A Plateau

I seem to have reached a bit of a plateau in terms of my recovery and it's got me a little down this week. I look back to how I was feeling last Friday/Sat and I can't really see any difference. I am still on the same amount of painkillers (some days this week a few more), I am still mostly in my PJs and napping in the day, I am still sans make up, I can't go out, I can't drive etc etc. I am inherently inpatient and so I have clearly forgotten that I had brain surgery a mere 19 days ago! There have been a few improvements, so it's good to have this blog to reminnd myself!

Mon and Tues this week were awful days overall. I woke with very sick headaches both days and had to go back to bed after having been up only just long enough to eat some toast (wheat free of course) and take my painkillers. That said, I did have my first (non family) visitors this week and that was really nice.

On Monday, a close girl friend came over. On her arrival I felt absolutely awful and she had dropped her little one off at his grandparents as I couldn't face the noise and excitement of an 8 mth old. Gutted as I so wanted a cuddle - he is scrummy. So we only caught up for a short time. But she came bearing wonderful gifts - M&S Lemon, Ginger and Ginseng tea which is aptly called 'Revive' as that pepped me up a bit (in fact it's my new addiction, I'm sat here with a cup right now!), M&S Wheat Free cake - delicious and Gossip Girl on DVD (I've yet to watch any - I've saved the OH the pain, I'll start them next week when he's gone back to work as I think that's only fair. I have subject him to I'm a Celeb, TOWIE, Made in Chelsea, Don't Tell the Bride, even I feel a bit reality-TV'd out!)

Tues was much the same - sick headache, didn't get dressed til the afternoon - and when I say 'dressed' it's a minimal step up from PJs to be honest. I look like something out of Jeremy Kyle, minus the multiple tats and piercings. Apologies if that offends, I actually wanted a tattoo on my neck, under the hairline and the OH said he would divorce me if I did it! And he meant it. As it turns out I have my 5" scar there now so thank goodness I didn't get one! You got to take the positives where you can :-)

Weds, miraculously, I woke without a headache which so far has been the one and only day that this has happened. It was a good day. I saw another lovely friend and her gorgeous little boy (2yrs). They came bearing lovely gifts too - gossip mags, wheat free cake (yummy) and flowers. Her little one was so immaculately behaved. It was good timing as I would've been able to cope with any little one (as gorgeous as he is - did I mention he's gorgeous?) had it been Mon or Tues.

Thurs and Fri - the sickly headaches returned. Thurs I pretty much just laid in bed or on the sofa in front of more rubbish telly. As I mentioned, even I am getting the feeling of slightly overdosing on. I have 5 more weeks off work, I am not sure what I am going to do with myself once the TV stops entertaining me. That said, I am able to read a magazine / book now which I wasn't to start with.

Friday afternoon I managed the slow walk around the block that I'd been advised to do by the physios and thankfully although it was cold, it was really bright and sunny. I was feeling so sick that I thought actually the fresh air might help and it did a little bit. There we are, that's progress from last week!

Shortly after the walk, I had another short visit from another girlfriend and her bubba who is equally as gorgeous and was equally as quiet. More pressies (chocs, mags and a card) and hugs! I've felt very loved this week. It's been lovely to have so many friends coming over. And I have SO many cards - I am overwhelmed, especially in this technological age of email, FB and blogs! And don't even get me started on Royal Mail...

On Friday evening, the OH then took me to the Drs as I was nearly out of anti-sickness tablets. The Dr was really encouraging and was impressed with my scar and progress, which was reassuring. When we got home, I cooked a very quick and easy salmon stir fry. I was absolutely exhausted afterwards and my head was throbbing from looking down, even though it was a matter of 15 minutes. I am doing a little bit of physio each day, looking right/left/down and up, but the prolonged looking down is not something I am used to.

So actually yesterday was a busy day, all in all. I think I probably overdid it, but I have read about some amazing people that have been through far worse than me and it's so often their attitude and approach to life that gets them through. When I was in hospital, some days all I could do was repeat meditations over and over in my head, with my eyes closed and laying down. I wasn't capable of anything else. I could hear my family talking around me, naturally really concerned about me and I so wanted to just say 'I'm OK, I'll be OK' but I just couldn't. That was awful. Everyone keeps saying 'You're doing so well' and I can't quite believe it myself. I'm almost waiting for something bad to happen, like an infection, Meningitis, numbness of the limbs or a CSF leak which are all possible side effects. The OH summed it up well - if it's going to happen, bring it on now, so I can deal with it and get over it. I guess I just feel so grateful that my recovery has so far been quite 'straightforward' that I can't quite believe it.

