but in the longrun it is only him that will have to face his recovery shortcomings and whether they are permanent, or temporary or both and how he handles them.

My support is from 500 miles away, a very long 8 hour drive. So he basically is on his own and has no choice but to help himself with this recovery, as he did with other physical maladies he has experienced as a single person for the last 10 years. He is very capable because there is no one in his immediate vicinity to do anything for him at least no one that he will bother. He knows if he doesnt do anything to help himself, it wont get done. He lives alone. So he does what he is supposed to. He really would just like to be able to enjoy the act of eating again, and he is just not there. Everything has lasted much longer for him than he was lead to believe by his team. Like others have said, sometimes all they can say now is, Youre doing great!! And they do, they say they are very happy with the way everything looks, so much so, they didnt want to do a PET.

I know he will do it, Id like to see him have more patience, but he is how he is, and has NEVER been a very patient person to begin with. Its just hard to be on the receiving end of that impatience. You must admit, that too many cliches, and all of the I know you can do it honey, dont worry honey, soon it will be better, or Im sure your taste will get better cheers sometimes sound like crap when in the wrong mood. So in doses do I cheer.

Id like to be able to have something to say that feels like its more useful to him. But there really isnt anything to say, and he tells me that. But I dont think given the question if he would have preferred to have no one in his companion corner, even 500 miles away, Id like to think he thinks having someone somewhere in his life was way better than having no girlfriend at all.

I havent given up on him, and dont plan to. He has been my friend first for over 20 years, and more now for the past year and a half almost. Cancer interrupted both of our lives and our "getting acquainted" time as a couple. So that was an added bonus. A time when we were learning each other, our ways about the other, an important time for any couple. So many of you have been with your mates for many many years. We have not had that luxury. Our time was of only 8 months before we were forced to endure the beginning of a 3 way relationship.
In some weird way, its like I was competing with Cancer for the loving person I had, and the angry, frightened, intense person it was making him, or at least making him more often as he already was kind of grouchy and intense anyway. So although we have gotten Cancer out of his house as an unwelcome tenant, it moved on but is as close as moving in next door and just being there as a reminder, like Im not in you anymore but Im still around to haunt you if you let me.
Well to his neighbor Cancer, just know that I am very protective of your proximity to him still. I will be there to cheer him on, to try to negate the mind screwing that you or the treatment to kill you has done. YOU cannot rid me. You will NOT rid me.
I hate you Cancer and all that you bring with you. You Cancer are evil who preys on the good, but there is no room for you. Just die and stay dead.



Thanks for all the support, all of you,

K

Stay Strong & Positive
Keep staying strong, things always work out eventually....

Maybe he's just a little like me. I like to gripe and moan sometimnes, it's how I deal with situations that I have no control on, at least I can "gripe" about it...spelled with a B.

All the best and keep on posting..

Good Luck & God Bless John

Mb731

naturenaw said:

Hang in there
Get ready for a long post here....
I am so sorry that you are having to reach deep to keep up the strength for your boyfriend. I know today how deeply thankful I am that my caregivers (my husband, young kids, and parents) didn’t give up on me. Hang in there!!

I have a viewpoint of both the caregiver and the patient since I have experienced both sides and believe me when I tell you this – yours is a hard job to maintain! Again, hang in there!
On the topic of positive attitude…. I think it is OK to hate cancer and to think it sticks and to think that the life of hell getting through the treatments and everything it does to your body and your life all sucks because it DOES!!

I think it is OK to be negative about all this crap. I just hope your boyfriend will have his times for being angry but also have his times for recognizing the gift of life he has been given each and every day even if life has now changed drastically.

Somebody here mentioned the tease of seeing some positive and then it disappears – well I hope you can see some glimmers of positive in there from him, some tease to keep you not giving up on him. If he doesn’t want suggestions, then maybe just be there to give him support by listening or just fill him in on your daily life and what you have been doing – distract him perhaps from his anger and his daily struggles and give him a glimmer of what can be.

When my daughter was at her worst from her treatments, I read to her and told her stories to distract her. Distraction can help some folks but take clues from him and if that is being rejected too, then keep hanging in there!

After my treatments, I am thankful that my mom kept trying to make different whipped up foods and soups and that she kept informing me of all the details my kids were going through and that my husband would still fill me in on his day when he came home no matter how grumbly I was. I am thankful that they didn’t give up on me. So thanks so much for reminding me of how thankful I am for what they have done for me!

