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Thanks Jeff. Will look further into whether we are able to receive this. My uncle his first chemo treatment on Friday – He felt quite sick on day but wasn’t so bad the following day. Thanks for your reply x
Thanks Kris- We’ll look into the radiation therapy. As for sitting around – he’s doing plenty of that and the pain drugs seem to be kicking in a little so that is helping. Friends come to visit quite regularly which is great when he’s up to it.
Mary – thanks for sharing this. It truly is helpful. My uncle was diagnosed with CC in April and has had surgery which was just about successful. However, it has been 4 weeks and he is so very thin and gaunt in appearence. He was released 3 weeks after his surgery but after a week at home feeling very sick and unable to keep any food down, and also having temperature/shakes/shivering/ pains in his back and chest he was readmitted. They’ve discovered fluid on top of his liver which was pushing his lung up and leaving him with the above syptoms. They’re also doing tests to see if theres anything else wrong with him.
Your story has instilled hope within me, that my uncle too will in a year after his diagnosis be able to enjoy his sons first birthday; that he will get past this traumatic time that we’re all going through and build up enough stregnth to get a little bit of normality back into his life to be able to enjoy those prescious moments which we all take for granted. Take care and god bless xxJules – thanks for getting back to me. Day by day is just what we need to do, i saw him later today and he seemed much better than yesterday. Its so nice to hear that your did feel better after 8 weeks or so, it does help listening to different experiences, if anything its encouraging. I will definitely take your advice -the carbs build up is good tip – do you serve it with anything?
I want to stick with Dr Prasad and hopefully by my uncles next appt he will be feeling better. Its just the billirubin level thats scaring us at the moment.
Im glad to her that youve been take your dad a way to Cornawall and just create some happy memories amongst this rollercoster ride.
Thanks – your advice ss definitely helpful. x
Thanks for your messages. I’m not sure if it was more than a liver resection.
He’s still in hospital, his billirubin level was falling after the surgery but then rose again last week. They think it maybe because of an infection but the antibiotics don’t seem to be doing much however the level has fallen from 320 to 306. We were so happy when it had gone down to 215. Not sure what happened! We do know that his Consultant is really good and is trying his best for him. On the plus side my uncle sounds very well when I talk to him on the phone, and his itching has stopped which in itself is helping with his quality of like.Thanks you so much for your prayers. We have also had tremendous support from our community and I do feel that these prayers are hleping us all though. May God continue to help you both and your families also.
Geoff- your pst was very helpful (as has been everyones – so thanks to all!) I’m afriad I don’t know what my uncle’s billirium level is but will find out. But I do understand what you’re saying about being part of the 10%. It really does frighten me, and its awful to think that everything you attempt to do just might not be enough. My uncle seemed better during the day yesterday, but he is himself thinking that if he feels so week after the laparoscopy (i think thats the term for the exploratory surgery?)then how will he get through after the major surgery. By bedtime he was feeling very nausious.
We were wondering whether there would be an adverse impact if the major surgery was delayed by a week. On one hand the time may help to build him up but then on the other hand it may have an adverse effect becuase of the jaundice!
Thank you to you all for your messages – it makes all the difference as you can see that you’re not alone in this. I am really quite new to this and im certain I wont have all the terminology correct ert. My uncle is under a consultant called Dr Raj Prasad who is in Prof Peter Lodge’s team at Leeds. I have to say Dr Raj Prasad has been really good so far. Each time he’s met with us, he’s taken the time out to talk properly explaining in detail what our options are and then what e cae across during the exploratory surgery. It’s just that we are so caught up in emotions that some details just go over your head. He has explored the different medical ways of relieving my Uncle’s Jaundice but has been unsuccessful. When he was telling us this I could see that he felt gutted that he couldn’t tell us something different.
He did outline all the various ways of relieving the Jaundice in the medical route but all options were very quickly eliminated. I just feel really helpless, but I’m trying to remain positive. My uncles just so itchy though. My other uncle is elping mby giving him regular massages, which I think helps circulation but also calms his itching a little. I just know how I feel when I’m itchy, and its horrible to know that he is itchy 24-7.
