The Role of Loneliness in Our Cancer Battle and With Our Spouses

Sundanceh
Sundanceh Member Posts: 4,392 Member
edited March 2014 in Colorectal Cancer #1
Cancer can be such a lonely, isolating disease. Many of us in our lives have seen friendships and relationships dissolve as a result. Nothing really changed in your relationships, other than the fact that you became ill. It is how others dealt with it, or more importantly, did not deal with it, that is the crux of the matter.

The people in our lives, unable to comprehend the consequences of our affliction, begin to seek higher ground and to distance themselves from you. All of a sudden, what you thought were solid relationships, withered and died on the vine.

They didn’t want to bother you they said, but the truth of the matter is, they simply could not deal with it, so they dialed out of your life. You could not make it go away in their timeframe, so everyone just moved on without you. “We wish you luck” or “Keep us posted” become the buzz phrases of the day. They forgot where you lived and couldn’t remember your phone number. Hmmm…

What I really feel and think, is that these are very convenient and easy to use Exit Lines, that those people can use, to get them to the door – and out from under this new placed, heavy burden they did not ask for or wanted - and it gets them very quickly back to their lives.

What’s that old saying? “Out of sight – out of mind…” Oh yeah, that’s the one.

It’s been said that Tragedy will tell you a lot about the people in your lives and the relationships upon which your life’s foundation have been constructed upon. What’s left in the wake of all of this, after they have checked out on you, are the feelings of Loneliness and Being Alone, at a time when you need support and friendship.

What you feel is “abandonment” at a critical juncture in your life, where you thought you would be blessed with resources. Sadly though, you can find yourself on empty and begin to take stock of who you do have in your life – and who will walk with you through this stage of your life.

Now, we all know that friends, acquaintances, and sometimes family members Come and Go.

But, what about our significant others? How important is the role that they play for you so important? What if they check out on you too?

As most of you know, I’ve always tried to use my experience with Cancer for the benefit of my fellow man. I came to the board seeking “Open and Honest” communication between each other – to get to the heart and truth of the matter, or at least the way that each one of us sees that.

You’ve heard me say many times what I have spent my life searching for – the Truth – the Whole Truth – and Nothing But the Truth. Cut through the rhetoric – now just tell me honestly…no judgments – just seeking and gauging others lives to see how well it does or does not match up to mine.

It’s nothing short of the “age old questions about Life and Relationships.” That’s where the good stuff is – it’s getting people to open up and tell you that is the hard part.

Honestly, how are we ever really going to learn from one another, if we don’t tell the truth?

Cancer “stripped me naked” and laid me bare physically and emotionally, so with all of that exposed, I no longer have anything to hide, nor do I walk in shame about too much that has happened to me. I suppose it’s because it broke down all of the pretenses that I thought I knew and held so dear.

In relationships, I’ve often found many falsehoods – for whatever reason, people have a hard time talking about when their relationships have gone bad, or are not doing very well.

It seems that it must be akin to “admitting failure”, or makes one feel like they are less of a person as a result. Yet, the divorce rate is at its all-time highest, so a goodly majority of the population is really not telling the entire story, are they?

That’s a shame, because we have so much that we can learn from one another – seems it is easier to hide it, or just pretend that everything is alright, so that no one will think there is anything wrong. But, who knows what really goes on “behind closed doors.”

A “Relationship” is one of the hardest things in the world to hold onto and maintain – it takes time and patience, commitment and communication to make it all work the way it’s supposed to. It’s hard enough anyways, but throw in a Cancer Dx and it can change the dynamics in more ways than one.

Hopefully when “bad weather” sets in, as it always does at various stages of our lives, the cornerstones of our most important relationships will hold fast, until the “Winds of Change” have passed.

These are critical junctures as the Storms of Life can either “strengthen or weaken” each other, based on many individual factors, some of which are very unique to each couple involved.

I’ve read so many stories recently about love and connection with each other’s spouses that it got me to start examining my own and coming to grips with what has happened to us over the course of the last 6-years of our battle.

Like many of you, we both started out strong – I was determined to whip Cancer and not let it be the epitaph of my life. Kim stayed by me and took the licks right along with me and she stayed by my side. I’ve offered on numerous occasions to “let her out” of all this and go get herself the man that she deserves, without all of my luggage.

To her credit, she had steadfastly remained. I know I’ve let her down in so many ways – too many to count. Putting her through all of this Cancer mess has made me wish many times that she had not married me, and that she would have found a man with no cancer, who would have brought her the security and a better life, that any woman wants in her life.

Cancer takes such a toll on our spouses as the days turn into weeks – the weeks turn into months – the months turn in to years – string 10 years together, you know what you get? A DECADE of your life wiped out.

Since the tornado in 2000 and through the Cancer Wars into 2010, we both have been physically, emotionally, and spiritually exhausted with this fight. We’re not the same people anymore – but honestly, WHO would be?

We’re both “TIRED.” Not giving up, but just dead to the world - tired.

We’ve experienced Recurrence and many setbacks over these years, along with many treatments and surgeries. They all just add up over time to suck the very life force out of you. I know I hear many of you talking a similar story and you’re 1 to 2 years into the battle and want it to end so much.

Well, we do TOO!

“When will it end?” is the battle cry of our community. There’s even been whole posts opened for this subject.

I find that for us, the RIFTS always begin when surgery is looming on the horizon – for whatever reason, this stirs up the demons – or maybe it is just our subconscious feelings that begin to awaken as we acknowledge the pitfalls of what lies ahead with surgeries and recovery.

