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.

Research has shown, recovery improves when you are back at home... and let's be honest, there is nothing like your own bed and bathroom. Hope that your recovery now continues apace!

Welcome home, and thank you for sharing the updates with us.
Now's the time to rest, rest, rest.

Glad you are home and hope you can get plenty of rest and make use of that big pillow you ordered and it doesn't give you cancer of something else (I am still laughing about that remark several weeks later).

Hope you had a good night and now have peace and quiet to recover.

I’m so pleased you’re home. Hope you have made yourself a nest and are as comfortable as you can be. X

Just to say I also had a tumour on the tail of my pancreas and had it surgically removed. That was 14 years ago there are many types of tumour and many treatments

Sending my best @Earlandmrsgrey and hope you sleep well in your own bed. I highly recommend https://www.amazon.co.uk/Vaseline-Expert-Care-Healing-Cream/dp/B09QJ2SYLQ it is the best on my skin graft (and the rest of me)

Best of luck, OP

Today was meant to be my follow up to let me know whether all the margins were clear and the likelihood of reoccurrence. Unfortunately it was cancelled just as we were walking to the car. Results aren't back yet. To be honest, I'm kind of relieved. I wasn't looking forward to the journey and the jostle of Waterloo. I'm also happy to live in blissful ignorance for a little while longer and regain some more strength. Even if it is aggressive they're not going to do anything until I reach 3 months post surgery. It will be another 3/4 weeks wait as my Consultant will be on leave for the next two. Hopefully we can at least use the open return portion of our train tickets!!!

Otherwise apart from all that recovery is slow. I can't seem to increase my appetite but apparently that is normal for the first 4-6 weeks. My new favourite food is tuna mayo on potato waffles with a massive dollop of ketchup for extra calories. I feel like a fussy kid again.

DS2 popped in the other night ( he's at uni), he had basically stuck his fingers in his ears, not listened and run away from the whole situation. He gave me a lovely hug and said I looked like shit! I think he's finally processed everything which is good. He then stole a saucepan and a spatula and disappeared again...bloody students! He is ND and a terrible communicator but a joy to be around as he always makes me laugh.

The house is also full of walnuts. Boxes and boxes of them. The neighbours tree is laden with them and I can hear them all night bouncing off the shed roof. DH hates food waste and promises to make walnut butter. Anyone got an industrial sized walnut sheller?!

Oh OP I am sorry it was cancelled, but at least you were walking to your car and not at Waterloo. What a good plan to focus on recovery over the next couple of months. Take care, get plenty of rest, and enjoy your bizarre but delightful feasts 💗

A small thing, but you can normally get a refund for unused train tickets, minus an admin fee.
https://www.southwesternrailway.com/contact-and-help/train-ticket-refunds (presume it was SWR if Waterloo)

Try for the refund - if you explain the circumstances you should get one.

This has been a "mast" year apparently - an excess of fruit and nuts. if you have a local food bank or food cupboard anywhere they may be willing to take walnuts. They'll last a few months in a dry place or a year in the freezer. Didnt realise you're supposed to soak them in water to remove the bitterness.

At least it's a bit longer to recover before the train journey.

You can pickle walnuts - they are delicious. You can make walnut pesto too. Yum.

Good luck with recovery

@Earlandmrsgrey aside from your extensive surgery, the bowel is a very fussy organ and doesn't like being interfered with. It's likely having a bit of a tantrum which is bound to affect your appetite. You're also using huge amounts of calories on healing. Can you stomach high energy smoothies/milkshakes? DD1 had an eating disorder and I was able to tweak a pancake recipe to get 1500 calories into 3 small pancakes, so if anything like that would help, let me know and I'll chuck you the recipe.

If ever there was a time to be fussy, it's now. Your body is telling you not to mess it about with things that are hard to digest and your appetite can't be bothered with things that are complicated, or, as a friend of mine put it in a very different context, (we were looking at a restaurant menu) "has too much going on with it." I've nothing like what you have to put up with, but when I'm not well, nothing makes me happier than cheese and biscuits/crackers or an egg and cress sandwich, so I know what she's driving at.

Re walnuts. They are great once they're out of their shells. Many years ago, we made the mistake of buying a bag of unshelled nuts and a nutcracker for Christmas. We were picking bits of nutshell out of the carpet for weeks afterwards and IIRC, the walnuts were the worst. Never again!

