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

My drug regime

This has now changed to:

 0600                1 x omeprazole

 0630                2 x paracetemol

 0900                1 x dexamethasone (2mg)  

1200                1 x paracetemol

1800                2 x paracetemol
 1800                1 x dexamethasone (2 mg)

2330                2 x paracetemol
The changes have been a general reduction in pain.  This has negated the need for codeine, which has negated the need for drugs to help me pooh.

I still have the ticking in my had and bed squeaking, but it is occurring less and less.  I remain convinced that everyone else can hear what is happening inside my head.

Thank you for the gifts and a big fab fan loan

These beautiful flowers arrived from Chris, Melissa and Flori in number 7 Thornbridge Ave.   These flowers have a beautiful fragrance.    Thank you so much.

 

Here is my candle from Grace.  Katy nearly burnt her fingers lighting it.  It was my fault for not holding it at an angle.  It smells delightful.

Just what I need!  How fantastic.  Mandy and Chris, friends of Louise, brought me a fan to borrow, from their cellar.  Hooray - maybe I will sleep tonight.  Thanks loads.  It is fab.

Pictures of my mum and me

 

Good hair.  New hair styles. 

North Trafford School Sport Partnership - happy times, good friends

I have three good friends - Belinda Cashin, Julie Miskelly and Kay Statham.  We worked together in Trafford when I was a School Sport Partnership Manager.  We were based at Flixton Girls' High School.  Belinda was school sport coordinator - she taught in the school for three days a week, and worked for the Partnership for two days a week.  Julie Miskelly was the administrator for the Partnership, and worked part time for exams in school.  Kay was employed by the Partnership to help local people gain employment through sport.  There were school sport coordinators in six other secondary schools, and other employees of the Partnership, as the programme grew and developed.  I loved my job. I made good friends with Hannah Goddard from a parallel partnership in Trafford. 
My role was to increase participation in PE and School Sport in school and out of school hours.  We all made and reviewed our own targets - this was central to our way forwards.
We were employed by Jennifer Hart, head teacher of Flixton Girls' High School.  School staff like Julie Day and Rick Salt were incredible support to us.  Rick Salt remains a funny story, in that, I got him mixed up with Rick Astley (Big 80s singer - I'm gonna pick you up, I'm gonna put you down, I'm gonna ...).  I put his name in minutes as Rick Astley, and how we laughed about that.  With our help the school achieved Sports College Status.  Katy is a 9 month old baby when I start working at the school.  In my early days, I got all my breast feeding wrong and ended up with mastitis, and had to take two weeks off school very very sick.
When the head teacher changed the values of the school changed, and it became clear that it would be best for me to move on.  I applied to be Director of Sport, received an interview, but was not successful because I was not a qualified teacher.  I make the decision to retrain, so that I can apply for jobs at this level.  I leave to train as a teacher of maths, because I have a degree in maths.  There is lots of additional support for me because I am training to teach a subject in demand.

Belinda, Julie, Kay and myself have continued to meet up as friends.  We love the curry house in Sale, which is very close to Julie's house.  The chef created fish based meals.  The food was always exciting, freshly cut and delicious to eat. 

Hey girls - I can't wait until we can meet up again. 

Belinda has today sent me a voucher to spend in M & S.  It came with a note saying, "I bet you have loads of flowers".  How I laughed.  Yes I have loads of flowers (and I love them), and it was funny.  When I am well I will take the voucher to M & S and really enjoy spending it.  Thanks Belinda.  I love you.  I love you son too.  He is a beauty.

Sarah xxxx  

Martha doing well

Martha is doing so well to stay at school through our experience together.   She wants me to be able to take her to school.  She wants me to be able to fulfil my role as mother and follow our routines.  Martha, I am so looking forward to being able to take you to school - it is what I want to be able to do.
Getting ready for school today, Martha has crumbled.  She has homework to complete, and she is able to complete the homework in her head.  However, she could not find the words to write down her proof.  She thinks that her teacher will stop her from going on the homework trip - there is a special trip for the pupils that have done their homework all year, and Martha is one of the group.  They are going to "Go Ape" high level activity, for food, and then to see Despicable me 2.  What a great day out!!

