CSN Login
Members Online: 3

You are here

Caregiver distressed

tabur's picture
tabur
Posts: 71
Joined: Jul 2009

Hi folks,

New to this board and CRC. This past December, my wife was diagnosed with CRC with mets to the Liver. She is age 50 and had no symptoms until pain on the right side.

A medi-port was installed and she was given Folfox 6 with Avastin. Her response seemed very good, numbers were good and the tumors appeared to be shrinking. After 6 cycles she developed a blood clot and the port had to be removed, but by then she was to be on the Avastin only.

Prior to the next Avastin treatment, it was discovered that her protein count in her urine was high (5000+ as I recall) so the Avastin was stopped. She is now seeing a Kidney Specialist. The Onc ordered more scans and unfortunately, the tumors are growing. One of the tumors is interferring with urination so we are meeting with a Urologist who will probably put a stent in.

The Onc also tested for the K-ras mutation which she has. So now he wants to start her on Irinotecan and an oral 5-FU (he's afraid to have the port re-inserted due to blood clots).

We have been married for 31 years (she was and still is my highschool sweetheart) and up until last December, neither of us had had any major, and very few minor medical problems. Now, these past 9 months have been a whirlwind of doctors, procedures, tests, scans, drugs, bad news, good news, bad news, etc.

We are both scared but I try my best to be strong in her presence. I know there is a caretaker forum but I prefer it here in the CRC forum.

I'm not sure what I'm looking for by posting her (my) story. Information that you have to share, or more importantly, support and prayers for her. Her name is Pam and she is my life.

Thanks for listening...

Al

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Welcome, I too recently joined this board. My sister, 39, with no symptoms was also recently dx in 03/09, stage IV with mets to liver and ovaries. She had an emergency surgery where they removed the tumor that perforated the colon and removed her ovaries. She is now waiting to see if she can have her liver and tumors on her ab resected. What I have learned from this board and research is:

Do not give up HOPE. There are so many new drugs, treatments, medical advances to treat this that it can and has been cured. Read some of the posts here where people talk about being NED (no evidence of disease) for years.

Seek out other opinions: find a doctor that is willing to treat this as aggressively as can be and wants to be treated. Try to be treated at a NCI facility.

I will keep you and your wife in my prayers. It helps to share on this board. I have found comfort and inspiration here, from the kindness of everyone.

Marie

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I'm sorry to hear about your wife Pam. It sounds like you two are a great couple. I am not a caregiver, I am the one who has cancer. I do understand how hard it must be for you at times. One thing that I've done with my wife that I've felt bad about is not leaning on her enough. I didn't want to burden her and I've always been the type that sucks it up and plows through. She is not the type who handles illness well, especially if it's her who is not feeling well. We talked about this the other night and I didn't realize how I made her feel left out. I do not know how your wife is with this, if she's the "loner" type or she needs all the support she can get. All I can suggest is to keep doing what you are doing and if you need to vent or seek opinions, you can always come here. You could also try talking to a therapist or if you have someone in a church that you feel could help, seek that out too.
Just so you know, there are many Stage IV people who are NED (no evidence of disease) or who are like me and are living with cancer.

Best wishes and I hope you can find some comfort here.
-phil

stallworth2124
Posts: 5
Joined: Aug 2009

Today is my first day here trying to find some kind of comfort here for myself. Mr. Phil I too have Cancer (breast) after my sister was diagnosed in June 2007/ deceased January 2008. My mother diagnosed January 21st, 2008 three days before my sister passed and I myself was diagnosed June 2008. I assisted in caring for my sister and was the care giver for my mother. I haven't had a break since everything started. I'm overwhelmed most of the time and have had thoughts of giving up until someone recommended this sight. I want to live and get through all of this but my tired mind and body keeps trying to convince me of something different. The stories on this site have somewhat calmed me with HOPE. Thank you Mr. Phil.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hello Al

I'm very sorry that your wife and you are having to deal with all of this - it is quite overwhelming for anyone involved.

I have to be strong with my wife as you are doing - she does not take bad news very well at all. She does a good job of the physical aspect of the disease, but does not deal well with the emotional aspect of it - if I were to show weakness in front of her, then she breaks down and loses faith and it sets a bad chain in motion.

I have never had any emotion in front of her - I might talk to her before our surgery, but it is nothing deep, she cannot deal with it. In a way it's unforatunate, that I cannot share any fears or concerns, sometimes you would like to, but I don't want to upset her, so I go at it alone. Just make out like things are business as usual, just another day. This seems to comfort her that things are alright.

The board will be a good place for you to vent or share any emotions or questions that you might have - there is a plethera of experience here, and somebody will always be along to pick you up when that is needed - or anything else that you need.

Phil echoed it nicely when he mentioned the many Stage IV NED folks on the board - and like Phil, there are many of us who have been living with Cancer for many years.

