Love Left
Love left.
Slipping unnoticed
Under a door,
Leaving leeched colours
And dutiful behaviour,
And a muted sky.
So she opened a small high window,
Lest the sun-beam should choose
To dance back inside.
Clearing the Air
by Anne E Thompson
As the poison seeped
out from him,
Lifting his heart and
freeing mind,
It flooded her eyes
and blocked her nose,
Drowned her dark, secret places
and eroded her spirit.
It diminished her light
souring her joy,
Leaving nothing light or free
within her.
But he felt so much better
For having said.
Richard
by Anne E Thompson
This is
My friend.
Listens
To me,
Laughs
With me,
At me.
Tells me
Secrets,
Hopes and
Worries.
This is
My friend.
He makes
Me laugh
And shout.
He is
Obstinate,
Opinionated,
Loud and
Clumsy.
This is
My friend.
The clock
In his
Brain
Stopped
When he
Was ten.
His body
Got old
Too quick.
Sometimes
His mouth
Dribbles.
This is
My friend.
People
Say things:
“How kind,”
‘You are
So nice,”
“That must
Be hard.”
They don’t
Understand,
He’s just
My friend.
Night Sounds
by Anne E Thompson
As she lay resting after a long day,
The sound of breaking glass shattered the peace.
She frowned and rolled over,
Knowing the cat must have knocked a vase.
There followed a scream and a steady drip,
And she sighed,
For the pet must then have slipped.
There was a click and footsteps on wood.
She nestled deeper into her pillow,
For there were often draughts and floorboard creak.
A sound on the landing,
She pulled the cover close to her cheek,
The tree outside must be blown ‘gainst the window.
A muffled cry and heavy thud
And she snuggled deeper still,
A restless child must have knocked a book,
And the scratch and drag she now could hear,
Must be mice again, seeking warmth.
Then there was peace and she slept on.
In the brittle sunlight of a new day,
She went downstairs to find,
A smashed window and strangled cat,
Blood soaked footprints across the mat
That lead upstairs and her child was gone.
The only sound was her scream that lingered
On and on.
It’s a Wrapper on the Floor Mum!.
It’s a Wrapper on the Floor Mum
by Anne E Thompson
“There’s a letter from my school mum,
‘Bout a trip to test the sea.
I don’t really want to go tho’
“Cos is only Geography.
I need you to ‘phone my teacher mum,
I seem to have lost a book,
And my shorts are missing too,
Yes, I hung them on my hook.”
“But there isn’t any homework,
It’s just revision instead,
Yes, I’ve prop’ly cleaned up already,
The cup is under the bed.
I need you to buy more shower gel,
The toothpaste ran out last week.
I’ll phone her when I have time,
But don’t expect me to speak.”
“It’s a wrapper on the floor Mum,
Not the start of world war three.
There’s a party at Bill’s ’til late,
‘Fraid I think I’ve lost my key.
The dust will be there tomorrow Mum,
I like my clothes on the floor.
Those socks aren’t mine anyway,
Could you please just shut my door.”
How to Teach Your Child to Read
by Anne E Thompson
If you want to teach your child to read, as a primary school teacher, I am tempted to say:“Don’t!” There are lots of things, like tying shoe laces, identifying birds in the garden and cracking an egg into a cup, which are easiest taught at home and which you will do so much better than a teacher. When done badly, it is actually possible that you might delay your child’s reading or cause problems that can take years to undo.
However, as a mother, I know that teaching your child can be rewarding and fun and we want to do it. This article therefore aims to give you some helpful hints on the sort of things that you might do at home with your child. It also lists a few of the problems that can arise if done badly.
Firstly, the most important thing that you can do is read and let your child see you reading. Children are great imitators and if they see both their mother and their father reading, then they will want to. You can read anything: books, newspapers, recipes, instruction manuals. What is important is that your child sees you reading. Young children who never or rarely see their parents read are less likely to want to themselves because it does not seem important. They are at that stage where they think everything you do is wonderful and will want to copy. (Unfortunately, this stage does not last long. By the time they are teenagers they will think everything you do is wrong, so make the most of it!)
You also need to have lots of reading material in your home. This does not have to be expensive, join the library or visit jumble sales and buy some cheap secondhand books. If children see their parents reading and if there are books in the home, it is a natural step for them to pick up a book and turn the pages. It does not matter if they are only looking at the pictures or saying words that are not in the book, the first stage of learning to read is ‘playing’ with a book for pleasure.
You also need to read to your child. Sit them on your knee and read them a story. They will learn that reading is something pleasurable, that can be done in a relaxed manner and will also start to internalise written language. This can be done at any age (some people even advocate reading to your unborn baby!) It will help your child learn to read as naturally as they learn to speak. Much of reading is to do with prediction (which I will explain in more detail later) and if they have heard, “Once upon a time…” a few times it will help them later when they are decoding for themselves.
Let your child see that you turn the pages one at a time and read the words from left to right, top to bottom. Even before they can read, they will start to copy this behaviour.
If you are a working parent, it can be hard to find time in the day to read with your child. However, it really is important. Try to set aside the same time each day and make it part of the rhythm of the day. It does not matter if it is every day while you eat breakfast or last thing in the evening when they are in bed. Read to them! It is as important as cleaning their teeth!
Do not rush into ‘proper’ reading lessons with your child. There is an age whereby a child is physically too young to learn to read. The human brain is a wonderful organ and it takes about 21 years to be fully developed. Different parts of the brain have different functions and control different things. It develops from back to front and inside to outside. You would not sit your child in the drivers seat of your car and tell him to drive – if nothing else you can see that he is not tall enough to look out the windscreen and his legs are not long enough to reach the pedals. Learning to read also needs physical development, but it is harder to gauge because we cannot see that a child is not ready.
There is a substance called myelin, which I do not fully understand (I am a teacher, not a neurologist!) which is essential for a child to be capable of reading. It somehow enables the eye to carry symbols to the brain and for the brain to then decode them into language.
