My day - I am improving :)

My day today has been a big improvement on yesterday.   I had a cuddle with Martha, and then a cuddle with Katy in my bed.  I woke at 7.30 am having had a few hours sleep once the birds had started singing.

I helped the girls get ready for the Beech Road festival.  They organised a stall to paint people's finger nails.  They were raising money for RSPCA and the park.  I don't think they painted anybody's nails in the end, but they really enjoyed getting ready for it.

My mum said that I was doing too much, and she was correct.  I went to bed and fell asleep.  I had an hour and a half, completely conked out.  I woke in time for the Murray - Djocovic  tennis final, and spent the afternoon watching the match. 

My arms and legs feel like jelly.  I cannot move around much at all.  I feel weak.  I can only move up and down the stairs with my mum lower than me on the stairs, because it remains a big challenge to negotiate the stairs.  I fear falling on the stairs - my legs don't work.    I tend to stay in one place for as long as possible. 

However, my headache is improving.  I took one codeine in the night, and have had no others today.  I have kept the pain back using paracetemol only.   What happens is, that as the paracetemol wear off, there is a growing dull pain inside the LHS of my head. 

The digging and the squeaky bed are both disappearing sounds.  These sounds are coming less and less often. 

The outcome of not taking the codeine is that my pooh is returning to normal consistency.  Hooray!!!
My drug regime is therefore changing.  I will only take Senna at night,  for a couple of days, and see how we go.  The steroids, paracetemol, omaprozole remain core.

So, after the tennis, it was back to bed.  Martha and Katy painted my toe nails, and Martha finished her literacy homework. Katy read Horrid Henry.  I drew a little picture of myself in Katy's link book - a smiley face with a short hair scar over the top.

Underneath of this it, I feel fantastic.  My mood continues to be bright.  I feel powerful and light. 

I expect to be on the phone soon ;)

Love you all

Sarah xxxxxx

Scissor ear-rings - gift from my MUM

Brought a smile.  Thanks.

Questions for oncology meeting

This is a list of questions that will grow over the coming week.  I expect my oncology appointment will be on Wednesday or Thursday.  Advice from Anna, is make sure you take a written list - don't walk out of the appointment having forgotten some key questions.


How long was the operation?
What did they do?
Has the tumour been photographed - if yes - can I see the photos?
What is its pathology?
What are my next steps in treatment?
What will be the effects of the treatment?
I don't think that it is possible to get a secondary cancer from this tumour.  Am I correct?
When can I fly in an aeroplane?
What has happened to the muscles in my body - is it due to drug regime, or is that I am not exercising at all?
Any alternative therapies and exercise regimes that I can follow safely?

Any suggestions would be welcomed. 

Beech Road Festival

As you know, I did not attend the Beech Road Festival.  Martha and Katy attended and had a brilliant time.  The girls went on the Jungle ride funhouse, inflatable slide - giant slide, bought drinks, candy floss, a hot dog.  A man drew a picture of Katy, which I like, because it looks like my sister.  I think Katy will look like the picture in ten years time.  The girls played with Issie Boyd, Izzy Jones, and Sasha, Luca, Alfie, and some people from year 6.  They did hoola hoops, stilts, juggling, one wheeled bikes, and rock music of course - see above.

You tube clip of Year 4 at Royal Northern College of music:  http://www.youtube.com/watch?v=KVUBVwE_PeA

Shirley out; Murray wins Wimbledon

We have a Wimbledon Champion.  Hooray!!!!!!!

Beech Road Festival - do not drop in, sorry.

Hi all,
I will be thinking of you all today at the Beech Road Festival.  I am not up to visitors yet, and hope I will be up to seeing you all soon.

Martha and Katy will be at the Beech Road Festival.  They are planning to make a little money for the park by either selling cakes, or by painting finger nails.  Have loads of fun with them.   My mum will be there too - I am hoping she can relax and make the most of the event.  
I love you all

Sarah xxxx

Giggling hysterics ...

Yes, I have had the giggles.  Ben, I phoned you so that you could have a laugh and join in, but you didn't get woken by the call.   Maybe another night...

Following the visit by the doctor today, I have relaxed and gone with how my body is reacting to the drugs it is consuming (still in large quantities).  I get up for the toilet and I am telling my mum that I am fine, but the giggles start.  The difference tonight is that I have just joined in, and what a laugh it has been.

My mum has videoed me too.  When I can work out how to put it onto BLOG, you can have a look and a laugh as well.

She says it is like I am in Mary Poppins.  I think I was mounds of growing bubbles, that bubbled on bubbles, until my giggles are the tiniest bubbles that you could ever imagine.  I have howled with laughing about anything at all.

love you all

Sarah xxx