A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

Pete.
Posts: 4
Joined: Thu Nov 21, 2019 4:43 pm

Newbie.

Postby Pete. » Fri Nov 22, 2019 11:44 am

Hi all , thankyou for admitting me to your great group. A brief summary of where I am at :-
After a couple of weeks of disturbed sleep through abdominal discomfort I awoke bright yellow on my 62 nd birthday on Aug 23rd 2019 . I got a next day GP appointment for the next day and was told to get myself to casualty straight away . I was admitted to an assesment ward and on to male surgical . I was released 3 weeks later after all the tests/ scans etc with a diagnosis of cancer head of pancreas which had blocked my bile duct causing the jaundice which was treated effectively with a stent .
I have now had 2 lots of chemo (Folfirinox) out of a planned 12 . I am on the usual medications ie Zoomorph and Oromorph as needed , Metoclopramide ,Creons etc and I seem to be coping quite well both physically and mentally though I do get all the common side effects . I am staying busy , putting my affairs in order . I have re-done my will , arranged my own funeral and chosen and met the celebrant for the service which will be as happy an occasion as possible......I did have some fun when I walked into the funeral directors and told them I would like to arrange a funeral ,he sympathetically asked me who is the deceased and you should have seen his face when I replied "me" !😁.
I have tried to get as much admin done as possible to save my beloved the pain of doing it when the time comes and the dogs are not at all sympathetic to my illness and demand their walks which is also good for me once I have dragged myself off the couch.
I am not in denial about the inevitable final outcome of this illness but try hard to ignore it as much as possible and to carry on regardless aided by my wonderful supportive lady and family .
I am so pleased to have found this group which is full of inspiring people and invaluable help and advice along with being able to share with others in the same situation .
Thankyou once again for having me. Pete.

Pete.
Posts: 4
Joined: Thu Nov 21, 2019 4:43 pm

Re: Newbie.

Postby Pete. » Fri Nov 22, 2019 11:47 am

Above....Sorry , obviously a next day appointment would be for the next day !!!!!

AndAde
Posts: 34
Joined: Thu May 18, 2017 8:51 pm

Re: Newbie.

Postby AndAde » Mon Nov 25, 2019 8:49 pm

Hello, and welcome to the forum nobody wants to belong to.

It's been a long day looking after my patient, but your post has made me smile, so thank you for that!!

I'll keep my fingers crossed that you continue to cope with the chemo and manage any side effects.

Good luck to you on this rollercoaster xx

Dee123
Posts: 36
Joined: Wed Aug 08, 2018 8:21 pm

Re: Newbie.

Postby Dee123 » Mon Nov 25, 2019 11:26 pm

Welcome Pete, your post made me smile too! It helps to stay as positive as possible.

Good luck with your chemo. Sounds like you are doing well so far.

It is good to write on here, it's therapeutic :) Keep us updated x

PCUK Nurse Rachel R
Posts: 66
Joined: Thu Jan 25, 2018 10:52 am

Re: Newbie.

Postby PCUK Nurse Rachel R » Wed Nov 27, 2019 3:53 pm

Hi Pete,

Welcome too to you on behalf of the nursing team here. Glad you have found this forum and that you are finding it beneficial.

We are here too for anything that you may like to discuss, whether it's questions about chemotherapy or difficult to manage certain symptoms, or even if you just need a listening ear - it would be a pleasure to speak to you or email you. Our contact details are on the signature below.

Wishing you all the very best as you continue with chemotherapy.

Rachel

Rachel Richardson
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

Pete.
Posts: 4
Joined: Thu Nov 21, 2019 4:43 pm

Re: Newbie.

Postby Pete. » Thu Dec 05, 2019 8:04 pm

Well thanks all above for your replies , it is important to smile because as we know , the bad bits are bad , hating the chemo but liking that my cancer markers are going down and I know that for one week out of every two I can eat , albeit with a nasty metallick after taste . Just had a couple of days in hospital with loads of infections.....Stomach , bowell , bladder , you name it but 48 hours iv antibiotics and my Mrs recons I am back to my old , annoying self . I will be quicker to contact my GP next time I feel a bit under the seather , lesson learned .
Chins up all round , happy christmas.👋

PCUK Nurse Jeni
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: Newbie.

Postby PCUK Nurse Jeni » Wed Dec 11, 2019 1:20 pm

Hello Pete,

Thanks for your post - such an encouraging one too!

I am sorry to hear that you have been in hospital with some infections, however, you seem to have made such a great recovery. It's good to hear that you are feeling better after the antibiotics, and that you have learnt to go to your gp sooner if you feel unwell.

Thanks for sharing this, as its good feedback for others to read.

And its great to hear that your cancer markers are also reducing! I think you have made a good point about the benefits and negatives of chemo here - certainly, it has its challenges, but you are seeing a good outcome, which inspires and "keeps you going" also.

Have a great Christmas Pete!

Kind regards,

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

thenextmrsclooney
Posts: 3
Joined: Sun Dec 29, 2019 7:26 pm

Re: Newbie.

Postby thenextmrsclooney » Mon Jan 13, 2020 1:54 pm

You sound like a person after my own heart. I keep positive, laughing all the time even if the humour is sometimes a bit on the dark side. Like you I am not ignoring the fact that the end may be closer than I should like, I am choosing to live and not focus on death. My cancer is in the body of the pancreas and is inoperable at the moment. My markers are rising even though I am having chemo. It's a bit disappointing but it may not be as bleak as it appears to be. Just like you, I am using this time in a positve way - getting my affairs in order, doing my will and taking the oportunity to pass on my words of wisdom to everyone who is unlucky enough to be caught in my company longer than 5 minutes!! I think I am lucky to have the luxury of planning for my death. Some poor souls don't even get a chance to say goodbye. I am writing letters to my Son, Husband and siblings. I have shed a few tears but I have tried also to make them laugh when they read them. It has been quite theraputic actually. I have been taking lots of photos with family and friends which has been great fun. I even managed to get my partner of 24 years to marry me, and conned a dirty great big diamond ring out of him too - so I think that's a real positve outcome. Carry on laughing and please accept my very best wishes to you and your family.