Last Week was Hell

JanJan63
JanJan63 Member Posts: 2,478 Member

I'm sharing this in case there's something in here that's of some help to someone. I've just had the crappiest week. Warning, I'm crabby and upset and probably not going to type in as nice of a way as I susually do, but more like how I really talk.

Last Saturday I got up and was so sick. Stomach cramps, noises like the bowels of hell, gas, pain, nausea. I'd just started back on the Xeloda because I do two weeks on and then one off so I thought that's what it was at first. And, of course, I'd just been told that my mets have doubled in size and I have a new one. Turns out I had another blockage. It took me a couple of days to figure it out, duh. In the meantime I was trying to tough it out and not go to the local emerg and sit there all day so I can get fluids. Plus a poke, I HATE getting IV pokes. So I was lying in bed for several days, barely able to move, and finally decided to suck it up and go to the hospital. 

Well, the doctor got all panicky and instead of just giving me the fluids and pain killers and antinausea and heartburn stuff like they usually do he decided I should go to the city and have another ct scan in case I needed surgery. So they take me by ambulance to do that and they decide that it is a blockage but they're not going to do surgery. I'm taken back to our town hospital and kept overnight with an IV. Good, because they said my liver was going to fail if I'd waited any longer as dehydrated as I was. Note! Do not be an idiot like me and wit too long to go and get fluids when you're really dehyrdrated!

The next morning they decided that I'd go back to the city hospital and be seen by their surgical team because they wanted to know why I was getting blockages. Back I go by ambulance. After a few hours the surgeon comes in and tells me that he's very concerned about my ct csan and that he thinks I have another huge mass by the original site and that it's attached itself to coils of bowel and that's what's causing my recurring blockages. A huge mass???? What the hell?? I was shocked but managed to ask why it hadn't been seen by all the people who are on my care team and all the ct scans I've had. He had no answer.

He asked if I bleed rectally. I told him I have all along but my surgeon says it's normal because the colon is 'angry' about disuse. He made a face like 'well, there you go'. I sked what was going to happen and he said 'well, there's nothing we can do but try to make you comfortable'. I said "so, what, I'm just going to die, sorry about my luck? That's it?" He said they can try to keep me comfortable. Holy crap! Less than a week before I'm told the good news is the cancer is only in the one lung and now I have a 'huge mass'??!! I've been feeling great. Better than I have since my diagnosis. I was stunned and horrified. I didn't even cry. It was completely surreal.

So I stayed in the hospital that night and the third surgeon came to see me. He's on the onc team and works with my surgeon. We discussed the whole thing and he said he'd take a look at the newest ct scan and get back to me the next morning- yesterday morning. So I spent a night in the hospital awake for most of it wondering what had happened and how this had gone so bad so fast and what I was going to do about everything. The woman in the next bed had had a tummy tuck and was whimpering and whining to the nurses and left the big light on so I couldn't sleep and she was lying there with sunglasses on. What the hell. I wanted to scream at her. Horrible , I know, but suck it up princess, you have NO idea. Every time the nurses spoke to her she'd answer like a child. UGH!

Anyway, the doctor came back yesterday morning and told me that he'd gone over the ct scan very carefully plus all the previous ones and he saw no reason to believe there was a mass. He said I've been watched very carefully and nobody has missed anything. He thinks what looks like a mass is something they see sometimes from having had radiation. It shows up oddly in the ct scan. It also likely has left areas of bowel that are thinner opening than others and that I'll probably continue to have obstructions occasionally and eventually may have to have surgery for it at some point. I burst into tears of relief. He looked taken aback until I told him I'm just so relieved and thanked him profusely. Then he said- I think this is significant- that it's easy for them to forget that there's a real person at the other end waiting for an answer and being scared.

So, this was my week. Right now I'm feeling much bettre but it will be a few days before I get my strength back. I missed a horse clinic yesterday and I was supposed to meet up with my friend today who is visiting from Scotland. I HATE, HATE, HATE not being able to make simple plans because I might be too sick to do it. Stupid cancer. F**k off and go rot in hell where you belong. We want our goddam lives back. Sick of the suffering, sick of the emotional turmoil, sick of the pain, sick of the treatments, sick of the guessing. Enough!!!  

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Comments

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Feel better?!!!!

    I am so sorry for the horrors of your week. I'm speachless about the one Doctor telling you that you had a huge mass, and can only imagine the shock to your system, to your emotions, to your whole life energy, that must have been. And THEN, to be told that no, you don't have a huge mass.  Experiences like that can really play with your emotions. With your mental state. Its no wonder that you are angry.  Get that anger out, and then step back and take the biggest non-physical breath that you can take. 

