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Réponse de Carriek
24 avr. 2012, 21 h 33

thank you Cath1 and Tian
glad to see Caron was here.... I know the message was lost but I will keep checking Caron, to see if you posted.
Carrie

 
Réponse de Caron
24 avr. 2012, 23 h 23

Hi Carrie,


I know that it has been awhile since posting last … and somehow time has gone by so fast.  My husband had additional bone scans and they showed more cancer in the right hip and new cancer in the left hip.  So basically now he is disabled and cannot walk even with the aid of crutches.  He now uses a wheel chair to get around.  The last several weeks have been hard since he had stopped eating and wasn’t drinking much, and I was told to contact family and friends that might want to see him before he got really ill.  Then last Friday, after the doctor started him on a steroid , he started to eat and drink and his energy level went up.  So this week he has been really active and although he is still in lots of pain, he is enjoying life more and more.  How long this will last I don’t know … I am just enjoying it for the present time.


I know that you are really hurting Carrie, you have a young family and it is so very unfair that your husband may not be in your lives in the years to come.  But know that God is ever present in this situation and will be there for you, helping you to cope through all of this.  God has been by strength in the last year… and without all the prayers of family and friends, I am sure I would be more of a mess than I am.  My prayers are with you, that God would provide the peace that both you and your husband need at this time.


 It is so very frightening to think that my husband may not be here much longer, and I wonder what I will do.  We were planning to retire soon … to travel …to enjoy the grandchildren that are due to come into our lives this summer. ( we have three grandbabies on the way late this summer )  It is painful to hear my sons say that dad has to be here to see the grandbabies … but this cancer doesn’t want to stop … doesn’t want to go away.  Cancer it seems doesn’t just hurt the person that has it … it is a disease the hurts the whole family.  Right now, today I am doing ok, today is a good day.  But this past Sunday, my husband and I sat down and talked about his last wishes … about how the cancer is taking everything from him.  To see him in front of me breaking down in tears ( I have never seen him cry before ) it torn me apart … I didn’t know I could feel so much sadness all at once.  But today is good … and I have to focus on that.  I have to focus on the fact that God has everything in place … He is looking after us …even though it would seem like my world has been blown apart.  I have been in situations where everything seemed hopeless and there wasn’t any light at the end of the long dark tunnel … but God was there and showed me over time that there was hope and there was light.  And my life weathered the storm and life was good again.  So Carrie, take it from a slightly older woman , that life will again be good … and there will be days of laughter and joy.  Why we have to go through all this heartache I don’t know … there are just so many things in life that there is no answer for, all I can say is trust in God … He will be there.


How I wish I could talk to you in person … and like I do with my friends … over a large cup of hot chocolate … sharing our sorrows and worries with each other.  How I wish I could give you a big hug and make all this hurt go away.  But know that you are thought of and prayer for.


Love to you and your family


Caron

 
Réponse de Carriek
26 avr. 2012, 23 h 41

Hi Caron,
Im so glad to hear from you. That is wonderful news that your husband's energy level has increased. Steriods can certainly help with that. Same with the appetite. My husband, is as well on steriods but can only stay on them for short periods due to the side effects he suffers. Your  words bring  comfort as you are the only person that I know that is experiencing a husband that has the same cancer. This disease is horrible. I wish you both all of the best....and wish you many days of feeling well enough to enjoy your time together. Gotta run phone just rang... but will message again soon.
Carrie
   

 
Réponse de Cath1
28 avr. 2012, 16 h 32

Hi Caron:


Thank you for taking time out of your day recently to post your update about your husband and to reach out so warmly and intimately to Carriek. Your heart is generous as you share it openly, with tenderness marking your every word. I admire your ability to share your vulnerability. That’s never easy.


It’s wonderful that when you last wrote you were having a good day and that your husband’s appetite and energy has improved. I understand your relief and his for that encouraging development especially in light of the difficult news you both received about his health. I am wishing many more of the good days for both your husband and you and your growing family. Congratulations on your expected summer baby blossoms!:-)


Caron, I sometimes find myself in an awkward position when I read your posts and those of Carrie’s because I have never experienced the same type of situation yet I empathize with you both. I wish to say some magical words that would help ease your heartache, but I know it is not words that heal our hurting hearts but the intentions that inspire them. I hope you and Carrie both know we all on Virtual Hospice intend to be here for you, to listen and to console you throughout your time of uncertainty and grieving and to offer our comfort and care.  

It’s especially wonderful to see you and Carrie nurture the bond you share which is born of a common understanding of your husbands’ illnesses and your shared experience with sadness while trying your best to be strong and to cope with it all. You are both extraordinarily heroic and inspirational, although I imagine you would each choose to be considered average and to live your ordinary lives without the challenges you and your families face, if given the chance.


