Update on my Dad

[rachelqt]

Hi All,

Just as my Dad seemed to be doing so well, things have now went downhill and were trying to get our heads around everything.

6 Weeks ago we got dads results which were positive as things looked stable although there was a spot on his liver, but they were not too concerned about it. We also reported about my dads diarrhea but they told us they did not think Creon should be used yet as it was not offensive enough and the stools were flushing ok. We were told to go and enjoy the summer until the next scan.

So now in the last 6 weeks, dad has had one bad incident of diarrhea after a heavy meal out (steak). So we phoned the local doctor who gave us Micro Creon to be used on his main meal every other day. We actually used a little everyday on his meal and his mildish diarrhea seemed to clear but then went the other way and he seemed to be constipated for a few days. His appetite started to decrease until he was eating only in the morning and then started to vomit all through the night. He said he had no pain only a discomfort up his side like indigestion. He found a short relief after vomiting only for it to build up again. He has now lost over a stone in weight in 6 weeks. He still has very good energy levels though.

He is now in hospital from yesterday. They feel he has a blockage somewhere. He has a tube down through his nose and into his stomach which is draining out the build up of fluid, bile i think as its greenish. He found instant relief from this. He is also on fluids as he was dehydrated. He was suppose to go for a scan today only his kidney function is slightly down, so they are hopeful for the morning. There is talk of placing another stent.

Just afraid now that the tumor has spread or got bigger somewhere else to cause this blockage?? Anybody any experience of anything similar?

Thanks Rachel Xxx

[laura]

hello rachel, sorry to read of the blip with dad, what a bummer, if its any consolation bri had a 2nd stent only a few weeks after his first one, they can get blocked, i dont understand your drs views about the creon, i thought poo,the colour, floating, grease etc was an indication of a problem, not an indication for the need, or not, of creon!,

mind im no specialist, my understanding, gleaned from the proffessionals, was that problems with the pancreas and involving the digestion of food required creon, CONSTANTLY.

its aim is to be a REPLACEMENT for the pancreas's work, which it can no longer do,! have you tried questioning the drs on this, its difficult i know but perhaps their knowledge is not too great, i know when bri was in hosp one time, no one including drs knew about it or HOW to take them!!!!

can you go armed with some info from this site, am sure jeni would do that for you [ sorry jeni] really hope you see an improvment soon love, take care, love to dad and you laura xx

[rachelqt]

Hi Laura,

Yes think your totally right about some doctors having a lack of knowledge about Creon. Dads Oncoloigst just seemed to think his pancreas was working quite well without it?

Dad never got a scan today, I hope it goes ahead in the morning. The doctors at the hospital feel this situation has nothing to do with the creon (me and mum were thinking it maybe did not agree with him or we gave him too much). They also dont think that his stent is blocked. I have a feeling it may be to do with the small intestine/bowel area. They had him off his drip today and just hooked it back up for tonight. They also have him measuring his fluids that he is drinking, think they want to see if whats going in is coming back out. He still is eating very little.

All so confusing, just need answers now to move forward. My head is sore now just thinking about different possibilities, feel like chopping my head off..lol

Thanks for your kind words Laura, hope you and Bri are well

Chat soon..Rachel xx

[PCUK Nurse Jeni]

Hi Rachel,

Creon micro every other day is ineffective if a person has pancreatic enzyme insufficiency. As Laura correctly said, it needs to be taken all the time, with every morsel of food or milky drinks. There is only one way to diagnose it properly - a faecal elastase stool test. There will be no debate then about whether he needs it or not.

You cannot overdose on it, as it is an enzyme which is normally produced in much larger amounts by the pancreas. Also unlikely that it would cause stomach upset. If he has a NG tube draining, then a blockage is very likely.

Feel free to email me at support@pancreaticcancer.org.uk if you have complex medical questions like this again as Laura said. Only too happy to help.

Jeni.

[rachelqt]

Thanks Jeni for the reply.

