Re: Survival

Dear friends, it is only a couple weeks ago I was on top of the world and it seemed everything positive was happening to me.  But something has changed and I now feel depressed and trapped, like someone has taken away my security  blanket and left me in a hazed confusion.  Physically I get stronger slowly every day but emotionally and mentally I feel I am back pedalling.  Is ths normal?

.... because I can ....

Re: Survival

Dear Sandie, this can be a reaction to other MEDS or a delayed reaction to the whole roller coaster ride. I would give your ONC a call and tell him what you are feeling and maybe a little boost is needed, he will know best. Hope you are feeling up to par again real quickly. Please keep us posted.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Survival

Hi,
If you regard cholangio intrahepatic CA that you had is a chronic disease, and manage the disease as doctor required you to do so,;keep up to date on the  new treatment and potential drug development to "cure" this CCA.
Then you are an informed patient and you will not regret about the future outcome even if it is not what you exactly anticipated.
Others will come in soon to cheer you up.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Survival

Dear Sandie,

I am sorry to hear how you are feeling right now. I can't really offer any practical help from experience but I wonder if it may be worthwhile you asking Dr Giles here on the website about your feelings right now? I know that he has helped many of our members here and maybe he could be of use to you too? It was just a thought I had, and if so he can be contacted here -

http://www.cholangiocarcinoma.org/ask.htm

I hope that you can get some help with this and know that we are all here for you.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Survival

Sandi...    It may help you to understand that sudden illnesses and/or radical treatments are traumatic to the body and to the mind. Often times, once we are able to identify the cause for the way we are thinking, the process of moving through it becomes easier.  Most likely you are in distress physically and emotionally and while your body is healing, your mind also needs to follow suit.  Know that it is normal to experience fear, guilt, anger, anxiety, and depression, feeling overwhelmed, detached, numb or apathetic.  You may also have outbursts you can’t control.  All is normal given what you have been through.  Be kind to yourself. Allow yourself to regain strengths emotionally and physically.   You deserve it.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Survival

Marion
I have seen my doctor today who has put me on a short course of antidepressants to help me through.  Your words are so full of understanding and I cannot thank you enough for your invaluable support.  With love Sandie x

.... because I can ....

Re: Survival

Sandie....You are welcome.  Before you know it, things will appear brighter again.  Please, stay in touch.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Survival

Sandi,
You are in my prayers. We are here for you. If you can find peace in God's word I would encourage you to find peace and strength there  God's word has helped me and my family tremendously. 

Praying for you.
EDH

With God all things are possible. Believe!

Re: Survival

Hello again special friends.  It has been a while but I am delighted that my first post chemo and radio scan was clear, although I do have some scar tissue from the radiation and alot of pain in my shoulders and arms for which I will have physiotherapy.  I am also on antidepressants to help me recover from trauma.  My family and I have been on an awful roller coaster ride but life is bright again and i pray that it could be the same for anyone suffering from this dreadful disease.  xx

.... because I can ....

Re: Survival

Yea! Sandie, the kind of post we love to read! And don't buy anymore tickets on that roller coaster. Can't ask for anything better than clean scans. Keep up your courage and hope and we wish for good news to keep coming from France!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Survival

Sandie.... Congratulations on the clean scan and congratulations on enjoying life again.  Thanks for sharing your inspiring thoughts with our community.  Stay well, dear Sandie. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Survival

Great news Sandie!!  Glad to hear it and hope that you will have many more clean scans in your future and life stays bright!!

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Survival

Sandie,

I am so happy to hear the fantastic news. How wonderful to feel that life is once again sunny and bright!!! So, so happy for you.

Love, -Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Survival

Sandie,
So happy for your good news...congrats !!!
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Survival

Sandie,

Hang in there, thanks for sharing your good news, +ve news always gives me hope for my wonderful mother.

