Saturday, 25 January 2014

Had a very angry dream last night.

I think I'm starting to get angry. And I think I'd rather get angry than depressed.
Though saying that, I have a feeling the anger is covering the true emotions in me. That's fine. I'd rather keep it that way. I don't like more melancholy emotions as they're less productive.

I've had a lot of people offering me their ear and telling me to talk to them if I need to, which I appreciate (really, I do), but right now I'd rather avoid doing that as I don't want to unseal what I can really feel. I'm actually doing fairly well without it being unsealed. I know it doesn't sound like I am, but again, I'm angry rather than depressed and anger, to me, is a better emotion to feel.

I could seek counselling, but right now, I actually feel like I'm channelling my old larp character Sadira and I'd rather keep the armour donned than reveal the weaker flesh below. I'm not in a mood to show a weaker state. I don't know what'll happen to my mental state if I do.
For those who don't know who Sadira is, as a Live Action Role Player, she was my previous character and, in my books, she was awesome. She went through a ridiculous amount of hell, lost family, lost friends, tried to be a big part of helping pull together a country that was lost. When she lost a large chunk of her family, she donned armour, got a 'symbolic scar on her face' (rigid collodion is terrific for that!) whilst helping the people of her land and refused healing to show those around her what she'd gone through.
She was quite dark to play but also a lot of fun. When she died, it really hit me not playing her any more as she was my escape from some scary stuff I was facing in the real world. Then I got hit by more stuff: lost my job, was diagnosed with kidney scarring....etc.

And now I can feel that little Sadira spark growing back. I've another character at larp now, who's a little more fun loving, more colourful and a little more ridiculous. She's a lot of fun to play, but I must confess there are days I really really miss Sadira. And mainly for the fact that I felt stronger due to the physical armour she wore. Not to say I feel weak now. But she helped.

In reality, changing my appearance to something more confident boosting these days is my armour. Having my hair cut last year helped. I'm booked for a trim this morning. Hopefully that'll perk my mood up a bit.

But right now I'm angry. And I'm trying to keep the anger on top of that which is hidden, so good ol' Frankie can keep shining through. That's how you know I'm ok. Because I keep still fighting back.

Friday, 24 January 2014

Just gonna poke at that heart string

Post just arrived. Tom's usual Blood donation letter was in the bunch. On it was the tag line 'Do something amazing'.

My first thought was 'He tried to, but his body wouldn't let him*'.

*Reminder: 1 out of 6 antibodies that wasn't compatible

Thursday, 23 January 2014

And finally.....

Turns out Tom's not a match.

Almost feels totally not worth waiting so long for. But then again, it's not like we're back to square least we're not in the dark any more.

On 8 Feb, I'll be attending a kidney transplant seminar with family. Hopefully, it'll answer some more questions and be helpful to our mission. After that, we'll work out what we'll be doing next.
I feel there's more I need to voice....but I don't want to. Not yet. It's there, poking the back of my mind, but I'm refusing to let it forward. Mainly because I feel I'll just get angry rather than productive.

In the meantime, I'm concentrating on working on more acting/modelling jobs (had a pretty busy last couple of weeks!), and baking and just generally keeping busy. And hopefully that'll be enough to keep this nagging 'payattentiontome' in the back of my head.

Not yet...stay out the way a little longer.

Saturday, 18 January 2014 it me you're looking for

It's now Saturday...about well over a week since we were told 'I'll call you in two days time'. confirming if Tom's a match.

Getting a little bored of this now. I like to think I've patience in regard to health stuff as I understand there are priorities out there, but if someone says they're going to call on a specific date I'd rather a 'sorry, we don't have a details yet, it might be another month til we get the news' rather than just sitting here, expecting every call to be it.

Plus, if Tom's not a match, fine! Not a problem! But can you let us know so we can get on with finding another possible match please?

So...will be trying to call again and trying other contacts who might not have the details but might be able to give her a nudge and see what happens.

Monday, 13 January 2014

For whom the bell tolls

Ok a bit of an ominous post title, but it makes me feel like I'm looking out at a rumbling storm cloud before the rain, whilst I'm in a warm, cosy house, all toasty (impending situation, but I'm content, so it's ok).
This honestly makes more sense in my head than it probably does to those reading it, so I'm keeping it.