Now, if a child is ‘forced’ to read before they have developed sufficiently, they will use different parts of the brain to decode symbols (the brain is very clever, if it cannot use one pathway, it will make a different one.) This can then cause problems later and they will have to ‘unlearn’ what they are doing, which is very difficult. For this reason, some countries will not begin to teach reading in schools until a child is aged seven and they can be confident that the brain is sufficiently developed.
However, some children are ready to read long before then – which is why you are reading this article! My daughter learnt to read when she was aged three. One son learnt when he was four, the other was not ready to learn until he was well over five and had started school. There is no correlation between when they learnt to read and their long term academic success. It is not an indication of intelligence, it is an indication of physical development. So do not get involved in competitive mum talk! You may just as well be proud of your child’s hair colour as the age they learn to read!
It can be difficult to know when your child is ready to learn to read. I do not have a foolproof method, so will simply share my own experience.
Firstly, I watched my children. As children develop, they are able to use and control their large limbs first (Swaying an arm to hit a baby mobile) then their smaller limbs (holding something in a fist) then their fine motor skills develop (playing with a thread of cotton and holding it with a finger tip and thumb.) Fine motor skills give an indication of how your child is developing.
Secondly, I played a game with them to discover if they could recognise a symbol. I wrote lots of random letters on a piece of paper (or could be shapes) and wrote one at the top. Then I said: “This is an ‘a’, can you point at the other ‘a’s on the paper?
If they could consistently match letters/shapes, I would begin trying to teach reading. If they did not seem to be learning, I stopped and tried again in a few months.
So, what do you actually do to teach your child to read? I think that you need to understand the different components of reading and give your child experience in all of them. Education is constantly changing and the methods of teaching and testing reading ability seem to change from decade to decade. However, you are a parent, not a teacher, so you do not have to worry about current policy, you can just give your child a varied reading experience and discover what works for you. Here are some ideas which I suggest you muddle up and use in any order as often as you can. Just be sure that every activity is fun.
Reading is very similar to listening. To listen, you hear sounds, your brain sorts the different sounds into words and you derive meaning. When reading, you see symbols (which in English are letters, grouped into words) which the brain then deciphers into meaning. When you listen, you do not hear every word. Much of your understanding comes from the tone and the context and what you feel makes sense. The same is true of reading. When you read you do not look at every letter – you do not even look at every word if reading fluently and quickly. Again, you use the context and what is logical to make sense of what you have read.
Context is very important. You can even ‘read’ things that make no sense because you will use your understanding of how language works to fill in the gaps. So, if you read:
“Judy loved to blimp. Every morning she went blimping. Whatever the weather, rain or shine, Judy could be found blimping away. When she thought back over her year, Judy realised she must have ……… a thousand times.”
If you are a fluent reader, you will probably decipher the last sentence as “Judy realised she must have blimped a thousand times. This is with you having no idea what the verb ‘to blimp’ means!
You can teach your child to use the context of what is being read by asking them to predict the end of phrases. Ask them to read with you and when you read “Once upon …” let them read “…a time.” Sit so your child can see the words, you read the story but leave some gaps where there are ‘obvious’ words and let your child say them. This is developing their prediction skills and their ability to use the context of what is written. Later, when they are reading on their own, they will also use the pictures as part of the context that helps them decode the text.
Another part of reading is word recognition. There are words which we hardly need to look at, we know their shapes so well. I would teach word recognition as a separate activity to reading. There is, in my view, a real danger that children will focus too much on individual words and not enough on the meaning of the text. We want our children to become fluent readers, not people with amazing memories who can remember thousands of words.
One good way to teach word recognition is to cut up some cardboard and write some simple words on it. Then play a game of ‘pairs’ or ‘bingo’ with the words. Then, when you are reading to your child, if you come to one of the words that they have learnt you can stop and let them read that word. Reading then becomes a shared activity, with you reading most of the story and them filling in any words they have learnt to recognise and any that are obvious from the context. Gradually, they will read more and more of the text themselves.
Children need to see lots of words and several different types of text. If they are cooking, help them follow a simple recipe. If you have time, write out a recipe for them, if nothing else they will learn lots of imperative verbs. (Imperative verbs are bossy verbs, like ‘put’, ‘fill’, ‘place’.)
Some people make word cards and place them around their house, so every coffee table, kitchen appliance, door, etc is labelled. I expect that this does help children to recognise words (however, I personally would not want to live in that house, so I never did that with my own children . Plus my children were quite inventive, so would probably have switched the labels around, thus confusing the youngest!)
Magnetic letters on the fridge are a fun way for children to practice making words. Do check them though, one of my children wrote lots of mis-spelt swear words. He thought that as he’d never heard me say them I would not know what they were! It was funny, but slightly embarrassing when visitors came.
Another part of reading is phonics (the sounds of letters.) A fluent reader rarely uses phonics unless they are introduced to a new word. It slows the flow of reading and is fairly inaccurate. Most people do not say the pure letter sounds, so ‘l’ becomes ‘le’. If you sound out ‘le’ ‘o’ ‘o’ ‘ke’ ‘e’ ‘de’ it is very unlikely you will decipher ‘looked.’ However, it can be useful in giving children a clue about what a word might be.
Again, I always taught phonics as a separate lesson to reading. It is a natural part of a spelling lesson and when children have internalised phonics they will use them very naturally when reading. If they are directed to ‘sound out’ words too often then they start to focus all their attention on individual letters and all meaning of the text is forgotten. It is possible to say all the correct words and not actually derive any meaning from the text. If given some German to read, I can probably say all the words correctly but will not have any idea what the text is about. Unfortunately, some children learn to read like this. They are able to say the sounds of the letters to form words, but the words never seem to touch their brain, to have any real meaning. They have to listen to themselves speaking to understand what the words mean, which obviously slows up their reading and is not what they should be doing.
A good way to teach initial letter sounds is to play “I spy”. You can use either letter names or letter sounds (your child needs to learn both) and they will gradually build up a good knowledge of words that begin with the same sounds. You can always write the letter on a piece of paper, so they also begin to recognise the shape.
