Get over there and tell them that!

Really!

I agree with Tabitha. 

You need to do this not just for the present but for your future well being.

And a little practical advice, push his medical team to give you the resources you need to make this happen. 

GO THERE.  you need to just go there.

drop everything and go there.

MistsOfSpring - I hope you are or will have the opportunity to share your feelings with Jim.  It might not change anything . . . he might still want to be at his Dad's, but at least he will know how you feel and what you want and what you need.

Hope, peace, joy, love . . .

(((((mists)))))

Everyone else involved in Jim's care needs to hear that.  It is a perfeectly normal, natural and acceptable wish.  From what you have shared I suspect that his parents will object.  For your own well being and emotional safety HAVE SOMEONE ELSE WITH YOU when you talk to them. It would be best if this 'someone' is a Social Worker who knows the case, a nurse, a mediator, a minister skilled in helping people during tough times  (most hospitals have a a variety of spiritual caregivers - but I can't recall what they are called right now).

Proceed with determination, an open heart and caution.  No one has a right to blackmail you emotionally, to place unfair blame on you for Jim's illness, to force you into a living situation that you had no choice in.

Get hold of someone trustworthy and willing to listen and help.  Gather information and do what has to be done.  You DO have Power of Attorney I assume?  You are listed as Next of Kin I assume?  Having these in place will help to point out that you have a stake in the decision making process.  Jim is YOUR husband, his home is not at his Dad's house, his child needs to see him more easily and without a long drive.  Your friend's need to be able to help support you.   

I'll continue to hold you in my heart as you walk along this part of your journey.

Mists I agree with all of the others, but I was wondering, is this the first time that you have experienced the possibility of death with someone so close to you? It can be daunting and fearful, not knowing what to expect and it's probably the same for Jim. It sounds like you both need each other right now....and it's okay to be afraid and strong together at the same time. There's no script, just being present sometimes is enough.

HUGE HUGS!

Yes, Waterfall.  My experience with death is very limited.  I haven't even known very many people who died...some neighbours, a few school acquaintances, the parents of a couple of friends, a boss, a former teacher...the closest people to me who have died were my grandparents.  My grandfather died when I was 20 and I cried once, more for the whole experience and our strained relationship than for him.  When my grandmothers died I was in my 30s and they had both had good, long lives at 84 and 91.  I was much more concerned for my parents than for them or myself, plus each of their deaths took place as I was moving forward in my life in a big way, one just weeks before I got married and the other when Rachel was a baby.  I feel a mild sadness that they are gone and I miss them, but neither death was unexpected, we weren't very close emotionally and I was happy for them having lived long enough to see grandchildren and for one of them great-grandchildren.  The death that has probably affected me the most up until this point in my life is my baby turtle, Fleance, when I was 20.  I certainly cried over Fleance far more than any of the people I've known who have died, but even there it wasn't an overwhelming,devastating feeling, and I'm sure I was pretty much back to normal in a week or two.  It's not just fearful right now...it's terrifying.  I've been terrified of losing someone I love for my whole life.  Just the thought of someone I care for being killed has been enough to reduce me to tears.  I have spent my whole life avoiding the thought of it as much as I can.  I HATE DEATH.  I'm trying to talk to Rachel more about it, especially since I know I've hardly said a word to her about it before now and she needs to understand at least a little bit, although I haven't talked about death in relation to Jim with her yet.  I've mentioned my grandmothers and told her stories about them and how wonderful they were, and I've told her about Fleance and the other turtles, and I've told her about heaven and angels, even though I really don't believe in that, just because she's 5 years old and if her Daddy dies I think she needs to believe he's in a beautiful place.  She can question and search for her own answers later, but for now I want her to have as much comfort as she can have.  I know I'd be comforted if I had unwavering faith that Jim would be waiting for me on the other side of big pearly gates.  I've always believed it was best to question and search for the truth, but now I'm starting to wonder if the Born Again Christians have a better answer.  How much does it matter to be scientifically and logically right when it strips away that blind faith that everything will be ok?  (That's not really a question...just a thought in my head right now.)

Mists - I agree with everyone above.  As someone who lost a husband to cancer, you need to spend quality time with Jim now.  You need to tell him how you feel, or you will live with regrets that will be emotionally crippling. 

Take a trusted person with you - nurse, social worker, friend - and go to see Jim and tell him how you feel.  His parents need to hear this as well.  They need to know how much you are hurting.  Maybe it will be a wake-up call for them.

