My Journey with MDS

Friday & Saturday D minus 6 and D minus 5

09/05/2015 12:07

Friday Day Minus 6 

Despite the excitement of the general election I still had a good nights sleep!!! It was on TV all day as well so a back drop to the days events. Fludarabine this morning and final session of Campath later today, which I am pleased to say went without any impact.  Generally feeling tired but appear to be doing well. Measuring of inputs and outputs continues unabated.  

Nice to see Cate this morning, fresh from success on the Isle of wight challenge - what a great job she and the team did in raising funds for MDS.  Good to catch up. 

Fell asleep after lunch before getting Platelets this afternoon alongside my shuttle runs to reduce fluid retention. Followed Bracknell Council election results with interest on twitter well done to comms team. 

Sally back this afternoon with my daily washing and bits and pieces. As everyone knows its all quite an ordeal for family and Sally is doing fantastically well juggling everything with daily visiting. 

Did a circuit of my exercises this evening, which I was pleased about. 

Saturday Day minus 5 

At the risk of jinxing everything, seem to be able to sleep ok including coping with 2am vital sign checks. Staff are good at getting IV changes to an absolute minimum during night which is excellent.  

Tiredness seems to be ever present currently and I am beginning to get that metallic taste so often linked to chemotherapy.  I was freed from "Baxter" (my new name for the IV stand and pump) by 8ish today - seemed strange having so much freedom this morning. Have I mentioned what  a style icon I look like in my "ted stockings" ?  Perhaps a picture is in order. 

Going to get a unit of blood today apparently to keep Hb topped up. 


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