Sunday, 22 June 2014

One year since diagnosis


A year had passed since I was diagnosed.
 
Questions for occupational health:
  • What would they recommend for my return to work?  How many hours/days?
  • How do they "phase" people back into work?
  • What happens if I fall ill?
  • If I go back to work too soon, what are the consequences of this? eg if I continue to need to sleep in the day?
My condition:
  • general stiffness
  • pain at base of spine (painkillers don't help)
  • sleep in the day, and when children sleep
  • ongoing pain around site of operation
  • memory has been affected
  • grade 3 tumour (8cm remains)
  • tumour is stable


Treatment:
  • chemotherapy ended  March 2014
  • next MRI scan (head)   9 July 2014
  • MRI scan (spine)          28 June 2014
  • Last scan (head)           31 March 2014
  • See consultant              16 July 
  • Macmillan nurse           24 June
  • physiotherapy  
  • Salford Royal                 September
My recovery:
  • walking
  • physiotherapy
  • pilates
  • diet
  •          

Wednesday, 2 April 2014

Good News

My consultant tells me that my scan shows no change.  My remaining tumour is not growing.  This is the best news that I could ask for.  Apparently I have a gap in my head, which makes me laugh; there is a gap from where the tumour was removed at the end of June, last year.

The news is:

  • Next scan will take place in July, with feedback a week before I go on holiday.  I think this is good timing.
  • Future scans will be six monthly, and then dropping to annually.
  • I have permission to swim.  I can't wait to get in a pool - I know swimming will be really good for me.
  • My consultant hopes that my stiffness will pass, as I start to recover from the chemotherapy.  I have continued to suffer with pain, when I am sitting down.  It always tickles me that I do not suffer pain when I am walking, but have intense pain when I am sitting down.  
  • She recommends that I see my occupational therapist to discuss my return to work.  I am amazed that she can remember that I saw one before I was diagnosed - very impressive!  Her prediction is it will take me a few months to recover from the last nine months of treatment.  This sounds good to me.  (I don't know if I wrote about my occupational therapist, before now - I met her in May/June last year, and her report stated that she did not think that I was depressed, and recommended that I had an MRI scan.  I was unable to read when the letter came, and Dave read it; it convinced him that he had to campaign to get me a scan - which lead to my diagnosis.)
  • We talked about my memory; I declined any treatment.  Google calendar works well for me, and other electronic gizmos help me.  I have had to change the way I operate, but on the whole it is working.  
That's  it for now.  I am very relieved with the results.  Genuinely I don't worry before the appointment, but now that I have good results, I am delighted!

Thanks for all your help, so far
lots of love
Sarah xxx

Tuesday, 1 April 2014

Spring in Sale Water park

Really sorry - I will have to upload photos tomorrow.  Lap top is on a go slow!
I have extended my morning walk to include Sale Water Park.  Those of you who live here will know that you can cross the River Mersey and emerge (submerge?) into the Water Park.  My route is to walk along the brook to where the brook meets the Mersey, and continue along the Mersey to the tram bridge.  Cross the river here, and then return along the side of Sale Water Park, eventually crossing the Mersey at Jackson's boat.  Return home, any route.  I have taken pictures of Spring today, but cannot upload them onto the BLOG.  I also tried to record the birdsong, but my phone's memory was full.  Another day!


My appointment with my consultant is tomorrow. 


lots of love
Sarah xxx

Monday, 31 March 2014

Back again!

I had an MRI scan today.  I can only share what it is like, not what the results are.  At my appointment with my consultant, on Wednesday, I am hoping to get the results.


What is it like?


Through a small door at the back of a waiting room, I am left in a curtained cubicle to remove any metallic objects.  There is a locker for me to leave all my belongings.  The appointment is early; my half eaten sandwich is left in the locker too.  In the adjacent room, I am asked to sit in what appears to be a comfortable chair, but the design ensures that I feel like I am going to slide down and out of it, forwards, onto the floor.  I always think of Gavin's baby chair and Nigel's hospital chair (both designed at uni), when I am using my legs (that can only just reach the floor) to retain my position.  It is a chair with a high back, and squishy arms:  "Rest your arm there", says my nurse, whose name I have already forgotten.
I am given a canula: this is a needle, inserted into a vein inside my elbow. I look away, the whole time, with my left hand across my eyes, "I always hate this", I tell the nurse.  The canula is sellotaped to my arm, and has a long tube leading to a syringe.  The nurse injects some saline fluid to check that it is working correctly.  I have not looked, and I cannot feel anything.  This is good.
In the waiting room, I wish that I had brought my book with me.  The key to the locker has been taken by the nurse, so I can't go and get it.  Reading the October edition of WOMAN, I learn that leather skirts have been "in fashion" through the winter. 
Into the scanning room.  I lay on a thin bed, and put my head in a cradle.  This is not like the radiotherapy - I do not have a mask.  They place large earphones over my ears, and put a case over my head.  The case has a periscope that allows you to see out of the back of the scanner.  The bed slides into a thin dark tube.  The music blasts my ears: it starts with the LAs, "There she goes", which I like, but all the subsequent tunes were cheesy pop and quite unbearable, especially in succession.  Every now and again, the music is interrupted by something that I know to be the nurse telling me that it will be 5 minutes of the next batch of treatment, except that I cannot hear what I am being told.  Back to the cheesy pop ...
The scan sounds like really loud banging.  Each phase has a different tone, and/or a different rate of pulse.  I feel like I have been put into a tube, and then shaken around for about three hours.  It is actually about twenty minutes.   During the scan, a nurse inserted a dye through the canula; again, I felt nothing.  When I was eventually slipped out of the tube, I am not sure which is worse - the banging and shaking, or the cheesy pop music!
Back to the waiting room, for another magazine.  I can't remember what it was called, but it was full of horrific stories e.g. one was about a woman who discovered that her husband was a serial killer.  I still have the canula in my arm.  After twenty minutes, this was removed in the same clinic and slide-forward chair.  "You are free to go".