So. I left you with the information that we were waiting to see if Tom's a donor, informed we'd hear back Thursday, in time to see my doctor on Friday.
Thursday came and went. Friday came and went. It's now Monday and we're still none the wiser about compatibility.

I'm disgruntled, but have shrugged it off and appear simply re-entered my automatic 'waiting waiting waiting' phase. We're now under the assumption something came up to delay any new news reaching us: consultants weren't sure/more tests being done/another element to make the sitcom style of my life more interesting. Take your pick.

On speaking with my doctor, we mentioned that we'd ideally like an idea of when to expect the final operation itself. Could it be this Summer? Could it be end of year? Could it even be next year?? He looked us both in the eye and said 'let's do that now. When would you prefer.'

Tom and I hesitated, glanced at each other and I responded, 'I'm sorry, what? Can we do that? Even without a donor'
Doctor: 'You want a date, so let's arrange one now'.
Us: 'Umm...ok...well, July would be preferable.'
On the doctor's brow furrowing slightly at the idea that I didn't want it sooner, we highlighted that we'd been informed that all the following compatibility tests would take up approximately 3 months, so we were hoping to get involved in our next theatre's show to distract us whilst the tests took place.

So we're set, theoretically, on July.

Encouraging us to come up with a date of our own was an interesting move on his part as we were clearly looking for some form of stability in our lives, to make the whole ordeal more tolerable. The process and the waiting with nothing in stone is the whole reason I've developed minor control and slight OCD tendencies: if I can't control what's happening with my health, I can control other elements of my world.
Speaking of which, this has actually taken on an interesting form of its own.

A while back, I started fantasising about owning a tiny, one bedroom flat which was minimalist and completely white. It took me a while to realise, I didn't want to move out of where we were currently living, but just have a place which was completely under my control and basically free of all forms of clutter (we can't really do that now as Tom and I are collectors and we love books/comics/figures, so they're everywhere. The best I can do is tidy).
Since getting my hair cut, this feeling dissipated and I relaxed.
I woke up this morning and the image was back again and this time, everything was white. Including the furniture, furnishings and decor. It doesn't bother me, just gives me a craving that can't really be satisfied. It really just makes me very tidy.
It's just occurred to me that I own The Sims computer game. I may make this image a reality and see what comes of it.

Anyway, giving us a date to work towards gave us a target. Even if it doesn't work out, psychologically it eases the pressure of the wait a little bit.

So...we continue to wait.

Wednesday, 8 January 2014

And a Happy 2014 to you

To those who read this, I hope you had a splendid festive holiday and New Year. I certainly did. I actually couldn't have asked for a better way to see in 2014.
I had hoped to be celebrating any possible kidney news by this time, but alas this was not to be.
As previously mentioned, the usual wait for the kidney compatibility tests are 3 - 4 weeks. I had the misfortune of hitting the festive season, so had to wait that little bit longer as people were now on leave.

Yesterday, 7 January and my 30th, two hours before Tom and I head out for a Chinese meal at the same restaurant we've been going to for each birthday for several years now with my parents, we finally got the call.
Out of the 3 donors, my mum is. rather surprisingly, out due to having a different blood type and age maturing her kidney function so they're sufficient for a mature woman but not enough to support someone with weakening kidneys. The third person was completely out (which we kind of suspected would be the case).

But Tom...may just about pass. If I understood correctly, he's the same blood and tissue type, but he's got 1 out of 6 antibodies in his system which might impede a successful transplant.
However. They have treatments for these kinds of things so it's possible we might be able to work around it.

Our living donor contact is speaking with a consultant on whether it's worth trying to make this transplant work. We'll get the final news on Thursday.

It's possible I'll be ending the week of my birthday with good news. How do I feel? No different to when I had to wait before. I'm still waiting.
Truth be told, I'm not actually raising my hopes for anything until I'm on the operating table as there's a good chance anything can happen throughout the process and I can't risk setting myself up for potential major disappointment.
So...I don't worry about it...for now.