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
Saturday, 31 August 2013
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.
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
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...
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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
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:
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.
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.
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.
Cooking
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.
Martha makes giant Yorkshire puddings, from a fab Jamie Oliver recipe. It uses 3 eggs, so they always rise well. During this activity, I have to go for a sleep, so I miss the grand opening of the oven. Here is Martha eating her Yorkshire pudding based dinner.
Off to radiotherapy
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.
Thursday, 22 August 2013
Mucking up my drugs today; still a good day
Morning activity at something to six
I sort out all my drugs into my dispenser. During this process I decide to put all the steroids in one jar. Only then, I remember that they are different sized tablets. Some are 2mg and some are 0.5mg; I can't tell them apart. One type is bigger than the other, but I do not know if this is a 2mg or 0.5 mg. I have to call the Christie hotline for help. They advise me to wait until my appointment and check when I get to my suite 5. Someone from suite 5 calls me and tells me to take 3 x 0.5 mg, and after a chat she understands that I don't know which tablet is which. We agree that I should take one tablet, and then check at the pharmacy later. It turns out that the biggest table is the 0.5 mg, so I am required to take two more with my lunch, later in the day. All done.
I go out for my walk - my old run today, at a good pace.
Katy goes to cricket course
Martha is still sleeping. I help Katy get ready for a course at Old Trafford. She is going with her friend Rosy, and Rosy's mum is taking them to the course. I drop her at their house at 9.15 am. At the end of the course, she has really enjoyed it. Katy and Rosy were the only girls - no surprises there!
Martha plays with Lauren
On my way to Christie's we drop Martha off at her girl guide friend's house. She is feeling a little shy, but settles in quickly.
Radiotherapy appointment on time
I had a very quick appointment today. Home in time for a good sleep. I have been very tired because I did not sleep well last night.
Afternoon with Martha, Macmillan Nurse and Community nurse
Martha comes home at 2pm, tied for a three legged race. She settles to watch TV for a while.
I have a visit from a Macmillan Nurse, who was very friendly and supportive. He will support me through whatever comes my way. He has previously worked in a hospice so is skilled in supporting people who are managing the end of their lives. He was also very positive, and we are both committed to my full recovery. He has referred me for support from a benefits expert, so that we can find any funds that I can get help from.
A community nurse arrives during the meeting, and we check in, and she quickly checks out. No problems at all today.
Martha and I then go on a skate (Martha) and walk (me) to the doctor's surgery. I have a letter giving doc permission to share my personal information with my mum's insurance company. I hand in the form (this is for my mum) and collect a sick note. The sick note is extended from 1 Sept to 30 Nov. This is too long a time for me, so I return it and ask for it to be to 31 October. I am hoping to return to work at half term. Let's wait and see...
We then have plans to go to the park on our own, but bump into Katy. In the end, we all go to the park and have our tea at a picnic bench.
Good night everyone
loads of love
Sarah xxx
I sort out all my drugs into my dispenser. During this process I decide to put all the steroids in one jar. Only then, I remember that they are different sized tablets. Some are 2mg and some are 0.5mg; I can't tell them apart. One type is bigger than the other, but I do not know if this is a 2mg or 0.5 mg. I have to call the Christie hotline for help. They advise me to wait until my appointment and check when I get to my suite 5. Someone from suite 5 calls me and tells me to take 3 x 0.5 mg, and after a chat she understands that I don't know which tablet is which. We agree that I should take one tablet, and then check at the pharmacy later. It turns out that the biggest table is the 0.5 mg, so I am required to take two more with my lunch, later in the day. All done.
I go out for my walk - my old run today, at a good pace.
Katy goes to cricket course
Martha is still sleeping. I help Katy get ready for a course at Old Trafford. She is going with her friend Rosy, and Rosy's mum is taking them to the course. I drop her at their house at 9.15 am. At the end of the course, she has really enjoyed it. Katy and Rosy were the only girls - no surprises there!
Martha plays with Lauren
On my way to Christie's we drop Martha off at her girl guide friend's house. She is feeling a little shy, but settles in quickly.
Radiotherapy appointment on time
I had a very quick appointment today. Home in time for a good sleep. I have been very tired because I did not sleep well last night.
Afternoon with Martha, Macmillan Nurse and Community nurse
Martha comes home at 2pm, tied for a three legged race. She settles to watch TV for a while.
I have a visit from a Macmillan Nurse, who was very friendly and supportive. He will support me through whatever comes my way. He has previously worked in a hospice so is skilled in supporting people who are managing the end of their lives. He was also very positive, and we are both committed to my full recovery. He has referred me for support from a benefits expert, so that we can find any funds that I can get help from.
A community nurse arrives during the meeting, and we check in, and she quickly checks out. No problems at all today.
