I'm praying Mist.

I'll say a prayer right now, MistsOfSpring . . . and sending you good thoughts and some positive vibes :)

Add me to the list of people who are praying for your family.

I am glad you are having a meeting with Jim's docs.  I hope you get yoru questions answered.  It helps to write down your questions first so you don';t  forget them in all the stress.

I will keep all of you in my prayers

my thoughts are with you may the news be accepted.

Sending hugs and prayers and positive energy into the Universe for you and Jim and Rachel.

God we come together asking for your help, your  light and your love to shine on Jim as he faces his   illness. Renew his body with fresh energy and strength  bringing wholeness and health. Lift up his spirit, let him not feel discouraged. Give him courage and confidence that all will be well. May the doctors and nurses use wisdom to provide the best of medical care including compassion and patience as he recovers.

May the healing spirit  of Jesus reach out to  him giving him and his family hope . May he feel peace and freedom from fear. We ask and believe in the Name of Jesus. Amen. As we have believed so may it be done.

Been doing so for a while Mists, and I'll keep at it!

me also, mists.

Me too Mists.

With the different time zones your appointments are over for today.

May you all feel the presence  and comfort of God and loved ones and friends!

RESULTS: 

The news wasn't amazing by any stretch of the imagination, but it did offer some hope.  At this stage it isn't considered curable, but there are things that can potentially extend his life.  Maybe.  There are a lot of things to consider...how effective is the treatment?  What are the side effects?  How easily are they managed?  Should we go for "tried and true" methods that are slightly effective or try something experimental that might have a great result, or that might do nothing at all? 

These are some possibilities for treatment: chemotherapy and a couple of clinical trials such as one comparing the effectiveness of dacarbazine (traditional chemo) with interleukin-21 (immunotherapy) and another open to those with a particular genetic mutation that is treated with vemurafenib. Finally, there is another option for those who have tried other things tha...t haven't worked called ipilimumab which was approved in the US for advanced melanoma in March 2011. There is so much information. Jim has a huge decision to make and I don't know what he'll choose. Right now he just needs to get stronger and more focused because at the moment he's too weak to decide anything.

Unfortunately, his stepmother decided to attack me verbally again today, this time in the examination room after the doctor left for a few minutes.  While the doctor was explaining the options open to us, she wanted to know how it would be if we just did nothing and tried to keep Jim comfortable for the time he has left.  I asked a couple of questions about the options the doctor was presenting and asked about an experimental treatment I had read about.  As soon as the doctor left, she turned on me and said I was pushing Jim to "do something" and I had no right to push him to try anything else.  She went on to tell me (in front of Jim and his dad) that everyone was disappointed in me for not taking care of Jim well enough and now her heart, his dad's heart, and his brother and step-siblings hearts are breaking.  Then she said that I needed a lot of help if I had to take a leave from my so-called stressful job because I didn't know what stress was and Jim's dad is still managing to go to work even though he has cancer, too.  I started to argue back, but she kept ranting over me, so I turned my back on her and just let her rant while I stared at the table.  Neither Jim nor his dad said a word.  I didn't expect that either of them would because at the best of times they both avoid conflict as much as they can. 

I don't know why she feels the need to make an already horrific situation more difficult for me.  It's as if she's simply decided that I'm to blame for everything and she's making sure I don't forget it.  I want to be able to help my husband through this, no matter what happens, and she's standing there like a guard at the door, lecturing me on what I should and shouldn't say to him.  He's caught in the middle of this because he still feels that his health needs are still best served there, close to the hospital and with the nurses coming every day for him.  I've told him that I'll support him in whatever he does and that if he feels the need to be there, I'll still come to see him as much as I can, but I want him home desperately...partly because I want to be the one taking care of him, and partly because I want to be able to avoid her as much as possible.  For now, though, I'm making the trek to Burlington every day and trying to keep my mouth shut around her. 

It sounds like Jim's step-mother is very angry about being in this situation that she cannot control - having an ill husband and step-son at the same time - and, for whatever reason, she is projecting that anger onto you. You did the right thing by turning the other cheek - you showed that you were the bigger person. There is nothing about this horrible situation that is your fault - you are not to blame for any of it.

