Martha has done a wonderful performance in the Bold Buccaneers unfortunately I wasn't there to see it. Daddy took her with Katy. Katy filmed it on her ipod touch, so I could watch when they got home. I am amazed by how Martha remembers all her lines and stage commands. Martha is going to be become a brilliant actress. I am so proud of her. I LOVE HER!
http://www.youtube.com/watch?v=L1vxQhQk_cU&feature=c4-overview&list=UUsLF78Ly8cd3Fx--He9TDyg
Saturday, 6 July 2013
Gift from Max
I know it is a big sister and a younger sister supporting each other. When Max gave it to me, we had a big hug and a weep. Thank you - it is beautiful. I will put it in front room tomorrow.:)
I think it is a chrysalis, (from Katy).
Visit by Max and Jess
My sister Max and her daughter Jessica came to visit today. They drove up from Bristol and arrived around 11 am. Martha and Katy were with Dave at swimming at the time. We have had a lovely day together.
Jess went to meet her friend at piccadilly station - they used to live together. I gave Jess directions to Affleck's palace, but they chose to sit and chat together in Subway, I think. Around this, she had a good time with Martha and Katy, who were of course delighted to see her.
Max helped me in so many ways. Max, you are brill!!! Max helped my mum in so many ways. Come back soon ...
My mum is now hopefully resting, because we have had two bad nights. Let's hope that I can settle well tonight.
So far, so good :) :) :)
Jess went to meet her friend at piccadilly station - they used to live together. I gave Jess directions to Affleck's palace, but they chose to sit and chat together in Subway, I think. Around this, she had a good time with Martha and Katy, who were of course delighted to see her.
Max helped me in so many ways. Max, you are brill!!! Max helped my mum in so many ways. Come back soon ...
My mum is now hopefully resting, because we have had two bad nights. Let's hope that I can settle well tonight.
So far, so good :) :) :)
My nails - Martha and Katy in action
Along the way, Katy organised my drawer of nail polish, so that it is now in colour and sparkle order. They go from light to dark, and sparkly to coloured.
Thank you both for a great job. I love my new nails. :)
I love you.
My aubergine lunch
I have been spelling die incorrectly
My sister Max tells me that I should spell Die with a y. I had dye in my arm. I am hooting with laughter because I have been spelling dye using a word that means death.
I am not going to die :)
I am not going to die :)
Visit by doctor brings good news
Good afternoon everyone.
I have had to call out the doctor today, after two difficult nights at home. My mum called the hospital, who told her to call 111. I answered all the 111 questions that simply check that I am not dying and not suicidal, and the call is concluded with her recommending that I go to GOTODOC at the Manchester Royal Infirmary. I refused to attend. She asked me if I could walk, and I said as far as the toilet. It was agreed that a doctor would be asked to visit, but that I may have to wait. I said this was fine. Blimey, I have had brain surgery, and had to beg for a doctor to visit.
The outcome was that the doctor arrived within the hour, which was brilliant. He checked my pulse, blood pressure, temperature (37.2), movement, breathing, and asked lots of questions about what had happened in the night. My mum had written down her version of what was happening and shared with him that she did not think I was hallucinating, but that I was giggling uncontrollably and completely out of control. She wrote out some of things I was saying, or laughing about.
The doctor has helped us. One of the outcomes of the steroids is ecstasy. Plus my brain has changed with the extraction of the tumour. There are going to be more times when I become ecstatic. Before the ecstacy I am experiencing fear, uncertainty and drastic worry. This is also part of the impact of the steroids. I do not have to worry about it. If it happens again tonight, we will end up laughing about it.
When the doc left, he gave mum good feedback and said that she was doing a good job.
I feel confident that I can deal with whatever happens next. Now I know that the drugs are making me barmy, I don't mind being barmy. :) :) :)
I have had to call out the doctor today, after two difficult nights at home. My mum called the hospital, who told her to call 111. I answered all the 111 questions that simply check that I am not dying and not suicidal, and the call is concluded with her recommending that I go to GOTODOC at the Manchester Royal Infirmary. I refused to attend. She asked me if I could walk, and I said as far as the toilet. It was agreed that a doctor would be asked to visit, but that I may have to wait. I said this was fine. Blimey, I have had brain surgery, and had to beg for a doctor to visit.
The outcome was that the doctor arrived within the hour, which was brilliant. He checked my pulse, blood pressure, temperature (37.2), movement, breathing, and asked lots of questions about what had happened in the night. My mum had written down her version of what was happening and shared with him that she did not think I was hallucinating, but that I was giggling uncontrollably and completely out of control. She wrote out some of things I was saying, or laughing about.
The doctor has helped us. One of the outcomes of the steroids is ecstasy. Plus my brain has changed with the extraction of the tumour. There are going to be more times when I become ecstatic. Before the ecstacy I am experiencing fear, uncertainty and drastic worry. This is also part of the impact of the steroids. I do not have to worry about it. If it happens again tonight, we will end up laughing about it.
