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#51827 12-31-2006 02:50 PM
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aaloi Offline OP
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Hi Everyone,
Happy New Year! This time last year Bob and I along with 3 other couples were awaiting the arrival of a limo to take us out on a special New Year's Eve "night on the town" This year, Bob is in bed and I have many new friends from the OCF forum. My question for you is this: How much time should I plan to take off towards the end of his treatment. He is only 2 weeks into it . Chemo makes him tired about 36 hours after treatment. Radiation is not too bad yet. He is just beginning to get some soreness in his mouth. I know everyone is different, but I need to plan ahead. I am a teacher and need to prepare for when I'm off. I had planned on taking the last 2-3 weeks of his treatment off. My principal and co workers are wonderful and I have months of sick leave myself. I would like to know from those who have been through this, how much care and support will Bob need? He is being brave and says I don't need to be home with him, but I know otherwise.


Amy
CG to husband Bob, age 42. DX Dec. 1,2006, SCC base of tongue Stage IV spread to lymph nodes.Currently receiving Taxol and Carboplatin. Rad. Surgery for removal of lynph nodes scheduled for late March.
#51828 12-31-2006 05:52 PM
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Hi, aaloi- you've just asked a tough to answer question [teachers are supposed to do that-right?]
Because there are as many individual reactions to chemo and rad. as there are patients, it's hard to know. I would ask you these questions. #1. How far away are you from home when you are at school?
#2. What hours are you away from home? #3. Is Bob driving himself to rad treatments? #4. Can you arrange to work 1\2 days? #5. Do you need time away from work to recoup strength for yourself and manage your household? *I can only share our experience with you. John did NOT have chemo the 1st go-round. He did have 30 radiation tx. 1 a day. He drove 150 mi. down to Little Rock, spent 30 min. +- in tx. and drove 150 mi. back- 30 times. Some of those, I went with him and some trips he opted to do alone. But when he got home, he slept until the next time to get up and go again. After the tx was over, he slept almost continually for about 6 weeks. I was here and at the appropriate times during the day, I would wake him up to eat or drink. Every 4 hrs. or so. [which is why I asked how far away school is from home] While he was recovering from rad., the demanding parts of my day were being sure we had the proper meds and OTC stuff in the house and grocery shopping and cooking,trying to find foods John could swallow to augment his peg feedings.[and as most caregivers, taking over the household duties that used to be shared between us]. That being said, I still had time to help raise 2 grandkids and show up at our business. Truth be told, I really wanted to hover over John and HE really wanted to be left alone. My guess is you will have to make some judgement calls as you go along. But I will add that if you can gracefully take time off from teaching and use that time to keep yourself rested as well as help Bob, that could be a good thing. There are many caregivers here-myself included who will be glad to talk to you at any time. Chin Up! Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#51829 01-01-2007 05:53 AM
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It is such a very individual decision that it's hard to give a pat answer.

When my husband went through his initial treatment in 2002, he conveniently started near the end of the school year (I'm a school psychologist and work 193 days) and finished the week before school started in August. Wasn't that nice of him? smile But, he had more chemo through the fall, and I was able to work from home at that time on paperwork on the days when he seemed to be the shakiest. I also always when with him to doc appts. and took sick leave for that.

With the recurrence this past fall, I took family leave starting the week after Thanksgiving. He did need some assistance from me with driving, but the main support he needed was emotional. And, I needed to be with him more than I would have ever suspected. He's doing very well now as the side-effects from re-treatment were not nearly as severe as during the intial go-round. I intend on returning to work January 3 when school resumes.

That was our situation and some or none of that may apply to you. Just trust in the decision you make and know that some of what needs to be considered in this equation is what YOU need as far as rest and being in the vicinity of your loved one. I do not regret one iota being with my husband during this retreatment but am also ready to get back to work.

Good luck and hope the remainder of your husband's treatment goes smoothly.

Loretta


C/G to husband SCC of right tonsil, Dx 5/02. Tx concurrent rad with Taxol and Cisplatin. Consolidation therapy Cisplatin and 5-FU. Recurrence 9/06, neck dissection 10/06. Tx with twice daily radiation; two in-patient infusions of Cisplatin.
#51830 01-01-2007 07:47 AM
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Aaloi,

As Amy and Loretta have said, it's impossible to predict how your husband will react over the next several weeks. Some people have major adverse reactions by week 4 or so, while others have the worst effects after treatment has ended (and the rate of recovery also varies all over the place). I was able to work at least part time virtually all the way through radiation, and I drove myself to and from each treatment. Mostly what I needed from my husband was emotional support at the end of the day when he got home from work. I also kept doing my own grocery shopping, as I didn't have a tube and I was trying very hard to put together meals that would meet my calorie requirements and be easy to swallow (and my tolerance for certain kinds of foods varied quite a bit from one day to the next over the course of radiation).

I'd suggest that you try to have some contingency plans for when you might need time off, but let your colleagues know that the timing might be hard to plan until you have a better sense of how your husband is responding.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
#51831 01-01-2007 10:20 AM
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Aaloi,

My wife never had to take any days off. She did occassionaly have to come home and help me but I never needed her there full time. Knowing that she could come home if necessary was all the safety blanket I needed. Believe me there were those times that I needed her to come home but nothing that would have required her to take days off.


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.
#51832 01-01-2007 12:30 PM
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During most of my radaition and chemo, I mainly needed my husband's help getting to and from the radiation appts because I was often nauseated for one reason or another and then in the last three weeks also taking pain meds where driving really wasn't such a good idea (I felt like I could do it safely but if I had had an accident I might have been in trouble). My appts were in the morning and he is a college professor (as am I) but his classes weren't until the afternoon and evening so he would bring me home and then leave for work for often up to 9 hours away. His semester (conveniently) ended before my last week of treatment when I had no voice and was feeling really miserable and needed encouragement to get food down, etc.

I actually really felt like I needed someone full tiem that last week and then for a couple of weeks after when I was still really sick and had no voice.

But everyone is different so this is really a hard question to answer.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
#51833 01-01-2007 02:38 PM
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aaloi Offline OP
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Thank you for the advice. I don't teach far from home and the Central Md Onclogy center is only 3 miles from our house, so nothing is very far. We also have friends and family to help with the driving. I guess I really want to be with him more for me.
Amy Aloi


Amy
CG to husband Bob, age 42. DX Dec. 1,2006, SCC base of tongue Stage IV spread to lymph nodes.Currently receiving Taxol and Carboplatin. Rad. Surgery for removal of lynph nodes scheduled for late March.
#51834 01-01-2007 03:04 PM
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That's a good enough reason to stay home.


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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#51835 01-03-2007 07:40 AM
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My Wife was able to work from home three days a week which was nice, but the only real help I needed was driving to and from radiation. I did not drive until I was off my meds. I was able to feed (wonderful peg tube) myself, give my self meds etc. It is a matter for personal preference. I didn't want people around fussing over me. If I needed any help, I had plenty of people to call. Never called any one except for a ride to and from radiation. Did make two emergency trips to hospital, but both were in the middle of the night and were not life threatening. They did admit me however because I had a temp of 102. A lot depends on how he is responding. I would play it by ear and see how he handles the treatment and what he prefers.


SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
#51836 01-06-2007 12:37 PM
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i went through 35 treatments rad and chemo my wife was with me for every one of them she took the time off work to help me through it and im some happy she did after3wks of treatment iused to get in back seat of car and sleep all the way home found it very hard on me well now im 3 yrs out and doing great so far


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