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

Monday, 9 September 2013

Quiet day

I find it a challenge to get out of bed and eat my breakfast on time.  My scalp is hurting too.  There is a part of my hair that hurts when I move the hair - it feels like I have banged my head, with force, onto something very hard and firm.  I am thinking I might shave my hair, so that I can put gel onto it, and so that when my bald patch grows back, it is all growing together.  My mum is not keen on this idea!

I walk Martha and Katy to school.  When I get home, I go back to bed and doze for 30 mins. 

Radiotherapy is on time.  We post a couple of parcels on the way home.  I have lunch and go back to bed.

I get up and collect girls from school.

Martha is getting very independent.  She asked if she could walk home with friends, and go to the park.  I agreed.  She is sensible and cautious on the roads.  From now on, she is going to take her phone to school and text me for permission to come home on her own. 

Katy had a lift to cubs, from Anya's dad.  Martha and I watch "Tales from earthsea" - a Japanese, Manga film.  Katy home, and end of film and the girls go straight to bed.

I am in bed, and ready for a good night's sleep.

Have a good day
loads of love
Sarah xxx

Sunday, 8 September 2013

Grace and Margi visit

Mostly in bed
I have spent most of the day in bed.  Martha and Katy have been active on their own or with Dave.  They have been out roller skating, made their own pizzas, they have made a film of Katy dancing, they have been to a party in the park.  Dave has taken them to the swimming club, where they will continue going.
 
 
Martha and Katy at party in the park
Martha and Katy head to the park for a party.  The first photo is taken by Anna, Sasha's mum.  Martha is sitting on sea saw, with Sasha.  The second picture is taken by Daisy, who is a friend of Martha's at school.
 
 
 
 



Margi and Grace
Margi (sister in law) and Grace (niece) come over to visit.  They have been on holiday to Florida, and had a great time away.  Grace has just started secondary school and is settling in well already.

I am in bed when they arrive, and can't get up - I have to stay there until I am ready.  Grace goes to the park to find Martha and Katy.  I have a good chat with Margi.  We both go to the park, and I come home again to go back to bed. 

Wishing you all a great week.  I am in week 6 of my radiotherapy programme.  Radiotherapy ends on Thursday.  I find out on Wednesday what happens next.  I know I will continue chemotherapy, but I don't know how.    I am looking forward to not having to go to Christies every day of the week.

lots of love
Sarah xxx

Saturday, 7 September 2013

Sluggish again this morning.  I get up and have breakfast, and then go back to bed.  I don't get up until 9 am.  I have a bath and dare to wash my hair.  It is full of gel.  My mum makes me early lunch, and I make lunch for them.  I then go back to bed!
 
Martha and Katy at parties
 
Katy goes to a Forest School party, for Abbie's 9th birthday.  They build a den in the woods within the meadows.  Late afternoon, Katy takes me to look at the den.  I was very impressed that she found it, because she chose the wrong route, and came into it backwards.  Here she is with a can of pop and a nan bread.
 
While Katy was at the party, I was asleep and Martha did her homework.
 
Martha heads of to Saskia's 10th birthday.  Saskia is ten at the end of August.  Yesterday, she attended Anna's 11th birthday - Anna is eleven at the beginning of September.  Martha has been hamster balling in the local pool.  She comes home very tired, and goes straight to bed.

I have been dozing on the sofa, and now I am ready to sleep again.

I love you all
Sarah xxxx

Friday, 6 September 2013

Sleepy day

I struggle to get up this morning.  I have to get up early to have breakfast.  If I stay in bed, I cannot eat, and I am likely to become sick.  I have to talk myself out of bed, and coach myself through making porridge.  I eat half of it and go back to bed (full of pills of course!).

I get up to take Martha and Katy to school.  Luckily, they have both been self sufficient in getting ready for school.  When I get home, it is time to go to Christies.

