Wish someone would help him

[Didge]

Hi Leila. All I can say is that I'm thinking of you and hope you get some help today. I know opiates are supposed to stop diarrhoea but I'm sure they will have considered that already.
x

[Fifi]

He is very dehydrated. He can't drink anything. All it takes is a small sip of liquid and you can hear his stomach bubbling in the next room. One glass of water lasts him from morning till bedtime.

Cathy- Possibly another 2 week. His oncologist has told him it is very doubtful that that is what he has, as they have already done a biopsy on his cancer. They only did the test because I asked for it.

Thank you janiebobs.

Didge- Thanks. He is already on them. They say he is already taking a " not recommended amount", and that still doesn't work.

[Cathy]

Hi Leila

He does need to take as much fluid as he can.. And will need to replace salts as well. I can understand from what you have said that he might not fancy water but being dehyrdrated will make him feel worse.

Can the GP chase up the test results? Forgive me as I don't remember, but does he have a palliative care nurse yet??

Cathy xxx

[Fifi]

Hi Cathy.

He does want to drink, he's desperate to drink. It is just the slightest bit of fluid he drinks, he is on the toilet within 10 minutes. He is having a lot of salt. He has always liked a lot of salt on food, and taking him loads of salted crisps round.

His GP isn't worth speaking to. He doesn't know anything. His oncologist on Wednesday said the results should be another week, but basically said he did the test " for your daughter".

He doesn't have a palliative nurse. All he has is a district nurse, a shaky one, who is scared to change his PICC line dressing. He asked for a Macmillan nurse but they keep telling him that he is too fit for one.

Leila xx

[Cathy]

Hi Leila

Be careful with the salt overload. I was thinking of rehydration sachets..?

Re MacMillan nurse, we didn't have one for ages and Jonathan wasn't interested for a while.. Our local palliative care unit were very short staffed but they were super when they became so... It sounds like you could do with that help. I just rang them for a chat which helped. You could give that a go maybe and ask what they can do to help At least that will give an idea of what they can provide?. Xxx

[Fifi]

I've had my dad upset again, NO ONE will help him. Who am I supposed to call who will help him? Who do I turn to? He is constantly going to the toilet still. The doctors have told him that he is a conundrum. Great!!!!

Please, please, please, will someone help us? Why does no one care?

[Didge]

I'm so sorry. I notice that the nurses have not commented on this thread. Why not give them a ring and ask if they can think of anything. Have you tried second opinions? maybe at another hospital. Has he been seen at one of the specialist centres? At least that way you'd get another view on the matter. Thinking of you and wish I could think of something to help!
x

[MSH]

Leila, your father really needs to see the MacMillan nurse. Their expertise is relief of symptoms both physical and psychological in cancerous disease. If diarrhoea is having such an impact on his quality of life it behoves his medical team to try everything to get it settled.

Is he still taking 10 x 40,000 units of Creon with each meal? This is a very high dose, and diarrhoea can be a side effect of Creon. I take 40,000 morning and night and 25,000 at lunchtime. How much codeine is he taking? He could safely take 60mgs four times daily alongside the Loperamide.

[Bookgirl2]

Hi Leila

Sorry have not been on the forum recently (but emailed you separately). Please do push to get a MacMillan nurse. I really wish my mum had been able to see one sooner. When she eventually did see one (just the day before she died) she was really able to help her in a way nobody else had. I'm so sorry - I see how distressed you are and how much you want to help your dad. Thinking of you and keeping my fingers crossed you can get him the help he so desperately needs. Sxx

[Fifi]

MSH - Thank you for replying. He takes 8 40,000 creon, 16 Loperamides a day and codeine. He can't even wet his lips without going to the toilet. He is very thirsty. The minute the slightest thing reaches his stomach, then he is on the toilet. I am so frustrated. He keeps saying that if it wasn't for the diarrhoea, then he wouldn't know he had cancer. he says he just wants to live a bit of life before he dies. It is heartbreaking and I don't know what to do.

Didge - I think it is because they don't know what to suggest. No one does. Everyone just passes him on. His Oncologist has passed him on because he has no idea. The nurses, doctors, everyone have told him that they don't know. People are leaving him to die, and it won't be cancer that kills him. My faith in humans is none existent.

Bookgirl - Thank you. Emailed you back on Sunday.

[MSH]

The advantage of having MacMillan nurse involvement is that they work closely with the Hospice medical teams. If there are any really intractable problems they can generally be consulted. At least that was how it worked in Northumberland.

[Fifi]

He said he will ask for Macmillan. Right now though, we just need his diarrhoea sorting. 5 months is far too long.

[Fifi]

Dad saw Gastroenterologist today. He has got to for a camera up his bottom. The consultant asked my dad if he would be able to handle it, as the day before he has to have something which will cause ' severe diarrhoea'. He already goes 40 times a day, so his insides are well empty, so I hope it won't be too more severe for him. I don't know what they can see up there, that they couldn't see with a camera down his throat.

[jay]

thinking of you and your dad fifi
Jayne
x

[Fifi]

Thank you x