Recovery Update: 12 Weeks After Brain Surgery
I can’t believe it has been 3 months since I was in hospital.
It has gone by so fast but at the same time has felt like a lifetime waiting for things to improve. Minus the tears, of which there have been many, here is a (very!) brief overview:
The day after my surgery I was told I couldn’t have an MRI unless I got into a chair. It was without a doubt the weakest and poorliest I have felt in my life. As soon as the MRI staff saw me they transferred me to a bed and claimed I shouldn’t have been sitting up; I lay still and willed myself not to vomit.
Verbally, I was told the surgery went well and they had removed the whole tumour. I admittedly wasn’t as relieved as I should have been as I was slightly more concerned about the fact I couldn’t see, eat, smile properly or puff out my cheek because of my facial paralysis in my right. But after a week of constant beeping, terrible food and being repeatedly woken during the night to take my observations, but with the help of incredible nurses doing their best, I was told I could go home.
Read more about my time in hospital “Why It’s Over For Everyone Else. But Just The Start For Me”
I adjusted to life back home after the journey back to Bromsgrove. As grateful as I felt for being looked after, it wasn’t my usual space and I surrendered to being dependent. Recovery began.
I was in a lot of pain and had the GP out. I had gone from not taking medication at all, not even for a headache, to suddenly being on everything imaginable which made me really poorly and caused me to wake in tears most nights.
My mom washed my hair for the first time and I remember being so nervous about my scar but I looked and felt miles better without scraping it into a bun. Started my physio which seemed stupidly easy (toe tapping on the bottom of the stairs, looking left and right, touching the tiles in the kitchen etc) but it was challenging for me and I was unable to do most of the things without holding on or being held, which I found frustrating. How could something so easy be so hard?
Saw family for the first time which settled them but I immediately felt guilty when my Nan later told me she knew something was wrong when I called her before my surgery to lie and say “I won’t be able to call at all next week as I’m away with work.”
Used a straw properly.
Took an early morning trip back to the hospital in London to get the written MRI report. The tumour proved to have all been removed and was diagnosed as a pilocytic astrocytoma. It was surreal going back to the hospital.
Received “more flowers than Kew Gardens” as Phil put it, plus lots of cards and well wishes from people I didn’t expect. I also learnt that the older I get, the smaller my friendship circle gets, but that the quality sky rockets.
I was frustrated before but getting even more so now. Felt bored not doing anything but exhausted if I tried. Made my own porridge, lukewarm and runny, but despite needing improvement I started looking forward to London and being independent.
After telling the physio that I was going back to London she asked me what I wanted to achieve on my own. Of the many things I wanted, walking outside without being held was number one. She got me to do that locally. That morning I had gone from being very dependent to suddenly walking outside unassisted and I realised that until I try, I’m unaware if I can actually do something.
I wondered what else I could do.
Last week back in Bromsgrove and final physio session there. So much had improved but I was still unable to toe tap the bottom stair without being held, else I wobbled and fell over. I had wanted to master that before going back to London but I was ready to brave life alone.
My sister Harrie and I went for a celebratory prosecco on the Friday night and said goodbye for a few weeks – first alcoholic drink.
Felt homesick being back in London and as though I had moved out for the first time. Everything was exactly as I left it, but I felt so different even though it had only been a few weeks. I realised that everything now falls into two categories: before brain surgery and after brain surgery. Because of this, I ended up having a massive clear out and removed bin liners full of clothes, books, things.
Went back to the hospital for an appointment at the opticians. Still seeing double but it has improved – it measured a 25 when it was previously a 30, whatever that means. The optician said my eye was super red though after not fully closing or blinking for weeks so I purchased eye drops.
Took thank you cards to the surgeon and staff and went to visit Ronnie, a girl younger than me that had been in hospital for months and who was in the ICU with me. Was told by the nurse that she had been discharged recently. The nurse also added that she remembers me and I look so well and glamorous (i.e. my hair wasn’t in a bun and my skirt was a change from my pjs!) I shed happy tears for Ronnie as I waited for the lift.
