Panel

I don’t think there’s now anyone left on the planet who doesn’t know about the result of fostering panel, but nonetheless I realised that I haven’t yet blogged about it, so just in case anyone has been in space these past two weeks, or wants a more in-depth version of the experience itself, here goes:

We were scheduled for panel at 10am, so had arranged to meet our social worker there at 9.45 so we’d have a bit of time to prepare before being called through.  At least, that was the plan.  What actually happened was that we got there at about 9.30 in the pouring rain and were shown through to a room with a huge table and a drinks trolley (tea, coffee, hot chocolate, not bourbon, gin, rum...which may have been more useful under the circumstances) There was a smartly dressed woman sitting in there already, who I assumed was there for the same reasons as us, i.e. waiting to find out if she’d been approved to foster, but it turned out she was actually a social worker, going to panel to present a ‘match’.  She was waiting on someone else to arrive, who had apparently gone to the wrong set of offices, so even though we should have been second on the list, someone from the panel came through to ask if we’d mind going first and when we said that was fine, they sent word up to our social worker, who was upstairs in her office, grabbing a coffee.

So it was a bit of a whirlwind- one minute we were slurping drinks, analysing our nervousness levels, thinking we’d have time for a little chat with our social worker before going in, the next our social worker was there and being called straight through.  Then after about 5 minutes they then called us through.  I’m not sure there is anything I can really use to compare the experience of walking into a room full of people sitting around a table who have all read ostensibly EVERYTHING there is to know about you.  It’s sort of like an incredibly intense and personal job-interview situation, I guess.

We went to take our seats at the big rectangular table, next to our social worker and she cut through the massive tension by attempting to pour us both a glass of water and knocking it everywhere, for which I was very grateful!  Someone produced a tea towel (which in hindsight, I was like “Wut?!  Where did that come from?!”) and then the introductions got under way.  There were 10 people and then the two of us.  They all introduced themselves with names and job titles and I now can’t remember any of them.  There was basically a head of panel, an actual foster carer, a social worker from the fostering team, our social worker, a scribe, an independent body overseeing it all, and then others.  I remember smilling and nodding at each one and trying to commit their names and reasons for being there to my memory and failing completely.

The person chairing the panel welcomed us and started out by saying that they “appreciated our application to foster” which right off the bat made me think:

“It’s a no”

because really, isn’t that how every gentle rejection begins?  “I’m flattered you want to marry me but…NO” “We’re grateful for your job application but…NO”

Anyway, the first question they had for us was basically “Why NOW?” which I attempted to answer with a “carpe diem” kind of explanation, and then worried they’d think we were so busy ‘seizing the day’ that we wouldn’t have considered the practicalities, so tagged some actual logical reasons on to the end.

The second question was more complex but really boiled down to “Do you really think you can do it?!” so I waffled extensively about how the boys are moving on and I feel I have the time/space/energy to give mentally/emotionally/physically to another child, and then Chris kind of saved me from eternal waffling by chipping in with some practical strategies and ways we would cope with the demands it would present.

Towards the end of the questioning Chris said that the panel head said something that made him think “we’re in”, like a slip of words, meaning to say “IF you were approved you’d need to make use of the support offered” but saying “WHEN you are approved” instead…but I was so busy being HELLA NERVOUS that I missed that, so was genuinely relieved/surprised/delighted when she looked around the table and said “I think we will be recommending your approval?” and was met with a sea of nodding smiling faces.

It was explained that technically panel do not approve, they recommend, and that it takes about 10 working days for The Master of the Universe (or, you know, an independent head body person) to actually, as Chris put it “rubber stamp” our approval.  After that we were congratulated and wished luck and sent on our way.  The whole thing took maybe 15 minutes maximum, but felt much longer!  We had a hug and a little debrief from our lovely social worker, who I will be so sad to say goodbye to, as she doesn’t get to follow us on the rest of our journey- we will be passed to a supervising social worker now.  Then we celebrated in the entirely ridiculous manner of going food shopping in big Asda and putting the christmas decorations back in the loft…lame, I know.

So, just 7 months after making our initial enquiry into fostering, we were approved, and now we are waiting for a visit from our new social worker, and for our ‘equipment’ (pram, cot, baby monitor etc) to be in place and then we will be added to the vacancies list, which will mean at any time from that point we could receive a call about a potential ‘placement’, i.e. a foster baby or child!

