New user from uk

Thanks Lainy, I certainly will keep you all updated, it’s good to be able to talk to people who really understand the situation at last!

Thanks again.

Adam

Hi all,

What a nice welcome! Thank you

Ok, so a little more about me and my recent ‘adventure’.

Last year I suffered what I thought was appendicitis and went to hospital in January, expecting to have minor surgery as an emergency, after having spent half the night there they sent me away saying I have “in definable pain” and left me to the care of my gp, who said I most likely had chronic appendicitis. I accepted this and carried on, in pain, until I married my new wife this year in January and we subsequently set ourselves up in a new how in a small Kent village called Wye (it’s VERY beautiful!). So one of the things you finally do when moving home is register with a new doctor, who upon hearing the above promptly sent me for an ultrasound scan which showed a 4-5cm space occupying lesion within my liver. As my employer pays for Bupa, I immediately went private and after less than 4 weeks of scans (every variety) I was sent to kings college hospital in London to see mr Parthia Srinivasan, apparently one of the top London liver surgeons. He very quickly and frankly told me I have cancer and that if the tumour is not removed my chances of surviving to the end of the year were about 20%. This was a serious shock as the previous consultant had been telling me the ‘tumour’ is a type of blood blister! So, a week later I was back in kings college hospital, met the surgical team and they explained the procedure they were going to do, which changed at the last moment as they had just received the pet scan, but they didn’t tell me what had changed. I went into surgery, came back out some eight hours later minus the tumour, the central part of my liver and my gall bladder but with a massive cut from my sternum to just above belly button, cross sectioned by another cut going from my right hip to in line with my left nipple. I woke up in recovery and was in zero pain, I started chatting to a guy next to me who was older than me but had had far more aggressive surgery.
Later on the ward my epidural stopped numbing my wound and instead made my right leg numb, I could not get this through to the staff, they kept saying the epidural was working, yet I was in the most pain I have ever experienced in my life, this got sorted some 20 hours later by a junior doctor who believed me and got the anaesthetist to sort things but the epidural had to come out.
I left hospital after 5 days and was very glad to be home, not realising the burden of care I had put on my wife as I could not dress myself properly or even get out of bed. We both went through some hard months together in our first year of marriage an this continues.
I am nearing the end of my adjuvant chemotherapy, which my oncologist swears there is good data to support it especially with the “significant reccurrence risk”. The histology report showed that although the surgeon thought my gall bladder was also affected, it was clear, as we’re the surgical margins and my lymph nodes, so all good on that front really.
My biggest problem now is that I am still in a lot of post operative pain and I really didn’t expect to be by this time, I have noticed that the muscles on the right side of my abdomen don’t seem to work at all and I have numbness in this area also, plus, most worryingly, a sharp stabbing pain in the exact same position I went to the doctor for in the first place, my oncologist has refused to scan me until the chemo is finished in 6 weeks time so I guess I just have to wait.
The chemotherapy has been pretty hard but varies every time, it’s definitely not something I would recommend to anyone unless they had to do it, I personally dread it.
Anyway, I’m 43, and plan to stick around for a bit, I want to run in the 2014 Brighton marathon and have a child with my new wife (if the chemo hasn’t destroyed that chance!!). I’ve been scouring the net looking for up to date data with a view to understanding my prognosis, my surgeon told me in march that I had a 33% chance of living 5 years but from what I can tell this seems to be based on outdated data, at least I hope so as those odds aren’t great! This site looks like a great resource and a wealth of experience which I hope to be able to contribute to.

I’ve rambled enough I think

Adam