by Anne E Thompson
Having a craniotomy is scary, and for most people, they only have one, so it’s all a bit unknown. This is my experience of recovery. It is personal, everyone heals differently, and I think that age and general health probably have a large bearing on the time taken to recover. But I hope that my experience will be helpful. I am not a brave person, but I survived and actually learnt a lot. Don’t be frightened – if I can do it, so can you!
For the first few weeks after my op, I was fuzzy. Very fuzzy. A sort of “I have drunk too many glasses of wine and can’t quite concentrate” sort of fuzzy. I could speak and behave relatively normally, so people didn’t really notice, but processing information was an effort. It wasn’t unpleasant actually, I just didn’t get much done. That was July 2014.
When the fuzz finally cleared (after about three weeks) I was mainly tired. I also found that I became anxious very easily and was very emotional. Anything that would normally have made me think, “Aw, that’s sad” now made me cry. Sometimes it was hard to stop crying. Close friends and family became accustomed to seeing me with a red nose and I carried tissues wherever I went. Initially, I found this intensely embarrassing. Then I began to notice that actually, no one minded and many people actual preferred the ‘weak’ me. There is a lot of competition in life, a lot of keeping up of appearances. It is a strain on everyone. Most people were very comfortable with the scatty red nosed lady who now attended things. I became closer friends with a lot of people. Mostly, people are nice.
After about six months, I began to feel that I was finally ‘getting better’. My hair had grown back (my surgeon was a rubbish hair stylist – more a ‘shave down one side’ than a style) and I could stop wearing the annoying scarves over my bald patch. I still got tired very easily, especially if I was doing ‘brain stuff’. So I could only read, write, hold a conversation, for a limited amount of time before I felt exhausted. I wasn’t physically tired though and a walk across the fields or pottering around in the garden, gave my brain enough rest to then start working for another stint. It was important to recognise what was tired (my brain) and what was fine (my body) so I could still do things, just mentally demanding things needed to be paced correctly. It is important to do as much as we can, partly because it’s not fair on other people to be more of a burden than we need to be, partly because unless we try to do things, we won’t know if we can.
I also still had memory issues. That Christmas, I did cook the normal big Christmas turkey dinner with all the trimmings. However, it only happened because my son stood next to me, reminding me of what I was doing. He would say things like, “There’s a saucepan of water boiling, did you mean to put those sprouts into it? When did you last check the sausages? Are those breadcrumbs for the stuffing?” He didn’t actually need to DO anything, but he did the thinking bits for me. Without him, I would happily have boiled saucepans of water while the vegetables sat on the side. I think being aware of the stage of recovery is important, asking for the help that is needed while doing as much as possible yourself. Doing things made me feel more confident; having help, meant that I could actually achieve what I wanted to.
After about nine months, I felt as if I had improved as much as I was going to, though I still got in muddles easily. Previously, I had been a primary school teacher. When teaching a class – sometimes of thirty children – I knew exactly where every child was in the room and roughly what they were doing. I knew which ones could work independently and which ones I needed to check on regularly to keep them on track. Any change in noise or movement, I noticed at once and could stop distractions before they happened. I could respond to questions, accidents, behavioural problems, as they happened, whilst maintaining the general calm of the classroom. All this was a lot of information to hold in my brain. Even when I felt better, I was not confident that I could juggle so much all at once.
I think the key word here is ‘confidence’. It is possible that, had I needed to, I would have coped perfectly well. However, I just wasn’t sure that I would notice if a child slipped out of the room. If there HAD been an accident, even if it wasn’t my fault, I would have worried that I missed something that could have avoided it. I therefore decided I would not return to teaching, not yet. However, I was bored. A friend suggested that I started writing a blog and this led to writing longer articles and then novels. I still got mentally exhausted and had to take regular breaks, but I felt that I was achieving something. Again, I think only you know what you feel able to cope with. But if you cannot do what you did before, do something different. It is all about taking small steps on the road to recovery – and recovering from brain surgery is a very very long road. Brains heal MUCH slower than broken bones.
The following August, thirteen months post op, we went to Malta. My boys had bought the Game of Thrones board game. This is quite fun, not as rude as the films, and a good ‘family bonding’ activity. However, it also has lots of rules. Millions of them. I found that I still kept forgetting them and this was extremely frustrating. I became very angry with myself and very emotional (the whole crying thing was better by this time but still not as calm as I would have liked.)I am so not someone who cries over board games, so that added another level of frustration. I just could not hold enough information in my head.
I’m not sure that there’s a solution to this one. There are things that are simply too difficult, which would not have been a problem prior to surgery. I rather spoilt the game by bursting into tears. It would have been better to have laughed and asked for help. I think a lot of recovery is to do with being aware of when to stop, to know what will stretch and improve us and what will simply frustrate us. The thing is, no one else will know what is hard for us. If we had a broken leg, people would see the limp and walk slower for us, they wouldn’t expect us to climb a mountain. Once your hair has grown back, everyone will assume that because you look ‘normal’, you are completely back to where you were. If you’re not, it is up to you to tell them. It is okay to say, “I cannot do that anymore.”
Eighteen months post op, I was cooking for forty people at a lunch club for the elderly (which was fine unless someone tried to have a conversation at the same time and then things went a little awry – but no one noticed). I was writing every morning. I was raising poultry and running the house. I seemed completely recovered. However, I still got mentally tired easily, I still forgot names and dates and lost track of time. I was chatting about this to a friend who had recovered from cancer after a big op and chemo. She also still gets tired, but she also pointed out that I was eighteen months older – if you include the five years of headache beforehand, I was actually six years older than when I was well. As we get older, things stop working perfectly, especially our brains. A lot of women my age forget things and get tired. There is a danger that we blame everything on our surgery. We do not know how we would be if we hadn’t been ill and had major surgery. In many ways, it’s not worth worrying about. We are where we are.
What’s important is that we recognise where we are, know that we still have a lot to offer – even if it’s different to what we were able to give when we were younger. We have more understanding for people who are older, in pain, finding life difficult. We have had to learn patience, that we are not invincible, we have faced death and lived to tell the tale. Maybe we are better people than we were before.
When I had written this, I was chatting to my son about it, telling him what I had written. During the conversation, I made the point that if I could go back six years, to before I was ever diagnosed with a brain tumour and was given the choice, either to have the tumour and craniotomy as happened, or to never have had either, I would choose the path I had been given. True, it was painful and emotionally difficult. But the things that I have learned about myself, the new way that I have learned to trust God, the knowledge that I have gained about other people, what it means to suffer and survive, new strengths that I never knew that I had – it has been worth it.
Brain surgery changes us. However, we would change anyway. Never forget that you are a valuable person, what you can offer now may not be the same as you could offer before being ill, you are different. Perhaps you are better.
Thank you for reading.
PS. I found that the communication skills necessary to teach, transpose rather well to writing. I have now, three years on, written several books. They are published as both paperbacks and on Kindle. I write as Anne E Thompson.
One of my novels, Counting Stars by Anne E Thompson, was written a few months after surgery. One of the characters depicts the muddle of feelings I had after my craniotomy. It is an exciting novel about a family in the world just around the corner. Much of society is unchanged, but there are some key developments – not all of them good. Why not give yourself a break and take a look?
The link is below:
For UK readers:
For US readers: