Brother recently diagnosed
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Sandy,
CC is such a horrible wake up call – it’s sneaky and cruel and catches you unawares. My heart really goes out to you and your brother and his fiance. It doesn’t seem long ago that I was just where you are now, around April this year when my mum was first diagnosed with what is thought to be ‘later stages of cc’.
My mum was in terrible condition just after her diagnosis it was ‘touch and go’ – she spent weeks in hospital with one procedure after another – it nearly destroyed us to see her like that as she has always been a fit and energetic person. She was given anti-ametics which helped control the vomiting and loss of appetite and she became so thin. I have read here that taking fluids off will help relieve pressure and improve problems with nausea so I hope that helps with your brother. At one point, my mum couldn’t even keep down water (even with anti nausea tablets) which was a huge concern and she was eventually put on IVs. Controlling the bilirubin and calcium/potassium balance in her blood, giving her tonnes of fluids seemed to help her and the metal stent was the best thing to alleviate the horrible symptoms of jaundice and has seemingly prolonged her life… I never imagined it possible at the time, but she did rally round, and even began to feel a little like her old self again…. positive thinking has given her back her fight, practically she is prepared: but mentally she is not ready to die yet!
My best advice is remain strong, keep positive and optimistic for your brother, while staying informed on his behalf about procedures and treatments. The lack of eating and general feeling of awfulness (plus the high calcium in her body) made her slightly confused sometimes as well as dealing with the shock – she was overwhelmed by the whole thing. We helped guide her through by reading this website and also found PubMed useful. Thank heavens for internet! We have also been very practical for my mum, helping to get her finances in order, planning for the end of her life, saying the all the things we want to say (and having no regrets) and above all, being with her and supporting her in her choices … Doing these things has helped her get back control of her life..and given her a clear mind to fight for her life. Good luck Sandy, you are doing everything just right.Pippa – I feel so sad that your experience of CC was so dreadful – it could so easily have been my own. From what I know about grief, it comes in many forms – and sadly there is nowhere to hide. I guess shelving it for now is just another way of trying to cope with the shock. Do take care of yourself and your mum and I hope you can find this site useful to talk to others and perhaps one day, and when you are both ready, to find ways to talk about with your mum.
Wendyx
Hi Sandy
My dear aunt, my mom’s sister, died from this disease on 1 July, she was diagnosed 18 May and first signs that everything is not quite all right with her came in April. So yes, the most horrible side of CC is the everlasting question: how can that be? This question sticks with those who are left behind. You just don’t have any time to really process the info, come to terms with it and start somehow to deal with it. Dear person is dead before you understand any of this. I still don’t. I just registered here as a user today, but I have read since my aunt died. I just did not know what I could say. She died, she is buried and gone. And because she lived in other country I even didn’t see her sick at all, there were just those disturbing phonecalls with other relatives. I promised to come and see her as soon as my vacation would start back in July – I never could have thought, it would be too late. Never in million years, but it was.
The shock was so big that me and my mom – we are still not able to really talk about it, to talk about my aunt. We went to funeral and since that we have just talked about everyday life, simple things. I think we sort of pretending it never happened. There is a lot of grief buried inside.
My heart goes out for you.Thanks for the prayers everyone!
The Pet scan is scheduled for next Thursday. We do not know if the oncologist has ever dealt with CC before. We live in a small town in Iowa and do not even have a resident oncologist. They come up here from Des Moines twice weekly. At first my brother’s gastro dr. told us (on 9/3/09) that my brother would have an appointment with him on the 15th and then he would make an appointment with an oncologist. So my brother’s fiance and I are thinking – ok, this is CANCER and we are not going to see a dr until when??? We got the Home health care nurse involved and she was able to get us in sooner(yesterday) – which was a relief to all of us.
Today my brother had a ct scan of his brain. Also had fluid drained off his stomach. We are hoping and praying that he will be able to eat. He was able to drink a small glass of water and a sip of Ensure – but a few hours later vomited. He has lost 12 pounds in the last 4-5 days. He did seem to be in better spirits today, less pain, talking some enjoying some fresh air outside. Does anyone know – will removing the fluid help him be able to eat and drink now? That seems to be our biggest problem at the moment, how long can a person survive not eating or drinking? It’s been 5 days. I am so hoping after a good night’s rest, he will have a little appetite tomorrow and be able to keep some nourishment down.
