Mists you don't have enough hands 

Why were the scans cancelled, just because of Jim's dad?  I don't see how someone can be too weak to have a scan done, I think you just sit there (unless it's the travel)?

If Jim really dislikes conflict, do you think it would work for him to listen to what people  have to say (medical and personal, sticking his dad in the personal category) have to say, then writing down his wishes?  They don't have to be complete full decisions, it could be something like he is somewhat interested in the trial and would at least like to see if he qualifies and can decide later if he wants to go through with it if accepted. I don't know if writing it alone would make dealing with these decisions easier for him, but it's my only suggestion for now.

So much speculation here Mists.  Nobody really can advise you what to do - asking for 'advice' from people who do no know all the parameters of the situation generally just causes more distress, in my experience.  You say you have a therapist & a social worker to talk with - I sincerely hope you will redirect your efforts there.

I belive you have previously posted that Jim's dad is doctor - "maybe one of the best".

I have to say that in 35 years of working in health care, I've never met any doctor who would not know the difference between medical journals & personal blogs, or understand the ins & outs of clinical trials.  So this comment doesn't make sense to me.

Having scans done is usually not particularly taxing on one's energy & being weak is not a reason most doctors see as a contraindication.  Entering treatment is taxing. They are completely different issues to be addressed.   Doctors understand that.

I think you also said that the source of Jim's weakness is unknown - it therefore does not follow that the doctor dad is suggesting waiting until he's stronger. 

The decision about Jim's capacity to decide on treatment is not yours, or a lawyers - it is to be made by the doctor recommending the treatment.   As we have said before here, if Jim is deemed incapable by his doctor, the decision making power defaults to his spouse - that would be you.  As his substitute decision maker, it will be your responsiblity to act as you believe Jim would want, not as you would want.  That's an important distinction, and difficult for you now.  The social worker & doctor can help you if things come to that point.    Court battle - no need to get yourself worked up about that, it's not how the system works.

As I said above Mists - I hope you work this through with your therapist & the social worker.  It seems clear that you feel overwhelmed & some of what you've said here doesn't fully make sense to me.  It certainly can be true that when under stress things become muddled.  I pray that you have some people in your life to help you attain clarity for the road ahead.

 MistsOfSpring,

I echo the need to work through this with your therapist.

Roles matter here and what roles each have and what that means can be difficult to process and accept.

They have countless experience with struggles when a partner chooses masectomy rather than lumpectomy, will not take medication, will not enter therapy, refuses medical intervention, chooses to not have treatment, will not quit drinking,signs a DNR.... and the other partner supports it wholeheartedly, struggles to support it or opposes it vehemently.

As painful as it may be, Jim is the one with cancer. He is the patient. Medical decisions, as long as he is competent, are solely his. It does not matter if you, his dad or even his doctors agree or disagree. What appointments he keeps or cancels are up to him. If he wants medical treatment or just pallative care is up to him. Who he chooses to listens to, doctors, family, friends, internet... again his. Who and what he want to avoids... again, up to him. Where he wants to be, what he wants to do...

If you think he is not competent, ask his doctor about an assessment.

You need help to grasp Jim's role as well as navigate your own role in this journey.  

Mists, I agree with SG and carolla.  Professional help is better than any advice I can offer!  I know you said you were seeing a therapist, but I can't remember if Jim is too? Is he getting any help that way in making these decisions?

(((((mists)))))

I really don't have anything to add.  This situation sounds heartbreaking from a distance - I can't begin to imagine how dreadful it is for those intimately involved.

You haven't shared much about your level of contact with the Social Worker involved - I do so hope she is helping you pick your way around all the obstacles.  I also wonder whether Jim has someone from outside the family to listen and guide him?

(Just to clarify - As a general practice, an oncology (cancer) clinic in a large Ontario urban centre, such as Jim is being seen at, has social workers available, as do the homecare agencies - so it is most likely that Jim has been offered such supports, should he wish to use them.  Even if earlier declined, they are graciously and gratefully available anytime a patient requests.)

I hear your frustration (and hurt) Mists of Spring.

Unfortunately this is a path we can't help you with-except by praying for you and sharing a few thoughts.

Like those above-try the hospital or homecare social worker.

That said Have you told Jim how much you want him back home?

He may be staying where he is to make it easier for you.

Have you insured you are listed as next of kin/emergency contact on his hospital forms-not his parents?

But in the long run Jim gets to choose.

(Believe what Jim says about it not being you. Really).

Wishiing you courage and wisdom and skilled help!

