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.

From someone who's been following your posts from the beginning, I'd like to send good luck to you for today.
I love your wit and hearing you talk about your hobby.
have you ever tried smocking?

I hope it goes well today. Definitely ask if you can record or at least take photos of the important scans etc.

We had the same dilemma about traveling into London for appointments, although we were Kings and then St George’s. It does add to the stress of the situation but honestly those big London hospitals are amazing.

Thinking of you today OP.

If I was the doctor I'd rather you didnt ask and just recorded it. Asking means you can use it against me later, just doing it means if you did want to put it on social media it would be illegal and I could get it removed.

Hoping they'll be able to tell you more and have a plan for quick treatment.

Finally met my UCLH Consultant this morning who is lovely. He isn't 100% certain that it is a GIST but is another kind of sarcoma instead. The intention is to do a biopsy in the next couple of weeks but that needs the permission of a Senior Radiographer first to ensure that it is safe to do so. Then they intend to remove it but this will also include the removal of my left kidney and a good portion of my colon. Will possibly/probably end up with a stoma.

Enjoyed a very slow walk back to Waterloo via Liberty's (resisted the advent calendar!) and numerous coffee shops. I have also been put on a low bulking diet...basically a student type diet of white bread, pasta and cake. I shall be asking my youngest for tips!!! No fruit or veg unless tinned or boiled to death, this is to try and keep my bowels open so it can all slip out nicely!!

Feeling more positive but very aware that there is a very long, hard road ahead. Now we just have to contend with the finances. The rare cancer tax cost us about £190 in travel costs alone today. Fortunately we can cover this with some family assistance but I feel for others in the same boat who are less financially fortunate.

Thanks as always for all your support and messages. It really makes a difference xx

Wishing you well OP, may I suggest you make an application for PIP. The Macmillan Service in your local hospital will assist. I would be astonished of you didn't qualify, in fact im positive you will. I see your in Hants like me, happy to signpost to a service if needed.

Take care of yourself xx

Wishing you well OP, may I suggest you make an application for PIP. The Macmillan Service in your local hospital will assist. I would be astonished of you didn't qualify, in fact im positive you will. I see your in Hants like me, happy to signpost to a service if needed.

Take care of yourself xx

PIP, this is what PIP is for. Macmillan might be able to help you apply.

I wish you every success in your journey and I hope it is gentle on you.

Glad to hear your consultant is good and that there is a plan in place.

there used to be a way of reclaiming travel expenses to non-local hospitals, may be worth asking MacMillan or similar if that’s still available.

Hope you have a decent trip home

Sorry I've no idea why my post was duplicated x

If your income is very low then there is a support scheme for travel costs https://www.nhs.uk/nhs-services/help-with-health-costs/healthcare-travel-costs-scheme-htcs/#:~:text=with%20health%20costs-,Healthcare%20Travel%20Costs%20Scheme%20(HTCS),Travel%20Costs%20Scheme%20(HTCS).

Applying for PIP is a good idea.

At least there is action planned now, always easier to deal with the known than the unknown.

I really hope you get the treatment needed to continue your life with family. I do wonder tho bread,pasta an cake are starchy and will block your intestines, I remember from when my mum had chrones and stomach cancer.

@Earlandmrsgrey wishing you well on the student diet!! Do apply for everything and its mother financially too . It is a big positive if they are looking at taking surgical action - really wishing you well

Sending you so much love ❤️

Am I on my own with this recommendation?

Pip will help if end of life or terminal, no choice and will prioritise .

It's a different situation and diagnosis so no not the case.
I don't think it's sensible to advise against crucial dietary management advice from a consultant based on some Internet posts.

Dietary management?apologies but anyone considering cake an carbs as a way to pass stool easily is very mistaken 🤔 any professional in such area wd not advise this. Unless I'm missing vital information that states needs to be bunged up?

My guess it it is a low FODMAP diet.

Does no one understand what it entails to receive pip or how long it could take, a person with terminal illness usually gets refused until request mandatory reconsideration. By the time get all evidence sent, said person has passed.
Ppl here appear privileged and no idea how or what it entails. Most are judgemental and no idea of life beyond their bubble.

I would not be recommending anyone to ignore the advice of a specialist consultant since I am an arts grad with no more than anecdotal experience of friends and family with a range of completely different conditions to the one the OP (probably) has.

Advise against? Who said is fact? This is nuts.

Yes she'll probably get refused PIP and have to appeal - doesnt mean it's not worth trying as she may win on appeal.

As for the dietary advice it does seem a odd but people do respond differently to food. I hope op recorded it and can check they didnt say that was the diet to avoid!

DIET-002-LowFibrelowresiduediet-2019.pdf https://share.google/SS82ftnsV5FZZbwAV

It's this. I maybe being slightly blase about the student diet bit but that is my coping mechanism. In reality I am not coping and am terrified every time I go to bed at night. Humour is what makes our family tick and I'm trying desperately to cling on to that.

Tonight I shall mostly be eating potato waffles with a side helping of Cosmo col, mint tea and morphine. Seems the perfect meal to serve up to Greg and John in the MasterChef kitchen. They both deserve a dicky tummy for a year or two!

Not the case at all, she can claim under special rules , Dr's and Cancer nurses fill these forms in routinely when a patient is undergoing significant treatment and when the likely outcome is unknown. It does not have to be a 100% certain terminal end within 6 months. My late mum's Cancer nurse did my mum's AA claim and said 'we know how to word these so don't be alarmed at what is written. My mum lived nearly 7 years from a terminal diagnosis of metastatic lung cancer.
I know 6 people who have been fast tracked for PIP recently who have various diagnoses of Cancer, including leukaemia and Ovarian, all successful with yearly awards implemented, as they should be.