Is Jim aware that you can have the nurses come to your home? Does he realize how much you want him to be home with you?

Like you said, Jim has some major decisions to make over the next little while. I pray that you all will be able to be at peace with whatever choice he makes. Whatever decision he makes, there are going to be times when you will not want to go home - have you thought about where you and Rachel might stay at those times?

I am so glad that you feel comfortable sharing your story here Mists. Thank you for this.

MistsOfSpring, I am listening to all of this smpathetically. Thanks for keeping us posted.

Mists I am holding Jim and you in my prayers.   I think of you frequently as I go about my day, and hope that you are receiving the comfort and support that you need for true healing for Jim and you (and Rachel, of course).

As for that step-mother from hell - is there any way that she could be excluded from meetings and discussions about Jim's treatment and care.  It sound like she is a tyrant who covers her anxieties and inadequacies by lashing out and she has made you her target.   You don't need this.  Try to find some way to avoid her.   Perhaps Jim's doctor needs to be informed of her browbeating you - it can't be good for Jim either, since she does it in front of him.   Maybe meetings could be restricted to Jim's wife and father - leaving out the step mother.  

MistsOfSpring,

I hear your pain and feel for the situation and its dynamics. I try to understand your position and feelings... all the while knowing that if it was your mother-in-law who was known to Wondercafe and venting here,  I would also be trying to understand her position and feelings.

You offer insight online that you may not or are not able to in person. We often hide/deny our innermost feelings or we simply do not speak them.

The insight this anonymous MIL could offer, but perhaps is not IRL, might be that this is not her son. She might feel this is an adult man with a wife coming home to his dad and thus her. It may not be something she even wants to undertake, but it is her husband's son. Then there is the role his wife plays (and if it was not ___, it would be any wife (perhaps that might offer the insight that it is part situatuional and perhaps not solely personal). She may feel that her husband being a doctor he knows best, his son would listen but for this woman... 

Then, again she may be a controlling woman...

In stressful life situations it can seem that every personal dynamic... along with all that has not been addressed or perhaps acknowledged surfaces.

This is a time when the patient should be calling the shots, but there are times they cannot, do not want to, do not care... are in avoidance... It can be a time people can wittingly or unwittingly taking over or be manipulating the patient or taking on things that are only the choices of the one with the disease or diagnosis, they can also create obstacles and hurdles for others close to the patient.

I tend to not try to offer advice, but I would think this is the time to advocate for a professional to help the entire family through this process, a time when Jim is asked to name his desires and his wishes clearly to all of those who need to hear it....

How that is accomplished is up to you and Jim. You can say you need help, that Jim does... You can speak to the doctor and have the doctor seem to suggest it... because people need to know, all the people.

Regardless of any dynamics, I offer this advice because it may ultimately fall to you as his wife and next of kin. You may need to decide what you are willing to abdicate and what you are not.

As things get more stressful or require more decisions this dynamic may present itself even more...

(((((MistsOfSpring)))))

I would eco SG-Time to involve the hospital social worker.

It is also Jim who gets to decide who is at the doctor's appointments.

Prayers for you all.

Mists, others have offered some good advice.  I'm just going to listen for a while, but want you to know I'm still here.

(((((Mists))))) this really sucks, big time, and I so wish you didn't have all this to deal with.

When I read about your MIL's behavior when the Doctor was out of the room I found myself thinking - if it happened to me I would like bring it up when the Doctor returned.  Something like - "While you were gone MIL shared some thoughts that I believe you need to be aware of.  MIL - would you repeat what you said so that Doctor ? is aware of your views?"  If she refused I would give him the gist and then state that in future you want to have a Social Worker in the room every single time you gather.  Explain that you feel you are being attacked unfairly.  That you don't believe you are responsible for Jim's illness - only for doing the best you can now that he is ill.  That you want and need to feel comfortable that everyone is on the same page and wanting what Jim wants.  That Jim should not feel pressured to take or not take particular treatments, to live in a particular location, to spend time or not with Rachel etc..

