How Julia got her groove back

The last few days have been filled with so much love, hope and happy.  Where to start?

Last Wednesdays news changed everything.  It’s not for a minute that I am in any denial that this cancer will take my life.  But the minute that the goal posts were moved, that the response to treatment was positive, that I went from a possible lifespan of just months to not knowing how long we can give this beautiful life a shake, I became a changed woman.   The focus is definitely on life now, not death, and what a wonderful feeling it is.

Even the hook up to the poison pump the next day felt different…better…with purpose.  Instead of torture I didn’t even know was working, it was the key to keeping me alive.  Instead of being chained to a chair with a needle in my chest for 4 hours, it was four lovely hours having chats and laughs with the nurses, and my dear friend who sits through these hours with me and keeps my spirits up.  As we were leaving, a lady in the next chair who had been on her own through her whole treatment commented how lucky I was to have someone sit with me the whole time like that.  And she was right, I am lucky.

Chemo has hit me a little harder this cycle.  Last time i seemed to get away with nearly the whole thing with little more than the uber tiredness that goes with every cycle.  This time, a little more numbness and tingling in the extremeties, and nausea from hell.  We went to our usual Thursday night dinner out at the RSL with friends just a few hours after I was unhooked, and still hopped up on steroids.  Not long after we arrived, a big kiss and cuddle arrived from the side – my gorgeous friend Kylie over from Perth to surprise me!  This girl hates a flight with a passion, but drags herself onto one for hours to come and see me.  See, lucky.

Kylie came over the next day, but I was too sick to go out for lunch. Instead she prepared lunch for me and I ate it from under my blanket on the couch, and we caught up.  Friends that you don’t have to put on airs or graces for – lucky.

I booked in last week to go to a self-publishing masterclass.  My blog book has already been written, and production is underway, but if I was going to be given more precious time (at this point, I didn’t know), then I was far from ruling out giving another book a crack…I have so many crazy ideas, but I couldn’t entertain them until I knew I might be able to actually do them if you know what i mean…and I was very interested in the process that goes into producing a book.  It was a fascinating and informative day, and let’s just say the brain is in overdrive.

However, i didn’t know that my booking in for this was sending my camp into a panicked frenzy.  For six weeks  or so, my husband and Kylie had been cooking up a bit of a surprise for me (just a BIT!)  And the surprise was for the night after the masterclass.

I got home, exhausted, gave myself a bit of a shake and we headed out  for our scheduled dinner with Kylie at the hotel she is staying at.  As we walked in for our booking for 7, the staff kept on going on about these tables for 25.  I’m like, no, we are only 7, and they walked us to this massive table, where we awkwardly tucked ourselves into a corner.  I am slow as a wet week, and not for one minute was I jerrying that anything was afoot. Finally Kylie said she was going to ask the manager to move us to a smaller table – cue my surprise as she went and told everyone to come in.  I looked up and said to Gaz “Gaz, isn’t that Andy Bugg”, and THEN the penny dropped!  I got up and ran over, and they all filed in….some of the nearest and dearest members of my “Down syndrome family”, including friends that had driven down from Canberra for a whistlestop stay, lovely friends who I had not seen for years.  Exhausted, yes, but all of a sudden this girl had a second wind.  Lucky, and loved.  Here are some photos of the night:

There is no greater gift that being loved.  To know that all that work went into surprising me.  Sorry for all the stress guys, for worrying I was burning the candle at both ends, and would be too tired to turn up for my own party 🙂  I had the best night ever, love you all so much.

Here is a picture I had taken yesterday morning, on the way to the masterclass, as I could see it, that I was back, the essence of me, and I wanted you to all see it too.

The first thing I need to learn is my limitations I think.  Still getting used to those.  I want to pack so much into these days, and I can also feel myself about to hit a wall.  The last week of TAFE this week, and so much work to do.  I have decided not to continue with TAFE for the second half of the year….I have a project with this book that I am really enjoying and revelling in, and I want to give it all the time it deserves…it is after all the realisation of a massive dream for me.  I also want to concentrate on having the time to put into healthy eating, and exercise, and trying to get this magnificent life to go on as long as possible.  I’ve just got to get through this uber busy week, and then it’s home and hearth and healthy meals, and snuggles with my people, and a good bit of learning to slow the hell down!

That’s it from me for today.  Content, loved, lucky.