Good Christmas!

Good evening all!
Recalling all the events from our Christmas, so far, will be a challenge. 
Christmas morning, Katy is up early and comes to bed with me.  The four of us open presents together.  Dave, cooks a giant English breakfast.  The day that follows feels like about five days!  From my house, to Joan's (Dave's mum) - tea here and toast; from Joan's to Dave's brother's for dinner, gifts and games; from here, back to Joan's.  We stay at Joan's overnight, and the girls have stockings on boxing day morning.   We all have an amazing time  - Martha, Katy and Grace (cousin) all have a ball.

My health has been improving gradually over time. Regular sleeps remain part of my daily routine.  On Christmas day, I had to have a few!  No-one seemed to mind at all.  I opted in and out of the day, as best I could, with a bed to use as, and when, it suited me.   I am struggling to eat.  Tasty as it was, my Christmas dinner was minute, compared to last year's; and, I was unable to finish it. 

Other bits of health - my hair is steadily growing back.  My monk-look has diminished from 12cm diameter, to about 7cm diameter.  Steadily growing, it is starting to return to a normal head of hair.  I have half a new fringe creeping down my forehead.    I am also starting to look like myself again.  Since finishing the steroids, my face has been recovering; when I look in the mirror, I feel like I am looking at myself, not a cancer victim.  Hooray!

I currently have two girls on a sleepover.  I keep being reminded of my duties.  It is not as simple as having two extra girls for dinner and bed.  Martha and Katy tidied their rooms; we have made two extra beds; we have made rules about sleep time, and the consequences of not being asleep on time.  The girls have made a Strictly Come Dancing video (to Bang Bang, I am told), and are currently watching Despicable Me 2. I am reminded that I must make a midnight feast.   Wish me luck ...

Happy Christmas!

That's it!  Enjoy the festivities.

loads of love

Sarah xxxx

Ok today

I had to sleep this afternoon, but on the whole I have had another good day.  Christmas shopping is finished - Martha and Katy bought each other presents this morning.  Dave's present is organised.  Next job is to wrap them.

I have taken a form to my new doctor to complete, that is medical evidence that I am ill; and collected a leaflet for Martha from old doctor.

Katy earned a reward by collecting 15 stickers, over time, for getting herself up, dressed and full of breakfast in the morning.  We went to see Saving Mr Banks.  I was worried that it was a bit adult for her, but she really enjoyed it. The title is correct, however, I keep wanting to call it Saving Private Ryan (also Tom Hanks).  Both Katy and I can't wait to watch Mary Poppins, because we now have the history behind the characters.

Christmas Eve tomorrow - have a brilliant day. 
lots of love
Sarah xxxx

Feeling much better

No sleep for me today!  This is a first in a long time.  I got up feeling fine.  Breakfast, one nit check and I am persuaded by Martha that I should join them, and visit Joan, with Dave.   I spend a few hours at Joan's, and I am feeling OK.  It was only around 3pm that I realised that I had not had a sleep, and that I did not have the overpowering drowsiness that I experience every day.  Who knows if this is a breakthrough, but for it to happen once is surely a good sign.

I have had to accept that I will not be able to finish my Christmas cards in time.  They are going to be New Year cards now! 

Good night!
Have a great Christmas week
lots of love
Sarah xxx

On the recovery

It is only one week a month, so most of the time I am relatively well.  I am coming out of my chemo-sick week, which has been compounded by a heavy cold.  My immune system has been attached by chemotherapy through the whole of the summer, and during my current programme, and I have been recovering from a major operation.  Again, I can only celebrate - this is the first illness that I have picked up since I was diagnosed in June.

Panto
I am not sure I can remember what has happened this week!  My mum has been here helping us out.  I made it to the pantomime with Martha and Katy, on a school trip.  In this one, a "Chris Biddle" was playing ratty rat - we were watching Dick Whittington.  Panto was good - I love it!  I always feel very British at the panto.  We are so lucky to have pantomime. 

Carol Concert
The next day, I was in really bad shape.  I have barely eaten all week.  I made it to the school Carol Concert in the evening.  Martha - steel pans (white Christmas) and guitar (jingle bells); Katy in the choir and trumpet (Rudolf the Red Nose Reindeer).  Again, I am a wreck the next day.

