#77202 07-19-2008 01:03 PM | 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 | My dear friends
i am writing this message to ask you all to pray for the safe return of Robins brother Paul
Paul has never really got over losing Robin almost exactly one year ago.As a result his marriage has broken up and he has become increasingly depressed.On Thursday he tried to hang hinself,but lost his nerve.Today he left his home between3.30 am and 6.30 am.He left his car ,his keys,his wallet and his phone and he hasn't been seen since.It is now 9.30 pm and the police and army helicopters have been searching for him over the extensive woods and common land that surroung the village.They visited his wife half an hour ago to say they are gravely concerned.
Please please please pray for his safe return.This is just too much to bear.
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.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Oh my, Liz, that is so sad. I am sending out all my best wishes that they find him and he is at least physically OK. Please let us know what happens.
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"
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Liz, what a very sad situation. I pray that they find him in some out-of-the-way place where he went to think....What a terrible toll this horrible disease takes on ALL who are connected with it, not just those who are physical victims of it.
I know that Paul is very special to you, and I know how your heart must be aching with worry for him.
My prayers will be going out for your whole family, and for Paul that he may be found and may find a way to climb out of his terrible grief.
XOX
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Oh Liz - I just sent you a PM and then read this...If there is anything I can do please, please let me know. I will be praying for him AND for you and his family. Please keep us posted and let us know. We are all sending prayers and angels your way.
Hugs,
Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Liz,
My prayers are with you and the family. May we hear good news soon.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
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Joined: May 2007 Posts: 44 | | | | | | 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 | Thanks everyone
its 3.30 in the morning and i still haven't heard anything.The police suspended the air search until 9pm this evening because so many people walk thier dogs on the common that their thermal imaging cameras were picking up too many heat sources,so they decided it would be better to wait until dusk when most people are back home.robins sister in Portugal is distraught .Paul is her twin,and has just been out to stay with her for 10 days.She tried to persuade him to stay,but he had to get back to work,and was desperate to try and resolve things with his wife.
Last weekend i was down in Hampshire for the weekend.I spent two hours with Paul,and was shocked at his physical and mental state.
He has lost so much weight and was in a constant state of agitation.When i left him,the last words i said to him were"what are you going to do now?" he replied "going to find the nearest tree".I grabbed hold of him and really told him his fortune!! I never thought for one minute that he might really do just that. He text me the next day to say how much he wished i lived nearer as he would come and stay with me.He felt so alone and thought i was the only person who understood how he feels.why didn't he just get in his car and come too me?
This waiting is just like last year waiting for robins scan results.I just thank god that their mother has no idea what is going on.She was admitted to a care facility last July with alzheimers.she doesn't even know Rob is gone even though Paul has told her half a dozen times.
I am sorry to ramble ,but my head is all over the place.
Last edited by Cookey; 07-19-2008 08:18 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.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Cookey,
I hope you hear from Paul soon. I was thinking of you and your family as I watched the Mass given by the Pope in Sydney this morning for World Youth Day.
Love
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Liz,
I'm hoping that you will get some news soon. I'll keep your family in my prayers.
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Sep 2007 Posts: 24 Member | | Member
Joined: Sep 2007 Posts: 24 | liz,
i'm am praying for his safety, and for your whole family.
emma
wife to Del,dx.4/07 BOT SCC t3n3m0 3rounds chemo (5fu,cisplat,taxotere,erbitux)35 IMRT tx.with weekly erbitux.finished 9/07. 12/07 biopsies +,surgery not an option.returned to palliative chemo 2/08. 6 tx.of cisplatin/taxotere,methotrexate 8 tx. He died Aug 20,2008, but lives always in my heart.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Liz- I'm so sorry. Depression is a horrible thing to deal with. My prayers are with your family.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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Joined: Sep 2006 Posts: 8,311 | Liz,
So sorry you are having to deal with this. I hope they find him well and maybe this will lead to some professional help.