We have been approved for one child of any gender or ethnicity between the ages of 0 and 2, so it’s kind of crazy knowing we could suddenly have a tiny newborn, or a toddler, or any age in-between living with us within the next few weeks…but it’s also pretty damn exciting.  I finally feel like I can really clear out the spare room and that I won’t be ‘jinxing’ anything, or getting ahead of myself by doing it, because for sure, there is going to be a tiny person using that space very soon.  Eeeeek! 🙂

The Trial

Back in August when I wrote “One Year On”– a blog post marking the 12 months since my first hospital admission for (what we now know to be) CIDP, I mentioned a clinical trial I was possibly going on.

Back then, it was just a pie-in-the-sky “this maybe might happen at some point” kinda thing, but last week I finally got The Call from a research nurse, to let me know that they were now recruiting patients and to ask if I was still interested (the answer to that being a definite YES!)

See, the trial is to see if CIDP can be successfully treated with subcutaneous immunoglobulins (SCIG) at home, rather than intravenous immunoglobulins (IVIG) at hospital.  The idea of being able to administer my own medication in my own home sounds so good that ever since my consultant mentioned the possibility last summer I’ve been dreaming of the day when it could be a reality.  So when the research nurse asked if she could send me some more information about the trial itself, I was delighted.

Unfortunately, that was where my elation ended.  As when the information itself arrived, my happy-feelings quickly went away.  The trial itself is lengthly, in fact it’s really of an undetermined length as there are three phases and the first two are entirely dependant on you as a participant, or rather- your body/condition.  The final stage being a set 3 months.

There’s a lot to it (obviously, as it’s a clinical trial!) but I’ll try breaking it down very simply.  Basically first up, they need to be sure you are actually reliant on immunoglobulins as a form of treatment, so they take you off them (eeeeeeeeeeeeeeek!) and then when it turns out that you really do need it, they re-stabilise you, but rather than with your usual product/dose/infusion, it’s with the SCIG, and then, when you’re stabilised (however long that takes) they assign you to one of three groups, either low dose SCIG, high dose SCIG, or a placebo (eeeeeeeeeeeek!) and then after three months it’s game over and you’re back on your usual IVIG in the hospital.

Now some of that, I already knew.  My consultant had pre-warned me that they would need to be certain the participants actually NEEDED the immunoglobulins, so I figured there’d be a period where I’d be required to go without, and I also knew that I’d need to have some of my investigations repeated, like the electric shock torture, I mean, err…Nerve Conduction Testing…so some of it wasn’t a surprise, but a lot of it was, and not in a good way.  There was a lot to read through, and it laid it all out bare how many extra hospital visits it would require and how much upheaval and disruption it would potentially cause, and by the end of my first read through I was already thinking:

NOPE.

I feel so guilty in a way as I think it’s a fantastic study, and the results could have amazing implications for the future treatment of others with my condition, but I just can’t justify turning my life (and the lives of Chris, and the boys, and potentially a foster child!) upside down to take part in something with so much uncertainty when it’s going to have such a big impact.

So I went to see my neuro specialist nurse yesterday as I had a routine review appointment with her anyway, and the research nurse was with her, and I was just very honest with both of them about how despite my initial enthusiasm, I’d changed my mind, and they were both very understanding and generally lovely and made sure I knew that I was under absolutely no pressure whatsoever to take part.

My actual review went well- my scores are higher than they were in the summer, which is apparently unusual as generally us CIDP sufferers are worse in the winter (I do find I have more nerve pain and tremors, at the minute but I’m nowhere near as lethargic as I was in the hot weather, so…?) and then the topic turned to my treatment and what to do moving forward.  I still get a dip at the end of each month, it’s not as bad as it used to be, but there are still those last few days before my next infusion where I’m a bit shaky, a bit weak, generally lethargic, and well…a bit naff all round.  So the question was- can my dose be increased?  The answer being yeeees, but a tentative yes, because I’m already on 80g of privigen, so the next logical step would be 90g or even 100g, but those kinds of doses can’t be given over one day, so I’d be back to where I was at the start of last year when I had to spend two consecutive days each month at the hospital (not ideal, obviously).

In the end, my lovely specialist nurse called in my equally lovely consultant who’s answer was: “SCIG”

Which, I’ve got to say, confused us all, as the three of us all assumed he was talking about the trial.

“No, I mean, just SCIG”  he said.

