Newbie from UK
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Dear Julygirl,
I am also very sorry to hear about your diagnosis but delighted that it is resectable. This is the most important thing. I think the waiting is terrible and it does seem as though they are keeping you waiting a bit but it is best that you are very fit for the op.
You are bound to get nervous and to be down at times but please try to focus on the positive – you have the chance of getting rid of this awful disease, which is wonderful. They seem to have found it early and you seem to be in very good hands. I am based in London and know that St James has a good reputation for liver surgery. Again, this is fortunate – not all UK cc patients get a good deal!
Of course you will have bad days. This is all very frightening and shocking for you. I hope you have a lot of support around you but do try to pull yourself back up and focus on getting through this op and giving cc a good knock on the head.
Thinking of you,
Take care
PaulineJulygirl
I’m so glad to hear that everything is good to go ahead with the surgery…that’s very good news!
What you wrote is so true. Life will never be the same again. I’m approaching the first year mark of my diagnosis in April of last year. And it seems to me to be a gradual process of learning to live with this, the possibility of recurrence and that one might die of this. The initial fear, or should I say utter terror at first, and the realization that life will never ever be the same again. It is so overwheling and there are not words to really describe that. I know that, at first, I could only take in a moment at a time. I couldn’t even read very much on this site because I saw that people died so often of something that I had! I can only say that I have gone on to live my life as if I am cured, because I found it to be the only way I can do this. I have questioned whether that’s the best way to deal with not knowing what lies ahead, but I’ve found it to be best for me. Over the year, I’ve come to an acceptance that I have done, and am doing, all I can. And that’s all I can do. Of course, every scan brings up that fear again. And wouldn’t it be so wonderful if there was some marker or some event, that one could say “that’s it…I’m now cured…that part of my life is over”. I can only say that it somehow becomes a part of your life and you somehow learn to live with that. It does force you into rethinking your life and realizing what’s important, and what’s not. I no longer think about it all the time and neither am I afraid all of the time. Somehow it becomes integrated into your life…it is not your life. I hope that makes sense! What I most wanted to say is that I understand what your saying. We all understand…I think we have all felt the same way.
Please let us know how you’re doing. Again, I’m so glad to hear that the surgery is on track. That is very good news!
Sending all my best to you Julygirl!
Jean
Julygirl,
Yes the waiting is the worst. We are all relieved that surgery is a go ahead. There are several threads on what to expect and helpful tips for surgery and after. I strongly suggest you read them.And, you are entitled to cry, have a breakdown or whatever. This is scary stuff. I was put on anti depressents and they were wonderful. I cant say that enough. I had to be taken off them for my liver, but I am coping fine now. My doctor also immediately hooked me up with a psychologist and that has been a great help. If there was any time in our and our caregivers lives that justified needing emotional and psychological help, it is now and there is nothing wrong with admitting it. I think perhaps growing up in the states, mental health is really not talked about the way it is here in Europe.
Anyway, best of luck on the surgery. I have my fingers crossed for a very successful surgery.
Kris
Dear Julygirl, you have every right to feel low. You’ll find that days will be like a ride on a roller coaster, but when you are feeling like that, remember you are going to have the surgery. That’s the best chance for cure and many many good years left or a lifetime left. The only news better right now is that you don’t have cancer at all. So keep yourself strong with a healthy diet, get out there and buy a new robe and slippers and some good books and remember, we are all praying for you, and you can say whatever you want or feel on this site, and you will find empathy, compassion, laughter, and understanding and so many wonderful people to support you.
