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Seeing Onc Tomorrow and Nervous

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Ugh. Haven't seen her since September when I had to stop the chemo because of getting septic shock due to (probably) the chemo irritating my colon and it allowing 4 different colon bacterias into my bloodstream. I had a ct scan in October that showed that the chemo did shrink the mets a bit except for the biggest one but I missed the last two sessions due to being in the hospital with the septic shock. It's taken me months to get strong enough that I think I could go back on chemo so I booked in to see her.

I had my CEA checked at the last blood test, done last week. So I don't know if she's going to want me to go right back on chemo or have another ct scan for a baseline or what's going to happen. The thing is, as most or all of you, I hate going to see her and get tests because it creates so much anxiety. I don't really want my results. I'd rather bury my head in the sand and pretend I don't have cancer. Going to see my onc puts it back in my face. Just being at the cancer centre is depressing. I hate that I belong there. I always sit- my onc is a minimum of 45 minutes wait, usually and hour and a half wait- and think about how the place where I'll probably die is in the floors above me.

My husband drops me off and finds something to do because the hospital is having it's parking lot rebuilt and there's nowhere to park unless you get there before 10 am, my appointment is at 2:45. I know this chemo works and the rash isn't bad but I hate having the rash and havng to go out in public looking like I have a disease. 

I'm happy to be alive even if I've never felt normal or back to strength for a single day since I first had chemo before my surgery. I just hate how this goes on and on. 

I'm unloading here because you are the only people who understand what it really feels like. The fear, the anxiety, the sleepless nights, the worry, the tests, the needles, the side effects, all the ugly crap that goes with living with cancer. 

Thanks for reading this. It helps just to post about it. 

Hugs to all of you and may they find something that really does help soon.

Jan

abita's picture
abita
Posts: 605
Joined: Dec 2017

It isn't the exactly the same thing, but I too have that feeling when getting results. And I adore my surgeon and oncologist. I completed my first 4 infusions, so had the ct and pet scan for my liver surgery. I know I have to get the surgery, known for months. My primary tumor was removed as soon as it was found as was an emergency to get it out immediatley. Nonetheless, after seeing them, and setting the surgery date, I kind of lost it on the subway home. How is this happening to me, how did I get here, how is this real, fear of surgery, fear of the future, fear of no future, etc. And my oncologist was so positive, so it didn't come from them. He was excited at how the tumors shrunk in volume, the uptake was reduced, I have fatigue and cold sensitivity, but other than that, handling the chemo well. And still, sitting with them, seeing the scan of the tumors, seeing the sketch of what will be removed, hearing how bad off I was when I was first admitted to the emergency room, just made me start crying. And I even feel like ater they are removed, the last 8 infusions will be so easy knowing that all my tumors are out.

Annabelle41415's picture
Annabelle41415
Posts: 6179
Joined: Feb 2009

First of all hugs to you.  It's got to be so hard going through this time after time.  My husband was a rock with me going through all the troubles that faced me and it sounds like your husband is right by your side.  My anxiety level was always high right after having a scan and then getting the results so know what you are going through.  I'm praying that everything goes well tomorrow and you get great results.  We are here for you as you are right we know what you are going through and we, here as a family, know your anxiety, feelings, fears, and frustration.

Hugs!  Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 491
Joined: Jul 2016

Hi Jan.....nice to hear from you. Keep on going and do the best you can. My thoughts are with you.

Kazenmax's picture
Kazenmax
Posts: 349
Joined: Feb 2016

Jan,

I go see my oncologist tomorrow too. I'm very anxious as well. For the last week I've woke up at 3:00 a.m. and not been able to go back to sleep. I think of everything that could be wrong.

It's been about 3 weeks since I read my CT scan results that showed 2 nodules on my left lung. I've tried to believe that it will be nothing but either way I hate it. I'm afraid that the oncologist will want to wait and see and do another scan which delays everything and then again i'm afraid he will want to immediately do something.

Good luck. Hopefully we will both be ok.

 

 

 

BRHMichigan's picture
BRHMichigan
Posts: 368
Joined: Jul 2017

Jan,  you are so right that people on this board understand. I'm getting so accustomed to getting bad news on my scans that I try to expect it! It kind of helps alleviate my anxiety when I prepare for the worst. 