The return train tickets are probably only valid for 28 days so might be better to investigate a refund? Alternatively, offer for sale on local FB groups (if you can be bothered with the hassle).
Good luck with the walnuts.

Nothing wrong with a potato waffle OP! Good to hear an update from you. Still thinking about you and your family. Hope your appetite improves soon. Good luck shelling all those walnuts! I have two oaks in my garden and the acorns this year are wild! Last time they were this big we had a very cold winter - so who knows what Mother Nature is aware of?! I'd much rather have walnuts 😅

If you haven’t applied on line for a dissabled rail pass do it when u get time as it will save you some money. Same with pip. I’m so pleased to hear your up dates. Cancer is just so bloody draining. I was expecting my appointment today as well but got admitted to an and e and asked for a phone appt but it never came. Like you it means I can ignore it for abit longer x

Re the train journey - try Passenger Assistance. I have mobility issues and they are brilliant on the very odd occasion I want to go to Waterloo. (SW Railway is my line).

I phone them up a couple of hours before my train leaves and tell them I need assistance because of mobility and tell them which train I'm leaving on and which train I anticipate getting back on.

I get to my local train station and they have a manual wheelchair and a porter waiting there for me. They wheel me up the platform and into the carriage where the wheelchair bays are and I sit there until Waterloo.

Once at Waterloo, I wait whilst the melee gets off and then get into a little buggy thing (with my companion if I have one) that's waiting for me. I'm then driven in the buggy to the taxi rank.

Similarly, on the way back, I get to the Passenger Assist kiosk (just inside from the taxi rank) at Waterloo and before the general public know which platform my train is leaving from, I'm whisked back down the appropriate platform in the buggy and am in my seat before the general hoi polloi has even got through the gates...

It really makes the journeys much less stressful!

Hi. Hope you can get a refund.

The healing journey will take time, and your appetite will return to normal soon. You are on the path to recovery.

Aww… Nice of your son to give you a hug, he might need more stuff.

Golly, boxes and boxes of walnuts? I wonder how long you can keep them. Maybe donate some to charity and keep some. Nut roasts, walnut cakes?
I hope you find something for your walnuts.
Take care x

If you booked on the Trainline you can submit the refund request there. If it's an open return the whole ticket may be refundable.

There is a passenger assistance app you can download for booking assistance. They can whizz you about in a buggy, very handy.

We managed to get a refund (minus £5). Thanks everyone. I'm hoping that I won't need passenger assist when we next go up. I managed a walk around the local playing field yesterday, well, with the help of 3 benches anyway! Going to try again today.

Now to deal with the GP surgery. Why are they so ineffective? My discharge letter is full of things for them to do. Post splenectomy vaccines, long term antibiotic cover, platelets blood test....Why am I having to battle with them to get the vaccines done? They keep asking ME which ones I need, it's on the discharge letter for ffs and the national guidelines are easily Googleable! It's as if they won't take any responsibility. Then there's the blood test; they don't know what to do if the results are abnormal! I would have thought that was easy. Remain on aspirin until platelets come down and review again? I've put in a request for the antibiotics, let's hope they come good as I've only got a few days supply left.

Later I shall ring the local stoma team. I was told they would contact me the day after discharge....as if!!! Fortunately Medilink seem to be on the ball and have already sent me my first box of supplies.

It's all so frustrating.

One full wheelbarrow of walnuts has been offered up to the local villagers. They've now nearly all gone. We've still got boxes full but I've banned DH from keeping anymore!

Honestly, OP, I think you're an absolute superstar. Sending lots of love ❤️

Be careful no-one takes the wheelbarrow. :) It's nice to share, especially in the current financial crisis when someone may be really glad of free food.

Hi OP, it sounds like organising all your medical care is a full time job for you! Just to say I had a splenectomy 3 years ago, so please ask if you have any questions.
My platelets remained very high post surgery. Was kept on aspirin for a few weeks, but then another consultant said that wasn’t needed and I shouldn’t have been given them! (They are still high but have come down over time). I take antibiotics daily - penicillin is the go to one but I’m allergic. Was on Levofloxacin but switched to cefalaxin as it gave me awful joint pain. Get your vaccines and you will need one booster in 5 years.
Wishing you all the best for your continued health and recovery in fighting this, you’re smashing it with your amazing attitude!