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MistsOfSpring's picture

MistsOfSpring

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Hopeful or hopeless

There's no shortage of opinions.  Some people are urging me to remain hopeful, telling me stories of those rare people who were given 6 months to live and are still alive 20 years later.  They are saying to never give up.  Some people are saying we should make the best of the time that's left and accept that this is it and that Jim is dying now.  They are saying that he shouldn't bother trying to do anything to prolong his life because it will just make his last few months more painful and he shouldn't suffer.

 

How does someone even make that kind of choice about their own life?  How does someone know if they should fight or surrender?  The interferon has messed him up so much.  It's hard to know if he's sick from that or from the spread of the cancer or from the side effects of all the other drugs he's on in hopes of making him feel better.  I want him to live another 30 years, but I don't dare hope for it.  I know the odds are against him seeing the end of this year, but I don't dare believe this is it.  It's a perpetual state of panicked not knowing, trapped mid "fight or flight" with my heart pounding and my blood pressure soaring.

 

And in the midst of this, navigating my relationship with his dad and step mom as though I'm walking on glass, trying to guess what Jim wants and doesn't want because he's so weak and tired that he's just not talking, filling out paper work for my time off school, missing our daughter and wanting her with me, but also knowing that having her here right now would be hard on her and hard on me.  Jim is staying there because it's close to the hospital and doctors and because the Home Care is all organized, he says. 

 

The house is lonely.  I want to climb in to bed beside him but he isn't here.  I stayed the night with him last night, but he's having so much trouble sleeping that we decided I should come in the day time so he isn't disturbed by me rolling over or getting up in the night.  I want to watch my little girl sleeping, but she's in North Bay.  Part of me wants to go up there to be with her and my family and to be in a warm, protective cocoon while I'm hurting this much, but then I wouldn't be near Jim.  I need to be able to go to him and spend time with him because I don't knowhow much time is left and because I love him and I want to be there for him...but he just lays there most of the time trying not to throw up, wishing he could sleep but not sleeping.  Sometimes he's himself again, but mostly he's not.  He's just quiet and unmoving and I want to help some how to comfort him or take care of him, but I don't know what to do and asking him is just bugging him.  *sigh*  I am useless to him right now.  I feel like I need to do something for him, but I don't know what I can possibly do that will make anything better. 

 

I feel like this can't possibly be happening for real, that things like this don't happen, 41 year old men don't die and 38 year old women don't become widows and 5 year old girls don't lose their daddies...but they do.  They all do.  It's so unbelievable and unthinkable, but it does happen every day and there is absolutely nothing protecting us.  We aren't in a safe bubble, even though we felt so safe before.  I don't know what, if anything, we could have done to stop this or even slow it down.  Maybe Jim could have had his moles checked regularly...that might have made some difference...but how regularly?  Once a year would only be helpful if the melanoma started right before the check up.  This is spreading so quickly...I wish he had gone to the doctor in August when the mole felt slightly raised, but he didn't think anything of it at the time, and a little over a month later the lymph nodes were already cancerous and enlarged.  I'm not sure if that month would have made any difference at all. 

 

My head tells me that he's probably going to die and my heart tells me not to give up hope that he might be the exception, and I'm weary of the battle between them. 

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Tabitha's picture

Tabitha

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and it is time for you to get counselling from the oncology hospital. Is there a social worker or a grief counsellor you could talk to? They have walked this road many times with other families.

As for Home care being all arranged-maybe-but that is really just noise. It can be arranged where you live too..

You can help Jim by just being and he knows you love him. Go spend the day with him.

Listen and plan what you want as well as what Jim wants.

Prayers for the whole family Mists.

sheldon's picture

sheldon

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you are not useless to him... you are his love. 

somegalfromcan's picture

somegalfromcan

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Mists, this is a truly terrible situation that you are in. It seems to me that if you make the most of your time right now, that is something you will never regret - no matter what happens.

 

In this situation, dwelling on the past is not helpful for anyone. Even if there is something that could have been done better or differently, you can't go back and change it now. You did your best with the knowledge you had and nobody could ask for anything more.

 

You may think that you aren't able to do anything for Jim, but I don't see that as being true. I would be willing to bet that your love is moving mountains for him - giving him strength that he would not otherwise have had. You know him better than anyone, and as such, are his best advocate.

 

What follows is a quote from one of my favourite Dr. Seuss books, "Oh the Places You'll Go."

 

I'm sorry to say so
but, sadly, it's true
and Hang-ups
can happen to you.

