sallys Posted November 15, 2007 Share Posted November 15, 2007 I am one who has worked as a volunteer with Hospice for 5 years with cancer patients and here I am with cancer now and after being around it for all that time one would think I would know what I am feeling. I am having a problem with my feelings about the whole situation here. I really don’t have anyone to talk to per se’ about them. The families fear of losing me is too great for me to really open up to them. All in all…my biggest problem is I don’t know what I am really feeling. Not sure whether I am living in a dream world waiting to wake up or refusing to accept all or this is someone else, God forbid, better me than someone else here. I seem to be in a somewhat limbo world and alone, with my true feelings. I believe God’s will in my life will be and I guess not knowing for sure what His will is for me is scary to a degree. But I know His will is perfect and whatever will be is whats best for me from God. I have a pet scan coming up the 27th and I think I dread that, just not sure what emotions are there either. I don’t think it is denial, just sort of a limbo feeling. When I first went back for a pet scan after my lobectomy I was so sure there would be no cancer and all would be normal as normal can be with all the post op pain. And I really felt like the boom had been lowered on me when it came back positive for cancer in now the upper left lobe, the same side of the lobectomy and lower right lobe. I also have 2 non malignant tumors in the neck, submandular. I was stunned for sure and still sit here in limbo not sure what I’m feeling. Everyone in the family loves to hear I feel fine, doing better etc…. when I’m not. I know that I am scared of the cancer and the power it has over one but still feel like I am in a daze. Unlike most I have not kept good records and dates of all my reports and doctors. Now I wish I had. I started a journal but didn’t keep it up because of all going on in our lives at that time. Whatever could go wrong at that time did! Question…does anyone else feel this way? Like they are in an unreal world or dreaming and can’t wake up? Question 2: I have pet scan coming up for the lungs Nov. 27th…will this also show whether the cancer has spread to the ribs or not? I am having so much rib pain and it seems to get worse. Or do you have to have a separate scan for rib bones? God bless you all….this site is a God send and its so good to talk to someone and let it all out…..Sally Quote Link to comment Share on other sites More sharing options...
Connie B Posted November 15, 2007 Share Posted November 15, 2007 Sally, first off, we ALL go through the Pre-checkup jitters! Hate 'em, Hate 'em and Hate 'em no matter what!! I've been doing this for over 12 years and I still get a little jittered to this day. Truth is, it does get better as years go by. As for your feelings. Well, for me I walked around the first 2 years in TOTAL LIMBO type FOG! Thought for sure I was dying and didn't know HOW I was suppose to live! Then one day I woke up and said to myself: "Holy Crap I'm going to LIVE, so I better start living while I still can" It was a LONNNNNG two years, not only for me, but for my family as well. I never did know how I felt during all that. I was UP then I was DOWN, then I felt Alive, then I felt GUILTY for BEING ALIVE, it just was craziness and an over worked brain trying to figure it all out. When I discided to live, my entire life did a 180 turn around and I was back in the human race for life again. My family was happy to have me back again. As for Records, you can always ask for your medical reports from your doctor's office. Just make it a practice when you go to the doctor to say, " I would like a copy of my reports and the doctor's reports from today please!" They are yours for the giving. It's a tough journey of emotions, but having others to share that with, REALLY HELPS! Back when I started my journey, we had NO ONE! Hang on, you'll get through this too! We're here for you! Quote Link to comment Share on other sites More sharing options...
Rose1953 Posted November 15, 2007 Share Posted November 15, 2007 Your feelings are so much like mine and I am waiting for the day that they are not so confusing - like the morning I woke realizing that my lobectomy site wasn't that painful anymore. I applied for Social Security Disability this past March and was denied. My doctors told me to hire an atty and fight it. So I did. But will I live long enough to see the administrative law judge in 2 years?? As part of this I went for psychological help and have a script for Prozac. I hope to better be able to stomach the "my, your throat must be sore to sound like this" or the " oh, but you are looking so good" comments without giving a nasty reply. There are days where it takes my all to just get out of bed and get dressed. Thank God for my husband. I can share most of my feelings with him but, like you, not all....One of us needs to be fearless.... Hang in there, share your fears, we'll listen and respond and validate them. Like John Wayne said: "Courage is being scared to death and saddling up anyway" Rose Quote Link to comment Share on other sites More sharing options...
