Hi Gavin,

Sorry I also meant to say we don't have the services of a Macmillan nurse yet. Dad has a district nurse that visits every few days but really only address his bed sore that he is still recovering from after his extended stay in hospital.

Actually as a family we don't feel the overall care is particularly "joined up" right now. The Royal Marsden were great but since he left and he is in the hands of the palliative care team it is hard to know who is actually in charge of everything. We are trying to sort this out at the present time.

Thanks again!

Joel

Hi all,

Sorry it's been a while but life has been slightly all over the place of late. Thank you for all of your messages, and the link to the AMMF website - it's all much appreciated.

Dad is now at home and still fighting but is now beginning to complain of pain rather than just discomfort in his abdomen. He is also beginning to not want to get out of bed some days (and perhaps sleep a little more). He is still doing his best to eat and drink, some days are better than others as you would expect.

Dad has also become more distant and is very quiet, sitting watching tv most of the time. When we visit (with his granddaughters 8 and 14) he usually manages to perk up for a few minutes but then resorts back to being quiet and almost on his own. As you can imagine this is unbelievably hard to experience for everyone concerned as we are desperate to make the most of our time with him.

It is so out of character for Dad who was always so full of life and conversation. I often wonder if this is down to the cc or if this is Dad's way of dealing with the situation. I know everyone is different but have others witnessed a similar progression?

Thanks again for the support offered by the forum,

Joel

Hi everyone,

This is my first post to the board having stumbled across this unique resource through Google.

Back in November my 65 year old Dad was diagnosed has having a Klatskin tumour. He had been admitted to a hospital abroad having presented with jaundice. At the time the hospital put in place a plan to drain the bile from his system and then to remove the tumour surgically. At the time it was important to my Dad to get back home to the UK in order to have treatment here.

We had him transferred back at the beginning of December and after getting him into the system here he was admitted to the care of the Royal Marsden in London. The plan was similar, he was to start the draining process and then move on to surgery however the path has not been so straightforward. Initially the drainage did not happen too fast but after a few days it started to move along (I forget exactly the units for these numbers but he started around 500 and they were trying to get them to below 50). At this point they did surgery to embolize one side of the liver in preparation for resection.

Shortly after Christmas he suffered an infection and was admitted to the Critical Care Unit for a few days suffering from dehydration and a severe fever. A course of antibiotics worked and a few days later he was transferred to a ward and then to home. At this point the drain was still doing it's thing and he was due to go back for a CT scan and follow up at the beginning of February.

After a week at home his condition deteriorated and he was taken back into hospital and admitted back to CCU. This time the infection was worse and by this point the concern was not directly the tumour but on controlling the infection and protecting his heart. He ended up having surgery again and this time they put a second drain in to unblock the other side.

Since recovering from this second bout of infection we have now been told that the tumour is now inoperable. As you can imagine mentally this has been a huge blow. The whole process has been an emotional rollercoaster for my father and the entire family - it seems like every step of the process is fighting against him.

Currently the planned next steps are to insert stents for internal drainage (now the infection is under control) and then to explore chemotherapy options.

This is what the hospital is currently proposing but I would be keen to hear what other people think and particularly any experiences in the UK?

Thanks in advance.