    And I'm sure I don't have to tell you, never ever leave it that long before going to the hospital.  Once the liver goes, you go. Stick with us, lady. 

    I can only pray your days improve from here and that the chemo does its work. 

    Tru

  • NewHere
    NewHere Member Posts: 1,427 Member
    Un Effin Real

    Sorry my New Yawker goes full bore when I read things like that.  What a f-nut.  It is ridiculous that the person is allowed to practice medicine.  Have seen it before.  I am glad it all worked out for you.  I had a bad week with being jerked around, but NOTHING like how you were.

    I am not going to lecture you about getting your butt to a doctor or hospital quicker if you are not feeling well, I defer to Tru's lecture in her post about that ;)

    Thoughts with you JJ

  • ron50
    ron50 Member Posts: 1,723 Member
    Hugs mate

                                 One of the joys of living on a tightrope is forever wondering if there will be somene competent to catch you when you do fall. My nephrologist is a great catcher my gp fumbles everything . Stay in survivor mode and get everything checked asap, Hugs Ron.

  • EissetB
    EissetB Member Posts: 133
    I wish you could come over to

    I wish you could come over to USA to get check by better oncologist. I hate knowing friends get real sick rather than getting better. You can stay with us if you happen to decide to get a help in USA. Hope you'll get better soon!!

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited July 2017 #6
    Thanks for the support and

    Thanks for the support and reading my long post! It's taking me  longer than usual to come back from this one. I feel totally fine today but I'm so weak still. When I've had the blockages before, once they go I feel almost intsantly better. It's been two days now nad I still feel like a limp noodle. I'm going to start adding protein powder to what I'm eating for a few days. 

    Yeah, the one surgeon was saying when he opens up people like me he usually finds cancer all through them and then they go fast. How terribly reassuring when you don't really know what's going on. Geez.

    Jan

  • NewHere
    NewHere Member Posts: 1,427 Member
    For Crying Out Loud

    Yeah, the one surgeon was saying when he opens up people like me he usually finds cancer all through them and then they go fast. 

     I cannot stand that stuff.  There is one thing at not being too caught up emotiionally to the point where you cannot do your job as a doctor in this field and there is another thing just being an a-hole "I am god doctor" stuff.  

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    So sorry

    So sorry for the turmoil, Jan.  But at least you are back home again (I assume) and things are getting better.  Cheers.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    NH, yeah, the whole thing was

    NH, yeah, the whole thing was pretty upsetting. Funny how the results I got last week about the mets being bigger and a new one seem less important after being told I had a huge mass.

    I am home SB, thanks. Still not kicking it yet, though. I feel much better but I'm still pretty wobbly. We're having a heat wave right now so that's energy draining, too. 

  • lizard44
    lizard44 Member Posts: 409 Member
    edited July 2017 #10
    Oh, Jan

    What an awful week that was!  So sorry you had to go through that.  Well,  you wouldn't have have "had" to go through so much of the stress of it if  that doctor had half an ounce of sense in how to talk to patients. I hope you get some of your strength and energy back  quickly, but don't push yourself too hard.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited July 2017 #11
    Thank you Lizard. I just

    Thank you Lizard. I just wanted to add one thing since I posted such a negative post. The night I'd been told I had a mass but hadn't talked to the thrid doctor yet my husband and I were going down in the elevator to get something for me to read. An older man got on at one floor and smiled at me as he did. When we all got off just before he walked away he touched me on the arm and said "you're going to be okay" and gave me a reassuring smile. Often people are just kind but it made me wonder of he was an angel sent to give me hope and strength. Whatever he was, I'm crying thinking about his kindness right now.

    Hugs!

    Jan

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    Hello

    Hello Janjan, I'm new here but I've lurked weeks before and I found you're one of the most positive people here.  I think that old man was really an angel sent by God to assure you that you'll be fine.  Try to stay positive despite some doctors messing with our positivity.  I know its easier said than done, but justs think that you'll get through this and this is just one of those rough seas we will encounter.  

  • darcher
    darcher Member Posts: 304 Member
    edited July 2017 #13
    It's good you got the correct

    It's good you got the correct answer.  How in the hell can a doctor be so cavalier and say those sort of things is just plain horrible.  Thankfully you got it corrected and have some peace.  

  • Canadian Sandy
    Canadian Sandy Member Posts: 783 Member
    I'm so sorry that has

    I'm so sorry that has happened to you. I was very upset by the way my oncologist told me that I had lymph node mrtastisis. He walked in the room and said there was nothing he could do. The next visit I told him that I was a very positive person and did not like the way he mentioned my metastasis. He denied saying it that way. I wasn't going to argue so just left it alone. Luckily I had already been told by a radiologist that they were small and adding another chemo drug along with my xeloda should help. He was so very kind I will never forget him. 

