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’m a bit flabbergasted that following the protracted diagnosis and huge surgery that the next step is ‘wait and see’. I know it’s better than bad news but I can totally understand that you feel in limbo somewhat.

What would you like to do next? Does the appeal of a smaller house and change of pace appeal? Perhaps working shorter hours?

I'm glad it's not bad news. Was they able to say about clear margins or how agressive the tumor was? I'm a scientist and I don't think I'd feel happy with a 'mid' answer either. Why no chemo?

I need absolutes and black and white. Which of course we can never have. See if you can all the facts you possibly can and it might be easier to digest the 'what next?' Maybe plan a mid point 'master plan' to match the news? Like you will go part time until x years and travel with the freed up time. Or you just sit and do sod all once a week.

Is amazing that they can reverse the stoma! That will be good.

Aah good to see the news is somewhere in the middle. It’s actually the best place to plan from really - hope that you get some time to explore what comes next and to think about what you want. Something we should all do really.

Jelly babies are great to loosen the output! xxxx

How are you doing @Earlandmrsgrey? 🥰❤️

Yes @Earlandmrsgrey - have been thinking of you too and hoping you’re keeping on track and feeling ok ❤️

Physically I'm on an up...rarely any pain, fully mobile and walking up to about 3 miles. Hoping to get permission to go back to pilates soon. Mentally is another story. I guess things are finally catching up with me. Not so much about the past but more about the uncertainty of the future. It's a rare cancer (and therefore not much research), it can very easily come back, it doesn't respond to chemo or radio and there are only so many times they can go in and carve bits of me up. Five year survival is about 50%. However, as I said, it's a rare cancer and therefore not much data or research and the real statistics may be much better than that. I just don't know and I'm not great with not knowing.

My first scan is booked for early January and I will be going up to London with a good friend. Not sure how we'll spend the rest of our day but it will involve a lot of fun and some good food.

I've started driving again which has given me some freedom back. Went to watch a ballet screening at the cinema last week (La fille mal gardee). I'm not a ballet aficionado or anything but I thoroughly enjoyed it. Also, if you've never been to an Everyman cinema before then you really should...armchairs and waitress service, really makes up for not seeing the actual live performance. Nutcracker next month!

Bit of an issue at the GP surgery yesterday. NHS miscommunication strikes again. I've been booked in for a covid jab for the last 5 weeks. Get there for my appointment yesterday to be told I don't qualify....they booked it, they kept sending me reminders. Then told that I should be grateful for not being more immunocompromised than I already am by not having chemo or radio. See above for reasons why that comment might have pissed me off...

Fortunately we had a night out planned. My first real test around lots of people and their germs, and with my stoma in a public place. My bag mostly fills up in an evening and I've not had to empty/change in a public place yet. Tapas restaurant with DH and another couple and then on to see Russell Howard at the theatre. Laughed so much I thought my scars were going to burst open. Really, really needed a laugh.

Wow, that was a bit of a word splurge. I really should start getting on with the rest of the day. Another cup of coffee and then to arrange that trip to Pembrokeshire!

Wonderful to hear such a positive update OP. It must feel great to have some normality back. Sending hugs to you. Pembrokeshire is beautiful, I loved Solva, perhaps its time I booked another trip!

That sounds so positive. Excellent that you're socialising 🙂

Laughter is amazing. More of that, please.

I dislike not knowing too @Earlandmrsgrey. It's not good for me and for you too. However it might very well be that what you don't know, because the cancer is rare, is positive. I'll hold onto that for you. Sending so much love ❤️

I'm so glad to hear lots of positivity.
I get your uncertainty regarding your brand of cancer.
My feelings are just look forward and enjoy what there is.... of course that's until I get a pain somewhere I've not had one before... then I'm a wreck 🙃
Like I said I get it....
You are truly amazing.
Xx

Thank you for the update. To help you frame things more positively, when I was in training at the London Hospital, my mother was also diagnosed with a really rare tumour, less than 20 worldwide since nice it was named in the 1920s.

Naturally I tried to look it up in the library but could only find it in one book and that was next to useless. I was working in clinic with an Oral & Maxillo-Facial surgeon who was useless with his hands but an amazing diagnostician, we talked about it… he went off and talked to colleagues and came back to me and gave me the best advice, “Nurse Lattelady, it is incredibly rare, it is one of those that they know very little about and I can see in one text book, it says the patient may or may not die… well frankly that is the same for all of us, isn’t it. Tell your mum to live life to the full.”

And she did, 20 years later in her mid 80s she died. So my point is, do what you are doing now, take life by the scruff of its scrawny neck and do just what you want to do and enjoy of much of it as you can. Here is to the next 20 years, at least!

What a wonderful post 🥰

I'm surprised you don't qualify for the Covid jab. I think maybe the criteria are so vague now that they won't be applied uniformly - my Parkinson's 'earned' me the vaccination so I guess you are healthier than me (and I'm pretty healthy apart from PD).

Agree with you about Everyman cinemas. Even their (mixed) popcorn is lovely, though I don't know if popcorn is stoma-friendly.

None of us will come out of this alive but we can make the most of what we have. Good to see you getting out.

The criteria for covid jabs were really tightened this year. We have paid for them. Prices vary - if this is near you it's a cheaper place https://www.peakpharmacy.co.uk/services/private-services

with £90-£100 more usual.

Glad things are going as well as possible.

While you're in London it's worth popping into the Bow Street Museum and asking about when they arrested the pony from La Fille Mal Gardee. Museum is opposite the Opera House.

A marvellous update - what a toughie you are to be back to life and laughter so quickly.

You would be carved from granite if the uncertainty didn’t leave its prints. Hope everything keeps getting easier.

@Earlandmrsgrey, every one of your posts lights up my day. Thank you.

Morbid curiosity... Did they show you Gary after the eviction? Did you keep him in a jar or asked him to be thrown down the hospital sewers, together with slashed appendices and dried-up foreskins?

No they didn't....didn't even weigh him but one surgeon guessed at about 3kg! Disappointed in them!!!! I expect he was eventually incinerated, along with my kidney and spleen! Now I'm left wondering whether some sort of energy re-capture from burning body parts could help fund the heating that the NHS insist on having on full blast during warmer months.

@Here4the I'm intrigued but unfortunately the museum is closed on scan day.

I'm so glad to hear lots of positivity.
I get your uncertainty regarding your brand of cancer.
My feelings are just look forward and enjoy what there is.... of course that's until I get a pain somewhere I've not had one before... then I'm a wreck 🙃
Like I said I get it....
You are truly amazing.
Xx

@Earlandmrsgrey there used to be an amazing specimens museum at addenbrookes
I'm a nurse and went on a study day there and was more than happy to eat my lunch there, however the non medical attendees probably less so!

3kg! Blimey, Gary was a whopper. Well done for having him evicted.

I would imagine adrenaline and feeling dreadful kept you going initially but now you are having to ‘live’ more and I’m guessing that’s when the mental impact of what you have been through hits and lack of certainty is awful. I don’t have any good advice I don’t think, but I’m sure others will. Only thing I can think of is take any and all help offered to help you cope and hopefully something will click with you.

Wishing and willing you all the best x. We’ll be here if you want to chat x

Checking how you are doing. Glad you are cheerful and positive.
xx

Lovely to hear your update @Earlandmrsgrey I’m very impressed that you’re driving again already - that gives you so much more independence.

Are you in snowy Pembrokeshire this week? xx