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I must begin by stating that I merely have an Honours degree in Education and an outdated first aid certificate, so nothing I say should be taken as having any medical knowledge at all.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.
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.
Love, Anne x
Thank you for reading
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