| Joined: Sep 2013 Posts: 94 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2013 Posts: 94 | Thank you so much for the kind words everyone, it was very nice to wake up this morning and read them. I am very grateful for OCF support.
KP5, I live in the DC area. And thank you for your advice.
To be completely fair, I did get invited by two out-of-town friends to go spend the holidays with them, but I really don't feel like traveling long distances in this condition, or like crashing their family reunions either. And also, a good number of my local friends (most in their 20's and 30's) will be flying elsewhere to spend the holidays with their families.
The interesting thing about my local friends is that, in the very beginning of this whole ordeal, they were amazing. Between the diagnosis and surgery, people called all the time. For two weeks after the surgery, when I was in lots of pain, they made a schedule to make sure somebody was with me all the time. About 10 of them rotated. I was moved to tears an thought that maybe it won't be that bad going through all of this if I had such a support system. But then, once I recovered enough from the surgery to go back to work, things drastically changed. A couple of people still remained amazing support in every possible way, especially a friend who had her unemployed father come all the way from CT to drive me to my treatments - I will never be able to repay that for the rest of my life. But the rest, well, some texted once or twice in this two months, and some completely disappeared. I am especially disappointed with my so-called-best friend. She made grand claims how she was going to do this or that for me and ended up doing nothing. No visits or phone calls in these two months. Couple of texts, that is all.
I am also conflicted about my all feelings: I mean I should be (and am) grateful for all the help after the surgery but very hurt with the lack of contact now. It is very difficult to have those two opposing types of feelings for same people.
Urgh, looks I am turning this into a therapy session. Thanks for reading. And sending lots of hugs to everyone.
36, female, left tonsil HPV+ SCC, T2N1 8/28/13 SCC in left tonsil 9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed 9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL 10/28/13 rad begins, 30 treatments, tomotherapy 12/09/13 radiation ends! 2/10/14 papillary thyroid cancer 2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst 2/27/14 thyroidectomy 3/5/14 pelvic ultrasound
| | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | You turn this thing into a therapy session any time you like. If that's what you need, that's what you get, no judging from us. Whatever you need, whenever you need it.
As much as you like dancing I just wish you could go. I remember why you can't. If you were down here, you could dance incognito all you want, we have a great club, last night about 150 members present.
My PM offer stands.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Ambra, Your experience is very common, so don't take it personal or feel your friends let you down. Even best friends going AWOL happens quite often. Doesn't ease the disappointment much. Given your cohort lives by the rules of invincibility (ie 20 somethings), it partially explains their behavior. They see you return to work and function so figure all is well and go about their bursting 20 something lives. Couple observations about my experiences on this subject. Many people just don't know what to say, how to react, or what they can offer. Too many reasons to even attempt to unwind that one. Those that did engage usually had dealt with cancer in their past, often family or friends and could relate. Those in health care were most comfortable conversing about it. Nearby neighbors, seniors, were most empathetic, understanding, and helpful. I attribute this to life experiences as well as having time to help with driving now and then. Given the epidemic of HPV in younger folks, I decided to out myself, created an online journal site, and blasted that to every email address I had. I felt if I could get just ONE kid vaccinated it was worth all the flack I would get. Doing that also put me in control over my communicating outward and always be the initiator of my status and condition. In my mind, this eliminated all doubt who needed to contact who and reach out. There's lots of disappointment as you are aware but also very freeing with no wondering, self doubts, questioning why, etc. Do note many do not feel as I do and really struggle with relationships being affected when one gets cancer. Many "best friends" are no longer, so do not feel alone. Life goes on a daily I just tried to do as much positive from a terrible situation. Don
Last edited by donfoo; 11-23-2013 12:57 PM.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | What everyone else said is pretty much true, and I have plenty of stories myself. Count on no one except yourself. When the good times, money is gone, and sickness comes, most everyone disappears, and someone you may least expect, even a total stranger, may help more than a close relative or so called friend, but they are too few and far in between. I'm staying home for Thanksgiving with my mom, again, but at least I have that, but were not cooking anything, and I have two siblings, somewhat locally, that are helping themselves elsewhere to feast lol, so I guess were not worth the trip or effort to help.
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 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im sorry to hear you feel like your friends have abandoned you. This is very common. Too often the ones who are the closest to the patient dont know how to handle the situation and begin to distance themselves. This can be very hurtful to the patient. Sometimes strangers will become a patients closest allies during treatment and recovery as former friends fade away. When you are recovered the missing friends will slowly crawl back into your life.
As far as Thanksgiving goes, do something for YOU. Think of what you like to do. Take yourself to the movies. Usually they arent too crowded on holidays. There is always shopping if you feel up to it. Many stores are open on Thanksgiving. Just be careful in crowds, your immune system isnt fully functioning so you can pick up colds easier right now. For now thru at least the next year, make a habit of frequently washing your hands and using hand sanitizer. Avoid sick people and crowds. At least its now cold so wearing gloves doesnt look so unusual.
My doc told me that I shouldnt even go to the grocery store. He explained if someone at the other end of the aisle could sneeze and make me sick. Not sure if he was joking or serious but I laughed at his warning.
