tess
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Hi Stan, your situation is definitely shared by many & it’s certainly not an easy one. My Mom, who was the primary caregiver or my Dad when he was fighting cc, suggested that perhaps social services may be of assistance. In my Dad’s case, the oncologist recommended social services & they sent someone out to train Mom on how to change/clean Dad’s bili cath site, change bandages, give meds, answer questions, etc., at home. This may benefit any caregivers that you have onsite. Mom also suggested that your local office of the aging/senior services center may have resources- specific to home health care aides, visiting nurses, individuals qualified to sit with/care for your Dad, etc.. Our local hospital also offers a service in which volunteers (or less medically qualified individuals) come in to sit with/read to/talk to patients. In my experiences with such people, they are equally as beneficial to familial caregivers like your Mom, even if its just to share a coffee or talk about how Dad is doing that day, fears, etc. I’d recommend background checks/letters of recommendation if you do opt for someone of this nature. Word of mouth, as others have suggested, may assist in locating you someone you know- that may be able to assist…. even if it’s just to give you, your brother and your Mom periodic breaks (which are a must).
The greatest challenge may be your Mom’s (natural and understandable) fears of bringing someone else into her home. It will not be easy, but breaking her in slowly may help.
Your family is in our prayers.
-Tess
Hi Diane, and welcome! You’re a fighter, this is clear….
Wishing you continued strength and we look forward to hearing more from you!
-Tess
Hi Kay, Wonderful news about your Dad & an upcoming 2 yr. anniversary of being cancer free! Great to hear!
Someone was just talking about this same thing yeserday on another thread. Per our experience, my Dad’s oncologist told him that the three primary diagnostic tools that he looked at to monitor the status of the cc included the bili levels, tumor size and the CA-19 marker. There are so many unknowns with this cancer! I’d say continue to keep a close eye and make sure the docs. stay on it.
Best wishes to you and your Dad.
Tess
Dearest Marion and Pauline, I write to you with tears in my eyes… in hopes that actions such as yours will continue to give rise to collaborations that save lives. I feel like there is an entire cc community that has passed on, sending thanks from the other side. Let their spirits give you energy to keep going!
Hugs,
TessHi Janet, just wanted to send you wishes for strength. I see my Mom going through what you’re going through, and I think it’s one of the greatest challenges she’s had to face over the last couple months, since Dad’s passing…. the logistics of paperwork. It is a terrible stress to add to a griever’s plate.
One day at a time. I find a vase of fresh flowers helps the process of filling out paperwork and cleaning the house. Every once in awhile we have to get these for ourselves, instead of waiting for someone to bring them to us!
Sending well wishes your way!
-Tess
Hello Asif, we are very sorry to hear what your family is going through. I found the following doctor to be helpful from a distance….
Dr. Ronald DeMatteo
Department of Surgery
Head, Division of General Surgical Oncology;
Director, General Surgical Oncology Fellowship Program
Phone; 212-639-5726
Online Bio: http://www.mskcc.org/prg/prg/bios/542.cfmMailing address: Dr. Ronald DeMatteo
Attn (Receptionist): Betty
Room C8911275 York Ave.
New York, NY 10065, USAWe found DeMatteo’s office willing to review Dad’s records and scans, without having to travel there. They also told us that we had to send the scans on CD – through postal mail, as the resolution would not transfer appropriately when sending the scans through e-mail. They also recomended that we send them with a tracking number.
Wishing your brother all the best,
Tess
Hi Danielle, I am so sorry for what you are going through. I lost my Dad just 4 months ago this week. Today was one of the first days that I was really comfortable being alone with his ashes, between bouts of tears. I have found that the process of surrendering to the tears and grief has made me stronger. Sometimes I simply don’t have the strength to come to this site, and sometimes I have to stop people from asking about Dad – because the belly knot is too much.
I know that Dads-to-husbands are apples-to-oranges in many ways, but I wanted to tell you that I’m sorry for your grief. You’re in my prayers.
Hugs,
TessThat is great news Trevor, we all wish you continued success with the transplant eligibility!! It was our experience with my Dad that the CA-19 tumor marker was just one of several diagnostic tools used to monitor his health, it did fluxuate in response to his chemo treatments, he never received radiation. As the others indicated- it tells just a portion of the story. Two other key factors of most significant interest to his oncologist, included his bili levels and tumor size.
Wishing you all the best Trevor. Keep us posted!
Tess
My heart goes out to you Jill, what a terribly tough time you must be experiencing. I’m so sorry for your loss, you’re in my prayers.
Hugs,
TessHi Heather, I follow Kris in sending many hugs your way. I wish I could offer words of comfort, but I don’t yet know the secret to that hurdle that you mention… what the mere mention of a name can do, the one that knocks the air right out of you. I just wanted to tell you that I feel your pain and that you’re not alone. It’s ok to cry, and to hurt, and feel the hopelessness, don’t feel bad about that. Your strength will come back, just remember to do a little something extra for yourself- you need the TLC now- perhaps more than ever.
Send hugs & well wishes to you!
Tess
I followed Rose’s journey on this site and her own, since she joined the group. While I never met her, I felt like I knew her and shed so many tears at her struggle. She appeared to have a beautiful spirit and courage beyond words. The cc fight makes friends our of strangers, and I my heart breaks for her family. My prayers are certainly with them.
Hi guys, I hear your stories and share your experiences, as this too was the first Father’s Day without my Dad, who we lost this past March. Thanks for the poem, the prayers and the stories of your Dads.
Our Dads will be loved forever, and they know it!
Hugs to all our Dads – may they feel them on the other side …
Tess
Dear Danielle, it broke my heart to read your post, and my heart goes out to you – at this very difficult time.
You’re in my prayers.
Tess
