Happy Halloween

We didn't make it to London because of Katy's tonsillitis. She is on the mend, but very up and down with it. 

My long-time friend Edwina and her daughter Mary have come to Manchester to see us.  This is great news because we have not seen each other for about 14 months.  Our ice-skating trip became trick or treating.  This is not my favourite activity, but a big hit with the girls, of course.

Here they are ready to go out...

 and on their return.

 

 

Ed and I have been catching up.

 

Gotta go

Have a good day

love

Sarah xxx

Tonsillitus cancels trip to London

Pyjama Day
We have had another pyjama day.  Katy has not got dressed at all.  Martha has been out with Dave, but Katy has had to stay home.  Martha has a new denim jacket that really suits her.

Katy was very poorly all through the night.  She was delirious several times.  She believed she could hear someone, and was very frightened.  She drank loads of water, and alternated paracetemol and ibuprofen through the night. 

Tonight, her fever is under 38 degrees and much more normal.  Her neck remains swollen, and her throat is still sore.  She remains off her food.  I have had to make the decision that we cannot go to London.  My friend Edwina, and daughter Mary, is going to come and visit us here, which is great news. 

An old friend of mine, Dave H came over to visit.  We had a good chat, until I started to keel over with tiredness. 

Letter from Doctors' surgery
I have received a letter from my GP, Dr Black.  I am upset by it, but should not be surprised by its contents.  The letter gives the appearance that my GP behaved perfectly well.  I need to digest it before deciding what to do next.  I will share more once I get my head around it.

Got to get some sleep
lots of love
Sarah xxx

Penicillin

Katy is poorly this morning.  I have the usual painful discussion with my doctors' surgery (because I do not want to see Dr Black), and in the end accept an appointment tomorrow with a locum.  We discuss whether or not we will go to cinema or not.  I agree to make the decision at 10 am.  Martha and Katy have invited three friends to join us, on cheapy tickets that I downloaded from the internet.  By 10 am, she is looking much better, so I decide to stick to the trip. 

Izzy Jones, Ella and Rosy all head off to the Printworks, on the tram, with Martha and Katy.  We go to see Cloudy with a Chance of Meatballs 2.  I am happy to sleep through most of it!  Katy comes to sit with me saying she doesn't feel well.  She is alright on the way home. Vicky (Ella's mum) helps me look in her throat, and we can see pussy tonsils.  When we are settled, she is showing a temperature of 39+.  Fortunately, my friend Louise has come to catch up (she is Martha's guardian), and she takes us to a NHS drop in centre, in Boots, in town.  Katy is diagnosed with tonsillitis and given penicillin.  Martha finishes her second course of antibiotics today, and Katy starts a new one.  I am exhausted!

My other news is that I have contacted my doctors' surgery, by email, to ask for my travel insurance form.  They have had it for a month, which I think is far too slow.  I receive an email from someone with poor punctuation and grammar ( eg she wrote "i" a number of times, rather than "I"; her sentence structure was illogical too).  I forward it to the Primary Care Manager, who replies to say that the form is being completed.  Basically, I am losing my temper about all of this.  When I get chance, next week, I will move to Chorlton Medical Practice. 

Bed time for me!
lots of love
Sarah xxx

Pyjama Day

We have no plans for today.  We spend most of the day dressed in our pyjamas and don't do anything of any note at all.

In the afternoon, Martha goes to Anna's (Sasha's mum) for a short knitting lesson.  She has learned how to cast on, today.  She has updated her powerpoint presentation.  She walks home from Anna's on her own.

Katy was not well, and we decided she should stay at home with biscuits, a drink and a good dose of ibuprofen.  She has a fever. 

We have fish fingers and mummy chips for tea.

And now we are all back in bed.

Enjoy tomorrow
loads of love
Sarah xxx

Quiet day

Forgotten extra hour
At the beginning of the day, I am totally confused by the fact that the wrong programme is on the TV for the time.  I am trying to find Andrew Marr and the TV is showing MOTD.  It takes a while for me to remember that it is clock changing day.  Katy is happily watching Match of the Day.

Piano Lesson
Martha and Katy have their piano lesson this morning.  They are both sounding very confident on the piano.  We have a cheap and cheerful lunch - cheese and ham toasties.  I have aubergine pasta, made by Gee, yesterday.  Beautiful flavours.

I head up to bed, and I am delighted that Martha and Katy have learned to stay quiet while I rest.  Katy wakes me at the right time, which I am grateful for.

Homework
Revived, I turn off the TV and the computer games, and we tackle homework.  I am very short tempered, and have to calm down a bit.  Martha spent the whole afternoon on Chorlton Challenge - writing her news journal, and preparing a powerpoint presentation about how to knit.  She also has a fundraising event to plan and cost out - for Children in Need; she has a book review to write, plus numeracy, spellings, researching words with given suffixes, and multiplication tables.  I am worn out already!  Katy spent the afternoon making a leaflet about The River Nile.  She has done a good job of this.  Her next task is to practice spellings. 

Magazine Group
Katy has been given a place on the school magazine group.  She wrote an application in the style of a newsletter, and is delighted to get onto the group.

Katy goes paintballing
and Martha and I have a fish dish of Gee's.  Delightful, thank you.

Have a good week :)
love
Sarah xxx

At the Halloween Party - Gee and Sarah

Helen has made it to Everest Base Camp!

Well done Helen!  We are all sooooo proud of you :) :)   Have a good journey down again.

Halloween Part 2 - some photos

 

http://www.youtube.com/watch?v=d-9RKbiSVDY&feature=youtu.be

Video of girls all (spontaneously) singing "Eye of the Tiger", after the thunderstorm.

 

 

Chris - party host

Gee - party host

 

Apple Bobbing

 

 

 

 

 

Polo mints in flour (the favourite game of the party)

 

 

 

 

 

 

 

Improvisation

Improvisation
You may know that Dave's brother, Paul, performs in improvisation performances.  The events are a bit like "Whose Line Is It Anyway?".  Our day is centred around going to see Paul perform at Sale Waterside Arts Centre.

