A forum for family, friends and carers of pancreatic cancer patients

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InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Wish someone would help him

Postby InfoForMum » Mon Jun 23, 2014 3:14 am

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/vi ... rses#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

Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

Re: Wish someone would help him

Postby Nelsmum » Mon Jun 23, 2014 4:00 am

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

Fifi

Re: Wish someone would help him

Postby Fifi » Fri Jun 27, 2014 8:41 am

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.

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Wish someone would help him

Postby Cathy » Fri Jun 27, 2014 4:25 pm

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

Fifi

Re: Wish someone would help him

Postby Fifi » Sat Jun 28, 2014 11:27 pm

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

Fifi

Re: Wish someone would help him

Postby Fifi » Mon Jul 07, 2014 7:24 pm

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

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Wish someone would help him

Postby sandraW » Mon Jul 07, 2014 8:13 pm

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

Fifi

Re: Wish someone would help him

Postby Fifi » Mon Jul 07, 2014 8:37 pm

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

Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

Re: Wish someone would help him

Postby Nelsmum » Mon Jul 07, 2014 11:54 pm

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

Fifi

Re: Wish someone would help him

Postby Fifi » Tue Jul 08, 2014 9:23 pm

Thank you.

Leila x

PCUK Nurse Jeni
Posts: 1101
Joined: Mon Jun 14, 2010 1:30 pm

Re: Wish someone would help him

Postby PCUK Nurse Jeni » Wed Jul 09, 2014 4:07 pm

Wonderful, good news Leila!
This is great indeed - long may it last.

Kind regards,

Jeni.

PCUK Nurse Jeni
Posts: 1101
Joined: Mon Jun 14, 2010 1:30 pm

Re: Wish someone would help him

Postby PCUK Nurse Jeni » Wed Jul 09, 2014 4:07 pm

Wonderful, good news Leila!
This is great indeed - long may it last.

Kind regards,

Jeni.

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

Re: Wish someone would help him

Postby nikkis » Wed Jul 09, 2014 4:49 pm

Really good news Leila. We didn't hear about the cancer being in the lymph nodes either until further down the line, I agree with Sandra that sometimes the doctors feel it is too much to take in at the start,

Best wishes,
Nikki

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Wish someone would help him

Postby Didge » Wed Jul 09, 2014 8:50 pm

Great news, Leila and I agree with others that first it's in the original organ then it gets into lymph nodes either local or distant nodes and from there spreads so it's just the step in between so to speak. So not a new thing to cope with just that you didn't know about it. Really hope your dad continues to improve and hopefully, one day, the diarrhoea will stop! x

LMD
Posts: 120
Joined: Tue Apr 15, 2014 10:06 pm

Re: Wish someone would help him

Postby LMD » Wed Jul 09, 2014 10:18 pm

Hello Leila, just wanted to say hello (as I follow your posts) and thank you for sharing. Pleased to read you have had some good news. (my dad also has PC)
Take care x