Martha thinks that her teacher is going to withdraw her from the trip, and she will not listen to me telling her that this is not going to happen.

When she left for school, she was crying and overwhelmed by all her emotions.  I walked  out to the car and put her seat belt on, giving her a big kiss.  My mum watched me walk back into the house (rightly).

I fully expected her to be home again by now.  She has done really well to continue at school all day.  I called the school and let them know that she was upset; my mum said that her class teacher came and took her into school early.  I have written a note in her link book.  I want him to tell her that she will not lose her place on the homework trip.  If he does this, it will help her relax a little.

At the end of it all, what she is dealing with is a great weight of uncertainty and changes and lack of routine and sickness and love.  We love each other and will come through this together.  Martha, you are amazing.  I love you more and more every day - what I see is a beautiful, intelligent, thoughtful, loving young woman who is growing into a beautiful body shape of long limbs and beautiful slender curves.  You want to be an actress, and you are showing that you will be a good actress.  You have many friends who are with you in all the different things that you do.  Whatever you choose, I know you are making considered good choices.  I love you.   Mummy xxxx

Brain tumour hair cut - I love it :);)

 

Pictures of my "old hair".

I love it. 
Nothing more to say, except thank you to Mark, my local hairdresser who came to my house to cut my hair.  Great job, thank you.

Oncology appointment with surgeon - Wed (tomorrow) 1130 am.

Here it is - I go to see my doc tomorrow to find out what they found in my brain, and how we are going to finish it off forever... 

Dave is annoyed that the meeting clashes with his board meeting.  Sorry Dave.

Bad night

I had a terrible night, last night.  I could not settle.  The room is too hot.  I have a fever.  I open all the blinds to allow any air into the room, but of course the air is still.  I get no breeze.  I try to turn on my fan (usually used to dry wet beds!!) and discover that it isn't working.  I have no moving air.

I try various things to help me sleep eg reading my book, lying with my eyes closed, reading the paper (Andy Murray - I am weeping with glee).  Nothing works.  I give up and tidy up the top of my chest of drawers.  I put my running medals on two sides of a Renne Magritte poster - the one of two faces kissing:  the faces are covered with greyish cloths.  I empty my make up drawer of drugs.  It is half full of various solutions to my "depression" , for example, vitamins, ibuprofen, paracetemol, and Katy's asthma inhalers, eye drops, eye patches even.  I had a genuine eye injury a few years ago, where I scratched my cornea and was literally blinded in one eye for weeks. 

After this, I lie down and close my eyes for sleep.

I do sleep.  However, I have the most awful nightmare.  I dream that I am in a house, and that I fall over flat onto my face.  I am aware that my family are behind me - my mum, my two sisters and my brother.  I am in agony, and I cannot believe that they are not coming to help me.  I am trying to shout, but cannot call out.  The noises I am making are grunts and moans and no words emerge.  I eventually wake myself when I have built myself up to shout "MUM!".  My mum is at my side. 

After this, I do fall asleep.  I sleep properly and wake at 6am ready for next round of drugs.

I phone my sister, Max who is always up bright and early.   We have a good chat.  Thanks Max. 

A little bit of fun

Katy with a tomato in both cheeks.  Martine Jones behind - great to see you :)

 

beautiful flowers arrive from staff at school - thank you so much

I don't know if you can see the detail in this bouquet of flowers.  They are a beautiful range of fragrant blooms.  Truly beautiful to look at and to smell.  Thanks to my work colleagues - I will enjoy them.   I love you all.  The flowers are Kenut, Calendula, Cauflower, Azzum Rewsts, Acconuths, Panifolia, Ecaliptus.  

Thanks also to Stuart and Jacky for these beauties too.  You are such good neighbours.

Martha's questions ...

