Hi,
I just found this website and it has answered so many of my questions that I couldn't get answers to on other websites, and also just given me some sense that my family are not alone in this thing.
I think if I just tell my family's story, and hopefully if anyone has any advice on what to expect, where to go to next, what we should be asking/telling or demanding from the Doctor's, anything like that, I would really appreciate it if they got in touch. I really feel that we are being kept in the dark with the curtains drawn, and just have no real idea of what is happening.
My Dad is 49 years old, and last November he was told he had malignant cells in the ascitic fluid build up in his stomach. He had been treated for perforated ulcers earlier in the year, but pain had continued even after treatment until 6 months later he readmitted himself to hospital and insisted on treatment.
A week after the malignant cells in the acites fluid had been found, they did a laparoscomy and realised that what they has presumed was fatty tissue from the scan was actually a thick lining of tumour, around the lining of the stomach and with feelers to the liver. We were told that it looked like mesothlioma, 99% of cases are caused by asbestos. This we thought odd as to our knowledge Dad has never been in contact with asbestos. However once the lab results came back after the laparoscomy (this took over 2 weeks, with no contact from anyone to explain the delay), we were told that it was in fact adinocarcinoma mimicking mesothlioma, and they didn't have a clue where the primary was or had been. We were told it was inoperatable, that they would refer him for chemo for which there was a 3 week waiting list, and we didn't hear from that hospital again.
By this time it was 2 weeks before Christmas, and we found it hard to believe Dad had been given this diagnosis as he was up and about and the only discomfort was from the continual build up of the ascitic fluid. He was buying presents and generally fine, so to be honest this delay in the chemo didn't bother us too much. He wanted to be home for Christmas.
However this was not to be. A week before Xmas he started having terrible pains, and this led to nausea. It was a terrible week as Dad refused to go to the hospital, and when we phoned up they were able to offer no advice other than paracetemol! Eventually an emergency doctor realised the terrible pain Dad was in and called an amulance and they admitted him on the 23rd December.
After admitting him, the hospital realised that the cancer had spread to his bowel and had closed the bowel off. They told us that they didn't want to operate as it only encouraged the cancer to spread more, and had fast tracked him for chemo. He was taken to the Beatson Oncology Clinic, which apparantly is the leading cancer specialist in the West of Scotland. Once there they started ECF, and gave him an internet print out to tell him what it was. No-one discussed with us why they had chosen that treatment. From internet reading I presume that because they did not know what the primary tumour was, it was a best guess situation. We have never been given a prognosis. In fact from the moment the Doctor told us after the laparoscomy that the cancer was inoperable, no Doctor has sat down to talk us through what is going on.
After the first dose of chemo, Dad's bowels started moving and becasue he was able to eat again he was discharged. For the first week of his discharge he went through absolute hell. He was in constant agony. GP's prescribed morphine which did no good, and an oral anti-spasmodic. His stomach made terrible noises and there was a huge amount of wind.
It was after this week that things started to improve. My dad got a visit from the McMillian Nurses, which is a charitable organisation in the UK for the care and support of those with cancer and their families. They looked through all his notes, realised none of the oral medication was getting absorbed, and changed a lot of it to an injector pump thing. They took him off the morphine, and put him on steroids. And the pain really subsided! Which is all we really could ask for at that point.
He is now on his third dose of chemo. We don't know what progress he is making, apart from the fact the ascitic fluid build up seems to have slowed down dramatically. He was in a lot of pain a few days ago before he started his latest chemo dose and they did a scan, which seems to show a narrowing of his small intestine indicating cancer in the intestine lining.
So his is where we are now. When I read some of the post here, it seesm that epopel sem to know a lot more about what is going on than we do! I don't know whether this is because we are dealing with the NHS in Britain, and most other countries use health insurance, or why really. I would be really grateful if any of this has rung some bells with anyone, or if anyone has any advice of information.
Many Thanks,
Lisa