| Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Delay, sorry that your father lost the fight, my condolences to you and your family.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Nov 2014 Posts: 66 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2014 Posts: 66 | Trying having him spit right before he lays down and maybe using a lubricating throat spray or drops to suck on. That mask that they snap on, think of it a super hero uniform or being shipped off into space. They played music during my radiation, I started out with light soothing but in the end I wanted loud and hard. It made me feel so much better.
After radiation and chemo, he's going to feel worse before he feels better. The two weeks right after and usually horrible and then slow climb out but not that slow. It's different for everyone.
Make sure he takes good care of his skin.
HPV+ P16 positive squamous cell carcinoma
Oct 2014 found neck node lumps Went to Oncologist (TNBC) Ultrasound 2 CT Scans - body/head and neck Needle & core biopsy Pet Scan Biopsy to find primary w/ anesthesia - failed Second Opinion found primary & biopsied Biopsy confirmed HPV+ P16 Squamous cell carcinoma Radical Neck Dissection 11/22/2014 32 lymph nodes removed - 3 positive Ported 12/29/14 Chemo and rads to start January 5, 2015 cisplatin weekly 40 mg/m2 Rads M-F for 7 weeks
| | | | Joined: Mar 2015 Posts: 71 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2015 Posts: 71 | Thankyou everyone for your kind words xx di I hope you are ok you've not only had this horrible disease yourself but now have to watch your dad suffer I really feel for you xx I'm going to look into helping family's who are going through similar x throughout this what I have realised there's not much support and sometimes you just want to talk to soneone that understands I hope I can go something xxx
Father 60 years old Diagnoised oc jan 15 Peg fitted 27/2/15 Full tongue glossectomy reconstruc surge , Lymph nodes and glands out 5/3/15 Rt 14/5/2015
| | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2014 Posts: 79 | Thanks Delly , one day at a time . Xxx
Di 47 none smoker / drinker
T4 SCC left tonsil 1 Cistplatin,30 RAD finished treatment on 4/12/2013 Trismus First MRI scan appears clear TX NG tube 9 weeks acute vommiting, syringe driver 9weeks 2 month checks | | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | I am so sorry for your loss. Its horrifying and sad to lose a family member - particularly a parent... hugs and blessings to you and your family.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2015 Posts: 71 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2015 Posts: 71 | Hi di how are you doing how is your dad xxx
Father 60 years old Diagnoised oc jan 15 Peg fitted 27/2/15 Full tongue glossectomy reconstruc surge , Lymph nodes and glands out 5/3/15 Rt 14/5/2015
| | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2014 Posts: 79 | Hi Delly , My dads very poorly deteriorating a little more each day . He was so positive at first determined and hopeful , but over the last 2 months as the disease has progressed he's gradually going down hill before our eyes. He's so frightened he won't actually say that but we all see it and it's difficult to know what to keep saying . My dads always been a 'mans man' but he's stuck with 3 daughters. I'm the youngest , one sister is deaf with a learning disability and the other lives in Kent and has secondary progressive MS, so I'm doing the bulk of everything with my mum of course but she's really not managing . Bless her she's trying with every kind of food but he's just not interested the tumour is so large 39cm at diagnosis blocking the opening of his oesophagus the stent as prolonged his life but he coughs constantly and days he has a full feeling and feels sick but insists he has not much pain . But that's my dad I think he sees it as a weakness . He was riding his mountain bike at 72 up until January this year , so it's all been a massive shock . I can't help but feel he was so worried about me that he ignored his own symptoms he ignored his own. I remember when I was very ill he use to say ' if only it was me ..... Let me take it from you ' heart breaking Delly . Sometimes I want to just hug him but he's not that kind of a man ever been a demonstrative man but he knows I love him and vice versa. You think I would just be able to go and do it but I can't for some reason . He can't bear anyone to be upset around him so I have to be composed when I'm there and break down the minute I drive home . He was given an average of 3 weeks on the 13th June this year ...... But he's still here , my mum says he's dying in front of us a little more each day . Macmillan nurses involved but that's it , he never even went to Christies we were told there's nothing available for him at this late stage. I hate to think what he's thinking I try to imagine how he must feel and its destroying me . You know you've been there and I think the way you supported your dad and how you pulled out all the stops for him was remarkable , I feel so helpless . Any way how are you and your family ? I think about you often , one big extended family here aren't we , sharing our stories and advice ? Would be lost without this forum . My dad helped me financially after I was ill nobody would touch me with a new mortgage , I did have critical injuries cover and my existing one got paid off thank fully but I wanted to move closer to all my family and the area is much more expensive . Dad gave me the money no questions asked and insisted I reduce my hours at work as it's been a long recovery period for me , I'm still not there yet but doing my best . He's such a decent man never asked for much and lead a clean life so unfair . Phew that was a bit of an off load , sorry ! Sending you big understanding hugs xxxx
Di 47 none smoker / drinker
T4 SCC left tonsil 1 Cistplatin,30 RAD finished treatment on 4/12/2013 Trismus First MRI scan appears clear TX NG tube 9 weeks acute vommiting, syringe driver 9weeks 2 month checks | | | | Joined: Mar 2015 Posts: 71 "OCF across the pond" Supporting Member (50+ posts) | OP "OCF across the pond" Supporting Member (50+ posts) Joined: Mar 2015 Posts: 71 | Or di I'm Absolutly heartbroken reading this x I no exactly what your feeling :(( I'm so sad for you I can only imagine what your dad is thinking x one thing I will say is just hug him my dad was so like yours never said he loved us was a mans man never wanted to trouble any one x but then became so scared and do vunerable and wanted me to lie hugging him on the bed at Christies or hold his hand ,:( I used to Tx that I loved him and he'd say it back  xx I wish I could help you in some way but Iim hopeless I cry all the time I dream about him every night and I look for signs he's ok :(( it's awful and I can only hope your dad doesn't suffer for much longer even though you don't want to let them go it's so creul for them to live like that xxx I really feel for you my heart breaks for you and your family xxx be strong di I also couldn't cry in front of dad he hated making me upset so I think all my tears fall now every day xx I have a letter my dad wrote day before he died but it's not clear as the sedation made him wrote over the words but it says something like I'm do sorry this happened you done great something bout home and then all the best dad :(((( I wish I knew what it said I keep it with me and I just wish I could ask him :((( xxxxxx
Father 60 years old Diagnoised oc jan 15 Peg fitted 27/2/15 Full tongue glossectomy reconstruc surge , Lymph nodes and glands out 5/3/15 Rt 14/5/2015
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