Thanks for all your good luck messages. 
Lots of love to you all
Sarah xxx

Thursday, 13 March 2014

"logging out for a few days" - back soon

All going ok.


Key dates:  31 March - MRI scan
                     3 April   - appointment with consultant


Have a good time
lots of love
Sarah xxx

Feeling much better!

Might go for a celebratory cup of cocoa later!


Have a good day
love
Sarah xxx

Wednesday, 12 March 2014

Still sickly, but doing ok.

Hoping it will pass, today.  S xxx

Monday, 10 March 2014

chemo day 5

I made it to school with packed lunches for both Martha and Katy.  Nausea at dawn, and various stages of the day, but I have overcome it.


I received my next scan date - Monday 31st March.


Sleep now
love
Sarah xxx

Sunday, 9 March 2014

chemo day 4

Day 3 was quite a good day.  Day 4 was hard going!


A beautiful sunny day, with some warmth in the air, I took some time to sit in the garden.  Mostly, I slept or helped with homework.


I have had a good vomit today!  It can't be avoided.  Only one more day of pills to go...


love to you
Sarah xxx

Friday, 7 March 2014

chemo day 2

Pouring with rain, this morning, I was nearly deterred from my morning walk.  Based on the prediction of the weatherman, by the end of my walk, it was sunny and blue.  Spring is here.  Daffodils cluster on the river bank, the buds are reaching into small leaves, the stinging nettles have started growing.  My crab apple tree has a thin coat of green.


My Macmillan nurse was ill, so I was happy to go straight back to bed.  Two hours pass, I have small lunch, and go back to bed again!  I struggled to get to school on time, to pick up Katy.  Martha has gone on a sleepover tonight.


Some bad stomach cramps have made me feel poorly.  They have occurred on and off, all day. 


Back to sleep again!
lots of love
Sarah xxx



Thursday, 6 March 2014

Chemo day 1

I continue to feel very weary.  I got up at 6am for ondansetron (anti-sickness), and at 7am for chemotherapy pills. 


At 9am, an electrician was due to come and give me a quote for the shower fuse, and he came early; he arrived in the middle of my egg Florentine, which left me later with an unbroken egg and a cold breakfast.  The good news is that he will do his best to investigate the problem, and (hopefully) fix it.


I go straight back to bed and sleep most of the morning.  I go for a medium length walk, and sleep in front TV in the afternoon.


Evening ondansetron was remembered late, so I now have to wait a bit before taking metoclopramide (anti-sickness) and senna (laxative).


Day one out of five is nearly over.  I want it to pass quickly!


lots of love
Sarah xxx



Wednesday, 5 March 2014

Hospital appointment

With a lift to the hospital, I was there close to 9am.  Blood taken by a nurse, I sit on the "green chairs" to await my appointment.  The usual pattern of the morning repeats itself: have appointment with doctor, wait on the green chairs for confirmation that my blood tests are ok, go to pharmacy to "collect" prescription, be told to return in 45 mins to an hour.  I do not leave the hospital until after 12.15 pm.


My news:
  • scan in a few weeks, and then in three months;
  • return in a month for check up and scan results;
  • advised to go to complementary therapy on an evening once a week, for massage or acupuncture;
  • I must not start running, until my stiffness and pain has reduced.  Pilates, cycling and swimming are good activities (low impact).  Swimming in a few weeks, once my low immunity phase has passed.
I am very tired.  I slept in the afternoon.  Parents' evening tonight - all good. 


love to you
Sarah xxx


Tuesday, 4 March 2014

Chemo starts tomorrow

Sorry for the long delay - I had no phone and no lap top.  My phone is now fully functioning, and I am still getting used to my computer.


I wrote my BLOG last night, and lost it!  Tomorrow brings my appointment with consultant, and my giant prescription of pills.  I start taking them on Thursday.  My mum will arrive on Friday and if I follow my usual chemo pattern, I will decline into overwhelming nausea from that point onwards.  This is my sixth month of chemo, out of six.  I can't wait for it to be behind me! 


My consultant will tell me tomorrow, what will happen next.  My questions are:
  • acupuncture trial - can I go on waiting list?
  • pay in  Martha's fundraising money,
  • ask for results of last blood test,
  • what happens next?
Gotta go to bed
Love you all
Sarah xxx

Friday, 21 February 2014

Temporary phone and no laptop

Hi there, I am using Martha's lap top, which I am starting to get the hang of.  I can't get the hang of my temporary mobile phone.  I have gone from key board to predictive texting, and it takes me too long to write a text.  I also do not have any phone numbers.  Come back old phone!  If you receive a text from me, do not be offended if it is very brief!

Healthwise, I remain tired and in need of regular sleep.  Ed and Mary are visiting, and we took the girls to the "elephant pool" (Manchester Aquatics Centre).  It is my week of low immunity, so I chose not to wait in the pool for them, and Ed and I went to eat.  I became so tired, that I had to go and sleep in Ed's car, in the car park.

Wishing you a good week.  I head to Bristol, tomorrow, for my Mum's 70th.

lots of love
Sarah xxx

Sunday, 16 February 2014

I.T. crash! No phone and no lap top!

On the mend :)  I have shaken off the nausea and started eating properly again.  Sleep remains a priority.  My mum took me to Aldi (big day out!).

