Talking Frankly about Living with Advanced Cancer

Thanks for reaching out Colleen. I am pretty sure the online support group is the only option but I am checking with the social worker who runs that group. I will let you both know when I hear back.

Hi @lexgorman, welcome. I’m tagging @muradangie who may be able to steer you in the right direction to find a support group in Jacksonville, FL for caregivers supporting loved ones with metastatic cancer.

I know that you asked about in-person support. However many support groups have temporarily or permanently moved to meeting online (Zoom). For example, this caregivers group:
- Caring for the Caregiver Support Group (Florida) https://connect.mayoclinic.org/event/caring-for-the-caregiver-support-group-florida-12/
They meet on Thursdays from 11-12. He is welcome to join this Thursday.

Lex, how are you doing?

Hi friends,
I'm 41 years old and five years into my journey with metastatic breast cancer (MBC).
My husband and I are new to the Jacksonville area and he is in need of some social support / group talk therapy.
I'm trying to find a support group --ideally one that meets in person -- for spouses/caregivers with loved ones who have MBC or advanced cancer of any kind.
Any thoughts/suggestions are greatly appreciated.
Thank you!

Thank you for your comfort and care but deep in my heart I know there are trials out there for him to try! While there may be no cure there is certainly trials that can really prolong his life and maybe put him in remission!

If it can’t save his life then maybe with the trials it can certainly help progress in finding a cure.

I have a brother-in-law that died of pancreatic cancer over 40 years ago and I think he lived for two years with treatment. But sadly I haven’t seen a lot of progress made in a cure for it until now. Maybe I just notice it more since my son has it now!

The PanCan organization are doing a lot of research with this cancer and there are people that are in remission as we speak. So if nothing else it does give me hope that if we can buy time then they could find a cure any day now! That’s my biggest prayer right now. So any prayers would be greatly appreciated and thank you again for the message.

I have thought that maybe it would be a good thing to seek counseling or a minister to help. But I don’t think she would go for that and I don’t feel close enough to ask her.

Thank you for your advice and I will have to think about approaching the subject with her!

BaboinWV

@baboinwv, my heart goes out to you. Families can be challenging, especially during a health crisis.

Your son has stage IV metastatic pancreatic cancer. It is unlikely that a cure is possible (sorry, I know that is hard to hear.) Putting energy into "advocating for his cure" may not be where your son wishes to expend his energy. His focus now is on quality of life and his oncology and palliative care team are focusing on comfort care.

While you and your son's partner may not get along, keep in mind that you share a man that you both love very dearly. It pains both of you to see him suffer. Might you bridge your differences by talking to her about the love you share and to talk about the goals of treatment for your son, i.e., comfort care? Does he have a palliative care team?

Another thought is to talk with a palliative social worker or an oncology social worker. They can offer support to family members as well as patients. They are there for you. Here is more information about oncology social workers.
– How an Oncology Social Worker Can Help https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/how-an-oncology-social-worker-can-help/

Courage and peace to you.

Any and all comments are welcome because any advise will be helpful at this point! My son, who is 53, has been diagnosed with stage IV metastatic pancreatic cancer. Here is my dilemma he has lived with a woman for four years but never married her and really had an aversion to it considering his last history of two breakups. When he found out about his diagnosis they got married! Now given he has chemo brain all the time he has turned his health decisions over to this woman and she and I do not get along at all! All that aside I feel like they aren’t advocating for his cure but putting band aids on his cancer with chemotherapy! I realize Chemo is a necessary evil for metastatic cancer but I think there are other options with trials that several organizations can help you with. But she just ignores anything I say and I will message her with articles that could be critical to his care. Overall if she were a hospice nurse I would fire her for sure. How do I make him understand this is his life he’s toying with and he has to become proactive. He’s really sick from the chemo and seems he’s in pain a lot even with a 25mg Fentanyl patch and hydrocodone (?) in between. I text her asking questions and she totally ignores anything I ask or say. This is my son and only child and I need some help in dealing with this woman! HELP!

Welcome, Gary! Am I right in assuming that the tumor found in the brain was metastatic colon cancer?
Dealing with cancer treatments during the pandemic added new challenges. I'm sure those were compounded by also catching COVID. I'm glad your symptoms were manageable.

I'd love to see a picture of the bike. It sounds amazing. How are you liking it? Does it inspire you to use it regularly and faithfully?

I am living with Stage4 cancer. I was negligent about keeping up to date with colonoscopies. Ended up with a colon surgery in February of 2017. Surgeon felt he had gotten it all. In NOVEMBER 2020 I had balance issues and other neurologicalsymptoms. December 7 2020 I had brain surgery inRochester. Quite large cancerous growth (2.5 cm x 60cm) removed from right temporal lobe. Stayed at St. Mary's for 2 or three nights. Started chemo in January. Chemo interrupted couple weeks later by a case of covid. Symptoms mild. I have since had 2 Covid vaccinations and two boosters. Have had two or three Gamma knife treatments and one course of whole brain
radiation. Three weeks purchased a recumbent adult tricycle. Physical Therapist recommended high back seat for comfort and control. Good for both strength and limbering up knees and rest of legs
All for now Gary

high back

OMG 6 mths into stage 4 MBC , and I'm starting to get that feeling also ... Like "but you look so good " "You dont LOOK like you have cancer " etc and family afraid to call , or choose not to hear the "cancer stuff " , as if I chose it , LOL !! So more and more when the phone rin gs , its a cancer appt reminder or similar unfun thing .. WAY too much time to sit and look at that calender , since forced to retire without warning , and I hate that . I feel like a healthy person with stage 4 MBC . SO lucky in most all health areas , so fortunate all my life with that til now ..Dont smoke , or drink , pretty good at eating my veggies , grow organically , etc etc .. just this wiley virus foe ! Instead of support or encouragement it feels like bewilderment .. Started painting rocks w
red hearts and leaving them all over , in trees , parking lots , gardens , mailboxes.. Quilting some for Meals on Wheels gift shop nearby .. PET scan tomorrow has me worried , but it is what it is ... Wish me luck !

You are both realistic and basically positive and we to be. Ask your doctor about a low dose antidepressant like Elavil. I do not not like to take these type drug but my oncologist insisted when my CA mets showed up and like you I worried about my family and self. It has helped and finding positive things to dwell on as well. Local plants and birds are a great focus for me. I often sit in the door of the garage and just enjoy nature, out of the sun but can feal the breeze. Keep up that head as you are a wonderful person and deserve every day. Enjoy them. Keep us informed. Brenda