My lovely sister

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.

Kris

Hi Julia,

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 –

http://www.kch.nhs.uk/services/liver/hepatopancreatobiliary-surgery/

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.

Gavin

Hi Lalupes,

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 –

http://www.christie.nhs.uk/home.aspx

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.

Gavin

I agree with Lainy. Your fighting attitude and hope will get you through this. Along with all of us.

Lalupes,
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!
Louise