Peter’s Hospital Diary

It’s been a strange week, but really good having my parents visiting and helping me out.

Yesterday I went back to the hospital to pick up the Ibrutinib and have a blood test. I also took the opportunity to chat with one of the clinical nurse specialists (Amy) abut some of the otherside effects (i have some lymphoedema in my ankles) so it was suggested I wear the compression socks for a while, and confirm my next clinc will be a week on Monday (this Monday being a Bank Holiday)

My blood results camee through and were rung through to me by Amy. No real change apart from my WBC which is still creeping up. However she referred them to Prof Johnson and she rang back later to say that he wasn’t concerned. It could be a temporary side effect of re-starting the Ibrutinib.

However, as its over 10 days until clinic, and I have some blood test forms, I rang Amy this morning asking if it would be a good idea to have a blood test next week, just to keep an eye on things. She agreed tat it would, so I’ll go in next Wednesday. Got to be pro-active! 🙂

My parents have just left, having stocked up my fridge!

Going out is a bit challenging, partly through lack of confidence and I need to develop coping strategies for the loss of peripheral vision. Thee are two problems, one is that anyone overtaking me (on foot) on my left hand side doesn’t appear until they are about three feet ahead when they appear out of nowhere – very disconcerting!.. The other is people who suddenly disappear as the move into my blind spot and I then bump into them. Its all a question of situational awareness! The other thing is to ensure I close cupboard doors as I might not see them open and bump into them. I guess I need to move slowly and do a good scan of an area for potential hazards. All takes time.

But overall, and with cautious optimism, Onwards and Upwards! 🙂