Mists, you are loving, lovable, and valuable, no matter what she thinks- and the only way you're going to be able to deal with this is to listen to the wisdom of your own heart.  Ensure the other caregivers hear your valid thoughts and feelings so they can best know how to provide the needed support.  Speak up and use what is available.

Mists I agree with SG and Kaythecurler It is very sad that you have to have a referee during this very difficult time. Remeber that lots of love and hugs are here on Wondercafe for you.

I want to clarify that I am not saying get the hospital social worker involved. That is Mists' and Jim's decision.

I have not had a wonderful relation with my in-laws. It has been strained and a crisis could see that divide widen. My first avenue in this situation would be asking my wife to speak up. If her history fo not doing so made that hard, I would contact someone to help her have the tools to do that... or someone to speak as the patient advocate...

Because she would need to voice where she wants to be, what care she wants or does not want, what measures she wants and does not want... I would let her and her family know that if she does not, I (emphasis on the word I) have to make those decisions in the event she is not able to make them and will be doing so uninformed.

My wish would be that they also help me get her wishes known.  If I seriously felt she was not competent to make those decisions, I would step in and then make them. If I felt she was being unduly influenced, manipulated, bullied... then I would take steps to stop that behaviour.

If I called in the social worker, I would know it may escalate the situation with the in-laws and it would be because I felt it was in my wife's best interests.

I am merely saying that a conversation needs to happen. It can happen by Jim initating it or Mists initiating it or with the doctor initiating it or many other options (among them contacting the hospital social worker).

As we read this and pray for MistsOfSpring and all those involved, I hope we also think and have those difficult conversations with those we love.

Mists,

Your entire family is presently experiencing the toughest, most heartwrenching situation any family can face - the life and death struggle of one of it's own.......

Sadly, when under such extreme pressure, folks don't always act as a cohesive and supporting unit.

If we're honest - and have been in a similar situation - we can all recount times when

"x" or "y" acted badly.

Sometimes we ourselves act badly. To try and lessen our pain we lash out - more often at those we've had issues with in the past.........

I don't think any advice offered will solve this. Your situation sucks - and some will handle it better than others. It's not a case of "shoulds", but a case of "what is".

Jim is at the centre. Your time with him could be limited - so is therefore extremely precious.

Whenever you can, show and tell him how much you love him - and be kind to yourself at those times when you can't.

What other say, and what we think we hear them saying is often not the same, in situations such as this,  when emotions are running high.  It's not my place to judge.   

I do continue to observe that Jim is portrayed as a passive or virtually absent party in the decision making.   If he is legally capable, the physicians will proceed based upon Jim's decisions, and his only - that is the law in Ontario.  If he is not capable, then his Power of Attorney will make decisions on his behalf; and absent a PoA, then his wife will be the decision maker, under the current legislation.  Do you know about PoA status Mists?   If he is as ill as you say, he may also need to have PoA for property(finances) enacted at some point, if he is too weak to manage his own affairs.

Many here have suggested repeatedly to you Mists that getting some professional help for yourself at this time would be of benefit.  While venting here may elicit some support and ideas, people on-line cannot be an effective substitute for real life assistance.   I hope you will do what is necessary to help yourself through this troubling time. 

Yes, I have a therapist that I'm seeing and I have a referral to speak to a social worker at the cancer clinic.

Also, yes...Jim IS passive, especially through this.  He's a brilliant man intellectually who has never been good with any kind of emotions.  He avoids conflict at nearly any cost, too.  I ask him questions but so far the only things he has really answered is that he does want to come home when he's feeling stronger and that he does want to keep fighting the cancer.  Beyond that, his standard response is "iuno".  That isn't due to his cancer or weakness from treatment, either.  That's just Jim.  His unwillingness or inability to have and/or express an opinion on important matters has been the biggest issue in our marriage, at least from my side. 

I think he's completely capable of making decisions for his health and his finances, although he certainly doesn't have to make them all on his own.  Financially everything is in our names jointly so I don't think he needs to do anything. 

