#50806 07-08-2004 01:37 PM | Joined: Jun 2004 Posts: 26 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2004 Posts: 26 | For all my dear new friends ... What a day !! But a day that will go in my journal, and definately a day that brought a special bond with my sister. We have all lived in different parts of the country since adults, so although always in touch, not close physically for the things I have with my own family (husband and children.) Today, the emotional and physical caring that she accepted from me was a pleasure and a treasure for my memory.
Today was radiation and her 2nd of 3 rounds of chemo. It was an all day event. We had some challenges with her "port" ... burning sensation both treatments of chemo, this time worse, so they were worried about leakage, and when it was done and they took everything out, she bled profusely. So they rushed us to xray but found that there was no leakage.
The nurses were very short staffed today so things weren't as organized as had been for her last chemo. So, without asking I stepped into the nurses station found out where the warmed blankets were, and brought them to her and kept her covered and kept getting the blankets rewarmed. She loved that. "THank you, Thank you, Thank you so much." Then I kept refilling her water, keeping her protein drink filled, and telling the nurses what she needed. I stepped out every couple of hours at her insistence and roamed and walked and read and each time I returned to the Infusion Suite, she was thrilled to see me. When all was said and done, we went to the surgeons office for her check up appt. He debrided some of her arm scaring (which both of us had to close our eyes to ...), the doctor told her she looked good and to our (the doctor and my) surprise she looked at him and said "You look good too !" He laughed and said "I can see your mood is lifted, and I can't tell you how important it is that you have your family with you." By the end of the day she didn't mind or resist any of my help and my questions to the doctors and nurses. She even let me put her shoes on her and help with her dressing !!
She wanted to get her favorite fajata's at Chili's Restaurant, and work on swallowing, so we stopped on the 40 minute ride home ... we sat in the restaurant (I was so worried she would get sick, but I didn't say anything) ... she wanted to be there and she wanted to eat. She insisted on sitting on the same side of the booth with me, and put her head on my shoulder and said to me "I'm just so happy you are here, my day was so much better wtih you here." This just meant the world to me.
She laughed on the way home, and again, she made me drive, and put the music on loud.
I don't take this as a down note, but she did put in a Tom Petty CD on the way home and quietly told me "when I die, I want this song (Room at the Top) to be played at my funeral." When I listened to the words I started to choke up, she was going to turn it off, and I told her "let me listen." Then she went into further detail about the funeral she would want. I just listened. Then I told her the same about me, what I would want ... It was strange but at the same time, she needed to talk to me about this.
What a day ... she was so happy, so at ease and so okay by the time we got home.
Wasn't sick when we left chemo ... so I will wait to see what happens tonight.
It was a hard day, and at the same time ... a very special and peaceful day for us.
My love to you all. I hope your days were also blessed and at peace. Betty
Caregiver to Sister, Woodstock, VT - 3/4 tongue removed & reconstructed w/forearm 5/21/04, some in the lymph nodes, neck dissection, brachy radiation in the hospital and now going through 2nd round radiation and to add cysplatin chemo. Stage II-III.
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#50807 07-09-2004 03:21 AM | Anonymous Unregistered | Anonymous Unregistered | Betty,
What a beautiful day for you. You did so many special little touches, that I know mean a lot to a person undergoing treatment. Listening to your sister's wishes is so very important. So often families try to change the subject or joke their way out of listening to things like funeral wishes. But, they become every important to many of us. As you know, there will be worse days, but I bet you'll go a long way to find a better day.
Good for you and your sister. Take care, Dinah | | |
#50808 07-09-2004 09:46 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi Betty, Thanks for sharing such a special day with us, we all hide our innermost thoughts, but when they are shared they are very precious indeed.. Sunshine... love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#50809 07-09-2004 09:46 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 |
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#50810 07-10-2004 05:17 AM | Joined: Mar 2003 Posts: 62 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Mar 2003 Posts: 62 | Hi Betty, You are the true meaning of a Sister. Your day made me smile and tear up at the same time. Thank You for sharing. David | | |
#50811 07-11-2004 09:09 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | Betty -- thanks for letting us in on such tender and special moments... blessings to you both...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#50812 07-12-2004 01:17 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Betty, Thank you so much for sharing. The bond you are developing with your sister sounds so much like the one I shared with my daughter Heather. It is both an awe-inspiring and heart-wrenching experience to help a loved one during their battle with cancer. Your sister is very lucky to have you and it sounds like you are doing everything right. Discussing funeral plans is surely one of the hardest things one must do and it sounds like you handled it superbly. (I hope you don't have to use them for many, many years.) I can tell you are going to be a source of inspiration for people on this forum. Welcome and thank you! Rainbows & hugs, Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#50813 07-15-2004 04:30 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Apr 2004 Posts: 44 | Betty- I started bawling when I read your message. I'm sure all us caregivers (especially) understand the melancholy feelings. My guy was too beaten from his treatment to even know what was going on but he knew no matter what, I'd be there (good, bad or ugly). My heart sings with joy that you have the blessing of being a part of nurturing your sister and it weeps that circumstances are such... All the memories of my Uptown's (Ed's) days in infusion came flooding back. He was so worn out and God blessed me with Ed's trust and the engergy to keep the warm blankets, soft drinks, soups, emesis basins coming. His radiation was every weekday morning and during the entire treatment he never stopped throwing up... Argh. I wish I could hug you (as much for you as the selfish me). Cancer has such a way of stripping all the "pretty" faces we tend to hide behind and exposing the really beautiful things - love and humble appreciation. God's blessings to you AND your sister. Susan
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#50814 07-24-2004 10:34 AM | Joined: Jul 2004 Posts: 28 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2004 Posts: 28 | Betty, caretaking must be the absolutely most devistating of this disease. I don't know how you can withstand it. Those of us who've been striken with the BIG C, are so very fortunate to have you.
God bless and keep you strong. Sandy | | |
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