Topic: Remaining hopeful during difficult times

Dear friends,
Last week at this time my husband and I were walking through Central Park in NY and planning our future. Well

Re: Remaining hopeful during difficult times

Danielle,
After reading your post tonight Danielle I got on my knees and prayed for you and Jim. A friend of mine prayed for angels to be around me when I was at my sickest. It really touched me, so I prayed for angels to surround Jim in his hospital room and also angels to be with you. I will continue to ask for peace, strength and healing.  You will be in my prayers. God Bless,
Jamie

Re: Remaining hopeful during difficult times

Danielle,

Positive thoughts & prayers coming your way. You both have a good attitude & I will be hoping for the best. Take care & know that we are all here for you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Remaining hopeful during difficult times

Danielle,

More positive thoughts and prayers coming you and Jim's way.

My best wishes to you both.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Remaining hopeful during difficult times

Danielle we are so very sorry to hear of the turn in events. Keep thinking about that walk in Central Park. Our prayers go out to you both. Teddy lights a candle every morning at Mass for our CC friends. CC doesn't come with an expiration date but stay close anyway to give each other strength.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Remaining hopeful during difficult times

Danielle,
I am sending my most postive thoughts, warm wishes and prayers to you. Listen to the doctors, but only to prove them wrong. Concentrate on your family and getting things in order, but only as a precaution...As I like to say, nobody has an expiration date stamped on their foot.

I was in the hospital for a week..infections, hooked up to food and fluids and now I am out and doing well. The body just sometimes needs extra attention.

Thinking of you,
Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Remaining hopeful during difficult times

Danielle,

My thoughts and prayers are with you both.  Read my signature line and then continue to live it!

Much love, hugs and prayers.
Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Remaining hopeful during difficult times

Danielle.....tons of good wishes coming from me also.  Is your husband feeling a bit better today?

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Remaining hopeful during difficult times

Dear Friends,

Thank you so much from both of us for your love, prayers, thoughts and positive energy!! It warms the heart and provides fuel for healing. We received some more bad news today (lots of complications, bleeding, gushing wounds, more clots and other difficulties) and actually had a bit of a crap day. It's 930pm and he's only now returned to the room after a CT scan...Nonetheless, life is still good. Thank God our kids (in Australia right now...) are en route to Phoenix and we are full of hope, peace and feel surrounded by love. It's good. Deep breath. Peace within and we'll tackle tomorrow with a vengenance. Watch out cc.

With love and prayers to all of you,

Danielle and Jim

Re: Remaining hopeful during difficult times

Danielle,
Warm thoughts and good wishes for a better day. Sometimes I feel like Scarlett O'Hara with this cancer because in my head I say "I will think about that tommorrow. After all tommorrow is another day"  Silly I know, but with this cancer, sometimes you just have to accept crap days knowing the next one can be better.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Remaining hopeful during difficult times

Dear Danielle,

Hoping for a better tomorrow for all of you.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Remaining hopeful during difficult times

Peace, strength, and healing for you and for Jim - prayers are going straight up. I believe in angels, and felt them hold my husband and I  up when we needed their help most - I pray they will be with you and surround you both.

Joyce C.

Re: Remaining hopeful during difficult times

Danielle,
I've continued to pray for you and Jim. I am sending prayers and good thoughts your way. Don't forget to take care of yourself during ths time also. Make sure you are getting somthing to eat to keep up your strength. Keep us posted on Jim and you both will be in my prayers. God Bless,
Jamie

Re: Remaining hopeful during difficult times

Danielle,

More positive thoughts and prayers coming for you both. I hope you both have a better day today.

Best wishes

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Remaining hopeful during difficult times

My dear friends,

Thank you so much for the continued love and prayers. YES, we did have a better day. Your energy, prayers and angels reached us today. Thank you.

Today, the team drained his ascites (?) and also took 900 ccs from the chest cavity (another pleural effusion). Now...this is a good thing. Last week's pleural effusion left him intubated and in horrible shape. The infection is under control. Spirits are down but we're regrouping and gearing up for the next fight.

The ICU team are fantastic: not only do they let me sleep in the room every night, last night no one batted an eye when I slept squashed up in Jim's bed!!! He slept like a baby with improved breathing and heart function. One of the doctors brought him Hagan Das...family, friends giving us love and support.

I wish all of you a good day tomorrow. I send you strength and peace.
With love,
Danielle

Re: Remaining hopeful during difficult times

Danielle,
I am glad things are looking up. Hans squishes in my bed when I am in the hospital too. It does make things better just to be so close.

Still sending you warm thoughts and prayers.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Remaining hopeful during difficult times

I am sorry to hear the 'new' news about your husband.  It sounds like you have a nice team of people working with him- amazing what a huge difference that makes. My dad is finally in a really nice hospital and everyone seems sweet and caring (as opposed to the last hospital he was in where you got a bad feeling just driving up to the place and hardly anybody smiled).  You both are in my thoughts and prayers.

Re: Remaining hopeful during difficult times

Dear Danielle, I have been reading your posts here and am inspired by your positive energy and optimism. You're a reminder of the value of holding onto goals, faith, and the belief in miracles, even in the face of fear.  Keep snuggling close to your hubby and know that you continue to be in our hearts and prayers.

