How can this happen? This wasnt supposed to happen, I wasnt told it COULD happen?
The January check up was fine, bloods all normal CA125 10 and C9-19 10 also. My GP had asked me to mention that my ESR (Rheumy blood) had risen again, this was dismissed by my Oncologist.
I was due my next check up in May........May came and no word from the hospital, so I rang, to be told I was on a "Waiting list" for a review appointment. I kept ringing for a week and eventually got an appointment for the 15th June, 1 month late. Meanwhile I was absolutely fine but my ESR was still rising and my GP was concerned. She wrote to my Oncologist and demanded further investigation.
At my appointment, I had the usual poking and prodding etc and the Oncologist said that she really didnt think there was anything to worry about, she hadnt heard, seen or felt anything of concern but because my ESR was so high that she would organise a CT scan.......to shut my GP up!
Lovely NHS meant there would a 4-6 week wait for a scan.......I organised a private one but it took a further week for my Oncologist to refer me!!
I had my scan on 28th June, and the radiologist told me my CA125 had risen........I got a bit hysterical!!!!! It took a further 8 days to see my Oncologist again to get the results.....that was Tuesday 6th July.
I was on my own and was told I have a 3cm lesion in my liver, I was just numb, couldnt even ask sensible questions. I did ask if I was now terminal and she just put her head down. She couldnt look me in eye. She mentioned that she was going to look at possible liver resection (Slim chance of) but that she has to go to the Multi Disciplinary team next week first. I was there about 15 minutes, I couldnt talk, she wasnt volunteering any info, I just had to get out of there.....so I left......in very bad shape!
Right now this is all I know......I dont know if it is on the liver or in the liver. There seems to be some confusion about why its at the liver at all.....and they think it HAS to be somewhere else too.
I feel SO let down by my Oncologist and the NHS in general.....I know this couldnt have been stopped but it should have been caught a lot earlier. I know if I dont have the operation that I will only have palliative chemo. Im angry, confused and just dont know where to turn.
I am SO scared and completely out of control of this.........I know I could only have months left to live........why cant they just DO something!!!!!
