| Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Well,I am in the hospital again. This time for throwing up blood. It was also coming out my PEG tube. I am having a scope done this afternoon to find the source of the bleeding. I also have to have a blood transfusion, because my blood count is only 9.1. I guess I really do go to the extreme on everything, don't I. MY RO thinks it may be an ulcer in my stomach. I will let you know what is going on as soon as I can. I have been here since last night. I am heavily medicated.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Angelia,
I'm sorry to hear you are back in the hospital. That had to have been very scary for you. I hope everything goes well and you are back home soon.
Anita
Anita (68) CG to husband, Clark, 79, DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08, HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft. Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear, PEG out 1/11. 6/11 non union jaw fracture Fractured jaw w/surgery 7/14 Aspiration pneumonia 7/21, 10/22 PEG 7/21 Botox injections
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | Gosh Angelia,
Sorry to hear of the troubles. You need a good shortcut! Will be thinking of you.
Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Man you do try and max out everything, don't you!
We're all in your corner 24/7 so keep us posted.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Keep your chin up Angelia.
I had several episodes during treatment similar to this only the blood came from the cancerous ulcer in my mouth. A week after my second round of chemo landed me in the hospital for a week with really low blood counts. After several transfusions I got to go home.
Keep your attitude up, you'll get through this.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | 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 | Angelia, sure hope you get back on track soon. Im so sorry you are having so many problems. Feel better soon!!!! 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: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Angelia, sorry to hear about more problems. Hope this doesn't delay your tx. You're almost there.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Angelia. you remind me so much of Christine and me. LOL I sure am sorry to hear you are there agin but this for good reason .Hopefully this will be end of the Hospital for a long while so you can rest and recover some..The best of everything to you..
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | Angelia - So sorry! I hope you get back on track asap.
((((hugs))))
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Dang woman!! This has been so difficult and we have all been counting down the days with you - now this. Get back home as soon as you feel better, but allow your body the time to recover it needs.
Sending prayers and good thoughts your way.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Angelia you are certainly travelling a bumpy road. Your strength is a true inspiration. Take care and hope you are feeling better soon.
Wendy
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | My Primay Dr. for this hopsital came to see me this morning. I have to have more blood transfusions. My stomach looked good. It is my esophagus that caused all the bleeding. My husband told me last night that they are going to have to watch real close because it is really bad and I may be here for the duration. Hopefully they can get my blood counts up. I still had treatment yesterday and will bave it today, but later in the day after I get more blood. This has all been kind of scary for me. As I have never been in the hopsital for any length of time except to have my boys. When my RO saw me yesterday he did not waste time in telling us seriousness of low blood counts and radiation. I am just glad I drove the hour Wed. evening to the hopsital where I am being treated at. I really do miss my kids. We had to leave Wed. evening after they were asleep, so they had no idea mommy and daddy were gone. I will get to see them tonight for a few hours. I do really enjoy the pampering, if you will, I get here at the hospital. I sure was not taken care of like this at home.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Oct 2007 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2007 Posts: 104 | My goodness Angelia, if it's not one thing it's three for you isn't it. Sorry to hear of your difficulties through this treatment process. Hang tough and keep fighting and do absorb all the pampering the hospital staff are providing. Hope you will soon be on the mend and back home with your family.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Angelia: Just want you to know I, too, am thinking of you and sending my prayers for you to get over this latest set-back, and successfully finish your treatments. All your posts show your amazing fighting spirit, so I know you can do it. Enjoy the pampering, while you can. julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I did have treatment today and am now getting my second blood transfusion. the best part is that I only have 11 treatments left.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | Wow Angelia - tough way to get some "pampering". So sorry that you are having all these additional issues. As hard as it is being in the hospital, it will force you to focus on you and your treatments and recovery. I will keep you in my prayers and hope that things get better soon. How many more treatments do you have? Sending you a BIG HUG!
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: Aug 2005 Posts: 307 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Aug 2005 Posts: 307 | You poor thing, I feel so bad you are having to go through all of this. Saying my prayers that all will be well. You are one tough lady, hang in there. Just remember, you're that much closer to being done.
Big Hugs,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2009 Posts: 212 | Hi Angelia, Tough way to get pampered, I think you will need a trip to a spa in a couple of months! Hope you get to go home soon, thinking of you
Steve
70 male, athlete...again SSC of undetermined orgin , early july 09 40 tx radiation, 8 chemo cisplatin and ebuterx finished TX in mid Sept 09 Clear at the 6 year mark! Back to swimming, biking and running! just a tad slower never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | Joined: Mar 2009 Posts: 147 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2009 Posts: 147 | When I think of you I think of that Donna Summers song from the late 70's "I will survive". Just keep going...one step at a time and you'll get through this crap.