Naivety and Hope gets you up on the gurney the FIRST TIME – that sense of I’ll just do this and all will be alright and get back to “normal.” We all know that one, don’t we? We must, I hear you talking about it everyday up here.

But, as we’ve come to learn, as the surgeries and treatments mount over the years, we are all not so naïve anymore – we know what we are up against – we know how long the recoveries are going to be – we know what the risks are - and we know we left behind just a little bit more of ourselves behind than we did the last time.

Kim and I are an “Army of Two.” We’re only as strong as we can be for each other, on any given day of the week – any given hour of the day. It changes from moment to moment.

We know that the “Calvary is not coming over the hill.” That’s a tough road to hoe, but that’s the cards we’ve been dealt, so we continue to go it alone and hope we get a life somewhere down the road, before the Roll is Called Up Yonder.

Long ago, I became used to the idea of not having friends and family “really” support us. Oh, they want us to keep “them posted.” That way they can gossip about you, and stay emotionally detached, while not having to leave their houses and their lives to help you “One Iota.”

Best I can remember, the “roads run both ways.” But, it’s always us having to go the distance, nobody seems to want to make the effort to stop over or even call or email. But keep us posted, LOL:)

I suppose it’s normal – just human nature – or is it?

I read your stories about your loving families having dinners, coming by to visit, helping out around the house, calling on the phone, etc.etc. So, that argument does not hold water for our families.

What it tells me is that your family cares about you guys – and what a great feeling that must be. I can only imagine and live vicariously through your posts and wish that this were the case for us. Because what it really says to me is your family is saying “You Matter.” Our families are saying “You do not.” Hey, but keep us posted:)

Maybe what Kim and I refer to as “our family” are just too emotionally vacant to be able to do that – or perhaps their lives are in such disarray, they can’t help it – or perhaps they are just to apathetic to know better – or maybe they are just plain “pathetic.” The answer is probably E – “All of the Above.”

I don’t know – what I do know is that it’s not going to change in our lifetimes – so we are all that each other has to get through this Life and get to the finish line.

So, when I see what this Cancer has done to our relationship, it makes me upset and angry – more importantly HURT.

As I’ve stated many times before, prior to me finding the Board, I spent the bulk of my cancer journey, primarily alone. Kim worked night shifts, so we passed like 2 ships in the night – introducing ourselves on the weekends and getting the chores and errands done. It was not her fault – not her choice – she did what had to be done – and I did what I needed to do – we approached Cancer like a business and took the emotional equation away – at least from each other. As long as I portrayed Strength, it made her feel secure.

Now, privately, I know we’ve both had our moments – many moments I’m sure, we just did not talk much about that. I tried to, but that is not Kim’s strong suit, so I let it lay – but it always hurt me that we could not get really “intimate” with our feelings and talk about what it was that each of us was experiencing.

Over the past 6-months since the DaVinci surgery, I have felt us “slipping away” from each other. We started to “grow apart.” It’s a helpless feeling. Sometimes in life, you are unable to help yourself and if you can’t help yourself, you can’t be of much help to your spouse.

And then you find that bickering becomes the norm and you ask yourself the question, “Do I love this person anymore?” More importantly, “Do I want to be with this person anymore?” Now, this is an equal opportunity question, Man to Woman and Woman to Man….or Life Partner to Life Partner.

And when you can’t find compelling reasons anymore – I can tell you, that’s “scary.” You wake up 20 years later and you don’t know who the other person is that is screaming at you. And some days – you don’t wanna’ know anymore, either.

And I think that the emotional side of Cancer and Finances and how it relates to your significant other definitely plays a bigger role than any of us can ever forecast.

Without this added STRESS that has been added to our lives for many years concurrently, I’m sure this would not seem like the case. But, it’s like “water against the rocks.” No matter how strong you are, you can be beaten down with all that Cancer can bring you and your loved ones.

You’ve fought for so many years – been dealt the setbacks – can’t find the answers – more surgeries to do – more finances to incur. It becomes a “ball and chain” that you can hardly drag around with you anymore.

Both of you are just searching to try and find a “peace” in this world. Since you are the only TWO in the room, each of you get the other by “default” and then you begin to take it out on the other one, because the pain is so raw and it hurts so bad – and you can’t see the day when it’s every going to go away. Therein, lies the frustration and the great Truth. It's become the "norm" and you just can't see past the trees anymore.

Things hit a boiling point over the weekend and we finally sat down and “talked” to each other – we actually treated other with civility. That was nice.

Not too long ago, when we knew surgery was going to be the route, Kim had a meltdown. She said something to the effect, “I’m just so sick and tired of this $hit, just hurry up and die. I can’t take it anymore.”

That one STUNG…I stood there and took that one, because I tried to understand her frustration from her viewpoint. Our lives have been derailed by this disease, and she knew that we were going to lose another six months recovering from the new DaVinci surgery. She was boiling over and I was in the way and caught that one between the eyes – but it did hurt me.

Now, before anyone goes bashing Kim – she’s alone too – no friends and her family, 1300 miles away, have abandoned her too, so she’s got nobody to talk to. I often wish that many of you ladies were close by, so she would have a girlfriend “in the know” that she could talk to when she was feeling blue. Another female to be there with her too.

She’s a good woman – a fine lady – a good wife – a hard worker – a good friend. She’s simply HAD ENOUGH and is at the breaking point. She’s had her own health concerns to fret about as well. And she’s not felt well for the longest time.

How much can anyone of us take is open to speculation, and can only be answered by each individual, so please don't judge her harshly and please continue to be her friend and support her too. She needs a friend – and who better than you guys? Let’s give her a big hug…((((((KIM))))))

We all say things that we “regret.”

