2nd year caregiver jitters-CAREGIVERS ONLY

[CLD]

Jan 10 will officially mark the 1 year anniversary of my DH cancer journey and as the beginning of the second year approaches, I find myself faced with a whole new set of worries and expectations. To be blunt, I'm waiting for the doc to say the cancer has come back, there is nothing we can do, he has 6 months, go home and die. I think this fear comes from the fact that 80% of cancers recur within 2 years. I fear that I no longer look at him exclusively as the man I love but rather as a "dead man walking." When I look in his eyes I look for signs of jaundice, when he's tired I think lymph nodes are stricken, if he has a headache I'm afraid it's a brain tumor. I'm driving myself crazy. Sometimes I feel I have to emotionally separate myself from him so I don't end up in a mental health ward when he dies and leaves me with 6 kids, no modern job skills, and no money. Sometimes its hard to switch from being caregiver / secretary to intimate spouse. (With 6 little kids, this isn't a frequent problem). I'm back to googling survival statistics. With chemo being done, friends and family think he is cured, all done, problem solved. His scans and blood work have been clear and 1 year colonoscopy is in 2 weeks. I guess I just can't imagine living with this level of stress forever.

[exaussie]

Sweetie PLEASE STOP THE GOOGLE
You sound like you need some time to distress. Any chance of date night with DH? a friend or family member available to watch your children for a few hours?
I am still raising 5 kids-two are teens now so I know it can be difficult without the added stress of disease.
Get yourself in to your DR and get some help. Anxiety is a huge problem with care givers. If mama aint happy nobody is really is true.
Every so often, morning or night, remember your spouse when cancer wasn't an issue, remember why you are together, what brought you two together.
Really count your blessings, I know it sounds simplistic but I try to write down my blessings every so often.
Cancer is a thief, it steals joy, peace, relationships, good nights sleep, among other things. Don't let it steal the life you and your DH have built.
Care takers need to take care of themselves too, your husband has drs and oncologists, but sometimes patients and care givers need some counseling help too.
I am sure he is scared sometimes about the future.

And most of all you guys got through year one YAY!!!!!!

[Laurettas]

CLD, what you are doing is quite normal, IMHO. My husband had stage 4 cancer twice, once in his 20's and then the colon cancer that killed him when he was 59. I still remember the high anxiety we both had the first 2 or 3 years after he finished treatment with his first cancer, Hodgkin's disease. At the time he had it in the late 70's, it was not considered curable like it is now. They were telling us that 2 years was a positive prognosis! Anyhow, I thought my husband was going to wear the skin off his neck and armpits because he was constantly feeling for swollen lymph nodes. Every checkup was enough to make both of us ill. We did that for two or three years but then, one day, we realized that for a time we had forgotten all about cancer. Living our lives once again became normal and cancer faded into the background. It takes time to recover, a cancer diagnosis is extremely frightening. Just be patient with yourself. The trauma will subside.

[Deb m]

I know how you feel. Every time my husband has a check coming I really get sick, loose weight, can't eat, can't sleep, cant' focus on anything. I have even had dreams about his funeral! He is five years out and has been NED since surgery in February 2011. Like you, every time he gets even a simple cold, headache or is tired and goes to bed early I just freak out! He thinks I'm crazy. I just can't help it. I don't know if it will always be this way or if the fear will go away some day, but fives years and it's still hear as strong as ever.

This probably doesn't help you any other than to know that your not alone in your fears as a care giver. Hang in there!

deb m

[pantufla]

We aren't as far along as you guys are. My husband will be getting his fourth FOLFOX on Monday. We were told 70% chance of complete cure for stage 3. That just gives me a lot of hope. Just my experience so far.

hugs to you.

