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Thank you and our story... but we are not that far yet!


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You are like a whirlwind! Amazing! Your dad is so lucky to have you.

Lots of doctors have recommended a consultation with prof for immunotherapy advice.

Wish I could help you more xx

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  • Dandygal76

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  • Proud Wife

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Thanks Helliemo, I can't help myself at the moment. How is your grandmother doing since the nanoknife? Is the new chemo routine gentler? x

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Your ramble away as much as you like!


I actually took something away from your post and have ordered today one of each different type of ensure products for hubby to try as well as ensure juice. I will let you know what they taste of but some of these products pack a punch where calorie content is concerned.


Think you are absolutely amazing D76!! xx

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I am hoping W&M will read this - how do you make jelly from the fortijuice? I have only ever made jelly from the packets. Thanks. x

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I should also mention Helliemo that it is was Profesor that dad first saw when he got diagnosed as terminal. I e-mailed him desperately and I had a reply within 5 minutes even though he was in America at a conference. In a few short e-mails and then the consultation he changed our whole outlook because he was 'let's beat this thing'. I know my dad is likely to succumb to this eventually but Professor gave us our hope back. The mentality of the whole family shifted back again towards hope rather than desperation. Professor got dad on the trial. I couldn't thank him enough... The NHS are being pragmatic when they deliver the news but everyone needs hope and everyone needs a chance to fight. We found the NHS quite distressing, the nurse even had a go at dad in the meeting to say he is terminal about queue jumping when he said he was going to go private but they had already taken ages from diagnosis and dad was still not getting treated. I want to write these things on here. It gives me hope that we will be the ones still writing in 2 years about an ongoing fight and that this story will help. I am sure everyone thinks the same at the start. It just helps me to write it all.

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Dandygal

I hope W and M responds to your post. I haven't made jelly from fortisip but I think what you need is gelatine which is a setting agent.

Catherine

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Ensure Juce jelly recipe


INGREDIENTS

Ensure Plus Juce. Qty: 1 x 220 ml bottle

Leaf Gelatine (I use Dr Oetker Platinum Grade). Qty: 1 and-a-half leaves*


*[if using different quantity of liquid with Dr Oetker gelatine leaves, the guide is that 4 leaves sets approx 1 pint (570 ml) of liquid].


METHOD

1. Put gelatine leaves in a shallow bowl and pour over enough Ensure Juce to just cover. Leave to soak for 5 minutes, or until leaves are soft and pliable.

2. Remove softened gelatine from bowl and squeeze out any excess liquid.

3. Pour the remaining Ensure from the bottle into a small saucepan and add the soaked gelatine leaves. Heat slowly over a very low heat until gelatine is melted. This only takes a few mins or so. Do not let mixture boil as this can prevent a good set for the jelly.

4. Take liquid jelly off the heat and pour into a jug through a sieve to catch any unmelted pieces of gelatine. Pour the liquid into a mould - I use a drinking glass.

5. Chill jelly in fridge until set.

6. Eat and hopefully enjoy!


IMPORTANT

Use jelly within 24 hours as Ensure Juce doesn't last longer once opened.


Love

W&M xx

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You go girl! keep on fighting, mixing, juicing , freezing and hoping! Everyone needs to do the best they can and everything they can for their loved ones. You seem like a strong, independent woman - just what your Dad needs.

xxxx

Linda G

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Thank you both so much. Well, all pots are made and ready to go but we have hit a snag... dad is eating like a trouper (how inconsiderate is that! Ha ha) although very drowsy from Emend and Lorazapam. We have decide to cut Lorazapam in half (what is a low dose PC nurses?). He is not really following a conversation properly. However, he is hugely better in terms of eating and so I have sent the pots round and said just try them, as and when, so we have an armour for pots in future but if he wants bacon for breakfast tomorrow then go for it! It has been an interesting experiment anyway in terms of what packs a punch for calories and nutrition but is small and what also packs a punch for nutrition but is bulky. It is a good armour to have and I had to ditch a few dishes that just looked too big but had same calories. I have made a sweet egg recipe (I was going for citrus and sweet due to his taste changes) that is amazing in terms of how small it is and how many calories it delivers. Probably 3 mouthfuls with 2 eggs etc in it. Also, a great avocado mousse that is similar (dad hates avocado but doesn't notice when disguised). It has been useful for future reference but right now I am more than happy for him to eat whatever the hell he wants! x

