I am not feeling well at all. I know it will pass, but it is still here with me. I feel lethargic, tired, my eye is swollen, I also have abdominal cramping. I know it is my steroid low, and that I have to ride this out. It won't be long before I start feeling better again...
I went for my walk in the pouring rain, and had my appointment with my Macmillan nurse, which was good.
Martha was sent home from school. I was asleep with my phone switched off, so I did not get the calls or texts until I awoke. The first I read was from Dave, asking if I had seen the messages, to which I replied "no". I then found the messages, and went straight to the school. She had been waiting a couple of hours.
The good thing is, that I called the doctors and was able to get an emergency appointment. Martha has an ear infection, and another course of antibiotics. I don't know if she will go to school tomorrow; I will make that decision in the morning.
Around all of this was drama club. I picked up Anya from school thinking that Anna could pick her up on the way, but it turned out that Sasha isn't well either. In the end (after a lot of texting) Anya's Dad picked her up from the doctors' surgery. Katy still went swimming as normal with Ann-Marie.
I made an easy meal for their tea.
Bed time now.
Have a good day
love
Sarah xxxx
Tuesday, 22 October 2013
Monday, 21 October 2013
chemo good :), steroid low:(
Steroid low
I struggled to get up this morning, and we barely left on time for school. On the way to school, I bumped into my hairdresser, and realised that I did not have my scarf. I return home for my scarf, and bump into Sarah McCall, where I fall into tears. This has been the feature of my day. Later, on my walk (in the pouring rain) I bump into Claire (Charlie's mum) and I burst into tears again. I am crying on and off all day, for no apparent reason. I recognise how I feel, as part of my steroid withdrawal. The good thing is that I know that this will pass. In a couple of days, my body will adjust and start producing the correct amount of steroids.
Chemotherapy goes well
I manage my chemo drugs well. I want to go to sleep, but stay awake long enough to take my chemo drugs, so that when I wake, I can eat my lunch. I have a long sleep, and wash up while my lunch cooked. Trying to feel better, I run a bath. It doesn't help much, but it is always good to feel clean and fragrant!
Hospital appointment - Salford Royal
Dave takes me to the appointment. I tell him that I have not been well today, and he says that he had already noticed.
Before I went to France, a friend of Dave's taught Martha and Katy (and me) French. At outpatients we are served by his mum. My appointment was exactly on time - great news.
At the appointment we discuss the problem that I have with my jaw - that I cannot open it properly, and that it is painful. I now know that this is a very common problem after the surgery. When the operate within the skull, they cut the tendon (?) above the mandible, and many patients suffer with jaw pain after the operation. It can clear up within a few weeks, or take much longer. I have been assured that it will clear up in its own time, so I do not need to worry about it.
Back Home
Katy is at Charlie's for tea and to go to cubs, so I have an evening with Martha, on her own. She makes really good use of her time. She finished knitting the second side of her bag, and learns to cast off. After Wolfblood, we retire to the kitchen where she starts catching up on her news journal. She is really optimistic that she will finish this piece of work before the end of this week. I am relieved! After The Simpsons, and a little of Come Dine With Me (whilst Martha is eating chocolate cake), she retires to bed and finishes Kenzuke's Kingdom. What a productive evening!
Katy comes home and we read a chapter of her book Sky Hawke, and have a good chat in bed.
Bed for me now. I am expecting a similar day tomorrow, and then to see some improvement. My Macmillan nurse comes tomorrow, which is good timing for me.
Have a good day tomorrow :)
love
Sarah xxxxxx
I struggled to get up this morning, and we barely left on time for school. On the way to school, I bumped into my hairdresser, and realised that I did not have my scarf. I return home for my scarf, and bump into Sarah McCall, where I fall into tears. This has been the feature of my day. Later, on my walk (in the pouring rain) I bump into Claire (Charlie's mum) and I burst into tears again. I am crying on and off all day, for no apparent reason. I recognise how I feel, as part of my steroid withdrawal. The good thing is that I know that this will pass. In a couple of days, my body will adjust and start producing the correct amount of steroids.
Chemotherapy goes well
I manage my chemo drugs well. I want to go to sleep, but stay awake long enough to take my chemo drugs, so that when I wake, I can eat my lunch. I have a long sleep, and wash up while my lunch cooked. Trying to feel better, I run a bath. It doesn't help much, but it is always good to feel clean and fragrant!
Hospital appointment - Salford Royal
Dave takes me to the appointment. I tell him that I have not been well today, and he says that he had already noticed.
Before I went to France, a friend of Dave's taught Martha and Katy (and me) French. At outpatients we are served by his mum. My appointment was exactly on time - great news.
At the appointment we discuss the problem that I have with my jaw - that I cannot open it properly, and that it is painful. I now know that this is a very common problem after the surgery. When the operate within the skull, they cut the tendon (?) above the mandible, and many patients suffer with jaw pain after the operation. It can clear up within a few weeks, or take much longer. I have been assured that it will clear up in its own time, so I do not need to worry about it.
Back Home
Katy is at Charlie's for tea and to go to cubs, so I have an evening with Martha, on her own. She makes really good use of her time. She finished knitting the second side of her bag, and learns to cast off. After Wolfblood, we retire to the kitchen where she starts catching up on her news journal. She is really optimistic that she will finish this piece of work before the end of this week. I am relieved! After The Simpsons, and a little of Come Dine With Me (whilst Martha is eating chocolate cake), she retires to bed and finishes Kenzuke's Kingdom. What a productive evening!
Katy comes home and we read a chapter of her book Sky Hawke, and have a good chat in bed.
Bed for me now. I am expecting a similar day tomorrow, and then to see some improvement. My Macmillan nurse comes tomorrow, which is good timing for me.