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: 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 | Pauls dissappearance has just hit the local radio stations with the headlines "police are increasingly concerned"i spoke to his wife a few minutes ago and house to house enquiries and helicopter searches have revealed nothing.it is 37 hours since he was last seen.
this is not looking good,and is so so stressful.
thanks for all your messages
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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Liz:
I just read your post. I am so sorry you have to go thru this. I am praying that Paul comes back home or that he is found quickly.
Christine
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Oh Man what his mind had to be going thru. You have my prayers for his safe return and for yourself too. Not much to say except to pray and hope for hie return.
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 |
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: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | We're all here for you, Liz.
Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2007 Posts: 735 | Liz
Wow ..so soo sorry to hear I have been away for a bit , my grandfather was ill and passed. God I hate Cancer ..it takes so much from so many . I hope that you hear some news soon and I pray that it is GOOD !! Keep us posted !!
Shar
Sharlee
35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
| | | | | Joined: Dec 2007 Posts: 57 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2007 Posts: 57 | Liz,
Praying for good news.
Noemi
Brother diagnosed SCC August 2005, radiation and chemo- 2 rounds, total glossectomy Sept. 2007, passed away May 21, 2008
"Everyday is beautiful" he stated on a cold and foggy Chicago winter day.
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Liz,
I have been praying for Paul's safe return all day.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | 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 | 6.00am the police are saying ther is very little chance of this havng a good outcome now. 51 hours missing.
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: 10,507 Likes: 6 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: 6 |
Liz:
Still praying hard here for Paul's safe return.
Christine
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 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | God, Liz, the waiting to hear something has to be just agony. I am so sorry you are going through this. My thoughts are with you and his family.
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"
| | | | | Joined: May 2008 Posts: 73 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2008 Posts: 73 | Oh my God Liz, what all are you goin through , but u sure are a strong woman, hang in there, Paul will be home soon....
- Avinash
My Father,
Age 59, T2N1M0, Stage 3, smoker left 5 years back, casual drinker , NACT with TAXOL +5FU+Cisplatin x 2, and 70 Gy in 35# from 03/10/08 to 04/26/08, no surgery, After Chemo cycles tumor reduced 60%,
Cancer Free now !
| | | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Liz -- All thoughts and prayers are with you and family, praying for his safe return. It is a crime that you have to go through this. You are a strong lady, and your support here means a lot to so many. We are all here for you.
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Barb's brother drowned on Fathers day in 2006. He was just a nice young guy , but it took a week to recover his reamins. Waiting cn be very hard on the mental state of the family. I, for your sake, they find either him or his reamins to end this waiting. I hope it's him and he is kicking high.
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 | Bless you Jim
i just want this over,selfish as it may seem ,i did my fair share of waiting for a phone to ring last year,and i need to focus on robin and me this week.There has not been one reported siting of him,and today they got the sniffer dogs out.when the hell does whoever decides these things think that we have had enough.
Thanks again for your support everyone.
love 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.
| | | | | 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 just saw this post at noon and didn't have time to post. You are right to want this resolved. You are not being selfish. I hope they find him soon so you can have some peace. Will be thinking of you.
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
| | | | | Joined: Mar 2007 Posts: 163 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2007 Posts: 163 | Liz ..we had the same problem with my Dad 5 years ago. Found him by the RR tracks then up the golf course with a rope and a ladder...in the end he stabbed himself 6 times and nearly succeeded.
What saved him was electric shock therapy which I was unaware they did any more.
I will pray for your family.
Caregiver to husband (Pete) Stage IV Base of Tongue. Dx 04 2003 Chemo/Radiation no surgery.. doing great!
| | | | | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Liz
Only just found this thread.
Just to let you know I'm thinking of you and hoping for a quick resolution..
Sunshine.. love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Jun 2008 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | Liz,
I haven't been on for several days. A lot has been going on but nothing compared to what you and Paul's family are going thru. My thoughts and prayers are with you all.