Piano evening
The piano evening, takes place at Ella's house.  Somehow, I manage to get there (I have been in bed all afternoon).  I know the parents very well, and they were relaxed about me lying on the settee in the "quiet room".  So, I lay and listened to all the music from the other room.  There were McCaffers, McCallwards, Robinson-Carmichaels and Mia's family from school.  These families have the same piano teacher, Sarah Wright.  Each child had a Christmas piece to play.  In addition to this, most children play other instruments, so Katy added trumpet duet, Martha played guitar, Alfie played the sax (he is a talented boy).    

I didn't make it to Chorlton CE Christmas dinner.  I would have arrived in tears - it was just too much.

New Doctor
I have a new doctor.  From now on, I am with Dr Cooke.  I don't know the name and address of surgery yet!  I can walk there.  He seemed very nice, and comes with good recommendation.

Tax Credits
I have to send my 8 page tax credit letter to all the benefit providers, using original copy only.  As part of benefits process, I called tax credits to give salary changes, and the copy that arrived showed that I was receiving working tax credits.  If you receive working tax credit you do not qualify for any benefits.  I wait until Monday to call Macmillan for advice, and I am told that I have to be specific that I have lost by statutory sick pay.  I call tax credits, and they withdraw the working tax credit and tell me I will be in debt (any tax credit user will understand this is the norm).  I have not yet received my written notification, so I can't send off my benefit applications. 

Martha
Has had to have blood tests. The first showed one result that doc wants to investigate further.  We went for second blood test on Friday morning, with Martha on an empty stomach.  Martha is so cool about it.  We went for breakfast after the blood test, in Battery Park.  She loved it!  "I can't believe I had hot chocolate for breakfast", she smiled at me,   "Can I tell Katy?".  It was one of those experiences that will stay with me for ever.   She had a bagel and cream cheese, was really relaxed and had no worries about being late for school because they were watching a film that she knows well.

Christmas
It is Christmas on Wednesday.  I have written a few cards for school, but have not written most of them, or bought/organised presents!  I am going to see what I can do today, and then just try and forget and enjoy it.  Expect a card in the new year!!!

Have a good weekend
lots of love
Sarah xxx

Internet working :)

I have been doing well, but I have now slipped into my "not well" week.  I have a heavy cold on top of my reaction to chemotherapy.  I was vomiting sick in the night, which was unpleasant, but also relatively good, because I managed myself out of it using drink and drugs!!

My phone is not working properly either, so I have been a bit stumped on communication!  I have to take it to the shop to get it mended, at some point.

I will write more later.

Love you loads

Sarah xxx

Charlie and Choc factory - pictures

 

 

chemo day 2

I took Martha to have her blood test this morning.  An amazing growing girl, lay back on the bed and allowed the nurse to take blood.  The nurse covered the pin prick with cotton wool, and then gave Martha a plaster.  Later in the day, I had my MRI scan and I had cotton wool on my canula wound.  We removed our plaster/micropore tape and cotton wool together tonight.  The experience opened up genuine conversation about my treatment, and that I have blood tests every time I go to the hospital.

My MRI scan was fascinating, because I had forgotten all the protocol.  No metal is allowed into the scanning room:  earrings, belt, watch, money...  The scan was just the same - this is the one with all the whirring, buzzing and even shaking, this time.  I have a cold, and I had to cough in the middle of it.  I tried for ages to overcome it, but in the end it came on its own.  I don't know how long it took - about half an hour in the scanning room.   Canula insertion and removal took place before and after.

Katy decorated the tree tonight.  Hooray - we are getting Christmassy!  Christmas cards tomorrow, I hope.

 



Have a good weekend
loads of love
Sarah xxx

PS. Martha has no homework this weekend.  I am so happy!

Antibiotics ...