Have a good day tomorrow :)
love
Sarah xxxxxx
Sunday, 20 October 2013
chemo day 4 - still in good shape :)
Pancakes
I have an awake night with Martha, who has diarrhoea in the night. I wake up and it is light (with Martha next to me). I try to go back to sleep, but have to get up. Katy joins me, and we make pancakes with strawberries and cream. The soft fruit sweet flavour of the strawberries was delicious. Martha joins us and enjoys the pancakes too. Katy has finished her homework - she has copied a skeleton from the internet, as a skeletal Egyptian tomb raider, I think. Martha still has loads of homework to complete.
We put a film on the TV, and I have to go back to bed. I have managed my tablets well, and take Ondanstron when I get in bed, and take chemo tablets when I awake. Katy wakes me to help her write an application to join the school magazine group. This is the topic for Martha's homework, so we end up doing it all together. Hooray! One topic is completed.
Longford Park
I make ham and cheese toasties for lunch, on the understanding that I don't start cooking until both girls are dressed for an outing to the park. I have a spinach and avocado salad. We go to Longford Park - Martha and Katy are on their skates; I am happy to be walking.
I have an awake night with Martha, who has diarrhoea in the night. I wake up and it is light (with Martha next to me). I try to go back to sleep, but have to get up. Katy joins me, and we make pancakes with strawberries and cream. The soft fruit sweet flavour of the strawberries was delicious. Martha joins us and enjoys the pancakes too. Katy has finished her homework - she has copied a skeleton from the internet, as a skeletal Egyptian tomb raider, I think. Martha still has loads of homework to complete.
We put a film on the TV, and I have to go back to bed. I have managed my tablets well, and take Ondanstron when I get in bed, and take chemo tablets when I awake. Katy wakes me to help her write an application to join the school magazine group. This is the topic for Martha's homework, so we end up doing it all together. Hooray! One topic is completed.
Longford Park
I make ham and cheese toasties for lunch, on the understanding that I don't start cooking until both girls are dressed for an outing to the park. I have a spinach and avocado salad. We go to Longford Park - Martha and Katy are on their skates; I am happy to be walking.
Martha climber
They do have shoes with them as well, and they spend a lot of time climbing trees. Martha climbed down a piece of climbing wall, that I did not think she would be able to do. She is quite an impressive climber! There were overhangs that she had to negotiate, and I was underneath her wondering what I would do if she fell off! I would love to be able to take her to a climbing club, but this is simply not possible without a car.
More homework
Back at home, Martha starts to tackle her news journal. Katy is happily entertaining herself learning the words to Les Miserables songs. Martha is very disgruntled to be behind with her journal. We managed a little catching up, but she has a long way to go.
Swimming
Dave comes to take the girls swimming. Martha is feeling poorly again, and I agree to go with her. From swimming, I check both girls for nits. Martha is with me, in my bed now.
Have a good week :)
lots of love
Sarah xxx
Saturday, 19 October 2013
Chemo day 3 - good again :)
Morning activity
Morning activity has been creating Halloween costumes for a dress up day at school on Friday. Martha is going to be the Devil's wife (I think). Katy will be a dead school boy.
We also dug out our Halloween decorations, which we will put up next week.
Chemotherapy
I struggled to stick to my times today. It is easier to do it properly while Martha and Katy are at school! I ended up starving hungry, waiting to eat my lunch that was late, because I had forgotten to take a tablet. Martha and Katy ate properly at the correct time!
I feel OK. I do not feel ill, just tired.
Afternoon trip to Chorlton
We go to Quality Save for a few Halloween bits, and then to the knitting shop. What a fantastic shop this is - in Chorlton Precinct - it sells everything for sewing, knitting, stamping, sticking ... We buy wool and needles for Katy to make a purse, and for me to make a woolly hat. Back at home, we then spend the afternoon knitting! Katy has learned to purl confidently. Martha is systematically creating her second side to her bag.
Hairy biker Dave - tikka misalla
I continue to use my Hairy biker cook book, and create a delicious tikka misalla. Martha helped me cook, and Martha and Katy both loved it :) It was very healthy and low fat.
Homework - please save me!!!
I am finding homework an incredible burden. It is taking forever... I would not let Martha or Katy watch Strictly Come Dancing tonight, until another piece of homework had been completed. I was very short tempered and irritable. Partly because I was tired, I know. We watched most of Strictly in the end. Come on Hairy Biker Dave!
Bedtime now
Good night - gotta get some sleep :)
Sarah xxxxx
Morning activity has been creating Halloween costumes for a dress up day at school on Friday. Martha is going to be the Devil's wife (I think). Katy will be a dead school boy.
We also dug out our Halloween decorations, which we will put up next week.
Chemotherapy
I struggled to stick to my times today. It is easier to do it properly while Martha and Katy are at school! I ended up starving hungry, waiting to eat my lunch that was late, because I had forgotten to take a tablet. Martha and Katy ate properly at the correct time!
I feel OK. I do not feel ill, just tired.
Afternoon trip to Chorlton
We go to Quality Save for a few Halloween bits, and then to the knitting shop. What a fantastic shop this is - in Chorlton Precinct - it sells everything for sewing, knitting, stamping, sticking ... We buy wool and needles for Katy to make a purse, and for me to make a woolly hat. Back at home, we then spend the afternoon knitting! Katy has learned to purl confidently. Martha is systematically creating her second side to her bag.
Hairy biker Dave - tikka misalla
I continue to use my Hairy biker cook book, and create a delicious tikka misalla. Martha helped me cook, and Martha and Katy both loved it :) It was very healthy and low fat.
Homework - please save me!!!
I am finding homework an incredible burden. It is taking forever... I would not let Martha or Katy watch Strictly Come Dancing tonight, until another piece of homework had been completed. I was very short tempered and irritable. Partly because I was tired, I know. We watched most of Strictly in the end. Come on Hairy Biker Dave!
