Saturday, 28 September 2013

Beautiful Day

 Iona and Katy
Lisa sent this picture over of Iona and Katy, at school.


Martha loses a tooth
This is Martha's tooth, before she bravely pulled it out herself.  I hope the tooth fairy remembers to visit tonight!
 
 
 
Morning Walk
Martha and Katy stayed with Dave, last night.  I had another bad night's sleep, but was able to have a late sleep and a potter.  I managed to do a bit of DIY - a job that I have been meaning to do for a couple of years.  I have glued the door handles to all the bedrooms.  I also rearranged two cupboards in the kitchen, so that I can put all my healthy teas in one cupboard, and fit my glasses and cups into another cupboard.  I go for my walk around the meadows.  I bump into Ann from school, and an old mum friend, who had not heard my news. 
 
I took a picture of what was a giant blackberry bush, that has now turned into a plateau of lily looking convolvulus or bindweed (thanks Cherry).
 

 
 
Into bed for a sleep, and woken by Martha and Katy coming home.
 
 
Beautiful day in the park
 
We meet Anna and Sasha in the park.  Martha and Sasha learn a poem together and make up moves for it.  They will perform this in school on Wednesday.  It is hilarious.  We have a squabble over our game of rounders, and we abandon the game.  Katy's friend Ella joins us when we get home, and we all enjoy a barbecue in the garden.  It was only a sausage in a bread roll and a chocolate banana, but the girls all loved it.  It sounds like a busy afternoon, but mostly, I had to do nothing because Martha and Katy were both engrossed in playing with their friend.  It is a strange balance of dynamics - add a couple of friends and mum has a good long rest.
 
 
Strictly come dancing night in front of the TV
 
We have had a summer's day, and we are ending it with winter TV.
 
 
May the weather continue ...
 
love Sarah xxxx


Friday, 27 September 2013

Baby Dawson

No walk today
After school drop off, I get a taxi to see Jim and Anna, and baby Isabelle Sarah.  Isabelle is one week old.  Jim and Anna are colleagues of mine from Chorlton High.  Jim was my head of dept.  He is now Assistant Head teacher.  Baby Isabelle looks just like Jim.  Anna is looking very well.  It was great to see them so comfortable as new parents. 

Late sleep
I did not sleep well last night.  Would shortening my sleep in the day help me sleep better tonight?   I postpone my sleep by watching Blade Runner on BBC iplayer.  This was featured in "The Sound of the Cinema", which I have watched over the last few weeks.  It is the story of soundtracks from silent movies to pop music to synthesised music. 
When I do go to sleep, I can't wake up.  I stir at 3 pm.  My conclusion is that in future,  I must just continue to stick to how I feel.  If I need to sleep - go to sleep.

Going out tonight
Dave picked Martha and Katy up from school.  We all go to the bike shop to look at the correct bike size for Martha.  Her bike is too small, even though she thinks it is fine.    Dave has taken the girls to stay with him tonight.  I am going out with some mum friends for a birthday drink for Lisa Watson (Iona's mum).  I don't expect to be out long, but I am very happy to be going out.  I had half a glass of cava with Helen; I might have a couple of shandies tonight.  Basically, I will come home as soon as I start to flag.

Travel Insurance
I have started my travel insurance claim.  I tried to claim for missing Rolling Stones concert - my tickets were with Helen and Gee.  However, my insurance is invalid because I did not have any accommodation booked.
My other claim is for my trip to Herm.  Amazingly, I can claim for my fare changes and Martha and Katy's.  This is great news.  I thought I could only claim for my fare changes.  My insurance company are sending me all the documents to complete. 

Apple Crumble
Issie Tooher and Debra bring round an apple crumble.  I will eat this with Martha and Katy tomorrow.  They have used apples from their garden - always the best!

Have a great weekend.  I hope the weather holds.  I keep imagining it is Spring. 
love
Sarah xxx

Thursday, 26 September 2013

CHS open evening

http://www.youtube.com/watch?v=qOrDu7yd4ws&feature=youtu.be   

This is a video of Katy and Ella at Royal Northern College of Music in July.  I was sent this at a time when I was deeply worried about how Martha and Katy were dealing with my news.  It is so joyous, it still brings a big smile to my face.  I have just worked out how to upload it onto you tube.