[kandj]

I feel like I am you in reverse. DH was diagnosed, we have 3 kids (11, 7, and 5) and when he was diagnosed I felt like we both were hurtled in a car at a brick wall going 70MPH. We went to the ER after he fainted in the Drs. Everyone thought it was his gallbladder. Turned out it was Stage 4 CRC with liver mets. Many many liver Mets. I remember crying on the phone to my best friend saying how I was going to be a young widow with three boys to raise all alone. I googled, I looked at stats (the best saying 11% 5 yr OS) and I just felt so lost. But, then I decided we were going to fight with everything we had. We got another blow a month later when the surgeon we saw told us that chemo had about a 5% chance of getting DH to the point of resection (the only way to cure him). Again, I felt like I had been punched in the gut. By then though, I was better prepared. I was ready to call Sloan before we even left the building. We are still in the fight stage, but I am praying and hoping we get to the NED and check up stage. And I will probably be a nervous wreck before any appointments. I remember being like that with my pregnancy with my middle son. We were told very early on we were going to lose him. I had massive hemorrhages the first trimester of my pregnancy. I would lose a 1/2 to one pint of blood each time, happened 3 times in 6 weeks. Then I bled for the next 12 weeks. Every time I went in to an appointment I braced myself to be told there was no heartbeat. But they never did. Then he came 7 weeks early and was very ill with bacterial meningitis. Again, we were told to expect the worse, but instead he thrived. And now he is laying on the floor with his younger brother watching silly youtube videos. My worry never got me anywhere other then to increase my anxiety. He is here against all odds and he is amazing. Just remember that your DH is here now, he is here today, he is alive and is the man you fell in love with and made 6 beautiful children with. Try to live in that and let go of the rest.

I don't know if you are a religious person, so please disregard this if not. When DH was in the hospital after his surgery last month, I had finally gone home from the hospital (it was probably day 4 post op). I was exhausted, laying in bed (on my side of it) and a million thoughts were racing through my head. I could feel the anxiety creeping up. I had often heard people say that you have to give it over to God. I never really understood that, nor am I the type of person who is known for giving anything over easily, but I just closed my eyes and prayed. I prayed that God could relieve me of my stress, of my anxiety, of all the what ifs. I prayed that he could give me the ability to hand it over to him, all that worry. I took a very deep breath, and I felt like when I breathed out all of that anxiety went with it. I handed it over and I am just trying not to worry. I am trying to have faith that God can carry this burden for me so that I can focus on my DH and our family. Some days are better than others, but I just have to let go.

[pantufla]

Thanks for that Kandj. I too have to turn him over to God many times a day. If I take it back, I get WAY too freaked out. I'm not sure about His plan, but I do trust Him.

[mdev]

Hi CLD,

Although you wrote that, there are days when I feel like I would have written exactly the same thing. It just looms, there's no denying it. I used to live in the future and I was a planner. The only way I can cope right now (50% through FOLFOX, husband is 3b) is to NOT look more than 1-2 months ahead, tops. It is really, really hard but it's the only way I can appreciate our present circumstances. He's here right now, and we get to enjoy our family (4 kids under 8 years old) and I refuse to let future uncertainty ruin what we have. We won't know for a while if the surgery and chemo have cured him, but I'm certain that we've all bought ourselves time. I try not to think about it but every moment that we can create for him and our children is a win. No doubt about it.

[CrossfitChick1980]

This is our second round with cancer after being NED for about 5 months. When he was first diagnosed, I made the mistake of going on the Internet to look at survival rates. Boy was that a mistake!!! I learned quickly that if I wanted to be the strong person I needed to be for my husband and our four children, I needed to stay focused on taking care of my family rather than worrying about what was to come. I admit, this second go round has been harder than the first. However, with prayer and exercise, I feel like I can make it through anything as long as he is by my side

[annalexandria]

I don't know if this will help, but 80% of all cancers don't recur in two years...80% of the recurrences that do occur are within the first two years (so in other words, if a recurrence happens, it's likely to be within two years).

Recurrence rates vary depending on stage, and are much lower than 80% for lower stages. You can use one of the several online calculators available to get a better sense of this (one example here: http://www3.mdanderson.org/app/medcalc/index.cfm?pagename=coloncancer).

[Sams wife]

I've got some kind of jitters too. The main thing I have gotten off of here is that if its gonna happen, worrying wont stop it.

