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
Tuesday, 20 August 2013
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
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
My hair is falling out
Yes, I have woken in the night and run my hand through my hair. Loads of it is coming out. I am not worried about having bald patches for a while - as you know, I have very thick hair. It will be some time before I have bald patches. However, it is time to start using a scarf or hat, I think. It is time to look girly!
love
Sarah xxx
love
Sarah xxx
Sunday, 18 August 2013
Wheat free sugar free blackberry tarts
Wheat free sugar free blackberry tarts
Martha and Katy - this is what the tarts look like. They look delicious, and taste delicious. However, the pastry has not bound properly, and they fall apart and crumble up. I will make you proper wheat based pastry tomorrow, so that you can eat a light and crunchy tart. There are loads of blackberries left.
Louise in triathalon
Here is Louise taking a 90 degree bend in style, on the new bike.
Have a good day tomorrow
lots of love
Sarah Xxxx
Saturday, 17 August 2013
The blackberries are ripening up
The Blackberries are ripening up
Here they are - delicious bulbous berries, that fall apart in your hands. I did my long walk, and collected berries on the way. I see the berries every day, and was amazed that someone had been collecting before me. I picked above dog wee height and away from the nettles. One sting only. They will become blackberry tarts tomorrow (Martha and Katy's choice).
Celebration
I know I am turning into my Granny, but I want to celebrate Andy Murray's success at Wimbledon, so I have bought the Wimbledon set of stamps. I also discovered in Herm, that there has been a recent set of covers with pictures of Herm on them. Last night, I framed them both.
Dehydrator
I have looked at the dehydrator, but have not ordered it yet. I will order it when I have talked to Helen. I have ordered a cook book with recipes in it that I can use.
Martha and Katy are at Dave's mum's
We have talked plenty on the phone, and they are both having a good time. Today, they have been shopping in Liverpool. Katy has a pair of new crocs, and is excited about this. They went to see Uncle Paul at Mellow Mellow, had a good time, but left to eat at Subway. They helped make a sign that said GF on it, which they thought meant Good Food; but no, it means Gluten Free - ideal for me!
Today
I had a sleep after my walk and blackberry hunt. I then enjoyed pottering around my bedroom. I have cleared and cleaned my desk, in tray and organised my stationery. Bit by bit, my room is taking good shape. My next job is to put my key papers into filing cabinet.
An old friend of mine from Trafford came round. It was great to see her, and her son, Finlay, who is moving into year 1. I know we will keep in touch. Thanks for the lift, Hannah.
At Dave's house
I am going to watch Louise compete in her first triathalon, tomorrow morning. Louise and I are staying at Dave's for the night, so that she can get an early start. For me, it means that I can get out to watch her swim in the quays, by walking from Dave's.
Have a great day everyone
lots of love
Sarah xxx
Friday, 16 August 2013
What radiotherapy is like
Today, my appointment time was changed. I agreed to go in the afternoon to suite 7. I am usually in suite 5. I had the same radiotherapists, but in a different room.
The scanner looked exactly the same, as in suite 5.
It is a big circular shape that stands behind a long thin table. The table is separate from it, and the big circle rises up from the floor. The circle is solid. It looks like something out of Doctor Who. The radiotherapists are the evil creatures who sneak out of the room to zap me while I am not looking.
The scanner is large and has circular glass panels. It is nearly ceiling high. It is a big circle standing one the floor.
There is also a smaller scanner. At the beginning of radio therapy, it is a circle about 2 feet wide that lies above my head. I am lying on the table, and my head is screwed to a polyurathane neck mould. It is an artificial yellow mould that I put my head into at the start of the process. The radiotherapists than add my "shield" (the mask) and screw it around the mould. The mould keeps my eyes closed, but I can peak and see the circular scanner above me.
The radiotherapists then begin measuring everything.
"93.2"
"Good, move 1.3"
I get shunted.
"94.5"
"Good"
They measure a few different places, and then leave the room.
In suite 5 there is a CD player, so I play by ipod. We were in the middle of Jazz (Queen), Fat Bottom Girls, I think. However, in suite 7 there is no CD player. This means that I listen to the scanner.
What I can see through my eye lids is blue flashing light. The small scanner has moved - it is to my left hand side. The radiotherapists have left the room. The scanner sounds like a spirograph. Imagine someone is drawing a circular pattern, with a blue lazer pen, using the plastic circle and outer shape. The sound of someone doing this really fast. This is the sound of the scanner. The pattern is what I imagine is being projected into my brain. The aim is to stop the tumour from growing.
The scanner stops, and then it starts again, from another angle. I think a different sized circle is being used, and the pen goes round really fast, and all the teeth grind to make a high pitched sound.
Three different scans occur like this. Then the radiotherapists return, and I am rotated 90 degrees or so, and re-measured for other scans. More scans continue. If there really was a pen, there are at least two spaces on my scalp that would be painted blue.
These are the parts of my skull that are really sore. It does feel like a burn, and I think I am at the early stages of hair loss - just the odd few hairs are dropping out here and there.
And then a radiotherapist appears and says "all done" and unclips my mask.
I always say thank you, which they find funny. I can't imagine what their job is like, scanning people like me all day. It must be hard going.
We all wish each other a good weekend.
The scanner looked exactly the same, as in suite 5.
It is a big circular shape that stands behind a long thin table. The table is separate from it, and the big circle rises up from the floor. The circle is solid. It looks like something out of Doctor Who. The radiotherapists are the evil creatures who sneak out of the room to zap me while I am not looking.
The scanner is large and has circular glass panels. It is nearly ceiling high. It is a big circle standing one the floor.