My phone (which was already seriously "under the weather"), has gone barking mad!  It jumps about like someone else is using it.  The screen changes from the welcome page, to someone's address, to music download etc.  It is scarily fast, and scary to see.  For a few moments this morning, I managed to copy all my data onto my lap top.   Phew!

Short lived relief!  My laptop has now conked out.  As I am writing this, I am tensely wondering if my Blackberry has infected my computer.  I could not access the internet, and my screen said it was a problem with Norton.  Martha's laptop takes me to Norton help line number.  An hour long call later (which was free), I discover that the phone operator (in India) is not from Norton, but ESURE, and after a thorough diagnosis of my computer, I have loads of things wrong with it.  Earlier in our friendly conversation (which included me sharing that I had a brain tumour), I thought that they were Norton and they were going to fix it; now, I have been given a large bill by ESURE.  I declined of course.  Mildy satisfied to have a printed diagnosis of computer ailments, I am also really annoyed that I have wasted my time.  My computer is currently dead.  I couldn't even open microsoft word.  I do know someone who can help me.

I am dependent on Martha's computer, for now.  Do not text me or use my mobile number.  Use my email address and home phone number.  Thanks loads.

Time for bed
Good night and have a good week ahead
love you all
Sarah xxx

Saturday, 15 February 2014

End of chemo

Hi there,
I am still feeling poorly, but looking forward to the nausea lifting.  I haven't done anything except sleep, and see Martha and Katy leave to stay with family.  I took the last dose of chemo yesterday, but its effect always lingers.

Hoping everything will be good tomorrow (for you and me).
Bonne Nuit
Sarah xxx

Friday, 14 February 2014

chemo day 4

From Louise's 40th :)


 
These are fallen trees

These are fallen trees after the storm.  I have lost tiles from the roof of my house, too.  The trees are on my (currently shorter) meadow walk.
 


I have started being sick again.  Being optimistic, I was hoping to avoid it, but the nausea continues to overwhelm me.

Have a good day :)
lots of love
Sarah xxx

Tuesday, 11 February 2014

Shirley Temple

Shirley Temple has died, aged 85.

Feeling OK.  I have spent most of the day asleep, but no real nausea yet.  Loads of anti-nausea pills instead!!!

Have a good week
lots of love
Sarah xxx

Monday, 10 February 2014

Chemo day 1

Hi there,
I had a fantastic weekend at Louise's 40th.  I couldn't stay up late - first night there and I stayed up until 10 pm, and I didn't get up until 2.30 pm the next day.  Or maybe it was just getting a night away from the girls!!!
I have started chemotherapy again today.  Fifth session out of six, so the end of the treatment is in sight.  I feel ok.
lots of love
Have a good week
love
Sarah xxx

Thursday, 6 February 2014

All ok :)

Hi there,
Windows fixed - no more breeze.   Loads of phone calls about chemo, because this is when I would have been taking it.  Instead, I am packing for my weekend in Wales.   I am back to sleeping in the day again, but it is diminishing with time.

I am unlikely to BLOG for the next few days.

Chemo starts on Monday.  The fifth out of six - nearly there!

Have a good weekend.
Lots of love
Sarah xxx

Wednesday, 5 February 2014

Chemo all ok

Good trip to hospital today.  My bag of drugs were ready when I went to collect them, so made it out by 11.30 am.  Beautiful weather on the way in; pouring down on the way home.  I won't take them until Monday.  I will be in Wales for the weekend, celebrating Louise's 40th. 

Have a good day tomorrow
lots of love
Sarah xxx

Monday, 3 February 2014

shower and shoes

Another good walk this morning.  The snowdrops are peeking out.  This is the first one I have seen so far.


I phoned British Gas, and I have arranged for my meters to be changed to smart meters.  Given that my electrical supply to the shower is flammable, this seems like a practical way forwards.  I have nearly finished clearing the shelves that block the gas meter, in the cellar.  Installation is booked for the last Friday of half term.

I have also been able to further reduce my payments - I was in credit.

Katy and I went to the podiatrist.  We travelled on the bus, and returned home with new orthotics.  Katy's are higher density.  She has hypermobility, and the doctor recommended that maybe I should try her in boots.  I will look, on line, to search for any that also look like school shoes.  I do not want to send her to school in walking boots, or basketball boots - I want her to wear the proper school uniform.

This evening, Katy went to cubs, and returned home as a seconder.  She is very proud.  I will sew her badge on tomorrow.

Martha has completed her homework (phew!).

There is something missing from my day - can you spot it?

lots of love
Sarah xxx




Sunday, 2 February 2014

All Ok:)

I made a good roast dinner today for the three of us and Katy's friend Ella.  Katy and Ella played well together - they made cakes (on their own), went roller blading in the park, (and snuck to the shop for dangerous blue stretchy sweets covered in killer crystals).

Martha - one homework left to complete.

Both girls are swimming well.  

I haven't had a proper sleep - only a twenty minute "lie down".  I am going to struggle to stay up beyond 9 pm.

Have a good week ahead
lots of love
Sarah xxx

Saturday, 1 February 2014

Millionaire Shortbread

For Helen - the Millionaire shortbread, TAKE 2!



Anna's recipe.  Gert Lush!

I had the most beautiful walk this morning.  Clear blue skies, I was blinded by sun in my eyes from the sky and the river Mersey.  The frost had thawed.

Later in the day the weather was cold and wet - a terrible contrast.  My thoughts that we may go to the park were banished!

Martha has stuck to her homework timetable, written her thank you cards, and written, rehearsed and performed a comedy sketch.  Katy has been rehearsing her "In the Jungle, the quiet jungle, the lion sleeps tonight" guitar duet with Polly.  Chorlton's got Talent competition takes place on Tuesday, and both girls are excited about this.

