Dropping Martha and Katy at school in the morning

Hi, On the way to my oncology appointment, I am being brought to school in the morning by my mum.  I am going to bring Martha and Katy into the playground.  Please could you treat me like I have been there every day.  Martha and Katy are very excited that I am going to do it, and so am I. 

love
Sarah x

Questions for oncology - neurology meeting 11 July 2013 9.30am

Questions for oncology meeting

I need to write a list of questions to ask when I attend the oncology meeting tomorrow. 

 

• What is the treatment?
• What are the effects?
• Can I go to Christies, because it is more local to me?
• new cancer treatments - any suitable for me to try?
• what has caused my muscle loss - is it steroids or just lack of exercise?
• physio to help build muscle strength?
• alternative therapies and diet (to use in addition to radiotherapy)
• When will it start?
• Relating to the effects of the treatment when can I go back to work
• How long does it take for me to recover?
• Where do I go for ongoing support?  Where do I go for any questions that can't be answered here?
• Support for my children?
• If they find the chromosome what happens with chemo?  Is it a good thing?

• I have asked if I can fly in an aeroplane, and this is possible.  I want to join Martha, Katy and Dave on Herm Island, if I can.  The registrar advised that I would inform my travel insurance that I have had a major op, and ensure that local hospital could help if required.  Again, this is a question for the oncologist.  If radiotherapy has to start before holiday, then the answer will of course be negative

Please send me some tips.  Thank you.   love from Sarah xxxxxxx  

Thanks for the fantastic book - brilliant idea :)

Look what arrived this morning.  This is a truly fantastic gift.  .  The gift is from Sally Bailey, and old uni friend of mine who lives in London.  It comes with a note offering to join me on my journey to visit a live volcano - from Sally, and Helen (Martha's guardian (god parent)).

Thank you so much.  This is amazing.  

News from my neurology meeting today

Hi there!

 

I will be going for radiotherapy treatment.  Please keep this information private and confidential for now.  I will let you know our progress as a family, as we go along.  Martha and Katy have looked at images of my brain only so far.

 

The operation

During the operation they removed bone, a cover to the brain ( I think) and drained and removed most of the tumour.   The bone has been replaced and is held together with metal pins (It is numb too).  They are very pleased with the work that they completed.  It took 3 – 4 hours.  The formal note of the operation was written by registrar at 1800.  The surgeon was very pleased with the condition of my scar and the rate of recovery.  She liked my hair do, too.

 

Radiotherapy treatment

The next step in my treatment is a meeting at Salford Royal tomorrow with oncology.  At this meeting we will discuss

·         Radiotherapy treatment

Radiotherapy will make me very tired – extremely tired.  People who are positive usually respond well to radiotherapy.   Tomorrow we will discuss, and plan my ongoing treatment.  Radiotherapy treatment takes place for 6 weeks; a  patient has to attend every day.  The tumour that I have keeps growing (this is what “aggressive” means). Radiotherapy stops the growth of the tumour.

 

Regular MRI scans

Regular scans will take place to monitor the progress of the tumour.  These will be used to decide on use of radiotherapy, chemotherapy, and to assess whether or not to conduct another operation.  I may have another operation in the future.

 

Possibility of chemotherapy rests with results of a test

The tumour is currently being tested to see if it contains 1p19q.  If it does contain this chromosome, then it would respond to chemotherapy. 

 

It is also possible that the tumour could convert to a grade 4.  Nothing is certain.

 

A happy symptom-free life

The removal of the tumour has given me time.  The registrar expects me to live a full and normal life.  Their aim is to keep me symptom-free.

 

My tumour - Shirley

I have ANAPLASTIC OLIGODEDROGLIOMA.  She is grade 3.  She  is malignant.

 

Grade 4 is the most aggressive malignant tumour, and my prognosis would be 1-2 years.  The registrar says that they were surprised to discover that my tumour was not grade 4, and is grade 3.

 Do respond to this - your messages really help me.  Any message is good.  :)

Shirley picture, and Shirleyless images - before and after surgery

This is a picture of Shirley before the operation.

These are all images of my brain, after the operation.  Notice the space in the front of the last image.  The space is behind my left eye (the right side of the image is the left of my brain).  This was where the tumour was causing double vision, and now I have a space. 

Katy can't sleep because of heat?

A middle of the night BLOG, but part of a good night so far, so don't worry :)  The big fab fan has made my room comfortable and my slumber occur naturally.  It is getting light and the birds are starting to sing.  Quite beautiful.

Katy had an awful night last night, and I am left not sure of the reasons for this.  In the end, I think it was because it is too hot.  I don't think the core of it was my illness, but don't actually know.  I guess in the end it is mixed. 

We made birthday party invitations.  She is going to play football in Longford Park on Saturday afternoon with mostly boys.  Then she is going to watch a film with girls.  I am unlikely to join in.  Dave is happily ready to be referee and to share out pieces of pizza.  My sister from Jersey is looking after me, while my mum heads home for weekend break.

Martha and Katy are currently sharing Martha's room while my Mum uses Katy's room.  Katy does not get settled in bed.  She is crying that she cannot sleep.  With my jelly legs, I am trying to help Katy get settled.  I invite her into my bed for a cuddle, and then return  her to her bed.  She is now trying to sleep on the floor.  She messes with the big fab fan and denies touching it.  I try to find some medicine -  medised, as a means of helping her sleep and discover that we no longer have any.  I give her calpol, which appears to work, for about 30 mins ...

At midnight we have Katy awake and crying (she even takes a picture of herself on her IPOD touch).  I move her back into her bedroom - making my mum use the front room (we have a mattress down there at the moment, too).  Katy and I go through her star chart for going to be on time.  We agree that she cannot have a star for tonight!!!   We do go through the last two weeks and give her a star for every day that she went to bed properly.  Adding up the stars we find that she has enough stars to win her prize - to go and see Despicable Me 2 in the cinema.  We agree that I will take her in two weeks time.  Her birthday party film is Despicable Me.

I sit on her bed, while she says she cannot sleep.  In the end she drops off and I return to my bed.

At no point has she shared any thoughts with me, except that she cannot sleep.  If I can get the photo from her IPOD touch, I will add it.  She looks truly awful.  She has puffed up eyes and a downturned smile and looks like she will never be able to be happy.  Her face is swollen and sad.  The problem here are my IT skills - I don't know how to use an IPOD.  I have a blackberry.

Martha has started using the "Ask it Basket".  This is a joy to me.  She has written an anonymous secret message that I will not share, and we have been able to talk about it. 

love you all

Sarah xxx