You can get all hung up
in a prickle-ly perch.
And your gang will fly on.
You'll be left in a Lurch.

You'll come down from the Lurch
with an unpleasant bump.
And the chances are, then,
that you'll be in a Slump.

And when you're in a Slump,
you're not in for much fun.
Un-slumping yourself
is not easily done.

You will come to a place where the streets are not marked.
Some windows are lighted. But mostly they're darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?

And IF you go in, should you turn left or right...
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it's not, I'm afraid you will find,
for a mind-maker-upper to make up his mind.

You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
The Waiting Place...

 


One of the final lines in that book is, "KID - YOU'LL MOVE MOUNTAINS!" and I know that's what you are doing for Jim and Rachel.

seeler's picture

seeler

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Mists - this is something you and Jim will have to figure out for yourselves.  I've known people who took all the treatments available and fought in hopes of postponing the end.  I've known people who decided to make the best of their last weeks (or months) together and discontinued all medication that didn't help them feel better.    No one is to say which were right.

 

Talk to the oncology people.  

 

And, if it were me, I think I would be trying to arrange extra-mural nursing or care in my home community and bring Jim home to spend his time with family and to spare you all the separation and the tension of dealing with the in-laws.   As soon as you and Jim were settled in, I would send for Rachel as well.  

 

I wish I could be there to help you.   When my daughter was sick, and money was tight, friends and in-laws arranged a fund raising event (in fact several) and raised thousands of dollars that helped them keep their home and ward off the worst of financial worries while she was fighting the cancer.   

 

But whatever advice you get, don't let you and Jim be forced into a decision that seems wrong for you.   Let if be what you think best.   It may mean choosing quality time over the possibility of quantity time, or vice versa.   

 

My prayers are with you.   You are not alone.

 

revjohn's picture

revjohn

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Hi MistsOfSpring,

 

MistsOfSpring wrote:

How does someone even make that kind of choice about their own life?  How does someone know if they should fight or surrender?

 

Someone makes that choice every morning they wake up.  Someone knows who they are, what their limits are and knows that sometimes they have pushed their limit to breaking and sometimes they have had their limits break them.  Every day is a similar struggle, though in many, many different ways.

 

Looking at an end to days tends to be overwhelming and depending upon the person it is a challenge to make everyday full of who they are or it is an object of terror to flee from.  Sometimes, for some people, every day has both challenge and terror.

 

In this, Jim gets to take the lead.  It is his life that is coming to an end and it is up to him to decide what meaning or purpose remains.  To be sure his choice impacts upon both Rachel and yourself among others and the two of you have the opportunity to cheer him on as he decides on purpose and meaning for his life.

 

You are also each on your own journeys as you attempt to define Jim's purpose and reason in your own lives.  Jim has the opportunity to encourage you as you define his purpose and reason.  Jim also has the opportunity to discourage you as you define his purpose and reason.  Not that I think Jim wants to discourage but because Jim is in the midst of a fight that he cannot win.

 

A miracle can always happen.  Miracles should never be expected or depended upon.  Face life as if there will be no miracle.

 

MistsOfSpring wrote:

The house is lonely.

 

Be prepared for it to get lonelier still.

 

MistsOfSpring wrote:

I need to be able to go to him and spend time with him because I don't knowhow much time is left and because I love him and I want to be there for him.

 

If that is what you need then that is what you should do.

 

MistsOfSpring wrote:

I am useless to him right now.  I feel like I need to do something for him, but I don't know what I can possibly do that will make anything better. 

 

You are far from useless to him right now.

 

Right now there is something that you can give him that only you can give him and that is your presence.  You chose Jim and Jim chose you.  For better or worse.  This counts as worse though I warn you there is worse to come.  You chose Jim and Jim chose you.  In sickness and in health.  Jim is sick.  He is your husband.  So what if you aren't a doctor, or a nurse?  Their ability to help is severely limited.  They care about Jim but they cannot love him as you do.

 

What he needs, more than anything else in this moment, is to know that you still love him and you,even though you are frightened, tired, confused and hurting will be there with him as he goes through the most terrigying ordeal of his life.

 

MistsOfSpring wrote:

I feel like this can't possibly be happening for real, that things like this don't happen,

 

That is denial.  It isn't helpful and it most certainly isn't speaking to you truthfully.

 

MistOfSpring wrote:

I don't know what, if anything, we could have done to stop this or even slow it down. 

