My husband has metastatic PC, badly missing support
My husband, 71, is dealing with metastatic PC and l am his sole caregiver. Would appreciate hearing from others in similar position. The big C isn't my only topic of interest, though. Thanks.
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Hi, my mom has metastatic pancreatic cancer. I’m her sole caretaker. I am here if you need support.
Thank you Amy for getting back. I hope your mother is, as far as possible, at least comfortable, not in pain… Unfortunately we have neither kids nor family we can count on. I'm trying hard to find some kind of support through the official channels such as hospital and health fund but it's tough! Wish you a peaceful day💐
@bigmaya It all sounds so difficult! Do you have friends or neighbors who can help some? I may be very incorrect but I interpret “metastatic PC” to mean pancreatic cancer. Please correct me if I’m wrong. I attached a link to pancan.org, a national organization of resources for patients and families.
What other organizations have you tried to reach?
Please let me know what you learn
@bigmaya Welcome to an amazing support team that no one wants to be on but once you are on it – we feel thankful. The Volunteer Mentors like Becky will help guide you to get resources. Similar caretakers like Amy @asugent will have your back and make great sounding boards. Within the Mayo blog, do some searching on pancreatic cancer to get insight and tips as to other caretakers' and patients' solutions to problems – stresses and issues can be reduced by both seeing that others have experienced similar issues and found ways to minimize them. I am a metastatic breast cancer "fighter" whose husband has been just terrific so I applaud you for reaching out. Sometimes a cancer patient feels that this is their journey, and hope to lessen the impact by not sharing. We keep working on our communication and finding ways to be "healthier" together even if it is a yoga class – yes my husband agreed to come – or trying some new foods. Or taking vitamins! Make sure you take care of yourself (just as much as you try to help your husband). Good luck and stay in touch!!
Hello Becky and thanks for responding!!
No, PC is prostate cancer… for what it's worth, l try to find some comfort in our family doctor's words a year ago "contrary to pancreatic cancer, for instance, PC is treatable" To your question, no, unfortunately it's just the two of us and our many felines…
I have been looking for some soul support everywhere. It's really rough and tough!!
Thankfully though, we have a great oncologist, both professionally and as a human… and my husband is, so l hope, well taken care of, as far as the medical part is concerned. We've now been referred to house hospice which is covered by our health fund. NO, it's not as l thought only for the terminally ill alone, but also for patients like my husband who are sometimes in pain and require extra attention, balanced medication, etc. It's a 24/7 service including a dr., nurse, social worker. Thank you.
@bigmama I was think about you today. Have you found any help for your husband? I know you can do it because you have to. Has Spring come to your area yet? Maybe he would love a wheelchair ride to see all the new life. Try it!
Yes, Spring and Passover are around the corner and it's quite pretty now. The carpenter will build some kind of a ramp to ease the wheelchair out… l had surgery for a broken hip last year, walk with a cane so l can't handle the wheelchair myself.
I wish we'd live in a community where people care and are there for each other but l see that only in US movies…. 🙏
I hope you are feeling well, doing fine and l thank you for taking the time to write.
As l mentioned to Becky we don't have friends, family or neighbors we can count on. It's just the two of us. Our health fund provides some assistance such as social workers' visits but that's it. Due to the painful side effects my husband was put on fentanyl patches which have only partly helped with pain… but hugely affect his gastro system and quality of life. They make him moody, sleepy, he feels like walking on clouds but in a negative way, complains of a foggy brain… l asked the pain Dr. to get back to me.
I very much miss having some contacts… as l mentioned, there are a lot of topics to correspond about. Thank you💐
I presume you reside out side the US? Is the fentanyl dose helping his pain? Could he use a lower dose than currently prescribed? Also, speak with his doctors about switching him to buprenorphine for pain instead of fentanyl. Buprenorphine works differently from other narcotics like fentanyl and affects different brain receptors and does not have same side effects as fentanyl. I use buprenorphine patches 20mcg/hour x7 days and it provides 24/7 chronic pain relief and is recommended for cancer pain treatment. PC is typically a very slow growing cancer and I’m sorry he’s been suffering over the years. Have you tried reaching out to your community for relief or speak with your visiting nurse about it too?
Thank you for getting back🙏 No, we don't live in the US. My husband hated what the fentanyl did to him, took him weeks to be himself again. He's now getting by with Lyrica which helps him relax and lessen the pain. We'll see the radio people on Monday and he'll have a new biopsy Tuesday.
Unfortunately we don't have a community, l only see neighbors coming over with food and caring for each other in US movies… Of course there are social workers, a nurse/doctor doing home visits, a couple of volunteers looking in. The team at the hospital is excellent, caring, kind, patient and everthing is free!! Our health fund covers all costs including transport from the hospital back home. BUT when we get home it's rather lonely as we have no family or friends.