The Creon was working very well as he was having more normal stools. My mum and I actually went against the doctors advise of using it only every other meal, we decided to go with the great advise about the usage of it on this forum. Its just unfortunate that he started to experience these symtoms a week later.

This morning Dad had an X-Ray and a CT Scan. He was then told it was a definate blockage and that he will be sent for a Scope test for further investigation in the morning.

So tomorrow is another day and hopefully we get closer to finding out and sorting it out. X

[laura]

hi rachel, glad things are moving along for dad, am sure it doesnt seem fast enough! await, with you, the results, sleep well all of you, as you say tomorrow is another day, lets hope its a good one,

love laura xx

[louiepc]

Hi Rachel

Just seen your post, I'm sorry your Dad has had a set back.

Oh how worrying for you all, and frustrating when the doctors obviously don't understand that the medication your Dad needs. Is there a specialist hospital/doctor in your area that knows more about PC and drug usage/effects than the ones who are treating him at the moment? I know they are few and far between, but worth asking.

I must admit, I found this site invaluable for going armed with information I really felt that it helped Mum.

I hope tomorrow works out well for you all. It is so worrying the not knowing, try and get some rest and I hope and pray that whatever is causing the blockage can be dealt with swiftly.

Lots of love.

louie x

[charney]

Rachel

I am so sorry to hear about your dads set back, he was doing so well.

It is such a worrying time when these set backs happen. I do so hope they get

it sorted quickly and he is up and about soon. xx

cheryl

[rachelqt]

After nearly a week of nerves and sleepless nights, today the multi disciplinary team got together to discuss my dads case and then was followed with a meeting with us.

Thankfully it turned out more positive than what we expected. Dad has a blockage in the duodenum, caused by his tumor getting bigger but not by a second tumor which they first suspected. They could not put a stent in as it was too tight, although they feel the best option is for a gastic bypass to give him a better quality of life and hopefully stop vomiting and start eating again.

He also has a blockage in his stent which has caused an infection, so he is on antibotics until they unblock it.

The plan is to move him to a different hospital on Sunday, for procedure on Monday to unblock his stent and then on Thurs/Fri get his gastric bypass.

Were grateful to be given this plan of action to help sort out this problem. The staff and team have been wonderful looking after him.

Now just hope that everything will run smoothly and we get him home soon.

Hope everyone is well...Rachel xx

[Ella50]

XXX

love Ella xx

[laura]

hi rachel, been wondering how dad was, so pleased you have a plan of action, makes everyone feel better, fingers and everything else crossed for a speedy intervention, love to your dad and strength and love to you, laura xx

ps we are doing fine, going to get our passports renewed, bri wants to drive [?] around spain perhaps nx feb, also would like to go to gibralter, his mother was born there, and has never been to ireland so lots to think about,!!

keep usposted re dad wont you?

[rachelqt]

Hi,

Dad is for his Operation tomorrow, I pray that it goes well and they can resolve this blockage. Stent was unblocked on Monday. They have put a feeding tube through his neck on wednesday, which is attached to a vein and providing nurishment into his bloodstream. He has so many tubes now and oxygen, it seems so frightening!

Will keep you posted x

Laura - im so glad things are still stable for Bri, enjoy the goodtimes! If you ever venture to Ireland you will have to look me up!

Rcahel Xx

[laura]

dear rachel, will be thinking about your dad, and you, tomorrow, lets hope for a speedy recovery, tubes do look awful, but all there for a reason, stay strong, love laura xx

[charney]

Hi Rachel

I have been wondering how your dad is, sending my best wished for today and I

hope he is feeling brighter soon.xx

[louiepc]

Hi Rachel

Lots of love and best wishes being sent to you, your family and of course and your Dad. I hope and pray that the operation has been a success.

The tubes do look so scary, I remember when my Dad had his heart operation, goodness me, there was about 15 tubes in at one point, but they are doing him good, and getting him through this tricky time.

Lots of love, looking forward to hearing your good news very soon.

louie xxx

[rachelqt]

Hi,

Dad did not get his operation today, he took a high temp and shakes an hour before he was due to go down. He is on antibotics with the hope to see if he will be stable in the next 24hrs. He seems so sick tonight and has had pain across his stomach.

