Philomena

I am not sure if I have spelt the name Philomena correctly, but my night out was cancelled by two of my pals.  Katy was already on a sleepover, and Martha was in the middle of handover.  I decided to make the most of it, and went to see Philomena at the cinema.  It was a very good film - I recommend it.

I went for my walk this morning.  It rained really hard a couple of times, but generally I was happy to be out and pushing myself.

A shower, and a visit by my community nurse.  I am now taking one eighth of a milligram of steroid each day.  I realised that I can bite the half tablets into quarters.  I know it sounds like I am sharing out sand, but I am hoping I can be steroid free over Christmas.  My community nurse wisely advises me that I must follow my body, and it would be no good to be ill over Christmas.  Let's wait and see ...

Old hockey pals, Kate Walton and Lizzie Symonds (with baby Martha the second) came to visit.  It was great catching up with them.  I am still struggling with my memory.  They could both remember things we did together, that I have no recollection of.  I don't know if this is from the operation, or if it is simply my age.  Either way, I have to live with it.

Sleep and collect Martha from school.  She is playing the steel pans tomorrow at the Church Christmas Fayre.  I have never seen her play.  She will go in the morning, with her friend that she is staying with tonight.  I will meet them there.

Good night
lots of love
Sarah xxx

World Book Day

Where's Wally, came home looking the same as when "he" went to school.  I made it to the e-safety talk, for a while, but had to leave.  I have a limited amount of time that I can focus, and it ran out.  I was chaperoned home by Mr Gillon, which was a good opportunity for us to catch up a bit.

I haven't done very much today.   E-safety, soup and sleep, wash up, pick up girls from school, two nit checks, read, bed.  Martha still has her rash. 

Bodie died from The Professionals.  I still fancy him now!  Very sad.  I used to watch the Professionals every week with my good friend Lin.  She fancied Doyle. 

I started taking steroids on alternate days today.  I did not take any this morning.  Tomorrow, I will take a quarter milligram.  MRI scan is on 13th December. 

Have a good Friday
lots of love
Sarah xxx

Ready for world book day

"Where's Wally?" and Pippi Longstocking are both ready for school tomorrow.  Katy has painted stripes onto a white shirt, using poster paint.  She will look great at the start of the day; I wonder what she will look like at the end of the day?

Readathon has started.  Martha is reading the Hunger Games (2), and Katy is reading Willy Wonka.  I don't know if Martha is going to stay in the level 6 literacy group.  I don't mind either way, as long as Martha understands the reasons for her decision.  We are going to talk about it over the weekend.  She is still covered in a rash, and on antibiotics, sleeping eleven to twelve hours a night.

I have worked out when to give up steroids.  For the next four days, I will take a quarter milligram on alternate days.  I will then stop taking any.  This statement fills me with fear, but, if I am to be steroid free over Christmas, it has to be now.  I am likely to be steroid ill before my next chemo appointment on 11/12.  If I am sick like last time, Chemo ill comes during the end of term, and I become well as term ends.  Let's wait and see ...

I had a go at working out my gas bill and getting a better deal.  I have got to a point where I am stuck in a corner.  Money Saving Expert recommends dual fuel, except I think I have this already.  I will have another go at it tomorrow. 

Gotta to sleep now.

Have a good Thursday
love
Sarah xxx

A bit better today :)

We have the usual fussy morning.  Martha has not completed her literacy homework, because she is not sure she is in the group.  It turns out it is a level 6 group and she is part of it.  I am not sure where we are up to with this.  I will talk with her again tomorrow.  I think she is worried because she is not a fast reader.

I am feeling a bit better today.  I went for a short walk with Anna, down the meadows.  Home for a snack and bed.  I do nothing all day.  I have not worked out when the best time is to give up the steroids.  I will have to look at this tomorrow.  I have lost the date for my next MRI scan!  Something else to chase up tomorrow.

We have school book dress up day on Thursday.  I can't keep up with all these special dates!  Katy wants to go as Where's Wally and Martha wants to be Professor from The Lion, The Witch and The Wardrobe.  We don't have a red stripey shirt ... Katy is going to colour one in!

I have been asked if I can go in to school and help pupils learn their lines for Charlie and the Chocolate Factory.  I am trying to find a way to give a small amount of time, without compromising my rest and other priorities (eg finding a new GP).

Gotta sleep

Lots of love
Sarah xxx

Macmillan meeting

We made it to school in reasonably good shape, this morning.  Martha and I gave her antibiotics to her teacher.  She was feeling tired, but was in good spirits. 

I went to the chemist to collect the rest of her prescription.  It was split into two separate amounts, because it has to be kept in the fridge for less than a week.  I usually get given two bottles and instruction on how to make the second bottle.

I went into Quality Save to buy a birthday card, but couldn't remember why I was in the shop.  I had to walk around until I remembered the purpose of my visit.  I have to say, that this is very frightening.  I was very relieved when I saw the display of cards, and recalled what I was doing there.

I talked to my Macmillan nurse about this, because I have noticed a decline in my memory.  I hope he is correct when he says that it will be partly caused by chemotherapy, and that my memory will improve again.

I have learned that chemotherapy is not a breeze!  We talked through my preparation for the next phase.  Over the next couple of weeks, I have to rebuild my fitness.  I am likely to be ill again after each five day course.  I am not looking forward to this at all!  My next phase begins on 11th December (11/12/13 - an excellent date!  This can never happen again) . 

 I started chemo on 14/11 and I become ill on 16/11.   I stop taking chemo on 18th.  I start to recover on 21/11,

Next month (if it is the same pattern):  start chemo on 12/12, become ill on 14/12.  Stop taking chemo on 16th.  Recover on 19/12. 

