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Fifi

Re: Wish someone would help him

Postby Fifi » Sun Jun 01, 2014 1:50 pm

I am with my dad at the moment and he's asked me a few things that I don't know the answer to. I wondered if someone could answer them for me please.

He said he has asked for a Macmillan nurse, but has been told that they don't flush PICC lines? I don think this is true, is it?

Also, he is missing alcohol very much. He has tried lager and stout and they both go straight through him. Last night he tried Gin and has got on very well with it. He hasn't been to the toilet since 8pm last night and doesn't feel he needs to. Is it ok for him to be drinking alcohol on chemo break weeks? He said he won't have it when he's had chemo, because he's too poorly to. But he wants it on break weeks. Because he got on with gin, he's bought another bottle.

He's also thinking about cutting back on medications, apart from Creon. He said taking 15 loperamide, 6 sachets of questran and 8 codeine a day can't be doing very good. He said all those pills in one day could be giving him diarrhoea. He asked me what I thought. I told him not to stop his creon but it's not my decision on everything else. I guess he's in a position where he can experiment. Does anyone have any views on this please?

Thank you

Leila xx

Slewis7313
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Joined: Sat Dec 08, 2012 8:48 pm

Re: Wish someone would help him

Postby Slewis7313 » Sun Jun 01, 2014 3:06 pm

I'll answer the bits I can Leila.... Not sure about Macmillan and PICC lines, but the District Nurse should be able to do this for you?

Rightly or wrongly, as far as a drink goes, I have simply have had the odd one when I fancy it (I know I am not alone here!), though whilst actually on chemo I seem to lose the taste. I have had to drink the odd wine as Lager can go straight through as your Dad has discovered.

Finally, I would guess your Dad is the best judge of how to balance the tablets as only he can feel the effect of any changes on his body. I would suggest no big changes at any one time and give the body a few days to adjust / react.

Good luck!

Steve
X

Fifi

Re: Wish someone would help him

Postby Fifi » Sun Jun 01, 2014 3:37 pm

Thanks Steve.

He has the district nurse come round, but he doesn't like them because they always worry about flushing it and it worries him. I said a Macmillan nurse would do it, but he's been told not.

He has decided to cut down on pills, rather than altogether. His stomach is rumbling now, so he'll be going soon. First time today though, which is good.

Hope you don't mind but I always read your posts to him. He always asks how you are. Although he never remembers your name. He says " how's that bloke off google doing!"

xx

Cathy
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Re: Wish someone would help him

Postby Cathy » Sun Jun 01, 2014 10:49 pm

Hi Leila

Again, no expert but I wouldn't be surprised if Macmillans didn't flush Picc lines but the DNs will and tbh, v easy to do.

As for alcohol, my opinion, it he fancies it and can stomach it, why not? Jonathan was told, when diagnosed, eat and drink what he fancied, and he did. I know he was "lucky" as he had a good appetite but we often (as documented on this forum) used to pop to the pub on the way home from chemo. I'm not saying I recommend that from a dieticians or anyone else's point of view but that's what we did, he enjoyed it and it added to his quality of life... both our qualities of life.

As for experimenting... I think he could do, as Steve says, but maybe he just tell his GP or oncologist beforehands he wants to.

Hope that helps....

Cathy xxx

PCUK Nurse Jeni
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Re: Wish someone would help him

Postby PCUK Nurse Jeni » Mon Jun 02, 2014 11:30 am

Hi Leila,

No, the Macmillan nurses will not flush PICC lines.

This will be the job of the District Nurses, who will be trained how to do this, even though they may seem a bit "nervous". This is simply because they won't see a lot of these on a day to day basis, but they are more than capable of flushing his line.

Macmillan nurses are not really "clinical" in the sense of flushing lines,doing dressings etc...More supportive, assessing symptoms, medications etc....

Kind regards,

Jeni.

Fifi

Re: Wish someone would help him

Postby Fifi » Mon Jun 02, 2014 7:09 pm

Cathy, he has a huge taste for alcohol and he's grabbed it with all his might. It worries me, but I can't complain, as quality of life is all I want for him.

Jeni, Thanks, he already had a district nurse, just doesn't like them. The last one asked him what she should do. He's not phoned them again since!

PCUK Nurse Jeni
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Joined: Mon Jun 14, 2010 1:30 pm

Re: Wish someone would help him

Postby PCUK Nurse Jeni » Tue Jun 03, 2014 11:54 am

Hi Leila,

As long as his PICC gets flushed once a week, whether at the hospital when he has chemo, or by district nurses, then that is fine.

He should not leave it for more than a week, as they are so tiny, they can block easily.

Jeni.

Fifi

Re: Wish someone would help him

Postby Fifi » Sat Jun 07, 2014 7:31 pm

Been a roller-coaster week.

