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Feeling alone

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

I am feeling very alone in this whole careing for my husband.  He has had stage 4 colon cancer for 6 years now.  He has had every chemo for his illness and all worked, and then he would become toxic to them or they would stop working.  We are now seeking out clinical trials trying to prolong his life.  Although i have many family members and a few friends - all of which said call anytime, we will help with anything.  But when i call, they are busy and say can i help next week, then next week comes and they have forgotten they offered to help.  It is just me and my 25 yr old son here to help my husband.  I do appreciate the help that my son offers, i definetly do not want him feeling that this is his responsibility.  When i was his age, he was 3 years old and i was caring for my ill mother who also had cancer - i know how it feels to have that burden thrust upon me, which i do not want to do to him.  He will help if i ask him to help, but he doesn't freely volunteer to help.  My sister (who lives in Canada, and i live in the US) says call me anytime if you need to talk, but you know you can only talk so much about it. when i do talk with her all she ever says to me, oh my husband had that problem (her husband also died of cancer) we did this. that's fine, but her husband had melanoma, my husband has colon cancer - whole set of different problems and symptoms.  i'm just so frustrated, my husband is in pain and we can't seem to get any help. I feel as though we have been thrown to the wolves to fend for ourselves.  After our clinical trial consultation, in which they found a trial that my husband can participate in, we went back to his oncologist to get her opinion, she says to us, did you ask how many people they had in the trial already? i said no, i didn't know i was aloud to ask questions like that. She said oh yes, you can ask anything.  Well you know what, no one told us that, no one even suggested questions that we should ask. i am frustrated with this whole process and situation. I don't know what to do; people ask me all the time, how is your husband? when i tell them, all they say is we will pray for him. Yeah, that's great and i appreciate it, but really that doesn't help right now. everyone is just writing him off, i am not ready to lose him and he is not ready to go. oh what the hell, i don't know what to say or do at this point.

Thanks for listening to me whine.

Sandi

lp1964's picture
lp1964
Posts: 1238
Joined: Jun 2013

Thank you for sharing your frustration, because you speak for so many people. This illness takes a toll on everybody and it is a fine balance to deal with it and also try to live a life that is still worth living. people have their own problems and that comes first to them. They will put yours second even with the best intention. The other thing they do is respond with similar situations in their own life wich  is also common. 

This is hard, but we have to take the best option we got and try to make it better. Sounds like you and your husband is a great couple. Seek out the good things in your life and stop to appreciate it. Every day we have wonderful things happening to us, but a big burden like illness covers them up. A good meal together, a walk, a card game can be great, but we have to make an effort to fill our days with good stuff so we can deal with the bad.

God bless all three of you.

Laz

Trubrit's picture
Trubrit
Posts: 4845
Joined: Jan 2013

Sandi, I can hear your pain and frustration, and I feel for you deeply. 

It sounds like you may not be taking enough time for yourself. I know, you may ask 'How can I?' But truth is, you have to, for yourself and for your dear husband. 

I understand the frustration, especially when we hear words but do not see actions. 

I am glad that you have come here and vented. Sometimes writing our feelings down, can release allot of our stress. 

I do pray that you can take time for yourself, take a deep breath, and plow ahead along this road.

Good luck with the trial. I hope that it brings relief from some of the pains and stresses of this disease. 

I will pray for both your husband and yourself. 

 

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

It's not exactly fun being the person with cancer, but having been on both sides of this particular fence, I have to say I think it may be hardest for those who love us cancer folk and try to take care of us.  It's really awful to watch someone you care about suffering and be unable to do anything about it.

And doing it for years, as you have, is just utterly exhausting.  I would 2nd trubrit's suggestion to try and take a break once in a while, give yourself a chance to take a few breaths.  Even just a couple of hours here and there might help.  I was always glad when my husband took time to do something on his own, because I knew it was very much needed.

Is your husband able to be alone?  Or does he need to have someone with him at all times?  Maybe some of those people who said they could help would be willing to help you out with some respite care.

The other thing I would suggest is to check to see if there are any caregiver support groups in the area.  These can be very helpful, as you can share your feelings in person with people who understand.

Of course, you always have us too...it's ok to come here and vent whenever you need it.

Big hugs to you~AA

PS one last thought...if your husband is having a lot of pain, I would ask the onc to help with this.  Comfort care is an important part of the cancer journey, and it doesn't mean you are giving up.  Pain makes it so much harder to find the strength to fight on, so getting a handle on it is critical.  Pain management/palliative care docs can really make a difference in quality of life.

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I understand your situation.  While my sister's cancer was different (uterine), the support and help and information issues are the same.

