This is an honest account of the things I wish I had known when I had a brain tumor. It is necessarily subjective. You might disagree with some parts, but I hope you will find some of it 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 can sound 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 it 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 tumors 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 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 tumor, 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 as many different types of brain tumors 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. Most of it was very scary. “Sudden instant death” seemed to be a feature of my particular tumor (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 doctor 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 doctor to write the referral, 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 realize something was wrong and actually not knowing can be more worrisome 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 of which they are unsure.
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 tumors 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 tumor 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 tumor, 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 tumor, 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 from your surgeon. If they intend to just observe the tumor, 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 tumor?” 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. This is normal and not a massive insult to your initial surgeon. I read on the chatroom about a surgeon who sounded qualified 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 tumor 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 tumor 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.
1) Occupy your mind. I found that I could not stop thinking about the fact that I had a brain tumor 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 was also 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.
2) If possible, try to 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 challenge yourself to do so.
3) 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, so allow yourself some treats.
Try not to face things you do not need to. Sometimes our thoughts run away with us and we imagine the worst, 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.
If You Are Having Brain Surgery
Depending on the type of tumor, surgery might happen very quickly or not at all. I was told that my tumor 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 theirs 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 tumor 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.
Soon after arriving at hospital the day before surgery, a very nice young doctor came to attach stickers to my head. They were about 2 cm in 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 some hair would be shaved, but I had assumed I would be asleep. I also found being drawn on weirdly “dehumanizing.” 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 sent 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. 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 – if 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 at the time. 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 was concerned 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, 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 things. 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.
Depending on your type of surgery, you may not be allowed to drive afterwards. I had a craniotomy and the rules at the moment are that I cannot drive for at least six months. However, the rules seem to change frequently. Although you may be told you cannot drive for a certain period, it may turn out to be longer.
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 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 tumor or because someone who 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.
Editor’s note: This post is based off an individual’s experience and should not be taken as medical advice. Please see a medical professional before starting or stopping any medication.
Follow this journey on Anne Thompson
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