Happy One Month Anniversary!

HAPPY ANNIVERSARY!

Hard to believe that this all started one month ago today.  In some ways it's been the longest month of my life.  In other ways I feel like it's been going on for a few hours.  I cannot even begin to comprehend how my family are still functioning.

The reality at this stage is that we are all exhausted.  BUT, we are one month in and I am still here.  I am not having seizures.  I am not functioning in a completely normal way, however I am functioning.  It remains a rollercoaster, and it changes every day, but I think it is right and proper to feel a sense of achievement and satisfaction that we are one month in. 

Last night was a rough one.  However, as I am learning to accept, the meltdowns ultimately lead to the biggest advances.  I had been grand.  It had been a good day.  I'd enjoyed quality time with Fin and was tired but content.  I was in bed early.  Not sleeping, updating blog etc.  Feeling ok.  Still frustrated at the lack of mental sharpness and slightly drunk feeling, but confident it was continuing to improve. 

Then the Big Man came in to bed.  Probably near 10pm.  And I melted down.  Completely.  An emotional mess.  A full on, pity fest.  Nobody understands, you hate me, I can't put everyone through this anymore, I can't live like this....... etc etc etc.  Messy.  Unfair.  Selfish.  Completely uncontrollable.  He did what he's done from the start.  He let me get it out.  He let me cry.  He didn't judge.  He listened to words that must've ripped him to his very core, but he allowed me to get them out.

Do you know what happened after that??........  We fell asleep.  Sweet, restorative sleep.  A sleep that exhausted people need, but that can often only come with a complete release of emotion.

I'm not going to say I slept soundly all night.  I know I woke around 2/3am, but I didn't wake feeling anxious or panicked.  I woke as someone who drinks an awful lot of water and is taking heavy doses of steroids!  So I was up briefly, but in a non-eventful kind of way.

Guess when I next woke up?  Exactly 8 minutes before the Big Man's 06.30am alarm was due to go off.  Now that's a result.  A big one.  I actually woke a little excited.....  I've slept.  We've got to one month.  The first surgery is on Wednesday.  I haven't had any more seizures.  We are all over this!!

So yes, today I am celebrating.  Another step along the road to 'normal'.  A new normal maybe, but not necessarily a bad normal.  All I can see today are opportunities.  Positivity.

I have had a slow start this morning.  Through choice.  I am looking forward to various visitors throughout the day, safe in the knowledge that I am not obligated.  I have plans, but I can bow out at any time if it gets too much.  Perfect.

In consultation with the Medical Experts, we are also changing medications today.  I am VERY happy about this.  I accept I've had to take certain medications to keep me safe, but I maintain I am the world's worst drug taker.  At this stage in my life I cannot imagine every drinking alcohol again, never mind ever taking a drug, prescription or otherwise.  Not for me.  I will sicken you all with my healthy lifestyle!  As of today, my steroid intake will reduce and will be focussed on the morning.  So 7am only.  Nothing the rest of the day.  My anti epileptics will be 7am and 7pm.  It still feels a bit counterproductive to me that I am taking two drugs with very different effects at the same time in the morning.  However, I am not a medical expert and I know I need to exercise some trust.  In fairness to them, the experts have been very patient with my 'negotiating' and need to be part of my own 'care team'.  I must be driving them slightly insane at this stage.  We are working through it together, and I think that's a really healthy thing to do.  They know what the drugs do, I know how they make me feel and any resulting symptom changes.  Discussing all this together and everyone taking responsibility can only be a good thing.

So it feels like another big step forward kind of day.  Another small but massive leap along the road. 

ONE MONTH!  One month of pure madness, but still one month.  First surgery on Wednesday.  I'm actually feeling a bit impatient for it now. 

This time two weeks ago I would have struggled to make a cup of tea.  I could have literally 'lost' days in a row.  I couldn't think straight.  I was confused and scared.  Now I am able to function in a relatively normal way.  Despite having cancer and taking heavy medications.  I feel immensely positive, unbelievably lucky, and remain completely overwhelmed by the love and support of family and friends.

Happy Anniversary.  A day to celebrate!