Hello all,
I posted a few months ago as my husband had just been diagnosed as having incurable cancer. It was classed as CUP. He was diagnosed on May 10th. He had no symptoms, no pain, it was just picked up by a routine blood test. He was 47. As soon as he was diagnosed, - with the results given over the telephone ("you have incurable stage 4 cancer, sorry"). I stopped working and have been his 'carer' ever since. Although it never felt like that. He called me his 'little secretary' as I did all the organising etc.
Our treatment by the NHS trust we were in was appalling (another story for another day). No MRI, no PET scans, no physical examination until we asked for one. Just 1 CT scan and blood markers, and a biopsy. They confirmed cancer but not type etc. All they could tell us was that there were Metastases on the liver. No tumours were seen anywhere else, but he only had 1 CT scan. He was offered CisGem chemo and they stopped after 1 and a half treatments. We were then discharged from care - over the telephone. We met an oncologist once. They didn't even do another scan before discharge. My husband still felt absolutely fine and healthy. I had to beg for any treatment - and to see an oncologist - by writing to the trust CEO. I work for this trust.
We moved to another county (into my parents' home) and had a 2nd opinion from a world expert who looked at the only scan we had and the biopsy results (we begged for the biopsy). He told us it was cholangiocarcinoma. We knew what this meant, and from day 1 of our whole experience, we were never in denial, ever. But he told us there were palliative options. The original scans showed that 3 big sections of the liver were disease free. A stent could have been fitted (if they'd bothered to properly diagnose at the original trust).
Our new local trust took us on and they were amazing, the care and compassion outstanding. They said drains were possible, and jaundice had only just started at the end of July. He had the drains 2 weeks ago, with the view to decreasing the bilirubin levels enough to continue palliative chemotherapy. We knew the chances were slim, but they gave us that chance. Luckily, he still had no pain or symptoms which bothered him apart from ascites.
We fought hard for some chance at treatment for extra time (as long as my beloved husband felt fine). We were always positive that whatever time we had, we wouldn't crumble, and we didn't.
The last 2 days of his all-too-short life, was exhausted. The drains hadn't worked but all the staff were wonderful, they loved my twinkly, cheeky, courageous husband. The only blessings are that he suffered no pain and he passed away peacefully in my arms. I had a bed, pushed close next to his (in the hospital) and didn't move from his side for 5 days - from the day we were told he was going into organ failure until heaven called him up. Up until that point it was 1 hour visiting a day. He was in hospital only a short time.
He was diagnosed on May 10th and passed on September 3rd. We were inseparable for the 15 years we had together. I don't know what to do. I'll never return to work.
What do I do? I cannot imagine life without my beloved. He was (is) my life. He sent flowers yesterday (as he instructed my twin to do so after he went) and has made plans for me. One of the last things he said was "don't worry".
I'm lost. I'm frightened.
