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

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Jammydodger
Posts: 4
Joined: Mon Jul 27, 2015 11:05 pm

Learning a lot!

Postby Jammydodger » Tue Jul 28, 2015 10:03 pm

First post, don't really know what to say if know what I am looking for, but sadly I am experiencing pancreatic cancer in our family for the 2nd time. We lost my father in law 10yrs ago and now my father has been diagnosed 6mths ago.

Frustrated isn't the word! Like most, the diagnosis came through eventually after several tests, jaundice, stents, etc . The tumour could not be removed as wrapped around the portal vein, so he had a bypass (not complete whipp les) he also has spot on the peritoneum & small bowel.

I feel like I really don't get the answers. He started chemo, but ending up missing so many as his blood counts etc were not right, he has now just started 5fu. He just doesn't eat & is in lots of pain, however the tumour hasn't spread, it has grown slightly, so it's hard to understand how all of a sudden (last 2 weeks) the pain has increased a lot?

The last 2 weeks he has taken a nose dive, he is really confused, can't remember what meds to take, etc. after an appointment with his consultant, we hope we now have his meds sorted including creon, paracetamol, codeine & liquid morphine. He is like most loosing weight & not really eating & still in pain & discomfort.

It really worries me as He is so confused, I am trying to get a referral now for Macmillan to visit more to see if they can help. Equally will this chemo make him more poorly, is it worth it?

Thanks for listening

I know what comes next & I know how long we have to go, prob 6mths......... But finding it all so frustrating!

Sorry hard to put things into words & just releasing frustrations!

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

Re: Learning a lot!

Postby sandraW » Tue Jul 28, 2015 10:58 pm

Hi Jammy,
Welcome to the place no-one wants to be but where you will get lots of help and support, the nurses Jenni Dianne and Chris can give you invaluable advice, and are so very approachable, give them a ring and I am sure they will be able to give you some ideas to help.
I am sorry to hear about your dad, and also that he is not doing too well at the moment. hopefully the Macmillan nurses can help him, could it be the morphine that is causing the confusion? or perhaps if he is feeling rotten he just can't be bothered.
As for those answers, I don't know wether there really are any answers, everyone is so different in there response to medication, chemotherapy, and progression of disease, it is so difficult to say what and when things will happen.
As for frustration!!! we all completely understand that word, we have all struggled with that in many ways, I hope things improve soon and keep us up to date with how your dad is doing, take care sandrax

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

Re: Learning a lot!

Postby Didge » Tue Jul 28, 2015 11:28 pm

Confusion could be morphine which unfortunately us v common but also dehydration or infection although I assume he is monitored for those. I find it really hard to cope with too as it feels as if you've already lost the person in a way. I do hope things go as well as they can. Some people seem to suffer with a lot of pain as my partner is, but others have no pain. Anyway venting frustration is what we are here for!

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

Re: Learning a lot!

Postby LMD » Wed Jul 29, 2015 10:06 am

Hi Jammy
So sorry to read that your family are having to face pancreatic cancer again. Thinking of you and your Dad and hoping that the pain and confusion your Dad is experiencing can be brought under control and your Dad can feel better. Remember to look after yourself too and come here and post/release frustrations whenever you need to xxx

Jammydodger
Posts: 4
Joined: Mon Jul 27, 2015 11:05 pm

Re: Learning a lot!

Postby Jammydodger » Thu Aug 13, 2015 10:44 pm

Hi

It's been a rocky couple weeks as dad's health has deteriorated. He has just spent a week in hospital, dehydrated & urine infection, confusion. Medication has been addressed/changed, all to help.
His chemo has been withdrawn as he just isn't well enough to cope with it. His ca19.9 has increased 6 fold in the last few weeks & liver function results are high now too, so it's attacking that, all too real.
We have been prepared for weeks left now opposed to months.
Some days are good, but in all he is struggling to manage pain, confused & tired with little concentration. It's hard as I know now is the time to get him out, see what he can & probably see people for the last tine as I am sure confusion & tiredness will increase over the next few weeks, but he just doesn't want to.
He thinks he needs to just get better, which I don't think he will.
It's hard as are getting the help he needs, things to make his life better, but reality is, him & mum just cannot remember & struggling, it's a fine line not interfering too much.
He wants to be at home, but worried I may not be able to fulfil his request.
It's so sad.