DX 2/10/09; Stage 1 SCC side of tongue; Partial Gloss; PEG in 3/3/09; 3 Cisplatin; 35 IMRT; PEG out 7/17/09; Eating via mouth and walking 3 miles/day 4 wks after treatment end. 50 pound weight loss; Clear PET 09/09 and 09/10 | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Angelia,,watch that esophagus close. My cardiologist ignored my pains and kept feeding me aspirin and heart drugs. Then I got scoped by a new Gatrointologist in the area and he threw all of the heart meds away and sent me to Pittsburgh for a test where they put tubes thru your nose to the stomache while you are hooked to a machine you take home with you for 24 hrs, The next day when they took it off, my acid was off the chart.My esophagus looked like raw uncerated liver they told me. Right after I had to have surgery for it where they wrap 1/3 of your stomache around it.. Just be careful of acids even some fruit and a lot of foods. I hated to hear this with all the problems you have already. Maybe a scope some day for you ?? Get well and I'll pray for you.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Let them take care of you for awhile and lets get everything under control. I remember one time having to be carted in on a gurney to get a rad Tx. Man they just didn't want me to have a break.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Thinking of you and hoping that you're feeling and doing better tonight.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I have been carted on a gourney for two days. Get this, My GI DR. came in today and said we are going have to watch it closely and get reflux undercontrol. I also came in here to help with nutritonal needs, and I have only been given an ounce an hour since last night. I "eat" more at home than the Dr. would allow me here. They did finally increase the amount, I am being fed my a pump. Well, the PCP physician came in tonight and told me that if my hemoglobin and hematocrit comes back okay tomorrow I could go home. I was like yeah right. I do not think I am physically ready to go home. My pain is undercontrol here and I am really concerned about this esophagus issue. When he comes back in the morning the nurse is going to talk with him and tell him that we are not ready go yet because of the dehydration, esophogas, and other stuff. I will be here until at least Tuesday if we have our way.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Take your time Angelia,
Personally I hate hospital stays...but that's just me. Get well girl and keep the spirits up.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Unfortunately, this hospital stay has been kind of like a break for me. When I get back home I will just have to start taking care of everyone else. Mommy desn't get to just take of her. If you know what I mean? I can feel my throat swelling again which is what brought me here in the first place, we just happen to find other problem while we were here.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Feel better and milk the hospital stay. It's the best thing for you right now.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Nov 2009 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 92 | Angelia,
Sorry/glad you're in the hospital (sorry you had to go - glad you're surrounded by pros). Like many others, I hoping things ease up for you. In the meantime, let the servants - I mean hospital staff- take care of you. - Pam
44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Let me tell you, this is the absolute best hospital stay I have ever had. as soon as I push the nurses button they are in my room.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Are they cute?? Just asking...
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | 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 | Angelia
This is exactly what I was worried about...you didnt have the help you needed at home. I know you told me you had lots of help available. Did you ever make a list of the people who would help you? Im sure hoping that those helpers didnt disappear like some of mine did.
I was a single mom and had NOBODY!!!! My kids thankfully were teenagers but they still needed a mom to take care of them. Everything fell onto my 17 year old son, he drove me the 45 minutes each way for radiation every day. He also went to the grocery store and pharmacy. I had nobody to cook or clean. There wasnt anyone to see if I took my meds or if I ate or drank that day. I was in the same situation as you. Makes me feel so bad for you!!!!
I dont want you to get upset with me so Im sorry for asking. What does your husband do to help you? How about taking care of the kids? Can you get your church friends to each take a day of the week to come over for a couple hours? Please open up and ask them to help you at home!!!! Its so sad that it takes being in the hospital to make you feel pampered. Wish I was local, I would help you and give you a big hug!!!!! 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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Angelia
I'm so glad that your hospital stay is so different than my hospital experience. I still shudder when I think how terrible it was. Of course I was spoiled with a world class caregiver wife. Maybe those early feminist comedians had it right when they said "Every Woman needs a wife" when I tried to google for the comedian, instead it turns out there is book by the same title for sale on Amazon with a wild plot. I am excerpting it here in the hope that it brings you a smile: [quote]Every Woman Needs a Wife, is a hilarious, but heartwarming tale of a wife who does the "unthinkable." Strolling in on her husband and his mistress one night, she insists that the new woman in his life come home and earn her keep the honest way-on her feet helping the wife, instead of on her back servicing Vernon. When the mistress shows up during their surprise anniversary party to take the wife up on the offer, Brandi seizes the opportunity to teach Vernon that infidelity will no longer come at the expense of the wife's time, money, and happiness. The husband fights back by launching a high-profile court battle that doesn't have a thing to do with splitting the money, keeping the house, or visits with the children. Had any married couple ever fought for custody of . . . the mistress?[/quote] Charm 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | [quote=ChristineB]Angelia
This is exactly what I was worried about...you didnt have the help you needed at home. I know you told me you had lots of help available. Did you ever make a list of the people who would help you? Im sure hoping that those helpers didnt disappear like some of mine did.
I was a single mom and had NOBODY!!!! My kids thankfully were teenagers but they still needed a mom to take care of them. Everything fell onto my 17 year old son, he drove me the 45 minutes each way for radiation every day. He also went to the grocery store and pharmacy. I had nobody to cook or clean. There wasnt anyone to see if I took my meds or if I ate or drank that day. I was in the same situation as you. Makes me feel so bad for you!!!!
