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FormerMember over 16 years ago

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Whether you’re here to talk to others, join a group, ask questions or just listen, everyone is here to offer emotional and practical support to help you with your cancer journey.

We know it can sometimes be confusing when you first arrive, with lots of forums and groups to choose from. So this thread is to welcome you, make friends and help you find your way around the site. Whether you are a patient, family member, friend or a carer, feel free to post any thoughts or questions here and other Share users will be happy to help you navigate around the site and find what you are looking for.

FormerMember over 16 years ago

Hi CJM

So sorry to hear about your dad's illness. I am not a medical person, but I think the biliary tree is the tubes etc that carry bile from the liver to the bile duct? And from what I can see on the cancerbackup part of the site, it is usually a different form of cancer that strikes there. How is your dad coping with his illness and what treatment are they giving him?

Did try to answer on your other thread, but for some reason my answer disappeared!

Love & hugs HarryB x

FormerMember over 16 years ago

Hi HarryB,

Thanks for responding, I was beginning to think there was no one out there who knew about this type of cancer.

As you have read my post you will probably know hes not coping too well due to all the set-backs. He is having an aggressive form of chemo (had one lot so far) and is due to have his second lot in a week or so but that is dependant on his recovery from the drug build up in his system and also the so-called superbug he has at the moment (I believe they said it was E-Coli).

He hates being in hospital and is terrified of being left alone at night, they are strict on the visiting times 2pm - 8pm. At the moment he has convinced himself he is not coming out which is so hard to see. He is very emotional and crys alot, constantly want cuddles from my mum. All we can do at the moment is try and reassure him. The Oncologists say they want to try and shrink the tumour then perhaps operate if it gets small enough but who knows.

Its just nice to be able to talk to someone on here,

CJM XX

FormerMember over 16 years ago

Hi, I don't usually go on forums but when i came across this one i just had to. My gran is terminally ill with 2 brain tumors.She has been in hospital for over 6 weeks they are not doing any treatment. So now I am having to come to terms with the fact that she is actually dying....very hard to take in ....feel so helpless and sad for her...she is one amazing gran ...the best.... my mum and me are trying to get her home to be in her own suroundings so she can be as comfortable as possible....I am looking forward to talking to others in similar situations...its all a bit too much to take in for me i am her only grandaughter ...we are really close.....xxxxxxxx....very sad to watch such things happen to a loved one.......xxxxxx

FormerMember over 16 years ago

Hi Natz,

Many of us never did forums before this so you are in good company! I notice you have already found the Brain Tumour thread, so you have started off well. Just wanted to say Hello and Welcome, and hope you find the site useful. I am sure you will get a lot of support

Love HarryB x x

FormerMember over 16 years ago

Hi Natz

Sorry to hear about your Gran, what a cruel disease it is. (Please feel free to read my profile) I have recently taken my Mum who has terminal cancer home. It's not easy looking after a loved one, watching them deteriorate day by day, but by the same token very rewarding knowing that you are taking great care of someone that you love so dearly. Good luck in looking after your Gran, I wish you all well Cjxx

FormerMember over 16 years ago

hi cj
just wanted to tell you that i read your profile and the one thing that stood out to me is that you are a true credit to your mum and i would say she is very proud of you and appreciates all that you are doing to help her. i will include your family in my prayers take care lisa xx

FormerMember over 16 years ago

hi natz i am glad you are getting support from the forum. i found myself here in january last year when my dad was diagnosed with pancreatic cancer. sadly they stopped my dads treatment as he was not responding. my lovely dad passed away in june last year. my mum and i nursed dad at home which was where he wanted to be. i am sure you will be very brave for your gran. there are lots of specialist nurses who can and will support you if you nurse your gran at home. my dad passed away very peacefully with me my mum and my husband at his side. you will gain strength by focusing on doing everything possible to help your gran. it isnt easy but it sounds as though you can support your mum as well. i wish you well love cazzy x x

FormerMember over 16 years ago

Hi All

Hmm - how do you start? The bare bones I suppose - then the gaps fill themselves in... I'm a 46 year old woman - diagnosed with terminal cancer about 5 weeks ago.

I don't know the technical terms - as basically I've avoided hospitals and medical speak as much as possible. At the time 3 months was suggested as my likely span - so on that reckoning I'm a third of the way through.

It began in my lungs, spread to my brain (cerebellum), my vertebrae and rib. Initially I refused all treatment, opting for quality of life, rather than spending my time dragging round hospitals having various treatments to prolong it all a bit longer.

I have just begun to arrange a biopsy with a view to looking at chemo and/or radiotherapy as a means of palliative care - but feel myself moving back to the my original position - do I really want to submit my last bit of time on this earth to hospitals and the side effects of therapies. And no I don't think I do.

I'd be very interested to hear anyone else's experiences or thoughts on taking up treatment or not.

Best wishes

Isy

FormerMember over 16 years ago

Hi Isy
My heart goes out to you,hun
And just wanted to acknowledge your post
I,m afraid i cannot advice you,my dad had this terrible MONSTER and no treatment was available to him,but i,m not sure he would,ve taken it even if there was for the same reasons you have given.
Hopefully someone who has had to make this decision may be able to help you better
I can only imagine that this is a difficult decision,maybe talk through the pro,s n cons with your consultant!?
much love n hugs to you
Sheree xx
P.S have you chosen your "site name" after the Lynard Skynard song?

FormerMember over 16 years ago

Hi freebird

I'm so sorry to hear of your illness and prognosis. 46 is much to young to be facing this, yet sadly there are so many facing it and some evn younger. I can only hope you have longer than you think, but I can understand that time isn't everything it's quality of life that counts just as much. I have never been in your situation, so cant really say what I would do. I have my theories, but who knows until you are actually "there". My husband opted not to have further chemo, once he knew there was no cure, and he hasn't regretted that decision. He was advised his prognosis was about 12 months, and that was 13 months ago. We are now on borrowed time, and he is very frail, but he has dealt bravely with his illness, and has not had to struggle too much with side effects & hospital visits.

Only you can make these very difficult decisions. I hope you have lots of support around you and I hope you can still enjoy each day to the fullest extent possible.
Warm Hugs
HarryB x x

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