Advice if you have any

[Slopez]

My 60 year old husband of 34 years was diagnosed with a 2.8 cm tumour at the head of the pancreas in Feb 21 after a bile duct stent was fitted due to jaundice in Jan 21 Unsuccessful whipple due to tumour attached to numerous veins and arteries so palliative bypass surgery undertaken instead. Recovery from surgery has been good  but he has lost 2.5 stone since Jan 21 and has so little energy. He has been started on palliative Folfirinox chemo which began last week ....the past week has seen what little energy diminish to nothing. Nausea diarrhoea vomiting and now he won't or can't eat and will only drink little sips every few hours.  Anti emetic..meds..zomorph...oramorph..creon..Laxido...insulin and other meds taken post chemo..and a 24 hour stay in local hospital on a drip..I feel that he has given up fighting already and I don't know what to do to help as he looks so broken...if I mention drinking and eating he gets so angry..I know he is scared..angry...sad...but I want to help him....I know in my heart that all he wants is for me to be here and love him..which I do but I need to do practical things to enable him to stay with me for longer....any thoughts would be appreciated 

[PCUK Ellie]

What a lot you and your husband have been through in the last six months. I'm sorry to hear that things have been so difficult recently - thank you for sharing your situation here. How have the last few days been?

It sounds like you're being a great support for him as he deals with some of the side effects of the chemotherapy, but I can hear how tough it is for you to see him not being himself. The anger and fear you mentioned is something that I'm sure will resonate with lots of other carers reading this, and I hope that they will feel able to respond with their experiences, but in the meantime I wanted to let you know of some ways we can support you:

• We have lots of information you can download or order for free: publications.pancreaticcancer.org.uk/collections/for-people-affected. There's information about FOLFIRINOX, diet, pancreatic enzyme replacement therapy such as Creon, and useful tips on managing symptoms and side effects like nausea and fatigue.
• Our specialist nurses are here for you to talk and listen for as long as you need. You can call them for free on 0808 801 0707 or email them here: www.pancreaticcancer.org.uk/support-for-you/contact-a-nurse. 
• We run online support sessions over Zoom you may be interested in. There's one on Managing Nutrition and Pancreatic Enzymes on Thursday 12th August at 11am, and a 'Cuppa' especially for carers on Tuesday 27th July at 2pm, which might be particularly relevant to you? They're really friendly and low-pressure - a chance to meet other people in a similar situation, share as much or as little as you wish, and get information and support. Find out more and book here: www.pancreaticcancer.org.uk/support-for-you/living-with-pancreatic-cancer-support-sessions.

Please update us on how you're doing if you feel you'd like to, and don't hesitate to reach out for support.

[Borobi]

Dear Slopez. I feel for you. You are in the worst kind of hell. My husband, aged 67, 42 years married, died last October, 20 months after diagnosis. Up to 2 months before he died he was pretty healthy, but went downhill very quickly towards the end. He was constantly nauseous, couldn’t even keep water down. If he’s ready to go, please let him. It is a nightmare for you, but probably much worse for him. Just be there, hold him, tell him you love him and get any important family members round to see him. I was dreading the end, but it was so peaceful and I can now look back and know we did what we could to support him. You will get through this. Thinking of you. 

[Gaffer]

Hi. I am sorry to hear that your husband has no appetite and struggling. My husband sadly died in April, he was 56 and I am still struggling to come to terms with it. We had been married 35 years and together for 40 from age 16.

I know how you will be feeling, having that constant knot in your stomach, feeling sick yourself and watching him like a hawk, hoping he will eat something and hoping it stays down. If your husband is being violently sick I would get in touch with his oncologist as it may be he has a blocked duodenum and may need a duodenal stent/ my hubby had 3 of these! However if he is just a little sick he may need different anti sick meds, there are various ones he could try. If he can’t tolerate food you could try the fortisip drinks (these have about 300 calories in) or complan or make shakes up yourself- anything he may fancy (I understand he may not fancy anything) with ice cream in, marvel powder, anything to add extra calories. Anything better than nothing, even if it’s ice cream 3 times a day! If he could tolerate something just very small amounts so as not to overface. Again it might be worth asking the oncology team if steroids might help short term to increase appetite. Please also ring the nurses at the support line, they are fantastic and have a wealth of knowledge/ please don’t be afraid to pick up the phone. I know you will feel scared but a friendly voice at the end of the phone will  hopefully feel a little less scary. I wish you all the very best x

[Slopez]

Many thanks for the advice..I will give the nurses a call for some guidance.  

[Slopez]

So my husband had another 48 hour admission to hospital for rehydration.  They have increased his pain meds and given him another one for breakthrough pain. He is on lots of anti sickness meds as well and an anti depressant. But.....yesterday and today he actually seemed brighter which was brilliant to see. Hopefully this will  be him now for a while, it can't change any outcome but just seeing him out of bed and wanting to eat is great....he is going to have his 2nd dose of folfirinox on Monday but is going with a bit more positivity.