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Getting Scared Again

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

It just seems like, I get comfortable with the way things are going and then POW! something else happens. My husband was doing really well, we went away and had a great time. Then he started Chemo - he did well tolerating it, no side effects while he was having it and even now I don't think he's having any. He did have his port inserted before he left the hospital - they did not put him to sleep, they also did not tell him that he were not going to put him to sleep - so he was awake through all of it. Now, being 4 days out from surgery - he is in an extreme amount of pain - he cannot move his shoulder at all. Every time he gets like this, any kind of pain at all - I start worrying, Again. I don't know, I am trying to be positive and it is getting very difficult. I see my once very strong husband, huddled in the chair like a scared little boy - it rips my heart out. I have dreams at night about his funeral, and then having to make the awful descision telling them that he wants to be cremated. Even worse, he has told me that if he ends up in the hospital, he wants no lifesaving measures taken, he told his brother if it comes to it - he will need to "pull the plug" because I won't beable to do it. I am terrified, scared and I want to run away. There I said it - but I don't feel any better. Only the Oncology Support Group lady that came to the hospital to see my husband seems to be the only one that tells us what we want to hear. I don't know if that is good or bad. She said, your condition is manageable, not curable, just manageable. OK great, but does that mean I get my husband back or I'm going to have the scared little boy for the rest of his life. I always told my husband, that I'm going to have to die before you because I won't beable to handle you getting sick and having to make the hard descisions about your health. And what happens, he's the one who gets sick and I have to make all the hard descisions. Am I being punished for saying that? I don't know what to do.

Oh well, I guess I will get through this the same way I get through everything - put my head down and plow through.

Thanks for listening to me vent.

Sandi

krystiesq's picture
krystiesq
Posts: 242
Joined: Jun 2008

i remember those first few weeks post surgery while my mom was recuperating. She had a major surgery and then her port installed and then started chemo. It was a very trying time. especially for me, the caretaker. I hope you can relate to this. It is sometimes harder to watch someone go through cancer, a loved one that is, because you feel helpless. I have days where I can't even come to this board because I try very hard not to think about cancer. Then there are days where I want to reach out because I'm having a good day. You are going to get used to a new mercurial life. I have dark days, they are normal to have. You probably had them before cancer, but only now it is more real. Cancer (should be a four letter word) really has a way of grabbing your attention and wrapping your brain around mortality. If it isn't today that you can say: I'm going to live each day to the fullest and be positive. Then let today be: That hour was consumed by darkness, but this next hour I'm going to live to the fullest. Cancer creates more variables in your life than were expected, but you can't say that you can't live life like this. You don't know how many ways you can live, especially when something not planned enters the scheme of your life. you've got no choice but to adapt and do the best you can. Take it easy on yourself and focus really hard on what you can do to better this hour, this day, if not for you for your husband. Remember how you felt before your vacation, you probably anticipated and consumed time by planning...plan something else. Put a milestone ahead of you in the foreseeable future. My mom was told too that stage 4 isn't curable just manageable...says who? I know plenty of 4s on here that are NED.

Side bar: Make sure your husband knows there are no awards for toughing through the day in pain. My mom's port hurt really badly, and to compound that she fell two days after surgery and hit the ground precisely where her port was installed. Less pain = more focus on healing and letting chemo do it's job.

Be well.

peace be with you.

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Cancer is not easy for either the caregiver or the patient... I often think the caregiver has a harder time.

My prayers are with you through this difficult journey.

My suggestion to you is to sit down with your husband and make a plan of how he wants things handled at each phase, should you need it. Actually, we should all do this... but it is hard to do. I believe it is called a living will... but I'm a little fuzzy on the word. Any hospital and probably even the doctor's office will have a packet that will help you fill out. That way, you won't be stuck with making any decisions for him. He will be able to make every decision for himself in any event. It gives him what he wants and takes the pressure off of you.

He doesn't need to be a hero and tough out the pain. Your body heals slower when it is in pain, so if he can, he is much better off taking the pain meds and getting through.

