CT Scan results, 2 months after last Y90 very bad

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Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #22
    KarenMG said:

    Thanks Abita

    I’m so glad that you were able to get that second opinion and it made you feel hopeful. I’m actually really out of options in my town. So it would be some traveling involved plus gathering my records. It would definitely be worth it to get a little hope back in my soul! I don’t think my psyche can handle another one of his “chats”! 

    Thanks again, you were very helpful! 

    Karen

    Doable

    I have to travel 360 round trip to see my Oncologist, Radiation Oncologist and Hospital. No other options here in town.  It was a long hard haul during chemo, and I had to stay in the city for radiation, but it is doable. 

    I hope you find someone who is just the right fit for you. 

    And enjoy Hawaii. 

    Tru

  • KarenMG
    KarenMG Member Posts: 109
    #23
    Trubrit said:

    Doable

    I have to travel 360 round trip to see my Oncologist, Radiation Oncologist and Hospital. No other options here in town.  It was a long hard haul during chemo, and I had to stay in the city for radiation, but it is doable. 

    I hope you find someone who is just the right fit for you. 

    And enjoy Hawaii. 

    Tru

    360 Miles?!

    Wow, that is a haul! You know MD Anderson is in Houston Texas which is 944 miles from me so that would be flights and hotels. Atlanta Georgia or Duke University hospital would be 3-4 hours I think one way. So...not sure which way to go.

    Wow, you have really perservered to get treatments. I wish I knew if doing that would be helpful to me. Nobody knows the answer to that for sure!

    Thanks for your thoughts once again Tru.

    Love ya, Karen

  • feckcancer
    feckcancer Member Posts: 189 Member
    #24
    KarenMG said:

    I'm with you!

    Yes, that is my plan. I'm just still trying to pick myself up off the floor after that office visit with Doctor Death. Truly I know there has to be a way to deliver bad news without crushing someone's spirit. I didn't mean sugar coat anything but he really has almost broken me down. Last night I was having thoughts of really wanting to hurt myself and get it over with. I was panicking, my heart racing and my blood pressure sky high. I asked my son to come over and help me out. He thouht it would be fun to aggravate me to get me out of it. It didn't work, he just made me super angry with him. Not just a joking way of aggravating me but seriously criticizing me. He has aspbergers so I think he is at a loss at how to deal with me. Nonetheless...

    I have to crawl out of this hole of depression, I cannot even the gumption to go clothes shopping and for things I would need for a trip. Or to go to a travel agent. I'm pretty much stalled. Still in my nightgown at almost 2 pm. Crying a lot. I know I have a lot of anger right now, but thinking back of how I've been treated at this cancer center really makes me super frustrated. If any way possible, I plan to not go back there. I'm thinking about a hospital like MD Anderson or possibly Emory or Duke, just for a second opinion if anything can be done. AFTER my vacation.

    The plan was for me to start taking the Stivarga I already have, that was to start Weds. Ha! I cannot bring myself to take a drug that could very possibly kill me right away from all I've read and at the least cause bleeding and serious skin problems guaranteed to make the rest of my time absolutely miserable. Liver toxicity and failure, leading to death? Nope. So the cancer center has scheduled me appointments for 2 weeks and then again in 2 weeks to monitor that drug. Guess I'll be cancelling all appointments with them.

    I also looked into what kind of help I might get from the social worker at the recommendation of my therapist. She pretty much acted like I was crazy. Also I found out that they are increasing their support groups to 3 times a week, up from once. But now they are going to charge you like an office visit? That is some BS I say. And this is a Catholic hospital! Yep, I'm about done with them.

    Any ways, I am really hoping that I can rise up and get out of this apartment, go shopping and get packing for this trip. I gotta do it!

    Thank you so much for your support and positivity right now. You are a Godsend.

    Take care and message me anytime.

