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.

Well at least some attempt at pain relief is being made, lets hope it works. A&e can be pretty hopeless at dealing with severe pain, I wouldnt suggest anyone try that route. If you have any idea where to get illegal drugs you'd be better going there!

Op just want to say I'm sorry you're going through this and your sense of humor is admirable

Still here hand holding.
The sheep skull was making me laugh. My daughter was asking why we didn't have one. Because apparently it's the norm. Sorry the experience has been so crap.
Docusate instead of other stool softeners. X3 x 3 a day I think. Much more gentle. Presume you have omeprazole already which will help with any 'not going down' feeling. X

Sheep skull in your garden is the norm! We had one when my kids were littlies. Also carried home after a walk.

Good News:
My 3 piece wedge pillow set arrived yesterday. I love the unwrapping part...how does such a small parcel become so massive with just a few snips to some layers of plastic?! It truly is wondrous, so many different combinations to try out. It doesn't half stink though...will probably give me cancer of the something else!

Took possession of a huge bag of meds yesterday as well. Morphine is definitely making me feel woozy but it helps enormously. I've been given CosmoCol to keep everything moving. Tastes of slime with a hint of capri-sun. My youngest had a little sing song and dance and wondered if it also came in pina colada flavour!

Slept ok and got about 5 hours then had a bit of oramorph and slept for another 4.

Breast Clinic appointment booked for Monday afternoon.

Bad News:

I saw my GP yesterday and he suggested I chase UCHL to see how long it will be before I get seen. I found a number for them and...they haven't received a referral and their MDT meetings for my kind of sarcoma are on Wednesdays. Therefore I have to wait at least another week. She said she would try and chase the referral on my behalf but due to living semi rurally and having crap signal (especially during biblical style rain storms) I didn't actually have enough signal when she called back. I've left her a message today. She also was surprised that the referral was going to them as she thinks it should be Royal Marsden due to the sarcoma type and my location.

I also tried to see what my private health insurance could do but there might be an issue with using Royal Marsden as it is outside the usual T's and C's for distance within the policy wording. However as it is a specialist centre there may be some scope. Then my phone cut out due to aforementioned Biblical rain. I'll call them again later as well.

Might finish my slow stitching project today.

Thanks everyone xx

I'm glad the medication is helping and that you're seeing breast soon. Perhaps you or your DH could call the hospital you're currently at, the department or your constantly secretary and ask them to do it, like just push them and mention the Wednesday issue already. I know the GP will push but it can help from both sides.

I'd love to see your sowing, I can't do any sowing but think it actually might be good to learn, as it's a good life skill. I hope you have a fun time with it.

Aaaaggggghhhhh I read the "good news" bit and hoped for more, but I'm glad you are taking pleasure in life's small mercies.

I wish I could wave a wand to give you a time machine for finding out more and getting something about it.

Massive hugs OP 💗

Huge hugs to you, OP.

I too wouod love to see pics of your stitching project

@Earlandmrsgrey Im so sorry for what you are going through. Your family history makes it even more unfair to you to be on this position.

Your posting style is beautiful, you are managing to weave great pain, caring, beauty and humour into your posts at a time of deep personal stress. It speaks volumes to your character.

Wishing you the very best,

I've been thinking of you op, sorry you're having such a a run around. Healthcare is increasingly a fight to access and I hope your journey runs smoother now. I know the palliative team you have seen I think, they're lovely. Take care. We're all cheering you on.

A friend of mine was treated privately for cancer at the Marsden. They really are very good. Sadly, she died but they did everything they could for her.

The bad news is that chemo is murderously expensive and health insurance companies are horribly good at wriggling out of paying for it. The good news is that they can be cajoled, guilted and threatened into paying.

Firstly I would ring your insurers and push hard. Secondly I would ring the Marsden directly and explain your circumstances and what insurance they have. They may well help you make your case.

The main advantage of private is time as everything will be coordinated quickly for you. The actual treatment will be the same. Quite humorously, my friend told me that the private and NHS treatments were actually given in the same room. The only difference is that the private patients got a comfy armchair and regularly offered food and drink.

But time really is of the essence, so I would push the private hard, or get your partner if you have one to do it, if you are not up to it. (In addition, sometimes you can get rare super expensive drugs privately that haven’t been approved by NICE).

I think I might be done but still have a few sequins left.

That is absolutely owltastic! Keep it up. They will be lovely keepsakes for the family.

Wow that's is a lovely owl, definitely keep it. You really are talented.

That’s so pretty!

Just wanted to send support op! Sorry I have no advice to offer. Came across your thread today and just wanted to say we had the same experience in the NHS re: poor communication about twenty years ago when my dad died. It’s always been shambolic.

Why is this I wonder?

If you can be seen at the Royal Marden though, the care there is very good.

💐💐💐

Hello @Earlandmrsgrey, sending love from a stranger. Thanks for sharing your owl 🦉

That's a beautiful owl.

Absolutely loving the owl and glad to hear at least that you have stuff now to make you feel more comfortable.

So sorry to hear you are having the run around. As others have said, totally shambolic, unacceptable and symptoms of a totally broken service.

From experience, once your case gets into the right hands, things will probably start happening really quickly. It’s just getting them into the right hands that’s the challenge. The MDT meeting is the key. So rubbish though that you are having to wait.

Finally I've had a decent talk with a Senior Consultant. He was exceedingly apologetic regarding the treatment I have received so far. He has recently returned from A/L and will be bringing it up with the whole team.

He will be doubly checking that my referral has been made correctly and received in good time for the next MDT. He is unsure about the site of the tumour and as such this might be classified as an E-GIST. These are known to have poorer outcomes and are much more likely to metastasise. However because of their rarity the literature is sparse and a lot of the reports and case studies are prior to new and experimental drug developments. (I think it is 0.26% of all UK cancers are GISTs and 5% of GISTs are E-GISTs). I guess I will become a Case Study, as a healthcare scientist this is actually pretty cool....just want to be one that survives instead of one that dies. Hopefully they will be able to determine which medication it might respond to.

I just have to wait. Going private is unlikely to speed it up at all as it is still going to have to go through the same very small group of experts at a MDT.

Next steps:
BBQ with good friend tomorrow, might try to make an apple/pear cake today as our apple trees and neighbours pear trees have gone crazy this year.

Teach DH how to put the bottom sheet on the bed properly...he chose the worlds heaviest mattress and he can deal with it from now on!

Plan next sewing project. I have lots of blue fabrics and am thinking hydrangea.

Then Breast Clinic on Monday. Determined not to worry about this and grey rock the little carcinoma demon sitting on my left shoulder.

Happy Weekend everyone xx

So pleased you finally had a sensible and helpful update and glad to hear you are remaining your pragmatic self and retaining your sense of humour. Look forward to seeing the hydrangea project

Enjoy your weekend too

Go go go @Earlandmrsgrey. Really glad you had a decent conversation and have a sense of purposeful movement in terms of your care. Cake sounds amazing. Hang in there. You have 1,000s of unknown women cheering you on. Have a good weekend. x

Enjoy your (hopefully) sunny weekend!