Mind over Matter - My Meningioma Journey

Spot the post-craniotomy regrowth!!!😂🧠💇🏼‍♀️

Another day pounding the lanes.👣
Today was not an easy one to go out on. There's still so much unpredictability on this journey of mine that the pull to stay home and isolate is often strong.❤️‍🩹 But off I went and I managed 5.2kms.😌

Please share my fundraiser or donate if you can. 🙏

🧠 £250 funds a day's research to further understand particular types of brain tumours.
🧠 £100 could reach 75 families through an awareness-raising HeadSmart campaign.
🧠 £25 provides essential information to someone living with a brain tumour.

So every £ counts! 115.7kms to go!!🚶‍♀️🚶‍♀️🚶‍♀️🚶‍♀️🚶‍♀️🚶‍♀️🚶‍♀️

https://bit.ly/JustGivingHollyMilne

🧠First leg of my Twilight Walk done!🧠 (Although I did walk out with my slippers on, only to realise half way down the street!🫣)
🌼4.6kms down...125.4kms to go!😬🚶‍♀️
👉Please share this all important fundraiser to help further Brain Tumour Research and improve care for all those affected. ❤️‍🩹👇

https://bit.ly/JustGivingHollyMilne

The Brain Tumour Charity

A year ago, I committed to walking 10,000 steps a day to raise money for The Brain Tumour Charity. I managed to clock 290,000 steps in the end, just short of the 310,000 target and raised £300. I was 5 weeks post-craniotomy.🧠
This year, March brings a new challenge - The Twilight Walk. I'm ashamed to say that I have really struggled to commit to this one. I've been out walking so little and have lost a lot of the motivation and positivity I felt a year ago. A long year stretches ahead and at times, I really don't know how I'm going to get through it. But I need to do this, not just for my sorry self but for all those affected by this truly devastating disease.😔🎗
So I'm going to attempt to walk 130kms throughout March to give tumours the finger! 🚶‍♀️🚶‍♀️🚶‍♀️
I'd love some friends to join me on the way, donate or share my fundraiser to help fund research and care for those not as fortunate as ourselves. ❤️‍🩹 Really, every £ counts!!!
"Sometimes you may have to fight a battle more than once to win it." ~ Margaret Thatcher

Holly's Walk for Brain Tumours Help Holly Milne raise money to support The Brain Tumour Charity

Happy 1st Craniversary to me! 🧠
A year ago, I was still in surgery - 10 hours long...
It's been a year. Naively, I thought I would have the surgery and once the tumour was removed, I'd just go back to normal. Well, I've realised 'normal' is not going to return. Who wants 'normal' anyway?!😅 Many times I've felt like the surgery was the easy part...
BUT as I start my 42nd year on this earth, I'm looking forward - not too far forward or I'll freak myself out (thinking of everything I should be doing and where I should be in my life!!🤦🏼‍♀️) Just a few forward steps at a time will do. Today was a good day and you know what? So was this day a year ago.😌🧠
Thanks for listening to me 'bang on' about this. But as the familiar saying goes, "You'll be fine, it's not brain surgery." Well it WAS brain surgery!🤣 And for all intents and purposes I AM fine! (but need a bit of 'banging on' from time to time😉).

Happy New Year all you wonderful, encouraging and supportive peeps!🧠❤️‍🩹

I have been quiet. Quiet for a lot of reasons. There's been some setbacks and I've found myself wallowing in a new place - anger! Not an emotion I am used to. I'm more of the forgive and move on type but recent events and a culmination of many years of bottling up reactions to infertility, miscarriages, emigrating, not having a career anymore and recently, people's devastating actions (when they know nothing of my life or circumstances) and between all that, this pesky hole in my brain have made me one angry mama!!😅

Oooh but it has been cathartic. I'm learning that some people require no more of my time and that's okay. I don't have to be liked by everyone. A huge step for me who has always been the eternal people pleaser! I also don't have to be nice to everyone! Shock horror?! And it's okay to feel angry at everything that's been thrown at me. It's part of the process and perhaps I'll eventually get to acceptance? But for now, I'm enjoying anger. It's long overdue.