He did really well last weekend. He did a proper stool and we thought we had turned a corner. Sadly, it was a one off. He has decided to cut his pills considerably. He is still taking creon, and hasn't cut that at all. He has stopped codeine and questran, and is only taking up to 3 loperamide a day, instead of 15. I was worried he would take a bad turn, but it has made no difference. There is no difference whether he takes the full amount of these pills, or little or none of them.

Thursday he was heartbreakingly down. He said if the gastroenterologist doesn't help him this time, he will stop the chemo and die, as he's got no life. I cannot describe to you, just how much this cuts into my heart.

I went over to my dads Thursday and I stayed the night, as we had a early appointment with gastroenterologist. He was weighed, and he is 9stone 4. The biopsy results were all clear. His stool tests were all clear, apart from the enzyme one, and he said that obviously that was expected. He said to stop the questran and they try Octreotide injections. I actually asked for these back in April, and nothing come of it......again! I had to call my dads trial nurse to see if Octreotide clashed with the trial drug and it doesn't. I called the gastroenterologist back and let him know, hopefully to get the ball rolling sooner. We are still waiting for the breathe test as well! He also prescribed some vitamins to help build him up. It wasn't fortisip, I couldn't read the name, and Boots don't have them. When we finally get them, I will update.

Dad very down again today, this really does knock it out of him. Very horrible to think what he must be going through, and what goes through his mind.

xx

Fifi

Re: Wish someone would help him

Postby Fifi » Thu Jun 19, 2014 6:00 pm

Well, my dad had the Octreotide injection and was told to still take his loperamide and codeine as normal. Has the injection done anything? NO.
He is now 8 stone 12.

Fifi

Re: Wish someone would help him

Postby Fifi » Sun Jun 22, 2014 12:01 pm

We saw the Gastroenterologist last Friday. He has started my dad on antibiotics, to treat small intestinal bacterial overgrowth. Was given two lots, but one of them he can't have because it interferes with the trial he is on.

Today is bad. He has lost half a stone since friday. He weighs 8 stone 6. I have called the hospital where he has chemo and they are sending a ambulance for him. They will only put him on a drip and get hydrated. But it is better than nothing. I will call the Gastrointerologist tomorrow ( who is at a different hospital ), and see if he can possibly do something, and quicker than the 2 week time scale that we see him now!

sandraW
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Joined: Thu Oct 31, 2013 5:38 pm

Re: Wish someone would help him

Postby sandraW » Sun Jun 22, 2014 1:17 pm

Oh Leila, you're poor Dad, I hope he feels better when he gets rehydrated, lets hope that while he is in hospital someone can come up with some answers for you both. take care sandrax

nikkis
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Re: Wish someone would help him

Postby nikkis » Sun Jun 22, 2014 5:55 pm

Hi Leila,
Sorry to hear you dad is so poorly again. We saw a gastroenterologist last week and he felt that Paul's on going problems (diarrhoea, distension and wind+++) may also be caused by bacteria in his gut. He has suggested trying some "super probiotics", the GP has prescribed one called VSL#3, which Paul will be staring tomorrow. He said there is also one you can buy called Symprove. I have looked them up, and they have been used quite a bit by crohn's sufferers, who think they are very helpful, but they can take several weeks to take effect. Just thought it might be worth asking your dad's gastroenterologist about. We hold Paul's man in high regard, so have high hopes!

Nikki

Fifi

Re: Wish someone would help him

Postby Fifi » Sun Jun 22, 2014 6:35 pm

Hi Nikki,

Nice to hear from you and pleased Paul is still doing so well.

My dad has just had that actually. The gastrointerologist suggested it a while ago but he can't keep any food in him, so I was never keen. But 2 week ago I gave in and he let him find out for himself. My dad can't keep water in his body for longer than 5 minutes, so nothing else will stay in. He has never ever improved, this weekend is just worse than normal. I'm not going to let him get to 40 times a day before I call a ambulance again.

My dad is in hospital now. They have called me to say he is on a drip and has perked up a bit. They have told him to stop taking the antibiotics and they will get him the breath test in the next few days. He has his CT on Tuesday as well. So at least he won't have travelling to deal with.

Leila xx

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Wish someone would help him

Postby nikkis » Sun Jun 22, 2014 7:12 pm

Dear Leila,

I am sure you dad will feel much better one he is rehydrated. This disease is so relentlessly stressful for everyone involved, try and take care of yourself too,
Nikki

Charney22
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Joined: Tue Dec 31, 2013 6:47 pm

Re: Wish someone would help him

Postby Charney22 » Sun Jun 22, 2014 7:22 pm

I'm sorry to hear your dad is poorly and in hospital,
But hopefully they can finally sort him out,
Keep strong big hugs
Cheryl xx