Day 22: Starting to talk to myself!

Wednesday

WCC: 0.3

Hb: 83

Neut: 0.0

Platelets: 23

Weight: 60.8kg

An uneventful day. I am making plans to escape as I feel I am going a bit loopy tonight!

It has been a quiet day - a quick visit from Anth and his Dad. However, Anth drowning in work at the moment (thanks to new software not working as it should) so his idea of a visit is to come in, open his computer and then start working! I on the other hand am craving a conversation...

I did start with emails this morning, but email traffic is almost non-existent (compared with me working). I never thought I would complain about emails reducing in number as there was always plenty streaming in constantly in a normal work day. But here I am, wishing for something to do that has some purpose. The problem is with work - trying to do it 'properly' here is almost impossible and it's not really practical to say OK I can do it today, but not tomorrow (due to possible unexpected turn of events). Add my eyes that won't focus properly on the screen or page and they get tired very quickly...

It has helped today that I have made the late discovery of the Handmaidens Tale. I read the book a long time ago, so know what's it about, but seeing it on the screen is very disturbing and confronting. I'd like to think that this is fiction and could never happen, but similar stories have come to life in the past, as the society around you changes and you can't believe it is happening, so nobody reacts until it is too late... Living in this bubble and watching the news and everything that is happening in the world - it is cause for concern. Thank goodness for cute animal videos on Facebook!

After a day curled up in the chair I decided it was time to move so I started doing some exercises with the elastic band. Started singing to myself - but feel it was in a 'bit crazy' way rather than anything soft and soothing (and if you hear my voice, there is nothing soft and soothing about it!).

So, pork sandwich delivered - but waiting on Anth to return with a fresh bread roll so I can make a REAL pork and apple sauce sandwich - that he bought from home in his earlier visit. Also keen to go for a walk around the hospital when he gets here. I wonder if tomorrow they might let me go walking by myself?

Medically - no blood today, so that was good.

Hair continuing to fall out, but only minimally. As I dried my hair after the shower this morning, I noticed my hair over the towel - so might have to be a bit gentle from now on! It's still coming out of my legs - but they are still hairy. If I pull at the hair on my legs, it just comes away, but if I rub them it stays put. They will probably be the last hairs standing!

When I arrived, mentally I was all ready for my hair to fall out. However, I thought it would fall out much earlier in the process so now, after 2 weeks in here (someone did say in the first few days that it's normally about 2 weeks)

it's like I have to prepare myself again and probably the reality of seeing it starting to come out, is a bit different to what I had thought I had prepared for. Given the hair on my head is so thick, I can probably lose hair every day for the next week and you still might not be able to notice much difference!

I know today that my next bone marrow biopsy is on the 11th October. This is the day before I head to Westmead to talk to them about the Bone Marrow Transplant - so they won't have all the information when I meet with them. The information for the biopsy was sent to home - so although I have been here for 2 weeks, the left hand still doesn't talk to the right. Yesterday the Dr's here were talking to me about trying to schedule the biopsy, but it had obviously been done as the envelope arrived yesterday at home. So today, I have to call the hospital (downstairs) to confirm the appointment on the 11th. Part of the paperwork is a 12 page booklet which is consent, patient questionnaire etc. Given I had a biopsy 3 weeks ago and filled in the same book, I question the admin staff (and yes, I already know what the answer will be) why I have to fill the whole thing in again, and surely the hospital could print out my history, medications, height etc and ask me to check it and either sign it off, or make any changes needed. Of course, this is not possible as it is a requirement for all patients to fill in the book - so I ask the reason why? Why is it necessary to fill the whole thing in again? Can she please give me a reason why the hospital can't use the history in the system to print out for checking. Poor admin lady cannot answer, as no one would have ever explained to her why it is needed - just that it is.

Why would I expect anything different? The hospital was putting new boom gates into the parking lot when we first arrived. They were due to start working the week we arrived. Here we are 2 weeks later, and the gates are still up! Now this admin inefficiency I can't complain about, as it makes it much easier for everyone turning up to visit, as parking is currently free. Who knows when it will be sorted. However, we know at the other Newcastle Hospital, if you use your private health cover you get 2 parking passes for visitors, so when we thought it was about to come in, Anth tried to find out what the deal was here, given it is all part of Hunter New England Health. Do you think anyone could provide an answer? NO!! Now the persons at the front desk - they weren't even given any information about the parking rates until 3.00pm on the day it was supposed to come into effect, let alone given any information to address any other question. Trying to phone the hospital to talk to someone about it was just a series of being transferred until finally no one picked up and the phone rang out.

Anyone that knows me, knows that this type of inefficiency, lack of organisation and lack of common sense does my head in. So, I know I am feeling OK when I start getting outraged by the system and the administrators who make such decisions without thinking the whole process through, considering the user or even considering that there may be a better way to do things.

So, for nothing happening today, I have had a bit of a rant.....