June 3, 2010 at 6:23 pm #38719gavinModerator
Welcome to the site, although I am sorry that you had to find us all. I’m a bit late to your thread, but I just wanted to join the others in welcoming you here. Please keep coming back here as we will all help you and support you through this as best we can. So feel free to ask any and all the questions that you will have and someone will be able to help.
I can’t really add much to what has already been said to you. I do know how hard this is all to deal with as I was my dads carer during his fight. He was diagnosed back in the summer of 2008 with inoperable CC and I was right besdie him throughout it all. I think if you can gain access to your mums doctors and can speak with them on her behalf then that will help you with understanding what is going on and what treatment options may be available. I was at every doctors app that my dad had and it certainly helped me in knowing what was going on and it also gave me the chance to ask questions about my dads condition and his treatment.
You are doing the right thing in coming here and seeking help and advice, so please keep doing so. I do know how hard this is, but you are doing a great job for your mum here.
My best wishes to you and your mum,
GavinJune 3, 2010 at 2:58 pm #38718devoncatSpectator
Welcome to the site. When I was in the states for a bit (my family is from SC but I now live in Sweden) I headed to UNC hospital and met with Dr. Sanoff. She was wonderful. I got her name on recommendation from Carol on this site.
There are other treatments out there. I dont know anything about swelling since I have to had it yet. Our wonderful Sophie has been having her abdomen drained every week for over a year now. Use the search function and you can find several people who have had this problem and information on what the did about it.
I see you are from Wake Forrest. I swear that there is a doctor in Wake Forrest doing Sir spheres or some other treatment for cc. So you might want to search the forum for wake forrest as well.
My husband is 100% involved in my treatment and goes with me to all my appointments. It is amazing how we often hear the same conversation, but what I hear is completely different to what he hears. I guess sometimes I stick my head in the sand. He often communicates with my doctors without me. IT is needed and I would recommend getting it sorted out like that for you and your mom.
KrisJune 3, 2010 at 1:48 pm #38717darlaSpectator
Welcome and I am glad you have come here as the support you will get will help you through all of this. I can’t add much, but I do agree with everything Marion and the others have said. If nothing else, your Mom deserves the best care available and her comfort is important.
Thinking of you and hoping for the best.
DarlaJune 3, 2010 at 2:38 am #38716marionsModerator
Laura…your Mom sounds so very fragile and I do understand her reluctance of receiving any news especially, news she anticipates not to be good. But, that is not always the case. Your Mom deserves the best care available to her especially, when it can help ease or even eradicate her symptoms. You will be the right person to filter information for her and present it in a kind and caring way. You are a wonderful daughter.
MarionJune 3, 2010 at 2:27 am #38715
I really want my mom to fight harder for herself, I feel like she is so scared of what they might say so she refuses most treatments recommended ( even if they won’t keep her in the hospital) she is so worried they might that she doesn’t want any test … We were suprised she did chemo/radiation at all , she just lost her own mother, my grandma, to Lymphoma less then 2 yrs. ago. My mom and I went to see my grandma practically everyday , and it really broke my mom watching her own mother die such a short time ago . I am going to talk to my mom about her medical choices because if I can help with that and get more info she could be better off because the fluid in her stomach and legs is causing her alot of discomfort . Thanks for the advice!!June 3, 2010 at 2:14 am #38714marionsModerator
Laura….I don’t believe that your Mom will have to stay in the hospital because; many procedures are handled on an out-service basis. There are ways to deal with the fluid retention something, a physician must decide on. I like your idea of having access to the doctors treating you Mom. You may need medical power of attorney to do so. It is easy to obtain in fact, hospitals generally have the forms for their patients and you may even download it from the internet. Ill people easily are overwhelmed with the multitude of information coming their way. This can lead to poor decision making. It is always best for someone else to step in and advocate for their loved one. When handled with sensitivity and care I believe, most of us welcome a person we trust to become involved in our healthcare.
Good luck and please, stay with us.
