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
Saturday, 10 August 2013
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!
Tuesday, 6 August 2013
Beechwood cancer care centre
Beechwood Cancer Care Centre
Max and I attended Beechwood cancer care centre, today. The appointment was preparation for counselling for Martha and Katy. The therapist was finding out what they are like, and how they have reacted so far to my diagnosis, operation and treatment programme. Both Max and I liked the therapist; we both think that the girls will respond positively to her. We spent an hour sharing Martha and Katy's very different reactions to my news.
I was also given a referral form to access support for me. I will be able to access counselling support, and it also seems that there are other support options available, like reflexology. I am interested in attending the counselling. Throughout the process my treatment has been professional and efficient. I have a range of people who are supporting me, and I am amazed at the level of support. However, all of this support is treatment based. It will be good for me to have some support and time to consider my emotional response to diagnosis and treatment. My first appointment is at the end of August.
Scarf session
We attended the scarf session. Hmmmm... it was not what we were expecting. It was an opportunity to try on hats and pre-tied scarves, and then to buy them. Not really my thing.
We dropped into fabric shop on the way home and bought two pieces of fabric to make square scarf - we are going to try to follow a you tube guide to tying scarves.
The rest of my day
We walked my run route and a little bit more.
I slept.
Watched a film.
Had a bath.
Pottered about (I am still listening to Les Miserables)
PS. Steroid side effect - mucking up your menstrual cycle - this is true.
Waiting for Martha and Katy to come home
They come home on Thursday evening. I sooooo want to see them. It seems like months that I haven't been with them.
Tomorrow evening, Max leaves (she will pick up Peter as he comes back from Herm, in Bristol); Chris Biddle arrives. The wig is waiting!!
Max and I attended Beechwood cancer care centre, today. The appointment was preparation for counselling for Martha and Katy. The therapist was finding out what they are like, and how they have reacted so far to my diagnosis, operation and treatment programme. Both Max and I liked the therapist; we both think that the girls will respond positively to her. We spent an hour sharing Martha and Katy's very different reactions to my news.
I was also given a referral form to access support for me. I will be able to access counselling support, and it also seems that there are other support options available, like reflexology. I am interested in attending the counselling. Throughout the process my treatment has been professional and efficient. I have a range of people who are supporting me, and I am amazed at the level of support. However, all of this support is treatment based. It will be good for me to have some support and time to consider my emotional response to diagnosis and treatment. My first appointment is at the end of August.
Scarf session
We attended the scarf session. Hmmmm... it was not what we were expecting. It was an opportunity to try on hats and pre-tied scarves, and then to buy them. Not really my thing.
We dropped into fabric shop on the way home and bought two pieces of fabric to make square scarf - we are going to try to follow a you tube guide to tying scarves.
The rest of my day
We walked my run route and a little bit more.
I slept.
Watched a film.
Had a bath.
Pottered about (I am still listening to Les Miserables)
PS. Steroid side effect - mucking up your menstrual cycle - this is true.
Waiting for Martha and Katy to come home
They come home on Thursday evening. I sooooo want to see them. It seems like months that I haven't been with them.
Tomorrow evening, Max leaves (she will pick up Peter as he comes back from Herm, in Bristol); Chris Biddle arrives. The wig is waiting!!
Monday, 5 August 2013
Well done England - we retain the ashes!
My sporting history since the operation is:
Andy Murray wins Wimbledon
Chris Froome wins La Tour de France
England retain the ashes - cricket
What's next? The world athletic championships start 10 August. I will be watching!!
Andy Murray wins Wimbledon
Chris Froome wins La Tour de France
England retain the ashes - cricket
What's next? The world athletic championships start 10 August. I will be watching!!
A**ehole - a steroid moment!
First wet walk
Max and I start the morning with a walk. This is my first wet walk - it is raining, and we go out in gortex waterproofs. The good thing is that I have no doubt that the only thing to do, is to go out for a walk. I want this routine to fall back on if I am feeling poorly.
