Tuesday, 5 August 2014

Am I finally seeing the end of this long tunnel?

I began this entry on the day I received this news, just to record the full impact of my emotions. But truth is I'm posting it when I've seen my specialist, everything's confirmed and the ball is rolling. Given the number of road blocks we've encountered so far....I didn't want to tempt fate by posting this entry, then being informed we were back to square one.

This news came when we'd basically given up hope in finding a live donor, believing the antibodies to be a perpetual road block. Paired pooling was us going 'yeah....it's not going to happen is it...' then diving head first into an option which could have us waiting for up to 2 whole years before being considered for alternatives if nothing came to fruition.
This last donor test was a 'what the hell...let's give it a go and see what happens before we give up'. Y'know...just in case.

Therefore, it was an epic shock to the system to call the consultant on 30th July and be informed that this person was:

  • Blood type O
  • Cross match a success
  • Tissue type 3 out of 6
  • No antibody issues

'I'm sorry...what...I...could you repeat that?'
'No. Antibody. Issues.'

This person ticks all the boxes and can donate to me. A match


Um...words failed me. That made the phone conversation particularly difficult as I had to keep squeaking to let her know I was still there whilst she continued to speak...then wait til we said goodbye before I could hang up then sit and stare at the wall...whilst my brain had a moment.
Only for a few minutes though as I had a counselling session literally half an hour later. I walked to the hospital in such a daze I'm actually surprised I didn't get run over by a car. I arrived just in time...then the month long overflowing dam just opened. I get the impression she may have struggled to keep up with me for the first 10 minutes.
After counselling, I went home, had a sandwich (not trusting myself with the stove) and just...stopped. I felt like I was rebooting. I felt numb. A month's worth of fighting depression, carrying heavy armour, trying to protect myself and others from a typhoon of crazy which I anticipated to carry for more months....only to start August with amazing news.
I can't express just how stunned I was...how stunned I AM. Seriously. This was the one test I was anticipating a negative result, anticipating it so I wouldn't fall ill as my body reacted against what my brain was fighting.

The weirdest part? At the beginning of the year I think, we were talking to the doctor about setting a theoretical date for an operation, if, say in the preceding months I did get a donor. Just to give us something to aim for. Just to set our minds on a target. Something to work towards. It's something we use to help us move forward. If we didn't have a donor by then, we'd go for paired pooling.
August was the date we gave. We're here now, and ok so it's not an operation, but it's a hella step closer!

I feel the same exhilaration I felt when Tom, after 7 months of unemployment, told me he'd got a job. Only bigger. I'm actually scared about feeling excited in case something stomps on this.
I genuinely stood on the train on the way to counselling and actually pinched myself to see if I was having a vivid dream. It's happened before.
So far...so good.

Next Step

Now we need to arrange the same physical exam Tom went through, for the donor to confirm all's well and good for the surgery itself. We'll then get the results, talk to my specialist in September and potentially even set a date for the operation (holy crap, right??)
If all goes well, I COULD (emphasis on the 'could') have an operation within the year.
There's a 'could' there because it's possible something might come up during the physical (finger's crossed for the donor, not as much for myself, this doesn't in fact happen!!), and 'could' because it's possible people who are more urgent will push my operation further and further along.

Honestly, if it IS delayed.....I really won't care. Given the fact that I'll have something so many other people out there are lacking....a donor.

So...how's the patient feeling?

Tired. Dazed. And apart from a headache which started on Thursday and seems to have lodged itself into the base of my skull and refuses to leave, I have a sense of clarity now I haven't had in I don't know how many months.
Throughout the whole of July and a touch in June....and in swathes throughout the year....I've been covered by a blanket of depression. One so heavy, I couldn't see through it and felt painfully...overwhelming. In July, things got a bit much and, to stop myself hitting breaking point, I thrust the armour back on. And although it was heavy, it stopped me from feeling the pain I knew I had inside. I could feel the emotions worming their way around my system, trying to break out...but I refused to allow it exit, mainly because I knew if I did, it risked hurting other people. Mainly because they'd see how hurt I was. So I pushed it down and away. That's not to say, when I had positive moments and moments of laughter, they weren't genuine and I didn't enjoy them....but there was always that heaviness...just there.

For the last month of so, I've been desperately leaning against a bulging cupboard door, which threatened to spill open and cover me in all the emotional and mental shit I've been packing away.
After the news and counselling, I felt so numb, dazed and the heaviest fishbowling I've encountered in a while, the next day I awake to a headache which symbolised all the stuff I'd packed away into that cupboard finally exploding and breaking through. My face hurt, my eyes hurt, my neck hurt. I felt pretty awful.

BUT.....I felt like the heavy blanket of denial and general emotional hell was....finally lifted. And I could breathe again. I went out to a casting on Thursday and for the first time I realised I was noticing sights, sounds, smells and so on clearer than I had done in a while. I was actually aware of the world around me. I'd honestly been so deep in my own mind, I drawn into myself so much, my senses had been dulled. And I hadn't realised this until the veil lifted. I can now think clearer than I have done in too....damned....long. I almost feel like myself again.
One thing I will say is light's now actually seem much brighter. In fact, on Friday, I found myself wearing sun glasses for the first time in how many years because just the reflection of the light on the clouds got a bit much.

The only problem with this is, if something does come up to interfere with the good news and a possible operation, there's a chance I could fall back again. There's a chance that if there's a rejection, I could be hit by a huge dose of recipient guilt. There's a whole load of possibilities loaded up in the future, a whole bucket of shit waiting to fall on me.....

....but for now...I'm going to ignore the 'what if's'. I'm going to ignore the possible sword of damocles hanging over the whole situation. I'm just going to enjoy the good feeling and sense of clarity which comes with this sense of peace. Whilst it lasts :)

1 comment:

  1. Me conmueve la forma en que expresas tus vivencias.
    Todo irá bien. ¡¡Te lo aseguro!!
    En algún misterioso lugar tu abuela Alejandrina está haciendo fuerza para que así ocurra.
    Ella te amaba y se preocupaba mucho por tu salud.
    Te quiero mucho mi niña. No importa la distancia. Eres absolutamente bella.