1

(2 replies, posted in General Discussion)

Hya all
I have been looking for the faces of cholangio pictures and am not able to see them. Has this page been taken of or put elswhere.
I was looking for Alans (smith) picture to show someone who at this moment in time is not too well and we were speaking about Alans life.
Hope you can let me know of any changes. love and light alan's mom

2

(26 replies, posted in In Remembrance)

Hya all  and hopefully Jeffs family I still lurk on here every week sometimes more. I came on hear and Jeff gave me so much of himself. I will never forget him or this site.

Since losing Alan my beloved lovely son in 58 days to cholangio, I have also lost my husband of 52 years.
My husband and I had been told just a month prior to Alans diagnosis that he had only one year to 18 months as he had kidney failure. He managed to hang on for an extra year. (diabetes 56yrs).

I now realise I did not have time to grieve for Alan at the time due to my husbands illness. However, after 5 long years,lots of heartache, illness and stress I realise life is getting easier. My tears still flow but I accept them as part of my love for Alan and my hubbie. Alans friends and our family planted a lovely cherry tree and provided a bench for people to sit on at our local cricket ground. My only wish for all of us is that as time goes by we will all gain peace and love in our hearts. Love and Light to you all Alan's mom

3

(57 replies, posted in Introductions!)

My dearest Kelly and family

I feel god wanted me to sign in tonight.
I like to think he only takes the best.

I share with you your utter shock, at the loss of your mom in such a short time. I too  lost lost my darling son Alan within 58 days of diagnosis.
Like your mom so very young, so fit, did not drink alcohol at all and had never smoked.

I am now dedicated to making people in england aware if this dreadful cancer. FIVE years on from Alan and young people are still going so quick.

My heart breaks for you and yours as you start on this new journey.
It will be a hard journey and you will re-call in time all of the wonderful things your mom gave to you, a brave and couragous daughter.

We all on this site will support you (as others did for me)
I would not have coped without the help of everyone on here.

I come on here  every night but often do not sign in.

Thinking and praying for you all love and light Alan's mom

4

(20 replies, posted in In Remembrance)

Dear Andrea and mom

I first contacted you at the start of your journey and hoped and prayed so often for you all that this day would never come.

You have been such a marvellous daughter to your parents and given all of the support that anyone could give.

He didnt suffer pain and passed peacefully, we can only hope that we all have the same care and attention from our families.
You gave such a precious gift that not everyone is able or willing to give so unstintingly.

The pain you all feel is unbearable.
You know in your heart this is the place where we all understand and will be here for you always.

Please God take care of Andrea and her family.
love and light Alans mom

Hya Andrea and mom

You will manage, I know you can do this both for mom and dad.
You will get opposite people thats for sure but have to agree with you District nurses fantastic. I have washed down and cared for both Alan and his Dad thats how I know mom will do it.

Later it will help her to know, she did the hardest thing in life someone can do for another person. We all pass by but once and for you both to do this will one day give you the ultimate feeling that your dad had you both to tend, love and care for him at this level. For me and you I believe it is the highest accolade in life that we will get to achieve.
Giving of ourselves completely to another.
May God keep you all in his tender care. love and light Alan's mom

6

(26 replies, posted in General Discussion)

Hya Andie,mom and family
I keep thinking about you so much.
I have felt so much for you all whilst you have been on this journey.
Oramorph is really good now and will stop any pain.
My hope for all of you is for a peaceful ending. Your dad has shown so much courage and has had a fantastic family by his side. Mom will cope and be brave, she knows she has all of you by her side.

My Love and light to you all
Alan's mom

7

(54 replies, posted in In Remembrance)

Dear Lainy and family
I have followed your journey and guessed time was drawing near. I am so pleased for you both that it was peaceful at the end.
This site is so marvelous at keeping us together at this terrible time, and I am sure you and Teddy have given others so much comfort.
It is your time now to be comforted and relish the memories.
All my love to you love and light Alan's mom.

8

(16 replies, posted in General Discussion)

Hya Andie I am so sorry about your visit to Leeds, I have been reading about your journey. I am sure that you will enjoy this time of the year with all of your family. Make this birthday time special for your mom, she will enjoy all that you can do for them both and this will carry her on in the future. Be Happy love and light Alan's mom

Hya Pauline and everyone else.
I still come in every evening to catch up with you all.
Pauline I think about you often, due to the italy connection. This year I sat and cried during july and august as I wished to go to verona but did not have the energy or anything left to make an effort.
I still cannot understand what happened or how.
Having now lost my hubbie after 51 years,(not cc) I know how hard it is.
During my 9 years of caring for hubbie I feel I did my grieving for him along the way. Alan's death is the one that I am now able to grieve for properly and openly with myself. The shock of cc. is so tremendous, and I had not ever heard of it and I often doubt if many others in the wide world have either. That is other than family who have lost someone to this cancer.
I often sit and cry when I read posts of others who are having to make this journey for it is so hard to do the caring and keep on top of all the other things life has for us.
Yesterday I re-visited some of Jeffs posts, especially the one with a poem he did for me. I cannot help but notice how much more information is now on here about cc and all of its intricate levels of management that are being posted.  So, everyone keep posting any information as the larger base we build on here may start to keep others alive for longer periods of time.
I could not post in any other section, as we did not have any time and I think this site and its information is the  the essence of helping to one day finding a cure.
love and light to everyone on here Alan's mom

Dear Pauline

                    SO BEAUTIFUL
thank you for sharing love and light alans mom

Hya Margaret and all
Welcome.

