Likely pancreatic cancer. How do I tell my mum that I'm probably dying from the same thing that killed my father?

[Earlandmrsgrey]

As the title says. Been suffering with bowel problems/pain for sixth months. GP decides it must be IBS as bloods are fine, it's not coeliac disease and multiple fit test are negative. I'm not sure and carry on in more and more pain until I eventually feel a lump just under my ribs on the left. Have to wait ages to see another GP but he has a feel and sends a referral straight off for an urgent ultrasound. Ultrasound results show hydronephrosis of the left kidney with a possible tumour and more worrying of all is a mass in the tail of the pancreas.

I've not seen anyone else yet so still early on in the diagnosis but I know it's not good. I've been feeling more and more lethargic, I'm in more and more pain, my back is agony and I'm losing so much weight.

Fifteen years ago my beloved father had the same symptoms, he knew he was dying months before diagnosis and I was the only one who believed him. Eventually he got the diagnosis and lived for another fifteen days. I think I have longer than that as I'm still functioning fairly well but I know the outlook will be poor.

How do I tell my mother? I spoke to her a few weeks ago saying that I was unwell. All she could say was "please don't let it be the pancreas." I just want to protect her, that's who I am. Always the one to look out for others before herself. Then there is my husband who is not one to cope and then my young adult sons.

So sad.

Sounds like you doing amazingly. The fact you have energy left to still stear and push back on the gp is amazing.

Walnut Butter sounds amazing! He’ll have strong hands by the time he’s done that though… he’ll have to sit and crack while he watches TV in the evenings.

There’s a foraging group on FB that has lots of ideas for walnuts. Pickling them, making liqueur with them, etc.

I'm so sorry you're going through all this hassle with your GP, totally unacceptable. I'm at a loss as to how anyone can call the NHS "world class" when it's clearly not. There may be pockets of excellence but they are the exception. I honestly dread getting ill (here in Wales it's worse than England) and I'm sorry you have no choice. My very best wishes OP.

You can’t pickle walnuts at this point in the year, you pickle them before the shell has formed, usually late June/ early July in England

OP I hope you have a more comfortable weekend & are able to get plenty of rest.

A message to @Lougle you mentioned to the OP about 1500 calorie pancakes. Would you be able to give your recipe please as I have a family member who is severely underweight even though they are eating & it doesn't matter how much or what they eat they are still losing weight. Sorry to of asked on this thread as I know it is about the OP.

Sending love 🧡 That is the spirit! You are enjoying life as well as all the post-op rubbish you’re having to deal with. I salute you!

Len managed it at this time of year! 🪩💃🏻🕺🏻🩰🪩🪩🪩

@Beachtastic i have no idea who Len is, sorry, your partner? Although you can pickle anything at anytime as it merely means preserving in vinegar,
but were they edible?, I would be amazed if they were.

A rough recipe:
150g flour (546 kcal)
1 duck egg (160 kcal)
100 ml double cream (467 kcal)
75 ml full fat milk (50 kcal)
25g sugar (110 kcal)
1 tsp oil (40 kcal)
1 tsbp Nutella (80 kcal)
1 tbsp butter (100 kcal)

That comes to 1553 kcal and makes 3 fairly large scotch pancakes. Depending on the time of year, you may need a slightly different cream/milk ratio to get the right consistency. You can swap out Nutella for golden syrup.

Thank you Lougle.

I've never had a pickled walnut, or a pickled egg.
I'll consider putting them on my life list!

I was joking 😉 He was a judge on Strictly Come Dancing and "pickle me walnuts" was one of his catchphrases!

I'd eat the chocolate instead 🤣🤣

❤️

SEVEN ! 😄

@Beachtastic ah fair enough, anyway OP how are you doing ?

The egg is a disappointment. It’s rubbery and tastes of vinegar. No real joy in it at all.
I’ve only had pickled walnuts once and can’t remember what they tasted of so I assume it wasn’t mind blowing!

https://www.dineanddish.net/snack-time-recipe-whiskey-honey-toasted-walnuts/ Just going to leave this here! We made some as Christmas presents and they are AMAZING on top of porridge.

lovely to hear from you @Earlandmrsgrey , I can’t believe you are going on walks so soon after the surgery you have had. You’re something else x

They do look good! I'll pass the recipe onto DH.

Had a very lazy weekend and didn't leave the house at all. Basically I've been having a few stoma related issues. I need to soften the output but that's not easy when you only want to eat basic carbs! I'll throw some veg into the soup maker later and see if that makes a difference. Otherwise it's orange juice, licorice and CosmoCol.

In a few weeks time I should be getting a corset. This can't come soon enough, I feel like my insides are sloshing around my abdomen as there is now so much room for them. Still cat lie on either side as it feels so weird as everything moves about.

DH has left me a message saying he's taking me for a walk when he gets back from work!

You're doing so well @Earlandmrsgrey
It's wonderful to read your updates.

I know it's a typo but I read "Still cat lie on either side" as meaning you had a snoozing cat snuggled up on either side of you to stabilise the innards. Which at first glance struck me as a lovely solution to a horrible problem.

Enjoy your walk later, hope you get to see a sunset!

That is so weird to think about, space inside your body and you can feel it, what a strange sensation to get used to. I can understand the idea of a corset being appealing, make you feel more ‘contained’?

My favourite soup is parsnip, maybe with some apple or curry powder? Definitely add cream for the calories x

That is so weird to think about, space inside your body and you can feel it, what a strange sensation to get used to

DH had surgery to remove his oesophagus 10 years ago, and he said it felt weird to have had his insides rearranged. It all feels normal to him now.

I hope that you make a good recovery @Earlandmrsgrey 💐
I haven't posted before but have been following your thread. I'm impressed at how much walking you have managed to do so soon after your surgery.

Another walnut recipe I do is to very lightly toast them in a dry pan, smother them with brown sugar and just as it’s starting liquefy, a couple of bloops of balsamic vinegar. When it has caramelised, pour onto non-stick baking paper and allow to harden.
Break them up and pop them in a jar or tin. Great on their own, on baked spuds with sour cream and bacon, or in salad. (Beetroot, raspberry and goats cheese on rocket with red wine vinaigrette is my favourite.)

Otherwise get a slingshot and ping them at antisocial next door neighbour’s roof in the middle of the night.

I had a stoma for a while - it's since been reversed.

Be careful with soup. While it's a liquid (and a 'drink' in stoma diet terms) it can be quite high fibre depending on what's in it, so might have the opposite effect.

Are you on any opiate pain meds? They can really bung you up. I couldn't tolerate loperamide, so actually had coedine prescribed purely to thicken the output, not for pain relief. I'm assuming here that you're not on loperamide if things are not soft enough?

My first stoma was an end ileostomy and I could control that with marshmallows! But the second was a loop and was not as cooperative at all. Hence the codeine. Fruit juice definitely can have a dramatic effect, but basic carbs is exactly the right thing to be eating, low fibre, shouldn't in itself be causing things to be thick. Are you drinking enough water?

If the problem is the pouch leaking rather than you having blockages, you might need a pouch with a different shape adhesive plate and/or a belt. I've also heard of people adding a spoonful of water into the empty pouch so when you get output in there it thins it out a bit but not tried that myself.

Thanks for the advice.

I'm not taking any painkillers apart from paracetamol and I'm definitely drinking enough. The local stoma team have suggested trying a CosmoCol sachet every now and then and that seems to have helped along with the orange juice. I've also changed the bag type but am not sure whether it is any better.

Marshmallows are a big no though....having flashbacks to a very drunken New Year party decades ago and a game of chubby bunnies!!!