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Dandygal, delighted to hear that your Dad has found his appetite again. And as you say, it's no bad thing that you have a plan B up your sleeve. Sounds like you are being a tremendous support to your parents, they must feel extremely proud and grateful that you're working so hard on their behalf and leaving no stone unturned.

W&M xxx

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Thanks for the recipe Wife & Mum, you couldn't have timed it better, my order arrived today! In case anyone interested, I ordered ENSHAKE (from the makers of Ensure) which is a powder you can mix with fresh milk and hubby said it was very nice - plus one glass packed a punch of 600 calories.


I have to ditto what Wife & Mum has said about you D76. You are unbelievable! Shall we start a new thread entitled "Calorific recipes" or something like that, would like to see what you've made as I strongly believe home made is better than shop bought. I started to make a summer fruit compote and changed my mind and have ended up making jam which is delicious!


Fantastic that your dad is eating so much better but is it the drowsiness that's making it hard for him to follow a conversation? I would call the special nurses on Monday morning, they are absolutely brilliant and have been a life save for me.


Keep up the good work D76 and let's see if we can get both men fatter!!


Lots of love and best wishes xxx

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PCUK Nurse Jeni

Hi Dandygirl,


What dose of lorazepam was he actually prescribed?


Thanks,


Jeni.

Pancreatic cancer Nurse Specialsit,

Support Team.

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Dandygal76

Hi PW, we are fine and ticking along. Dad had his week off last week and so is feeling very good this weekend and designing my son's bedroom with him that they will do after his GCSEs this month. It is all a bit surreal really. I did mean to buy the same numbers on Friday but my car broke down and I had to leave it at work and get a taxi home so I could my youngest son to the cub camp coach so it was all a bit chaotic and I did not get a chance. I have taken a bit of a step back from the online browsing etc because it was getting a bit too much and quite consuming. I am still looking but I am going to just do PC stuff online once or twice a week and not when I am drinking the devil's wine, because that is always a winning strategy! Dad gets his first scan tomorrow since starting the trial and so we shall see what that will bring. He will then see Professor 4 weeks tomorrow as well to discuss the Nanoknife and we will pay to get him a PET scan privately because the trial only does CT scan tomorrow. If we get an inkling the trial has sorted his Metatisis then we will push for the Whipple on the NHS (I am still as ever hopeful!). So, tomorrow is a big day. Fingers crossed. How are things going your end. I will catch up with your thread now. x

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Proud Wife

Oh my goodness, that came around quickly! I wish him the very best of luck with the scan tomorrow, may you only hear good results. Please let us know as soon as you know. Will be thinking of you. Sounds as thought your Dad is doing pretty well.


By the way, I ordered and read the book on Bob Brown and his journey with PC. If anyone wants my copy, just ask moderator to pass on name and address and i will post it out.


Lots of love

xxx

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Dandygal76

By way of an update, dad had his scan and the results have been positive. The tumour has shrunk by 7%, the liver lesions are not so well defined and the lymph nodes are back to normal size. There is no sign of bone mets on the ct scan but this did not show until a PET scan before anyway so I am not reading too much into that. It is going in the right direction and so now we need to wait until the next scan in 8 weeks time. In the meantime dad is going to see Professor regarding the nanoknife on 25th however, we have some indications that the trial sponsors may have more trials in the pipeline so I will keep everyone posted. Dad cannot have the nanoknife whilst on the trial so this is just a meeting to set up the next steps. However, if another trial becomes available he will probably go on that first if mets are still showing because that would be the most beneficial choice. The trial doctors seem very pleased.