I'm a Stage IV myself and I've been actively battling the disease into my 6th year now - and Phil is right along there with me for that kind of time...we are examples of what he was talking about - that we can live many years with the disease. Neither of us have given up and from what I know of the man, neither of us ever will, no matter what.

Will be sending prayers your way for strength to fight the battle, and the calm and peace necessary to live your life without worrying every minute - which you will want to do - but don't - it is all consuming and you will get burned up very quickly.

Try to make things as normal and routine as you can and take a moment here and there for you to enjoy each other.

Any of our stories are available under our Profile - just click on our names and you will read many stories on what each of us has had to endure. You will not be alone in this forum.

-Craig

nudgie's picture
nudgie
Posts: 1482
Joined: Sep 2006

if I can add anything to the great informative and supported posts above me. My husband was my caregiver and he was a ROCK!!! I was the biggest, whinest baby of all. I even told my ENTIRE care team to get ready, cause I am a baby :) I questioned everything and responded too quickly most of the time with simple side effects, but anyways, what my husband and I did was spend time together. Talk about anything and everything. Except support from others (church, family, friends, job, etc).

Let your wife know you are there for her no matter what the issue; great or small and that will be all she needs to hear.

ON ANOTHER NOTE: My husband and I decided once treatment was completed and I was NED, that we would start taking 1 or 2 small getaways a year for just use. Our alone / together time and it is great. We have been doing this since 2007.

Annabelle41415's picture
Annabelle41415
Posts: 6691
Joined: Feb 2009

Welcome to the board, but sorry you had to find us this way. You have come to a great place for encouragement, support and advice. I'm sorry to hear of your wife. You, as the caregiver, are a very important part in her mental stability and recovery. My husband has been there for everything that I have endured this past year and I thank God that he is so supportive in every way. Just being there for your wife is going to be immensely helpful to her. When she has a bad day just put your arm around her, you don't always need to say something, just her knowing you are there is sometimes all it takes.

This is a scary process and you are both going to be scared. You have a lot to deal with and sometimes it feels overwhelming. Don't ever deny yourself of feelings though. If you need to go talk to a friend it's best to do so.

Remember, you always have a new family here. Someone always to help you and your wife through this. We talk about everything any anything so don't ever think a subject has not been brought up here because it has so just ask away or just discuss whatever.

Kim

stallworth2124
Posts: 5
Joined: Aug 2009

To be totally honest, you don't really know what to say even though you want to. I entered this site after my Av-Med Healthy Living counselor suggested that I needed to talk to someone professional. My sister, my mom and myself were diagnosed with Breast Cancer within a year's time. I just got through reading your story Mr. Al and I'm thanking God right now for allowing you to be so devoted to Mrs. Pam as she takes the neccessary detour in her life to get better. I know she's going to be just great. I see you've had a very long life together. You were close before, but going through an illness like this brings you even closer. I'll continue to read the stories here and I'm going to read yours again because it gives me some hope where before I didn't want to believe there was any for me because I'm always feeling OVERWHELMED. (You are not alone).

donnare
Posts: 266
Joined: Jun 2009

Hi Al,

I'm a caregiver too - my husband is 52, diagnosed in May 09 in kind of the same way as your wife - no symptoms except pain on left side, a routine CT, and then the bottom fell out of our world - Stage IV CRC with inoperable mets to liver. He had a colon resection, port put in, and has had 2 chemotherapy treatments - 5FU, lucovorin, oxaliplatin and avastin.

I feel the same way you do - neither of us has had any medical problems. We are very scared, trying to stay positive for each other and our daughters, but it gets to me sometimes and today seems to be one of those days.

I just wanted to say hello and welcome. I will keep you and Pam, and your family as well, in my prayers. Sorry you have to be here Al, but I have found this to be a wonderful site - full of compassionate, generous people - survivors, warriors & caregivers - who are always willing to share information, prayers and offer a shoulder.

Be well,
Donna

tabur's picture
tabur
Posts: 71
Joined: Jul 2009

...to express my gratitude for all your responses. I just returned home from a very long day at work, Pam sat with me as I ate my warmed-up dinner, and we talked about the challenges ahead but with a more determined tone. Last night was sadness, tonight determination. I know I don't have to tell any of you about the emotional roller-coaster we all ride.

Your responses have lifted my spirits and I thank you deeply for this. Since her diagnosis 9 months ago Pam has leaned on me, and last night I buckled. Thank you for allowing me to lean on you.

This is the hardest part of my day. She likes to go to bed by 9:00pm and I'm usually awake with nothing but my own thoughts till 11:00 or so. It's nice to know I'm not alone.