I just wish I could make her life easier and tell her that this Cancer and surgery business is O-V-E-R. Maybe, this time will be the last. I know we can’t take too much more – and I know my body can’t take too many more of these “surgery wars” either.

Kim was diagnosed with sleep apnea and she was literally not able to sleep for more than a minute or two at a time. She went to a sleep study and finally got to the bottom of it. She would literally stop breathing every minute or two, throughout the night when she went to bed.

You know what happens when you don’t get your sleep – it knocks your whole body out of whack. You’re moody and irritable and not rested. Her legs were swollen and she was bloated. It’s been very hard on her. She was snoring so bad, and was keeping the lights and TV on until all hours of the morning, I could not get my rest. So, I had to move to the guest room, just so I could get some peace and quiet and enough rest to function.

She just received a breathing machine last week, and it seems to be helping her – we’re hoping it will help her continue to get the rest that she needs. She has stopped snoring – I haven’t, LOL:)

So, I’ve moved back into our bedroom last night and we’re together again. We talked last night and broke the ice between us. I got her to say to me:

“I need you.”

And…

“If you died, my life would not be that much better like you think.”

Kim saved my life 6-years ago by calling the nurse and telling her to keep the colonoscopy appointment I had cancelled that day.

I’ve often asked her if she regretted that decision…stay tuned :)

So, what I was trying to say was how “alone” and “lonely” Cancer can make a couple feel and the toll that it can take on your marriage. It’s as tough as the cancer fight itself. And when it’s only the 2 of you against the world, it can indeed feel hollow and isolating at different times of the journey.

Hopefully, Kim will not club me from what I posted – but she is riding along with me and she’s in it too – and I have used personal illustrations from my own life to show the rest of you, what it is that I am feeling at any given moment.

And maybe by seeing me talk about, you might want to talk about it – and if you do not, then you can draw from it, something that might be happening or have happened in your lives.

Love to all of you guys – thanks for listening – you guys are cheaper than a therapist:)

Wish you lived close by, so we could just do something from time to time. It seems the older one gets, the harder it is to find a good friend.

Kim and I are going to be OK:)

Do you have a story that you want to share?


-Craig
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Comments

  • AnnaLeigh
    AnnaLeigh Member Posts: 184
    Sundanceh - You hear what is inside our hearts
    This analogy is for all members who are struggling with understanding the emotions and turmoil of diagnosis, treatment, family and society's reaction to cancer.

    Just my humble opinion, of course.

    Once upon a time we were all landlubbers walking on solid ground and going through our daily lives without a clue as to what a life on the ocean would entail, or what skills would be necessary in order to survive living in a small, individual sail boat while being subjected to the wide-ranging, powerful, and climatic effects of the sea.

    Suddenly we have been cast upon the open ocean in our little sail boats with no warning, preparation, tools-of-the-trade, or assistance from the seasoned sailors who have lived this life. Upon first glance, there are too many new skills to learn just to keep our sail boat afloat, much less be able to feed ourselves on a day-to-day basis, or make any headway towards land.

    Slowly, out of necessity, we learn which sail to raise; how to steer the boat; how to fish for food; and how to navigate towards safety. All the while we observe others who have been cast adrift at sea trying to manage their individual boats but the communication is limited and advice is of little help because we are all dealing with different oceanic currents, winds, and conditions. Some boats being closer to land and other boats being horribly lost with no indication which direction will bring them ashore.

    Waves of different sizes come our way and bring new skills to be learned. Steer into the wind, across the wind, with the tide, against the tide? Who knows?!? This is a learn-as-you-go situation with dire consequences for those who are unable to adapt or who make repeated fatal errors. Black clouds on the horizon could mean any number of things -including "The Perfect Storm" that will indelibly change our lives again with no prediction of the outcome.

    We want so badly to throw life preservers and bow-line ropes to others who sail beside us. But in our hearts we know we are of no use to fellow sailors if we are not securely anchored ourselves. Two ships that go down together will be of no benefit to the rest of the armada.

    So, we learn when to grip the rudder handle tightly, when to let loose so our boat does not capsize for fighting against the waves and we aim our eyes towards a horizon that offers hope, sunshine and the promise of ports-of-call.

    And we learn not to judge other sailors for taking different routes than ours. After all, don't we all want the same thing? To survive our journey intact and learn how to rejoin the landlubbers after viewing the world from our new perspective. Rainbows, warmth, love, affection and connection all have a vivid new meaning for us.

    Forgive my misrepresentations of the correct sailing terminology. I am not a Captain of the Sea either.
  • Aud
    Aud Member Posts: 479
    Craig
    you made me cry...and laugh.

    AnnaLeigh...Beautiful.

    Oh to be able to scoop everyone up with hugs and kisses to make it all better!! That's the Mom in me. And life isn't like that. (although I do believe in hugs and kisses)

    Craig, it's good to open the Forum to another depth, one of which most of have no desire to explore; but necessary in order to survive, thrive, grow.
    Holding all of us in the Light,
    Aud
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Please write a book
    Craig,

    You WILL write a book, won't you? I think if you wrote a book of your reflections about what cancer does to a person, it would be a huge hit. You'd have your millions and wouldn't have to worry about whether or not there's money for a needed scan. Do it!!!

    My relationship with Bill has been a bit more volatile since the cancer, but we have 34 years in this marriage, and we know a lot about blowing up and then calming down and talking things out. We're here for good.

