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Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

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

Postby Ant11 » Tue Apr 19, 2016 1:49 pm

You will find the support of Jeni and Di "priceless", they help us more than you can imagine with all the pitfalls, medication and things that really helped. EMEND is the best for sickness too, so hopefully this will help.

Regarding weight loss, Tracy at diagnosis found it really hard to eat and maintain weight. To help this we were prescribed complan and used full fat milk. It really helped and is full of vitamins needed. Maybe give that a try? Good luck and keep battling. Love Annette x

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 » Tue Apr 19, 2016 3:57 pm

And, thank you Jeni. The e-mail sent to me re dad previously was very helpful. Dad read it and did increase water intake etc and I think because it came from you guys it wasn't viewed as a nag! L

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 » Wed Apr 20, 2016 12:47 am

alimc77 - my children are 8 and 16. How are you doing and how is your dad. I am so sorry I did not have the mental capacity to respond before. Other than my little meltdown last night I am so much more level. My mum was so upset yesterday and it just knocked me for six. Did you get a puppy? I am telling my eldest in August it is terminal (I don't want him home alone in school holidays with it). Puppy may follow that. I hope you are okay. x

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 » Wed Apr 20, 2016 12:57 am

Thanks Annette. My dad will not tolerate full fat milk, he seems to want tangy - certain fruits, Tizer, frozen yogurt, and rich tea biscuits seem to be the flavour of the day... none particularly good for blood sugar! He is managing to take a multivitiman and carcumin. I also have a lot of supplements in liquid form as he is so anti pill at the moment! we are squirting that and olive oil stealth mode into anything we can. He says the taste / sickness thing is also a mental battle now. He cannot distinguish between whether the taste is sick/nausea or the metallic taste. It all just tatses awful, especially water. If he thinks of a smell he can be sick without being in the vicinity of food or smells. So, stealth mode supplements and calories in the pots and perhaps try some hypnosis is my next thought. He is an East End boy though... I may not convince him of hypnosis! x

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

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

Postby Didge » Wed Apr 20, 2016 9:31 am

Just thought I'd mention that fortijuice can be used instead of fortisips for those who don't like dairy or can't tolerate it. You can also get fortijuice shots which can be taken in one mouthful so if your dad likes fruity that might be one way to help. I understand the fluctuation in blood sugar can be a nightmare but that is fairly common with this as both the disease and the meds can add to the problem. Does he test himself? That is useful for keeping track. xx

PCUK Nurse Jeni
Posts: 1087
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 » Wed Apr 20, 2016 10:50 am

Hi Dandygal,

Great to have more information about your dad - actually, what you are describing about particular smells being able to make him feel sick without even being near this, is a good clue.

Hope you got my email from yesterday?

This seems to be what we call "anticipatory nausea" - and its basically that - you can end up getting sick even at the thought, or smell of certain things.

There is a very good medication which is very effective for this type of nausea, and its called LORAZEPAM. Again, its main use is not for this, but by giving smaller doses, it does a very good job at helping anticipatory nausea.

Perhaps dad/yourself could discuss this with his care team? or GP even? It shouldn't be an issue getting this - many, many chemo patients will suffer from anticipatory nausea/vomiting, and so, its a common medication to use in chemo circles.

I hope this helps?

Kind regards,

Jeni,

Pancreatic Cancer Nurse Specialist,
Support Team.

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 » Wed Apr 20, 2016 6:51 pm

Hi Jeni,

I did not get your e-mail and I have just recovered my deleted and checked and they are not in there either. Could you please resend it to me?

I have given my dad the info above and he is going to discuss it with the trial - thank you so much.

Thanks

Leigha

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 » Wed Apr 20, 2016 7:10 pm

Hi Didge, he does test himself when he is feeling better in himself, I have ordered some of the fortijuice to see if he can tolerate them - thank you for the suggestion. I will divide by 2 and add to his meal plan, apparently you can freeze them as well and he seems to be better with frozen things. I have ordered some silicon calipo type containers to try and get inventive with this food plan I am doing. So, with protein powders and everything else I have ordered to do this meal plan it has cost an absolute fortune. £6 each just for the fortijuice! Mum is coming round Saturday and we will make it all for a test on Sunday. If it works I will publish it here for others (if they find they have similar taste issues) but I suspect some pots will be rejected immediately and chances are the whole thing will fold by Sunday evening. But, at least we would have tried! 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 » Wed Apr 20, 2016 8:11 pm

Hi Dandygal

Can you not get the fortijuice on prescription? My hubby currently very reliant on Ensure (dairy) and we get those prescribed. Keep up the great work, more you cannot do. I think you are doing a brilliant job and you are entitled to have a meltdown once in a while. Of course it must be so awful to see your mum upset. Make sure you find time to take care of yourself too.

The best of luck for your food plan, rooting for you 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 » Wed Apr 20, 2016 10:29 pm

Thanks PW. My mum works at our doctors and being a village doctors I have had the same GP's since childhood. If we can get it on prescription then they will give it to us but I am lining up everything to sort for Sunday and wanted to get it all in ready. My dad also suffers from Asthma since childhood and orange and lemon cordial would always cause a blinking Asthma attack in him for some reason (apparently it is quite common). So I have ordered the blackcurrant one and will test it before and make sure he likes it before I annoy our poor GP's again with my next scheme based on whatever research or idea I have come up with. I am finding I need to pick my battles and my timings with this stuff rather than the previous scattergun approach. The other expense is liquid supplements like Selinium - what on earth makes them so expensive is beyond me. We are also funding things between me, mum and my sister. My sister and I are in reasonably well paid jobs and so we are lucky to have a combined resource but we want to save for other treatments. My dad has been a decent man and saved all his life to top up his pension with interest from his savings and then leave his money to us and the grandkids. He is of that old school saving up to leave his money to us (we don't want his money, we want him!). It is hard to get him to part with his money and he will refuse if it dents too much so we need to build a war chest. We have told him to leave his house to the grandkids and spend the rest on treatment because he has done enough already to make sure me and my sister are okay... but no. He can actually put a price on his life... he said at the start of this 'I will tell the Professor I have about £10k I can put up and see what he can do for that!' Hahahaha! Thank god my mum is still about - ultimately she wears the trousers in that household, hence nanoknife and cyberknife will be taken if he is eligible! £10k indeed! Look at me, I am rambling again! Have a nice evening. x

Helliemo
Posts: 24
Joined: Fri Dec 18, 2015 11:46 pm

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

Postby Helliemo » Thu Apr 21, 2016 11:29 am

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

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 Apr 21, 2016 12:22 pm

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

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 » Thu Apr 21, 2016 4:37 pm

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

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 9:17 am

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

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 9:38 am

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.