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.
Wednesday, 4 September 2013
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
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.
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
Saturday, 31 August 2013
Much better day today
Morning Walk
A beautiful walk in the sunshine. I leave feeling a bit nauseous, taking an anti-nausea pill. My stomach settles and has been fine all day. Here are some snaps from my walk - the twist into Autumn is changing my view every day.
Apple tree - there are lots. The apples are starting to look ripe.
Berries that are blooming. Any idea what these are?
Jools comes to visit
It was great to catch up with old uni friend, Jools. We met by chance some years ago in Sitges, in Spain (where Helen used to live and spends her birthday there each year) when Martha was a baby. I didn't have Katy then. I am now not sure if I have the story correct - Jools, please correct me! Jools has given me a health promoting drink and a special "green food" supplement. They are downstairs, so I can't write what they are called - I will amend this.
I have a bite to eat, and then head for a good sleep. My sleeps are getting longer - they now average two hours a day.
A little shopping trip to Chorlton
I have no radiotherapy appointment. Hooray! Martha and Katy are still with Dave, so I head into Chorlton to buy Katy some school PE shorts, and a few bits and pieces. I drop off a bag load of goodies at the NSPCC charity shop and then I have a juice at battery park that is full of ginger that leaves a very pleasant sensation in my mouth. I copy down their recipes, planning to duplicate some of them.
I finish sewing name labels in Martha and Katy's school clothes. I am much better at coordinating my hands; I think this is because my steroids have been reduced. The last time I did it, I had to give up, frustrated. We are now ready for school. New cardis, new shirts, new shorts (Katy), new trousers (Katy), PE kit and then old gear eg. Martha's skirt still fits.
I have also pottered about a bit. I have started an application for Free School Meals. I need help with this from someone who is an expert in working with people with cancer, but my salary is halved from tomorrow and very low! I shall be applying for other benefits, when I get some help. The forms are designed for people who are in a long term state. For the application, I have found out my new salary and printed a copy of my Child Tax Credit award for 2013 - 14.
Martha and Katy are due home any time
Have a great day tomorrow
loads of love
Sarah xxx
A beautiful walk in the sunshine. I leave feeling a bit nauseous, taking an anti-nausea pill. My stomach settles and has been fine all day. Here are some snaps from my walk - the twist into Autumn is changing my view every day.
Jools comes to visit
It was great to catch up with old uni friend, Jools. We met by chance some years ago in Sitges, in Spain (where Helen used to live and spends her birthday there each year) when Martha was a baby. I didn't have Katy then. I am now not sure if I have the story correct - Jools, please correct me! Jools has given me a health promoting drink and a special "green food" supplement. They are downstairs, so I can't write what they are called - I will amend this.
I have a bite to eat, and then head for a good sleep. My sleeps are getting longer - they now average two hours a day.
A little shopping trip to Chorlton
I have no radiotherapy appointment. Hooray! Martha and Katy are still with Dave, so I head into Chorlton to buy Katy some school PE shorts, and a few bits and pieces. I drop off a bag load of goodies at the NSPCC charity shop and then I have a juice at battery park that is full of ginger that leaves a very pleasant sensation in my mouth. I copy down their recipes, planning to duplicate some of them.
I finish sewing name labels in Martha and Katy's school clothes. I am much better at coordinating my hands; I think this is because my steroids have been reduced. The last time I did it, I had to give up, frustrated. We are now ready for school. New cardis, new shirts, new shorts (Katy), new trousers (Katy), PE kit and then old gear eg. Martha's skirt still fits.
I have also pottered about a bit. I have started an application for Free School Meals. I need help with this from someone who is an expert in working with people with cancer, but my salary is halved from tomorrow and very low! I shall be applying for other benefits, when I get some help. The forms are designed for people who are in a long term state. For the application, I have found out my new salary and printed a copy of my Child Tax Credit award for 2013 - 14.
Martha and Katy are due home any time
Have a great day tomorrow
loads of love
Sarah xxx
Martha and Katy become radiographers at Christie Hospital
No Morning Walk today
I get up for 6 am breakfast (I have to eat at this time, so it is 4 hours before my appointment time). I am very tired. I don't know if it is as a result of busy day on Thursday; because my steroids have been reduced again, or because it is that time in my radiotherapy cycle. Whatever the cause, I decide to go back to bed. Katy gets up at 8.45 am, and I rise too.
