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