My heart feels like its in bits, feel so so sorry for him, wish i could do something.

He said to me tonight "rachel i cant understand whats happening to my body.

Hope he pulls out of this

Starting to feel really scared

Thanks for all your support xxx

[louiepc]

Oh Rachel

I'm so sorry that your Dad is so poorly, just when there seems a light at the end of the tunnel, it's taken away again. You must be feeling so desperate. I hope that the antibiotics kick in quickly and he starts to feel better very soon.

lots of love.

louie xxx

[laura]

dear rachel, so very sorry that things have been held up for dad, awful i know when you cant actually do something to help, tho im sure just being there for dad must help him, can understand how low u must be feeling, always such a rollercoaster of emotions, wait to hear from you, hopefully with positive news! sending you lots of love and strength, laura xx

[ali40]

Thinking of you Rachel and hope that you get some positive news soon.

It's so hard feeling so helpless.

Alison. x

[rachelqt]

Im pleased to say that Dad got his operation yesterday and it seems to have went well!

Although time will be the true indicater of this.

They managed to control his temperature over night and thankfully took him down yesterday lunch time. It was hard on friday as he had built up his hopes to get this done and was totally devastated when he started to feel unwell just an hour before he was due to go to theatre.

He is now in good spirits that it is over him, even joking about his zimmer frame that awaits him in the next day or two to help him back on his feet. He amazes me how brave he has been through out his illness.

Fingers crossed this operation will give him a better quality of life.

Takecare everyone...Rachel xx

[louiepc]

I'm very pleased that he's had his op, finger's crossed he will feel much better soon.

Lots of love.

louie xxx

[laura]

oh rachel! wonderful, thats the first step to better things eh? best wishes to you all,

love laura xx

[suef]

Dear Rachel,

That is wonderful news! I hope they will get him walking soon, zimmer frame or not, it does you a lot of good to be able to move, even just a step at a time, with all the tubes on stands trailing along behind him.

Thinking of you!

SueF (Whipple Feb 2010)

[rachelqt]

Hi everyone,

Have not been on here for a while. Its been a tough summer with dad in and out of hospital, trying to make the summer as normal as I can for my girls and my best friends dad passed away after a 10wk diagnose of esophagus cancer. Things have settled now thankfully.

Dad was in hospital for 5wks between vomiting, an infection and then the operation. Got home took another infection, back to hospital for a week and now home just recently. He is quite tired but is eating quite well now, asking for things to eat which is a good sign (nothing worse than feeling like a pest trying to get him to eat). He took a very small walk yesterday and he seem to be returning to his old self in terms of having an interest in watching tv, reading and having conversations and a laugh! He gets very low when he goes into hospital, the last time he started to cry when the doctor told him he had to go in. Think its because of his bad experience when he was told he only had days to live, would not blame him!

Next step now is to book an appointment with the oncolgist when he is feeling up to it to discuss what is to happen next, to go back on treatment or carry on as we are?

Laura - I see Bri has his review next week, best of luck with it and will keep you both in my thoughts and prayers

Hope everyone is well as can be, my heart goes out to everyone who has lost a loved one recently

Rachel xx

[laura]

hi there rachel, gosh you have had a difficult few weeks, awful trying to juggle so many things, people and emotions, i know have had a rocky couple of weeks, flare up of fibromyalgia, sorting daughters house out to put on market, she rents off us, but we need to get rid of the worry of it, bri fine, very tired and totally absorbed with refurbishing old tools etc, his love!, feel like saying " hi, i'm here" then feeling guilty bout being selfish. whilst hes so occupied and happy, oh bummer, feelings eh, sorry bout moaning, i know how lucky we are,

am delighted dads home and showing some progress, he sounds like a real strong guy, and hes got your love to help him along. long may it continue rachel,

will update nx week after bris consultation.

till then love to all on here and to you rachel, your dad and family, laura xxxx