Karen
Karen-age 47 5/07stage 1 tongue right side partial glossectomy 3nodes removed on right. 6/07 didn't get it all-2nd partial glossectomy. 11/07 stage 3(?) partial glossectomy,flap.all nodes removed on right side. 1/08 peg tube. IMRT 39tx,chemo-cisplatin. 5/08 left side 1 lymph node w/cancer - removed
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Liz- How are you holding up? I think about you every day and send good thoughts your way.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | 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 Sue
thanks for thinking about me when you have so much going on in your own life.I have a feeling i am slowly unravelling !!! I have not slept properly for a long time but at the moment i am awake in the early hours reading posts and watching telly.Today for the first time i feel out of control and i keep shaking.I have just had a phone call saying that the police are taking the search national.We think they are going to put it out on all the southern regional news stations as well.As far as family are concerned,the only adults he has are me and his sister,and of course his poor mother who is completely out of it with alzheimers.I keep trying to think what Robin would want me to do,and i just don't know.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Liz,
Please take comfort in knowing that many people around the world are praying for Paul to be found. Not everyone who reads the boards replies so add them to the list of OCF forum members who have responded publicly and privately, the local people and now people in your region and nationally.
Your reactions and feelings are perfectly normal. Approaching the 29th would be difficult by itself.
From what you have written before, it would seem that
Robin would expect you to continue calling on your inner strength until Paul is found and then deal with whatever situation arises. For now you can only trust that the searchers are diligent and that whatever the outcome, some good will result.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Liz,
My heart goes out to you as you live through these difficult days.
There is a custom to "say" the chapter of Psalms corresponding to the next year of a person's age. If some one is 5 years old, read chapter 6,etc. Some people do this on a daily basis. I don't understand why, but I know that the Book of Psalms is particularly effective in praying in times of trouble, for expressing gratitude and on many special occasions, both good and unpleasant. It is also good to give charity. This can be any amount, even the smallest coin can be set aside.
I hope that these ideas give you comfort. | | | | | 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,
You are a very intelligent woman who has been put thru the ringer in the past year or so but I don't want you to get down on yourself. You were the very best wife and caregiver that Robin or anyone could have had. You are not responsible for, nor in control, of what happened to Robin or his brother so please just take a deep breath and lets see how this plays out. It is unfortunate to say the least but lets keep this latest tragedy in perspective until the whole story unfoils.
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 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Dear Liz
I am so sad to read what you are going through at present. I hope there will be a positive outcome for your family.
Love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | My thoughts and prayers are with you, Paul and his family for his safe return. I echo the sentiments of those before me, you are doing all you can with prayers and good thoughts for Paul's safe return - that would be what Robin would want you to do.
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)
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Liz, The frustrating thing has to be that there really isn't much that you CAN do other than wait for any news and try to support his other family members (sounds like really just his sister in this case). That lack of any control has to be incredibly hard, especially with everything else you have been through in the last year. Just know that many people are holding you in their prayers as you go through this.
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"
| | | | | Joined: Nov 2006 Posts: 166 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2006 Posts: 166 | Liz, How are things going over there? Have you heard anything else on your brother in law? BB
Bill B. Dx 10-16-06 Stage 4 T2N2bM0 SCC Left Tonsil,3 nodes. 1st tx 11-28-06, last tx 1-8-07. 3x Cisplatlin, 5fu pump, and Doxetaxel. Modified neck dissection,20 Nodes removed, all clear 02-21-07. HPV+,33 IMRT start 3-22-07 70GY,Completed 05-04-07 | | | | | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2004 Posts: 316 | Liz, my thoughts are with you...life's not fair some times.
