Sad, angry and feeling lost

[Sylvie13]

I was diagnosed with inoperable stage 4 pancreatic cancer at the end of September. Having passed through shock, I'm now feeling angry and lost. I've opted for palliative care at home as the one chemo regime offered came with a list of side effects that read worse than the disease itself. I'm comfortable with my decision and so are my family. I'm being wonderfully cared for by our amazing NHS and our local hospice nurses - I couldn't ask for more. But I can't get through the sadness and anger and move towards some kind of acceptance. I feel like each time I try I hit a brick wall. I really need to share with others in the same place.

[PCUK Nurse Lisa]

Dear Sylvie13,

My name is Lisa and I am one of the support line specialist nurses working at the Charity. I am sorry to read of your recent diagnosis and I truly hope you find some support along your way through the Discussion Forum family we have here. I am really glad that you feel you have good support with the NHS and hospice teams, as well as some family around you. I hope that the Forum Family will be able to share some of their experiences with you too. Welcome!

If you do need any additional support, please do pick up the phone to me or one of my colleagues here on the support line. We provide a confidential support service - Freephone 0808 801 0707.

Sending you a welcome and best wishes,

Lisa

Pancreatic Cancer specialist nurse

[Sylvie13]

Thank you so much, Lisa.

[Jaydee555]

Hi there. My husband is the same and We dreaded the folfirinox chemo. He has had 2 rounds and has had no side effects apart from hiccups. It may be because it is only 2 rounds done but he has had a new lease of life. Less pain in tummy but had hardly any pain before until eating. You don't know how you will react until you try it. Good luck

[vivtorr]

Hi Sylvie. I was diagnosed in the beginning of July with the same diagnosis and have been suffering the same emotions as you. What you describe really resonates with me. With the addition of sadness which catches me off guard sometimes. My first Oncologist was fairly brutal in his prognosis and spoke to me as if I ws a statistic and not a human being who was in a fragile place. I got advised to get a second opinion from a nurse who knew this oncologists unsympathetic reputation. I did this and found a realistic prognosis, with an oncologist who gave me the confidence in him and the health teams judgement. I am so glad you have found the NHS so caring as my experience has been patchy. I have been able to move on I have very few days of sadness and I am now living with P.C rather than dying from it. The mental shift for me has been the amazing support I have received from dear friends and family, which I lean on without guilt. Some excellent counselling provided by a local charity and the decision I made to embark on the Folfirinox Chemotherapy. I was extremely scared after reading the side effects and during these first 5 rounds experienced 2 nasty side effects sending me to A & E but despite this it isn't nearly as bad as I thought it would be and I feel I am doing all I can to get some extra time. I am living each day as it comes and I do find pleasure in everyday little things. I am calm and very happy to speak and be with my friends - when I can see them during this lockdown. I have come to accept instead of 'why me?' 'Why not me?' And of course the anti depressants I was prescribed at the end of August must be helping too. I now don't think about dying but each day I think about living. It has taken me 3 to 4 months to get here and I know we are all different but I am so glad I am now in this place as I really could not have maintained those earlier feelings. It can be done with the right support and you sound like you have a good start with supportive people around you, get a good councillor - and you might need to try a few, and if you already don't take them, antidepressants if you feel they may be benificial for you. Your decision about not taking the harsh Chemo I absolutely respect and understand. I have also been there in terms of decision making and it is not for everyone. I wish you good luck and I just want you to know it is possible to get there. It does need a bit of work though.

[Vasil]

Dear Vivtorr, what you have said is amazing. About living and getting the most out of it. I do not know how you feel but I truly admire you. My father (same diagnosis as yours) is doing Folfirinox but he is in very low moods and seeing no hope. Same with me. I have to learn from you. Your words are truly inspiring. God bless you.