Thankyou, they are just suggesting palliative care... So we've got to just go with that... There's so much to sort out practically as Mum lives on her own... I'm guessing the hospital will hopefully give me some info and advice... Actually dreading her coming out in some ways, she feels "safe" in hospital, but her discharge is (I think) pretty imminent... And I'm due back at work on the 31st Aug (I teach full time and can't afford to give up work)... Deciding what to do... It's overwhelming... Just doing the phone calls to family and Mum's close friends is bad enough (Mum's very private, but wants closest friends to now know, she can't bear the "C" word, but refers to "it" as her condition... (too painful with my dad having died from "it" - though a different type- 6 years ago)... Wondering whether it's worth speaking to Macmillan etc for advice /support too? 

It's definitely worth reaching out for support wherever you can, in my view. 

We all handle trauma in our own way, & your Mother is doing it in a way which makes most sense to her. 

Bless her heart. 

For me I heard my diagnosis/prognois (which wasn't great, I might add), had the 12 hour op, & then discontinued the three monthly follow-up blood tests & scans. I'm also making up my own prognosis. I much prefer my own version of how my life will go from here. 

I also refused the 6 months of chemo they wanted me to have.

This is just me & it's not a recommendation for anyone else. 

How often do we give our power over to a guy or woman in a white coat?  I say this with respect to those who devote their lives to this work as well. 

The NHS staff were all AMAZING with me & my recovery in hospital! I'm forever grateful to them. 

However, I was told at school by teachers I'd never amount to anything. I'm pleased I didn't believe them or take it on as my truth. 

My surgeon told me I'll likely not make it past the two year point. I aim to prove him wrong. 

I do my own research on things & sift out the wheat from the chaff. 

I won't go any further on this topic. 

Wishing you a smooth road ahead & keep leaning on others for support when you need it. X 



 

Thankyou for taking the time to reply... There don't seem many who have this type... Compared to the others... I guess it's just a matter of taking one day at a time

Yes it's a relatively rare type indeed. 
Try & be as present as you can with your Mother & be with her in this part of her journey. 
 - & go easy on yourself too... 
Much love. :) 
 

I had the Whipple procedure in October 2018 for ampullary adenocarcinoma  in London, by the most wonderful surgeon. Prior to the surgery, after a very detailed and thorough consultation, he just said 'small cancer, big surgery'. After the surgery I had 2 weeks in hospital. Having had great care, I returned home and by Christmas I was well on the way to full recovery. At the beginning of 2019 I had chemo and now the oncologist checks up on me every few months. I take 12 ! Creon tablets a day and apart from going to the loo rather frequently I feel fine. I'm posting this to show others that there is hope and to be optimistic about the future. I do think a positive frame of mind helps. So good luck to everyone.

Hi Ellia,

Thank you for your response. It does help me too, not least to see someone else with the exact same diagnosis & op. 

My journey was full of confusion & three different diagnosis & prognosis. I wish I'd received the same reassurance from my surgeon as you did. 

Anyway, I agree a positive outlook is most beneficial in these matters. 

As a point of interest, I was told to take 7 CREON per day. I find it's working OK for me in the main. 

We're still here to tell the tale which is the main thing. I wish you continued health & abundance in all areas of your life. :) 

 

That's so tough to endure & I'm so sorry to hear of this. 

Your head must be all over the place! There's no dressing this situation up. It's awful & then some! 

My Dad is also terminally ill & coming near to the end of his journey. Cancer SUCKS!!! He's still telling the doctors his (innapropriate) jokes though & hasn't lost his sense of humour. 

You know what though? This experience (including my own cancer journey) has opened me wide open to loving others, & myself. I'm no longer afraid of death - or more importantly - I'm open to living more whilst I am here! 

I'm sending you my wamest wishes at this difficult time. Much love. X



 

It really does change your perspective doesn't it?!! 

Hi

Just found this site and wanted to share my experience which might give hope to people facing a similar situation. 

I was 58 and had none of the classic symptoms for pancreatic cancer. I was diagnosed with a tumour in February 2020 but only found out it was ampullary cancer after Whipple surgery in March and the biopsy result in May. I am lucky that the tumour was removed and lymph nodes were clear. I opted not to have chemo having been told there were only 2 studies, one showing positive results and the other not. I am almost back to how I was, take Creon with every meal and my diet is practically back to normal. I generally feel positive about my future. I was told there are no tests I can have to check if all is well. That was a surprise and a bit disconcerting at the time but i am thankful for each day and try not to dwell on the past. 

I do realise I am one of the lucky ones but hope it might help someone coping with this rare cancer