March 4, 2009 at 2:41 am #26731magicParticipant
Tom I would like to send a few sympathy vibes your way also.My husband had a few lumps on the head too,a bit anoying and aparrently not that common but they actually shrank back in size and never caused much problem.
kind regards JanetMarch 3, 2009 at 9:59 pm #26730
Tom…I am so happy to hear that you are feeling better today. Can’t wait to hear what the orthopedist has to say and am hoping for good news coming your way.
I am glad that you have made the decision for other specialists to peruse your records.
Please, stay in touch.
Hugs coming your way,
MarionMarch 3, 2009 at 9:30 pm #26729sambamanMember
Today has been much better, I struggled again to get out of bed due to my hip, I think I must have hurt it in some way during the night. But there has been a lot of improvement today and I can now move around a lot easier. I chased the orthopedist again today and am expecting to hear from them tomorrow.
I do have copies of my most recent scans and records which I am going to forward to other specialists to garner their opinions.March 2, 2009 at 11:08 pm #26728
Tom…..do you receive copies of your records including, copies of the scans? I don’t know how it works in the UK however, in the US is is possible to forward all to a specialist to evaluate. In many instances a personal visit is not necessary.
You must know that tons of love, support, and wishing for hope is coming your way.
MarionMarch 2, 2009 at 2:02 pm #26727darlaParticipant
I agree with Lainy, your attitude is great & you seem to be handling things well under difficult circumstances. Having family & friends to support you is a big plus and your great attitude & your age are on your side. Just keep on living for today & keep experiencing everything that you can.
Love & Hugs,
DarlaMarch 2, 2009 at 1:50 pm #26726lainyParticipant
Good Morning Tom, or afternoon across them miles. It sounds like you have “it” under control and it’s wonderful that you have family and friends to help. I always say I like to be realistically optimistic. Your attitude can help get you through everything. We love hearing from you so let us know about that darn hip. You go on experiencing you are too young not to take it all in!March 2, 2009 at 10:29 am #26725sambamanMember
Thanks for your messages of love and support. I have of course told my family, I am back living at home now since my surgery so they have been with me every step of the way. Obviously they are finding it difficult to deal with this as am I but we are attempting to be strong together. There have been tears over the weekend, and I am thinking how to tell the rest of my family and specific friends.
I do think the hip area is of concern right now, I am waiting to hear early this week about a course of action as I do get some pain from it at the min. It has only come on since I was told about it so I am unsure whether the pain is from me overcompensating and trying to protect the area too much.
My father is my great help at the minute speaking to the other doctors from me, and he will get in touch with the other docs, does anyone have any specific recommendations for me? I do not have any specific names of other oncologists, but am willing to contact anyone who can offer another opinion.
I keep trying to stay positive and tell myself I am young so I can fight this, but am still coming to terms with it. I just can’t believe it is happening to me, I have too many things to experience in life.
TomFebruary 28, 2009 at 5:17 pm #26724jeffgMember
Tom, Sorry to hear your prognosis. Quite sobbering to say the least. Checking out the team at the Royal Marsden sounds like a plan. It will at least clarify if something else can possible be done. Even being on hospice I sometimes say to myself , only 6 months? I’ve always remained optimistic and pressed on with life dispite how many times I’ve been told the end is near. I’m just a hopeful, and have faith that miracles do happen. And after 10 years of battling, I have had plenty of time to come to peace with what ever God has planned for me. I pray for the best for you and hope Royal Marsden can offer you something.
Jeff G.February 28, 2009 at 4:59 pm #26723kristinParticipant
A doctor can tell you what USUALLY happens in a particular stage of a disease, but he or she can never tell you for certain what will happen to YOU. Please try to keep this in mind, and I agree with all the others that you need to keep seeking opinions from other experts, and you need someone to carry some of the burden of seeking information.
Wishing you all the best!
KristinFebruary 28, 2009 at 4:54 pm #26722rose-mayMember
I haven’t cried much yet but hope for a good long cathartic cry at some point. right now my abdomen is so tender from having a stent placed and an inflamed pancreas reaction that it hurts too much to cry even if I could. It hurts to laugh too which is worse. I’m sure the tears will come when you feel saffe enough and ready to discharge some of that pain.February 28, 2009 at 4:49 pm #26721lainyParticipant
What Marion says is very true and important, Tom, about having someone lift some of your burden. I make all the appointments, gather all the information, do the research. When Teddy goes to a doctor I take notes and ask questions.
One might say you need a medical secretary and advocate?February 28, 2009 at 4:43 pm #26720
Tom…do you need any help with reaching out for other medical opinions? If so, please let me know. I wonder whether the hip area is of major concern right now. On this board, we have seen others with bone mestaseses our JeffG for example, speaks about it frequently. I am still puzzled by the spots on your head as this has never been mentioned on this board, by anyone.
Given the diagnoses by your current physician, it is an absolute must for you be be consulting with one, two, or more doctors familiar with the progression of this disease.
This is something I did for my husband as being ill and having to absorb this kind of information is just too much for anyone to handle. Therefore, I made all necessary connections on his behalf. Is somone there for you to take away some of the work it entails to make these other contacts?
Please, stay in touch
Hugs coming your way,
MarionFebruary 28, 2009 at 4:37 pm #26719lisaParticipant
It’s JUST NOT FAIR!February 28, 2009 at 4:36 pm #26718tessMember
Hello Tom, just a note to say that I’m thinking about you. You know you’re always safe to come back here & share what’s going on, as the emotions of it all can change from day to day, as you’ve said. You’re not alone & I”m sending millions of good wishes to you, for your fight. Keep us posted Tom, you’re in our thoughts.
TessFebruary 28, 2009 at 3:43 pm #26717devoncatParticipant
I understand how you feel. I had the same reaction. Tears before, strength after knowledge. I too feel in shock. I am sorry that you are having to face this. I dont know how long the doctors think I have. I havent asked and I dont want to know. I would turn into a raving banshee if I was told so I am very impressed with your strength.
Perhaps you could check out a couple of these medical trials going on in the EU. I was looking into this one in Denmark http://clinicaltrials.gov/ct2/show/NCT00779454?term=cholangiocarcinoma+and+denmark&rank=3 that includes all the standard chemos, plus a “biological treatment”.
Here is one in Britain that is using stenting and Photodynamic Therapy
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