So my take away is that anger is often frowned upon. A negative emotion. But my friends, it is oh so necessary! In order to move on, we need to shout and scream and wail! Well, that's what I'm doing! (Albeit mainly in the shower but I'm doing it!)🤫 Don't let anyone take away your anger. Work with it and through it. Tell people you're angry. They need to hear it. If it makes them uncomfortable so be it. Own it. It's yours and nothing to be ashamed of.

So I'm walking into 2023 angry but I'm sure as hell not walking out of it angry! And that's all I'm aiming for right now.🩵

And on that 'angry' note, wishing you all love, light and a kind year ahead! I think we all need it!💙

A year ago today, I was diagnosed with a 4cm Right Frontal Lobe Meningioma.❤️‍🩹🧠
That's all I have to say about today really. Inspiring words fail me.
It was a s**t day.
The End.🖤

It's been a rough month, Russ rushed off to South Africa for 2 weeks with his dad taken very ill (miraculously recovering now💜) and then we had 2 very sick kids back to back for 2 weeks.😵‍💫 Kids home for the holidays and weekends are very different to kids at home sick! Throw a mum with a hole in her brain in the mix and it's fun times!🤯

Today, is my first day alone and although there are a myriad of things I need to catch up on, I treated myself to a long bath. There is only so many times one can be vomited, sneezed and coughed on before one feels the need to soak!!😅 Just when I thought I had nothing nice to pamper myself with, I remembered I had a treasure trove of goodies given to me by some very special peeps when I was not at my best.❤️‍🩹 So after a face mask, hair mask, bath salts, exfoliating and a shave !? (Already had my smear so this one's for me!😆) I feel so much...cleaner😄 and perhaps a little better too.😉

Try do something nice for yourself this weekend. It's so important and I don't think any of us do it enough.😌

PS I did shave one leg twice and not the other one but hey ho 50% is still a pass!🤣🧠🤦🏼‍♀️

A great pamphlet from The Brain Tumour Charity .🧠 A brain tumour symptom checker by age. Early detection is so important in all critical diseases. Don't brush off anything that's worrying you. Get it checked.✅️
I brushed off my symptoms for almost 5 years and ended up with a 4cm tumour and a massive life threatening operation.❤️‍🩹 Don't leave it.🙏 Better safe than tumour.‼️

I had a beautiful weekend away with my little family last weekend.🏕🌻

We got to take in the sunsets and appreciate the night skies with millions of stars.✨️ It was such a good reminder of how vast the universe is and that each day, regardless of what has happened, the sun will rise and the sun will set.🌄

We are the same. As much as life can throw the hardest and most traumatic things at us, we try to carry on. We keep getting out of bed, hoping for a better day. We keep fighting, believing we can win. We keep trudging through the pain to get to the other side. The strength we build is never wasted. It is who we are now and we are far more beautiful for it. ❤️‍🩹

"There's a crack in everything, that's how the light gets in." ~ Leonard Cohen 🌈

Keep watching those sunsets and waking with the hope for a brand new day.💛☀️🌱

7 month's post craniotomy today! 🧠🙌

It's also 6 month's since I had a seizure. 😬The meds seem to be keeping them under control which I'm thankful for even if I'm not a fan of the side effects. 😵‍💫 I had also hoped today would be a milestone as I thought it was going to be the day that I could legally drive again...only to find out that due to the pesky seizure, I need to wait another 6 months!😔 I am still hopeful that it may happen sooner but I have taken the "It is what it is" approach. My approach to most things these days!🤣

Not driving has been the hardest part post op. So much of my independence was lost the day I was diagnosed and 10 months later, here I sit. (literally!) It's very hard to start one's life again when a huge part of it is gone. The impact on our family has been immense. Russ has taken on so much more and my dad has helped hugely fetching the kids from school. Wonderful friends have gone above and beyond to help. I am eternally grateful.💜

So the next few months will be a challenge but we have made some decisions to get us through it which are necessary logistically and for my own mental health and well-being.❤️‍🩹 Sometimes needs are more important than rules!

