Aiming for home.....

I should get home on Tuesday. Excited about that. I'm going to have to re-learn everything again. All those neural pathways to be restored again..... our new 'normal'. But I did it the last time I went home and I've done it again in RVH so I know I can do it again. Trick is to trust myself, not rush myself, no stress or pressure, and ongoing unquestioning support of family and friends.

Today included sleeping until 10am (completely crediting my 'got to have' priest for that one), a lovely 'sister shower'..... I'm only allowed to wash a bit of my hair but it feels pretty amazing to get that bit cleaned up! My poor sister gets drenched in the process but continues to be selfless and uncomplaining. A couple of new entries into the Ward of Winners (two got discharged which was great to see!) A lovely visit and walk with my clever son - he'd been up to Queens Open Day today..... did I mention he's got offers for every course he applied for and got 3x As in his mocks?? So proud of him. No seizures of any description today - no grand mal, no facial, no absence.... epilepsy sorted at the moment, which is great news! I manage it in the rarest ways (as well as obviously with medication)  but it works for me. Keep the positivity Blasts coming - I look st them every evening and every morning. Plus the emails/ texts/ whatsapp s/ comments - all make me smile and help me immensely. I remain adament about my medications. I take what I need to but nothing else. And I won't take intravenously. Even fluids..... I can drink water...... there is nothing more disconcerting than having brain surgery , followed by intravenous fluids, and then fluid coming out of your nose..... you think it's brain fluid!! This is not s good place for anyone's head to be! I'll drink from a cup thanks. Plus intravenous paracetamol etc causes a taste...... as my epilepsy absence seizures are often preceded by a taste this is also not a good place for me to be....... Demanding?? Me?? Possibly s bit! I lecture the nurses and doctors about over prescribing, I refuse to comply over certain things (don't come near me trying to put a cannula in my arm....... it hurts and I'm not a pin cushion!) I give off about silly things like giving blood (six veins?? I think not) and night time stomach injections (to avoid clots), removal of brain drains. Some doctors and nurses are allowed near me, others I will beat off with a stick. I will hurl insults and not allow them near me. The best I've found are the ones who orientate you - tell you who they are and what they're going to do, but then just do it quickly and efficiently. I'm aware I sound hugely ungrateful. I don't mean to. I'm also aware it must sound ridiculous to have two craniotomies but then flip out over a blood test. I guess it's a control thing too, it's my body, I'll do whatever I need to do to fight this thing, but I'm not being butchered to get a cannula in! I had two removed this evening. Good luck to anyone that wants to put them back in. It might be an anaesthetic job..... though hopefully once I get out of hospitalg veins will improve a bit. They've been poked and prodded for 6 weeks and were never great to begin with. Maybe all the drugs will start to pump them up and I'll end up with ripping muscles and veins popping out all over the place! I'd be happy to just end up back to me. Although I'm not convinced I've changed so much. Still a control freak, still thran as anything, still a mix of positivity and happiness and cheekiness..... bit like all of us I suppose. Still my own personality.  I remain surrounded and grateful to my incredible Support Team. And completely inspired by my Ward of Winners. Each one facing their own issues but each one fighting every day. All helping each other. All rooting for each other. All celebrating each other's victories.  At the moment it looks like I will go home on Tuesday. I'm excited and nervous. It'll be hard to relearn everything all over again, but I know I can do it, no pressure, no stress, I've done it before and I'll do it again. With your help. The thing sI'm most nervous about now  are 

• Getting results of most recent scan. Although I know it'll show a big bit of spongy tumour removed and also some 'angry peas'. Any day of information tends to be scary and hard to absorb. It can just be too much to take in and usually ends in tears
• Getting the tape off wounds and stitches out. That's gotta hurt.....  I'm not looking guessed to it at all. I keep thinking maybe they'll be dissolving stitches but I'm diff that's optimistic. If it's staples a might be the biggest wimp ever seen!
• Just generally learning to be normal again. I know I can do it, but I want off these damned medications. I want back to myself, completely me.
• Any consideration of future surgery - the thought of it makes me feel sick.
• Dealing with anxiety, particularly after awake surgery. I've been regrrred for Neuro counselling.   Which seems like s great idea. I. Any imagine too many cons ghrougb that with no flashbacks. Although it seems my special priest offers the best counselling I could ever bzvd hoped  for, 
• Facing people again - I want to see everyone and thank you for what you've done for me, there are so many I want to sit down in front of you and show you what we've achieved together. But I'm embarrassed by what I've put everyone through. I'm angry that my body was weak and let me down. I'm angry and embarrassed at how many people have been dragged into this. I don't know how I bdgin to repay people. There are a few in particular that I just wouldn't know where to start. 

Rest assured we will sit down together. I will try to thank you, although I know I'll never be able to articulate it in a sensible way.  For now I will sleep. Restorative, healing sleep. I will have a quick look st my favourite positivity blast photos. Just because they make me smile. I'll settle down and think happy, positive thoughts. I'm likely to lie in...... sure it'll be Sunday after all! I'll enjoy another sister shower, get myself respectable and prepare for the next stage of the fight. Which I will win. Thanks to my Support Team. My cage.  I love you guys. Sincerely. ❤❤❤