Breakfast is gert lush
We have Izzy Jones on a sleep over.  Chris and Gee return to us at 9am, and Gee cooks us all the most amazing cooked breakfast.  I had eggs baked with smoked haddock and spinach.  The girls all had a traditional cooked breakfast.  Gee is an excellent cook.  He is also cooking me healthy food to keep in the freezer - fantastic :)

I sleep
I have to go back to bed.  I enjoyed the party, the day before, but I am now very tired.  While I sleep, Martine picks up Izzy and Joan arrives (Dave's mum).  Chris is playing games with Martha and Katy, and we all end up joining in with Guesstures (this is like the game Charades). 

Theatre trip
We get a taxi to the theatre (for 4pm showing), and we enjoy the show.  Paul is very talented.  His best bit was providing "sign language" to a TV programme about a hedgehog training to ride a unicycle.  We all have a great laugh!  I have a couple of glasses of wine, too!

Joan was hoping to come home with us for a Gee evening meal, while Paul was going to perform in the final, at 7 pm.  Unfortunately, Paul decided to go home, so Joan could not come and join us.  We were all disappointed.  We will do it another time!  We took this picture to say "we are missing you!".

Amazing Dinner
We have a good evening together.  Martha and Katy watch Strictly, while we eat a delicious meal.  Thank you Gee and Chris.

An extra hour
I have woken the next morning, totally confused by my clocks, and I have now realised that the clocks have gone back an hour.  I am glad I didn't have an appointment anywhere, because I would have got there an hour early!!

Have a good extra hour
lots of love
Sarah x

Halloween day part 1

Halloween Dress Up
Martha and Katy excitedly get ready for Halloween Dress Up day at school.  Here are a couple of snaps of them.

Rosy, Ella and Katy looking pretty gruesome.

Martha having a dance in Wake up Shake Up

 

Wellies next time!

I head out for my meadow walk.  It is very wet.  I must remember to wear my wellies next time I head out after a rain storm.  I spend lots of time negotiating path width puddles.

 

Rest and sleep

At home I am focused on resting, to prepare myself for Halloween Party.  Martine bobs round to collect a few things, and we have a cuppa.   I make pumpkin soup and go to bed.  I am woken by my alarm at 3pm, so head off to pick up the party girls from school.  I will put photos of the party on tomorrow.  They are spread over my camera, my phone and Katy's IPOD touch.  We all had a good time.

 

Hello Chris and Gee :)

My friends Chris and Gee have come to stay for the weekend.  They were brilliant party hosts, thank you!

 

 

Have a good weekend

lots of love

Sarah xxx

Looking forward to half term :)

Morning shopping
Martine kindly took me to Aldi this morning, so that I could do a good shop.  We had a good morning together, ending on a long cuppa.

I then get to sleep - I am really struggling to wake up.  I want to stay in bed, but I am having to make myself get up.  I have a puffy eye, and I feel like I am moving through soup.  Everything is a harder effort than it is usually.

Halloween dress up day
I make bolognaise sauce for tea.  I then head up to the fabric shop to buy elastic for Martha's Halloween mask.  It is Halloween dress up day at school tomorrow.  Martha and Katy are very excited about it.

My non-walk
My plan was to walk to Unicorn to buy some washing powder, and to continue to school, to collect Martha from comedy club.  Katy was at a football tournament.  She is playing in goal again, because she did so well, last week. 

I bumped into two of my neighbours - Pete from across the road, who is recovering from a broken rib after an accident on the tram.  Then I met my new neighbour, Jenny.  I have agreed that we will cat sit from Saturday to Thursday.  Martha and Katy will be delighted, when I tell them.  I am going to have to bare the burden of requests for us to get a pet cat: the answer will be NO!  By now, I have used up most of my walking time, so I walk down Beech Road towards the school.  Here, I meet another neighbour, Paul, and we have a chat too.  I get to school in time to leave half term biscuits in the staff room, and collect Martha on time.

Martha and Izzy on good form
Martha asks me to invite her friend Izzy round tomorrow night.  This is great news, because they had both fallen out, and I am delighted that they have recovered their friendship. 

Martine drops round to return Martha's pyjamas, and Izzy and Martha still look a little awkward.  It does not take long for them to get back to their usual giggling selves.  I am so relieved for them both.

Chorlton High School pals
Nafeesa and Laura, friends from Chorlton High come round for a catch up.  It is great to see them.  It sounds like all is going well in school.  They then left for teeth whitening!  Ha ha.

Football tournament
Katy comes home from football tournament.  The Chorlton CE team remains unbeaten.  They drew two and won three matches, I think.  Katy is very happy with her performance in goal.  She is very balanced about each goal. 

Bed for me now
Have a good Friday!
lots of love
Sarah xxx

Forgot to take Steroid yesterday ...

Steroid
This is very easy to do, when you are celebrating not having to take loads of drugs to a timetable.  I completely forgot to take my steroid yesterday, so my steroid low is probably even lower!

I have had a lethargic day.  My plans had been to go shopping with Martine.  However, I forgot to take my phone to school, and only discovered on my return, that she couldn't go.  The rain was absolutely pouring down, so I did not go out and take my walk.  I struggled to stay awake, but made myself wait until late morning to go to sleep.

I made some soup for a very late lunch, and got changed. 

Performance parts
Martha's part in Charlie and the Chocolate Factory, is Grandad Joe - Charlie's Grandad.  She is delighted with this part.  She has started trying to walk like an old man...

Katy has a good part in her class assembly, too.  She is Carter, the architect who discovers Tutankhamen's tomb.  We have ordered her a top hat.

Parents' evening
Parents' evening went very well. Dave joined us. No surprise, that both Martha and Katy are both well behaved and working hard. 

