Wish someone would help him

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

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

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

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

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.

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!

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.

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

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.

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!

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

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

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

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

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

Hi Fifi,

I don't know if you still need an answer about the flushing PICC line question, but Macmillan will never do it as they support/co-ordinate care, but don't practically nurse (this was the definitive line in our area and assumed it was the national one) and district nursing co-ordinators in different areas can make different decisions about whether their staff are trained to deal with any IV lines at all.

I describe my battle when I found out our little patch of Norfolk won't help compared to DNs who will help 20 miles up the road in my main thread. http://forum.pancreaticcancer.org.uk/viewtopic.php?f=28&t=1168&p=9544&hilit=district+nurses#p9544

The only solution for us, because our DNs said it was to complex and risky to be trained, was to get trained myself. I dealt with all of Mum's central line care and it was a doddle. Just some basic things to remember about staying sterile.

If you're not comfy helping, one thing you can try is writing to your MP after demanding the bottom line about the situ from your local district nursing co-ordinator. Getting your GP on board is very helpful too. Do you feel like a fight - doubt it and am very sorry you're facing practical hurdles at a time like this.

Hope he and you have an easier ride soon.

Sarah

XXX

I hope they can find out what is causing your Dad's problems now he is in hospital, best wishes.

Jane C

Dad came out of hospital yesterday. Still exactly the same, the doctors told him he is a 'enigma'. They don't have answers for anything.

They have given him 2 steroids for each morning to try to help him put weight on. He says he's just more hungry than normal, which makes him eat more, which makes him go to the toilet more. Losing battle.

He had a CT scan on Tuesday while he was in there, they have his results but no one gave them to him. So, I will be ringing round this morning.

Hi Leila

I expect he will get results next time he sees his oncologist. Is there a meeting lined up now he is out of hospital?

I'm pleased that he has been discharged but disappointed they haven't got to the bottom of his diahorea yet. I'm afraid I don't have enough expeerience to offer any good advice other than keep plugging away.

Cathy xxx

Yes he will Cathy, and we have the appointment ready. It is just that he was told he would get them Thursday and he hasn't. Now he thinks it is bad news and they don't want to tell him. I called the hospital Friday and they said they weren't back. I will keep calling every day until they tell us. It has made him anxious, and I am sick of people upsetting him.

( will email you back tomorrow night)

Leila xx

Well, we got Dads CT results. Good news again. Cancer has shrunk off his liver and no change on his pancreas. They did say the cancer on his lymph nodes have shrunk as well, they were 9mm and they are now 6mm. The last bit was a shock as I didn't even know he had it on his lymph nodes. It was like good news and a slap in the face all in one.

He has been tested on his tumour markers today, hoping for good news there as well. Since February it has dropped 1,844 and is only 719 now, so hoping for another drop.

As fir the diarrhoea, well, no change there, surprisingly. They are going to double his octreotide injection on wednesday, and if that doesn't work then they will triple it next month. Got to try and reschedule the breath test appointment now the antibiotic course has finished. His weight hasn't changed, is still 9 stone. At least he has going down anymore.

Leila xx

Hi Leila, some more good news for you, and at least your dad hasn't lost any more weight, the old Furry Fox does seems to do a good job, reduction and tumour markers down as well. I do think that the oncologists don't want to overwhelm us when they give us bad news, so they might not have specifically mentioned the lymph nodes, just mentioned spread, or as you would have been so upset and worked up you perhaps didn't take it all in, I think it has to be in the lymph nodes to spread to another organ.

Hope doubling his injection works for him, finally, at least they seem to be trying to get to the bottom of it (sorry no pun intended)hope he responds soon take care sandrax

Hi Sandra

He is having Gemcitibine and possible trial 'Maestro' drug. Though they think he is having the real drug, but obviously, no one knows.

I think you are right with the lymph nodes, someone else has said the same and I have searched it, and it seems to be that way. It just threw me a little.

I hope the injection works. As we were leaving on Friday, the Gastroenterologist told him he was a mystery.

Leila xx

So glad you and your Dad finally have some good news! And at least his weight has stabilised.

Jane C

Thank you.

Leila x