Friday, 7 February 2014
I'm a very lucky lady today - results day at the hospital turned out to be far better than I'd dared to imagine. The naughty little lump of cancer on my spine hasn't got any bigger over the last six months, which means that the on-going treatment is working. Totally brilliant news. The only fly in the ointment is a little 7mm something-or-other they've spotted in a single lymph node in my groin. They can't tell if it's another little cancer spread or something innocent like a temporary inflammation, so instead of waiting 6 months for the next round of tests, they aren't taking any chances, and I'm having another PET scan in 3 months, which will decide if it's ominous or not. I've already decided it's not. There's absolutely no point in scaring myself stark-raving stiff every day for the next three months over something that might be absolutely nothing, so I'm banking on the nothing completely for now, and enjoying the counting my of blessings that everything seems pretty marvellously hunky-dory at the moment.
I do silly things at these meetings like ask daft questions that are enough to frighten the living daylights out of anybody when the answers aren't quite what I was hoping for. Like today, "So if the Herceptin and Letrozole double-act is working so well, does that mean it might work forever?" Why do I let the words roll off my tongue when I really didn't need to know the answer, which is "No, that's very unlikely". Oh. Apparently, after a while, and it's a different length of time for everyone, you just become resistant to the drugs, and they stop simply don't work anymore. I'm such a big mouth sometimes.
The other thing is that old chestnut, exhaustion, raised it's ugly head all over again. I'm to slow down apparently. Ha ha ha, tell that to the Government who keeps on and on chopping down trees just to generate more and more forms for me to fill in. I'm drowning in them. Not coping at all. Is this David Cameron's dastardly plan to save NHS funding by ensuring I'm crushed under the weight of them so he doesn't have to fund my cancer treatment?
Today, after a Toby college meeting followed by the Results Moment (which is never a moment - nearly 3 hours we spent at the hospital all together), I got home to 4 urgent forms I've managed to push around the dining table in procrastinational brilliance for several days.
Firstly, I'm one of a handful of families nationwide who have been picked, at random apparently, to be audited by the Customs & Excise Tax Credit department. Somehow, I have to provide evidence that both Adam and Toby have been in full time education for the past 2 years. Well of course they have, and the government has been paying for their schooling, so there must be an easier way for a government department to collect the evidence. Over the past week or so I've picked the form up, read it again, and tried to find the elusive "evidence" that fits their criteria. Boxes and boxes of paperwork I've waded through, I've tooth-combed through ring-binder after ring-binder from shelves I can barely reach even from the top of the step ladder. "Why didn't I just ring the number on the letter"?, I hear you ask. Well I did. I think altogether I've rung it around 25 times over several days, and it's either constantly engaged, or you hold on for 20 minutes until they cut you off.
So I rang them again the minute I got in, and guess what? They answered first time. It turns out they want me to contact each of the 4 educational establishments my boys have attended between them over the past two academic school years, and request that they each send me a letter confirming a whole shedful of specific information. They want this all by next Friday. "Can I have an extension on the date please, because the letters won't arrive that quickly?". I asked. No, they told me, and then went on to explain that they can give me an extension, but not until two days before the deadline, so I'll have to spend all day next Wednesday trying to get through to them instead.
So I then phoned all the schools and colleges. Only one was able to say, OK, I'll do it now for you and get it in the post by the end of the afternoon. The others want me to put this request in writing. One of them wants me to go into college myself so I can fill out a "Request for Information" form, and I will have to produce proof of ID for both myself and my son at the same time.
On top of all this madness, Toby's DLA form needs completing all over again. Without DLA he won't be entitled to any of the other services he gets, so it's absolutely essential it's completed, and again, we're nearing deadline. It's 40 pages of mind-numbing questions, with large boxes for you to write essays in each one. A total of 33 essays in all. Toby has disabilities he was born with. They aren't going to go away. Some people are only asked to fill out a new form every 10 years or so. Some people, if they have particular medical conditions that are on some sort of Gold Star type list of favoured disabilities don't have to fill these awful forms out at all ever.
Yet, for some ridiculous reason, they make me fill out Toby's DLA form every single year, probably just because he is the only person in the world with his particular condition. Maybe they think that this makes him so special that they honestly believe the disability fairy might choose him to sprinkle the "get better" fairy dust over one starlit night in Disneyland fashion? It does make me cross.
The other horrid thing about the DLA form is that it is so negative. To qualify, you have to write about all the stuff Toby struggles with or can't do at all. Thirty-three times over. As his mum, I want to tell the world how fabulous my children are, not to focus on the tough stuff, and to be honest, DLA time is the pits. Having to describe your bravely resilent and resourceful kids in such a depressing way really gets to you and really hurts. It's not just me, every parent I know dreads the DLA time for exactly the same reasons, and it's simply just not fair.
These are only two examples of about 70 must do's on the admin list, several of which, like the 5 for today, are mega-urgent.
So how can I rest and take it easy? Admin just sucks out every last shred of my energy and vitality, and totally exhausts me. It's all so pointless, too. Somebody somewhere knows full well that both Adam and Toby were at school and college and what they were doing there, and loads of people also know that Toby has enough disabilities to last a lifetime. In our automated, big brother society, there is just no excuse to expect those of us who are closest to the edge of not coping, like parents already overstretched in caring for severely ill children or those with disabilities, to fill out endless, pointless, mindless forms for absolutely no good reason whatsoever.
It's not just the forms, either. Once they are completely, you have to find countless original other documents to go with them, and then photocopy everything before sending it off because you would be staggered at how often these forms are simply lost by the department you've sent them to. Then the filing, mindnumbing, boredom that takes nearly a day a month, or in my case when I haven't had the energy for over a year, seven boxes of forms which will probably take a whole week to file properly. You have to keep everything - absolutely everything, because somebody will ring up and ask for proof of something or other to tick their box or your child won't get the right piece of equipment or the correct help in the classroom. Every parent of a child like mine should be given a government-funded standard-issue filing cabinet, a part-time secretary or at the very least, a heavy-duty box of matches and a monthly case of very good wine to drown their sorrow in.
So how can I rest when all these faceless bureaucrats keep clicking their fingers and giving me more stuff to churn out for them? How can I ever put my feet up and drink cocoa and watch daytime television with Jeremy Kyle for company? Basically, how can I ever recharge the batteries enough for my cancer to sleep soundly while I boost my immune system, eat properly, sleep properly and chill? Dream on, because it will be never.
However, just to cheer me up, here are a few more of the proofs from our photo session a few weeks ago. I'd love to know what you think of them.
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