That’s not to say that we haven’t heard anything, I have been in contact with Jacksonville on a couple of occasions this week but it seems that they are waiting for a response from the UK before they can progress our referral any further. This piece of information prompted Hayley and I to go hunting for Gail our radiotherapy consultant when we were at Addenbrooke’s hospital for Camille’s eye test. It seems that both of our main consultants were off for the entire Christmas period, as was our specialist nurse so we could not find out one iota of information on where the holdup is and how long it is going to take to resolve. It does seem a little mad that we could be delayed by up to two weeks because of a couple of bank holidays. If it is not the Christmas break that has caused the delay it could well be at Alder Hey’s end. The first and last time I met Gail she was commenting on how difficult it was to get hold of a secretary responsible for Mr Mallucci’s correspondence. I have no idea whether Mr Mallucci’s secretary is still in place or whether the position has been cut or frozen, but whatever the case is, it is a good example of how important administrative staff are within the NHS and how cutting these jobs could be a massive mistake. Look how we could be affected in this position and the knock-on effects of this delay; because of one administrative position we could be waiting on information that one or two consultants could be chasing on a regular occasion, while this is going on Camille is continuing to have medicine, nurse time at our local hospital and doctors appointments that would need to be sat again after radiotherapy. On top of that we have my company almost on hold waiting for me to go, Lucia’s school headmistress and the county council having to do extra work to reorganise her time off and actually it may well end up being the very highly paid consultant who ends up doing the administrative task. It doesn’t seem very efficient to me.
Anyway, we will continue to wait. Hayley has struggled over the last two weeks with this period of not knowing; she has this massive fear that all this time we wait with no treatment is resulting in Camille’s tumour beginning to re-grow. She has put the neck pain from a week or so ago down to this and anything else that Camille may or may not do. The level of anxiety is again pretty high and I have no idea where it comes from, how to help or what is going to relieve it. I guess that call to say “book your flights” is the only thing that will help.
Camille’s eye appointment with the consultant at Addenbrooke’s was pretty successful with her weaker eye showing some real improvement over the last few weeks. The patching of her good eye to force the other eye into action is clearly paying off even though Camille is very upset when the patch is put on and just as upset when you have to take it off. We’ll continue to patch for the period we are away, which is of course “just around the corner”. It is funny how you get used to things like eye patches really quickly, I rarely notice that Camille is wearing one now and even the constant rubber-necking and stares we get in supermarkets and out in public don’t even grab my attention. There are the odd occasions where people will really make an over exuberant motion to get a better look at her, it’s bizarre, they may as well tap me on the shoulder and say “Excuse me mate, have your realised your daughter has got an eye patch on? Oh and while you’re at it, does she breathe through that tube coming out of her nose?” I wish it was just those sorts of questions that people are thinking, but you know very well that they are wondering what is wrong with her, imagining all sorts of grim and horrible illnesses; none of which are probably as nasty as the truth.
We ended up having New Years Eve at home and as the Mother-in-Law was spending her final night with us of her stay since being in hospital, we sat down had a nice meal and then treated ourselves to Sky Box Office and the film Inception. The film is pretty complex to follow and to understand the significance of specific events that happen throughout the film, so from time to time we did have a quick pause for a recap to assist the mother-in-law in keeping up with the ebbs and flows of the storyline. I don’t want to sound condescending but it was a difficult film to keep up with, especially if you are texting throughout and sleeping for five minutes out of every twenty. She probably realised that Leo was in it, that’s about it.
Camille has been a monster at bed time for quite a few nights, not dropping off until 11.00pm most nights and later on occasion. So New Years Eve, just as Camille dropped off we sat down to watch the final parts of the Hootenanny before the midnight countdown. All of the country would be singing Auld Lang Syne in a linked embrace, watching flashing lights, fireworks etc. Not in the Camille household; as Jools Holland counted down and cheered, I made the sudden movement forward, lurched if you like, cupped my can of Carlsberg in my right hand and flopped back into the sofa filling my original position. That’s about as exciting as it got.
Well there is one thing that is definitely around the corner and that is next week and of course work. So when the office opens tomorrow, Hayley will be all over Addenbrooke’s like a rash, shimmying them along to get us out to the US as soon as we possibly can.