Ah Mists, everything makes sense now. I'm sure everyone was wondering why you didn't just go and bring Jim home, but doing that brings home the strong possiblity that your husband may die with only you and  Rachel present. Believe me, I understand that this can shake the strongest amongst us. Everyone is vulnerable when our hearts are being wrenched by losing a loved one. I remember when my mother was dying how I tried not to stay too long at the hospital in case she died while I was there. I was seventeen and was very afraid and scared. I heard about my mothers death from a knock at the door at one o'clock in the morning, from a United Church minister that came to tell my Dad. Instead of my Dad or any of her children being present, it was her sister that was there at the moment of passing. Sometimes I think I could have done things better, but other times I think that the universe and God has a way of unfolding the way things are supposed to happen. It may just have been what was best for my mother.....being with a sister that was able to help her pass peacefully into the next journey we all will encounter.

I like that you are talking about all this with your daughter, it may be best to stay with the truth of what you know and even what you don't know. Kids are pretty perceptive, they don't always need a "story", just honesty. One thing you do know for sure is that death ends all suffering and just as Rachel will come to terms with how she handles this, so will you........in time, it's a process and it's not instant.

Mists, I can tell you are one amazing, caring, sensitive woman that wears your heart on your sleeve, this is going to be one hell of journey but as long as you want to talk, I'll listen.

wishing you courage and strength......

Mists

(Someone wrote that you are afraid of death, hence my response here)

The pallative care dr.who came to our home  to see my very ill  husband weekly during his last 6 weeks of life explained to me what generally happens at death. The person is in sort of an unconscious state not eating or drinking, not talking,  bowels not moving,  sleeping a lot the week prior to death and on heavy intravenous drugs, morphine in my husband's case. We used  mouth swabs to keep his lips and mouth wet and comfortable. He did moan occasionally. I rubbed his head and said I loved him but I couldn't  get too close because of the hospital  bed he had  and the rails. My daughter stayed beside him for  the last  week by his bedside with his hand on the bedrail and hers on top of his. I read that grabbing onto a bed rail or someone's hand very tightly by the dying person   is a reflex action  becasuse the brain isn't working 100%. The patient will grab tightly and be reluctant to let go.

At death there is some heavy breathing which does not hurt the patient. The patient feels nothing the dr. said. There can be  chest rattling or cough which is cared for by sort of a gravol pill,,,?...not sure, some pill placed behind the ear which stops chest gurgling  totally. There was no throat or lung noise.

In my husband's case there was a surge of life which is common just prior to death at 8 a.m.  He asked for apple juice and to open the window. He managed to roll over in his high tech. hosp. bed ( air bed - battery operated)    by grabbing the bed rails edging towards myself, my daughter, and my grandson,12, who were sitting on my bed beside his in our bedroom.

He took perhaps no more than 20 deep breaths. His face changed and became very serene and peaceful as he made his transition. He was gone. He had been looking up. Earlier in the week  he had spoken a bit in German ( his deceased  parents language)  which he seldom spoke. The dr. said the patient may see relatives who have passed away and this is fine, don't say anything about it to the patient. We had done all the necessary talking to him earlier and I gave him permission to go telling him we would all be O.K.

This is just my experience and I'm sure it can be different for each person but it may be of some help. I knew nothing about death. I was not afraid. He had been ill at home for about six months with dr. and nurse care the last six weeks. He passed at 8 a.m. My daughter and I washed his body and waited until 2 p.m. when a dr. came to verify it.   A coroner wasn't necessary. After the dr. left we called the funeral parlor. I remain totally amazed at how calm we all were, no hysterics. I believe we were prepared and we had already been in mourning because his illness lasted about 6 mos.prior to his passing.

If my writing or grammer isn't perfect Mist its because this is a bit hard to write.

Love and Hugs to you all. You are in my thoughts and prayers.

I was reading the OP again. I just wanted to say I believe my husband's whole body was very sensitive to the touch with a very bad bedsore on his pelvis.His right foot  was really hurting also, nerve pain.   A support worker was bathing his legs and that hurt him  altho' I believe his pain was very well managed with morphine and oxycodene. ( He had pelvis bone cancer after having his bladder removed earlier.)

What I'm meaning to say is that he didn't like to be hugged or cuddled  etc. for these reasons. In our own bed before the hospital bed came it would hurt him if I moved a little bit. I lay perfectly still at the far edge. I couldn't sleep on the couch so it was wonderful when the hospital bed arrived .One hospital bed was hard and ordinary so we had to exchange it  for one with an air mattress (run by a machine, circulated air)   which provided more comfort at certain pressure points on his thin body. We had a friend come in to lift him on to the bed twice.

I would also like to say if he has normally put his best foot forward and he has been strong for you in his life he may not wish you to see him being so ill and vulnerable. This was the case with my husband. He never admitted to feeling weak (although he didn't have the strength to move) so you can imagine. He seemed to believe he had to stay strong and stoic - sp- for me. He was happy to let our daughter (40) care for him more so than myself. She was working so it was rather difficult for her.