I am curious about why the onc. wanted to know how many people were in the trial.  Does it matter?  You can always bring up questions thru the process, so don't feel as if you have not covered all the bases.  Was the doc possibly trying to discourage entering the clinical trial?  I guess the real question is does your husband want to do the trial. or does he want to retry something he has already been on. or does he want to stop treatment and only recieve pallative care?

Is there just one friend who you could ask to "beat the bushes" so to speak to get volunteers to help you...bring in meals, etc.  Sometimes it is easier for someone a bit removed from the crisis to get folks to help.  Having a list of what things would help you is definately a starting point.

If that type person is not available, try contacting the oncologist, social services, American Cancer Society to see if they know of any resources who can help.

I can also relate to the pain managemet issues.  Unknown bone mets had my sister in terrible pain for over a month.  The last resource was to take her to the hospital ER and tell them she was not leaving until the cause was found and the pain treated.  The ER doc found the mets and she was in the hospital for 10 days while they tried various combinations of meds to get things under control.  She was on multiple meds for the pain with morphine for the break thru pain as needed.  She also suffered greatly with nausea from the treatments and meds.  They finally prescribed a medication which is used with pregnant women that you rub on the wrists.  Worked like a charm.

I wish, as I am sure many here do, that I were closer to offer you a hand.

While you may be reluctant to call you your son, at least let him take over for an hour or two while you get out and have some you time.  It will help you to deal with things better.

Hugs to you all,

Marie who loves kitties

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Sandi.  I lost my husband eight months ago tomorrow.  I remember those feelings that your having.  Unfortunately, I don't have many words of wisdom.  It's just a very tough situation that people can't really understand until their in it.  It's a lonely place.  A lot of pressure too.  I'm sure you feel your husbands well being is in your hands.  Insist they manage the pain.  There is no reason for him to be suffering with pain.  A mistake I made was focusing all my thought, time and energy into finding that new treatment to keep him alive that I didn't enjoy with him the time he had left.  One of my many regrets.  I have a CSN friend who had been through it, advising me to enjoy this time with him.  But I just couldn't do it.  Too focused on trying to fix it.  Sorry you're going through this crap.  Six years is very impressive!  Sounds like he's a really special guy.  

 

Chelsea

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

What a difficult path caregivers must travel.  I could have writen your post a few years ago.  I, also, was pretty much on my own with George's care, appointments, research, etc.   Until you do it, people just do not understand.  You call someone and in a snap the conversation is all about them, how they get night sweats, their knees hurt and had to have a shot or worse, they tell you all about their wonderful vacation.  What you want to hear is how about I take you out for lunch on Monday, or whatever.  You are exhausted, frustrated, not properly informed, and so much more.  You are not alone.  Many of us have been there, done that.  No specific words of advise, except you hang in there, do the best you can and know that everything you do for your husband is so very appreciated by him and in the end, that is all that matters.  

Take care - Tina

Dyanclark's picture
Dyanclark
Posts: 296
Joined: Apr 2012

My situation is similar to yours.  My husband is still doing chemo and for now is stable. Long term outlook is not good for him. 

I don't think we always have the answers sometimes you are alone.  Many times I feel overwhelmed and panicky.   For me I just pray for strength to get thru the horror of it all.  

My sister lost one of her sons to cancer in 2009.  Death is something we don't want to accept, it is our worst enemy.

 

 

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

Thank you all for your comments and advice.  My husband is able to be left on his own, and i go to work full time everyday. I spend evenings and weekends with him.  He is still able to drive and i try to get him out of the house on the weekends when the weather is nice.  Our problem right now is, that he is unable to eat - i shouldn't say that, he is unable to eat more than 2 -3 tablespoons of food at a sitting.  We have figured out that he is able to eat soft food several times a day.  He is, as he says constipated and i keep telling him - little in, little out. I got scared because i saw him naked for his shower on Saturday and he has lost so much weight, that scares the hell out of me.  We watch movies together and we talk and i take him for little walks in the back yard with the dog. The dog gets so excited when we come out side with her and she loves to sit on his lap outside.  Yesterday we were outside for over 2 hours, he loves to "supervise" our son when he is doing yard work or working on the cars. And he says he is feeling better today. We figured out that his Hiatal Hernia is what is bothering him in his stomach - so he is going to see the gastroenterologist tomorrow to get some answers, perhaps he will be able to help us more than the other doctors.

Now, as for his onc. she is encouraging him to participate in the trial. she has encouraged him from the very beginning of his diagnosis, she is the one we have to thank for keeping him alive this long. She calls him her star patient and has a soft spot for him, they all do in her office; which is why we are surprised of how we are being treated right now. but oh well, we will get over it, we will deal with it.