Realised my senses reset when I had a relatively mild curry that week. I’m usually pretty good with spice so I thought I was playing it safe. Even the mildest curry had my nose running, my eyes streaming and me downing pints of milk. Note to self: no curries for a while. Or in public.
Finally shared my blog with people on instagram and started selling bracelets to keep me busy. Received so many messages which was unexpected but I didn’t sleep at all that weekend as my mind was on overdrive.
Had second alcoholic drink at a Mexican reunion in Surrey. I googled whether it was actually ok to drink alcohol after brain surgery and read a forum that claimed “alcohol carries risks, but so does the surgery that made you google in the first place and so does the meds that will get you through it.” Decided to drink to that.
It rained all the time and I couldn’t leave the house as my “steady-stick” was also an umbrella so I baked peanut butter and chickpea blondies and tried puzzles, yoga, painting and reading.
Stopped myself getting cabin fever by planning little coffee trips here and there with people. After exhausting the coffee shops around Hammersmith, I joked to a guy who worked in one that now knew me well “either I come here too often or you work too much” and decided I needed to venture further and start ticking off my London list. I met a friend at Biscuiteers for yummy tea and cake.
Went to an amateur comedy night with Em and Maddy, and after not laughing I was told “if they can’t make you laugh, they have serious problems.” It’s true, I do laugh a lot. It’s also true that they were awful. Although I believe everyone has to start somewhere, “what do you call a queen with no legs… a drag queen” is about as hilarious as it got.
The girls slept over and we cooked curry and pizzas together. I had been feeling quite low from being alone most of the time so I didn’t realise how lovely it would be to have them over to and feel like we all lived together again – properly belly laughing, despite the failed comedy night attempt.
I didn’t sleep much. I found it difficult to move my head or get dressed as my scar was incredibly painful. Called the GP out and was prescribed antibiotics for it but was told the actual wound had healed well and the pain was just cosmetic.
Had more dinner/coffees with friends plus a visit from my best friend Heather and a cuddle with dreamy Scarlet. Weather was amazing and often too hot to sit outside, bonus.
Facial specialist came to do an analysis and said that out of the twelve nerves we have in our head/face, only one has been affected (apparently blinking and smiling is the same one). I found this promising and also rather unbelievable that the surgeons were able to completely remove the tumour and only cause temporary damage to one nerve! She also added that the face is usually the last thing to come back.
Had more catch up dinners and coffees with people and did an interview with Claire at Aunty M Brain Tumours. I find it hard to believe I was first diagnosed at 18, something I often forget.
Read full interview “Migranes Turned Out To Be A Pilocytic Astrocytoma”
Got an early ride to Birmingham with my cousin Alex at 5.30am on the Friday. Have quickly learnt that London is an amazing city for a socialite – people are either working or drinking on roof tops, enjoying the sunshine. Doing neither meant the cabin fever was getting worse.
On the plus side, I had managed to become obsessed with Ricky Gervais, watching all of his stand ups, interviews and binging on his box sets. Also went to Homeslice for a catch up with David. No cutlery and the reality of bready things being hard to chew made it difficult. Not my wisest choice but great pizza.
Back home I enjoyed lots of lunching and cake with my nieces, grandparents and homegirls. Also walked to the high street and back completely alone without an umbrella or suitcase or person for balance – sounds simple, but I was so happy with myself.
I can also now toe-tap the bottom stair without holding on.
I was lucky enough to be Godmother at Scarlet’s christening but I did apologise for being super wonky on otherwise really lovely photos. I was told not to worry at all and that Scarlet will appreciate it when she’s older; if not the candid (naturally staged) side ones are nice at least!
Needed a coffee to stay awake in the Church – fatigue problems!
I came back to London three days ago and I’m already not sure of where I want to be. London is amazing and having my own space is truly lovely but I’m finding it so quiet again. I’m trying to remember that it won’t always be this quiet and that I should enjoy it whilst I can. It won’t be long until I’m back in the hustle and bustle of London, walking further and feeling busy at work. But reflecting on how far I’ve come I’ve realised I am so much steadier and more confident, and I’m progressing more everyday.
Onwards and upwards. x