Dearest Lainy,

Sending (((hugs))) love and positive vibes from across the pond.

I will be thinking of you.

Andie xx

Hi Lainy,

Hope you are keeping well.  I will pass on the kiss to my not so little boy!! he will be 13 in May and is now taller than me, something he likes to keep reminding me and my Mom of.  He asked my Mom what the weather was like own there today! he's sooooo cheeky.

I see so much of my Dad in him, which is a great comfort. I know Dad would be proud of the young man he is becoming.

Sending a big ((hug)) your way xxx

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 All,

As you know February is CC Awareness month, it is also the month I lost my Dad, 3 years ago today, to CC.  Part of AMMFs February awareness are Guest posts on their facebook page.  My Guest post is today (day 19) so I thought I'd share mine and the others with the rest of my CC family.  Even though I don't post or visit as often I still think about you all.

Lots of love

Andie x

https://www.facebook.com/pages/AMMF/347 … 11?fref=ts

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(2 replies, posted in In Remembrance)

Hi All,

I can't believe it has been 3 years today since I said goodnight to my precious, wonderful, kind and caring Dad, my hero.

As you know February is CC Awareness month, in the UK the charity AMMF is raising awareness in many different ways, one of them being a daily guest post on their Facebook page.  Today is my guest post day, I am posting a link so you too can read mine (CC guest post Day 19) and the many others that have so far been posted.

https://www.facebook.com/pages/AMMF/347 … 11?fref=ts

Even though I don't visit this site so often now, i want you to know you, my CC family are always in my thoughts.

Lots of love

Andie x

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(27 replies, posted in Members' Cafe)

Hi Lainy,

What a wonderful idea, count crazy little me in!! 

Do you want us to email our stories and introductions to you?

Love Andie xx

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(11 replies, posted in General Discussion)

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 lovely Lainy.

My Mom has been having what she describes as balls of light fly across the room and hover by her side, whilst she is in bed.  She has been very down lately and I believe it is Dad saying he's ok and still with her.

I have been finding white feathers everywhere too.

Keep believing!!

Love and hugs

Andie xx

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(5 replies, posted in Introductions!)

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

Welcome home Lainy!!

So glad you had a great time at your Grandsons wedding, but like you say there's no place like home.

Ant is on Asacol tablets for his UC.  It seems to be working for him at the moment but he hasn't had UC that long.  I'm keeping my fingers crossed they find a cure for this condition too.

Hugs

Andie xx

12

(167 replies, posted in General Discussion)

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

14

(167 replies, posted in General Discussion)

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

15

(8 replies, posted in Members' Cafe)

Beautiful words from a beautiful lady. 

((hugs))

Andie x

16

(3 replies, posted in Members' Cafe)

Hi All

Just thought I'd pop in and say hello.  Even though I don't post much I do pop in now and again to see how you are all doing. The CC bond is too strong to break.

I keep in touch with a few of you on Facebook, if any of you want to add me just search for "Andrea Fear was Clark" or search me through Gavin's friends.

I've been busy as usual, my Jamie turned 12 Friday so we had a busy weekend at Thorpe Park Theme Park and the Harry Potter Studio Tour London.  Jamie got to open the doors to the Great Hall at the start of the tour because he was celebrating his birthday. 

Mom is still having her down days but she is also having more up days too.  Looking back she has made so much progress.  She has now got her pensioners bus pass so she can get out and about when I'm at work.  Lainy she still leaves the doors open but Dad still lets her know!!

We went through a rough patch a few months ago when Ant lost his job, during that time the white feathers would turn up in the strangest of places.  It was as if Dad was saying it will be ok.  He was right, after a few bumps in the road, Ant is now settled and we are doing ok again.  He's also managed to get his Ulcerative Colitis under control after a scare, his scan was fine and the Doctor has now put him on yearly check ups, which is a bonus.  Mom was a tower of strength to us during these tough times and I really don't know how we would have coped without her help.

Lainy, enjoy your Grandson's Wedding, I look forward to hearing all about it and I just know Teddy will be right by your side. Enjoy your break and family time.

Love to all

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 smile

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

That is WONDERFUL news :-)

Sending love and hugs your way

Andie x

21

(56 replies, posted in Members' Cafe)

My dearest Lainy,

So sorry to hear you haven't been too well, hopefully next time I check in on my cc family you will be back online.

Sending lots of love, hugs and get well wishes across the pond.

Andie xxx

What wonderful news!! Hope you all have a wonderful Christmas.

Andie x

23

(25 replies, posted in General Discussion)

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

24

(14 replies, posted in Introductions!)

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.

www.ammf.org.uk

Take care

Andie

Wow, what a wonderful reading for you.  I'm so happy for you Lainy. We always knew he'd be looking out for you.  My Husband has UC, it is playing him up at the moment, he is booked in for the camera again in December. Be careful driving and go buy a lottery ticket, Teddys orders!!

Take care

Andie xx