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boa
Posts: 131
Joined: Thu Jul 09, 2015 1:13 pm

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

Postby boa » Sat Apr 23, 2016 10:09 am

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

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

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

Postby Wife&Mum » Sat Apr 23, 2016 11:12 am

No problem Dandy, I'll post recipe later today once I've checked quantities. xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Sat Apr 23, 2016 11:26 am

Thank you so much. x

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

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

Postby Wife&Mum » Sat Apr 23, 2016 12:49 pm

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

Linda G
Posts: 108
Joined: Fri Sep 11, 2015 2:06 pm

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

Postby Linda G » Sat Apr 23, 2016 4:56 pm

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

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Sat Apr 23, 2016 6:50 pm

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

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

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

Postby Wife&Mum » Sat Apr 23, 2016 7:26 pm

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

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Sat Apr 23, 2016 8:33 pm

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

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

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

Postby PCUK Nurse Jeni » Mon Apr 25, 2016 3:59 pm

Hi Dandygirl,

What dose of lorazepam was he actually prescribed?

Thanks,

Jeni.
Pancreatic cancer Nurse Specialsit,
Support Team.

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Fri Apr 29, 2016 9:08 am

Morning D76

How's your Dad?

Love PW xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Mon May 02, 2016 4:27 pm

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

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Mon May 02, 2016 10:13 pm

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

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

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

Postby Dandygal76 » Thu May 05, 2016 10:31 pm

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

PCUK Nurse Jeni
Posts: 1078
Joined: Mon Jun 14, 2010 1:30 pm

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

Postby PCUK Nurse Jeni » Fri May 06, 2016 11:27 am

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.

Proud Wife
Posts: 740
Joined: Sun Jan 17, 2016 9:28 am

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

Postby Proud Wife » Fri May 06, 2016 11:33 am

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