I took Martha to the doctors' today.  She had an MOT and has to go back tomorrow for blood tests.  I agreed to the blood tests, because I am hoping that they find nothing at all, which will free Martha to recover.  Our appointment was an hour late. 
While we are waiting, I have become shivery and chilled.  With the doctor, I ask if I can borrow the thermometer, and the doc says no!  I add that I only want to take my temperature, and she laughed because she thought I wanted to take it home.  Temperature taken, and I have a fever over 38 degrees.  She then gives me an MOT, and prescribes antibiotics, that I am instructed not to take until she has called me to confirm that this is the best option. 
On the way home, I drink paracetamol and then wonder if I should call Christies.  I decide not to, however, I had not realised that the doctor was phoning Christies, so they call me.  The person who rings me goes to check with my consultant what we should do next, and fortunately, they decide that I should take the antibiotics and continue the chemotherapy.

I go back to the docs tomorrow for Martha's blood test.  I am booked in for an MRI scan, in the afternoon.  I am thinking that I may have to postpone it.

My mum has arrived today, and has gone to watch Charlie, tonight.  I am very relieved that I went last night.  If I hadn't, I would not have been able to see it at all.

That's it for now.
loads of love
Sarah xxx

Charlie and the Chocolate Factory :)

I have had a busy day.  I took a kindly offered lift to The Christie Hospital, for an appointment with my consultant.  In summary, a long wait for a blood test followed by a long wait to see consultant, followed by a long wait to get drugs.  Unknowingly to me, my chemo drugs were increased last time, which explains why I wasn't ill the first time.  My consultant recommends that I must continue on the higher level, and take anti-sickness drugs.  Watch this space.  I am hoping to have a good spell :)

While I am waiting for my drugs, Chorlton CE get in touch to ask me to collect Martha, because she was ill.  After calling three local mum friends to see if they could help, and getting no answer, I remember that Ewa (wonder cleaner) is at my house.  She kindly agreed to go an collect Martha.  When I got home, Ewa was leaving because she had received a call saying her son was ill, too.  It has been one of those days...

I set Martha up watching a Studio Ghibli film, about beavers in Japan, a cartoon.  I have to go to bed.  What a pair!  Martha is comfortable to go back to school to perform as Grandpa Joe, on the condition that I was there.  I think that I can still go tomorrow night, with my Mum.  I wouldn't let Martha go in her onesie, even though she said that everyone was doing it.  Hmmm, she was correct, but good spirited about it.  I think I am forgiven.

Charlie and the Chocolate Factory - great production!  Martha performs very well, looking old and putting emotion into her lines.  Katy performed perfectly as an oompa loompa, and said her line about Veruca Salt.  Fantastic! I really enjoyed it.

I am now late to bed.  Martha will not be going to school tomorrow because she remains sick.  Her teacher has told her tonight that it is best if she rests tomorrow and comes back to school in the evening.  She has a doctor's appointment too. 

Good night!
lots of love
Sarah xxxx

PS.  Our Christmas tree remains undecorated.  Maybe Martha will help me tomorrow.

Tree still standing :)

My walk was beautiful this morning.  A clear Autumn morning, with a low sun peeking through the trees.  I took a picture of the apple tree, full of ripe looking apples.

Dave's mum came over for the morning.  We completed a few chores.  Despite my best efforts, I had to go to sleep. and Joan cooked me lunch.  We met Dave in the local café, and then they went to see Charlie and the Chocolate Factory.  I am told it is really good.  I will go on Thursday with my Mum.

The evening has been moving Martha and Katy around to clubs.  Martha and Anya went to drama, and Katy went swimming. 

I have a sore throat.  I go to see my consultant tomorrow at The Christie Hospital. 

Our Christmas tree is still standing.  We have not decorated it yet.  Katy's observation was interesting to me - she said "The tree isn't getting smaller; I am getting bigger".

Sleep time for me
lots of love
Sarah xxx

New Christmas tree :)

Christmas tree drama
I couldn't bear it.  Our Christmas tree was propped up on bits of wood, and I felt serious stress every time I looked at it, thinking it would fall over again.  Decorations were still on the floor.  I called the shop it was bought from, and they were excellent - I now have a new tree.  I had to take off two sets of lights, but it wasn't too bad.  I feel much happier now!  I will decorate it tomorrow with Martha and Katy (again).

Drain drama
My outside drain (kitchen and bath) was blocked by leaves.  I had to move a big pile of leaves to clear it.  Martha and Katy will have to help me with this at the weekend - my back garden is full of leaves.