As for my mother-in-law...this is one situation in which she's stating things very directly and I'm not reading between any lines to interpret what she means.  She specifically said that everyone was disappointed in me, that I had let them down by not looking after Jim properly and that now everyone's heart was breaking.  I asked her if she was saying all this was my fault and she said yes. 

As I tried to delicately say and our Aussie neighbour, PilgrimsProgress, simply said
... everyone is stressed and emotional and... sometimes we don't do any of that well... sometimes we are hard on ourselves... sometimes we are hard on others...

In my own experience-
When my father died, I blamed my mom (even though he was murdered and NOT by her).
When mom was struggling mentally, I blamed myself, my siblings and my step-dad.
When she was finally institutionalized, my aunt gave my step-dad the lecture of a lifetime for not getting her help sooner.
When my ex and her husband broke up, people took sides. The kids included, even though the two adults tried to say it was nobody's fault.  
When I was diagnosed with cancer, my ex wondered why she had not noticed my Maalox consumption and been more worried.  I blamed my self for smoking and not having it checked sooner. My grandmother blamed it on my job. My mom blamed it on my ex. My dad blamed it on my childhood (and ulcers) and my brother blamed stress too but pinted at my sister... 
When my dad was being diagnosed with Hodgkin's, symptoms were being discussed, my brother attacked my mom for not worrying about dad's sexual dysfunction (my mom just thought it was age).
When my sister's addiction was realized, my mom blamed her son-in-law...

In crisis, some blame themselves, some blame others, some blame God... when we hurt and are angry... and we cannot control the stopping of the hurt we want to make some sense of it and blaming it on something or someone seems to at least give it a reason or someone to blame or someone or something to be angry at.

You did not answer, but do you know if Jim has a PoA and if so who is named?

If Jim is being passive and letting others decide, if someone is named and who this person is matters.

Jim doesn't have a PoA. 

As for the rest, it sounds like you're saying that she's hurt and angry and scared and that she's found an outlet in blaming me for everything.  That's probably true, but it doesn't change that she's making everything harder.  This is already an incredibly painful and difficult time for everyone.  I have fear, anger and hurt, too.  I'm angry that Jim didn't have his moles checked regularly.  I'm angry that he didn't go in right away when he noticed that it seemed bigger.  I'm angry that his dad removed the drains after his surgery 5 weeks earlier than they should have been removed, an act which very likely led to the infection that Jim had to battle for a month and which delayed his treatment because they didn't dare start while he had the infection.

It doesn't do any good to attack people over these things.  Jim didn't ignore his cancer knowingly.  He didn't think to himself that he had a potential melanoma and he should just pretend it isn't there until he can't pretend anymore.  His dad didn't set out to give his son an infection.  He's a surgeon and he's worked with drains and things before.  To the best of his knowledge, there was no more drainage and he wanted to make his son as comfortable as possible, so he took them out.  He didn't know that they needed to be in for 5 to 8 weeks.  He definitely was doing the best he knew to do.  Right now he's suffering because his son is very sick and he himself has cancer.  He probably already feels a lot of guilt for the mistake he made; I would never throw that anger in his face, or even mention it to Jim or anyone in their family.  When I'm feeling angry, I'll vent it in other less hurtful places. 

Whatever anger she feels towards me, whether rational or irrational, isn't really the issue, I don't think.  What I find unforgivable is the fact that she's actually turning it on me.  She lists the people in her family who are broken hearted over Jim's illness, and directly blames me, failing to notice that I'm broken hearted, too.  She belittles me for my own stress and depression, failing to notice that my main stress is Jim's illness.  She lectures me on not pressuring Jim to make decisions that I want him to make, while telling him all the reasons why he should stay there instead of coming home.  She whispers to me that he's not going to make it and we should just stop trying. 

She has a right to every feeling she has, but she doesn't have the right to attack me.  She doesn't have the right to hurt and abuse me.  These aren't off-hand, thoughtless comments she's making...these are targeted missle strikes.  I'm trying to visit Jim there as much as possible, but I never know what kind of reception I'll get.  I feel sick at the thought of seeing her, but she's the "guard at the door" who lets me in...or not.  And yes, I'm angry with Jim over this.  I'm angry that he's chosen to stay there, and I don't know how much is because he genuinely feels safer and more comfortable there and how much is because he's trying to protect me and Rachel and how much is not wanting to cross his stepmother and how much is that he thinks she's right and he really does believe, as she does, that this is my fault. 

