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.

Wow! Amazing update OP! So pleased for you!!!

That is excellent @Earlandmrsgrey 🤞fingers crossed that more good news follows.

Brilliant. Hoping for more good news later. We use arnica cream for bruises, maybe it would help the sore boob?

Wretched cyst, causing all that worry at the worst moment! Get thee to the medical waste bin and burn!

Glad you have that problem of your chest!

Also good that you are part of a study at a top specialist hospital.

And that you are creating hydrangeas just as the real ones are losing their bloom.

Fab news! Now onwards and upwards x

Brilliant news!

Fabulous news. How are you feeling?

Fab news!

So now the breast is sorted, what is happening on the other stuff? Have you had any follow ups or still waiting?

So pleased that's been sorted - best of luck with rest

I have an appointment at 10am at UCLH on Friday.
How I get there is now the next saga!

That's great then, I'd ask if you can record it if they don't mind or have someone else making some detailed notes, as it will be lots of information you may want to go back to. Give us an update afterwards, but now that they've got a plan, it should hopefully kick in very well from here.

Great that you have an appointment. From my experience of London today, it is busy and there are a lot of very slow moving roads (I've been in the area from Euston down to Royal College of Surgeons/ Covent Garden). Allow extra time if in a taxi / bus - pathways are busier due to a heavier volume of people and bikes riding on paths too ...!

@Earlandmrsgrey i’m not sure where you’ll be travelling from but the tube strikes will be finished by Friday so hopefully that will make your journey easier xx

Phew @Muchtoomuchtodo !

Fingers crossed for Friday

You dont need permission to make a recording of anyone provided it is just to play it back yourself to refresh your memory. Personally I'd just do it rather than ask permission. I dont think they'd refuse as it well known that patients find it hard to take in everything once cancer has been mentioned, I still wouldnt risk it. Having permission only matters if you want to use it in a court case.

Yes true, just once, I had an appointment and wasn't recording but just looking through my notes I'd written before, and I was accused of it by the registrar. They were nice about it (after I had a clearly shocked reaction) but I think with social media, more patients are recording staff without asking and posting it online, which is why they are now very wary of it. But obviously OP, if you want to you can, it can help as they say so much and sometimes you just want to go over a point.

My thoughts are with you for your appointment tomorrow OP.

Im not sure where you live but is there an option to go into Euston or Kings Cross/St Pancras via overground? TFL are warning of widespread disruption on the tube network tomorrow morning.

Thinking of you OP -

I'm in Hampshire so trains take us to Waterloo. I think we will just get an earlier than necessary train and go for a black cab. Money saving me is not happy about this but I can't walk far and am scared of too much jostling to the stomach area!
We did think about driving to Watford tonight and then getting a hotel and overland train to Euston but that's just silly.

A cab sounds like a good idea. Which branch of the hospital are you going to?

Podium outpatients in main hospital. Had to ring them to find out as all I got was a text message to say it was at 10am with general surgery outpatients. Aiming to be really early just in case it is somewhere else.

NHS communication at its finest!!! (Please can we have a sarcasm font)

Urgh it’s so rubbish isn’t it. I hate it when things are written with the perspective of someone who knows the place very well as opposed to a visitor. I have been caught out a few times at hospitals with many buildings in different places! Getting there early sounds a plan. Really hope it goes ok and brings you some answers and a plan for the next stage.

Thoughts with you for your appointment today op.