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.

Today I discovered that I have a follow up booked for next Weds (5th). I only found out by logging into the UCLH patient portal because I hadn't heard anything. No email or text or letter to suggest I check the portal. No wonder people miss appointments.

Last week we went with my neighbour (who has been wonderful and so supportive) to a local garden centre. I figured it would be airy enough to calm my fears about other people's germs. It was great to get out. I've now been jabbed for flu with no aches or pains.

Also saw friends for brunch on Saturday. I say brunch...they all had brunch but I eyed the menu with suspicion and settled for toast! I'm still mostly a fussy toddler when it comes to food but every now and then I suddenly get cravings. Today these have been for full fat coke and spinach and cheese muffins. I guess I'll discover what impact they have on the stoma later!

I've joined a Facebook stoma group as recommended by someone on this thread. It's a fabulous group and they have inspired me to risk bag less showers. No incidents yet but the bleach is on standby! Still having a few issues with the thickness of my output but I have an appointment with the stoma nurse on Thursday to deal with that.

Looking forward to seeing my colleagues on Monday...I've missed out on a lot of gossip, and my 50th birthday event. It was a Sip and Paint class which was booked ages ago. I was looking forward to proving to them exactly how bad my painting skills are. I may be creative in other ways but drawing and painting are beyond me!

Considering a trip to Pembrokeshire next month to visit an old friend. I could do with a change of scenery.

Lovely to hear such a positive update OP. Those moments of normal are so important and that's what I craved when I went through cancer treatment myself. Enjoy the gossip on Monday - sounds wonderful! Sending love x

Fabulous news! Sending hugs and love ❤️

You are doing brilliantly! I’m glad the stoma group has been useful - they gave me a lot of good advice when I first had mine. I always think that if you have a craving it’s because your body needs the nutrients in it (probably not true but that’s my excuse!) and the only way to find out if your stoma is ok with things is to try them 😊 Enjoy your trip away!

It’s lovely to hear from you, and to hear you are doing well. I think a change of scene would be perfect!

What are you crafting at the moment?

OK @Earlandmrsgrey You now deserve my stoma story. I have a friend whose husband had a stoma following a Ca. diagnosis, he did really well but was concerned about the smell... so I explained that my family used to keep matches on the side if my brothers did pongy poos. A match would be lit to dissipate the odour, although in truth it was a different but stronger smell that did the job (aided and abetted by an open window).

So a few days later, he decided to try this method after removing his bag... unfortunately as the match burnt down, he realised he had nowhere to put the spent match, so he tossed it into the stoma bag, which promptly exploded over everything as the match ignited the gases! They now have an old Marmite jar on the window sill for spent matches and yes, his wife has forgiven me for telling him about matches... I cried laughing when she told me whilst trying to apologise.

Pembrokeshire is good for the soul, OP. Glad to hear your progress 💗

I thought for a moment that "coke and spinach and cheese muffins" were one thing and was wondering what they'd be like.

It'll be a bit chilly in Pembrokeshire this time of year but a change of scene and a catch up with an old friend still sound good.

It's great to hear that you are out and about. Exercise and socialising..
Enjoy your lovely trip.

Glad to hear you are getting out and about and seeing friends. I’m in awe of your strength and humour - I’m sure you have your moments, but it’s lovely to read of your positive achievements. I hope the appointment goes well.

You are doing amazingly well :) Enjoy your trip to Pembrokeshire!

Follow up was yesterday. Trains can be really bumpy when your stomach muscles are on tatters! Avoided the tube and took a cab to the Macmillan cancer centre at UCLH. Had my first maple and pecan danish for months...they are my favourite but I still ended up picking the pecans off as I don't trust nuts at the moment. Decided that it wasn't as good as the one they do at Lidl. Coffee was fine.

The lighting in the lift gave off a strange lavender glow and I looked truly dreadful in the lift mirror. We didn't think that was a great choice for cancer centre!

Anyways, the bit your all waiting for....I have an intermediate risk of reoccurrence. Neither high or low but somewhere in the middle. Not sure how I feel about that. We at least had plans if it was high risk...sell the house, find somewhere much smaller, quit my job and live for every moment etc etc. With low risk it would be recovering until fit to return to work and then carry on as normal. I didn't assign a plan to intermediate risk! Feel a bit lost really.

I shall have scans back at UCLH every 3 months for 18 months. Then every 6 until five years and then if I'm still here, yearly for life. If my first two scans are clear then a stoma reversal can be done early next summer. That will involve fully opening me up again rather than keyhole so they can double check there is nothing nasty lurking around.

We then walked back to Waterloo via Covent Garden for lunch and a spot of Christmas shopping. Surprised myself by how well I managed the walk but was then exhausted by the time we got home.

Today I shall start working my way through a pile of clothing alterations and mendings.

Thank you for the update, @Earlandmrsgrey. Sending lots of love and fortitude. Lack of clarity is a bugger; but you seem to be doing a great job of enjoying the now in all its wonderful weirdness and at the end of the day that's all we all have. This is A LOT to process. I hope you are giving yourself grace; and know you still have many anonymous women cheering you on.

@Earlandmrsgrey I'm someone who appreciates certainty and I would feel similarly about 'intermediate'. No prizes in either direction and just wait and see.

How do you feel about the prospect of stoma reversal? I suppose it's early days with living with a stoma, so a lot of uncertainty there, too, about whether to go through another big surgery.

One day at a time.

I can understand how you feel. Really hoping you get some better news soon.

Next time you're back there, there's a Lidl with a decent bakery section a 4 minute walk from the centre. Priorities! Always good to treat yourself after the tension of a hospital visit.

Why not leave it 3 months to the next scan before any major decisions. Selling the house and moving to somewhere smaller, not giving up the job yet but spending more time on what makes you happiest might be one intermediate position.

Hope the gp has arranged everything you need now.

Wishing you all the best, both for your health and the uncertainty that goes with it. I also value certainty, even over smaller things and find the lack of it on a spectrum from annoying to excruciating, depending on the context. That said, it might be that as @anyolddinosaur says, if your prognosis is somewhere in the middle, your response could be like that too, looking towards downsizing (somewhere smaller might be more manageable for someone with uncertain health) but staying at work for the time being - financial security is always comforting, and even more so when you don't know what the next lot of tests and scans might throw at you.

I too would be unsure about the phrase intermediate risk. Just wondering if there is an option of chemo to turn the intermediate risk into low risk?

Any chance of early retirement and downsizing? DH and I did this after my breast cancer - less stress has been great for my ongoing good health.

Lots to process and think about OP so sending you positive vibes, peace and hugs.

I would wait before your next 2 scans OP to make any decisions -

I agree. You might well move into low risk/category by then xxx

You sound as if you’re recovering well
@Earlandmrsgrey but I can imagine how that neither here nor there prognosis has left you feeling in limbo.

I guess not rushing into anything is the way forward for now. Hopefully the right path will become clearer before too long xx

@Muchtoomuchtodohas expressed my thoughts so much more eloquently than I would have managed, but I totally agree. Limbo is hard too. I went through a different, but protracted limbo period a few years ago and found it was helpful to focus on short term goals and nice things. So when it was hard to plan holidays for example, I made sure to plan some proper days out and do things that brought me pleasure. Sending unmumnetty hugs.

Thanks for the update @Earlandmrsgrey . I hope you're still feeling the waves of positivity and warmth from us lot.
When you feel ready to think about work, do just give a passing thought to reducing your hours and becoming a writer. You have a most engaging style and an original way of thinking which has shone through despite the grimness you have faced.