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

 

 

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

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

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

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 :)

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 :)

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

"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

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!

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 café 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!

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

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

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

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

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

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

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