Happy new....you.
Happy January, happy new year, happy everything. So many walks of life to include that I would take my whole blog just listing them so... just be HAPPY!
Happy is something I want to touch on. It's actually 8 years this february since they went all sous chef on my brain and skull. I cannot believe it. And I know I say that alot, but I'm allowed because I'm living it! ha! living it fast and slow at the same time! It feels like yesterday watching them slip drugs into a vein to send Jude to sleep only to awaken Jude with differences. But yet it feels like so much has happened since then that it should be longer than 8 years, but also that some things are taking forever to improve or become normal that it feels like a lifetime!
So mixed emotions. All I know is that Im HAPPY that I had it done.. because I would be dead! hahah No really. That has to be an up right? Its not good.. not a surgery I recommend (are there any??) but it did it's job and now we live with the consequences of two pairs of hands meddling around inside my head!
So where am I?
Sadly.. my tests for NF2 came back positive within my tumour, so after negative bloods, they can't be sure that wasn't a false negative. So we watch and wait. Because I don't have kids and won't be, and they think its the random and not the hereditary form, it's just me affected so it just means keeping an eye on any lumps and bumps and potential new tumours. But I have an Mri yearly anyway so that covers that. The saving grace being that if I do develop another AN then we're another 8years on from my original surgery so treatments have improved and changed :)
Im still waiting to find out about radiotherapy. Been a long wait, but the tumour is growing but it has space (where the other was removed and the brain didn't ping back in to place)
to grow into before it damages me. So regular MRI's watch that.
I suffer with balance issues, hearing, tinnitus, I can't see quite right out of my affected eye, though the optician will tell you it's fine. I get irrational for no reason!? (not cos I'm a girl but purely since my op) I get some pretty bad headaches and pain in my teeth that all renders me useles. I get tired very easily and it doesnt take much to make my head hurt. but I do what I can then stop.
8 years on. I see so many more people coming out of the woodwork to talk about it than before. Back when I was diagnosed it was email between me and another chap who had written a blog 10 years previous. Now.. with digital media being so influential people can connect everywhere. I love how invested people are in helping fellow sufferers and people in general who are going through something.
Having an acoustic neuroma is not limited to the "AN club". The things it teaches you are invaluable. They are little side bonuses, when the fog clears that is and you can see them. But being able to empathise and understand how other people might be feeling is one of the best things that came out of this for me. It improved my nursing no end. Knowing that the "wall" of fatigue is real and that it IS insurmountable for a bit until energy is restored was a secret only people who have HIT it would know. And now I know!
Being able to appreciate the people around you, to being able to try and find ways to stay healthy and fill your body with good things.
All these little side effects of a trauma and an ongoing illness however it affects you, are treasures that you were given the chance to hold onto. It's so lovely to see people sharing them.
Ahh... so I'm getting sentimental. I think I'm allowed. This past section of time has seen so much change for me. Morris threw me a curve ball. On a life journey that saw me travelling to the less developed parts of the world, nursing and learning other cultures, a blob of unwanted cells saw that ended. Suddenly it was deafness, ringing in the ear, unbalance, confusion, lack of cognition, fatigue, headaches. blah! It's been a huge mountain to climb to accept that I couldn't work my job as a nurse for now. That I needed to rest my brain and manage my lifestyle. Kitesurfing, nursing shifts, responsibility, living alone, driving, going mad at the gym, not eating well... they all added to a big bang where my body just gave in.
So changes were afoot, a new slower paced life. I couldn't recommend it MORE. If you possibly can take a little time back. I know money and kids and demands don't always allow, but try somewhere to build in a rest space for yourself. Your head will thankyou for it.
So to close, at 8 years, its not the 8 I planned, but it's 8 I have actually had and now.. well there's alot of bumps along the way but I'm happy with how Im handling the head stuff!!
Thanks in "huge" part to the support of my community of friends both online ond off .
Jude x