So we end today with thd planned events of the week not quite happening as they were supposed to! I did get my car picked up to be repaired as planned so that was good. The reluctant community nurses came to take Harry's blood. It was clear when they telephoned to arrange the time to come they thought it was just me who wanted them done, which I did, but the hospital organised it as they thought his blood counts would drop by sunday! On arrival of the nurses I was just on the phone to ward 76 having received the news that there was a problem and Harry's bone scan would not take place tomorrow and Wednesday. I found this news devastating as it means that on 10th feb we would not get all the results needed and was not sure if this would impact on the planned harvesting of his stem cells in feb etc. so I was fighting back the tears when the nurses arrived. They seemed fed up to be here and when I explained why I was fed up, they were not empathetic at all. I explained that Harry's blood counts have been precarious of late due to the cumulative effect if the chemo and the nurse responded by saying it was easy to get paranoid! Well at 2pm when I was telephoned with the results to say his HB was 6.7 and so needed a blood transfusion I wanted to shout at the community nurses! I know when Harry's bloods are dropping, I live with him and can see his behaviour deteriorating to that of a tired boy. Like a child at bedtime, when they want to carry on and can be giddy, but seconds later crashing and burning and being tearful! I guess with my current emotional state I have the tendency to over react, but I felt the nurses had truly no idea what we were going through and seemed to have changed from the helpful nurses they seem to be in the early days. Whether this is because they are understaffed and overworked like most of the front line services I am not sure. I know we live the furthest point from their base at Hunslet, but I do not make the boundaries up nor located the dam office! At this time support is what we need from professionals not to feel a burden!
We decide to plan the transfusion for tues am seeing as his original
Scan was cancelled, save having another late eveving, plus I had Callum and Tuesdays is his nursery day.
So we had a birthday tea at mum and dads today, just in case Harry not home till late tomorrow, shouldn't be, but these days you never know! It was Harry anyway who was insistent on me doing something! When he asked how old u was , I said 36 and he replied that us old! So nothing like your 4 year old for making you feel good!
Then just before coming home, we get a call from ward 76 and they are trying to rejig someone else's scan so Harry can now be fitted in thurs and Friday! Apparently the reason for the delay is that the dye needed has not come from Germany, something to do with the manufacturing company! Anyway, our consultant is desperate for the bone scan to go ahead to keep on target for the bigger plan if the news is good!
I don't need Alton Towers for a roller coaster ride, life itself is just that!