I dont want you to get upset with me so Im sorry for asking. What does your husband do to help you? How about taking care of the kids? Can you get your church friends to each take a day of the week to come over for a couple hours? Please open up and ask them to help you at home!!!! Its so sad that it takes being in the hospital to make you feel pampered. Wish I was local, I would help you and give you a big hug!!!!! [/quote]
I second what Christine is saying and was keeping my mouth shut since I had already said this to you in a earlier post. But the more I think about it, I think this is about your life! It is so important for you to stress this to your family. Really, it will make all the difference. Christine and I see this from both sides...I know how much Bill needed me and she knows how much she needed help!
Deb
Last edited by debandbill; 01-16-2010 05:29 PM.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Angelia, I hope they let you stay there until you think you are ready to go home and be comfortable. You know what you feel like and I sure am glad the nurse is on your side. I was sent home one time and felt lousy. I ended up going back in the E Squad, Tomorrow in church You will get extra prayers from the congrgation for sure.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | OP Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Thanks all. I think my problem is that I did not want to ask for help. I see the error of m ways now. But what landed me in the hospital was the bleeding I was having and the low blood counts. When I do go back home I will make sure I have some one to help everyday.
Angelia 31 at Dx. DX: 4/30/09, 10/21/09 SCC on floor of mouth, T1NOMO, T2N1M0 TX: 39 IMRT, 8 cisplatin 11/30/09 PET/CT: 11/03/09: Lymph node involvement PEG/PORT: 11/09 TX end: 02/01/10 PET Scan: 04/05/10 clear PEG Out: 06/21/10 Biopsy: 12/23/10: fibrosis HBO: 01/04/11 - ORN Baby girl born 11-30-12
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | Charm - I never heard of that book. Wonder if it's as funny as it sounds.
Angelia - I hope that while you're resting, you're gathering your strength. Just 11 (or is it 10?) more to go!!!
(((Marlene)))
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 216 | Angelia..I just saw the post on FB and came here to see what was up. So sorry you're in the hospital but milk it for all it's worth..you need the rest and I gotta agree with Christine and Deb, get some help in when you go home. (pet peeve of mine, everyone wants to help and no one shows up without you going out of your way to ask! makes me wanna say "just show up, there's always something to be done!") Big hug...thinking of you and praying for your speedy recovery too!
Cheryl
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | angelia, if u are wanting to stay in the hospital for rest purposes, then u are definately not getting enough help or rest at home. in order to fight this beast, u have to have rest. that means u need HELP. if u dont want to ask for help, tell ur husband to ask. there is no shame in asking for help. you are fighting for ur life for God sake. u need rest.
i feel for u with having the two little ones. it must be so tough. but ur hubby is just going to have to step up.
im sorry if i overstepped my bounderies. but this upsets me. so i am not going to say that i am sorry your in the hospital because i think it is just what u needed. i am sorry u are having complications again though.
10 more and ur done!!! then on to recovery!! sending prayers and hugs ur way!
Teresa ----------- CG to ANDY. Nasopharyngeal Carcinoma (NPC) T2N2cMxG4 stage 4. 43 @ dx 8/31/09 tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3 PORT 9/9/09, PEG 12/07/09 35 IMRT-1/wk carbo 11/30/09-2/3/10 tx stopped due to complications IMRT BOOST 3/08-3/12/10 PET 4/12/10 CLEAR! PEG out 4/14/10
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Angelia- Hoping that you are getting rest and gathering your strength back. Get well soon and take care.
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | With no kids at home and capable people managing my businesses and my wife and Office Manager and friends and neighbors to help and all I had to do was go through my Tx it was the toughest thing I ever did so I can't even begin to imagine having to worry about taking care of other people during this. Stay where you are if that's what it takes!!
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: May 2007 Posts: 132 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: May 2007 Posts: 132 | Hi Angelia,
I'm just playing catchup and and saw that you were in hospital. So sorry that you have had such massive problems with bleeding and your treatment.
I think that it is difficult being a Mum and sitting back and letting others take 'control' but I spent 3 weeks in hospital while I had treatment this time around and was really incapable of doing anything when I came home. My family has survived and they are developing skills and a new awareness of what needs to be done around the place. I don't even have to nag anymore. Learn to step back and ask for help - the outcome will be worth it.
I hope that you are close to finishing treatment - and if you are don't be disappointed when you feel worse for the first week or two.
Good luck for the next few weeks and don't forget that this is a time to put yourself first!!
(((Sue)))
55 y/o SCC LL Tongue 3/27/07 Part. mandibulectomy 9/2/07 Left ND 5/12/08 RT/Chemo Rec LL Tongue 07/09 Part gloss 8/5 & 8/25 Surg 10/28/09 re mets to R neck & L jaw RT & Chemo finished 12/22/09 PEG fitted 05/06/10 L buccal SCC 10/10 freeflap (forearm)surgery 2/28/11 L buccal and gingiva
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