Introduction My brother’s fight with Cholangiocarcinoma
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As for running down the road in any attire, I urge you to wear good shoes with lots of tread. You don’t want to compound things by falling. But, it would give the ambulance squad something to talk about when they got back to the station, so it wouldn’t be all bad.
Duke
Hi Donnie,
Great to hear from you as always! And stable for the tumour, we love hearing news like that and yes and Lainy says, that is good news indeed! Hopefully though the numbers will keep coimig down and then the dreaded itching will go away also. My dad hated the itching as well so you are not alone in that. Running down the road in the nude, well……that could be an option as it is certainly cold enough here for that!!! Ha!!
Glad to hear as well that the classes are doing you some good, they did a lot of good for my dad as well and he liked going there. And should you feel like having a moan then go right ahead and do so. That’s what we are all here for to help if we can. Keep in touch Donnie, you got a ton of people in your corner with you now!
My best wishes to you,
Gavin
Donnie, this IS good news. We love the word stable and remember CC takes a long time to appear so it will take time to get better. And attitude is everything. For the itching I always recommend Sarna which you don’t have there. I know one gal had her Uncle in the USA send it to them. It really works. The other thing is when you start itching try to take a cool shower or bath soak. One more thing is Teddy used to put ice packs where it itched the worst. The cold really helps. Now I am not suggesting you run nude down the streets when its cold but the above could help. Love hearing that the tubes are working good and look forward to more good news!
Hi Donnie here , how are u ?. It’s been a while , I know .Nothings changed really , the stents at both sides of my liver seem to be working , my bilirubin has come down to 137 but still have associated conditions with high bilirubin mainly annoying itching! . Attended the Glasgow Beatson Hospital on Wed but there is nothing they can do while my bilirubin is high , on positive side tumour hasn’t grown or spread . Through my GP have joined Marie Curie Hospice , been attending the last 3 weeks for physiotherapy , relaxation classes and talks with Drs , nurses and experts. maybe I shouldn’t moan but at least I have some quality of life at the moment , able to do things . I’ll keep in touch Donnie
Hi Donnie,
Great to hear from you! I’m okay thanks. Glad to hear that you are enjoying some quality of life at the moment and this is to be cherished isn’t it. I am sure that as the bili numbers keep on dropping then the itching will also cease as the jaundice clears up. This took some time as well for that to happen but it did happen and hopefully it will for you as welll.
Hope that you get some good news at the Beatson on Weds and please let us know how that goes and what they say. How do you like going to the Marie Curie hospice classes? My dad used to go to the Macmillan ones here in Dundee and he was sceptical at first. But he loved it and started going twice a week. He thought it would be full of patients all feeling really down about everything but it was the total opposite. Lots of laughs, jokes and they all enjoyed it loads. Hope that you will get a lot out of it too. The physio and relaxation classes should give you a lot. My dad loved them too and he used to get a reikki massage every time he went. Do they do reikki there? If so you should give it a try!
Great to hear from you Donnie and looking forward to hearing from you again soon.
My best wishes to you,
Gavin
Hi Gavin , How are u doing , sorry I’ve been a little quiet lately . At the moment I have some quality of life , bilirubin is coming down slowly 146 but still have the associated conditions,the worst being the extreme itching .on Wednesday I’m going to the G lasgow Beatson hospital for my 2 months update , probably nothing’s changed and I’ll be told to come back in 2months. , just as well telling me through the phone ! And save the travelling ! Dr Murdoch has referred me to the Glasgow Marie Curie. hospice where I have attended 3 times.i have joined the physiotherapy.class , the relaxation classes and the general talk classes . I’ll. be in touch to tell u how things have got on. donnie
Fingers crossed here as well Lorraine! Please keep us updated on how everything goes.
My best to you and Donnie
Gavin
Lorraine….thanks for sharing the good news. A tidal wave of good wishes are heading your way.
Hugs,
MarionHi,
Yes. So thankful for the good news we received today. Fingers crossed this means that the stent is now working.
Lorraine xx
Hi Donnie,
That is brilliant news, you just made my night! Pure dead brilliant in fact as you say on your side of Scotland!! Hopefully that is the stent working now as it should and that these numbers will continue to fall. The yellowing will take time to clear up and hopefully it will as the numbers continue to fall. Is the referral to Edinburgh still on the cards?
Yep for sure stay positive and enjoy this news! Tin of Irn Bru to celebrate tonight!
My best to you,
Gavin
Donnie, a big YEAH goes out to you! Just be aware that the Jaundice is receding but the yellow is like a dye to the skin and takes a little longer to leave. When my husband jaundiced I told him, “You know I don’t like you in yellow!”. Humor, always humor it helps a whole lot. Also he used to say on a positive note….”Now we know what’s wrong, lets fix it!”.
Hi Donnie here , Just had unexpected good. news my bilirubin has come down to 152 , a fall of 62 points so looks as if the stents are working . Dr Murdoch was pleasantly surprised too as he felt I looked more yellow than normal . Let’s live in the positive and enjoy the good news ! Hopefully it’ll continue into the following weeks. Donnie
Lorraine, I am so sorry for what you and Donnie have to put up with while fighting this CC. It is sad as most Doctors realize this is a rare monster of a cancer and are willing to work with other who may have more experience. I can only wish and hope for SOMEONE to see Donnie so that you know you walked every avenue. Ego’s BE GONE!
Hi Gavin,
My brother’s GP is tring to organise an actual appointment with Professor Parks in Edinburgh. He understands why we want a second opinion but is worried that we are going to get our hopes up only for them to be dashed. He has been in touch with the consultant in Glasgow and he feels that they are doing everything they can in Glasgow. He explained to us that the problem is the position of the tumour. He also said that he does not think the tumour is stable. This was a shock to us as we have always been told it is. He was very prompt in contacting Mr Harrison in Edinburgh. We were barely back at home and he phoned us with an update. He had spoken to Mr Harrison. Mr Harrison’s opinion was that there was nothing in Edinburgh that could be done that Glasgow could not do. And he seemed puzzled that Professor Wigmore had suggested contacting him. However, Donnie’s GP said that we would still like a second opinion. This is when he said that, in that case, Professor Parks would be the best person to deal with this. Professor Parks was the specialist who gave Donnie the original diagnosis in Edinburgh and who had planned to do the resection. I do not know how long this is going to take. In past experience, everything to do with Donnie’s treatment in Edinburgh was slow and the communication dreadful. It is all so confusing and upsetting. Part of the problem, I think, is consultants not wanting to step on each other’s toes. Also very little is communicated to us from the multidisciplinary meetings. It very much feels like things are done to my brother with little consultation and sensitivity. Your support is appreciated. LorraineHi Donnie,
Thanks for that. Got to say that I’m not really that impressed with the attitude of your GP. Does the GP fully understand the situation here that your stent might not be working as it should? Does this GP have much experience with biliary stenting I wonder. If it was me, I would be pushing this GP so that I got the referral back to Edinburgh but not just for your scans and medical file to be reviewed etc but for an actually appointment at Edinburgh so that you are seen by someone there.
Don’t give up hope Donnie and do NOT take no for an answer with this GP! Keep pushing if you have to.
My best to you,
Gavin
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