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#97168 06-11-2009 08:40 PM
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Pat_451 Offline OP
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I was thinking today that in 9 or 10 days our treament will be over. We have been driving everyday to go, about 45 mintues each way. I have a new schedule and what's going to happen when it's over. They tell us they can't do test of three months after the treatments. What do you do in that three months? Try to put part of the broken pieces together? I don't think can go back tothe way they were the change has been made, there are physical reminders daily.
My work schedule could go back to normal I suppose, but what else?
What have others experineced?
Pat


Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
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Hi Pat,

If you go to the menu bar and select "my stuff" then "profile" and scroll down to the bottom where it says "signature" and you can put details about your type of cancer and treatment.

If you are doing radiation and chemo...the 2-3 weeks post treatment can be very difficult. Your focus has to be on hydration, calories, protein and the proper pain and anti nausea meds.

Beyond that, every one recovers at their own rate. My husband finished treatment in August but wasn't able to return to work until March because his job required a lot of travel. I think many people return earlier than that if they have a job that involves more computer or desk work than travel.

If you could post more details about your treatment, others who have been on the same path could probably provide more information.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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Wow. What a loaded question. At the end of treatment you DO feel like a lost puppy, and that is where so many here will tell you "Welcome to Survivorhood". It is not for the faint of heart. In Survivorhood you fast realize that "normal" is (and always was) just a cycle on your washing machine.

For the first while post treatment you sleep. Your body goes about the business of repairing itself as well as it can. You eventually get used to things you never thought you would like having to go back to the house to get your teeth because you don't wear a denture all the time anymore! You work on your sense of humour and you work on other parts of "YOU" that maybe weren't paying attention to the world in the manner you will from this point on.

You will spend some time worrying. For some of us it takes up far more time than it should - but you worry about scheduled tests, worry about appointments, worry about results, worry about friends.

What you do - I hope - is really learn to appreciate the "NOW" ness of your life. It really is all any of us have smile

Be well.

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)
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There are major issues being researched at the moment regarding post TX "abandonment".I found this time to be the very worst to cope with.For weeks you have a military regime and your life is full of hospitals ,doctors radiotherapy technicians,nutritionists,cancer nurse specialists and all the sundry care that goes with this giant safety net.Then one day you wake up and the tx is over,and you have no hospital visits for six weeks,no doctors appointments,no advice on what happens next and it feels like a bereavement.Your own family doctor may not be very familiar with this particular type of cancer,your partner may be sleeping 18 hours a day,choking on mucous,totally unable to speak or take nutrition by mouth,burnt to a crisp and in constant pain,and all you can do is flounder from day to day.

Without OCF i think i would have gone seriously loopy,and its wrong.to cope as a carer i needed a strict schedule to follow and this cutting of the umbelical cord was traumatic to say the least.

In the Uk macmillan Cancer support are running with this problem and doing very detailed research into the needs of the lost souls in the post tx period,until then all i can advise is come here every day and post your problems and your feelings,and slowly things should turn around

good luck to you both.

liz


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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There are major issues being researched at the moment regarding post TX "abandonment".I found this time to be the very worst to cope with.For weeks you have a military regime and your life is full of hospitals ,doctors radiotherapy technicians,nutritionists,cancer nurse specialists and all the sundry care that goes with this giant safety net.Then one day you wake up and the tx is over,and you have no hospital visits for six weeks,no doctors appointments,no advice on what happens next and it feels like a bereavement.Your own family doctor may not be very familiar with this particular type of cancer,your partner may be sleeping 18 hours a day,choking on mucous,totally unable to speak or take nutrition by mouth,burnt to a crisp and in constant pain,and all you can do is flounder from day to day.

Without OCF i think i would have gone seriously loopy,and its wrong.To cope as a carer i needed a strict schedule to follow and this cutting of the umbelical cord was traumatic to say the least.

In the Uk macmillan Cancer support are running with this problem and doing very detailed research into the needs of the lost souls in the post tx period,until then all i can advise is come here every day and post your problems and your feelings,and slowly things should turn around

good luck to you both.

liz


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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The few weeks post Tx are usually the worst and what compounds that is you aren't going to the doctor every day so you kind of feel abandoned and even scared like your security blanket has just been ripped away from you. I to was a 45 mile one way trip away from my cancer center so we had to call and then wait for the return calls. Not a fun time. I walked out of my dark tunnel in my 3rd week post Tx.


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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Pat_451 Offline OP
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Wow, This really souds pretty scarey at this point. I guess I had better get myself prepared. Being the caregiver keeps me going, seems there are always things to do. I will have to stay close to the boards for support


Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09 CT & Pet Scan showed more cancer in left lymph node and primary at the base of the tongue.TX Radiation 7 weeks 5 days a week last day is 6/25/09
Chemo completed 6/19/09
Peg Tube 5/22/09
Joined: Jan 2009
Posts: 476
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Hi. I posted this same question 8 weeks ago when John was finishing up treatments. In fact it is about 4 posts down from this one titled "strange feeling". The tough part for us has been that everyone hears that treatments are over and they automatically think everything is back to "normal". More than one person asked me "are you guys going out to celebrate?" Interesting question considering John is still being fed through a feeding tube. I try to just take each day as it comes. Things don't change day to day, more week to week - baby steps. Best wishes.


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: Jan 2009
Posts: 225
"OCF across the pond"
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Martin i think was worse post TX than during. He slept 18 hours a day and I had to wake him up to feed him through his tube.
But it slowly slwoly gets better, but sometimes it feels like you are going backwards, then one day you see an improvement. It's very gradual and very slow. But it gets better.
hang on.
All my best
Cecilia


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
Joined: Jan 2009
Posts: 225
"OCF across the pond"
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Liz,
Did you find the macmillan nurse helpful? We had one assigned to us and I sent her away! She was horrible! The day after the operation she told Martin to get on with it and accept he had cancer and he might die and be prepared! I know it is good to be truthful but that was pushing it! He was half hallucinating on morphine and still in shock from the whole operation. I sent her away :" We can deal with this ourselves thank you" I said "we don't need you to say he is going to die, the surgeons certainly haven't said that!". I was horrified! She was also rubbish with his palleative care, she kept changing his pills when he kept saying no, I am comfortable with what I am on now (then the pain would come back). Maybe she was having a bad week, but she wasn't nice at all, or helpful.
Cecilia


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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