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rose-may

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  • in reply to: New’s on Rose May? #27881
    rose-may
    Member

    Hi!

    I am recovering from the aborted liver resection and it’s just plain hard to sit up straight in a chair and type, not to mention all these heavy narcotics affecting my fine motor skills and not letting my fingers hit the keys I tell them to.
    I just updated the caring bridge site a few minutes ago.

    http://www.caringbridge.org/visit/rosebarlow

    in reply to: Sorry I haven’t written in a while #25785
    rose-may
    Member

    Good attitudes certainly help you cope with things better and improve the quality of life, but don’t necessarily change the course of events.

    I wnt in for surgery on March 25 and the operation was aborted upon discovery of several tumors on the lymph nodes near the aorta, outside of the liver. The surgeon described them as a “string of pearls” and couldn’t tell me how many there were, more than 10 for sure.

    Still in hospital wired up and heavily medicated so much doing much typing but thought I’d share here on this thread. Attitude is still good believe it or now, but big paradigm shift happening and needing a new treatment plan but I’m not ready to do any big decision making until I get these blasted tubes out of me, can put regular clothes on and think from the comfort of my own big cozy recliner at home.

    in reply to: Hospital Communication #27570
    rose-may
    Member

    I spent the day on the phone and finally got some answers about the surgery. I guess the surgery is a go for Wednesday morning, they will contact me tomorrow with a time and pre-op instructions.

    I also discovered I had a clinic appointment early tomorrow morning that I was not notified of, so they canceled it (I live two hours out of town). Also I learned that the NP was supposed to have done a bowel prep, whatever that is, and failed to do that, I never even heard about it.

    I do plan to file a grievance (after the surgery) because I feel my case has been mishandled by the failure in communication. It has been at cost of my health and mental stress and delayed my surgery for over 2 weeks.

    I am hoping for better treatment now that I’ll be front and center on the operating table and a little harder to ignore.

    After surgery if follow-up care continues in this vein, I will definitely be looking to change doctors or facilities.

    Thanks for your supportive replies, it really helps…….

    in reply to: Pain from external drain-is this normal? #18825
    rose-may
    Member

    Funny this thread got resurrected because I’m dealing with this very issue right now. I’m on my second external stent and the pain at the site where the tube exits my abdomen has been very problematic. I’m also experiencing back pain that is getting more and more intense.

    I can’t stand up straight becuase it pulls on the tube so I walk around a little hunched over, bending over hurts, laughing or crying hurts, taking too deep a breath hurts. The whole thing is very unpleasant.

    My tube exits in the center of my belly, and I do experience pain from time to time on my right side which I assume is the tumor pressing against nerves.

    Eating intensifies the pain, it’s like having food in my belly pushes against the drainage tube and really hurts, I can only eat small portions, some days it’s hard to even drink water becuase of the pressure pain.

    Flushing the drain with the saline water is also difficult because it creates more painful pressure and I dread it.

    Apparently there’s not much to be done about it. The doctors seem to be happy just to hear that it is draining and seem reluctant to do anything unless it gets blocked up and stops draining. Meanwhile they just recommend pain pills to deal with it.

    I am supposed to be getting myself strong for surgery this week, but this drainage tube is making that very difficult, and I am shedding more weight (6 more pounds this week!) and feeling very dehydrated. I am hoping I can at least get some IV fluids to relieve the dehydration symptoms.

    Very frustrating, feel like I just have to hang on as best as I can while waiting for the verdict about whether the surgery is a go or not.

    in reply to: Loving Each Other – One Day At A Time #15576
    rose-may
    Member

    Thank you for ressurecting this thread. My story is so similar to Patty’s except that I am just at the beginning and haven’t gotten to the surgery yet, which is scheduled for this coming Wednesday. The stories about people being opened up and declared unresectable are difficult to hear but if that happens to me at least it won’t be a complete surprise.
    It is encouraging to hear how well Patty is doing despite being unresectable, it gives me hope either way.

    in reply to: One year ago today I had unsuccessful resection surgery #27451
    rose-may
    Member

    I think about you a lot, Lisa, especially as my liver ressection is looming and I cannot even imagine how devastating it is to hear that the resection is unsuccessful after being given hope like that. It’s essentially all palliative care from there and I admire the courage it must take to live in the presence of your mortality.

    I follow along on your blog and am inspired by your faith. I am glad you will no longer be working and can concentrate on living life to the fullest.

    in reply to: More stent troubles #27381
    rose-may
    Member

    Well I went in Tuesday for a biliary drainage tube replacement. They put in a larger diameter and also shoved it further up into my liver to drain more bile.

    Talk about painful! I think coming off the sedatives was the worst pain I’ve felt yet since this whole ordeal started, like a horse standing on the tube insertion site. Thank god for demerol and quick relief in the IV.

    I have not been able to sit up and type since then but today I am improved enough.

    Had blood draw done today and have come down two points on the total bilirubin. I am now at 11 and need to get to 7 for liver ressection surgery on Wednesday.

