Well I had my next consultant appointment today and sadly it didn't go quite as well as I had hoped it to. My protein went up from 32 to 40. This is 4 higher than the highest reading I have had so far, and has just scared the living daylights out of me.
I need to put it into some sort of perspective but it is hard. The consultant wants to see me in 4 weeks. Up until now he has been skipping between 6 and 8 weeks with the hope that we could extend it. So for him to make it 4 weeks scares me a lot. That along with the fact that he mentioned the chemo thing too. Not to say I would need it but to say he wouldn't put me through it unless I started becoming symptomatic or some of my readings like haemoglobin, calcium or kidney function became worrying. It was like he needed to quantify things this time. Didn't like it at all.
I got home and just blubbed. I'd held it together since the appointment but then it all just hit home. After my last appointment where my readings had gone down, I had been so positive. I'd really thought I could view it all as being stable. Maybe I had years ahead of me where I didn't even have to deal with being symptomatic. But now.....who knows. Back onto the waiting game.
I'm trying to find the positive. Perhaps it was a blip and will go down next time. Perhaps the antibiotics I was on before the blood tests have impacted the reading. At least my next appointment being in 4 weeks means I will get an answer to all of this on the 12th Feb.
The bonus is I'm sort of ok now. Before it was taking me days to get over a less positive result, now I'm already feeling better.
I joined a gym this afternoon....maybe if I can throw myself into that and eating better, I can fight this damned disease all the way. Maybe I can force those readings down. I sincerely hope I can. For Nick, for Rebecca and for Sam. And for all the rest of my family and friends who are watching me through this. If you ever get to read this, I love you all to pieces. I am so lucky to have your love, support and friendship and don't ever think I take it for granted.
I'm off for a glass of red now....I think I deserve it!