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New Diagnosis, First Oncologist Meeting tomorrow


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Ok so this afternoon Phil had his first Creon tablet, one, with a light lunch/snack of avocado and something else not very substantial. This evening he's having horrible phlegm/acid reflux and is convinced it's the Creon. I think he'd pinned his hopes it would stop his indigestion, not realising it's about nutrient absorption. I've tried to explain he's had the acid reflux before, when he hadn't taken Creon but he's quite down about it. Mind you this is only his first step on any kind of treatment apart from Oramorph for pain relief and Omeprazole for the stomach acid.... so let's hope when he gets his drain (next Thursday, a week tomorrow unless they can bring it forward) he doesn't pin his hopes too rapidly on each step. I'll be with him from Tuesday next week, for about 12 days and am trying to put processes in place to be able to go over at short notice. Hopefully chemo (single agent) will start next week too, though no date as yet.

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Hi Fiona,


So sorry Dad is still having issues and has lost faith in the creon so early but it is an absolute necessity, let's hope the stent does its work real soon. I dont know what strength the creon is but one doesn't sound enough. Doctors notoriously under prescribe so check with nurses on here. You can't actually over dose. He needs to hide them if he is in hospital because ignorant nurses take them off patients and deal them out on the drug run which is hopeless as they must be with meals and snacks.


It's so difficult when they won't bother then doctor but tweaking drugs is part of a rapidly changing disease ( the rollercoaster) it also sounds like he needs more help with the reflux until he gets his stent. There are more/different drugs available to help.


M x

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Thanks Marmalade. No stent (does that mean drain?) yet - a whole week to wait unless they can bring it forward. Will try to find out what strength creon. Not in hospital, at home - but I'm in Spain, he's in the UK (working to remedy that) ... nb he's my other half, not my Dad, and we're hoping we can get married before PC gets the better of him (wish they had an emoji for a laugh/cry at the same time!

Thanks for your input, Marmalade - this forum really is a godsend in a nightmare.

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Of the many other worries I have, the fact he's barely eating (maybe a bowl of cereal and half an avocado in a day on a good day) really frightens me because how can his body even survive, let alone fight..... any suggestions other than the obvious 'little sips, little bits, little and often' which he finds often results in acid reflux or major indigestion & hiccups ??

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Hi you need to contact his GP today and ask for supplements to be prescribed......there is lots of different ones ...types....and flavours. He needs to have sustenance of some sort if he is not eating. Fi can you not employ someone from a care agency to go in twice or three times a day solely to ensure he is motivated to take a supplement and oversee his medication....that would also give you peace of mind that someone is there to notice any great changes in his condition that day. I know Pete would not have the energy or the insight into his condition to know when these changes are taking place. Oh Fi I feel so sorry for the position you are in ....would it not be better if you arranged to move back to uk for say six or eight weeks , you could enrol your son temporary in a school and you would be here to manage Phils illness. Also you will not be making good decisions at this time with regards to uprooting you and your son permantly. You may feel differently about what to do later on. I think Phil needs you now and maybe it's also what your son needs at this time is close contact with his Dad that may be one of he reasons he is a stroppy teenager right now. He must feel as though his Dad is slipping away from him and his imagination may be running riot because he is not able to be with him. Fi these are only my thoughts please don't think I am being pushy...but we are all going through this hell just now and sometimes I know I cannot see the woods from the trees until I consider ideas that are out there but stress and worry stop me seeing them.....love to the three of you

Elaine

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Hi Fiona,


Many many apologies for the errors. Meant drain and wrote stent, and I did know he was your partner, don't know why I wrote Dad, must be the fog I live in these days.


It's very worrying to be away from someone you love and heartbreaking if they are poorly too. I think you are incredibly courageous and doing your very best to care for your partner and your son. I think Elaine has a good idea with suggesting carers to go in, it would be good for his morale to have even a brief chat and a smiling face and might be good if they could make him a snack. Any food will do at this stage, anything at all he fancies, my husband lived on weetabix mainly because the digestive issues and pain built up during the day so breakfast was the one meal he could still enjoy. Elaine is also right about a prescription for some supplements but the taste varies so much. Our local hospice gave us samples to try maybe your palliative care team have some they could drop round to him.


I know it's easy to say but you are doing everything you can in the circumstances. His GP is ultimately responsible for his care so if you are concerned about the wait for the drain, the reflux or the weight loss then contact the surgery and get them round just as you would if your were with him.


Thinking of you M xx

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I think I mentioned in a previous post about supplements, but just in case it was someone else's...here I go...


Fortisip and ensure are total meal replacements, but according to Nige tasted rank...we managed to get scandishakes prescribed, which taste much nicer. There is a full fat milk powder called Nido (probably other brands, but this is what we were told to get), which you can add to things...if the ascites is making him not able to tolerate normal amounts of food, you can get something called calogen extra shots...its just a mouthful of calories...not nice tasting, but does the job...but I found procal to be the best thing...you can add loads of it to small amounts of milky drinks, foods etc and it doesn't alter the taste or texture of the food or drink...Nige found he couldn't tolerate the clagginess of cream, butter and oil added to things, so this was a godsend to us...he'd have a scandishakes with 2 heaped spoons of procal and that was about 600 calories...I'd add it to the milk on his weetabix, in cups of tea or glasses of milk.


The ascites will be making him really uncomfortable...he'll feel so much better once that's been drained...Nige looked like he was 9 months pregnant when he went in for his and his tummy was virtually flat when he came home 7.5litres of fluid lighter. There was a chap in the bed across from us who had 14 litres drained every two weeks (he had liver failure)...he was a tall, big bloke, but still, that's a huge amount.