There is also a smaller scanner. At the beginning of radio therapy, it is a circle about 2 feet wide that lies above my head. I am lying on the table, and my head is screwed to a polyurathane neck mould. It is an artificial yellow mould that I put my head into at the start of the process. The radiotherapists than add my "shield" (the mask) and screw it around the mould. The mould keeps my eyes closed, but I can peak and see the circular scanner above me.
The radiotherapists then begin measuring everything.
"93.2"
"Good, move 1.3"
I get shunted.
"94.5"
"Good"
They measure a few different places, and then leave the room.
In suite 5 there is a CD player, so I play by ipod. We were in the middle of Jazz (Queen), Fat Bottom Girls, I think. However, in suite 7 there is no CD player. This means that I listen to the scanner.
What I can see through my eye lids is blue flashing light. The small scanner has moved - it is to my left hand side. The radiotherapists have left the room. The scanner sounds like a spirograph. Imagine someone is drawing a circular pattern, with a blue lazer pen, using the plastic circle and outer shape. The sound of someone doing this really fast. This is the sound of the scanner. The pattern is what I imagine is being projected into my brain. The aim is to stop the tumour from growing.
The scanner stops, and then it starts again, from another angle. I think a different sized circle is being used, and the pen goes round really fast, and all the teeth grind to make a high pitched sound.
Three different scans occur like this. Then the radiotherapists return, and I am rotated 90 degrees or so, and re-measured for other scans. More scans continue. If there really was a pen, there are at least two spaces on my scalp that would be painted blue.
These are the parts of my skull that are really sore. It does feel like a burn, and I think I am at the early stages of hair loss - just the odd few hairs are dropping out here and there.
And then a radiotherapist appears and says "all done" and unclips my mask.
I always say thank you, which they find funny. I can't imagine what their job is like, scanning people like me all day. It must be hard going.
We all wish each other a good weekend.
Katy makes a juice
Good morning
It is starting to get lighter much later now. Dawn is around 5.45 am. I don't hear the birds singing, like I did in early August. I am unsure if that is that they don't sing, or if it is because I have my windows closed. Katy's asthma is kicking off, which means that Autumn is starting - her asthma is always at its worst as summer changes into the next season. It then settles down into a mild irritant as winter progresses.
Busy morning
Every day, I have arranged for Martha and Katy to play with a friend, while I go to the hospital. Yesterday, Mum driving, we pick up Martha at 9am from her friend Sasha's (after a sleepover), and take both girls to Charlie's to play, so that I can get to a 10.30 appointment at Christie's.
Before we go, I make Katy pancakes, as part of her sleepover with me. I give her one in bed, which she really enjoys. I don't make it out for my walk - there is not enough time this morning.
So, the girls are playing at Charlie's. I go to the hospital. I have not eaten anything - I have only drunk water. I have my pills in my bag, so that I get my drugs correct.
Today, I plan to put all my drugs in a dispenser to see if this helps me to keep on top of them. I have also programmed my phone to give me reminders.
My appointment is late
When at Christies, we are told that the scanner is 30 minutes behind schedule. I have to wait, and it turns out that I am sent in before the person with the 10.10 appointment.
Poorly afternoon
Returning from Christies, I feel really nauseous again. I take the anti-sickness pills and wait for them to work. At home, I make and eat lunch, hoping this will push away the nausea, but I still feel sick. I lie down and hope it passes, and basically doze for a couple of hours. My mum goes to collect the girls from Charlie's. My mum is waiting to head home to Bristol for the weekend.
Martha melts down
Martha and Katy are going to stay with Dave's mum, today until Wednesday. Martha does not want to go, because she wants to stay here with me. I know that when she gets there, she will have a good time. However, Martha is very upset and crying that she doesn't want to go. Why should she go? Why can't she stay here with me? I don't want her to go, either, but have to be firm that this is the best of our ideas, and we talk about using the phone to talk.
If I could drive, I could visit them. I can get the train over there, but I would not risk moving away from my support team over here. The district nurse visited today, and I can see how I need their support as I move through the treatment programme.
Sasha drops by
While Martha is upset, her friend Sasha comes over with her bike and pj bottoms. Martha will not get up to see her, and I tell Sasha, and Anna and Jon, that Martha is very upset about going away. They understand very well. Sasha returns a little later with a dark chocolate macaroon, as a gift for Martha. It is so thoughtful. Martha accepts the visit and the gift, and enjoys the macaroon. She loves dark chocolate. Thank you Sasha.
Katy makes a smoothy
I am starting to function much better. I had made the girl's a lasagne. My mum had polished of three portions, and Martha and Katy ate all of the rest. Eaten with sugar snap peas, I am happy that they are both eating well.
Katy makes her first juice.
Katy making a carrot and apple juice. She is really enjoying using the juicer.
Love Film
I signed up for a free trial with love film, mainly so that Martha can pick up instant films on her Kindle Fire HD. I have got it working through my lap top, but failed to get it to work through the kindle. Over the last few days, I have spent a long time on help lines to Love Film and Amazon, trying to sort this out. We have cancelled accounts, discovered that Dave's visa card is logged in to Martha's account, I have changed the name of my account to Martha, so I am answering all calls in her name etc etc. I still haven't got it going, and am very frustrated, because Martha would have used this service at Joan's. The good news is that my free trial is now two months long, but if I don't get it working, then it is no trial at all...
At the end of the day, I am feeling much better. Martha and Katy are packed for their trip away and watching The Smurfs on love film (on lap top) in my bed. Katy has the pleasure of sleeping in her own bed tonight, because Grandma has gone home. Martha wants to come and sleep with me, so when I settle down (after a call with Amazon that does not yield Love Film on the Kindle), I go and get her to come and join me in my bed.