Here is Martha, enjoying one of the cup cakes that Sally and Alan sent.  She is in our back garden.  Dave cooked us a barbecue.  It was a very pleasant outdoor evening in the sun.

I retire to my bed, and Dave takes Katy on her bike to cubs.  They are doing a cycling badge.  Dave is on his bike too.  I realise, after she has left that she had no helmet on.   Oops!

Martha joins me in my bed and is finishing her numeracy homework.  It is very tricky because she is getting upset about not being able to write her conclusion to a problem solving question.  If you add up the numbers of three adjacent houses, does the sum divide by three?   Can you do it?  Martha can do it, but then struggles to write down her final summary.  We end up putting it aside, and I ask Martha what she would like me to do.

Martha wants me to come downstairs and sit with her on the sofa while she watches TV.  This is very Martha, and of course, something of a pre-tumour routine.  I would sit on sofa with her and watch TV.  I agree to do this.  We find ourselves watching a recording of Johnny English, which I found very funny (in a steroid kind-of-way).  Martha finds me funny too.

Katy arrives home at the end of the film, which is perfect timing.

Martha asks me if I will read to her.  Again, this is part of our pre-tumour routine.  I say that I will but that I will have to sit on a chair in her bedroom.  She suggests that I read to her in my bed, which of course works very well for me.  She gets a new book - Cinder - and I begin reading it.  The words are in very small type, so I ask Martha to find my reading glasses.  They have a prism added to them (lots of lines across a clear piece of tape), which I happily remove.  I no longer have double vision.  My double vision was removed with Shirley.  I read to her.  When I finish, we talk about the book and she says that she doesn't get it yet, and neither do I!  We agree that we will continue and see what we learn.  Cinder is a robot and talented mechanic who has met a crown prince ...

Martha then asks me, when will I be better? "How many days, weeks, months or years?"  Wow, what a question!  I say that I am waiting to find out when I have an appointment at the hospital.  At this appointment they will tell me what they found inside my head, and we will talk about how to make it better.  I do not know yet what the treatment will be, but that I expect to be told that the tumour is malignant (cancer) and that I will need radiotherapy and chemotherapy.  I say that I think I will be ill for the next 6 months.   She asks how long have I been ill already, and I answer 3 months; Martha says, so you will be better in 3 months.  Of course, I have to say no.

When Anna came to see me recently she suggested that we have a worry box.  This is a little box that Katy and Martha can put any worries in, any questions in; they can put anything in it at any time, as I can.  I bring up this idea for Martha.

Martha really likes the idea.  She calls it an "ask it basket", which I believe they use in  school for PSHE questions.  She begins describing to me how we will use it.  We can have a time when we look in the basket to see if there are any questions.  Questions are anonymous.  We can take it in turns looking and seeing if we can answer the questions ourselves.  These are all great answers for me.  While I talked with Katy she is very happy to have an ask it basket too.  Returning to Martha, she has made a lid for the box.  The box was given to her by my sister.  It is a small wooden box with a lid that lifts up.  The lid is now decorated with "worries:  ASK IT BASKET".

Martha and Katy, I love you both.

Mummy xxxx

Gifts arrive from Sally and Alan, and from my NCT friends. Thank you

Thank you so much for these lovely gifts.  The flowers are from my friends in the National Childbirth Trust.  We all had our babies together.  We supported eachother through caesareans along the way, and believe me a C-section is worse than the removal of a brain tumour!!!

My mum has taken the picture of me with the cake.  These are from old uni friend Sally Bailey, and her husband Alan.  Alan is a best friend of another uni friend (Helen) who taught English in Japan.  Helen introduces Sally to Alan, and they make the perfect couple.   

 I am not keen on the size of my belly!!!!!  But guess what, I am going to enjoy the cakes, and I will get an even bigger belly.  Martha and Katy and Dave will be very excited later - we are having a little BBQ - followed by cakes.  The cakes are truly delicious. 

Thank you so much. 

Sarah xxxx