| Joined: Aug 2013 Posts: 8 Member | OP Member Joined: Aug 2013 Posts: 8 | Hi all, my dad has Bot Stg4 and starts radio/chemo on Monday. He is in Australia and my sister and I both live abroad. We're going over there in a couple of weeks even though he continues to maintain that he wants no visitors. I'm family, not a visitor, so I intend to be there for at least some of the treatment. Anyhow, I suspect its his girlfriend who doesn't want us there, not him. So, my question: any hints on how I can be most useful and least bothersome when I'm there? What sort of stuff do people like/hate when in treatment? Would he like books? audio books? photo album? music? I guess the worst that can happen is that I really make him angry and I have to leave. Thanks for any suggestions. Deborah
Daughter of Dieter Dieter Dx 08/2013, stg 4 throat and BoT. starting chemo/radio September 9, 2013.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Debo - I like the distinction you made about being "family" and not a visitor. What a loving daughter you must be to care so much for your Dad and to want to be useful. Everyone is so different in their recovery - things can change even from day to day. Just being close by, will let your Dad know that you care. Perhaps your Dad's girlfriend is worried and just wants to be the one to comfort him and help him through his. Sometimes the simplest things can be the most appreciated - like picking up prescriptions, doing laundry, fixing a simple meal, walking the dog, etc. Maybe you could have a list ready of things you would be available to do for your Dad so that he or his girlfriend can choose what would help the most. That might at least get you a "foot-in-the-door" so you could get close to your Dad and just hold his hand or give him a hug and tell him you love him.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | 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 | Your Dad will not experience the worst part of this Tx until appx the 4th or 5th week and the worst part will last thru appx the 3rd week post Tx so those 7 weeks are the time that he will have the greatest needs but everyone can react differently to this "experience" both physically and mentally. I took this very personal and I didn't want ANYONE around me while I was going thru Tx except my wife. Not my best friends, not my next door neighbors, not my employees and not my kids. I was embarrassed that I had cancer having never been sick a day in my life. I was embarrassed I was soooo weak and was sooo dependent upon sooo many. Like a wounded bear I wanted to be left alone until it was over. If I were you I would call your Dad and let him know that all he has to do is call and you'll be there. I would make sure he and his GF know of this site but if he says he doesn't want you around I would respect that because he may be just as stubborn as I was. Respect the fact that he and his GF are the ones having to deal with this and if that's how he wants to do this then so be it. JM2C's
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I was similar to David. Being single, I didn't have anyone to go with me to most of my doctor visits, tests, surgery, treatments or anything, so I'm used to that. During treatment was worst, I didn't want any visitors, no one to fuss over me, no smiley faces trying to cheer me up, no talking, and just wanted to be left alone, sleep, day dream, no telephone calls nor went on-line. I didn't even want to think, read or watch a movie. Although I did need someone to pick up prescription meds, Glucerna, medical products. The only thing I watched was the food channel, which was easy enough. I only went outside to go to treatments. After treatment was a little different, maybe 7 weeks, and didn't mind any company being a little more sociable, and a cooked meal when starting to eat.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jun 2013 Posts: 262 | Deborah, I'm sorry you're dad is facing this but glad he's got you, your sister, his GF to get him through.
Could be that your dad and his GF worry that it's too much trouble/expense for you to come, or that visitors would mean more work cleaning up, entertaining, etc. And parents often do not want kids -- even adult kids -- to see us so weak and vulnerable.
Some ways to help: arrange housekeeping service, dogsitter, grocery/meal delivery, lawn care. If they are feeling reclusive they may appreciate you volunteering to be the liaison to friends and family posting/calling everyone with updates.
He is lucky to have you!
M
53 T3N2aM0 HPV+ 5/26/13 discovered painless superball-sized lymph node in neck 6/26/13 DX SCC R palatine tonsil 7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes 9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses 10/16/13 Treatment ends Dec 13 Ulcer appears at surgery site Jan 17 Biopsy -- no cancer! Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | Joined: Aug 2013 Posts: 8 Member | OP Member Joined: Aug 2013 Posts: 8 | Thank you everyone for your comments. All of them are really useful. Any information is good! I really appreciate your frankness is talking about this. I was very surprised at your comment, David, because it just hadn't occurred to me that someone might feel ashamed or embarrassed. It's an entirely logical reaction. I felt that way when I needed my adult diaper changed by my husband after a caesarian birth. It just hadn't occurred to me that Dad might feel that way now. I'm feeling some trepidation about the trip, but I do think I can be useful. Even if its just picking up the meds, or turning his phone on silent if that's what he wants.
Daughter of Dieter Dieter Dx 08/2013, stg 4 throat and BoT. starting chemo/radio September 9, 2013.
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Debo,
As a highly independent 40 year old, I felt a bit smothered by my family who stayed with me post-surgery. On the converse, I was really disappointed that some of my friends didn't even bother to call and check on me. I know, there's not much logic. It's a bit of balancing act, as I was struggling after the surgery (I was carrying 40 pounds of fluid on me, and looked like the goodyear blimp, fit into nothing except PJ's so I was dressed for bed anytime people came by, which is embarrassing as a grown professional woman).
Try and think about what you want when you are really sick with the flu. You want people around sometimes to make tea and toast, but not all the time, because you're exhausted and feel gross.
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | I have always told my boys "when it hits the fan, some people you thought would never leave your side will be nowhere to be found. Some people you would never expect will stay with you through it all". I had a dear friend that was incredibly freaked out by my illness and disappeared until I was well. I also made some friends that I know to this day I could call at 2am and they would come running.
I'm still friends with the guy that left but its different. There's blessings in learning about both.
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | 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 | My next door neighbor held weekly pray meetings in her house; my son cried and my oldest daughter demanded to see a copy of my will! Go figure.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Well, David - looks like you had all bases covered. Your neighbor took care of making sure you had prayers going forward, your son sounds like the tender hearted type and your daughter must be the practical one - probably all qualities your children inherited from you which are good to have in a crisis situation. And with the excellent caregiver-wife you have, no wonder you came thru with flying colors!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
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