I often told “The Magic Pens” story (see under children’s stories at anneethompson.com Story link here.) It is best told rather than read and I would tell it to the class whilst writing the relevant words on the white board. The children always, unprompted, would join in with chanting the lists of words, which made a fun way for them to learn phonics. Also, as the initial letter is a different colour, it helps dyslexic readers. It was a great time filler when waiting to go for lunch or assembly and the children always enjoyed it, especially if we included some naughty words like ‘bum’! It can be extended by the teacher returning to the classroom in the morning and making a sentence with the words, such as: “Kit wanted to sit but a nit bit her so she had a fit.” You can do the same activity at home. If you write a sentence with the words, put it on the fridge and your child can return to them throughout the day and read what was written. Obviously, change the letters used each time, so the child begins to build up a good knowledge of letter blends. You can also start with initial sounds, such as ‘br’ or ‘ch’ and change the story accordingly.
{Incidentally, I have only ever told the Magic Pen stories in a classroom. If you try them at home, please let me know if they are still fun and if the child joins in! }
Your child also needs to read books. Proper, child friendly, story books. It does not matter if they cannot initially read every word, they need the opportunity to explore them and to practice reading. Try to find some simple books that have very repetitive language. Read the story to your child a few times first (Yes, they will remember the words, that is okay, reading uses memory!) If there is a word they cannot read, just tell them. Do not tell them to ‘sound it out’, that takes all the fun out of reading. If they are asking you for help,that is excellent, they are showing that they understand the text has meaning and they want to know what it says.
Do not ever be tempted to buy the books from the school reading scheme. Your child’s teacher will be using them to both teach and as a diagnostic tool to assess your child’s progress. If your child has read them at home, they will give an unrealistic performance (which the teacher will be aware of) and will also be bored with them and not want to read them again at school. It is hugely unhelpful and will slow their progress. If your child’s teacher wants the child to practice the school books at home, they will be sent home for you to borrow.
Do not force a child who does not want to read to begin learning. I home-schooled one of my children when we were living abroad and I found reading a real tension point. It really mattered to me that he should read fluently and he decided he did not want to learn. (This is the child who every day picked up his pen by the wrong end and told me he could not remember which way round it went! Some children need more patience and prayers than others….) I did teach him eventually – mainly thanks to finding some simple books about a dragon who had a pet cat that pooped everywhere, which appealed to my son immensely! However, he never enjoyed reading. Even as a teenager, he would pay his younger brother to read to him the books set by his school while he did something ‘more interesting.’ I do not know if his personality means he would never have enjoyed reading or if my daily frustration with his four year old awkward self somehow left a lasting impression. If I could turn back the clock I would tell myself to stop trying, have a rest and start again in six months time.
On a similar vein, do let older children choose their own books. Another mistake I made was when my daughter, who had read fluently from a very young age, was about eight. I decided that she should be reading books that would extend her and gave her lots of the child classics (The Railway Children, Little Woman, that sort of thing.) She just wanted to read simple tales of magic and princesses! After a while, she stopped reading for pleasure completely. She did, after a year or so, begin again but I had made the mistake of taking the fun out of reading. It has to be fun. If children enjoy reading, they will always read. We might enjoy reading Dickens, but we need a few novels in between time too.
Your child will learn to read at his/her own pace. Just as some children learn to walk as early as ten months of age and others are well over a year, so some children acquire reading skills very quickly and others learn more slowly. Try not to worry and absolutely do not start comparing with other children! You have been given a very special role in raising your child, let them develop at their own speed, they are not like anyone else. If they seem completely disinterested in reading, stop trying to teach them (but do not stop reading to them) and enjoy other experiences instead. If there is a problem, your child’s teacher will alert you but probably your child is just not quite ready to start learning yet.
Watching your child learn to read is hugely rewarding and very exciting! I hope that you will both enjoy the experience and it will be special activity that you share.
More articles, stories and poems at: anneethompson.com
Thank you for reading
anneethompson.com
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******
When I first saw you,
I looked into your eyes,
And saw my own.
My head,
My nose,
In miniature.
You helplessly
Demanded food,
And I was lost,
In love for you.
I knew,
Without a doubt,
If I needed to,
I would die
For you.
A facebook Lesson
by Anne E Thompson
I had cycled down to visit my mother. We sat on her sofa, slurping tea, when Mum said she could not see any of my photographs on facebook. We spent some time looking at her computer (which is actually an ipad my brother lent her) but neither of us could work out what the problem was. Then she asked me why I never send her messages on facebook. I explained that I would much rather use email, because I don’t really know what I’m doing and I might send them to the wrong place.
“Oh!” she said, “It’s easy, I’ll show you. Look, Ruth has posted a picture of chocolate, I’ll just send her the message ‘Ha,Ha,Ha’!” She did.
Then she realised that actually, she had not sent the message to Ruth. She had sent the message to somebody’s prayer request on one of her religious sites! All the other posts were things like, “I feel for you,” or, “God bless you in this time of need,” – then there was “Mary Thompson: “Ha,Ha,Ha.” We could not stop laughing! It was so funny and of course, neither of us had the first idea if it was possible to ‘unsend’ a message once it was sent! We laughed for ages, but it did rather illustrate my point…..!
How to Have a Brain Tumour
(Or any other serious illness)
by Anne E. Thompson
This is simply an honest account of the things I wish I had known when I had a brain tumour. It is necessarily subjective and you will disagree with some of it but I hope that some of it is useful. I have added to these notes, edited them, and produced a little book that’s now available on Amazon. (You can read it for free if you have a kindle.) I hope these thoughts are helpful.
Finding Out
You will probably have either a CT scan or an MRI. A CT scan is much quicker but uses lots of radiation – about 13 times the amount of a normal X-ray. An MRI is scary before you have had one but is nothing more than lying on a hard bed. The amount of time it takes seems to depend on the age of the machine. I dislike confined spaces so always keep my eyes shut.