Worrying that I may say the wrong thing at the wrong time causes me at times to hold back from responding to your posts but I do read them and ponder your circumstances and offer prayers for you and Carrie both, and your families. Our spiritual beliefs are such personal matters. If I were in your circumstance, or Carrie’s, I am not sure I could say with such convincing conviction that I have deep trust in my concept of and relationship with a higher power as you do with such enviable resolve, yet I am glad that your unwavering faith sustains you as you struggle with your agonizing feelings. Your faith is a wonderful comfort, I am certain.


When I was young my Mom was a very religious person and she raised me in the Catholic Church and I was expected to naturally follow in prayer her footprints to faith. For me as a child I found this more than a challenge, and trust me I prayed fervently for my belief in God to grow, yet He always felt distant to me. I could not accept blindly without deep questioning and ever-present doubt His existence. The grace of faith that came so instinctively to my Mom alluded me until adulthood, and when mine blossomed into a spiritual force of its own it looked a little different than my Mom’s, but in essence, there are many elements of her beliefs that I still honour and retain. I do believe that we are all spiritual beings but I also believe that we each discover the meaning and value of a Divine Presence and experience its depths in our own time. In any grand plan there are endless interpretations, I imagine. I also understand and respect that some people reject spiritual matters entirely. There are, I believe, many different paths to profound enlightenment and our experience along the way is as individual as are we.


For those who don’t have the same reliance on faith in God as you or my late Mom, times of crisis can make them worry or wonder if God even exists. I can relate to this kind of thinking because when my Mom was suffering mentally, from my child’s eyes, it was hard to accept that an all powerful God would permit anyone to feel pain without intervening to stop it. Life and God and religion are deep topics and difficult to penetrate. I don’t have the answers, but I do know that life includes more suffering than we wish for, and some people have more than what is fair. Trust is an issue for me, and as I contemplate God and matters of faith, I am beginning to trust more in the Nature of things but it is, I admit, not easy because the child in me still wishes for a God that would save the world and all the people in it from having to struggle with loss, sadness and pain. I’m a dreamer and my faith is a work in progress.


Until dreams of a blissful existence are divinely manifest, we inhabit the world as it is and find hope in our wishes and prayers. I will be thinking of you and yours and wishing you the strength to endure the sorrowful mysteries of life as you find inspiration in your faith.

Hugs to you and your family xo and to Carrie and her family xo



 
Réponse de Tian
28 avr. 2012, 21 h 44

I am at a loss for words. I just want you Caron and Carrie to know that I am here for the duration and I will have something to say on those rare occasions when I can add to what Cath1 has contributed. I am so glad you have all found each other.
 
Réponse de Carriek
30 avr. 2012, 0 h 58

Hi
Thanks so much for your thoughtful kind words. They mean so much. I truly feel your support each time I open this site and see the replies...Your words offer such comfort.
I do speak openly with my Hospice worker, who is great by the way... very understanding and so easy to talk to.
I find that at night when all is quiet, I lean on your words and feel the need for your support.
 Caron your replies I truly look for too as I know that yis ou are sharing the same pain...
I think of you often and yes I too wish we could sit with a cup of hot chocolate or coffee and speak to each other.
I feel somewhat reserved as a password is not required to open this site and read comments, but only required to reply. Not sure why that is?
I wish that there was a support group in my community where caregivers could meet and offer support to each other. This is so difficult and sad.. its so hard to believe that six months ago, this world was a world that we knew nothing of... I couldnt have imagined the suffering and pain that my husband could fall victim to.. and that this roller coaster would take hold of our lives so fiercley and offer no mercy.
I find myself screaming inside...that this cant be happening... that it wasnt supposed to be like this, we  were supposed to have forever together.
But each day I wake up to realize that this is not a bad dream but our new reality. I know my feelings are normal that to watch my husband grow weaker each day is breaking my heart. Everyone says make the best of the time we have but his energy level is so low that he is basically sitting in a chair or lying  in bed and seems so distant...he is so quiet most of the time... Im afraid the time we have is short and really have no idea how one prepares for that.
Carrie         

 
Réponse de Cath1
30 avr. 2012, 3 h 48

Hi Carrie:

I just read your post and want you to know that I am thinking of you and hoping your mind will get some rest tonight when you finally surrender to the safety of sleep. Close your eyes and wander into a dream. I hope your dreams carry you gently away from your worries. 

I will write more to you tomorrow, but I just want you to really know in those lonely moments in the dark when you're feeling alone, that someone is thinking about you and caring so much how you feel.

We're here for you. Always.