We walk down Edge Lane today, and up through Longford Park. We drop into doctors for a prescription, chemist, and the parcels office. We return home, exercised and satisfied with doing jobs along the way.
Drugs timetable
I am then tightly tied into my drugs timetable. I cannot eat after 09.50, so set about making a good meal to tide me through. I make a delicious fish pie, using the Pembrokeshire potatoes that my Dad sent me in an electric pump box (I thought it was an electric pump). I am full and very happy.
I then need a sleep and go to bed for an hour (after antibotics). I wake to take the anti-sickness tablet. Chemotherapy tablet goes in my bag for correct time.
The Bank
On the way to the hospital, we drop into a bank, so that I can pay in a refund for a jacket of Martha's. After this, Max is driving back towards the hospital on roads that she doesn't know. I say straight on, and Max starts to pull into the left hand lane, however this takes you left, so I advise her to stay in middle lane. A van then passes my open window and the driver shouts out "you are clueless". Max does not hear this at all. All Max can see and hear is her usually polite and restrained sister, shouting "A**ehole", with her head hanging out of the window. I have never done anything like this, ever. It must be the steroids. So, Max and I are laughing, and screaming at what I have just done. Very funny indeed!!
Wig
I then decide to accept the offer of a free wig.
My appointment
This is reasonably on time. I have taken an Abba CD and found it reasonably comfortable today. The CD helps because I can judge the time by the number of tracks. I emerge from the session singing "Waterloo". Max and I sing this all the way to the car.
Max and I start the morning with a walk. This is my first wet walk - it is raining, and we go out in gortex waterproofs. The good thing is that I have no doubt that the only thing to do, is to go out for a walk. I want this routine to fall back on if I am feeling poorly.
We walk down Edge Lane today, and up through Longford Park. We drop into doctors for a prescription, chemist, and the parcels office. We return home, exercised and satisfied with doing jobs along the way.
Drugs timetable
I am then tightly tied into my drugs timetable. I cannot eat after 09.50, so set about making a good meal to tide me through. I make a delicious fish pie, using the Pembrokeshire potatoes that my Dad sent me in an electric pump box (I thought it was an electric pump). I am full and very happy.
I then need a sleep and go to bed for an hour (after antibotics). I wake to take the anti-sickness tablet. Chemotherapy tablet goes in my bag for correct time.
The Bank
On the way to the hospital, we drop into a bank, so that I can pay in a refund for a jacket of Martha's. After this, Max is driving back towards the hospital on roads that she doesn't know. I say straight on, and Max starts to pull into the left hand lane, however this takes you left, so I advise her to stay in middle lane. A van then passes my open window and the driver shouts out "you are clueless". Max does not hear this at all. All Max can see and hear is her usually polite and restrained sister, shouting "A**ehole", with her head hanging out of the window. I have never done anything like this, ever. It must be the steroids. So, Max and I are laughing, and screaming at what I have just done. Very funny indeed!!
Wig
I then decide to accept the offer of a free wig.
My appointment
This is reasonably on time. I have taken an Abba CD and found it reasonably comfortable today. The CD helps because I can judge the time by the number of tracks. I emerge from the session singing "Waterloo". Max and I sing this all the way to the car.
My new wig!
I took Max to a scarf tying session, but unfortunately it wasn't on. Maybe tomorrow. While there, we found the wig department. I don't want to wear a wig - I think it will be uncomfortable and hot, however, we decided that because it was FREE then maybe I should get one. I can wear it for fun at any time!! Here are my trials. Which one would you choose?
Longer and dark.
I chose the longer and dark. She is called "Melody". Maybe I will meet you when wearing my Melody wig ...
Sunday, 4 August 2013
Made it to church (partly)
Walked my run route and a little more
Up and out for walk this morning, and Lisa Watson joined us too. I walked Beech Road and back, and then my old run route. I am very happy with how I am getting on.
