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| Blue moon, you saw me standing alone. |
Maybe it is the impending SCT that weighs heavy on my mind (well it isn't my hair). Six years ago we were prepared both mentally and physically. We had bags packed ready for the off. This time, nothing. Mike says he will pack Tuesday....... It isn't just the lack of organisation by Mike, but all the unanswered questions that we have about how it is all going to work with the added complication of dialysis.
"They know what they are doing."
"We've done it with dialysis patients before."
Yes, but how exactly? We want to know more. How do cope when Mike needs to go to the toilet and by that I mean NOW! When is dialysis? Is there enough communication between the ward and dialysis unit? It is appalling at our local hospital, the dialysis unit is great, but the wards fail to tell them they need to do the antibiotic and Mike ends up missing it. There's no named person to contact at the QE this time, no CNS who we know by a first name.
I don't have the emotional or physical back-up of my children this time. They were all at school or college. even the youngest was 15 and able to help with the mundane tasks. Dog walking, washing, filling and emptying the dishwasher, just being there to give a hug...... This time I am alone. My anxiety makes me over-sensitive, I can't even get people to share my JustGiving page, only two FB friends answered my plea and it hurts. The majority of them are connected to Myeloma and still they won't help.
This is a tough place for you, Lorna, and while I am far away in distance, I am a lot closer in spirit. I have Mike on the Pink Light list and I am holding him in Reiki energy and you as well. Is there a kind of social service person at the hospital who can give you some help or an advocate ? And I am sure Paula is on the Other Side keeping people down here on track... wish there was something else I could do.
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