    I do have some friends who "left" me, so to speak, but then I've had others that have come closer.

    I love you, Craig. You are such an honest, thoughtful person, and I pray all will be well with you in every way possible.

    *hugs*
    Gail
  • momma g
    momma g Member Posts: 6
    Wow, honesty prevails!
    Wow, honesty prevails! Craig, I've been reading this board for months without the courage to comment, but your post deserves a response from even a bystander like myself.

    Keep writing and sharing because your honestly will give strength to all, to address the truths, ugliness and reality of this disease. Your courage to be honest will only help all of us in the wee hours of the morning when we all suffer. Your words and honesty also bring strength, to stay the course and fight. Thank you.
  • Jaylo969
    Jaylo969 Member Posts: 824
    tootsie1 said:

    Please write a book
    Craig,

    You WILL write a book, won't you? I think if you wrote a book of your reflections about what cancer does to a person, it would be a huge hit. You'd have your millions and wouldn't have to worry about whether or not there's money for a needed scan. Do it!!!

    My relationship with Bill has been a bit more volatile since the cancer, but we have 34 years in this marriage, and we know a lot about blowing up and then calming down and talking things out. We're here for good.

    I do have some friends who "left" me, so to speak, but then I've had others that have come closer.

    I love you, Craig. You are such an honest, thoughtful person, and I pray all will be well with you in every way possible.

    *hugs*
    Gail

    A good idea
    Craig,

    Tootsie had a good idea. You could write a bestseller in my opinion. My daughter has encouraged me to do the same thing, but I just haven't a clue as to where to begin.She is graduating in a week, majoring in English/ creative writing, so she says to write what I'm thinking & feeling and she'll put it in order for me. Maybe I will.

    I am only 7 months into this particular saga/journey of my life and to be truthful I am getting weary. I so admire all of you who have just kept on keeping on. You are so strong and it makes me more determined to beat this...or at least make it through the chemo. My body is telling me I have had enough of the chemicals...it can't take much more, and then I read about how some of you are having surgeries, reversals, etc. all of which I haven't had to deal with and my shame at my weakness is great.So I trudge on, knowing that although this is going to take a minimum of one year for me, I have to make the best of each day, one day at a time, and I am thankful for each new day.

    The loneliness you speak of, the loss of 'friends' and relatives has been such a disappointment to me, too.One day after my surgery a 'friend' of almost 40 yrs. called me on my cell phone in the hospital and upon hearing that I was ill with cancer he gave me his version of the last rites. More or less told me it was okay to go ahead and die and my daughter could " take my place"...whatever the heck that meant! Others, upon hearing that I had cancer surgery told me that they have me on their prayer list.I'm on about 50 prayer lists at last count and you know what? Not a one of them have called or e-mailed me to find out if their prayers are being answered. It has just become a catchy phrase many people use to avoid getting personally involved.No offense to anyone who is for real with their faith and prayers, but these particular jokers ain't real. After much hurt and anger as well, I am at peace with what we sometimes refer to as 'human nature'. Many people get scared S--tless at the mention of cancer and most tend to flee the unpleasant situation. If they stay around they might have to think about their own mortality.It's okay with me now, I truly appreciate the 2 friends I DO have and of course the few in my family that care.

    A far as my spouse, he is a keeper:) He is an introvert and nothing has changed on that front. Talking about this cancer stuff isn't his idea of a good conversation.BUT, I absolutely know he is here for me and won't desert me. He is scared too, maybe more than I am because I have an outlet ( this forum ),and he holds it all inside.

    Anyway, enough from me. Seriously, if you feel well enough and have the inclination, I think you could do well writing your thoughts AND having them published.

    Peace and hope to us all.
    -Pat
  • Brenda3.16
    Brenda3.16 Member Posts: 209
    momma g said:

    Wow, honesty prevails!
    Wow, honesty prevails! Craig, I've been reading this board for months without the courage to comment, but your post deserves a response from even a bystander like myself.

    Keep writing and sharing because your honestly will give strength to all, to address the truths, ugliness and reality of this disease. Your courage to be honest will only help all of us in the wee hours of the morning when we all suffer. Your words and honesty also bring strength, to stay the course and fight. Thank you.

    Craig, You truly are a
    Craig, You truly are a gifted writer. You seriously should consider writing a book.

    I am lucky to have my sister, mother, and a couple of good friends who actually "get it". I don't have the energy at 11pm to start talking about my husband, who has been sleeping for hours. I am sorry that you don't have family support, but you do have all of us. Thank you for the beautiful post.

    Brenda
  • msccolon
    msccolon Member Posts: 1,917
    what a post!
    Thank you, Craig, for your honesty. I think you have probably spoken to a large number of us here, struggling along. I have a slightly different perspective. I was married for over 21 years prior to my diagnosis, and the year my marriage fell apart was the year I found out i had colon cancer, and I didn't have a clue as to how hard the battle would be in either case. I said then, and still believe with all my heart, that this battle with the beast would be so much harder had i stayed in that marriage. We all know what a large part stress plays in the weakening of our immune systems, and I had been under a lot of stress for a lot of years. God created me as a very strong and independent soul, and He really knew what he was doing when He did it! I have needed that strength and independence throughout my life, now as much as in prior trials. I too have lost many friends since my diagnosis, and it always hurts. I was just talking to my youngest daughter on Saturday about how lonely I feel sometimes, being a single female, almost 50, attractive, but just not marketable. I live in a very small town and everyone who knows me knows the battle I've been through; they know that I almost died a year ago and I'm damaged goods. I don't even feel like I am able to make a simple "friend" connection with the opposite sex because of this. In her wisdom, she asked me if I would consider counseling. She is so right. These feelings of loss and loneliness have to be dealt with or they will just fester and grow. I am sure much of how I feel is as much in my head as in others'. No matter how independent we are, we humans are by nature social creatures; too much isolation only adds to the stress, something which we already have enough of!

