CLARITY! My most important post to date.......

CLARITY

I’m confident that this is the single, biggest, most important update I will give.  I’m also pretty confident it’s going to take me forever to write it up and may not make complete sense at the end…..  I will do my very, very best to be succinct and I am going to concentrate really, really hard!!  Here goes……..

Today I woke up feeling pretty good.  My sleep has improved greatly since the meds were reduced again.  I was up at my usual 7am ‘med o’clock’ and was showered and dressed by 10am.  A fast start for me these days.  I have a friend who is a beautician and is also training to be a nurse.  We had arranged for her to call this morning to take care of some practicalities (did you know gel nail polish will cancel your surgery…. Infection risk?  Important).  She very kindly called to my home on a Sunday morning, no questions asked.  Interestingly, and in yet another twist of fate that I simply cannot ignore at the moment, she is currently working with patients who have experienced some form of brain injury.  We talked.  About the brain.  About how it works and what bits do different things.  I told her how I sometimes just felt like I’d gone a bit mad.  She was completely and utterly accepting of everything I said.  I started to realise that my journey and the feelings I am experiencing might not be so unusual after all.  We talked about the ‘reset’ of the brain that often needs done after a seizure.  The necessary prescription drugs, the confusion, the having to ‘relearn’ simple tasks.  We talked about cancer.  People expect a clear, simple diagnosis.  They expect a treatment plan.  They expect their story to be the same as someone else’s.  That’s not what happens.  Your diagnosis may be complicated.  It is likely to change as new information comes in and as that new information is assessed by experts.  Your story, whilst it may have some similarities, is highly unlikely to be the same as someone else’s. 

 
My diagnosis remains a somewhat harsh one.  Malignancy.  One probably low grade tumour, invasive, large spread.  One probably higher grade, more aggressive.  Both in the brain.  Both with treatment plans, although very different treatment plans.  Both still doing their own thing, as they have been doing all along…… so both open to changing their minds about how they progress.  Bit like their good owner then, aren’t they??  Let’s clarify this again…….  Cancer in ONE PLACE.  Treatment plans.  CHOICES.  A FAR BETTER OPPORTUNITY THAN MANY PEOPLE GET.  No timescales.  A different life, a fluid life…….  A LIFE.  A slap up the face from life, but one I still feel somewhat privileged to have been given.

My biggest fear has always been being left ‘mentally fully cared for’.  The wee daftie that has no idea what’s going on.  Costing my family a fortune financially and mentally.  With no quality of life, dignity and seen as a sympathy vote for all around.  I have complete clarity around this now…….  Firstly, you can re-learn routine tasks.  It is frustrating and disorientating.  It can be difficult for others to watch and there will be days when you question everything about it.  I came home from hospital unable to tell you what day it was, how to make a cup of tea, often losing time for days on end.  Two weeks later I can lead a fairly normal day, all be it at a slow rate.  That is progress.  Major progress.  Call with me now and I will make you a cup of tea, I will tell you a good story, I might randomly ask you a slightly off the wall question or forget what I was talking about……  No big deal.  It’s taken a month in total, but I have made massive progress.  I also walk every day.  Might only be a mile, but I’ll do it.  I won’t freak out loud noises, though I might politely ask you to keep your voice down or stop flapping your arms around.

The brain can heal.  Even if I am left with gaps, I can re-learn.  I’ve already proven that, and there is medical understanding now of how to promote this type of learning.  I also have my amazing Support Team around me to help me.  And I now know that the trick is just not to rush it.  Even gaps in memory that are more to do with people etc…… (which hasn’t actually really been an issue for me to date), are not frightening to me now.  If I liked you before then I’m sure I’ll like you again once I get to know you again!!  Again, the trick is to not be rushed.  If I forget all this due to surgery, then please remind me!  It will be very reassuring for me.  Another reason I’m glad I’m writing this all down.

Full-time cared for?  Unlikely.  Just time.  Patience.  Reassurance.  Fluid attitude.  I’m not one bit scared of that now.

I know I’ve already talked briefly about physical outcomes of surgeries.  I can categorically confirm that this is not of any concern to me at all.  People overcome physical difficulties every day.  I am physically and mentally strong.  I have support and love all around me.  Priorities.  If there are physical consequences then we will deal with them if we need to.  Again, not one bit worried.

A big day of revelations, I think you’ll agree?!  Having had these massive revelations I felt the need to get some fresh air.  The Big Man and I went to a beautiful part of the world – Binevenagh.  Remember the statue that was stolen?  The story was all over the news.  If you haven’t been there then go.  http://www.bbc.co.uk/news/uk-northern-ireland-31583028 

The weather was awful, although I have found an appreciation of all types of weather that is nothing short of liberating!  Weather reminds you that you are alive.  We walked.  Not far, but we were soaked. Lovely!  We sat in the car and looked out across the beautiful scenery.  We ate the best picnic I have ever tasted in my life.  We talked about everything that has happened and how so many people just do not realise how important these small things in life are, until they get the slap up the face we have been so beautifully delivered.  We talked about the people who get the slap and ignore it.  We watched other people arrive and do much the same as us.  I wondered what their stories were.  Which ones were experiencing similar things to us?

We laughed.  We cried a tiny bit, but not too much because I don’t think either of us were actually sad.  Quite the opposite.  It’s not being dismissive.  I know things are serious, but I am not scared.  Not even slightly.  I’m impatient.  Wednesday surgery cannot come quick enough now.  Let’s get this done and move onto the next stage of the journey.

Now we are home and I fancy a nice bath.  I’m going to do what I would usually have done on a Sunday.  A nice bath, music on, skincare……  my day to be a girl.  Don’t worry, I’m not going to lock the door.  The Big Man will listen for any mad splashes!  Bearing in mind, and I know I keep saying it, but I only had one grand mal seizure…… a month ago……  yes, there’s been some weirdness since, but actually nothing life threatening.  I’m going to put on some Foy Vance perhaps…..  a lavender bath bomb…….  And I’m going to relax.  Then I am going to put on a nice pair of pyjamas from the amazing and ever growing range of beautiful pyjamas that I receive on a daily basis! (Thanks for these by the way!) I am going to rest on my bed, perhaps even read the papers.  I am going to chat with Fin and hear about his day at work.  Then I am going to try and get a full night’s sleep.

Tomorrow I am going to take some time alone.  There are some things I need to do.  I also need to pack for admission to hospital on Tuesday.  On Tuesday my gorgeous sister is going to take me to hospital where (assuming I’m not bumped for an actual emergency) I will be admitted for brain surgery number one.  On Wednesday the surgery will be carried out.  On Thursday we will see what’s next.  Calm, sensible, relaxed, ready………..

Clarity.