    Karen

     

    i am sorry to hear about your

    i am sorry to hear about your son. males with aspbergers can be to blunt which is the last thing you need at the moment (my friends son has aspbergers and i sometimes have to remind myself it's the aspbergers not him when he is to blunt but it would be to hard for you when you are not well. last thing you need to hear). 

    having said that can he book trip for you? or anyone else? make him/some one else do the work for you, you rest up ready for holiday. 

    Also you might want to try fish oil & vitimin B capusules for your depression. they take a while to kick in but can be helpful.

    Hawaii. Land of the Gods. looks just like what you need. xx

    image

     

  • KarenMG
    KarenMG Member Posts: 109
    #25
    feckcancer said:

    i am sorry to hear about your

    i am sorry to hear about your son. males with aspbergers can be to blunt which is the last thing you need at the moment (my friends son has aspbergers and i sometimes have to remind myself it's the aspbergers not him when he is to blunt but it would be to hard for you when you are not well. last thing you need to hear). 

    having said that can he book trip for you? or anyone else? make him/some one else do the work for you, you rest up ready for holiday. 

    Also you might want to try fish oil & vitimin B capusules for your depression. they take a while to kick in but can be helpful.

    Hawaii. Land of the Gods. looks just like what you need. xx

    image

     

    What a beautiful photo of Hawaii!

    Thanks, I needed to see that. It seems no photograph from there is ugly, except when the volcano was erupting!

    Pretty much I am going with this plan to take the trip, I have to do some shopping and I have not been able to even drudge up the energy to go for one item. I think it is my state of high anxiety and depression. It is getting better now. The idea of the fish oil may work for me now, before all this I tried it and it caused terrible diarrhea, but since I seem to have the opposite problem now it might be just the perfect solution. Vitamin B also caused me strange feelings but things have changed with my body AND brain, so also worth a try.

    I still feel like I want to control as much as I can, so I am going to try to do the booking myself. I am also going to check out a reputable travel agency. Since my son that is aspy is the one going with me, I am going to book separate but hopefully adjoined rooms. I am really anxious about flying too considering the way the world is now, but if I am going I need to stop overthinking everything.

    Secondly, I am truly done with my oncologist and their whole system. He could have not been much worse at delivering bad news. It seemed like he was either tired or angry and just kept repeating how bad things were with no offers of any treatment that could possibly help. It took me 2 days to feel like even talking or moving my body after that, I felt devastated. I don't think I can handle another one of his "chats". They were also very snappy about renewing my pain meds, stated I should have known better than to ask at this time! Yep, I'm done! So, I will seek out another opinion at hopefully MD Anderson or some other highly reputable hospital or Dr.

    On a side note, my CEA has jumped to 712, I found out via an email. No call from the doctor. I also got the written CT results. I am a retired RN so I pretty much can comprehend the gist of that, it sounded no where near as bad as my doctor made it sound. No, he does not know EVERYTHING, he made an incorrect estimate of my survival time way over a year ago. Now I don't trust him any longer. Nuff said about that!

    So hopefully I can go have a wonderful trip, stay as long as I want and come home when I get ready. That should give me plenty of time to relax and get a reset.

    Thanks so much, You and everyone here has been so helpful.

    I finally feel like I know what to do and I am going to live my life as fully as I can for as long as I can.

    Much love,

    Karen

     

     

  • Butt
    Butt Member Posts: 352 Member
    #26

    i drove to an MD Anderson and it is about 1000miles. You may need to find another local oncologist. Things may start going south and you may need to see a doctor. If you go to a hospital they may need to know who is your oncologist. Just try another local guy or girl. I am in favor of MD Anderson. Butt.

  • feckcancer
    feckcancer Member Posts: 189 Member
    #27
    Thank you Karen. you inspired

    Thank you Karen. you inspired me so I have booked myself a trip to Japan in May. Have you booked your trip? As for flying i ask my doctor for valium, few valium, few vodkas next thing you know you are there. 10/10 recommend for travelling. even more blissful in 1st class Cool. roll on cherry blossums n palm trees. xx 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    edited March 2019 #28
    Karen, I'm just wondering if

    Karen, I'm just wondering if you'd need company for that trip? I've never been to Hawaii and it's on my bucket list. Ha ha! Seriously, anyone who is on a long flight please make sure to get up several times and walk around and change your position in your seat regularly. You do not want to get a blood clot.