Hi again Mists

I've got a blog going here. I don't know if  you're familiar with this old hymn. I like the old hymns. I pray it may bring you courage and strength as you face the unknown in the days ahead.

Hold on My Child.....Joy Comes in the Morning

Mists, any chance of getting him into the clinical trial?  Perhaps you need to be more aggressive.

Please forgive me if my advice sounds callous, I have never been your situation.  

I truly feel terrible for you, and wish you and your family every bit of goodness you can get, and keep you in my prayers.  I will light a candle for you and another for your husband tomorrow in church, as usual.

Big virtual hugs at this very difficult time.

It is great that there are so many people here at Wondercafe, many with far more experience in this area.  I hope the sharing helps you, even if it is just a little.

The clinical trial...that's what I'm working on right now.  I'm trying to print articles from medical journals online that detail the benefits and show how the side effects are not as bad as Jim's dad fears.  My printer hasn't been cooperating...it won't print pdf files.  The clinical trials nurse called Jim there the other day and his dad said that Jim was too weak to come to the phone.  I happen to know there is a phone right next to his bed...he doesn't even have to sit up.  Even if he was sleeping or throwing up or feeling really, really horrible, his dad never gave him the message.  Jim was feeling well enough yesterday, but his dad never told him about the call.

I'm just so angry and frustrated right now.  The choices that led to this point made sense at the time.  We counted on the fact that his dad was a doctor because he'd understand better at Jim's appointments.  His willingness to go with Jim meant that I didn't have to use my dwindling sick days to go.  I wanted to go, but I knew I might need the time later to help Jim.  Then he stayed there for a week or so after surgery to recover and it made sense because someone was there all the time, but at home I'd have to go to work.  It made sense for him to stay there during the week for the interferon treatments so he wouldn't have an extra hour and a half of driving every day and so the volunteers could pick him up and drop him off.  He also had someone there all the time again to help him if he was feeling weak or sick. 

But then when the interferon stopped and the cancer spread, I was just pushed out.  They decided he was better off there and kept telling him that.  I didn't want to push him to come home because I knew he wanted to be close to the hospital and I knew he felt comfortable with the nurses coming and everything being done already.  I knew moving him would lead to more stress for him.  What I didn't know what how much power his father and stepmother would have over all the decision making.  Then the attacks on me personally started...I hadn't taken care of him well enough, I had abandoned him when I went up to visit my parents in the summer, I had let our house pile up with garbage for months on end, I wasn't providing Rachel with a normal childhood, and everyone's heart was breaking and it was all my fault. 

I'm scared of them.  I'm scared of confronting them about this stuff.  I know she will belittle me and tell me repeatedly that I don't know what I'm talking about, and I know she's wrong.  I'm trying to get my evidence together so they can see the truth about this drug in a way that they will believe because they won't listen to me.  If it came from the internet, it must be wrong.  *sigh* 

I need strength to bring all of this up.  I need strength to not be shouted down.  I don't know if Jim will choose to do this or not and I don't know if there is time left or not and I don't know if it will work for him or not, but he needs to have a chance to decide and they aren't giving him that. 

What about Jim's oncologist? Could you get an appt with him/her and explain the situation? It is insane that you have to print stuff from the Internet, Athena seemed to know right away about this drug.
Because she is young she knows and Jim's dad, no matter how good of a doctor he was, is not up with the latest in this fast changing area.
I cannot believe his father won't listen to Jim's doctor about the clinical trial.
It is very hard, Mists, do you have a sibling? Is his mother alive? You need someone there with you to help you confront his father. To stiffen your spine, as it were. To go with you.

I contacted Jim's doctor's office and left a message explaining the situation.  Two days later I hadn't heard back from him and I called again.  His secretary said he didn't want to get involved in family matters.  Meanwhile, he's spoken to Jim's dad on the phone previously about the interferon, even though I'm listed as the primary contact and I'm the only one other than Jim that he's supposed to talk to.  His dad has also commented that the oncologist was probably only leaning towards this clinical trial because he'd be making money off of it.

Jim's mother is probably at the root of his father's reluctance to listen.  She died about 15 years ago of cancer.  She was in a clinical trial and they didn't like the way she was treated...as a guinea pig instead of a person.  He has also said that he thinks she kept trying for the family even though she was suffering and he doesn't want to put Jim through that.  He's given up without the most accurate, up to date information and he doesn't want to listen.  He also has his wife, Jim's stepmom, telling him for weeks that Jim has suffered enough. 

Believe me...I have no interest in Jim suffering.  He's been through Hell.  This drug could make him feel better and lengthen his life at the same time, if it isn't too late.  My parents are coming on Monday and they will come along to see Jim and his dad.  I need someone to help me, even if it's just moral support.  Also, one of my parents could hang out with Rachel since I don't want to have this conversation in front of her.

