August 30, 2009 at 7:12 pm #30972
Kris, you are sooooo right! That’s why T always says, attitude is everything. The doctor had told us, when T had his big Whipple, that all the remarks the nurses made were things like (he never complains), (he is always smiling), (he is such a nice man) and (no matter how he is feeling, in the morning he shaves and gets ready for his wife to come down). Teddy was on the Oncology Floor and people getting chemo used to walk in to his room to see him and he was in awe as he said, “they are more sick than I am and they come to see me”. That after Whipple Surgery! You are the same kind of person and that is what is getting you to where you are. Love you!August 30, 2009 at 6:55 pm #30971devoncatParticipant
I have a theory that doctors fight harder for people with good attitudes and a fighting spirit. It is almost like if the patient has given up, so have the doctors. I am not trying to be arrogant when I say my nurses love me. I think it is because I am always laughing and wear white and red polka dot pajamas when everyone else is in hospital garb, plus I was up and walking so soon after my second surgery which confirmed my reoccurance. My medical team fights for me as hard as I fight for myself, and I think that is because they see how much I love life. Attitude not only affects your outlook, but those around you so it is fantastic your sister is a feisty fighter.
KrisAugust 30, 2009 at 9:19 am #30970
My mother fought breast cancer & won; so did my sister-in-law’s mum; my neighbour is fighting bowel cancer & has a wonderful attitude – my lovely sister is a feisty fighter, too.
… one day at a time …August 29, 2009 at 5:53 pm #30969
Thank you, Gavin & Marion – yes she’s in Kings College Hospital, so I am reassured that they’ll do all they can for her. I’ll keep you posted & will keep being as optimistic as I can. Roll on tomorrow, when I go & take her out for her 24 hour pass!!August 29, 2009 at 5:08 pm #30968marionsModerator
Pauline, also from the UK had mentioned the following:
” If you need ERCP for biliary stenting then I would suggest the best hospital is King’s College in London. They also offer PDT and are the very best if your tumour is operable.”
MarionAugust 29, 2009 at 9:29 am #30967gavinModerator
I’m glad to hear that you are feeling a bit better and calmer this morning. It feels good knowing that you are not alone in this fight anymore doesn’t it. I know it’s tough to take all this new information in at first, but I believe that the more you know the better you will be at dealing with everything and also helping your sister and the rest of your family. Maybe thats not the case for everyone, but personally, I like to know as much as I can as it makes it easier talking with dads doctors and also talking with my mum and dad after docs apps etc. My dad forgets a lot of things so I need to be there to remind him of who said what etc regarding his treatment and care.
When you say your sister was transferred to Kings, I assume you mean Kings College London? This place –
If so, it seems like she is in pretty good hands there. Hopefully someone else will be along soon that was/knows someone who has been treated there.
I am keeping my fingers crossed for you that this is not inoperable and that surgery will be an option for your “big sister”. I hope you will both enjoy your 24 hours of tv, gossip and chatter! My dad spent the best part of 7 weeks in the hospital last year, 3 of which were spent in a room on his own after he had his PDT and he said he would have went crazy were it not for the tv he had in his room!
Best of luck to you all and I too hope you enjoy your weekend.
GavinAugust 29, 2009 at 8:21 am #30966
I woke up feeling so much calmer this morning, knowing I’m not alone any more. My mother, brother & sister-in-law are all being brilliant but we’re all so close to it & it’s all so new that I feel my distress must be overwhelming them at times, too, which isn’t fair when they have their own emotions to deal with, too.
She was in St. Thomas’ but they transferred her to Kings (both in London), which I’ve been told has the best unit in the Country but I will definitely do the research you recommend – in something as rare as this, all the info I can throw their way can only help. It’ll definitely help me anyway.
It had never crossed my mind but my sis & I made out Powers of Attorney in each other’s favour a couple of years ago (or was it last year? – my head can’t cope with concepts of “time” at the moment) – so thank you for that wonderful suggestion. Maybe it’s time for me to use it. I’m a lawyer, too, but I teach it these days & I’m finding it hard to get my head to think like a lawyer when my heart just feels like a “little sister” (albeit 56).
I had hopeful news last night. There’s a chance it might not be inoperable & they’ve suggested she has a 24 hour pass from the hospital so she’ll either be coming here or I’ll be going to her place for 24 hours of gossip & TV (there’s no TV signal in her hospital ward so I’ll have to remind her what a television is!!!)
I’ll go onto the Christie Foundation site & search for those postings. You’ve given me so much focus, which yesterday I’d have said wasn’t possible – thank you.
Good luck to you/us all for a lovely weekend. I’ll be back regularly.
JuliaAugust 28, 2009 at 7:59 pm #30965gavinModerator
Welcome to the site, although I am sorry that you have to be here. I know what you are going through right now as we have all been there. I know that like me, you will receive tons of support from everyone here and this site and the people here have helped me out a lot.
My dad was diagnosed last year with CC and we were also told it was inoperable. Radiation treatment was also ruled out from the start. I sure remember what that felt like. When we were told all of this, my mum and I were also called into the hospital and the 3 of us were told at the same time by one of the doctors on the specialists team. Once the initial shock wore off, our attitude was ok, that’s what we can’t do so what can we do. I agree with whats been said about hope, attitude and fighting spirit and believe that a positive attitude is a good attitude!
Where in the UK has your sister been diagnosed if you don’t mind me asking? My dad was diagnosed and treated at Ninewells in Dundee. His treatment was photodynamic therapy, PDT. If you want some more info on this then please just ask away or look for some of my posts on it. If I can help in any way I am more than happy to do so.
