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.

I hope all goes well with the MDT tomorrow and they come up with a cohesive plan, including making you more comfortable.

All the very best, will be thinking of you x

Sending good vibes to you for tomorrow.

Sorry it’s today isn’t it? I hope it has gone well for you.

Thinking of you, OP

oh i'm so sorry. My Poor dad also had this cruel disease...i hope there is an outcome very soon where they can help you !

I'm so very angry. MDT today but no-one calls me to say what happens next. In the end I log on to the NHS app to see that I am being referred on to UCH. I don't understand why they didn't do this as soon as they knew it was a sarcoma as UCH has the best sarcoma centre in the country. Looking at their website they do MDTs on Fridays and call people in the following week. This will be during the tube strike.

I'm now in such pain and it is so heavy that I cannot lie down as it just crushes my digestive system and I end up with the most awful cramps and kidney pain. I'm going to make a nest on the sofa tonight.

I feel totally abandoned by the NHS and no, I still don't have a breast clinic referral either.

My husband has managed to get through to someone in the hospital and they've said they'll call me back. Otherwise I have a GP appointment on Wednesday morning.

So sorry OP. I’m going through it with the NHS as well at the moment, though in no way comparable to your situation. It really is a shambles right now. I’m thinking of you and I know lots of other people are too.

OP I’m angry on your behalf. A gentle hand hold from a random stranger on the internet. Hope your nest delivers some physical relief.

I’m so sorry, OP.

i am furious on your behalf. PLEASE go to A AND E if the pain gets bad ... 🙁❤️🙁

Oh God, after that wait.

Maybe just start calling UCH?

I've only just seen this thread. I'm sorry you're having to go through such an awful time. I really hope that you're seen very soon, and treatment can begin. This no-man's-land period is the worst.

Oh hell - as if you did not have enough on your plate, without inefficiencies and insensitivities on the part of the NHS. They just cannot get communication right. It happens all the time.

I have had some serious and highly expensive heart interventions - and I am grateful for these, and they are done well. But the communication is useless. No attempt to help me understand what the future might hold or what I can safely do. And getting to those treatments was a tortuous and labyrinthine process that left me weak and desperate.

The NHS seems to be good at the technical stuff, but hopeless at communication.

I am sorry that the help is lacking in this regard. All I can say is that when you eventually get where you need to be they come up trumps in my experience. But why all this misery in the run-up?

Thinking of you EarlandMrsGrey. I wish you peace, strength and patience. You seem like a really nice person and no one deserves to go through this. I hope you can find some pain relief soon.

Finally been called back and spoken to a kind nurse who was very apologetic and somewhat shocked that no one had been in touch. She did remind me that I had a telephone appointment booked in for Friday...which, of course was news to me! She isn't certain but is hopeful that that this is scheduled to take place after the UCH MDT.

She has also been in touch with the palliative care team to advise on pain management. Hopefully they will see me tomorrow. The breast team is also aware that I still need to be seen.

DH busy nest building.

I really hope you manage to get a decent nights sleep.

Hoping you get help from the team tomorrow. Hopefully you've been referred to someone better at communication.

When you have the mental capacity, I’d live to know more about slow stitching. I haven’t heard of it but it sounds good!

I'm so sorry OP. If I were you I'd get yourself down to UCH A&E to get the pain under control.

So sorry to hear you are in pain and having issues with the hospital communications. This really isn’t good enough. I hope you can get some relief and a clear plan very soon. In the meantime, it is Sewing Bee day so hopefully you will feel well enough to tune in tonight for some TV therapy.

I've seen the palliative care team today for pain management (although they stress that at the moment I am not having palliative care). Just need the pharmacy that is attached to my GP surgery (rural practice) to actually prescribe it all. Knowing them it won't be ready today but my nest worked quite well last night.

The palliative care team were lovely, as expected. I've met many people over the years who have worked in palliative care and they have always been the most wonderful people. They explained the CT scans to me as they are not available on my NHS app and assure me that the referral is with the Sarcoma team at UCH. I've also ordered a massive wedge pillow system from Amazon which should arrive tomorrow.

In other news my neighbour had tree surgeons round and as she has no side access to her garden we have a gate in the fence. The lads were going through our garden and came across a sheep skull that we happen to have. They were having almost as much fun with it my youngest has when he found it. He was about 8 or 9 and lugged it for about 3 miles along a very wet and windy swept Pembrokeshire Coastal path! Happy, happy memories. No reason for that story but it did make me laugh and that can only be good for me.

Thank goodness for nests, and for husbands who make them, 🌞 and for happy sheep-skull Pembrokeshire memories!

Thinking of you OP 💗

Ooh do let me know about the wedge pillow. Thinking of getting one for me.

Thinking of you OP, so glad for you that you have a lovely caring DH to make a nest for you and wrap you up. Everything crossed for more positive updates for you.