Steroids - I am so nearly there!  I am not quite through my "dip"; my left eye remains swollen.  In a few days, I hope to start taking one quarter milligram on alternate days.  The next step after that will be to stop completely.  I have to plan this into my chemo programme, so that I don't get a clash of steroid and chemotherapy side effects.

I can't get my head around integrating steroid reduction with chemo programme - I will continue this tomorrow.  I would dearly love to be free of steroids through the Christmas holiday.  Also, if I follow the same pattern, I will be ill through the end of term.

Have a good week
loads of love
Sarah xxxx

All OK - I will write tomorrow

Gotta sleep now. 

Have a good week
love
Sarah xxx

War Horse

I sleep through most of the morning.  I have to get up to check Martha and Katy are both safe - they decided to make a cake that is gooey in the middle.  Their objective was to make it for Louise, however, when they finished, they decided to eat it themselves!  Their technical skills were excellent - they created the pudding and it did ooze "sauce".

Louise came to go to see War Horse.  It is an amazing production.  Yes, we were crying ...

We watched Strictly when we got home, and then the 50th anniversary Dr Who.  All in bed now.

Love you
Sarah xxx

Martha's trip

I made it to school with Martha, armed with her antibiotics and note for teacher.  We bump into Anna, and had a hug.  Martha realised that she had forgotten that she was going on a trip.  She didn't have a packed lunch ...  Once again, I take a tearful girl into class.  We couldn't find the school cook, so I gave her money to buy lunch at the Imperial War Museum, and talked it all through with teaching assistant.

I then momentarily accept a lift to Decathalon, and instantly realise that I was not fit to go shopping anywhere!  Back to bed for me.

My nurse comes to check on me, and is delighted with the change in my face.  I still have one swollen eye, but nothing like I was; looking like a boxing match loser!

My practice manager phoned me and has invited me into the surgery for a meeting.  I am going to contact my Macmillan nurse to let him know, because I will be with him the day before, and we may be able to discuss it. 

Martha and Katy are downstairs making gooey chocolate puddings - they have taken the recipe of Junior Bake off.  Gotta go and check how they are getting on.  So far so good :)

Wishing you a good weekend
love
Sarah xxx

Turning a corner - hooray!!!!

Very tired, so this will be short.  I am hoping I will be able to walk to school tomorrow.

Katy did her school assembly.  I will add photos tomorrow.  I wasn't well enough to go.  It is a shame it wasn't a day later.

Dave took Martha to the doctors, and we have another prescription of antibiotics.  She has a rash up her belly, top of arms and legs.  This is her third set of antibiotics.  She likes the sweet banana flavour - she says they taste like the moulded banana shaped sweets.  I don't feel tempted to test it!

Dave brought girls home for a shower, and I end up doing three nit checks!  He is abroad again tomorrow.

I have slept loads, started eating a little more, and bit by bit, I am feeling my energy returning.

lots of love to you all
I will try to reply to texts tomorrow, thank you all.
Sarah xxxx

 

Bed all day except watching the end of the Poseidon Adventure

I am still poorly.  Martha and Katy are looking after themselves very well.  Katy is prompt and organised; Martha is learning how to manage her time a little better in the morning. 

I have seen Macmillan Nurse, who will return on Monday next week.  He thinks this spell is caused by the chemotherapy.  This is not news that I want to hear!

I am to take anti-sickness tablets to help my stomach to settle.  I am finding food tasteless and it gives me nausea.  I have lost a little weight, I think.  Not a bad thing!

He is concerned about how I feel like I have been in a punch up.  I remain stiff and find it difficult to move.

Puffy eyes - steroid reduction.

I can't remember the rest of it.  I will fill it in another time.

Katy is performing in class assembly tomorrow.  Fortunately, she doesn't mind that I can't make it, because she has Dave's full attention.

Gotta sleep

love you all
Sarah xxx

Still poorly

I got up with Katy, who was already dressed.  I lasted only one descent of my stairs, and one ascent, and had to go straight back to bed.  I have been in bed all day.

Martha and Katy took themselves to school.  Katy made me breakfast and Martha made me some tea.

My community nurse came to visit; I called yesterday to ask for help.  She is observing the swelling in my eyes, and recommends that I follow what my body is saying.  I stay in bed.

Tomorrow, my Macmillan nurse will visit, and my community nurse will talk with him so that he can be part of the monitoring of my health.

Lisa and Iona brought the girls home from school (thanks).  Tanya brought round a back of groceries last night, too - Martha and Katy have felt very spoilt :) :)

I did have a chat on the phone with in-law Margi.

Wishing you all a good week
love
Sarah xxx

Lytham St Anne's Beach Hut trip

My mum took us to our Beach Hut.  Martha won this trip in the school fair, in June.  I have no idea how much it costs, if you choose to hire a Beach Hut.

We had lunch in the Toby Inn (Roast Dinner). Martha and Katy had a great time digging sandcastles on the beach, with perfect weight of sand.  They enjoyed running up and down the beach chasing dogs too.  Mum cooked us tea in the beach hut.

I was not well.  I had to leave my lunch to go and take anti-sickness tablets, and then had to take my lunch away in a doggy bag.  I slept in the beach hut, which I had not prepared for; my blanket was my Mum's stripy jumper. 

At the end of it, I am glad that Martha and Katy had a good time. 

Doing Ok for now

I will write more tomorrow.  I have spent a lot of today asleep.  I feel like I am moving about in soup.  Everything is harder work than it should be.

May this phase pass soon ...

Have a good week
love
Sarah xxx

Third day of chemo and 6th day of steroid reduction

Saturday:

These don't look too bad.  I feel like I have lost a big fight with Muhammad Ali.  My left eye is really puffed up and swollen.  I think this is the worst it has been, except directly after the operation in June.

 

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