I should probably rephrase regarding the part about the medical journals vs. blogs.  His issue is with the internet itself.  He has no experience with it personally and doesn't realize that people have access to medical journals online in addition to things like facebook and blogs.  Anything that I read is suspect simply because it came from the internet.  As for the part about the scans, there is no confusion here.  Jim's dad has said outright that Jim is too weak to have the scans done, he has said we should wait until he's stronger and he's specifically said "maybe in about 3 weeks he'll be doing better."  I commented that Jim had said himself that the CT scans weren't a big deal and his dad argued with me that they were and that Jim was took weak to have any.

His father is a doctor, but he is an orthopedic surgeon, not an oncologist.  He's made several mistakes and misunderstood things throughout this, possibly due to his emotions.  One is the fact that he removed Jim's drains 5 weeks early which led to Jim having a terrible infection for a month after his surgery.  The sugical oncologist was livid when she found out that the drains had been removed, saying that this put him at a greater risk of infection, and although his dad was in the room while she talked about the problem, he never confessed to being the one who did it and let her go on believing that a homecare nurse had made the mistake.  He also misunderstood the benefit of the interferon, thinking that Jim had no chance without it and a 10% chance with it.  Jim and I both knew (through our reading of medical journals and publications online) that his chances at that point were actually closer to 50-50 and the Interferon potentially provided a 10% chance of postponing reoccurance. 

The other part of what you said got cut off when I tried to do the quote thing, but it's related to the decision making aspects of this.  I agree that it should be Jim making the decisions.  Unfortunately, he's either not making them or not verbalizing them.  I also really doubt that he has all the information he needs to make any kind of decision.  And yes, I'm continuing to talk to my therapist; she's actually the one who suggested that I might need to contact a lawyer.  I haven't managed to get in touch with the social worker yet.

Mists

I'm thinking perhaps Jim's dad believes  cat scans are harmful regarding too much radiation , just a guess. I don't know how many he has  had already. I can't copy/paste. You can google: "cat scan dangers of radiation" for your own information. I believe they are now saying they can have bad effects upon the heart.

  Also I had lots of experience with surgical  drains  myself and they are known to be very good as well as causing infection if they are left in too long. In my experience the doctors and nurses couldn't agree on how long they should be left in.

Just my 2 cents.....

Thinking about you always......God is with you.

Mists, my sympathy for you and Jim and his family. I wish I could do more! It sounds like his father is being intrusive, surely it is up to Jim's doctor what to do, not up to Jim's father.

Big virtual hug, many prayers, may the Lord be with you.

Lots of hugs and support for you Mists,

You are walking a difficult path. You are loving your husband, worrying about his health, worrying about your daughter, worrying what your life is going to be like

and still you are carrying on.

Ask us on w/c something trivial and we all have an opoinion for you.

Ask about about life and deathe choices and we need to defer to those with more information.

The reality sounds like Jiom may not be stronger, there may not be later......

Have wisdom and courage and do what will have the least regrets for you!

Keeping you all in my thoughts and prayers.

This is a tough and trying time for all of you and I assume alot of fear is with everyone.

A CT scan or MRI in and of themselves are not tiring though getting to the hospital, waiting around....... can be.  That of course can be mitigated by wheel chairs.

I suspect that in jim's state he is swayed by being at his dads home and is taking their advice as gospel.

If he gets into the study then he will need to continue to stay there at least for the initial stages i suspect.  Any studies i have been involved in as an RN or as a patient have required extra visits and testing particularly at the beginning.

i find it very odd that a physician is against studies.  It makes no sense as studies are what is done to change treatments.  I can only surmise that jim's dad is expressing his fear.

Talk to the health care team.  Arrange for the next visit to be you and Jim . His parents should not be there controlling the situation.  Try to get an open discussion with the doc.  Ask if Jim's therapist or social worker that is helping him can be there too.

Sadly, many docs have limited time and sometimes limited ability to talk to patients.  Rushing or simply talking over their heads doesn't help so an "interpreter" may help.  I know as an RN that after a doc left I often needed to spend a great deal of time going over the info myself .

I guess at some point you and Jim need to have the private discussion of  whether or not he wishes to fight the disease or simply live out his last days at home.  Making sure he understands that without treatment those days are limited.

Regarding the internet.  If you find pertinent info online, print it out.  that way you can accumulate a folder of relevant articles and jim's dad can be reassured by reading them and seeing where they come from.

Oh MistsOfSpring . . . I can't even try and put myself in your place, or even entertain "what would you do if you were me" - you have so much happening in your life right now - I can't even fathom what you are going through. 

But I do care . . . and I will pray.  Hoping  you find direction, strength, wisdom, help, hope, and peace in your situation with Jim, Rachael, other family, doctors, etc.

Peace be with you,