JB Posted November 15, 2007 Share Posted November 15, 2007 Sally, I have said before that after Col's dx, i walked around in a fog for almost 6 months. I mean a fog. Just went through the motions. I graduated from the fog to limbo, and have been there ever since. It still feels not real, however it is our "new normal". On the days we can pretend it's not there, we do, and on the days we can't we rest and recover, cause tomorrow we'll get to pretend it's not there again. I would certainly agree that I have a different "state of being" than I did a year and a half ago. I would venture to guess that no amount on hospice experience, or even any medical experience even oncology can prepare you for when it hits you home. At the end of the day you were always able to remove yourself from the situation. You knew what they were feeling, but you weren't feeling them. It's a whole different ball game now, at least in my opinion. I wish you all the best throughout your journey. Quote Link to comment Share on other sites More sharing options...
Patti B Posted November 15, 2007 Share Posted November 15, 2007 Sally - This is the hardest fight you will ever fight, but you CAN do it!! In the beginning, I too was in a fog. Cancer can't happen to me - only other people, right?? And a year later, I still have my days when I just cannot believe this has happened to me. The feelings never go all the way away - its still the first thing I think of when I wake up in the morning and the last thing I think of when I fall asleep at night. But the feelings of helplessness have gone away and I truly do believe that if you BELIEVE you can fight this monster and win then you will. I will remember you in my prayers - keep us posted as to how you are. Patti B. Quote Link to comment Share on other sites More sharing options...
Patkid Posted November 15, 2007 Share Posted November 15, 2007 I am so sorry for your dx. I will pray for you and your family Pat Quote Link to comment Share on other sites More sharing options...
sallys Posted November 16, 2007 Author Share Posted November 16, 2007 Thank you all for your words of wisdom...it is so good to know that I am not alone here with these feelings and that they are somewhat normal after all! And I am a cancer survivor, this is positive thinking as I have survived through the surgery and the chemo...a survivor of 1 yr. 2 months and plan on keeping on, keeping on. Just have to get this upcoming pet scan out of the way and am planning on good news to come with it and if not, then I will handle it. Even better now that I have others to share with, the long lasting side effects etc... and understand them better too. I am walking the road to recovery, though it may be tough there is a light here to work towards and know if I have a bad day I can come here and let it all out. I really don't have much to gripe about, just understanding all going on, I am blessed, very much so and I thank God for each new day. I know the chest pain drags me down at times because it is never gone and gets to a 12 on a scale of 1-10 but with the new meds it does go down to a 4 or 5 in between doses. That is a blessing. The biggest blessing of all is this is 1 yr. 2 mo. later since my first diagnosis...I like the positive thinking that I am a cancer survivor!!!! All praise and glory to God! God bless you all, my prayers are with you too!...Sally Quote Link to comment Share on other sites More sharing options...
Muriel Posted November 16, 2007 Share Posted November 16, 2007 Sally, my PET scans have all been from the base of my skull to thighs. If yours is the same then, the ribs will be included. It must be hard to wait till the 27the for the scan. How soon will you get results? Muriel Quote Link to comment Share on other sites More sharing options...
sallys Posted November 16, 2007 Author Share Posted November 16, 2007 Hi Muriel...I will get the results from my scan the next day. I always go to the hospital and pick up the report before I see the doc. I will see my onc on the 29th. The hospital is very good to me as they will call me as soon as they get the report in, they are pulling for me too! I meet so many nice folks through all of this. Hugs and prayers, Sally Quote Link to comment Share on other sites More sharing options...
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