The main thing to know is that it is noisy. At my first MRI I was offered a choice of music to listen to whilst in the machine. However, when it began the machine was so loud I could not hear anything. It made me laugh and I still have no idea why they offer it. The machine sounds like someone is digging up the road right next to your head. Sometimes the machine also vibrates. I am always sure that there has been a nuclear explosion and I am the only person left alive, but when I emerge everyone is completely fine.
Sometimes they inject you with a dye because some tumours enhance with contrast. If they are planning to do this, you may have a blood test a few days before so they can check your kidney function is good enough to flush out the dye afterwards. The rules on this seem to change quite often. They inject the dye into your arm. I told my mother that they put it in one ear and I had to lie on my side while it dripped through my brain (it made me laugh…) My cyst did not enhance and I did not much like being injected with dye unnecessarily, so I asked for them to not do it after the first couple of MRIs. Remember, it is your body and if you would prefer for something to not happen, it is okay to ask if it is necessary. Sometimes we just accept everything that happens and feel it would be rude to ask questions. It is not.
When you first discover you have a brain tumour, whatever the type, it is shocking. I put it in the same category as cancer – it was something completely horrible and soon I would be dead. However, a little research shows that there are many different types of brain tumour (as there are cancers) and some are more sinister than others. That said, I personally think they are all nasty. So, what to do?
All this took time. Meanwhile I had looked on the internet. This has mixed results. I did not understand much of what I read and a lot was very scary. “Sudden instant death” seemed to be a feature of my particular tumour (a colloid cyst), which was not terrifically reassuring. If I could go back in time, I would tell my newly diagnosed self that things move very slowly in the medical world, so learn patience (unless they think something is life-threatening, then they move quickly. So, if the medics are being slow, probably you will not die today.)
However, you can be proactive. You can ask your GP for the number of the person they are referring you to and you can then phone their secretary and make an appointment. You do not have to wait for your GP to write, then for the next person to receive the letter and write back with an appointment. It does not speed things up much but it helps you to feel that something is happening.
Finding a Surgeon
At some point, hopefully fairly quickly, you will meet a brain surgeon. I don’t know how the system works in other countries, so this advice is based on the UK.
Living with the Stress
Okay, so whether they operate or not, you will probably be rather stressed. There are a few ways that I found it helpful to deal with this.
Occupy your mind. I found that I could not stop thinking about the fact that I had a brain tumour and was in danger of it defining who I was. It is impossible to ‘not think’ about something, so I think filling your mind with something else is a huge help. I started to learn Mandarin at the same time as my diagnosis and this was wonderful. I am not a linguist, cannot speak any other language at all and gave my language teachers at school nervous breakdowns. However, Mandarin was fabulous. It is fairly difficult, so I concentrated with my whole mind during lessons and there was no time to worry about anything else. When the pain was horrible and I could do nothing all day, I could at least listen to a DVD in Mandarin, and I felt more positive about myself. Learning words was a great distraction in all those boring hospital waiting rooms. Obviously a language might not be your ‘thing’, but I really would suggest that you find some hobby to occupy your mind and give it a break from worrying. Whether it is chess, knitting or kick-boxing, find something that is quite difficult, fits into your schedule and that you enjoy.
Secondly, do some exercise. Whether they operate or not, you want a healthy body. Cycling as fast as you can or swimming a few laps, is another good way to burn off some stress and give yourself a break. Even if you are too weak for anything else, go for a walk. I had lots of pretty bad headaches but I found that cycling did not make them any worse and I felt better in myself after I had exercised. You should check with your doctor that you are safe to exercise, but if there is no reason not to, I would say force yourself to.
Thirdly, be nice to yourself. If it was a close friend suffering, you would give them treats, encourage them to do things they enjoy, etc. Do the same for yourself. You are special, going through a tough time, allow yourself some treats.
Try not to face things you do not need to. Sometimes our thoughts run away with us and we imagine being handicapped, mute, dependent and so on, when actually these things are unlikely to happen today. Try to live in the present, each day face what has to be faced that day. Don’t worry about the future until you have to. (You could still get run over by a bus, then all that worry will have been for nothing.)
Pray. If you have sorted out what you believe, now is the time to put it to the test. It’s not worth having faith in something that cannot help you right now. Praying is not a ‘genie in a lamp’, it changes us over time but I do believe that it helps hugely. If you decide that you do not believe in any God at all, then I don’t know what to suggest (maybe re-think?)
If You Are Having Brain Surgery
Depending on the type of tumour, surgery might happen very quickly or not at all. I was told that my tumour was unlikely to ever change and they would simply monitor it. After five years, it did change and within a week it was removed. Many people have their tumour removed as an emergency procedure and have no real choice. However, if things move a bit slower, what do you need to know?
Firstly, is the surgeon you have been seeing one that you trust to operate? There is a lot on the internet about surgery going wrong, people being left mute or unable to move and so on. Do not bother to read that. All that really matters is, has your surgeon operated on this type of tumour a few times before? If he has, how many of his patients were left with serious complications? Then you can make your decision. If you do not trust him, find a new surgeon. This is not something you want to mess about with and it is important to really trust the person who’s going to be fiddling inside your head.
Secondly, decide what you want to know. I am a coward. When my consultant started to explain what he planned to do, I stopped him and said that I planned to be asleep during the operation and did not need to know anything. This was a slight mistake. True, I did not need to know about the actual operation (though some people would want to know) but I was completely unprepared for what would happen before the operation.
For example, soon after arriving at hospital the day before surgery, a very nice young doctor came to attach stickers to my head. They were about 2cm diameter and were put in several places around my head. Each one needed hair shaved off first and then she drew around them with a marker pen. For some reason, this was very perturbing. I had of course known that some hair would be shaved but I had assumed I would be asleep. I also found being drawn on weirdly dehumanising. It was silly and the stickers were necessary (they did an MRI which showed the stickers and then used this as a map during surgery) and actually I found the reason very interesting but I was unprepared and so it knocked my confidence. I then had to walk down to the MRI room covered in pieces of chopped off hair. Again, had I known, I could have brought in an old shirt and used it as a ‘hairdresser’s gown’ to keep the hair off my clothes.