Walk
My day yesterday was a walk, a little shop (where I discovered that my new fruit and veg shop takes my tag card, giving me 10% discount).

Longford Park, looking stunning.

I rested most of the day, to prepare to go to Chorlton High School open evening.  Martha has already chosen this school.  The trip was to help Katy decide where she would like to go in 2015 (when I am 50!).  Helen was also coming to join us.

Chorlton High School
Martha and Katy enjoy a chicken pasta that Lisa Watson left us, and then we get ready to go out.  Helen arrives, and we walk to the school on the route that Martha will take next year.  It is up an alley along side Chorlton Park.  I can't help but give guidance that they must not ever walk through the park when it is dark.  It is black dark (I have been through it on my bike) - you really can't see a thing, even with a bike light.

As an ex-employee from the school, I know most of the teachers.  I also know about a quarter of the parents.  CHS open evening is a challenging experience for me.  I feel ok in myself, and I feel very positive.  If I had been returning to CHS with depression, I would have felt completely different; I am comfortable to go back and share the news of my cancer. 

I did try to speak to the head teacher, but I quickly concluded that it was not the right time and place.  I ducked out the queue and took the lift to the maths department (I cannot walk up the stairs).  They were all really happy to see me, and me them.  Helen and I cannot find Martha and Katy.  We agree to do one lap, of this floor, and that I will then wait in the foyer until Helen has found them both. 

They are found in food tech making bread rolls.  Katy makes a plait, and Martha and peaked bun.  We take these to bake at home.  Helen and I have a lovely meal together, and put the bread in the oven.  When we returned to it, both creations were dark brown and burnt.  Oops!

 
 
Martha level 6 group and Katy team leader
 
Tired and exhausted Martha received more good news yesterday.  She is one of six pupils who have been put into a group to work towards level 6.  I have some reservations about this - my instinct is that at primary school she should be focused on the basics and lots of fun - however, we will go with it.  I am delighted for her.
 
Katy has been made a team leader.  Two children per house have special duties to go round the school and collect the points from each class.  She is really proud of herself, and quite rightly.  Katy also has a place in digismart.  Martha did not get into this group.
 
Grab Rail
This has been fitted into my shower.  Only small, it makes a massive difference to my safety and feeling of comfort while I shower.
 
I am sure I will recall more later on.
Enjoy the good weather
love
Sarah xx
 
 
 


Brief update

It was Chorlton High School open evening last night, and Helen joined us.  No time last night to write BLOG.  I will write later.  Just letting you know in case you think my absence is due to illness.  I am not ill, just tired.
seeya later
Sarah xxx

A few other updates:
1)  I have reduced steroids to three quarters mcg per day.
2)  My next appointment with consultant is on 16 October.  This is when I will start next chemotherapy programme.
3)  I have posted letter to my doctor's surgery, asking for my case to be reviewed.

Tuesday, 24 September 2013

Jackie comes for lunch

Early morning for me
Another terrible night of broken sleep, I got up and watched TV for a while.  Up at 6am, I have so many chores before school that I have to make a list.  Martha is going on a school trip - I make a packed lunch.  Katy has bike right - I pump up the tyres on her bike.  I get Martha out of bed to comb her hair for nits.  Three breakfasts made and served.  Martha is upset because she is tired, and fed up with feeling tired.  When we get to school, Martha is crying and we have a talk with her teacher. 

I walk home.  No walk today, because I had fitters coming to install a grab handle in my shower.  When I get home, I have a call saying that they can't make it until Thursday.

I go back to bed.

Later, Jackie Brennan arrives.  Jackie is an old work and hockey pal.  We have a cup of tea, and then head out for a short walk.  On the way back, we head into "on the corner".  This is a local cafĂ© that serves healthy food and drinks.  We are offered raw food - it is raw food day.  I had eaten a lovely bowl of broccoli soup  (this was kindly left on my doorstep by Vicky McAffer, like a pint of milk) before we headed out for a walk; I was not hungry at all.  Jackie opted to try a meal, and I picked a little of it - delicious.  On the corner offer workshops for people to learn to cook raw food - I will book into the next workshop.

I go back to bed.