MarionJune 3, 2010 at 1:22 am #38713
Thanks you guys,
They tried the resection @ UNC in chapel Hill , North Carolina. The first dr. she saw gave no hope of even possibly doing a resection, so we were just very relieved when her new doctor seemed so optomistic and tried it. The hospitals in Raleigh are very good. I have seen some hopeful stories from the Mayo clinic and alternative treatments , but my mom really doesnt even want to recieve information from her dr. about how she is doing… which makes it harder to understand. I think getting her permission to speak with the dr. on my own may be the only way we get more information about how she is . I just took some time off work so I can stay with her more . It is hard for the doctor to do his job when she refuses test , but I defiantly dont blame her for not wanting to stay @ the hospital for the rest of her life . Thanks for the prayers folks . Will keep ya updated , and thanks again .June 3, 2010 at 12:53 am #38712mlepp0416Spectator
Let me welcome the others in welcoming you to this site. I’m so glad that you registered on this forum. You will find lots of friends and will get lots of support. Everyone on this site is so wonderful. You will get a lot of useful information, just from reading the posts.
My husband Tom has been fortunate that he has never experienced the swelling of the abdomen, so he is lucky in that respect. He has however experienced swelling of his feet, they got so large that he couldn’t hardly walk. Found out later that he is allergic to hydrocodone. So we avoid that painkiller.
Prayers are coming your Mom’s way from Wisconsin.
Go with God and KEEP KICKIN’ THAT cancer.
MargaretJune 2, 2010 at 5:15 pm #38711lainySpectator
Welcome, Laura to our wonderful family. My suggestion would be to get a second opinion. I don’t understand making her wait 2 weeks when she is that swollen, it has to be so painful. So very sorry you and your mom have to travel this road but glad you found us and please keep us posted. P.S. Where are you located? Are you near any Cancer Hospitals?June 2, 2010 at 3:56 pm #38710jennifersMember
I also do not have anything to add about the swelling, and this is a symptom my Dad has not yet had to deal with. He was also not a candidate for surgery (diagnosed in January), and has been doing chemo (on and off with a few complications along the way). I just want to welcome you here, and tell you that you will find a lot of support from very knowledgeable and caring people… it’s helped me being here, and I hope it does the same for you.
JenJune 2, 2010 at 10:39 am #38709katieloumattMember
Please let me welcome you to our ‘family’. Sorry you have had to find us and sorry for your Mum’s diagnosis. This has a huge impact on the patient and their family whatever path of treatment is followed.
My Dad was diagnosed May 2009 and had a resection end of June 2009 but sadly it was unsucessful and he died 9 days later……..
I didnt join the board until August but have had a tremendous amount of support and friendship which I know you will too. Everyone is very welcoming and knowledgable in different areas.
I’m sorry I cannot help on the ascites/abdominal swelling but I do know if you put that into the search engine at the top of the page plenty of other posts will come up that cover that.
Good Luck as you and your MUm continue her journey along this path….
May I ask which hospital she is being treated in? I live in England but my Dad’s treatment was at Shands hospital in Gainesville Fl.
Please come back and let us know how your Mum is.
KatieJune 2, 2010 at 1:21 am #3609
Hello, I usually dont register with forums , but the stories I have read here have given me insight and comfort . Thank you .
My moms diagnoses was/is shocking ( Oct.22 09) , she was jaundice for a few weeks and FINALLY went to the ER , and a few days later we found out it was cancer… bad cancer . She was sent home with a temporary stent. They scheduled an operation on Dec.1st for a possible resection, but when they went in, they found that too much of her liver was cancerous, they removed her gallbladder. and they couldnt put in a metel stint at that time so they tried it the next day . They were unable to do the stent that day because one her lungs collapsed when they put her to sleep , she ended up in ICU for 2 weeks taking oxegen . They put in the metal stent when her oxegenation went up and released her Dec. 18th from the hospital . She recovered pretty good from that, then started chemo/radiation in Feburary . That was terrible for her , she was extreamly sick and tired during the whole process . They did a CT scan 2 weeks ago and said her liver tumor shrank a little but didn’t seem too excited about it , they ask her questions about the swelling in her abdomen and legs and said they could run some test but she refused and has another appointment in 2 weeks .. humm??? my mom has all of a sudden ( over the past few weeks )gained alot of fluid in her abdomen and legs but she is skin and bone over the rest of her body . ( They gave her water pills and uped her dose of oxycotin) She tries to act like she is fine but I am SO worried. She has been really tired sleeping 15 hrs out of the day but seems more like her old self now… swollen stomach and all. I don’t know how to feel, I have seen other post about swollen stomachs on here , I guess this is a pretty normal thing ? I wish I knew more about what is going on . Sorry for my rambling.. I am glad I have somewhere to talk about this.
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