Katy is NINE
Katy has had her ninth birthday on Herm. I have spoken with her twice, and she has been bubbly and full of beans. She opened her present from me, while we were on the phone and said it was "EPIC". Max could hear her across the room. Her gift was a baseball bat and ball. Later in the day she told me that she hit it hard enough that it went behind Jamie's tent. I guessed she meant it went along way, and said so, and she confirmed this very proudly. She had pancakes for breakfast, and a BBQ lunch. She liked her birthday cake, too. I am very proud of her. Her conversation is good on the phone. I missed being with her. I want Martha and Katy to come home, now.
I went to church
I have not made it to church for many months. I decided to go today, however, I have learned about my limitations. The vicar was there, and gave me a big hug, which was very warming. I made it there very well, but could not stand during the service, and found myself wondering about how long I could stay. I ended up leaving immediately after communion, and going straight home to bed. The topic of the service was about how to handle death. Every reading was about how a different person dealt with death in a different way. The sermon analysed their approaches.
Continuing to potter
I have cleared out another drawer of my filing cabinet. Just one left to do now. It works very well. I sit quietly and go through files, and throw into a big pile. Max comes and takes waste paper to paper bin.
TV
Other than that, I have watch the tele. I watched the Percy half blood son of Greek God film, which I enjoyed. Martha and Katy will love it - I have recorded it. I watched Frasier too - which was fun.
Helen makes it to the top of Scafell Pike
Well done, Helen. We are all really proud of you.
Good night all
love you loads
Sarah xxx
Up and out for walk this morning, and Lisa Watson joined us too. I walked Beech Road and back, and then my old run route. I am very happy with how I am getting on.
Katy is NINE
Katy has had her ninth birthday on Herm. I have spoken with her twice, and she has been bubbly and full of beans. She opened her present from me, while we were on the phone and said it was "EPIC". Max could hear her across the room. Her gift was a baseball bat and ball. Later in the day she told me that she hit it hard enough that it went behind Jamie's tent. I guessed she meant it went along way, and said so, and she confirmed this very proudly. She had pancakes for breakfast, and a BBQ lunch. She liked her birthday cake, too. I am very proud of her. Her conversation is good on the phone. I missed being with her. I want Martha and Katy to come home, now.
I went to church
I have not made it to church for many months. I decided to go today, however, I have learned about my limitations. The vicar was there, and gave me a big hug, which was very warming. I made it there very well, but could not stand during the service, and found myself wondering about how long I could stay. I ended up leaving immediately after communion, and going straight home to bed. The topic of the service was about how to handle death. Every reading was about how a different person dealt with death in a different way. The sermon analysed their approaches.
Continuing to potter
I have cleared out another drawer of my filing cabinet. Just one left to do now. It works very well. I sit quietly and go through files, and throw into a big pile. Max comes and takes waste paper to paper bin.
TV
Other than that, I have watch the tele. I watched the Percy half blood son of Greek God film, which I enjoyed. Martha and Katy will love it - I have recorded it. I watched Frasier too - which was fun.
Helen makes it to the top of Scafell Pike
Well done, Helen. We are all really proud of you.
Good night all
love you loads
Sarah xxx
Saturday, 3 August 2013
Now walking my run
I can walk my run route
With Max with me, I decided to try my run route, but walking. We had a really nice walk in beautiful sunshine, and I am proud that I have built up to be able to walk my run route. I am walking 3 miles each morning, and building up a muscle base.
New outfit
We then headed off to Sainsbury's - I am checking out the supermarkets for their organic food range. The other reason for going there was to get Katy some school shorts. They did not have any of Katy's favourite shorts in stock, but Max and I found a sale rail. I went home with a pair of floral trousers, and a dark blue t-shirt, and a scarf. I spent a total of £19. Max got a fab dress.