    I guess what I'm trying to say is whether we are struggling in a domestic relationship, family relationship, or close friendships, there comes a time when an outside perspective is what is needed to pull everything together. We can't always handle everything just because we WANT to handle them. This media is a wonderful tool, especially when caring and insightful people such as yourself take the time and have the skills to bring to light those subjects closest to our hearts. HOWEVER :) I believe there are limits to this media's ability to meet our deepest needs, the need for real human contact, the ability to see emotion on the face of another human being, and for them to see ours, as we discuss those things that hurt us the most. The comfort and healing that comes from the touch of another as we hug.

    When I am in treatment I maintain an online blog for 2 reasons. First, it allows me to get the thoughts out on "paper" so they don't stay in and fester. Second, it allows my loved ones to know what is going on inside my head as well as in my body, without having to worry about "bothering" me when I'm not feeling well. As helpful as journaling is, it is so much more helpful when one of my friends or family members comes to visit, even if it's just to watch me sleep on the couch while they knit or do my dishes or try to talk me into allowing them to vacuum! I know my sisters are available on the phone at any time of day, but there are some things that I can't tell them! Some things that would scare them if they knew. This board is a good place to discuss some of those things, but even then, some things just can't be said. The advantage of a counselor is twofold; they are strangers, and they are professionally trained to get the hard stuff out of you even though you are sure it's buried too deep to come out!

    I'm rambling now, so I think I'll close! Take care and I look forward to more posts in this thread!
    mary
  • LOUSWIFT
    LOUSWIFT Member Posts: 371
    Well done
    You search for the truth-a pragmatist. I think you know exactly where it is or you couldn't put it to words. Hope may be eternal but reality hurts so we try to shield those who love us from our demon by pushing them away and questioning what got us as far as we have come...Well said Craig! Lou
  • robinvan
    robinvan Member Posts: 1,012
    Thanks again Craig...
    ...for sharing your experience, vulnerability, and wisdom. And thanks also to others who have shared deeply in response to Craig's invitation.

    I think a lot of people honestly don't know how to respond to those of us with life-threatening and life-limiting diseases. Many people are afraid of cancer and honestly don't know how to be present in a helpful way. I have experienced a wide variety of responses from friends, family, and colleagues. Not all positive, but mostly so. Some people have a natural and wonderful capacity to enter into our space and embrace us as always. For those who don't, I don't think it is always that they don't care, but rather they don't know how. It can be difficult.

    I find it particularly challenging with colleagues since I am sidelined vocationally. It becomes harder to relate with those for whom the context of our relationship was "work". This is a significant area of loss and loneliness, loss of work, colleagues and all the meaning, purpose, and identity that goes with. (It may ultimately be a "false identity and purpose" but it is often all we have!)

    I am lucky in that I have a small group of very good friends who I relate closely to on an individual level. This means I usually have 1 or 2 lunches, coffee's, or walks per week. These are solid intimate relationships with men with whom I share deep connections and spiritual affinities. Soul mates. (if I can say that here!)

    Likewise Pam and I have a small group of "couple" type friends who we can rely on for excellent company and social life. And we belong to communities (church and work groups)who provide enough of the broader social contact like Christmas parties and so forth.

    Pam and I have a solid relationship and have 3 lovely daughters nearby. They along with their partners are a big part of our lives and we have regular family celebrations for birthdays, anniversaries, and community festivals. There is always something!

    Pam "limits" her involvement in my illness by insisting that she is NOT my "caregiver". Not that it limits her stress. She says "I am your wife, NOT your caregiver. You have doctors, nurses, and other clinicians to be your "caregivers". I think she reacts a little too strongly to the word. That said, she does take pretty good care of me! Just don't call her a "caregiver"!

    Overall, I've been happy with the pruning that has happened in my various relationships. I do have loneliness, but I also enjoy a healthy sense of "solitude". As an introvert, I can happily go for days without much contact. And I've always got you folks!! Yeah!

    'nuff said... Rob; in Vancouver
  • Kathleen808
    Kathleen808 Member Posts: 2,342
    Craig
    Craig,
    You and Kim have been through so much. Your love and commitment for each other is obviously very strong. I know what you mean by burn out and too much. As you know, **** was diagnosed in January 2009. However, we have been caring for our daughter with special needs since 1997. We love her more than anything in the world (well the same as her sister :) ) but at times we are totally exhausted. I think we have found what you have found which is at those times you dig deep, go to our faith, reach out to those around us and just hold on until things come back up. **** and I try to remind each other that we are on the same team, working for a healthy family. We are working toward physical, mental and spiritual health for all of us and we can get there best by working together.
    You and Kim are truly amazing for making it this far. I am so happy that you are working things out. You need each other. You are both incredible people.

    Thinking of you.