For me it was  the shock and caring for my husband also at the time of Alans diagnosis that stopped me in my tracks.
He was so fit and healthy, had no worries and enjoyed his work and life.

I feel I know what happened to my husband, but still feel I do not know what happened to Alan in 8 short weeks. From start to finish.
It is ironic that you wrote of a radio play for a good friend of mine has spoke  to me often about writing a book one day about Alan's life and what happened.

Without this site I could not imagine how I would or could have managed as everyone I have spoken to has never heard of cc.
We are never alone on here, for we are bound together for ever with love and comfort in our daily lives. love and light Alans mom.

Dearest Pauline and all of us.
We do try to continue to do our best to keep going do'nt we.

Some days I do not even wish to get out of bed, I find mornings so hard to get going.
I think no matter who or where, grief is so deep and intense it takes such a long time somehow make sense of it all. As you have written Pauline such pain such torment and so many tender memories.

Somehow one day I feel I will learn to honour Alan's life for he lived a life with such righteousness. As for my hubbie, he lived with diabetes from the age of 17years (2 injections everydayfor 56years)  and did his role as husband, father and great friend to his sons with such courage.

I feel someday, somehow we all will have to get of the conveyor and just stand still.
We must honour them all, for I feel everyone associated with this site and cholangio carcinoma is a pioneer for a future generation where others will have no need to weep for the lives and the love of their family members.

love and light to you all
Alan's mom

13

(12 replies, posted in Grief Management)

Hya Gavin
These firsts of everything are so tough on all around you.
Everyone can see how special dad was to you, and you gave your all.

Your family are around both you and mom, speak of memories let there be laughter with the children and you will be both ok.
I promise. love and light Alans mom

14

(33 replies, posted in General Discussion)

Hya Andie I really do know how you are feeling, we had the same trouble as I have said.
Please think about trying elswhere, I have heard the Leeds hospital is really good.
However A&E IS AT THE QE NOW.   (in our case it was still at selly oak)
At least he would be there if a bed became available on the liver ward.
They will not keep him too long in A&E without doing something !!!!!
Hope all goes well.

For all of you at this moment in time I pray for you all.

love and light to you all Alan's mom

Hya Katie
as you say 365 days it sounds such a long time, and it is isnt it without our special family members.

All any one of us can do is to keep their memory alive, talking, sharing and laughing too.
All of Alan's friends often meet up and they literaly howl with laughter.
Alan was always late for every- thing no matter what it was.
Everyone always made appointments at least one hour earlier than required so that Alan would be on time. He told me one day he knew what they did so ended up 2 hours later.
Your HERO sounds like he was a great dad. love and light Alan's mom

Hya everyone I do still come on here and read all about you regularly.
IT is now 5 weeks since I lost my hubby. we would have been married 51 years next month.

I have succombed to a very nasty throat infection and found my self bed bound for over a week. I felt so exhausted and weak. However, it has been so beneficial for I have realised that although Alan had passed away I had not really laid him to rest. Does that make any sense to you all.
I had lost my voice and as I have slowly started to regain it I am now able to say out openly, Alan asked me to care for him and I couldnt stop him from dying. A mothers worst nighmare and I was on my own in the middle of the night at home.
I have been so involved over the years trying to keep hubbie alive (again on my own in the middle of the night) I didnt have time to understand (with the shock) how alan came to lose his life so suddenly with CC. I feel it is time now to find peace about alan and grieve for both of them as they were the best of friends and so relied on me to care for them.  I think we all worry so much at times about doing our best for our chldren,partners, brothers, sisters or parents etc.  I do remember my grandmother many years ago saying however much one  does it will never feel enough.

Also, over the last 2 years my oldest son who lives in scotland was taken ill. I had to rush up there and get back in one day (600 miles) as he eventually was found to have an abcess in his pancreas. He was put on life support and has lost two thirds of his pancreas but is doing really well a year on. ( if Gavin reads this he is the manager of a project in Glagow) and he and his wife foster children in dire need in Scotland.

As a result of our famly's happenings these last 6 years my youngest son has now given up the family business as he wants to train to be a paramedic. He has obained a position as a nurse in one of our local hospitals and has taken a very substantial loss in money.
As he is married with a girl of 7  I have agreed to help him to train and study for what he wants to become in the future.
We have also raised

Hya all I often pop in on here to see how you are all coping.
I hope I dont offend anyone on this site but I know how great you are.

