Hi everyone and thanks to all of you for your responses and positive feedback.
It been a while since I've been back to the site, we've all had our heads down focussing on getting my sister through the first 6 months of treatment.
She's definately been showing some signs of improvement in respect of general outlook and we've even managed to get her out and about a little which can only be a good thing. I hope positive things are happening for you guys too.
I was hoping for a little more advice, guidance and insight on some recent development. I get the best feedback from the members of the site than from anywhere else.
My sister got up yesterday morning feeling fine but by around 11.30 was complaining of headaches and blurred vision. By 2pm she was acting very irrationally, repeating sentences over and over again, switch the TV and Kitchen taps on and off and generally being very fretful.
We all feared the worse but a brain scan and bloods have all come back OK. She is still very confused today and the doctors are a little lost to understand what is happening but they have suggested the possibility of steroid psychosis. Her consultant did extend her steroid treatment recently to end her cycle more gradually. Has anyone every heard of anything like this before?
My second question is around stem cell replacement treatment. When my sister was first diagnosed her consultant mentioned this but said it was 'way down the line' and would be done to give her an extra 12 month or so. Now he has turned round and said they are going to do this soon after her first cycle of treatment finishes. My sister has aksed why he wants to this and he keeps stating the 'give you extra time' line! My sisters read this as meaning she her cancer is more advanced than she hoped, but her consultant has never given any indication to her progress.
We're all very confused and the consultant never seem to explain anything to us properly. I think he's forgot that he is dealing with individual people, not just number on a page and people just going through a process.
In the months since her treatment has started he hasn't once gave her something positive to hold onto, despite her bloods going in the right direction, not further myeloma or lesion development anywhere in her body etc.
My sense is the stem cell (and other high dosage treatment) is more readily given to younger and fitter myeloma sufferers (my sister is 41) as they are better suited to handling it. If this is the case, why the hell can't the consultant just come out and say this instead of just throwing us tit-bits of medical journal speak!! The emotional well-being seems to get forgotten in favour of treating the cancer but I'm a big believer in needing both to go well to aid recovery.
My sister requested a 1-2-1 with the consultant to get some clarity and came away just as confused and with the offer of 'do you want a different consultant, because clearly I'm not communicating with you in a way you would like' ringing in her ears. The man has the sensitivity of brick!
Any advice on any of the treatment issue raised, or how to deal with an unhelpful consultant, would be beneficial and very welcome.
Thank you all
Gary
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