First and second days of chemo

I have stuck to the timetabled regime.  I am too tired to write now.  All is good.  I will catch up tomorrow.
Good night :)
love
Sarah x

Friday:  Too-tired developed into too-ill.  I have had a bad day today.  I woke up feeling like I was about to vomit, and had to take an anti-sickness pill at the start of the day.  I couldn't take Martha and Katy to school.  Katy walked to school on her own, and Martha accepted a lift from my Mum.  I slept until about 11am, I think.  I watched TV for the afternoon.  My left eye is very puffy again.  I have an on going headache.

Martha and Katy had Children in Need day at school.  Martha was part of a group running a "fete" in the school hall. 

I have to go back to sleep.  Tomorrow we have a beach hut booked at Lytham St Annes.  Martha won it in the school fair.  We couldn't make use of it through the summer, so we are going to see what it is like on an Autumn day instead.  We are taking a pack of cards with us :)  I am hoping to be well enough to travel.

lots of love
Sarah xxx

Charlie and the Chocolate Factory weekend

 

 

This was our big holiday to London.  Martha's mouth was full of ulcers, that were starting to recede.  Dave gave us a lift to the station, and we met Gee and Diane at Euston Station.  We left the station by taxi and arrived at Helen's as an excited group.  Helen's family arrived moments later.  The picture below, is Martha and Katy with Joseph, Samuel and Theo, at the end of Charlie and the Chocolate Factory.

 

Katy went to see the Lord Mayor's parade with Helen's family, who have recently moved back to England from America.  Martha and I went to bed for an hour.  I wake to an egg Florentine - this is always my favourite!  Thanks Helen.  We travelled by taxi with Helen's Dad to meet up with the Bunches at the theatre.

 

Charlie and the Chocolate Factory was great fun.  Willy Wonka was played expertly by a Chris Biddle doppleganga!  The oompa loompas were great fun, and very creative.  They were formed in different ways in different scenes - the best version was two people forming a midget by standing one behind the other.  The person at the back gave the arms, and the person at the front gave the feet.  Add tap dancing shoes, and it was hilarious.

Katy was disappointed because all the songs, except Pure Imagination, were different to those used in the original film.  She wanted to sing along with Augustus Gloop!  Martha laughed her way through the whole performance.

 

In the evening we had dinner with all the Bunches. I was very tired by now, and had to slump on the settee for a while.   We had a toast to Helen, to congratulate her on her success in climbing to Everest Base Camp, and managing to get home again, in difficult weather conditions.  I saw some photos from the trip, one which I was stunned by, and think of all the time.  Thanks so much, Helen.

 

Sunday was simple from my point of view.  I got up with Katy, and made her breakfast.  Martha slept until 9 ish.  I went back to bed and slept a little longer, had a bath and then eggs Florentine again.  I was so incredibly spoilt.  We then all head out to the Princess Diana playground.

 

 

 I think Helen thinks she is being Sherpa-ed by this sheep!

 

 Here is Katy on one of the climbing frames.

 

 At the end of the weekend, Katy is captured by the Bunch's American Accent.  "Can I have a fruit box?"  We meet Chris Biddle in Euston Station for a burger lunch. 

Love to all of you
Sarah xxx

 

Letter to Primary Care Manager delivered

Business
I have collected my travel insurance medical certificate from my doctors' surgery, and delivered my response to the letter that I received from Dr Black.  I have said everything that I need to say, and resolved to walk away from it if I don't like the response.  My next task is to send my travel insurance claim.  My ambition is to be able to watch a film without feeling like I should be doing something more serious!

Martha in good spirits
Before school, we played Martha's Children in Need fundraising game, so that she was confident about how the game works.  Martha's ulcers have cleared up, so she ate properly.  She was smiling when she went into school.  I was so relieved.

Beautiful walk
It was a beautiful morning, for an Autumn walk around the meadows.  Anna and her brother joined me.  The sun was low and sharp.

Sleep
I had a lunchtime sleep, and later a good chat with Martine.  Our laugh, was that she came and told me that Izzy has got a place in Guides.  I haven't told anyone that I have withdrawn Martha, and I had to tell her that Izzy probably has Martha's place. Martha is going to lend her a uniform, until she goes back to Guides after Christmas. 

Drama club
In the evening, I went to watch Martha at her drama club.  I have not been there since February, I think!  I joined in, but there came a time when I had to give in, and sit out for a rest.  Katy went swimming with Dave. 

Vacuum Cleaner belt
My vacuum cleaner's belt has snapped, and the belt in my cupboard is not the right size.  Grrrr!  Ewa, my cleaner arrives in the morning at 8am, and I don't have a working vacuum cleaner.  All my fault for not reading the package properly.  I go to see my consultant tomorrow, so won't be able to get a belt until I come home.

Chemo starts again tomorrow. 
I don't know if I have mentioned this already or not.  I have cut down my steroids to one quarter of a milligram.  Tomorrow is day three.

My mood, on the whole has been very anxious today.  I don't know if it is the steroids, or just a bad mood!  Going to sleep now.

love to you all
Sarah xxx

Letter to Primary Care Manager finished.

