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Joined: Jun 2007
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Patient Advocate (old timer, 2000 posts)
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 5,260
It sounds like some of the good friends are doing their best to not get emotionally involved. Some people do seem so weird - to want to talk trivialities while we fight to stay alive. It seems we all have friends, or those we thought were our friends, but when it comes down to fight time, they run like hell so they get no bruises. I'm just glad I have a daughter, Lori, and BarbT on my side. I sure needed them to help me win this one and we did it again I hope. I hate to hear about some minor obstacle from people, but do think it makes us better people for listening.

Last edited by Brian Hill; 03-08-2008 05:10 PM.

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: 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 wife is always on me about spending time on this site because she can't and I would never hope that she could, understand that I want to tell people that are about to go through what I did or are already in the throws of Tx that everything will be Ok because I know that they will feel better if they hear from me vs their spouse, etc.


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 2008
Posts: 341
Platinum Member (300+ posts)
Platinum Member (300+ posts)

Joined: Feb 2008
Posts: 341
You guys are all so amazing and I just can't say enough how blessed I am to have found this site. You all of course really get it because you are living it and I am someone who feels really great when my thoughts/fears/anger/etc. is validated and you validate me!!!!
I am already seeing the other people step-up and help, we are really blessed to have this happen while we live in an area that I grew up in. Old friends and people I thought of as acquaintances only are the ones really stepping up. And of course family is doing great.
Liz - I remember all the people that were there for me and dad when mom was sick. Then we had the funeral and then never see them again. One of the friends - her best friend of 45 years (I'm 35) who I thought would still care about me and dad - yeah right. Didn't call or visit, didn't return our calls, didn't come ot my wedding shower, weddding, baby shower, etc. My mom had thrown all three of her chhildren both wedding and baby showers because they were such good friends. Sometimes people in life just suck!!
But hey, I digress again. The kids are off for the weekend and Dan and I are having some couple time, resting, and I did some "fun" shopping. So I really feel rejuvenated and ready to face a new week of doing it all again.
Thanks again everybody!!!!! And especially you Jim - I always smile/laugh when I read your posts and it's great to have you back. Even though I'm still new you seem like the glue here that holds alot of people together.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

Joined: Sep 2007
Posts: 61
Supporting Member (50+ posts)
Supporting Member (50+ posts)

Joined: Sep 2007
Posts: 61
Michelle,

Hopefully your friend will step up to the plate, and soon! That has been one of the hardest things for Mary, to realize that some people she thought were her closest friends just disappeared into thin air. Or worse, offerred to help then didn't come through when she needed them.
It IS scarey to step up, you're not always sure you are saying the right thing or giving the right advice. It is hard to watch a friend go through all these treatments and the side effects and wonder "Will she make it?". I valued my friendship with Mary too much to disappear, and I never would have forgiven myself if I didn't help. My husband, whose father died of colon cancer years ago, said "just be there and LISTEN-you don't have to have all the answers". Hopefully your friend will feel the same way after she has a while to think about it.
And as I was reading Liz's comment above about people thinking it was "catchy", it did make me think about when children are aware of all this going on around them, they need some support as well. My 7 year old became pretty clingy after my friend was diagnosed, and when I asked if everything was okay he asked me if I could "catch" the cancer from Mary by being with her! Never even crossed my mind he would be thinking that.....
This is a wonderful place to vent, to get support, and to get honest, helpful answers to your questions and concerns. I hope it helps you as it has helped me.

Liz


CG to friend Mary. SCC Stage IV-A of rt. tonsil, mets. to lymph node on rt. DX 06/07,tonsillectomy 08/07, Chemo Cisplatin, Taxotere and 5FU X3 cycles; RAD completed 1/20/08 RND scheduled for 3/08. 54yr.old, NS, social drinker.
Joined: Feb 2008
Posts: 27
Contributing Member (25+ posts)
Contributing Member (25+ posts)

Joined: Feb 2008
Posts: 27
Michelle,

I came on to this site a few weeks ago because my mom was diagnosed with cancer and I wanted to research as much as I could. While doing that, you caught my attention. Maybe it is because we are the same age and I have young children too. I'm not sure but I have been, I guess you can say, tracking Dans progress and yours. I have wanted to post to you but have been hesitant. My heart goes out to you because I know your world has just been turned upside down. Your strength is truly inspiring.