We have so many questions and fears – just don’t know where to start.
I guess after we get the results from the pet scan we will hopefully be able to at least have a plan for some type of treatment. I guess I should be thankful (and believe me, I am) that today was better than yesterday. We are just praying for more “good” days.
Thanks to all of you for your support, prayers and good wishes.
My prayers and healing thoughts to all of you as well.
SandyDear Sandy,
Thank you for coming here and asking questions. You do need answers. Keep pushing the Dr.’s for more information, never give up. I am so sorry to hear how quickly all of this came up. This disease is unpredictable and it is different for everyone. Your family is in my prayers. You sound like a wonderful sister that would do anything for her brother! This is a difficult journey and I am sorry you have to endure it.
Warm thoughts and prayers coming your way,
Ashlea
Welcome Sandy to the best little club in the world that no one wishes to join. We are so very sorry to hear your brother’s story. May I ask when the PET Scan is scheduled for? Do you know if his doctor has dealt with CC before if so, like more than a couple of times? Possibly, and I am not a doctor, because he has so many other health issues to deal with, he may have had symptoms and thought they were related to something he already has. This first phase of CC, after hearing the diagnosis, is fear and then once you learn more and can get a direction on treatment that fear turns to fight. Wishing your brother the very best and please keep us posted.
You are in my thoughts, too, Sandy. I know how devastated and desperately alone I felt just 2 weeks ago, before I found this site. A lot can happen in 2 short weeks and, even though my emotions are still bounced around on a regular basis as my sister’s diagnosis changes back and forth, I no longer feel alone.
Please come back here often.
Julia x
Sandy……I also would like to welcome you. I am sorry to hear about your brother’s diagnoses and other medical issues and I am hoping and wishing for positive developments coming your way. You will have more information following the upcoming scan. Please, stay in touch.
Many best wishes coming your way,
MarionHi Sandy…glad that you found us, but I am so sorry to hear of your brother’s diagnosis. My father had other health issues, as well, including diabetes and angina. I can empathized with the overwhelming information you are receiving…especially when that information is so grim. There are some very savvy survivors and caregivers on this panel willing to share all their experiences with you. It is important to note that this cancer affects each patient differently.
I wish you and your brother peace and am sending lots of warm hugs.
Jolene
Thank you Jamie!
The oncologist is apparently waiting until after the pet scan to let us know if there are any options. I am afraid the options will be limited due to all of the other health issues he deals with: diabetes, by-pass surgery this past May, heart beat irregularities, the list just goes on and on. While he was in the hospital last week he discovered a swollen lymph gland near his neck, and the gastro dr. is assuming it is a tumor as well. But – we are not giving up hope.
I hope all goes well for you~ Prayers for everyone affected by this horrible disease.Sandy
Aspen;
I am so sorry that your family has to go through this. I send prayers your way for you and your brother. What did the oncologist offer for treatment options? I was told I was inoperable but ended up having a resection after 7 months of chemo. This disease is a monster and very unfair. I am glad that you found this site because I believe you will find lots of support. I will keep you and your brother in my prayers. Take care and God Bless,
JamieI guess I forgot to add that Dr. said the cancer (liver) is inoperable. I do not think Dr is concerned w/ the esophageal tumor. I have been reading posts here and feel so helpless. I pray for all of you and your families.
Just found this site. My 59 year old brother was diagnosed with cholangiocarcinoma AND gastroesophageal cancer (9/3/09) just one week ago! I cannot believe this is happening. He has had so many health issues in the past that this just seems so unfair. For the past 4-6 weeks he has had stomach pains and sent from one doc to another. Then swelling and the pain was so severe he went to the emergency room and they drained the fluid. Three days later he was told he has this cancer and that it is stage 4 already? How can that be? 1 week ago he was ill, but now not eating or drinking. We finally got to see the oncologist today. He has ordered Pet/Scan, brain scan and will tomorrow take more fluid off. We are praying that after the fluid is drained he will be at least able to eat or drink. I have never seen any disease so devastating in my life. I have done a little research on this cancer and realize that we probably won’t have much time left with my brother, but diagnosis 1 week ago to this?
Please pray for us!
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