Friday 7 February 2014

Silly Questions

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. 






To buy your copy of “The Special Parent’s Handbook please click on the link to the Amazon page below




If no link appears above it may be due to your AdBlock settings

16 comments:

  1. Lovely photos Yvonne, particularly the one where you are hugging each other. I've been thinking about having my photo taken with my 8yr old son now that my hair has grown back a little but wondered if it is too soon. But your photos have given me courage to go ahead and look into it more.
    As for bureaucracy - what can I say? It's like the insurance industry....services that supposedly exist to HELP the public but in fact put up barriers at every opportunity. It's a disgrace and I'm sorry you have to go through this for your sons.
    Take care and hope you have a good w/end.
    Anne-Marie x

    ReplyDelete
    Replies
    1. Thank you Anne-Marie, and I'd say - Go for it! If he's anything like Toby, he'll love the whole session, and you'll have a memento for ever. I got them done because I'll need publicity shots for the book, and I'm thinking of using one of the Toby ones on the front cover when it's published. Hope you have a great weekend, too, and thank you once again xxx

      Delete
  2. Hi Yvonne, delighted to hear your results went well:-) I love the picture of you and Toby hugging, so much love and trust in that one, also the one of the two of you laughing your hearts out, you are an amazing mother and a wonderful woman x a

    ReplyDelete
    Replies
    1. Thank you Adrienne, the results were a bit a of relief, by the time you get to the day itself you think they'll tell you you've got an hour or two left....! The photo shoot was enormous fun, and Toby had a ball. The one I love best is where his face is covering mine - he is the kiss-blowing King, and this is his way of getting me to do all the work while he takes the credit of blowing a kiss....! However another friend who saw it commented that she loved it because it was like Toby was saying, "Actually, it's all about me, Mum"!. Which one should go on the cover though, that's the big question. How are you and your and the little girlies? xxx

      Delete
    2. We are great thanks, they are sitting here beside on the sofa eating my popcorn! thank go they don't like wine:-) The one to go on the cover should be the one you like the best, they are all brilliant pictures but you know best. have a peaceful and restful weekend x x a

      Delete
  3. Thank you. Popcorn AND wine? I'm on my way over! Thank you, hope you have a lovely weekend too xxx

    ReplyDelete
  4. Might have a bit of chocolate now too... have to keep up my public service duties!!
    xx

    ReplyDelete
    Replies
    1. Open the door, woman.... can't you hear me knocking already!!! xxx

      Delete
  5. Come on in, your sanctuary awaits........ x

    ReplyDelete
  6. I feel so angry reading this Yvonne - talk about bloody bureaucracy! But on a happier note, the pictures are just fab - love the second one of you and Toby hugging - the love just radiates from it, and the last picture is gorgeous - you can really see the bond between you both. Love to you - Marie x

    ReplyDelete
    Replies
    1. Thank you Marie. The paperwork is just non-stop endless and it just sucks all the energy and vitality out of me like I can't even describe. Thank you for your lovely words about the photos too - Toby had a great day when they were taken and he really engaged with it all, so his personality really shines out of some of them. Im hoping to use one of them on the book cover. Hope everything ia great with you this week xxx

      Delete
  7. Beautiful photographs, just beautiful. And as for the schools and the forms, argh!! Maybe you can photography that yearly form to fill out, and then just send them the photocopied version next year? Probably not. The loops they make people jump through is totally ridiculous. One page at a time, and I'm wishing you some sunny skies and cups of coco on the side to make it go a little easier. ~Catherine

    ReplyDelete
  8. Hi Catherine, thank you. I have just this minute finished a 3-day long filing marathon, a two-year backlog (since cancer diagnosis) and I now have emptied all 7 huge plastic boxes that were each filled to the brim of papwrwork. It might be gone 1am and I'm exhausted but a little part of me wants to dance all night long! Back to tje form-filling tomorrow but at least I can now find any supporting paperwork very easily. Good idea of photocopying but its never that simple cps they change their forms or want different info. At least I can nearly see those sunny skies at the end of the tunnel. Thanl you too for your lovely comments about the photos... I love the ones of Toby xxx

    ReplyDelete
  9. Wonderful photos.

    Excellent though depressing blog.. I can't help thinking that the real aim of all the form filling is to maximise the chance that people will mess up or give up and save money.

    ReplyDelete
    Replies
    1. Hi Jane, Thank you, and I think you're right. If they get you to jump through enough hoops a lot of people will give up and just not bother. Love Yvonne xxx

      Delete