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

Hi Sylvie13, I don't come on this site much as I am incurable so I go on that site, can I just say how sorry I am to hear your diagnosis.

When I was diagnosed in March my world ended along with my partners, but over time we have come to accept it better, as for the treatment I opted for palliative chemo I'm on my 11th round tomorrow, all tumors have shrunk, when we went for the pre-treatment talk with the nurse we were also told the horrible side effects, such as sepsis, throat closing due to one of the chemos, can't eat shell fish as there is a risk of salmonella, the list carried on and I must admit I was pretty scared but I still signed on the dotted line,  and yes the 1st round put me in hospital but here I am still going, the nurse or oncologist have to tell you the worse case scenario and yes some people do have bad side effects but not everyone, I know you have opted for palliative care and I wish you all the very best I just wanted to let you know my experience

xx

Hi Devon Cat,

Thanks so much for responding. I'm glad your treatment is helping you and that it's giving you more time. For me, as my cancer is inoperable, it's about quality over quantity which is why I've made the decision for palliative care. Thank you for sharing 

xx

Sylvie13

PS! What's the other 'site' you mention?  xx

Hi. I'm very sorry to hear of your diagnosis and decision over treatment. Perhaps it might help to hear of an other's experience??

I was diagnosed with Aggressive Pancreatic Cancer which had spread to the Liver in June 2020. The worst part of the diagnosis (even after being given paper-work to claim a Blue Badge because you have a terminal illness) was waiting for appointment letters to drop through the letter box and the booked telephone appointments to be kept. Eventually, we got a "mask to mask" appointment when the proposed treatment was explained along with all side effects. My wife and I elected to go for the treatment - six cycles of four weeks each with 14 days on chemotherapy pills and 14 days of rest followed by blood test and CT Scan after three cycles. The pills are 1500mg of Capecitabine twice a day with food, 12 hours apart; and, on days 10-14 of cycle, 400mg of Temozolomide on an empty stomach, preceded, by one hour, with 8mg Ondansetron (stop you being sick, and, boy, are you sick if you don't take it!) The scheduling of taking these pills is quite tricky, but manageable.

I sailed through the first two cycles (except for two nights when the Cancer Centre hadn't given me any Ondansetron, which I ended up getting from the GP - the 24 hour Help Line was no great help). I'm now on Day 15 of the third cycle and finished the chemo pills last night. This third cycle has been hard, I must admit - a lot of nausea (almost to the point of being sick on a couple of occasions), dizzy spells which usually pass fairly quickly, my finger nails are getting a bit brittle and, oh, weariness, weariness, weariness - just managed to give the dog his walk this morning, but its getting hard.

In spite of the above, details reported to a Cancer Support Nurse two days ago who has promised to write to the GP to dispense new anti-nausea pills plus more of the Ondansetron (no pills I'd been previously given had any effect on the nausea - even tried Gaviscon!), I shall be continuing. I have a CT scan next week and, I believe, another "mask to mask" appointment with the Oncologist the week after, just about when I'm due to collect next lot of Chemo pills for Cycle 4.

I should just mention the Creon 25000 tablets (dispensed 700 at a time) that I have to take before every meal - permanently - almost the worst part of everything!!

I'm in my seventies, retired and was playing golf regularly with a grand bunch of chaps who are being very supportive.

Good luck for the future. I believe in fighting, in the hope that my experiences might help others.

Living with incurable cancer site, sorry about delay xx

Thanks! x

Hi WeDontByte

Thanks so much for your response.

My decision for palliative care only was an easy one to make. My three brothers all have/had cancer - three of my nephews and my sister in law. The ravages that chemo had on those who had it informed my decision. Every individual is different, I think, and every decision must be respected. I don't tend to talk in terms of fighting or battling cancer because those terms imply that you can win or lose.

I'm on the Creon 25000, too - who knew pigs shared so much with us! 

I hope you continue to walk the dog - I'm trying to keep riding my horse and walk my lurcher as both provide a great degree of peace for me.

Take care,

Sylvie13

I am sorry for your diagnosis, similar to my husband’s, who has opted to have treatment. 

I was however raised by militants for ‘the right to choose’ if i may word it that way, and therefore at ease with the idea of non treatment which as you point out is, and should be, a personal choice. As far as i recall, no one ever mentioned that acceptance etc was a given, you still need to go through a process of grief, anger, denial and resignation. And loads of cups of tea...

The bog standard techniques apply: take gentle care of your self, walk your lurcher, whatever takes your fancy.

You say you find your daughter’s feelings hard to handle. Does she support you in your decision or is it a source of tension added to her sorrow at your diagnosis? 

I wish you all the best

Hi 747

Thanks so much for your thoughts. I'm very much with you on the 'right to choose' brigade.

My decision was made with my daughter who is being an amazing support to me and she is glad that my decision was palliative care at home. She couldn't be with me at the oncology meeting because of Covid but I recorded it, which was a great help to her.  

I'm following your advice re bog standard techniques although riding has become too painful, so I spend time with my horse grooming her and making a ridiculous fuss of her which keeps us both happy.

Thanks again,

Sylvie13

I’m sorry to hear about your diagnosis, Last July and I was diagnosed with stage 4 pancreatic cancer with secondaries in my liver and lungs. I’m 58 and have so much to live for, my partner and I were looking forward to our retirement and moved from Leeds to Northumberland 18 months ago because when we used to have holidays here we would dream about living by the coast one day and instead of dreaming about it we decided to do it only to have the rug pulled from beneath our feet. I opted for 12 rounds of chemotherapy instead of palliative care. I sailed through the first 9 and struggled with the last 3. I respect your decision to opt for palliative care but please bear in mind that not everyone suffers with unmanageable side effects. After my 9 chemotherapy I had a nasty reaction and my oncologist said that the chemotherapy had already done 99% of It’s job and could consider stopping. I decided to carry on and have all 12 rounds because psychologically I would feel that I’d given it my best shot. My pancreatic tumour has more than halved and my secondaries have reduced. My oncologist said that because I responded well to the treatment he would consider more chemotherapy further down the line to potentially extend my life further which is something I hadn’t realised would be an option when I was first diagnosed. I also struggle with feelings of sadness and anger, this isn’t how my life was supposed to be. I thought that I’d live into my late 80’s. I’m the first person in my extended family to have cancer.