My appointment time has been changed
Today, my morning appointment has been moved to the afternoon. This is good, because it means that I can have breakfast. I am hoping that I will not suffer from nausea in the same way, after my appointment. Let's wait and see... Last time to eat before 1330 appointment will be 0930. My morning will look like this: porage and cup of tea, drink water, get girls out of bed and dressed, give girls breakfast, be ready for Dave to collect at 8am, go for a walk, have second breakfast, set up replacement amazon account (for me); order dehydrator, sort out pills in dispenser tray, get ready to go for appointment on the tram ... I will need a sleep late morning, too.
Love you all
Have a good day
Sarah xxx
Wednesday, 14 August 2013
I get my drugs correct and have a good day
Short and slow morning walk
I wake before six, satisfied with good sleep. A side effect of the anti-nausea injection is drowsiness, which was good for me after many nights of broken sleep. I write my drugs timetable, and BLOG before getting up. I am allowed to eat food today, because I have an afternoon appointment on Wednesday. This corresponds with an appointment with my consultant.
I go for my morning walk. It is a beautiful morning; it is warm and sunny. I am a bit slow, but happy to be out and covering a couple of miles (at the most). For those that know the route, I walk into the meadows up the straight path, then turn left at the red bridge, and head towards home along the stream.
Martha and Katy go out to play with friends
We have a lazy morning. I make Martha an egg white toasted sandwich. Katy enjoys cocoa pops (the Aldi version of course!). I encourage the girls to get ready to go out. Katy gets ready; Martha needs a verbal helping hand. Somehow they have an argument that leads to Katy knocking a pile of Martha's clothes across the floor in her bedroom. I help her put all of these away and ignore Katy. Katy goes to play with Rosy Wilson - Dad picks her up for a picnic in the park. I walk Martha around to Anna's house. Martha is riding her bike, ready for a trip out on bikes. On my way back, I can see Katy sitting in the park having her picnic; I choose not to disturb her.
I receive a beautiful double orchid from my god parents. Thank you so much. (I will add a picture tomorrow).
I have a sleep.
Hospital Appointment
The appointment is very late again. It is tricky because you have to arrive at the correct time. I tell my radiologists that I have taken my drugs correctly today.
After the appointment I meet my specialist nurse, who checks out how I am doing. She has a checklist: any changes to my vision? any headaches? are any of my original symptoms recurring? I tell her about my sickness from the day before, and that I have learned that I have to manage my drugs properly. Friendly, she tells me that many patients have an experience like this during their treatment programme, and she knows that I won't make the same mistake again.
Back home for a rest
I am able to rest when we get home. I have home made butternut squash soup and wheat free ciabbatta, which is delicious. I then settle to watch ARGO. I have signed up to a free trial with Love Film, and this is my first film delivery. I haven't finished watching it yet, but I am really enjoying it.
Katy is home at 6pm and she cooks flap jack, while I cook a lasagne. My mum went to Aldi this morning, so we were stocked up well. Lush Lasagne for dinner tomorrow night.
Thank you all, loads of love
Sarah xxx
I wake before six, satisfied with good sleep. A side effect of the anti-nausea injection is drowsiness, which was good for me after many nights of broken sleep. I write my drugs timetable, and BLOG before getting up. I am allowed to eat food today, because I have an afternoon appointment on Wednesday. This corresponds with an appointment with my consultant.
I go for my morning walk. It is a beautiful morning; it is warm and sunny. I am a bit slow, but happy to be out and covering a couple of miles (at the most). For those that know the route, I walk into the meadows up the straight path, then turn left at the red bridge, and head towards home along the stream.
Martha and Katy go out to play with friends
We have a lazy morning. I make Martha an egg white toasted sandwich. Katy enjoys cocoa pops (the Aldi version of course!). I encourage the girls to get ready to go out. Katy gets ready; Martha needs a verbal helping hand. Somehow they have an argument that leads to Katy knocking a pile of Martha's clothes across the floor in her bedroom. I help her put all of these away and ignore Katy. Katy goes to play with Rosy Wilson - Dad picks her up for a picnic in the park. I walk Martha around to Anna's house. Martha is riding her bike, ready for a trip out on bikes. On my way back, I can see Katy sitting in the park having her picnic; I choose not to disturb her.
I receive a beautiful double orchid from my god parents. Thank you so much. (I will add a picture tomorrow).
I have a sleep.
Hospital Appointment
The appointment is very late again. It is tricky because you have to arrive at the correct time. I tell my radiologists that I have taken my drugs correctly today.
After the appointment I meet my specialist nurse, who checks out how I am doing. She has a checklist: any changes to my vision? any headaches? are any of my original symptoms recurring? I tell her about my sickness from the day before, and that I have learned that I have to manage my drugs properly. Friendly, she tells me that many patients have an experience like this during their treatment programme, and she knows that I won't make the same mistake again.
Back home for a rest
I am able to rest when we get home. I have home made butternut squash soup and wheat free ciabbatta, which is delicious. I then settle to watch ARGO. I have signed up to a free trial with Love Film, and this is my first film delivery. I haven't finished watching it yet, but I am really enjoying it.
Katy is home at 6pm and she cooks flap jack, while I cook a lasagne. My mum went to Aldi this morning, so we were stocked up well. Lush Lasagne for dinner tomorrow night.
Thank you all, loads of love
Sarah xxx
I muck up my drugs programme and get very sick
My day starts very well
I have a brisk morning walk, including a one mile jog from start of meadows to the River Mersey. I do not carry on jogging, because I feel that I should respect my illness and not push myself too far. I feel good.
Martha and Katy go to play at Saskia's
I get Martha and Katy out of bed at 9am and they have to be at Saskia's at 9.40 to allow me to get to my hospital appointment on time. We manage their time well, and take them to Carol. They have their swimming gear with them, money, some cakes, a hoody each...