    Aloha,
    Kathleen
  • ron50
    ron50 Member Posts: 1,723
    sometimes the choices are just made for you
    I was probably born with more company than I have ever had,I suspect I will die alone. One of the problems I have had with twelve years of survival is twelve years of ill health. I have coped with it,simply because I have had no other acceptable choice. I have toyed with many of the un-acceptable ones but sanity has managed to just prevail.
    My wife literally got sick of me being sick. I can't blame her she carries a lot of baggage from her chilhood and things that her father did that were just so wrong the scars will never fade. I thought she just needed a break but she had found someone else. She is not happy and is sorry to say the least at what she has done to me. We are still friends and she maintains that one day when she gets out of the bad place she is in she will ask me to come home. As much as I love her I don't believe it will happen.
    Sooo for the last five years I have lived alone. I don't crave company ,I've had enough physical and mental hurt for one life. Last night just about summed up my life. I've been told by my gp to eat certain foods because they are natural anti-inflammatories. One of the best is New Zealand green lipped mussels. I had some at 8pm last night. By 9pm I was just about unconscious on the toilet floor from non stop vomiting. I was just able to call emergency , triple 0 in aust. The ambulance arrived and i continued to faint and vomit alternatively on the way to the hospital and for the next couple of hours. I eventually cleared everything I'd eaten in the last week and was stabilized with meds then re-hydrated. They were in need of the bed by 3am in the morning so I was put in a cab and sent home. The cab driver asked who was looking after me. I said you are looking at him.
    I guess thats the way things were meant to be. I may not be the best person to look after myself but if things go wrong I always know who to blame. Ron.
  • Eltina21
    Eltina21 Member Posts: 173
    Loneliness in our cancer battle
    Dear Craig,
    Your story was very moving. Thank you for writing it. GOD does not make mistakes and as you said Kim is with you in your journey. You two are growing with faith, strength and love. Its okay to vent for this way you are able to move on. I am new to this website and I am very thankful, for here I am able to discuss issues that I cannot discuss with my family. My roomate from college had breast cancer, another friend had bladder cancer and I colorectal cancer. As we go through our different procedures, I just told them that medicine is fixing us up to become the "Bionic Golden Girls." Stay positve and have a wonderful day.

    Peace and Blessings,
    Karen
  • khl8
    khl8 Member Posts: 807
    Craig,
    Your post is so true

    Craig,
    Your post is so true and sadly, all too much of a reality. I have had some of the same issues with my spouse. I am tired, he is tired and this damn beast is so hard to fight. I think that we take the vow " in sickness and in health" we are so naive about what can really happen. At that moment in time when you commit yourself to that one person, you never truly think about what that vow means. The vow should read "in health and when your world turns upside down and you are going from doctor to doctor and surgery to surgery and having poison pumped into your body, when you have horrid mood swings from not feeling well, whenyou cannot have sex because you are tired or too sore, and you never want to leave the house and you are on pins and needles waiting for test results. Then repeat this all when and if you have a reacurance.
    THAT is what should be in the marrige vow.
    It is hard, I have looked at my spouse and wonder if he can take anymore, then I wonder If I can as well? We have had issues before I got sick and there are days when I wonder if this is how I want to spend the time left that I have on Earth. Don't get me wrong, I love him, but is it enough?
    Thanks for being so honest with your thoughts Craig!
    Kathy
  • KathiM
    KathiM Member Posts: 8,028
    I'm sending warm hugs...
    to both you and to Kim.....caregiving, watching and standing by anxiously, is the worst...

    RE:Kim's apnea: My beau was also dx'ed with it, but later...by the time we knew what it was, he suffered from permanent heart damage...sooooo, you saved her life, dear soul!!! And, as a sleep partner to a person with a CPAP machine, I am now so accustomed to the 'white noise' of the air, that it's hard to sleep without it!

    I'm always up for a funny one-liner so here goes:

    I always say to people, when they know my beau's and my story, 'we should be invited to every party you ever throw! Why???? Because between the two of us, we have the two top killers: heart disease and cancer. So, we reduce the rest of you all's odds by being the one-in-whatever in the stats!'.

    BIG, WARM, Fuzzy hugs my dear friend!

    Kathi
  • John23
    John23 Member Posts: 2,122
    Loneliness in our cancer battle?

    Gee Craig, you oughta' see what loneliness really is, when you
    decide -not- to use chemical therapy or radiation to fight cancer.

    You oughta' see what the feeling is like, of being treated like a fool
    for trying to fight cancer with other than the "approved" methods!

    And you oughta' have a chance to see how families of friends treat
    you for attempting to convince their loved one to try something other
    than the chemotherapy they have been using. Especially so, when after
    being declared "NED" thanks to chemo, they die from brain tumors
    that went undetected.

    You should feel the rejection of the families of those that have had
    their loved ones die, after years of chemo and mainstream care,
    when they see you still alive and well.

    And you should have a chance to know what it feels like to get
    a cold, or not feel well, and have neighbors, friends, or family
    suggest that maybe you should consider trying chemo, since
    what ails you could be cancer......

    I cringe whenever I hear or read someone rallying over what they
    determine as "NED"; Technology can't differentiate between a single
    cancer cell and a normal one - what is there to celebrate?

    Yes, you're right Craig..... It's a lonely world we live in; it's a callous,
    brainwashed, insensitive world, geared to accepting the hype of
    well-presented and funded bologna of the industrial giants, and rejecting
    all else.

    It leaves many, many of us out in the cold, while we watch our friends
    pass on, never knowing the loneliness of our choices....

    Choices that may have managed to keep us alive.

    I am fortunate to have a spouse that has supported any choice I have made;
    it is the best a care-giver could ever do for a loved one.


    I wish I had a magic wand...... but all I have is a keyboard.



    Better health to all !