I am experiencing something similar with my best friend. It is very hurtful but I think she is trying to protect herself in some way. If it does continue, I will be honest with her and tell her how I am feeling. I would hate to lose a lifelong friendship because I didn't communicate what I needed and expected from her. Maybe you should be honest with your friend and tell her how you feel. It can't hurt and maybe you'll feel better after you do. What do you have to lose.

I do have a sort of funny story about one friend (who I am not very close with anymore.) The day my father in law died of lung cancer (not the funny part) I was extremely upset. My husband was with his mom and brothers and I was home alone with the kids. I was really upset and needed a friend so I called one. I was crying and pouring my soul and while I was in mid sentence, she said she had to go because her sons ring pop broke and he was very upset. I was stunned. I actually stopped crying and started laughing. I mean, how cold is that? Needless to say, that was the beginning of the end of that friendship. My point is, people who have not been faced with illness just don't know how to react.

I'm sorry I am going on and on. I wish you and your husband the best and will keep you in my prayers. My journey will really begin on Wed. when my mom has her surgery. I hope I will have your strength to get through this.

Denise



CG to Mom. Dx 2/08. Mucoepidermoid carcinoma in the minor salivary gland in lower lip. Surgery 3/12/08. Margins clear but not clear enough. Surgery scheduled for 4/23/08. Surgery Successful. Clear Margins
Joined: Apr 2007
Posts: 794
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Apr 2007
Posts: 794
Hello Michelle,
I went through some similar feelings as what you have written, I've lost family, helped in being a CG, and some of the the remarks people made were so ... I'm going to just say ridiculuos. I think they need to find something to say to console themselves that they have 'helped' in some way. I felt like I lost a lot of friends when this all started with my mom. Some people have come back around, but mostly, I think it is me who has changed. I used to get pretty bent on some of the the remarks--honestly I guess i still do since reading what you wrote struck a cord inside me. You sound like a strong woman who has been there, done that...and you have all of us. I would have been so lost if it weren't for friends here on the OCF. There is no one like them, they give it to you straight and with such love and courage, what they have been through, and yet they come on and help everyone.
I know my mom still has quite a battle ahead of her, she's got us, my family, and all of you, though she doesn't use a computer--yet--my younger one is determined to 'hook her up' and teach her how to type. It is here, in this family, that I find my strength to keep pushing.
Donna


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: Jan 2008
Posts: 706
"Above & Beyond" Member (500+ posts)
"Above & Beyond" Member (500+ posts)

Joined: Jan 2008
Posts: 706
Ladies- I have another one of those "Did she really say THAT" stories. One of my so-called oldest friends called me when my husband first came home from the hospital from his 12 hour surgery. He had been in for 2 and 1/2 weeks. She asked if I wanted to have lunch but I was waiting for a delivery of the cans for my husband's PEG. I asked if she would come to my house and we could have lunch here. She said that she really felt like going out and would call me another time. Still waiting for the call. I would never have believed it since i had been there for her through her divorce. Anyway, I feel like I have made better quality friends here on this board. Stay strong ladies! 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
On a positive note, my next door neighbor, who is very religious, started having a weekly pray meeting at her house to pray for me. My wife & I don't belong to her church and we seldom go to our church. She would even call me up each week asking if I wanted to come and sit with them. That was the last thing I wanted to do but in spite of me she must have made a compelling case and I will never forget her gesture not to mention the total strangers that went to her meetings to pray for me.


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 2008
Posts: 341
Platinum Member (300+ posts)
Platinum Member (300+ posts)

Joined: Feb 2008
Posts: 341
It is so nice to not be alone in this.

Denise - I have approached my friend (via e-mail) because we have not had a spare day to try and visit people and told her from the heart that I needed her, etc. and that I felt like she was backing away, etc. and I have not heard from her. I do know from a mutual friend that she got the message though.

David your story is wonderful. Some of my sister-in-law's friends have been sending me notes and scriptures and telling me they are praying for us in their Bible study classes. It is amazing the strength of prayer and conviction and compassion that strangers can have for us.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

Joined: Feb 2008
Posts: 27
Contributing Member (25+ posts)
Contributing Member (25+ posts)

Joined: Feb 2008
Posts: 27
I'm real sorry to hear that. Well, the balls in her court. Hopefully she'll come to her senses sooner rather than later.


CG to Mom. Dx 2/08. Mucoepidermoid carcinoma in the minor salivary gland in lower lip. Surgery 3/12/08. Margins clear but not clear enough. Surgery scheduled for 4/23/08. Surgery Successful. Clear Margins
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