I also need to get back on the road again albeit with my feet! So I've signed up to do The Twilight Walk for the Brain Tumour Charity. I'm hoping to walk 130kms over the month of October to raise awareness and much needed funds for this very important charity.❤️👊 Keep an eye out for more news on my plan in the coming weeks. 😊

Finally, I thought I'd share the card Oli made for me when I went into hospital.💙 A reminder that I am 'owcay'☺️, some days I'm even good and one day soon, I'll be great!!🌈☀️🌱

Have a beautiful weekend special peeps. Keep your loved one's close and hold them tight.💛💛💛

I've just reached 400 followers! Wow! A very heartfelt thank you for walking this path with me.🙏🤗🧠❤️‍🩹

6 months post craniotomy today.😌❤️‍🩹🧠

I always feel emotional on these milestone days. Not sure why. I should feel elation surely?! Perhaps it's a mixture of elation and sadness. Elation that I am here and doing well and sadness at how this has changed my life.

Then I read this...👇 Ain't that the truth!! When you're faced with a life changing or life threatening diagnosis, illness or injury, you take stock of the fact that you may only have a limited time left. And that is terrifying.😳 I think I am only processing the gravity of this now. But this quote is also weighted with pressure. The pressure of making the most of every day, not sweating the small stuff, making memories, ensuring all your relationships are in order and and and...

And here I am struggling with the pressure of starting my life again. Frustrated with my lack of independence. Irritated by having to take medication every day - forever possibly. Not exactly living the 'you only have one life' mantra!🤦🏼‍♀️

BUT 6 months ago, all I was hoping for was making it through the surgery and coming out as close to who I was going in. So if I focus on what I was hoping for then, I'm going to cut myself some slack.😉 I'll get there. It doesn't have to be now. I don't have to have this amazing new life now. I can just keep processing it all. The good and the bad. Who knows what the next 6 months will bring? But I'll get there - one good or bad day at a time.💜

Thanks for listening to my ramblings. It helps get it out of my head (which as you know leaves a lot to be desired now!😂) and I always feel lighter for it.🌈 Hopefully there's a take away for you too.😌

This week has been hard. Trying to focus on my health, fitness, studies, finding work, managing day to day household demands, feeling angry at not being able to drive... It has all weighed heavily on me. I've felt very tired and defeated. So I decided to return to my 'go to' book and open it at any random page and this was the message.💜

We are so full of what we are not that we forget that we ARE enough.😌

YOU ARE ENOUGH.🤗

Hope this helped anyone who needed this today. It certainly helped me.🌈🧠

All credit once again to the incredible and his must have The Comfort Book.

I celebrated 4 months post craniotomy by having my hair done.💇🏼‍♀️😌

I thought I'd not be able to wait to go but then felt quite anxious about it. No-one has touched my head since the op (barring getting my stitches out) and I wasn't sure how I felt about a complete stranger being the first one! 😵‍💫

But I'm pleased to say, apart from feeling like I might pass out when she started putting the foils in (which would have been terrible after I'd spent 10 minutes assuring her how totally fine I am!!🤦🏼‍♀️), it was fantastic! I felt so much more like myself after. I know it sounds (is?) shallow but it felt really good to just do something normal and be able to look in the mirror and feel good.💜 Not to be reminded every time I see myself of what happened. 😌🧠

So I've had a good week since then. Perhaps it's the hair or perhaps time is really the great healer one likes to believe it is.🤷‍♀️ But I shan't get ahead of myself! Celebrate the good days and move on quickly from the bad ones (and enjoy my luscious - with a slight hint of a bald spot! - locks while I'm doing it!) 😅🥂🧠👩🏼

♡ Please note! ♡
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I've posted some timeline pics of my cut and scar in the comments. Please don't view them if you'd rather not. But it is helpful to my followers who are facing or going through the same.💜💜💜

Felt this wholeheartedly today!😴 Had an hour video assessment for my PIP (Personal Independence Payment) application.😵 I was so emotional verbalising everything that's happened over the last few months...ended up with a stonking headache and napping twice!! 🤦🏼‍♀️