Vacuum Cleaner - new belt - massive drama!
It has taken a few weeks, but I have finally got a new belt for my vacuum cleaner.  It was ordered three times - third time was lucky!  Vacuum cleaners are never designed to give you clues about how to mend them.  I got there in the end.  Of course, I had to go to bed after that!

Charlie and Chocolate Factory
The show starts tomorrow.  Joan (Dave's mum) is coming over for the morning, and then going to watch with Dave.  I will go with my mum, on Thursday.  Martha started panic rehearsing before bed, but was easily persuaded that sleep was more important.  Katy is simply proud of herself for having a line.   Dave and Joan came over tonight to see Martha and Katy.  I have just seen some of the London CCF, in the Royal Variety Performance - I have recorded it to watch in the morning before school.

My health
I still have one swollen eye.  I think I missed this off yesterday's review, I think - My eye sight has deteriorated.  I cannot read my phone without reading glasses.  I have to have my glasses when reading books with the girls.  The problem that I have, is that it is impossible to know if this is because of the tumour, or because of my age.  Either way, I don't like it at all.  I am going to have to buy some more glasses - I only have one pair, and I keep mislaying them.

Benefit claims
Someone woke me from my sleep with a phone call and I was instantly dying for a wee!  I asked if they could ring my back, and she declined, asked me a couple of questions and then asked me to send in the application.  I don't know what application she means!  I know she was from the Department of Work and Pensions.   I made it to the loo, just in time.  I am going to have to look at this tomorrow.

Have a good day tomorrow.
lots of love to you
Sarah xxx

Christmas Tree falls over

Christmas Tree
When you want everything to be simple, it rarely is!  Our Christmas Tree fell over and came out of the stand.  It has now been re-erected, but remains skewy!  The decorations are mostly on the floor!  Another job for us tomorrow.

In bed mostly
Yesterday, I spent most of my day in bed, apart from a little jaunt into the bath.  I did have a walk to the post office.  Martha and Katy had a busy day out with Dave.  They were home in time for Strictly :).

Homework
Today, we spent all morning completing their homework.  Martha was reviewing Nelson Mandela's life and, for numeracy, problem solving.  Katy completed a numeracy test and wrote rules for surviving school.  Katy had additional web-based homework, which I think must have been set by accident.  She completed median, and mode questions.  She skipped the histograms!

The tree keeled over during the homework.

Steel Pans
A giant cooked breakfast for lunch, with perfect eggs!  Martha played the steel pans in church, this afternoon.  I took Martha and Katy there, but had to come home again, feeling very poorly.  Back to bed ,,,  Friends brought them home, and gave us all a lift to swimming club.


My health
I think I am on day 5 of no steroids.  My left eye is swollen, but is not uncomfortable.  Half my hair loss is growing back; I am now half a monk!  My head remains painful to touch - it is usually uncomfortable when I am trying to go to sleep.  I am not taking many painkillers, which is good.

Got to go back to bed!
Have a good week
love Sarah xxx

All Ok - will write tomorrow

Continued benefits applications

Big Comedy Club
At 8.05 am, the three of us met Sasha at the end of the road, to head into school for 8.15 am start.  It was Big Comedy Club performance at 9.15am.  Sasha and Martha went in early to practice.  The performance was amazing.  They were all brilliant performances. 

Free School Meals application
I spent until 1 pm completing this form. 

Sick note
I phoned up for a sick note, and collected it today.  This was remarkable efficiency for my old GP.  I can't remember who I have to send it to - but will work this out when I am feeling awake and alert.

Steroids
I am on day three of taking no steroids.  I am tired this evening, and my mood is very low.  I have started falling into tears for no real reason.  I know it will pass.  I have just got to come through it.  My answer to, "What do you want for Christmas?" is "A pill free holiday!".

Christmas Disco
Martha and Katy have been to the school disco tonight.  I turned up with a vague plan to go and help.  I took a father Christmas hat to wear.  When I got there, I couldn't stay.  Too busy and fussy for me, today.  All I wanted to do was sit down and watch.  I snuck away! 

Martha and Katy both really enjoyed it.  Katy won a bright green bag in the raffle, and showed me other prizes that she picked up. 

