This article is aimed at people who, like me, prefer life to be easy and who own a dominant, intelligent dog. It is possible to train a dog to complete obedience (I know, I went to the classes and watched other people) but it takes either a lot of time or a degree of cruelty. If you are someone who always revised for exams when you were at school, (and probably weren’t the middle child in a family) then this article is not for you.
My qualification for writing this article is that I grew up with a Border Collie dog and I now own a German Shepherd dog, and sometimes we manage to fool complete strangers into commenting that she is “very obedient”. Both the dog and I know that this is not true, but we work together to give a good impression. I also have raised two boys. Apart from the chewing furniture part, I think most of the advice probably applies to parenting boys too.
My main suggestion is that you let the dog train you. She will try to do this any way, and it’s much easier if you just give in. The trick is to pretend that you are slightly dumb (not difficult in some cases) and only learn the things that you want to learn. Your dog will go to great lengths to teach you. So, when my dog wants to come inside, she barks. I do not want her to bark and therefore I do not respond to this. After a while, the dog will realise that I am too stupid to understand her bark, so will stop. When she is sitting quietly by the door, I open it. She will then train me to repeat this action by sitting next to the door whenever she wants to come in.
The same principle works with sticks. If my dog tries to train me to throw a stick by bringing it near enough for me to reach and then running away with it, I ignore her. After a while, she realises that I am too stupid to play the ‘chase you round the garden trying to get the stick’ game and so she will sit next to it. When she sits next to the stick and waits, I pick it up and throw it. She then knows that she has trained me to do this and when she wants the stick thrown, she will sit patiently next to it and and wait for me to respond.
I also did this when going for walks on the lead. When she pulled me, I refused to ‘learn’ that this meant “go forwards” and I stood still. When she was waiting next to me, I moved forward. She soon realised that I was ‘unable’ to walk while she was pulling and would only move forwards if I was leading.
Dogs chase things. It is very difficult to stop them. We live on farm land and when I first got my dog, the farmer suggested that I put her in with a ewe. A dog who has been tossed by a ewe does not chase sheep. (I think this is how farmers train their dogs.) I was not prepared to risk broken bones and pain for my puppy, so I decided to not do this. I am now very careful to ensure that she is always on the lead near farm animals. She is pretty good as she has regularly walked with me through fields of animals, but I do not trust her and so keep her on the lead.
I did however follow the farmer’s advice with our cats. I allowed our puppy to experience first hand what an adult cat is capable of. She acquired a sore nose and the understanding that cats do not like to be chased. Now, when I introduce kittens to her, she is always very submissive and polite (I think she is not entirely sure if they are bigger than her.)
You also need to be aware of the dog’s innate needs. When a dog is young she will go through a teething period, just like a young child. She will need to chew something to stop her jaws aching. If you do not provide something, she will chew your furniture, shoes and bags. Give her something she is allowed to chew on. I find those raw hide chews are good, though you need to keep an eye on them so they don’t choke if they pull bits off.
Puppies have small bladders. They need to be given a place to wee. Do be careful though. I know someone who trained their dog to toilet on newspaper. Then one day, when having breakfast, he went to answer the door. When he returned, his newspaper on the breakfast table had a poop on it! If you train an intelligent dog to do something, they will learn it well. ‘Unlearning’ is pretty difficult.
Big dogs need a fair amount of exercise. If you are not prepared to do this, don’t get a large dog. You do not need to do as much exercise yourself (though it might not be a bad idea in some cases.) You can throw sticks for them to fetch, either up a hill or into water so they have to swim to retrieve it. Most intelligent dogs were bred to be working dogs. They therefore need to ‘work’. No, you don’t need to buy a flock of sheep, but you do need to provide some stimulation. Hide things for them to find, take them on long walks, throw sticks in places that are difficult to reach. You can buy a toy that holds dog biscuits which are awkward for them to get out. A bored dog will find their own amusement and that is generally not good.
Have very few rules and then stick to them rigidly. There are some rooms in my house which my dogs are not allowed in. Ever. Not even a foot. If they start to come in, I say no in a ‘barky’ voice (they are dogs, they understand tone better than words.) I do not shut the doors, I do not put up a fence, they just know that they are not allowed in those rooms. Dogs understand territory. My dog gets very cross when my husband goes into those rooms, as she considers herself far above him in the pecking order, but she will merely sit at the door and swear at him, she knows that she cannot come in.
