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VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I sent my letter of resignation and it will be accepted as of January 7.  Today I get emails shocked my husband is so sick.  WTH?  Now they are going to pretend they didn't know what I was going through (am going through).  I know I am ranting, but don't add insult to injury.  The truth is they knew and either didn't care or didn't want to get involved.  I would have preferred they not respond at all then the many emails I received today.  I had a really hard night last night.  I cried myself to sleep.  The physical nature of taking care of David is hard, the alienation is hard, not having a husband that can give me any intimacy other than holding my hand is hard.  I really needed to be cuddled last night, but even though I broke down on David he still couldn't give me that.  He just said I am so sorry and that he loves me.  Well what a way to put my foot in my mouth.

katenorwood
Posts: 1808
Joined: May 2012

Vivian,

I think that quite a few people we encounter really do mean goodness from the heart.  Unless you're actually living with this type of situation and up close and personal, you are just getting through another day.  We look at life differently....and know how fragile and precious each moment is.  I send you and David my warmest thoughts today Vivian !   Katie

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Agree with Katie and you...

Unless you are going through it, people tend to shut it off, or not get deeply involved... To the point of some ignoring or avoiding you..., most unfortunate, as that's the time you need them most.

I don't believe it's personal, it's just a mechanism to not leave themself open or exposed...or get to close.

Have you sought out any local support groups in your area..., it definitely sounds as if you could benefit, and David as well?

Virtually here for you, but that does little for the physical need for company and support.

Always ~ John

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

It's one thing to not want to get involved emotionally (like that might even happen, since they probably don't even know David)....but after all they have known over the last 6 months, to pretend that they didn't know how grave his condition is...is beyond insult to injury. 

Breaking down, crying yourself to sleep....feeling isolated and alone.....these feelings and reactions are part and parcel of what you are going thru....and I think John brought up a good idea....getting yourself some help in dealing with what you're going thru.  This is an emotional roller coaster...some very highs, and very lows....what about talking to your pastor?  Some church leaders are very adept at counseling their flock....

p

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Our pastor Adam is a nice guy.  He is very young though.  Maybe 30.  He has had a hard time with David's diagnosis.  He has never had a young leader in the church go through something like this.  There have been a couple funerals, but all people in their 80's.  Death is still hard then, but expected.  Adam is very uncomfortable around us especially now that he knows David is going to die.  As far as support groups there isn't much for us.  We don't fit anywhere.  Not really head and neck, not really leukemia or myeloma either. It makes it hard to relate basically having a combination of all three.  He has so many weird needs.  He was the only one on the BMT ward at the hospital with a PEG tube.  They weren't used to people only having a one lumen PICC either, but that was all he was going to need with Cisplatin.  Then you add the very fragile health he is in we really couldn't go to a meeting even if there was one.  I don't have a good answer, I just have to keep praying that I will be strong enough to get through this.

Vikeman10
Posts: 62
Joined: Jul 2012

Vivian, I am sorry to hear how they treat you & act if they didn't know. Unfortunately some people just aren't strong enough to get involved or accept it & will make excuses to get out of anything. You are better off not having to deal with them. As far as support I have been lucky with family as well as the way hospice is helping out with all their involvement & support. I wish I could offer more but do send my thoughts and prayers to you and David.
Randy

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

Vivian,

 

I am sorry about the insensitive nature of people; it doesn’t get any better out here in Oregon. 

 

If I knew how to sew or knit I would make you a quilt from your friends at the H&N forum.  I know from experience their words have warmed me up when needed.  I know it’s not the same, but some how every time Phrannie put me in her pocket I felt better.

 

Best,

 

Matt

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

I agree Phrannie is great, but I can't tell you how many times Matt you have made me smile.  Sometimes out right laugh.  I love your sense of humor and playfullness.  It isn't often I get to laugh anymore.  Everything is so serious and I enjoy fun.  Randy I appreciate you taking some of your very precious time to comfort me.  You are a very special person.

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

Vivian,

 

Thank you, thank you very much.  Some times the “Good Matt” does alright.  Everyone on the forum (from years past too) has touched me in a profound way.  I often am lost for words; these situations are just so difficult.  Cancer is serious enough on its own, I have to relax and feel like my old self sometimes.

 

Your friend in battle, spirit and humor,

 

Matt

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

is this opposed to the "not so good Matt"?  You do have a way of allowing us to smile in spite of ourselves and our tribulations....and I've appreciated that about 1000 times....maybe more!! 

The OCF has a forum just for the caretakers....I know that David's cancer isn't just HNC, but I think what caretakers go thru no matter what type of cancer it is, is much the same...the emotions, the overwhelmed feeling, the grief...the exhaustion.  I'm just taking a stab in the dark....but I think the emotional side of Vivian is in need of support.  The "how to's" of caring for David....giving meds, nutritian....hydration, etc....you probably have pretty well sorted out....I haven't had a single doubt that you are able to care for him....I have worried, tho...that you put yourself on the back burner and stay there and aren't taking care of yourself.

p

sassysrice's picture
sassysrice
Posts: 117
Joined: Nov 2012

Matt

that is so sweet, it made me tear up. You are a special person.

Sue

fisrpotpe's picture
fisrpotpe
Posts: 1321
Joined: Aug 2010

it sickens me the way people react to bad news. they don't belong in your life

don't lower yourself to their low life, be strong! let them go crawl into their own hole

you and David are very special people, non deserving of your situation. 

prayers continue for the two of you. 