Have a good weekend
loads of love
Sarah xxx

Strong winds

My morning walk was blown off by the strong winds.  I made it to the meadows, fighting hard against the wind; I had watched bins blown over, and got leaves in my eyes.  Simple thought - is this the best time to be walking near trees?  I walked home again.

Strictly Chorlton Dancing:  Martha represented Chorlton CE by dancing in a local school.  This is rare, but I couldn't organise lifts that enabled me to go and watch.  I collected Katy from guitar, and Martha was brought back by another parent.  Martha thinks they danced well.  I am told that I can watch it on St Johns RC primary web site tomorrow.

Charlie and the Chocolate Factory
Katy is excited that she has a line in Charlie and the Chocolate Factory.  She is rightly proud of herself - few year five pupils get this opportunity.

Nelson Mandela: I have just heard on the radio that Nelson Mandela has died.  I am sad and proud - he was an amazing man.  We are all very lucky to have had him in our lives.
lots of love to you all
Sarah xxx

Christmas Tree up!

Martha gets up on her own:  Following a long conversation with Martha, in her bedroom, I discovered that I had been talking to a douvet.  Martha had got up by herself, and was writing a letter to her pen friend in Australia (Jo Myer's daughter, Jess).  A fantastic start to my day!

 

Morning Walk:  Here is the morning sun reflected in the River Mersey.  Yes, my eyes were stinging!  A photo does not do the brightness justice.

 

 

 

 

New GP (nearly):  I have started the registration process with another doctor's practice.  The registration appointment is next week.

 

My current GP:  I am walking away.  I couldn't attend the meeting with the practice manager because I was afraid that I would not be well enough to have the conversation that I would like.  Projecting forward, I could only see that I would end up feeling worse, not better.  In summary, I have said what I want to say.  My current priority is to stock up on drugs for me and the girls over Christmas, for the transition.

 

Steroids:  For now I am no longer taking them.  I was taking an eighth of a milligram.  Let's see how I get on with none.  I have talked this through with my Macmillan nurse. 

 

Hair:  I am growing hair on half my head.  My eye brow is thickening up nicely too.

 

Christmas Tree is up:  Our Christmas tree experience tonight tells me how little energy I have.  The box of decorations is unachievably large!  How we put them all up last year, I don't know!  We will have minimal decorations this year.  Dave bought us our tree - how I love the Christmas fragrance it brings.  Here are the girls, celebrating finishing.

 



 

 

Have a good day
lots of love
Sarah xxxx

All ok - will write tomorrow :)

Christmas is coming!

We are not ready at all for Christmas, but no doubt we will pull it together in time.  I have lots of little jobs that I have not got round to, but I guess it has been one of those years!

I still have one swollen eye.  I can't stop taking the steroids until my body has this phase in order.  My problem is that I would really like to be steroid free over Christmas - NO TABLETS.  The advice that I have been given is to listen to my body.  I think I will still be taking steroids through Christmas.  I will discuss this with my Macmillan nurse, on Wednesday.

My hair has started growing on half of my head.  I have baby hair - fine hairs that are growing closely together.  The other half remains bald!

I went for my walk with Anna.  I slept.  I pottered.  I went to collect Martha.  Katy was brought home by Tanya and Rosy, after football.  I have cleaned my kitchen, and generally I have been feeling quite well.

Bed now
lots of love
Sarah xxxx

Sunday in the Park

Hi there!  Martha, Katy and I had a lovely time in the park this morning.  They love this tree.  It has a nest about two thirds the way up.  Katy and Martha climbed above the nest today.  They both swung off the branch that Katy is lying on, as their form of dismount!

 

We had a cheerful lunch, and then we started playing in our "band".  Martha playing chords on the guitar, Katy on the trumpet and I was playing the piano.  I still need to practice!!  Between us, we can all play Jingle Bells together.  We tried Good King Wensceslas (spelling?) - guitar and piano.  I need to speed up.  We are having a little Christmas piano night with our other friends who are learning the piano:  Martha, Katy, Ella, Hattie and Alfie.  Throw in a few mums, dads and the piano teacher, and I think we will have a good night together.

Dave has taken the girls swimming.  Strictly Come Dancing later, then bed :)

Have a good week
love
Sarah xxxx