Martha and Katy come to Christie Hospital
Dave takes us all to Christie's. I have arranged for Martha and Katy to come into the radiographer suite to have a look at where I go each day. They are looked after incredibly well. We have to wait for the appointment, but when we go in, the girls become assistant radiographers. I learn things that I didn't know too.
They are shown the machine (and I see this for the first time too). It has a special filter that ensures that the shape of the x-rays matches the shape of the cancer cells in my brain. When you look at the middle of the circle, it is a strange jaggedy shape.
There are also green rays that are projected from the walls across me. They line these rays up with the red spots and make sure that I am completely straight. I am then moved and lined up with green spots, and these put me in the correct position for the x-rays.
Martha and Katy both help put on my mask, and clip me into it. They are then guided and allowed to move me into the correct position, by pressing buttons.
They all leave for the first phase, and then all return to move me for the next set of x-rays. In between time, the girls have stayed with the radiographers and looked at me on a TV screen. Martha and Katy stay with the radiographers all the way through, to moving me down and unclipping my mask.
When we leave, Katy is full of questions and comments. Typical for Martha, she doesn't say anything. I will find out how she felt about it in her own time.
Home for a sleep and ongoing tiredness
I have lunch and go to bed. I sleep for nearly two hours. My day time sleeps have definitely got longer. Martha and Katy are out with Dave.
An old NCT (National Childbirth Trust) friend of mine (Jo) came to visit, and we had a good catch up. She has moved Birmingham, so we won't see each other again for some time. It was great to see her.
I eat a couple of wheat free, sugar free cakes that I was given by Vicky (Ella's mum). They are soft, moist and very tasty.
Nausea and tiredness
As the day progresses I become nauseous (nothing to do with the cakes!!). I go upstairs and lay down, and decide the best thing to do is take anti-nauseous pills and try and sleep it off. I end up sleeping from 7 ish through to 6 am (apart from a couple of toilet breaks). I am not sure how I feel now. I still feel very tired, and I don't know yet about the nausea. I will have to make sure I eat plenty of fruit today because the anti-nausea drugs bung you up!
Have a good day everyone
love
Sarah xxxxx
I get up for 6 am breakfast (I have to eat at this time, so it is 4 hours before my appointment time). I am very tired. I don't know if it is as a result of busy day on Thursday; because my steroids have been reduced again, or because it is that time in my radiotherapy cycle. Whatever the cause, I decide to go back to bed. Katy gets up at 8.45 am, and I rise too.
Martha and Katy come to Christie Hospital
Dave takes us all to Christie's. I have arranged for Martha and Katy to come into the radiographer suite to have a look at where I go each day. They are looked after incredibly well. We have to wait for the appointment, but when we go in, the girls become assistant radiographers. I learn things that I didn't know too.
They are shown the machine (and I see this for the first time too). It has a special filter that ensures that the shape of the x-rays matches the shape of the cancer cells in my brain. When you look at the middle of the circle, it is a strange jaggedy shape.
There are also green rays that are projected from the walls across me. They line these rays up with the red spots and make sure that I am completely straight. I am then moved and lined up with green spots, and these put me in the correct position for the x-rays.
Martha and Katy both help put on my mask, and clip me into it. They are then guided and allowed to move me into the correct position, by pressing buttons.
They all leave for the first phase, and then all return to move me for the next set of x-rays. In between time, the girls have stayed with the radiographers and looked at me on a TV screen. Martha and Katy stay with the radiographers all the way through, to moving me down and unclipping my mask.
When we leave, Katy is full of questions and comments. Typical for Martha, she doesn't say anything. I will find out how she felt about it in her own time.
Home for a sleep and ongoing tiredness
I have lunch and go to bed. I sleep for nearly two hours. My day time sleeps have definitely got longer. Martha and Katy are out with Dave.
An old NCT (National Childbirth Trust) friend of mine (Jo) came to visit, and we had a good catch up. She has moved Birmingham, so we won't see each other again for some time. It was great to see her.
I eat a couple of wheat free, sugar free cakes that I was given by Vicky (Ella's mum). They are soft, moist and very tasty.