 

This is guilt.  It isn't helpful and it most certainly cannot change what is going on in the present.

 

MistsOfSpring wrote:

My head tells me that he's probably going to die and my heart tells me not to give up hope that he might be the exception, and I'm weary of the battle between them. 

 

Do not fight the battle or even participate in it.  Prepare for and expect the worst that way you are at least halfways prepared.  If that preparation turns out to be too pessimistic then you end up having more time to do what you felt you needed to accomplish.  If you prepare for the best you will end up not doing the things that you will later wish you had done.

 

Without wanting to add to your burden I think it would be wise if you let Rachel know exactly what is going on and what the future most likely holds for all of you.  She loves her father and it is not right to keep her from him when they may have so little time left in which they can be together.

 

Ideally, Jim's parents should have invited you to stay with them if Jim is there.  There isn't a whole lot of time to waste on coulda, woulda, shoulda right now.  If they haven't offered tell them that is what you want. and need as Jim's wife.

 

Since your place seems to b e accessible to their place it would also be ideal if your parents could bring Rachel home and stay with her there for a while.  This would facilitate easier trips for her to see her father.  It would also make it easier for you to see her and be a comfort to her in this time of distress.

 

My prayers are for all of you at this harsh time.

 

Grace and peace to you.

John

gecko46's picture

gecko46

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Mists - having gone through this with my husband, I can assure you, you are the most important person in Jim's life right now, aside from your daughter.  What you are feeling is your own helplessness, but you are certainly not useless.  Hold hands with Jim or just stay close, letting him know you love and support him.  Touch is important.

 

If Jim is quiet and uncommunicative, it is probably because he is trying to process this latest blow and the shock of not knowing his future...he will find a way out of it, but you will need to be patient and that demands even more of you. 

 

If this is what Jim truly wants and if you can arrange home care, then take Jim back to your own home and bring your daughter home.  Being in familiar surroundings will be important to Jim and all of you.  The suggestion may upset his family....but you have to take charge now and do what is best for your family.

 

Trust me, you will find reserves of energy and strength you didn't know you had.

And don't do the guilt trip....all of you did the best you could.

 

Someone mentioned talking to your oncologist and perhaps a counsellor - both of these are good advice.  You have so much to process right now, it can be helpful to have  more objective opinions.

waterfall's picture

waterfall

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Mists my heart is breaking as I read your post and I know that the sorrow you are experiencing and relating to us must be only the tip of the iceberg. What stands out the most to me is that you seem to be standing alone throughout all this. Yes wondercafe is here for you, but your daughter is in North Bay and your husband is physically closer to his parents. As a mother my first instinct for you is to ask your Mom if she could bring Rachel home and if she could stay with both of you. It seems you could really use some "mothering" yourself right now to shore up your strength to deal with whatever comes.

 

Long ago, when my mother died, I was very young. It was the first time I had experienced someone so close get very sick then actually die. I was not prepared, nothing could have prepared me for it, I suppose. When I look back, I can see that we all went into ourselves and tried to remain "stoic" throughout, not admitting that we were all really really afraid. We cloistered off in our rooms and solitude each trying to cope in our own ways, trying to be brave for each other, yet we failed to realize that it was a time that we needed each other so much. To always remain hopeful is good I think, but it's also good to remain real throughout. Crying, feeling scared, loving someone so much and missing them even before they may be gone, it's all real.

 

As time has progressed, I have lost others in my life. I've learned that time stops for no one, death is a fate for all of us, but being awake, aware and present for the dying is so important. I ask myself, what would I want when it is my turn? I would want those closest to me to be there throughout, holding my hand, understanding my frustrations of not being able to get well, and sometimes it's also assuring them that though it will be hard, that you will eventually be okay. Help get Jim's affairs in order if it does come down to that and ask others to help.....and Mist, never forget that you are the wife, and though Jim's parents are also scared, their role in this is not the same as yours.

 

Phone your Mom, see if she will come with Rachel and stay with you. Is that possible?

As for things to do with Jim. Does he enjoy reading? Would he like you to read to him? Maybe some meditative music? Or is he a hockey fan and you could watch sports together? or a movie? Is he able to go in a wheelchair and you could take him for a stroll around the neighbourhood and sit in a park together...maybe a good time for both of you to confront your fears.......together and Jim can speak frankly about what he wants to happen.

 

and Mists..........love to you all.