There is a tumor on the liver, in the bile duct and lymph glands. Before this major operation we just wanted to explore alternative routes to at least see if we can help the jaundice. But I guess we’re just clutching to straws. Am i just wasting my time looking into medicinal / herbal treatments, as this obviously can’t move the obstuction in the bile duct? We’ll probably try anyway. Jeff, thanks for your ‘take the bull by the horns’ and ‘keep your pecker up’ – Will certainly try to.
I just wanted him to have a better chance during the major surgery, and hence was looking into alternative treatment. I will note the various suggestions and see what we can do (if anything!). Thanks to you all though – I really do value everyone’s support.
Mary – Happy to hear the success that your husband has had with his treatment. It gives me hope… My Uncle has too only just been diagnosed. I’m so afraid for him as he is sooo young and has 3 infant children. He has Jaundice and they are going to unblock the Bile Duct. we are trying to get him referred to Leeds for a second opinion as they are sayinf my uncle his GP has been of no help what so ever – we really felt the postcode lottery effect this morning when he said he couldn’t refer him outside of this area. we are willing to go private to get this initial consultation but it just feels as if the system is against us. i pray to God that he shows us which direction to go in. I would appreciate any advice about where we can get treatment for his cancer as we are willing to raise funds to try as extend his life – I, as his neice & friend just want my young cousins to be able to be old enough to remember him before he goes.
Please can you share with me what you were told about your husband’s chances when he was first told about CC? All advice is much appreciated…
Fathers Daughter wrote:I am sorry to hear about your Dad. You were with him through it all and I am sure he was grateful to have you by his side. He knew how much you loved him. I hope you can find some comfort in that.I am taking your advice to try to just be there for my Dad as well. Unfortunately, he said he feels like his health is all we talk about anymore and he says he is boring everyone. He has also made the decsion to forgo all treatment. I think it is because he feels like he is a burden or maybe he is just scared, I don’t know. He won’t talk about it to me anymore. He doesn’t want me to even take him to the doctor anymore.
I actually liked the idea of taking him to doctor daily because selfishly I could spend more time with him without looking like I was hovering over him. I don’t know if he needs to mentally sort things out so I am trying to just give him the same respect I gave him when he was healthy by respecting his decision but I know I will lose him sooner without treatment. It makes me panicked and helpless. I pray he will change his mind.
I know it wouldn’t be fair for God to let me keep my Dad forever when the rest of the world has to lose thiers but it doesn’t stop me from asking Him for more time. Especially after reading your Easter post, I know that I need to just be grateful that I have him now. It’s just so hard to feel grateful when the feeling of fear and sadness is so much stronger. I am so happy to be able to spend this Easter with him and yet I am so sad because all I can think about iis that this is probably the last Easter I will spend with him. Then I geel guilty for being so ungrateful for the time I do have. I guess I have some things to sort out myself.
Thanks for your advice.
My Uncle has too only just been diagnosed. I’m so afraid for him as he is sooo young and has 3 infant children. He has Jaundice and they are going to unblock the Bile Duct. we are trying to get him referred to Leeds for a second opinion as they are sayinf my uncle his GP has been of no help what so ever – we really felt the postcode lottery effect this morning when he said he couldn’t refer him outside of this area. we are willing to go private to get this initial consultation but it just feels as if the system is against us. i pray to God that he shows us which direction to go in. I would appreciate any advice about where we can get treatment for his cancer as we are willing to raise funds to try as extend his life – I as his neice & friend just want my young cousins to be able to be old enough to remember him before he goes. God bless & I hope you are able to get the help needed for your dad.
If anyone else comes across this pos any advice you have will be very much appreciated. I will also look up the Mayo Clinic and MD Andersons Website – if there are otehr specialist centres that deal with this condition please let us know. Also, if you know about the whole world of referrals or processes please get in touch. Thanks!
