Day 3 – Fri

Hello campers, thanks for tuning in…

Now have to be weighed twice a day as fluid balance and lack of eating have to be measured closely, and Prof has insanely chosen 6am and 6pm for this dubious pleasure. Bloody crazy that if I finally drop off in the late early hours, someone will wake me up just to weigh me. That needs sorting out.

Had a second average night sleeping at the foot of the bed. Already not easy as I have 4 tubes hanging down in my top, to avoid pulling on. Think I am going to have to ask for a newer mattress, as for three weeks this unlikely princess can't kip on the many lumpy peas this one holds.

Also woke up to the odd thought that if we are allowed the tv on in the background as distraction while the nurses are delivering my stem cells back, I'll be able to see Trump's inauguration later today. Barely know which is the scarier prospect…

Mouth totally fine still so far, so can eat as usual. Will need something orally thrilling to get me through today as the plan is to be either on IV or having stem cells delivered into my neck tubes for about 12 hours today..

Walked up and down the corridor with H, pushing my IV stand, just to get out of the room for five minutes. Feel very claustrophobic, hot and bothered already. Then was asked to shut room door, clearly someone has died on the ward and this is part of the process of removing the poor person. Door to the 'family room' firmly shut, relatives inside. Asked a nurse what Parkside offers in terms of palliative care and yes, you can choose to die here or go home. Weird conversation but vaguely useful to know.

And then it was stem cells time. R2D2 sized freezing unit comes into the room. Sterilisation procedures undertaken. Lots of aprons, sterile wipes, a device that defrosts the frozen slabs of stem cells and turns them into pinky-orange thick sludge. 8 bags of cells then squeezed incredibly slowly into my neck portals. Whole process took 2 senior nurses 3 hours. And yes, the very odd smell of sweet corn, which for some reason is produced by the cells, is still hanging heavily in the air. Won't be eating that for quite a while.

And a lot of peeing. All that fluid in makes for a lot of fluid out. I guess its some form of exercise?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Then followed by 4 more hours on a drip, shovelling all manner of liquids in post-transplant. Loooooooong day.

And so unsatisfying knowing that a) the worst is yet to come, as I'm waiting for the Melphalan to wreak its inevitable havoc on me some time in the coming days, and b) we won't know if the transplant has 'worked' for at least a few more months, as I see how I recover and if anything has improved. And then of course the long term question of whether I stay in remission and get any of my old life back.

Did I mention that patience is still not my forte??

On the upside, I managed not to puke during the process and my favourite Parkside meal is on the dinner menu tonight – moussaka. And Janine is popping up as H is out for dinner with the boys – my first non-hubby visitor. Woo for small mercies x