| | 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 | Anne, please dont doubt yourself or put yourself down. A caregiver has a very difficult job trying to keep up with everything. Your husband is very fortunate to have you looking out for him. Im sorry to see he is now back in the hospital. At least he came home for a little bit. You are doing a great job. You were able to recognize that your husband needed more help than you could give him and made the call to the on-call oncologist. Dont call yourself a whiner or compare anything to me, Im just a medical enigma thats all  LOL Now is the point where we all wished we could have fast forwarded thru til a month post treatment. Im so sorry that your husband is struggling so much. Its a rough road but things will get better. Be strong, you are doing great!!!!
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 |
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 | At this point I would definitely consider the nasal tube WAY BEFORE a PEG. Also sounds like he is on way too much pain meds or the combo is wrong. Getting rid of the pain is one thing but making him that loopy is quite another. IMO
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Anne, I second Christine's assessment. You're in a very difficult place and, whether he's able to express it or not, I have no doubt that Gordon depends on you like no one else. Hang in there because things will improve eventually.
I have no experience with hallucinations. I can't imagine it's pleasant. My dad had them years ago after bypass surgery and saw little animals crawling all over the walls of his hospital room. Or maybe it was just a lousy hospital!
Not sure how I really made it through without the PEG. I know others have done so too. It was very tough, I can tell you that. If I had it to do over again I'd get the PEG for sure... although at the time I'd just had a possibly bad reaction to anesthesia during my neck dissection so I was wary of going under again. Oh well.
Davidcpa is, as usual, smart and informative on these issues. I may joke about my dad's visions, because we all need some lightness, but he may well be right about Gordon's meds. Worth asking about.
Hang in there, don't beat yourself up (sounds as if you did exactly the right thing calling the oncologist) and remember that your lifeline here is open at all times.
D2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | OP "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | Just to let you know that Gordon finished all the radiation and chemo. on Apr.
23 (same day my mom, age 91, was taken into emergency with a partial intestinal obstruction, but that's another story...)
The loopiness pretty much stopped when the doctors got him off the morphine/hydromorphone (the nurse and I got to watch him doing his "air guitar" routine when he was really out of it - something no other person has ever witnessed, apparently). He's been on oxycodone and still on the fentanyl patch (75 mcg). The oxy. makes him groggy, drowsy and a little confused, but at least he's not seeing things. Pain control isn't great, but he's getting by. The next step would be methadone, which he doesn't want to take. The 2 weeks after treatment have been hell. I think he feels worse this week than last week. They keep telling us it's going to get better, but when? We both long for relief.
Anne
Last edited by Elianne; 05-07-2010 10:31 PM.
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | I remember those two weeks vividly. I guess its like stopping a train or turning a ship at sea. The effects of the radiation have a certain amount of momentum and don�t start to diminish for a few weeks. I too felt those two weeks where the worst. Painkillers sleep and liquid food; that was my existence.
The good news is that your two weeks are over and you should notice a gradual change. Mind you, its not much at first, but it should get better soon.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | OP "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | Thanks for the encouragement Kelly.
Gordon is fed up, discouraged, depressed, constipated and thinks he's never going to feel better. I have to admit I'm wondering myself. On top of that he's frightened that after all this, the treatment won't have worked and then what? He's in a slump and feels terrible. If he could just see a little bit of improvement it would really help.
Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I sure remember the pink elephants I saw outside my Hospital room and so do my kids and grandkids. Supposedly there was a large hill outside my window that the elephants roamed on. I guess I really did act and see weird things. Elianne You have one tough job to do for your hubby and I admire you very much.
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 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Anne,
I remember that my husband felt the same way upon completion, too. It was so tough seeing him in a deep funk. I really needed a break, even for an hour where I could just get away. I always returned feeling more fortified and more able to deal with his discomfort. The pain meds are a double-edged sword--the side effects are so uncomfortable. I would say to Clark that the good news was that he never had to repeat this day, that tomorrow would be different, and each day he was closer to being well again. We used to go out for a drive just to get him outside a little, change the scenery. That seemed to brighten him a little. Then when we got back home he would conk out for a few hours. You have one of the hardest jobs right now. It is heart breaking to see our loved one this low. Keep posting to help lighten your load.
All my best--
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: Mar 2010 Posts: 126 "OCF Canuck" Senior Member (100+ posts) | | OP "OCF Canuck" Senior Member (100+ posts)
Joined: Mar 2010 Posts: 126 | Thanks Anita. It's so hard for them and you feel like you're sinking into their pit of misery, which doesn't help anyone. You are right - it's necessary to take a break to get your own head straightened around. Luckily we live by a very nice seawall walk and we can get out every day, as it's at our back door. Also, important to get out with a friend and talk about something else for an hour once and awhile. This is a tough job, the toughest I've ever had. It changes you and your partner, and things will never be the same again. But I think you still have a choice about which direction your life will take after it's all over. Maybe appreciate a lot of thing you used to take for granted. Anne
Anne - CG to Gordon (59), non-smoker/non-drinker. SCC, BOT, HPV 16+, stage 3. Jan./10 - radical neck dissection to remove 48 lymph nodes, 1 node pos. Apr. 23/10 - finished 35 rad. and 3 cisplatin. Jul. 22/10 - PET scan clear.
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