My scalp is really painful.  It has woken me many times in the night.  I cannot sleep on my left hand side - the sharp pain is unbearable.

Radiotherapy appointment is fine.  I have my ipod back on David Bowie Album. I didn't fancy the Famous Five again!  I need to synch it with my PC, but iTunes is not working correctly on my PC; I haven't synched it, in case I lose everything off the ipod.  Most of my tunes "cannot be found" on my PC.

Mostly for the rest of the day, I have been asleep or lying in bed.  I have picked Katy up from school, and my mum drove me to pick Martha up from a party.

A maths friend of mine from Chorlton High (Anna) came round today.  I completely forgot about this - I wrote my BLOG last night, and missed this out.  Short term memory?  Or simply tired?  I think this is just me being tired.  She is 39 weeks pregnant.  She looks amazing - slim, fit and well - with a giant bump, of course.  It was great to catch up.  Thanks also for the aromatherapy candle - I will enjoy it.

I have been in tears a few times.  It never feels connected to anything, even though I know what is going on.  I plan to start a timetable for after the radiotherapy.   Here are some initial thoughts:

1) Polates classes
2) My  morning walk (after drop off at school).
3) Time to research volcano trip
4)  Time to write outline for my book
5)  Other stuff like read, watch film, dressmaking.

Max, Chris (running mates for 2015 London Marathon), I saw in "The Week" that someone has planned marathons that go past live volcanoes.  Fancy it?   (only joking)

love you all
Sarah XXXX

Thursday, 5 September 2013

Burnt scalp

New Sweatshirt
Look what arrived in the post from Ed (old uni friend) - a Herm Island sweatshirt.  Fantastic, thanks.
 
 
Walk to school and off to Christies
I walk Martha and Katy to school, have a lie down and then head off to Christies.  I am very tired.  I am falling asleep in the waiting room - I sit with my head resting on the wall.  My eyes are closed and I am drifting off.

In my appointment, I am told to get aloe vera gel from Holland and Barratt, and to start moisturising my bald patch.  When I try this, I realise why I have not been troubled, so far, by scalp pain; a large part of my scalp is completely numb.  It is burnt, but I can't feel it.  I have started using the gel to ease the stress it must be under.

Lunchtime sleep

Visit by Macmillan Nurse
My Macmillan nurse is called Andrew Evans.  This is his second visit.  He is very easy to talk to, so I enjoy his visits.  He has that special skill of asking exactly the right question at the right time.  I find myself talking about things that I would say I haven't even thought of.  I have worked out that until this week, I have been comfortable dealing with all the things that I have to do.  I have planned for my possible death, I have attended appointments, radiotherapy, chemo etc etc.  My radiotherapy programme is coming to an end, so my thoughts are moving on.  I do not know what happens next.  I have been told I am responding well, but I don't know what this means.  I know I have cancer and I have started to worry about its progress.  I have started to become very tearful at times, and we both think that this is me coming to terms with my condition.  I have cancer and that is nothing that anyone ever wants to say.  It is certainly something that nobody wants to know.

Don't worry.  I am not down, or depressed.  I am moving through the grieving curve.  I am slipping  out of denial and into anxiety.  Next stop will be acceptance; when this will happen, I don't know. 

Through this BLOG, I am sharing, honestly, my progress in dealing with my diagnosis.  I was diagnosed at the end of June, and it is only the beginning of September - I was diagnosed only two and a half months ago.

I go to school to pick up Martha and Katy
This is my first pick up, this term.  They are both excited to see me, which is lovely.  After the pick up, I am a wreck again.  I will have to think this through for next few weeks. 

Both Martha and Katy have behaved really well today.  We all agreed that they have to respond to requests immediately, and not after five or six times of asking.  Martha has done this perfectly tonight, and Katy (who is getting stickers) gained two stickers tonight.  Katy went to sleep without a hug tonight, which is amazing.  Katy has also agreed to move back into Martha's room, so that my mum can have a bed.

