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.

Sending you the biggest hug. You're lovely

Special rules? I'd love to know how to do that cd help a few ppl I know in those circumstances, pls pls elaborate x

https://www.gov.uk/government/publications/dwp-factual-medical-reports-guidance-for-healthcare-professionals/the-special-rules-how-the-benefit-system-supports-people-nearing-the-end-of-life

The medical professional has to fill in form SR1 - the guidance is for someone with 'likely' less than 6 months but there are often unknown and unpredictable outcomes where cancer is concerned. Best advice is to ask someone from Macmillan to complete the form and they will get the Med Professional to complete the SR1.

I understand totally what it involves, our local cancer charity applied for us when it happened to us. The hospital told us we were eligible and the nurses at the charity filled in the relevant forms. We were not at all privileged and we had every idea what it entailed.

Glad your consultant was lovely and that things are slowly moving forward. Hope you enjoyed your potato waffles! Thinking of you.

Really glad your consultant was lovely, it’s what you need when your life and menu options are in their hands.

Would Smiley Faces be a better morale booster than Waffles? You could do a scientific test.

Thinking of you.

@Earlandmrsgreyyou read like one of those magical gems that exist with the perfect dose of inappropriate humour to swim through deep deep waters. I wish you and your family the absolutely best possible of anything and everything

Same 💗

Just read your whole thread OP and wanted to send a huge hug. I'm keeping you in my thoughts 💕

Potatoe waffles with an egg on top, followed by angel delight with custard creams for snacks. Takes me right back to my childhood!

Hi @Earlandmrsgrey, how was your weekend? X

I’ve just come across your thread and I wanted to send you a huge hug and a hand hold. I was diagnosed with bowel cancer in 2021 and have a permanent stoma as a result. I think the waiting for a definitive diagnosis and the waiting for treatment to start is the worst part. I really pleased for you that the breast lump turned out to be a cyst and I hope they’ve got your pain under control now at least. What I will say though is that there have been some incredible advances in treatments for GI tumours of all types in recent years so you will be well looked after. 💐

Hey hey Lady Grey:
just here to say still thinking of you in another week of this journey.

Sun is out here, may all things shine on you,

Currently in Royal Free waiting for a biopsy. Ended up having to make the 2 hour 'dash' here on Sunday night with potential bowel blockage. Apparently my bowels are still open but only if I live off laxatives and even then can only pass a small amount of diarrhoea. Fun times.
Plan is biopsy and if GIST (now more unlikely) then take gleevac to shrink it or if retroperitoneal tumour (most likely) then surgery. Trying to fight with health insurance people to get this done privately at the Wellington where my consultant has a specialist team there. However, the Wellington is not on my authorised hospital list. I'm sure it will somehow all work out in the end.

Good luck. Honestly having had my dad operated on privately and then trying to get transferred into the NHS after was a bit of a mare. I’d stick to the RF if you can.

Oh gosh OP I'm so sorry you're going through this. You seem to be picking the rare ones 😖 I hope it's all operable and manageable and that you soon have a clear pathway of care with a successful outcome. 💗

Sending love and a soothing cup of tea @Earlandmrsgrey ❤

Sending fortitude and a hand hold while you wait.

Goodness me @Earlandmrsgrey - so sorry to hear this latest turn of events. Fingers crossed you feel better soon and you get a definitive diagnosis and plan in the next couple of days.

Sorry to read your latest update and I hope they will move quickly now. Wishing you all the very best for whatever lies ahead.

Biopsy done.
If it's not a GIST then surgery will be on Friday.

That sounds like good news (I think) @Earlandmrsgrey xx

All the best OP - hope you get the results asap so you know where you stand.

Wishing you all the best OP x

Love your humour OP - really wishing you well ,