Nausea and tiredness
As the day progresses I become nauseous (nothing to do with the cakes!!). I go upstairs and lay down, and decide the best thing to do is take anti-nauseous pills and try and sleep it off. I end up sleeping from 7 ish through to 6 am (apart from a couple of toilet breaks). I am not sure how I feel now. I still feel very tired, and I don't know yet about the nausea. I will have to make sure I eat plenty of fruit today because the anti-nausea drugs bung you up!
Have a good day everyone
love
Sarah xxxxx
Friday, 30 August 2013
England Women win the Ashes
What a great summer of sport!
Andy Murray - Wimbledon
Chris Frome - Le Tour de France
Men's ashes - Cricket
Women's ashes - Cricket
Silver in the Euro Hockey
Have I missed anything?
Andy Murray - Wimbledon
Chris Frome - Le Tour de France
Men's ashes - Cricket
Women's ashes - Cricket
Silver in the Euro Hockey
Have I missed anything?
Long and busy day
Morning walk
I took a medium length walk today, simply because of time. I had an early hospital appointment. Martha and Katy got ready to go out for a play with friends. Martha left with Heather (Anya's mum) on bikes, and Katy took her skates to Ella's.
Katy and Ella on their day out.
I sleep after my appointment, and then get a text asking if Karen Meenagh (Y4 teacher at Chorlton CE can visit). I take my own advice and say that I won't be in, but could I cadge a lift, which she kindly gives me.
Orthotics Appointment
You may recall that I have a lump on the bottom of my left foot, from an old camping injury. I return to the doc with correct shoes (from Clarks), and today, he made me orthotics. These put my foot into the correct position, so that little pressure is place on the lump.
Martha and I walk round to get the bus home, and the timing is perfect for us. I am delighted that we have made it at all, never mind the speed of the trip.
Chicken Korma
Katy is out for tea, so Martha chooses Chicken Korma for hers. Katy hates it! I rustle up a chicken Korma using Lloyd Grossman ready made sauce. These are always full of good ingredients, so I feel happy with the short cut. Martha goes to local Indian take away to buy naan bread. She really enjoys her meal.
During the meal, Margi calls and I promise to phone back. I don't manage this in the end because ...
Cleaner arrives for interview
Helen and Sally are helping me by giving me a cleaner once a week. This is going to be a massive help. Already, I can see the difference it will make.
When I say she arrives, she catches a bus and gets off in Didsbury. I get a call, and I think she is in Chorlton, but she is in Didsbury. Her English is so poor, I ask to speak to someone who can speak English, who puts her on a bus back to Chorlton. In Chorlton, she calls me and says she is at bus station, and she puts the phone down because she has no credit. I am not impressed at this time!
I end up walking out to the bus station to see if I can find her. We have no way of knowing who is who, however, amazingly we find eachother.
So, here I am a morning later, with a very clean kitchen. I will wait and see how she gets on. My aim is to use the cleaner that already works in two houses on my street. She cannot fit me in yet.
Anna Karenina
During Martina's cleaning session, we all watch Anna Karenina. A beautiful love story. Katy is very difficult at the start of it, but settles down.
By the end of the film, I am simply exhausted. I have had a busy day for someone who is fit, never mind someone who is living with a serious illness.
Have a great day
love
Sarah xxxx
I took a medium length walk today, simply because of time. I had an early hospital appointment. Martha and Katy got ready to go out for a play with friends. Martha left with Heather (Anya's mum) on bikes, and Katy took her skates to Ella's.
I sleep after my appointment, and then get a text asking if Karen Meenagh (Y4 teacher at Chorlton CE can visit). I take my own advice and say that I won't be in, but could I cadge a lift, which she kindly gives me.
Orthotics Appointment
You may recall that I have a lump on the bottom of my left foot, from an old camping injury. I return to the doc with correct shoes (from Clarks), and today, he made me orthotics. These put my foot into the correct position, so that little pressure is place on the lump.
Martha and I walk round to get the bus home, and the timing is perfect for us. I am delighted that we have made it at all, never mind the speed of the trip.
