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

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fionaw
Posts: 20
Joined: Thu Feb 09, 2017 4:42 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby fionaw » Thu Feb 16, 2017 8:03 am

Thanks. Even getting a nice message like that makes me cry! I'll read it properly once I've dried my eyes lol

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Didge » Thu Feb 16, 2017 8:09 am

I don't think the ascites will be helping with the reflux either. Is there no chance of getting it drained earlier than next week? X

Marmalade

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Marmalade » Thu Feb 16, 2017 10:49 am

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

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Veema » Thu Feb 16, 2017 6:06 pm

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

fionaw
Posts: 20
Joined: Thu Feb 09, 2017 4:42 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby fionaw » Sat Feb 18, 2017 10:25 pm

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.

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Justamo » Sat Feb 18, 2017 10:40 pm

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

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Veema » Sat Feb 18, 2017 10:54 pm

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

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Veema » Sat Feb 18, 2017 10:58 pm

And no...don't beat yourself up...there was nothing you could have done, but we all do it.

Vx

Sandiemac
Posts: 69
Joined: Tue May 10, 2016 11:27 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Sandiemac » Sat Feb 18, 2017 11:08 pm

I have been following your thread but not commented up to now. My heart goes out to you. I am so sorry.
Sandie (hug)

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby sandraW » Sat Feb 18, 2017 11:10 pm

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

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Quickasyoucan » Sat Feb 18, 2017 11:15 pm

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

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Didge » Sat Feb 18, 2017 11:31 pm

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

Marmalade

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Marmalade » Sun Feb 19, 2017 12:00 am

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

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Wife&Mum » Sun Feb 19, 2017 12:04 am

Fiona, I am terribly sorry for your loss. Thinking of you and your son at this awful time and sending you my heartfelt condolences.
Love
W&M xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: New Diagnosis, First Oncologist Meeting tomorrow

Postby Elaine123 » Sun Feb 19, 2017 8:04 am

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
X