I find it hard to believe that it’s been seven months since my meningioma was removed. Sometimes it feels like yesterday, others it’s a distant memory. Not my usual foodie post, but one I felt that I wanted to share, to help others with a meningioma. Fair warning- there’s lots of my face when you scroll down!
** Note for fellow neuro folk – this post contains a moving gif **
The good news
Firstly the good news. The reason I feel I can now reflect publicly. Early January I had a optometry appointment. The swelling behind my eye which led to them finding the meningioma has 90% gone AND the surgery hasn’t left me with damage to the eye. Then three days later I got even better news: the MRI shows no trace of it left. They are confident that they got the whole bugger out! I resisted the urge to hug my surgeon, but I will be forever grateful for the wonderful treatment I received from the NHS team at Salford Royal.
Finding out you have a brain tumour
Early last year (February), I went for a routine eye test. There was nothing wrong with my vision but I hadn’t been for ages. The test picked up a swelling behind my eye so I was referred to the eye clinic at the hospital. Two scans and an anxious few weeks later, I was sat in front of a surgeon being shown scans of my brain with a tumour in front of it. It was like a surreal out of body moment. Benign (probably) but scary AF. Fast forward to August when my surgery date finally arrived.
The immediate aftermath
I was in hospital for five days in total. I don’t remember much of it. I do rememeber throwing up a lot for first night/day, and not reading the pile of magazine I took in- just flicking through the pictures over and over.
Fun fact: after brain surgery I was give paracetamol for pain control. I thought it would be hard-core drugs, but no. So that means that officially I am hard as nails! There were steroids and anti convulsion meds too, but thankfully only while I was in hospital.
I’d been told the front of my head would be shaved for the surgery so I was amazed to find under the bandages that my super surgeon had shaved a thick tram line from forehead to ear and cut along that – it was so neat!
Off I went home on day five. The walk from ward to car took five times longer than usual and needed a two hour nap to recover from.
A week post op, I went back to have the 21 (I counted them out) staples removed from my head. Sweet Jesus the pain from the last few, which were a bit craggy with dried blood, was like nothing I’ve ever experienced! I turned the air a dark shade of blue! But sweet relief as I could wash a weeks worth of gunk away. Except they tell you to use baby shampoo which doesn’t actually clean and I ended up with cradle cap along my scar which was like XL dandruff.
I did remember to take a selfie every day for the first two weeks. Probably more than I’ve ever done in my life! Interesting that it took a few days for my eye to swell up and I couldn’t open it all day.
The months that followed
The op was mid August. For the first few weeks a sloth-slow walk around the supermarket aisles was enough to have me in bed. But sleep was hard because the hole in my head was soft and impossible to get comfy on at night. So I was tired. All the time. Thankfully I also got the biopsy back which confirmed it was benign and also a type 1. That pic at the top of the page is from that happy day!
I’d literally have to plan my days if folk were coming to visit me, building in nap time afterwards. Waking up each day with a head that felt like a major hangover was hard work. Hydrate, medicate, slowly come round, repeat.
Books went unread (no concentration). Box sets went unwatched (ditto). Baking was burned (frustrated to tears). Days were passed with background radio or hours of The Food Channel. There isn’t an episode of Pioneer Woman I’ve not napped in front of. The electricity bills literally sky rocketed!
I’d do little projects to use my mind: tidying the shit drawer in the kitchen (it took a week), labelling spices! Christmas shopping was 99% done online and wrapped at the start of December- never been so organised! I also got into eBay big time. Too big time 😮
Early December I had an MRI scan, to see if they got got it all out- but had to wait until January for the results. My surgeon had been cautious when I saw him post op: apparently it has been wedged in (gross) so there was a chance a tiny bit was left. But I was being optimistic going into Christmas. If there was any left, a bit of radiotherapy would zap it away. I was out of the woods and that was the best thing. I just had to wait until January for the results.
The new normal
I’ve returned to work. Honestly they’ve been brilliant. Although it’s still tiring, and frustrating that I can’t remember some of the technical minutiae, it is good to be using my head again and reconnecting with my wonderful team and colleagues.
DVLA rules don’t allow you to drive for six months- they rightly have to ensure you’re not at risk of fits or blackout. It’s been a struggle- I once jumped the wrong bus and a 40 minute journey took two and a half cold miserable hours. And poor Andrew has been running me around like a trooper but I need to return the favours now.
I still can’t always remember what I got up to do, or where I put my damn keys, but I think that is as much an age and genetic thing than a hole in the head thing! Still have some lack of feeling in my head and sensitive ears (I’ll be wearing earplugs to gigs for a while yet), and I am in bed even earlier than I was before- mental and physical work can both tire me out some days. But to be honest I’m fine with all that. I’m here and I’m happy.
I wouldn’t wish for anyone to have to go through this, but I’ve felt so much love that it really kept me chipper. My fantastic husband Andrew has been my chauffeur, cook, cleaner and all round rock. Family and friends have checked in on me, called me, visited me, taken me out for cake even though it meant being my taxi. And I was properly overwhelmed with beautiful flowers and gifts and cards. Just thinking back on it now I’m getting a bit emotional. I’m so grateful, I really do love every one of you.
Got in earlier to find a care package on my doorstep from Emma at @farmerswifeandmummy ☞☛☞☛scroll to see. Love it all especially blog mug! Am so lucky to have met great people, including Emma, through blogging. That’s why I still do it, friendship. Thanks so much Emma – ruddy love you 💜💛💚💙 #sisterhood #friendship #friends #carepackage #thoughtful #mug
If you’re reading this because you’ve been told you have Meningioma and have Googled it, here’s my takeaway tips:
- Stop Googling. No good will come of it and you will end up watching a video of a chap playing guitar during surgery 🤢
- Take a pen and paper to your appointments. Write down your questions before hand and jot down notes so you don’t forget what’s said.
- Join the Meningioma UK Facebook group. Everyone is so supportive and it’s good to get some first hand perspective rather than fearing the worst in your head.
- Listen to your body. Tired? Sleep. Even if you’ve just got up. Don’t push yourself too hard. Everyone bounces back at different rates so don’t compare with others. There will be good days and bad, just take them one at a time.
- If you’re going for an op, prep the house to make life easy. I literally filled the freezer with food for a month. Have a good spring clean and write a list for the person who will be doing all the chores you normally do.
If 13 months ago you told me I would be writing about a brain tumour I didn’t even know existed I’d have laughed. I was just back from Vegas and well settled into my new job. These things happen to other people right? Well, apparently not. March is brain tumour awareness month – educating people on all types of brain tumours. So if just one person reading this gets an eye test and it helps then I’ll be happy.
Normal food service will resume shortly – now go get your eyes tested 🙂