When the doc left, he gave mum good feedback and said that she was doing a good job.
I feel confident that I can deal with whatever happens next. Now I know that the drugs are making me barmy, I don't mind being barmy. :) :) :)
Hallucinations
The other experience that I have had the last two nights is hallucination. I don't know if I can explain what is happening, but I have woken each night believing that I am in the process of dying, and that I must get my mum to help me through it. The reality is that I have made all this up, to the point that I am not even sure that I can explain it.
I am asleep and dreaming that my hands need help to help me die. Or something like this. I phone my mum for help. This took me ages tonight because I decided to text "Oi!/some get off eg. I phome Wx Sarah xxx" What does that mean??? I know it took me ages to text, when what I needed was physical help.
When my mum arrives, I am barking mad. I oscillate from serious discussion to howling with laughter about absolutely anything. Topics that I recall from this evening's little outing include: Fatima Whitbread and her amazing success as an athlete (yes, I know you are wondering why and so am I); my lack of interest in men - will this become revived before it is too late for me; what I like about primary school children; hysterical giggling about absolutely anything. There is more. Basically I am crackers for a while.
I don't think I can undo this properly.
The birds are singing - it is a beautiful sound. There is one bird with a high pitched song, and another with a lower tone. It is starting to get light. I am going to try to sleep.
love you
Sarah xxx
I am asleep and dreaming that my hands need help to help me die. Or something like this. I phone my mum for help. This took me ages tonight because I decided to text "Oi!/some get off eg. I phome Wx Sarah xxx" What does that mean??? I know it took me ages to text, when what I needed was physical help.
When my mum arrives, I am barking mad. I oscillate from serious discussion to howling with laughter about absolutely anything. Topics that I recall from this evening's little outing include: Fatima Whitbread and her amazing success as an athlete (yes, I know you are wondering why and so am I); my lack of interest in men - will this become revived before it is too late for me; what I like about primary school children; hysterical giggling about absolutely anything. There is more. Basically I am crackers for a while.
I don't think I can undo this properly.
The birds are singing - it is a beautiful sound. There is one bird with a high pitched song, and another with a lower tone. It is starting to get light. I am going to try to sleep.
love you
Sarah xxx
The digging and the squelching
Hello there, middle of the night BLOG...
I have "digging" and "squelching" inside my head. The digging literally sounds like someone is in another section of my head, and that they are putting a spade in, pressing down and the shifting soil. It is moved from one place to another. Over and over and over.
The squelching sounds like someone is jumping up and down on a squeaky bed. My mum asked if it sounded like squelchy boots, but I go with squeaky bed.
If I lie down and put pressure on my right hand side, these sounds get started. I don't think you can hear the squeaky bed outside of my head, but I end up wondering if you can. You can't - the squeaky bed is my own local sound. The result of all this is that I am not putting pressure on my RHS.
What do I think it is? I guess it must be my brain getting back in the correct place. I don't know. It could be the recovery of my scar. I do not know exactly what they have done, but I do know that my head has been opened, and then closed. It is likely to be the bone knitting together, too.
I won't but any pressure on the LHS of my head. I have become able to feel the shape of my face, and the healing that is taking place. Right now I have a bump in my forehead, and another bump further round. Around again from this is a section that still has lots of blood on it. When I have the courage to wash hair again, I will give my attention to this.
Whatever I do, my head continues with the digging and the squelching. No doubt it will pass, but right now I find it frightening. I would like it to stop permanently. I have to accept that it stops, but then it starts again.
I have "digging" and "squelching" inside my head. The digging literally sounds like someone is in another section of my head, and that they are putting a spade in, pressing down and the shifting soil. It is moved from one place to another. Over and over and over.
The squelching sounds like someone is jumping up and down on a squeaky bed. My mum asked if it sounded like squelchy boots, but I go with squeaky bed.
If I lie down and put pressure on my right hand side, these sounds get started. I don't think you can hear the squeaky bed outside of my head, but I end up wondering if you can. You can't - the squeaky bed is my own local sound. The result of all this is that I am not putting pressure on my RHS.
What do I think it is? I guess it must be my brain getting back in the correct place. I don't know. It could be the recovery of my scar. I do not know exactly what they have done, but I do know that my head has been opened, and then closed. It is likely to be the bone knitting together, too.
I won't but any pressure on the LHS of my head. I have become able to feel the shape of my face, and the healing that is taking place. Right now I have a bump in my forehead, and another bump further round. Around again from this is a section that still has lots of blood on it. When I have the courage to wash hair again, I will give my attention to this.
Whatever I do, my head continues with the digging and the squelching. No doubt it will pass, but right now I find it frightening. I would like it to stop permanently. I have to accept that it stops, but then it starts again.