Re: Survival

Hi Sandie,

What great news! Thanks for sharing it with us all and we sure love hearing news like yours!! Hope that the physio works well with the pain in your arms and shoulders.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Survival

Dearest dearest Friends
Today I received the wonderful news that following my end of first year scan ... I am clear.   Wow, I am the happiest lady alive.   I have so many people to thank for helping me to get to this wonderful milestone ... my so precious family and friends, my incredible medical team ... thank you especially to Professor Paineau, his amazing team, Charmayne and her amazing gang of nurses at the Rene Gaudechau in France ... my teddy bear who absorbed so many tears and also to my worldwide cyber support group ... YOU, each and everyone of you who read this.  This site is amazing ... tears, joy, sadness, happiness, but above all you give hope, support and love.  If there is one thing I can give anyone who goes through this horrendous CC journey from hell, it is this, please, please find something to laugh and giggle about every day ... it's not a cure but the best tonic every invented.  Thank you, I love living. xxx

.... because I can ....

Re: Survival

First time in a while I've checked the boards, and this is the best news one can expect to see!! Congratulations! I have a 1.5 year scan in 2 months, hoping I have same news as yours!!!

Derin

Husband to Eileen, Dad to Hunter (16) and Sydney (14)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: Survival

Great news!!  Thanks for sharing!


-Susie

Re: Survival

Sandie....Congratulations on all fronts.  Please know that you also have shed hope and love along the way.
Love right back at you.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Survival

Sandie,

What great news.  Congratulations and may you have many many more laughs and clean scans!

XO
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Survival

Dear Sandy....

CONGRATULATIONS....Thanks for starting my day with a huge smile smile

Deane

Re: Survival

I am checking the messages over a period I missed and notice this one from Sandie.  I am wondering how you are doing?  I, too, (and many others, too) had a hard time dealing with this diagnosis and the following physical and mental roller coaster.  Let us know how you are...it has been 9 months (I'll check to see if there are other threads with you in it), but I am so glad to hear about this scan and to know that things are looking brighter for you.  The diagnosis really is an upfront visit with mortality, but there is a lot of hope and support here.  I hope you continue to do well......

Re: Survival

Dear Chezwright
Thank you for your message.   I know others will read this too, so I will be
honest in answering your question as to how I am.   Physically I feel fine, I try to exercise every day and eat good healthy food and love living.   I never say no to an opportunity and I laugh and giggle every day.     Mentally is a different story ... I don't know how to describe how I feel ... my doctor says I have post traumatic stress disorder.  I have a wonderful network of friends and family and feel surrounded by love and to the world I try to be happy and always smiling.  Yet at night the tigers come bringing their endless questions ... will it recur, why did I survive, why can't others be so lucky, why does it hurt to be alive, why do I feel lost .... ?   I now have counselling and take antidepressants and sleeping tablets. I like to believe that this is another part of my CC journey and if I can overcome this part, which I will, and understand it, maybe I can help someone else who travels this painful path.  My motto is .... because I can .... everything I do is simply because I can and I desperately want other CC patients to one day say the same.  Thank you for asking after me and I so hope you are doing well too.   With love
Sandie x

.... because I can ....

Re: Survival

Dearest Sandie,

I am so glad to hear that physically you are doing well and that you recognize that you need help with your mental health.  Sounds like you are doing the right things to get through this time.

As far as why you and not others...that is a question that no one can answer.  I ask myself the same thing at times, but I just have to accept that this is part of a bigger plan. 

Worrying about recurrence is normal, but letting it keep you from enjoying the moment is probably not good.  Seeing a counselor is a great idea and anti-depressants should be helping you.  If they are not, if the tigers and endless questions do not stop, you may want to ask for another medication.  There are many and not all of them work for all people, but there is one out there that should help you.

I want you to know that I am here for you.  Please feel free to contact me by email (randi.barrell@gmail.com).  I would love to hear from you.

Thinking of you and sending lots of hugs.
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.