Forum Replies Created
Much love to you and your Dad Jules.
I’m glad you both enjoyed a good holiday.
I was very sorry to read about your Mum. I wish you and your family well.
I was also sad to read on about other people who have expereinced recent deaths because of this cancer. I send my love to you all.
Kathy, I have no experience of any of this, and no advice to offer, but I send you my love and support all the same! Good luck to you, much love! x
Figen, I too wish you and your Mother, and your family, all the best. Enjoy your Mum while you can, and as UK Memeber says, make each day as good as possible.All the best to you, I think of you often and wish you all well. xx
I was so sad to read your post. I have no advice to give you, sorry, just to echo what Peter said…if you can get to another country maybe you could get another opinion.
My heart goes out to you and your Mother. This is a hard one for any of us to deal with, but at least most of us have helpful medical people to help and advise. So sorry that is not happening with you.
Take care, best of luck to you both! x
Excellent news Marion! So happy for you and your husband, and will look forward to hearing more, as my Mum has also just had surgery!! Take care the pair of you!! x
Thanks for your reply, very glad to hear your husband is doing fine, so nice to hear a nice story!! Are you in UK?
Anyway, checked out the margins thing, and he said yes, good margins, CLEAR margins were his words.
Wish they did diagrams and stuff here…….like getting blood out of a stone it is!! No, Dr.Moroulis, the other surgeon who worked on Mum, has been an absolute darling, inspite of our language difficulties!!
Forgot to ask about the stent today…….sigh….more blunt talk about what the future holds etc etc. I am really tired! Should get the path lab reports Monday………waiting……….and Dr.M is going to try to ensure a meeting with the oncologist before I go. I am supposed to return next thursday to UK. Sigh. Having a stubborn 67 year old Mother that lives in a tatty old caravan on a greek island is GREAT……….till she gets cancer!
Thanks friends! x
Thanks for your reply Jules!
I have to say Mum is not in ANY pain or discomfort. She had an epidural for surgery, but only had pain for 2 days after the op. She is completely mobile, just too thin, and a liitle weak, but is working on this daily, taking walks, climbing stairs, and no problems. Also she has her appetite, but just finds it hard to eat TOO much, she is never a heavy eater, and maybe without food for ten days or so, she needs to build up her capacity again!
OK, I will ask about the margin thing, and why they kept the stent in. All I know is that the Docs were very happy about what they did. I’ll see if I can get some more precise info though!!
Re chemo, I have also read that the possibility that in can help is unproven. She says that she will just do what the Docs tell her….DANG i wish I was going to be around to talk all this through with the oncologist. I still have another 6 days, so fingers crossed.
Thanks Jules. What causes the hernia then? Strain? I have told her she must take it easy for MONTHS! She knows it!
I will check out the immunotherapy stuff you mentioned. Also, there was an exciting post about something called DAVANT. I need to read that again. I wonder if it would be relevant for my Mum.
Thanks Jules, love to you and your Dad!
OK, Euston, we have a problem!
The Docs say Mum will have to stay in for probably another 10 to 15 days. Breathe in, and breathe out………….I have written so much to so many people…so forgive me, I will copy and paste from a personal email to my Brother…
There is some problem….DON’T WORRY! Doesn’t SEEM major, she hasn’t been rushed into ICU, she is still eating, still mobile and still getting stronger by the day! BUT……….she’s going to be in for another 10-15 days it seems. Found out today that it WAS a seriously major op. Dr.Moroulis got graphic, on my insistence! Oh yes, we had the medical surgery books out………Mum has had part of her bile duct removed, and part of her liver, and her gall bladder. This has rather freaked me out, to say the least……….fancy, I had NO idea. Now, trying to remember what he said about this new problem………something about……….hells bells Chris. You are the first person I have really shared this with. Found out about 4 hours ago. Had to break the news to Mum, that she is going to be staying here longer than expected.She took it on the nose, as she does. Within 15 mins, after a few “BIGGER BAGGER BUGGER’s” from her, she was already inventing reasons why it was a good thing, and what she could do with her time. She is awesome. I would be crying and whingeing if I were her!! I did after a few days in hospital when Tara was born, when I was told we wouldn’t be escaping as soon as I had expected!! But she really MIGHT be being brave now, again! I don’t think the dying bit bothers her as much as all this arseache in the meantime!