Tea at Croma
Margi (sister in law) and Grace (niece) came over for tea; we went to Croma after parents' evening.
We had a good evening, lots of good conversation and some silly fun (like the cup song!).

lots of love
Sarah xxx

Still low

I am not feeling well at all.  I know it will pass, but it is still here with me.  I feel lethargic, tired, my eye is swollen,  I also have abdominal cramping.  I know it is my steroid low, and that I have to ride this out.  It won't be long before I start feeling better again...

I went for my walk in the pouring rain, and had my appointment with my Macmillan nurse, which was good.

Martha was sent home from school.  I was asleep with my phone switched off, so I did not get the calls or texts until I awoke.  The first I read was from Dave, asking if I had seen the messages, to which I replied "no".  I then found the messages, and went straight to the school.  She had been waiting a couple of hours.

The good thing is, that I called the doctors and was able to get an emergency appointment.  Martha has an ear infection, and another course of antibiotics.  I don't know if she will go to school tomorrow; I will make that decision in the morning.

Around all of this was drama club.  I picked up Anya from school thinking that Anna could pick her up on the way, but it turned out that Sasha isn't well either.  In the end (after a lot of texting) Anya's Dad picked her up from the doctors' surgery.  Katy still went swimming as normal with Ann-Marie.

I made an easy meal for their tea.

Bed time now.
Have a good day
love
Sarah xxxx

chemo good :), steroid low:(

Steroid low
I struggled to get up this morning, and we barely left on time for school.  On the way to school, I bumped into my hairdresser, and realised that I did not have my scarf.  I return home for my scarf, and bump into Sarah McCall, where I fall into tears.  This has been the feature of my day.  Later, on my walk (in the pouring rain) I bump into Claire (Charlie's mum) and I burst into tears again.  I am crying on and off all day, for no apparent reason.  I recognise how I feel, as part of my steroid withdrawal.  The good thing is that I know that this will pass.  In a couple of days, my body will adjust and start producing the correct amount of steroids. 

Chemotherapy goes well
I manage my chemo drugs well.  I want to go to sleep, but stay awake long enough to take my chemo drugs, so that when I wake, I can eat my lunch.  I have a long sleep, and wash up while my lunch cooked.   Trying to feel better, I run a bath.  It doesn't help much, but it is always good to feel clean and fragrant!

Hospital appointment - Salford Royal
Dave takes me to the appointment.  I tell him that I have not been well today, and he says that he had already noticed. 

Before I went to France, a friend of Dave's taught Martha and Katy (and me) French.  At outpatients we are served by his mum.  My appointment was exactly on time - great news.

At the appointment we discuss the problem that I have with my jaw - that I cannot open it properly, and that it is painful.  I now know that this is a very common problem after the surgery.  When the operate within the skull, they cut the tendon (?) above the mandible, and many patients suffer with jaw pain after the operation.  It can clear up within a few weeks, or take much longer.  I have been assured that it will clear up in its own time, so I do not need to worry about it. 

Back Home
Katy is at Charlie's for tea and to go to cubs, so I have an evening with Martha, on her own.  She makes really good use of her time.  She finished knitting the second side of her bag, and learns to cast off.  After Wolfblood, we retire to the kitchen where she starts catching up on her news journal.  She is really optimistic that she will finish this piece of work before the end of this week.  I am relieved!  After The Simpsons, and a little of Come Dine With Me (whilst Martha is eating chocolate cake), she retires to bed and finishes Kenzuke's Kingdom.  What a productive evening! 

Katy comes home and we read a chapter of her book Sky Hawke, and have a good chat in bed.

Bed for me now.  I am expecting a similar day tomorrow, and then to see some improvement.  My Macmillan nurse comes tomorrow, which is good timing for me.

Have a good day tomorrow :)
love
Sarah xxxxxx

chemo day 4 - still in good shape :)

Pancakes
I have an awake night with Martha, who has diarrhoea in the night. I wake up and it is light (with Martha next to me).  I try to go back to sleep, but have to get up.  Katy joins me, and we make pancakes with strawberries and cream.  The soft fruit sweet flavour of the strawberries was delicious.  Martha joins us and enjoys the pancakes too.  Katy has finished her homework - she has copied a skeleton from the internet, as a skeletal Egyptian tomb raider, I think.  Martha still has loads of homework to complete. 

We put a film on the TV, and I have to go back to bed.  I have managed my tablets well, and take Ondanstron when I get in bed, and take chemo tablets when I awake.  Katy wakes me to help her write an application to join the school magazine group.  This is the topic for Martha's homework, so we end up doing it all together.  Hooray! One topic is completed. 

Longford Park
I make ham and cheese toasties for lunch, on the understanding that I don't start cooking until both girls are dressed for an outing to the park.  I have a spinach and avocado salad.  We go to Longford Park - Martha and Katy are on their skates; I am happy to be walking. 

 

Martha climber

They do have shoes with them as well, and they spend a lot of time climbing trees.  Martha climbed down a piece of climbing wall, that I did not think she would be able to do.  She is quite an impressive climber!  There were overhangs that she had to negotiate, and I was underneath her wondering what I would do if she fell off!  I would love to be able to take her to a climbing club, but this is simply not possible without a car.

 

More homework

Back at home, Martha starts to tackle her news journal.  Katy is happily entertaining herself learning the words to Les Miserables songs.  Martha is very disgruntled to be behind with her journal.  We managed a little catching up, but she has a long way to go.

 

Swimming

Dave comes to take the girls swimming.  Martha is feeling poorly again, and I agree to go with her.  From swimming, I check both girls for nits.  Martha is with me, in my bed now.

 

Have a good week :)

lots of love

Sarah xxx



Chemo day 3 - good again :)

Morning activity
Morning activity has been creating Halloween costumes for a dress up day at school on Friday.  Martha is going to be the Devil's wife (I think).  Katy will be a dead school boy.

We also dug out our Halloween decorations, which we will put up next week.