The sickness is pretty unpleasant and frustrating. But sometimes I have to just force myself out of bed because bizarrely although that's ALL I feel like doing, I have to try and get on with normal life and it usually helps to get up and get washed / go for a walk / do something normal. This morning I forced myself to sit up in bed and I started our Christmas shopping. We are now all done (online shopping is literally amazing) apart from our gifts to each other. Now I've finished my 'Revive' tea and had another anti-sickness, dare I say it but I think the nausea has passed. It's especially horrible nausea because normally if you had a bug, you would be sick and you'd feel some relief, but with this you don't want to be sick because then you'll have thrown up the pain relief and anti-sickness and you'll feel worse sickness AND you'll be in pain. Not to mention me freaking out about bursting my stitches (and now wound) if I'm sick. I have been reliably informed that that can't happen, but trust me, it doesn't help alleviate my fears.

The other thing I am really suffering with at the moment, is not being able to sleep. When I was in hospital I slept all the time, then when I first got home I would nap all through the day and still go to bed at 8pm and sleep through til 8am. Now, I go to bed at 10pm (ish) and I lay there for probably 3-4 hours, sleep til the early hours (usually needing painkillers), then I sleep in til 10am, when I wake in pain and find it hard to get up. The worst part is the 3-4 hours where I am awake. Every time I go to drift off, my tummy flips over (kind of like the feeling I used to get the morning after a night out - 'what have I done?' a lot to be ashamed of, 'who have I  upset?' everyone, 'Who have I phoned at 3am?' people you really shouldn't have) and I get this lurching feeling of

• Oh God, I've had my brain cut open / I've got an implant in my brain
• I have a really serious condition that potentially could effect my whole life
• The nurses could've done me in while I was hooked up to the Morphine PCA
• What if they hadn't diagnosed me and I ended up unable to walk?
• What happens if I never get off these painkillers?
• I've really frightened my whole family (and friends)
• General guilt about what an awful wife my OH got and is he wishing he had never met me!?

Totally irrational and totally unexpected. I spent a long time worrying before the op and about my immediate recovery in hospital, but the recovery at home was always an unknown. I guess the other reason I can't seem to sleep is because I'm not actually doing a lot in the day. I know the answer is to go to bed at 10pm and force myself up at 8am or whatever, regardless of what time I managed to fall asleep, just to break the cycle. The OH is back to work next week and his alarm will be going off around 6am so I guess that will help.

So onto next week. It's all change! OH is back to work and my Mum is coming in in the mornings. I pretty much have visitors planned for the afternoons too, which is nice. I am much more capable than I thought I would be by this point i.e. I'm out of bed, but I can't manage on my own just yet. E.g. I can't make all my meals, I'm not allowed to wash alone, I can't always get dressed unaided, I need help with the stairs, I need help with my painkillers etc. I'm obviously not able to drive, so I need help to get shopping / misc stuff. So massively appreciate my Mum's help.

I've also decided to go in and visit my Mum's colleagues before the Christmas break. They've all been so lovely with cards and texts, asking my Mum everyday how I am etc.

Right, I'm off to have my bath. It's 2.15pm.

S x

Stitches and Staples

Just a quick post tonight to update on my progress. Today I had 10 staples and 16 stitches out. Pics below pre and post! I've moved them down the page as not to preview them on Facebook. I am pretty immune to these now, but am aware some people a) might not want to see them and b) might find them upsetting.


I was super brave (even if I do say so myself!) and barely flinched. It actually didn't hurt too much, but then it's all relative - I think the last few months have toughened me up. Anyway I am v excited at being able to wash my hair tomorrow - hooray!

The Days After the Op (In Hospital)

Mon 7th Nov
So the 4 of us (me, OH, Mum and MIL) arrived at The Wellington South hospital in St John's Wood at 7.20am. I think I was strangely serene by this point. I know I was starving hungry because I wasn't allowed to eat anything from the night before to after the op. There wasn't much conversation in the car on the way down, but I think everything had already been said.

We were shown up to my room at just before half past and before I could even get my coat off, my Consultant and the nurse had arrived with the consent form. I was having bloods taken, the ID wristband put on, blood pressure taken and anti-thrombosis socks put on before I knew what was happening. It was all very quick, but to be honest, I am so glad. For two reasons a) I didn't have hours of waiting around, getting stressed and b) I was back up in my room around 11.30am so I had gained almost another day's recovery time.

