Introduction My brother’s fight with Cholangiocarcinoma

Dear Lorraine,

My heartfelt condolences are with you. I am so very sorry. You were so supportive to your brother and I’m sure that helped him over the past years.

Take care of yourself now.
Catherine

Dear Lorraine,

I was saddened to hear that Donnie has passed away. You and your family have my deepest sympathy. Take comfort in memories of the past and keep him with you forever in your heart and those memories. My thoughts are with you all at this sad & trying time.

Hugs,
Darla

Lorraine…..my heart goes out to you and your family. Know that Donnie is in forever engraved in our souls. He we not be forgotten and he will continue to guide us in the drive for finding answers to this insidious disease.
Hugs and love,
Marion

Hi,
Thanks for your messages. Gavin it is The Royal Infirmary in Glasgow that was treating Donnie not the new hospital. Thankfully, Donnie will now be under the care of Edinburgh except if he gets an infection and then we would have to go to Glasgow.
Lorraine xx

Hi Lorraine,

This news from you about Donnie just made my night!! Thank You!! Tell Donnie from me…. Ya Beutie, love it!!! Give him a big hug and kiss from me as well!

Real glad tgo hear that Prof Wigmore at Edinburgh was able to help and do all of this etc and I would say that if it was me then I would want to be kept under his care and not Glasgow’s. Do you think Prof Wigmore would be ok wit that?

As to what and why Glasgow did not do/offer what Edinburgh did, is the hosp in Glasgow that Donnie was now being treated at the new one? A new team, perhaps inexperiened with treating CC patients, unlike Edinburgh and Steve Wigmore? Just thinking out loud here.

Hugs,

Gavin

Hi,
Lorraine here. Really good news. Professor Wigmore arranged for Donnie to be admitted into The Royal Infirmary in Edinburgh. He was admitted last Monday, had CT scan on Tuesday and got his drain replaced on Thursday. He got the great news that the tumour has not progressed. The drain is now working wonderfully. Such a relief! It was blocked and it urgently needed replaced given the fact that it had been fitted 9 months ago.

The main thing is that all this has now be done and we are so grateful to this forum that spurred us on to contact Edinburgh. However, we are left with questions. Why did Glasgow say a CT scan was too risky when Edinburgh did not? Is it a question of money? Why did they say It was too dangerous to replace the drain when Edinburgh said it was relatively straight forward? Do Glasgow lack the knowledge and expertise to treat patients with CC ? How could all the doctors at a multidisciplinary team meeting agree that nothing could be done for Donnie when clearly it could? Is it that they just agree with what ever the main consultant says. If so, what is the point of this meeting? Don’t worry I do not expect answers to all these questions but wanted you to know our train of thought. We were told in the past that there was nothing Edinburgh could do that Glasgow could not do. This is clearly not the case.

We are not sure the best way to express our concerns. If Donnie were to get an infection he would need to be treated by Glasgow. An hour and a half journey through to Edinburgh would not be an option especially if it was cholangitis which he has had in the past. However, we have no faith or trust in Glasgow anymore. They let my brother down big time. However, I feel we have a duty to protect future CC patients who may be put in Glasgow’s hands.

Thanks again for your support. It has been invaluable.

Lorraine xx

Lorraine……..agree. You deserve a clear answer and no one seems to give it to you. There are clinical reasons for Donnie’s condition i.e. increased bilirubin levels and whether it is related to liver cirrhosis or other causes. Not necessarily does this demand a CT or MRI because; a patient’s medical chart contains the information needed for physician interpretation of health status. Donnie has a right to know the underlying causes of the present conditions.
Personally I experienced a similar situation with my mother’s physicians in Germany. We were told that she had suffered a stroke and no further information was given. I am used to and appreciate American physician’s openness in re: to clinical information sharing with patients and their requested loved ones. Unfortunately, that’s not always the case in other countries. So, I waited it out and stood by the door while medical personnel (doctors and nurses) had to pass by me to tend to my mother. My sister was aghast by my behavior, but eventually it paid off and the leading physician asked to speak with us in private.

I would not give up, Lorraine, people throughout the world read or participate on this forum and all of us want to be assured that Donnie is treated humanely and kind and tended to with expert care.
Hugs,
Marion