Martha and I then go on a skate (Martha) and walk (me) to the doctor's surgery. I have a letter giving doc permission to share my personal information with my mum's insurance company. I hand in the form (this is for my mum) and collect a sick note. The sick note is extended from 1 Sept to 30 Nov. This is too long a time for me, so I return it and ask for it to be to 31 October. I am hoping to return to work at half term. Let's wait and see...
We then have plans to go to the park on our own, but bump into Katy. In the end, we all go to the park and have our tea at a picnic bench.
Good night everyone
loads of love
Sarah xxx
Wednesday, 21 August 2013
my drug regime
“6 Fields Brain” –
radiotherapy and chemotherapy programme.
Revised programme, following appointment with consultant. I am over half way :)
Date
|
Time of appointment
|
Omeprazole
(stomach protector)
|
Anti-sickness
|
Last time to eat
|
Dexamethazone
(steroid 1.5mg)
|
Time of anti-sickness tablet
(Metoclopramide)
|
Time of chemotherapy tablet
|
Co---trimoxazole (antibiotic)
|
Allowed to eat
|
Mon
|
11 ish
|
When I get up
|
Before breakfast
|
Early breakfast
|
With breakfast
|
9ish / each meal
|
10ish
|
Take 2 x 480mg
|
12 ish
|
Tues
|
11 ish
|
When I get up
|
Before breakfast
|
Early breakfast
|
With breakfast
|
9ish/ each meal
|
10 ish
|
|
12 ish
|
Wed
|
2 ish
|
When I get up
|
Before breakfast
|
9 ish
|
With breakfast
|
12ish/each meal
|
1 ish
|
Take 2 x 480 mg
|
3 ish
|
Wed
|
Meet consultant
|
|
|
|
|
|
|
|
|
Thurs
|
11 ish
|
When I get up
|
Before breakfast
|
Early breakfast
|
With breakfast
|
9ish/each meal
|
10 ish
|
|
12 ish
|
Fri
|
11 ish
|
When I get up
|
Before breakfast
|
Early breakfast
|
With breakfast
|
9ish/each meal
|
10 ish
|
Take 2 x 480 mg
|
12 ish
|
Drugs
Chemotherapy – Temozolomide Take
once a day before radiotherapy.
Antibiotic – Co-trimoxazole
2 x 480 mg
every Mon Wed and Fri
Anti-sickness - Metoclopramide Take one tablet up to three times
a day.
Steroid - Dexamethasone 1 x 1.5mg every day with food.
Stomach protector Omeprazole Take before food at start of the day.
Anti-sickness -
Take one tablet once a day.
Feeling better today ;)
My morning is good
I have breakfast today because I have an afternoon appointment. I then go for my long walk, slowly, but complete the distance happily.
I wash my hair
Eek, I did not want to do this. I was worried it would hurt. I have not washed my hair for so long that I can't remember when I last washed it. It had to be washed. I read my book for a little while, avoiding it. In the end, I sink down into the bath waiting for my skin to scream at me, except it doesn't hurt at all. I wash it gently. Loads of hair is falling out that I scoop up and put on the side of the bath. Not nice. I have clean hair. :)
Keys cut and local shop sells masticated juices.
I have to get some keys cut - I lost a set when I was in hospital, and have only one set to share around. Next door is Battery Park, who sell juices. I discovered today that they also sell masticated juices. I tried one with ginger in it, and it was delicious. I plan to go back and copy down their recipes at some point. It was also a real treat to have one that I didn't have to make.
Radiotherapy appointment followed by meeting with consultant
This was with my specialist nurse, Charlotte, and my consultant Dr McBain. The outcome of the meeting was:
Here it is. My bald patch is growing every day.
And finally
I have just had a night out. Belinda Cashin, Julie Miskelly and Kay Statham - we have had a meal out at Yakisoba. I used to work with them as Partnership Development Manager, in Trafford. We usually meet up two or three times a year, and have made it out tonight. I have put make up on for the first time since my operation. I enjoyed my pad thai noodle meal, with a bento box of delicious salad, fruit and miso soup. An excellent evening, thanks girls.
Have a good day everyone
lots of love
Sarah xxx
I have breakfast today because I have an afternoon appointment. I then go for my long walk, slowly, but complete the distance happily.
I wash my hair
Eek, I did not want to do this. I was worried it would hurt. I have not washed my hair for so long that I can't remember when I last washed it. It had to be washed. I read my book for a little while, avoiding it. In the end, I sink down into the bath waiting for my skin to scream at me, except it doesn't hurt at all. I wash it gently. Loads of hair is falling out that I scoop up and put on the side of the bath. Not nice. I have clean hair. :)
Keys cut and local shop sells masticated juices.
I have to get some keys cut - I lost a set when I was in hospital, and have only one set to share around. Next door is Battery Park, who sell juices. I discovered today that they also sell masticated juices. I tried one with ginger in it, and it was delicious. I plan to go back and copy down their recipes at some point. It was also a real treat to have one that I didn't have to make.
