How to Have a Brain Tumour
by Anne E Thompson
I should begin by first stating that I merely have an Honours degree in education and an outdated first aid certificate, so nothing I say should be taken as having any medical knowledge at all.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 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 don’t know 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.
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. After diagnosis, your GP will refer you to a surgeon. (By the way, surgeons are called ‘Mister”, not “Doctor” in England – unless they are very senior, when they go back to Doctor again! I have no idea why, but it’s easy to remember – if they are allowed to hold a knife, call them Mr.) You can find a good surgeon by asking for advice on online forums, find out who other people recommend, then ask your GP to refer you to that one.
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.
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.
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 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.
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 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.
I 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 – will be like a visit from the Grim Reaper! However, joking aside, it is good to prepare both ourselves and our visitors.
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 didn’t 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.
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. I have written more about how to get your licence returned in my book.
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 colloid cyst from the third ventricle (the middle of the brain.)
Whether you are reading this because you have a brain tumour 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.
Thank you for reading.
Since writing this article, I have been contacted by people who have recently been diagnosed with a brain tumour, saying that their experiences are very similar to mine – especially the first few weeks of worry. There seems to still be a lack of easily available information. I have therefore written a short book. It has extracts from my diaries, written at the time, and also all the things I learned during a seven year journey. It is available from Amazon, and I hope will be helpful. The UK link is below:
Anne E. Thompson is the author of several novels. They are available from bookshops and Amazon. More details can be found at: anneethompson.com
Thank you for reading.
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Excellent piece of writing for fellow brain tumour travellers and their loved ones to read!
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As much as I have researched my colloid cyst on the internet, this is the first time I have run across this author and article. Well done from a fellow Brit living in the United States! Practical advice provided with good humor!
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I had surgery for a colloid cyst and hydrocephalus 4 years ago. Having gone through a similar experience, I found your thoughts and advice most excellent. Nobody really knows what to expect before surgery and ultimately everyone’s experience is different, however, reading about other people’s experience has a calming effect. At least it does for me. Some people want to know as few of the details as possible. I am not one of those people.
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Interesting read. I had a posterior fossa tumor in 1968. No ct or mri in NZ at that time. My journey a little different in that respect. I am currently writing my life story for publication.
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Thanks for this my op is on 22/02/16
This helped my anxiety.
God bless you all
I do hope it all goes well Stacey. I think waiting is the worst part. Be kind to yourself. x
I too took 6 months to recover after my craniotomy for a colloid cyst. I had expected to take a year for recovery, but was back on my feet within 6 months. I was bored to tears having to stay at home for the next 6 months.
Even though you have mentioned that you are not a medical professional, a colloid cyst is “NOT” a tumor. A cyst and a tumor are completely different things, happen because of different reasons, have different treatments and prognosis.
I am interested that you say that. I heard many medical people refer to the colloid cyst as a benign tumour and my understanding is that ANY growth that is not meant to be there is a ‘tumour’. My understanding is that it is a broad term and covers many different things – much as the word “cancer” does (it can be an easily removed cancerous mole that never causes further problems or a horribly aggressive disease that changes everything.) I’m not sure if words are used differently in different countries.
Whatever the semantics, I hope no one would think I was trying to imply a colloid cyst compares in severity to some of the many malignant tumours that people cope with. I realise in comparison, my experience is tiny. However, I also think that information is hard to find, and as I said in the article, my aim was to share information and feelings that I would have loved to read when I was first diagnosed.
Many thanks for writing this piece Anne ,very helpful and full of info the doctors forget to mention
Wow I am 44 years post crani and your article and research is spot on! I wish i had known you back then. I did return to work as an ICU RN retiring after 52 years of practice.
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Thanks Donna. It does seem impossibly hard to get information when you’re initially diagnosed.