Kate, hopefully a moderator will revert, however your  penultimate paragraph is so upsetting . Something  really has to be done to stop this type of thing. I am so sorry to hear all but to leave people not knowing is so unfair.

Thank you for your response. It means a lot. 

Honestly it’s the not knowing that is the worst, we know it’s cancer and we have dealt with that but to be waiting all this time and still not knowing how serious it is or isn’t is beyond. We are still in the “60 day” turn around period so have been told that we can’t really do anything else other than wait.

They haven’t even discussed inserting a PEG or any help with his weight management. What about all this bile he’s spitting up is that ok? It’s just so frustrating....He’s lost around 2.5 stone and can only sip at drinks... 

Thanks for reading my rant  ️

That really is intolerable treatment given your dad's condition and your stress.  I would contact the PALS (Paitents and Liaison ) at the hospital and ask for an urgent update on your dad's condition.  It just seems a very cavalier way to treat people who desperately need information.    So sorry that on top of your distress at your dad's deterioration you are being given the run-around.  Annie

Hi Annie, 

Thank you for your advice. I will try doing just that. It does see all very blasé and while I know there are lots of people going through the same thing, you can’t help but feel angry at there seeming lack of concern. 

Dad is putting on a brave face but you can see how much he’s struggling. 

Thanks

Kate 

Hi Kate,

Just wondering what the latest is. You've been in my thoughts.

Hi,

well it’s been a long week. I went to see my dad Monday and he was in a very bad way. I had to take him into hospital and it was discovered his throat had completely closed up and could no longer tolerate any fluid intake. He was hooked up to drips and Thursday was finally fitted with a stent. He’s since had a few yoghurts and other bits which has been amazing. 

However, we were told while he was in hospital that the cancer has spread to his liver as well so he is terminal and will Only receive palliative care. To be honest I don’t think it’s quite sunk in yet.

How is your dad getting on? How are you today? X

Hi Kate,

I am so sorry that your dad's not in a good way, but please know that I am thinking of you.

The situation with my dad isn't much better. It's looking like his cancer has spread to his bladder. In addition, he's started being sick again, so is awaiting an endoscopy to determine if his stent has moved, or is now being blocked by the cancer. x

Aww I am so sorry to hear you’re in the same boat. It’s such a terrible time. I hope that you get the endoscopy soon and get some answers. It’s awful to feel so helpless.

Dad is so tired at the moment, he’s napping a lot. I just hope he can gain some weight so that he is stronger when Chemo starts. 

It feels like for one step forward you take, there’s always several taken back

Thinking of you too

Hi Kate

Sorry to hear of your situation. My dad has a similar diagnosis although has already had chemotherapy surgery and radiotherapy. 

It sounds like he has got the help he needs with the stent and being able to eat something. My advice though is to be pushy and ask for dietician referral as well as following up your diagnostic appointment- we had a three month period where my dad was coughing and vomiting after food and he was just fobbed off a lot until he saw a dietician who took his symptoms seriously. He has an NJ tube now which isn’t ideal but is helping him get the energy he needs but tried many of the dietary supplements and couldn’t keep them down. They really tried though. 

My dad is currently in hospital with pneumonia; we are hoping he will get over it so he can start his palliative chemotherapy. It’s so tough. 

X

Hi Josephine,

I’m sorry to hear about your dad, I wish him a speedy recovery. It’s so difficult isn’t it. I do worry that dad could too catch a cold etc. As he is so thin and fragile at the moment.

I appreciate the advice ️ Dad had a bad day yesterday and was sick after his dinner yesterday. I guess it’s still early days but is that normal? He is so very tired and spent most of the day napping. 

I think that he maybe trying to do too much, he was discharged from hospital Friday and was out and about all day Saturday.  Do you tell your dad if you are worried? I find it hard to know what to say. I want dad to enjoy what time he has left but I think he needs to rest and gain some weight before he’s out all day etc..

My step mum is writing down what he eats because I don’t think he’s getting enough nutrition. He’s eating melon and yoghurts mainly. I do think Dad will need further intervention later down the line. 

I appreciate all the advice ️ Xx