It had been two weeks since I'd had my scan at Harley Street to check my tumours were no longer growing and hadn't spread, and considering I knew that the hospital had received the images the day after the scan, I was growing pretty impatient waiting for the results! So I called the hospital in an attempt to get through to the Surgeon's Nurse who had, up until then, been very helpful. It took me a few days to get a response, but eventually she called me back. It was last Tuesday when I finally got the call and she told me that I should have been informed that an appointment with the Surgeon had been made for the following Friday. I was absolutely fuming. Once again I hadn't been told, no one had called nor had a letter been sent, if it wasn't for me constantly chasing them up I would have missed another appointment. Surely the hospital are supposed to make a time like this as easy and stress free as possible, not add to your anxiety! It amazes me that the admin staff fail, consistently, to alert patients to follow up cconsultations, yet if you miss one they're very quick to call you and demand an explanation as to why you weren't there... well, you can't attend if you don't know about it!!
I was grateful that she had called me back, but I told her I wasn't happy about the treatment I have received throughout the whole of this diagnosis, there seems to be no communication within the department, and certainly no communication with the patients. She made no apology but gave me my appointment time, I thanked her and was about to hang up when she added, "I will just tell you this briefly though". She then went on to tell me, over the phone, that she had seen my scan images that morning along with the rest of the Liver Team, including my surgeon, and they showed that although the cancer hadn't spread, I had almost no liver function. She said that there was no hope of surgery to save any good pieces of liver - as there was none, and also, there was no chance for a transplant - she was basically telling me that there was nothing they could do for me now.
I couldn't take it in, and I just cried at her. "You're telling me I'm f*cked then, aren't you?" I said, "Yeah", she replied, then she asked me if I was ok! I couldn't believe she was telling me this on the phone, and while I was at work! I'm not sure a Nurse is even allowed to give out results without a Consultant present, and certainly not over the phone! I had only called for an appointment, not the results! She told me to come in and see the Liver Doctor on Friday, although I couldn't really see the point! I didn't need to be told that news again, and thought instead about seeking a second opinion elsewhere. But I decided to go and see him, I wanted to know why he was giving up on me when as far as we were aware, it was only affecting my liver, why couldn't I try a transplant as a last resort? I wasn't ready to give up, and I was frustrated that a complete stranger was forcing me to stop fighting.
I had the worst few days waiting to go and see him, I even spoke to my boyfriend about making arrangements if I didn't have long left. It was an awful conversation for me to bring up, but must have been a thousand times harder for him to hear. I hardly got out of bed during those three days before I went to see the Surgeon, I didn't eat, and I couldn't sleep.
Friday arrived and as I got ready to go to the hospital, I could feel the knot in my stomach tightening as the seconds ticked by. The family came with me and as I sat waiting to be called, I could feel my eyes watering. We weren't waiting long, I walked into the Consultation Room, and the Doctor gave me the biggest smile. I looked at him angrily, what the hell was he smiling about? I knew he was about to tell me the worst news possible and I looked up to see his nurse sitting on a bed behind his desk staring at the floor. "Good News!" He beamed, "Your tumours haven't grown, and they haven't spread". He confirmed that he thought they were now dead, and so there's no longer any live cancer in my body. He added that although the scans showed that my liver function is bad, he didn't want to remove the dead tumours and damaged organ tissue incase he accidentally removed good liver unnecessarily. He also said there was no need for a transplant because as far as he is concerned the cancer is no longer live and therefore not a threat. It was completely contrasting information to the news the Nurse had passed on over the phone a few days previously, she had been completely wrong! I sat looking at him in a complete sate of confusion. He asked me why I wasn't happy, "This is great news!" He continued, "You could live like this for the next 30 to 40 years!" I murmered that of course I was happy, but that I'd had an absolutely awful week, because of what the nurse had told me. Before I could finish my sentence he said I shouldn't worry about what anyone else says, he is the Doctor, my concern should lie with how he interprets my scan, not anyone else. All the while the nurse kept her eyes to the floor.
But of course, I was elated. Inside my heart leapt, it was the most amazing news, and even more so because of the mis-guided information we had been given. He told me to come back in January for more scans, to check everything is still the same, if the Cancer becomes 'live' again, then I guess we're back to the drawing board. But my body seems to have healed itself, I have had no treatment for his diagnosis, I guess all that healthy eating and exercise has something to answer for!!
But I was angry that I had been put through the worst week of my life for no reason. So I asked to speak to the nurse after my consultation, to ask her why she thought it appropriate to have that conversation with me (even if the information had been correct) over the phone. But she refused to talk to me, she refused to come out of the Consultation room. My mum managed to get through to her on the phone a few days later, but she made no appologies for how she had made me feel. Instead she blamed me, saying I had mis-understood what she had said, and pointed out that I shouldn't have asked for results over the phone - all of which, was incorrect. There was no way I would have asked a nurse for the results, it's only the Consultant I'm interested in hearing from, and I didn't mis-understand anything - I understood every word she said.
But I'm done (for now!) wasting my energy on incompassionate and, frankly incapable, hospital staff. I don't need to go back for another check until January - which seems a life time away now!
The body is an incredible thing, it's much more resilient than we realise. Christmas has certainly come early for me this year, and I thank God, for my little Miracle.
