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Stage III bladder cancer newbie caregiver
Hi all.. My husband was diagnosed with bladder cancer in late January. He is 48, and it is muscle invasive. they already took the tumor out (can’t remember the procedure name) on January 24th. The plan was to start chemo and go for a few rounds then take bladder AND prostate out, as that is the best course of action to help prevent a reoccurrence. We are having a tough time coming to accept this course of action. Particularly with the prostate. The bladder, I see, is a necessity. As a standard of care, all his physicians, have all echoed that prostate is an organ that needs to come out, as his cancer was muscle invasive. There was no metastasis thank God..but we did go for a 2nd opinion for surgical reasons only, with another surgical urologist. He came highly recommended. The previous one was sort of cold.
Needless to say, he agreed with all the other doctors, but his method for removal is laparoscopic, and he said that due to my husband’s age, he/we go the new bladder route. we were really glad he did.He also mentioned that if he could, he would go the nerve sparing route with prostate.He just finished round 2 of chemo
Methotrexate
Doxorubicin
Vinblastine
CisplatinThe first round was fairly tolerated, and he was tired A LOT, and along with that, some mild nausea. Headaches were severe.
After this 2nd round, (we are about 18 days into chemo), it seemed that he was tolerating it better, but on the 5th day, bam! He was down for the count. The worst of it was yesterday, when he was scheduled to work, but could barely make it out of bed. Anxiety, fear and all those emotions were present. I was working to help reduce his discomfort, but I am finding I am severely limited. I am giving him time, and letting him listen to his body. His hair, also is starting to come out, which as if all of these things weren’t bad enough, the cold finality of this sign is depressing to him, and even me. Nausea is a little worse too, but it seems that he is doing better, even if marginally.Another reason I am writing is because we are young, and haven’t been married 2 years yet. The thought of losing him FAR OUTWEIGHS the trauma and devastation of us not being intimate, but I want and hE REALLY wants to retain our intimacy. It might be different, but Icannot imagine our lives any other way. We have had a second chance and it is with each other. I am wondering if anyone else is struggling in this manner, being a caregiver, with guilt and helpless and hopelessness as well. I love, adore, and admire this man so much. I am struggling with not being able to do anything to make it go away and he is miserable.
It seems he’s not the same person, and I totally GET that.
I feel I need help, or someone that can shed some hope in this situation, or if any of you have husbands going through this, or have. If you were successful and HOW you made it through and if you have any sort of intimacy. Sorry for this being so long. I just need to reach out. Thank you -
8 Replies
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Thank you both for your reply I greatly appreciate .
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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
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021 -
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
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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
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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
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021 -
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.
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e3run,
You and your husband have had a lot thrown at you in a very short time. This site became important to me 18 months ago when I was finally diagnosed – my wife and I had lots of questions and found little in the way of answers. We were lost for the first months.
The following 50 page publication, “Sexuality for men with cancer”, from the website of the American Cancer Society helped explain the range of possibilities. It may be of help to both of you as it was for us.
Best
Jack
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again :)
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021 -
Hi, Survivor here and female but I do have a few words of encouragement. I was 48 also when diognoised with invasive bladder cancer. My husband and I were also each other’s second chance. That was in 2004 and the road was not easy but here we are still going strong. I lost my hair twice dealt with depression and recovery and a hundred others things. I couldn’t have done it without my husband though it all we have been partners. How did we do it? Imperfectly…with great love. One day at a time, just keep telling yourselves that each day of chemo every day of recovery is one day closer to the hope of wellness.
Much has been written about intimatcy in this form following Radical Cystectomy. I always think of one man who posted every time the subject comes up. He wrote about the fact that because they had to work through this situation that they have had to slow down and pay attention in a way they never had before. And because of that they had discovered a new deeper intimatcy than they had ever known before. I could only hope that for you and all of us going through this lucky enough to have a partner.
You are in the early days of all of this but for most of us after the panic subsides it is all about mind set. Every procedure is a step towards the prize, worry has never ever changed anything. It will take a while but one day you will be sitting at your computer writing something such as this to the new guy or gal on this forum and what you are going through right now will feel very long ago I hope.
If you are having trouble with side effects call the doctor they always have someone on call to help out that is what they are there for. They would rather know there is a problem before it get to be a bigger one. Most of us go through changes to our chemo meds and have taken something for depression. I started therapy during chemo and it helped having someone to talk to that I didn’t have to worry about upsetting. Many of us have been through the nausea and can give you tips. Never ever let your stomach get empty, saltines are your friend. Start the anti nausea meds before you need them and things such as this may help.
We welcome you as part of our community, please let us know if we can help we are here for you two.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
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