| Joined: Mar 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2013 Posts: 40 | I went with my Dad for his chemo session today, but he was unable to have it. White blood cell count was too low, plus he was dehydrated. So, far his weight isn't a concern, but I think he's putting all his effort into trying to drink the Ensure drinks, that he isn't drinking hardly any water. Instead, he just got fluids today to hydrate him and has to go in every day next week for fluids. They gave him a shot today to improve his white blood cells and hopefully, he can get his chemo again next week.
I just look at him and feel so sorry for him. He doesn't smile or joke around anymore....heck, he can barely talk. He kind of has this "daze." I believe I've read where people have referred to a "chemo fog" and I'm guessing that's what he is in. I'm trying to focus on the fact that April 25th is the last day, then we can start the healing process....although, I hear that doesn't exactly start right away, since the radiation keeps working.
Anyways, just needed to vent on here. I look at him and have to try really hard not to cry. He's never been sick or in the hospital at any time in his life, so this is just such a 180 for us all.
I keep trying to think about things to look forward to. My daughter will turn 4 in May....maybe he'll be feeling a bit better by then. My birthday is in June....hopefully, he'll feel alot better by then. Just trying to look to the future. I know God is with us and will get my Dad and all of us through this.
Brandi, daughter of: Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+ 1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!! 2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total) 4/25/2013: Will be last day of TX, both chemo and RT | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Brandi, things will get better. Treatments are BRUTAL!!!! Seems to me like the docs take a patient close to death to kill the darn cancer. I know I sure felt like that anyway.
Ask the doc for a prescription to get your dad hydrated a few times per week in the chemo lab. He will feel better with proper hydration. Some patients go 3 times per week to help them get enough fluids.
Its ok to feel all kinds of mixed emotions about this. Being a caregiver is difficult! Speaking from the patients point of view, caregivers have it harder. They have all the responsibility on their shoulders and need to be cheerful on top of it meanwhile they must advocate constantly for their patient. NOT easy!!!
Hang in there, we do understand. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Hi Brandi. So sorry that you are going through this. I remember when my husband was in the middle of treatments and he just "looked" so thin, pale, sad and sick. He had never been sick a day in his life. It's so hard to watch someone you love so much suffer. Does your dad have a PEG tube? Staying hydrated and nourished is part of the treatment plan. Some days when John was doing treatments it felt like it was an all day event just trying to get liquids and nourishment in him. We do understand what you are going through. Best wishes. Wanda
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Brandi, it is hard, I know, to watch a loved one turning into a shadow of his former self and to know that we, as caregivers, have already done everything we can to help. The day I heard that the MO wasn't going to give my husband his third chemo session because he had developed deep vein thrombosis and that his blood counts were all too low anyway, I sat in the waiting room and cried. It felt like I had failed him in some way, when intellectually I knew that it had nothing to do with whether I had put in enough effort. It was probably the worst moment in all of the seven weeks. Then I picked myself up and got back to the care-giving. It is truly like a roller-coaster ride.
