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.

So, if it's not the massive tumour in my abdomen that is trying to kill me it's the radiologists. He removed the cannula and patched me up and walked my back down the corridor to the changing room. How neither of us noticed the blood bath that I was leaving in my wake is beyond me. Weirdly I found the whole experience really funny! It eventually stopped and I've been home all day, still laughing about it. Some sort of Gallow's humour I guess. Oh well, that's another day done and another day closer to the MDT.

Christ almighty OP!!! Sounds like a scene from Demi Moore's The Substance.

Glad you have your humour intact. I hope every hour that passes brings you one step closer to healing 💗

Was the blood bath coming from where he'd removed the cannula?

Yes. I wonder if it's because it was only a few days since the last cannula was in. I've had some awful bruising after blood tests before when half my arm would be affected. I was once told that although my veins look good they have a habit of moving.

I had this when I was pregnant because they had essentially forgotten to put the wee cap on the cannula. Very scary and lots of blood but thankfully easy fixed.

Hope you’re keeping as well as you can be

Just had a call from the hospital regarding yesterday's scan, lungs are clear which is great but they happened to find a 3cm lump in my left breast. That's all I need.

Remember most breast lumps (60-90%) are benign. At least it's been found and they will now be investigating you swiftly.

Jeez
You really are going through it.
Hold on.....its going to be absolutely fine in the end. xxx

Well, after this at least you will know not a bit of you has gone unexamined. You’ll have been thoroughly scrutinised.

I’m so sorry @Earlandmrsgrey, this must be unbearably stressful for you. Big (gentle) hug.

Blimey- you’ve a lot going on there @Earlandmrsgrey. it sounds like they are doing their best to find out what’s going on but it must be agonising for you One day at a time is all you can do when you feel everything is in someone else’s hands.

Hi @Earlandmrsgrey - still thinking of you. When do you get the outcome from the MDT?

Not until at least next Monday, probably Tuesday.

@Earlandmrsgrey the added stress on top of an already stressful situation.

My mother was told by a nurse last year “try and keep your sense of humour” when she was having a particularly difficult time (funnily enough with a cannula). It seemed like add advice but as she’s still battling cancer I get it now. My mother’s ability to laugh or roll her eyes has been amazing.

I hope the week goes quickly for you, so that you know what you are facing and what the plan is.

Sewing Bee is about to start. It's been a week since I started this thread. Another week to go and I might get a plan for the GIST. Hopefully it won't be long until I get a breast clinic referral.

Thanks for all the support and the gentle hugs and the handholds. It really helps x

Sewing Bee! 🌞

I was going to ask, OP, how you are managing to keep putting one foot in front of the other and staying sane between now and next week. But that sounds a very healthy way of taking care of yourself. I'm not sure how I'd cope, I'd probably be on triple vodkas for breakfast.

Sewing bee! Yay. Gentle hugs from me, a year into my bc treatment. Hoping you’ve soon got a plan and all is dealable wit.

Oh bless you. The waiting is just the worst. I am Sewing Bee-ing too. It’s good therapy.

The time between the initial diagnosis and the scans and other tests and the MDT can be enough to shred your nerves, even if you are going through it second hand. In 2017, my DH had a colo-rectal cancer diagnosis nine days before Christmas. He was booked in for the tests very quickly, but we had to wait till the New Year for his first meeting with the surgeon and weren't told till then whether it had metastasised. (It hadn't.) That's when we heard about the MDT meeting; or rather I did. DH had some idea about it through work. The MDT meeting is when your insides have a starring role in a PowerPoint presentation and surgeons, oncologists, colo-rectal nurses, chemo nurses etc discuss your treatment plan. It's very important, because it helps those looking after you to make sure they have the right strategy, but waiting for it all to happen before your treatment starts is one of the low points for many people. DH is fine now, but the process of getting him there was arduous.

I hope you don't have long to wait before things get underway for you @Earlandmrsgrey and that your treatment is as smooth and trouble-free as it can be.

@Tortielady I can imagine how frightening that must have been. I've had a few health scares and although I remained outwardly calm, my natural catastrophising tendencies did me no favours in populating my mental landscape 🫣 I'm so glad your DH is fine now, let's hope for a similar outcome for OP ❤️‍🩹

Not to be too Pollyanna-ish about a really difficult and nerve-shredding situation, @Earlandmrsgrey but I feel it's worth cheering that your GIST isn't pancreatic. Most other things can be treated more effectively and with better outcomes than that.
Sending you v best wishes for the coming week and beyond 💐

How are you @Earlandmrsgrey ? I know you have to wait a few more days for the MDT (seems a long time to me since you first posted about it, so I can only imagine how it feels to you). Do you have adequate pain relief now while you wait? X

I'm still only taking paracetamol. The problem with some stronger meds is that they bug me up and then I end up in more pain when it has to go through the squashed parts of my digestive system.

Cried a lot yesterday whilst visiting a friend. It's difficult to try and feel any positivity when you have the darkness of a sarcoma on one shoulder and the possible darkness of a carcinoma on the other. We did have some laughs though.

Today some slow stitching kits have arrived. No more Mumsnet and dark scandi dramas for me! Well that's the idea. I can use a sewing machine but I think the art of a needle and thread may be too much.

Thinking of you, lovely 🥰

Hang in there OP. I'll be thinking of you next week and wishing you all the best.