    John
  • lisa42
    lisa42 Member Posts: 3,625
    Craig
    Oh Craig,

    Thank you for pouring your heart out here. Yeah, like you said- cheaper than a therapist :) I, too, would like to share more, but my crazy life today and all this week won't allow it at the moment. As it is, I'm going to be late for my onc appt after sitting down and reading this. Gotta run, but I just wanted to say that I read this and appreciate it and can relate to it. I'm "just" 2 yrs, 9-1/2 months into the fight, so I can only imagine what another three years will do to that tired feeling I already have (and so does my family).

    Huge hugs to you Craig, and to Kim, too.
    I will write more later-
    Lisa
  • Eltina21 said:

    Loneliness in our cancer battle
    Dear Craig,
    Your story was very moving. Thank you for writing it. GOD does not make mistakes and as you said Kim is with you in your journey. You two are growing with faith, strength and love. Its okay to vent for this way you are able to move on. I am new to this website and I am very thankful, for here I am able to discuss issues that I cannot discuss with my family. My roomate from college had breast cancer, another friend had bladder cancer and I colorectal cancer. As we go through our different procedures, I just told them that medicine is fixing us up to become the "Bionic Golden Girls." Stay positve and have a wonderful day.

    Peace and Blessings,
    Karen

    This comment has been removed by the Moderator
  • betina61
    betina61 Member Posts: 642
    Great post!
    I wish I could express my feelings the way you do,but anyway English is my second language.
  • lisa42
    lisa42 Member Posts: 3,625
    lisa42 said:

    Craig
    Oh Craig,

    Thank you for pouring your heart out here. Yeah, like you said- cheaper than a therapist :) I, too, would like to share more, but my crazy life today and all this week won't allow it at the moment. As it is, I'm going to be late for my onc appt after sitting down and reading this. Gotta run, but I just wanted to say that I read this and appreciate it and can relate to it. I'm "just" 2 yrs, 9-1/2 months into the fight, so I can only imagine what another three years will do to that tired feeling I already have (and so does my family).

    Huge hugs to you Craig, and to Kim, too.
    I will write more later-
    Lisa

    more thoughts
    I'm home again (with a 40 minute space between getting home from the onc and leaving again to go pick up a carpool of 6 kids). My onc appt went fine- just changing my schedule up a bit & am switching from 5FU pump to Xeloda, adding in Avastin again, and keeping on w/ the gemzar. Anyhow, back to this subject...

    Craig, it breaks my heart to hear the heartache you're experiencing- and your wife Kim, too. As I said before, I'm "just" a little shy of 3 yrs into this fight. I, too, at the beginning was fighting hard & had every hope to become NED right away & never thought I'd still be doing chemo for so long. You and Kim have been dealing with all this more than double the time that I have. It's really too overwhelming for me to think ahead and think about how my husband and kids will deal with this as it stretches on and on. I, of course, hope and pray that it stretches on, as the alternative of dying before then is not a thought I embrace, obviously. I can relate to how you talk about your wife kind of treating it all as business and leaving it behind emotionally. I know my husband does the same thing. He just can't handle hearing about it. I always cringe when we're out together and someone comes up and asks me how I'm doing. I try to make my answer short, quick, and then find a way to change the subject to something else. Some people don't get it- they go on and on with what they think I should try, what so and so did and they're now cancer free, and have I ever tried ---, etc, etc. After three years of this, I do not want to hear anyone's unsolicted advice about how to cure my cancer, thank you very much! I think a little bit of my husband dies inside each time he hears someone talk about it. The reality that I may not be around forever is too difficult for him. It's obviously not great for me to think about it either, but he'd be the one left behind to deal with life and to raise three kids alone, not me. It really is harder that way on our loved ones. I almost said on our caregivers, but I don't think of my husband as my "caregiver". I know he loves me, but I'm my own caregiver and I'm also "caregiver" over my husband and three kids- all of whom deal with depression (or DON'T deal with it, I should say). It's not easy living in a home with 4 other individuals who suffer from depression- it definitely brings me down a lot. I find that I'm the one (yeah- me, the one with cancer)- I'm the one who is the glue that holds my family together. I thank the Lord daily (often numerous times daily)for continually giving me physical, emotional, and spiritual strength. It's not always there, but fortunately those days are not nearly as common as the ones where I'm feeling uplifted. Back to my family of depressed people... my 17 yr old son is actually doing much, much better lately. We've had some great talks. He won't see a counselor, but he does talk to me more lately & that helps & he's doing a lot better in school now and even has a job (whoopee!). My husband has his ups and downs, as has been the pattern over the years (married 19 yrs). His good and down days are about 60-40, which is a huge improvement. He won't take any kind of antidepressant, having not had success w/ them 2 other times. Yes, there's new stuff out there, but I know he will not take anything. Sam-e is something you can get over the counter & this has been pretty helpful to everyone in the family in the past several months. My son seems to have benefitted the most from it (google sam-e if you're not familiar w/ it and are curious). My youngest daughter (age 10) also is taking sam-e. It helps some & we know that it does because we REALLY notice the difference on the days she forgets to take it. Her issue is more anxiety and anger & the sam-e does help with that. She (10 yr old) is going to a counselor and it also is helping. She had an appt yesterday & didn't want to go. Afterwards, she told me, "Mommy, if I try to get you to cancel it next time- don't do it- I need to come here and I like my counselor- so drag me here if I don't want to come next time." She's funny sometimes! We have had great spiritual talks lately, too. My 10 yr old seems to have the wisdom and maturity of a 30 yr old at times. Sometimes kind of scary almost. My 14 yr old daughter is having the hardest time of anyone in my family lately. 14 is dang hard anyhow with friend relationships, hormones, etc., but she has also been hit even harder with what seems to be something similar that my husband experienced as a teen. When he hit adolescence, he went through kind of a break down. He had been straight A's, in the mentally gifted class, and suddenly when asked something as simple as 8 + 4, he'd just go blank and not be able to do anything. That's kind of what my daughter is experiencing, and it seems to have started almost a year ago. She was a very good student, never had attention issues, & now she can't remember ANYTHING- her math tutor comes, she seems to get it- then she takes the test the next day and gets an F. She can't comprehend anything she reads. Last night, for example, she needed to finish her very major project on the Halocaust and Anne Frank. Her 8th grade class visited a museum in LA that featured lots of Halocaust displays. One small part of her project was to write a 2 page reflection on the museum field trip. She asked me "What was the museum even about?" I don't know- I wasn't there! She literally could not recall what it was about, anything she saw there, etc. I looked up the internet website on it & got the info for her there. She was totally incapable of writing her 5 paragraph essay on the gas chambers. She acted like she didn't know the first thing about how to do research, or even how to read and understand anything. If you worked w/ her, you would think she had definite learning disabilities, but she never did before- you don't just "get" learning disabled overnight. I have to believe it's all mental/emotional issues that are taking up her mind and concentration and not allowing her to absorb anything else. I HAVE taken her to her primary doc and to a phychiatrist. They really were not much help. I've had two appts since with a counselor for her, but she locked herself in her room both times until it was past time leave and then I had to call and cancel (amazingly, they didn't charge me). How do you get help for someone who won't talk about anything and won't get in the car and go get help?? My husband is no help with this w/ her because he can't deal w/ his own problems & tells me to just "leave her alone- she'll get over it".
    Okay- I know I've gotten off subject here by going on about my kids and daughter's issues, but it's all STUFF I'm dealing with, in addition to my cancer, chemo, scans, etc.
    God CAN'T let me die because I have to be here for my family!!
    I'm doing fine, not going anywhere now, but man, it's hard!!