Tizz
End of Radiation - the "Ides of March" 2004 :-)
| | | | | 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 | How very odd that one year on, this forum is keeping me sane again.Answering Pms keeping up with everyone on the boards and now the new face book site makes the time fly by.Going to work in the hospice yesterday was great,and my boss gave me a job to do that took my mind of things totally,as i collated results from a survey we had done,that needed turning into a statistical analysis.it wa 4pm before i realised,and when i got home i was exhausted.After checking in here and also checking the police,radio and television sotes i was ready for my bed.Pauls estranged wife rung and told me the police have moved their search down to cornwall ,and are searching a village that robin and his family went to every year for their holidays just in case paul hitched a ride down there.
We are expecting the news to hit the media big time today,and all the local shopkeepers in the village have posters and pictures in their windows.Pauls step daughter has formed a group on face book appealing for any sitings,and as of 4 am this morning 284 people have joined.Like robin,Paul has lived in Headley all his life and the support from friends and extended family is phenomenal.
to all of you ,my very special family,thank you so much for allowing me to use this board to unload again your messages are keeping me in once piece yet again.
malka your prayers are much appreciated.
David as a year ago your gentle hand slap makes me smile and pulls me up.
Bill i sent you a short e-mail on tuesday just to say i will write soon.
nelie you have enough on your own plate so your thoughts are especially gratefully received
paula,sue,joy,neomi and all who have pm'd me,cheers girls,you are doing great.
Helen i wish bren was here!!!!
i am going to check the media and police sites again,and the i will get ready to go to the hospice
much love to you all
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.
| | | | | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 718 | Liz,
Sounds like a tough time, I can't even imagine. Sending good thoughts your way and hoping that he is found soon.
Lots of Love,
Margaret
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.
| | | | | 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 | Thanks margaret
there hasn't been one word of news.
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: 10,507 Likes: 6 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: 6 |
Liz, Ive been praying for a good update on Paul. Sorry to hear there is no news yet.
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: Jan 2008 Posts: 179 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2008 Posts: 179 | Oh Liz... I am so very sorry. I only just read this thread and can only imagine what you must be going through right now. Please know that my thoughts and prayers are with you. I will be waiting to hear if there are any new developments. Your OCF family is enveloping you with love right now. I hope you can feel it.
Last edited by LarrysDaughter; 07-23-2008 11:27 PM.
Dad: Age 65 Heavy smoker/drinker. Biopsy-No surgery. Cancer base of tongue/throat. "Invasive Squamous Carcinoma RRT" --Beginning 1/9/08: IMRT treatments (5X/wk),chemo pills (4/day) and Chemo IV (once/wk) PEG tube inserted 1/25/08. Treatments ended 2/26/08
JUNE 30, 2008 Officially CANCER FREE!!!
| | | | | 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: Jan 2008 Posts: 179 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2008 Posts: 179 | Has there been any word?????
Dad: Age 65 Heavy smoker/drinker. Biopsy-No surgery. Cancer base of tongue/throat. "Invasive Squamous Carcinoma RRT" --Beginning 1/9/08: IMRT treatments (5X/wk),chemo pills (4/day) and Chemo IV (once/wk) PEG tube inserted 1/25/08. Treatments ended 2/26/08
JUNE 30, 2008 Officially CANCER FREE!!!
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Hello Dear Friend.
I haven't been on in a while, so I just now read this thread.
My heart goes out to all of you, especially Paul. I don't know how you manage to be as strong as you are...thank God for that inner strength that you have. Can you email me the facebook link? Jackie has friends in Ireland and in England, can't hurt to broaden the search, and it would make me feel better to know that more people are thinking about you and praying for you and the family.
Much love and Peace to you.
Donna
P.S.
I was thinking of Brenda today, I just said to my girls last night how much I miss her.
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | 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 | hello Ginny and donna
no there is no news.I was speaking to Robs cousin last night and apparently the local paper have made it headline news,and the village has been saturated with posters and pictures.the face book site is called
PLEASE HELP FIND MY STEP-DAD PAUL READ.
There have been nearly 400 hits ,but most are just messages of support,which is lovely,but no sitings.there are pictures of him there and you can access the site by clicking on my profile in the OCF site if you are one of my friends,and then clicking on the group in my personal page.Alternatively just use the face book search facility
thanks for the concern.
love liz
Last edited by Cookey; 07-24-2008 02:45 AM.