My prayers are with you and your family.

Tricia

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

Thank you Krystie, Yes, I am realizing that there are going to be dark days and good days. When we are having good days, then I feel guilty because we should be concentrating on getting him better. I have been like this ever since we got the results back of the PET scan, I find the doctors only tell you that the test confirms what they were thinking it was. When I actually got a copy of the test, I was shocked to read that my husband has 40 to 50 spots on both of his lungs, the biggest being 8mm and that one being the only one showing any activity, the other ones are too small to know if they are active. It also confirmed that the abnormalities on his liver are cancer too. There was also something on there about a mass found somewhere else - she did not mention this to us - so I am assuming that it is one of the spots on his lungs. (I will have to look at the report again). My husband asked me what the report said, I told him that it confirms what she said. I don't want to scare him, he has not wanted to read anything, look at anything or research anything. When he has a question, he asked me to go online and see if I can find an answer for him. When we are at the doctors, he relies on me to ask the questions. He is putting so much faith in me to find the answers - I just hope that he doesn't think that I am giving him false hope. I so badly want him to get better. We have children that still need him, he has family that still needs him, his 93 year old grandmother still needs him - she thinks the world of him. He is the apple of her eye. She doesn't know that he has cancer, and we are not telling her, we are afraid that it might kill her if she knows. She almost died when my husbands father passed away 2 years ago.

Funny how life goes, just last year my husband and I were talking about how you never know when it's your time. How last Christmas might be your last Christmas and you just never know, cause things change so much in a year. So every holiday and every day we live, we celebrate - every night I say to him - well, we have made it through another day, lets hope tomorrow is better than today. I Love You and we will continue to Fight the Good Fight tomorrow and every day thereafter. That seems to help him, to know that I am fighting just as hard as he is. I will not let him give up, I told him that I would be extremely mad at him if he just gave up. He tells me everyday, i'm not giving up - do you think I would be dealing with this pain if I was giving up.

I love him with all my heart - and I will fight for him forever.

Thank you again for letting me vent, yet once again.

Sandi

standbyme's picture
standbyme
Posts: 41
Joined: Sep 2008

Sandi,

my husband is also stage 4 with many mets to the lungs. He depends on me for all info, decisions, questions to doctors....you name it. I think when they have to hand over so much control because of the disease that they find it easier to just try to zone out to a certain extent. I have also tried to protect him from the many scary things that could happen and we have told the oncologist that we don't want to hear a prognosis. We will do the best we can. Good luck to you and your husband.

Judy

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

I know personally that despite the fact that I'm not fond of having cancer, I think, no, I know, that I can handle the situation better being the sick one and not watching one of my family or friends going through what I'm going through. Sometimes, though, when I get into one of my self-pitying moods, I need someone, usually my husband, to snap me out of it and get on with the process of 'living' and getting better.

As for the pain in your husband's shoulder. I have a friend who had the same thing happen to him with the port-o-cath. Eventually they had to replace it with a pickline, and he is much happier and pain-free. My prayers are with you and your husband. Monica

rrob
Posts: 160
Joined: Nov 2007

Sandi, I am so sorry that you and your husband are having to face this battle. But you can do this, especially with each other for support. I am also Stage iv and I remember being in shock and not wanting to face things, but needing someone to act as a buffer at first. This was a stage that passed after the initial shock wore off--not quickly, but eventually. I hope your husband will rebound, too, after the shock eases somewhat.

Next, when I was given a grim prognosis, the equivalent of the "not curable, but manageable" talk, I was very upset. There is an organization called Cancer Hope Network (.org on web) that really helped. You call in, give them your diagnosis, including stage, and they match you up with a survivor who is at least 1 year out of treatment. That person calls you and shares his or her experience to offer hope. In my case, a man who had been diagnosed with cc with mets to his liver called. He had been out of treatment and NED for 14 years!!!! The very next week, one of my friends had a client tell her about his dad--stage iv cc, NED 10 years! I don't know about you, but that sounds pretty darn close to curable to me. So live and fight for today, tomorrow, and more tomorrows! Your husband may be like these guys; there is always hope! Regardless, grab today and squeeze every precious moment out of it. Some days it's harder to squeeze than others, I know. Lots of positive thoughts and hope for you and your husband,

Rebecca

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

....and it blindsides the caregivers!