As for dad, his symptoms seem more manageable and I think the lorezapam really helped with this - I cannot thank PCUK enough for that advice. He has slight nausea but it is intermittent. The main issue now is a seriously salty / bad taste in his mouth and he tires easily. He is much more upbeat now we have had the positive result. I am unsure how positive this is compared to other stories though, I understand that normally the cancer will become resistant at some point.


I am also in a much better place. It is funny how your feelings and attitudes evolve over time. I look back on some of my posts and cringe and nearly deleted / edited some of them. However, I decided not to because that is the raw reaction I had to things and that may help others who go through the same emotional roller-coaster sometime. I hope I can stay in this calm place for a long time but reading everyone's stories and the demise of some this week I know I am very lucky to have what we have right now and to appreciate each and every day. x

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PCUK Nurse Jeni

Hi Dandygal,


This is wonderful news - very pleased indeed for your dad!

Great that the plan is all going well, and that he has options available to him if needs be.


Thats great to hear the Lorazepam is working - brilliant, and certainly does make a difference. Great that your dad's symptoms are more manageable and that the positive CT result has buoyed him up.


Also good to hear you are in a better place yourself, and that you are more positive. Yes, things change during the "cancer journey" - sometimes quite fast actually, and you are right, this is the rawness of what goes on when you get such a shock and such a diagnosis. I agree there is no need to take any posts down - but, well done that you are moving on from those initial feelings.


Take care,

Jeni.


Pancreatic cancer Nurse Specialist,

Support Team.

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Proud Wife

Fantastic, fabulous, wonderful news D76, so pleased to read your hard, hard work is paying off.


Never ever cringe at what's been said before. It came from the heart. I am so so happy to hear that you are in a better place now.


Spot on, appreciate each and every day. It's something I am trying to learn to do now, rather than worry about what the future has in store for me on my own. xxx

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Dandygal76

With the review of my posts and the latter responses I feel like I offended everyone other than PW. I am sorry for that. I was not my best but I have a good heart. You will all get out the other side of this, I promise, and I wish you all the best. x

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Dandygirl, I do not feel in any way offended, and I am more than certain you have a good heart, and that you are just trying to do the very best for your beloved Dad and help anyone else you can along the way. Please don't feel the need to step back from the forum ( I read the post on Mark's thread} you posted with the best of intentions I am sure, and I for one need to know if your Dad manages to build the new bedroom for his grandson, take care love sandrax

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WifeampMum

Hi Dandygirl,


I'd be really surprised if people took offence over your posts so please don't feel you have to stop posting unless you have other good reasons to stop. This Forum needs posters like you so I do hope you will stick around for as long as you want.


I was so pleased to hear about your Dad's good CT results and wish him continued good news for his treatments.


W&M xx

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Hi Dandygirl,


You have have done absolutely nothing wrong at all and neither have you wife & mum. This forum needs people like both of you. I know myself when my Dad was poorly, I would have welcolmed any advice and help I could possibly get, if I chose to listen to it then that was entirely up to myself. If I was getting no help, I wouldn't have continued to be here. Please both of you, please still post. You both need support and it saddens me you feel this way. Everyone needs support here, whoever they are, whatever their circumstances. We do not have to take advice we don't feel is 'helpful' to us, and to our situation. We post 'helpful' things because we care and want to help our loved one.


Leila xx

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Proud Wife

Totally agree with everything Leila has just said.


Leila, you are spot on. I too welcome any advice, whacky or otherwise. Whether I will take it is another matter but as I said before, knowledge is wealth and when you are literally fighting for survival, you never know, one comment here or there may...just may....make a difference.


D76, whatever you do, please continue what you have been doing because you are far ahead of me in terms of research!


xxxx

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