Bedtime now
Good night - gotta get some sleep :)
Sarah xxxxx
Friday, 18 October 2013
Chemo day 2 - still good :)
Catch up with headteacher
I have taken my new sick note to my school head teacher. It is for 3 months. When I am sleeping less in the day, I am hoping that I will be able to pick up some work for school, but only when I am ready. I have offered to help with making costumes for Charlie and the Chocolate Factory - this is something that I can do at home when I have "pottering" time. I enjoyed our chat.
Walk through the meadows
I changed my route today. The acorns have all fallen from the oak trees. The red berries were bright. The field next to the football club has been cleared and flattened; I do not know what the plans are. I tried to find out when the bonfire party takes place at the football club. I really hope it is on the 2nd November, and not the 9th, because we are in London on 9th for Charlie and the Chocolate Factory.
Chemotherapy
I have taken all my tablets at the correct time today. I have not felt nauseous at all, and outside of sleeping, I have felt quite well. I did have a little bit of dizziness this morning, but it passed quickly.
My sleep is getting later
I am not sleeping until later in the afternoon - 1.30 ish until 3 ish. I don't know if this represents any change, or if it because I am so focused on taking my tablets in the correct order during the morning. However, I have noticed a change. Dr McBain said that the tiredness will start to pass within the next couple of weeks. It is a side effect of the radio therapy, which usually clears after six weeks. My waking at night for the loo will hopefully pass when I stop taking the steroids. I have some time to go with this (at least 6 weeks). I am still celebrating my whole night's sleep from two nights ago :)
Knitting
Martha and Katy have continued knitting. Katy has finished the knitting part of her phone cover. We have to tidy up all the connections between the colours, and sew it up tomorrow. Martha has finished one side of the bag that she is making. I cast off for her. Next, she makes the opposite side - repeating exactly what she has knitted already.
I am going to knit a hat. How things have changed with you tube! I learned today how to create stitches from a you tube video. My hat pattern is free - I have printed it off - and there is a video to show me how to knit it. It is very different from when I was knitting in my early twenties.
Coronation Street
As you know, I don't watch much TV and I am not up to date with the soaps. We watched Coronation Street tonight (whilst knitting) and there is a big cancer theme in Hayley's story line. Katy was talking to me about my cancer, and saying that my cancer was different because it was in my brain. Very tricky! I can't remember what I said at all.
Have a good weekend
loads of love
Sarah xxxx
I have taken my new sick note to my school head teacher. It is for 3 months. When I am sleeping less in the day, I am hoping that I will be able to pick up some work for school, but only when I am ready. I have offered to help with making costumes for Charlie and the Chocolate Factory - this is something that I can do at home when I have "pottering" time. I enjoyed our chat.
Walk through the meadows
I changed my route today. The acorns have all fallen from the oak trees. The red berries were bright. The field next to the football club has been cleared and flattened; I do not know what the plans are. I tried to find out when the bonfire party takes place at the football club. I really hope it is on the 2nd November, and not the 9th, because we are in London on 9th for Charlie and the Chocolate Factory.
Chemotherapy
I have taken all my tablets at the correct time today. I have not felt nauseous at all, and outside of sleeping, I have felt quite well. I did have a little bit of dizziness this morning, but it passed quickly.
My sleep is getting later
I am not sleeping until later in the afternoon - 1.30 ish until 3 ish. I don't know if this represents any change, or if it because I am so focused on taking my tablets in the correct order during the morning. However, I have noticed a change. Dr McBain said that the tiredness will start to pass within the next couple of weeks. It is a side effect of the radio therapy, which usually clears after six weeks. My waking at night for the loo will hopefully pass when I stop taking the steroids. I have some time to go with this (at least 6 weeks). I am still celebrating my whole night's sleep from two nights ago :)
Knitting
Martha and Katy have continued knitting. Katy has finished the knitting part of her phone cover. We have to tidy up all the connections between the colours, and sew it up tomorrow. Martha has finished one side of the bag that she is making. I cast off for her. Next, she makes the opposite side - repeating exactly what she has knitted already.
Coronation Street
As you know, I don't watch much TV and I am not up to date with the soaps. We watched Coronation Street tonight (whilst knitting) and there is a big cancer theme in Hayley's story line. Katy was talking to me about my cancer, and saying that my cancer was different because it was in my brain. Very tricky! I can't remember what I said at all.
Have a good weekend
loads of love
Sarah xxxx
Thursday, 17 October 2013
First day of chemo - good
So far so good ...
Full night's sleep
For the first time since my diagnosis, I slept through the whole night. I woke up at 6.45 am - fantastic!
Morning walk
Martha and Katy are both knitting before we leave for school. They are both really enjoying it. After school drop off, I head off for a walk down the meadows, with Mike - one of the dads. The sun is shining brightly, and we can see the mist floating up from the nettles along the brook. I am not sure you can get the experience from a still photograph. The mist was rising up in little clouds all along the river bank.
Full night's sleep
For the first time since my diagnosis, I slept through the whole night. I woke up at 6.45 am - fantastic!
Morning walk
Martha and Katy are both knitting before we leave for school. They are both really enjoying it. After school drop off, I head off for a walk down the meadows, with Mike - one of the dads. The sun is shining brightly, and we can see the mist floating up from the nettles along the brook. I am not sure you can get the experience from a still photograph. The mist was rising up in little clouds all along the river bank.
Shopping
I then head to the shops to collect groceries. I have bought a Hairy Biker Dave cook book in the book club at school - it was £5, and full of recipes that are suitable for my diet. Katy chose a main course and a pudding, so I stocked up on the ingredients and cooked the meal with her at tea time. We had enchiladas followed by apple and raspberry crumble (with cornflakes in the crumble). Martha will choose our next cook book meal, next week.
Chemotherapy
I have followed my schedule. I have been very careful to eat the correct balance of fresh food today, to help me avoid getting "bunged up" by anti-sickness tablets. I have only taken one anti-sickness tablet too, hoping that this is all I will need. I will take more if I start to get nauseous. I have had no side effects so far. :)
After lunch, I sleep until 3pm.