Chicken Korma
Katy is out for tea, so Martha chooses Chicken Korma for hers. Katy hates it! I rustle up a chicken Korma using Lloyd Grossman ready made sauce. These are always full of good ingredients, so I feel happy with the short cut. Martha goes to local Indian take away to buy naan bread. She really enjoys her meal.
During the meal, Margi calls and I promise to phone back. I don't manage this in the end because ...
Cleaner arrives for interview
Helen and Sally are helping me by giving me a cleaner once a week. This is going to be a massive help. Already, I can see the difference it will make.
When I say she arrives, she catches a bus and gets off in Didsbury. I get a call, and I think she is in Chorlton, but she is in Didsbury. Her English is so poor, I ask to speak to someone who can speak English, who puts her on a bus back to Chorlton. In Chorlton, she calls me and says she is at bus station, and she puts the phone down because she has no credit. I am not impressed at this time!
I end up walking out to the bus station to see if I can find her. We have no way of knowing who is who, however, amazingly we find eachother.
So, here I am a morning later, with a very clean kitchen. I will wait and see how she gets on. My aim is to use the cleaner that already works in two houses on my street. She cannot fit me in yet.
Anna Karenina
During Martina's cleaning session, we all watch Anna Karenina. A beautiful love story. Katy is very difficult at the start of it, but settles down.
By the end of the film, I am simply exhausted. I have had a busy day for someone who is fit, never mind someone who is living with a serious illness.
Have a great day
love
Sarah xxxx
Wednesday, 28 August 2013
Afternoon appointment quick and better mood
Morning Walk with David Gillon
David Gillon (Chorlton CE Teaching Assistant) arrives at 7.15 am for a walk. We complete my old run, walking of course, chatting all the way.
Home with Martha and Katy for the morning. We have to have another nit check, with potion today. I have struggled all summer with nits. I cleared the girls and left them on holiday with my mum, with potion. When they come home, they have not been checked at all and Martha has a farm in her head. I clear her of nits. They go to stay with Dave's mum, who kindly checks them once but Martha comes home with nits. I have checked them every two days since, and I am exhausted by it... I have had to check myself too, which is a nightmare because my scalp is burnt and my hair is falling out.
Martha's skates arrive, so the girls go our skating, while I have a sleep. My sleep ends up being and hour and three quarters.
Hospital Appointment is early
This has never happened! I am called in for my appointment early, and then have appointment with doctor immediately after it. I don't even read one page of my magazine.
Doc was happy with progress. I must continue to reduce my steroids to 1mg for the next coming week. If it isn't working, I must let them know, and continue on 1.5 mg.
At the end of appointment we leave the hospital at a time that would have been during my appointment, if you understand what I mean. We are able to stop off at Unicorn on the way home and stock up.
Evening tea
To go with basic tea of sausages, egg and beans, Katy makes blueberry yoghurt ice cream (which was delicious), and Martha makes sponge lollies. Both fantastic!
My mood has improved
I received a facebook message from Gavin McCarthy, last night, so accepted him as a friend. He had heard a rumour ... I have replied, and he has had a look at the BLOG. I am still laughing at his comment about Melody (my wig). 1) He was surprised that there wasn't a pink wig in the collection that I tried on. 2) This has me howling, "Do you spray Melody with Harmony". I can't stop laughing at this.
Have a good evening everyone
love
Sarah xxx
David Gillon (Chorlton CE Teaching Assistant) arrives at 7.15 am for a walk. We complete my old run, walking of course, chatting all the way.
Home with Martha and Katy for the morning. We have to have another nit check, with potion today. I have struggled all summer with nits. I cleared the girls and left them on holiday with my mum, with potion. When they come home, they have not been checked at all and Martha has a farm in her head. I clear her of nits. They go to stay with Dave's mum, who kindly checks them once but Martha comes home with nits. I have checked them every two days since, and I am exhausted by it... I have had to check myself too, which is a nightmare because my scalp is burnt and my hair is falling out.
Martha's skates arrive, so the girls go our skating, while I have a sleep. My sleep ends up being and hour and three quarters.
Hospital Appointment is early
This has never happened! I am called in for my appointment early, and then have appointment with doctor immediately after it. I don't even read one page of my magazine.
Doc was happy with progress. I must continue to reduce my steroids to 1mg for the next coming week. If it isn't working, I must let them know, and continue on 1.5 mg.
