The New Normal

0
COM
Labels: , , , , , , · Posted by at
We are slowly setting into life back at home, our new normal.  Things feel incredibly different and the 15 days we were away for don't seem a fair reflection of the journey we have been on.

It's strange being out and about.  I am very self conscious, like everyone can tell that things have changed, that I am now different.  I feel like people are staring at Hugo, even though no one has any reason to and I know it's all just in my imagination.  Hugo of course is taking it all in his stride and is loving being out and about after his 15 day confinement.

Read more »

Home Sweet Home

1
COM
Labels: , , , · Posted by at
Our stay at GOSH has lasted 2 weeks, but finally, 15 days post diagnosis and 11 days into treatment, we are allowed home.

We prepare to leave armed with a large bag of medication, with numerous leaflets and booklets.  We have a medical kit in case of accidents with Hugo's wiggly, and a blue folder with the rather catchy title of 'Family Held Record - Paediatric & Adolescent Cancer'.

Read more »

Freedom!

0
COM
Labels: , , , · Posted by at
Freedom! Well almost. Perhaps a small step towards freedom is a more accurate description. Today we have been allowed outside.  After a blood transfusion yesterday, Hugo was taken off fluids so is no longer hooked up to a drip, there is no trolley to trundle round behind us everywhere we go.  
Read more »

Teardrops

2
COM
Labels: , , , , · Posted by at
Since diagnosis, 7 days ago, I have had to hold Hugo as he cried while numerous medical staff tried time and time again to insert fresh cannulas into his small hands.  Telling him it will be okay, when it was anything but okay.  Knowing it needed to be done, but still feeling like the worst mum in the world.  Wondering whether the trust between us would be forever damaged.  Now today, they have surrendered and this morning me and his dad took him down to theatre to have a Port inserted.  This is small chamber which is placed under the skin, over the rib cage, which links up to the jugular vein in the neck.  It can be used to take blood and also give chemotherapy, fluids and blood products.  Hugo would have had one fitted in a few weeks, but it has become necessary to do it earlier than planned.
Read more »

Phase 1 - Induction

0
COM
Labels: , , , , , , , , , , · Posted by at
It has been 4 days since Hugo was diagnosed.  We spent the first night at our local hospital and were then transferred by ambulance to Great Ormond Street Hospital (GOSH).  The last 4 days have been a whirlwind, an intense and often surreal experience.

Read more »

The Moment

3
COM
Labels: , , , , , · Posted by at
This is not how I imagined it.  Not that I'd given a great deal of thought to it you understand.  But, I'm not alone am I?  In letting my mind slip, my imagination take hold and to wonder 'what if'?  Maybe it is just me, I've always suspected I have an over active imagination, I tend to spend a lot of time wondering 'what it' about all manner of things and situations and much of the time those wonderings gather pace and before I know it I have full blown scenarios dancing through my head taking on a life of their own.  Receiving a cancer diagnosis was no exception.  When it had played out in my head I'd imagined an office, a sympathetic looking doctor sitting behind a desk, a concerned looking patient shooting nervous looking glances at a supportive partner or friend, bracing themselves for news.  What I hadn't imagined was a cubicle in a busy, noisy A and E department.  Yet this is where I find myself.  The sympathetic looking doctor is here, a little young maybe, but definitely fulfilling the 'sympathetic looking' requirement.  But there's no desk, no supportive partner to hold my hand.  Just me and my 2 year old son and he most definitely wasn't meant to be here.

Read more »
Subscribe to: Posts (Atom)