 

i worked for the same company for 23 years, when i had another run in with cancer. that was 4 plus years ago. only four people have contacted me since out of the hundreds i knew. i have not been back in their office in 3 3/4 years and don't plan to go back. they don't know what they lost

 

so very proud of what your doing by giving up everything for the love of your life. nothing.... nothing more special than that

 

john 

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

Vivian,
I am so sorry about the dumb things people do and say. That being said, I'm at a loss for words. I wish there was something I could do or say to help make things better for you and David. I do continue to pray for you both daily and find myself thinking of you several times throughout the day. In my prayers I'm still asking for a miracle.
XO,
Billie

Vee1
Posts: 59
Joined: Nov 2012

I am so sorry you have this to deal with in addition to everything else.  The cruelty (intentional or otherwise) is sometimes so hard to bear.  I found myself going through something similar for my husband when he was fighting his cancer (1993-94).  People said the absolute dumbest, most hurtful things.    I will say, I was lucky with my work then.  Well, here it is twenty years later and people are still insensitive.  This cancer go-round with my dad is a totally different animal but I "get" a bit of what you are experiencing...

 

I saw that Phrannie wrote about a caregiver's site and I will check into that for myself as well. 

 

Just letting you know, don't hesitate to write us...there are those of us who sorta-kinda get what you are going through and want you to know we are supporting you in thought and prayer.

 

I know I am not alone.  I feel like I know you and want only the very best for you both.

-V

ausrebel53's picture
ausrebel53
Posts: 74
Joined: Dec 2012

Hi Vivian, you caregivers are so precious to us. My wife spends too much time taking care of me to tend to her own needs, (physical and mental).

I know we all can't express how deeply grateful for the help and love of you caregivers, words just don't seem to cover it.I can only simply say

thank you caregivers and PLEASE look after yourselves too, we can't survive without you and we care about you too if only we could show it more.

Regards Michael

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

popping you back on top

wolfen's picture
wolfen
Posts: 1173
Joined: Apr 2009

I'm finally able to get on the website without having to wait 15 minutes to advance to the next page. Dam# frustrating.

I'm going to second John's opinion about that local support group. Even if David's situation is not exactly the same, I found that patients and caregivers among even a different type of cancer are compassionate, caring, and most of all, have a lot of "warm bodies" who are more than willing to offer a hug, a shoulder to cry on, or even an ear just to listen. I found this to be true when I visited the Esophegeal support Group meeting at the hospital during my hubby's stay. They welcomed me with open arms. So, perhaps if David is not feeling up to it, you might have someone stay with him for a while, and you do this "just for you".

As for your former place of employment, view it for what it was. They were never your "friends" in the first place because a true friend would not treat you that way.

Luv,

Wolfen

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I think Kate is right. Most people are loving and want to help. But they just don't understand, not have made the journey as either a patient or a caregiver. And then there are the many lucky cancer survivers, who are "cured" with one treatment cycle. And that what the public hears about: the successful cases. Well, each decade there will be more successes and fewer failures. That's something anyway. Rick.

luvofmylif
Posts: 344
Joined: Sep 2012

I havent been able to get on the site for awhile.  I was having connection problems and then on top of that would get booted off randomly each time I would try to send any messages. just want you to know I am still thinking of you, Vivian and David and all on this site. Wish I could say or offer something inspirational for you. All I know is that you are going through the toughest battle right now and all you can do is just one day at a time, one foot in front of the other. People of wisdom tell me not to look too far in the future. This moment is the one we must get through.

I know what it feels like to miss your husband, the one that you knew before this terrible disease fell upon him. It is heart wrenching but, you will get through it because you love him. And, in the end love is our greatest gift we can give. 
Cry when you have to...I have done alot of that and I know my situation isn't as tough as yours, but then put on the toughest facade you can manage and keep going forward.

Thinking of you

Joan

Jan Trinks's picture
Jan Trinks
Posts: 453
Joined: Apr 2009

Hi Vivian:

 

So sorry to hear how your work has reacted.  Unfortunately, that seems to be the norm these days.  Consider it their loss!  As far as support groups go, I know that the methodist church here where I live did/does have a caregivers group at one time and some places have cancer support groups.  Just a thought.  We were truly blessed being members of a small church and they were constantly calling or e-mailing during Charlie's illness.  As a matter of fact, the morning after Charlie's passing when I called our pastor, she told me what time she would be at my house to make arrangement and ended up with and "Jan, you're going to get thru this and we're going to help you!"  And boy did they ever!  I truly was amazed and what a luncheon they put on after the service.  Hang in there, you are doing great whether you realize it or not even with all the emotional upheaval you go thru and we're always here for you.  Like John said, it's not the same as the physical comfort and company but I have to tell you if I hadn't stumbled upon this website I would have been a lot worse basketcase than I was!  Take care; enjoy every moment together you and David have and still praying for a miracle!  God Bless!

 

Jan (Basketcase)

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I am sorry about your situation with the people you worked with...sad.  Really sad.

I can't add to what anyone has said, I agree with them all (yes, Matt is funny, always good to be in Phrannies pocket, etc., etc. ) ...

But I did want to say even if you do not feel you belong anywhere (which I understand) I am sure glad you are part of our forum and we accept you and David wholeheartedly.

Still keeping you all on the prayer list ...say hello to David for me...

Best,

Tim

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