Tess

Re: Remaining hopeful during difficult times

Dear friends,
Thanks so much again, this site is such a comfort to me.  It's 400am, I am at the hospital and can't sleep. Mamy of the doctors/social workers are telling us Jim can be discharged, "rehab is possible", "go home" (very nicely) while the nurses won't even let him stand to move from the bed to the comode because his heart and respiratory functions are so weak. They are telling me to get home health but I don't know how I can manage when he can't even sit up in bed on his own (and he can't lie flat). As background we have family in Tucson but actually live in Australia. The Mayo team wanted us to go back to Aus but explicitly stated that a commerical flight would kill him and to medievac him (at a cost of 300,000 USD, a cost our insurance won't bear as it is humanitarian repatriation as opposed to a transfer stemming from a need for urgent medical care). i don't think i can ask our family (my family, his inlaws) to completely remodel their house (i.e. wheel chair lifts).

I don't know what to do. He is so sick. He doesn't understand (and neither do the family or myself...) whether he is dying or just had a horrible setback. All of his family from Australia is here now and everyone is looking to me for leadership. Of course I know that CC will eventually take him but I don't know if this is a few weeks or a few months or longer...He is usually astute to his body's messages but he is also uncertain.

I think our the only feasible option in the short term is to go to a care facility focused upon rehab as I don't think I can bring him to a palliative care institution when some doctors are still telling us rehab.

It feels like the storm I wrote about last week has passed. The doctors had told me that he had been going down quickly but now he is doing much better. His blood is normal, infection controlled (gone), his fevers are gone and is heartbeat is much reduced (almost normal). However, he is draining approx 600 from his chest cavity each day (has a lung catheter) and as i said above he is bedridden (and dear God in heaven he has bed sores which hurt me so much  my stomach bleed).

I am genuinely happy that so many of you are doing so well and I hope it continues. Nonetheless, it breaks my heart that my husband whose CC was sufficiently "non-progressed" (not sure if that's a word) to be listed for transplant in March is now to sick for chemo.

My apologies for the long winded vent...my heart is breaking for this beautiful, decent man who is suffering so much.

Danielle

Re: Remaining hopeful during difficult times

dear danielle,
     
       i cannot tell you how heavy my heart feels for your husband and you, after reading your post i felt like  there has to be something, anything, that we could do to help. i hate this feeling of being helpless(we all do) it makes me want to scream, but all we can do is sit back and listen to what the medical world is telling us. you are a strong women and your husband knows that you are doing your very best for him, keep positive and going forward. this is a hell of a road we travel there are many ups and downs so im praying that this is just a set back and that just around the corner there is good news for you and your husband. so i send nothing but good wishes and lots of prayers out to you and your husband...........ron

Re: Remaining hopeful during difficult times

Dear Danielle,
I'm so sorry to hear that you are all suffering so much.  You are deeply in my thoughts.
My only advice is to follow your heart and have no regrets and you will do the right thing. He is so lucky to have you by his side.
Wishing you both peace and strength.
Wendy

Re: Remaining hopeful during difficult times

Dear Danielle,

I too am so sorry to hear of what you and Jim are going through. It makes me so sad & my heart is also breaking for you.  So much to think of and deal with. I know well what you are feeling, as I too was there not too long ago.  My husband was also a Jim.  I will be hoping for more positive things for you and your Jim.  Try to be guardedly optimistic.  This disease is so unpredictable, both good & bad.  I too will keep you in my thoughts & prayers. Wishing you comfort, strength & peace.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Remaining hopeful during difficult times

I am so sorry to hear about all the problems your Jim is encountering.  You are the proof of how us caretakers find strength we never thought we had.  Danielle, I don

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Remaining hopeful during difficult times

I agree with Marions. Ask those questions and make sure they answer them. You are doing great. It is so hard to make decisions when everything is going topsy turvy. Does it feel like they are forcing you to leave when your husband isnt ready? You should not have to be forced to give a type of care you are unprepared for and have no training for. You are only one woman and despite how much you love your husband, if you need help, you need help. That is no reflection on you or your love for Jim. I am concerned that the hospital is not taking your needs into account. It is not selfish for carers to consider what is physically, mentally, and emotionally capable. Make sure the hospital sets you and Jim up right before they send him home or to rehab.

Sending good thoughts and warm wishes.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Remaining hopeful during difficult times

Dear Danielle;
I agree with Marion also. Ask questions and make sure you get an answer you understand. Ask them how can he go home if the nurses wont even let him get up? If he goes to a rehab hospital will they be working on getting him up and building up his strength so he can go home? Again Marion is right. You are only 1 woman and given the circumstances can't do it all by yourself. I am also worried that he has bed sores. They need to be addressing those aggresively. You can get serious infections that can be life threatening with bed sores so they need to get those cleared up. Certainly not something I'd think you could handle at home by yourself. I find myself getting a little angry that the Drs and social workers have put you in this position without a lot of guidance as far as I'm concerned. Maybe talk to one of his nurses and see if they can suggest anything else or someone else to talk to. I'll keep you both in my prayers and if there is anything I can do let me know. God Bless,
Jamie