Mists I strongly feel it's not about"evidence"it about who loves Jim the most! At least in his dad and stepmom's heart. When he is with them they can make the decisions and that is part of the whole problem.

You need the courage-with another person with you-to speak your truth.

Jim needs to be told that his dad refused to put the nurse's call through to him and did not tell him about the call.

Make a doctor's appointment with oncologist (or just clinical trial nurse). Call as you are leaving and then take Jim there. Just the 2 of you. See where life goes from there.

One reality I can see is that Jim may very well die without coming home.

With cancer you don't get stronger!

You posted while I was Mists.

Mon with your parents sounds like a good plan!

Oh mists, what a situation you and your family are in. My mother did of cancer, and her situation was much like what stardust described above. We were so grateful to have good relationships with her partner, and within our own family. Of course, there were quirks, and things we didn't like, but they were very minor compared to what you are describing. Cancer is bad enough when things go well. I cannot even imagine what it would be like in your situation.

I would suggest you talk to the social worker at the hospital. S/he can be a support to you and Jim, and can help you connect with resources. She SW can also help you with Jim's dad. Is JIm's dad part of the medical community where he lives? If so, that might be one reason why talking to the oncologist didn't work out.

I hope you can find support. If you aren't able to be with Jim during this time, and if he dies, you will have regrets and the grieving will be far more difficult than it needs to be.

My prayers are with you.

You're very brave mists. I feel deeply for what you're going through, though I have never been through this myself. The prospect of losing someone close, just thinking about it, is so painful. I feel your pain coming through in your posts. I lost a  dear friend of mine six years ago now. It was not like your situation, she a close friend not a spouse that I had made a life with, but what was similar is that her family didn't really let anyone in on what was going on, and she was close to her friends, but they didn't aknowledge that. They kind of locked her friends out (and they had always been like that--years before, I was maid of honour at her wedding, but her mom didn't let me have any photos--they were for immediate family only, she kept the negatives, it was pre-digital--so my friend had one copied behind her back to give to me). Her friends weren't family as far as her parents were concerned, but they were to her. She was like a sister to me. She passed away and I didn't get to say goodbye, or have closure, and it really hurt...and i had regrets, regrets that I not said something to her mom sooner about how I felt-- that I didn't express or know how to deal with at the time. Anyway, I mean in no way to minimize what you're experiencing because it's not the same.  I know you are hurting though, and I feel for you.

If I were in your shoes, I would try to be assertive and let Jim's parents know how you feel and that you need to be more involved and you need them to let you be more involved.

Also, is there anyway you could contact a credible doctor (s), wherever they may happen to be located (even if it's not local), about this drug and have them discuss it with Jim's dad or contact him directly with information? I don't know if that's realistic or helpful, just a thought.

My heart goes out to you.

Mists, I'm so sorry to hear that these events are happening in your life. Although I have no experience with the death of someone close, I do have prior experience with domineering in-laws. In my case, among other events, one group of them were staying with us when one of my daughters was born. It was terrible having someone else take over the agenda and, 20 years later, I still carry it. 

I can appreciate that Jim's doctor may not wish to get involved in a family matter but he already is, by virtue of treating your husband. You have the right to insist that you are the only one, besides Jim, to get information and to make decisions. Believe me, I know it's hard to set the boundaries when someone is so strong in their disapproval. I have no advice on how to do it, but I believe that you know in your heart what you want and need to do in the days ahead and will find your way as you go...

Please know that my heart goes out to you and your family.

Actually, that's not true in Ontario - who gets info is up to Jim, not anybody else, as long as he is legally capable of making personal care/treatment decisions.  The physician making recommendations is the one who finds the patient capable or not.   In fact, physicians (and other health care providers) cannot actually legally speak to anyone about a patient without first obtaining the permission of the patient. 

In high conflict families, this confidentiality situation may even be more rigidly adhered to.  I have certainly dealt with families where a spouse is excluded from medical communication at the direction of the patient, for a variety of reasons.

Yes, of course it is the patient, provided he can speak for himself. I really think you need to get firm, Mists, as I am afraid you are right about the father, who will be thinking back to the old experience, which may have been quite awful.
To repeat my daughter's message (she is a 33-yr old surgeon)
------------/
However, there is a new and very promising drug that has just been approved in Canada for treatment of metastatic melanoma, this may the one she is referring to. If so, and I would most definitely recommend going on it. Even if it's a different drug, any clinical trial is better than no treatment. No treatment in metastatic melanoma is death so why not give it a try. This is why clinical trials are tested on patients with metastatic disease, they have nothing to lose because the outcome is poor without it. It seems really strange to me that a physician (his dad) would not understand this concept? And it seems funny that he thinks he's going to just get stronger since it's the cancer that's killing him and he's getting no treatment. Melanoma doesn't just get better on it's own?
----------------
She specifically says it is new and very promising. She clearly thinks his father is irrational.
Even if he did react badly to the trial, he could just stop it. It would appear he has nothing to lose and possibly something to gain. Try to find someone, a friend, anyone at all, who will go with you. I know how hard it is to deal with overbearing people.
Think...think... there must be someone....