Sickness
I have suffered from nausea this evening.  I took a second ondansatron tablet, which took away the nausea.  I am now fretting about getting constipated.  Wish me luck tomorrow!!

Have a good evening
loads of love
Sarah xxx

Wednesday, 4 September 2013

beautiful cobwebs

After my chemotherapy panic, I take Martha and Katy to school.  Martha is very upset and feeling like she cannot settle into school.  She doesn't feel well, and she cries all the way to school.  We see her teachers, who are happy to help her.  We agree that they can phone me, if she needs to come home.  I do not get a call.

Old Sport England and Youth Sport Trust pal, Barbara Wilson joins me for my walk.  This was our point of beauty on today's walk.  After the fog had lifted, the cobwebs were holding droplets of water.  The paths were lined with sparkling decorations. 

After a good chat, I head off to bed and sleep through to lunchtime.

My afternoon appointment goes well, except that I put my ipod on random, and it was playing me a chapter from Enid Blyton's  Famous Five.   I will stick to albums from now on!

My appointment with consultant goes well, and I get home in time for 4.30 pm piano lesson.  Martha is learning to play Fur Elise (Beethoven).  I learned this when I was being taught piano.  Katy has been practicing so much, her music is sounding very pretty.

My mum cooks me tea, with a potato omelette.  I am then able to cook tea for the girls and my mum! 

Katy is very difficult tonight.  I have to set up a sticker system for her tomorrow, to help her focus on good behaviour.

lots of love to you all
Sarah xxx



Chemotherapy tablets

I am an intelligent person.  However, I have discovered today that I have mucked up my chemotherapy programme.  I have talked to my specialist nurse (I was in tears), who says not to worry, because I have taken some drugs every day.

If you recall, I picked up a repeat prescription yesterday.  There were two chemotherapy tablets: one 5mg and one 140mg.  In sorting out my bag of drugs, I discover that I had been prescribed two tablets all along.  I was not aware of this.  It does not say it on any label anywhere, that there are two bottles of chemo drugs to take.  I feel completely stupid.

What has happened is that I have taken one tablet each day.  Some days this has been 140 mg and some days it has been 5 mg.  I have run out of 5mg tablets and have eight 140 mg tablets left.  How I wish I had run out of 140mg and not 5mg!

Now, I must take the full dose until the end of my radiotherapy programme.  My nurse says the radiotherapy is the main form of treatment right now.

I am worried that this will make me feel sick.  Although, my mum rightly points out that my sickness has corresponded with my eating programme, and definitely does not correlate with when I was taking the 140mg tablet, because I would have been sick for much longer periods of time.  I have to let this worry go (or I will make myself feel sick).

I go to see my consultant today (with my nurse).  We will get organised again!

Meeting with consultant - good
I met with my consultant this afternoon. She was completely positive about my chemotherapy situation.  I have attended all the radiotherapy appointments and I am responding well to treatment.  I did not ask what this means - I will do this another day.  I remain on chemotherapy for another six months.  I have been taking chemotherapy every day.  They are very happy with me. 

They concluded for themselves that it would be good to feed back to the pharmacy that tablets that come in two separate bottles should be marked as "part" or "1 out of 2".  If this had been the case, I would have known to take two tablets and not one.

All is well.  Phew!

Steroids
I told my consultant about my headaches and swelling around my eye.  With this information, she has asked me to continue to reduce the dose.  I go down to half a milligram.

Tuesday, 3 September 2013

Very tired today


Martha and Katy go back to school
Here they are, ready to go at 8.35 am.  Martha has wet hair because I have had to do another nit check, to make sure she is not passing them on to her classmates.  She didn't want me to dry her hair.



No morning walk
I have to rethink my walking times.  I won't be able to go out in the morning, because I will be helping Martha and Katy get ready for school.  I can go on Wednesday because I have an afternoon appointment at Christies, but all the other days, I have to get to Christies by 10am.  If I don't manage to walk properly until the end of my treatment, it isn't that long until I can drop the girls off at school, and walk immediately afterwards.