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Liz,
Tried to follow your directions...can't seem to find where you were speaking of.
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 |
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | 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 | One week has passed and not a thing.I think this family sure must have upset someone up there big time.It seems surreal.the front page of the local paper has Pauls disappearance splashed all over it,and the second page has his brothers first anniversary memorium!!
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Liz,
I cannot imagine what you and Paul's family are going through right now. Not knowing must be agony. My heart and my prayers are with you all.
- Margaret
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
| | | | | Joined: May 2008 Posts: 73 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: May 2008 Posts: 73 | Liz,
I dont even know how does someone becomes strong enough to deal with such situations.
I sure feel u need a break from all this ...
will pray for you and ur family.
- Avinash
My Father,
Age 59, T2N1M0, Stage 3, smoker left 5 years back, casual drinker , NACT with TAXOL +5FU+Cisplatin x 2, and 70 Gy in 35# from 03/10/08 to 04/26/08, no surgery, After Chemo cycles tumor reduced 60%,
Cancer Free now !
| | | | | 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 | pauls estranged wife phoned yesterday to give me an update on the progress with the police.pauls boss who was the last person to see him and who reported him missing,has organised a search party of 200 or so locals.in liason with the police,they are going to cover areas they havent already searched.
She also informed me that the police will carry out covert surveillance on Robins grave on the 29th.I cant explain why,but this has upset me beyond all belief.The thought of people lurking in the bushes and watching friends and family who will be going to the cemetry to pay their respects on the anniversary of his death,just offends my sensibilities,and i cried a lot at the thought of robins memorial day being sullied in such a way.
Is he never to get peace?
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: Jan 2008 Posts: 179 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2008 Posts: 179 | Oh Liz, I am so sorry that you are having to go through this. I hope that Paul is found safe and sound. On the one hand, its nice that the search is continuing for him and so many people are helping. On the other hand, I can understand how you feel about the anniversary of Robin's death. Please know that you are in my thoughts all this way "across the pond" and that I am sending you cyber hugs.
Dad: Age 65 Heavy smoker/drinker. Biopsy-No surgery. Cancer base of tongue/throat. "Invasive Squamous Carcinoma RRT" --Beginning 1/9/08: IMRT treatments (5X/wk),chemo pills (4/day) and Chemo IV (once/wk) PEG tube inserted 1/25/08. Treatments ended 2/26/08
JUNE 30, 2008 Officially CANCER FREE!!!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Liz,
Have tears reading the latest from you today.
Cookey is sitting on my shoulder while I type and is not sure what is going on.
Don't know what to say except thinking of you and send my cyber hugs along with all the others.
Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Hi Liz - I can't add much more to what everyone else has expressed for you, except that I do hope he will be found soon, alive, and can be helped back to some peace in his life. I have told our good friends in West Wellow, Romsey, Hants. to keep an eye out for Paul also. Please know you are in ALL our hearts and minds for relief soon, finally. You have so many people pulling for you.
Warmly, JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Liz, I am so sorry there has been no resolution about this. Of *course* you are upset about the police covertly watching Robin's grave on the anniversary of his death. I can see why they want to do it but the grief you'll be feeling on that day will be hard enough without knowing you are being watched by strangers.
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"
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 |
Thank you for keeping your OCF friends updated. We are all praying for a positive outcome for your family. Of course you would be upset about police monitoring Robin's grave. This is being intrusive to you and taking away your privacy. Lets hope Paul is found quickly so you can have you day of mourning in peace.
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: May 2007 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2007 Posts: 44 | [quote=Cookey]Is he never to get peace?