Chemotherapy
I struggled to stick to my times today.  It is easier to do it properly while Martha and Katy are at school!  I ended up starving hungry, waiting to eat my lunch that was late, because I had forgotten to take a tablet.  Martha and Katy ate properly at the correct time!

I feel OK. I do not feel ill, just tired.

Afternoon trip to Chorlton
We go to Quality Save for a few Halloween bits, and then to the knitting shop.  What a fantastic shop this is - in Chorlton Precinct - it sells everything for sewing, knitting, stamping, sticking ...  We buy wool and needles for Katy to make a purse, and for me to make a woolly hat.  Back at home, we then spend the afternoon knitting!  Katy has learned to purl confidently.  Martha is systematically creating her second side to her bag.

Hairy biker Dave - tikka misalla
I continue to use my Hairy biker cook book, and create a delicious tikka misalla.  Martha helped me cook, and Martha and Katy both loved it :)  It was very healthy and low fat.

Homework - please save me!!!
I am finding homework an incredible burden.  It is taking forever...  I would not let Martha or Katy watch Strictly Come Dancing tonight, until another piece of homework had been completed.  I was very short tempered and irritable.  Partly because I was tired, I know.  We watched most of Strictly in the end.  Come on Hairy Biker Dave!

Bedtime now
Good night - gotta get some sleep :)
Sarah xxxxx

Chemo day 2 - still good :)

Catch up with headteacher
I have taken my new sick note to my school head teacher.  It is for 3 months.  When I am sleeping less in the day, I am hoping that I will be able to pick up some work for school, but only when I am ready.  I have offered to help with making costumes for Charlie and the Chocolate Factory - this is something that I can do at home when I have "pottering" time.  I enjoyed our chat.

Walk through the meadows
I changed my route today.  The acorns have all fallen from the oak trees.  The red berries were bright.  The field next to the football club has been cleared and flattened;  I do not know what the plans are.  I tried to find out when the bonfire party takes place at the football club.  I really hope it is on the 2nd November, and not the 9th, because we are in London on 9th for Charlie and the Chocolate Factory. 

Chemotherapy
I have taken all my tablets at the correct time today.  I have not felt nauseous at all, and outside of sleeping, I have felt quite well.  I did have a little bit of dizziness this morning, but it passed quickly.

My sleep is getting later
I am not sleeping until later in the afternoon - 1.30 ish until 3 ish.   I don't know if this represents any change, or if it because I am so focused on taking my tablets in the correct order during the morning.  However, I have noticed a change.  Dr McBain said that the tiredness will start to pass within the next couple of weeks.  It is a side effect of the radio therapy, which usually clears after six weeks.  My waking at night for the loo will hopefully pass when I stop taking the steroids.  I have some time to go with this (at least 6 weeks).  I am still celebrating my whole night's sleep from two nights ago :)

Knitting
Martha and Katy have continued knitting.  Katy has finished the knitting part of her phone cover.  We have to tidy up all the connections between the colours, and sew it up tomorrow.  Martha has finished one side of the bag that she is making.  I cast off for her.  Next, she makes the opposite side - repeating exactly what she has knitted already.

I am going to knit a hat.  How things have changed with you tube!  I learned today how to create stitches from a you tube video.  My hat pattern is free - I have printed it off - and there is a video to show me how to knit it.  It is very different from when I was knitting in my early twenties.

Coronation Street
As you know, I don't watch much TV and I am not up to date with the soaps.  We watched Coronation Street tonight (whilst knitting) and there is a big cancer theme in Hayley's story line.  Katy was talking to me about my cancer, and saying that my cancer was different because it was in my brain.  Very tricky!  I can't remember what I said at all. 

Have a good weekend
loads of love
Sarah xxxx

First day of chemo - good

So far so good ...

Full night's sleep
For the first time since my diagnosis, I slept through the whole night.  I woke up at 6.45 am - fantastic!

Morning walk

Martha and Katy are both knitting before we leave for school.  They are both really enjoying it.  After school drop off, I head off for a walk down the meadows, with Mike - one of the dads.  The sun is shining brightly, and we can see the mist floating up from the nettles along the brook.  I am not sure you can get the experience from a still photograph.  The mist was rising up in little clouds all along the river bank.

Shopping

I then head to the shops to collect groceries.  I have bought a Hairy Biker Dave cook book in the book club at school - it was £5, and full of recipes that are suitable for my diet.  Katy chose a main course and a pudding, so I stocked up on the ingredients and cooked the meal with her at tea time.  We had enchiladas followed by apple and raspberry crumble (with cornflakes in the crumble).  Martha will choose our next cook book meal, next week.

 

Chemotherapy

I have followed my schedule.  I have been very careful to eat the correct balance of fresh food today, to help me avoid getting "bunged up" by anti-sickness tablets.  I have only taken one anti-sickness tablet too, hoping that this is all I will need.  I will take more if I start to get nauseous.  I have had no side effects so far.    :)

 

 

After lunch, I sleep until 3pm. 

 

Football Tournament

I then get picked up to go to watch Katy play football.  Her friend Rosy is not there because she is poorly, so Katy became the goalie.  It is a painful experience watching your daughter play football.  Every time she made a save, I thought I was going to have a heart attack!  She did very well.  They won 2-0, 1-0 and drew 1-1 (to a team with an extra player - I was told this on the way home.  How I wish that I had noticed - I would have gone and told the referee.  I can't help but be totally competitive on a sports pitch; I would not have been able to let this go.)  Here is Katy in goal.

 

 

At home, Martha and Katy start knitting again ...

 

 

To conclude - day 1 of chemo has passed without any consequences so far.

 

 

Have a good Friday :)

 

lots of love

Sarah xxx







The rest of my day

Knitting
Martha is completing a Chorlton Challenge.  To gain the award, Martha has to:

• keep a journal of news for one month
• learn two new skills
• make a presentation
• other tasks linked to knowledge of the world

Her first "new skill" is to learn to knit.  Katy is joining in too.  We went to Anna's tonight, for a knitting lesson.  Both Martha and Katy are very proud of their progress.