    Friends don't want to hear all this- so I don't bother trying to tell them anymore. My mom is helpful to me, but I can tell she feels too burdened to hear it all, so I don't share it all anymore. I know what you mean about some friends and family acting like they're interested, but just say "I'm thinking of you" or "I'm praying for you" & I know darn well who the ones who really are thinking of and praying for me vs. the ones that just are saying it to sound pleasant at the moment. They are the same ones who don't call anymore because they "don't want to bother me". One of my sisters in law never calls me anymore. She's fine when I call her & we talk, but she never calls me anymore & it does hurt. My supposed best friend from elementary, jr high, high school, and beyond, has seemingly disappeared from the face of the earth- from my part of the world, anyhow. She actually did send me an email about a year ago & did not once ask me how I was. I guess she doesn't want to hear. I try not to judge her too harshly, but it is hard, because I know I wouldn't be that way if she was the one with cancer.

    Interestingly, most of the people around me who are so supportive and do call me are people I've really just gotten to know in the past 2-3 yrs. The ones I've known for ages show up or call very, very rarely now. They're probably just waiting to hear the "bad news" about me & figure it's just a matter of time. Maybe it is- but so what- I'm here for now & am living life! I just realized this past Sunday that I don't think my pastor will ever get beyond saying to me with a sad face "I'm praying for you." I know and believe he truly means it and cares, I just wish that I could be a person that isn't "marked" as "the lady with cancer".

    Well, now that I've gotten some of my feelings out, I do feel better again.
    Yeah, Craig- it's cheaper than a therapist! (I have to save my time and money on therapists for my kids- can't get to one for myself- lol!) That's one thing I do love about this board- you are all to listen & you do it well!

    Ok- now I'm off to take care of puppies and kittens and clean things up a bit before I go pick up the carpool of kids.
    Fight on, everyone & let's always allow each other to be here for each other!

    Hugs,
    Lisa
  • robinvan
    robinvan Member Posts: 1,012
    ron50 said:

    sometimes the choices are just made for you
    I was probably born with more company than I have ever had,I suspect I will die alone. One of the problems I have had with twelve years of survival is twelve years of ill health. I have coped with it,simply because I have had no other acceptable choice. I have toyed with many of the un-acceptable ones but sanity has managed to just prevail.
    My wife literally got sick of me being sick. I can't blame her she carries a lot of baggage from her chilhood and things that her father did that were just so wrong the scars will never fade. I thought she just needed a break but she had found someone else. She is not happy and is sorry to say the least at what she has done to me. We are still friends and she maintains that one day when she gets out of the bad place she is in she will ask me to come home. As much as I love her I don't believe it will happen.
    Sooo for the last five years I have lived alone. I don't crave company ,I've had enough physical and mental hurt for one life. Last night just about summed up my life. I've been told by my gp to eat certain foods because they are natural anti-inflammatories. One of the best is New Zealand green lipped mussels. I had some at 8pm last night. By 9pm I was just about unconscious on the toilet floor from non stop vomiting. I was just able to call emergency , triple 0 in aust. The ambulance arrived and i continued to faint and vomit alternatively on the way to the hospital and for the next couple of hours. I eventually cleared everything I'd eaten in the last week and was stabilized with meds then re-hydrated. They were in need of the bed by 3am in the morning so I was put in a cab and sent home. The cab driver asked who was looking after me. I said you are looking at him.
    I guess thats the way things were meant to be. I may not be the best person to look after myself but if things go wrong I always know who to blame. Ron.

    Yech!
    Ron,
    This sounds like my reaction to clams and scallops! Is this a new allergy being discovered? Sounds horrendous!

    Rob; in Vancouver