Bless you all,

Al

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

I only had 1 talk about death with my wife......I was dx with crc in 3/25/08 and didn't know what I was in for ....yes it was a rollercoaster for a while with all the appt and all but the one talk I had with my wife we both talked long enough to know that someday both of us would pass on and that one of us would have to endure the other ones passing. I am 19 years older than my wife so I think I know who will go first. We discussed very in depth about how we felt about things and each other, something we hadn't done much of before. We also came to the conclusion that everyday was a gift for each of us, and that even though I had cancer that life would go on as normal as possible and that everyday was to be another day of laughing and sharing and nothing but smiles....Yes , we both had our cry together...long and hard, but when it was over we both knew that we had just entered a new phase of our lives together. The part of growing old together and enjoying everything in every part of the day...It brought my family closer together and I wish that I could have found this new feeling of zest for life that I found after diagnosis....It will be bettr for you both sooner or later...It does calm down after a while, and it will bring a new meaning to enjoyment of life......Blessings to you and your wife.........

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

thanks Buzzard
for your words- one thing I love about this board, comments made for others can and do affect all of us!

I think what rang so true for me in what you said is "it does calm down after awhile"-

So yes, Al it does calm down as you find the new normal.

For me, my mother was my caregiver and even though there were things she did not want to discuss, there were things I HAD to discuss. 2 examples- after my dx and before surgery at Mayo- I was freaking out inside about what if I were to die in surgery, that I did not want my young adult children to hear this over the phone. (Mayo is 2 hours south of where I live). I was finally able to tell my sister this, sobbing hysterically, she assured me that she would not allow that to happen, that she would take care of it. That conversation felt like a huge emotional burden had been lifted, I literally was fine after that and ready to move forward into the unknown. The other was losing my hair. My mother refused to talk about it, she said I may not and it was stupid to talk about it until it happened. I finally confided in a coworker who had been through cancer treatment on what to expect and she was very helpful. And then I was fine, I could put aside my fears and move on to something else.

So yes, Al, talk, talk, talk. Bring in another to help? Like a co-caregiver? I guess that is what we are here on this board, co-caregivers!

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Al,
Your wife is very fortunate to have such a loving husband. Your love and support are a big part in her well being. I also am a caregiver. My husband was diagnosed with stage 3c after a routine colonoscopy in January 2009. This has been an up and down and up 7 months. I think the hardest part is dealing in the unknown. However, we have found a lot of peace appreciating each day. I will pray for you and your wife Pam.
Aloha,
Kathleen

seanslove's picture
seanslove
Posts: 71
Joined: Jul 2009

Al,

I too am the caregiver to my 45 years young husband who on May 25th this year was diagnosised with stage four cancer. We spent most of June with the doctors trying to track down the source of primary,never having acomplished this,he is being treated for where the uptakes in the scanc are proving to be an issue:i.e.colon,stomach,and lung. His left lung is completly and perenmatly collapsed. He fought what he believed to be a bad flue bug all of April and on May 18 gave into going to the ER. That day his lung was found to be encompassed with fluid on the outside which required a tube to be insereted to drain the fluid. When we went to the er he weighted 173,which was down a few from the first of April when he became ill,now,as of Monday at chemo in short stay,he weightes 131. I am guessing as sick as he has been yesterday he is down to 129 this morning. We DC his chemo at 1 today,we have a home care unit nurse who comes to the house and DC's the line when the 46 hour drip is finished.
He has a CT Scan in the morning which,even though his last is to old to use as a marker,will at least tell us something about how the cancer is responding to the treatment,doc's hope to see same results since the scans are to old,or better yet,less showing.
Being a caregiver is got to be the hardest job on the planet,as your emotions must be put on a shelf in lue of being the rock your spouse requires to trudge forward and keep up the hope and faith all of this will work. I continue to tell my husband how things will get better,as emotionally he can no longer handle anything else. He has asked for me to deal with whatever must be dealt with and basically keep him out of the loop unless it's good news.
I will keep you in my prayers as well. I wish I could tell you something to make everything seem better,however,what I can tell you is that for myhusband and I who always had a strong marriage,now our bonds seem stronger than ever. We find comfort in being together each day,and I know in my heart,even though this seems to not be working,at least we are fighting together,and through this,I hope God sees fit to make him better,as I feel it is in God's hands more than anyones.

donnare
Posts: 266
Joined: Jun 2009

Just wanted to say hi and tell you I'm so sorry your husband has been so sick. I will keep you both in my prayers. Hang in there.

Hugs,
Donna

dash4
Posts: 304
Joined: Dec 2005

Hi Seanslove,

I too am a caregiver for my husband (60) and he believes the same as your husband. We are each others comfort too, but I am the emotional and everything support and he wants me to deal with "life" and only share good and positive thoughts. It has been 5 years and at times I must admit it is difficult. I do wish just once he would talk about the "what ifs" and then we could let it go. But, his strength comes from not going there with his thoughts and I must respect that. He has done remarkable...diagnosed 10/04...he has never been NED, but we have never given up and we have slowed down the progression of his cancer till recently and now he is having many problems. So, now I feel a strong need to talk, but he is still not ready and I guess may never be and I need to accept that and let it go, but then I wonder at times if I should talk to him. Sorry, I am babbling - just wanted you to know I share what you are going through as the caregiver.

Dash

Subscribe to Comments for "Caregiver distressed"