Bazel
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Hi Robert,
Sorry you had to find your way to this site, but you will find lots of support and great information here. You will get multiple comments, but here are some basics for a newcomer.
1. If you are ultimately diagnosed with cc understand that it is a rare disease and many oncologists have little to no experience treating patients with cc. You are strongly encouraged to find an ONC who has experience treating patients with cc. This website has resource to help you find an ONC with cc experience.
2. Second opinions are strongly encouraged. Because of how rare this disease is and the lack of experience in treating cc, a second opinion is encouraged. While you may or may not be in an area with a Dr. who has significant cc experience, most of these Dr.Amsred,
You asked 3 specific questions and when I found myself in your situation I really wanted my specific questions answered. So, I am going to give a go at offering you answers to the questions you asked.
1. How long is a very difficult question to answer, we have seen very slow moving versions of cc and others that move quickly or secondary medical issues that cause decline. If your mom has declined treatment, then engaging with hospice is a direction you will want to likely pursue as they will provide comfort care, specifically pain management. Pain, fatigue and digestive issues are the common issues that may impact your mom
Ashley,
My sympathies to you and your family. I hope that knowing your mom is at peace will bring you comfort in the days ahead.
Bz
Katie,
My dad had 2 chemo-embolization and his number one side-effect was fatigue followed by chills. Lasted a good 3-4 weeks after each procedure.
Bz
Grace4Five,
You’ve come to the right place – vent away and allow yourself to feel your moment of sadness. CC is a very challenging disease and the fact that there really seems to be no pattern or consistent trends is what contributes to the complexities in providing treatment.
It sounds like your mom has a good medical team in her corner who are watching her closely and will offer treatment options where possible. As well, I suspect you will have others here share some thoughts on what a lung mets might mean in the grand scheme of cc.
Sometimes gratitude for what we have seems insignificant when compared to our hopes – but in the end gratitude and grace can make this journey much more peaceful.
Bz
Adamaria,
My dad passed from CC and my mom has dementia so I have perspective from both sides of the challenge you are facing. This is one persons opinion but I would suggest that you need to really assess the degree to which your mom can make informed decisions about her health care; can she fully comprehend the information being shared by her doctors, does she understand the consequences of the decisions she is making and lastly does she have the cognition to respond appropriately to questions and follow instructions? The answers to these questions may strongly influence the care approach you may have (or want) to take with the CC.
Bz
Jules,
Sorry you are facing this health crisis – and with your experience it is to be expected that you may be fearful. Use your knowledge to your advantage, share your family history and be insistent that proper testing is performed.
Bz
While ultimately a personal choice – with 20/20 hindsight … had surgery been an option for my dad I (now) know I would have encouraged him to follow up with chemo. Most of the standard cc chemo protocols seems to be quite manageable (my dad had few side effects from chemo) and with what I have learned I would have rather he take out that insurance policy.
Just another opinion to ponder …
Bz
UCLA,
I am going to somewhat echo what others have said, but maybe with a slightly different tinge.
I am a bit (ok .. a lot) of a control freak and I am very analytical by nature. When my dad was dx
I echo the words of those who have posted above. The cc family is just that a family – and while I can’t say I “know” you, I feel like I do. You were in my thoughts this weekend and your post may answer why. I don’t know about others, but there are just times when a cc family member is very active in my mind and I know they need prayers for strength and healing.
I will add another thought … and that is thank you for being a teacher. The cc experience comes with many ups and downs and though it’s been over 3 years since my dad passed, I still come here (and try) to offer advice when I can, but mostly I feel it is I who benefit. I learn many valuable lessons by the examples demonstrated here and the lessons I have learned from you have been many.
You can count on continued prayers being lifted up in your name!
Bz
Lainy,
Sometimes it’s too easy to convince oursleves that our efforts won’t matter, but they will and do – as you are prooving! And chiming in on Marion’s comment … here is a quote I keep posted by my desk …
“If you think you are too small to make a difference, try sleeping with a mosquito.”
Hans,
Again … thank you for continuing to share Kris with us. When I first came to this board Kris was already here – and like so many I found great comfort, hope and knowledge in her posts. At a personal level I found her so very interesting as she was living a life I had only dreamed of; namely living abroad. And, I was always curious about how a girl from South Carolina learned she had cc in Scottland and lived in Sweden. From her posts, I could always see how Kris relished her life with you through, but like so many people “home” holds a special place in our hearts – and so it appears to be true for Kris as well.
May you have safe and peaceful travels as you take your Kris home.
Bz
