Stage III bladder cancer newbie caregiver

Thank you both for your reply I greatly appreciate .

Celine,

I understand completely where you're coming from in this. And lots of times mentioning that we are a team it helps, but there are other times when sometimes I think he plays a pity card. I don't want to be ugly at all, but whenever I ask him how he is or I sometimes get sensitive he will say that he's the one with cancer and has had surgery and it almost sounds belittling. I started this post over four months ago and he has gotten his hair back he had a radical cystectomy with prospect to me and he is currently stent free and catheter free. But is limited with his energy and I've noticed that he really does take things out on those he loves. And he is not the type to seek help. It's like it takes an act of God! But I am still very supportive or try to be. Sometimes he sees me is hovering, and I guess it's annoying. But I understand what you mean about it being hard to help somebody who doesn't want to be helped. And sometimes they withdraw with in themselves. I would keep on keeping on, because this makes you realize what you have and not take it for granted. He just must feel bad for putting the burden on you.
He doesn't mean it I know, but it's just still very frustrating.
Thanks everybody for their comments, and for words of encouragement. It doesn't feel helpless like I thought it would. I won't lie, there are days where it's just depressing and I know that we aren't the same couple anymore.

Celine,

You describe the situation well, and I imagine that most of us have seen couples have similar difficulties (not necessarily medical in nature). An external problem is dividing a couple, and the couple is not able to resolve the issue alone. This is not an uncommon problem with a major medical situation.

Talk to you doctor, get a referral to support - a social worker with experience in dealing with the divide created by serious illness. Issues of hurt, fear, guilt, blame and trying to protect others from the effects of the illness can all be involved. An experienced third party may be able to get the relationship back on track.

As the caregiver and main support, you may be in need of some additional support . You are facing a tough challenge. More so if the patient becomes withdrawn. Thank you for being there for your husband.

Again, talk to the doctor/ care team. Take with you a copy of your postings that describe the situation so clearly. Add one more task to the care that is provided for the both of you.

It happens. It is a tough time. We are all new to the problems cancer causes. Ask for help with ALL problems that pop up.

I wish the best for you and your husband.

Best
Jack

Jack R
Reading your experience I totally agree with WE HAVE CANCER but how do I get him to see, he is not alone, he tries to push me away. I understand his situation, he lost his wife of 25 years to thyroid cancer over 10 years ago. We know each other since 7 years and been leaving together for the past 3 years when I took early retirement to be with him. He went through hell and back with his wife treatment and all, he doesn't want me to go through this I GET THAT but he cannot do this alone, he can barely remember when he has a treatment scheduled. it's very hard to help someone who doesn't want to be help. When it gets bad I have to force a conversation and keep on saying TEAM WORK, it only works for a few days. Now it feels like he only sees me as a caregiver,taxi driver, cook, etc... He displays absolutely no sign of affection ( I'm not asking for sex, I'm asking for a hug, a conversation, a display of deep friendship) but all I am to him now is just a caregiver not his partner, it's very hard to live this way but I will hold on and see this through but I'm frankly questioning if this relationship will survive after he recovers. We know of this cancer since 6 months but at the beginning he tried the holistic way which didn't work. He's starting his 2nd round of chemo today. Can someone help me with their own experience on how to make him understand he's not alone and what can I do to help save this relationship. I need him in my life as much as he needs me.

Celine

e3run,

My wife of 51 years uses the term, "WE have cancer". This disease affects both of us. Over the years, various events - some welcomed, some not - have caused changes in our life together, and together we have always adjusted to a "new normal". We have and will make adjustments as needed for treating and living with cancer
.
My wife is the key player on my care team, even as she feel the impact of changes. She is my number one supporter, and the one holds medical people accountable for following through with plans. At doctor appointments she asks questions until she gets answers that make sense. Somehow, she manages to be there during treatments and hospitalizations, keeping track of the "small" details such as getting the correct medications on time and of the prescribed dosage.

I am flat on my back and lose most of three days after every treatment. She picks up the slack. She is affected by this disease as much as I am, but in a different way. She is right; WE have cancer.
Most important to us, we have worked through, and talked through, the changes that have entered our lives. Cancer is not the first serious medical issue that we have faced together. Together, as a team, we will get through this, wherever it takes us.

We have also learned to USE the medical care team to the fullest extent. Spill your guts, fears and concerns to the doctors and others on your care team. When you need help, ask. When you are concerned, ask. When you have ANY questions, ask. There are lots of unknowns and uncertainties ahead. Know who you can call anytime, with any question, and get a prompt answer of referral. Do not accept that the two of you are supposed to go through this time of changes without having full time support from your care team.

The initial shock will wear off. Both of you will, together, will adjust to your new normal. It will get easier. Together you will face down this disease.

Best
Jack

Thanks to both of you. I feel bad about everything. I have never felt this way about anyone and I just want him whole. I want us on the right track, and I want him alive. That is the biggest thing. When he gets his treatments it's not as bad. It's action time, in my head. It's when it hits, and the symptoms hit, and he's just down for the count. It floors me.

I know it has to be scary for you guys! But you're living proof and an inspiration.
I'm only the caregiver.

Thank you.