Meanwhile, hugs and prayers!

Mists, Reading over the last few threads...what EO says about finding someone to go with you. Maybe Jim's dad is being irrational because of his own fears and someone who is not as close to the situation could be a voice of reason?

Hugs Mists

Hi MistsOfSpring,

As Jim's wife that is your right.

As others have pointed out it isn't us who need to hear this, nor is it us you need to tell these things to.  These are things you need to be telling Jim.

Now to be blunt.

You want to do whatever he need you to do.  Are you able to do whatever Jim needs you to do?  What is it that Jim needs you to do?

It is understandable that you feel shut out of his life.  You are being shut out, at least to some degree and I doubt that is entirely the fault of Jim's parents.  Jim is an adult and speaks for himself.  Why Jim would shut you out is something I cannot answer.  I suspect he knows you and your relationship with him better than any of us do.  Quite possibly Jim is shutting you out due to some misguided effort to spare you.

My biggest concern, pastorally, is that this is something that all of you should be dealing with together (as in side by side) and not alone in pieces.

The answer to this question is beyond my ability to give.  There are easily a hundred possible answers and each of them has some validity.  I believe your need to be with your husband should be paramount.

This may be more of the same.  

There are some pains that you cannot prevent.  There are others that you can.  Your husband loves you and for all the fear and pain in both your lives at the moment there is most likely no place that he would rather be than at your side.  If you tell him that you need him there and he has the abilty to speak so that his parents will listen then he will make sure that you are together.

Too true.  You can't.  What you can do is make sure that he doesn't die alone.  His parents will be there for him.  That doesn't mean that he is not alone.  You are his wife, he severed ties with his parents to be bound to you.  When you are not with him he is alone.  As alone as you are without him.

You should.

More important than having him back is having him present.  Either he needs to be there with you or you need to be there with him.  The where you are together is not, I think, more important than you being together.

Grace and peace to you and your family.

John

I believe I read upthread, that Jim's mom died of cancer, and that was one reason for his father's behaviour. My mother died of cancer around the same time. Last summer, I did a two day cancer walk. I did some reading, and learned that cancer treatment has come a long way during that time. The cancer that killed my mother has a far better survival rate.There are treatments that hit the cancer cell directly.Bottom line is that cancer treatment is far different than it was 15 years ago. I hope Jim can get in the trial.

 Mists, it seems to me from your posts, that Jim has made his decision to remain at his parents for the time being.  If he wanted to be in his own home, he would be there.  Can you find a way to lovingly respect this, although it is not what you want for yourself?   

As you write about your engagement with his parents, it seems your activities & attitude may contribute to an atmosphere of conflict for everyone, including yourself and Jim.  Continuing in this vein will quite likely result in a lifetime of bitterness and blame, and possibly the loss of relationship between Rachel and her grandparents, all of which would be quite sad, IMO.    

My prayer for you is that you find the grace to put down the weapons of conflict, turn off the computer, open your heart and focus your attention on becoming a calming, loving presence in the life of your husband and daughter. 

Namaste – meaning ‘The spirit in me respects the spirit in you’.  C.

carolla, thank you, I agree with your post,

Mists

I'm so sorry. I'm also reading carolla's post and thinking if there is a lot of in family battling and disagreement it isn't going to be good for Jim, yourself, Jim's parents, Rachel, or anyone in the long run. However, I understand your dilemma. Sorry I just can't see through the fog to be of more help.

Sending a bit of soul food

I have never been anything but lovingly respectful of this.  I asked Jim where he wanted to be when he first stopped the interferon and he said he wanted to stay there until he was off the IV pumps and feeling stronger, then he wanted to come home.  When the IV pumps came off, I asked how he was feeling about coming home and he said he wanted to stay there until he was stronger and then come home.  He hasn't become stronger; the assumptions that were made at the start aren't true anymore.  Now he answers any question with "I don't know" or "I guess."  I have still not pushed him to come home.  I have not tried to get him home at all, as much as I want him here.  I want it to be his decision, but he's stopped deciding anything at this point. 