    I am clear of cancer at the moment after two clear ct scans and one pet. 

    My heart goes out to you Jan. Keep strong and know that we are all here for you.

     

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member

    Hello

    Hello Janjan, I'm new here but I've lurked weeks before and I found you're one of the most positive people here.  I think that old man was really an angel sent by God to assure you that you'll be fine.  Try to stay positive despite some doctors messing with our positivity.  I know its easier said than done, but justs think that you'll get through this and this is just one of those rough seas we will encounter.  

    You're so sweet! Thank you! I

    You're so sweet! Thank you! I try very hard to be positive but it's hard sometimes. The third doctor that told me he didn't think it was a mass commented on my attitude as well. I told him that I don't want people to feel sorry for me and that I want people to see that you can live with cancer and still enjoy life. Also I don't want to be a victim or have people feel sorry for me. Empathy, yes, pity, no thanks. I said if I allow it to make me negative and feeling sorry for myself then it's already taken my life and I will not allow that.  

    Welcome to the board!

    Jan

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    darcher said:

    It's good you got the correct

    It's good you got the correct answer.  How in the hell can a doctor be so cavalier and say those sort of things is just plain horrible.  Thankfully you got it corrected and have some peace.  

    I guess they get hardened

    I guess they get hardened after a while. Its unfortunate but I think you'd have to learn to disassociate yourself or you'd have a hard time doing that job. There was a third young woman with them when they were talking to me. No idea who she was, maybe a resident, but she looked like she wanted to cry with me and she gave me a quick hug before they left the room. I am always grateful for small kindnesses.

    Jan 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member

    I'm so sorry that has

    I'm so sorry that has happened to you. I was very upset by the way my oncologist told me that I had lymph node mrtastisis. He walked in the room and said there was nothing he could do. The next visit I told him that I was a very positive person and did not like the way he mentioned my metastasis. He denied saying it that way. I wasn't going to argue so just left it alone. Luckily I had already been told by a radiologist that they were small and adding another chemo drug along with my xeloda should help. He was so very kind I will never forget him. 

    I am clear of cancer at the moment after two clear ct scans and one pet. 

    My heart goes out to you Jan. Keep strong and know that we are all here for you.

     

     

    Thank you! I know you guys

    Thank you! I know you guys are all here for me and each other. I am so grateful to have found this forum a few years ago, I think it's what's kept me sane. Having the opportunity to ask people who've actually experienced things and have done some research themselves has been huge. Which reminds me. John has been on my mind so much. I'm so woried about him. I wish we had an answer but I'm scared what it is. 

    Jan

  • PamRav
    PamRav Member Posts: 348 Member
    So sorry

    you were subjected to such nasty healthcare practitioners and such negative energy . It boggles the mind.  I hope you are feeling better and are able to shake this whole episode off. 

    Take good care of yourself.  Probably time for some horse therapy!!!

  • Cindy225
    Cindy225 Member Posts: 172 Member
    Lots of Hugs...

    What a week Jan... one day, one week at a time...keep fighting.  Best.  Cindy

  • plsletitrain
    plsletitrain Member Posts: 252 Member
    JanJan63 said:

    You're so sweet! Thank you! I

    You're so sweet! Thank you! I try very hard to be positive but it's hard sometimes. The third doctor that told me he didn't think it was a mass commented on my attitude as well. I told him that I don't want people to feel sorry for me and that I want people to see that you can live with cancer and still enjoy life. Also I don't want to be a victim or have people feel sorry for me. Empathy, yes, pity, no thanks. I said if I allow it to make me negative and feeling sorry for myself then it's already taken my life and I will not allow that.  

    Welcome to the board!

    Jan

    Yes it really is easier said than done..

    But I believe cancer patients are one of the strongest herd.  I also like your attitude.  That's what I've been trying to tell myself since I was diagnosed.  I told myself not to give cancer too much credit, if I keep on thinking it will kill me, then it will consume me and most likely it will really kill me.  Life is too uncertain that even cancer patients live longer than other healthy people who suddenly just die for some reason.  Bottomline is whether or not you have cancer, live your life to the fullest as you'll never know what happens tomorrow.   

    I believe your attitude will get you through this trial.  And say goodbye to that tactless doctor! 

  • Canadian Sandy
    Canadian Sandy Member Posts: 783 Member
    I've been thinking about John

    I've been thinking about John also. Hope he is okay. Such a smart man.