Also, I experienced a lot of pain for a long time after treatments (maybe even worse after the treatments than during). They say radiation is the gift that keeps on giving, and the effects continue long after treatment. So when my family expected me to turn the corner and be better, it was months before that happened. I couldn’t live up to their expectations or my own. We all expected me to be better so much sooner. That can be very frustrating and I can understand the state your boyfriend could get into if he is experiencing that kind of pain and frustration. I don’t know when he will “turn the corner” but I hope it is soon for you both! Also don’t be surprised if he is better one day then back worse again. The up and downs are truly like a roller coaster rather than just going around a corner. A roller coaster in the dark, upside down, … you get the picture – you’re experiencing it yourself.

Anyone who has been through cancer(that includes all the caregivers) deserves to be negative and angry about it. We deserve to shout out at the top of our lungs (if our throats could handle it) and scream about it!

Cancer sucks.

It helped me to have my kids getting me up and wanting to get going for them every day. So somehow I hope his pain can ease and I hope he can see that all these gifts he has been given – the gift of getting through the next moment and the gift of the next moment… that they are something to make into something he wants them to be.

I think everyone on this board deserves to be angry and mad about our crap we went through and what the cancer stripped our lives of…..BUT –we also need to remind ourselves daily of each day that is given to us. Each day we wake up and face is truly a gift and what we do with that gift is our choice. The choice seems to get taken away from you when you are in extreme pain and figuring out that he can still have some choice in what he does with the moments he has been given is where it may be hard for the patient in pain. If we choose to scream and be angry, that’s our choice and we deserve it. But we also then should remember that we have been given another day, and another and another and once we re-define what our “normal” life is to a” new normal”, it’s a whole lot easier to get past the screaming and anger and realize how great life can be.

I spent months in pain and wondering if I’d ever get out of it and disappointed at myself and feeling like I was letting my kids and my husband down and wondering when I’d ever get back to normal. If I had only known that if I just re-defined what normal was, I could have gotten back to it a whole lot sooner!

Here’s hoping to some glimmers for you and hope you can find the strength to hang in there for him when it sound like he needs it more than ever!
Take care!

P.S. Humor worked wonders for me, perhaps a joke a day can help him. Humor even rhymes with tumor!

when does it end?
Wow..I have to say I am a little overwhelmed right now. My husband is just over the half way mark for his treatment of Tonsil Cancer. I guess I was being of the wishful thinking to think that about 2-4 wks after treatment things would start returning to normal. Is it true about the gift that keeps on giving? Does this pain, mucous, not being able to swallow go on for months after radiation stops??? Oh my... someone out there that hasn't experienced the "gift", please let me know.

It is a tough road and he is so frustrated with these reactions and symptoms....I just thought that the relief would start soon after the treatment stopped.

Help!!
Marybeth

Kent Cass

Mb731 said:

when does it end?
Wow..I have to say I am a little overwhelmed right now. My husband is just over the half way mark for his treatment of Tonsil Cancer. I guess I was being of the wishful thinking to think that about 2-4 wks after treatment things would start returning to normal. Is it true about the gift that keeps on giving? Does this pain, mucous, not being able to swallow go on for months after radiation stops??? Oh my... someone out there that hasn't experienced the "gift", please let me know.

It is a tough road and he is so frustrated with these reactions and symptoms....I just thought that the relief would start soon after the treatment stopped.

Help!!
Marybeth

Hope
Do hope that your husband's condition does become noticably better in the days to follow. Does take some time, and recovery is somewhat gradual. However, MB- realize there is a new "normal." Takes a little more time to get back to a state comparable to the former "normal." I am NPC- not tonsil, so understand that. There are a number of other tonsils who are active, and they can inform you better than I.

kcass

thegirlfriend

Mb731 said:

when does it end?
Wow..I have to say I am a little overwhelmed right now. My husband is just over the half way mark for his treatment of Tonsil Cancer. I guess I was being of the wishful thinking to think that about 2-4 wks after treatment things would start returning to normal. Is it true about the gift that keeps on giving? Does this pain, mucous, not being able to swallow go on for months after radiation stops??? Oh my... someone out there that hasn't experienced the "gift", please let me know.