Football Tournament
I then get picked up to go to watch Katy play football. Her friend Rosy is not there because she is poorly, so Katy became the goalie. It is a painful experience watching your daughter play football. Every time she made a save, I thought I was going to have a heart attack! She did very well. They won 2-0, 1-0 and drew 1-1 (to a team with an extra player - I was told this on the way home. How I wish that I had noticed - I would have gone and told the referee. I can't help but be totally competitive on a sports pitch; I would not have been able to let this go.) Here is Katy in goal.
At home, Martha and Katy start knitting again ...
To conclude - day 1 of chemo has passed without any consequences so far.
Have a good Friday :)
lots of love
Sarah xxx
Wednesday, 16 October 2013
The rest of my day
Knitting
Martha is completing a Chorlton Challenge. To gain the award, Martha has to:
Martha's audition
Martha completed her audition. She doesn't think she did very well. Uncomfortable with her props in front of her class, she only took the walking stick. Without her hat, she forgot some of her dance; even the key moves, it seems. She wants to know what part she will get. Her preference remains Willy Wonka or Verucca Salt. In the end, she will be happy with any key role.
She told me Sasha's performance was really good and that she would make a good Willy Wonka. I said, "that would be fantastic", and she scowled at me. I had to add, "if it isn't you, Martha".
Bev's birthday
Here is Bev in her new cat cardi. Not to my taste at all, but when I saw it, I had to buy it for her. It looks good! Bev is a massive cat lover. Her cats are black and white too.
Helen goes to Everest tomorrow
Enjoy every moment of your experience. I can't wait to hear about it when you are home.
Have a good week
love
Sarah xxx
Martha is completing a Chorlton Challenge. To gain the award, Martha has to:
- keep a journal of news for one month
- learn two new skills
- make a presentation
- other tasks linked to knowledge of the world
Katy is making a cover for her phone
Martha is making a bag
Sasha is learning to knit cable stitch. I wish I had taken her photo too. Maybe next time ...
Martha completed her audition. She doesn't think she did very well. Uncomfortable with her props in front of her class, she only took the walking stick. Without her hat, she forgot some of her dance; even the key moves, it seems. She wants to know what part she will get. Her preference remains Willy Wonka or Verucca Salt. In the end, she will be happy with any key role.
She told me Sasha's performance was really good and that she would make a good Willy Wonka. I said, "that would be fantastic", and she scowled at me. I had to add, "if it isn't you, Martha".
Bev's birthday
Here is Bev in her new cat cardi. Not to my taste at all, but when I saw it, I had to buy it for her. It looks good! Bev is a massive cat lover. Her cats are black and white too.
Helen goes to Everest tomorrow
Enjoy every moment of your experience. I can't wait to hear about it when you are home.
Have a good week
love
Sarah xxx
Chemotherapy 2
My 9.30 am appointment with Dr McBain lasted until 1 pm. Dave took me to the appointment. It took until 10.45 to see Dr McBain.
This is what I learned:
Before breakfast: Omeprazole
Breakfast
After breakfast: Dexamethasone
Ondansatron
Walk
At least one hour before lunch: Temozolomide
Sleep
Lunch
Potter
Collect Martha and Katy from school
Tea
Ondansatron
Flu Jab - yes, I must have a flu jab in three weeks when I have completed the first phase of chemotherapy.
I also agreed to take part in a research study. They are trying to find possible causes of brain tumours. I filled in a questionnaire and gave a blood sample.
Wish me luck over the next five days!
This is what I learned:
- I take 250 mcg Temozolomide every day for 5 days. This is chemotherapy, and double my previous dose.
- My next appointment is 13th November.
- I then repeat the 5 day chemotherapy.
- This pattern continues for 6 months.
- Ondansatron twice a day - anti sickness drugs, with
- Metoclopramide as a back up anti-sickness drug
- Omeprazole - stomach protector
- Dexamethasone - steroid (0.5 mcg)
Before breakfast: Omeprazole
Breakfast
After breakfast: Dexamethasone
Ondansatron
Walk
At least one hour before lunch: Temozolomide
Sleep
Lunch
Potter
Collect Martha and Katy from school
Tea
Ondansatron
Flu Jab - yes, I must have a flu jab in three weeks when I have completed the first phase of chemotherapy.
I also agreed to take part in a research study. They are trying to find possible causes of brain tumours. I filled in a questionnaire and gave a blood sample.
Wish me luck over the next five days!
Tuesday, 15 October 2013
All Ok
Sorry, it is too late to write tonight. I am feeling well. I have had a busy night with Martha and Katy. Martha has her audition tomorrow; Katy has had friends over to play and been to swimming club. I will write more, tomorrow.
love
Sarah xxx
love
Sarah xxx
Questions for Dr McBain
Appointment with Dr Karabatsou (next week) - my surgeon
- I still have a sore jaw, and cannot open it properly. Should I go to this appointment to discuss this?
- Will I regain the feeling in my scalp. It remains numb.
Appointment with Dr McBain
- Steroid reduction: now on 0.5mcg. Gain agreement that I manage the reduction in steroids.
- Macmillan Nurse supporting me - Andrew Evanson
- What are expected side effects of chemotherapy programme?
- Running out of steroids and stomach protectors - can I get a prescription at Christies?
- flu jab - can I get one?
Monday, 14 October 2013
Trafford Centre on the bus
Martha gets up at 6.30 am for a shower and nit check. We have a nice morning together, a hot chocolate and breakfast. Katy is the late riser today.
John Lewis Fan
We all walk to school together and then I go to get the bus to the Trafford Centre. In John Lewis, I exchange Katy's shoes. I also ask for a chain for my blind, and I am given one free-of-charge. I head home having spent nothing except my bus fare.
I mend my blind
I have a sleep. I wake to fit my chain, and I cannot wait to sleep tonight. My blind has only half-closed for months. There is a street light at the end of my cul-de-sac that shines through the gap. Tonight there will be no gap. Fantastic!
