How Long do we have?

Hello, stage 4 here dx 2006. I've had 5 thoracic surgeries at Stanford. Most are VATS and I was told early on that I had only about 6 months as I had liver and lung mets. I am 54 and I've seen my kids go from 12 and 10 to 19 and 17 so I hear you so well. I don't have any magic but just trie to do what I could for them. I did go on an antidepressant as we had some issues in the family as well and I wanted stabilty.  So no one can tell you what you have left. Just keep scartching for the surface.

All my best and prayers

Chip

LindaK. said:

Fear

I don't have any advice for you since my husband is at the beginning of his cancer journey.  He was diagnosed in December, 2012, with stage 2 colon cancer and just last week he finished his 12 cycles of chemo (5 with oxy, 7 without).  I think I have a constant fear deep down that I try to suppress at all times.  I HAVE to keep positive about his cancer, but knowing deep down it may come back.  Our roles as pessimist/optimist over the years have flip flopped during the past 8 months.  He has told me once or twice he knows it will come back, those words (although I know entirely possible) really rocked me.  I have read so many stories on this board about people's years and years of surgeries, treatments, reoccurrences, etc. and it scares the heck out of me.  At the same time, I am thankful they share their intimate stories and feelings because it helps me prepare, at least I think it does.  While my husband's health during his treatment was relatively good, he said he didn't know if he could do chemo again.  One of the sub onc. we saw told him kind of flippantly "We don't even know if this chemo helps stage 2 people"  Well, that made him want to give up and then it was hell (to get him to go) each treatment after that.  I wish we could give a lesson to the oncologists on what they say to people.  I think each person is different and those of us who love and support them must support their decisions, as difficult as it may be.  We pursuaded my husband to get the Folfox treatment because he was 59 when he started and we have two grandsons who adore him.  How could we ever tell them that Grandpa "gave up" because he didn't care?  I'm not sure how I would feel if I were tha patient.

Selfishly on the caretaker side, I am also tired of this and am ashamed to think to myself "How many times would I be able to go through this?"  and I guess the answer will be "As many times as I can"

Thank you for sharing your story, I appreciate it.

Linda

I have traveled both sides of this street...as a patient, and a caregiver.  I am currently in the caregiver role, caring for my life partner who just received a heart transplant 2 weeks ago....he was dying, he had 2 months, when the new heart was gifted.

Caregivers have the toughest road.  They hear EVERYTHING, when the healthcare community is quick to shelter the patient.  But what is not thought about  (and I have said this to my partner's heart team) is that without a successful care plan, with carepartners that are not weary or frightened, the patient can not have the best chance at living life.  There are many moments that I feel like a boxer, losing the fight, in the 8th round...reeling from each new punch, trying desperately to keep standing, but wishing it would just be over....

I am sending warm, comforting hugs, and light, to you, dear Linda....you are not alone!  I am here, too!

Hugs, Kathi

KathiM said:

Dearest Linda,

I have traveled both sides of this street...as a patient, and a caregiver.  I am currently in the caregiver role, caring for my life partner who just received a heart transplant 2 weeks ago....he was dying, he had 2 months, when the new heart was gifted.

Caregivers have the toughest road.  They hear EVERYTHING, when the healthcare community is quick to shelter the patient.  But what is not thought about  (and I have said this to my partner's heart team) is that without a successful care plan, with carepartners that are not weary or frightened, the patient can not have the best chance at living life.  There are many moments that I feel like a boxer, losing the fight, in the 8th round...reeling from each new punch, trying desperately to keep standing, but wishing it would just be over....

I am sending warm, comforting hugs, and light, to you, dear Linda....you are not alone!  I am here, too!

 

Hugs, Kathi

Oh, Kathi, THANK you so much for your kind words.  You really do know what it feels like on both sides now.  Since I have not, I can't say if caretakers have the tougher road, I only know how I'm feeling only 8 months into this.  I work full time, have to to get the great health insurance we have.  And while my employer has been great, I know there may come a time when that stops.  I have not taken advantage of their generosity.