Katy is making a cover for her phone

 

Martha is making a bag

 

Sasha is learning to knit cable stitch.  I wish I had taken her photo too.  Maybe next time ...

 

Martha's audition
Martha completed her audition.  She doesn't think she did very well.  Uncomfortable with her props in front of her class, she only took the walking stick.  Without her hat, she forgot some of her dance; even the key moves, it seems.  She wants to know what part she will get.  Her preference remains Willy Wonka or Verucca Salt.  In the end, she will be happy with any key role. 

She told me Sasha's performance was really good and that she would make a good Willy Wonka.  I said,  "that would be fantastic", and she scowled at me.  I had to add, "if it isn't you, Martha".

Bev's birthday

Here is Bev in her new cat cardi.  Not to my taste at all, but when I saw it, I had to buy it for her.  It looks good!  Bev is a massive cat lover.  Her cats are black and white too.

Helen goes to Everest tomorrow
Enjoy every moment of your experience.  I can't wait to hear about it when you are home.

Have a good week
love
Sarah xxx

Chemotherapy 2

My 9.30 am appointment with Dr McBain lasted until 1 pm.  Dave took me to the appointment.  It took until 10.45 to see Dr McBain.

This is what I learned:

• I take 250 mcg Temozolomide every day for 5 days.  This is chemotherapy, and double my previous dose.
• My next appointment is 13th November.
• I then repeat the 5 day chemotherapy.
• This pattern continues for 6 months.

I also take:

• Ondansatron twice a day - anti sickness drugs, with
• Metoclopramide as a back up anti-sickness drug

In the morning, I take:

• Omeprazole - stomach protector
• Dexamethasone - steroid (0.5 mcg)

My drug and eating regime will be like this for five days:
Before breakfast:                            Omeprazole
Breakfast
After breakfast:                               Dexamethasone
                                                        Ondansatron
Walk
At least one hour before lunch:       Temozolomide
Sleep
Lunch
Potter
Collect Martha and Katy from school
Tea                                
                                                       Ondansatron

Flu Jab - yes, I must have a flu jab in three weeks when I have completed the first phase of chemotherapy.

I also agreed to take part in a research study.  They are trying to find possible causes of brain tumours.  I filled in a questionnaire and gave a blood sample.

Wish me luck over the next five days!

                    

All Ok

Sorry, it is too late to write tonight.  I am feeling well.  I have had a busy night with Martha and Katy.  Martha has her audition tomorrow; Katy has had friends over to play and been to swimming club.  I will write more, tomorrow.
love
Sarah xxx

Questions for Dr McBain

Appointment with Dr Karabatsou  (next week) - my surgeon

• I still have a sore jaw, and cannot open it properly.  Should I go to this appointment to discuss this?
• Will I regain the feeling in my scalp.  It remains numb.

Appointment with Dr McBain

• Steroid reduction:  now on 0.5mcg.  Gain agreement that I manage the reduction in steroids.
• Macmillan Nurse supporting me - Andrew Evanson
• What are expected side effects of chemotherapy programme?
• Running out of steroids and stomach protectors - can I get a prescription at Christies?
• flu jab - can I get one?

Trafford Centre on the bus

 

 

Martha gets up at 6.30 am for a shower and nit check.  We have a nice morning together, a hot chocolate and breakfast.  Katy is the late riser today.

 

John Lewis Fan

We all walk to school together and then I go to get the bus to the Trafford Centre.  In John Lewis, I exchange Katy's shoes.  I also ask for a chain for my blind, and I am given one free-of-charge.  I head home having spent nothing except my bus fare.

 

I mend my blind

I have a sleep.  I wake to fit my chain, and I cannot wait to sleep tonight.  My blind has only half-closed for months.  There is a street light at the end of my cul-de-sac that shines through the gap.  Tonight there will be no gap.  Fantastic!

 

Katy's boots arrive

Katy's football boots arrive.  She ordered these on line, using her trumpet money.  She has not yet got a place in the trumpet group, sadly.  Here she is, very happy with her boots.  She is excited to play football in the tournament, this Thursday.  I am hoping to go and watch, if I can get a lift there.

 



 

 

Martha has been working hard tonight on her news journal.

Chemotherapy starts again on Wednesday
I am building up to my visit to see my consultant.  I start chemotherapy on Wednesday.  Let's hope that the side effects are minimal.  I will do another page on questions to ask at this session.

Have a good week
loads of love
Sarah xxxx

Quiet Sunday

Not surprisingly, I have been tired today.  My day has been a simple blend of cooking meals, doing the washing, sleeping and nit checking.  It peaks in the evening with Katy getting timed in a swimming club gala.  Martha was not well enough to join in.

Steroids
I feel OK.  I think I am through the dip that comes with reducing my steroid dose.  I am pleased about this, because it shows me that my body can adjust, and produce the steroids that I need to be able to function properly.  I am going to reduce my steroids again tomorrow, to 0.5 mcg.  We have a trip to London on Halloween, and I do not want to be in a dip at that stage; I want to feel good for the journey and our activities.  My plan is to drop to 0.5 mcg tomorrow.  I go for my chemotherapy appointment on Wednesday.  I will discuss this drop with my consultant at this appointment, and if she thinks it is ok, I will continue on 0.5 mcg; if she doesn't think I should be cutting down right now, then I will increase it again to 0.75 mcg.  I don't know if that makes sense to you, but it does to me :)  I have discussed this with my Macmillan nurse.

Sleeping long
I sleep for a couple of hours today.  I could have stayed asleep for a lot longer, but there is a limit to the amount of time that two girls can stay quiet.  I am woken by Katy printing from my PC.  She has made me a beautiful picture of a rainbow over the sea, with "Mum" written through it. 