I am woken by my alarm, and head back to school.  I have agreed to meet Martha at the end of the day to check if she is OK to go for second cross country run.  Katy comes out and asks me to take her bike home and bag.  I sit and wait for Martha.  It takes me some time to realise that Martha has not come out, and I twig that she has already left through another door.  I take bike and bag home, and head to the park to watch the cross country.  I get into the park and see the girls cross country run start.  Martha is really unhappy with her performance.  She is crying and distressed that she didn't get into the final.  She still wants to go to the Girl Guides swimming gala - this is where she is now.  I wait to see how she gets on - I am praying for a win and a smile!  Katy is at Stretford Swimming Club.

They meet their family counsellor on Friday. 

Letter to Doctor's surgery
I sent the letter to my Macmillan nurse.  I have received a reply saying that I should send it as it is, and wait to see their response.  The letter is basic and asking for a reflective review, to see my notes, and asking for some key points to be considered.  I will post this tomorrow.

Lisa Watson has just dropped round a chicken pasta dish.  I am so grateful for this kind of help.


Enjoy the lovely weather
love
Sarah xxx

PS Martha comes home from swimming gala delighted - she has been chosen by her peers as patrol leader.  She remains tired, but this is a great pick-me-up. 
Also, the gala was a play in the pool.  No racing.

Monday, 23 September 2013

Friends from Australia come to visit :)


Bike Right course is tomorrow
Katy wants to cycle to school, and I agree to this.  This means that I cycle to school.  Hmmmm!  I really struggled.  Martha and Katy disappear into the distance as I struggle to get going.  It was not a good thing to try.
 
Tomorrow, Katy starts her bike right course.  This is a course that builds up to what we would know as the old cycling proficiency test.
 
Morning walk
We were a group of three today.  Sarah, Anna and Mike - all parents from Chorlton CE Primary.  We had a really good chat and enjoyed the dewey meadows.
 
Snack and sleep
I have a snack and then go to sleep.
 
Jo Myers visits
 
All you Lufbraites will remember Jo Myers!  We have stayed friends through uni, Jo's emigration, Sydney Olympics, her trips to UK.  Martha and Katy have met Jessie and Charli once before, and the four girls bonded again, instantly.  We have had a lovely evening together, catching up.  Thank you for coming :)  We will go to visit them in Brisbane one day.
 
 
 Jessie, Martha, Charli and Katy

Jo and me, doing "thin arms"  Mine are thin steroid arms!
 
 
Time for me to go to sleep

Martha is very tired:  we have quite a long talk where she is telling me that she does not like being tired.  She is tired all the time.  She doesn't know why.  I don't know why either - is it puberty; is it not enough sleep; stress from my illness; hormonal?  Who knows.  All I can do is listen.  We agree to get to bed earlier and see if Martha feels better.  If no improvement, I will take her to the doctor's.
 
Have a good day
 
love Sarah xxxx
 
 

Sunday, 22 September 2013

Street BBQ

I have another night of being mostly awake.  I get up late at 8.45 am.

Martha and Katy have breakfast, and I have egg on toast.  Katy gets into completing her homework - she has created her world.  If she was Coraline, and crawled into another world, the she would live on a football pitch, with a goal made into a bed; boys wear skirts, and girls wear shorts.  She has a toilet and shower, and sweets are healthy. Her drawing is bright and labelled.  Good work Katy!  Martha has been writing a journal of news.  Her work is very neat and well presented.

Katy making a chocolate banana smoothie.  The smoothie maker has no lid because my mum left the packaging on the train, and didn't notice that she left the lid in it. This makes me smile.  It works, so it is fine.

Martha's friend Lauren comes over to play, and Katy's friend Iona.  They have a great morning together, while I create a proper chicken kiev and sunday roast.  This was my first every chicken kiev, following an online recipe.  I was pleased with it.  The crust was crunchy.  All four children ate everything, even all the sugar snap peas.

I then head up for a sleep.

Dave texts to say he has returned from his holiday.  He heads over to see Martha and Katy, and takes them to swimming club.

Street BBQ
Beautiful BBQ weather, we have a street event.  This is a fantastic place to live - my neighbours are all amazing.
 

Have a good week
love
Sarah xxx

Saturday, 21 September 2013

Warm Saturday

Terrible night's sleep
My sleep was disrupted over and over again by fever, and middle-of-the-night worries about petty issues.  I had to get up for the toilet four times as well.  Paracetemol don't help me settle, but do help my fever.  I wake in the light annoyed because it is time to get up.  I take a bath and wash my hair.