    Jan

  • myAZmountain
    myAZmountain Member Posts: 417 Member
    #29
    KarenMG said:

    I'm with you!

    Yes, that is my plan. I'm just still trying to pick myself up off the floor after that office visit with Doctor Death. Truly I know there has to be a way to deliver bad news without crushing someone's spirit. I didn't mean sugar coat anything but he really has almost broken me down. Last night I was having thoughts of really wanting to hurt myself and get it over with. I was panicking, my heart racing and my blood pressure sky high. I asked my son to come over and help me out. He thouht it would be fun to aggravate me to get me out of it. It didn't work, he just made me super angry with him. Not just a joking way of aggravating me but seriously criticizing me. He has aspbergers so I think he is at a loss at how to deal with me. Nonetheless...

    I have to crawl out of this hole of depression, I cannot even the gumption to go clothes shopping and for things I would need for a trip. Or to go to a travel agent. I'm pretty much stalled. Still in my nightgown at almost 2 pm. Crying a lot. I know I have a lot of anger right now, but thinking back of how I've been treated at this cancer center really makes me super frustrated. If any way possible, I plan to not go back there. I'm thinking about a hospital like MD Anderson or possibly Emory or Duke, just for a second opinion if anything can be done. AFTER my vacation.

    The plan was for me to start taking the Stivarga I already have, that was to start Weds. Ha! I cannot bring myself to take a drug that could very possibly kill me right away from all I've read and at the least cause bleeding and serious skin problems guaranteed to make the rest of my time absolutely miserable. Liver toxicity and failure, leading to death? Nope. So the cancer center has scheduled me appointments for 2 weeks and then again in 2 weeks to monitor that drug. Guess I'll be cancelling all appointments with them.

    I also looked into what kind of help I might get from the social worker at the recommendation of my therapist. She pretty much acted like I was crazy. Also I found out that they are increasing their support groups to 3 times a week, up from once. But now they are going to charge you like an office visit? That is some BS I say. And this is a Catholic hospital! Yep, I'm about done with them.

    Any ways, I am really hoping that I can rise up and get out of this apartment, go shopping and get packing for this trip. I gotta do it!

    Thank you so much for your support and positivity right now. You are a Godsend.

    Take care and message me anytime.

    Karen

     

    So very sorry

    To hear of your horrible treatment by your doctors--honestly hearing about experiences like yours and many others on this board with the medical community makes me distrust the whole cancer "industry". I have had some truly callous and unkind doctors in this journey, especially Interventional radiologists. Because of his screw ups with ports I can't wear a backpack or purse and have constant pain in shoulders, not to mention my chest looks like it has pot holes.  WHile he is driving around in his 250K Porsche. I hope you have a fabulous time in Hawaii--believe it or not I was born there!  Take in all the beautiful sights , sounds and smells and hope you recieve much Aloha there! Worry about this cancer stuff when you get back!!

  • Butt
    Butt Member Posts: 352 Member
    #30

    I know my advice may sound cruel. You indicated that there are some issues with family members. You may want to talk with local health care agencies and select one and put your info on file because the moment can come that you will need someone care about you. It is very expensive. I already selected a home care agency and met with a local hospice because I had some questions. I know it is hard. Butt. 

  • KarenMG
    KarenMG Member Posts: 109
    #31
    JanJan63 said:

    Karen, I'm just wondering if

    Karen, I'm just wondering if you'd need company for that trip? I've never been to Hawaii and it's on my bucket list. Ha ha! Seriously, anyone who is on a long flight please make sure to get up several times and walk around and change your position in your seat regularly. You do not want to get a blood clot.

    Jan

    Sure!

