| | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | OP  "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Well something came out of the programme wether its good or not i am not sure.The programme was 45 minutes and i guess one third of it was devoted to pauls disappearance.watching it was the most traumatic experience i have had since robin died.they kept showing huge blown up pictures of paul taken over the last couple of years,even one i took myself on robins first birthday after he died.I didn't see paul on the tv screen!!! I just saw Robin.I had forgotten how alike they were.Results were the flood gates opened.All the tears i have never cried,all the pain i wouldn't feel,thank god i had my bereavement session tonight. It was nearly two hours in before i could even speak.i recorded the programme and cant stop watching it,i dont hear the words,i am mesmerised by the many images of paul/robin and i wonder how i got here.
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Awe Cookey, you sure have been thru the bad times of life. You almost have me crying with you. I might have to start crying for myself . I have to call my Oncologist tomorrow and get in before the 25th. This pain is so bad I can't tolerate it much more. It has shown me that even tough gys go to their knees sometime. Can't even eat so I went to dairy queen and got the girl to make me an extra thick raspberry shake for nourishment. Even insure it too hard on my tongue and the entire area.
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: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | oh Cookey.....words just can't convey.....I'm so sorry the program caught you off guard. It's just the worst when something catches you that way and so hard.
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | 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 | Liz
You have been thru so much in such a short time frame. Hope the program accomplishes finding Paul and ending this nightmare. Im so sorry this caught you off guard and made you sad. Losing Robin is something so hard to heal from. My thoughts and best wishes go out to you.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | OP "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 |
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Cookey. I have done everything to get this to play short of kissing it. What's the trick to watch this??
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | OP "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi well just give it a kiss lol.I am not sure jim maybe in won't play in "foreign" countries.sorry i wasted your time.Oh by the way you can paddle my ass anytime.!!!!!!!!!
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.
| | | | | 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 | Liz,
Sorry that you had to relive that but I'm glad in a way that you unleashed some pint up emotions.
Hopefully some good will come from the program. It's just so strange.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Liz, I had no idea you had this additional pain to deal with. You really have been through so much. I have tears in my eyes just thinking of how you must have felt watching that program. It's good to cry and feel those feelings. We are all here for you like you are always here for us. I'll be thinking of you.
Jim and Liz...I kissed it too and nothing. We have to be in the UK to view.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Liz,
I am so sorry that the video upset you so much but hopefully it will prove to be a cathartic experience and allow you to release all those pent up tears and emotions you've had since Robin's death. Bottling up all that grief inside is not good.
You may find that other events trigger a similar reaction. I never cried when my father died. He had had a stroke and never came back from it. He was in miserable pain and bedridden for 11 months so his death was a blessing. A couple years later, I was sitting in the opera house when the orchestra struck up my father's favorite overture. I broke into uncontrollable, unconsolible tears and simply couldn't stop crying. After it, I finally felt like I had said goodbye. Hopefully your traumatic experience will help ease your grief.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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