I remember chemotherapy during my radiotherapy appointment
Whilst I am in my radiotherapy appointment (I am screwed to the bed, and the blue lights are flashing), I remember that I have not taken my chemotherapy tablet. I panic a little, but realise that all I can do is lie there, and tell them at the end.
The radiotherapists contact Charlotte, my specialist nurse, who advises that I take the chemotherapy tablet immediately.
On the way home, I remember that I did not take my antibiotics the day before, either.
I take my stomach protector tablet on the way home, and at home, dig out all the drugs that I have not taken. I space them out and take them all. I do not have the anti-sickness drug that I have been taking, so do not take this, and at no point think that I need to take anti-sickness drugs...
Foot appointment
I have a sleep and then we head off to the Rusholme podiatrist to get insoles made for my shoes. Many of you will know that I have a lump on the bottom of my foot that becomes very painful in proper shoes. An old camping injury! The appointment is on time, and very quick. He advises me against the shoes that I wear, and sends me to Clarks to get something that he can fit insoles into.
I decide to go straight to Clarks and do this now, while the children are playing with friend.
I become sick
I am in Clarks and trying on wide fitting shoes and I become nauseous. This is my first experience of this. I realise that I don't have any drugs with me, and that I do not know what is going to happen next. I tell the assistant that I don't feel well and simply buy the two pairs of shoes that I was trying. I can take them back if they don't fit in the end. At the till, I ask for a spare carrier bag, in case I am sick, and yes, I needed it. I am walking back to meet my Mum, who is waiting in the car, in the Northern Quarter, and throwing up into a carrier bag, in the middle of town. I text her to say that I feel ill, and can she call (she can't here her phone ringer); she rings, but we agree that I have to walk to her, because she doesn't know where she is! At the car, I cannot stop vomiting - it feels endless.
When we get home, I take the anti-sickness drug and lie down. Deep breathing, I try to fend off the nausea, but cannot. I end up vomiting again, and again. I do not know what to do about the drugs, so phone Charlotte, who is not available. I phone the Christie hotline, who advise that I take another tablet, and that if I cannot stop vomiting then I must call my GP to get an injection.
This is what I end up doing, so by 6 pm I have two nurses with me, to give me a very painful injection in my right arm. They were both lovely, and seemed to understand how I could end up in this condition. My yellow folder is filled in.
My mum has gone into caring overdrive. Basically, I feel sick and do not want to be sick. My mum is trying to find ways to help - water, hot water, rice cakes, other biscuits, a cup of tea. All of which I reject (not the water).
My friend Chris starts texting me, in the middle of this, and I have to reply to him and say don't text for a while because I am not well and sleepy.
The side effect of the injection is drowsiness, so I am falling in and out of sleep, and eventually the night passes. I feel OK now. I have just got to get up and start taking the tablets...
So, here is my drugs regime - that I must follow.
I have a brisk morning walk, including a one mile jog from start of meadows to the River Mersey. I do not carry on jogging, because I feel that I should respect my illness and not push myself too far. I feel good.
Martha and Katy go to play at Saskia's
I get Martha and Katy out of bed at 9am and they have to be at Saskia's at 9.40 to allow me to get to my hospital appointment on time. We manage their time well, and take them to Carol. They have their swimming gear with them, money, some cakes, a hoody each...
I remember chemotherapy during my radiotherapy appointment
Whilst I am in my radiotherapy appointment (I am screwed to the bed, and the blue lights are flashing), I remember that I have not taken my chemotherapy tablet. I panic a little, but realise that all I can do is lie there, and tell them at the end.
The radiotherapists contact Charlotte, my specialist nurse, who advises that I take the chemotherapy tablet immediately.
On the way home, I remember that I did not take my antibiotics the day before, either.
I take my stomach protector tablet on the way home, and at home, dig out all the drugs that I have not taken. I space them out and take them all. I do not have the anti-sickness drug that I have been taking, so do not take this, and at no point think that I need to take anti-sickness drugs...
Foot appointment
I have a sleep and then we head off to the Rusholme podiatrist to get insoles made for my shoes. Many of you will know that I have a lump on the bottom of my foot that becomes very painful in proper shoes. An old camping injury! The appointment is on time, and very quick. He advises me against the shoes that I wear, and sends me to Clarks to get something that he can fit insoles into.
I decide to go straight to Clarks and do this now, while the children are playing with friend.
I become sick
I am in Clarks and trying on wide fitting shoes and I become nauseous. This is my first experience of this. I realise that I don't have any drugs with me, and that I do not know what is going to happen next. I tell the assistant that I don't feel well and simply buy the two pairs of shoes that I was trying. I can take them back if they don't fit in the end. At the till, I ask for a spare carrier bag, in case I am sick, and yes, I needed it. I am walking back to meet my Mum, who is waiting in the car, in the Northern Quarter, and throwing up into a carrier bag, in the middle of town. I text her to say that I feel ill, and can she call (she can't here her phone ringer); she rings, but we agree that I have to walk to her, because she doesn't know where she is! At the car, I cannot stop vomiting - it feels endless.
When we get home, I take the anti-sickness drug and lie down. Deep breathing, I try to fend off the nausea, but cannot. I end up vomiting again, and again. I do not know what to do about the drugs, so phone Charlotte, who is not available. I phone the Christie hotline, who advise that I take another tablet, and that if I cannot stop vomiting then I must call my GP to get an injection.
This is what I end up doing, so by 6 pm I have two nurses with me, to give me a very painful injection in my right arm. They were both lovely, and seemed to understand how I could end up in this condition. My yellow folder is filled in.
My mum has gone into caring overdrive. Basically, I feel sick and do not want to be sick. My mum is trying to find ways to help - water, hot water, rice cakes, other biscuits, a cup of tea. All of which I reject (not the water).
