I need lots of advice about my role a... - Prostate Cancer C...

Prostate Cancer Caregivers

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I need lots of advice about my role as a caretaker.

supportingmylove profile image

My partner had Robotic Prostatectomy 11 days ago. I stayed with him for 10, and waited on him hand and foot. Through my back out assisting him in and out of the bed. But I live and work 2 hours away. I feel so guilty for leaving him but could not get extra time off work.

Anyway, today he overdid it. Wiped off his car and probably other things around the house, and tonight he had some bleeding. I feel responsible.

Questions:

1- I keep reading that bleeding at this stage is normal, as the surgery site scabs, there will be blood. But for how long?

2- Survivors. How do you address your feelings? I think partner is going to really suffer if he doesn’t address the fear and depression he’s dealing with. I can tell from the self deprecating comments that he’s trying to make light of his sadness. I don’t know what to do to help.

3- Sex, how do deal with the issue of sex. I’m 10 years younger than him and while I enjoy sex, it’s not a priority for me. Him, on the other hand, (prior to surgery) would literally have sex 3 times a day if I agreed to it. But now he wants to engage in pleasing me orally. But I don’t really want it. But I feel like he will react as if I am rejecting him if I tell him no right now. Suggestions?

4- I know it’s a ways down the road, but after his biopsy, there was a lot of blood when he ejaculated. It traumatized me. I’m honestly still having trouble being intimate because of it. How is your sex life after suregery?

Sorry for the details, but I’m looking for some encouragement. The hard(er) part is that our relationship is already on shakey ground, and I was on the verge of ending the relationship when he got the word about having the surgery. Now I can’t tell why I’m here exactly. But since I’m seeing my commitment through, I want to bring the best of me to the situation.

I know every man/situation is unique. And I am talking to my therapist (believe me!). But I sought out this group to get support, encouragement and guidance from people that have been down the road I’m headed on. So, your advice is greatly appreciated.

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supportingmylove
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12 Replies
Lyubov profile image
Lyubov

You're in a highly complicated situation. Your partner has experienced terrible trauma -- physical, emotional & mental. Healing will take a long time with loving support. You're in a tough situation, living two hours away. And, it's understandable that you find yourself confused & conflicted given this is a new relationship & you had already developed misgivings. So now the guilt. Talking to professional therapist(s) -- both of you -- would help. Reading up on prostate cancer (PCa) is essential to help you appreciate what is involved & the impact on the man. Most are devastated as their sense of manhood is often deeply tied to their sexual performance. There are several good books but I don't remember titles off the top of my head. I'll write again with one or two that might be helpful. Good luck.

Yadifan profile image
Yadifan

I'm sorry I don't have any advice for you regarding what you're going through. There are a lot of posts of women that just need to vent. I'm a big fan of HU and have found it to be a wealth of information. Please stay here. I hope you find some help and answers.

Lyubov profile image
Lyubov

Here's a suggestion from one of our male members who refers to it as the Bible of Prostate Cancer How to Survive Prostate Cancer, by Dr. Patrick Walsh (John Hopkins). Here's the link to Amazon.com (Just copy & paste into your browser) or check your local library

amazon.com/Patrick-Walshs-S...

Hope you stay in touch here.

Darryl profile image
DarrylPartner in reply to Lyubov

You might find value in this. youtu.be/NZ5fc9LP0io

Lyubov profile image
Lyubov in reply to Darryl

Daryll, I responded to "supportingmylove" whose post is at very top of this thread. Since, then, she has not posted, so I am not clear what the situation is. I personally was not looking for recommendations of books, etc., but am pleased to see how many have been posted. If I should ever find the time to prepare a list of at least some major titles, I shall.

veteransurvivor profile image
veteransurvivor

I agree with Lyubov on all points. Where are you located? When I went through my surgery 18 years ago, a local (actually National) support group was very helpful. 1. you can get information about Prostate Cancer sent to you, 2. there are local meetings where Cancer patients, or about to be patients, and their spouses/partners can ask questions and get feedback immediately from others who have been through similar situations.

IMPORTANT your friend should check back with his Doctor concerning the bleeding, and should be referred to the Hospital social workers regarding the emotional issues.

Sex -- is possible after surgery, but you need a lot more information, and you both need to be willing to adapt. Some couples actually say that sex AFTER surgery is better. That is because the needed to, and were willing to communicate, and to actually make an effort to find alternative ways of achieving intimacy, sexual intercourse, and stimulation, and orgasm both with and without intercourse. Perhaps manual, rather than oral stimulation would be enjoyable, and let him know that he can still bring you to orgasm. There is much to be said about caring touching without orgasm as a goal.

I would have to look up specific titles, but an internet search for other support groups, or the patient library at a Cancer hospital would be useful in locating

I am a Cancer Advocate for a local Cancer Hospital. I have been through prostatectomy, radiation, Androgen Deprivation Therapy, and Cryogenic Ablation of metastatic Cancer.

Encourage your partner by telling him, "There IS life AFTER Cancer".

Cleodwoman profile image
CleodwomanModerator

Thank you for trusting us and being so open about your situation.

