I'm just so frustrated with not knowing where I stand regarding treatment now with HSCT or not. So since the meeting on 18th March (regarding HSCT) I have had no update regarding what decision has been made if at all yet. Johnny (ms nurse) has been on leave due to the Easter break, and fair enough he is of course entitled to this. I emailed my neuro's sectary to see if I could find out that way. The sectary was very helpful and enquired with my neuro, but she was told to pass on the message that I should speak with Johnny when he is back from leave.
Now I'm thinking, I wonder what does that really mean?!? I'm driving myself nuts contemplating if that means my case for HSCT was rejected and it's back to plan A with Lemtrada treatment or does it just mean they think I'm still shocked and devastated at the idea of HSCT. The nuts thing is i'm not even sure what decision I am hoping for anymore. Having researched HSCT and I did a lot of work to 'come to terms' with this procedure and the chemo, it somehow feels like it could be a disappointing waste of time and a bit of a let down to not have this opportunity.
I just wish there was anybody that would be able to fill me in, in the absence of Johnny. It's quite unfair, maybe they don't realise my days are filled thinking of this as soon as my mind isn't busy with doing stuff I have to do in usual daily life.
What's even more frustrating is that I wasn't the one to go digging for this treatment, its was my neuro's suggestion to convince me of having a relapse and switch to HSCT, I'm so angry now the neuro won't let me know how it went and now just passes the buck for Johnny to handle whatever the outcome is.
Rant over. Fingers crossed I will be able to update tis bad mood on Tuesday (still 5 more days!) :-(
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