A baby step forward

So my lovely bloglets,

Amazingly enough 6 weeks has flown by and on Thursday I was back at the hospital.  Be very proud of me, the nurse called me for my bloods who destroyed me last time and I asked if someone else could do it. Patient empowerment!!!!!  It's only taken ooooh, 6 and a half years to be able to do that!  And of course, the nurse didn't mind in the slightest and the amazing one did it.  One needle, one vein, all the blood needed, no almost passing out or throwing up or bruises.  So just in terms of that, it was a good day.

I saw the new consultant (David) again.  My now old consultant was there but I suppose I won't be seeing her again.  Do I mind this?  I don't think I do as David has done more for me in 6 weeks than she has in 6 years in some ways, but then I also feel bad that I haven't spoken to her about anything.  I know that they will have done in meetings, so I know she will be aware, or at least I assume this.  I feel in a way like I've gone behind her back.  Who knows, maybe its great for her as it's one less patient to see in the clinic....  And I think I'm a bit pissed off that she didn't make these decisions and choices for me when she clearly could have done and didn't.  Part of me wants to know why she didn't. Maybe I will ask this when I'm back in 4 weeks.

So I'm off treatment for 4 weeks to see if there is any improvement with my tiredness.  So far, I'm not sure. I've had a busy few days and not enough sleep, so I'm trying not to over analyse everything.... Not always that easy to take a step back and let it be.  But in some ways I have been doing that from the start.  A slight barrier has always been there, to protect.  I'm hopeful but wary.  I also had the lowest Leukaemic rate ever so that is also something to be very positive and excited about.  It had dropped from 0.016% to 0.009%. It's funny, I'm writing this but not feeling excited or involved.  It was also flagged that the tiredness might be due to depression.  It wouldn't surprise me if part of it is.  Who wouldn't be slightly depressed going through what I have?!  I'm feeling tired today, but it's the first morning I've had to relax since the hospital, so it's not surprising. I am also slightly concerned that 4 weeks won't be long enough to see a difference as it took me about 6 weeks to stop feeling side effects from the last drugs, but apparently the drugs don't build up in the body as they have a half life of 3 hours....

Last Tuesday I went to the leaving party of the CEO of TCT and spoke to someone who was a doctor and knew my Edinburgh consultant and spoke to me about how wonderful she was..... I now, slightly regret not voicing how I felt about that, and it's brought up a fair amount of anger.  But then, what's the point?  He is retired, she has retired, it's in the past.

So hope.  There is lots of hope, I think that I am finally being treated as me and being listened to which is amazing. It's the first time it's happened and I think that that is the biggest thing that I am processing.

Until next time,
Lots of love, laughter, and smiles.
XXX