Its a no
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Andie: I can equate what you are going through right now. For Tom my husband, when the local doctors were unable to get an internal stent into his liver so he could get rid of the drain bag, we made a trip to Mayo Clinic in Rochester, in the hopes that they would be able to internalize the stent. After two attempts, failed both times, although we were disappointed, our thought was “At least we tried!”
As I told Tom’s son tonight, “We have consulted with the best (Mayo Clinic) and although even though they failed to get the stent in, I’m glad that we went there, because otherwise, for the rest of my life, I would have been wondering if I did enough and would have wondered ‘what if’. But now I know in my heart and mind that we did all that we could do”
So don’t beat yourself up on this. And remember that no one has an expiration date stamped on their butt! Only God knows for certain when that time will come. Case in point, Tom’s oncologist told him in December ’09 that he would give him 6 months at the most! And here we are 12 months later, still fighting, so he has lived a full 6 months PAST what that oncologist predicted. Has it been a rough road? Yes. Do we reget these additional 6 months? No.
So take it one day at a time, spend lots of time with your father. Take lots of pictures. Let him know that you love him. Make the most of his good days, as he will have good days. On the days that he is not having a good day, just be there for him. Hold his hand, read to him, watch a movie with him. Sit by his side, and most important, tell him that you love him!
Go with God, and KEEP KICKIN’ THAT cancer!
Margaret
Dearest Andrea, I’m so sorry Professor Lodge can’t help, but how wonderful that you were able to find & ask him & that he was so willing to meet you all. I can’t see that there was anything you could have done that you didn’t do. Your dad is so lucky to have you – & it sounds like you’re equally lucky to have such a wonderful dad.
my thoughts are very much with you & your family during this very difficult transitional period.
Love Julia x
Hya Andie I am so sorry about your visit to Leeds, I have been reading about your journey. I am sure that you will enjoy this time of the year with all of your family. Make this birthday time special for your mom, she will enjoy all that you can do for them both and this will carry her on in the future. Be Happy love and light Alan’s mom
Andie,
I’m so sorry that nothing came of your visit, but Helen is so right, you really did everything you could have and I know your whole family must be so proud of you. I can’t add anything to what Helen has said.
Hoping that you can make some more nice memories and enjoy christmas. You are so brave and positive.
KateDear Andrea
I don’t get on this site as often as I would like, so have only just seen the follow up from your visit to Professor Lodge.
I am so sorry that he wasn’t able to offer anything positive in the way of treatment, but you have done absolutely everything you could over the last while to try to help your father …
When Alan decided to stop his treatment he was able to accept the fact of what that meant far quicker than I did. But actually, within a fairly short space of time, we found we reached a sort of calm place after all the struggle to find treatments, the repeated hospital visits, the side effects of treatments and so on. For the three months that were left to us, because we had accepted that time was now limited, we were able to talk very openly about things and, like Lainy and her beloved Teddy (all Lainy’s words seem come straight from her heart!), we became closer than ever and I have been left with such treasured memories of that very special time.
Alan was not cured of cholangiocarcinoma, but he reached a place where he was definitely healed – and I hope with all my heart that your father reaches that calm place too.
Things will settle a little as the days go by and, yes, it will seem strange at first not to be searching around for the best things to do, but making the most of every day will be the priority now.
Andrea, if I can be of any help to you, please don’t hesitate to contact me – and you might like to have a look at the Penny Brohn site (see helpful links on AMMF’s website) – they have so much to offer in the way of wonderful holistic advice, and they do have a helpline …
With love and positive thoughts
Helen xx
Thinking about your guys. Im so sorry you didnt get the news you hoped for
I’m glad that you and your family are being positive and looking forward to the good stuff in stead of the bad. It’s very inspirational.Kim
Dear Margaret and Michelle,
Thank you for your kind words. We had a day of tears yesterday, think we all needed to let it out of our system. It had been a long few days. You are right we need to take it day by day. Dad seems to have accepted it now but I’m feeling lost as my time has been taken up emailing and organising various second opinions. It now seems so final.
Dad is in good spirits today, enjoyed his tomatoes on toast and icecream whilst I was there, and was very chatty. I think we have all realised time is precious and there is no point wasting time being sad. It is his birthday next week, and we also have Christmas to hopefully look forward to together.
