11 November 2019
Laura, Senior Communications Officer for the charity Carers UK, has NF2. She underwent surgery to remove a tumour from her spine at King’s College Hospital in London and decided to share her experiences in a blog. Here are some extracts:
Before the surgery, 28 April
“As it turns out, the timing is pretty awful! Now is the busiest time of year at work, thanks to things like Carers Week, which runs from 10-16 June this year. I hope I’m back at work in time to lend a hand and make sure everything runs smoothly, but my boss has told me to forget about work and focus on recovery. One of my best friends is getting married in the same week in June, and I’m determined to be there and enjoy celebrating the day. I have no idea if that’s realistic or not, as I haven’t had invasive surgery before"
Day 1 on the road to recovery, 29 April
“It’s around 11.30pm as I write this – and I’m alive and well. Surgery was longer than expected, starting at around 1pm and only coming out on to the ward at about 7.30pm. When I first came around in the recovery room, I wasn’t able to move my left leg or foot at all. Talk about terrifying! One of the (rare) risks of this surgery is paralysis and I won’t pretend I did anything other than cry, panic and frantically try to get the leg to move. Well, as much as you can do when you’re still under the influence of anaesthesia, flailing on your back like a tortoise. It was a pretty wimpy attempt.
Now, it’s several hours later (around 1.30am) and although I have feeling in the leg and can move my toes and ankles, I have to pick up and move the leg itself like a very heavy, very solid sack of potatoes. A downside of having long, strong legs, that I never thought would become an issue, is that they weigh an absolute ton. I’m hoping that as the bruising heals, I’ll regain control of my leg. I can’t bring myself to think about it lasting too much longer.
Now 6am, the nurses turn on the lights in the room and start the morning routine. I’m promised morphine, but then the nurse in question has to change a bed whilst manoeuvring the occupant in and out of it. After a very slow trip to the bathroom in a wheelchair – transferring in and out of it feels like my back is being ripped open – we finally get me back to bed, where I spend ten minutes panting and crying from the pain and effort. Oral shot of morphine administered, now all I can do is wait for breakfast – not to mention my first coffee in two days – and hope that I’ll be able to keep it down.”
Day 3 on the road of recovery
“Last night, I made the terrible mistake of curling into the foetal position on my side in the early hours of the morning. It was incredibly comfortable, but when I woke up all of my back and abdominal muscles had locked into that position and I had to call for a nurse to help “unfold” me! Definitely do not recommend doing this.
Around 11am, one of the doctors came to see me. Something he said made me realise that it’s possible my left leg won’t completely go back to normal. Cue the waterworks and a bit of a panic. How will I get around my flat? Get the tube? Go to work? Socialise? What will I do at the wedding – be the leaning tower of liability, always hanging off someone’s arm, or start looking for a bedazzled Zimmer frame or wheelchair? Once the doctor left, the poor male nurses didn’t know what to do with me, sitting there ugly-crying. A few tissues and awkward pats on the shoulder later, they left me to it.
Fast forward a few sniffly, self-pitying hours to 2pm, when a physiotherapist with an incredibly warm smile and ready-for-business energy breezes into my room. I expected the worst when her checks made it so clear that there was a huge difference between the strength of my two legs – one passing all the tests with flying colours, the other floppy and mostly useless.
You can imagine my surprise then, when she declared that she wanted me up on a Zimmer frame. Immediately. To my absolute amazement, in no time at all I was able to reach the end of the corridor. Only when I caught the physiotherapist’s concerned eye did I realise that I was loudly sobbing – but I assured her it was more out of happiness than agony (although I did accept a morphine shot immediately afterwards).”
3 weeks in
“It’s now been three weeks since the operation, and almost two weeks since I came home! The strangest part of recovery has been going from living a typical busy Londoner life, functioning fine on 7 hours’ sleep a night, to needing 10 or so hours plus a daytime nap.
My local hospital still haven’t processed the referral for neuro physio, so frustratingly I’ve not had any outpatient treatment yet. As much as it’s fun doing mini squats at home, my doctors and GP said it’s important to see a neuro physio as soon as possible, so I might now have to look into going private in the short term which isn’t ideal and will be expensive! My mobility is one of the main obstacles to returning to work, so it’s important that it’s being dealt with properly.”
9 weeks since the operation.
“It feels like the month of May just didn’t happen, then before I knew it, my friends’ wedding, returning to work, and my birthday (within a week, in that order!) had passed in a blur and June was over too. I took a walking stick to the wedding instead of a crutch, and even managed some embarrassing dancing!
I ended up being off work for 7 weeks in total – missing Carers Week by a matter of days – as my GP wasn’t happy for me to travel to work on the tube until she was sure I was strong enough. Looking back, I was either arrogant or just plain stupid to think I’d be back at work within a month!
Now I just hope to enjoy the summer, having lots of barbecues and spending time with friends. A long- awaited holiday may be on the cards in September or October – but I don’t want to go away until I’m much stronger, as I’m not good at lying on a beach and much prefer city breaks with lots of walking and exploring!”