At the end of appointment we leave the hospital at a time that would have been during my appointment, if you understand what I mean. We are able to stop off at Unicorn on the way home and stock up.
Evening tea
To go with basic tea of sausages, egg and beans, Katy makes blueberry yoghurt ice cream (which was delicious), and Martha makes sponge lollies. Both fantastic!
My mood has improved
I received a facebook message from Gavin McCarthy, last night, so accepted him as a friend. He had heard a rumour ... I have replied, and he has had a look at the BLOG. I am still laughing at his comment about Melody (my wig). 1) He was surprised that there wasn't a pink wig in the collection that I tried on. 2) This has me howling, "Do you spray Melody with Harmony". I can't stop laughing at this.
Have a good evening everyone
love
Sarah xxx
New skates by Martha
Look what Martha got today...
Today Martha's knew skates arrived. These skates were MUCH better than her old ones, they were a lot, but amazing! The skates can be extended from 4 1/2-6 1/2. The skates didn't fit me so we extended the skates to make them fit Martha. Katy says that they are professional skates, (this is because they're adult skates). They might fit me!
Tuesday, 27 August 2013
Good day ends in steroid slump
Martha spends the morning with Sian
Oh dear, Sian has four kittens and Martha loves them. Oh, how she wants to have a kitten. So, sorry Martha, but my answer is no! She has muddy shoes after walking in the water park, and has enjoyed an ice-cream.
Photos are to follow.
Katy spends the morning with Ella
Katy has been cycling, and skating and enjoying her time with Ella.
Christies for me
I spend the morning at Christies, have a snack, a sleep and then collect Martha. Martha and I walk back from Chorlton Water Park along the Mersey. Here are some photos. Autumn is definitely starting.
Katy with IPOD touch
I think we may have done it! She has email, has face time working, imessage works. I think the only thing she is missing is her you tube access.
Steroid Slump
I end the day really upset. About what, I don't know but I can't stop crying. My mum thinks it is the reaction to the reduction in the steroids. She says it is day 6 when it really hits you. Anyway, I am tearful and emotional and struggling to see the correct perspective. Everything is out of proportion, and I can't control what I am feeling. I am going with it. It will pass.
This cheered me up at the end of the day:
Oh dear, Sian has four kittens and Martha loves them. Oh, how she wants to have a kitten. So, sorry Martha, but my answer is no! She has muddy shoes after walking in the water park, and has enjoyed an ice-cream.
Photos are to follow.
Katy spends the morning with Ella
Katy has been cycling, and skating and enjoying her time with Ella.
Christies for me
I spend the morning at Christies, have a snack, a sleep and then collect Martha. Martha and I walk back from Chorlton Water Park along the Mersey. Here are some photos. Autumn is definitely starting.
Acorns are growing
anyone know what these are? Spot the butterfly.
Beautiful pinky red berries over large trees. They look delicious but are probably poisonous!
Katy with IPOD touch
Steroid Slump
I end the day really upset. About what, I don't know but I can't stop crying. My mum thinks it is the reaction to the reduction in the steroids. She says it is day 6 when it really hits you. Anyway, I am tearful and emotional and struggling to see the correct perspective. Everything is out of proportion, and I can't control what I am feeling. I am going with it. It will pass.
This cheered me up at the end of the day:
Katy coming out of the shower.
Monday, 26 August 2013
Apple store , Lyme Park and BBQ
Trip to Lyme Park
Lisa Watson and Iona take Martha and Katy to Lyme Park. Martha makes Katy promise to let her play with Katy and Iona. They both love Lyme Park - it is a giant natural park with a large stately home. It could be compared with Lake District for spread of land, small lake, large trees, a fantastic stream, woods, and a magnificent playground that is designed for children with courage. Both girls can climb to the top of a vertical tree trunk. I never like to watch! Here are some snaps that I have been sent.
Apple Store
I take Katy's IPOD touch to the Apple Store. We have never got it working properly. We arrive at opening time and there is already a big queue. I have to wait from 10 am to 11.30 for an appointment, and I am not allowed to leave the store. I start of thinking that I can't do it, but settle into treating it like a rest, and get my book out.