Turns out, aside from the trial, a small number of patients are being started on SCIG at home already, as the small amount of research there is (mainly from other countries at this stage) is showing- it works, and is better for everyone involved.  So he wanted to know- did I still fancy it?  Without all the hoops of the trial to jump through, just- get trained up, and get going with it, doing it myself at home?  Errr….YES!!!!!!!!!!!!!!!

So that’s what’s going to happen.  I don’t know when yet, but I do know it will likely be quite soon, which is super exciting.

I know I’ve said this before, both here on the blog, and over on facebook, and probably on twitter, and definitely in real life too, but I’ve got to say it again: I really am SO lucky, to have been diagnosed so quickly, to have found a treatment that works so well for me, and to have such a fantastic team of professionals taking care of me.  It’s days like yesterday that really hammer that home for me- I go into an appointment feeling anxious, and come out feeling reassured and really positive about the future.

 

JanuaryIVIG

(That’s me having my infusion 2 weeks ago, it was about 3 hours late due to the ward being busy- something that won’t be a problem when I’m doing it myself- yay!!)

The Stand

I have finished the first book of my Great Re-Read of 2015

thestand

Usually, when I read this book (I say usually, because I have read it a fair few times now) I get ill or the people around me do, and I become royally freaked out (understandable I think, given the subject matter!) but this time it hasn’t happened, for which I am very thankful as my body seems to be struggling enough at the minute without adding any further burdens to it’s already strenuous load of having to exist and perform the daily tasks of living.

Anywho, before this turns into a health-related grumble- back to the book.

Stephen King’s The Stand is undoubtedly one of my favourite books, which is sort of weird, as it’s one of the very few books of his I’ve actually read all the way through.  I say sort of weird, because usually, when an author has written as many books as he has, people tend to go the whole hog, and list them as a favourite author, maybe cherry-picking a couple of their books as examples of their greatness, but for me, as talented as the dude clearly is, it is that specific book that I adore, and that manages to blow my mind every single time I read it.

My first experience with The Stand was watching the TV adaptation with my Mum in the late 90’s.  It terrified us both, her I assume because parts of it were genuinely spooky, and me because I was way too young to be watching it, in all honesty but I probably swore blind it didn’t bother me.  Even now I can close my eyes and conjure a particular scene- I think where Stuart is trying to escape the plague centre, and the bodies by the lift door, so obviously it hasn’t in any way mentally scarred me…*ahem*

Then as a teenager I was in a Waterstones and saw the paperback “uncut” version (apparently big chunks were edited out of the original that King later replaced) and bought it on a 3 for 2 deal, read it, had my mind blown, and have continued to read it fairly regularly since, although I think it’s been about 2.5, maybe even 3 years since my last read.

I have now read it so many times that I feel like I actually know the main characters personally, and reading the book again is like going to visit old friends, with that sense of familiarity and homecoming, a sort of catching-up “hey, how’ve you guys been since my last visit?” but my story has changed each time whereas their’s remains eternally the same.  That said, despite knowing exactly who everyone is and what happens and when, I still get All The Feels, each and every time.  It’s not even like I forget parts of the story and am freshly surprised, I know what’s coming but it affects me all the same- that’s some pretty impressive shit, if you ask me.  How well written does something have to be, that it can still cause laughter, gasps of horror, and real actual tears on it’s (estimated) 20th read-through?  Very, I reckon.

If there is anyone reading this who doesn’t know what the book is about, first up: WUT?!  Secondly- it’s about the majority of the population of the world being wiped out by a (man-made) virus, and about what happens after…and ultimately it’s a take on the oldest story there is- good vs evil.  But it’s also about so much more than that- it’s about people, and how they cope in times of crisis (or not) and their capacity for change, and about love and friendship and about western society, and politics, and war.  It covers so much, that it’s really hardly a wonder it’s so epically fucking long (my paperback edition has 1421 pages).

I usually end up staying up late, trying to finish pages/chapters/sections/the whole goddam thing, devouring it over 2-3 days, ignoring all other responsibilities, but this time I made a concerted effort to slow down.  I still read some most days/nights in the last week (and it has still taken me only a week to finish it) but I kept telling myself not to rush, that I already knew the conclusion, so just to enjoy the ride.  It meant I noticed things I haven’t before, things I was surprised by, such as the fact that there are two separate secondary characters in the book called “Rudy”.  If someone had quizzed me, I doubt I’d have known that fact off the top of my head and yet, there it is.  One of my most favourite books of all time, and it contains two characters who share their name with my youngest child, and yet consciously at least that never entered my head when naming him.