I have been both a survivor and a caregiver...my mom and sister have both had cancer, and I am the 'expert' of sorts, with 2 cancers. I will take the survivor job anyday. Caregivers get to hear ALL the news...the doctors must pass all the information along somehow...so they corner you guys!

As far as funeral arrangements, etc...well, that's not a bad idea regardless of our circumstances. I have a full will, DNR instructions, and an advance directive (right down to the part about I want a BIG party thrown....and NO TEARS...celebrate my life, don't mourn my passing).

When we are told the narly side (I was told 6 months to live, get your affairs in order), after hyperventilating for awhile, we settle and get things done. We think more about what would happen to those we leave behind. It's a common occurance. We are not thinking about how this is freaking our loved ones out...

Stage 4 DOES mean that he can be visited by the beast again, but it also means periods of remission. My one patient partner, who is stage 4, inoperable, went on total disability, is puttering around the house, traveling, and is (according to his wife) in better shape than he has ever been in. He goes to the gym daily. He will possibly have gamma knife surgery when they return from Hawaii, just to reduce the largest tumors in his liver. He has fished in the wilds of Alaska.

Hugs to you, Sandi....you both are in my prayers..

Kathi

cancer0205
Posts: 9
Joined: Feb 2008

PRAY.....PRAY....PRAY....MIRACLES DO HAPPEN! I WAS DIAGNOSED STAGE IV COLON CANCER LAST FEBRUARY WITH METS TO THE LIVER (8 TUMORS) I HAVE HAD 12 CYCLES OF CHEMO ALONG WITH AVASTIN AND I AM NOW NED. I DO HAVE NEUROPATHY IN MY FINGERS AND TOES. MY ONCOLOGIST SAID THIS SHOULD MOST LIKELY GO AWAY BUT WILL TAKE SOME TIME! I START MAINTENANCE THIS WEEK AND WILL BE GETTING AVASTIN (WITH PORT) STAY POSITIVE AND PRAY!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

I'm curious about what you're taking for what you called maintenance. You mentioned Avastin- is it just Avastin you're taking or is there anything else also? How often?
Always curious about what others get and what options are.
Lisa

HDLadyRider
Posts: 10
Joined: Nov 2007

Sandi,

Been there! I'm so sorry that you are there now too. God-willing, it will get better. You sound as frantic as I've found myself to be throughout the last year. My husband had liver/colon resection in March and an ileostomy reversal in May. After the reversal surgery, he had really bad pain in his left arm. He complained to docs and nurses which finally resulted in some scans and xrays. Nothing was ever found and to this day, he occasionally complains that he cannot raise that arm all the way.

I sure could feel the stress and worry in your written words. I so hate what cancer does to us as well as our loved ones. My hubby is stage IV and had thought he'd be having RFA done on a new tumor that started growing in the liver only to find out that the chemo has worked and the PET shows NED...Your hubby can get there too. Mine will now just be doing the Avastin maintenance just like another poster mentioned.

You will get through this. I don't post often but will watch for yours to keep tabs. If you need a buddy, please don't hesitate to let me know. Strength...many meanings.

Hugs...J

changing2
Posts: 118
Joined: Jul 2008

HI, So sorry you have to be here:( Surely we all can idenify with what you're going through...it's so difficult... but you'll find the ups and downs of the journey are just that...some days are super good and others are super bad. Just hang in there and continue to use your support people like us:) I certainly hope you have a faith which understands that God is very aware of just how fragile we really are especially during this time in our lives. I believe in a God who truley cares and will not send calmaity on us just because we voiced a heart felt concern. My God saw His own son suffer, so I know He understands my pain and concerns. That's why I run to him when the journey is difficult and lonely. He also gives us others to lean on and that's why we're all here...and today it's for you!!! I'm praying for you and will watch for your posts. Take care, praying for peace of mind and heart!