Guinea Pig Cleaning
Martha's school friend, Saskia, comes over to learn about how to clean out a guinea pig.  She is thinking of getting one.  It usually takes only about 15 mins, but today Martha and Katy were showing off, and the clean up took about 2 hours!  They did a thorough job, and Saskia was fully involved at every stage.

Fan Return
A friend of Louise, who loaned me a fan in the hot summer bobbed in to collect it.  I am hoping to see her at Louise's 40th.

Mum and Max
Max brought mum up to collect all her stuff.  She didn't bring the bike because the gears were not working.  I wait to see if the local bike shop can find a suitable bike for Martha.  If not, it may be a trip to Decathalon.  Her knees are up around her ears when she peddles.

Max helps me organise the cellar.  I haven't been in the cellar since May, and I know that it was disorganised down there.  One of the supports for the shelves was missing, so the shelves were wonky.  I had kitchen stuff in camping space, and pictures and posters in the cellar that were meant to be in the bin.  She moved the heavy stuff down into the cellar, that I have not been able to move.  My house now looks a mess again, because space has been opened up, that was hidden away.

Parties
We take Martha to Anya's birthday party.  She dresses in white dungaree shorts, t-shirt, cardi and long boots.  I think she looks fantastic.

Katy goes to play at her friend Lewis'.  When she comes home, she is caked in mud.  They have had a water fight and been sliding in the mud.  The mud is all up her back too.  Immediate shower!

Car Sale
My brother has accepted the offer of my car.  He has partner and 3 children.  My car has optional 7 seats.  We have yet to talk about it further, but I am happy that the car is staying in the family.

Sleep
I sleep while Martha and Katy are at their friends.  I have little walk on Beech Road, but basically do nothing while they are out.

Hoping the weather stays warm tomorrow
lots of love
Sarah xxxx

Friday, 20 September 2013

Learning my limits...

Katy heads off to school early.  I catch her up with Martha, who has slept in my bed again.  She is at that age where she really struggles to get up in the morning.

I have written in Katy's link book a note for her teacher.  She got offered a place in the steel pans, when she wants to learn the trumpet.  I have asked her teacher if she can be reconsidered for the trumpet group.  She has been saving for a trumpet all summer, and when she didn't get a place in trumpet, has asked me if she can pay for lessons instead.  We were hoping the trumpet would help her with her asthma too.

After school drop off, I head off for a walk around the meadows with Anna.  We have a really good chat about everything from holidays with no car, to hair loss.  Anna has shaved her head and posted her hair to the same charity that took Jesse Jay's hair.  I am going to ask Dave to shave my hair and I will do the sore bits.  I can then put gel onto my stinging scalp.

A few jobs. a visit and sleep
I receive my council tax number.  I have thrown away so much paper, I don't have the basics left at all.  I had to write to council to send me the number.  With the number, I can finish Martha's application to secondary school.  I still have to wait for bills to arrive from gas, elec etc to send off my proof of address.

I listen to phone messages and make the return calls to all the health professionals who are helping me.  I leave messages saying that I feel fine and don't need a visit.

Lizzie (old hockey pal) comes to visit, with baby Martha.  I call her "Martha the second".  She is a beautiful baby girl; a third child.  Lizzie is trying to get fit, and has started playing hockey.  We realised that she must live near another hockey friend, Kate, who also lives in Macclesfield.  It was great seeing them.

When I wake, I find that Chris has called (old close friend from uni).

Soup and bread and cheese
I enjoy some bread, soft cheese and soup.  Chris calls, and we agree to talk through me munching. 

Shopping
I have more time today, because Martha and Katy have gone out to play with friends, straight from school.  I then head out to post my letter to France and to pick up a few bits of shopping.  This is where I discover my limits.  I am too tired to complete my voyage to post office and Morrisons and back.  I have to have a rest - I go to Battery Park for a vegetable juice.  I struggle to leave.  What I want to do is lie down and go to sleep.  Motivation is what I have to conjure, to get myself home.  My learning is that if I go for a walk, that is my exercise for the day.