Don't forget to look after yourself as you go through the journey with your dad. Exercise -- maybe a bit of walking everyday -- eat and make sure you get adequate sleep. Being physically well with help you deal with the emotional upheaval.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Mar 2013 Posts: 23 Member | Member Joined: Mar 2013 Posts: 23 | Hi Brandy, I have tears in my eyes reading your post and the responses. I too, am a caregiver to my husband and he has just begun his TX. He ended his first wk of RT today and 2nd cysplatin on Thursday. He's okay this week and still eating solid food. I'm dreading what is to come, but trying to focus on one day at a time. If it helps at all, I've recorded some uplifting 1/2hr comedy shows, something to make me (and my husband) laugh to take my (our) mind off things for a while. I also get on the phone and call friends who I know will pep me up and keep me going. I keep hearing that there is a light at the end of the tunnel and there is. Sometimes things have to get worse before they get better. I will keep you and your dad and all on this site in my prayers. Blessings, Pamela
Pamela (57) Caregiver to husband Jack (68) 2-21-13 DX BOT SCC T2, left LN's affected, Stage 4, HPV+ 3-8-13 PEG, Port for Chemo, Biopsy BOT 3-22-13 Start Cisplatin 1X Wk X 5-6 Wks, 3-25-13 Start Rad 1X Daily, 6X Wk, X 7 weeks, (42 TX) 5-11-13 finished Rad after 39 TX and 6 Wks Cisplatin
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Watching someone you love suffer, and not being able to help is brutal - I have been there far too many times recently. Just keep telling him you love him and would do what you can to help. Take club soda and flatten it and leave it at room temperature. He can rinse his mouth with it and swallow it it will hep heal and also hydrate. Hugs...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Oh Brandi - I can so feel the pain and the sadness in your post. . . it's been a long time since my son was at that same point in his recovery. There were times when I felt so helpless when he just sat at the edge of his couch with his head in his hands, looking like he was ready to just give up. He couldn't speak above a whisper and I felt like I couldn't find the right words to comfort him. I had to ask if I could kiss his forehead because it seems like everything hurt him. I would touch him gently on his hands or a "safe spot" on his shoulder, sitting next to him, telling him I loved him and that we would both get through this somehow. The only time he would brighten up was when his 5-year old daughter came to visit and she made him smile. It does help to have things to look forward to (as you mentioned) both for you and for your Dad. Does he see your daughter sometimes? Do you think it would help for her to visit? He might have to put on a smile or "fake it" for her but sometimes it does work to "fake it until you make it". One big thing to remember is that it really does get better. And it helps to vent or write things down. So come here often and let us know how you are both doing.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Mar 2013 Posts: 40 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Mar 2013 Posts: 40 | Thank you all for your comforting words. Anne-Marie--I do have a 3 year old daughter and my Dad sees her often, several times a week. I know he loves her more than anything and she is definitely one of the reasons he is fighting. Since I wrote this, my Dad improved. He didn't have his chemo Thursday, he didn't have radiation Friday because they closed early. Then today and yesterday, the radiation machine has been down so he didn't get his treatment! I know this all needs to be done, ASAP, but I then this little break has been good for him. He has been able to get some Boost high calorie shakes down and is continuing to get fluids through an IV. Hopefully, the machine will be fixed and we can resume treatments and plow through the rest of this month. Them, we'll be done.
Only a specific part of the population (us) understands that radiation treatment to the mouth is a whole different ball game than other radiation. Not being able to eat is just awful. Thank you all for your sweet responses. I know I can always come here to have people who understand.
Brandi, daughter of: Jack, age 69, non-smoker, BOT primary, Stage 4, HPV+ 1/28/2013: Surgery. All cancerous masses removed. Dad is CANCER FREE!!! 2/26/2012: Beginning of TX. Weekly chemo: Carboplatin and Taxol. Daily RT (about 40 total) 4/25/2013: Will be last day of TX, both chemo and RT | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Thanks for the update, Brandi and that your Dad had a little improvement. My son also had a couple of breaks during his Tx and I was concerned about that, but we trusted his doctors and he did fine. Rad Tx is a rough road to be on and sometimes it's hard to see the light at the end of the tunnel, but it's there. How nice that your three year old daughter is able to be such a joy and comfort to your Dad! Children really are a blessing!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Apr 2013 Posts: 19 Member | Member Joined: Apr 2013 Posts: 19 | brandi, it breaks my heart to read your post. I'm so sorry your dad is going thru this. it is never easy but you will both get thru this. Thank God for your daughter who gives your dad an extra reason to fight this nasty beast. its good that he has something to look forward to. I will keep u, ur dad and your family in my prayers. hang in there, it will get better. God bless, debbiejeanne
laryngeal cancer in 8/09. 35 rad tremnts no surgery. Recurrence in 2/12. Complete laryngectomy. 10/12 pet scan, clean ned.
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