Sainsbury's sell a good range of organic food
On organic food, I had to conclude that Sainsbury's offers a good range of organic products, and they offer online shopping. Right now, it looks like I am going to use this shop as my main provider, and I will top up from Unicorn. This is my way of managing my money. I have looked at Asda (very poor range), and Morrisons (basic range, but handy as local shop).
We had breakfast in the café and read the papers. It was very relaxing.
When we get home, I take my anti-sickness drugs and have a sleep. Chemotherapy drugs when I am awake.
Sorting out my bedroom
I spent a while clearing two drawers of my filing cabinet. I have two more to do, but enjoyed pottering my way through different files and throwing lots of stuff away.
Katy has her birthday barbecue
In the evening, I call Katy to wish her a happy birthday BBQ. This is the first time I have spoken to her since I left Herm. She tells me that she loves me. The Katy tells me about how she has caught large crabs. She is happy and enjoying her BBQ on the beach. Martha tells me about the crabs too. I am very happy that they are enjoying themselves, and don’t appear to be missing me at all. Katy will be nine years old tomorrow.
The crazy fly
Max and I have a quarrel with a large fly that is buzzing crazily around her bedroom. It leaves her room, and guess what, it is buzzing around my room. We open the windows wide and turn off the lights to encourage it to fly out of the room. Max guards the door. I pick up a folder and smack it to whack it outside and throw the contents of my folder across the room. The fly has gone, hopefully not my documentation! Max and I are laughing about it, and considering checking that I have not thrown any papers out of the window.
John Lewis Refund
JL refunded all delivery charges and apologised. I now wait for local "expert" to have a go...
With Max with me, I decided to try my run route, but walking. We had a really nice walk in beautiful sunshine, and I am proud that I have built up to be able to walk my run route. I am walking 3 miles each morning, and building up a muscle base.
New outfit
We then headed off to Sainsbury's - I am checking out the supermarkets for their organic food range. The other reason for going there was to get Katy some school shorts. They did not have any of Katy's favourite shorts in stock, but Max and I found a sale rail. I went home with a pair of floral trousers, and a dark blue t-shirt, and a scarf. I spent a total of £19. Max got a fab dress.
Sainsbury's sell a good range of organic food
On organic food, I had to conclude that Sainsbury's offers a good range of organic products, and they offer online shopping. Right now, it looks like I am going to use this shop as my main provider, and I will top up from Unicorn. This is my way of managing my money. I have looked at Asda (very poor range), and Morrisons (basic range, but handy as local shop).
We had breakfast in the café and read the papers. It was very relaxing.
When we get home, I take my anti-sickness drugs and have a sleep. Chemotherapy drugs when I am awake.
Sorting out my bedroom
I spent a while clearing two drawers of my filing cabinet. I have two more to do, but enjoyed pottering my way through different files and throwing lots of stuff away.
Katy has her birthday barbecue
In the evening, I call Katy to wish her a happy birthday BBQ. This is the first time I have spoken to her since I left Herm. She tells me that she loves me. The Katy tells me about how she has caught large crabs. She is happy and enjoying her BBQ on the beach. Martha tells me about the crabs too. I am very happy that they are enjoying themselves, and don’t appear to be missing me at all. Katy will be nine years old tomorrow.
The crazy fly
Max and I have a quarrel with a large fly that is buzzing crazily around her bedroom. It leaves her room, and guess what, it is buzzing around my room. We open the windows wide and turn off the lights to encourage it to fly out of the room. Max guards the door. I pick up a folder and smack it to whack it outside and throw the contents of my folder across the room. The fly has gone, hopefully not my documentation! Max and I are laughing about it, and considering checking that I have not thrown any papers out of the window.
John Lewis Refund
JL refunded all delivery charges and apologised. I now wait for local "expert" to have a go...
Friday, 2 August 2013
Radiotherapy 2/30
Max was with me. We were met by Clean Lynn my cleaning therapist, who double checked that my preference was to go in alone today. I went in alone.