Have a good weekend
lots of love
Sarah xxx


All OK :)

I went to the cinema today to see August: Osage County.  Meryl Streep has had an Oscar nomination for it.  It is about family relationships.  The funny part of our trip was my friend got really concerned that she had taken me to see the wrong film.  She nudged me a couple of times to say she felt really uncomfortable and if I wanted to leave, we could.  It turned out that she was worried because Meryl Streep's character had cancer.  It really wasn't something that was in my mind, and I wasn't bothered by it afterwards, either!

My window man didn't turn up today either.  My window cleaner came about 5.30 pm (for payment) and said "windows" and I momentarily thought he had come to mend my windows, and was incredibly late!  Not so, but, we both had a laugh about it.  Apparently, my window mechanic was stuck at a job in Warrington.  This has "happened" two days on the run.

My shower fuse popped yesterday.  I (luckily) had decided not to wash my hair, but I was covered from neck to toe in bubbles, and had to wash standing up in the bath.  When I removed the fuse (in an old victorian fuse box), there was evidence of burning!  I have got to call an electrician to come and help me with this.  We won't be using the shower until this is mended.

My friends from Trafford came over in the evening.  We went to Yaki Soba and had a lovely meal together.  Thanks girls!  We also swapped secret santa presents, which was fun too.

I have a morning to myself, which is nice.  I am going to cook mushrooms hollandaise (because I don't have any Spinach), and go for a walk in the sun.  We have a beautiful frosty morning.  All the cars are covered in a thick frost.

Have a good weekend
lots of love
Sarah xxx

Thursday, 30 January 2014

Welly blisters

So much trudging through the mud!  I now have blisters on both feet from my welly boots.  Anna gave me a gift of thick socks today, which was very kind of her.  I finished making the millionaire shortbread :)

I attended a briefing for parents on the SATS tests for Martha.  It is all so scary!  She has to start revising from now on.  I feel sad for her because I want her to enjoy her last year in primary school, and it all looks very serious for her.  She has made up a timetable: her activities, revision and homework.  I was very pleased with her earlier.  However, I have just found a piece of homework in her bag, that she failed to tell me about (or remember).

Katy has been making Top Trump cards about tudor monarchs.

I "waited in" for the double glazing people to come and finish mending my kitchen windows.  They called me at the end of my hour to apologise for failing to attend, because the fitter was in Warrington.  They are booked to come tomorrow.

lots of love to you all
Sarah xxxx

All ok - I will blog later :)

Tuesday, 28 January 2014

shortbread

Hello there.  Morning walk in rain again.  With a sore ankle I wore trainers, and took a puddle free route.  It was a much shorter route, but drier to the feet.  

At home my ankle deteriorated - it was painful to walk, and slightly swollen.  Ibuprofen and Ice and Once Upon A Time DVD and it started to recover.  I can't remember who gave me the video, sorry, but I am enjoying it.

Later, and more mobile, I try to make Millionaire Shortbread.  Here is my first attempt at shortbread!

An old church friend came round to visit.  We had a good catch up.

Martha was too tired to go swimming.  Katy went and came back pleasantly tired.

Love to you all
Sarah xxx

Monday, 27 January 2014

Homework done (sort of!)


This picture sums up Katy's day.  Annoyed when came home from a school trip to a tudor house; angry because one of her other girl-friends got to dress as a knight, while Katy and Polly had to wear a dress each.



My day has followed the usual pattern - a squidgy walk in the meadow mud, followed by catching up on benefit admin and other things, sleep, shopping for a few ingredients for Millionaire Shortbread, collect girls from school.

Amongst all this, I measured a puddle all day for Katy's numeracy homework.  She tried to do it on Sunday, but after three half hour measures, it rained.  Katy has drawn a graph to show the change in size over time.  At the end of the evening, we went out for a final measure, to discover tyre marks!  A car had driven through it - no water left!  Martha has finished a report about Orangutans, but has not finished her spelling research.  Both have a note of apology in their link books.  I am not worried about it because they really have done all that they can.

I have set up this laptop to be able to print.  My laptop has been sent away, and we had no other laptops set up to print.  I found the CD, and have then followed the long instructions through to having a link between laptop and printer.  It took me a couple of hours.  Relief, when I am finally able to print the orangutan report for Martha to hand in.  Hooray!

So, I am a mixture of satisfied and drowsy.  I think I can hope for a more restful day, tomorrow.

Have a good day :)
loads of love
Sarah xxx

Sunday, 26 January 2014

Birthday weekend




Martha's birthday holds the centre of the weekend.  On Saturday, we prepared for the party.  Martha and Katy made a sticky toffee pudding, as Martha's birthday cake.  Martha's idea was to have two candles - spelling "11", and to blow one out, and snuff the other with her fingers.  You won't be surprised to know that she ended up blowing them both out:).

The party was a premier of a film that Martha, Katy and friends have made together.  When they arrived, every guest was offered a glass of "champagne" and canapes.  No-one liked the canapes, but it didn't matter, because it looked good.  A premier is a good theme for a party.  They played charades and musical statues, and ate everything.  The sticky toffee pudding was delicious.

Sasha made everyone popcorn for the film premier.  Each of them had a bag of popcorn to eat, while they watched the film.  They were all watching the film, and tucking into their bag.  

Here is a photo of the girls at the end of the party.

Izzy J and Polly stayed for a sleepover.  I have to say that when everyone was leaving, I was wondering why I had agreed to have a sleepover.  However, the two pairs of children settled down well.  Martha and Izzy were watching The Voice, and Polly and Katy watched the Bridge to Terabithia.   This morning all the girls helped to tidy up, and Katy and Polly went to the shop for bread and milk.  Martha and Katy are both exhausted!  Homework has had to take a back seat.

