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Don't we all Jeanna
I wish Rob had never got the disease,i wish he hadn't died at 44 years old,but he did,i wish i could turn my back on this disease and stop losing friends and family on theses boards and the english one but i cant and i wont.Tears are good and cathartic and trying to stop them does more harm than good so don't stress just let them fall,then wipe your nose fix a smile on your dial and carry on,just like we all do


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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From the patient's perspective, I walked out of my tunnel in my 3rd week post Tx and from that point on I was mainly weak but the serious stuff was pretty much gone like the nausea, dehydration, constipation and pain. Even when I was in the worst part of my Tx, my wife went to work everyday but was just a phone call away which I took advantage of many times. I still don't see any medical reason why Jeana HAS to be there especially if she doesn't really want to be there. Come on now were are talking about a grown adult who is certainly capable of taking naps by himself, opening a can of VHC every 2 hours and taking whatever pills he still does. Have you asked him what it is you are still needed for? JM2C's


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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I agree David i just think the "pity party" "tough love " comments were a bit early.


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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It's funny but the further away I get from my cancer and the more I think I understand about the dynamics of cancer, I know we all go thru the pity thing but I really don't think there's any room in cancer for someone to pity themselves as that's just another thing cancer can steal from us; our dignity so IMHO the sooner we can come to grips with cancer and fight it head on, the sooner we can help our bodies join with our outside helpers and give us the best chance to beat it.

I just mean that I don't think pity (or it's opposite denial) does us any good and the sooner we can get past that stage, the better.


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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Jeanna, I think you're being very smart to opt for the "in-between" place of going back part time for a week and then continuing full time if all goes well. You're letting Rod know that you care enough to start gradually but you're also taking care of your own needs, which are so important! I laud you for trying to find a middle place to land; you're conscientious and caring and also wise enough to know your own needs and wants.

There's no perfect answer for this, but you are clearly doing the very best you can, and that's all you can do! Hang in there, and good luck to both of you with this big transition. It will go all right, I feel sure.


Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
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Thanks for your imput guys. I know it is going to be really hard for both of us on Monday. I worked right up until the second last treatment, up at 5am, getting Rod - meds/feeds etc ready, showering, going to work, coming home, taking him into the city - 40mins to 1 1/4 hrs away depending on the traffic - for his appointments & treatments, getting home at any time between 6 and 8.30pm at night, repeating the morning ritual, sitting for an hour, going to bed, then getting up and doing it all again. It was like Groundhog Day! In hindsight, I don't know how I did it, I don't know how anyone can do it like that. Then the 1st 2 post Tx weeks I was like a mad woman, work was more restful! The last 2 weeks have subsided. It does sound a bit mean Liz - tough love etc, & I know where you're coming from, but I also agree with David - Rod can do his own meds now if I get them ready pre work, he can have 4 wheetbix & 1 liquid feed before I go to work, if he gets hungry he can have eggs/soup/more wheetbix, sleep, before he knows it I'll be home again. I am only 10 mins by car from home, & yes, a phone call away. the threats of infection, high temps etc have abated, and he can call the hospital nurse at any time. I reckon it will probably be harder in the end for me to leave him! No specific reason that he wants me home another week, I asked, he said he just 'wants me here'. I can understand this, but I have to go back to work sooner or later, we have no money!! It's not that I don't want to be here with Rod, I do, could then sit here & chat all day with you guys while he's sleeping...but logically, we don't have the finances to enable this - I'm at a 'no work no pay' status, until May....winning the lottery could be handy, but I'd rather come up with a cure that cures all by Monday. My work isn't a nasty place - because of Rod and another guy I work withs' mum, work donated $10k to Peter MacCallum Cancer Research in July, when the company turned 150 years old. More tears.....I could be working for a less understanding company....how do people without a carer get on? [ps - he is back to being able to swallow whole meds without being crushed - good huh?...]


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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Hi Jeanna

I'm really sorry to hear that you and Rod are having to deal with this horrid disease. He must be improving if he can swallow meds without crushing them. Hopefully that is a step forward.

I also had my radiotherapy and chemo at Peter Mc Cancer Centre. My surgeries have been performed at other hospitals, but some of the surgeons based at Peter Mc also operate at a couple of other hospitals around Melbourne. Does Rod have to have any surgery?

Where abouts in Melbourne do you live?

Karen



46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
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Hey Jeanna

please don't think i am being judgmental because i most certainly am not and have no right to be .I packed my bags and left my husband 5 weeks after his tx finished because he had hammered me into the ground in that period when his rads had finished and i was physically and emotionally wiped off the face of the earth.During that time his recurrence occured (something i struggle to live with every day)but I needed to stand back and as it turned out doing that was in fact the only thing that got us through the following four weeks .We were living on welfare by then as Rob was self employed and i am registered disabled,so i know where you are coming from.What i am saying is that i don't think you need to be doing it tough just yet,time enough for that if he continues to need you as an emotional crutch for much longer.He will be scared of being alone ...simple as.Not all men are as tough as our David lol some are just big babies who want their hand held for a bit longer than others.I thought my man was tough until i saw his face when i walked back in two weeks later and boy did i feel like the queen of bitches.

Of course you have to work and of course you will feel like a mum leaving her newborn for the first time.But if you are scared ..he will be to.



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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Posts: 207
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{{{{{Liz xxx }}}}} God, why is the globe so big?


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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Jeanna
facebook has made the world much smaller for a lot of us here,as we can chat live which is brilliant.I sure wish it had been around when i was sitting in the wee small hours typing long posts to Margret and Donna and many others friends and then waiting hours for their reply.If you fancy joining us then my facebook name is Liz Read and in my friends list you will se Margaret,Christine,Wendy,Gabe,David,Jim,Brian,and many many more


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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