Wish someone would help him

I am so worried about my dad. He has just been on the phone to me, and he is incredibly distraught.

He said he has been to the toilet with bad diarrhoea at least 30 times today. He said sometimes, he didn't even make it back to the room before he had to go back. He said he has had 10, 40,000 creon with each meal, and one of those was a cup of tea and a biscuit!

He said the diarrhoea is killing him. He said he can't eat, can't drink, can't leave the house, so what is the point in trying to fight. He said cancer is nothing, the diarrhoea is killing him. He said he is fed up and can't go on like this. He said no one can help him, and no one is trying to. He said all people care about is his chemotherapy. He said he has no strength, and can't even be bothered to talk to me.

It is distressing to hear him like this. What can I do? Who can I call? How can I help?

Creon has never worked for him. There must be something else wrong with him. I just want him to have some quality of life, he has none. He has nothing at all.

So sorry to hear your dad is still suffering. Have you got Macmillan on board. Call your cancer help line/emergency numbers, he will be dehydrated if hes lots of diarrhoea You need answers but being weekend you are struggling.

Hope you get this sorted asap xxx

Thank you for replying.

No Macmillan. His district nurse says he is too fit for one, even though he told her he wanted one. The nurse he has isn't very good, she doesn't even know how to flush his PICC line!

I've just called him again and he is in bed. He is still saying what he was saying before. I am going to call his oncologist Monday morning. What numbers do you mean? That I know of, he doesn't have any.

xx

Hi Fifi,

Sorry your poor Dad is still suffering with diarrhoea, I think the numbers JT is talking about are the telephone numbers your Dad should have been given to contact the nurses at

the hospital where he is having his chemo. In our case after 6 pm and weekends we ring the telephone number for the main hospital and ask for a bleep number, the doctor then either speaks to you or rings you back, you explain the symptoms and they either give you advice, or ask you to come in, or if its the kind of emergency (eg chest pain ) they

would tell you to go to A&E. I hope your Dad improves soon he really is having a torrid time of it.take care sandrax

Ok, thank you Sandra. I will call my dad in the morning and I will try to get him to speak to someone.

I'm just worried that he is getting too fed up with all this.

x

He said no one is interested in anything. No one is bothered about trying to help with the diarrhoea. He said everyone just keeps saying to take more creon, and no one will accept that something else is wrong.

He has no quality of life. This is disgusting, it is his only symptom of cancer. He has no pain. He is eating incredibly well, in fact more than I can eat. He is wanting to leave the house but he can"t. The only way he doesn't get diarrhoea is when his stomach is empty. He cannot go on like this. He is 10 stone. He cannot starve himself just so he doesn't get diarrhoea. But 30 times in a day is not right.

This sounds to be a real nightmare for you Dad Fifi. Not sure if you have discussed this on another thread but I was given a supply of Imodium (Loperamide) tablets when on chemo to take in addition to the CREONS in case I developed diarrhea. Luckily, I did not suffer at that time but currently do because of surgery and the tablets do work. Has your Dad been given any tablets specifically for the diarrhea? Can your Dad try these until he can get someone to sort it out? You can get anti diarrhea tablets cross the counter at the chemists if needed.

Not much help I'm afraid Fifi, but I know diarrhea can really get you down if not controlled.

Good luck

Steve

X

Thank you for replying Steve.

He is taking 8 Loperamide's a day, as well as Codeine to try and stop it. Absolutely nothing is working for him. He has been tested recently for VIpoma in case that is a cause but we don't get the results for another few week, and he has been told that it is unlikely.

It is upsetting because he is doing incredibly well apart from this. He is beginning to lose fight.

x

Please somebody help me. My dad has just called me and told me I need to do something as he is dying fast. He said he has lost a stone in the last 3 days and that he's dying fast. That's all he kept saying to me. He's dying fast. Please help me.

I've called the hospital. They are sending a ambulance for him.

I haven't been around today but was just coming on to say - call an ambulance!

Hope he getting looked after properly in hospital fifi.

xxx

He came out of hospital last Wednesday. They haven't stopped it. They don't know how.

They gave him 16 Loperamide's on the Monday and that was the only day he has had for nearly 5 months, where he never went to the toilet. They then stopped it, told him they were putting back to 8 a day as 16 was too dangerous.

Back to square one!

They then said they were going to give him Octreotide injections. Then they said they weren't. Then they said they would up his Loperamide's to 12 a day.

It is better than 40 times a day, but once the chemo starts, it will be back to 40 times a day again.

How much more weight does he have to lose before they will do something?

Sorry to hear of your dad's ongoing problems. Don't know what to say really. Is he not dehydrated too? Sounds like tough times. I hope you get some help asap.

Julia x

Hi Leila

When are his test results through? I know they were going to take a little while but it did sound like what the support nurses here thought might be the issue probably might be. Hopefully you should get an answer soon.

The nurses will be back here tomorrow too if you need to talk to them.

Fingers crossed as always..

Cathy xxx

This must be so frightening for both your Dad and you. I hope they

can resolve his ongoing problem.

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

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.

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

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

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

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?

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

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.

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

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.