Aubergine and tofu thai curry
After a rest, I make a delicious curry with a Lloyd Grossman sauce.  It didn't take long, and tasted excellent. 

Martha and Katy come home
They are such opposites.  Katy wants to do her homework before the weekend; Martha thinks she can do it another time. 

Here is a picture of Katy, very proud with her introduction to refereeing certificate.  Just like Aunty Bev!  They are similar in looks and interests; Bev is a qualified referee.


Katy has nearly finished her homework.  Martha hasn't started yet ...

Have a good weekend everyone
love
Sarah xxx

Thursday, 19 September 2013

Local shopping

Walk = shopping trip
We have a good morning and get to school early.  I organise one of the lifts that I need for Katy to get to cubs.
My morning walk, today, is to do my shopping.  I take Martha's pink trolley bag with me to school, so that I can use this to carry my shopping.  There is a fruit and veg shop next to Barbakhan (baker and delicatessen), that I have never been in.  It is recommended to me by Anna.  When I go in, I discover a fantastic array of other goods - a small supermarket of Asian food and british basics.  I buy eco friendly cleaning products in Unicorn (vegan delicatessen) and a couple of salads.  I buy fruit and veg and other basics in fruit and veg shop.  I discover on the way home that my usual fruit and veg shop gives 10% discount to local shoppers with a tag pass - which I bought recently.  I buy meat in Frosts, the butchers.
The other part of my trip was that it was sunny when I left.  Leaving home, I am wearing my Herm sweatshirt only.  When in Chorlton it starts to rain, very hard and it doesn't stop.  I have a decaf coffee to wait for it to pass (in the deli) but, in the end, I have to accept that I will get rained on.  I get very wet.

Guitar lessons
At home, I make an early lunch and then head off to bed.  I set my alarm to wake me in time for school pick up.
Martha and Katy's guitar teacher calls to organise their lesson times.  He doesn't think they should be in the same group, and I agree to them being in different timed lessons.  Martha is more advanced in her playing than Katy.  However, I forget that they have booked other school clubs around the time of their lessons from last year.  When the call is over, I remember, and ring him back.  I get an answering machine.  The time of the lessons mucks up both their clubs - Katy can't go to running, and Martha misses most comedy club.  I have to sort this out tomorrow.

Letter to French friends
I wake early, and I do two things.  Firstly, I have a look at Macmillan website.  I find that they do teaching days in schools, so I have enquired about this. 

I then write a letter in English.  I change it into use of verbs that I am comfortable with, and check translation on line.  I write the letter by hand.  I know the French is not perfect, but I am quite pleased with myself.  I have been meaning to do this for months (before diagnosis).  I wrote in French on my BLOG, but I do not think my French pals picked it up,  These are my friends that I met when I was teaching in France, as part of my teacher training.

Home with Martha and Katy
I go to pick up the girls, not really knowing what time they will appear.  Katy has missed running club and appears from guitar.  Martha has managed to do both, to a point and shows up forty five minutes later.  Martha and her friend want to go to the park, so I invite Martine for a cuppa.  I then extend this to share a spaghetti bolognaise.  We have a lovely evening together.

Enjoy the end of the week :)

Wednesday, 18 September 2013

Third time lucky - Ewa the cleaner is great!

Martha has a bad night - she is uncomfortable and poorly.  She gets in bed with me, and wriggles all night.  We both don't get enough sleep.

In the morning, I am up early.  Claire Hinsley-Mo recommended her cleaner to me, and she started at 8am.  Almost immediately, she gets going at a great pace of work.  When I return, after the school run, she continues.  At the end of her first visit, I am delighted by the transformation of my house.  We have a way to go, before it is clean again, but I can see that we will get there.  I manage to clear up a few loose ends too - I go through a pile of papers and throw out loads of paper.  I also discover our War Horse Tickets tucked away in there.  I was lucky to find them!

Macmillan Nurse
My nurse visits at 11am.  We have a good talk about lots of things.  I find him very helpful.  I like the way he approaches our conversation.  I feel comfortable talking completely honestly. 

We talk about my letter to the practice manager at my local surgery.  We agree that my goal is that the surgery reflects on my case and learns from it. 

I do not expect the surgery to discover that they could have made a correct diagnosis sooner.  The hospital have told me many times, that brain tumours are often mistaken for depression.  The symptoms are very similar. 