My friend Chris starts texting me, in the middle of this, and I have to reply to him and say don't text for a while because I am not well and sleepy.
The side effect of the injection is drowsiness, so I am falling in and out of sleep, and eventually the night passes. I feel OK now. I have just got to get up and start taking the tablets...
So, here is my drugs regime - that I must follow.
6 Fields Brain” –
radiotherapy and chemotherapy programme.
Date
|
Time of appointment
|
Last time to eat
|
Time of anti-sickness tablet
|
Time of chemotherapy tablet
|
Co---trimoxazole (antibiotic)
|
Allowed to eat
|
Omeprazole
(stomach protector)
|
Dexamethazone
(steroid)
|
Mon
|
11 ish
|
Do not eat
|
With each meal
|
10ish
|
Take 2 x 480mg
|
12 ish
|
After appt
|
With lunch
|
Tues
|
11 ish
|
Do not eat
|
With each meal
|
10 ish
|
12 ish
|
After appt
|
With lunch
|
|
Wed
|
2 ish
|
9 ish
|
With each meal
|
1 ish
|
Take 2 x 480 mg
|
3 ish
|
When I get up
|
With breakfast
|
Wed
|
Meet consultant
|
|||||||
Thurs
|
11 ish
|
Do not eat
|
With each meal
|
10 ish
|
12 ish
|
After appt
|
With lunch
|
|
Fri
|
11 ish
|
Do not eat
|
With each meal
|
10 ish
|
Take 2 x 480 mg
|
12 ish
|
After appt
|
With lunch
|
This programme continues until 12 September 2013
Drugs regime
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 2mg every day with food.
Stomach protector Omeprazole Take before food
And finally - Beechwood Cancer Care Centre
Martha and Katy had their first appointment at the centre, for counselling. I am not in any fit state to get them there, so have to phone to cancel the appointment. I am disappointed about this, but the counsellor calls and offers to do a home visit, which will be a good start to the process.
And finally - Beechwood Cancer Care Centre
Martha and Katy had their first appointment at the centre, for counselling. I am not in any fit state to get them there, so have to phone to cancel the appointment. I am disappointed about this, but the counsellor calls and offers to do a home visit, which will be a good start to the process.
Monday, 12 August 2013
Birthday Girl
Gerson Therapy
I don't have a good night's sleep, again. I am awake from 3 ish onwards. I receive an email from Annie Winkley (a good friend of Helen's, who I knew at uni, and lives in USA) - she tells me about Gerson therapy. I have a good browse through youtube and start looking at books. I am hoping to find a book that advises me how to cook meals using a dehydrator (low temp cooker). Gerson therapy advises high raw intake, organic, bean sprouts, masticated juices, but I think it is extreme in its operation eg a fresh juice every two hours. I need to read more about it.
Pancakes for Katy and Rosy
I made pancakes for Katy and Rosy, who delighted in filling them with lemon and sugar, chocolate spread, maple syrup... I am not allowed to eat until after my radiotherapy appointment, and found it ok to do this.
This is Katy and Rosy playing table tennis. The kit was a gift from Louise. The net is an amazing design, that has transformed the table instantly.
My walk
I made it out for a walk, in between rain showers. I had a very nice sunny morning. I cut the walk short because I was out of time, but did enough to feel like it was worthwhile.
Meeting Anna at Christies
We think it is very funny that we are both maths teachers, and now we are both being treated at Christies. Our appointments corresponded today, so Anna was waiting for me in the waiting room. She gave me a birthday card and some cakes too - the card being my first, because we had not had time to focus on my birthday before the appointment. Great to see you, Anna :)
My appointment proceeded as normal. It was very late - I spend an hour waiting, which I have got used to from time to time.
Birthday pressies and cards
Martha and Katy had decorated house with balloons. Martha made me a card that said I was 48. It looks so old. I still feel thirty! Katy made me a beautiful card too. Presents that come to mind are a carafe and glass from Dave, which is perfect for me right now, as I have to drink lots and lots of water. I will fill it with wine one day... Katy and Martha gave me a photo album, and my mum gave me photos of the girls in Herm (and lots of other good gifts). I had lots of other gifts too, which I loved. Margi, Colin and Grace left me a mug that said, "I would rather be down the meadows"; this is true!
Dehydrator
I have an amazing combined gift from a group of friends, which I am very grateful for. I will be getting a dehydrator, which is a low temperature cooker. This means that I will be able to cook food below 43 degrees, and retain all the natural enzymes in the foods. This will help me prevent my cancer from growing, and promote good health and natural resistance to illness. I will be making the order tomorrow, when I have time to do it properly. Thank you all - I really appreciate it.
Gert Lush Salad lunch
Dave, Martha, Katy, Mum and I go to North Star Delicatessen for lunch. Our laugh of the day was that we offered mum the option to share her meal with me, but that she chose to have her own. We both ate a meal for two each. I was starving of course, and I did not feel hungry at all this evening. I had a mediteranean salad with stuffed vine leaves, olives, sundried tomatoes, humous, pitta bread and salad. I also had a butternut squash salad on the side! Delicious. Martha was very disappointed that they did not have lasagne today, and settled for a baked potato. Katy wanted a baked potato.
My sleep
I then go to sleep. I have just woken, when Martha and Katy come home with Dave, to show me their shopping. They have new school bags, which I really liked; they included lunch boxes and fruit bags. Martha has some converse all star style boots.
Birthday cake
I made a wheat free birthday cake. Katy and Martha added candles, lit them, and came into the front room singing Happy Birthday. The cake tasted good too, so we can do this again. My next step is to see if I can make a wheat free and sugar free cake. I need to look up a recipe for this.
Athletics
Our afternoon and evening continues with the athletics. We can't believe how Ohurougu won the 400m. What a brilliant win - she had great mental strength to pull that off!