I also did not know what I needed to take to the hospital. This was in part the fault of the hospital, who should have sent me a list however, brain surgery is often done quickly and things get forgotten. I should have phoned the ward and asked what I needed to bring in the way of towels, clothes and food.
Do take a mobile phone and recharger. I found that friends and family sent texts and emails and this was a huge support and made the whole experience strangely special. I was never alone. However, take some care with what you send after surgery. I sent a ‘selfie’ to show my mother how I looked to help prepare her. I have no idea why I also sent it to people who I hardly know, my child’s school, the postman, etc. My daughter checked my phone after my surgery and had to send some explanatory texts to a few people. Brain surgery does somewhat muddle us.
I also should have asked what I should expect after the operation. It can help to prepare visiting relatives if they have some idea of how many machines you will be attached to, if you will be able to speak, will you be in pain and so on. One of my children arrived at hospital expecting me to be sitting up in bed chatting. He told me that seeing me look like I was dead was very traumatic and he would never visit me in hospital again unless I was dying. This could be a problem if I break a leg and he arrives – it will be like a visit from the Grim Reaper. However, joking aside, it is good to prepare both ourselves and our visitors.
I read that my surgery often results in memory loss. If that is also the case for you, it is worth writing down PIN numbers, passwords and important numbers and making sure that someone else knows where they are.
If the surgery affects the left side of your brain, it may affect your language. This is not just your ability to speak but also to form words in your head. This will probably improve over time but it is worth letting people know beforehand—you cannot speak, them giving you something to write with will probably not help much.
After surgery I mostly slept. I was nauseous but the nurses gave me anti sickness pills. They also gave me injections to prevent blood clots (in the stomach – most unpleasant.) I was on a drip. I had a drainage tube in my head and before I came home this was removed and the hole was stitched. The stitches hurt – listen to something distracting or recite poetry or something.
I went home five days after surgery. My face swelled up, starting at the top, then my nose (I looked like a centaur.) Apparently this is normal but I was not expecting it so I worried.
I also had problems with my ears, everyone’s voices sounded weird, as if they were a Darlek. I heard popping noises and buzzing. Again, this was normal and due to excess fluid settling down, but I did not know and so was worried.
Prior to surgery I had hydrocephalus (fluid on the brain.) This caused a bruised feeling at the top of my head, like a hairband was pulling my hair, even though there was no bruising when I touched it. After surgery, I sometimes had the same feeling, especially when lying down. I was worried but the surgeon told me that the fluid levels in my brain were having to readjust and it would take time, so the feeling was normal.
Similarly, reading anything in the morning had been difficult due to the fluid levels (I did not have double vision but to focus on small print was uncomfortable.) This also continued for a couple of weeks after surgery. I also worried about my stitches. They became very itchy and the wound felt tight. Again, this was normal and a doctor could reassure me that the wound looked healthy and was not ‘angry’ or inflamed or weeping.
I was expecting a lot of pain after surgery but actually there was very little. In hospital they gave me morphine a few times (which I have since added to my Christmas list but am not hopeful.) but mostly I just took paracetamol. I did have a few headaches but they were not as bad as the pain prior to surgery. I was very worried about things like sneezing in case I dislodged something important. I did sneeze soon after surgery and nothing bad happened.
Whatever the reason for being in hospital, it seems very normal to feel anxious afterwards. I know some completely sensible people who had a panic attack after being in hospital and I found that I worried about the tiniest thing. It did improve. I think perhaps it is because we lose all control when we are in hospital and it can be scary when you first get home. I also felt that I had been brave enough and I could not be brave about anything else afterwards.
I was told that it would take six months before I started to feel ‘normal’. I did not believe them. After six weeks we drove to Italy for a holiday and I expected to feel completely well afterwards. I did not. Brain surgery takes a long time to heal. You will need to rest a lot. Fill the freezer with easy meals, arrange for someone else to look after your animals and try to relax. I think that people tend to feel different afterwards too. I have heard people talk about the “old me” and the “new me”. It is not terrible, you will adjust, you just need to allow yourself time. My surgery was on the right side and they removed a cyst from the third ventricle (the middle of the brain.) I still find multitasking difficult and I burn most things that I cook. I am assuming that eventually this will improve or I will find new ways of doing things.
Whether you are reading this because you have a brain tumour or because someone you care about does, remember, it does not have to be as scary as we fear. Even when life is unpleasant, there are usually new things to learn and unexpected special times.
Thanks for reading. Take care.
Love, Anne x
How to Have a Brain Tumour
by Anne E. Thompson
I must begin by stating that I merely have an Honours degree in Education and an outdated first aid certificate, so nothing I say should be taken as having any medical knowledge at all. This is simply an honest account of the things I wish I had known when I had a brain tumour. It is necessarily subjective and you will disagree with some of it but I hope that some of it is useful.
Finding Out
You will probably have either a CT scan or an MRI. A CT scan is much quicker but uses lots of radiation – about 13 times the amount of a normal X-ray. An MRI is scary before you have had one but is nothing more than lying on a hard bed. The amount of time it takes seems to depend on the age of the machine. I dislike confined spaces so always keep my eyes shut. The main thing to know is that it is noisy! At my first MRI I was offered a choice of music to listen to whilst in the machine. However, when it began the machine was so loud I could not hear anything. It made me laugh and I still have no idea why they offer it.
When you first discover you have a brain tumour, whatever the type, it is shocking. I put it in the same category as cancer – it was something completely horrible and soon I would be dead. However, a little research shows that there are many different types of brain tumour (as there are cancers) and some are more sinister than others. That said, I personally think they are all nasty.
So, what to do? I suggest that you try to find out some facts. This is not always easy. I was diagnosed incidentally after a CT scan due to a bumped head. The hospital told me nothing and sent me to my general practitioner. He told me nothing and sent me to a neurologist. He told me very little (he told me he had read about them!) and sent me to a neurosurgeon. All this took time.