What I want explored are:
  • the attitude of my GP to me and my case (she was persistently rude to me)
  • the communication between doctors (it appears that there was no communication between doctors that I saw at the surgery - I would like to see a systematic approach that would ensure that doctors share information and possible diagnosis')
  • the views of the student doctor who observed my consultations with both doctors.  One was trying to get me a scan; the other was shooing me out for time wasting.
I will ask to see a copy of my notes.

My nurse has offered to look at the letter to check the language before I send it.  This is very helpful back up to me.

During his visit, Ewa finishes and leaves.  I will text her to say a big thank you.

Off to bed
I have lunch and settle into bed.  I wake to pick up Martha from school.  Katy is at choir.

Martha and I head off to Oxfam to get some birthday cards.  Martha then goes home on her own, with my key, while I go to pick up Katy from school.  Martha is getting so grown up!

At school, I go upstairs to get Martha's bag.  Half way up, I am exhausted - I am out of breath and really struggling to ascend the stairs.  This is a big point of learning for me.  I want to get back to work, but I can't do it until I can get around the school properly.

Tea, Piano and Bed
I manage a more nutritious meal tonight.  It was intended to be chicken kiev, but once the chicken had thawed, I discovered that it was chicken pieces, not breast.  I do chicken strips in breadcrumbs with garlic butter on-the-side, with a baked potato.  No veg - I will add this back in to the menu soon!!!  Katy and Martha liked it in the end. 

Have a good day
lots of love
Sarah :)

Tuesday, 17 September 2013

Cross Country Run (for Martha and Katy)

Walk to school
I walk to school with Martha and Katy.  I wait to talk to the head teacher; my aim is to ensure that the school staff are aware of what Martha and Katy are facing at the moment.  I hope that they start their counselling next week, and that the school is ready to deal with any changes in their behaviour.  I share some aspects of their response to my illness at home.  Their teachers say that they are both doing really well.  They asked if Martha and Sasha were aware that their mums had the same illness, and I said that I thought it was currently one way - that Sasha is aware, and that Martha is not (or isn't showing it).  Sasha gives Martha gifts when she is upset about something.
 
 
Shopping for Martha
I am not up to speed on home duties.  Martha has no tracksuit bottoms, and needs a pair for Cross Country event, today.  I decide that that the best thing to do is get a tram into town and go to Primark to get a pair.  The tram stops outside Primark.  This means that I do not go for my walk, because I do not have much awake time.  Luckily, I get a pair in a shop on the way to the tram, and take them back to school.
 
I also ask if the school knows when the open evening is at Chorlton High School, and we find out that it is next Wednesday.  I send an email to old pal CHS to say that no-one knows about the open evening, and receive a reply that implies that my old colleague will deliver letters tomorrow (if they are ready to go).
 
I go home for a sleep.

 
 
Starting to review my case at Doctor's surgery
 
I am woken by my current doctor at my surgery.  I ask for a prescription of steroids (because I have increased my dose), and this is agreed.  I also ask if there has been any review of my case.  She tells me that they review major diagnoses once a month, and that this meeting has not taken place yet.  I am advised to write a letter to the general manager to ask for the outcome of the review.  I have started to write my letter: 
 
  • Ask for review
  • Outline key dates and appointments
  • Send Anna's transcript of my last visit to surgery (when my GP was extremely rude to me)
  • Remind them that a student doctor was present in my appointments with Dr Sabeti (who was trying to get me a scan), and Dr Black (who was convinced I was depressed and a time waster).
 
 
Cross Country
 
I buy two chocolate brownies on the way to Chorlton Park.  Martha and Katy are both running in the primary schools cross country event.  There are three events and this is the first one.  Both girls run really well.  I think Martha is the first Chorlton CE pupils home, but it turns out one girl, not in school uniform, has just beaten her.  Katy is only a few girls behind her.   This is a photo of them after the race.
 

Martha then heads off to drama, and Katy to swimming.

I cook a lazy tea of pizza.  That is - a heated up frozen pizza. 