Friday, 5 July 2013
Watching the tennis
This is a snap of our evening together. Come on Andy! I would be so excited if Andy could win Wimbledon this year. Hey, I had a brain tumour removed, and Andy Murray won Wimbledon - what a good story that would be.
love you
Sarah xxxxx
Pictures of scar 5 July 2013
Theses are Katy's photos of my scar. I can't believe how quickly it is changing. Looking good. :)
Flowers from Clementines - thankyou
I have a long story with Elsie, that you are probably not aware of. When I was working at Chorlton High School, and previous to this, Martha and Katy attended Clementines every morning and every night. Elsie and Dorothy organised Clementines, and sadly we all lost Dorothy to cancer. I had lost my step father to cancer too, so we were all very connected through this. Elsie supported me through my work at CHS, and was always aware of how tired I was and how difficult I was finding it. She was so happy for me when I resigned my job.
The amazing part of my life was that Elsie told me about the job at Chorlton CE school. I let her know that I was not sure what my childcare requirements would be, and asked her to let me know a date when she would need to know what help I needed.
She said, there is a job here. Apply for a Teaching Assistant role. There is already a qualified maths teacher. It would be perfect for you.
So, I applied, got the job. Thank you Elsie.
love you
Sarah
My stair rail
Hi all, I have managed to put a picture on the BLOG. There are others that I have mucked up, but for now I am going to celebrate this one. Here is my mum on my stairs. I can get up and down safely now.
love you all
Sarah xxxxxxx
ps more photos later :)
stair rail has been fitted
Just letting you know that I have a stair rail. I have not tried it yet, but will later on. I am hoping to be able to watch Andy Murray in the Wimbledon Semi-Finals.
I also plan to learn how to put photos onto the BLOG. If I crack this, I will be delighted. If I don't, then Sarah McCallward will put it on for me. Sarah, thank you for all you help with the BLOG. It really looks amazing.
love you
Sarah xxx
I also plan to learn how to put photos onto the BLOG. If I crack this, I will be delighted. If I don't, then Sarah McCallward will put it on for me. Sarah, thank you for all you help with the BLOG. It really looks amazing.
love you
Sarah xxx
Martha comes home from school
Martha has been sent home from school - she was at a PE day in Trinity, but has crashed out. She has not talked to me much, but we have spent a long time cuddled up in bed with her crying. She has cried and cried and cried. I love her so much. I am relieved that she is starting to express how she is feeling.
Right now, she has taken a big friend of mine, Chris, to the park. No doubt she is hanging upside down from a tree or something like that.
I love you, Martha.
Right now, she has taken a big friend of mine, Chris, to the park. No doubt she is hanging upside down from a tree or something like that.
I love you, Martha.
my drug regime
This is my drug regime:
0600 1 x omeprazole
0630 2 x codeine
0630 2 x paracetemol
0900 2 x docusate
0900 1 x dexamethasone (2mg) see https://en.wikipedia.org/wiki/Dexamethasone http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?condition=Steroid%20responsive%20conditions&medicine=dexamethasone
1200 2 x paracetemol
1200 2 x codeine
1800 2 x paracetemol
1800 2 x codeine
1800 1 x dexamethasone (2 mg)
2330 1 x senna
2330 2 x paracetemol
2330 2 x codeine
Omeprazole is a drug to protect my guts against the steroids.
Codeine is a strong pain killer, and causes constipation. Taking the codeine is optional, but at the moment I generally need to take it.
Docusate and senna are drugs to help keep my bowels moving (and this is working well).
Dexamethasone is a steroid. This reduce swelling within the brain.
I think you can all see what I am focused on today. Gotta make sure we get the drugs in order.
love you
Sarah xxx
0600 1 x omeprazole
0630 2 x codeine
0630 2 x paracetemol
0900 2 x docusate
0900 1 x dexamethasone (2mg) see https://en.wikipedia.org/wiki/Dexamethasone http://www.nhs.uk/medicine-guides/pages/MedicineOverview.aspx?condition=Steroid%20responsive%20conditions&medicine=dexamethasone
1200 2 x paracetemol
1200 2 x codeine
1800 2 x paracetemol
1800 2 x codeine
1800 1 x dexamethasone (2 mg)
2330 1 x senna
2330 2 x paracetemol
2330 2 x codeine
Omeprazole is a drug to protect my guts against the steroids.
Codeine is a strong pain killer, and causes constipation. Taking the codeine is optional, but at the moment I generally need to take it.
Docusate and senna are drugs to help keep my bowels moving (and this is working well).
Dexamethasone is a steroid. This reduce swelling within the brain.
I think you can all see what I am focused on today. Gotta make sure we get the drugs in order.
love you
Sarah xxx
5th July snap
I have become able to feel my head. I have a few lumps and some very bloodied bumps. I can touch my scar which feels numb. It is a long strip of shaved hair. I feel all the shaved hair. I cannot feel underneath it. It is numb underneath. I want to try to wash hair again, but I am going to leave this for today. The bloodied bumps can wait a bit longer. Love you all. Sarah xxx
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