Meanwhile I had looked on the internet. This has mixed results. I did not understand much of what I read and a lot was very scary. “Sudden instant death” seemed to be a feature of my particular tumour (a colloid cyst), which was not terrifically reassuring.
If I could go back in time, I would tell my newly diagnosed self that things move very slowly in the medical world, so learn patience (unless they think something is life-threatening, then they move quickly. So, if the medics are being slow, probably you will not die today.)
However, you can be proactive. You can ask your GP for the number of the person they are referring you to and you can then phone their secretary and make an appointment. You do not have to wait for your GP to write, then for the next person to receive the letter and write back with an appointment. It does not speed things up much but it helps you to feel that something is happening.
Decide how much you want other people to know. I decided that my children (then all teenagers) would realise that something was wrong and actually not knowing is more worrying than knowing. I wanted them to trust in the future that I wasn’t holding back information, so I was open with them from the start. Obviously that depends on the age and personality of your children. However, you will need some support, so I strongly recommend you tell some close friends or relatives. Choose who you tell carefully. Some will immediately plan your funeral, others will offer practical help, others will just tell as many other people as they can and invent any details they are unsure of.
Sort out what you believe. Brains are in a compact space with not much room for anything else. Many people live for decades with benign brain tumours and never even know that they have one. However, mostly they cause trouble. I think it is sensible to be realistic about this and it is a good time to sort out exactly what you believe in terms of religion. Most of us tend to follow our parents’ faith (or lack of) and it’s easy to never actually make clear decisions for ourselves. Now is an excellent time to change that. Personally, I have been a Christian my whole life, but this made me really think about what I actually believed as opposed to ritualistically ‘followed due to habit’. None of us know when we will die, but being faced with a possibly terminal illness is definitely not the time to delay making a few grown-up life decisions. Our society dislikes talking about death. I am not sure that this is always very helpful. Modern medicine is amazing, but no one lives for ever, so decide what you think will happen next. It also helps to take away some of the fear. If the worst that can happen is death and you have sorted out your beliefs on that, then some of the fear will go too.
Find some people who are in a similar position. I did not know anyone who had ever had a brain tumour or brain surgery. However, I soon found a chatroom called “Braintalk Communities” and found a wealth of helpful information and could read about people who felt the same as me. I later joined a group on Facebook, which was very similar.
Obviously you need to use some common sense, some people will be depressed or lonely or have other issues that make them write things that may not be especially balanced. However, mostly I found it a huge support and a wealth of information. If you cannot find a group that relates to your tumour, I would recommend starting one!
Finding a Surgeon
At some point, hopefully fairly quickly, you will meet a brain surgeon. I don’t know how the system works in other countries, so this advice is based on the UK. Decide what you want to ask. You may want all the details about your tumour, you might just want to know what s/he plans to do. However, it is worth being clear with your questions and I would recommend writing a list beforehand.
Take someone with you. It is amazingly easy to not hear correctly when you are stressed! If you have someone with you, they can often explain things you didn’t understand and repeat information that you misheard or forgot. However, agree beforehand whether you want them to speak during the consultation or just listen.
Decide what you want from your surgeon. If they intend to just observe the tumour, you might want the surgeon to be someone very approachable who you can discuss things with. If s/he plans to remove it, you probably don’t really care what their conversation is like, you just want a good surgeon.
In the UK you have a choice. I did not find my first neurosurgeon very easy to talk to, he tended to try and convince me of a course of action rather than answer my questions. (When I asked “How big is the tumour?” I did not want to be convinced it was too small to undergo a dangerous operation, I just wanted to be told the size.) I knew, from various chatrooms, that it was possible to change surgeons and this is normal and not a massive insult to the one who you change from. I read on the chatroom about a surgeon at NHNN in Queens Square who sounded good and I asked my doctor if I could switch. She wrote a letter, and it was as easy as that. I am so very glad that I did.
It is of utmost importance that you trust your surgeon. It removes a lot of anxiety, so decide what you need, ask different people for recommendations and find one.
It is also worth learning a few phrases that surgeons use. I do not mean especially technical terms, but sometimes what we hear is not what they mean to say. For example, I was repeatedly told my tumour was “asymptomatic” when clearly it was causing headaches. I felt as if they thought I was lying about the pain! However, what they meant was that they could not find a proven physiological reason that showed on scans for the tumour to be causing pain. I think the hydrocephalus was very intermittent, and because they could not see it, they did not acknowledge it. Once we cleared up the terminology problem, we could discuss the pain and I was referred to a neurologist for pain relief medicines.
Living with the Stress
Okay, so whether they operate or not, you will probably be rather stressed. There are a few ways that I found it helpful to deal with this:
Occupy your mind. I found that I could not stop thinking about the fact that I had a brain tumour and was in danger of it defining who I was! It is impossible to ‘not think’ about something, so I think filling your mind with something else is a huge help. I started to learn Mandarin at the same time as my diagnosis and this was wonderful. I am not a linguist, cannot speak any other language at all and gave my language teachers at school nervous breakdowns. However, Mandarin was fabulous. It is fairly difficult, so I concentrated with my whole mind during lessons and there was no time to worry about anything else. It also was a great distraction in all those boring hospital waiting rooms. Obviously, a language might not be your ‘thing’, but I really would suggest that you find some hobby to occupy your mind and give it a break from worrying. Whether it is chess, knitting or kick-boxing, find something that is quite difficult, fits into your schedule and that you enjoy.
Secondly, do some exercise. Whether they operate or not, you want a healthy body. Cycling as fast as you can or swimming a few laps, is another good way to burn off some stress and give yourself a break. Even if you are too weak for anything else, go for a walk. I had lots of pretty bad headaches but I found that cycling did not make them any worse and I felt better in myself after I had exercised. You should check with your doctor that you are safe to exercise, but if there is no reason not to, I would say: force yourself to!
Thirdly, be nice to yourself. If it was a close friend suffering, you would give them treats, encourage them to do things they enjoy, etc. Do the same for yourself. You are special, going through a tough time, allow yourself some treats!