I know what you mean about the Data Protection Act and the docs not telling the family much. However, I understand that if you sister asks the docs anything then they are obliged to answer her. I know that my dads docs would answer my questions if my dad was there at the time. Also, when my dad was in hospital, his medical records were brought out everyday and were at the foot of his bed each day so they could be updated when required. It also meant that he and us had access to them each day. Is this not the case for your sister?
Here’s the link to the Christie Foundation Marion mentions in her post –
I hope you will keep coming back here and keep us all up to date with what is happening.
I wish you all the very best of luck.
GavinAugust 28, 2009 at 5:49 pm #30964marionsModerator
Lalupes…..These are the contacts I would make. All are very familiar with this cancer. Also, please peruse Gavin’s and Pauline’s postings regarding physicians. From what I have learned is that in the UK, several physicians are treating CC patients however, a large center has not been established. The largest Cholangiocarcinoma clinical trial ever conducted (although, it was multinational) , has been lead by the UK. Dr. Valle is one of the lead investigators of this study. Similar to the US, and other countries I believe it to be most important to be treated by physicians encountering a high volume of this cancer. Lalupes….patients easily can be overwhelmed with the information given and I wonder, as Kris has mentioned, whether there is a legal documents allowing you to have access to your sister’s medical records. This would give you the opportunity to advocate for your sister in the most constructive way by gathering different opinions regarding the diagnoses and treatment protocols available. And, as you have already experienced, the members of this site are incredible people and will support you all the way.
The best of luck and many good wishes coming your way.
J Peter A Lodge MD FRCS
Professor of Surgery
Clinical Director of Surgery
HPB and Transplant Unit
St James’s University Hospital
Leeds LS9 7TF
Tel +44 (0) 113 2064890
Fax +44 (0) 113 2448182
Prof. Brian Davidson
University Department of Surgery,
The Royal Free Hospital, Pond Street, London, NW3 2QG
E mail: b.davidson[at]medsch.ucl.ac.uk
The Christie NHS Foundation Trust
Manchester M20 4BX
Telephone: 0161 446 8099
0161 446 3000 bleep 12722
Fax: 0161 446 3562August 28, 2009 at 3:54 pm #30963darlaParticipant
I agree with Lainy. Your fighting attitude and hope will get you through this. Along with all of us.August 28, 2009 at 3:44 pm #30962
There you go girl! Fighting words we love to hear. In and among our various posts you will also see a great sense of humor. I like to hear that you have HOPE as HOPE and ATTITUDE with a touch of humor is what will get you through this.
It will also rub off on your sister which is the best RX.August 28, 2009 at 3:27 pm #30961
Thank you all so, so much. I’ve gone through every emotion just reading your messages but the prevailing one I’m left with is “hope”. I, too, did the google search on cc & came up with lots of really depressing stuff – but you didn’t come up on the search. I suspect (although I can’t remember) I was limiting my searches to the UK, which isn’t a good idea on something like this.
I found you through a flyer in the cancer outpatients department of the hospital when my sister & I were going for a walk around the corridors. There was only one flyer there. Now I’ve found you, I’ll take it back so someone else can see it & find you, too. I’ve also sent your URL to my mother & brother so they can find out more too.
Kris, I LOVE your “signature”. I will remember that it’s only a word, not a sentence. In my current state of shock, I’ve been treating it as all-powerful & all-consuming. Now I feel I d*mn well won’t let it win.August 28, 2009 at 1:44 pm #30960
Dear Lalupes, welcome to the best little club in the world that no one wishes to join. You have already been welcomed by some of our “family” and I can only say Ditto for me. It is perfectly normal to be frightened out of your wits but soon that will turn to fight. My only suggestion would be a 3rd opinion and hopefully you can get 2 that match. You have come to the right place though, for support and caring. We are the most awesome people in the world!August 28, 2009 at 12:01 pm #30959louiseParticipant
Kris has given you a starting point of the facts that can be foundational to hope. All of us on this site waver at times between hope and fear, but hope usually beats the fear. Where doctors have been concerned, I have been fortunate and blessed, but the foundation for my hope has been my faith. If you don’t have a pastor or minister, you might want to look for one. Once you get past the initial fear (which might return for visiting rights), learn all you can and you may become part of the specialist team working on your sister’s behalf. Even if the doctors won’t talk to you initially, they won’t exclude you from visits with your sister if she clearly wants you there. To me (and I believe to many others as well), the unknown is always more scary that the known. When we don’t know, we always imagine so many terrors. But with education, we can learn to cope and even combat some of the fears. As we fight, we build our own hope, too. Please visit this site as often as you need. We might even feel like part of the family. Yes, when I was diagnosed, I went on the web and looked for everything I could find about this disease. For some unknown reason, I did not find this site. All the other things I found on the internet were depressing, and I gave up on the search through the internet. But since I found this site (with help from my oncologist), the web has seemed a much friendlier and educational support system. Everyone here is free to vent, share ups and downs, faith and hope, whatever questions you want, no subject is taboo.
I need to be on my way to school. Not a good idea for the teacher to be late on the first day!
Peace be with you!
LouiseAugust 28, 2009 at 11:56 am #30958darlaParticipant
I also want to welcome you to our group. Kris has done a great job of it and given you a lot of helpful insight. We truely are like a second family and everyone here has been touched by this horrid disease and know better than anyone else what it is like.
As Kris said, the only thing we know for sure is that we really know nothing for sure about this disease as it is so unpredictale & treats everyone differently. Try to be cautiously optimistic. There is always hope.
I am sure you will soon be hearing from some of our UK members.
Take care and keep in touch.
- You must be logged in to reply to this topic.