Hugs xo
Cath1
 
Réponse de Tian
30 avr. 2012, 15 h 52

Dear Carrie 

Your anguish comes through loud and clear. It's natural for you to feel afraid and helpless as you see your husband fade under attack by his relentless disease. Yet despite how you feel at the moment you have given me the impression that you are a very strong woman so I'll forge ahead in my all too blunt manner with my own views. With all the difficulty I have in expressing myself I know it's still a lot harder for you to read this than for me to write it. I don't profess to have any answer so deal with it as you will.
 
Unfortunately there is no manual for dealing with your situation. Every situation is different. The personalities involved are different, the family dynamics and history are different, the ways the disease affects different individuals can be different. You and Caron can relate to each other as to no one else but there are still differences in the paths you are travelling. And since people die just once we can't be certain of the outcome if we had tried something else or avoided something.

That being said, it sounds trite, but you need to take things day by day and do the best you can do. No one can completely understand what's going on inside you but you are not alone. You have family and possibly too many friends. Listen carefully to the the professionals caring for your husband with the hospice worker being a resource to definitely avail yourself of. But you know your husband best and it is for you to process everything and decide what is best for him. It is a terrible responsibility to have but I'm sure he feels most secure with YOU bearing it. As bad as things are just think what it would be like for your husband if you were not there. It may not be possible to do things that are on his bucket list but he will feel your love and that's what it's all about.

Your husband does not know how much time he has left but actually no one does. Although as time passes by it will become clearer to all. It is not too early to start planning ahead to life without your husband. It's a task that won't get easier and your husband should contribute while he can. And the dread your kids feel has to be addressed along with everything else. No wonder you feel overwhelmed. WHAT A #&%$7;@)* MESS! You face a harrowing grind and very importantly, for you to best deal with it you can not neglect taking care of yourself. At some point it could be helpful to have your husband in a hospice if that is possible.

You will be losing your husband far too soon. It is small consolation but you can reflect on the quality of your life rather than the quantity. In my capacity as a palliative care ward volunteer I have encountered many older people who would be envious of what you have shared with your husband. I think making your husband as comfortable as possible now is the ultimate act of love. It's as difficult as h*** but hopefully it eases the pain.

Tian
 
Réponse de Cath1
01 mai 2012, 12 h 01

Good morning, Carrie:

Tian wrote an amazing message to you and has given you a lot to consider along with his especially sweet brand of support!

I was thinking about Caron and her last message where she was talking about how very difficult it was for her to have a conversation with her husband and see him cry for the first time ever. It broke my heart. Many people, but especially men from my observation, internalize their emotions and find it near impossible to express them so vulnerably by weeping, and yet it would be such a great release of pent up tensions if only more men could cry openly more often. Tears do wash away our pain for a time.

I imagine that your husband has many reasons for keeping to himself and quietly holding within him his emotional distress, as so often men do withdraw when feeling overwhelmed, at least that is my experience with men. They are used to being the problem solvers, the active ones, proud and protective of others. Your husband may see himself as the one who could always face down any demon with action but now he must adjust to the fact that he feels powerless, just as you do, for he cannot change with his will or his might what is happening to him and nor can he shield you and the children from witnessing the ravages of his disease. Men like to fix things and improve situations and he may feel completely immobilized because he cannot find a solution is this circumstance. 

Carrie I hope that you and your husband will find a way to open up honestly about how you are both feeling with one another. The emotional burden you are both carrying need not separate you once shared. Your husband is likely also feeling exhausted and may be feeling depressed, quite understandably, and perhaps you could explore that possibility with his hospice worker and his doctor. I am so sad to hear about how isolated you are both feeling and it must be the most lonely and frightening time when you are both trying to spare the other from experiencing your pain and uncertainty. Perhaps your intention to protect him from the truth of your fears and he yours is increasing the fear you both feel? You, as Tian wisely counsels, know yourself and your husband best.

I am thinking of you this morning Carrie and hoping you and your husband and kids will find some small measure of comfort today as I know that you all have endless amounts of courage already!

Hugs xo

Cath (PS - My profile name was changed because the "VH" apparently made some people wonder if I worked for Virtual Hospice - which I don't - I'm just a person who knows a little bit about life and loss and who values this healing community and every person in it!:-) 
 
Réponse de Carriek
12 mai 2012, 15 h 51

Dear Caron
Been thinking if you daily. Wondering how your husband is making out ? Wondering how you are doing?
My husband has been completely in bed for 15 days. He was in the hospital for 5 days. All time is spent sleeping or trying to sleep.
The sadness in my husband's eyes breaks my heart.
We have moved our bed to the main floor of our house so that he does not have to struggle with the stairs which was a great decision as he would no longer be able.
To see such a strong, courageous, robust man weaken to this point breaks my heart into pieces.
I have always believed everything happens for s reason ...... But cannot find one !!
Cannot understand the why's
Cannot believe this us happening.
I wake up each day to realize this is nit a dream but rather a sad lonely journey that takes pity on no one.
C


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