Health scareDid you know I've got a new health scare that might or might not be another spread of cancer? It's made me very poorly on and off for the past couple of months or so, and then it all got very serious and became infected. I'm now waiting for biopsies, operations and a proper diagnosis of what's going on. I think I should have had a letter weeks ago, but I just haven't had a minute to chase it up. When you have stage 4 cancer, although it's nice to have things to take your mind of things, I've had so many other things to worry about lately that the whole cancer thing really has had to go to the back of the queue. Tomorrow, I promise I'll make that phone call and see whether or not I've been forgotten.
Please don't ask in too much detail what it's all about. I try to be open and honest, but this is just too embarrassing to talk about and expect you to keep a straight face. It's bowel related. Ha ha ha not. It was hard enough having dozens of doctors taking it in turns to peer intently at my boobies in the last few weeks of having two of them. Now they want to peer at my bum. Dignity and decorum go out the window completely with cancer, and I don't think you ever get used to it or comfortable with sharing the best-hidden parts of your body with total strangers, no matter how well qualified those total strangers are. The idea of talking about it outside of a doctor's room fills me with cringing dread, so I need to quickly find a way to say something without telling anything, and for someone as naturally open as I am, that's the very hard bit.
Beyond my controlNever mind, there's so much else going on that there's plenty of other things we can talk about. I'm on the brink of exhaustion all the time and stressed up to the earlobes and not very well, but when life happens you have to be there, take it on the chin, deal with it and cope whether you want to or not. Sometimes I look at the way things are in my life and it's hardly any wonder that cancer might be winning. A little bit more control over my own life would be very nice sometimes, to be able to choose what I do and when, make my own priorities every day, and actually be allowed to see them through to fruition. Instead, I'm fire-fighting, responding to crises, and mainly sorting out the mess other people have imposed on my life. It gets wearing, it's very frustrating, and it's something that's really hard to accept, even though I've been living a version of this life from the moment Toby was born all those years ago. When a child is as profoundly disabled as Toby is, you have to rely on other people. When those people don't always join up their dots, somebody has to, or Toby will pay the price. What mother would let that happen? It's a joyless, thankless task, and it means that parents in my situation come from a different starting point. Before we can start doing the things that we want to do, the things that make our souls sing, we're sorting things out, putting wrongs right, making things happen - but sometimes the sheer scale of keeping all those essential balls in the air just spills over into ridiculousness.
Another move for TobyToby has to move care homes. Long story, and maybe when the time is right I'll do a longer post about it, but it's dominated virtually every waking hour since Christmas week.
Care-home hunting is like a full-time job for an entire office-block of people. I've read 70 CQC reports. I've spoken to 50 care home managers. I've visited 12 care homes. I've written a report for each of them for our Local Authority, as well as a more generalised report about the search itself in terms of expectations and success-critieria. I've had countless meetings with Toby's social worker and other members of her team. The emails I've written and the forms I've filled in would rival the word-count of War and Peace.
I've taken Toby back to visit the best places we're seen. That was emotional. Suddenly this whole care home search became real - it stopped being a paper-exercise and became something much bigger. It's a huge responsibility. Toby cannot talk, he doesn't understand that his little world is about to be thrown into turmoil all over again and he will have to readjust to new people, new routines, a new environment and different ways of doing things.
Luckily there was one place where he just looked so happy and relaxed. The staff responded to him with warmth and enthusiasm, and he soon had them playing games his way with him. While Malcolm and I chatted to the care home manager at the kitchen table, Toby took himself off and wandered around, until finally settling down on an armchair near some of the residents, perfectly content and relaxed. It's the closest I could get to involving him in the decision-making process, but it worked better than I could ever have expected.
That's the place we want, the local authority have asked them to start their assessment on him, and the ball is finally beginning to roll. It's taken nearly 3 months to get here, and there are still a lot of things that can go pear-shaped between now and him moving in. They may not want him, although they dress it up in nicer words along the lines of "unable to meet his needs". This place has an upstairs bedroom, so he has to have an occupational and physiotherapy assessment to ensure the staircase is safe for his reduced mobility.
