Stage 4 pancreatic cancer diagnosis - sad, angry, feel like I've hit a brick wall when it comes to acceptance

Hello Faylemv

I am glad you have been able to choose your treatment pathway freely and that it is working for you. 

Some people choose not to have any treatment. It is their choice. It can be for a variety of reasons, the side effects of treatment being one of them and the one most often mooted publicly as it is an ‘acceptable’ one (although as you found it triggers responses about how treatment works).

In the UK, discussions about death and decisions are very limited, partly by law.

I have asked Macmillan before whether a ‘no treatment’ sub section could be created, so that people who chose that option can discuss it freely. 

It’s an informative website, thank you. Death and dying are taboo subjects in the UK. I agree that a ‘no treatment’ sub section would be useful 

i’m so grateful for Macmillan and this forum, it helps me feel less alone

Dear Sylvie13, I m so sorry that you are being dealt this card. Sending you lots of love x

Hi Sylvie 13, so sorry to hear about your diagnosis. My nearly 75 year old mum (birthday next week) was diagnosed with pancreatic cancer which has also spread to her liver. We are all absolutely devastated. She has just found out she is going to be a great grandma in August for the first time and just had a new caravan sited where she has been for the last 55 years plus. We have not had a discussion yet about the treatment as the meeting will not take place until tomorrow. She has been so drowsy, due to the medication, and has literally aged overnight. I am just hoping she has not given up as she is a fighter. I suppose I am just looking for some hope that maybe she will perk up when they get the right level of meds. She can’t be left alone and just wants to stay in bed, not washing or having any interest in anything. I know it’s only been a week but I was just wondering if you felt the same initially? Just prior to her diagnosis she was fiercely independent, driving on her own to Wales, cooking, cleaning, going for walks, now she can barely manage the stairs. Her appetite is tiny and she suffers from pain below her breastbone and gets so breathless. It’s so hard seeing her like this. I just hope she gets to visit her caravan again and meets her great grandson child. Take care x

Hi there Sylvia,

So sorry about the situation you are in, it is such a tough call. 
I was diagnosed with stage 4 PC in 2016, I was lucky to get on a clinical trial which did reduce the tumour, but it was a tough road to be on. I had a Whipple in 2017 but the cancer came back in late 2018 following a routine scan and I now have liver metastasis & a small bowel mesentery and I was told it’s incurable but treatable to give me time. I was put on a course of folfirinox in 2019 and have just finished a course of gemcitabine. The tumours have reduced and I am so very grateful, but living life scan by scan is stressful and the pandemic and shielding has robbed myself and my husband of a chance of living life before the blighters trip me up, as it has for so many of us.

I take Creon’s too but my digestive system is problematic to say the least! So even though shielding has been lifted going out is dependent on taking loperamide!

My emotions are all over the place and the cards we have been dealt with are very cruel, I have up days and then down ones, I am determined to make the most of my break from chemo as I know things change so quickly.  I am so sorry for my husband as this journey is so tough for him too and as we have never had children I worry about how life will be for him when I’m gone.

I send you a huge virtual hug and love,

Jo