My engagement with his dad and stepmother have been pleasant except on occasions when she has launched unprovoked attacks on me.  In the first I tried to defend myself, but got no where.  In the second in front of Jim in the examination room I started to defend myself, then stopped and told her we should not do this in front of Jim.  She continued and I turned my back to her, refusing to engage at all as she told me in no uncertain terms that it was my fault that all of this was happening because I didn't take good enough care of Jim and belittled me for taking time off work.  I have continued to take whatever she has dished out as if she was serving me ice cream instead of anger for the sake of Jim and his dad. 

Regarding the relationship between Rachel and her grandparents, I always wanted her to have a relationship with them.  I sometimes suggested to Jim that he should call his dad and we could get together but he never wanted to.  Although their home is only about 45 minutes away by car, they have seen Rachel about 3 times a year since she was born.  They would invite us to formal family gatherings at Christmas or Easter and proceed to spend most of their time talking with the other adults there, paying attention to Rachel for the hello and good bye kisses only.  It's become slightly more than that now that she's older, but not much more.  Jim was willing to invite them to our home for Rachel's birthday parties, but they only attended 3 of them.  When we tried to make arrangements for them to come visit on another day, we were told "No, we'll just send the gifts with John" (Jim's brother). 

Jim almost never calls his dad and his dad certainly almost never called us over the past several years.  When his father did call and I gave Jim the message, I would be bugging Jim to call back 3 days later and he still didn't want to.  Jim once did a bunch of work for his dad and he had been promised $150 for it; when his father never got back to him with the money, Jim never asked for it because he didn't want to talk to his dad about it.  When Jim got sick he told his brother and his brother told his dad.  I think we were both shocked when his dad wanted to go to the appointments and be involved in things.  I had never seen anything more than a cordial relationship between them. 

I know very little about Jim's childhood and what things were like for him growing up.  He has generally said that he doesn't remember much of it.  I know that he was close to his mom and that she had a drinking problem.  I know that he and his brother usually got along ok, but that they also had a very physical relationship with lots of wrestling and stuff like that (probably fairly typical for brothers so close in age).  He has never said anything about what his dad was like when he was a kid.  I know his dad taught him things, like how to bake some things and how to do electrical repairs.  I've heard a few stories from other sources of his dad losing his temper; in one case Jim was about 17 and I was told that his dad was yelling so loudly that he could be heard throughout that area of the hospital.  Jim had apparently not handed in an assignment on time. 

Anything beyond these facts is speculation.  I will tell you, though, that when Jim and I first met he could be shaken to the core over any kind of disagreement or criticism, no matter how small.  He would go along with anything I said, no matter what he thought or felt personally about it.  Whenever serious topics came up, he would retreat in to himself and become unresponsive.  I've compared it to watching him become a statue...he would be perfectly still and not even blink, although sometimes he had slight shivering.  It was like a scared rabbit being caught in the open.  Sometimes he would curl up in to a ball.  This is what he's doing now when I ask him a question most of the time.  When he has said yes, a few negative words from his dad are all it takes for him to curl in to that ball again and say "I don't know." 

It has taken years of gentleness and coaxing to get Jim to share his opinions without fear of anger or "being yelled at" (that's what he's called it whenever a negative comment is made to him, no matter how nicely phrased or how small the criticism.)  I've learned through trial and error to ask him what he thinks before offering my own opinion because if he knows my side, I'm less likely to hear from him.  I've learned to give him a few days to think about it because he feels trapped when he has to decide something on the spot.  I've learned to present options to him very neutrally.  I've learned to converse with him through e-mail and MSN chat when discussing more serious, important decisions (I'd be on the main floor and he'd be in the basement) because he feels more comfortable typing than talking.  Jim has a relatively severe anxiety disorder related mostly to social interactions.  Jim doesn't use the phone, not even to order pizza.  Jim doesn't haggle over the price of a car he's buying.  It's only been recently that he's been able to return items to stores without anxiety.

I've continued talking to him in the gentle way that I have used in the past to elicit his opinions, but he's not responding.  He's curling up in a ball and saying "I don't know" to everything right now.  What is the difference between now and anything else during the 10 years we've been together, 7 of which in the same home as a married couple?  His father and stepmother are vocal about what they think he should do, telling him repeatedly that he's better off staying there and that he's took weak to try the treatments.  Once again, I'm speculating...but I believe that Jim has been conditioned through his upbringing to do what his father tells him to do.  I believe he's learned to suppress his own feelings in order to do what other people want instead.  When faced with a situation in which people want different things and he's the swing vote, he falls apart. 

Conflict terrifies me, almost as much as it terrifies Jim.  I'm a mouse.  When faced with a challenge in which I have to fight, I feel sick.  I am doing everything I can to be both loving and calming for Jim and Rachel.  I know I have no way to convince you of this and in the end it doesn't matter what you think or believe about me. 