Before the appointment, Max and I made sure I followed all the guidance on taking of drugs. I could not eat after 10am so had a veggie haggis omelette and salad at 9.30 am (I have food in the fridge that is going out of date, so I am eating in date order. Haggis today!). I took my anti-sickness pill at 1pm, chemotherapy pill at 2pm and radiotherapy appointment at 3pm.
I didn't go in till about 3.30 pm. On Monday, I will ask how many people are in front of me, so that I can make a judgement about where to wait. It would have been good to wait in the garden today, for example.
Max tells me that I was in the appointment for 15 mins. It feels like 15 hours! It was lots quicker today, than yesterday because the team had made and checked all the measurements and were ready to go. I have the option of taking music with me, but I forgot to take my ipod. I will remember it on Monday.
Here is the imprint of my mask on my forehead. Yesterday, this imprint was across my forehead and down my nose. Beautiful!!
Before the appointment, Max and I made sure I followed all the guidance on taking of drugs. I could not eat after 10am so had a veggie haggis omelette and salad at 9.30 am (I have food in the fridge that is going out of date, so I am eating in date order. Haggis today!). I took my anti-sickness pill at 1pm, chemotherapy pill at 2pm and radiotherapy appointment at 3pm.
I didn't go in till about 3.30 pm. On Monday, I will ask how many people are in front of me, so that I can make a judgement about where to wait. It would have been good to wait in the garden today, for example.
Max tells me that I was in the appointment for 15 mins. It feels like 15 hours! It was lots quicker today, than yesterday because the team had made and checked all the measurements and were ready to go. I have the option of taking music with me, but I forgot to take my ipod. I will remember it on Monday.
Dishwasher not fitted ...
The fitters couldn't get the old dishwasher out, so I now have new dishwasher in the kitchen, and instructions to get a kitchen fitter to come and dismantle the unit so that the dishwasher can be removed. Next attempt will be the 5th attempt!
First - Bev gave me wrong date (our fault)
Second - Fitters come with dishwasher, but are not trained to remove integrated dishwasher. Web site assumed that because we ordered non-integrated dishwasher, that the current one was non-integrated.
Third - Trained fitters come, but without dishwasher.
Fourth - Trained fitters come with dishwasher and can't get old one out.
Fifth - let's see ...
First - Bev gave me wrong date (our fault)
Second - Fitters come with dishwasher, but are not trained to remove integrated dishwasher. Web site assumed that because we ordered non-integrated dishwasher, that the current one was non-integrated.
Third - Trained fitters come, but without dishwasher.
Fourth - Trained fitters come with dishwasher and can't get old one out.
Fifth - let's see ...
Thursday, 1 August 2013
My drugs regime linked to radiotherapy programme.
“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
|
|
Fri 2/8/13
|
1500
|
1000
|
1300
|
1400
|
|
1500 - 1600
|
|
Mon 5/8/13
|
1450
|
0950
|
1250
|
1350
|
Take 2 x 480mg
|
1450 - 1550
|
|
Tues 6/8/13
|
1030
|
Do not eat
|
0830
|
0900 - 0930
|
|
1030 - 1130
|
|
Wed 7/8/13
|
1530
|
1050
|
1350
|
1450
|
Take 2 x 480 mg
|
1550 - 1650
|
|
Thurs 8/8/13
|
0945
|
Do not eat
|
0745
|
0815-0845
|
|
0945-1045
|
|
Fri 9/8/13
|
1345
|
Do not eat
|
1145
|
1215 - 1245
|
Take 2 x 480 mg
|
1345 - 1445
|
|
Weekly
programme
|
|
|
|
|
|
|
|
Mon/Tues/Thurs/Fri
|
1125
|
Do not eat
|
0925
|
0955-1025
|
|
1125 - 1225
|
|
Wed
|
1430
|
1330
|
1230
|
1330
|
|
1430 - 1530
|
|
Wed
|
Meet consultant
|
|
|
|
|
|
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 - Ondansetron Take one every day 30 mins
before chemotherapy tablet
Anti-sickness - Metoclopramide Take one tablet up to three times
a day.