So I intend going in to this weekend with this in mind: Time does not always need to be filled. Do nothing. And rest. 😌🌱

Have a restful weekend all you beautiful peeps!❣️🌈

I will never forget that moment when the neurologist showed me my MRI scan and what they had found.🧠💔
We are all just a moment away from becoming a completely different person.🌱❤️‍🩹

3 months post craniotomy today!🧠❤️‍🩹😌

Some days I feel like it was yesterday and other days I struggle to believe it really happened. But I'm reminded by all the little things that have changed within me and outwardly. 💜

I am so forgetful now - something that was always a strength of mine. I never forgot anything, especially 'things to do'. Now I find myself living each day like Dory!🐠

I have to really concentrate when doing things I never used to think about. I make coffee and forget to put the kettle on, I put a dishwasher tablet in the washing machine, I run a bath and forget that the water is running!🌊

I lose and misplace things all the time!😵‍💫

I get so tired and socially it's a struggle to process lots of conversations at once (do kids speak any other way?!😂). Sometimes I just need quiet and a timeout.🧘‍♀️

My head itches so much now that my hair is growing back! I take lots of ibuprofen and paracetamol...headaches are part of my anatomy now.🩹💊💊💊💊💊💊💊

This may sound like a real whinge on a day I should be thankful for. And believe me, I am very grateful for every day. 🙏 But it is still hard. I wish that I could say after 3 months that I am 'back to normal' but I'm beginning to realise that this may never be so. And eventually I'll accept that this is also okay.🌈

All these niggles that frustrate me (and my loved one's!) are a small price to pay to still have this life in front of me.🌅

Now it's time to start wearing this 'new me' - warts, wisdom and all - with courage.🌻

MRI results today...🙏 Wish me well!🌈🧠❤️‍🩹

UPDATE: Thanks so much, everyone. 😌

Good call with the neurosurgeon. All looking as it should. Blood flow through superior sagittal sinus looks normal again. There's no sign of any regrowth. My brain has started to occupy the space it made for the meningioma. There's still a hole where it was but it's smaller and I suppose a reflection of who I am now. ❤️‍🩹 A little broken, forgetful, tired, overwhelmed but at least not beaten.🧠

Another MRI in a year!🙏 There's a 20% chance it can grow back so they'll continue to monitor.

I am very relieved and grateful but I'm also still processing everything that's happened over the last 5 and a half months. Very mixed feelings today... And that's okay too.💜 I need to feel all the feels!

I'm certainly not the same person I was 6 months ago but I hope to eventually be better for it. One step at a time...🌱

Scan day tomorrow and so the anxiety begins again...😵‍💫

Here's hoping all is looking as it should. Perhaps this hole has even got smaller?! I saw a scan of another meningioma patient 6 months post op and you couldn't even see the hole anymore - it looked like a normal, healthy brain! 🧠

The brain is truly incredible. They say there's far more we don't know about it than we do...frustrating when diagnosed with a brain condition to say the least! But does make one feel in awe of this relatively small part of our body that controls so much.💜

So off for an MRI tomorrow. Not my favourite thing especially when made to wear a mask during it as well!!😷 Claustrophobia at its worst for me.😵 I remember the first one I had 6 months ago and telling Russ afterwards that whatever's wrong with me, I hope I never have to have one of those again...and now I'm grateful that this may be the only thing I need to endure over the coming years.🌈

It just shows how quickly perspective can change.❤️‍🩹

I'll keep you all posted on my results.🌼💟🤗

Happy Weekend everyone!😂

First week on the new meds and so far so good. Early days and still on a very low dose so we'll see how it goes...🤞

Lots more energy this week and have walked 10,000 plus steps on four days!💪 Total of 152,278 steps so far for the Brain Tumour Charity.💜🧠

This is me!😁 Super proud to have my story shared on The Brain Tumour Charity page.😊💜🧠

"5 weeks ago, I had a craniotomy to remove a Grade 1 frontal lobe meningioma. It has truly been the hardest time of my life but I received the most wonderful care and support.