Athena has told me about doctor's with "anger management" issues. They "think they are God.". She strongly disapproves!
------
Clearly the man is being irrational, based on the bad experience he had earlier. No doubt he thinks he is doing the best for his son. But more modern medical opinion may not think so and he is too arrogant to consider it.
----- My prayers are with you to find the strength to deal with this. It's not much but it's all I've got.
I will also pray for his father who must be hurting badly.

That's true in BC as well - however, we do have mechanisms in place to permit better involvement of those appointed prior to or in the early stages of illness. That way, no doubt is left as to who makes decisons and where people are, etc, especially when power is being exerted.

In fact, in my experience, confidentiality is being taken to extremes, to the detriment of many people. Much of it is an over-reaction, not the true intent of privacy legislation, etc. I see this in my work everyday and also have seen it when my adult children were patients in hospitals. In the latter scenarios, explanations about discharge plans, follow up and medications were given to both when they could either not assimilate or remember the information. On numerous occasions with my one daughter, after the fact, I would be told that she had been advised of something, which she had no memory of and therefore, could not follow the instructions. Had they informed me, as she agreed to in writing, this wouldn't have happened and would have saved her an re-admission to the hospital.

Mists, I have no doubt that you have made every effort to keep everything as calm as possible. What I'm hearing is that you don't believe your husband wants to be there but he doesn't have the strength to deal with it, especially in light of his history. I wonder how you can get to a place of resolution and peace in these circumstances and will continue to hold you all in the light...

I am not sure if you are still on a leave from work or not. 

if you are, I would head to Jim's dad with pillows and blankets.  Have a discussion with jim about coming home to be with you and Rachel. 

then let your in laws know that today is the day.  That you have already contacted home care ( though if he isn't taking treatment and the incision is healed I am not sure what home care he is using now)

Pack him up with a thermos of tea or a bottle of water, some mints for the car, a comfy pillow for either the front ot back seat and head home.

Once home you can have a discussion about what future treatment he wants to persue and if none then you have a time line for the future.

It is March break.  There is no better time than now.  You are home, Rachel is home and it is time.  With out treatment he wont' get stronger, only weaker so today is the day!!

Wishing you peace as to how you proceed in this difficult and challenging situation you are in MistsOfSpring.

I think you are visitng Jim today with your folks. Follow your heart  and do what yuo can live with!

I think this is the bottom line. Terminal or potentially terminal illness is bad enough to deal with. Following your heart is the best choice. No matter what you chose to do will have consequences. If you follow your heart, you will be more likely to handle the consequences of your choices.

Sending warm, caring hugs and prayers.

I visited Jim today, but I went on my own.  I decided to try to talk to him directly one more time.  He was very lucid and alert and intelligent.  His feelings on the treatment are that he doesn't think he'd be allowed to participate in it anyway because he's not any stronger than he was a month ago.  His doctor had said that he'd need to have all the interferon out of his system and not be dealing with those side effects so he'd be stronger to be able to participate.  Jim and I differ on our interpretation of what that means.  I think it was specifically about the interferon and not having that drug and the problems of the drug in him while starting a new treatment...he thinks he needs to be stronger in general.  The clinical trial nurse said that he'd need to be able to get up and take care of himself, like showering and stuff.  He's still doing that.  His nausea has come back with avengeance, though, and he can't keep liquids down again. 

His dad and stepmom said they think he's only got a few weeks left.  They have based this on the fact that the palliative care nurse said that if you see someone go downhill in a matter of weeks, they usually die in a matter of weeks.  He's had no actual assessment to see how bad things are.  It's all just guessing.

As for coming home, he wants to protect Rachel.  He still wants her to visit him there sometimes, but he doesn't want her to see him like this all the time.  He also said that right now the nurses and doctor are working to deal with his nausea and help him get that under control and he doesn't want to leave in the middle of that.  I told him that if we don't have much time left that I thought we should spend it together as a family and that I could still organize things here if he wanted me to.  He said he'd think about it. 

I'm glad he finally told me what he's thinking.  Maybe he couldn't before because the other drugs were clouding his mind.  I don't like everything he had to say, but at least I feel fairly certain that it was really him saying it.  I do still believe he's healthy enough to do the treatment, but he doesn't and I don't know what, if anything, would get him to consider actually being assessed by someone in the trial to know for sure.  So...there's pretty much no hope left on that.  Maybe I should have been more forceful earlier when he was a bit stronger than he is now.  I don't know. 

