Katy's picture

Info that we have got ready today.  We have to prepare for all possible outcomes, which range from me running a marathon next year, to disability or death.  Very difficult, but we have remained pragmatic.   I am getting ready for what could happen.  Underneath it all, I am delighted that they are removing the tumour quickly - let's get it out!

So, I have a growing list of questions for the support nurse.  Most are about the probably loss of speech and communication skills following the operation.  What communication support do they provide?

Can I take M and K on an orientation, so that they can see where I am going?

I have found some key papers eg my will.

I have written a living will - in short - if I am not going to recover, let me go.

My friend Gee is looking at a power of attourney document to make sure Dave has legal powers to make decisions for me, if I am not able to prove that I am of sound mind!  If you cannot talk, you cannot prove your sanity.

I have returned my driving licence - I am not allowed to drive.  I haven't been driving since I crashed into a bus about two months ago - I worked that out for myself before the double vision came!

We also had a little trip to John Lewis, but returned, realising that a trip to the Trafford Centre, in the rain at Sunday lunchtime was daft.  It was a nice little drive.

any tips are very welcome ...

Picture of Shirley Temple

Thanks so much to Sarah McCall for putting photo onto the BLOG.  Here is a slice of my tumour.  I believe it is jelly fish shape.  It ends up pressing behind my eyes.  It is in the speech section of the brain.  The middle of it is fluid.  It is growing.

Tonight's experience has been beautiful again.  We had tea together (pizza and mummy chips) and chatted over tea.  These are some of the things we are doing to help us all through what it to come:

• We will go to a beach hut when I am better, and have a whole day on a beach.
• We will make picture cards of the four of us, for the girls to keep in their pockets, if they are feeling like they need someone.  (I have run out of ink, so this is tomorrow's activity).
• Dave is buying both girls a phone to use, so that they can text me and send me photos.  We have had a laugh looking at what my reponses - if I have no speech skills then "I love you", may look like this "hfjaklhdfuiayepfhv".
• Anna Friedenthal is getting a special treat together - more news on this to follow. 

There will be more...

The night was finished off for me, and I had my first tears.  Katy came and gave me a beautiful card that says "I hope you get better soon".  It is covered in love and kisses, and she shows that she is understanding some of what is to come.  Interestingly, she made a skull in class, with no bone on the top part (to show brain), so she was confused that I had bone to be removed.  She got there in the end.

Martha remains focussed on her necklace.  She asked if she could wear it to school.  I said yes.  She is cautious about using our sign for "I love you".  I know she is understanding, and her expression is very calm and quiet.

Our night finished with a ruthless game of UNO.

my doctors

Neuro oncology clinical nurse specialist:  Alison Hope
neuro surgeon: 

The nurse will support  me through the whole process.   I talk with her tomorrow to ask all my questions ...

I have full confidence in the surgeon.  She was very confident and an excellent communicator.  Can't remember her name right now!!!!

First night in MRI

You will recall that I arrive on the ward at midnight.  I was introduced to a nurse and taken to bed 22.  It was so comfortable!  I was given some bed clothes and a delicious salad, which I ate and enjoyed.  I then tried to settle down to sleep.  I had to do MRI scan - take swabs inside my nose and along the side of my groin.  Blood pressure and pulse.  Blood sugar levels (a pin prick in a finger).  I then struggle to work out how to turn out the light.  This was pointless because other bays had lights on, so I tried to settle in the patchy light.  I am definitely high on steroids.  There is no sign of sleep at all.  I hear someone snoring to my right, to my left and directly in front of me.  It is incredibly noisy.  A lady starts crying, "I want to go home, I want to go home".  There is lots of talking around her bed, and she eventually settles.  I start to think that all will be quiet and a lady walks up the ward to the loo.  Now I need the loo, so I get up to go to toilet.  I am given some slippers that are rather like verruca socks, you pulled a sock up over your feet.  I found them very comfortable!  Back to bed with slippers on.  Take the slippers off - they catch on the blankets.  I am cold - there is a big air conditioning draft.  Nurse comes around to take blood pressure and pulse.  Every station, she puts light on, closes curtains, and takes the samples.  Then she opens curtains and turns off the light.  She comes to me, and I ask for another blanket.  I am told that everyone is cold because the air con has been mended, so ward has changed from roasting hot, to drafty channel.  I did fall asleep when it was day light, but was quickly woken again for more samples.
I was so relieved that they allowed me to come home the next day - I wouldn't have survived another night.

Grandma's toe nails

I had a lovely evening with Martha and Katy, and a sleeping Grandma.  Martha asked me if it would be ok if she decorated Grandma.  She decided to paint her toe nails.  They were painted green, and Grandma woke up, but genuinely did not notice.  She even showed us a burn on the top of her foot.  Martha and Katy are of course giggling.  Grandma drops off again, and they add more colour - alternate green and pink nails.  Katy then adds silver.  Grandma awakes and notices the nails.  They look fab!