| Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2014 Posts: 86 | I feel so sad and guilty for my little brother. He's our little baby he's only 22 years old. I am 26 years old if anyone was wondering. I feel guilty that I ate food in front of him today. He can barley eat and when he did eat I asked "is everything ok how do you feel" and he got upset "I can barley eat and when I do eat it hurts." I feel so bad and I don't know what to do.
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue CT scan clear LN 6/20/14 HPV-, non-smoker R tongue, right hemiglossectomy Surgery 6/24/14 (Not reoccurrence but went to NCCC instead R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14 PT1N2B.3 positive lymph nodes out of 13 Extranodal extension present 9-15-14 IMRT (35x) & Cisplatin (2x) begun 10-21-14 peg in. 10-31-14 1 round of carboplatin 11-4-14 IMRT rx comp 3-27-15 Recurrent tumor in lymph node, L neck diss. 10-29-15 brother passed away, 23 yrs old
| | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | There's nothing wrong with the feelings you are experiencing. This is a horrific disease as a patient, loved one or caregiver. You show how much you love your brother by your words. I'm sorry you are seeing him suffer from the brutality of the treatment.
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | 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 | What you are doing is supporting your younger brother. Just being there and listening to him helps. Being a caregiver is not easy, you often will feel helpless and like you arent doing enough. Your brother is lucky to have you in his corner. 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: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | I'm sorry for you and everyone facing and dealing with this disease and its aftermath.
When my husband could not eat or had difficulty eating, I went through a spell - I would eat very little for days (due to guilt & zero appetite), then I would overeat for a day, and back and forth like this. Finally, I realized this would not make my husband happy and probably make me sick. I started walking regularly and that helped me. I was still very sad and anxious, but not so crazy.
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | Joined: Mar 2014 Posts: 25 Likes: 1 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2014 Posts: 25 Likes: 1 | My husband finished treatment about 5 weeks ago. I felt terribly guilty eating at first and found myself hiding in other rooms to eat when he couldn't see me. Sometimes I'd skip meals so that I wouldn't have to eat in front of him. In the long run I realized this wasn't going to work, and that he would not want me to get run down or sick because he was sick and could not eat. It's horrible having to see those we love suffer. It's also hard when they get upset and express their pain. However, it's good that he is expressing his pain, and just know that all you have to do is let him know you hear him and how much you care about him. He may find it hard to see you eat at times, but he also cares about you and wants you to be well in the long run. Most importantly, know that this will all pass. Take good care of yourself. He is lucky to have such an empathic and caring sister!
Spouse/caregiver to my husband: Age 48 @ diagnosis HPV+ SCC Stage IV diagnosed 1/14 Primary site unknown Met to neck lymph node; 2" tumor resected 2/13/14 Completed 7 Cisplatin weekly sessions and 35 daily IMRT sessions 5/6/14 PET scan clear 11/14 CT clear 10/15 CT clear 10/16 | | | | 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 | My husband is unable to swallow (not even his own saliva) because of the scarring in the esophagus. While I don't feel guilty about eating because like Randi, I know that I have to eat and keep myself in good health so that I can be the caregiver that John needs. I do, however, try not to cook food that used to be his favourites (like homemade bread, lobsters, food with lots of garlic, etc) and if I need a treat, like chocolates, I eat it in the kitchen while he is watching TV in the sitting room. From time to time, I will let him know that I am having steak (another one of his favourites)and it makes him happy to know that I am not depriving myself. So, it really is a matter of striking a balance.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Whatever works, DO it! I used to eat chocolate in the bathroom when my kids were little.
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: Oct 2012 Posts: 41 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2012 Posts: 41 | My husband has been on a peg for 2 yrs now. At first I would cook when he wasn't home or in the garage or outside. Overtime he got used to eat and he claims that it doesn't bother him anymore. You can always offer a little taste for his tongue if it bothers him when you cook. It will shake out over time and don't be afraid to talk about with him.
Caregiver to husband 53 SCC stage 3 soft palate 2011 Rad, recurrence tongue stage 4 2012 induction chemo, partial glossectomy surgery, cancer back left rad neck dissection 2013, more chemo, allergic to erbitux, cancer back 2014 floor of mouth and jaw, mandibulectomy scheduled 3/5/2014
| | |
Forums23 Topics18,168 Posts196,927 Members13,104 | Most Online458 Jan 16th, 2020 | | | |