Louise came round this afternoon.  We had a cracking game of Perudo until Dave took Martha and Katy swimming.

Health-wise, I am feeling pretty well.  I still have to sleep in the middle of the day, but on the whole I feel a lot brighter.  I nearly have a full head of hair.  I have a stripe around the top of my head that, Martha tells me, looks like a headband; this is my scar, which is hairless.  My hairstyle looks like I am wearing a head band, with high hair behind it.  The high hair is my hair that did not fall out, and although short, it is longer than the new hair that has crawled in decreasing circles, across my scalp, until it has finally met in the middle.  I will have a full head of hair very soon.  It just has to grow across my scar.

Have a good week next week.
lots of love to you
Sarah xxx

Friday, 24 January 2014

Goggles in the bath

Last night there was a thunder storm with a thick shower of hailstones.  The roads were white, like snow.  Katy and I got caught in it and got home laden with ice - guitar and trumpet, were both covered in ice.

My walk this morning was one of my shorter routes, because I was going to pilates at 10 am.  I was amazed that the grass alongside the paths was full of hail.  The hail had survived the night.  The mud was soggy and I had to take makeshift routes through huge puddles, stepping on bits of brick and hand made bridges.

Martha is eleven years old at 1.30 am tonight.  She took her chocolate chip cookies to school.  Katy went vigorboarding at 8am.

After school, Katy made a giant meringue.  It looked amazing.  Martha went to the park with her pals.  We then got ready for the party - the bunting is up!  We still have a few things to do tomorrow, but basically Martha's party is ready to go.

Bath time (three nit checks today).  I painted Martha's nails while Katy got out the bath and got herself dressed, or so I thought!  When I bob back into the bathroom, Katy was lying on her back under luke warm water, wearing her swimming goggles.  She was happy!

Have a good weekend everyone
loads of love
Sarah xxxx

Thursday, 23 January 2014

More cookies

Well, it rained hard this morning.  We all walked to school together, hooded and zipped up (except Katy!).  My need to exercise was greater than the weather, so I was dressed in wellies and waterproof and ready to get absolutely soaked.  However, the weather changed with the school bell, and I enjoyed my walk accompanied by the songs of birds, who sounded like they had not been allowed to sing for months on end.  It was beautiful: blue skies and pretty birdsong.  The mud was pretty special too!  At one point, I was thinking how easy it would be to slip and fall into the brook, and I slipped!  Fortunately, I was able to coordinate and retain my balance. It did make me laugh.

Anna took me to PC World, so my lap top has been posted to someone who should be able to repair it. I took my external memory, but it turned out to be full.  I had to buy a 32MB USB pen, to have photos and documents saved.  Return anticipated in ten days.

Sleep and odd jobs, and the day has passed.

Martha has continued making cookies, to take to school tomorrow.  She now has one each for the whole class and a lolly for a boy who is allergic to milk.  Katy has homework to complete on a lap top and none of us can work out how to copy and paste a picture from the web.  It is amazing how a change in computer can throw you.  Dave had to show me how to open more than one web page at a time.  I also have to find my disk for the printer, because we do not have a computer that is set up to print.

I have had headaches again today.  They have been quite sharp and high pitched, but never for very long.

Hooray! It is Friday tomorrow
Have a good day
love you all
Sarah xx

Wednesday, 22 January 2014

Cookies (edible ones)

I don't really have anything to report, today.  I feel tired and low in mood.  I enjoyed watching Sherlock, slept and collected girls from school.

Martha has made her class chocolate chip cookies.  She has some more to make tomorrow.  They have both been practicing the piano, and had a good lesson tonight.

I missed my walk this morning, and I feel sure this is affecting my mood.  I will have a good long walk tomorrow!

Have a good day tomorrow
lots of love
Sarah xxx

Tuesday, 21 January 2014

Broken computer

PC World will help me mend my computer.  It fell off my bed, nudged by my leg, and landed on the charging connection.  It is all bent.  Mistakenly, I thought the computer was not damaged by the accident; I only discovered it a moment before the battery expired.  I cannot switch it on to save any of the material on it.  PC World will have to do this.

I went for a good walk with Anna, this morning.  The meadows are really thick with mud.  My wellies are thick with it, even after walking home, on the roads from the meadow.

My Macmillan nurse came today.  Good conversation again.   He returns during next chemo spell.

After my sleep, I go shopping for Martha's birthday.  We have a "premier" on Saturday.  Plastic champagne glasses at the ready for "champagne", and canapes.  Martha is getting very excited.  She did a party budget earlier.

Sleep time, already.

Have a good day tomorrow
lots of love
Sarah xxx

Monday, 20 January 2014

Muddle today

My day is thrown topsy-turvy by a lack of planning!  I went for my morning walk - the meadows were beautiful and misty - and cut it short because I was expecting my Macmillan Nurse.  I slept when I got back, got up for our meeting, and he didn't arrive.  When I finally check, I realise that I have the wrong day.

Gotta go, because I dropped my computer last night, and it is not charging.  I will continue on another computer, tomorrow.

love you all
Sarah xxx

Sunday, 19 January 2014

Housework and homework

Early morning we all looked at Cook menu and order meals for next chemo spell.

I ordered a pair of walking shoes from Blacks (Christmas present from Dave and girls).  If they don't fit, I can get tram to Deansgate and return them.  There are at least three outdoor shops near Blacks, so I think I would be able to replace them in same trip.

Homework has hung in the air around us.  Agreed start time was eleven in the morning.  Katy got on with it.  Martha argued against it for 45 minutes.  She could have started and finished one piece, in that time.  In the end, they have both completed their homework.  Katy continued with her literacy homework, this evening - she is really into Macbeth.  She has analysed the feelings of the key characters using internet and her own knowledge of the play.