I find this is so hard on my husband and children. Maybe even harder for them than me! My diagnosis was just last May, so I can't imagine dealing with this year after year.  I am hopeful that it will get better. I remember you posted once about having good days and maybe even an occasional good month. I really live for those good days. But I understand your exhaustion, as some days I can't fathom suffering like this for years.

Woodytele
Posts: 163
Joined: Apr 2017

i think we all can sympathize with you.  I never sleep well the night before my appointments.  You know that the news is almost always bad, and you start to associate everything about the hospital in a bad way.  I hate the smell of the hand soap, the antiseptic smell of the floors, everything., I can’t eat anything at the hospital anymore, ... I totally feel what your saying.  

Worriedchild
Posts: 56
Joined: Dec 2017

its 3:46 am at our region

i cant sleep have to see oncologist with my father’s scan 

need prayers

beaumontdave's picture
beaumontdave
Posts: 992
Joined: Aug 2013

Being a reader help alot with all that waiting. I always had newspapers, magazines, books along to focus on during Cindy's and my appointments. I could almost always lose myself a bit, sometimes sharing it with her, though after a while she got hooked on sudoku. Sometimes the anxiety got up enough that I couldn't remember what I just read, so I'd slowly pace the room. I hate the exam rooms just because it was seven small steps, corner to corner, and turn around. Coping with stress is a big part of this road we're on, hope you find what works best for you, Jan.............................................Dave

plsletitrain
Posts: 253
Joined: Jul 2017

Good luck with your appointment.  I totally understand how you feel, I sometimes have to drag myself to go see my doctor and take the lab tests, etc.  We all know the drill.  Is there anyone who actually enjoys going through these endless appointments, tests, ect. ?  And there's the chemo to top it all.  Sigh.  

You are in my thoughts.  God bless you.

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thank you all for your support, you guys are wonderful! And Dave, I bring a book every time I go. Hour and fifteen minute wait today but didn't seem too bad with my book in hand.

So here's what happened. We went over my ct scan results from October where it showed the chemo shrank 3 tumours out of 4. The one that had no change is the biggest one. My onc pointed out that it's the one they've never been sure is cancer so that would explain it not changing when the others did. So that gave me something to hope for. It's the one closest to the top of the lung where it opens and we originally thought it was a scar from them shoving tubes down there when I had the blood clot. They were sticking tubes down there regularly according to my family.

Next step is to get a ct scan to see what's happening and then back on chemo. I see my onc again in 6 weeks. My CEA is back up to 57 but it was over a hundred when I started this chemo last time and it dropped to 7.5 after 6 treatments. So she said we're not in a rush and she wants me to be as healthy as possible before I go back on. 

She said she's never seen a colon perforate like mine did to cause the sepsis but it's something she'll keep in mind for her other patients on the same chemo and I'll have an antibiotic to take during my next rounds starting about halfway through. Yup, if there's going to be an unusual side effect, I'll get it! Ugh, enough already.

So, not a bad appointment. And my husband and I went out for dinner after, which is the first time in months, since before I got the sepsis. And I'm feeling so much stronger these days that I'm not exhausted after such a long day. I'm feeling pretty okay about things at this point.

Jan

mokomapa's picture
mokomapa
Posts: 24
Joined: Jan 2010

Jan,

I'm glad your appointment went well and you are doing a little better.  We all know about the stress and how it affects our lives every day.  I'm having my annual checkup in March and I'm already worried about it.  I hope everything goes well with your scan.

Tom

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Tom, it's great to hear from you! I've been wondering how you are!

Jan

mokomapa's picture
mokomapa
Posts: 24
Joined: Jan 2010

All good here Jan.  Working on selling my business and start enjoying life to the fullest.  Always good to hear from you.  Keep strong and keep in touch.

Tom

Trubrit's picture
Trubrit
Posts: 4827
Joined: Jan 2013

some kind of Happy Man is in ordre, because all-in-all, this is not bad news. 

So, here is my friend that helps me express my joyrunning around emoticon

I am also happy to hear that you were able to go out and eat, and that you feel stronger. 

You're on the up and up, JanJan. 

Tru

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Thanks for the happy dancing man Tru! I do feel better after seeing her. I feel bad I was dreading it so much. My onc walked in and said "you're not going to make me cry again, are you" and I was surprised. Apparently I made her cry last time I saw her. I like her so much, she's proactive. Not like my last onc that just told me to take aspirins when I kept having blood clots and basically blew me off until I almost died from one. 

Jan

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