Sunday 20 March 2016

12 Months, 4 Seasons, 3 Losses, 1 Transplant and 1,000 Reasons to Smile...


12 Months, 4 Seasons, 3 Losses, 1 Transplant and 1,000 Reasons to Smile




Well hello old friends. It has been over a year since I posted on this blog. This was generally due to IT problems as well as medical intervention.
So where do I start? It's been a hell of a year. I've had ups and downs, turnarounds and complete stops.
Let's start at the beginning.....
The last time I posted I was waiting to be ferried to London for what I thought was a last shot at trying to beat this complex and confusing disease.
It was a time of hope, fear and acceptance.
I left my gorgeous family not knowing if I'd see them again, to be honest I almost didn't. The treatment was gruelling and I was surprised by the impacts both physically and mentally. After months of recuperation I started to feel more human.
By this time both of my eyes were suffering with severe cataracts so I found myself, once again, unable to drive and frustrated that I couldn't see.
Just prior to the transplant I was medically retired. It was one week before the transplant and allowed me to enter the process with a clear mind.
It was also a time of changes around my home so I had mini projects to keep me occupied. My garden was completely transformed to a wooden delight that I can enjoy without fear of injury. It completed our summer being able to enjoy the outside as well as Jake and his friends having somewhere to chat, eat pizza and watch the night sky.
I watched both children graduate from their schools. Jake into college and Boo into secondary school. They make me so proud. The life they live has made them kind considerate and loving. Don't get me wrong, they both have their moments but the good times shine bright through what can be a medical fog.
Summer soon turned to Autumn and me and my girls, Roxy and Tika, watched the leaves turn then fall. My treatment continued and I unfortunately had complications which meant I was, again, in and out of hospital.
During this time my hair started to grow back, my cheekbones reappeared and probably looked healthier than I did before I fell ill. The truth was I'd started chemotherapy which recently turned to daily treatment of the drug. I've kept my hair but my eyebrows have given up the ghost. In an effort to keep motivated I rejoined my local slimming world and dyed my hair white, yes white.....
Autumn gave way or should I say laid down for winter and the house was brightly decorated for Christmas.  During this time I lost two wonderful women in my life.  The first was a friend who was a total inspiration, full of warmth, humour and love. The other was my grandmother. A key figure in my life and I miss her and her influence in my world. At this point, surrounded by glitter and fairy lights, I hit rock bottom. It was then that I heard of another loss to HUVS which left me shocked to the core.
I needed help to get through this and had to admit defeat in order to get it.  My new Dr was amazing and she has supported me from that moment.
Christmas charged in and was gone without even a wave and before we knew it the New Year had passed.
2016 started as it continued and I was thrust into appointment after appointment. To the point that I recently told the Professor I was 'appointment fatigued.'
My eyes, by this time, had been surgically fixed and I could drive again...freedom!!!!!!! It was amazing to be able to just get in my car and go.
As we career to Easter at breakneck speed I've once gain be asked to consider a new treatment to sit alongside the chemo.
It's now that I find myself with a more positive view of things. We know the days are getting longer, warmer and carefree. The promise of spring moving into summer allows me to consider rose-tinted days enjoying the company of family and friends.
With this in mind I told my mum to do something last week as I drove her down a country road in the speckled sun filtering through the trees. She placed her outstretched hand into the open air and "caught the breeze". She laughed and smiled at me. She understood.....
For all we've been through we still have hope and clasp the sun's rays.
Til next time




3 comments:

  1. Really glad to see you return Sarah. Must say you did have me wondering. I'd be very interested to know if your consultant is publishing anything anywhere. My condition has deteriorated a little, but was nowhere near as bad as yours in the first place. rolphmuller@hotmail.com

    ReplyDelete
  2. hello, I have been searching for info on HUVS, and found you and this page. My exhubby but dear friend, was diagonosed 2 yrs ago with HUVS, and they but that was after 2 yrs prior trying to figure out what was wrong with him. He is getting worse, his breathing is what is the worst on him now. And they are going to try another new drug on him, but was wondering if maybe you have some info you can share with us. you can contact me mushy64@hotmail.com, Thanks and hope you are doing better.

    ReplyDelete
  3. Hi I have been diagnosed with HUVS syndrome and found your post.

    ReplyDelete