I have spent all the rest of the day either cooking, or cleaning after cooking (and cleaning after Martha and Katy had an art project in the kitchen).  It sounds grim, but I only had a 30 minute "sleep", which was a light doze.  It was enjoying to be able to absorb myself in something.  I feel reasonably well.

Sorry, I have just been diverted into family phone calls to plan my Mum's 70th birthday.
Sleep time is overdue
loads of love
Sarah xxx

No Blog - but all OK here.

Enjoy your weekend.  :))) 
Thanks for looking.
S x

Friday, 17 January 2014

Pilates

This is my big news of the day.  I make it to my first pilates lesson for a few years.  Jo Murphy (mum from school) is the tutor and about twenty of us pack into a large room that began to feel small.  It is the perfect exercise for me right now - every movement is based on full and correct breathing. Analysis of the lesson would say we did nothing but lie down for an hour, but those of us who were there know otherwise!

The window men came and started mending my kitchen window.  New hinges have been added; next phase is change the insulation strips.  These have been ordered.

Louise came over this evening.  My next chemo session clashes with her birthday, and I have been given permission to start the tablets the day after her birthday weekend (delaying by 4 days).  This gives me the opportunity to go away for the weekend to North Wales.  Lots of details to work out...

We played PERUDO, which is a dice game that Louise gave Martha and Katy for Christmas.  It is a good game.  Basically you guess (or bluff) how many there are of the number on dice.  You have 5 dice each at the start.  Winner is the last one with any dice.  Martha understood it straight away and got knobbled by Louise.  Katy couldn't believe she was winning at one point, and was simply astounded to be correct in what she said.  It was hilarious.

Gotta sleep now
Feeling reasonably well :)
love you all
Sarah xxxx

Thursday, 16 January 2014

New Coffee Shop :(

Beautiful sunshine for morning walk today.  Here is the river Mersey, at the rapids.
My favourite part of the picture, is that there is daylight between my legs!  Earlier, when I approached the river, the torrent was like a herd of bison all squeezing through a gully and wrestling with eachother - it rolled up and down, oozing power.  It really was exciting to see.  A wide river, packed with the fever of angry, aggressive animals.  So powerful!
 
At home, I fell asleep in front TV, and went to bed until 12.45 pm.  My afternoon was just a kind of blundering, that yielded a couple of big wins. 
 
I phoned my double glazing company and asked them to come and look at my kitchen window (it is no longer sealed).  They came immediately, have ordered the parts and are coming to fix it tomorrow. 
 
Dentist's secretary, on the phone, changing our appointment:  I have known her for years and told her about tumour.  She asked me why was I telling her; was it because she had had a tumour.  Amazing - she had a brain tumour, had it removed and treatment and is now free from it.  
 
I had a real laugh with Joan (Dave's mum) - I was telling her that Roger Lloydpac (spelling?) had died, but could not remember his name.  My TV is on silent, but I see "Roger" (only) displayed on the screen, and tell her.  We are swapping funny scenes that he has played in Vicar of Dibley and Only Fools and Horses, and neither of us can remember his surname.  I then say Lurpac as a joke and our conversation descends into hysterical laughter.
 
On the way to collect Martha and Katy I go to Quality Save for a shop.  I cannot believe it - the corner of the shopping precinct is now labelled up as Costa Coffee.  Three shops have been bought and combined, and are in the process of being made into a coffee bar.  I really worry about the impact on the local independent coffee bars.  Who knows?  Maybe it will be a good thing, if it brings more people into Chorlton.  My gut reaction is that I wish it wasn't coming at all.
 
At Comedy Club, I have a good chat with Ali the group leader.  She thinks Katy and Martha are both amazing. 
 
At home Martha is skyping her friend, but electronic goods are all put away at 7 pm.  Katy has gone to bed early, to prepare for vigorboarding club at 8 am tomorrow.  My mum has told me about the funeral - all went well.
 
Have a good day tomorrow
love
Sarah xxx

Wednesday, 15 January 2014

On the mend :)

I make it to school this morning, and catch up with a few people.

Ewa, cleaner came today, for the first time in four weeks.  It was heaven!  She has cleaned everywhere.  My biggest achievement of the day was to mend my broken blind; it shuts properly now. Sleeping for an hour, I miss her at the end of her shift.

I arranged for a mum pal to come round for a cuppa, and basically have done nothing except sit and chat.   My nausea is coming and going, but diminishing in power with every wave.  I feel relatively ok right now.  Hoping to go for a walk tomorrow morning and get back into routine again.

Martha and Katy are currently over-energised by their electronic gizmos: Katy's iPOD and Martha's kindle.  Emailing and facetiming/skyping their friend has become a fashion.  I am trying to work out what the boundaries are.  I think we will start with times when they can use it and times when they cannot.  Katy already knows that she cannot check her messages after 7pm, or I will confiscate her iPOD for a week!!  She lost her iPOD for the night last night.  We already have a rule that they can only use them downstairs for games, that is generally followed well.  Any tips are always welcomed!

I am thinking about participating in the London 10k, in July 2014, but very aware that I will probably only be able to walk the route.  This makes the London marathon seem incredibly close...  Martha and Katy want to do the Great Manchester Run, so I will enter them.  I think, this year, we will make it to watch the main event (we missed it last year).

Wishing you all a good day tomorrow
lots of love
Sarah xxx

Tuesday, 14 January 2014

Tuesday

I spent all morning today dozing in front of the TV. 