Radiotherapy appointment followed by meeting with consultant
This was with my specialist nurse, Charlotte, and my consultant Dr McBain. The outcome of the meeting was:
- stronger anti-sickness drugs to take one every day. I can take the others on top of this, so I am very hopeful that I can fend off any nausea;
- reduced dose of steroids. I reduce from 2mg per day to 1.5 mg per day for a week. Then reduce to 1mg per day for a week. Then reduce to 0.5 for a week. Let's see how it goes. More sleep for me, I hope.
- more anti-biotics (I was running out)
- I am allowed to eat before the morning appointment. We think my sickness is a result of not eating from the night before, until after lunchtime. My consultant gave me permission to have a small porridge before my morning appointment. I think this will help me a lot.
Here it is. My bald patch is growing every day.
And finally
I have just had a night out. Belinda Cashin, Julie Miskelly and Kay Statham - we have had a meal out at Yakisoba. I used to work with them as Partnership Development Manager, in Trafford. We usually meet up two or three times a year, and have made it out tonight. I have put make up on for the first time since my operation. I enjoyed my pad thai noodle meal, with a bento box of delicious salad, fruit and miso soup. An excellent evening, thanks girls.
Have a good day everyone
lots of love
Sarah xxx
Tuesday, 20 August 2013
Sick day today
Nausea and vomiting returns
I had a good morning and a very difficult afternoon. I got sick after lunch, and ended up really struggling to control it. Anti-sickness drugs weren't denting it, so in the end had to call Christie hotline for help. They called community nurse to attend. I was advised to take steroids and see if these helped settle stomach, which I followed. It did in the end settle down. The nurse was very friendly and was happy for me to wait to see if I needed the injection, and in the end I turned out to be fine. I am very tired and about to go to sleep.
Occupational Health
I also had a visit from occupational therapist, who is helping me prepare for short term memory loss. I have some homework to do. She is also making sure that I know her, so that if I need more help as I progress through radiotherapy, then I will be comfortable with her.
Sarah McCall kindly came round and helped me a lot by chatting with me. Louise came round later, too. Thank you both :)
Martha and Katy come home tomorrow
I have a bald patch too - photo tomorrow
lots of love to everyone
Sarah xxxx
I had a good morning and a very difficult afternoon. I got sick after lunch, and ended up really struggling to control it. Anti-sickness drugs weren't denting it, so in the end had to call Christie hotline for help. They called community nurse to attend. I was advised to take steroids and see if these helped settle stomach, which I followed. It did in the end settle down. The nurse was very friendly and was happy for me to wait to see if I needed the injection, and in the end I turned out to be fine. I am very tired and about to go to sleep.
Occupational Health
I also had a visit from occupational therapist, who is helping me prepare for short term memory loss. I have some homework to do. She is also making sure that I know her, so that if I need more help as I progress through radiotherapy, then I will be comfortable with her.
Sarah McCall kindly came round and helped me a lot by chatting with me. Louise came round later, too. Thank you both :)
Martha and Katy come home tomorrow
I have a bald patch too - photo tomorrow
lots of love to everyone
Sarah xxxx
Monday, 19 August 2013
A good day
Blackberry tarts made with wheat flour
Martha and Katy, these are for you. I have not eaten the missing one. I had put it in a plastic tub, and then remembered to take the photo for you to see them. They will be waiting for you, when you get home.
Long Walk
I did my long walk this morning - my old run and some more. I felt tempted to jog some of it, but didn't. My route is lined with blackberry bushes. Martha and Katy want to go down to collect berries, so we will do this over the weekend, I hope. The apple trees are heavy too, although the apples do not look ripe yet. Here is a picture of the thistles. I haven't really captured the beauty, but I have enjoyed seeing them.
Cancer Patient
I took my picture on the way to my appointment (on the tram). It was intended to show you that I was wearing a scarf. I think I look like a cancer patient! My face is steroid-bloated. Underneath the scarf my hair is coming out.
Trip to shoe shop
After my appointment, I come home for a sleep. Then, I head out again to change my shoes. I catch the tram and I am quickly at Clarks to buy some "unstructured" shoes. I don't like them, but find a pair that I think look ok. These dolly shoes will have orthotics fitted into them to stop me walking on a lump that has grown underneath my left baby toe joint (from a camping accident).
The third man
I have a good rest. I have a good chat with Martha, Katy and Nanna. They have been shopping in Joan's favourite shop - TJHughes. Martha has a large pillow, and Katy is very excited about having a lava lamp. I have posted Joan a framed set of Andy Murray stamps, that will arrive tomorrow. I think she will know what the parcel is, because she will have seen my BLOG about the stamps.
I finish watching The Third Man. What a good film! The lead is Orson Wells.
Have a good day tomorrow
loads of love
Sarah xxx
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