    I am actually eating a little better which is really hopeful as I pretty much gave up on eating with the last tube. I lost a few more pounds, though, up to 20 pounds lost now which is bothersome, I didn’t have that much to spare in the first place.

    I think to myself what a horrible ordeal this is already and I haven’t even had major surgery yet, and then I read all these other stories and see that this is nothing out of the ordinary for this kind of cancer and so many have been through much worse with infections, ascites, and other health problems complicating everything.

    I am with EVERYONE on this board in solidarity and pray for strength and mercy.

    in reply to: Living with the after effects of surgery!! #26215
    rose-may
    Member

    Carol:

    I am feeling for you, especially as I await a liver resection myself and am already having all kinds of digestive issues from the stents and biliary drainage systems, so the thought of more of the same after surgery is unpleasant indeed!

    I too am young, 45, so you can see you are not alone by any means in the age category.

    I am so sorry about the discovery of something in your lymph node, one of my great fears, to go through all this hell of prodecures and major surgery and still have all kinds of problems down the road.

    I keep positive by still hoping for the best but it gets hard to do when I hear all these stories about what seems to be a downward trend with this kind of cancer.

    Keep coming back her for support, it makes a world of difference to dialog with people who understand like no one else can.

    in reply to: More stent troubles #27374
    rose-may
    Member

    I guess it’s back to the hospital tomorrow to have the stent adjusted, procedure #3. The surgery is pushed to March 25 and hopefully this stent will do the trick. What an ordeal!!!!!
    It’s so hard to keep stayong hopeful but what choice do I have?
    All this and the surgery could be aborted if they discover anything they weren’t expecting to see, like cancerous tissue that didn’t show up on the MRIs or lymph node involvement.
    Thanks so much for all the support and love here on this board, it’s a real lifesaver. Most people simply have no idea…….

    in reply to: Strange Question #26567
    rose-may
    Member

    This discussion has taken an interesting turn and I have contemplated whether some of these procedures do more harm than good myself. For sure the stent placement is absolutely necessary when there is a complete physical obstruction.

    I wonder about a lot of the drugs that get ofered. I’ve been offered narcotics to use as needed for pain, anti-nausea medicine, stool softeners, anti-itching meds, anti-anxiety meds, antibiotics, blood thinners and more already. If my liver is congested from the obstruction how can I process all these drugs properly?

    I worry when I am in the MRI machine that the frequencies excite and stimulate the cancer cells…..

    in reply to: Sorry I haven’t written in a while #25780
    rose-may
    Member

    Thank you David for your encouraging words. The stent placements were ordeals enough in themselves, I can only imagine what the surgery recovery will be like, but I am so ready to walk through that fire and get to the other side of it where I have a better shot at survival.

    I go in with a lot of uncertaintly as they could open me up and find it gone into the lymph noedes or othe canderous tissue that didn’t show up on the MRIs and abort the operation. Here’s hoping that is not the case and I’ll wake up out of the anesthesia with a high-five.

    in reply to: Sorry I haven’t written in a while #25776
    rose-may
    Member

    Your post makes me hopeful as I face major surgery on Thursday and have not had any other treatment other than stent placement to relieve liver congestion so that it can be operated on. The whole course of this cancer and treatment are hinged on how the operation turns out and stories like yours give me hope that I have a better shot at this than I think I do….

    in reply to: Will it ever end! #27227
    rose-may
    Member

    Speaking of bird stories, check out this one! Beautiful!

    http://www.snopes.com/photos/animals/freedom.asp

    in reply to: Will it ever end! #27226
    rose-may
    Member

    I have a bird story to share too.

    The day after I recieved the news that I had a possible tumor in my liver/gallbladder I had undergone a bettery of MRIs and a CT scan.

    As we sat in the GI specialist’s office to hear the verdict, it seemed like it was taking a while for him to get to us. My companion decided to open the blind on the window so we could look outside and see the sky.

    The landscape that we could see from the window was one of hospital rooftops and buildings. We could not see trees or any other natural thing.

    Suddenly a bald eagle lifted off from one of the rooftops and circled around near our window. I said, that eagle has a message for me, doesn’t it.

    Sure enough the doctor confirmed a suspicion of cc soon after, and while it hasn’t made the shock and aftereffects any easier, I do feel the presence of a higher power guiding me through this experience.

    in reply to: Nux Vomica #27179
    rose-may
    Member

    Nux Vomica is a homeopathic medicine. Homeopathics are an interesting branch of alternative medicine and are supposed to work more on an energetic level and tend to be prescribed according to symptom pictures that individuals experience.

    I personally have had no luck whatsoever with homepathics, so I am rather skeptical, but they are completely harmless. Either you get a dramatic relief of symptoms from them or nothing happens at all.

    http://en.wikipedia.org/wiki/Homeopathy

Viewing 15 posts - 1 through 15 (of 35 total)
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