All along, my main concern is to get my husband through this and back on the road to good health.  Lately, I feel like collapsing myself, but don't know who would be there to support me.  Yesterday I stayed home sick with a sick headache that gave me an upset stomach.  When I told my husband this, he immediately said "I have a sore throat" so, you see, it is always about him.  I just stayed in bed as long as I could.  Some of his nasty words and actions while on oxaliplatin (and roid rage in my opinion) have pushed other family members away.  I can tell my husband "I just can't do it" about some event he wants me to host and then he just keeps at me and at me, picking a fight, but I hold my tongue and just ignore him.  This is also exhausting.  There are a few things I still take a stand on :-)  He does not work so he has lots of time to think about what I should be doing in my free time.  I am just starting to try to get myself back in order.

I am amazed at heart transplants.  I have watch many shows over the years showing real people waiting for and then getting a new heart.  It must be both fascinating and terrifying at the same time.  I wish your partner good health and good healing from his transplant.

Thank you again, your message made me smile.  I appreciate the hugs.

XOXO  Linda

LindaK. said:

:-)

Oh, Kathi, THANK you so much for your kind words.  You really do know what it feels like on both sides now.  Since I have not, I can't say if caretakers have the tougher road, I only know how I'm feeling only 8 months into this.  I work full time, have to to get the great health insurance we have.  And while my employer has been great, I know there may come a time when that stops.  I have not taken advantage of their generosity.

All along, my main concern is to get my husband through this and back on the road to good health.  Lately, I feel like collapsing myself, but don't know who would be there to support me.  Yesterday I stayed home sick with a sick headache that gave me an upset stomach.  When I told my husband this, he immediately said "I have a sore throat" so, you see, it is always about him.  I just stayed in bed as long as I could.  Some of his nasty words and actions while on oxaliplatin (and roid rage in my opinion) have pushed other family members away.  I can tell my husband "I just can't do it" about some event he wants me to host and then he just keeps at me and at me, picking a fight, but I hold my tongue and just ignore him.  This is also exhausting.  There are a few things I still take a stand on :-)  He does not work so he has lots of time to think about what I should be doing in my free time.  I am just starting to try to get myself back in order.

I am amazed at heart transplants.  I have watch many shows over the years showing real people waiting for and then getting a new heart.  It must be both fascinating and terrifying at the same time.  I wish your partner good health and good healing from his transplant.

Thank you again, your message made me smile.  I appreciate the hugs.

XOXO  Linda

On my experience as a patient.  Yes, there was anger!  I was caring for 2 developmentally disabled daughters, by myself.  I had a successful small computer consulting business, my only income.  I had found a man I enjoyed being with.  My life was FULL!!!!  I remember, as I was lying on a gurney, headed for a CT scan that would show where my rectal cancer had spread (already knew about the 2 inch tumor), saying to the transportation aide "This can't be anything, I have too much to do to be sick!".  I remember he smiled, with a bit of sadness, responding "Sometimes things happen in life that you don't plan for!".

I got MAD!  First, just at everyone and everything!  But then, the look on loved ones' faces, as if I had just slapped them HARD, stopped me.  I then, with the help of a counselor at my cancer treatment center, redirected my anger energy into fighting the cancer trying to steal my life.  You see, when  cancer entered my life, I lost primary control of my life.  I was in considerable pain, at first, my tumor was pressing on my tailbone, so that angered me, too!  To release that energy, I, at first, threw cheap ashtrays against a wall outside.  THAT stopped soon, when I had to clean it up myself!  I switched to throwing pillows....it takes ALOT of energy to do that, with not very much damage.

But my biggest salvation was that I made up my mind that if this beast was trying to win, it would NOT!!!!  I am a person who hates to lose at anything!  It may get control for awhile, in small ways, but not totally!  So, I decided that once a day, I would find something to laugh about.  Some days were tough, believe me (especially when, 6 months after my first dx, I was told about the second primary, breast cancer)!  But laughter, in my opinion, scares the beast...knocks it off balance.  After 20 days of doing something new, it's said, it becomes a habit.  To this day, I still find something to laugh about everyday.

There are 7 stages of grief.  Hold on, I know, hubby is not dying...but grieving can be just a real when your life is turned upside down, and your old, familiar life is gone, replaced with an existence where you see over your shoulder, just out of sight, a big bird of prey following (this is my visualization of cancer).  One of the stages of grief is anger.  The final?  Acceptance...  But this takes time.  It took me much...I kept going between anger and denial, another one of the stages.  Acceptance came, when I decided that cancer got 2 YEARS of my life, and will get NO MORE!  I now live my life, knowing that it could strike again at any time (both were in the lymph system).  BUT instead of feeling sad, I thumb my nose, and live each moment full on!!!!