Louise comes round for the evening
We had a lovely evening with Louise. Great to see you. Louise is into CDs, so we played one of my CDs from Nigel and Sam.
Good night everyone. Thank you for all your texts and messages.
I am hoping to report that I sleep well tonight
love you
Sarah xxx
I don't have a good night's sleep, again. I am awake from 3 ish onwards. I receive an email from Annie Winkley (a good friend of Helen's, who I knew at uni, and lives in USA) - she tells me about Gerson therapy. I have a good browse through youtube and start looking at books. I am hoping to find a book that advises me how to cook meals using a dehydrator (low temp cooker). Gerson therapy advises high raw intake, organic, bean sprouts, masticated juices, but I think it is extreme in its operation eg a fresh juice every two hours. I need to read more about it.
Pancakes for Katy and Rosy
I made pancakes for Katy and Rosy, who delighted in filling them with lemon and sugar, chocolate spread, maple syrup... I am not allowed to eat until after my radiotherapy appointment, and found it ok to do this.
My walk
I made it out for a walk, in between rain showers. I had a very nice sunny morning. I cut the walk short because I was out of time, but did enough to feel like it was worthwhile.
Meeting Anna at Christies
We think it is very funny that we are both maths teachers, and now we are both being treated at Christies. Our appointments corresponded today, so Anna was waiting for me in the waiting room. She gave me a birthday card and some cakes too - the card being my first, because we had not had time to focus on my birthday before the appointment. Great to see you, Anna :)
My appointment proceeded as normal. It was very late - I spend an hour waiting, which I have got used to from time to time.
Birthday pressies and cards
Martha and Katy had decorated house with balloons. Martha made me a card that said I was 48. It looks so old. I still feel thirty! Katy made me a beautiful card too. Presents that come to mind are a carafe and glass from Dave, which is perfect for me right now, as I have to drink lots and lots of water. I will fill it with wine one day... Katy and Martha gave me a photo album, and my mum gave me photos of the girls in Herm (and lots of other good gifts). I had lots of other gifts too, which I loved. Margi, Colin and Grace left me a mug that said, "I would rather be down the meadows"; this is true!
Dehydrator
I have an amazing combined gift from a group of friends, which I am very grateful for. I will be getting a dehydrator, which is a low temperature cooker. This means that I will be able to cook food below 43 degrees, and retain all the natural enzymes in the foods. This will help me prevent my cancer from growing, and promote good health and natural resistance to illness. I will be making the order tomorrow, when I have time to do it properly. Thank you all - I really appreciate it.
Gert Lush Salad lunch
Dave, Martha, Katy, Mum and I go to North Star Delicatessen for lunch. Our laugh of the day was that we offered mum the option to share her meal with me, but that she chose to have her own. We both ate a meal for two each. I was starving of course, and I did not feel hungry at all this evening. I had a mediteranean salad with stuffed vine leaves, olives, sundried tomatoes, humous, pitta bread and salad. I also had a butternut squash salad on the side! Delicious. Martha was very disappointed that they did not have lasagne today, and settled for a baked potato. Katy wanted a baked potato.
My sleep
I then go to sleep. I have just woken, when Martha and Katy come home with Dave, to show me their shopping. They have new school bags, which I really liked; they included lunch boxes and fruit bags. Martha has some converse all star style boots.
Birthday cake
I made a wheat free birthday cake. Katy and Martha added candles, lit them, and came into the front room singing Happy Birthday. The cake tasted good too, so we can do this again. My next step is to see if I can make a wheat free and sugar free cake. I need to look up a recipe for this.
Athletics
Our afternoon and evening continues with the athletics. We can't believe how Ohurougu won the 400m. What a brilliant win - she had great mental strength to pull that off!
Louise comes round for the evening
We had a lovely evening with Louise. Great to see you. Louise is into CDs, so we played one of my CDs from Nigel and Sam.
Good night everyone. Thank you for all your texts and messages.
I am hoping to report that I sleep well tonight
love you
Sarah xxx
Sunday, 11 August 2013
A gentle day
Wet morning walk
I didn't have a good night's sleep last night. The surface of my skull is sore, where the x-rays enter. I wake up tired, and try to doze a little. I get up about 6.30 am and have my porridge and manuka honey, whilst watching the athletics.
My morning walk is my first on my own for a while. During the walk, it begins to rain, so I divert through the woods to get some shelter.
Dennon is three
My next door neighbour is having his third birthday party. Martha and Katy are invited as helpers, taking a group of three year olds to Head over Heels. They really enjoy it.
Izzy Jones comes to play with Martha
This is heaven for Martha. Martha and Izzy spend time upstairs playing together, and head out on their bikes to the park. Katy is very happy to watch Ponyo on TV, so I am able to sleep on the settee while she is absorbed in a film that she loves. I awake near the end of the film, feeling better. It is then only 15 minutes until Katy's friend arrives at 3 pm. Martha has been asked to sleep over at Izzy's, so we ask Rosy if she would like to sleep over tonight, and to Katy's delight, she can stay. Both girls are downstairs now, playing monopoly.
Visit from Occupational Therapist
I forgot to mention this, the OT comes to visit me once a week to check my progress. She came on Thursday. I was tested on a range of skills and got good marks. The tests were things like, acknowledge the sound of the letter A; can I draw a cube (a good question for a maths teacher!); can a draw a clock with numbers and mark 11.10 on it; can I remember a list (at the end of the test I got 3 out of 5 - this was my worst answer); and other similar questions that I can't recall now.
