Hi all

thought id update on what’s happening.

after now 3 months of tests we are still none the wiser, A repeat MRI is showing no change in Marts tumour, it’s still there and hasn’t grown at all. As the doctors were so confused here they referred him to a specialist, we have had to beg people to take us & mostly it’s been a total waste of time & money that we just don’t have. So I hunted down this specialist as I got the idea after seeing so many minions that this specialist probably hasn’t even been told of Martins case, I managed to find him at his private clinic and took the chance of emailing him at the private clinic telling him all that we have been through the last 3 or so months and that he is the specialist Martin was supposed to have been referred to. His private secretary read my email & was so upset for us that she passed it to him, The specialist actually emailed me back from his own private email, he now knows all about Martins case and he had the xx hospital call Martin in for another ERCP with spyglass this time and biopsies, not just brushings, under general anaesthetic so as they could collect as much as possible & he also made sure that Martins wish NOT to have any stent fitted unless it is totally nessasary.

yesterday we once again went to London, leaving at 5am for a 10:30 appointment, the procedure was done by another different doctor owing to our specialist not being at the hospital until next week, he arranged for this other doctor to do it. Martin is still gaining weight & has not turned yellow again, his only symptom now is lethargy & I think a lot of that is down to stress. This test should at last tell us if this tumour holds cancer or if it could be a very rare benign tumour, you all know what will happen if the find cancer, he will have the choice of dying from the cancer or risking having the tumour removed which is an operation with a very high mortality rate. If the tumour turns out to be this very rare benign type, well that’s not great either as it will also kill him but with the correct treatment not so fast and things can be done, but once again it’s that very risky operation to remove it or leave it meaning he will suffer in flares, Will at some point have to have stents and each flare will destroy more & more liver until the only option is transplant & removal of tumour.

of course what we both want is time & so we are still clinging onto that teeny weeny glimmer of hope, the doctor yesterday was still talking cancer, but he didn’t see Martin back at the end of September when he was bright yellow and near 3 stone lighter than he is now, he actually looked close to death back then, but now, apart from wanting to sleep a lot, to look at him, nobody would know anything is wrong with him, he is still eating loads with no problems, no more dark pee, no pains, no yellow skin, nothing at all, so here we are, having given up our house & moved us into a tiny one bed flat thinking Martins going to die and I will be left to cope alone ( he is supposed to be my career, I’ve ill health myself) it’s more than three months down the line and having lived with all this for all this time we both look like we aged 10 years & that’s the truth, myself I feel the past 3 months have felt like 3 years and I’m gripping onto sanity by my fingertips, he’s my soul mate, I can’t bare the thought of being without him.

but all of you here , you either have this awful cancer or have a loved one that does, how do your stories sound compared to mine??? After reading my post which way would your minds all be thinking, does Martin have cancer of is he going to be one of the less than 1% of people with this tumour that turn out to be the benign type? We still don’t know, it sure doesn’t seem like Martin has cancer to me, I’d be interested in any of your input.

we now have a 5 to 7 day wait for the invasive biopsy results which should at last tell us one way or the other, which way would you all think the pendulum will swing??? 

Thank you for reading, sorry it’s long I’ve tried to keep it as basic as possible. Oh and Martins tumour is type lV meaning it’s at the point where the tubes divide so it affecting both tubes/ducts and the main one too & he just about got away with no stent once again.

Apes xxxxx

just dropped by to say i am praying for you xxxx

Hi Apes.

I've just been reading your posts, it sounds like you have both had an awful time but hopefully the ERCP will give you the answers you need.

I wanted to say I had a blocked bile duct 2 years ago as my gallbladder was full of the blighters, I was very jaundiced and the weight dropped off me. The drs told me i needed an ercp but by a miracle my stones passed and my jaundice went so i didnt need the ercp i just had y gallbladder taken out.

 I know this isnt the same as your husband but if he had a stone blocking his duct and it worked its way out then his jaundice would go and his appetite would come back like mine did, just a thought.

Sending you best wishes.

Linda x

hi Lynda

I wish I could say it was gallstones, I’ve had my gallbladder removed because of those, but alas no stones were found, Just a blinkin great tumour, So kind they even gave us photos of it, we are thinking of now giving the vile thing a name we waited so long, every day has been like torture. The ERCP from our hospital showed the tumour to have no cancer, this is why a specialist has been involved, this time it wasn’t just ERCP but some actual biopsies as they say last time was brushings which can show false negative, this time they took bits out and also used a spyglass, something that needs a specialist, we should get the results by the end of the week, we are terrified, but at least we will know what the hell this tumour is and if anything can be done about it. Thank you for your reply xxx