Katy's boots arrive
Katy's football boots arrive. She ordered these on line, using her trumpet money. She has not yet got a place in the trumpet group, sadly. Here she is, very happy with her boots. She is excited to play football in the tournament, this Thursday. I am hoping to go and watch, if I can get a lift there.
Martha has been working hard tonight on her news journal.
Chemotherapy starts again on Wednesday
I am building up to my visit to see my consultant. I start chemotherapy on Wednesday. Let's hope that the side effects are minimal. I will do another page on questions to ask at this session.
Have a good week
loads of love
Sarah xxxx
Sunday, 13 October 2013
Quiet Sunday
Not surprisingly, I have been tired today. My day has been a simple blend of cooking meals, doing the washing, sleeping and nit checking. It peaks in the evening with Katy getting timed in a swimming club gala. Martha was not well enough to join in.
Steroids
I feel OK. I think I am through the dip that comes with reducing my steroid dose. I am pleased about this, because it shows me that my body can adjust, and produce the steroids that I need to be able to function properly. I am going to reduce my steroids again tomorrow, to 0.5 mcg. We have a trip to London on Halloween, and I do not want to be in a dip at that stage; I want to feel good for the journey and our activities. My plan is to drop to 0.5 mcg tomorrow. I go for my chemotherapy appointment on Wednesday. I will discuss this drop with my consultant at this appointment, and if she thinks it is ok, I will continue on 0.5 mcg; if she doesn't think I should be cutting down right now, then I will increase it again to 0.75 mcg. I don't know if that makes sense to you, but it does to me :) I have discussed this with my Macmillan nurse.
Sleeping long
I sleep for a couple of hours today. I could have stayed asleep for a lot longer, but there is a limit to the amount of time that two girls can stay quiet. I am woken by Katy printing from my PC. She has made me a beautiful picture of a rainbow over the sea, with "Mum" written through it.
Homework
Martha has finished her homework for the weekend (phew). She has not kept up to date with her news journal. She is nearly a week behind with this. She has to keep a news journal for a month. She continues to have a terrible cough.
Wishing you all a good week
loads of love
Sarah xxx
Steroids
I feel OK. I think I am through the dip that comes with reducing my steroid dose. I am pleased about this, because it shows me that my body can adjust, and produce the steroids that I need to be able to function properly. I am going to reduce my steroids again tomorrow, to 0.5 mcg. We have a trip to London on Halloween, and I do not want to be in a dip at that stage; I want to feel good for the journey and our activities. My plan is to drop to 0.5 mcg tomorrow. I go for my chemotherapy appointment on Wednesday. I will discuss this drop with my consultant at this appointment, and if she thinks it is ok, I will continue on 0.5 mcg; if she doesn't think I should be cutting down right now, then I will increase it again to 0.75 mcg. I don't know if that makes sense to you, but it does to me :) I have discussed this with my Macmillan nurse.
Sleeping long
I sleep for a couple of hours today. I could have stayed asleep for a lot longer, but there is a limit to the amount of time that two girls can stay quiet. I am woken by Katy printing from my PC. She has made me a beautiful picture of a rainbow over the sea, with "Mum" written through it.
Homework
Martha has finished her homework for the weekend (phew). She has not kept up to date with her news journal. She is nearly a week behind with this. She has to keep a news journal for a month. She continues to have a terrible cough.
Wishing you all a good week
loads of love
Sarah xxx
Saturday, 12 October 2013
No sleep today :)
I have had a busy day today.
Visit to Liverpool
Dave took us over to see his Mum this morning. We had a good morning together, enjoyed doing a puzzle and had a roast dinner. Joan seems to be very happy at the moment; her back garden looks amazing.
Chill Factore
Martha is not well. She is on antibiotics. She was crying before we left, has dozed in the car, and been tired at Nanna's. We dropped her off at the Chill Factore on the way back, and she was anxious and crying there. I had to stay with her to give her the confidence to enjoy the party. It all worked out well, but took a big chunk out of the day.
At this point, I am feeling like a sleep, but it is not possible. Dave has gone home, and Katy and I are going to go back to Chorlton on the bus from the Trafford Centre.
Katy gets new shoes (nearly)
In the Trafford Centre, I get Katy's feet measured because she has blisters from her new shoes. The shop assistant agrees that she has been sold shoes that are too small, and the manager agrees to replace them. The only problem is that I forgot to take the shoes! I have another trip to the Trafford Centre to achieve next week, to pick up her new shoes. It is worth shopping in John Lewis!
Katy buys some slippers in Marks and Spencer, on the way back to the bus. They really suit her.
Becoming a bus lover...
The bus trip home was fine. It doesn't take much longer than finding the car and driving home. I will get to love the bus!
So, now, I feel very tired. I have a mild tummy ache, which I also had last night. My headache is very mild. However, on the whole, I feel very pleased with my day.
Have a good weekend
lots of love
Sarah xxx
Visit to Liverpool
Dave took us over to see his Mum this morning. We had a good morning together, enjoyed doing a puzzle and had a roast dinner. Joan seems to be very happy at the moment; her back garden looks amazing.
Chill Factore
Martha is not well. She is on antibiotics. She was crying before we left, has dozed in the car, and been tired at Nanna's. We dropped her off at the Chill Factore on the way back, and she was anxious and crying there. I had to stay with her to give her the confidence to enjoy the party. It all worked out well, but took a big chunk out of the day.
At this point, I am feeling like a sleep, but it is not possible. Dave has gone home, and Katy and I are going to go back to Chorlton on the bus from the Trafford Centre.
Katy gets new shoes (nearly)
In the Trafford Centre, I get Katy's feet measured because she has blisters from her new shoes. The shop assistant agrees that she has been sold shoes that are too small, and the manager agrees to replace them. The only problem is that I forgot to take the shoes! I have another trip to the Trafford Centre to achieve next week, to pick up her new shoes. It is worth shopping in John Lewis!
