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Re: New Diagnosis Limbo

Posted: Fri Feb 10, 2017 5:02 pm
by Proud Wife
Wow! I'm so so pleased for you all. Excellent news.

All the very best to your dad throughout treatment.

Lots of love. I do hope you will keep us posted on your dad's progress as it's fabulous news to hear the word "remission" xx

Re: New Diagnosis Limbo

Posted: Thu Jan 18, 2018 5:01 pm
by LanasMum
Hi. Nearly a year on and I had been waiting for the opportunity too, as Proud Wife suggested, type news of remission. Sadly I can’t.

Dad deteriorated last Spring and was hospitalised before his diagnosis could be officially changed from PC to Non Hodgkin Lymphoma through further biopsies. He started chemotherapy in hospital and tolerated it extremely well. After 3 rounds, the lymphoma was 80 % gone. After 6 rounds, we had a fabulous family holiday to celebrate my parents 50th wedding anniversary. He started having increasing pain when he got home but his end of treatment PET scan apparently showed complete remission but with a small cyst or scarring on the pancreas. He was told it must be pancreatitis and told to follow a low fat diet

Significant pain persisted, together with awful diarrhoea. We tried and tried to get him seen to no avail for weeks- finally got an “urgent” MRI and we waited 5 weeks for the results, chasing regularly. We were given an appointment with a GI consultant - all she could say was that the lymphoma was back and we would have to wait another 2 weeks to see Haematology. By this time Dad has lost over 22 kilos in weight, was struggling to eat and taking oramorph twice daily. We got the appointment brought forward and he was admitted straight from that appointment for a blood transfusion and biopsy

He came out on Christmas Eve and we had a lovely visit from overseas relatives over Christmas. On New Years Eve, I sat up with him to ring in the New Year. By Sunday 7th, we took him to A&E and he was admitted - the change in a week was heartbreaking. We had to chase, shout and scream for a diagnosis, a treatment plan, communication whilst his abdomen grew and grew dramatically with this awful thing inside him. All too little too late - they do now say that nobody has ever survived the lymphoma that returned but it could have been managed so much better. He passed peacefully this morning - we had a lovely last, relatively lucid afternoon yesterday and Mum was with him all night ( he sent everyone else home)

I’m numb, angry and still in shock from the speed of his deterioration and passing. My faith in the NHS has diminished significantly

I wanted to tell you all because you provided so much support at the outset when we were told the diagnosis was advanced PC and you were so generously happy for me when we found out he had a “treatable” cancer.

My best wishes to everyone xx

Re: New Diagnosis Limbo

Posted: Thu Jan 18, 2018 6:45 pm
by Didge
I’m so sorry to hear this news and the awful delays involved. I’ll be thinking of you as you come to terms with his sudden decline and perhaps in time you can draw some comfort that he passed peacefully x

Re: New Diagnosis Limbo

Posted: Thu Jan 18, 2018 9:02 pm
by Veema
So sorry...


Re: New Diagnosis Limbo

Posted: Fri Jan 19, 2018 5:04 pm
by PCUK Nurse Dianne
Dear Lanasmum,

We are so sorry to hear of Dad's passing, please do accept our sincerest condolences. Thank you also for sharing your story at such a difficult time, as you highlight the diagnosis of pancreatic cancer (as we all know too well) is a difficult one and we do hear of occasions where patients will have a pancreatic lymphoma as a diagnosis.

I thought how wonderful that you have such special memories of a family holiday and a special New Years Eve that will be with you for a long time. I am sure these were very special moments for Dad too. Thinking of you all in the days ahead.

With our heartfelt sympathy,

The nursing team
Pancreatic Cancer UK Support Team

Re: New Diagnosis Limbo

Posted: Fri Jan 19, 2018 8:02 pm
by patrigib
Very sorry for your Dad :(