andie
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Dearest Lainy,
Sending (((hugs))) love and positive vibes from across the pond.
I will be thinking of you.
Andie xx
Hi Dan,
This sounds like great news to me. From experience with my Dad, I know that once the bilirubin starts falling it’s a good sign the internal stent is working. Have they mentioned capping the external stent off? I know my Dad used to have this done once the internal stent was working.
My Dads bilirubin was 600+ and I know how much it means to get it down to the magic 50 for chemo.
My Dad was also told to drink lots to help flush the bile through, he also had lemon n warm water morning and night and drank tomatoe juice. I’d read these helped the bile and the jaundice, Dad liked them both so it was a bonus!
Sending lots of luck and positive vibes.
Andie
Hi Jules,
Whilst it was too late for Professor Lodge to help my Dad, Professor Lodge and his secretary were brilliant from start to finish. He personally emailed me back, helped chase scans and when we did get to see him, Dad was seen, had a CT scan and Professor Lodge even came out of a meeting to tell us the results, all in the same day.
Wishing you and your Mom all the luck in the world.
Andie
Hi Heather,
Hopefully by the time you read this Gordon will be more comfortable, my Dad suffered with bloating and gas after both his ERCPs.
Thinking of you
Andie
Dear CurlyWurly,
I’m so sorry to hear of your Moms progress. I can 100% understand how you are feeling with regards to Prof Lodge. When Dad was diagnosed he chose to listen to Dr Bramhall at the QE and have chemo, we never got to chemo due to Dads bilirubin being to high despite 3 metal stents. I often wondered if I should have pushed Dad to see Professor Lodge sooner, rather than when we were told in the September that chemo was no longer an option. I felt we wasted 6 months but this was my Dads choice and we had to respect it. I did write to the macmillan nurse Catherine at the QE after Dad died and she passed my email onto Dr Bramhall highlighting my concerns regarding not operating on Dad as Professor Lodge would have done. He replied to me offering to send my Dads scans to another hospital for their advice as he was certain an operation wouldn’t have saved Dad, it may have given him a few more months but the quality wouldn’t have been good. This did make me feel more at peace with our decision. He would have spent his last days possible in Leeds, miles away from family. His wish was to be at home, which luckily was able to be. Perhaps you could mention this and all your other concerns to the QE, and see what they have to say.
As for weeks or months, nobody knows. Nobody as a expiry date stamped on them, and I know it’s hard but you really have to live day by day. Dad was told by Russells hall hospital he’d got 2-3months, he went on a further 7. My heart breaks for you as I can remember every day of Dads journey with CC.
Thinking of you all x
Heaven has gained another beautiful Angel.
Thinking of you all at this heartbreaking time.
All my love
Andie xx
Hi Curlywurly,
I hope they manage to get your Moms pain under control asap.
Whilst my Dad wasn’t able to be treated by Professor Lodge, the treatment we received on the day of our consultation was outstanding. Dad and I met with Professor Lodge at 9.30am, after a chat and an examination he arranged for a CT scan and blood test to be carried out. He even came out of his meeting at 3.30pm to give us the results face to face. We stayed in the hospitals hotel, which is free for the patient and partner, and I think i paid £25 for my room. We travelled up the night before because our appointment was early in the day.
I emailed Professor Lodge directly then he put me in touch with his secretary, who once had recieved my Dads original CT scan and Professor Lodge had looked at it, phoned me and booked an appointment for the following week. She then gave me the telephone number for the hospital accomodation. If you search Professor Lodge on here there should be some posts regrading him.
Good Luck
Andie x
Pam, just to let you know I am thinking of Lauren, you and your family, and sending lots of love and fighting vibes your way!
Keep Kickin CCs butt Lauren, you are a star!!
((hugs))
Andie x
Hello my dearest Lainy & Marion!!
Even though I don’t post as often you and the rest of my cc family are always in my thoughts. The bond we have is way too strong to break.
I keep in touch with a few of my cc family on facebook, hence Gavin getting in touch with me about CurlyWurlys post. If you have FB please add me (Andrea Fear was Clark).
I won’t take up the post here so will post in the members section
Love and (((hugs))) xx
Hi CurlyWurly,
I live a few miles away in Upper Gornal. I found this site when my Dad was diagnosed in 2010. I’ve made some great friends on this site and it was a godsend when my Dad was fighting CC. Gavin facebooked me tonight to tell me a new member had posted who lived nearby! So first of all “hi” x
My Dad was diagnosed after 5 weeks in Russells Hall Hospital, he was then sent to the QE under Mr Bramhall. It was there he had his first metal stent fitted. Dads CC was inoperable due to the position of the tumour. He was offered chemo but his bilirubin level never came down to a safe level to start it, despite having 3 stents. Each time chemo was scheduled his blood test would show high bilirubin levels again. In the end he had an external drain fitted too to help drain the bile. The fact that your Mom has been able to have chemo is very promising.
Does your Mom have a metal or plastic stent? Perhaps it needs cleaning out, which is very common. My Dad was given permanent antibiotics whilst he had his stent to help prevent infections, which seemed to work for him. Perhaps you could ask about this for your Mom. He was also told to drink, drink and drink, to help flush the bile through. He had warm water with lemon morning and night and lots of water/squash throughout the day.
Have you had a second opinion? We asked for Dads CT scans to be sent to Professor Lodge at Leeds, as he is prepared to operate of cases that the QE won’t. Unfortunately by the time we took Dad it was too late to operate (he would have operated from the scan he was sent) Mr Bramhall wasn’t too happy we wanted a second opinion, and whilst I do think the QE are a good team, it was more for our piece of mind that we had ticked every box, as you can understand we didn’t have the hope of chemo.
Good luck with the scan, from experience the run up to it can be more daunting than the day itself.
Please keep in touch, if just to vent your anger, thoughts or worries, we have all been through/are going through this journey, and we are all here to help.
Take care
Andie
A spoon of sugar helped my Dad. He sometimes had them after a stent procedure.
Hope this helps
Andie
Thinking of you Rena, your Dad is in the best place for this to be sorted out. Keeping everything crossed he’s back home soon. Stay positive.
Hugs
Andie x
Sandie,
I am from the UK. There is a charity in the UK called AMMF, the UKs only cholangiocarcinoma charity. There isn’t a forum as such but there is information on their internet site. Helen who set up the charity in memory of her husband Alan is extremely helpful. They have a facebook page too.
Take care
Andie
