so horrible :'(

[LittleMountainGoat]

Hello, first post.

My dad's dying.

He's 75, and was diagnosed with inoperable PC in January following a period of hospitalisation for jaundice where he was given a stent. He's also not a suitable candidate for chemo. He was told that radiotherapy was an option, but it would involve travelling to Oxford over an hour away every time, which, for reasons below, just wasn't an option. My parents waited until I visited them until they told me. That was on March 27th. I live a couple of hundred miles away (I'm in South Wales, and they're in Bucks). I've been back twice since then, and my next trip is planned for the weekend of Father's Day this month.

He's lost the ability to walk. He was taken into hospital in April following him unable to even crawl upstairs to bed. Whilst he was waiting to see a doctor, they transferred him to another hospital where they hoped to have a bed for him. In this hospital, he slipped on a wet patch in the toilets and broke his ankle. After spending 5 weeks back at the original hospital where they transferred him back to, he was allowed home where he is now in a hospital bed downstairs where we are all coming to terms with the fact that he will never walk again. He's got a catheter in, and the urine in it is approximately the colour of John Smith's Bitter ale. He's using a commode but no more than twice a week. He's turned yellow again, and has lost quite a lot of weight (although, at 18 stone when he was well, he's got quite a lot of weight to lose). He's off his food and, as a man of 18 stone, he was clearly a man who loved his food. At my most recent visit, last weekend, my mum said he's got chronic kidney failure but that he doesn't know it. He's conscious and aware when he's awake, but he's sleeping a lot. He's lost interest in many of his interests, partly because so many of them involved being outside (gardening, theatre, running a jazz appreciation society etc.).

It's horrible to see. Although we've had a turbulent relationship over the last decade (with different periods of one of us not speaking to the other and vice versa for reasons I won't go into here...) I can't bear to see someone suffer like this. I've had pets put to sleep when they're like this.

I hate seeing what it's doing to my mum. She's not eating properly (she's lost half a stone in 6 weeks), and she's not sleeping well. There's a combination of district nurses and carers coming in 5x a day, which means she always has to be around and awake to let them in. Fortunately, she has a good network of friends and neighbours around who do actually mean it when they say "if you need anything...", from people who take her shopping to people mowing the lawn for her, and Macmillan are coming to "babysit" (as she put it) tomorrow to let her have a few hours out of the house.

It six months after diagnosis, he's already had the average amount of time that most patients have. Every day I wonder if this will be his last. Every time my phone rings, I jump, worried. I've told my mother that if she wants me to, I'll quit my job and move back to help her, but she's told me not to for risk of ruining my future (I hate my job anyway though, so I've told her I don't mind!). I feel powerless, I just wish there was somethign I could do

[Nardobd]

Hi Goat and welcome to our little company, although I'm sorry it's one you've had to join. I was intending to respond earlier but I had computer problems.

I'm so sorry to hear that your Dad is so unwell. It may be kidney failure which is affecting the colour of his urine and skin but it could also be a recurrence of the jaundice.

It's difficult when your husband has advanced cancer (my husband, Ted, was diagnosed in Jan 2009) and I'm not surprised it's affecting your Mum but it does sound like she has a good support system around her. Please don't take this the wrong way but the risk of ruining your future may be only one factor in her decision that she doesn't want you to move back - I love my daughters dearly but I wouldn't want them to come back home to help look after their Dad. That's partly because I feel like it's "my job", partly because I want to be his primary caregiver, partly because I think it would probably cause arguments and friction about "what's best" and partly because every day with Ted is a privilage now and I want to spend time with him, not worrying about whether someone else is comfortable. I know that they would be trying to "help" but I'd hate it. I'm sorry if that upsets you.

One thing you can't worry about in this disease is "averages". Some people die very quickly after diagnosis. Others, like Ted and one or two others on this board, are lucky enough to have considerably longer than the "average" time. It's all about the individual. We are all powerless when it comes to advanced pc and that is one of the hardest things to come to terms with for me (I've always been a "do-er" in life) but I've had to learn to take one day at a time. As for doing something: you are! You're caring and concerned and loving. That's all anyone can do. There's no grand physical guestures anyone can make - it's about being there (albeit from a distance) and trying to make your parents' lives easier - even if its via regular phone contact or whatever.

Do let us know how your Dad is getting on from time to time and how you and your Mum are coping.

Best wishes

Nicki