Steroid - Dexamethasone 1 x 2mg every morning with food.(ask
about how to take this when on morning appointment)
Stomach protector Omeprazole Take every morning before
breakfast
Start of radiotherapy programme. Session 1 of 30 ...
Radiotherapy
programme starts
I shall begin with a little aside. When I gave birth to Katy I had a cleaner,
who helped me at home once a week.
Whilst the standards of cleaning were excellent, I ended up
letting her go. She was training to be a
psychotherapist…
I arrive promptly with Louise, who has kindly given me a
lift. We are guided immediately to Ian
at the radiotherapy desk, who then works through my dates and times for the
coming week, and puts me down for a regular slot from the 9th August
onwards. I have a mixture of different times
to attend over this week, and then from the 9th I have the same time
appointment each day.
We sit down to wait for the appointment, and very quickly, I
am taken for a preparation interview. In
this meeting we establish what is going to happen, the potential side effects,
and that I have not got my chemotherapy drugs yet. My attached nurse has the day off, and has
left me a note with some written guidance on preparing correctly for each
appointment.
Come back in an hour
I am asked to wait for the appointment, however, the nurse
returns to tell me that I have to take
the chemotherapy drugs one hour before the radiotherapy. A student nurse delivers the drugs, which I
take, and then wander off to read the paper in the garden.
Cancer care centre
However, on the way to the garden, I find a cancer help
centre, and go in to ask about using supplements during treatment. I am guided to another department, where I
have a long conversation with Anita, who tells me that they cannot guide me on
diet. She tells me that they only help
people who are inmates, and people who have head and neck radiotherapy. Her manner indicates that she does not think
that this is me, and looks very surprised when I say, that is me. I just can’t help looking well!
So, I find myself talking to a woman that I vaguely
recognise, who asks me if she knows me already.
I ask my usual question “do you play hockey” to which she answers “no”. And she quickly remembers that she was once
my cleaner. Yes, she was Lynn, my old
cleaner. Lynn is counselling me, in preparation for
my first radiotherapy appointment, and how I want to laugh out loud and tell
how it was …
When I return for my appointment, I am accompanied by Lynn. Lynn has given me a stress star to squeeze and
breathe to. It has five points on it
that I can use to highlight people I love. “It was made with love”. She talks about fundraising, and I tell her
that I have been fundraising for Christies for some time. Next event – the 2015 London Marathon. I have
been told that my mask is a “shield”, and that it is there to protect me and
help staff be precise in their work with the x-ray lasers. I am taught some relaxation techniques like
lifting my heels and then letting them relax, whilst breathing out slowly. “Squeeze
your knees together; and now relax.
Breathe out slowly”.
Through my appointment, I have Lynn holding my hand and
guiding me through each stage of it. The
help I found most useful was that she did tell me what they were doing and
why. I am fixed to a bench with my eyes
shut, so to be given this information, really helped me to pace myself; “you are over half way” was a joyous piece of
information. Lynn of course disappears
for the actual x-ray part of the process, and then returns as the staff make
adjustments to my position, and set up machine for next x-ray.
Radiotherapy session
1
So, what happens?
Bear in mind that I have my eyes closed.
They have a series of x-rays to perform.
The bench that I am lying on moves me into the correct position. This feels like a slide, or for some x-rays,
this was a juddering sideways (it felt like it was sideways, but I don’t
know). The staff are putting something
on my “shield” (sorry the name has escaped me, maybe a diode??) – they do this
for every x-ray that they perform. At
one point something is touching my neck and I murmer for them to move it (I
cannot open my mouth). This is done
happily.
For all the x-rays, the staff are very careful to check
every measurement over and over again, and they do not proceed until they are
confident that they have the correct measurements and direction of x-ray beam.