Yesterday he hurt his foot badly and today he still can't walk, and I can see a shadow of impending doom looming unless he fully recovers by the staircase assessment day on Thursday. If he passes that test, there are still about another 100 things that could go wrong, and that's before we can even begin to think of the funding fight that has to be overcome before anything happens. I'm holding my breath and crossing my fingers. I just hope I don't have to add banging my head against a brick wall to that list before the next couple of weeks are over.
Fire-fighting - literally!
Then, three weeks ago, my father accidentally set fire to his house. That was a huge shock, but luckily, despite some minor health-related smoke-inhalation problems, Dad got out safe and well. He's living in our house - he and I haven't lived together for over 30 years. It's all a bit surreal, particularly when he tells me off for things like being on the phone for too long (Dad, you were allowed to do that when I was 14 and you were paying the phone bill, but I'm a grown-up now and this is my phone....!), but he makes the best cup of tea for miles, and we're all thoroughly enjoying having him around.
On top of everything else, just to make life even more interestingly diverse, directly behind our house they are building a new development, which hasn't been much fun for the last couple of months. The noise is horrific and relentless, and so close to our house it we can feel every thud and clatter. Sometimes the house shakes, and sometimes it's so bad you can feel your own spine revererating. The builders working on the site don't seem that competent or cautious either. So far, due to their negligent drilling through things they shouldn't be touching, we've lost electricity for whole days at a time, we've lost our internet connection and our land-line telephone for nearly a week, and they also cut through the cable that brings TV into our house. Oh, and the gas leak too - a whole sleepless night of the gas board noisily digging up the road while they had to fix the damage the builders had done before anything really serious happened.
Now, the construction company wants to erect a crane which will loom over us for the best part of the next three years, swinging freely over our house and garden. So more meetings, emails, phone calls, emotion, discussion, rallying of the troops among the neighbours ..... and we still aren't any further forward. It looks like it will happen, we'll have to sign an agreement and get a few paltry pennies a month for our co-operation, but with it will come a whole new raft of worry as to whether they have secured every load properly or will something heavy fall and flatten our houses.
A & E family day out
Yesterday both Toby and Malcolm ended up in A & E. Toby with this mystery foot injury - his third similar injury since he's lived away from home. Malcolm is very poorly indeed, I've watched him get steadily more and more unwell over several days and yesterday I took one look at him and I just knew this was serious. They managed to bring down his raging temperature, they gave him i/v antibiotics and a litre of saline through a drip, and now he's back home but still really unwell. While I've been writing this, I've had to go over and see Toby too - he's started being sick. Is it related to the foot injury in some way? How much pain is he in and can pain alone cause vomiting? Too many questions to try and second guess. I'm going over again in a couple of hours to decide if he needs to go back to hospital tonight or if it can wait til the GPs surgery is open in the morning.
Let's blame mum
It was Toby's second trip to A & E in 5 days. The one on Monday caused no end of stress. No one at his current care home can change his gastrostomy feeding tube, so I always do it. No big deal - I've done every change since he was a baby - I could do it in my sleep and standing on my head, so I thought nothing when they asked me to put a new tube in on Saturday. However, by Monday, some sort of miscommunication whispering campaign seems to have got going, and specialist nurses and our GP were demanding that the care home staff took Toby straight to hospital to ensure there was no internal damage, and that I'd changed it properly. Hello? Why? What?
Suddenly I was plunged into the middle of a nightmare where it seemed that none of the professionals involved with his care trusted me to change his tube. Phrases like "compromising his safety" started being bandied about, and next I was being interrogated over the phone by someone demanding to know what training I'd had and how I could prove it. These things are serious - I know from bitter past experience that before you know where you are a parent is up in front of some local authority kangaroo court on a trumped-up safeguarding charge. By the time it gets that far, all the professionals will have closed ranks, and the finger is firmly stuck in the "pointing at mum" position, which means that nobody else can possibly be implicated in anything whatsoever.