Have a good week
love Sarah xxx

Monday, 16 September 2013

"You look normal today, Mum"

"You look normal today, Mum"
Katy said this to me on the way to school.  She then explained that my face looked normal; that the swelling had gone down, around my eye.  This is how I look and feel on 1mg of steroids.  I was going to cut it down to 0.5 mg, but her comment made me realise that I feel much better on 1mg, than on the lower dose.  On the lower dose, my left eye is swollen; I have a headache.  I don't know if I feel well or not, because I was in the last week of my radiotherapy, which would change how I feel.  However, I definitely feel better on 1mg.  I plan to continue on 1mg for now.  When my nurse calls, we will talk about this.

Morning walk
At the school drop off, I give one of my work files to a colleague to give her the work of my spelling group from last year.  She is taking over the group, and I want to make sure she is able to plan continuity from Y4 to Y5.  Katy is in this group too.

I then, bravely, head off for my morning walk.  Rain storms are passing through.  I confidently say that I will do my walk, and if it rains, I will get wet.  This is our rainbow, on the way to school.

Once on my walk, in torrential rain, I decide that I should cut the walk short, and head home in less than two miles.  I was soaked!  I don't mind it being a short walk.  I am happy that I have got going again.

Breakfast, and back to bed...
I have a pleasant cooked breakfast and fall asleep on the settee.  I am woken by a visitor from social services, who has come to assess my house.  He goes through a questionnaire with me, and then has a look around the house.  The only thing that I need is a hand rail in my shower, which he says will be provided and fitted within a couple of weeks.  I have been told this from being in hospital after the operation, so let's wait and see ...

I then go back to bed and sleep until 2.30 pm. 

My only job for the day, has been to collect some ear-rings on the way back from school, and I have taken Martha to local bike shop to ask them to look out for a bigger bike for her (second hand).  Katy has been to football.

My main task for tomorrow is to organise lifts for Martha and Katy to and from local clubs.  When Dave is around, he will reciprocate.

My car
I have realised that I am going to have to sell my car.  I don't have a price yet, but if you know of anyone looking for a car, I have a 2002 Vauxhall Xafira Diesil with optional 7 seats.

Have a good week everyone
love
Sarah XXX

Sunday, 15 September 2013

Getting back to normal

Saturday:  My simple deal with Martha and Katy was that I get as much rest as possible through the day and then I would be able to take them to Croma.  My only duties were to provide meals.  Martha and Katy took themselves out skating, and did quiet activities.  I got to rest and sleep, have a bath and get ready to go out.

Croma (Thanks Lizzie)
The three of us went to Croma to celebrate the end of my radiotherapy programme.  We ate well, and had a really good time together.  Martha and Katy were drawing animals on the table cloth.  Martha drew a dragon's eye that she was really proud of, and has put the picture into her folder.  They were both showing me really clever magic tricks.  We had a great meal together.

Sunday:  Again, I spend most of the day in bed.  I was disturbed by mum friends bringing gifts (I don't get up because I need to rest).  Rosy and Tanya bring round a loaf of bread, that Rosy has made.  It was warm and delicious.  I have never made bread, so I am very impressed.  Vicky (Ella's mum) brought round some ready cooked meals for me to put in the freezer.  I am very grateful for these too - it means that next time I have a bad spell, I can have good meals ready for Martha and Katy.

I pop round to see Anna, while Martha and Katy go to a neighbour's birthday party.  We have new neighbours with a daughter in year 6 at Brookburn, a son in Brookburn, and a son at Chorlton High School.  Martha and Katy are delighted, of course!

Tomorrow:
I plan to go for a walk after taking Martha and Katy to school.  I am hoping to continue walking fitness.  When I am ready, I will start to jog some of it.  Chris and Max - you are going to have to keep up to get ready for 2015 London marathon!

Friday, 13 September 2013

Radiotherapy and chemo finished - next steps

I have finished radiotherapy.  I haven't felt like celebrating yet because of illness.  I am hoping to take Martha and Katy to Croma ( with Lizzie's vouchers) to celebrate over the weekend.

I had my meeting with consultant and this is what happens next.