One of the Rudys is the guy who taught the “deaf mute” Nick Andros to read and write as a kid, and reading it again this year really cemented what I have always known to be true- that Nick is my absolute favourite character in the book.  I told this to Chris (who has never read it, but heard me talk about it so much he probably feels like he has) and he told me that Nick had also been his Mum, Joy’s favourite character too, and that made me smile.  I don’t know if she and I ever discussed the book, when you look back over years it’s hard to pinpoint specific conversations, or exchanges of information, it’s more a memory of talking with a person and feeling happy and comfortable in their presence, but it makes me happy to know we had that in common.  Nick fucking rocks as a person.  And so did Joy, actually.

That brings me on to another thing I noticed, or felt more acutely reading the book this time- the spiritual or religious element.  I appreciated Glen’s observations a lot more this time, and I think for the first time grasped the enormity of the outcome for him.  An atheist sociologist, paying the ultimate price in a war between good and evil- not because he believes in God, or the devil, but because he believes in a people and is willing to defend their right to live peacefully, even if it means sacrificing his own life in the process.  That’s some heavy shit right there.

I also sympathised more with Larry than I think I have in previous read-throughs, and even, to a certain extent, Lloyd.  I guess as I’m getting older I can appreciate more the subtleties of human beings and how many shades of grey there are in-between good and bad.

All in all, it felt really good to read it again after such a long gap since the last time, and like all good books that stick with you in some way, when you read it, you don’t only get the memories of the book itself, but your own memories from previous times you’ve read it.  I could see my past self trying to read it one-handed whilst breastfeeding (virtually impossible due to the thickness of the book!) or hunched over in the lamplight in the bedroom of our old flat, or sprawled out on the carpet, beside the floor-length window in my room in the children’s home.  And yet no matter how many times I go on this adventure with this book, it’s never exactly the same as the time before because I’m slightly different myself, so my focus shifts or different things spring out at me in different ways- like me just noticing the Rudy thing this time, for example.

So, my plan for ‘The Great Re Read’, had been to stick to set headings, such as:

What the book is about

Why I love it so much

How long it’s been since I last read it and

What it was like reading it again this time

but clearly I have totally failed to do that here, and have just rambled at large, although I think I’ve kind of covered all those things…sort of…so I guess that’ll have to do, and I’ll try to be more structured with the next book, which I’ve decided is going to be…

 

the gargoyle

Yep, so far I’m sticking to list order!  Before that I have a couple of (new) books I want to read, so I’m going to wait until February to revisit this one- see you then!

 

 

 

 

 

A Child-Free Monday

Today was the first day I’ve had where both boys were in school/nursery all day, and Chris was busy with uni work.

So of all the vast and dizzying possibilities of things I could do with my free time I decided it would be best to ATTEMPT TO ORGANISE MY ENTIRE LIFE. I made appointments I needed to make, sent e-mails I needed to send, made telephone call enquiries, and posted parcels and then I went to the bank and had a customer review to sort out my finances, and then finally, feeling overwhelmed by how incredibly sensible and grown-up I was being, I went directly to my favourite piercing place and made an impulse purchase in the form of having another piece of metal put through my body…because it is important to have BALANCE in all things 😉

Spot the new piercing!

20150112_140216

Rebecca’s Great Re-Read of 2015

At the end of last year (oooh, first time I’ve said anything like that so far!) I alluded to the fact I was going to do something a bit different with my reading challenges this year.

Last year I commenced Project Book Jar, and I’m still going to keep that going, but more as a way to help myself out if I’m feeling stuck on what to read, rather than having this massively overwhelming urge to reduce my TBR pile.

Instead, I have decided to indulge myself and re-read a handful of my absolute favourites.

I was pretty shocked when I was listing everything I read in 2014 to realise the only thing I actually re-read in the last 12 months was the first Harry Potter book, and only then because I’m reading them to the boys at bedtime.  There are so many books I love, and I want the chance to fall in love with them all over again.

So, I have picked 12 books so that I can (in theory) re-read one each month.

They are all favourites of mine, and the majority of them I haven’t read in a really long time (years and years in most cases) so I’m going to try and post updates about my progress to let you know what it was like to revisit them.

So without further ado- here’s the list:

I won’t necessarily be re-visiting them in that exact order, but I am starting with The Stand, so who knows, it might just accidentally work out that way…

thestand

See you in 1421 pages! 😉