He's so weak and so sick.  I'm not about to pressure my husband to tell me what he's thinking when he just wants to sleep most of the time.  He needs to build up his strength for whatever treatment he chooses.  He says that he loves me and that he wants to come home when he's feeling strong enough.  I've told him that I want him to come home as soon as he feels that he can and that I'm willing to do whatever he needs in order to do that.  For now all I can do is wait.  And worry.  And try to hope that somehow, things will get better.

That's my hope for you too, Mists. I'm glad that this is one of your safe places to vent when you need to.

MistsOfSpring,

In no way am I saying anyone has a right to act badly. I am saying we all do from time to time, and we do so moreso when crisis strikes. The woman might also be a total bitch. I do not know her. What I think of her, what she is capable of, how she treats people... also does not play a role in my life. It very much does in your case.

That is why I ask if you have contemplated, because you know if this is an emotional reaction to circumstance or who she has always been.

I did not mean for you to pressure your husband. Whatever decision you make is yours and yours alone. The reality is that the conversation has to happen or the chips fall where they may. You may be fine with that.

The reality is that Jim is in their home. They will take him into an ER or call an ambulance if there is an emergency and if Jim is passive, easily acqueisces or uncertain or worse, they will basically make the decisions. Especially those that need to be made immediately. In some situations one can be ok with that or not ok with that. It is personal.

A domestic partner, common-law partner, spouse... may or may not be making the decisions based on someone having a PoA and they are not it. Some couples do that on purpose to avoid a spouse having to make such decisions, some know in advance, some find out during a crisis... Again, personal and sometimes fine and other times not.... and sometimes patients already sick are coerced.

My questions were only to ask who it is you think they are and in doing so also invite you to think about decisions, who will make them... will they be done as what has already been decided and as a cohesive family unit or not?

 I meant no offense.

No offense was taken.  I don't know what I should be doing or thinking with regards to the power they have over possible decisions.  I hadn't really thought of emergency situations when they would be there and I wouldn't, but you're right...if Jim can't speak for himself, they probably will.  I recognized that there may be the power to manipulate him, but if he can't speak for himself and I'm not there, I don't know what choices they would make on his behalf.  I'm quite certain that he hasn't discussed his wishes with them; it's hard enough for me to get answers out of him when I ask direct questions.  At the moment I think he's trying to avoid thinking about anything related to his cancer.  The feeling I get is that he's not exactly in denial so much as trying to maintain denial because it's too hard for him to think about.  In some ways I'm jealous of that.  It would be really nice to be able to pretend things aren't as bleak as they are. 

Denial doesn't seem to be my thing.  My way of dealing with a crisis is to become very angry and hurt and vent until my emotions are finally at a state of calmness, then usually to try some avoidance (which never works), and finally to face it head on with some kind of plan.  Then, when that first plan falls apart, which almost always happens, I repeat the process.  Jim, on the other hand, will just hide and try not to think about it.  That might even be a factor in why he's staying there...he knows that I'm not likely to just keep my mouth shut and let him stay in denial when there are questions to be answered and decisions to be made, and he knows I'm not likely to just make decisions for him without getting his opinion on everything.  Maybe for him it's comforting to know that his dad and stepmother will just do whatever they think is best without consulting him because he gets to maintain the illusion that things aren't so bad. 

I don't understand thinking or feeling that way.  I face things by gathering all the information possible and soliciting opinions from others to get as complete a picture as I can.  I gain strength from imagining myself in the worst case scenarios and thinking about my options and how I would get through it if the worst did happen.  At the same time, I don't depend on my plans as if they are carved in stone; I'm generally adaptable to going with plan b or plan c or plan w if it comes to it.  Jim sometimes says he isn't thinking anything...my mind is going constantly and always has. 