Katy buys some slippers in Marks and Spencer, on the way back to the bus. They really suit her.
Becoming a bus lover...
The bus trip home was fine. It doesn't take much longer than finding the car and driving home. I will get to love the bus!
So, now, I feel very tired. I have a mild tummy ache, which I also had last night. My headache is very mild. However, on the whole, I feel very pleased with my day.
Have a good weekend
lots of love
Sarah xxx
Out for the evening :)
Trafford pals come over
My old pals from Trafford head over for an early tea at Yakisoba. Don joins us, too, which is fab. He is very funny company. Belinda was hilarious too, with her baby development app. on her iphone. Seven month old baby Ciaus is developing well :)
I enjoy the evening, but I am ready for bed by 8 pm! We have a cuppa tea, and then I get my head down. I forgot to ask about the Flixton Girls' Alumni Dinner. We were all based in the school, so I wonder who else has been invited.
Morning Walk
I have a longer meadow walk today. I also take some books to Oxfam, drop ebay parcels at the post office, and I am delighted to buy Martha a walking cane for her Willy Wonka audition costume - in Age Concern.
Sleep and then Katy comes home with Dave. Martha has gone to the park with year 6 pals, straight from school. She is breaking into her own independence. She comes home at agreed time - a good start for me as her mum.
Good night all
love
Sarah xxx
My old pals from Trafford head over for an early tea at Yakisoba. Don joins us, too, which is fab. He is very funny company. Belinda was hilarious too, with her baby development app. on her iphone. Seven month old baby Ciaus is developing well :)
I enjoy the evening, but I am ready for bed by 8 pm! We have a cuppa tea, and then I get my head down. I forgot to ask about the Flixton Girls' Alumni Dinner. We were all based in the school, so I wonder who else has been invited.
Morning Walk
I have a longer meadow walk today. I also take some books to Oxfam, drop ebay parcels at the post office, and I am delighted to buy Martha a walking cane for her Willy Wonka audition costume - in Age Concern.
Sleep and then Katy comes home with Dave. Martha has gone to the park with year 6 pals, straight from school. She is breaking into her own independence. She comes home at agreed time - a good start for me as her mum.
Good night all
love
Sarah xxx
Thursday, 10 October 2013
Crunchy leaves
Faster morning walk
A much cooler day today, but still in bright sunshine, I enjoyed my walk around the meadows. I must change the direction of the walk - I was squinting into bright low sunlight. If I reverse the route, the sun will be behind me.
Generally, I am feeling much better as each day passes.
Martha gets antibiotics from Dr Sabeti
I have a double appointment with Dr Sabeti. She checks out Martha's cough, and checks it isn't anything more serious. I don't like Martha or Katy taking antibiotics, but I have to agree to Martha taking them. She hasn't been able to shake off a horrid loose cough.
New sick note
For me, I am given a three month sick note. I feel sad about this, but I have to follow advice. I think I was barking mad to think I would be able to go back to work after October half term. I am now aiming for a New Year restart.
I asked about my letter to the Primary Care Manager. Dr Sabeti was surprised that I had not received an acknowledgement letter, but was immediately able to locate and print the letter. I am content that the letter had been written before I got there.
My other matter is my travel insurance claim. I am told that the Primary Care Manager will call me about it.
Long sleep
Katy's football tournament is cancelled
Katy and her football team are taken by three teachers to a school on the other side of Manchester. When they get there, they find out that the tournament has been cancelled. All the other schools had been advised of this, and Chorlton CE had been forgotten. A simple mistake has been made, that has affected parents, teachers and children. Luckily, Katy seems OK about it.
Martha enjoyed comedy club. At home she has carried on practising for her Charlie and the Chocolate Factory audition. I have been asked to be Simon Cowell, and give her really tough feedback. She is quite amazing, but I found her some things to improve. She has done some of her homework too. Katy has done some great literacy work tonight, describing an image of a sphinx in a desert.
Have a good day tomorrow
love
Sarah XXX
A much cooler day today, but still in bright sunshine, I enjoyed my walk around the meadows. I must change the direction of the walk - I was squinting into bright low sunlight. If I reverse the route, the sun will be behind me.
Generally, I am feeling much better as each day passes.
Martha gets antibiotics from Dr Sabeti
I have a double appointment with Dr Sabeti. She checks out Martha's cough, and checks it isn't anything more serious. I don't like Martha or Katy taking antibiotics, but I have to agree to Martha taking them. She hasn't been able to shake off a horrid loose cough.
New sick note
For me, I am given a three month sick note. I feel sad about this, but I have to follow advice. I think I was barking mad to think I would be able to go back to work after October half term. I am now aiming for a New Year restart.
I asked about my letter to the Primary Care Manager. Dr Sabeti was surprised that I had not received an acknowledgement letter, but was immediately able to locate and print the letter. I am content that the letter had been written before I got there.
My other matter is my travel insurance claim. I am told that the Primary Care Manager will call me about it.
Long sleep
Katy's football tournament is cancelled
Katy and her football team are taken by three teachers to a school on the other side of Manchester. When they get there, they find out that the tournament has been cancelled. All the other schools had been advised of this, and Chorlton CE had been forgotten. A simple mistake has been made, that has affected parents, teachers and children. Luckily, Katy seems OK about it.
Martha enjoyed comedy club. At home she has carried on practising for her Charlie and the Chocolate Factory audition. I have been asked to be Simon Cowell, and give her really tough feedback. She is quite amazing, but I found her some things to improve. She has done some of her homework too. Katy has done some great literacy work tonight, describing an image of a sphinx in a desert.
Have a good day tomorrow
love
Sarah XXX
Wednesday, 9 October 2013
Charlie and the Chocolate Factory
Willy Wonka
The big news of today is that the year 6 Christmas production will be Charlie and the Chocolate Factory. Martha is a budding actor, who has already started preparing herself for the audition. She has to sing "Pure Imagination". This is the song that Willy Wonka sings as they enter the giant room with the chocolate river, and trees that are made of "candy". The timing is very tricky. Her teacher is definitely trying to test their ability to perform. The auditions are next week, so watch out! I will be singing the song too...