Anyway…………she says it’s the hospital food that does her head in most! So, I marched down to the general Docs office to consult them!! I have a fairly good rapport with most of them now, which helps. Anyway, in short, I am allowed to bring her certain foods to supplement her diet. Obviously, not being able to cook is limitting, but a variety of fresh fruit is good. We are each going to brainstorm this overnight, and see what goodies we can come up with! I had cherries with me the other day, and asked if she could have some, but it was a no -no. But I now have permission to give her WHATEVER, as long as we avoid animal fat as much as possible, dairy particularly. Know any good dieticians? Protein is good too, they want her to have protein. So, thats how it is Chris!
The problem……………right, as I understand, there a 2 main biliary ducts that go into the liver.Off these 2 ducts inside the liver, are lots of little branches, bit like you imagine a lung. Where they have cut the bit of the liver away, one of those “branches” is leaking. Remember she had that stent thing put in when we were over last? Well, that is still in there, and they have opened it, to allow the bile to drain faster(?) to relieve the pressure on the branches. Something like that!
I feel very inadequate coming to this site, I seem to have so little to be able to share in proper medical terms, etc etc. But I am just a person writing here as these things happen, with the little knowledge I have to impart…………………..oh, sometimes I wish I was in UK dealing with this!! Would it be easier?!!
Any similar experiences? Any advice/comment?!!
AH! Presumably this is the hernia, I’ve just read your other post.
So what happens, does he just have to live with it?
Hey Jules, I’ve been thinking of you whilst in hospital with my Mum!!
Did this problem get sorted out OK?
Thanks for that info Jules! I will bear that in mind over the next few days, as hopefully we’ll get some more info on that kind of stuff.
I haven’t seen the surgeon since the op day, but Mum said that he said it was “a good clean job” or something similar, so hopefully that is what you mean!!
She came out of ICU today, and is back on the general ward. I have just nipped in here to update family and friends via email, and will now go to the hostel and collect some stuff, as I’m going to stay with her tonight. She’s really suffering, they won’t even allow her to drink water…she’s only allowed to suck on water soaked cotton wool right now….which isn’t much fun. And she is in alot of pain. Just before I left they gave her an injection for the pain, which started to work quite quickly. Then she went into a doze, so I slipped away to collect my stuff! Still covered in tubes etc etc. Well, what did we expect really??!!
Anyway Jules, I best go now. Thanks for your support!! Again, hope things are better for your Dad! x
Hi everyone, thanks for your replies!!
Well, had a nail biting day yesterday!! She was in surgery for nearly 9 hours!! Longest day of my life I reckon!! Well, after about 5 1/2 hours, the surgeons came out to tell me they had successfully removed the tumour!! They said it was really hard work, but they reckon they were successful!! They then said they had to go and do the 2nd op!! WHAT??!! Apparently they had reconstruction work to do!! So I had to wait another 3 hours, before they came out to tell me they were done!! They said her condition was stable, and she was being transferred to the ICU. I wasn’t allowed to see her yesterday. However, I went to the hospital this morning, and was allowed to see her for half an hour!! She is fine!! Hooked up to a myriad of machines, tubes and wires everywhere!! Bless her heart, she thought it was still operation day, ie:Tuesday!! She didn’t realize how long she’d been in there!! Anyway, it was a little hard for her to talk, her mouth was really dry, as she’s not allowed food or drink till tomorrow. But the nurses said she was doing just fine, and she seemed fine. WHAT A RELIEF………although I am aware that it may well not be plain sailing at this point…we’ll take each day as it comes. She should be back on her general ward again tomorrow.
As for follow up treatment, I guess I’ll find out about all that in the next few days? I assume they’ll have taken the tumour away to do tests etc on? So, I will just have to wait and see what they have to say.
Thanks for the info, at least I have an idea of what may happen!
Love to you all, and hope your Dad is OK Jules!
How nice to hear some good news!! I’m really plaesed for you and your husband!!
Oh Jules………..I have nothing to offer you, so sorry. I am just feeling for you. BEEEEG cyber hugs to you!!