My final word is, if you are hurt by his words, speak up.  I stand still, close my eyes, and find calm before I respond to my partner (yes, even something as joyful as a new heart carries anger, and fright), and then calmy speak my answer....if he cannot engage me in an argument, he cannot hurt me.  But I usually say something like "I'm not sure why you said that, but that hurt me.  I am pretty sure you did not do that intentionally to hurt me, but you did.  I love you, but I love myself more.  I need you to think about what you will say before you speak it to me.  I am here for you, your strongest supporter, but if you kick a dog, ultimately it will bite back, and I don't want to be that person.  You have enough now, without having to face it alone!"

Hugs, kathi

myd said:

I would like to take the

I would like to take the opportunity to thank you for your responses.  Yes, it is true.  We do not know how much time we have.  I will help her as best as I can to fight this for as long as she wants or better put, her body allows.  Over the last year, I feel to be mourning her although I have not lost her.  I forget to enjoy what we have and get caught up in the not so important things of life.  I think I know what to do, but sometimes circumstances pull me away from that.  Reading your posts give me some perspective and help me redirect my resources in the right direction.  thank you.

myd

Life is fragile and can be taken from anyone at any time. Car accidents are more likely to harm us then our cancer. 

The battle with cancer can and is frustrating. I have told the people close to me, it is my desire to be at functions, but some times my ability is not there. I can run several miles one day and be down for several days with severe abdominal cramps.  It is not my desire to be in pain, it is my reality.

You are a family first and that is your pack.  As a pack you all have responsibilities to the pack. We need to realize that getting back to the basics of being a family and standing as a family will take us a long way in our journey of life.  Cancer will allow your children to see the more compassionate side of the family. We all need to understand the desire and ability of the cancer patient.  

I am sure at times my journey with cancer is harder on my wife then me. I have accepted that I have cancer and what do I need to do to feel better? My wife is stressed every time I am in pain. I ask her to relax and this is just part of the journey.

Best Always,  mike

ron50 said:

And sometimes you just get lucky
I was dxed in 98 with an aggressive stage 3 colon ca into 6 lymph nodes. My story does not really help anyone as one of the chemo agents I was on was banned shortly afterwards due to nasty ,sometimes fatal ,side effects . that was levamisole the other was 5fu which is pretty much the standard for everyone. I had 48 weekly sessions of chemo. An unpleasant time. But here I am over 15 years later ,still ca free with no recurrence.
Although I have had no recurrence I may well still die of cancer or the treatments. I have many ongoing problems that have been grouped conveniently under the heading of auto-immune disease of an unknown nature. Just this week I was sent for nerve conduct tests by a neurologist. He was called in during the tests to confirm the technicians results. My right foot and leg showed moderate neuropathy. My left leg registered no signal. It appears the nerves are all but dead tho I retain excellent circulation in both legs. That was the end of it . The neurologist told me I had moderate to severe peripheral neuropathy, he has no idea what caused it and he can't help me with it. That cost me $600.00 for sweet nothing. My kidneys are leaking protein at a great rate but three kidney biopsies have shown no cause. My pulse has become so bad that I appear to miss every second heart beat. With congestive heart failure and cholesterol over 8 the ectopic heart beats indicate serious problems. My gp and nephrologist both consider it a benign condition. My nephrologist at least had the grace to appear embarrassed when he took my pulse . He asked me if I would consider a couple of weeks in hospital. At the other extreme my gp has not checked my pulse or blood pressure in the last three visits. I sometimes wonder if I may have upset the medical profession by not having the good grace to die of ca as predicted. My survival has been punctuated by a lot of serious illness BUT I continue to survive ,I continue to work and I continue to enjoy my fishing as often as my health allows. Best wishes for some miracles coming the way of your family, Hugs Ron.

I have you in my thoughts, always.  

BIG hugs, Kathi

Live. Let the Doctors worry about the cancer. But you and your wife have a family to raise, fun to have, and sharing your love and committment with each other. I know your anxiety.

Best