Not sure where to turn
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Hi, hope everyone is okay, or as okay as can be today.
Sending all my love if you are having a tough day and
I thank you so much for the support I have been shown.Thank you Christina! I am glad we were of help. No matter what your age, if you are close to a family member the experience can be the same. I have gone through the ups and downs in a short period. I would consider to be in the day to day stage. She is doing well today, but as I said, it’s a day to day journey.
All the best.Thank you Tia and Nancy.
I wanted to take time responding as I truly valued your words.I am re-reading your words today again, THANK YOU.
My dearest mum was worth every bit of this pain, I don’t think my words could do her justice and they way she handled this blooming cruel disease was inspiring.Tia, how are you feeling today? Nancy, how are you feeling today?
I honestly cant say how much I needed to re-read this today. Miss her a lot at weekends. But you are both right the years I got are worth this. I also need to grow up as I have younger siblings.
To everyone fighting today my prayers are going to you, I hope I don’t appear selfish, just miss my mum. Nancy thank you for ‘it is not a place to stay’, your mummy sounds similar to mine if that makes sense. Tia you sound like a wonderful daughter, I wasn’t sure what stage of the journey you and your family on from your message.
I am probably not much help at the minute but if anybody needs to rant or anything please stay in touch.
All my love to you all xx
Dear Christina,
Please accept my condolences for the passing of your mum. I lost mine too in October2015 and I just wanted to say I know how you’re feeling. I feel completely lost without her, like a piece of me is missing. What I’m grateful for is the amazing relationship we had and I know this grief never ends but it does change. Its a passage, not a place to stay. It’s the price of Love….Thinking of you Christina x
Thank you Christina for sharing your story.
I understand your journey through this, and experiencing the same with my mom.I just wanted to express my gratitude of you being part of the forum, and a day at a time. It is okay to miss your mom, and cherish everything from childhood on. You are an amazing daughter! It is okay to take the time and renew.
All the best for you and your family.
Thank you all so much.
Reading tonight has really helped. I think the shock
Or whatever it is that gets you through week one
Has ended. I felt very alone last night even though
I was surrounded by people. Bizarrely I miss
My childhood.
I honestly hope my mums story and the fact it was 2011
The first time helps anyone.
I feel selfish saying this but I just miss her.
I actually feel Hope from you all as I know you understand and I
really am sending thoughts and love tonight xDear Christina,
I am so very sorry indeed to hear of the passing of your dear mum. Please accept my sincerest condolences. Having lost my dad to this cancer back in 2009 I so know the pain that you feel right now and wish that there was something I could say that would help ease your pain. Please know that we are all here for you and my thoughts are with you and your family right now.
Hugs,
Gavin
Dear Christina,
I am so sorry to hear of your mum’s passing. You and your family have my deepest sympathy. Try to take comfort in knowing that she is no longer suffering or in pain. My thoughts are with you at this sad & trying time. Take care.
Hugs,
DarlaDearest Christina, I am so sorry to read about your Mum. Please know that she is now at Peace and whole again with no illness. In time all the tears will turn to happy tears from wonderful memories.
I’M STILL HERE
I’m at your side each night and day,
In your heart is where I’ll stay.
You can feel, see or hear, I am not gone, I’m always near.
I’m the colorful leaves when fall comes round,
The pure white snow that blankets the ground.
I’m the first bright blossom you’ll see in Spring.
The first warm raindrop that April will bring.
I’m the first ray of light when the sun starts to shine,
And you’ll see that the face in the moon is mine.
I’ll whisper your name through the leaves on the trees,
And you’ll feel my presence in the soft summer breeze.
I’m the salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I’m the smile you see on a baby’s face.
Just look for me, I’m every place!Hi,
Thank you from bottom of heart to you all.
Mum lost the battle on Friday.
The funeral was yesterday, she was so loved.
I had promised her no more pain and I hope we honoured that.
Going over mind and what if’s and trying to stop doing that.
She had too much going on.
Just miss her and we are numb.
I hope the fact she was diagnosed in 2011 with gall bladder cancer and it’s now 2017 provides hope to some people.
She was the most amazing and beautiful soul, in and out, she helped so many people.
The number of people yesterday who said where can we go now for help was unbelievable.
It was so touching.
Thank you all so much and I hope today finds you with hope and love x xHello Christina,
Welcome! My mom was diagnosed with intra CC a few months ago and surgery is not an option. I wonder if that is good in a way due to her age and other underlying health issue. It was very difficult to hear the news and want more treatment options offered other than chemo. Definitely seek several oncologists treatment plans and really try to understand the dynamics of your mom’s health, as I see that each CC patient needs to be looked at individually. I don’t think there is a one treatment fits all. Let her have a normal life as much as possible, and still don’t dismiss good nutrition and being positive. She is lucky to have you for support.Christina….I don’t doubt that the medical team is terrific, however obtaining additional information from a center treating a high volume of cholangiocarcinoma patients is the key.
