I’d like to start off by saying thank you everyone for the such supportive responses that you gave me to my last post. I know it was a hard hitting one and I was a little bit more matter of fact then I sometimes can be but I think sometimes you’ve just got to be honest when you’ve had a bit of a tough time and it made me feel like a real weight had been lifted! So thank you for embracing it so well!
So I spent a nice peaceful Christmas at home – I don’t think I went to London once for an appointment – I promise I wasn’t boycotting hospitals or anything! I just didn’t get any hospital appointment invitations which I was really quite happy about!!
I even managed to get to some kind of even keel over Christmas! I had the staples pulled from my head which really wasn’t as bad as I expected (and I did keep them, I’ll let you decide for yourself if that’s a bit weird or not. For what it’s worth I think I’ve already lost them, well you can’t blame me, I’d only just had a brain tumour removed, I can’t remember everything! 😉 ).
I even managed to get into college a few times, do some Christmas shopping (well no one was going to stop me doing that!), meet up with lots of friends, had regular physio on my arm which was getting noticeably better everyday and even made the desserts for Christmas day!!
It really was a nice Christmas and new year! It was a slightly busier festive period than usual but sometimes it’s nice to do something completely different and it was a lot of fun! I made a chocolate orange tart, red velvet cake and white chocolate log! Considering I only have one and a half working arms I was very impressed with myself! Although because (again apologise but blaming brain surgery because I’ll take any old excuse!) I stupidly forgot to take photos!
So I had a few appointments lined up for the beginning of the new year and the plan was to get back to college. But of course it never runs smoothly does it?!
So on Monday 4th I went up to London for an appointment in London, I felt fine – I’d had a handful of seizures over Christmas but I thought maybe that was all just part of the moving on with brain surgery thing but things just got progressively worse over the week. My arm started getting weak again and my left leg started to feel quite unresponsive too! After the local physios coming around on Thursday they really weren’t happy and an emergency MRI was booked for me on Friday 8th.
Friday to be honest was a bit of a shit day. I woke up and just knew I felt wrong. I was struggling to walk, my left arm was just floppy and I was a bit of an emotional wreck. We went up to London on a train and after falling on the train we decided to get a taxi to the hospital. I had quite a nasty seizure in the taxi and once we got to the hospital I was rushed to A and E. The nurses and doctors were so on the ball that I was up on the Teenage Cancer Trust ward within an hour and I was already feeling a lot calmer knowing I was in the right place.
I’ve got to give so much credit to my Mum there. Normally I cry she cries – which is fine with us, sometimes it’s nice to have a crying partner! But she was so calm and concise through those crucial moments that it made me feel a lot better and weirdly proud of ourselves!
So I got an MRI and a CT scan done within the next few hours and by the evening my Mum had head home and Will was staying over night.
We saw the Doctor in the morning who had a brief look at the scan and said the tumour had come back.
The first thing that ran through my head was that was bloody quick! To be honest I had kind of expected that. I was glad to have an answer to be honest and it definitely didn’t hit me like a tonne of bricks this time!
So I stayed on the Teenage Cancer Trust Unit until Sunday and was taken to the brain surgery hospital on Sunday night ready for surgery with Dr Kitchen again on Tuesday morning.
I was probably just as scared this time for surgery – let’s be honest, its never something you’ll get used to but it was all a very similar procedure I believe.
I came back to the ward on Tuesday afternoon, projectiled everywhere again – this time it was a very impressive amount (sorry if that’s a bit graphic!) And then was in and out of sleep until about 6 in the evening to which Dad thought it would be highly amusing to see how far we can get through the evening standard crossword whilst I’m quite frankly off my face with morphine trying to force feed me carrot and swede (which actually wasn’t that bad!). I’m pretty sure I drifted off at 8pm and don’t remember much until the morning.
I know I didn’t have any hallucinations about giant bean bags or radiators this time unlike last time!
It was another difficult trip in hospital – like I said, its never gonna be easy and its never going to be home but I think we handled it better this time. I only had a few Teenage ‘I want to go home!’ Moments this time and I’m sure the steroids don’t help! Again, thank you Dad for putting up with my 6 o’clock tears and various shenanigans!
I had a drain in my head removed on Wednesday which unfortunately is just as disgusting as it sounds but once that was out I was free to walk around a bit and I soon found out my left leg was pretty much back normal (touch wood!) Which was a huge relief and my arm was slowly getting there too. I went down for an MRI on Wednesday night and soon was told that they couldn’t see anything on the scan. Again (touch wood) some good news!
I stayed in the hospital longer this time just to keep a closer eye on everything and I’m pleased to say (again touch wood!) No seizures for almost 2 weeks now. Fingers crossed it’ll stay that way for a while.
I managed to get home on Saturday night and felt in a better place this time I think. I was so relieved to be home and we celebrated with a massive Chinese takeaway (when I say massive I mean 11 dishes between 4 of us, we went all out!).
I still haven’t got many answers though I’m afraid – we presume that maybe some tumour was left from last time (all it takes is a few cells!) And I just wasn’t lucky enough to get it all removed the first time.
But I do have a plan. The ‘freaking lazer’ is coming back! Yes, I’m starting radio therapy on my brain in a few weeks to hopefully keep this little nasty bugger away!
After the results on my latest chest CT scan they seem quite happy with how I’ve previously responded to radiotherapy so we’re gonna give it a go in a few weeks. So yes, staying in London again for a few weeks but at least we’re doing something (and I’m desperate to go on an Oxford Street binge soon so I’m all up for that!!).
That is me up to date health wise I think! Sorry if it’s another shocker but I do have something very exciting to tell you which has kept me in high spirits recently!
I went into college just before Christmas and I was given quite a surprise! I’ve been given an award from the Association of colleges and there is going to be an award ceremony at the House Of Commons – YES, HOUSE OF COMMONS, On February 1st. So I’m really quite excited for that!
It’s always good to end on a nice note!