Cancer caregiver support?

[spr1975wshs]

Hey all;

I am doing much better than average, I believe, in the course of this bout with pancreatic cancer. It's been 15 weeks since I got the diagnosis and surgical recommendation. The side effects from chemo have been relatively mild, with fatigue and suppressed immune system being the lingering concerns. The oncologist is encouraged that I'm at the same weight as when I left the hospital after surgery (Tuesday made 12 weeks since the surgery) and by what she is not seeing in my blood work.

My wife has been doing pretty well, but needs some more support than I can give her. Medstar - Saint Mary's has a monthly support group, but that's passed for now. She's a disabled vet, and was out of work for 15 years dealing with PTSD and other emotional effects of her injuries. Today makes 3 years that she's been working for Navair. My illness on top of trying to do a good job and learn the new things she needs to have been quite stressful.

Have been doing an online search, but the preponderance of what I'm finding is for those with breast cancer and their families. Will continue looking, but am asking here for other ideas.

Thanks in advance.

 

[bilbur]

Hey all;

I am doing much better than average, I believe, in the course of this bout with pancreatic cancer. It's been 15 weeks since I got the diagnosis and surgical recommendation. The side effects from chemo have been relatively mild, with fatigue and suppressed immune system being the lingering concerns. The oncologist is encouraged that I'm at the same weight as when I left the hospital after surgery (Tuesday made 12 weeks ago since the surgery) and by what she is not seeing in my blood work.

My wife has been doing pretty well, but needs some more support than I can give her. Medstar - Saint Mary's has a monthly support group, but that's passed for now. She's a disabled vet, and was out of work for 15 years dealing with PTSD and other emotional effects of her injuries. Today makes 3 years that she's been working for Navair. My illness on top of trying to do a good job and learn the new things she needs to have been quite stressful.

Have been doing an online search, but the preponderance of what I'm finding is for those with breast cancer and their families. Will continue looking, but am asking here for other ideas.

Thanks in advance.

Check Facebook, they have many support groups for different things and the members post experiences and helpful tips all the time.

 

[spr1975wshs]

Check Facebook, they have many support groups for different things and the members post experiences and helpful tips all the time.

Will do, had not thought of FB as a serious resource.

 

[Chris0nllyn]

I have a close family friend going through a similar situation.

Best of luck, and god speed.

 

[MADPEBS1]

i would check with NAVAIR, i know Calvert County Gov has an employee support team. that help their employees. Would hope NAVAIR also has support like this.

 

[libertytyranny]

Also, if she is cvivvie or a contractor both have EAP (employee assistance programs) (find through HR or online for civvies) that have free counseling. Most you can pick your counselor and everything..that will give her and you if you want, someone to talk to who can give recommendations for support groups and resources.

 

[SEABREEZE 1957]

I also believe the clinic on base has support programs. http://www.med.navy.mil/sites/paxriver/Pages/cm.html

I wish you and your wife the best; your positive attitude is a very good thing.

 

[PeoplesElbow]

My dad passed away from pancreatic cancer, he did manage to live for 5 years with it though. Hang in there, get plenty of fresh air and exercise if you can.

 

[Bann]

Also, if she is cvivvie or a contractor both have EAP (employee assistance programs) (find through HR or online for civvies) that have free counseling. Most you can pick your counselor and everything..that will give her and you if you want, someone to talk to who can give recommendations for support groups and resources.

Keep up the positive outlook, I wish you all the best, spr1975.

 

[littlelady]

I have no info to offer you, but wanted you to know you are in my prayers, and I wish you a speedy recovery.

It sounds like your wife is awesome, and has the same positive attitude as you do. Wishing you both the best.

 

[spr1975wshs]

On the days I'm not working (or undergoing chemo) I try and walk at least one loop around the neighborhood, which is .8 miles. Many days I feel well enough I get in 2 1/2 loops for 2 miles, and some days I feel well enough I do 3 full loops, even did 4 loops a couple days.

I know I have a potentially fatal disease, but I refuse to be sick.

 

[MADPEBS1]

suxs really does, keep the FIGHT UP and stay POSITIVE !!!!!!!!!!!!!!!!!!!!!!!!!!!!!

 

[PeoplesElbow]

I refuse to be sick.

Best thing you can do.

How are you doing with the chemo? My dad had a round of radiation/chemo then 3 rounds of chemo over the years and only got sick once. He died 10 years ago and they kept telling him how much better the drugs were then than they were just 10 years earlier, hope they are even better now since its been 10 years.

 

[spr1975wshs]

I am doing pretty well, main side effect I have is fatigue that knocks the snot out of me on chemo day. My treatment is mid-morning on Tuesdays (2 weeks on, 1 week off) and by a little after lunch I am napping. The fatigue lingers 2 or 3 days. I also get flu-like symptoms and my blood counts get wonky. However, no nausea/vomiting, hair seems okay thus far and am not getting much in the way of any of the other effects I was told were possible (no mouth sores, no bruising...).