Anyway, I should get going.  Today is a "Me Day"...I'm getting paperwork organized and taking care of some things that I've let slide and I'm getting a massage because my neck and shoulders are so sore and tense from the tension and all the driving back and forth.  Thanks.

Hi Mists,

My heart really  breaks over all your posts.

You say many times that jim will come home when he feels stronger.

So let me be the devils advocate here and say why wait.

He can just as easily sleep and rest with you.

he can just as easily get home care if it is needed

He should come home

Jim himself has said that he wants to come home when he's stronger.  The only reasons he has provided are that he is closer to the hospital there and the home care is all arranged there and going smoothly.  We had a problem with home care before when trying to switch from one location to another and they never showed up.  His stepmother said that he had made some comment that was negative about me as a reason for staying there; I asked him about that and he denied saying anything negative about me.  His father and stepmother have both told him several times that he should stay there because they think it's better for him.  I've told him that I'll respect his wishes, whatever they are, but that I'd like him to come home as soon as possible and that I'll do whatever he needs me to do when he's here and that I can take care of the home care arrangements (one reason that home care never showed up the last time is that they didn't actually call to confirm anything, imo.)  So here we are.  I don't know if he has other reasons to stay there or not...he's not saying anything but "I don't know" to any serious questions.

He says that he wants me to come see him, but he doesn't want me to sleep there with him because I get up a lot and that keeps him awake.  He says that he want to come home, but he doesn't want to do it until he's feeling better and doesn't need the home care anymore.  He won't discuss much about his options other than saying that he wants to keep trying to fight the cancer, but he won't say which option he is most interested in.  Overall, he tries not to think about it.  When I talk to him about light things, like telling him stories about stuff Rachel has done with my parents or remembering things we've done together, he's positive and engaged.  When I initiate any topic about his cancer, his treatments or anything related to that, he shuts down or he becomes more dizzy or tired.  I don't think it's a passive-aggressive manipulation on his part.  I think he really does feel sicker when he thinks about it.  That could even be at the root of why he's choosing to stay there for now because he knows I will ask the tough questions, wheras they leave him alone.

He's always reacted poorly to emotional stress.  If our goal right now is to get him strong enough for a new treatment, pushing him in to the stress won't help.  He'll just be weaker from it.  On the other hand, letting him hide in denial isn't helping, either.  If I push him to come home now, I could be violating his wishes and he might not speak up for himself.  I'd definitely be creating more conflict with his dad and stepmother.  I suspect the result would be that he'd be more depressed and get weaker and his stepmother would get angrier, and what is already awful would become Hell for everyone.  Going there every day isn't good for me, though.  I'm getting sick from the stress of dealing with her and worrying about him and not having Rachel with me.  It probably wouldn't be so bad if they were welcoming me with open arms or offering a spare bedroom for me to stay in so I could go for a few days, then come home again.  Unfortunately that isn't happening. 

Today I didn't go to see him.  I needed to take some time for myself.  I feel better and more clear.  Would I be a horrible person and a bad wife if I started going 2 or 3 times a week instead of every day?  In particular if Rachel does come home to stay, which is what I'd like, going there every day will be difficult.  I don't want to abandon him, but this would be much less stressful (for me at least) if he was here.  If I don't take care of myself, how can I possibly take care of him or Rachel?  His needs as a cancer patient are very important, but aren't my needs as a woman who's husband has advanced cancer important, too?  Right now I need to not be facing an MIL who can attack me with no warning.  Right now I need to have my daughter home with me.  Right now I need to be able to take care of things at home and to visit friends sometimes for my own emotional support.  None of that can happen when I'm going to Burlington for several hours every day.  Am I a horrible person for wanting this break from things? 

Mists-those were clearer statements about your needs than I've heard before. Yes you have a right to have your needs met.

Can you voice your needs to your in laws.

I want to see Jim both Tues and Wed next week. It would be helpful if I slept here in the spare room.

Sounds like you are clearer about rachel. You are ready for her to be home.

Keep acknowledging what you want as you go through this journey. it is YOUR life too and you have the right to make your choices.