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Reminded Rod yesterday I was going back to work next week. He begged me to take another week off. I have just been off for 4 weeks, have used all sick leave & only have 5 days annual leave up my sleeve. Talk about a catch 22....the nurse yesterday said I need to go back for ME, even if only gradual & that Rod needed to become a little more independant. She told him with his meds decreasing, he needed to work his 'ass' off in the eating department which would contribute with his treatment recovery. She asked him why he wanted me home another week, he said he didn't know. After she had gone he said he felt like she had put him on the spot. I asked him why he so badly needed me to stay home next week, he said he just wanted me here. Work have agreed to me working from 9am to 1pm next week, then back to full time after that but boy, I felt a little emotionally blackmailed by Rod, not quite a win win for me, but is this dependancy natural? I'm guessing it is.....we need to now get some 'normal' back....

J


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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I agree with you and the nurse. He should be out of the tunnel by now and at 53 I think (hope) he's capable of caring for himself which at this point is really just about nothing. Time for him to stop the pity party and everyone needs to reclaim their lives back. I think you need to just tell him you're going back FT next week period, end of story.


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.
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OOh David thats harsh .Treatment finished 28th July thats less than 4 weeks ago.Rob had only just emerged from his sleep cocoon after 4 weeks and sure as hell wasn't ready to go it alone.


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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I just think its hard to let go of the emotional connection that develops between the patient and the care-giver. My mom was my care-giver and we got to the point of finishing each other's sentences after 12 weeks of being together day in and day out. When she had to return to work, it was hard for both of us. I was fully capable of caring for myself, that wasn't the issue, but it was hard to unravel the closeness we'd developed and move forward separately.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
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Jeanna, best of luck with returning to work. Its going to make you feel so much better getting out among people.

Your husband may be weak but by the time you hit full time he should be ok. I was in bad shape for about a month after tx finished then slowly started to recover. Your idea of part time next week sounds like a good plan.





Christine
SCC 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 smile
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I agree with the nurse as well. I was lucky enough that i could log on at home and work from home a few days a week, but after weeks I was back in the office most days.
I would come back some nights at 6.30 pm having been away from home since 8.30 am and he hadn't woken up or eaten or left the bed. I had to be hard, tell him off and force feed him. I started calling him from work every 2 hours just to make sure he was awake and eating. It worked.
He needs to stop relying on you. You will be there for him when you come back from work, and he can always call you. You will feel terribly guilty, but you are being cruel to be kind. You don't want him to be stuck in a "oh poor me I am so helpless" phase. Part time as a start sounds excellent. He can get used to being not there. Plus as Christine said it will give you a boost being out there in the outside world.
Good luck


Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
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Thanks guys for your support, I posted this last night, and with no responses within an hour I thought ooooh, they must all think I'm a cow!! I've felt between a rock & a hard place, and think he is angry with me for going back at all [don't think work is happy about it all but they've accepted it]. My folks were here yesterday and commented on how good he looks and that he seemed very much better than 2 weeks ago. David you have a good point, and he IS capable of making eggs, soup etc, but my fear is he won't. He is in so much of a hurry to go back to work himself, I said this morning that it won't happen unless he eats. I commented to the nurse that I think he thinks he is invincible, she agreed with me to let him 'go for it & learn the hard way', I just have to be prepared for any of his whims that fail to come back on me...I'm sure they will!! Yep, tough love. Hope it works - the thought is hard though as I'm not in his shoes, but nor is he in mine.....At least I can log on to my work emails & clean out my inbox from home!


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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Sorry but i still think barely 4 weeks post tx is a bit too early for tough love and trust me i wrote the book on tough love.

Last edited by Cookey; 08-20-2009 10:35 PM.

Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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I agree Liz. Rod has been through one hell of an ordeal so I understand how he would be feeling a bit stressed about Jeanna going back to work. And Jeanna I feel for you. You would be feeling pulled in 2 directions at the moment. If your anything like I was when I was working I was useless. My thoughts were with Steve and I felt pulled in 2. Luckily I work for a very good company who gave me a 6 month career break with an option for a further 6 months if needed. No pay but I have my job to go back to when the time comes. Helps to know there's some security in our future.


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.
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Stuck between a rock & a hard place. Wish this nightmare was over, or better still had never begun. Wish I could stop my eyes welling up with tears. Wish, wish, wish.......


Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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