Faster walk
I made it out for my walk. The bank of the Mersey is decorated with beautiful purple flowers.
Macmillan nurse
My Macmillan nurse came, and we had a good talk. He keeps reminding me that it is only 4 months since my diagnosis, and that I have been through a lot of trauma in between then and now. I am going to stay on 0.75 mcg steroids for another week, and make sure I am settled at this level. I will then cut it down to 0.5 mcg, all being well. The signs are good. I am definitely feeling a lot better today. My eye remains swollen, but my activity levels are higher than they have been.
I have realised that I cannot go back to work after half term. I am nowhere near ready to start work. It seems crazy that I thought I would be able to go back. I have (finally) got a doctor's appointment, one for me and one for Martha (ongoing loose cough). Katy's knee is fine now. I will be collecting another sick note.
Harvest
I went to see the Harvest Service at school. Year 4 performed the service, and Katy sang in the choir. Year 4 look so grown up. Last year, they were so little. Martha looks really old, now that she is in year 6. It was an enjoyable school event.
Rehearsals
So, my evening at home has been a bit of pottering, while Martha rehearses; Katy has been doing the computer for her and giving very constructive advice. Katy also went and found her a Willy Wonka outfit. When invited, I have watched Martha perform. She doesn't know all the words confidently yet, but her performance is very powerful. She has a gift for engaging her audience with looks and moves. By next week, she will know all the words and will be able to produce a memorable performance.
Thanks also to Diane for Groundhog Day. We will all watch it together.
Have a good day tomorrow.
lots of love
Sarah xxx
The big news of today is that the year 6 Christmas production will be Charlie and the Chocolate Factory. Martha is a budding actor, who has already started preparing herself for the audition. She has to sing "Pure Imagination". This is the song that Willy Wonka sings as they enter the giant room with the chocolate river, and trees that are made of "candy". The timing is very tricky. Her teacher is definitely trying to test their ability to perform. The auditions are next week, so watch out! I will be singing the song too...
Faster walk
I made it out for my walk. The bank of the Mersey is decorated with beautiful purple flowers.
Macmillan nurse
My Macmillan nurse came, and we had a good talk. He keeps reminding me that it is only 4 months since my diagnosis, and that I have been through a lot of trauma in between then and now. I am going to stay on 0.75 mcg steroids for another week, and make sure I am settled at this level. I will then cut it down to 0.5 mcg, all being well. The signs are good. I am definitely feeling a lot better today. My eye remains swollen, but my activity levels are higher than they have been.
I have realised that I cannot go back to work after half term. I am nowhere near ready to start work. It seems crazy that I thought I would be able to go back. I have (finally) got a doctor's appointment, one for me and one for Martha (ongoing loose cough). Katy's knee is fine now. I will be collecting another sick note.
Harvest
I went to see the Harvest Service at school. Year 4 performed the service, and Katy sang in the choir. Year 4 look so grown up. Last year, they were so little. Martha looks really old, now that she is in year 6. It was an enjoyable school event.
Rehearsals
So, my evening at home has been a bit of pottering, while Martha rehearses; Katy has been doing the computer for her and giving very constructive advice. Katy also went and found her a Willy Wonka outfit. When invited, I have watched Martha perform. She doesn't know all the words confidently yet, but her performance is very powerful. She has a gift for engaging her audience with looks and moves. By next week, she will know all the words and will be able to produce a memorable performance.
Thanks also to Diane for Groundhog Day. We will all watch it together.
Have a good day tomorrow.
lots of love
Sarah xxx
Tuesday, 8 October 2013
Groundhog day
Groundhog Day
Someone has sent me a copy of Groundhog day. Thank you very much. My life at the moment is very like the film. Every day has a similar pattern. Drugs, breakfast, breakfast for Martha and Katy, walk to school, go for a walk, have a sit down, go to sleep, go back to school, tea and clubs, homework/reading, bed. In Groundhog style, maybe I can work my way back to not having cancer. Ok, I'll settle for a handsome man instead! :)
Walk
I am feeling a lot better today. Anna and I went for a walk together this morning, and we were both delighted with how we got on. I was feeling much more physically able.
At home, I have rested and then done a little housework. I am turning into a housewife! When you are at home, and unwell, you can use up 30 awake minutes here and there, doing little jobs. Today, I put a pile of things for the charity shop into my new shopping trolley bag. My aim is to take this to the charity shop next trip out.
Sleep
Back to Groundhog day - sleep.
Pick up girls from school
Pick up three girls from school; Martha is taking her friend Anya to drama club, on a take-a-friend day. I hear about Martha and Anya's day - they have been teaching all the year groups across the school. Martha has been teaching numeracy using leaves. It has been a beautiful day, so perfect for working outside.
I then leave Martha and Anya at home, and take Katy to see asthma nurse. Katy is doing very well, and knows how to use her inhalers properly. Katy was given an anti-flu injection, which then lead to her choosing not to go swimming. She has a sore arm and feels under the weather. Her knee has recovered, I am very glad to say. She can't wait to play in the girls football league on Thursday - she is counting down to it.
Books and bed.
Handsome Man?
Groundhog Day: no handsome man yet. Maybe tomorrow!
Hope the sun is still shining tomorrow. I can't believe I have been wearing only a t-shirt outdoors this afternoon. It was really hot. I did wonder, was it hot, or did I have a fever? It was definitely hot.
I am feeling a lot better:)
Enjoy your week
love
Sarah xxx
Someone has sent me a copy of Groundhog day. Thank you very much. My life at the moment is very like the film. Every day has a similar pattern. Drugs, breakfast, breakfast for Martha and Katy, walk to school, go for a walk, have a sit down, go to sleep, go back to school, tea and clubs, homework/reading, bed. In Groundhog style, maybe I can work my way back to not having cancer. Ok, I'll settle for a handsome man instead! :)
Walk
I am feeling a lot better today. Anna and I went for a walk together this morning, and we were both delighted with how we got on. I was feeling much more physically able.