I feel like we all deal with the same areas at some point. Some at a higher degree than others.

1- Some bleeding is still normal. It will subside and it should be less as the days go by. Everyone heals differently so it can be a couple of weeks. I believe that if it goes on for a month, the bleeding is not subsiding and there are signs of infection (redness, warmth, discharge, odor, fever, or chills) he should call his doctor right away. I don't think there will be any more bleeding on ejaculation. All of the above is just coming from my nursing experience.

2- How do we address our feelings? I still wonder how we do it! Sometimes, we must take it day by day. Other days, just cry and let it all out. Other times we just have to focus on the positive, he is still alive and has the chance to fight!

You are going to have different emotions than him. Remember, you cannot help someone if you don't help yourself first. Having control of your emotions and being able to process them will be very beneficial for you. Then, you can be a shoulder for him to cry on. You both are walking the same path but seeing, thinking, and feeling completely different things. You both are grieving something. You are grieving the loss of what was a "normal" relationship, the security of a possible happily ever after. He is grieving the loss of his health and manhood. He is also changing as a person. Cancer will change him. He is grieving the loss of himself. You will also change with this experience.

I remember forcing Cleodman to therapy, for my sanity. It helped me more than it helped him because what I needed was to express all my fears. He knew exactly what he was feeling and where he was at. No one can force a person to face his depression or fears. We can encourage them by communicating and holding space for them. Cleodman had a dark sense of humor and that's how he dealt with it. In the beginning, when he made jokes about him dying, I would burst into tears. After a conversation, he told me that's how he dealt with it. Healthy? Probably not. But it was something that comforted him and for some reason, it gave him the idea that it was a way of making me stronger. To that, I would roll my eyes at him and eventually was able to return his dark humor.

In short, hold space for him. Communicate, ask him how he is feeling, not physically but emotionally. Acknowledge the fact that he has lost something. He may not want to talk about it and that's ok. At least he will know that you are there for him. Don't assume how he feels. Also, remember that our men may try to hide their feelings because they don't want to see us get hurt. I am not saying hide your feelings, but you can also be open with him and tell him how you are feeling and encourage him to see you both as a team, fighting this TOGETHER.

I would always tell Cleodman "we are a team" and as a team, we pick each other up when we are down and when we are happy, we celebrate together. Eventually, you both will be able to support each other when one of you is having a day. But it will take time and lots of communication. Once that happens, you both will be in sync and be walking on the same path talking and sharing what each of you is seeing, thinking, and feeling.

3- Sex is a huge topic. Since I have a few things to say about that, I will make a separate post.

Deciding to stay in the relationship is a big commitment. All relationships take work and even if things were great before, a prostate cancer diagnosis will for sure rock the boat in any relationship. In my opinion, all you can do is be there 100%, that's the only way you can avoid feeling guilty, if you know in your heart you are doing everything possible there's no reason to feel guilty. Being a caretaker is not easy, so be kind to yourself. Some things will be out of our hands and all we can do is work with what we have.

I'm sorry all of us are going through this. I am not an expert at this at all, I am just an expert on my experience. I hope my words help you a bit or at least bring you some comfort in knowing that there will be good days and those are the days you need to treasure. You are stronger than you think. Talking about it is a huge step and look, you are already doing research. Please keep reaching out.

Darryl profile image
DarrylPartner in reply to Cleodwoman

Excellent post

Lyubov profile image
Lyubov in reply to Cleodwoman

What superb post you have shared here! I hope the original questioner, "Supportingmylove" sees & reads it. She hasn't appeared here since her original post. Perhaps you could PM her, Cleodwoman? I would, but am so involved with my husband's deteriorating condition that I cannot. Just a thought, and thanks again.

Cleodwoman profile image
CleodwomanModerator in reply to Lyubov

Hi Lyubov, good idea- I did message her. No response. I hope they are both doing ok 🙏🏻

Lyubov profile image
Lyubov in reply to Cleodwoman

Thanks! I shared this with my husband (printed it out) & still am waiting for him to read it!!!

Hello - supporting caregiver here. If you would like to talk privately, please message me. My husband at age 58 was diagnosed at an annual well visit. He was diagnosed with advanced prostate cancer after his diagnosis.

1. Bleeding is normal from what I read. My husband could not have surgery due to his diagnosis being very advanced. He did have bleeding after the biopsy. This bleeding lasted a couple weeks.

2. As a caregiver with an advanced stage husband/partner of 30 years we talk about survival. We are together non stop which is a little different than before because we moved my husbands office into our home.

3. We wish we could have sex but it's a non issue. We love each other very much and we are life partners until the end. There are men on this site that are able to have sex and some that do not. Communication is key. We have fun going out to dinner and being with friends and our family. Our family and friends have been very supportive.

Our adult children changed up their lives and moved across the country to be close. We are grateful for this. It's important to communicate to all of family members when you need help for various everyday issues. We need help with moving things around the house, help with the dog if we are at the oncologist for most of the day.

I hope that your partner heals and is able to get back to his everyday activities. From what I have read on this site, no questions go unanswered. You will be able to talk to many men that have gone through the same surgery as your partner.

Good luck in this healing process.

💙

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