Pre-diagnosis, on top of constant headaches, me and my wife, Sharon, noticed changes to my speech and cognition.
For instance, I’d be typing on the computer, look up and what I’d written weren’t proper words. Usually the computer will say ‘is this what you mean?’, but sometimes I was so far away it couldn’t suggest anything.
I also found I’d forget people’s names. I know we all do this sometimes, but this was people I’d never forgotten before, like colleagues in my team. It was also taking me longer to write sentences and emails because I couldn’t remember the words I wanted.
This was before I knew anything about brain tumours and what to look out for. I was 39 and didn’t know what was happening. So I was visiting the GP a fair bit.
Then, the Christmas before my diagnosis, we were playing a game where you have to describe something, like a person or place. I couldn’t remember the word, even if I could picture it.
At the time I thought maybe it was just stress or tiredness. But now I know it was another sign that I was losing words and knowledge.
Say what you see
After six weeks of these symptoms, in 2012 I had an MRI and straight away they could see I had a brain tumour.
I was transferred to Coventry Hospital and they debulked the tumour. A few days later, I was told I had a grade 4 glioblastoma the size of a golf ball.
I had an assessment with an occupational therapist, which included looking at pictures of animals and saying what I could see – such as a dog, a cat, a lion. This was to mark the starting point of where I was with the initial side-effects, and it revealed that I had dysphasia (partial loss of my ability to produce language, spoken and written) caused by the tumour and compounded by the surgery to debulk it.
The hospital said my current degree of cognitive problems were likely to improve as the brain can recover slightly, but they referred me to speech therapy for one year to try and further improve my memory, speech and cognition. This was to help me link what I wanted to say into words and sentences, verbally and in writing.
It was really worthwhile and I did start to improve, but it left me exhausted, especially while still recovering from surgery and chemotherapy.
My wife, Sharon, and son, Elliot, have been brilliant too. Elliot was seven when I was diagnosed and he used to do wonderful things to help me.
Before I was diagnosed, Sharon and I had been reading to Elliot at night. But, after my diagnosis, I’d read to him and struggle with some sentences or bigger words. So I just started asking him “what’s this word, Elliot?” As soon as he told me what the word was, I could say it and explain what it meant. Elliot was that age where he could say the word, but didn’t always know what it meant. So I could help him if he didn’t know.
That was a great way to get normality back and allow me to still do things with him. And it was also a good way to keep pushing my brain to remember.
The speech therapy helped my brain recover a bit after all that trauma. But it’s an ongoing effort to keep it in a good place. So, I had to think of what else I could do to get to the best possible point.
I found talking to people face-to-face much easier, with more non-verbal cues and being able to do circumlocution to find words, much like the game we played at Christmas. With email especially it can become very difficult, as you can’t help them understand what you’re trying to say.
I started pushing myself to keep speaking to my friends and, if I got something wrong and had to ask for help, I didn’t feel embarrassed.
That’s played a big part in being able to continue talking to people, I got more confident. When I went down the town that confidence helped me speak to people there, not letting my difficulties stop me.
I also found predictive text and virtual assistants (like Alexa) helpful. When I was writing on my tablet, predictive text could help me find a word. The only problem with this was that I spell phonetically, but unfortunately English isn’t phonetic, and predictive text doesn’t work if you spell the word too wrong.
Alexa helped in this case. While I was writing, if I forgot how to spell something I could ask Alexa. Though sometimes, because I’m frustrated and tired, I do forget her name. But I try to just smile and laugh, because ultimately stress doesn’t help me remember.
Going back to work
I wanted to continue to get normality back and for me that was by trying to go back to work.
Work really supported me and let me to do it in slow stages. They also put things in place to support me, like an external expert. They gave me a Dictaphone so I could play back conversations, or ask people what something meant. This helped me understand both normal language and ‘work words’.
And I had software I could speak to so, even if I couldn’t get the word right, it would pop up options of what it thought I was trying to say (like the predictive text). It would then learn what the right word was. This meant that over time it became quicker and easier for me to write short emails. But it did take a lot of time to learn how to use and I couldn’t always remember what I needed to do.
Although all this gave me a real fighting chance to see if I could get back to work, in early 2015, it was still very difficult and it became apparent it wasn’t going to be possible.
I found it difficult to get my day-to-day language back, so on top of that, trying to work and remember work language too was really hard.
I was also having chemotherapy every four weeks and was struggling with chronic fatigue, which made remembering even more difficult. So we wondered whether it would be better to focus on my family and having quality time with them. So I decided to leave work.
That’s taken a bit of time for me to come to terms with. But I know it was the right choice.
I still try to improve my speech but I don’t use what I had at work. Now, emails can take me a bit of time, but if I get something wrong or it takes me longer, I know it’s not the end of the world.
Finding support from others
I was still struggling with fatigue, which a lot of people have during treatment or early diagnosis. But I joined a support group and learnt that you can take steps to manage this yourself.
It helps to partition the day into high energy, medium energy and low energy activities and spread those throughout the day or week.
Once you have an idea of the amount of energy something might take and if you have enough, then you have a baseline of how to plan your day or week.
But you should only plan about 75% of your energy. That way if something comes up in the day, or you’ve forgotten something, you’re more likely to be able to deal with it.
You can also plan around any times of day you have more energy. For instance, if you lose energy in the afternoon, and things are a lot harder, then you have the option of giving a better time. In the beginning I wasn’t thinking about when would be best to do certain things, relative to what else I had on during the day, what chemotherapy I’ve had recently, and it made things difficult. Now I know I’m better in the mornings and find face-to-face easier than talking on the phone or by email, so I’m using this to plan my days.
Learning how to cope
I’ve also found support by trying to help others. I do a few speeches for The Charity and, initially, I felt pressure to speak perfectly and know what to say. But now if I forget a word I ask the group to help instead. I make it fun and if someone helps me and gets it right I say “that’s a point to you” and eventually someone ‘wins’.
Another technique I use is asking people to give me the first letter of a word. Often, if I have the first letter, then I can remember the word and I’m still using my brain to remember.
Although I do find sometimes I forget the word quickly, because my short term memory is affected.
But I’ve learnt it’s important to support the people you’re talking to. Some people don’t know if it’s better to help and suggest words or if they’ll make it worse. So the earlier you can tell them that you’re happy for their support, the better.
I’ve also learnt, through doing these speeches for The Charity, that not only can I help others with similar problems to me, but it also really helps me too.
So if anyone is thinking of supporting The Charity, it’s not just a one way thing. I’m doing something I wouldn’t be otherwise, and trying to push my brain a bit further than I would at home is doing me good.
It’s also given me confidence. It’s not just about getting it right, you don’t have to know it all. It’s just about doing something – and that can really help you and others.
The last important thing I learnt is just to look forward. It’s important to accept that things might not go back to how they were. You have to go through that acceptance and think ‘what am I going to do about it?’. And the only thing you can do is move forward. It can be frustrating and disheartening, you might want to give up. But, you just have to crack on as best you can.
So be positive. Keep smiling. I do that with everything.
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