I'm second guessing everything.  I wish I had insisted that he go to a dermatologist years ago...he has so many moles and I had commented on melanoma in the past and how we wouldn't know if he had it or not.  I wish I had noticed this mole on the back of his leg a long time ago.  It's such an awful spot for a melanoma to develop.  No one sees the backs of their thighs and I'm guessing that no matter how intimately acquainted two people are, that's not usually an area that gets much attention.  The only chance I really ever had of seeing it was when he was getting out of bed or getting dressed and facing away from me, and I'm incredibly nearsighted.  Without my glasses on, I'd barely see his legs, let alone a mole on one of them.

What if we had said no to the interferon?  His doctor didn't want to give it to him...it was his dad who pushed for it.  Then he wouldn't have been at his dad's house and he wouldn't have gotten so sick from the side effects.  Maybe then I could have taken him to the oncologist when we noticed the first new lump developing and he would have been perfectly fine to go on the vemurafenib.  I feel like there are so many mistakes that have been made, all of which made sense at the time, but which have led us down this horrible road. 

You can second guess yourself forever and it does no good.

You have to put that behind you and move forward.

I personnally think he is wrong about Rachel.  The time left with her daddy is valuable, even if he is ill.  However it isn't my opinion that counts.

I wish you well and think of you often.  I hope you get him home.  I hope he gets to spend valuable time with Rachel and you.

MistsOfSpring - please don't torture yourself with the second-guessing....these are things you had no way of knowing, and the end result could be the same anyway.

I did the what if's with my husband, and its self-torture.  He was having some abdominal pain, went to 2 doctors who gave him meds for indigestion, neither of which helped long-term.  Finally a discerning locum suggested a fecal test, which showed blood in the stool.  By that time the tumour was huge and the cancer had spread.

Sometimes life is crappy...no doubt about it.   Jim's wanting to protect Rachel is understandable.  I guess you need to respect that, but do make certain you take her to visit as often as possible.  I'm glad you had a chance to talk.

Prayers for you Mists.....wish I could be more helpful. 

If you do much reading about children and death you will read about the need to both protect and be honest.  Children who are shielded from the parents condition become shocked at the death.  Children who participate in the final weeks and months have more understanding and less fear.

No matter how weak he is, is can watch movies with her, or at least in the room.

She can cheer him with drawings.

Put yourself ahead 10 years and she is a 15 year old.  She can end up resenting the fact that she was kept from the last weeks.

This is the time to video tape them together, to tape him reading stories on a good day, to take pics of them together.

To have him sitting out side watching her run, to let her pick flowers for him........

It isn't time to keep him away from her and I hope you can help him see that.

Take a page from olden times when death was a part of life.  People died at home, surrounded by loved ones, a part of the family, the sick bed in the living room.

We have taken death and made it something that is hidden.  In my opinion that is a mistake.

way to go Mists-you went and talked to him and got some straight answers from him.

That helps a lot.

The answers may not have been the ones you wanted but they were Jim's answers.

Even if he chooses to stay where he is can he come home for a weekend?

Mists

I'm glad you were able to talk. I hope it helps you. Here is a healing hymn for Jim. Rev. Carey Landry is a charismatic priest from the 80's. My aunt (now deceased) was a nun. She sent me lots of his music. I love it. He sings "And the Father Will Dance" and "Abba Father" on the right of the  page. His music is for sale on the net  and he has composed new songs and songs for children. He left the priesthood in the 80's I believe.  He is married and enjoys a music partnership with his wife.

I love the imagery invoked in this song.

(I may have to edit it to make the link live, I have puter problems.)

Lay Your Hands Gently Upon Us

The healing  angels are all around Jim's bed watching over him.

Mists, I just wanted to let you know that, even though I haven't been able to post for awhile, I have been thinking about you and Jim a lot lately - and praying for you both (and Rachel too).

Thanks.  Right now it looks like Jim will die soon.  I don't know how soon...weeks?  A couple of months?  I'm more devasted than you could possibly imagine.  Everything we have together going poof...all sorts of questions about what comes next.  I had a future with him and now I don't know anything anymore.  Most of all, I just plain miss his sense of humour and his ability to take care of things and hearing him snore next to me in bed.  Life expectancy is 80 years old in this country.  I just can't get past the idea that this isn't supposed to happen. 

MistsOfSpring . . . caring thoughts are with you.

(((((mists))))) holding you in my heart, sending love and light your way, you are not alone.

((((MIstsOfSpring)))))))

May God's loving arms surround you at this time.

Mists - I know it is a terribly hard time-

but on a practical note-Does Jim qulify for a CPP disability pension? My ex did in the last 6 months of his life-and more importantly  Our children received monthly amounts and now my youngest 2  get $200 a month-until you turn 18 or as long as you are in school. You have to apply through Service Canada.

If he qualifies it will make a difference for Rachel.

Really?  I don't know if he qualifies or not.  I'll have to check that out.  Thank you.