When the x-ray is taken, I see light blue flickering light
through my eye lids. I think I am being
lit up like someone in a giant magic experiment. Or being recreated, like Hugh Jackman in the film, "The Prestige" (This is a film that I would recommend - it is the story of two competing magicians. Michael Caine also plays a key role in the film).
I am concentrating on my breathing. Deep breath in, and then slow exhale. This is working for me and feel relaxed. Lynn mentions “Hern” (not Herm) and I am
annoyed by this.
I still have Lynn talking to me, outside the radiotherapy
room. I tell her that I think I can do
it well tomorrow on my own. She says
that she “knows I can”.
In the toilet after the event, I can see in the mirror that
my “shield” is imprinted on my face. I
have a grid across my nose and my forehead.
Wednesday, 31 July 2013
Planning for Martha and Katy ...
Martha and Katy
I have to organise Martha and Katy around my radiotherapy times. My day will be, that someone will come to collect the girls, then I will go to Christies and return, and girls will be returned to me. I have a list of Chorlton mums and dads available times, so will be calling to ask for help within the next couple of days. This is where my summer gets tricky... Martha and Katy come home from their holiday on 8th August.
Thank you for giving dates to Sarah McCall. Anyone else who could help, could you send and dates through to me sarahc1208@btinternet.com or to mobile phone. Thank you so much.
Good night everyone
love
Sarah xxx
I have to organise Martha and Katy around my radiotherapy times. My day will be, that someone will come to collect the girls, then I will go to Christies and return, and girls will be returned to me. I have a list of Chorlton mums and dads available times, so will be calling to ask for help within the next couple of days. This is where my summer gets tricky... Martha and Katy come home from their holiday on 8th August.
Thank you for giving dates to Sarah McCall. Anyone else who could help, could you send and dates through to me sarahc1208@btinternet.com or to mobile phone. Thank you so much.
Good night everyone
love
Sarah xxx
A good day at home
My walk is getting longer
I am up with the dawn and the beautiful birdsong, and struggle to get more sleep. I go for my walk before 8am and make it to Jackson's Boat and back very comfortably. I am not far off being able to walk my old "short run". I feel very relaxed when I am walking; I am gently out of breath, able to think and feeling good about myself. Those of you from Chorlton will be familiar with these views, but for non-chorltonites, here is a little of what I see en route. It is a beautiful part of the City.
This is the bridge across the River Mersey to the Jackson's Boat pub.
Here, I am nearly home. The bridge at the end goes under the road. This is the cut, that flows through to the River Mersey.
Back home, I finish breakfast and then head back to bed for a sleep. I am woken by my Mum calling, which is an amazing habit that she has - she somehow knows the worst time to call. I say I will call her back. Margi calls and we have good chat. They are going to come over to celebrate Katy's birthday on 9th August.
I am already stuck and cannot make clear arrangements - I know I have an appointment at Christie, but I do not know the time, so our plans are that they will come over, and I may or may not be here. During my first week at Christies, I will be given a regular time for my radiotherapy - I just don't have it yet.
Occupational Therapy and Physiotherapy
I am visited by appointment, by two professionals. I am feeling very well and feel slightly embarrassed that I have no clear symptoms to share with them. I can complete all the tests comfortably, my right side is working normally, I am walking regularly. The OT agrees to order a grab rail for my bathroom; this is a physical piece of help that I do need. It is easy to get disorientated in the shower and lose your balance. They also tell me of other help that is available, should I need it as I go through the treatment programme. I could have a seat to sit in the shower, or have the toilet height raised, for example. They give me their phone numbers so that I can call them, if I need any further support.
Anna Dawson
Anna was one of my colleagues at Chorlton High School. I discovered from Gill and Vanessa that she is pregnant - due 17th September. She is so looking forward to being a Mum and I know she will be brilliant with her baby. It was really good to see her.
Mobile Massage
Late afternoon, I have the luxury of a massage and eyebrow shape. The lady who came was really friendly, and very professional. I really enjoyed the experience, and amazingly have more money on the voucher to have a repeat session in a few weeks. I am going to try my first ever facial, I think. Any suggestions welcomed! Thanks so much for this, Sally.