When I leave the store, she has working email, face time etc etc. When we get home, I can't get it going again... I have now decided to bin Katy's email account with Safe and Sound (I get to check her emails and approve/reject senders). The IPOD touch doesn't seem to cope with the extra layer to the email process. I set Katy up a Hotmail address. We are NEARLY there.
BBQ
When they are brought home, I can't get up. I am far too tired and had to stay in bed, so they went back to Lisa's for an hour or so.
I pick them up, and on the way home, we decide to have a BBQ. It is still red hot in the garden - we got it going well and cooked hotdogs followed by toasted marshmallows. I ate my tea, which Mum had prepared for me.
Lisa Watson and Iona take Martha and Katy to Lyme Park. Martha makes Katy promise to let her play with Katy and Iona. They both love Lyme Park - it is a giant natural park with a large stately home. It could be compared with Lake District for spread of land, small lake, large trees, a fantastic stream, woods, and a magnificent playground that is designed for children with courage. Both girls can climb to the top of a vertical tree trunk. I never like to watch! Here are some snaps that I have been sent.
I take Katy's IPOD touch to the Apple Store. We have never got it working properly. We arrive at opening time and there is already a big queue. I have to wait from 10 am to 11.30 for an appointment, and I am not allowed to leave the store. I start of thinking that I can't do it, but settle into treating it like a rest, and get my book out.
When I leave the store, she has working email, face time etc etc. When we get home, I can't get it going again... I have now decided to bin Katy's email account with Safe and Sound (I get to check her emails and approve/reject senders). The IPOD touch doesn't seem to cope with the extra layer to the email process. I set Katy up a Hotmail address. We are NEARLY there.
BBQ
When they are brought home, I can't get up. I am far too tired and had to stay in bed, so they went back to Lisa's for an hour or so.
I pick them up, and on the way home, we decide to have a BBQ. It is still red hot in the garden - we got it going well and cooked hotdogs followed by toasted marshmallows. I ate my tea, which Mum had prepared for me.
Good night everyone.
loads of love Sarah xxx
Sunday, 25 August 2013
Bank Holiday Sunday - no appointment on BH Monday
Early Morning Walk becomes blackberry picking with Katy
I have a terrible night's sleep with Katy in my bed. She arrives not breathing well, and I end up listening to her most of the night. As the night progresses, her breathing settles and she becomes well-sounding again. We have begun to think that the sunflowers could be the cause of the sneezing, and red eyes and sneezing and asthma... This could be a breakthrough for us!
Katy rises shortly after me and decides to come for a walk. She has made more blackberry tarts today.
I am feeling well - we go to visit Joan (Dave's mum)
We check the motorways and decide that we can head over to Liverpool. Joan is up for visitors. I still end up sleeping most of the time that we are there, but we do have a very nice visit. We have lunch, and we all go to the local park.
Evening tidy up time
After tea, Martha and Katy ask to have "family time" and we all play charades. We then go upstairs to tidy up their bedrooms. Both of them apply themselves to the task. We make a pile of clothes for charity shop, a pile for ebay and hang new hand-me-downs. I am able to give both of them praise, and we all end up feeling good. Both are asleep now, and looking forward to day out at Lyme Park tomorrow, with Lisa and Iona.
My health
I have changed my anti-sickness drugs, onto a stronger one. They are known to create constipation, so I am happy to not feel nauseous, but having to manage my diet to ensure I can have health bowel movements! Today, we got it right - hooray!!!
Enjoy the bank holiday
lots of love
Sarah
I have a terrible night's sleep with Katy in my bed. She arrives not breathing well, and I end up listening to her most of the night. As the night progresses, her breathing settles and she becomes well-sounding again. We have begun to think that the sunflowers could be the cause of the sneezing, and red eyes and sneezing and asthma... This could be a breakthrough for us!
Katy rises shortly after me and decides to come for a walk. She has made more blackberry tarts today.
I am feeling well - we go to visit Joan (Dave's mum)
We check the motorways and decide that we can head over to Liverpool. Joan is up for visitors. I still end up sleeping most of the time that we are there, but we do have a very nice visit. We have lunch, and we all go to the local park.