Homework
Martha has finished her homework for the weekend (phew).  She has not kept up to date with her news journal.  She is nearly a week behind with this.  She has to keep a news journal for a month.  She continues to have a terrible cough. 

Wishing you all a good week
loads of love
Sarah xxx

No sleep today :)

I have had a busy day today.

Visit to Liverpool
Dave took us over to see his Mum this morning.  We had a good morning together, enjoyed doing a puzzle and had a roast dinner.  Joan seems to be very happy at the moment; her back garden looks amazing. 

Chill Factore
Martha is not well.  She is on antibiotics. She was crying before we left, has dozed in the car, and been tired at Nanna's.  We dropped her off at the Chill Factore on the way back, and she was anxious and crying there.  I had to stay with her to give her the confidence to enjoy the party.  It all worked out well, but took a big chunk out of the day.

At this point, I am feeling like a sleep, but it is not possible.  Dave has gone home, and Katy and I are going to go back to Chorlton on the bus from the Trafford Centre.

Katy gets new shoes (nearly)
In the Trafford Centre, I get Katy's feet measured because she has blisters from her new shoes.  The shop assistant agrees that she has been sold shoes that are too small, and the manager agrees to replace them.  The only problem is that I forgot to take the shoes!  I have another trip to the Trafford Centre to achieve next week, to pick up her new shoes.  It is worth shopping in John Lewis!

Katy buys some slippers in Marks and Spencer, on the way back to the bus.  They really suit her.

Becoming a bus lover...
The bus trip home was fine.  It doesn't take much longer than finding the car and driving home.  I will get to love the bus!

So, now, I feel very tired.  I have a mild tummy ache, which I also had last night.  My headache is very mild.  However, on the whole, I feel very pleased with my day.

Have a good weekend
lots of love
Sarah xxx

Out for the evening :)

Trafford pals come over
My old pals from Trafford head over for an early tea at Yakisoba.  Don joins us, too, which is fab.  He is very funny company.  Belinda was hilarious too, with her baby development app. on her iphone.  Seven month old baby Ciaus is developing well :)

I enjoy the evening, but I am ready for bed by 8 pm!  We have a cuppa tea, and then I get my head down.  I forgot to ask about the Flixton Girls' Alumni Dinner.  We were all based in the school, so I wonder who else has been invited. 

Morning Walk  
I have a longer meadow walk today.  I also take some books to Oxfam, drop ebay parcels at the post office, and I am delighted to buy Martha a walking cane for her Willy Wonka audition costume - in Age Concern.

Sleep and then Katy comes home with Dave.  Martha has gone to the park with year 6 pals, straight from school.  She is breaking into her own independence.  She comes home at agreed time - a good start for me as her mum.

Good night all
love
Sarah xxx

Crunchy leaves

Faster morning walk
A much cooler day today, but still in bright sunshine, I enjoyed my walk around the meadows.  I must change the direction of the walk - I was squinting into bright low sunlight.  If I reverse the route, the sun will be behind me.

Generally, I am feeling much better as each day passes.

Martha gets antibiotics from Dr Sabeti
I have a double appointment with Dr Sabeti. She checks out Martha's cough, and checks it isn't anything more serious.  I don't like Martha or Katy taking antibiotics, but I have to agree to Martha taking them.  She hasn't been able to shake off a horrid loose cough.

New sick note
For me, I am given a three month sick note.  I feel sad about this, but I have to follow advice.  I think I was barking mad to think I would be able to go back to work after October half term.  I am now aiming for a New Year restart.

I asked about my letter to the Primary Care Manager.  Dr Sabeti was surprised that I had not received an acknowledgement letter, but was immediately able to locate and print the letter.  I am content that the letter had been written before I got there.

My other matter is my travel insurance claim.  I am told that the Primary Care Manager will call me about it.

Long sleep

Katy's football tournament is cancelled
Katy and her football team are taken by three teachers to a school on the other side of Manchester.  When they get there, they find out that the tournament has been cancelled.  All the other schools had been advised of this, and Chorlton CE had been forgotten.  A simple mistake has been made, that has affected parents, teachers and children.  Luckily, Katy seems OK about it.

Martha enjoyed comedy club.  At home she has carried on practising for her Charlie and the Chocolate Factory audition.  I have been asked to be Simon Cowell, and give her really tough feedback.  She is quite amazing, but I found her some things to improve.  She has done some of her homework too.  Katy has done some great literacy work tonight, describing an image of a sphinx in a desert.

Have a good day tomorrow
love
Sarah XXX

Charlie and the Chocolate Factory

Willy Wonka
The big news of today is that the year 6 Christmas production will be Charlie and the Chocolate Factory.  Martha is a budding actor, who has already started preparing herself for the audition.  She has to sing "Pure Imagination".  This is the song that Willy Wonka sings as they enter the giant room with the chocolate river, and trees that are made of "candy".  The timing is very tricky.  Her teacher is definitely trying to test their ability to perform.  The auditions are next week, so watch out!  I will be singing the song too...

Faster walk
I made it out for my walk.  The bank of the Mersey is decorated with beautiful purple flowers. 

Macmillan nurse
My Macmillan nurse came, and we had a good talk. He keeps reminding me that it is only 4 months since my diagnosis, and that I have been through a lot of trauma in between then and now.  I am going to stay on 0.75 mcg steroids for another week, and make sure I am settled at this level.  I will then cut it down to 0.5 mcg, all being well.  The signs are good.  I am definitely feeling a lot better today.  My eye remains swollen, but my activity levels are higher than they have been.

I have realised that I cannot go back to work after half term.  I am nowhere near ready to start work.  It seems crazy that I thought I would be able to go back.  I have (finally) got a doctor's appointment, one for me and one for Martha (ongoing loose cough).  Katy's knee is fine now.  I will be collecting another sick note.

Harvest
I went to see the Harvest Service at school.  Year 4 performed the service, and Katy sang in the choir.  Year 4 look so grown up.  Last year, they were so little.  Martha looks really old, now that she is in year 6.  It was an enjoyable school event.