Charlie BLOG coming soon!
I will do a page about our weekend in London, over the next couple of days.  We had a great time, and the show was exciting and fun.  We are all very proud of Helen, too, who has completed her journey to Everest base camp.

Mum is here :)
My mum has come to stay.  She has driven up to Manchester, so we were able to do some chores using the car today.

Incentive scheme
Katy has responded really well to a sticker incentive scheme - she has to get up, get dressed, make her own breakfast.  For this, she gets a sticker.  If she gets 15 stickers, I will get her a DVD copy of Monsters University.  Martha is not interested in any incentive scheme - she does not want to get up!

Martha gets up early, which is good.  Unfortunately, she gets very upset about her Children in Need fundraising project.  She has got very confused about how to run the stall.  I end up taking her to school in tears, again.  I go for my walk (in the rain) after dropping girls at school.

Letter to Primary Care Manager
My letter is finished.  I will post it tomorrow.  I also collect my travel insurance medical questionnaire tomorrow.  New doctors' next ...

I am very tired today.  I sleep through lunchtime, and I am settling into bed now. 

I will write a longer BLOG tomorrow.

Have a good week
love
Sarah xxx

Charlie and the Chocolate Factory

I helped Martha use mouthwash on her ulcers today, and left her in school.  She had a yoghurt for breakfast.

I went for my walk, and during the walk took a call from Helen.  We are going to stay at Helen's, in London, and to see Charlie and the Chocolate Factory.  I come home and have a bite to eat, and then I have to go to sleep again by 11.00 am.  I am woken by my alarm at 1.30 pm, and I can't wake up.  In the end I make myself get up, and I draft my letter to the Primary Care Manager at my doctors' surgery.  I have sent it to a friend for comment.

I collect Martha and Katy from school.  Martha is crying on the way home.  I make her favourite soup - carrot and coriander - so that she can eat something nutritious and soft.  I didn't make Katy anything. thinking that she was going out.  Katy solved this, and made pasta carbonara.

Martha has improved a little through the evening, but she still has ulcers in her mouth.  Some have gone down, so hopefully it will pass soon.  I feel bad that I am taking them both to London tomorrow, but I would feel worse if we missed Charlie and the Chocolate Factory.

I managed one nit check.  I will have to do the other at Helen's.

Good Night
Have a good weekend - I won't be BLOGging over the weekend.
lots of love
Sarah xxx

Into the football finals :)

In short, my day is:

• breakfast with old uni friend Gavin;
• walk with Gavin, in the sun :)
• long sleep
• potter (only 30 mins available)
• collect Martha from school

Martha runs out to me with a smile - her proposal for fundraising for Children in Need has been chosen.  She is delighted with this (I am quietly less-so because I want a break from encouraging her to do her homework!).

We head home and she nearly finishes her Chorlton Challenge world awareness project.  She names every country and capital in Europe; names on another map all the key rivers in the world; she names all the counties in England, Wales, Ireland.  The only bit left is to name the counties of Scotland - she will finish this in the morning.

Her ulcers are agony.  She has eaten lasagne - this is good.  However, the teeth clean - mouth wash process has her crying in pain.  I feel so sorry for her.  I hope the ulcers start to recede over night. 

Katy comes home from football, so excited that they made it into the finals.  They have been unbeaten over three football tournaments: some draws.  Her other big news is that she has been given a place in the trumpet group.  I am pleased for her.  I am not sure what the practicing will sound like!

Katy decides to enter the swimming club gala.  Martha declines - she has missed so much swimming through illness, that she wants to build herself back up again. 

Bed now.  I had a good day with Gavin.  It is always a joy to see him.  I plan every year to go down and see him in Brighton.  Maybe we will make it this year.  Let's hope!

I am starting to feel a lot better, I am glad to say.  My mood is definitely lifting. 

Have a good Friday
loads of love
Sarah xxx

Flu jab

Martha is poorly this morning, slow to get up, has a big ulcer on her tongue.  She doesn't eat her breakfast.  I take her into school in tears.  By the end of the day, she has a mouth full of ulcers - her tongue, in her cheeks, in the front of her mouth.  Bonjela - Martha hates it!  She can't stop salivating while she puts the gel in her mouth.

Dave comes over for a cuppa. I then have my lunchtime sleep.  I have an appointment for a flu jab, and I am anxious about this.  We are going to London at the weekend to watch Charlie and the Chocolate Factory.  I was worried that the jab could make me ill at the weekend.  I was reassured by the medic that I would only have a stiff arm, and that this would pass by the weekend.  I agree to the jab.

I collect my prescription for soluble paracetamol, and it has been made incorrectly - for tablets.  I walk back to surgery and ask for the revised prescription to be sent to my local pharmacy.  Grrr!

I collect Martha from school, and then return to collect Katy from choir.  Both girls have a good piano lesson.  Despite being under the weather, they are both showing great progress.