 

 

waterfall's picture

waterfall

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Here is some info with regards to family medical leave:

http://www.labour.gov.on.ca/english/es/pubs/guide/family.php

chemgal's picture

chemgal

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I agree with Waterfall.  Do your parents have any obligations (jobs, or something else they can't just up and go from) where they are?

 

If not, have them stay at your place.  They can take care of Rachel for you, you won't have a quiet house, and you can go be with Jim with or without Rachel.

Pilgrims Progress's picture

Pilgrims Progress

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Mists,

Having been in your situation I expected the worst - but never gave up hope.

 

 

When my husband was facing death, he asked me what should he do in regards to further invasive treatment - which he knew, at best, would delay death by a few months but make him feel worse.

 

I told him it was his life and his decision. My role was to support him in whatever decision he made. (He had no control over his cancer, so I wanted him to have whatever control was still available to him.)

 

I want you to know that I still think this was the right thing for me to do.

 

 

There were times when we communicated deeply - which fill me with gratitude.

 

There were times when his physical pain was too great and communication centred on me making him feel more comfortable.

 

There were times when his emotional pain and grief at facing his death overwhelmed him - and he retreated from everyone - including me.

 

At these times he didn't want words or comfort - and I faced an overwhelming helplessness.

 

It was then I remembered when I was hospitalised when my depressive illness was at it's worst.

At that time I, too, had been lost in my own emotional pain.

It was here I learnt that, even though I was to ill to respond to touch verbally - I wasn't too ill to respond to touch at some more primal level.

 

With that in mind I never entered his room without some form of physical contact - no matter how fleeting. It was my way of letting him know that, even in those moments when he felt alone, he wasn't........

 

 

Mists, you have previously mentioned that you suffer from depression. It's important that your doctor is aware of what's going on with you.

You also need the company and support of a woman you are close to, preferably your own mother. You haven't mentioned your relationship with your mother, so I don't know if this a possibility?

 

Situations like you're in now are ones where we all could use a mother - our own, or someone who could fill that role in our life.

 

 

M'dear, your pain is palpable - my heart goes out to you.....

 

MistsOfSpring's picture

MistsOfSpring

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My mother and I have a good relationship.  We irritate each other a lot, but the love is strong and I trust her completely.  Right now Rachel is in NOrth Bay with her, and although I wasn't thrilled about sending her up there at first, now with this new development I think it's probably for the best right now.  Unfortunately she's torn between wanting to help me and looking out for her brother who is in a retirement home but who still needs lots of extra help.  She takes him to his appointments, arranges his medication, washes his clothes, etc.  He fell in to a deep depression when my grandmother died 7 years ago, a few weeks before I got married.  My mom spent a few years cooking for him and cleaning for him and taking care of him all the time until she finally realized that he couldn't live on his own anymore. 

 

My brother has said that he's willing to take some time off work to be with me if I want him to come and my cousin has said I could stay with her if I want to for a while.  It's amazing how many people have come forward to offer help.  Three moms of kids from Rachel's class have offered to take her to and from school or to babysit, friends from my old school have offered a maid service to come in and take care of things for us.  I'm surrounded by a lot of good, loving people.  I should probably take some of the offers.  I just hate taking them.  It's not because I'm some kind of martyr for pain or anything like that; I've just never considered myself to be a very generous person.  I don't want to take from people if I don't think I could give the same way, if that makes any sense.

somegalfromcan's picture

somegalfromcan

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I hope you will take them up on these kind offers! It sounds like, with the help of your friends and family, you could have Rachel come home and still have alone time to spend with Jim.

 

I know of a family who, last year, had a son battling cancer. His younger sister was about Rachel's age. Like Jim, the boy had to go to another city to get treatment and at least one of his parents would always be there with him. This meant that the little girl was constantly getting picked up from our after-school program by different people - and she loved it! She would get so excited when they told her what they had planned for her that evening. I'm sure that your friends and family will come through for Rachel like this family's friends and family came through for their little girl. It helped this little girl to know just how special and loved she is that all of these people would want to spend time with her.

Tabitha's picture

Tabitha

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Mists-Say YES to the offers of help. Really. They will make your life (and Jim's and Rachel's) easier and give you time and energy to do what must be done.

Maid service-Yes thank you

meals-yes thank you

Rachel being picked up and dropped off-Yes thank you.

Could your brother care for your uncle so your mom could be with you?

 

People are not offering help so it will be repaid. They are offering because they care about you.It's something tangible they can do!