Anyway no sooner had I got on the trolley to go down to theatre, I started crying. I had promised myself that I would try hard not to (I've done so much crying over this!), but actually when the time came, it felt like it was OK to do that. I just kept saying 'I am SO scared' and the staff were all very kind.

I gave my family huge hugs and then into the prep room I went. They gave me a sedative to calm me down and then the anaesthetic. It was much slower acting than previous ones I've had and I was in the prep room longer, but because the whole thing was quite quick, I welcomed that. I remember feeling like I wanted to jump off the telly and go running up the corridor screaming. The sedative helped with that!

I don't remember much of coming round in the recovery room. Just being asked if I had pain or sickness and given some drugs to help with both. But I don't remember the pain or nausea if I did have it, it was sorted out very quickly. The only thing I really remember is them taking out my arterial line in my wrist, but not because there was pain or anything.

When I came back to the room, late morning, I actually didn't feel too bad at all. I was chatting and joking with everyone for the rest of the day apparently. Everyone kept saying that I was better than they thought I would be at that stage. I remember thinking not to get too smug about that. (How right I was!)

So at that point, I was flat on my back, with quite a few tubes. I was hooked up to oxygen via two pipes in my nose, a morphine PCA, two canulas for drugs and a drain from my brain. Oh and the inflatable anti-thrombosis socks, which did become very hot and uncomfortable. I think that was everything. The one thing I didn't have and had worried about having was a catheter. The surgeon said that because I was young and it was best to try and avoid catheters for the risk of infection that I should try to use a bed pan. Well, without getting too personal - you can't begin to imagine how impossible that is, when you're numb and lying flat. In the end they gave me a catheter, I was in more pain with my bladder than I was with my head and I became slightly hysterical. I think part of it was something was not as I expected it to be and the thought of wetting the bed was scaring me!

I think I managed to have something to eat and drink, which wasn't easy again lying down but it wasn't too bad.

Tues 8th / Weds 9th
Were the worst 2 days and 2 nights. I was sick continually. I had tried to carry on eating on the Tues, but was pretty unable. The smell or thought of food was enough to make me sick. They took me off the Morphine and I stopped taking the Ibruprofen tablets as these were thought to be making me nauseous. When I say I was sick, that just can't even describe how sick. It's a constant nauseous feeling, with actual throwing up a couple of times each hour I suppose. But obviously you're still lying down and you have stitches (and a drain) in your head, so you are petrified to be sick in case you choke or burst your stitches. It's pretty terrifying. That said, I did really well - it's really normal with the op to be sick for weeks. Actually my sickness was worse when we first went into hospital back in August - I had sickness for pretty much 3 weeks solid.

I had lots of family visitors during this time which helped lift my spirits and the nurses were all great at reassuring us that everything was normal with my recovery. My surgeon came to see me every morning as well.

Thurs 10th
I think they took my drain out on the Thursday and I felt better almost straight away, it was definitely the start of phase 2 of recovery. It was also a pretty awful experience. The Dr said he would pull the drain out (of my brain) and then stitch it up. I was like 'Oh, OK (not the greatest but fine), so I'll have a local anaesthetic for that?' and the Dr said 'No, no, you don't need anaesthetic'. GREAT. I managed to only say 'Jesus' as they removed it, which I thought I did pretty well for. The word I wanted to say starts with FU and ends with CK. As the drain came out, the pressure in my head changed. The weidest feeling in the world. But at least it feels better. My hearing since then has pretty much been 'in stereo' so I keep having to tell everyone 'sssshh!' with I think it wearing thin with my carer / OH.

I was also reduced to 1 canula on the Thurs and I was allowed to sit up a bit more, so gradually I started to feel like I was making progress.

Fri 11th
The Fri was a good day on the whole as I had my first physio session, so I managed to persuade the staff to remove the catheter that I had begged for in the first place. It was driving me IN-sane by this point. So that I could get up. I sat on the edge of the bed for 5 minutes in the morning and then I was allowed to walk to the toilet in my room in the afternoon, with help. It felt very strange, almost like learning how to stand and balance again, but the area of the brain they operate near looks after balance and co-ordination, so it's to be expected I suppose. That and the fact that you've been lying down, flat on your back for 5 days.