This afternoon, I got myself together enough to go to a Look Good Feel Better make up session.  I have been advised that I should go, because you get a really good goody bag.  It is true!  Remarkably, I met Anna there too.  I have been taught how to use all the products, from cleanser, to my third eye brow pencil!  I have had a make-up session with Martha tonight (while Katy was at swimming), I showed her what we had been taught (except the foundation and powder) and she looked delightful.  She then helped me cleanse it (and herself).  My main point of learning, was seeing in a magnification mirror how dry my skin has become.  I need to moisturize. Helen gave me a bag of make-up products for Christmas, and there is plenty in there that will help me improve the condition of my skin.  Martha helped me look through it.  I have agreed that she can try the shower gel.  We had a lovely hour together.

My mum has gone home for my Great Auntie Betty's funeral.  She was late eighties and died in her sleep on New Year's Eve.  My mum is very upset to lose her.

Have a good day tomorrow
lots of love
Sarah xxx
(I am still very nauseas, but managing it OK)  May it be gone tomorrow!)

Chemo 5

Hi there,
Sorry - I had no internet yesterday, nor the energy to get it going.  Mostly, I have been in bed, nauseas or worse.

My Macmillan nurse came, and we had a good talk about lots of things.  Swimming is off my agenda until the chemo is finished (warm moist atmosphere, potentially full of germs).  Polates, would be a good start for me; I have just got to get organised. 

I am still upset about my treatment by my ex-GP.  However, I have said what I want to say.

I continue to think about the second Manchester Royal Infirmary (MRI) A&E doctor, as well.  I had returned to the MRI (two days after a visit scheduled by Dr Sabeti) with newly developed double vision.  I do not think I was checked over properly.  I recall thinking it was odd that I was sent home to rest when all the manuals say you must get seen by a doctor.  I realise that part of the problem was that I was not functioning properly; I barely speak.  The first A & E doctor checked me thoroughly, and sadly, I passed all the tests and they rejected the request for a scan.  I am disturbed that the development of double vision did not spark the need for a scan. If and when I feel like following this up, I know how to do it.

Other stuff - I showed him photos of me pre-diagnosis:  one with Martha and Katy in Berlin (where I was struggling with headaches), and one with Jackie and Louise at hockey.  He read the poem that Jackie has written for me, and I have seized it as my goal - all the features she describes are accurate observations - I want to get myself back in action again.  Two more bouts of chemo to go.

Good news, of course, that the scan showed that my tumour is responding to treatment.  I am grieving that I still have a tumour, but if it is not growing, nor troubling me, then I can live with it.  I have to come to terms with this. 

continued ...

Sunday, 12 January 2014

Chemo day 4

I have several breaks to my sleep, but on the whole, I sleep well.  I wake to my 6am alarm and take Ondansatron.  I wake to 7.30 alarm at take my chemo tablets.  I get up shortly after. 

On the whole, I have had a good day.  I have had flashes of nausea, but nothing has reached the levels of the day before.  No vomit day, hooray! Hoping for a similar day tomorrow, however, I will accept whatever comes my way. 

I haven't really done anything all day.  Martha and Katy have played well (mostly!), and Polly came over to play after arranging it on facetime (ipod touch to ipod touch).

Truman Show then bed.

Good night all
Have a good week
lots of love
Sarah xxxx

Saturday, 11 January 2014

chemo day 3

Nausea through the night, I took all the pills that I could (spaced out)(the pills not me!!) and still ended up vomiting.  In the end, I managed to sleep and awoke late.  Totally confused, I phoned Christie hotline for help.  They are always amazing.  I follow what they say, exactly and start to feel a little more settled.  On and off all day, I have been struggling with nausea and vomiting.
I couldn't go to the theatre tonight, but mum friends have been brilliant help, and taken Martha and Katy to see Robin Hood.
I watched the film Senna (on loan from Helen).   The salmon byriani is all gone. My only experience of it was yesterday, Martha and Katy have enjoyed it today, thank you, Sally and Alan.
Have a good day tomorrow
Sarah xxx

Friday, 10 January 2014

chemo day 2

Woken by Cook delivery
Seven thirty in the morning and I am woken by my front door.  My Cook order has arrived very early!  Prior to this, I have been awake at 6am to take anti-sickness pills, and now it is chemo time.  We are all in bed, sound asleep.

Parcel collection
The three of us walk to school together.  Martha is ready to present her "new skill", which is knitting, to her class, and to year 5.  My morning walk is to a newsagents, to collect a parcel.  To cut a long story short, I did not take any formal identification, so I was denied the package.  In the afternoon, I returned with a gas bill.  The funny thing was, that when I received it, it was a ten inch box, about five inches deep.  Having a laugh with the shop keeper, I open it, to find a key ring in the middle of it.

Benefits admin completed
The library offers a service of copying original documents for the education service.  I have my final set of "evidence" copied.  I am delighted to announce that I have finished all my admin. 

Martha is a buddy
Martha comes home from school, bouncing and showing me her buddy badge.  She has been made a buddy.  Excited and delighted!

Katy came home and made flapjacks.

Usual amount of day time sleeps...  Nausea is manageable.

Enjoy your weekend
love you all
Sarah xxx

Thursday, 9 January 2014

chemo day 1 - quiet day

Immediately, I am into the routine of taking piles of tablets in the morning. 

My morning walk was changed by Katy.  My meadow walk became - go home and return with Katy's trumpet.  I then decided to walk a couple of errands.  I popped into the DWP office in search of my tax credits letter, and checked if Martha's wool had come into the craft shop.  I did emerge with an authorised copy of my tax credits letter, which is good.

Breakfast about 10.30 am, I am feeling a little nauseous.  I have had a very quiet day.

I sleep for a couple of hours.  When awake I have a snack, and then go back to sleep again.

