Wednesday, 15 August 2012

Eventful days

Just trying to get my breath back after the past few eventful days, some really awful ones as well as a particularly lovely one and some just very busy ones.

I got very wound up and stressed out by two major issues concerning Toby, that both came to a head within hours of each other on Friday. Two very different and very difficult issues, one concerning incompetence which led to an incident that left Toby very frightenend and distressed. The other, possibly with potentially more damaging consequences for Toby's health and well-being, concerns ill-judged decisions being taken by professionals, who have also decided it's best just to steam ahead without having the courtesy to let me know anything about it. Of course it would be nice, as his mother, to be kept in the loop, but it's the fact this this decision could seriously endanger his health that is my major concern. Both issues of course were entirely avoidable, but now they have happened they have just piled on more stress as well as a significant amount of extra work.

I'm well practised at fighting Toby's corner, and have had to do it for years, but to need to find the resources to do it all over again when I'm still only a few days past major surgery is a tough one. It has also brought into sharp focus the importance of putting a legal framework in place to ensure that I remain his advocate. Once severely disabled children reach the age of 18, they become "vulnerable adults" and the role of the parent is significantly diminished to that of "carer". The only way around it is to go to the Court of Protection and apply for a "Deputyship", which is very expensive and complicated, but is the only way of ensuring that parents, who know their children the best and have their very best interests at heart, can still have a real say in what happens to their now adult children. I've now started this process, but it will take around 6 months, and in the meantime goodness knows what other silly or dangerous decisions might have been taken.  It's hard enough for any parent in my situation to protect their adult children from well-meaning but wrong decisions, but for me, it is so easy for them to say to each other "oh, let's not worry mum with that, she's very ill, you know", so that I don't even know until it's virtually happened.

So I've had a lot of emails to compose and send, with others still unwritten. The trick is to try and wait until I'm calm and mellow so they don't read like a stream-of-consciousness-rant on the page. This week, that's been far harder than usual, but to send the email we'd all probably really like to send would be completely counter-productive!

The fabulously lovely day in the middle of all this other stuff was Sunday, my birthday, which was just perfect. I reluctantly decided that I simply wasn't well enough for a party, with all the cleaning the house and cooking nice party food that that entails. So instead we had an "open house" all day long. Nearly all my favourite people turned up, a constant stream of people coming and going, which meant that I could spend quality time with everyone, while the wine flowed very nicely in my direction well into the evening. The last guests left just before 2am, so I was wiped out for a lot of Monday, but it was so worth it!

Cancer news - saw Mr L yesterday who has taken out half my stitches - every second one, so the wound now looks significantly less gruesome. On Friday I'm going back for more surgery - this time to fit the portacath. Then on Monday I'm off to meet the chemotherapy team for the first time to find out all about the next part of this magical mystery tour.

Next week, WM and I are actually going away for a couple of days. Still cancer-related, we're doing a 2 day course of alternative treatments and therapies, which will also focus on lots of self-help stress busting things (should have done it last week perhaps!) as well as good immune-boosting eating. Somehow I doubt that those doughnuts will feature very heavily, but a girl can dream. Mostly, I'm going to use the two days as a chance to step back and try and get my head around everything that's happened recently. They always say relaxation and visualisation is great for healing, but my mind just never gets the chance to slow down or stop to enable that to happen. Maybe next week it will, I'll let you know.


  1. Good girl, missis! As much as life is continuing in its hardships, the "normality" of it, and your ability to deal with it is one of your many and true strengths xx

  2. Yvonne it was great to see you yesterday and yes worked out how to access your blog (not technology minded i leave that for everyone else to worry about!). I hope you have a relaxing few days, even if it is cancer related, but you have made it sound like a kind of spa and i am thinking mmmm i wouldnt mind coming (ha ha).
    Anyway lots of love and hope to see you and Toby soon - Laura x