Evening tidy up time
After tea, Martha and Katy ask to have "family time" and we all play charades. We then go upstairs to tidy up their bedrooms. Both of them apply themselves to the task. We make a pile of clothes for charity shop, a pile for ebay and hang new hand-me-downs. I am able to give both of them praise, and we all end up feeling good. Both are asleep now, and looking forward to day out at Lyme Park tomorrow, with Lisa and Iona.
My health
I have changed my anti-sickness drugs, onto a stronger one. They are known to create constipation, so I am happy to not feel nauseous, but having to manage my diet to ensure I can have health bowel movements! Today, we got it right - hooray!!!
Enjoy the bank holiday
lots of love
Sarah
Saturday, 24 August 2013
England get silver in women's hockey
Women's hockey Euro Hockey Finals
I was surprised that we made it into the final, so to find we were 4-4 at full time was quite amazing. I was able to see the whole game on TV too, which is so unusual. Such a shame we couldn't convert this into a win, in the shoot out, but a delight to get second place in the end. Well done England!
End of the day
Here are Martha and Izzy J who have been practicing with make up. They are currently choreographing a dance with Katy. Katy had terrible asthma tonight.
Nigel and Sam, Natasha and Rebeca visit
I was planning to go and stay with Nigel (old uni friend) in June, but through Chris B sent a message saying that I didn't think I would make it. A couple of weeks later, I am diagnosed and send him a note to let him know. His reply was that "I could have found a better excuse!" This still makes me laugh a lot.
It was great to see them all. Natasha is moving into year 8 and Rebeca is moving into year 6. All four girls get on really well. I barely talked at all with Natasha and Rebeca because they were playing so well with Martha and Katy.
Nigel, Sam and I caught up. They brought me beautiful sunflowers, and some delicious looking chocolates. Great to see you all. Thanks so much for coming.
Our morning
Martha made a delicious tiramisu. She calls it her "signature dish", which always makes me smile. She is very skilled at making it from raw eggs.
Katy filled her jam tart cases with blackberries mashed in jam. The blackberry jam tarts were outstanding.
I then have an early sleep, to prepare for visit from Nigel and Sam.
Early morning walk
I leave the house with phone, steroid card and drink of water and no key. I only realise this as I am walking out of my road, and it starts to drizzle. I can't knock on the door because I would wake everyone (at 6.45 am), so I decide to carry on, and pretty quickly the rain stops. The brook and the River Mersey are both raging, following the heavy rain last night. There is rubbish passing, at a pace, down the Mersey - it has been scooping up wine bottles and a football, and various bits of wood. I am first along the path, because I keep getting covered in spider webs. I move down onto the path that runs directly along the river, to avoid the tickling. I cover old run plus extension.Have a good time
loads of love
Sarah xxxx
Friday, 23 August 2013
Morning walk becomes blackberry picking outing
I get up an hour late today, and when going for my walk, Katy asks to come with me. She wants to collect blackberries. Katy goes to get changed into long armed and long legged clothing, and I get some tubs and plastic gloves. As we leave, Martha joins us too. My time out is longer, and my walk is shorter, and we had a good time. There are sooooo many heavily laden blackberry bushes.
While out, Katy has made a deal with me. She wants some time with me, on my own. She is also very (seasonally) asthmatic and in need of motherly loving and care. She wants to make blackberry tarts. Following a favourite recipe of ours, which we cut out of a magazine, she makes some delicious looking pastry cases. I am sous chef - I tidy up around her.
My appointment is reasonably on time. I am so happy to have a three day weekend. I don't go back until Tuesday, because of the bank holiday. I have radiotherapy to ELO (ah ah telephone line ...).
A juice in "on the corner"
My local café bar sells what appear to be pressed juices. We enjoy what we drink, but the juices are from a centrifugal spinner. It was still very nice to have them served to me.
Martha and Katy are out with Dave buying school shoes
Let's wait and see what they bring home.
Martha and Katy go to Southport - some snaps
M and K stay with Nanna (last week)
The first picture is from the local Park in Liverpool. Martha and Katy are playing basketball with a giant tennis ball, with Nanna.
Martha and Katy go on day trip to Southport, with Daddy and Nanna.
This picture makes me smile. This is known as the Christmas pose. We have a photo of Dave with the girls, in this pose, from every Christmas. I can't believe he can still do it! I don't think I can carry one of them like this, any more.
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