1)  I take no drugs (except I have been put back on steroids since this meeting)
2)  I return for an appointment with consultant in four weeks.
3)  I get a new chemotherapy regime at this appointment.  I believe it will be 5 sessions per month, in tablet form, 
4)  I have an MRI scan in 3 months to assess my progress.
5)  It is OK for me to start running when I feel up to it.  My consultant did say I had to start small and build up to it, and I told her I have been walking 3 miles every day except for last week.  From this, she said I could get started when I was ready.  I asked about swimming and the answer was no - I have to wait because of the burn on my scalp - I cannot put scalp in chlorinated water.
6)  I have new nurse - Liz Malloy 0161-446-8441

Have a good weekend everyone
lots of love
Sarah xxxx

On the mend

On the mend
I am back on steroids and starting to feel much better again.  I do not like the idea that I am dependent on them.  When you are on steroids your body stops producing its own steroids.  When my steroids have been withdrawn (we have done this twice now), my body is not kicking back in with my own steroids.  I become very ill, as a result of this. 

The illness is difficult to describe.  Firstly, I have overwhelming nausea ( I have taken loads of anti-sickness drugs, so I am worrying a constipation again!).   I managed to avoid being sick, but the journey was unpleasant.  I feel extremely tired.  I cannot sleep properly because my fever is rising and falling.  I am shivering, and then feeling extremely hot, over and over again.  My arms and legs feel lifeless and weak.  I feel ill.  Sitting down, I have my head in my hands and feel very poorly.

I am seen by my nurse, and sent for another blood test, to check for an infection.  The woman who took the blood walked me back to the nurse because she was worried about me.  My nurse does my observations - blood test, pulse, blood pressure, oxygen levels, blood sugar levels (another needle).  A doctor comes to visit, and concludes that the problem is the steroids.  I am given a prescription to continue taking steroids.

I go to my radiotherapy session, which was grim because I feel sick.  I am pinned to the bed, and agree with radiotherapists that I will wave if I need to be relieved due to sickness.  I manage to do the whole session (playing Queen - Jazz).

I have a bite to eat in cafĂ© so I can take the steroids.  Go home to bed and sleep properly for a few hours.

My mum ends up not going home, as planned.  She did leave last night, but sadly will miss my step grandmother's funeral (which is in Cardiff).

I feel a lot better today.  I am still a bit ropy, but improving.  In bed, but brain is now working again!

Thursday, 12 September 2013

very poorly - just starting to come round

Yesterday evening, I became very poorly.  I will fill in all the gaps another time, when I am functioning properly again. 
Doc concluded it is a reaction to being taken off steroids, so I have been put back on them again.

Last radiotherapy session completed today.  I can't recommend being screwed to a bed when you are overwhelmed by nausea!  We had it all set up for me to wave, and the x-rays to be stopped at any time.  I made it!  Radiotherapy completed.

love you all
Sarah x

Tuesday, 10 September 2013

Quiet day 2

Well, it is not quite as quiet as yesterday.  I had exactly the same day up to 3.45 pm.

Dentist
 I then took Martha and Katy to the dentist for a check up.   Neither of them need any fillings (hooray); they continue to clean their teeth well, every morning and every night.

My teeth:  The roof of my mouth is sore, behind my front teeth.  The dentist could not find any infection or cause of this, so we think it is a side effect of my drugs.  I will tell my consultant tomorrow.  I had to have three x-rays, which I did not enjoy at all.

My teeth need a good clean.  However, I cannot open my mouth properly, so I declined this offer.  The dentist is happy to do it, when I am ready.

Grease 1
Vince Kwasnica phoned me for a catch up.  He has six girls aged 10 to 1!  He says they only know if they have lost one, if there is a spare coat...

Swimming
Not me!  I am not allowed to swim, because there is a high risk of picking up an infection at the pool (warm and moist conditions breed germs).

Martha and Katy have started at local swimming club (a drive away).  This was their second session of the week.  My mum took us.  I was very proud of them.  Martha is swimming comfortably with the faster girls, and Katy has beautiful strokes and is holding her own with the rest of the group.

I am eating humous and salad to stave off nausea.  It has passed now.

Also, a few mum's have offered help with lifts, which will be a great help to us.  Dave says he will take Martha and Katy, but I suspect there will be a few gaps.

Grease 2
At home we watch the last twenty minutes of Grease and the girls go straight to bed.

I feel more well than I felt yesterday.  My head hurts, but I have been putting Aloe Vera Gel on my scalp, to help it cool. 

Two radiotherapy sessions to go.

Wishing you all a good week ahead
love you loads
Sarah xxx