I never thought this would happen to me but I am incredibly thankful to be here telling my story and healing every day.

I am so grateful and very aware that there are many others who do not get an outcome as positive as mine.

So in honour of all those walking this very scary path and those who sadly were taken too soon, I'm doing Conquer the Steps in March for The Brain Tumour Charity. I have no idea how many steps I'll manage as my days are still up and down but I aim to get up to 10,000 steps on one day at least...one step at a time." - Holly

Why not get out for that Sunday stroll and make those steps count?
It's not to late to sign up at: https://www.facebook.com/groups/conquerthesteps

This sums it up so well.🤯 Frustrating as I'm more of a straight line kinda gal! 😬
Really struggling with fatigue and a headache I just can't shift today.😪 Have had some busy days of late. It's hard to admit that I'm paying for them now... Send patience please!🙏😔

Word.👌Not easy but working on it.💜🧠

Saturday 26th February was 1 month since my craniotomy. I woke feeling so positive and good about how well my recovery was going and then I had a seizure.😔

I knew this was a possibility after surgery but had hoped it wouldn't happen to me...you'd think I would have learnt by now! 💔

It was a focal aware seizure which means it centred on one part of my body (for me my left side), I was aware throughout it and could remember it afterwards. It affected my mobility, motor skills (I was eating my breakfast and suddenly couldn't pick up my knife), it felt like intense pins and needles and I lost my spatial awareness. This time I had involuntary movement in my stomach which has never happened before.

It totally threw me. I felt so beaten. It felt like all the steps forward I'd made were wiped out. My confidence was completely shaken. How will I ever regain my independence?? You see up to this point, I felt like I was in such control of my recovery. And then this.

Something I can't control. This may be the only seizure I ever have, it may be the start of some or many or the prelude to a much bigger more terrifying one. There are no hard and fast answers. There is far more we don't know about the brain than we do.🧠

So it's back on the anti-seizure meds for me.😒 Hoping it's not forever and that my body and mind welcome them this time.

In the mean time, I'm walking, not every day but when I feel I can. Yes the exercise is good but my mind and heart need it more.💜 And I'm raising some money for a good cause along the way which is giving me purpose. 🙏 The Brain Tumour Charity

This road is not a straight one and there's no silver bullet. I just have to keep going. One step at a time. All your love and support really helps me keep taking those steps, thank you. 🌈🌼

(📸 )

💜🧠

4 weeks post surgery!🧠 Roots and grey hair look more frightening than the cut! 🤣 Just need brain to catch up with body now...💜

My caring boy.💙🧠

(That is me between a bush and a bench with an electric fence behind...probably not the ideal location for me right now🤣)

A selfie I took 3 weeks ago, a few hours post surgery and just before I was about to pass out for the 2nd time due to low blood pressure after all the blood loss.🧠

Those hours after surgery were pretty scary especially when I had my legs hoisted in the air and knew my hospital gown wasn't covering much!🤦‍♀️ But I had the most amazing care. A wonderful nurse called Katie was with me all night. She was so warm and kind. Cared for me when I got sick everywhere while I was losing consciousness again and only finished her shift an hour later because I'd kept her so busy through the night and she still needed to get my notes up to date. Nothing was too much trouble. 💜

I take my hat off to nurses. They should be held in the highest regard. I never felt alone during the scariest time of my life thanks to Katie and the many others like her who cared for me along the way.🙏

Tonight I got to read my children a story and put them to bed, to be the carer again. As it should be.😌🌈

❤🧠

Happy Valentines Day to all of our community and supporters!
Whether you are celebrating together, with friends or indulging in a little self-care, don't forget to be kind to yourself and enjoy the little things.

