Wednesday 26 June 2019

What Do I Wish Others Understood about the After Effects of Brain Surgery?

1. That my thought process takes longer. To process thoughts, to say things. 3 years later and I can still be talking to someone and only understand something they said fully a few seconds or minutes later!  (This is without my surgery touching near any of the speech areas of the brain.)

2. I cannot always instantly say a correct response. e.g. someone might say ‘Hello’ as they pass me as I walk the dog, yet I reply ‘Yes’

Life after a Brain Tumour... / /

3. I randomly say wrong words. Often it is of something I am looking at, or a similar item (such as a washing machine and dishwasher) but sometimes it is fully random, and awkward!

4. My issues are not just ‘normal’ aging. Please do not say it is. I don’t know any other 45 year olds who struggle as I do, saying incorrect words or phrases more than their parents!

5. My memory struggles at times. I often only recall having read something previously a few minutes into reading it again, sometimes I forget entirely. I have a really hard time remembering things from around the time of my surgery.

6. When I am tired, all my side effects worsen, I start to wobble again, feel uncoordinated, say the wrong words, not be able to find words, feel blank or just cry from exhaustion. I struggle with the frustration alone, and at the back of my mind there is always the worry that things are getting worse again...

Life after a Brain Tumour... / /

7. I worry about head pains (of which there are many) and like many others who have survived a Brain Tumour also have health anxiety. As already I have had experience with being severely ill and Dr’s telling me I was fine and imagining it…

8. The fatigue can be insane when I am tired. I had fatigue before when it felt like my body was exhausted, this is different - it feels like your brain has forgotten how to work as well. Sleep is the only option at this point.

9. That I know I keep going on about the symptoms and side effects, as they often feel constant and wrong. It’s hard to ignore them. (I wrote about the side effects here and here)

10. I need reminding and reassuring these side effects are OK. Yes, I often forget I have had this same pain every so often since surgery. I have to think back and remember a specific incident that I had several months earlier. E.g. I remember thinking the same last summer when I walked the dog when it was hot, or at the beach I went to 2 years ago. Please help me by reminding me of actual incidents and not just saying 'You're fine'.
11. I cannot deal with conflict or too many emotions. If family are arguing, then I just switch off. Same as I cannot think clearly if shocked or surprised by something. I literally feel blank. And cry!

12. I cannot manage too much stimulation, be it from lights, noise, movement or stresses. With this I often cannot keep talking on top as it’s the final amount to cause overload. I am not being grumpy.

13. I often crave peace. To listen to birds singing or waves crashing…and nothing else!

14. Also, people talking are worse than, even loud, music. A song is somehow one sound in my head, each voice a single thing, so a room full of people talking feels like overload and my head cannot cope any longer.

Life after a Brain Tumour... / /

15. Some days are easier than others. Some I can get to a gig and be listening to loud music all evening. The next I can’t stand being in a small room of people or hearing a child screaming next door.

16. Too much of anything almost always leads to a day of fatigue after. I am not just being lazy.

17. I find it hard when I get tired as I can go from tired to exhausted far too quickly. Waking takes me far too long, It's almost always like I have been woken from a deep sleep.

Life after a Brain Tumour... / /

18. I still struggle with my spacial awareness and movement. It is worse when I am tired, but even walking with other people going in the other direction towards me can be hard. I don’t feel I can move out the way quickly and that I walk wobbly when I do.

19. I often feel that I am wobbly and slightly dizzy. But it's inside and no one else can see.

20. I cannot multi task. I cannot cook dinner and talk, or do any task and do something else. It just doesn't happen any more.

21. My eyes have never been right since before surgery. I struggle to read books- something I used to love. I don't know if the tumour or the surgery caused issues or not, (according to the optometrists my eyes work fine 😑) but it's another feeling that I am not the same as 'before'.

22. Likewise with my hand control, my fingers curl and my hand is weak. I struggle to do some basic tasks, let alone the more complicated ones. It has stopped me doing hobbies I used to enjoy.

23. I get frustrated with dropping things, my clumsiness, my spelling, my typing, my speech, my constantly getting things wrong. Please don't belittle me by saying they don't matter. They do. They are frustrating!

Life after a Brain Tumour... / /

24. I am still getting over the shock of surgery. My skull being opened. I read something a while ago about brain injury causing an injured spirit and it hit me so much I just cried with reality. My soul still needs to take time to heal.

Life after a Brain Tumour... / /

25. I have not fully accepted that the 'old me' has changed, and am still getting used to the 'new me'. I try and focus on the positive aspects and all the lessons it has taught me and part of me is certainly happier with the new version. But sometimes I just wish I could have some of the old parts back too...


1 comment:

  1. This article is very touching, especially when my son is going through the same things. Prayer brings peace, so I pray constantly.