lorraine-scotland

Hi there,

Thaks Marion and Gavin for your messages. Just to let you know Donnie got the drain fitted last Thursday in Glasgow and the op seems a success although it is early days. He is still in hospital and has some pain. However, the bile is now flowing out of him. I think he is on bag 13. His bilirubin levels are dropping slowly but surely. Such a relief!

Lorraine

Hi,
Thanks Darla, Gavin and Lainy for your support. GP said that a referral to Edinburgh has been made. Edinburgh says that it has not been made. Where the truth lies I do not know. GP has said he will phone Edinburgh tomorrow.

In the meantime, my brother phoned his consultant’s secretary in Glasgow today as he was previously advised to do if his bilirubin kept on rising. At the previous consultation they said that, if this was the case, they would arrange a CT scan and endoscopy if required. Today the secretary said that the consultant was on holiday for 3 weeks and, after speaking to one of the other doctors in the team, told Donnie that he would need to go to his GP to get referred to Accident and Emergency. I feel really angry about this. Going to Glasgow Royal Infirmary’s A&E is soul destroying. There is usually a wait of about 5 hours sitting on hard uncomfortable chairs surrounded by drunks and a mishmash of people with broken bones and injuries. Eventually, you get admitted to a ward where you sit in a bed for days waiting for something to be done. Anyway, Donnie, thank the Lord, does not have an infection. He should not have to go through. A&e. His consultant’s team should arrange a CT scan which he could attend as an outpatient appointment and then arrange for a day when he could go in for the endoscopy to unblock the stent perhaps with one overnight stay. It happened once before like this and it was a much more sensitive and humane way to be treated. It also avoids the unnecessary use of a hospital bed that could be used for someone else.

Anyway, we have asked the GP to ask Glasgow Royal Infirmary if this would be possible. it makes much more sense. If this does not work, I think we will play the beserk card!

Lorraine xx

Hi,

Donnie had 2 or 3 good weeks when his bilirubin was drifting down slowly. However, this week it suddenly surged upwards by over 50. It is now nearly 200. Our GP has requested a second opinion from a Edinburgh Royal Infirmary but so far nothing…….Unfortunately, this has been our experience of Edinburgh. Nothing seems to happen very qiuickly. I hate to be negative but this is the reality. When Helen from AMMF said that Professor Wigmore suggested that our GP refer Donnie to Edinburgh this is what we asked for but his colleague Mr Ewan Harrison seemed reluctant to do so saying that there was nothing they could do that Glasgow could not offer. We said that we still like to proceed with the second opinion. I don’t know whether the fact that the stent seemed to be working for a couple of weeks seems to have slowed everything down. We will try to phone Edinburgh tomorrow . Fingers crossed!

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. Lorraine

Hello Donnie , Lorraine’s brother here . Thanx for info on my behalf , it’s a year now since I was diagnosed with CC. On positive side my tumour hasn’t grown but on negative side caused havoc with my digestive system . I have been currently back and forward to glasgow royal infirmary to have my stents moved and unblocked through endoscopies . Looks like the stenting isn’t working , my bilirubin currently is at 209 with the associated conditions connected with high bilirubin levels. It’s all become frustrating to extent of being farcical. Is there anything else that can be done? Dread consequences at moment if cancer starts to grow! Have dealt with Edinburgh in past and have met prof Wigmore but he’s never been my consultant the last time I was in Edinburgh was about October of last year , I will contact my GP with view to returning to edinburgh .Once again thanx for help and info and I’ll be in touch donnie

Hi,

When my my brother got the metal stent fitted his bilirubin soared to 300. The following week it came down to 200. This week it has gone up by 5 so it is more or less stayed the same. He gets his bloods checked every Tuesdaty by the GP and the results on Wednesday. He would consider going to Manchester for a second opinion. We appreciate your support. Thanks again.

Lorraine