The OT told me that I had done very well. She was shocked that I am walking 3 miles a day, and said that she couldn't do this herself. She did tell me that she has another client who was fit before diagnosis, and that in week 4 of his treatment, he can still catch the bus to Christies for treatment. She is of the opinion that fitness is a big part of a good recovery process. I wish myself into the same space - I want to be fit and able through this treatment programme.
Back onto treatment programme tomorrow
I have given Martha and Katy the option of coming to the hospital tomorrow, to see the treatment room for the first time. I do not know if they will choose to come. Dave will look after them, while I am there if they choose not to, or he could look after one of them, if that is what happens. Let's wait and see...
Love you all
Sarah xxx
I didn't have a good night's sleep last night. The surface of my skull is sore, where the x-rays enter. I wake up tired, and try to doze a little. I get up about 6.30 am and have my porridge and manuka honey, whilst watching the athletics.
My morning walk is my first on my own for a while. During the walk, it begins to rain, so I divert through the woods to get some shelter.
Dennon is three
My next door neighbour is having his third birthday party. Martha and Katy are invited as helpers, taking a group of three year olds to Head over Heels. They really enjoy it.
Izzy Jones comes to play with Martha
This is heaven for Martha. Martha and Izzy spend time upstairs playing together, and head out on their bikes to the park. Katy is very happy to watch Ponyo on TV, so I am able to sleep on the settee while she is absorbed in a film that she loves. I awake near the end of the film, feeling better. It is then only 15 minutes until Katy's friend arrives at 3 pm. Martha has been asked to sleep over at Izzy's, so we ask Rosy if she would like to sleep over tonight, and to Katy's delight, she can stay. Both girls are downstairs now, playing monopoly.
Visit from Occupational Therapist
I forgot to mention this, the OT comes to visit me once a week to check my progress. She came on Thursday. I was tested on a range of skills and got good marks. The tests were things like, acknowledge the sound of the letter A; can I draw a cube (a good question for a maths teacher!); can a draw a clock with numbers and mark 11.10 on it; can I remember a list (at the end of the test I got 3 out of 5 - this was my worst answer); and other similar questions that I can't recall now.
The OT told me that I had done very well. She was shocked that I am walking 3 miles a day, and said that she couldn't do this herself. She did tell me that she has another client who was fit before diagnosis, and that in week 4 of his treatment, he can still catch the bus to Christies for treatment. She is of the opinion that fitness is a big part of a good recovery process. I wish myself into the same space - I want to be fit and able through this treatment programme.
Back onto treatment programme tomorrow
I have given Martha and Katy the option of coming to the hospital tomorrow, to see the treatment room for the first time. I do not know if they will choose to come. Dave will look after them, while I am there if they choose not to, or he could look after one of them, if that is what happens. Let's wait and see...
Love you all
Sarah xxx
Saturday, 10 August 2013
Lizzie - thanks for the vouchers
Lizzie, I don't have an email address for you - could you send it to me?
Thank you so much for the Croma vouchers. What an amazing surprise. Martha and Katy will love it, as will I. It is very generous of you. Loads of Love Sarah xxx
Thank you so much for the Croma vouchers. What an amazing surprise. Martha and Katy will love it, as will I. It is very generous of you. Loads of Love Sarah xxx
Martha and Katy home
I did have a bit of disaster, one day. I got stomach cramps and really needed the toilet! We took a short cut home, and knocked on Louise's door (Luca and Cara's mum), who kindly let me in. Hubbie Steve gave us a lift home too, which I really appreciated. Thanks for the help.
Martha and Katy come home
The same evening, Dave picks the girls and my Mum up from the airport. They arrive, tanned and in good spirits. Guess what the main topic of conversation is? You guessed it; it was Melody the wig. Here are some snaps.
Katy's sun burn
Visit from Margi, Grace and Nanna
On the 9th August, cousin Grace and family come over to wish Katy a happy birthday. Grace gave Katy a pen set, a writing book and a magazine. The magazine had a free beard, and more or less instantly, Katy had turned herself into a Viking. Very funny.
Everyone ate birthday cake, except me, because I am not allowed to eat before my radiotherapy appointments. I don't mind, I have got used to it. I had a piece when I got home, and it was delicious.
Trip to Christies
Margi gave me and Chris a lift to Christies. My appointment took place, exactly on time, and then Chris and I walked to find the bus stop to get the bus home. We chose the wrong road, so came home of the tram. This was remarkably quick and will be a good route to and from the hospital.
We got back before Margi, Joan and Grace had left. An excellent hospital trip.
My health
I continue to look well. There is a part of my skull that is starting to become very sore. I can only assume that this is where I will start losing my hair. It is not happening yet. I have to say that today (Saturday) I have been very relieved to not have to go to hospital. These weekends off are going to be very important to me.
I always need a sleep in the day. It is like an hour long power nap. I always feel much better afterwards.
Croma
Chris kindly took us all out for a meal at Croma. Martha asked very cleverly for an American, but with Chorizo instead of Pepperoni, and had a lovely meal. Mum invented her own pizza, and denied it! Katy stayed on the child's menu because she wasn't feeling very hungry. Chris and I finished with cheese and biscuits, which we both enjoyed. Thanks loads, Chris.
Pyjama day
Today we have had a pyjama day. I have not got changed after my morning walk. Katy and Martha have not got dressed. We have watched Les Miserables in my bed. Katy cannot stop singing the songs from the musical. Chris had left to go home, but Chris knows all the songs very well. We are now watching Harry Potter and the Goblet of Fire on TV.
Love you all loads
Sarah xxxx
All is good here
Good morning everyone. Just a quick note to say all is good here. Martha and Katy have come home and I have been totally focussed on them (and my radiotherapy). I will blog properly later today. No radiotherapy appointment today, or tomorrow! Hooray!
Love you loads
Sarah xxxx
Love you loads
Sarah xxxx
Wednesday, 7 August 2013
Brilliant appointment today - very swift!