[/quote]
I just have to again say he isn't there at the grave. He is at peace. I hope you find peace too. | | | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Liz, I just read and caught up with you. So Sorry to hear about Paul missing. I pray someone will have something that will help find him soon. I will pray for Paul, may he find some peace in his journey that he has started and return home. You take care!! Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | Liz,
Draw on the incredible inner strength of spirit that we saw develop and flourish last year during Robins struggles. Peace is there and acceptance of what is to be can be found in your heart. I will also be praying for a good outcome and I'm secure in the knowledge that you will make it through this latest challenge. You know you can overcome anything with your friends behind you, and all of your friends here are behind you 100%
Take care. You're a strong lady and together we will get through this
Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | | 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: 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 | The search revealed nothing,but the police have received a report of a man seen walking down the highway at 5.30 am last Saturday.
My gut is churning in fear that tomorrow will see the end of this nightmare,because i dont believe if paul is still alive that he wont get in touch,buti know that without his phone he wont have my number.
Although robs ashes are buried in Hampshire with his father,i thank god that i will be going to my own memorial that is in the cemetery here in yorkshire.My mind will be distracted though as i will be filled with the images of police lurking in the trees surrounding the old village church in Hampshire,and i feel so angry that Robs daughter and cousins,nephews and nieces will all have to deal with that head on.
How the hell could Paul sully Robs memorial day like this,after all we went through together last year,and my mind is filled with pictures of Paul sitting by Robs bed stroking his head and whispering things to him as his life ebbed away.
In another part of my head i pray that i will drive to Harrogate tomorrow and find Paul sitting by Robs memorial here in Yorkshire ,or at least something to let us know he has been here.
I am working at the hospice tomorrow.so at least i will be in my own safe world for the day.
thanks for all your wonderful words and support.At least i know the family i have here will never hurt me,or desert me.
love 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.
| | | | | Joined: May 2007 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: May 2007 Posts: 44 | Paul must be in so much pain. I understand your angry but please try not to let that over shadow everything. He didn't set out to sully Robs memorial day. It seems to me he was just in so much pain he could think of nothing or no one but getting away from it. I know the feeling.
I think you need to think of how Rob would feel if he was here, I'm sure if he could help find his brother he would gladly. Try to think of them watching his grave as Robs way of helping his brother. | | | | | Joined: Sep 2007 Posts: 79 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Sep 2007 Posts: 79 | Liz, my prayers are with you. I hope that you can find peace over the next couple of days.
Jean
* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
| | | | | 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: 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 |
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Liz --
Thinking of you today.
All the best,
Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2007 Posts: 211 | Liz,
I'm thinking of you today.
Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+
induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 |
Liz:
You were in my thoughts and prayers today.
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 | Well i have just had the perfect end to a very very difficult day.Some of you may remeber my "cancer buddy"Alan aka dancingwithroses.He is an 11 year oral cancer survivor,and was an invaluable and special friend to me last year.About three months after Robin died his wife was diagnosed with SCC at the base of her tongue,and due to many other health problems she was treated with radiotherapy only.I heard 30 minutes ago that she died this morning,exactly 12 months to the day after Robin.
And so my memorial day ends.Despite every ones hopes and conviction that Paul would never let this day go by without getting in touch with his sister or me we have heard nothing,and i cannot help but feel this can only mean that Paul is no longer with us,indirectly yet another victim of this pernicious disease that i have come to hate.
I have received many text messages and e-mails today that once again bring home how much Robin is still loved and missed by so many people, who are dreading the news that we have lost another much loved member of the Read family so soon .
Nelie and Eileen i will be thinking of you both as you face yet more uncertainties.
Joy,Donna and Ginny thanks for your pm's this morning,and to all above thanks for your kind thoughts.
god bless this forum and all its members.
love liz
Last edited by Cookey; 07-29-2008 04:59 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.
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Liz,
I wish I could offer a hug and some perfect words of comfort. I saw the photos of Rob's memorial on Facebook and it is beautiful and very moving.
My thoughts and prayers continue to be with you.
- Margaret
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
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Liz, I can't let this day pass without sending you some caring support. How tragic that you have to suffer all over again.....in so many ways! My heart goes out to you, and my voice joins many of your other friends here in prayer for your continued strength and comfort.
