My administrative sense of organisation and sense has been well and truly offended by today's events - in case you didn't know it, I am an administrator and work within the Special Educational Needs (SEN) department of the IW Council's Children's Services department. Part of my job is that I am responsible for arranging appointments for children to be seen by an educational psychologist (EP), once the request has been verified and approved; part of this remit is to make sure that the paperwork is up to date, consented to by parents, completed correctly with background information and up to date files. This means that the EP has a fairly good pen picture of the child and its background, school history, attainments etc as a baseline for where to begin their assessment. It would seem pointless, wouldn't it, to send someone in to see a child without all current relevant knowledge to hand? Well you can understand my offended sense of organisation then when I tell you about today's fiasco of a trip to QA Hospital in Portsmouth.
We've been waiting for this appointment since we saw Mr O on 19 August - note, that is twelve days ago - and were contacted last Wednesday - that's seven days ago - by QA Hospital to arrange to go over to meet the Urology Consultant today at 2pm. Phew. Great, we thought, another step nearer to knowing what the treatment and immediate future will hold. So we let ourselves believe that after today's meeting we would come home with a clearer plan and be able to timetable what is happening and when. Naive? Optimistic? Or just plain stupid? Well all three really, because when we got in to see the consultant - a youngish chap called Mr H who I am sure has knobbly knees because he is very tall and thin - after a bit of what I now realise was stalling he ummed and ahhed and told us that he couldn't tell us what the plan was because a radiographer needed to look at C's MRI scan results to ascertain their opinion - THESE WOULD BE THE SAME RESULTS THAT MR O HAD IN FRONT OF HIM ON 19 AUGUST. Mr H admitted that the results were in their system, but the radiographer hasn't seen them yet - DESPITE US RECEIVING THE APPOINTMENT DETAILS A WEEK AGO. Can you understand why my sense of organisation is offended??!!! Why the hell did QA not make sure that everyone who needed to see the scan results HAD seen them before we got there; or if that wasn't possible, put off our appointment until they had done so? Why? Is it really that difficult? Mr Knobbly Knees managed, in half an hour, to almost completely dispel the positivity and upbeat attitude we've managed to muster in the last fortnight in one fell swoop. Rubbish. And so we left QA on the understanding that Knobbly Knees would have a discussion with the radiographer tomorrow morning and ring us in the afternoon. We hope. Or is that being naive too????
Needless to say that the journey home was fraught as we were both quite angry, disappointed and frightened again. We've gone backwards as far as dealing with this cancer is concerned, when we really wanted to have taken even a tiny step forwards; perhaps this can happen in another 24 hours, but it's very difficult to keep motivated and upbeat when you have to keep waiting and waiting for someone somewhere to tell you what's going to happen. There didn't seem to be an awful lot of urgency about our situation today, and we don't think time is something to play with right now - just get on with it!!
And the day had started so well - I had a lovely walk back across the Downs with Sidney; the sun was, and still is, shining and it feels like a beautiful late summer day. C was quite positive this morning, and less jittery once we got going to the catamaran. How quickly things can change.
And so we need to haul ourselves up again and wait for tomorrow's phone call. C has spoken to Sonya, his nurse specialist, and she was also quite annoyed at what has happened and was going to speak to her manager saying that it just isn't good enough. Reassuring for us obviously, and hopefully it will save any more expensive, pointless trips across the Solent. We really don't need any setbacks at the moment (if ever) so if it makes a difference it's all to the good.
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