It is a tough road and he is so frustrated with these reactions and symptoms....I just thought that the relief would start soon after the treatment stopped.

Help!!
Marybeth

Marybeth
This is just the goings on of my boyfriend, and anyone else who posts their own experience.
Everyone is different, and your husband may very well get relief soon after treatment stops.
One day at a time as I am told.....

Kathy
thegirlfriend

micktissue

Mb731 said:

when does it end?
Wow..I have to say I am a little overwhelmed right now. My husband is just over the half way mark for his treatment of Tonsil Cancer. I guess I was being of the wishful thinking to think that about 2-4 wks after treatment things would start returning to normal. Is it true about the gift that keeps on giving? Does this pain, mucous, not being able to swallow go on for months after radiation stops??? Oh my... someone out there that hasn't experienced the "gift", please let me know.

It is a tough road and he is so frustrated with these reactions and symptoms....I just thought that the relief would start soon after the treatment stopped.

Help!!
Marybeth

Marybeth
I am 2.5 weeks post treatment and I have never felt worse. Mouth sores, mucus, not sleeping, difficulty swallowing. It doesn't seem to want to end.

But I saw my Dr today and he was thrilled. He says I am doing great and now I can expect to see daily changes. He figures by May (2.5 more weeks) I will "turn the corner". I remain unconvinced. However, the only thing I can do is endure, whatever that takes.

My advice is to buckle down for the long haul and let your husband know this place is a resource for him as well as you.

Best,

Mick

friend of Bill

micktissue said:

Marybeth
I am 2.5 weeks post treatment and I have never felt worse. Mouth sores, mucus, not sleeping, difficulty swallowing. It doesn't seem to want to end.

But I saw my Dr today and he was thrilled. He says I am doing great and now I can expect to see daily changes. He figures by May (2.5 more weeks) I will "turn the corner". I remain unconvinced. However, the only thing I can do is endure, whatever that takes.

My advice is to buckle down for the long haul and let your husband know this place is a resource for him as well as you.

Best,

Mick

Turning the corner
I don't know if hell has corners but I can absolutely guarantee you can do this. I am convinced of that. Strength and courage to you. The "doing great" assessment is easier if your're the one holding the flashlight!

Vince

Skiffin16

micktissue said:

Marybeth
I am 2.5 weeks post treatment and I have never felt worse. Mouth sores, mucus, not sleeping, difficulty swallowing. It doesn't seem to want to end.

But I saw my Dr today and he was thrilled. He says I am doing great and now I can expect to see daily changes. He figures by May (2.5 more weeks) I will "turn the corner". I remain unconvinced. However, the only thing I can do is endure, whatever that takes.

My advice is to buckle down for the long haul and let your husband know this place is a resource for him as well as you.

Best,

Mick

Mick
Hi Mick,

I know you keep hearing it over and over...but you are getting really close to start feeling a little better. As you have found the healing for this comes more in the reference of several weeks instead of daily.

Even though I am almost ten months out, I still have changes going on. Not so much pain or discomfort, although I still have residual discomforts in my throat and neck at times.

My salivary functions and taste are still improving, though like I said it's weeks or even months between it seems.

You'll get there bud, you just won't notice the changes for awhile.

John

friend of Bill

Mb731 said:

when does it end?
Wow..I have to say I am a little overwhelmed right now. My husband is just over the half way mark for his treatment of Tonsil Cancer. I guess I was being of the wishful thinking to think that about 2-4 wks after treatment things would start returning to normal. Is it true about the gift that keeps on giving? Does this pain, mucous, not being able to swallow go on for months after radiation stops??? Oh my... someone out there that hasn't experienced the "gift", please let me know.

It is a tough road and he is so frustrated with these reactions and symptoms....I just thought that the relief would start soon after the treatment stopped.

Help!!
Marybeth

Pain, mucous and swallowing
Marybeth,

Don't want this to be a downer, just sharing my experience. I had lots of radition and chemo for tonsil bed/lymph node cancer. The symptoms you mention continued for and peaked at about 90 days post treatment. Then they slowly faded over time. At 17 months I still have some, but nothing like before, mucous and swallowing issues but no pain - so grateful for that. It was difficult and disheartening those first few months. I needed a few sessions of speech and swallowing therapy.I had not been prepared for any of this, so in the knowledge vacuum I created the expectation that I would start feeling better once the treatment stopped. It did not turn out that way for. But I survived. Truly the healing process for some is painstakingly slow. Looking back I think I did better when I adopted "am I feeling better than a month ago?" rather than "yesterday" or "last week." I am not a patient person so I got in my own way at times. I know that with time and putting one foot in front of another there is hope and relief for the two of you. Prayers for strength and courage are coming your way.