AMMF UK provides a list of Specialist Cancer Centres
The Christie, Manchester
The Christie NHS Foundation Trust, Wilmslow Road, Manchester, M20 4BX
http://www.christie.nhs.uk/For information on assessment of hepatobiliary patients, go to: http://www.christie.nhs.uk/our-standards/clinical-outcomes/disease-group-annual-reports/hepatobiliary.aspx
For a report on hepatobiliary oncology services, go to: http://www.christie.nhs.uk/media/874405/Hepatobiliary%20-%20main%20doc%20JV%20Agreed.pdf
For referral information go to: http://www.christie.nhs.uk/about-the-christie/information-for-gps/nhs-referrals.aspx
The Royal Marsden Hospital, Chelsea and Surrey
Chelsea: Fulham Road, London SW3 6JJ
Surrey: Downs Road, Sutton, Surrey SM2 5PT
https://www.royalmarsden.nhs.uk/For more information, go to: https://www.royalmarsden.nhs.uk/your-care/cancer-types/gastrointestinal/upper-gastrointestinal
The Clatterbridge Cancer Centre, Liverpool
Wirral: Clatterbridge Road, Bebington, Wirral CH63 4JY
Aintree Liverpool: Lower Lane, Fazakerley, Liverpool L9 7ALhttp://www.clatterbridgecc.nhs.uk/liverpool
For referral information, go to: http://www.clatterbridgecc.nhs.uk/professionals/clinical-referral
– See more at: http://ammf.org.uk/specialist-treatment-centres/#sthash.mxLZ6wTR.dpuf
The Beatson Cancer Centre, Glasgow
1053 Great Western Road, Glasgow, G12 0YN
http://www.beatson.scot.nhs.uk/(Lead centre for the delivery of non-surgical cancer care for the West of Scotland)
For more information on Upper GI cancers, including cholangiocarcinoma (bile duct cancer) go to: http://www.beatson.scot.nhs.uk/content/default.asp?page=s18_1_11
For more information on seeking a referral or a second opinion, click here
– See more at: http://ammf.org.uk/specialist-treatment-centres/#sthash.mxLZ6wTR.dpuf
http://ammf.org.uk/specialist-treatment-centres/
Hugs,
MarionDear Christina, thank you for the update on your Mum and so glad that “things” have been started. Please tell her Doctor about the light headiness she is having. Since no treatment has begun that would cause her to feel that way it could be anything. With this strange monster the Doctor needs to be aware of anything different that is happening. What I don’t understand is the length of time elapsing to get a treatment started. When my husband was diagnosed treatment began immediately like in a week. Cholangio waits for no one.
I am happy that Mum is mentally doing better now. It takes some time to get used to this rare and strange Cancer.
As to what is normal? Welcome to your new normal that no one wants to have. The best advise we can give is to just take each day, one day at a time. Hang in and hang on and know that we have had quite a few members here who were Stage IV and are doing quite well. Hope and Miracles!Hi,
First Matt, thank you so much, cant express how much hearing from you has helped. I have not been on in a while as it was a pretty bad month for my mum in terms of how she was feeling mentally but a turnaround and your post will only help further. Hope wherever you are the slow descent out of winter is starting, it is good to see a little sun.
Thank you everyone for taking time to respond, I honestly cant thank you enough and I hope today finds you all having a good day.
My mum made it to oncology appointment last Monday and the fact of getting out has made a massive difference to her mental well being. Since diagnosis it seemed that she was slipping away mentally but there seems to have been a turnaround in that area. She made two short sessions to the community centre where she volunteers this week, she amazes me!!
The Oncologists attitude and treatment of my mum was so wonderful, as he always has been. She asked could she give him a hug.
Basically she has been placed on steroids, which seem to be helping, with a return date back in two weeks when her strength is up to review treatment options.
I have been researching a lot (thanks to all of your advice) and will keep doing this, I have registered onto clinical trials websites also. I was glad to get my mum to even go to the first appointment so was treading lightly.
I have lots of questions, it is quite difficult to predict what a given day is going to look like but I take it that is normal? Also my mum has said about feeling quite light headed a lot, any advice on this?You are all amazing people for responding. My family are new to this diagnosis but not to cancer, but anything can offer even if just for a rant please contact me.
Welcome Christina. I am a fellow patient, diagnosed in December 2013 and still here. There is hope. Most people start out with “standard” chemotherapy with a goal of surgical resection. It is extremely important to seek care by a team experienced with cholangiocarcinoma and to keep pushing against the odds. Seek as many opinions as you can and don’t take no for an answer.
You can see my story here: http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=11456
-Matt
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