Sunday, 1 July 2018

Today, I'm wearing blue for BANA

BANA is the acronym for the charity that I turned to when I had the diagnosis of the brain tumour. British Acoustic Neuroma Association. Well, today is the day that they ask us to 'Wear Blue for BANA' to raise awareness. It occurred to me that my blog  might help!


Something I don't like to do...selfies, mirrors....but it's for a good cause. No enlarging, please, I think you'll find I'm large enough. (More interesting: the artwork on the wall is by Patsy Paterno, a Desker. I bought it from her just after the surgery - it says 'every day is a journey' and it is so true.)

BANA have a support group of fellow Acoustic Neuroma patients. We refer to them as ANs. Bearing in mind that no tumour is the same for anyone, they are called Acoustic Neuromas because they rise from the hearing tubes, usually attach themselves to the facial nerve and erm, grow. They are benign. That is to say, they are not a cancer. They are life threatening - after all, they grow in your brain, taking up room that isn't actually there, causing the brain to be squashed against the brain stem. Slowly, functions go haywire. So..you have to have it removed, one way or another. As you know, I had surgery. I joined the BANA group on Facebook and the depth of knowledge and the 'after surgery' stories frightened me to death. I very quickly made up my mind to recover and be well, and I'm very grateful that for once, I had the will power and great fortune to be able to do that.
I have side effects, but no symptoms, I am not ill. The palsy on my right side is due to the trauma the facial nerve suffered. It has improved vastly, and it might continue to do so. It would be very nice not to have half a numb face. But it is easier to live with than a tumour in your head! The palsy means though, that drinking from a can, bottle or sports cap is a very messy dribbly affair. When I come to your house, please can I have porcelain for my coffee or tea cup and a nice thin glass for other drinks? They are no longer a problem. The thicker the rim, the more I dribble. But of course, there's a way round everything. And there's always someone to help you research those ways...……

Everything looks wonky. No idea why. 




18 comments:

Helen said...

I hope your post raises lots of awareness. So pleased that you have recovered to the extent you have, and I hope you improve further... till then enjoy the gin through a straw and you would be very welcome here to drink from a thin china cup! just don't expect to be able to sit down anywhere.......

voodoo vixen said...

I love you in blue, it suits you and you have come so far in your journey, I admire your strength. Have you seen those fabby steel straws? They look fabbydoozy and help the environment at the same time. I got a set on Amazon and love them, great for exercising your mouth area muscles as you get older so it could help with your facial muscles too?

Sue said...

Hi Julia, Well done you for putting your selfie up, even though you don't like showing yourself off. Blue suits you.

Make sure you alwayds have straws, oh and gin, at hand:)

Hope you have a nice day. Sue

Shaz Brooks said...

Hi Julia, that's a smashing selfie, but I'm with you on not liking doing them. Takes me a couple of dozen before I find one that's barely acceptable,lol. So good to see how far you've come, and you are right, a determination to get better is key. Nerve trauma is a bugger though. I still have it, and reckon now I always will, down my left leg, and from my bladder. But still, I'm here, and people manage with far worse issues.
Lots of love & hugs, Shaz XxX

Christine said...

Interesting post and a gorgeous piccy. You have some so far along the road to good health, we all love you more for it.
Blue suits you well.
That picture looks ok to me ..... but then I have a wonky eye!!
xxxx

Kyla said...

looking fabulous hun and I am always amazed at your resilience and determination-the positive attitude has paid off for your recovery I am sure.

Like the idea of porcelain cups-little finger out at a jaunty angle like its posh tea-but really we all know its G&T :-)

Kyla

Bleubeard and Elizabeth said...

You are the strongest and most resilient person I know. I am SO sure this will help raise awareness to some, as I was fortunate enough to look the condition up when you were first diagnosed. From your adorable selfie, I can tell you are already far better than you were right after surgery.

I was going to suggest I would offer you a straw even before I saw the photo of you and Jan. I keep them because I have practically no neck and can only lean my head back so far before I get a glass full of liquid in my face.

SO glad you used your blog to raise awareness today. After all, many of us read your blog, they just don't comment. You make an impact wherever you go, dear Julia.

Elizabeth said...

Hi Julia, this post can only help to raise awareness of a condition that most of us would probably never heard of if it wasn't for your experience. You are an inspiration and I'm not at all surprised that you have made such a good recovery - and I have no doubt at all that you will continue to improve as time goes on - especially with the Research & Development Jan is undertaking with you :) Hugs, Elizabeth xx

Monica said...

Better Selfie than I have ever taken. Sounds like a horrible disease and just happy to hear you are fighting fit. It is brave of you to discuss it but it is the only way you help not only yourself but others. I battle Menieres disease and have for over 40 years. talking about it is the only way to get awareness of the disease.
YOU GO GIRL
hugS
MONICA

Lunch Lady Jan said...

That's such a great layout!! And Elizabeth's suggestion that I can be your R&D gin buddy is awesome....
You were and are a fighter...stubborn too....but that's what got you through. Well done and hugs to you, my lovely bestie 💖

Tracey@Hotchpotchcreations said...

Even though i'm not a Gin person I would share one with you any day Julia.
Such a brave post but elevating to see you have come so far and shone through. A treat for us all to see.. You look FABULOUS!! Beautiful in Blue.
It's a pleasure to have found you in the land of blog.. Stay strong!!
Hugs for a great week ahead Tracey xx
P.S Always a china cup and straw awaits just for you.

Zsuzsa Karoly-Smith said...

You're right it's scary as hell, but you've made a marvellous recovery. Love the dress - I just happen to be wearing blue - then again I wear something blue 90% of the time. All the best, Julia. xx

AliWade said...

Thank you for educating me about something I had no knowledge of. Great photos. Ali x

Annie Claxton said...

Hi Jan, that's a lovely picture of you - my selfies always turn out pants. Love that top, love the layout and love the idea of a serious R&D partner who is prepared to lay herself on the line and drink gin with you :D I am sure your post will help to raise awareness of such a worthwhile cause. Have you put it on FB as well? I'd be happy to share it if so, though I am a bit a a klutz with FB so things often pass me by ... xxx

Robyn said...

grateful you found a support group,andthat you are well! love to you Julia! Art Heals!

Neet said...

Well done Miss, I couldn't believe how much you had progressed - so good luck with further progress and if it don't happen, remember how far you have come now! We WOWY'ers are so proud of you.
Hope your post brings some/more awareness of BANA - hope I never have to join but who knows and who knows who one knows who might get help from this in the future. (read that and understand erm... sorry about the who's and where's)
Hugs, Neet xx

Catriona Mason said...

You look fab and that’s a great selfie.

Sylvia/LittleTreasures said...

Thank you for sharing this. I love this photo of you. I am so happy you have had the medical care you needed. I always wonder where do these medical issues come from....were they here when our grandparents etc were here and no one knew of why they were ill? Much progress made is good. A young gal I play Bunco with has the palsy and has made progress in 4 months or so. Don't think she has a support group, just us!!! Best Wishes.