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

I re-read what I posted earlier and thought maybe what I wrote could be taken negatively and that was not my intention at all... I didn't mean that you should rush out and plan for his funeral. I was home from lunch and read your post and just quickly responded to one of your fears of having to make all of the decisions regarding him. My response was only meant to encourage his decision making regarding his treatment now and down the road. I think Kathi hit it, is it the advance directive? I remember even being told that it is a good idea to make one when I had my baby. It is only a statement of, "IF this happens, then I want this done" regarding any possible scenario's. It was just an idea to take a little bit of the pressure off of you and give your husband a little more power. I'm having trouble putting into words what I'm thinking... I hope I don't jumble this up too badly.

You have a lot on your plate! It is totally understandable that you are scared and stressed. Top it off with the fact that you are trying to be brave enough for the both of you.... well, you are doing a great job! I'm so very glad that you found this site to vent and share some of your fears. Your husband is a lucky guy to have you looking out for him. Just remember to look out for you too!

Don't feel guilty when you are feeling good or having a good day. Those are the days you need to live for! Plan something to look forward to. Take each day and laugh. That will be good for his spirit as well.

There is always hope! There are so many Stage IV survivors on this board. There is no reason your husband can't be one of them! I pray he is.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm praying for you and your husband, Sandi. I know this is a very difficult time, but you have seen that there are plenty of long-term survivors on here. Enjoy every minute with your husband and look forward to lots of years together.

*hugs*
Gail

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

I just wanted to take this opportunity to Thank each and every one of you for your posts to my ranting and raving. I know I can always come here and have my fears calmed. And so far, everything that you have said to me this time and in the past has happened exactly as you said it would. I am a very impatient person, so it is difficult for me to sit by and just watch, I want immediate results - but I know I can't have them, so not only am I learning to deal with my husband's illness, I am also learning not to be so impatient about things. Things happen in there own time, and if I don't push they turn out good.

So, I want to Thank everyone for their thoughts and prayers. I'm sure you will all be hearing from me again.

Sandi

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I am not sure if this is the same per say but as soon as I was diagnosed I had a Living will drawn up and that took care of anyone having prolonged suffering in the case I was to ever become incapable of fending for myself. It gave me control of my life and destiny and released anyone from having to suffer for a long term or making a decision that I could never make. My wife and I both have one and both came to the same agreement about it. You have to be willing to discuss it and I being diagnosed it was easier for me to bring it up for discussion. You are asked at every place you go if you have an advanced directive or living will so we decided to get one. Its nothing but another issue in life that you have control of and in this area of disease the more control you have the better it makes you feel, or at least thats the way it works for me.
I as far as immediate results never had any. The only ones that I took on as immediate were shoved back down my throat as a kick him while hes down sort of thing so I took the ball in my own court and played offense instead of defense. I decided that it didn't matter what they threw at me I was gonna take over and overpower whatever it was. I didn't care if it was everywhere, I got mad and decided that I wasn't going down without a fight. I had the Lord behind me to take control and I gave it to him and told him I was gonna be a little ornery although I let him take the wheel I was gonna be a co-pilot. When I go to chemo now (Post Op) she says this is gonna hurt a little and I tell her no its not just shove it in there and lets get it done. It doesn't bother me to be bossy because I tell them that is how I am going at this treatment and it works for me and they all think I can't feel pain. I just decided that Im not gonna let it get me , ever. So, when Satan knocks at the door just simply say, Jesus, will you get that for me ? Then you have won the battle and taken over. Then sit back and follow your path with your husband and make it as comfortable for you both as it can be. Don't look for a certain outcome on anything, I tried and just get kicked in the tail for it. Take it all as it comes and all in stride and deal with each issue 1 at a time and it makes the journey easier and it will be over before you know it.....Good Luck and God Bless both of you......and He will.........

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