Sat 12th
The first day I think I managed to have the telly on. I watched part of a film but was so worn out I gave up part way through. I wasn't able to read a magazine either at this point. It was too tiring and my eyes wouldn't focus. Plus very uncomfortable looking down.

Sun 13th
I was discharged. Top tip for anyone having the surgery, take a neck pillow for the car journey as it would've been really uncomfortable without that. I had my 2nd physio appt and managed to walk up one half flight of stairs.

Worst Part
Other than the sickness and the drain... I think the best way I can describe my stay in hospital, is it was like someone coming off hard drugs, cold turkey. I wasn't sure what conversations I'd had were real, my temperature was all over the place - with sweats and then cold shakes, the sickness, terrifying nightmares and panic attacks. The panic attacks in the night were the worst - I seemed to suffer with those quite badly. I'd wake up, not knowing where I was, but who I was either. At one point I dreamt I had been on Deren Brown's show and that I hadn't really had the surgery, I'd just been hypnotised to think I had and my surgery was actually next week. That really messed up my mind!! I don't think Morphine agrees with me, I hope never to have to take it again.

Best Part
Some of the best things I took into hospital:
- Hand fan (thanks Gdad)
- Mouth freshner (thanks little bro)

And of course, all the support and love I received. Thank you from the bottom of my heart if you sent a text, a FB message, flowers, a card etc. I hope I have said thank you individually to everyone that did, by now. I have tried to do that, because I cannot tell you how appreciated it's been. This op has changed me forever, but I wouldn't wish it on anyone. My family have really been through it as well, so thank you for all the support they have received.

I am not really sure if any of this has made any sense actually and too tired to proof read it. I am EXHAUSTED now I've typed this up, but I wanted to get it down before I forget. Going to have some lunch and a sleep. More to come - but probably updates once a week at the moment.

Stitches and staples out tomorrow - so thinking that will be an uncomfortable day.
Friday - I am hoping to wash my hair. I REALLY hope so because it smells like something has crawled in there and died. And it LOOKS like I have NEVER washed it.

Sarah xxx

The Days Before the Op

Wow, I have not blogged for a long time!

The week before my op I was in a pretty bad place mentally. The day before my op, I totally lost it. There were tears and screaming. I just wanted to do a runner really. And there was nothing that anyone could say or do to help me, other than 'You don't have to have the op, we've made a mistake.' But clearly that wasn't going to happen.

My work were amazing on my last day - I got a card, chocs and flowers which was really unexpected and a lovely speech from my boss. It made me really emotional and I really didn't want to have 6 weeks off work. I just kept thinking 'But I really like my job, I just want to be well.'

I took the Friday off before the op and went and had a massage and facial by myself, locally. Which was heaven for those couple of hours that I drifted off and wasn't thinking about the op or brains. Then my OH picked me up about 4pm and we went into London for the evening before our good friends got married the next day. We went for a meal as a group, which I found it hard to be part of to start with, but gradually I thawed out a bit and really enjoyed it. Mainly thanks to a very old friend and my OH that I was sat in between, just being totally normal and not letting me wallow in my own self pity - thanks guys.

The wedding itself was incredible. OH was an usher and all the boys looked absolutely gorgeous/smart in their suits. The bride was absolutely stunning, the venue was amazing, the food was great, the company was fantastic. I laughed loads and loads. I even sort of made a new friend (she now probably thinks I am a total stalker). It was the perfect way to spend a weekend. And because I thought it might be my last (what an idiot) I danced all night, completely sober and I loved every second of it. I'm not a great dancer, I'm not even an OK dancer, but I literally didn't care because I was just pleased to have use of my legs. I know that probably sounds dramatic, but I will always remember that night and what going in for this op has taught me. No-one CARES how I dance and even if they did, I shouldn't CARE, because dancing isn't about being the best, it's about having fun. And I damn lucky to have a pair of legs and a body that is ABLE to dance. And I hope I never forget that.

We drove home that night, with my in-laws and had a lazy Sunday morning (the day before the op). As I say the day before I wasn't in a very good place. We watched 'Bad Teacher' at home which was really amusing and took my mind off things for a while. When the credits came up, it was like I was brought back into the room and I said to my OH, I feel like screaming and he suggested I did into a pillow. And it was actually really healing because as I did, I burst into floods of tears and he just held me until I stopped. I think I needed that.

My brother and his gf came over in the evening which was nice, although any kind of resolve I had, was lost so I don't think I did much to reassure him I was going to be OK.

We were up at 5am the next day to head to London for the op...