All the very best,
SophieWell, I had my CPX test on Monday. Anaerobic Threshold 11.3. Normal Gas Exchange Data. No Ischaemia. So that means I am fit enough for the trauma of recovery after surgery. What a relief. I was so sure that I would fail the test. But it was a doddle. Easiest bicycle ride I’ve ever had
. Have a pre-op talk with the Leeds Consultant, Dr Prazad, on 20th April. Then after that, just sit tight and wait for a date for the surgery. It is the waiting that is the worst thing. Just want to get it over and done with. I worry that every day of waiting is one more day for the cancer to grow and spread. *(actually, it is just as well I am waiting, because I have a virus at the moment, a sore throat and tickly cough, so best to get the bugs out of the way first). every day of waiting seems interminable. Never known such stress before. Guess from now on my life is going to be full of stress. Operation, recovery, scans, tests, more tests. for the rest of my life (however long that may be), the big C will always be there, lurking in the background, never gone, ready to rear it’s ugly head. Cancer sure changes people. I am a different person to the one I was two months ago. On tenterhooks. Oh I wish the clock could be turned back. Sorry for the gloom, but I am feeling low today. First day that I have really cried. Think the enormity of this thing has finally hit me. Does every one suffer this? weeks of denial, and then, wham, all of a sudden, reality, and fear, and tears. Take care all of you for now. Will try to cheer up for my next post. Ciao. xxJulygirl,
It’s great news that you’re scheduled for surgery! As you know, that’s the surest way of beating this thing. Much luck to you!!!
-JoyceJuly Girl,
That is wonderful news. It is always good to hear positive things on this site. Good luck to you. We do all share this common bond of having to deal with this monsterous type of cancer in one way or another. I am so glad that you found this site, as much as I hate the reason that you have to be here. I will look forward to your updates, hopefully all positive.
Darla
Great news July girl. Who every thought we would cheer when we hear someone can have surgery? YAY! We are so glad you are having surgery! And yes, cross each bridge as you come to it. Great news.
Thank you for the good news. I hope that you have a successful resection and enjoy many cancer free years!
Hello all my wonderful new friends. I went to see my Consultant today, expecting the very worst, so that at least I couldn’t get any lower. The results of all my accumulated tests are better than I dared to hope. The MRI and EUS showed that the cancer is apparently confined to the ampullary area and doesn’t appear to have spread. Also, the enlarged Adrenal Gland is benign. So, Leeds St James Hospital are going to operate on me provided I pass the CPX Test. Hope to have the operation by the end of the month.
There is still the worry over what may be found when I am opened up, but will cross that hurdle when I get there. I am just so grateful to be given this chance. Know I will never be cured, but if my life can be prolonged, that is something.
All you lovely people have been through similar experiences, and all of your stories are slightly different. I think we all share a common bond because of this dreadful disease, and I am so glad to have found this forum.
By the Way, Marion, Ron and Devoncat. The surgeon who will undertake the op is Dr. Krishna Menon (scuse spelling). I googled him and found he has years of experience. Professor Lodge apparently deals more in Liver Transplantation these days, so my cancer support nurse informs me.
Take care. Will be back soon with more updates. Be brave everyone, and take care.
julygirl: You might also want to ask any physician as to how many bile duct cases he/she has treated. You will want to go with the doctor who has seen the most cases of this specific cancer. Prof. Lodge will fall into this category, also.
J Peter A Lodge MD FRCS
Professor of Surgery
Clinical Director of Surgery
HPB and Transplant Unit
St James’s University Hospital
Leeds LS9 7TFTel +44 (0) 113 2064890
Fax +44 (0) 113 2448182Sorry Ron, just opened the link you posted and it answered my question. He is based in Jimmy’s. So fingers crossed, if I can have surgery, I am hoping he is the man.
Hi all. Thank you for your kind words of support. I have just been reading through them all.
Ron and Devoncat. I will bear Prof Lodge’s name in mind. Is he at St. James Hospital? I was there last week at the Bexley Wing for my endoscopic ultrasound scan.
I believe that if surgery is an option for me, then the operation will be performed at St. James. It is quite possible then that he might do the operation.
My consultant in York is Alistair Turnbull, a lovely man with a very kind bedside manner.
I await Wednesdays outpatients appointment with a great deal of trepidation, and these next few days will be dreadful, I know. having difficulty sleeping because this terrible disease is constantly on my mind. It is lovely to be able to know that we can all on this board share experiences. LIke the old saying, a problem shared is a problem halved.
God Bless all of you. Till Wednesday, bye for now.
Hi Julygirl
As you can see, the people on this site are very friendly and helpful; it’s just a pity that you have to join us in this way.
This thread was started by Marion some time ago and will give you contact details that may be useful to you:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=2379
Since you are based in York then Prof Lodge, at Leeds, would seem to be an obvious choice. He is a very highly regarded surgeon and your own consultant should be able to refer you to him for his opinion.
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