Sleep time
lots of love to you all

Sarah xxx

Fireworks tonight

I walked around the meadows this morning.  Generally, it was raining.  I was wearing my welly boots, so the puddles were no problem to me.

At home, I have a cup of tea and watch TV until my Macmillan nurse arrives.

We talk through my situation with my GP, and agree that my goal is to find out what the surgery has learned from my case, and what they will do differently in the future.  I will write to the Practice Manager; he will look at letter before I send it.  I will ask what the outcome of the significant event review was.  I think he thinks that I should give up soon, because I am finding it all so upsetting.   I am going to change practice, as soon as I can.  I am feeling tired of being upset.

Katy and Martha took me to the fireworks at the Horse and Jockey.  They were much better than the football club display. 

Bedtime :)
lots of love
Sarah xxx

Wasted trip to the docs - grrrr!

I have been very tired today.  I took the girls to school, and organised Katy's penicillin with her teacher.  No football club for Katy tonight, or cubs - our objective is that she is well enough to play in the football tournament on Thursday.  Martha remembered another piece of homework, and read the first chapter of "The boy in the striped pyjamas", before we left.  They are studying World War 2.

I watched a little of "The Wright Stuff" and then went back to bed. 

When I get up, I get the information that I need for my travel insurance claim.  The medical form is at the doctors', and they have asked me to find out when I took out my travel insurance, and the dates of the flights that have been cancelled.  This takes a call to my insurance company (the people that we are sending the medical form to), and I check my flight bookings with the airline company.

I walk to the doctors' on the way to pick up Martha and Katy from school.  I am also planning to collect a paracetamol prescription.  However, at the surgery they do not have my prescription ready, and they cannot find the medical form.  I am asked if I can come back another day, which I am disgruntled by. 

I have not resolved the review of my case yet. I remain upset by the letter that I have received.  I bump into Tanya on the way to school, and end up in tears.  Basically, I end up in tears in the playground, which can only feel embarrassing (even though I know you will tell me not to worry about it).  I do have a good chat with another friend, and I am starting to feel much clearer about my way forwards. 
In short,

• change to another doctors' surgery;
• there has been a review of my case with a group of doctors - it has been a "significant event".  I doubt that I will be allowed to see the minutes of the meeting, but I am going to ask if I can see the outcome of the discussion.  What have they learned from examining my case?  This is the fundamental question that I want to know the answer to.  My goal has always been to ensure that someone else would not have the same experience that I have had.

The only thing that I remain unsure about is how to deal with my GP's attitude towards me.  My current thought is that I arrange to meet the primary care manager and describe my last visit to the surgery before I was diagnosed.  I guess that I will not achieve anything, but I may feel better if I have had the opportunity to share it. 

Back to sleep for me.
My eye remains swollen.  This is always a sign of how I am feeling; as my spirits increase, the puffiness decreases (negative correlation).

Helen has made it home from Everest.  I have just received an email saying that she is in the bath!  Hooray!

Have a good day tomorrow
love
Sarah xxxx

PS Thanks to everyone in the playground.  Your support is really special to me :)

Pyjama Day

Very little has happened today.  We have had a pyjama day.  Martha got dressed at 4.30 pm to go to a party at 5.0 pm.  Katy is still poorly, but definitely on the mend.  She will go to school tomorrow.

The big news is that Martha has finished her homework.  Phew!  She has finished her news journal. 

I have spent most of the day either asleep, helping with homework, or watching Strictly Come Dancing recording.

Sleep again for me, as soon as Martha is in bed.

Have a good week
loads of love
Sarah xx

Bonfire night in torrential rain

I have been very tired today, and very weepy.  After breakfast and nit checks, I slept through lunch.  Edwina catered for the three girls.  Ed helped me clear some junk out of the cellar, and took it to the tip.  She also helped out with a number of big and small odd jobs.  I am very grateful for her  help.  Ed and Mary went home late afternoon, and we got ready to go to bonfire party at the local football club.  There was torrential rain, and the fireworks were mostly damp and disappointing.  There was a short spell of fireworks with big bangs and good visual explosions.  The fire was beautiful, but difficult to enjoy in the weather.  The wind would whip up burning ash and blow it through the crowd.

Izzy and sparkler

 Katy in front of the bonfire

 Martha and Izzy having a hug

Katy is doing well.  She had ear ache tonight, but I think she would probably have had ear ache because of the weather.  I have a headache. 

Have a good day tomorrow
love
Sarah xxx

Grayson Perry

Our activity today has been to take the tram to the City Art Gallery to see a modern and contemporary art exhibition, that was recommended to us by Anna.  The exhibition is the life story of Tim, from his birth to his death, using tapestry.  The artist is Grayson Perry.  We are still discussing elements of the story. 

Katy is doing ok.  She ended the day with a fever, but on the whole has been reasonably well.

Edwina has helped me with a couple of "technical jobs".  She has got my DVD player to show films through my TV.  This is fantastic news!  My HMI cable was round the wrong way.  Also, she has helped me get help from BT to get BT Sport to show on my TV.  Thank you so much!

Gotta get some sleep now.
lots of love
Sarah xxx

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.