I'm sure you are in the situation we are in. Not much fun to be had at the moment. I couldn't imagine with kiddos. To tired, to broke, to worried. I did go walk around a mall one day while he was sleeping off chemo. Almost felt like a normal day.

" When I look in his eyes I look for signs of jaundice, when he's tired I think lymph nodes are stricken, if he has a headache I'm afraid it's a brain tumor."
I still look for stuff like this & I don't think it will stop anytime soon. But, you know there are people on here ned for a long time? Will you worry like this for 10 years or just decide to think about something else. That's where I'm trying to get to. It's hard because he's having problems right now with 4 chemos to go but if he gets to feeling better next month maybe I will too. (Not expecting, I guess hoping)

Family here seems to think everything should be done & fine now too. I don't think they realize we will have to wait 5 years to be sure. & then it could come back after that. He did tell one of them he would have to be checked for 5 years. She may "get it" a little more now. She sounded a little surprised. They don't live in our state tho.

Maybe you 2 could just go eat lunch somewhere together? Surely someone would come sit at your house for an hour while you go? I know I need to relax or walk or something. I'm gonna end up giving myself a heart attack if he don't do it first I hope it gets better.

[crazylife]

I feel the exact same way and have been feeling so guilty about it! My husband was diagnosed on November 6th. Liver and colon resected and starts chemo next week. I am terrified for my children and the future.

[GrouseMan]

I think we all worry a lot. My Wife has been fighting now 2.5 years. Never NED. Initially the Oncologist said she would have 2 to 5 years. Well - she has beat the two year mark at least. She is on Chemo for life and is tolerating it pretty well, though I see it is starting to take a toll on her. She sleeps a lot. Isn't as active as she use to be and quit running after she dropped out of a 10 K race last April that she trained for at the 5K mark, realizing that she just no longer had enough stamina anymore. I suspect that before long she may even give up working/training her dogs in the woods. She crashed and burned pretty good last weekend after we ran a couple of them while training to get them to hold point. They are puppies so we have to keep up or they will scoop the birds (Quail) out of their hiding spots and chase them. Its a really good workout trying to manage a puppy in a controlled manner in the woods.

About we all we can do is be supportive, try and not to remind them constantly that they have cancer, and to live their lives as fully as they can while they still can. I have a LOT of regrets about things we are never going to get to do together because of this disease. We built a home in the northwoods to retire to, and raise and train our dogs at. We sacrificed a lot to plan for retirement, and to have things paid for when that day was to come. We planned to travel the field trial circuit and watch our dogs compete. That's not going to happen now. We both need to work to pay the medical bills, maintain our insurance, she as long as she is able. We are going to have to sell that home and property up north now. She can't live there anyway as its in a backwoods area far from any decent Oncologists.

So - its not easy at all to deal with this disease as a patient or a caregiver. All we can do is take joy in the moment together I guess when we can.

Regards,

GrouseMan

[stu]

Hi.
So true Grouseman. I am in a different role as its my mum who is stage 4 and does a fantastic job of living with it for over six years. My dad has a stroke and can only cope with so much and quite dependent on me. No complaints as I am happy to do what I can. I do have an anxious disposition and have learnt the art of compartmentalising. But it comes out in odd ways. I become anxious about some completely unrelated issue which is not even based in reality. I remain silent and quite stoic so no one notices but I am aware of it.
However I do what I can and hope it is some help to them.
Kind regards
Stu

[AngelaN]

We had our two year cancerversary in Nov. We thought after 30 rounds of chemo, 2 surgeries, 2 ablations and 1 SBRT he would be NED. Then a month later, my DH has a new liver met. NOT SEEN ON CT DONE A MONTH BEFORE. WTF????? At some point you have to get caregiver fatigue. How much more can you take, always looking for the next treatment, the next clinical trial, the next plan expecting that you the caregiver will always find a way to fix it all. I will continue to fight for him until my last dying breath. But some days it's really hard to plan for the future when you can barely get though today.