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Dec 2006 Posts: 147 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2006 Posts: 147 | Liz,
I have been thinking about you all day and hope the healing begins very, very soon. My thoughts & prayers are with you.
Hugs,
Paula
Caregiver to Husband 50 yrs.young-non smoker/non-drinker; Stage IV - all treatments stopped August 2009
Lost the battle November 23, 2010
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 |
Liz:
What a difficult day you must have had. You have been in my thought and prayers today. Im sure it was quite a shock to have your friend pass away today of all days. Im very sorry for your loss on this already sad day.
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: Jan 2008 Posts: 179 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2008 Posts: 179 | Liz,
I am sorry to read this news. I know today was difficult enough for you. As hard as it is, stay strong. You are in my thoughts.
Dad: Age 65 Heavy smoker/drinker. Biopsy-No surgery. Cancer base of tongue/throat. "Invasive Squamous Carcinoma RRT" --Beginning 1/9/08: IMRT treatments (5X/wk),chemo pills (4/day) and Chemo IV (once/wk) PEG tube inserted 1/25/08. Treatments ended 2/26/08
JUNE 30, 2008 Officially CANCER FREE!!!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Liz, I like many here have been checking a few times a day to see if there was any news on Paul. Sadly not yet  Also just saw the photos of Rob's memorial on Facebook. My thoughts are with you. Love Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Liz,
You have been in my thoughts and prayers all day. I hope you hear about Paul very soon. I am so sorry about the added grief of your friend's wife passing away today.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | 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 | I hope you get some good new soon.
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: 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: 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 | Thanks for all your messages on Robs memorial day,and for the familar concern you all have shown regarding Paul.
I received a phone call from the Surrey police on Wednesday morning asking if Paul was with me or if he had been in touch the day before.They,like the rest of us seem to have been pretty convinced that he would surface somewhere on the 29th,but there was nothing at all.Now this milestone has passed spirits are certainly flagging,as more and more people begin to realise that our chances of finding Paul alive and well,are slowly slipping away.
His twin sister Pauline is in meltdown now as she faces the prospect of losing both her brothers in one year.
It is wonderful to go on facebook and see so many faces to go with the familiar names .We sure are a good looking bunch.
love and hugs to you all
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.
| | | | | Joined: Jan 2008 Posts: 179 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2008 Posts: 179 | Ugh...I was so hoping this was a post with some news. Instead it is still a mystery. I am so sorry Liz. I hope you are holding up okay. Still sending hugs and prayers your way!
Dad: Age 65 Heavy smoker/drinker. Biopsy-No surgery. Cancer base of tongue/throat. "Invasive Squamous Carcinoma RRT" --Beginning 1/9/08: IMRT treatments (5X/wk),chemo pills (4/day) and Chemo IV (once/wk) PEG tube inserted 1/25/08. Treatments ended 2/26/08
JUNE 30, 2008 Officially CANCER FREE!!!
| | | | | 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 | The police rung again yesterday.They have called off the search now.They are classifying Paul as missing presumed dead.Now we just wait for the call.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 |
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"
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 |
Liz, sorry it has come to this very sad news. Wishing you would get some closure. I will still keep you and Paul in my prayers.
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: Oct 2007 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 71 | I am so very sorry for you and your family. I know you just want closure. You are in my prayers.
Tammy 43 yr non smoker- Dx-10/11/07 Stage 4 Tongue Cancer Surg.10/17/07, 1/4 Tongue and 14 Lymph nodes 5 positive, Peg tube/Chemo port,Chemo 3 wks/Radiation 6 wks begins 11/07 end 02/08.Teeth removed prior to radiation. PetScan 05/08 CLEAR 09/09. 2011 diag. w/osteoradionecrosis.100 HBO's
| | | | | Joined: Jun 2007 Posts: 221 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 221 | Liz,
I'm sorry to hear this latest development. I'm sure the emotions run from anger to sadness. I hope you will get some news soon, even if it isn't the news that you want, so that your family can begin to move forward instead of just standing still.