My walk gets longer
Max and I went out for our morning walk this morning. My run plus a walk to the bridge that will take the tram over to the airport. My walk is getting longer every day. We also bumped into Duncan, chair of Governors at Chorlton CE, and had a good chat.
Making Scarves while we wait for dishwasher man
We then spend our time making scarves, and time passes. I phone a couple of times to find out where the dishwasher man is. I was getting nervous that he wouldn't make it. In the end, his time of 9 - noon turned into a 12.30 pm start. Delighted that the dishwasher is working well.
David Gillon drops by
Mr Gillon came over for a while, and it was great to see him and catch up on his news.
Sleep time
I have to have a lunchtime snooze. Also, my drugs regime dictates that I cannot eat after 1030 am. Around my sleep, I am taking anti-sickness drugs, and then after my sleep, I take chemotherapy tablet.
Hospital appointment
We check in, and I am called in very quickly. I am currently playing David Bowie, and I put this on the ipod in Unit 5 (my unit). I am then screwed down (which I am used to now). The next phase takes a lot longer that usual, in that the radiologists were studying my pictures. They came out and apologised for the delay, however, I was engrossed in the music, and didn't mind at all. After this, the usual x-ray process took place. Here is a snap of the mask imprint on my nose.
Appointment with consultant
On a Wednesday afternoon, every week, I have an appointment with my consultant, Dr McBain. She wasn't at Christies today, so I saw Charlotte, my specialist nurse.
The news is that my blood results are all ok.
I must continue taking one steroid tablet every morning until next week, and then they are going to reduce it gradually from 2mg to 1.5mg to 1mg over the next few weeks.
I asked about moisturizing my scalp and Charlotte said that I must wait until I have lost my hair, otherwise I would just have greasy hair. I am very happy to wait; I had been told that I should start now.
The other thing was that I told her that I cannot open my jaw properly, and that this was not improving. She noted this, and said that this was something I must discuss with Ms Karabatsou, my surgeon. Charlotte will arrange for a physio to give me some exercises to help me extend the range of my jaw. She was content that it was not getting any worse.
Charlotte also asked me about headaches, and I told her that I do get a headache; Max added that it gets worse as the day goes on. Charlotte asked me to check how much water I was drinking in case this was dehydration, and advised that if the headache is bad in the morning, I must ring her and tell her about it, because this would be an indication of swelling. This is not happening at all, so I am not worried about this.
From here, I was free to go home.
Love you all loads
Sarah xxx
Max and I went out for our morning walk this morning. My run plus a walk to the bridge that will take the tram over to the airport. My walk is getting longer every day. We also bumped into Duncan, chair of Governors at Chorlton CE, and had a good chat.
Making Scarves while we wait for dishwasher man
We then spend our time making scarves, and time passes. I phone a couple of times to find out where the dishwasher man is. I was getting nervous that he wouldn't make it. In the end, his time of 9 - noon turned into a 12.30 pm start. Delighted that the dishwasher is working well.
David Gillon drops by
Mr Gillon came over for a while, and it was great to see him and catch up on his news.
Sleep time
I have to have a lunchtime snooze. Also, my drugs regime dictates that I cannot eat after 1030 am. Around my sleep, I am taking anti-sickness drugs, and then after my sleep, I take chemotherapy tablet.
Hospital appointment
We check in, and I am called in very quickly. I am currently playing David Bowie, and I put this on the ipod in Unit 5 (my unit). I am then screwed down (which I am used to now). The next phase takes a lot longer that usual, in that the radiologists were studying my pictures. They came out and apologised for the delay, however, I was engrossed in the music, and didn't mind at all. After this, the usual x-ray process took place. Here is a snap of the mask imprint on my nose.
On a Wednesday afternoon, every week, I have an appointment with my consultant, Dr McBain. She wasn't at Christies today, so I saw Charlotte, my specialist nurse.
The news is that my blood results are all ok.
I must continue taking one steroid tablet every morning until next week, and then they are going to reduce it gradually from 2mg to 1.5mg to 1mg over the next few weeks.
I asked about moisturizing my scalp and Charlotte said that I must wait until I have lost my hair, otherwise I would just have greasy hair. I am very happy to wait; I had been told that I should start now.
The other thing was that I told her that I cannot open my jaw properly, and that this was not improving. She noted this, and said that this was something I must discuss with Ms Karabatsou, my surgeon. Charlotte will arrange for a physio to give me some exercises to help me extend the range of my jaw. She was content that it was not getting any worse.
Charlotte also asked me about headaches, and I told her that I do get a headache; Max added that it gets worse as the day goes on. Charlotte asked me to check how much water I was drinking in case this was dehydration, and advised that if the headache is bad in the morning, I must ring her and tell her about it, because this would be an indication of swelling. This is not happening at all, so I am not worried about this.
From here, I was free to go home.
Love you all loads
Sarah xxx
Head scarves
Max and I spent our morning making headscarves. We cut out squares, and then pinned, ironed and hand sewed the edges. Max learned to make a rose, so this first headscarf has a rose as part of it.
This headscarf is a gift from Gee. It is the perfect shape for lots of styles.
This looks a little small right now, but tied wider, it will work well as a versatile scarf.
Hope you like all the options. We had a lot of fun doing it.
Ooh look who arrived this evening! Here is Chris sporting Melody. Another rocker, I think. Max "handed over" to Chris, who will be here for Martha and Katy's homecoming, which I can't wait for. One sleep to go ...
Hope you like all the options. We had a lot of fun doing it.
Dishwasher installed - hooray!
Max has headed home now. We have had a brilliant week together. She has looked after me, and been a fantastic friend. Thank you, Max. Get your route around Blaze Castle organised and keep walking!
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