"It never rains forever." 🌈

So on Monday morning I had a call from the specialist nurse to say that the surgeon had my histology (biopsy) results and would be video calling me at 2pm. Immediately, I thought the worst. It was 11h30, why was she calling me so soon? It had to be bad news.😬

I've realised since I got such a shock diagnosis that I now expect to hear bad news. I've never been like that. But I suppose when you've had the wind taken out of your sails once, it will take time to get back to my 'of course I'm fine' bravado!😳

Well, it turned out to be the first step in really believing that I'm going to be ok.💜🧠

It was a Grade 1 meningioma which means it was definitely benign.✅
It only has about a 5% chance of growing back.✅
And if it does, it will be very slow.✅
She removed all of the tumour except about 1 mm that was too close to the superior sagittal sinus.✅
I don't need to have radiotherapy!!!✅
I am off all steroids and anti-seizure drugs as long as I don't have any seizures or swelling. ✅
I'll have an MRI in 3 months and at regular intervals thereafter. ✅
If all continues as I am, I can start the process to get my driving licence back in 3 months. ✅

The relief was incredible.😌 I still have a long road of recovery from the surgery which my body is sure to remind me of every day but with this positive news on my side, I know I can keep going!🌻🌻🌻🌻

Thanks for all your positive thoughts and messages. It is so powerful to feel the love and support of so many no matter how far apart we are.💓

(Credit to for this beautiful passage from The Comfort Book. It is exactly what it says on the tin and highly recommended.💙)

So after a crash and burn day yesterday (spent the day in bed - just couldn't!). 😔 I'm realising with this that physically things heal quite quickly, whereas mentally and emotionally it's a bit 1 step forward, 2 steps back so I need to be patient...not my strong point but I also don't have much choice! The brain dictates...🧠

On a happier note, today was the great hair wash!🚿👩 Almost 2 weeks since I've had a shower and it felt so good!😁 To feel (and smell) the iodine and blood washing away was such a relief.💜 Another thing I will never moan about having to do again! I can't use anything fancy on it for a while, just baby shampoo so rather frizzy and dry but it's CLEAN! Small pleasures these days.🥰

Special mention to Russ who painstakingly and so gently detangled and brushed my hair taking care to dry my wound and not hurt me.❤ It was a process, believe me! I almost had dreads in places!

Poppy insisted we do some makeup after and she gave me a manicure...😬 I won't lie, she has not loved her mummy's new appearance, she has asked me every day if it's time to wash my hair yet!🤣 The honesty of 4 year old's...😉

So armed with my 'doek' (South African for 'headscarf'), I'm off to watch the rugby and I may even treat myself to a cheeky spritzer!🥂

Big Day Out!🧠

Went to have my stitches out today and a blood test to check if my haemoglobin has stabilised.🤞 Wound is healing well so will attempt a hair wash soon... 😬Felt really good after a full night's sleep without having to wake for painkillers.😌 Crashed when I got home - slept the rest of the afternoon. One week post op and going strong intermittently!💪😅

In other breaking news...we have 3 down with Covid now.😷🤦‍♀️ So lots of cabin fever especially after we'd isolated for 2 weeks before my op!!😅 I couldn't make this stuff up if I tried!! This too shall pass...🌈

My perspective for most of the day.🌷 Lots of pain. Not managed much sitting up. Poppy's tested positive for Covid (obviously!🤦‍♀️). So a hard day all round. Hoping for some pain-free sleep tonight and an easier day tomorrow. 🌈

Thanks for all the love and support. 💜 Especially towards my Russ, my mum and dad who continue to carry the fort!🤗

Never underestimate the difference a day can make!💜

Yesterday looking like a strong contender for "The Beast" and today, after a lovely bath, wet the ends of my hair to try get some of the gunk out, less swollen and feeling a little more "me".❤ One day at a time...🌈

My consultant asked if I'd like a picture of my CT scan post op and I eagerly said yes! Felt quite different when she brought it to me...that's a hole where the tumour was!😔 My brain will slowly shift into that space but it will never fill it completely. I will always have a hole - a reminder I suppose.🧠 It's incredible, really. I am still here and functioning so well so far.💜

Lots of swelling today and two black eyes imminent so feeling an ugly bunny but this will pass and I'll keep reminding myself how lucky I am.🌈

Thanks for all the well wishes and love.🌷