The only time she ever broke this rule was after I came home after surgery and stayed in bed for a few days and she sneaked upstairs to see if I was there. I had never realised before that a dog can tiptoe! She looked so guilty when she was spotted that she practically leaped down the stairs.
Dogs generally have very good hearing. You do not need to shout. I never understand why so many owners yell at their dogs. If you say something and your dog ignores you, it is not because she has not heard! If you say something many times, you are teaching your dog that she does not need to obey you until you have said it at least six times. Say it once. If your dog ignores you, get up and leave. Your dog is much too nosey/bossy to let you leave without her. When she follows you, take her back and tell her again, once. If you call her when you are out and she does not return, then walk away. Do not keep calling. Your dog will not let you get lost, she will come when you start to leave.
Do not give ‘mixed messages’. If you feed your dog when you are eating, you cannot then expect her to know that she cannot always help herself from your plate/table. If you are happy sharing food, then fine. If not, then only ever feed your dog in her own bowl in a specific place. As I said before, dogs understand territory, we just need to be consistent. If she even puts her nose up to the table top, tell her “No,” not even ‘nearly’ is allowed.
An intelligent dog will have opinions and there is little we can do to change those. My daughter has a friend who my dog hates. He seems a perfectly nice person but she barks and snarls whenever he visits. I do not know why (but am beginning to be a little suspicious of him myself now.)
My dog also hates pigeons. She also hates the other dog who appears every evening at the dark glass door (she has never really got the hang of reflections.)
As for hitting your dog: don’t. It wont achieve anything good. I do sometimes shout abuse at my dog (I am only human and sometimes I get angry.) She just looks at me with her superior “she has lost it” expression. (As I said before, it is a lot like parenting boys. Dogs cannot roll their eyes.) She certainly does not learn anything useful. I do not however hit my dog. I cannot see how inflicting pain will achieve anything. My vet once told me to smack my Labrador with a rolled up newspaper, saying it would create a loud noise but not hurt her. I did. It did not change her behaviour. Mind you, she is a Labrador. She does not have opinions. I love her dearly but am suspicious that the only thought that ever enters her head is, “Can I eat that?”
Usually I am very grateful for my German Shepherd’s opinions. When we are walking in a secluded place and a man approaches and my dog eyes him suspiciously and growls very quietly so he gives us a lot of space, I am pleased. When travellers come to try and sell me a new driveway and my dog snarls at them so they head back to their van before they have even finished speaking, I am pleased. There are also random people who my dog is always delighted to meet and she dances around them in joy. I am beginning to think they must be very nice people.
My dog is completely sure of her superiority. So when my mother took her for a walk and could not work out how to attach the harness properly, my dog walked patiently next to her, giving her many looks to convey, “You did this wrong so I will walk very close to you in case it falls off.” She gets very angry when wild ducks come to visit our pond and comes to tell me. She is also not too happy when we have bulls in the field next door and spends a lot of time checking they stay on their side of the hedge.
If you own a dog with opinions, you will have a faithful friend who is brilliant company and very forgiving of all your mistakes (and they will notice every single one.)
Sometimes my family complain that I love my dog more than I love them. Let’s just hope I never have to choose between them………
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xxxxxxx
If you enjoyed this, you will love my new book: The Sarcastic Mother’s Holiday Diary.
I have always written a diary on holiday, so last Christmas, I decided to find all my old diaries and blogs, and make a book for my children. However, several other people also asked for a copy, so I have written a public version – it’s available on Amazon and has been described as “The Durrells meet Bill Bryson”!
Why not buy a copy today? I think it will make you laugh.
Anne E. Thompson has written several novels and non-fiction books. You can find her work in bookshops and Amazon. Why not sign up to follow her blog today? anneethompson.com
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?
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 parent’s 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. 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
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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.
This article is aimed at people who, like me, prefer life to be easy and who own a dominant, intelligent dog. It is possible to train a dog to complete obedience (I know, I went to the classes and watched other people) but it takes either a lot of time or a degree of cruelty. If you are someone who always revised for exams when you were at school, (and probably weren’t the middle child in a family) then this article is not for you.
Anne E Thompson 