So everything had to stop for the best part of three days while I tried to unravel the chain of events that had escalated such a minor detail into some sort of life-threatening emergency with me somehow portrayed as the vilified perpetrator. To be perfectly honest, fuming, incandescent with rage and livid doesn't come close to the fury I was feeling, yet in these situations fury gets you nowhere. Instead, you have to swallow the anger, present as Mrs Nice and Utterly Reasonable, and use every last vestige of tact, diplomacy and social skills that you can cobble together as quickly as you can. Yes it took three days of phone-calls, emails and research to get back to square one, which was that Toby's tube was fitted perfectly correctly, he had never been put in any danger whatsoever, and that I am perfectly competent, capable and responsible to change each and every tube that ever needs changing again. What a total waste of time.
However, this week I did hear of another looming safeguarding meeting, this one about Toby's second unexplained foot injury incurred at his current care home. Another half day stolen away, more reports to read, things to get my head around, mustering my wits about me so that I can ensure that when the music stops the fingers aren't all pointing at me. They can't be, I wasn't there, but sometimes people will say whatever they have to say to shift blame and wriggle out of responsibility.
My workshops launching
What I'm really trying to do is to find time to write my next book and launch my new series of Workshops, but it seems like the world and his family want to conspire to stop me ever getting on and earning an honest crust. That's the fun, exciting stuff, the stuff that makes my soul sing, gets me excited and fills me with energy. I'm sure it's what's keeping me alive, whereas everything else just drains me of energy.
If I could just win a little bit of time back so I could focus and really get this off the ground, I'm sure everything else would fall into place. Instead, I'm walking through treacle sorting out other people's messes. Of course, when they are Toby related, I wouldn't trust anyone else to sort them out, so I have no choice, but that doesn't mean it's any less frustrating. I've got over a hundred lovely people who are waiting for replies to emails, tweets, messages and texts, but there aren't enough hours in the day. As it is I'm lucky to snatch more than 6 hours sleep most nights, and trying to work in a full house of lovely chatty people all day long isn't easy either.
The Workshops? Oh I'm so glad you asked! I don't know how long I have left on this planet, and I want to spend as much time as I possibly can in helping to improve our Public Sector Services be more responsive and appropriate to the families who most need their help. I've designed a series of workshops for parents of disabled children. If we can make families stronger and more resilient, they will be better able to assert themselves with the teams of education, health and social care professionals who work with their children.
I'm now working on a parallel series of workshops for the professionals. When you have a child like Toby, it can all get very "them and us". That leads to mistrust, miscommunication, and poorer outcomes for everyone - stress for the adults, poorer decisions for the children.
We're moving into an era of less public sector spending, so we have to do it differently if we are going to support the families most in need. I see a future where kindness, partnership working and simplicity dominate how things are done rather than wasted resources being squandered on policies, procedures and processes, with families back in the centre of things instead of endless committee meetings and tick boxes. These simple changes cost nothing, in fact they save money, but the difference they could make is priceless.
The nice bits
There have been other fab things going on - here's a whistle-stop round-up.
A wonderful Saturday lunch with my breast cancer twitter-sisters! They've kept me going through thick and thin for nearly 3 years now, tweeting support, encouragement and love in 140 character bursts. Well it was a highlight of this decade to actually sit down together for a whole afternoon and natter, chatter, laugh and hug the hours away.
I also met a very special lady while she was on a rare day-trip to London. Marie Ennis-O'Connor has been there for me every step of the way since I was first diagnosed with breast cancer, through to starting to write this blog, and she has been holding my hand and cheering me on all the way through The Special Parent's Handbook Adventures. Marie was everything and more that I thought she'd be, and we hugged so hard to make up for the three years we'd waited to say a proper hello
It was the week of Awards for the Newbold family. On Thursday I was the proudest mummy when Adam won a Jack Petchey Award for his support work in rehearsals and on stage with Action Replay, the adult learning disability drama group under the Savvy Theatre Company umbrella. Adam was one of King Arthur's knights, and make sure that all the other knights were always on stage with him, in the right places and saying and doing the right things.
Letting everybody down
It would be great if you'd like to keep in touch through my FB pages
Coke .Floats & Chemo Page for cancer information and support
Special Parent's Handbook Page supporting special needs parents