Last night i couldn't sleep, and my husband said to me - go to sleep, i'm not going anywhere. I can't tell you how much that simple comment calmed me and i was able to go to sleep. I have waited a very long time to meet the right man, and he is one of "those" perfect husbands - the ones women only dream of. I am one lucky girl to have met him, my only regret is that we didn't meet sooner so i would have had more time with him.

Thank you all for your kind words. I will try to keep you all informed.

Sandi

 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

So sorry to hear this.   If I may suggest some bland food, I could eat flour tortillas and slightly fried potatoes in a bit of oil. Also home made chicken veggie soup and smoothies. The smoothies have berries, apples, and spinach.   Really anything that is great for the immune system. I was losing so much weight also and worked full time 4, 10 hr days to make up for chemo. I also commuted 2 hours a day, I had to do something. 

 

If you are in a canabis state, it may help with the appetite too. 

Constipation, Miralax helps, and ONC had me on it daily, especially when on pain pills. For the bad constipation, I used Ducolax and child suppositories.  

 

Just  some suggestions.   Where do you live? 

 

 

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

Hi Sandi,

I'm not a caregiver, but I wasn't able to eat anything for months at a time. I'm 5'11 and got down to 89 pounds at my worst point. I almost died. I'm now doing much better and I have some advice about what worked for me. Don't let it get out of control before you DEMAND help. I got so thin that they couldn't get a feeding tube in through my abdomen; if your husband has a port, it can be used for TPN, which is IV nutrition and he can eat as well. Sometimes the IV site can get infected so this isn't the best long term solution, but it will keep someone from starving to death. Get him some nutritional drinks like Ensure or (you can do this) I got so skinny that I requested a feeding tube! I waited too long and they had trouble doing it. As far as eating goes, I don't know exactly what's going on with your husband. I've never had a hernia, but I'll tell you this; I'm not in a medical marijuana state but it literally saved my life. I took everything the doctors gave me for nausea, couldn't stop throwing up after radiation damage to my intestines. I've gained 50 pounds and gotten off of hospice...one of the main reasons is because I could eat again. I say do what you have to do if it's life and death; those people who oppose medical marijuana aren't dying from starvation! Bless you and your husband. I know you feel alone sometimes, but we are all with you in spirit.

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

sandi, i don't know what it is like to be caregiver, but my wife, my caregiver, my life sharer, my hero, means more to me now because she stuck with me through it all and poured into my life health, encouragement and sound reason.  i can't imaginewhat it would have been like to go through it all without her.  in fact, when i reflected on it when i was going through treatment, if she was not going to be there i was thinking i would not bother even with the attempt.  i am so glad for her and that she stuck around and gave me so much.  now i just can't imagine how i could have made it through it all without her and i am sure your husband is feeling the same. keep on keeping on and here is to hoping someone in your circle of friends and family will step up and offer help and encouragement.  

have you throught about or tried local support groups?  we didn't really - i think i was on a poor me pity trip. as i think on it now it might have been good for my wife to have someone to talk to and help her deal with her frustrations (me mostly).  well, something to think about.

and as for whining, i think sometimes it is good to whine.  i like a nice merlot myself.

 

peace

rick

 

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

You aren't whining! I was the one with cancer, not the caregiver. it's hard on everyone. i always wondered how in the world my poor family lived through all of it.  It turns everyones life upside down. I would cry and apologize. Everyone kept telling me, "That's just what we do for the people we love honey." Well, I think caregivers deserve a medal, a vacation, a hug, a break, and all the venting and letting it out they need to do. Especially if you feel alone. Cancer can definately alienate us from others. People seem to think it's a six month ordeal or something. If I lived by you, I'd come give you a break. Cook you dinner and tell you to go out and get some sunshine. It sucks to feel alone; I do know how that feels. You should vent anytime you need to; people here understand and care for you guys.

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

Thank you!

carrieh's picture
carrieh
Posts: 146
Joined: May 2012

Just checking on you guys..hope everything is going a bit better..any improvement with eating? How are you holding up?

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

Things are a bit better. he had a gallon or so of fluid removed from his pleural area, which has helped his breathing.  He seems to be able to eat a bit better, but then he has also started the clinical trial meds and they make him naseous and throw up, so now he is dehydrated.  He is currently in Philadelphia receiving fluids.  I am hanging in there, doing what i need to do.

Thank you so much for thinking about us.

Sandi

 

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

Rick, i like a nice red sweet whine - so maybe i will have some tonight when i get home from work!!!   Thank you!

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