Advice please

[LynnC]

Iain was diagnosed with inoperable pancretaic cancer in November this year. After a really traumatic time at xx Hospital where they finally managed to get a stent in his bile duct we got him home. Unfortunately three days later he was vomiting becuase his bowel obstructed! The surgeon at our local hospital has been brilliant and performed an adapted bypass, because he was not able to attach the bowel to the gall bladder because it was gangrenous! This was a suprise as we did not realise the stent had blocked off too!! He had the surgery on christmas eve and despite being really ill with septicaemia is doing really well now, I think. He desperately wants to start his chemo and try and hold this back but we realise he has to get better from this surgery.

Has anyone any experience of this surgery? He wants to hear from someone with experience of it as he found when he was in xx that talking to people who had been in a similar position helped. In particular he wants to know how quickly he will be able to eat properly. The surgeon inserted a jejunal PEG feed which is giving him 2000 calories a day to help keep his weight up as he must he must have lost at least 3 and a half stone by now, but this isnt really enough and he knows that. Apart from the fact that it gives him diarrheoa! Not fun at all. I know that everyone is different and this cancer affects everyone differently but it would really help to know there are others who have been through this particular bit.

I have been reading a lot of postings over the last few weeks and have really found your encouragement and the sharing of information and experiences really helpful. I hope I can offer encouragement and advice to others too eventually and thank you.

Lynn

[Nardobd]

Hi Lynn

I don't have any direct experience with Iain's type of problem but just wanted to say that my thoughts are with you both - Iain really seems to have had a traumatic time of it and I hope he's well on the road to recovery soon.

Nicki

[Ellie]

Hi Lyn

So very sorry to read of your situation. It makes it all that more worse with everything happening around Christmas time. You must have been through the mill worrying about your husband.

I'm afraid I can't help you either - I don't recall anyone on here in the last 18 months having the same problems but maybe you can post on another forum (Macmillan?) for specific help with symptoms and treatments etc. You will certainly get emotional support from us all here and it does help just to "talk" and know that a lot of us are going through similar, if not exactly the same, situation.

I hope you can find the advice you need and please let us know how you are getting on.

Best wishes

Ellie

x

[Juliana]

Hi Lynn,

I haven't had the same op, but did have the whipples op and did have a jej-peg for a while and got fed a nutritional milky like substance - which also caused the runs. All I can suggest is that when they make the mix to feed him (although usually its in a sealed bag to avoid bacteria etc) is to try and add CREON digestive enzymes to it. Iain could eat steak every day and still not put weight on if his pancreas is not producing the enzymes....this is very important and I would get onto it straight away.

Can Iain eat or is he nil-by-mouth?

After my op I was not allowed food for 9 days and I felt that instead of getting stronger, I was getting weaker. I really had to push to be allowed food, and when they finally agreed I felt such an improvement not just physically but mentally.

Does his bile duct still drain into the bowel? Bile is also important for food digestion, when I had mine draining outside of the body for a short while a specialist asked if I could try and drink some of it with meals to help with the digestion. I do not recommend it as it caused vomiting...! There are supplements that have similar qualities to bile, it may be worth investigating if his bile is not being used.

Usually after any internal operation they would wait about 8weeks before considering chemo, for any stitching to heal and healthy scar tissue to form etc.

I hope this has been some help to you, it can feel lonely when you can't find someone with exact or similar problems/symptoms to compare to.

All I can say is hang on in there - if Iain has an appetite - push for food - not hospital stuff, you steam him some veggies, poach him some white fish in milk - light and easy to digest stuff.

Keep us updated, and feel free to add more info and ask more questions - you will always get a reply of some sort!

Kind regards,

Juliana

[LilyG]

Hi,

Like others, I have no experience of the specific operation but agree that starting chemo differs by person and how they recover from surgery.

My husband tried unsuccessfully to have his pancreas and spleen removed on 12th August - it was still a 4 hour op that resulted in him being opened and closed up. He started GemCap on 10th September - so 4 weeks later which I was amazed at.

Good luck.

L