Have a good Friday
love
Sarah xxx

Wednesday, 8 January 2014

Scan update - good news :)

Christies this morning for appointment with Dr McBain.  My approach has been to get there early, get my blood test done and then wait to see the consultant.  Every time we go, there is what feels like endless waiting.  Queue to get registered; sit and wait for my turn to have blood test; sit and wait for an "on time appointment" (as advertised on a screen in the waiting room), that is over an hour late; wait for prescription to be processed.  We leave at 9.15 am and get home at 1 pm.

My appointment is all the usual things - my headaches, my stiffness of body, my jaw is still not opening without pain, my hair is growing back etc.  The doctor (not Dr McBain) starts to end the appointment.  We ask about the scan, and remarkably, she was not aware that I had received no feedback from the scan. 

Summarising the feedback:  the treatment is working (Hooray!), the remaining tumour has not grown at all, which is called "stable".  What happens next is that I continue the next three months of chemotherapy and a couple of months later, I will have another scan.  What I hope for is that it is stable, which frees me from immediate further treatment.

Before now, I have understood that the doctors were treating the remains of the original tumour, and I envisaged a skin that was left behind deep in my brain.  This is not the case.  My original tumour was 8cm in diameter.  What remains is a small tumour, described as 6cm x 3cm.  I believe that it is unlikely to be removed, or reduced.  I think that my healthy future is to live comfortably with a stable tumour.   In other words, a tumour that is no longer growing.  No-one's ideal scenario I know, but I am sure that I can do it.

Interestingly, Martha and Katy have both been interested in the scan.  Katy asks me lots of questions, which is no change to her previous behaviour.  "Is it growing?", "no",  "Is that good or bad?".  However, I have seen a real change in Martha.  We had a long (separate) conversation about it, and she pieced together what she knew with what I was telling her.  She showed no hesitance and was very relaxed about it.  "Why can't they take it all out?", "because they might cause brain damage", "Is it better to have brain damage, or some of the tumour left behind?", "Some of the tumour", with a giggle, "and it's not growing - that's good isn't it?".  Both girls understand that it is good news.

I did ask the doctor what "in remission" means.  It is not possible for someone with brain cancer to be in remission, because it is not possible to remove the whole tumour.  To be in remission you would have no tumour and no cancer cells.  I believe my best option is to have a stable tumour.  However, as I write this, I do not understand how some people have beaten brain cancer.  I will explore further.

Have a good day tomorrow.  I start my chemotherapy tomorrow.  Anti-sickness pills followed by seven chemo capsules!  They have run out of the bigger size, so instead of three capsules, I have seven.  I can't remember all the timings now.

Have a good day tomorrow
lots of love
Sarah xxx

Tuesday, 7 January 2014

January blues

DWP office
Woken by my alarm, I was shocked that it was time to get up.  We get to school reasonably comfortably.  My "DWP" appointment is at 9.30 am.  This is at the Department for Work and Pensions, which used to be the social security office.  All my documents are photocopied.  I am pleased because I do not lose sight of any of them. 

Lost letter
Except, when at home, I find that one of them is missing:  my tax credits letter.  I search for it, but conclude that it must be left in the DWP office.  I will have to go back and ask about it.  Nothing is ever simple!  I decide to post my last application without the letter, so that my claim is logged. 

New library card          
The library is close to DWP office, so I went there to get a copy of Tinker Tailor Soldier Spy.  My library card was so out of date, the librarian insisted it had to be replaced.  My old card was yellow, with a bar code stuck on with sellotape.  Inducted in using the self service counter, I have a copy of the book.  I was given a cd in June, which sadly was faulty.  My plan is to read the book, and then watch the film again.  I didn't really understand the film when I saw it in the cinema.

Usual sleep
Lunchtime sleep - now generally about 45 mins.  It is getting shorter.  When I wake, I call school to arrange to see the head teacher for a catch up.  I have a chat with deputy head.

January blues
Later, I feel really tearful.  Many people suffer from January blues.  Differentiating between what my illness is causing, and what would happen anyway is always difficult.  I think all that happened to me today, was that I had some time to myself, to think and reflect and I ended up very tearful.  I can't blame the steroids anymore!  I feel low, but ok. 

Chemo time!
I go to see my consultant tomorrow.  It is chemo time again.  Happy that Christmas and New Year fell in a good spell, I am prepared for my poorly spell from the weekend onwards.   I hope to be well enough to see Robin Hood with school on Saturday, and to conk out for the week ahead.  My mum is kindly coming up to help.

Have a good week
lots of love
Sarah xxxx



Monday, 6 January 2014

School tomorrow

Katy went to see the Hobbit this morning, with Polly.  She says she enjoyed it, but I have been picking up little glimpses of Katy and Polly playing tag in the toilets.

Knitting - Martha finished making her bag today.  This project has been a challenge that Martha has really enjoyed.  She has filled her bag with items to take to school, so that she can show her bag and how she made it, alongside a powerpoint presentation.


 
I had my usual lunchtime sleep.  I woke in the middle of a dream and was completely disorientated.  Was it morning? Was I late? I jumped up and then realised it was lunchtime.
 
This evening - three nit checks - just double (quadruple) checking that the girls are not taking nits to school.  I am now exhausted!
 
Chemo starts on Thursday. 
 
Have a good first week at school/work.
 
lots of love
Sarah xxx

Saturday, 4 January 2014

Christmas and New Year photos

 
 Martha, Katy and Grace do the washing up on Christmas Day.
 
Baby Julian is loved by all the girls!
 
 
Katy made everyone elastic bracelets to wear for New Year's Eve


 
Martha and Katy play Shut the Box 
 New Year's Day movember moment. 
 Is that Bev under there?

 
Harry and Martha and Katy go to Chill Factore.  Here they are coming off the slopes. 

 Katy, Harry and Martha