Beloved's picture

Beloved

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MistsOfSpring - so many above have offered such caring, thoughtful, good comments.  I don't have words to add . . . except . . . sorry that things are so rough in your world right now.  Take good care.

 

kaythecurler's picture

kaythecurler

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(((((Mists and others)))))

 

I don't really have anything to say that hasn't already been said.  I expect there are plenty of WC folks like me who would feel honored to be there to assist you as you travel your path.   Too bad we are so far apart in a physical sense.  I agree with much of what other  people have said - especially the 'say yes to help from family, friends, neighbors" thoughts.

 

You are not alone.

Pilgrims Progress's picture

Pilgrims Progress

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Tabitha wrote:

Mists-Say YES to the offers of help. Really. They will make your life (and Jim's and Rachel's) easier and give you time and energy to do what must be done.!

I agree with this 100%.

 

Folks are offering their support because they care for you and your family - and because they know they would find life very difficult in your immediate situation.

 

In other words, you may feel alone, but you're not..........

 

I would strongly suggest you take one day at a time - and not try to focus on the future and whether you can or cannot  repay folks.

 

 

Also, we who have a depressive illness often feel inadequate and don't tend to see ourselves as being adequate in the caring role.

 

But, I have found that we have our own gifts when it comes to caring for others....

 

For instance, when my sister was dying I went to spend some time with her. Another sister concentrated on the cooking and housework (I'm the world's worst housewife) and I played with her kids and sat with her at other times and talked about our shared past. She could no longer talk at this stage and communicated by pointing at letters.

 

She pointed out "Nobody could ever make me laugh as much as you."

 

An unusual way of caring perhaps - but it's a memory I treasure.

lastpointe's picture

lastpointe

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The only reason for Jim to stay at his dad's home was to access the treatment easier.  At least that is what I remember from previous notes.

 

If he is getting treatment then that makes sense but you and Rachel should stay there with him.  Sleep on the couch if the bed is uncomfortable.  BUt spend that time with him.  he needs you and Rachel needs him.  She shouldn't suddenly find out her daddy is dying.  She may have very little time with him to treasure.

 

If treatments have been stopped then bring him home.  Get the hospital staff help you set up home care and all the services you need.  Every community has home care services and it can be done at home.  His dad is just blocking you by saying it is set up there.

 

Bring Rachel home too and your mom.  Her brother can survive without her care if he understands that her son in law is dying and needs mothering.

 

And take all the offers of help.  People sincerely wish to help and tangible things like cooking a meal, doing the shopping, transporting Rachel are good.

 

I would have Jim live a normal life in his own home.  Watching his own tv in his favourite chair, sleeping in his own bed.  Tucking his own daughter into bed or reading her a story when he can.  SNuggling on the couch or bed with her.

 

I would take lots of photos, of them together for her to have forever.  I would help them create memories, stories that you can relate to her over and over as she grows.  " when daddy was sick, you used to colour him pictures and put them all around him in bed so he could look at them........" or whatever stories there will be.

 

 

Don't give up hope but be realistic that his time is ending and that the three of you are a family and needs to share in your love together.

 

Ask his dad to be the one who visits you.  Not the other way around.  He is his dad but you are his wife.  You are his current family not them.  He is being selfish to keep him from you.  Who comes for the day to watch tv together or to read to him or to talk about the past.......  They can bring meals, and do errands for you so that you can be with your husband.

 

And if your mom can come, bring her.  That is a wonderful gift she can give to you.  That you cna be mothered and be with your husband and child at this time and yet also get her support.

 

 

SG's picture

SG

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MistsOfSpring,

 

The journey is personal...for Jim and for you... there may be days you are on the same page and days you are not... each of you can wander from one place to another and back and forth. Some people do not know how to accompany others on their journey and they may tell you what to do.

 

Jim will be hopeful and hopeless, he will decide to fight or not. He may waver day to day, minute to minute. So, might you.

 

That is ok.

 

It is ok for any of you to say "I want another 50 years" and another minute to say "I wish it was all over". It is ok to pray for recovery one time and to pray for release another.

 

It is ok.

 

It is ok to want Rachel there and to want to protect her from it.

 

It is ok to want to be the caregiver and also not want to have to endure it...

 

It is ok to want to be cared for and to not want to be cared for.

 

It is a time when there can be pulling close and pushing away...

 

It is ok.

 

Just know that this is normal.

 

I do not profess to know what will happen, but I can tell you, you are not alone.

 

 

 

 

 

 

 

 

 

 

 

 

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