I do hope you can sort it so you can be with him, it must be so tough for you all being apart.


Much love


Vx

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I also posted about my son but I'll just do this one & hope anyone who's been thoughtful enough to respond will see it........

Phil died yesterday lunchtime. Was taken by ambulance Thursday morning, didn't get to a ward until after midday, we got the first flight we could, taxi for over two hours, got to the hospital 9pm - he was heavily sedated after hours of vomiting black stuff which may have been blood, may have been faecal matter and now we'll never know. Sat with him for hours, not able to respond because of sedation, went home for a couple of hours got a call 4.30ish, went in - they moved him to ACU where extra oxygen helped him rally but by later the following morning, after (THANKFULLY) more than an hour responsive and able to talk with difficulty, hold our hands, seek help with bed position, etc - generally be a bit bolshy despite his dire condition - his bp and sats started to drop away and we were there when he slipped away. Now of course I'm having 'beat myself up' moments re what I should have done before Christmas to push him to get treatment etc earlier; I now know he was in A & E for hours when even the specialist nurse had urged he be sent to at very least oncology... but none of it means anything right now. Bastard pancreatic cancer. Dad, Phil. Charlie needs to find out what tests he can have.

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Fiona, I'm so, so sorry. How awful for you both. I'm so glad you were with him and he was aware of you.


There's some small comfort in knowing that he's not in pain anymore, and once you've come to terms with all this and got over the shock you'll feel calmer about it all. From reading other posts on here it doesn't sound as though an earlier intervention would have helped a great deal.


Thinking of you and your son,

love

Mo

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Gosh Fiona...that was quick...I am so sorry. Sounds quite similar to how Nige finally went...confused and unresponsive, then a couple of hours of chat, albeit a bit garbled, then he said his dad had just visited and I knew then he was going. His sats, BP and everything started to drop and it was peaceful in the end.


The most important thing is that you were there with him when he died...


Much love...post when you feel like it, we're all here for you.


Vx

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Fiona, Sorry to hear your sad news, this disease is just relentless.

I am so glad you managed to get back to be with Phil when he passed away, you were there and he knew you were there, that's what counts. The what ifs maybes are endless and we all suffer with them, no matter what, its how you feel when you care for someone, you never feel as though you did enough. This disease is very sneaky, and diagnosis difficult, at least he wasn't really poorly for too long.Thinking of you and Charlie take care love sandrax xx

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Quickasyoucan

Fiona I am so sorry for your loss but glad you were able to be with him. All of us understand what a bcstard this disease can be. For what it's worth I am glad he was able to slip away peacefully. We all hope that for our loved ones. My mum who died of motor neurone disease at 70 went as they sat her up to wash her. They had been talking about discharging her as she seemed to be improving but I think she was just done and slipped away in seconds. Palliative care nurses have since told me that's a "rock star" exit as end stage mnd is horrible. Better to slip away peacefully and quickly.

Pc is insidious and there is nothing you could have done. Be kind to yourself and as dg said get as much help as you can for your boy xx

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Fiona, so sorry but glad you were there. They can monitor your son from age 18 if he wants it. I believe you are eligible if you have 2 close members. My partner's children may do this but the eldest is only 15 so too young at the moment. My partner's mother also died of it in her 50s as did he. But all that is for the future and hopefully first it won't affect them and second they will make more breakthroughs in coming years x

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Dear Fiona,


I am so very sorry that you have lost your man when there was so much you all still wanted to do. Try not to over analyse because with this disease there is no real escape, beating yourself up will not change anything and will exhaust you.

You did your very best for Phil and for your son, there are no instruction manuals for dealing with the things you have faced in the last few months. Console yourself with having been with him, his ordeal is over and he bore it bravely. I am sure he would not want to be remembered for his death but for his life with you and your son.


I send love and prayers to you both xxx

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Fiona I am so sorry to hear about Phil. There is no words I can say that the others haven't already done so. Please please do not beat yourself up. PC doesn't work in a way you could have been aware of it any sooner....it is a silent insidious disease that everyone on here can identify with.

I was so pleased to read that you both got home in time. Will be thinking of you and your son I know that life will be so confusing and busy in the immediate future but further down the line please let us know how you and your son are coping. Much love to you both

Elaine

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Dear Fiona


I am so very very sorry for your loss. So quick, I'm sure you'd not even come to terms with the diagnosis itself. We all beat ourselves up asking what if.... etc. Please let me try and reassure you when I say it probably wouldn't have made much difference - as you quite rightly stated, it is a bastard disease and I can only assume Phil must have had a very, very aggressive version to take him so quickly. My husband vomited black stuff at the end too, you can be 99.9999999% certain it was old blood and nothing else.


Please remember you are amongst friends here, although we like to refer to ourselves as forum family. Anytime you need to offload or just talk about how you are feeling, there will always be someone here who knows what you are going through sadly enough. My son was 20 when his beloved dad passed away 8 months ago so I can only begin to imagine how your son my be feeling.


As Elaine has said, please do let us know how you are getting on, if you can face coming back onto this forum.


Wishing you strength xxx

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Thanks to everyone who's responded. What of course is the follow-on nightmare is the admin juggling act which makes you feel you're barely thinking of your partner you're so busy with phone calls etc...... then some little thing will happen, or you'll think 'oh that's ok I'll ask Phil' ........... oh shit.

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