Vince

Mb731

friend of Bill said:

Pain, mucous and swallowing
Marybeth,

Don't want this to be a downer, just sharing my experience. I had lots of radition and chemo for tonsil bed/lymph node cancer. The symptoms you mention continued for and peaked at about 90 days post treatment. Then they slowly faded over time. At 17 months I still have some, but nothing like before, mucous and swallowing issues but no pain - so grateful for that. It was difficult and disheartening those first few months. I needed a few sessions of speech and swallowing therapy.I had not been prepared for any of this, so in the knowledge vacuum I created the expectation that I would start feeling better once the treatment stopped. It did not turn out that way for. But I survived. Truly the healing process for some is painstakingly slow. Looking back I think I did better when I adopted "am I feeling better than a month ago?" rather than "yesterday" or "last week." I am not a patient person so I got in my own way at times. I know that with time and putting one foot in front of another there is hope and relief for the two of you. Prayers for strength and courage are coming your way.

Vince

tonsil cancer
thank you all for your replies. I knew this road was not going to be an easy one but no matter how well you think you are prepared....it is just so overwhelming! I actually worked in a Cancer clinic and saw the pain and the horrible side effects but until you are living with it day in and day out...it isn't the same when it is your loved one.

The nurse told me that 1 month post most can swallow water. We may have been told about the post treatment, but honestly- I don't remember hearing 2-3 mths out with the same issues.

Oh well whatever it is will be and one day at a time. I am more positive about this then my husband but I am also not the patient. This is a horrible disease and I have to say that this is the hardest thing that I have been challenged with. I have a daughter w tons of health issues and I thought that was hard. huh! That looks so easy now....

I know that my husband is not aware of he lingering side effects. We knew that he may have difficulty swallowing and severe dryness that could last. I will just have to strong up and get prepared for that part of the journey. It is just so hard convincing him that he will make it through this.

Marybeth

Skiffin16

Mb731 said:

tonsil cancer
thank you all for your replies. I knew this road was not going to be an easy one but no matter how well you think you are prepared....it is just so overwhelming! I actually worked in a Cancer clinic and saw the pain and the horrible side effects but until you are living with it day in and day out...it isn't the same when it is your loved one.

The nurse told me that 1 month post most can swallow water. We may have been told about the post treatment, but honestly- I don't remember hearing 2-3 mths out with the same issues.

Oh well whatever it is will be and one day at a time. I am more positive about this then my husband but I am also not the patient. This is a horrible disease and I have to say that this is the hardest thing that I have been challenged with. I have a daughter w tons of health issues and I thought that was hard. huh! That looks so easy now....

I know that my husband is not aware of he lingering side effects. We knew that he may have difficulty swallowing and severe dryness that could last. I will just have to strong up and get prepared for that part of the journey. It is just so hard convincing him that he will make it through this.

Marybeth

Everyone is Different
MaryBeth, use these (our) experience and knowledge as just that "our" experiences and knowledge. But realize that everyone is different, just because some have had rougher roads than others doesn't mean that your husband will. Be prepared for the worse, but hope and pray for the best.

You and your husband will fall somewehre in between. I seemed to have had it easier than a lot of folks here, but that doesn't mean that it was easy for me. Everyone that goes through this has it rough. It's something that we have never gone through before (or at least most of us, unfortunately some have gone through it before)....

I'm sure you guys will manage and adapt, there's definitely a learning curve. Hang in there, be supportive, and fill yourselves with our experience and knowledge.

He will make it through this as will you. What choice do you have, it's much better than the alternative. If anything that I can offer you and him, is that relief, pain, salivary functions, taste, swelling, fatigue, etc. don't improve on a daily time frame, it's more likely going to be in weeks and months. Nothing that is severe, it just kind of lingers, you'll notice changes, but they are very gradual....

God Luck, and God Bless,
John