Radiotherapy on the tram
Another good trip.  I am very tired now, but my fitness is good.  I cannot explain very well how I feel.  I have good cardio vascular fitness, but I feel very tired.  I want to lie down and sleep.  My eyes are dry. 

I also look like a cancer patient.  I don't like to see my reflection at all.  I am steroid puffy.  I have a bald patch.  I am wearing a scarf.  (At school today, a parent from Martha's class came and asked me if I was alright.  I am always amazed when I find someone who has not heard my news.  I share what has happened.  She says that my face looks different, and that I am wearing a scarf - this made her come and talk to me.)

All this aside, my appointment is early (hooray!).  I collect a prescription, which I don't understand at all.  All my tablets have changed in quantities and times.  I have to organise this tomorrow.  I will not make the mistake of mixing up the bottles again!!!

I have a blood sample taken.  I still hate it!  This time it did not hurt.

An afternoon sleep
I sleep for two hours.  Dave arrives to take me to Beechwood Cancer Care Centre for what I think is the start of counselling.  However, it turns out to be admin and preparation for sessions that start late October.  I can only go, if I can get a lift there and back.  The centre is in a small estate in Stockport, and public transport is not an option.  If I make it, I get a series of treatments eg aromatherapy, reflexology, reiki;  I also get weekly counselling and the opportunity to be part of a group.  There are six weeks of sessions.  I am not sure if I want to be part of a group; for now, I don't want to know about other people's thoughts and fears.  Also, I am hopeful that I may be returning to work at half term, although this could be organised around the weekly sessions.  Let's wait and see.

I have an evening lie down too.

Martha's shoes don't fit!
Martha has D width feet.  On the way to school, her E width shoes lift off at the heel, and she is struggling to walk in them.  On the way home from Beechwood, Dave pops into Clarks to get some insoles.  Fortunately, these help Martha fill the space, and her shoes are fitting her much better.

Evening reading
We get back into old routine of evening reading.  I am struggling, but doing my best to listen and read to them separately.

My mum arrives, which is good because I will have more help again.

Loads of love to you all
Sarah XXXX

Monday, 2 September 2013

Being a Mum in bed :)

No walk this morning
I didn't go for a walk this morning, because I had a busy day ahead of me (I thought).  I realised when Chris texted me that I did not have the appointment in the afternoon that I thought I had; it is tomorrow afternoon.  I go to the cancer care centre tomorrow afternoon to start counselling.

Martha and Katy go out with Lily, Polly and Daisy
They are all going to see Percy Jackson and the sea monster. 

Appointment on time
I go to my radiotherapy appointment on the tram.  Every day that I get on the tram, I am in awe of it.  It is so good to be able to travel so quickly across Manchester and be so close to where I would like to be. 

At my appointment, I completely forget to tell them about the headaches.  I will do this tomorrow.  I do manage to track down my nurse for a repeat prescription.  On the way out, I find the benefits advisers and get some help with looking at benefits.  At home, I call Manchester City Council and find out the information on the previous page.

I have a long sleep.

Cleaner appointed
At 3pm a cleaner arrives for interview.  She is a friend of Jools.  I haven't see her clean yet, but I a comfortable to have her in my house, and content that she understands that I could be ill, or sleeping or resting etc.  We have agreed to work it out as we go along. 

Martha and Katy get ready for school - I am in bed again
This has been an interesting piece of parenting!  I had to go back to bed for a lie down.  Martha was watching TV, and Katy eating pizza (they had a v.low quality meal tonight).  Katy has just finished cleaning out the guinea pigs for a pound pocket money.
I end up ringing them up from upstairs.  From my bed, using the phone from time to time, I have been able to get Martha to finish her homework, and get Katy ready for school tomorrow.  It has been hilarious, but it has worked.  In between, I have been dozing.

