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Last Week was Hell

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

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!!!  

Trubrit's picture
Trubrit
Posts: 5382
Joined: Jan 2013

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's picture
NewHere
Posts: 1282
Joined: Feb 2015

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's picture
ron50
Posts: 1729
Joined: Nov 2001

                             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
Posts: 135
Joined: Apr 2017

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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's picture
NewHere
Posts: 1282
Joined: Feb 2015

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's picture
SandiaBuddy
Posts: 1163
Joined: Apr 2017

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

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

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's picture
lizard44
Posts: 409
Joined: Apr 2015

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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
Posts: 253
Joined: Jul 2017

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.  

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

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

plsletitrain
Posts: 253
Joined: Jul 2017

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! 

darcher's picture
darcher
Posts: 296
Joined: Jun 2017

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.  

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

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 

Canadian Sandy's picture
Canadian Sandy
Posts: 689
Joined: Jul 2016

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's picture
JanJan63
Posts: 2482
Joined: Sep 2014

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's picture
PamRav
Posts: 290
Joined: Jan 2017

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's picture
Cindy225
Posts: 172
Joined: Feb 2017

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

Canadian Sandy's picture
Canadian Sandy
Posts: 689
Joined: Jul 2016

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

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

I'm very worried. He was very against chemo and I suspect that's not served him well. He did so much research and was so articulate, I miss him.

Annabelle41415's picture
Annabelle41415
Posts: 6687
Joined: Feb 2009

You have been through so much lately and have always been so positive on the boards and so supportive.  I'm sorry you are going through so much.  It's ok to get frustrated with your doctors as I've done the same with a situation I've been through lately, but if you can find "one" that is honest and open with you keep going back to that same "one."  I've learned that a long time ago.  I'm not believing a lot of what some doctors say because what I'm feeling isn't right or shouldn't be happening so just say "wait a minute, this is what is wrong and now I'm needing answers."  You are in my thoughts and prayers.  Hope that you feel better soon.

Hugs!  Kim

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

Luckily, this doctor is not one I'm likely to run into again. He was just one of the surgeons at the hospital where I was taken. We had another negative experience at the same hospital when I'd had the blood clot and was being recusitated (sp?) and he suggested to my husband and daughter that they not coninue to recusitate me because the brain damage was going to be too severe. He said I probably wouldm't know them, I'd be living in a home, I'd be barely aware at best. He based this on stats and whate he'd seen previously. Okay, but we're all individuals. He thought it was best if they let me die. My family refused his suggestion and here I am now. I guess it's normal for a doctor to get jaded and negative but give us a chance! 

My onc will probably be quite horrified when I tell her what happened.

Jan

beaumontdave's picture
beaumontdave
Posts: 1109
Joined: Aug 2013

Yeah that's a rough week alright Jan, you deserve better treatment than your getting, no question. It made me think of the doctor who handed me the pathology report a couple days after the first surgery. At that point I still didn't know much about cancer except if it got loose, it was bad news. So he's smiling, hands me papers and says "2 of 17 nodes were positive" My heart sank to the floor, he just kept smiling and said "I've seen worse", then walked off. I'm sure he thought he was projecting optimistic confidence, but because he didn't take the time to qualify things or give me any context, I spent the next days thinking I was screwed. That's an awful feeling and I'm sorry you had to deal with it like that. A hospital room can sure be a lonely place, even with, or especially with a neighbor whining about trivial stuff. I'm glad your home, keep drinking those fluids and get your strength back..........................Dave

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

Thanks Dave! I picked up the anti-nausea Rx I was given when I first started on the Xeloda but hadn't needed. I'm finally feeling failry normal today. 

The funny thing about the neighbour who was whining is that she'd had her tummy tuck almost a week before. And after she'd been whimpering to the nurses when her mother came to visit- walking through the door asking how her 'precious' was feeling- she perked right up. 

Yeah, these guys sometimes need a reminder of how to be human again. Empathy can be faked. They can get jaded and bitter and twisted but they can still fake being kind.

Jan

PamRav's picture
PamRav
Posts: 290
Joined: Jan 2017

i think we all have run into "that" doctor and have a story to tell.   Some nutty resident told me minutes before I was rolled into the OR that if were was more tumors than they suspected.  That they would close me up and there was nothing further to be done.  Wtf    Idiots are all around. 

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

Oh, that's lovely, isn't it. Is there a module in the training in how to deal with people? There should be. I've been trying to write a book. As if it would ever be published... But the idea came from hoping that it would be and some medical profesionals would read it and know what it's like at our end. How we hang on every word and every nuance of what they say. Even the facial expressions. Did the ct scan tech look like they pitied me? Does the nurse look like she feels sorry for me? All of that.

Jan

plsletitrain
Posts: 253
Joined: Jul 2017

...that I have a tactful oncologist.  I was thinking if the same scenario that you guys encountered happened to me and if my doctor happen to tell me I'm beyond cure in an impolite, imprudent manner, I'd probably say "Don't worry doc, nature will one day find a cure for me but nature's wonders will never find a cure to your imprudence." Hehehehe. 

Bellen
Posts: 281
Joined: Aug 2016

Jan - You really are one of the most positive on this site and always offer support for others.  If there is anything we can do, other than all of our posts wishing you well and supporting you, please let us know.  I hate to hear what you went through, and how insensitive some drs are.  My heart goes out to you.  Stay strong.  I have a very caring Oncologist.  Unfortunately, my treatment and Onco are 2 1/2 hrs each way - from where I live - wouldn't trade him for anything.  He gave me hope when I didn't have much, and continues to.  Continuing to think of you.

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