Thinking of you all and once again thank you for your kindness
Andrea x
Andie
I am thinking of you and your dad and your family. Take it day by day, and don’t focus on what is to come but focus on the present!
Lots of love and prayer
Michelle
Hi Andie,
The Mac nurses really will do so much more for your dad than just deal with his pain, plus they will do a lot for you and your mum, And the amount of clout that they have when it comes to getting things done in a hurry is outstanding. My dads nurse did a ton of stuff for us all that would have taken us so much longer to sort out. And she was always there at the end of the phone, and if dad felt he needed her for something then she came running!
Hugs,
Gavin
Thank you all,
Marion,
Thank you for your kind words. Reading so many posts I do think perhaps this cancer was always going to get the better of Dad, whatever way we went. I can take some relief in that he didn’t have to go through a major operation for us to have been told it had not worked. Dad has battled colon cancer most his life and had enough major operations to last him a life time. He enjoyed the visit to Leeds, and managed the journey really well. So well in fact that he as said he would like to start going out and about as it made him feel better. He has also agreed to have the Macmillan Nurses in, so not all bad came out of the visit.Lainy,
I will tell my Dad to look out for the Italian Restaurant and the seat with his name on, it is a comfort to think he will no longer be suffering emotionally but will be in a better place with old friends and new.Gavin,
Dads DN will organise the Macmillan Nurses on Monday when they next visit. To be fair they have asked him every week if he wants to be referred but he has said no, mainly as he sees it has being final. Professor Lodge told him we need support and they are not just for pain relief. As Dad isn’t in any pain he didn’t think they would come, I had told him that they didn’t only come for pain relief, but hearing it from Professor Lodge changed his mind.Jemima,
I couldn’t praise Professor Lodge and his team any higher, they are amazing and really put our local NHS hospitals to shame. Professor lodge went out of his way in all aspects. Can you believe Dad had a consultation, CTscan and results in the same day. If you want the details to get in touch just email me. The hospital has accomodation for you to stay in if you have to travel. Dads room was free as he was a patient, so we only had to pay for mine which wasAndie,
I am so sorry to hear this news. And I so agree with what everyone else has said to you about not looking back and beating yourself up. You have done everything that you possibly could for your dad and I know that he will be so very proud of you.
I am glad though that he is now taking the help of the Macmillan nurses and they will be a great help, not just for your dad but for all of you. We all had close contact with my dads nurse and I have nothing but great things to say about what they did for us all. Did Prof Lodge refer your dad today for Macmillan nursing or did he tell you how to go about getting one? Thinking of you and your dad right now.
Hugs,
Gavin
Dearest Andie, I am so very sorry about this news. Please never look back, you did all that you could do, no one can look for more or ask for more. I am making a deal with you and Jen. If Teddy makes it first to that big Italian Restaurant I will have him saving a seat for your Dad and Jen’s Dad. In all honesty I want Peace for Teddy, the sooner the better. Stay strong girls, the show is not over yet. Enjoy every second you can of love and Memories. I don’t think T & I have ever been as close as we have these last couple of months. It has been incredible.
Andie…I am sorry to hear the news. Professor Lodge is very familiar with this cancer and his opinion is one I would search out also. Andie, please, do not feel guilty for not having seen Professor Lodge at an earlier time. The chances are that had you consulted with him a long time ago, the results may not have been any different, as the true extent of progression of this disease only can be determined during surgery. Early detection is what we need in order to have a best chance for a curative, surgical resection.
I am wishing for your Dad to experience Christmas with his family, as there is much hope for this to come true. The McMillan nurse will allow for comfort and excellent care and support; just what is needed at this time.
Hugs and best wishes,
MarionAndie
I am so sorry that you did not get more positive news from Professor Lodge. I have been thinking of you all day. Although the outcome is not what you wanted at least you know that you have looked into all the possibilities and done the best for your Dad. I know that I want to do the same for my mum.
Having the Macmillan nurses in will be a help to both your parents I am sure, and a small peace of mind for you too.
I am thinking of you and sending hugs to you and your family
Jemima
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