Martha has done a good job of her homework too.  It is a family tree, decorated like a Union Flag, with a border of facts about our family.  It is bright and interesting to look at.

Katy's homework is a scrapbook of her summer activities (Hannah, she used the scrap book that you gave her, thanks).  She also has one separate photo of her jumping from the harbour, in Herm.  These are her two favourite snaps.



Bed time again!

Wishing you all a great day.  loads of love, Sarah xxxxxx

Benefits 1

I found someone to help me with this today, at The Christie Hospital.

I have phoned Manchester City Council to find out when I went on to half pay.
Cutting a long story short (and a lot of waiting time on the telephone):

I have been on half pay since 18th August 2013.
I am also on statutory sick pay.

Until 15th December (if I do not return to work) I receive the equivalent of full pay.

On 15th December MCC send me an SSP1 form, which allows me to claim incapacity benefit.

No need to worry about anything right now.  I have just got to tighten my belt (which I am working on).

Job done for now.  Phew!

Not eligible for FSM
The benefits adviser tells me that I am not eligible for Free School Meals, so no need to complete that form.

Sunday, 1 September 2013

Getting headaches but on good form

 
Medium walk
 
Martha and Katy are in bed, so I have a medium length walk, and leave them a note to let them know I will be back by 8.30 am.  My walk usually takes an hour and ten mins or more.  It takes me 45 minutes.  I return home with two chocolate croissant, which the girls devour with excitement.  My only regret was that I spent on croissant and not a Sunday paper.
 
Martha's friend Sasha and my friend, Anna arrive at 9.15 for a play and a cuppa.  Anna and I catch up on holidays, our treatments, and healthy food.
 
 
Katy and Martha go Kayaking
 
At lunchtime, Vicky, Jamie, Ella (Katy's friend from school) and Hattie (sister of Ella) take Katy on a Kayak trip as a birthday present to her.  Here is a picture of them all about to set off.  They were due home by 4pm and at 6,15 pm, I call to find out where they are.  I have been asleep and resting throughout the afternoon.   It turns out that there one and a half hour outing became three and a half hours!  Great for the children, but murder for the paddling parents.
 
 
Martha and Katy work on their homework
My poor girls have had no time at all to do their homework.  Every day they have been going to someone's house to play, and their lives have been rushed over and over again.  The holiday is nearly over, so we have had to focus our time to help them finish.  Martha is drawing a family tree; Katy is making a scrap book of her summer holiday.  I have printed out photos with Katy, during the morning after Anna had left.  They are both doing very well.
 
Also, Martha had decided to go to Chorlton High School and has declined opportunity to take 11+ for Stretford Grammar School.  Dave and I are both happy with this decision.  She wants to become an actress, and CHS is a performing arts college, with lots of opportunities for her to develop her performance skills.
 
School on Tuesday
I am sure you will all understand that I will be relieved when Martha and Katy are back in school.  I will not have to arrange any childcare for a while, I hope.  This is my first year when I have not had to get ready to go back to school myself.  I haven't been able to stop myself getting a new diary, well-done stampers, new shoes etc etc.  I hope to be back at work in some fashion after half term.
 
My health
I am definitely feeling more tired.  My daytime sleep is longer, and I continue to need rest when I am awake.  I have a mild headache in brain tumour area.  I am not sure if I need to tell anyone, so I will have to tell someone tomorrow.  I know the headache is the result of swelling in the brain, due to reduction in steroids.  I have swelling around my left eye that is recurring too.  I don't like it at all.  Katy took my picture for her iPOD, and I still look like a cancer patient - I am steroid-puffy.
 
But, don't forget, that I am walking 3_ miles every day, and able to get to hospital on my own by public transport, so all is pretty good really.
 
My mum comes back on Tuesday night, which will help me as the week progresses.  9 appointments to go - I am in the middle of week 5.
 
lots of love to you all
Sarah xxx