Try not to face things you do not need to. Sometimes our thoughts run away with us and we imagine being handicapped, mute, dependent and so on, when actually these things are unlikely to happen today. Try to live in the present, each day face what has to be faced that day. Don’t worry about the future until you have to. (You could still get run over by a bus, then all that worry will have been for nothing!!!)
Pray. If you have sorted out what you believe, now is the time to put it to the test! It’s not worth having faith in something that cannot help you right now. Praying is not a ‘genie in a lamp’, it changes us over time but I do believe that it helps hugely. If you decide that you do not believe in any God at all, then I don’t know what to suggest (maybe re-think..?)
If You Are Having Brain Surgery
Depending on the type of tumour, surgery might happen very quickly or not at all. I was told that my tumour was unlikely to ever change and they would simply monitor it. After five years, it did change and within a week it was removed. Many people have their tumour removed as an emergency procedure and have no real choice. However, if things move a bit slower, what do you need to know?
Firstly, is the surgeon you have been seeing one that you trust to operate? There is a lot on the internet about surgery going wrong, people being left mute or unable to move and so on. Do not bother to read that! All that really matters is, has your surgeon operated on this type of tumour a few times before? If he has, how many of his patients were left with serious complications? Then you can make your decision. If you do not trust him, find a new surgeon. This is not something you want to mess about with and it is important to really trust the person who’s going to be fiddling inside your head.
Secondly, decide what you want to know. I am a coward. When my consultant started to explain what he planned to do, I stopped him and said that I planned to be asleep during the operation and did not need to know anything. This was a slight mistake. True, I did not need to know about the actual operation (though some people would want to know) but I was completely unprepared for what would happen before the operation…
I have described the surgery, and my recovery in my book: How to Have a Brain Tumour by Anne E. Thompson. It has helpful information about what to take into hospital, how to get back your driving licence after recovery, and what to expect after a craniotomy. You can read it for free if you have a Kindle, and it’s also available as a paperback, available from an Amazon near you. Amazon Link Here
I think that people tend to feel different afterwards surgery. I have heard people talk about the “old me” and the “new me”. It is not terrible, you will adjust, you just need to allow yourself time. My surgery was on the right side and they removed a cyst from the third ventricle (the middle of the brain.) I still find multi-tasking difficult and I burn most things that I cook. I am assuming that eventually this will improve or I will find new ways of doing things.
Whether you are reading this because you have a brain tumour or because someone you care about does, remember, it does not have to be as scary as we fear. Even when life is unpleasant, there are usually new things to learn and unexpected special times. Things will still be funny, you will laugh again; be kind to yourself and never stop hoping.
Take care.
Love, Anne x
New York and Denver to Las Vegas.
New York and Denver to Las Vegas
Excerpts from a family holiday diary
August 2010
Thursday: Flight from Heathrow. David used his Virgin Gold card to get us all into the executive lounge. Very nice, will forgive him for all those business trips. We made good use of the facilities. Becky had a haircut. We had cocktails and champagne, then a meal. Boys played snooker while we read papers and had coffee. Very nice.
Flew Economy to JFK. Flight lasted forever.
Arrived JFK. Got monorail to Avis. Rented totally massive car.
Drove to Hilton in Montvale. Nice but am way too tired.
Friday: Got bus into Manhattan. Checked into W hotel in Times Square. Very trendy. Suite. Bathroom had a glass wall, very strange – who wants to watch someone using the toilet?
Looked down into Times Square. Pedro spent ages looking out and learnt the sequence of all the electronic billboards. Can recite them. Sad. Clever, but sad.
Walked around. You feel like you are in a movie set in NY. So many people, everyone rushing, shops you can get lost in, sirens and cars beeping, smells wafting from all the fast food places and delis.
Ate at Smith and Wollenskys. David and James shared a huge steak (half a cow.) I ordered chicken, expecting a portion and a WHOLE chicken arrived! Delicious food but too much. Excellent red wine. Fun evening, ate and laughed a lot. Didn’t see anyone famous.
Saturday: Breakfast at Starbucks.
We all queued outside Abercrombie and Fitch, waiting for it to open. I had an argument with a woman who pushed in. Can’t quite believe I did either of those things, embarrassing.
Went downtown. Saw Statue of Liberty, China town, Little Italy. It’s nice to just walk around, looking at places.
Lunch in a diner. So american! Had booths and everything! Pedro had philly cheese steak. Very NY.
Got bus to Woodcliffe Lake, then taxi to Hilton.
Dinner at Applebees. A comfortable restaurant, reminds me of Beefeater in the UK but with lots of sports paraphernalia on the walls. Becky got told to move further from the bar – I always forget how strict the US drinking laws are.
Shopped.
Really really tired.
Sunday: Church at Cornerstone Christian Church in Wycoff. Saw a few people we recognised. Good music with a band, interesting talk, friendly people.
Went into city with some friends. Ate at a mexican restaurant. They kept bringing us huge platters of food. Really nice.
Walked through central park and round zoo. Very hot. Central Park always surprises me, such a big park in the middle of the city. Saw lots of places I recognise from films. The zoo is small and smelly but nice if you like zoos (which I do.)
Back to friend’s house. Take-out pizza.
Monday: Pancakes at IHOP on Route 17. Perfect! Quantities still huge though. It is not possible to only order one pancake, they come in stacks. All the coffee everywhere is ‘bottomless’ (free refills) which is wonderful.
Went to a friend’s pool. Swam, chatted, relaxed. BBQ chicken and corn with friends. Then went to Paramus Park Mall in the evening. So big! Dairy Queen ice creams, then said goodbye – always sad.
Tuesday: Gym and swam at hotel. It’s a nice hotel, very inexpensive and convenient being so near the city but also in New Jersey, so you can see a little of ‘real’ America too. Breakfast in hotel lounge. Bagels – I had forgotten how fantastic the bagels are in NY.
Drove round Upper Saddle River, saw the house where we used to live. Remembered all the traffic laws – like having to drive slowly past schools, not being allowed to park on the street at night, having to stop if you see a stationary school bus. Also all the ‘unwritten’ rules, like watching the opposite traffic lights and moving the very second your light turns green or you get honked!