I will continue to keep your family in my prayers.
Hugs,
Joy
CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
| | | | | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | Liz,
I am saddened for you, and for Paul and the rest of the family. It's so hard to understand what goes through someones mind in situations like this, and especially hard when so many here have fought tooth and nail to survive the Beast. As I said before, draw on the massive reserves of inner strength, peace and acceptance that grew within you during Robin's struggle. You WILL come through this, and you will be O.K.
Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | | Joined: Sep 2007 Posts: 79 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Sep 2007 Posts: 79 | Liz,
I am sorry for you and your family and will continue to keep you in my prayers.
Jean
* Root for Joe *
Sister of Joe (43, non-smoker/chewer; occ. drinker). Mouth problem 3/07. Diag with Stage I 6/07. Diag with Stage IV 9/07. In EPOC at Univ of Chicago. Cisplatin/cetuximab 1/wk x 8. Then, IMRT 5x/wk x 7 and weekly chemo. Done 12/21/07. Looks good as of 4/08, 7/08, 8/08, 1/09.
| | | | | 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 |
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: 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 its over a month now and repeated appeals on facebook,television,radio and news papers,have all failed to produce one single siting.its now a case of whatever the news we want to know what happened to Paul.Robs dentists court case is approaching rapidly (sept 1st)and i know Paul will want to know how it goes,so who knows,maybe.........
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: Jan 2008 Posts: 179 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2008 Posts: 179 | Oh Liz... I know how hard this has been for you. I am so sorry. Did Paul know the court date was set for September 1st?
Dad: Age 65 Heavy smoker/drinker. Biopsy-No surgery. Cancer base of tongue/throat. "Invasive Squamous Carcinoma RRT" --Beginning 1/9/08: IMRT treatments (5X/wk),chemo pills (4/day) and Chemo IV (once/wk) PEG tube inserted 1/25/08. Treatments ended 2/26/08
JUNE 30, 2008 Officially CANCER FREE!!!
| | | | | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Oh Liz
I don't know you are getting through all this.
Have you to appear at the hearing or is it all lawyers?
I can only offer the old mantra..One Day at a Time..
Sunshine.. love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Liz-How are YOU holding up?
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Hi Liz,
Checking every day here and on facebook hoping for good news for you and family.
Sorry that at the moment there is none. Hope you will hear from Paul soon.
Luv
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | 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 | hello you wonderful lot.
thanks so much for all your messages,and to answer your questions.
No paul doesnt know the exact date of the hearing.
Yes i have to go down to London on September 1st,and give my evidence on September 2nd.Lynne was going to come with me but she cant get the time off so i will be on my own (as usual).Robs cousin david is going to meet me in London and will come to the hearing with me.Evidence from independant experts is being heard over two days and the findings determined on Wednesday 3rd September,so i will not have to wait too long.
How am i holding up ? the truth is Sue marie,i dont know how i am holding up i feel as if i have let Rob down by not looking after Paul better maybe i should have bundled him in the car and brought him home with me last month.I just don't know.all i know is that if Rob were still here this would all be so different.
Still my Granny used to say "if ifs and ands were pots and pans ther'd be no need for tinkers"
Any way i dont have time for self indulgence with my lovely grandaughters and looking out for my wonderful fellow carers lol.
There is always someone worse off even though at times it doesn't feel like it.
love 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.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Liz- I know you've probably heard this before but you are NOT to blame for any of this. People suffering from depression are so unpredictable and the truth is that Rob probably couldn't have helped that much if Paul is so sick.
Anyway, give em hell at the hearing and try to take care of yourself. It's surely going to be very emotional for you.
All the best, Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | 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,
Whatever Paul did he would have done so if you had tied him up in a room and threw away the key so don't assume any responsibilities here and Rob knows that.
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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