You know we will always be here to support you no matter what day it is. If its not too personal, where are you originally from? 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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Ambra - The holidays are just really hard for a number of reasons, and feeling alone for whatever reason is high among them. You mentioned that you had a couple of invitations that you could not accepts. Do these friends have Skype? Maybe you could arrange a session with them on the holiday. Not as good as being there, but it would let them know how deeply you valued the invitation, and give you a window into the light at the end of the tunnel. If you can get outside yourself for a bit, it would help. I also like Christine' suggestion of doing something for yourself. As an academic, I am sure there is a book that is too expensive that you would like to have. I found Connie Willis' Blackout / All Clear books wonderful for the worst of my caregiver days. Maybe a Masterpiece Theater series of DVD's would be good. The old Caligula is wonderful, with lots of scandal and a TRULY dysfunctional set of family and compatriots. If you order today (using the OCF Amazon link) you will have them for turkey day. Maria
Last edited by Maria; 11-24-2013 10:42 AM.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2011 Posts: 269 | Ambra, I can't say much more than what everyone else already said. One thing for sure is when friends do text, make your needs known. If they don't respond, then you still have done your part in the relationship. I also agree people who never had an experience like this just don't know what to do. I'm sure half your friends are thinking they don't want to "bother" you, but are thinking about you a lot and don't realize you would love the contact. I'm sorry you have to experience this, I know it hurts. Will be in touch. xo
Nancy (53 at dx) Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs 7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo. 5/29/13 - Found primary 7/3/13 - TORS 7/8/13 - Emergency Surgery/Blood vessel burst in throat 8/9/13 - Peg in 9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck 10/14/13 - Radiation ended! 11/12/13 - PEG out!
| | | | Joined: Sep 2013 Posts: 94 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Sep 2013 Posts: 94 | I was already very grateful to find these forums on my first days here, and after reading all the thoughtful responses this morning, I am more grateful than ever. You guys are truly amazing.
About my friends possibly not knowing what to do, that is not exactly true. We have an email list of the 10 or so closest local friends to which I occasionally send important updates. So, I literally spelled out what I need, in a non-demanding manner of course. When rad started a month ago I sent out an email in which i said, among other unrelated things, that they do not have to know what to say and do, all I need is somebody who will listen. Moreover, I specified that I would love and need occasional company, as it is very easy to fall into depression when in this situation. Also, I sent out a new email last week when I stopped working, and said that if they would like to visit, I am home at such and such time after treatment ends, (which happens to conveniently be after 7 pm in the evening when work is done). I think that this is all really clear.
I will not be able to spoil myself by getting something expensive, as I am very broke with all the medical expenses. And do not have that much energy to go into crowds, especially since I occasionally get pretty strong dizziness spells, probably from the meds. But I might go to my favorite book store and spend an afternoon there. I got a flue shot last month, and frequently use hand sanitizer/wash my hands, so hopefully I should be OK.
Christine, feel free to ask. I am originally from Serbia, which used to be Yugoslavia when I was born, before all the hell broke loose. Lots of bad stuff happened, many wars etc., so I have been through some very difficult times before in my life, though of completely different nature.
Maria, you are very sweet. I will have a Thanksgiving meal delivered by a meal delivery service, and I will Skype with my family back at home. There might be some phone-calls from close out-of-town friends too, so it shouldn't be too bad.
Last edited by Ambra; 11-25-2013 09:07 AM.
36, female, left tonsil HPV+ SCC, T2N1 8/28/13 SCC in left tonsil 9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed 9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL 10/28/13 rad begins, 30 treatments, tomotherapy 12/09/13 radiation ends! 2/10/14 papillary thyroid cancer 2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst 2/27/14 thyroidectomy 3/5/14 pelvic ultrasound
| | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | Amazingly our best friends became non existent too. I was actually having a Bible study at our house with 2 wonderful women. We had been meeting for almost a year every other week. When Kevin began the process they just disappeared. No phone calls, emails, nothing. I think that hurt the most because during the year they had had some things happening that I always checked in on them about between our meetings. To this day we have not spoken. I think they are embarrassed and I think they should be so I just let it go. That's probably not the best thing to do I guess, but it's a process to get through. Most of our friends did the same thing, but we weren't that close to too many people as we had just moved here 3 years before and this is a very hard town to make friends in. Ironically people we didn't know came out of the woodwork. Neighbors we barely knew brought meals. Families from the elementary school brought meals. People we didn't know showed up on our door step with food and sometimes money at just the right time when I was trying to figure out how I was going to pay on something. I loved how God provided, but looking back now we can clearly see He took care of us the whole time through the work of Angels here on earth. I pray that some of your friends would get it together. Sometimes ya' just want to smack somebody!! Have fun skyping your family. Wish you were closer...we would be there for you!!! Kathy
Kathy wife/caregiver to: Kevin age:53 Dx 7/15/11 HPV16+ SCC Stage IV BOT/R Non smoker, casual drinker 7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11 PEG placed 9/1/11 Removed 11/8/11 Clear PET 10/12 and 10/13 and ct in 6/14 | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Ambra - So glad to hear that you are taking care of things. There are Angels here on earth, sometimes when we least expect it. The others - well, some people are just not good in crisis situations. And you cannot make someone feel what they are not capable of. They cannot give what they do not have to give.They may also have other things going on in their lives which impact their behavior. So it's best to appreciate and enjoy those that do come into your life to fill a need or bring some joy. They may only be there for a short time before they move on so the time you have with them is precious. I hope Thanksgiving will bring you some very special and joyful moments.
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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