Went to Summit, met friends.Sandwiches from a deli for lunch. Had forgotten how easy it is to get nice food in US. Summit is nice, lots of trees, lots of typically american houses, clean and peaceful.
Went to town pool. In US, most towns seem to have a town pool. You have to be a resident of the town to become a member but can then invite friends. It’s where people meet their neighbours and spend summer afternoons. It doesn’t really have an english equivalent.
Wednesday: Breakfast. Packed.
James informed me that if you hide shampoo they keep leaving more. (Horrid image of hotel shampoo stashed in mini fridge comes to mind…..) Becky added that it doesn’t work with hairdryers. (Not sure how she would know that.) The boys swivel chair was in the bathroom. They told me they had used it in a game. I decided not to ask… (Tip for parents of boys: If its not dangerous, illegal or mean, then you are probably happier not knowing.)
Boys raved about how comfortable their beds were and even went as far as looking at the name on the mattress!
Newark airport. Awful.
Flew to Denver.
Collected another car the size of a caravan and drove to Best Western in Dillon. Next to a lake. Very pretty.
Ate in an American Restaurant. Nice.
James threw lemonade over Pedro, who was surprisingly good about it.
Thursday: Beds do not compare well with Hilton, bad night’s sleep.
David went for early walk and came back with coffee for everyone.
Breakfast bar in hotel. James used internet in lobby. I looked at views across lake.
Supermarket trip. Family stocked up on bottles of water and gateraid (which no one likes, so not sure why.)
Drove. Went through a dodgy town (it had a ‘Kum and Go’ – didn’t stop to find out WHAT that was!) Listened to audio book. Drove. Denver to Vegas is shorter on the map…..
Amazing scenery. Amazing weather. Few rain showers, fantastic clouds, snow at one point when we were really high. Mountains, lakes, trees, rivers, cattle ranches.
Stopped at Bongo Billy’s deli (yes, real name!) and bought sandwiches. Boys bought food from a Subway opposite.
Had ice creams in Ouray. Cute houses, looks like a cowboy film set. Spent some time wandering around. Interesting curiosity shops.
Drove up a steep mountain pass – scary. Brilliant red rocks. Followed annoyingly slow lorry.
Pizza Hut in Durango.
Arrived at Holiday Inn in Cortez. Really nicely decorated with lots of American Indian stuff.
Friday: Slept well.
Breakfast not so good. Polystyrene plates and plastic spoons. David burnt finger on bagel. I put sugar on oatmeal, then discovered it was mushroom soup (don’t know how I missed that one!)
Got petrol.
Becky spotted meercats. But they aren’t really meercats, must be cousins.
Found track to Valley of Gods (not easy, drove along someone’s driveway at one point. Lucky we didn’t get shot.) Saw amazing rocks. Road very rough.
Back on main road. Totally straight, no bends for many miles.
Saw eagles eating dead horse.
Looked at American Indian stuff on stalls next to road. Interesting but expensive.
Went to a visitors centre. Looked across a valley to an ancient town built into canyon wall. Looked like a toy town because the canyon is 4 miles across.
Drove to Tuba City, checked into Quality Inn Motel.
Lots of American Indian stuff.
Ate in restaurant next door. All other customers Native American Indian. Not sure if that’s a good sign or not. Nice pink lemonade. Very pink. Menu had food poisoning warning at the bottom, rather put me off my dinner.
Bad night due to motel having a blocked toilets problem (not ours). Maybe related to food poisoning warning on menu…..
Saturday: Went to Indian Trading Post. Interesting, some good stuff.
Drove to Grand Canyon. Found really good place to stop, amazing views.
Saw eagles soaring. Beautiful. You cannot help but be amazed at the size of the canyon. It deadens all sound and sucks you into its peacefulness. Best if you avoid the main car parks which are touristy. Bought a Christmas ornament.
Drove to Las Vegas. Queues at Hoover Dam, checking for terrorists.
Drove down The Strip. Checked into Mandalay Bay hotel. Nice room, tele in bathroom.
Met my sister who has come down from Calgary.
Mandalay Bay is nice if you like massive hotels. It was clean and the rooms had everything we needed.
Sunday: Starbucks breakfast. James awake and smiling. Pedro awake but not speaking, just making rude gestures.
Pool, incredibly hot. Lazy river nice but too crowded.
You remember you are in a desert as soon as you step outside of the hotel.
Lunch in a diner. Huge portions again.
Walked to other casinos: Luxor – impressive (though males rather distracted by bikini clad girl in lobby.) Excaliber – pretty castle outside. MGM – boys remembered rainforest cafe. Too hot to walk further.
Las Vegas seems different to when we visited in 1999. It seemed smarter then, everything looked new and people were well dressed. Also, all the food was very cheap due to hotels making their profit primarily from the casinos. This time it felt slightly old. Lots of people were very casually dressed and the food was pricey. It felt like it was trying too hard.The casinos didn’t feel excitingly low lit, they just felt dark, as if they couldn’t afford any more light bulbs.
After dinner, drove to Bellagio. Amazing lobby, like a giant garden. Watched fountain/music display.
Monday: Coffee and donuts in room. Swam, chatted, relaxed.
Drove to Venetian to pick up theatre tickets. Ate in their Italian restaurant (waiters were arguing.)
Saw gondoliers and giant toffee apples.
Went to Phantom of Opera show. Nearly late because traffic was so bad. Show was short but good scenery and singing.
Drove home past erupting volcano and fountain display.
To date, seen 4 brides, 2 Elvis’, 2 show girls in a car park.
Tuesday: Donuts and coffee.
Packed.
Swam and sunbathed.
Drove to airport, which is right at the end of The Strip, so very easy.
Nine and a half hour flight home. Ugh.
xxxxxxxxxx
Please note: Some (one) names changed to protect the identity of persons involved. (I do not know why their identity needs protecting and maybe should be worried……)
Anne – I like it. A lot. Poppy
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