    Pack your bags...lol. Although right now I'm still trying to pick myself up off the floor after my Oncologist crushed all my hopes and dreams. It's not his fault that I have cancer but the way he put it to me was a message of no hope. I've heard of patients that totally give up after such a "talk". I am going to do my best to not ever to have to speak to him again, but not sure what I'm going to do yet.

    I would love to have a new friend go with me on my big trip, it would be interesting for sure. I've been known to do whatever I feel like it.

    Hope you are doing a little better these days!

    Love ya

  • KarenMG
    KarenMG Member Posts: 109
    #32
    Butt said:

    I know my advice may sound cruel. You indicated that there are some issues with family members. You may want to talk with local health care agencies and select one and put your info on file because the moment can come that you will need someone care about you. It is very expensive. I already selected a home care agency and met with a local hospice because I had some questions. I know it is hard. Butt. 

    Not at all

    My therapist in fact, after getting to know my situation is strongly recommending that I go with Hospice now for support. I am thinking about it but it seems a bit premature. It makes it seem like the end for sure. I don't know if I could justify going on some big vacation and driving my car around doing things AND be a Hospice patient. I worked with Hospice years ago, I don't know how things have changed.

    I'm just amazed at how I was planning things and making an effort to live my life fully but that Doctor just crushed my spirit. After being an oncologist for years, it seems he could learn how to be gentler somehow. I'm really not happy with him right now. Oh well, it's sure not the first time.

    Thanks for the advice but I have already been looking into home care for myself. I know my sons would not be able to take total care of me.

    Karen

  • feckcancer
    feckcancer Member Posts: 189 Member
    #33
    KarenMG said:

    Not at all

    My therapist in fact, after getting to know my situation is strongly recommending that I go with Hospice now for support. I am thinking about it but it seems a bit premature. It makes it seem like the end for sure. I don't know if I could justify going on some big vacation and driving my car around doing things AND be a Hospice patient. I worked with Hospice years ago, I don't know how things have changed.

    I'm just amazed at how I was planning things and making an effort to live my life fully but that Doctor just crushed my spirit. After being an oncologist for years, it seems he could learn how to be gentler somehow. I'm really not happy with him right now. Oh well, it's sure not the first time.

    Thanks for the advice but I have already been looking into home care for myself. I know my sons would not be able to take total care of me.

    Karen

    Karen. f**k that doctor.

    Karen. f**k that doctor. remove yourself from his negativity. book your holiday. and while you are in Hawaii get a 2nd opinion inbetween cocktails & lazing on the beach or by a poolCool

    And here's another suggestion. have you thought of going to Thailand for a holiday/2nd opinion/treatment? I ask this because when i got a total mouth reconstruction i went to Thailand to have it done because the cost was totally out of reach here in NZ but Thailand has 1st class hospitals, has a first class reputation for 'medical tourism', amazing clever and kind doctors, costs 50-70% cheaper plus amazing holiday tropical beaches etc. (the hospitals are like resorts BTW). If cancer treatment wasn't free here I would have  gone  to thailand . added bonus in Thailand massages are $8 for an hour & the food and shopping are out of this world. this hospital is in Bangkok which can be in ya face but is all part of the experience

    Anyway this is the hospital i got my dental work done at. They were recomended by my Thai friend and my NZ friend who does medical tourism tours. they are fantastic. you can talk to them online plus their English is great.  they will put 100% into your care. beautiful people. i love them. As well as cancer treatments & fantastic cosmetic surgey they do things like hyperbaric oxygen therapy etc.

    http://yanhee.net/

    Also this came to my attention via FB & it made me think of you. (heaps of thai stuff pops up on my FB page because Thai friends)  the hospitals it is associated with are reknown for being some of the top hospitals in Bangkok but if you are interested I can ask my Thai friend what she thinks and what their reputation is in Thailand. any way won't hurt to have a look and a chat online to them. xx

    https://akesisoncology.

    Image may contain: outdoor and water

     

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