My Lewis

[LisaC]

Hello

I am here sadly because my fiancé has been diagnosed with a large mass on his pancreas with liver mets. He is due to have his first chemotherapy tomorrow but he is so weak and confused, the bloods taken today show he had a high calcium. He has been confused and falling asleep mid sentence the last couple of days. We thought due to the increasing doses of analgesia and pregablin. He is only 37 years old and I am 34. He had all the symptoms for months and refused to be checked out by the hospital as he did not want a covid test (his biggest fear) so waited for the GP who took their sweet time and just prescribed lansoprazole, there were deranged liver bloods but they did not want to further investigate until we asked them he was sent to hospital. In a&e the first thing was this might be a cancer. By the middle of the next week we knew he had a mass and was awaiting a liver biopsy. During this he was also being treated for a positive blood culture so was in antibiotics for around 4 weeks. He came home in antibiotics for a grand total of 4 days before I had to call an ambulance as he was breathless, a large pulmonary embolism was seen and another week and half in hospital and he came home again.

He is so weak right now, needing a hospital bed and frame, I’ve been doing all his personal care but I am struggling due to his size (160kg and 6’2).

The nurse from the hospice told me about his calcium and said he will need to go to the hospital tomorrow reguardless as he is due his line to be changed to a picc line from midline and she said they usually give fluids and steroids if they have a high calcium before the chemo but I’m sure when they see him they will be unable.

He looks so gaunt in his appearance and I can see his collar bones which I never have before I just think this has gone too far now, the upper gi nurse said as long as he is well they will treat him. I have been talking with the specialist nurses here almost daily but I am just so lost, I can’t deal with him being end of life at home I am a nurse myself so I can see what is happening.

I just need someone who has been through this to talk too, I know this is not the most active forum.

[laci06]

I am sorry that you have to go through this. It is always terrible to read when someone is diagnosed, especially if he/she is diagnosed at such a young age.

Do you know whether it is pNET or adenocarcinoma? When did he started to experience symptoms?

[LisaC]

It’s adenocarcinoma, he has has symptoms since maybe June/July time, his chemo was cancelled as his HB was 47 so needs an emergency transfusion so he has been admitted to hospital.

[laci06]

Is he going to start FOLFIRINOX or something else?

[Borobi]

I’m so sorry Lisa. It’s a truly horrendous thing to go through. Don’t blame Lewis or yourself for not getting treatment sooner - unless you’re one of the fortunate minority where surgery is an option, the outcome is inevitable. If Lewis is willing, take what treatment you can to make the most of what time he has left. But don’t be hard on yourself. Caring for someone is tough - take what help you can get. I know covid makes everything worse but if you’ve family close get them to help - visiting terminally ill people is allowed. Talk to people, especially anyone who has been in a similar situation. You’re doing a great job, just take it one day at a time.

[LisaC]

He was due to start FOLFIRINOX yesterday but his bloods were so deranged he was not able to have it and he was admitted to hospital, he has had blood transfusions, fluids and pamidronate to treat the calcium, also on a high dose of IV steroids. I phoned the hospital palliative team so they could review him and the ward sister said I could visit, the palliative nurse was waiting for me with 2 drs. They explained they are treating his deranged bloods as best as they can give how swollen his legs and tummy is.

[LisaC]

1 day shy of 5 weeks post diagnosis my Lewis declared he had enough and passed away yesterday night while I nipped out for a wee and fresh air. I am absolutely devastated. The oncologist said it was very aggressive to have caused all the problems it did in such a short time. I’m glad he is not in pain anymore.

[laci06]

I am sorry for your loss. Terrible disease.

[Borobi]

Oh Lisa, I’m so sorry. It’s devastating to lose someone so quickly and so young. My husband died 8 weeks ago, but we had 42 years together and he survived 20 months from diagnosis. Look after yourself, take as much time as you need to grieve and talk to people who care about you. Sending love and warm wishes.