At home, I have rested and then done a little housework. I am turning into a housewife! When you are at home, and unwell, you can use up 30 awake minutes here and there, doing little jobs. Today, I put a pile of things for the charity shop into my new shopping trolley bag. My aim is to take this to the charity shop next trip out.
Sleep
Back to Groundhog day - sleep.
Pick up girls from school
Pick up three girls from school; Martha is taking her friend Anya to drama club, on a take-a-friend day. I hear about Martha and Anya's day - they have been teaching all the year groups across the school. Martha has been teaching numeracy using leaves. It has been a beautiful day, so perfect for working outside.
I then leave Martha and Anya at home, and take Katy to see asthma nurse. Katy is doing very well, and knows how to use her inhalers properly. Katy was given an anti-flu injection, which then lead to her choosing not to go swimming. She has a sore arm and feels under the weather. Her knee has recovered, I am very glad to say. She can't wait to play in the girls football league on Thursday - she is counting down to it.
Books and bed.
Handsome Man?
Groundhog Day: no handsome man yet. Maybe tomorrow!
Hope the sun is still shining tomorrow. I can't believe I have been wearing only a t-shirt outdoors this afternoon. It was really hot. I did wonder, was it hot, or did I have a fever? It was definitely hot.
I am feeling a lot better:)
Enjoy your week
love
Sarah xxx
Monday, 7 October 2013
On the mend, I think
Under the weather
I am still upset about my car. It represents the changes in my life, at the moment. I am annoyed that someone has parked outside my house! Around this, I feel generally "off colour". I think it is the steroids. However, I am going to persist at taking 0.75 mcg. I don't feel too ill to carry on with it. Hopefully, my body will start to create the steroids that I need to improve my general well being. The occasional puffiness of my left eye makes me very tearful. My Macmillan nurse will come back on Wednesday to check how I am getting on.
I went for a morning walk
My walking style is that I am looking for somewhere to sit down and have a rest. I have not sat down at all, but my mind is not walking freely. I am out of breath when my pace is less than a dawdle. I walked through Longford Park today, to go to Barbakhan (Polish deli) to pick up a loaf of bread and a packed lunch for Martha. I forgot that she was going on a trip today to see Jackie Kay (a poet) at the Royal Exchange Theatre. She really liked her lunch - easy to please, with a ham sandwich, chocolate cake and a smoothie.
Bed for me. I just get to sleep and my mobile rings with a call from "Look Good Feel Better". This is a service from Christie Hospital that I have been told to make the most of. You go to a make up workshop and get sent home with loads of high brand freebies. I accepted the appointment for tomorrow, put the phone down, and looked at my diary; I realised that there is no way that I could go - Katy has an asthma appointment tomorrow that we have been waiting for since the Sunflower incident at the end of August. I have had to decline the appointment, and postpone it. I am told my appointment will be in the New Year. Let's wait and see. I hope to be back in work by then.
I switch my phone off and sleep until 2pm.
I pick Martha up at 3pm and bravely leave Katy for football club. She is moving normally when she gets home, so I think her knee is now settling well. I am keeping up the ibuprofen. Martha and I have a good evening while Katy is at cubs - Martha writes a poem about a canal (three times spelt cannal (ha ha)) - it is really quite moving. She then catches up with her news journal. Every day, she is writing news into her journal. The school guidance is to do this for a whole month, and she is determined to do a piece a day. I want her to be less thorough ...
My 40s looking scarf
I have never been good at tying scarves! Here is the 40s look. A bit better than yesterday!
Have a good day everyone
lots of love
Sarah xxx
I am still upset about my car. It represents the changes in my life, at the moment. I am annoyed that someone has parked outside my house! Around this, I feel generally "off colour". I think it is the steroids. However, I am going to persist at taking 0.75 mcg. I don't feel too ill to carry on with it. Hopefully, my body will start to create the steroids that I need to improve my general well being. The occasional puffiness of my left eye makes me very tearful. My Macmillan nurse will come back on Wednesday to check how I am getting on.
I went for a morning walk
My walking style is that I am looking for somewhere to sit down and have a rest. I have not sat down at all, but my mind is not walking freely. I am out of breath when my pace is less than a dawdle. I walked through Longford Park today, to go to Barbakhan (Polish deli) to pick up a loaf of bread and a packed lunch for Martha. I forgot that she was going on a trip today to see Jackie Kay (a poet) at the Royal Exchange Theatre. She really liked her lunch - easy to please, with a ham sandwich, chocolate cake and a smoothie.
Bed for me. I just get to sleep and my mobile rings with a call from "Look Good Feel Better". This is a service from Christie Hospital that I have been told to make the most of. You go to a make up workshop and get sent home with loads of high brand freebies. I accepted the appointment for tomorrow, put the phone down, and looked at my diary; I realised that there is no way that I could go - Katy has an asthma appointment tomorrow that we have been waiting for since the Sunflower incident at the end of August. I have had to decline the appointment, and postpone it. I am told my appointment will be in the New Year. Let's wait and see. I hope to be back in work by then.
I switch my phone off and sleep until 2pm.
I pick Martha up at 3pm and bravely leave Katy for football club. She is moving normally when she gets home, so I think her knee is now settling well. I am keeping up the ibuprofen. Martha and I have a good evening while Katy is at cubs - Martha writes a poem about a canal (three times spelt cannal (ha ha)) - it is really quite moving. She then catches up with her news journal. Every day, she is writing news into her journal. The school guidance is to do this for a whole month, and she is determined to do a piece a day. I want her to be less thorough ...
My 40s looking scarf
I have never been good at tying scarves! Here is the 40s look. A bit better than yesterday!
Have a good day everyone
lots of love
Sarah xxx
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