Dave drops in, which was a great help - I am doing very well, but still need help moving things up and down the stairs. We have a good chat about lots of things.
Radiotherapy and Chemotherapy starts tomorrow
I will be going to Christies every week day for the next 6 weeks. Tomorrow my appointment is at 11.10. I will also have a meeting with my radiotherapist who will give me chemotherapy tablets and guidance on how to take it. During my first week, I will negotiate a regular time.
Martha and Katy
I have to organise Martha and Katy around my radiotherapy times. My day will be, that someone will come to collect the girls, then I will go to Christies and return, and girls will be returned to me. I have a list of Chorlton mums and dads available times, so will be calling to ask for help within the next couple of days. This is where my summer gets tricky...
If you have not given dates that you could help to Sarah McCall, could you send them through to me sarahc1208@btinternet.com or to mobile phone.
Good night everyone
love
Sarah xxx
I am up with the dawn and the beautiful birdsong, and struggle to get more sleep. I go for my walk before 8am and make it to Jackson's Boat and back very comfortably. I am not far off being able to walk my old "short run". I feel very relaxed when I am walking; I am gently out of breath, able to think and feeling good about myself. Those of you from Chorlton will be familiar with these views, but for non-chorltonites, here is a little of what I see en route. It is a beautiful part of the City.
Back home, I finish breakfast and then head back to bed for a sleep. I am woken by my Mum calling, which is an amazing habit that she has - she somehow knows the worst time to call. I say I will call her back. Margi calls and we have good chat. They are going to come over to celebrate Katy's birthday on 9th August.
I am already stuck and cannot make clear arrangements - I know I have an appointment at Christie, but I do not know the time, so our plans are that they will come over, and I may or may not be here. During my first week at Christies, I will be given a regular time for my radiotherapy - I just don't have it yet.
Occupational Therapy and Physiotherapy
I am visited by appointment, by two professionals. I am feeling very well and feel slightly embarrassed that I have no clear symptoms to share with them. I can complete all the tests comfortably, my right side is working normally, I am walking regularly. The OT agrees to order a grab rail for my bathroom; this is a physical piece of help that I do need. It is easy to get disorientated in the shower and lose your balance. They also tell me of other help that is available, should I need it as I go through the treatment programme. I could have a seat to sit in the shower, or have the toilet height raised, for example. They give me their phone numbers so that I can call them, if I need any further support.
Anna Dawson
Anna was one of my colleagues at Chorlton High School. I discovered from Gill and Vanessa that she is pregnant - due 17th September. She is so looking forward to being a Mum and I know she will be brilliant with her baby. It was really good to see her.
Mobile Massage
Late afternoon, I have the luxury of a massage and eyebrow shape. The lady who came was really friendly, and very professional. I really enjoyed the experience, and amazingly have more money on the voucher to have a repeat session in a few weeks. I am going to try my first ever facial, I think. Any suggestions welcomed! Thanks so much for this, Sally.
Dave drops in, which was a great help - I am doing very well, but still need help moving things up and down the stairs. We have a good chat about lots of things.
Radiotherapy and Chemotherapy starts tomorrow
I will be going to Christies every week day for the next 6 weeks. Tomorrow my appointment is at 11.10. I will also have a meeting with my radiotherapist who will give me chemotherapy tablets and guidance on how to take it. During my first week, I will negotiate a regular time.
Martha and Katy
I have to organise Martha and Katy around my radiotherapy times. My day will be, that someone will come to collect the girls, then I will go to Christies and return, and girls will be returned to me. I have a list of Chorlton mums and dads available times, so will be calling to ask for help within the next couple of days. This is where my summer gets tricky...
If you have not given dates that you could help to Sarah McCall, could you send them through to me sarahc1208@btinternet.com or to mobile phone.
Good night everyone
love
Sarah xxx
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