The report I got from the surgeon and pathologist was cautiously optimistic that the tumor and associated tissue was completely removed, spread was minimal (only 4 of 29 lymph nodes and just starting to involve the surface of the small intestines), no signs of any malignancy in any other organ... Oncologist was happy with what she did not see in the pre-chemo CT scan and blood panel.

So, I have cause for hope. I shall also say that none of the doctors have blown any smoke at me.

 

[spr1975wshs]

Update: On Tuesday, stopped for lunch at Bob Evans after Chemo. Anita had toast and sausage gravy, I had steak and eggs with hash browns.

Blood counts were back in the normal range, lab work from last week looking good, too. Oncologist said it looks like the elevated liver enzymes I've been having, follow the chemo treatments, so no worries there. Kidney enzymes look good. Tumor markers negligible.

CT Scan - Chest, Abdomen and Pelvic region covered...some mild dilation of what is left of the bile duct, likely scarring from the operation...other, normal scarring...NO obvious recurrence, NO evidence of metastasis...thus far. Direct quote: "The pancreatic remnant is unremarkable."

This is an aggressive cancer, and can recur. A good quote I will keep in mind, which one of my correspondents at the support group's doctor told them (on their 10 year anniversary); "You will not likely die from this cancer, but you will die with it."

So, looking good on this day, which is 18 weeks out from the surgery and almost 21 weeks out from the diagnosis.

Am less cautious about being optimistic for a good outcome. Did find a support group on Facebook for patients, caregivers and family; Anita and i joined. They also have a subgroup just for caregivers; Anita joined. My wife did take the suggestion and called the EAP line.

 

[Roman]

This sounds like good news spr1975wshs! It helps to have someone to talk to, so it's good that you have a support group. I went out of state for my cancer, because I wanted a Specialty Hospital. Are you being cared for locally? What ever it is that they're doing, it's doing good.

 

[spr1975wshs]

Thank you Roman. I had the diagnostic procedures and surgery at University of Maryland Medical Center in Baltimore. My doctor and his supervisor down here admitted that Medstar Saint Marys wasn't up to the challenge and found one of the bigger, better skilled hospitals to take me. The surgeon (Dr H Richard Alexander) is very experienced and has a really good bedside manner. My mom's Italian (both of her parents were born there), so you can imagine what she's like when one of her bambinos is sick. Dr Alexander sat down with her after the surgery to explain everything and his opinion of the eventual outcome. He got her not just calmed, but happy with him. I'd recommend that anyone with an abdominal cancer seek him out. He is also a professor of surgery, so much of the procedure was performed by his top resident, who also fixed a hernia I had around my naval.

When I went at the 3 weeks point to have the staples out, he excused himself for awhile, went to research oncologists here in Saint Marys and set me up with Dr Minal Shah at the Wildewood Cancer Recovery Center. Very happy with her and the nurses there. I'm fortunate that they caught it early enough for surgery, rate is down to 15% of Pancreatic cancer patients. I'm only getting an anti-nausea drug and then the single chemo drug in a single session each week (2 weeks chemo, 1 week lab work).

 

[littlelady]

Thank you Roman. I had the diagnostic procedures and surgery at University of Maryland Medical Center in Baltimore. My doctor and his supervisor down here admitted that Medstar Saint Marys wasn't up to the challenge and found one of the bigger, better skilled hospitals to take me. The surgeon (Dr H Richard Alexander) is very experienced and has a really good bedside manner. My mom's Italian (both of her parents were born there), so you can imagine what she's like when one of her bambinos is sick. Dr Alexander sat down with her after the surgery to explain everything and his opinion of the eventual outcome. He got her not just calmed, but happy with him. I'd recommend that anyone with an abdominal cancer seek him out. He is also a professor of surgery, so much of the procedure was performed by his top resident, who also fixed a hernia I had around my naval.

When I went at the 3 weeks point to have the staples out, he excused himself for awhile, went to research oncologists here in Saint Marys and set me up with Dr Minal Shah at the Wildewood Cancer Recovery Center. Very happy with her and the nurses there. I'm fortunate that they caught it early enough for surgery, rate is down to 15% of Pancreatic cancer patients. I'm only getting an anti-nausea drug and then the single chemo drug in a single session each week (2 weeks chemo, 1 week lab work).

Really good news. I love your mother already. I grew up with an Italian fam next door and all they talked at home was Italian. I loved going over there. Plus, they taught me to make a mean homemade sauce, and grew all their own ingredients. My daughter married into an Italian fam; last name Falcone. I am so happy about that! Still wishing you the best of luck. It sounds good. Prayers still going. Take care.

 

[somdforever]

Please don't take this the wrong way, but you can check with Hospice of St. Mary's. I'm sure they know of many support groups in the area. Good luck to you and our very best wishes to you and yours.

 

[spr1975wshs]

No worries somdforever. I am willing to entertain all suggestions for help.