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Mon, Dec 4 2:28am · Talking Frankly about Living with Advanced Cancer in Cancer

that is a good suggestion !!!!

Mon, Dec 4 2:27am · Talking Frankly about Living with Advanced Cancer in Cancer

Thank you Teresa knowing there is someone out there that understands REALLY GETS IT! is a comfort. Not that I would wish cancer on anyone but we all do belong to the same club, sometimes we need support and sometimes (if we are lucky) we are able to support others. helping someone get thru a rough day can help to make us feel worthy, to feel needed and sometimes that is all we ask. To everyone out there have a good night (you should be asleep !)

Sun, Dec 3 6:53pm · Talking Frankly about Living with Advanced Cancer in Cancer

thanks for your encouragement I also had a Dr./resident that the first time he looked at my file was as he walked into the room so I can connect with your feelings there. I also have insisted on a new oncologist, since my old one left the clinic (loved him) I have gone thru three. I know what I need and won’t settle for less. My last appt. I had a sub as my Dr. and wasn’t impressed. Research is my middle name especially since I have a very rare cancer, most dr.s don’t even know of it, if I wanted to find out everything there was to know and where the best treatment was I had to do it myself. I already knew exactly what research study/trial they used to determine what drugs they tried the first time. Still don’t know what I am going to do but I am waiting to hear what my chemo oncologist will say and maybe he and I can discuss in more detail my scans and the radiologists findings. Thanks again for EVERYONES support

Fri, Dec 1 6:17pm · Talking Frankly about Living with Advanced Cancer in Cancer

Just had my mid-way scans for my chemo and am trying to figure out what is going on. Was told if we saw no improvement they would not suggest the continuation of the gemzar and xeloda. What the scans showed was no shrinkage and many areas had some growth BUT Dr. said to continue chemo treatments. I have to take what he said as truth as he showed me only one scan and sped through the discussion. I was still in some shock and a lot of disappointment to take in all he said. He showed the most enthusiasim when I said I would take part in a study.
When I asked what the next step would be if we still saw no improvement and he said try a different chemo regiment though he didn’t know what. I am not a guinea pig for random drugs with no track record !!! I have made it clear I chose quality of life overall. The Dr. seemed to think I was handling side effects very easily which is not the case it just looks that way. I constantly hear how good I look which is nice but people then take for granted I feel good which is far from the truth some of the side effects are quite nasty and I am afraid how long they will take to go away. I present myself well when I do go out and I just don’t go put when I can’t appear healthy.But anyway the Dr. didn’t seem to want to pursue the severity of my side effects and as I said I was in a bit of shock and surprise. Sorry I am not usually so whinny but I am still deciding what to do. Thanks for listening

for those that don’t know me ( I haven’t been on in a while) I have metsastic Thymoma

Mon, Sep 4 12:09pm · Talking Frankly about Living with Advanced Cancer in Cancer

I am sorry to hear of your loss Scott. You sound so strong and centered, someone gave me a plaque “we are as strong as we need to be”. using that logic I am a champion weight lifter ! lol I have a sister that set up a meeting with one other sister and we had a fun weekend but during that weekend she said “this could be the last time we are all together” which was true but I didn’t know when we said goodbye that it was GOOD-BYE . I only hear from her once since that weekend (3yrs ago) and that was about a month after my daughter died and she told me “I should be over it by now”.
As we know you never get over it.

Why are people that way? I don’t know……but I suspect fear. Fear they will say the wrong thing. they get scared when they get so close to death so they back away. and then there is the fact many of us (me) build a shell around ourselves and we appear fine, strong even So there is no need for them to offer comfort
and last They don’t want to remind us of our loved one !!! WHAT???? We will never forget…I think of her first thing when I get up and still I will turn on her phone to hear her voice….I don’t want to forget.

My biggest fear is what will happen to the people I leave behind . I try to find peace thru God
I also have Fantastic friends I can talk to about most things.
I tell myself to get over it !! I am not that important….. life will go on …LOL
hope to see more of your posts !
Thank You for the support !!!!!!!!

Mon, Sep 4 4:54am · Talking Frankly about Living with Advanced Cancer in Cancer

Yes the guilt I have that. The one time I tried to express how guilty I felt being alive my friend just slammed me down, thought that was nonsense. But it does seem that some people do expect me to be dead already, so I feel guilty I am disappointing them ????? No it is not that bad but as others die I do feel why not me? sometimes more survivors guilt than others. I made a friend at CTCA and we were sisters almost ! I loved that girl. We made Christmas treats together in our hotel (until I was rushed to the hospital) but after we went home we would talk on the phone constantly until her cousin called to tell me she had died she tried to call me before they put her on the respirator. I still feel guilt about her death I am already supposed to be dead ( several times ) but God always pulls me back and that leaves me with another question…. Why? what is his plan for me that I am still here when so many I have cared for are gone.
I am not yet 60 and I have buried both parents (15-20yrs. ago) two brothers and a sister and friends and the worst blow of all ,from which I will never heal, my daughter. I would give my life anyday to have her back.

it is 4 am I should try to lay down for a while again.

a quick funny….has anyone else had this happen? I was going into the grocery store when I bumped into an old friend I hadn’t seen in a year or so……….the look on her face …priceless…..she even started saying the words “you’re supposed to be dead” but caughgt herself part way thru !!!!!! I just laughed and said I must look worse than I thought LOL

Mon, Sep 4 3:35am · Talking Frankly about Living with Advanced Cancer in Cancer

Thanks for the invite to this board Colleen. I have been feeling depressed lately (which is not usual)and talking may be just what I need.
Has anyone else experienced when you have a friend who has a relative dying from cancer and would I please talk to them. I am always more than willing to help but frightened at the same time. What if I say the wrong thing ? people comment all the time that I seem to have it all together and I have such a great attitude, sometimes that is true the rest of the time it is the mask ( and I KNOW you know what I am talking about). It is a lot of responsibility. It is also difficult because it stirs up all those feelings I keep at bay. These conversations are always different but always filled with tears and laughter and longing and God.
But if anyone else has had to do this , how do you feel afterwards? How do you deal with your own feelings?

I have so much more to say but that is another topic.
I have my scans this week and see my oncologist (always nerve wracking)
I see my gyn doc “watching” a problem
I see my pulminologist next week and from my breathing I feel the news will not be good

P.S. this is the 2nd person from this family I will have had the “death/Life” talk with
a reminder we need to thankful for our blessings

Sun, Aug 6 4:19pm · Anyone out there with Thymoma/Thymic Carcinoma in Cancer

Yes I will. I have two days of appointments first week of Sept. and see my pulmanologist Sept. 27th.