Rehearsals
So, my evening at home has been a bit of pottering, while Martha rehearses; Katy has been doing the computer for her and giving very constructive advice.  Katy also went and found her a Willy Wonka outfit.  When invited, I have watched Martha perform.  She doesn't know all the words confidently yet, but her performance is very powerful.  She has a gift for engaging her audience with looks and moves.  By next week, she will know all the words and will be able to produce a memorable performance.

Thanks also to Diane for Groundhog Day.  We will all watch it together.

Have a good day tomorrow.
lots of love
Sarah xxx

Groundhog day

Groundhog Day
Someone has sent me a copy of Groundhog day.  Thank you very much.  My life at the moment is very like the film.  Every day has a similar pattern.  Drugs, breakfast, breakfast for Martha and Katy, walk to school, go for a walk, have a sit down, go to sleep, go back to school, tea and clubs, homework/reading, bed.  In Groundhog style, maybe I can work my way back to not having cancer.  Ok, I'll settle for a handsome man instead! :)

Walk
I am feeling a lot better today.  Anna and I went for a walk together this morning, and we were both delighted with how we got on.  I was feeling much more physically able.

At home, I have rested and then done a little housework.  I am turning into a housewife!  When you are at home, and unwell, you can use up 30 awake minutes here and there, doing little jobs.  Today, I put a pile of things for the charity shop into my new shopping trolley bag.  My aim is to take this to the charity shop next trip out. 

Sleep
Back to Groundhog day - sleep. 

Pick up girls from school
Pick up three girls from school; Martha is taking her friend Anya to drama club, on a take-a-friend day.  I hear about Martha and Anya's day - they have been teaching all the year groups across the school.  Martha has been teaching numeracy using leaves.  It has been a beautiful day, so perfect for working outside.

I then leave Martha and Anya at home, and take Katy to see asthma nurse.  Katy is doing very well, and knows how to use her inhalers properly.  Katy was given an anti-flu injection, which then lead to her choosing not to go swimming.  She has a sore arm and feels under the weather.  Her knee has recovered, I am very glad to say.  She can't wait to play in the girls football league on Thursday - she is counting down to it.

Books and bed.

Handsome Man?
Groundhog Day:  no handsome man yet.  Maybe tomorrow!

Hope the sun is still shining tomorrow.  I can't believe I have been wearing only a t-shirt outdoors this afternoon.  It was really hot.  I did wonder, was it hot, or did I have a fever?  It was definitely hot.

I am feeling a lot better:)

Enjoy your week
love
Sarah xxx

On the mend, I think

Under the weather
I am still upset about my car.  It represents the changes in my life, at the moment.  I am annoyed that someone has parked outside my house!  Around this, I feel generally "off colour".  I think it is the steroids.  However, I am going to persist at taking 0.75 mcg.  I don't feel too ill to carry on with it.  Hopefully, my body will start to create the steroids that I need to improve my general well being.  The occasional puffiness of my left eye makes me very tearful.   My Macmillan nurse will come back on Wednesday to check how I am getting on. 

I went for a morning walk
My walking style is that I am looking for somewhere to sit down and have a rest.  I have not sat down at all, but my mind is not walking freely.  I am out of breath when my pace is less than a dawdle.  I walked through Longford Park today, to go to Barbakhan (Polish deli) to pick up a loaf of bread and a packed lunch for Martha.  I forgot that she was going on a trip today to see Jackie Kay (a poet) at the Royal Exchange Theatre.  She really liked her lunch - easy to please, with a ham sandwich, chocolate cake and a smoothie. 

Bed for me.  I just get to sleep and my mobile rings with a call from "Look Good Feel Better".  This is a service from Christie Hospital that I have been told to make the most of.  You go to a make up workshop and get sent home with loads of high brand freebies.  I accepted the appointment for tomorrow, put the phone down, and looked at my diary; I realised that there is no way that I could go - Katy has an asthma appointment tomorrow that we have been waiting for since the Sunflower incident at the end of August.  I have had to decline the appointment, and postpone it.  I am told my appointment will be in the New Year.  Let's wait and see.  I hope to be back in work by then.

I switch my phone off and sleep until 2pm. 

I pick Martha up at 3pm and bravely leave Katy for football club.  She is moving normally when she gets home, so I think her knee is now settling well.  I am keeping up the ibuprofen.  Martha and I have a good evening while Katy is at cubs - Martha writes a poem about a canal (three times spelt cannal (ha ha)) - it is really quite moving.  She then catches up with her news journal.  Every day, she is writing news into her journal.  The school guidance is to do this for a whole month, and she is determined to do a piece a day.  I want her to be less thorough ...


My 40s looking scarf
I have never been good at tying scarves!  Here is the 40s look.  A bit better than yesterday!

Have a good day everyone
lots of love
Sarah xxx

Pyjama day

Katy goes to the cinema
Katy gets me out of bed.  She is going to watch Percy Grainger and the Sea Monster, with her friend Lewis H, for his 10th birthday.  She does her homework, while I make breakfast.  Martha gets up with a cold.  She is hot and has big bags under eyes.  I fill both girls with medicine - calpol for Martha and Katy's ongoing dose of ibuprofen for her knee.  Katy's knee is improving.

Martha does her homework
Full of calpol, Martha does her numeracy homework (long multiplication), and spellings homework (finding words with prefix tri, and prefix quad).  She then retires to the sofa and a computer game.

I don't do much at all.  I am still feeling very low.  I have headaches, my eye is puffy, I feel lethargic.

Katy's desk
When Katy comes home, we clear her desk and a shelf in her room.  Katy is a hoarder!  She has a story for every little item.  She knows who gave it to her, or where she used it first.  Her eyes sparkle as she shares her story, and why she has to keep it.  It is painful to see, for her mother.  Her room looks a lot better.  We still have a way to go.

