Roller Coaster Ride – No kidding
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My family has been pretty good. My sister spent the time to go online and read about it. I know she had been on this site and read up a bunch so that helps. So have a couple of the kids. I suspect that my husband’s sisters have but they want me to dribble out every bit of information and when I don’t then I am leaving them out of the loop. We tried the one person as the contact and then forward emails but people got impatient and bypassed the system. I now just tell them when there is news and ignore them where there is nothing to say…..plus I turned off his phone so they can’t bypass me.
People really don’t know what to say but some of the things they do say are outrageous. I had one lady asked how long they gave him to live. (uh, duh he doesn’t have that expiration date on his behind so I have do idea). Also have people say that it’s too bad he’s such a drinker and he never really has been then you get the look of pity thinking you are in denial. I want to print pamphlets up to hand out.
It’s just crazy. I am glad I found you all….this has helped so much. I always tell my patients to find something….a support group or something so people can compare stories. If you have a problems someone has dealt with it and has ideas. Love it.
Best line award goes to this:
“How are you doing with all this?” I fight the urge to scream and say “HOW THE …… DO YOU THINK I AM DOING?”
went to breakfast with some friends…not ONE asked how my husband or
i was doing…so elephant in the room that NO ONE talked about.on the way home one lady i went with asked “um so how are you doing?”
I asked “Do you want a real answer, or one that will make you feel ok?”
seriously WHY is cancer such a hard thing to talk about?
Sorry for your troubles… you definitely have a double whammy…
no no no fun!
DorienOh My Gosh! To Take a line from a Seinfeld show, “Family, they can be the worst!” Knowing me the way I do at this point I would have written them off my list. As if you don’t have enough on your plate! Do they understand what CC is and what he is going through or are they in denial. Guess one could have a sit down as Teddy would say with the leader of the pack and ask that person to talk to the rest. Yikes! Glad to hear you are working with someone and your DOC. You rally need to make some moments for yourself, notice I said moments.
I have had an appt with my doctor twice in the last two weeks to see about getting something but I end up having to cancel it because we are back in the hospital with one or the other. I try really hard not to take meds at all….well except my blood pressure stuff but I think something to take the edge off will help. I am very lucky that I have a great counselor that I have been seeing off and on for several years so I already have a great bond with her. She will even just do phone calls if I can’t get into the office. It helps to be able to vent to someone who makes no judgement on what I say.
I have come up with things I will never say when this is all over with….the top of my list is “How are you doing with all this?” I fight the urge to scream and say “HOW THE …… DO YOU THINK I AM DOING?” but I control myself and am polite always. And then the fact that his family is not overly supportive does not help (They would be happy if I disappeared) so I get caught in the middle trying to keep them and him happy then taking the blame when things aren’t right.
And of course they all think they have medical degrees so despite the fact that I have RN behind my name, I have no clue what is going on and am being too smothering and overprotective of him.Sorry to vent…..just had to deal with family stuff again so by dander is up a little.
Aw, I really do feel so bad for you as it was about all I could do looking after 1. Please don’t worry about the stents. Just make sure they give him the sleepy time stuff! Ask if they will give a whiff or 2 to you!Actually if it is a stent problem he will feel so much better after he gets the stent. You are going through so much can you ask your DOC from something to just take the edge off? I am not good with Meds so I just used 2.5mg of Valium when I felt it was needed and that worked for me. Like I said, just to take off the edge. BTW our Hospital; had a fabulous gift shop that Robin and I went to often, it’s a good little break in the day and we also lucked out on the Hospital Cafeteria, we loved it. Sometimes we would ask our youngest who was 14 then, where he would like to do dinner and it was always the Hospital!
I want something other than hospital food…not complaining because it’s pretty decent food just tired of hospital food. So CarmelKorn, Cracker Jacks or whatever would just be good. Figured out last night that I have spent 24 nights in this hospital since June 2nd with either my husband or my son. Some of the staff have even started to recognize me.
Blood cultures just came back and the two peripheral draws came back positive for gram-negative rods…..my guess is the Klebsiella again. They are getting ready to do another CT of his abdomen to see if there is an abscess in there that they missed two weeks ago. I still think it is probably the anastamosis of the small bowel and the bile ducts. The GI doc thought they might be narrowing and causing issues thus needing stents with an ERCP. I hope not but that’s about where it goes.
Feel like I am verging on my own nervous breakdown now…..this plus my son’s cancer….it’s just about too much. Especially trying to be in two places at once. I actually just hoped they would be in the hospital at the same time.Hi Cookie, can’t we play something more sweet like CANDYLAND? Remember that one? I loved that one as my DAD actually had a Candy Store downtown KCMO and it was called CANDYLAND! I worked in it from the time I was 10 even made faces on his freshly made suckers! And his CaramelKorn warm off the slab To die for! Yes, it was a sweet childhood.
And I call it a game of chutes and ladders at times… You climb and climb the ladder only to find yourself sliding down a chute.
I’m happy to hear you got your way! But sorry you had to fight so hard for that. I had a couple of blood infections, too. And spent a few days in the hospital with them. I believe they gave me Levaquin, also, and I was usually out within a few days.
I hope it settles down for Mark. They threatened to remove both my port and my pump, but I wouldn’t let them! And I guess my body finally got used to them.
Good luck and praying for good results from gem/ox. If he can handle the cocktail, great, because I don’t think many cc mutations can live through that combo.YEA! Good for you! What could they have been thinking wanting to put Mark with an infection in a room with a sick man who is coughing? I would have thrown a hissy! Teddy used to get what they called blood infections 2 X a year. High fever and chills like I never saw before. Then he would get so weak I would have to take him by ambulance to the ER. They would use an IV of Levequin and that worked the best for him. Usually took about 3 -4 days and home again….to begin the roller coaster ride all over. I hope your son is doing great now. Be Strong and let us know how Mark is doing! (Ha, look who I am telling to be strong, the lady who almost took the Hospital down)
I read so many posts about this being a roller coaster ride and I had no idea. We had out first chemo on Friday – Gemcitabine and oxaliplatin (thought it was Cis but not). Things went awesome….no nausea, no fatigue, just some of the cold sensitivity from the ox and some horrific night sweats. I even felt happy enough that I went back to work and let him take our son to deal with the surgeon (he had a thyroidectomy and radical neck dissection for thyroid ca and then abscessed needing I and D of the wound). Things went really well, I got a full day in which was only my 5th day of work since May.
Got home and Mark was parked on the couch complaining of not feeling well. Took his temp and it was 102.7. So back in the car for the 2 hour drive to Seattle and 5 hours in the ER and they decided to admit him. I am beginning to see infection/elevated temp as probably the biggest part of our roller coaster.
Then I had to get really mean last night. They took us to the floor and were getting ready to put us in a semi-private room and the guy in the other part of the room was coughing and hacking and sounded like he was really sick. I said NO WAY. I put my foot down and insisted that they find a private room. I am tired of putting my husband who is already fighting some sort of infection in a room with some one who has who knows what. Took a bit of arguing and them telling me there were NO private rooms and me threatening to take him home and the night shift Resident Doc got involved and backed me up. Suffice to say we are in a private room now. Amazing that the floor we are on has a bunch open.
Still waiting to find out if he was septic this time again. White count was normal and so was all his liver functions so I am less worried now. But they are talking about taking out the chemo port as a possible source that will bum me as it will mean another surgery at some time to put another one in.
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