As you know I lost my lovely young son in just 8 short weeks in 2006.
At that time I had been told my husband had about 18 months to live.
This was due to 56 years of diabetes, kidney failure.
At 3.00am this morning I lost him. He had survived an extra 18 months.
It has been so awful having to grieve and deal with Alan whilst at the same time doing the rounds and routine of hospitals. I am totally worn out and now have to start grieving again. I feel so sad and tired. love and light teresa Alan's mom

18

(26 replies, posted in In Remembrance)

Hya jeff's family
if you have visited to have a look, Yes what a fantastic help he was to all of us.
It is but a short time when I came to this site after loosing Alan and it felt as if I had a thunderbolt dropped on me. Jeff you came to my rescue, not only me but everyone on this fantastic site.

Hya both jemima and andie.

I urge you to keep on top of all of the people you are in contact with.

This forum is the place to be at all times and where you will gain the most important and best information ( ask for help on here)  concerning
cholangio carcinoma. Get second and even third opinions if available.

Then follow through with what information you gain from this forum.

My son Alan Smith, was also told in the same manner as your dad andie and I can sense your anger as we felt the same. Alan was treated at the QE BIRMINGHAM in 2006. We also required 2 attempts at stenting and a bag that was eventually closed up etc.

I can only add that if you need to contact me (I am birmingham based) you can through this site etc. You can view alans picture on here and all of my posts.  I wish you both all my love take care love and light Alan'smom

Dear Jennifer I feel so sad for you.
What happens to all our young people, so swift so sudden no chance to realise what is happening.
You have been a wonderful wife  and walked with your man along this harrowing path. We all love you and will be here for you as long as you need us.
love and light Alan's mom

21

(15 replies, posted in Good News / What's Working)

Hya Julia and all
I do look in on all of you every evening. I too am pleased that I am able to write in this section about your wanderful news. xxxx

However, I cannot praise our St Mary's hospice here in Birmingham enough.
They came to our home for the last 10 days or so and were magnificent, nothing was too much. I had a number for any 24 hour calls, so when he passed away in the middle of the night I only had to call and a nurse came and I didnt have to worry at all as she took charge of all of the details, no ambulance, no doctors etc. We were able to get everything done the next day. The hospice then continued to provide me with all free treatments (as Katie has described) and councelling for at least 6 months as it was so traumatic.
Alan didnt go in as  it was only 8 weeks and he asked me if I would look after him in our home, as he did have his own home just around the corner.

So in the time since all of this, we as a family have managed to raise

22

(10 replies, posted in In Remembrance)

I always feel so sad when one of our family succumbs to cc.
Is'nt it amazing how talented in many different ways they are.
However, we are all so lucky to have these people in our lives and are loved by them and as we so do love them too. love and light Alans mom
Allways remembered Rob.

23

(13 replies, posted in Grief Management)

Dearest Sara

What an incredible journey for someone so young.
You are not alone.
Here is where you can come anytime to put any words that spill out.

My journey was much shorter than yours and John's but very much in the same vein. My son Alan when diagnosed was helping his friends to build a climbing wall as the one at the university had been closed down. He was so fit and healthy. I peeked through the bathroom door one day when he was having a bath and saw him looking in our large mirror, I could see the shock in his face.
You and John's parents will survive and each day will blurr into each other.
Time will have no meaning for a long long time. One day in the distant future you will become to realise that life has changed all of you forever. The pain will ease but oh so slowly.

After a very long time I decided to start a book, very simple at first.
My first thing was to copy and paste a lot of the very very special messages that people on this board had posted for Me and Alan. I too copied the poem from Lainy and was so grateful for that. Everyone on here is so magnificent in our times of grief.
Even today, 3 years on and especially as it is christmas time my heart still breakes for the loss of my son.

I weep for you and John and his parents too. all my  love to you all.
Alans mom

Hya Gavin so sorry to hear your news. I look in on our family every night before bedtime and guessed time was an element in your journey.

I know from experience what this journey can be like and all we all can hope is that our loved ones have a peaceful ending.
Right now as of today my oldest son has driven down from scotland to spend a night with us on his way to Coventry to a meeting concerning his work (charity) with children in Glagow. He also tries to do his best whilst living such a long way from us. He knows also what cc. is like when he lost his brother and living some 300 miles away was'nt and easy time for him.
I wish you and mom peace and special time especially over christmas and I know you will talk about when you were a wee boy and how dad looked after you. love and light Alans mom

Hya all

I still come to this site every night before I go to bed.
I read about your travels along this long and winding road and still feel part of it all. I dont know how I would have managed with you all.

It is over 3 years since I lost Alan in 8 short weeks, So healthy, so fit and in his words "mom I am so happy and have  a great life".  When he was diagnosed he told the doctors at the hospital, I am blessed beyond belief with all of my friends. Guess what, still today and so often these friends, young ladies and young men with busy lives continue to come and see us or ring to see if we are ok.
I have found it is the people that I expected to understand are not able to  comprehend how awful it is to loose someone so close, a child who was also my baby.
They go quiet when I speak of him, it is as if because he is not physically here he has completly disappeared. Some say they dont know what to say, others say it is time I MOVED ON. As if I am going to another planet or something. I have been learning some different crafts etc and my life has changed.

However, my heart still aches, some days pass by and lots of things get done and there are others when I sit and ponder about how it could have happened. It does and will get easier but it is no mean feat, we will all never be the same again and our loved ones will be at peace.
Love and light to you all   Alans mom