I go to bed for a sleep.  Katy sits on my bed and continues with her homework.  I manage to sleep while she designs a sarcophagus and decorates it with hieroglyphics. 

I wake at swim club time.  Katy swims; Martha chooses to watch.  She has to get dressed to go to the pool.

Smoothie maker explodes
During tea, the smoothie maker explodes.  Katy has just said that she can smell burning, then there is a loud pop and sharp flame.  Katy was really close to it, and fortunately was only shocked, not hurt at all.  Banana milkshakes became strawberry ice cream and banana.

Hairy Biker Dave gets through
Nit checks, Strictly Come Dancing, and Bed.  Hooray!  Hairy Biker Dave gets through :) 

Wishing you all a good week
love
Sarah xxx

My car has gone :(

We all get up late
First out of bed at 8.45 am, I make breakfast for Martha and Katy.  Katy joins me in the kitchen, and finishes her literacy homework.  Martha watches the end of the Johnny Depp Alice in Wonderland film; she is in her bedroom on her futon chair, all cuddled up in a blanket.  She looks really cosy, in her getting-tidier bedroom.  I am going to tidy out her wardrobe, next. 

A scarf arrives in the post.
This is a gift from my sister, Bev.  It comes with instructions on how to tie it 40s style.  As you can see, we couldn't get the hang of it.  I will practice again tomorrow :)  Thanks Bev!

My try ...

Martha's attempt ...

and Katy's solution

 

 

Martha and Katy go conker collecting. 

 

Dave arrives while they are out, and goes to help them.  When they return they think they have 100 hundred conkers.  My estimate is 300.  They spend time counting every conker, and go and get one more to make the final total 350.

Martha is looking conkers!

 



 

Max and my Mum arrive

 

I am swapping cars with Max.  We had agreed that I would sell her Rover, but changed our minds about this, as it will be much easier for the owner to sell the car.  The first problem we had was that my car wouldn't start.  We called the RAC for help, and went to school BBQ for a burger.  Martha and Katy went there on their own, while we called the RAC.  I am not feeling well.  I have been in tears with Max.  At the BBQ, I am trying not to cry, and we don't stay long, to get back for RAC.  Martha and Katy stay and come home later with Lisa and Iona.  A new battery later, and a basic service and Max has a car with pumped tyres, oil and water checked.

We then sort out insurance, so that both cars can go back to Bristol. I have not been organised about this, and Max's insurance on the Rover ended at one thirty in the afternoon.  Amazingly, we find one day car insurance online for £25, so Max drove the Rover home, and my Mum drove home my Zafira.  I am relieved that I don't have to sell the Rover. 

 

I am upset to give up my car.  I am sure this will pass.  The problem is that giving up my car represents a change in my life.  I am not allowed to drive for two years.  This is an adjustment that I am forced to make.  I am very grateful for all the lifts that other families are offering Martha and Katy, so that they can continue to attend their clubs.  I will soon be an expert on the bus and tram system, and we will of course be out and about on our bikes, when I am fit enough.

 

I am upset about other things too.  I just have to relax and live in the moment. 

 

Hair cut

I don't think I have let my mum cut my hair since I was 15.  Today, I asked her to cut off my hair that is really painful when it is moved.  I now have a bit of a monkish look - but I am hoping to sleep better tonight.  I will wear Bev's scarf tomorrow (ha ha).

 

Steroids and paracetemol

I am sluggish, have headaches, my left eye is swelling from time to time.  I remain on 0.75 mcg steroids, but I am taking loads of paracetemol to combat pain.  I am going to stay on 0.75 mcg for another week.  I am not ready to reduce my steroid dose any further right now.

 

Let's have a better day tomorrow

Have a good weekend

Love

Sarah xxxx

 

 

 

 



Even slower day

No walk today - I have a bad headache and go home to get paracetemol.

I fall asleep watching TWS (The Wright Stuff), and wake at 11.30am.  I panic, thinking that I have slept through, and that I have missed my appointment with my Macmillan nurse.  He arrives at this moment, so I am half asleep, no scarf, need a wee and totally unprepared to meet him! 

It is good timing for a visit, because I don't feel well.  We conclude that it is my steroids.  My plan had been to reduce from 0.75 mcg to 0.5 mcg, at the weekend.  It is agreed that I persist with 0.75 mcg until I feel better.  Or, if I do not feel better, that I increase the dose back up to 1mcg.  We talk about lots of things:  Martha and Katy, travel insurance claim, my letter to the doctor's, my fears for the future, his visit to my doctor's surgery, chemotherapy - next phase ...  He decides to come back next week, his main aim is to check how I am getting on with the steroids.

Lunch - I have Tanya's chilliless chilli for lunch.  I add some fresh chilli :)  Thanks loads, I enjoyed it.

In the afternoon, I potter about.  Being home, sick and poorly, is a great way to get spring cleaning done.  I empty Martha's shelves and reorganise all the games.  I syphon off some activities to sell, and some for the charity shop.  She won't miss any of it.  I also find an activity book about dragons, that Katy is really excited by.

Katy's knee
Katy has taken maximum dose of ibuprofen, and is walking more normally on her knee.  I rang the doctors for an appointment on Monday, and was told that the only doctor available was Doctor Black, so (if Katy needs to see the Doctor) I have to ring on Monday to try for Tuesday.   In the end, I am going to have to change surgery, because Katy is missing out on seeing a doctor, because I don't want to see Doctor Black. This is not fair to Katy.

Katy comes home with a merit certificate for her art work, and a level 2 bikeability badge.  She has a great report, and her eyes are bright with pride.  Lovely to see.

Martha walked to the park with friends from her class.  There were about ten of them, a small crowd, all fizzing along Beech Road to the park. 

Gremlins
We finish watching Gremlins.  Martha and Katy love the film.  Gremlins 2 is on order!  We finish off reading and settle down to sleep.

I hope to sleep well tonight.
Have a great weekend
love
Sarah xxx