Week 5...

One week on...and I'm still here at UCL. Yes...it has been 5 weeks, and yes I have most definitely had enough! It really has been a right rollar coster this past week, properly due to the fact I haven't really slept well since I've been here, because hospitals really aren't the quietist of places to sleep! With new patients arriving, nurses chatting and ob's being taken at 2am...Yes that is correct!...2am! Tomorrow I'm going down to have a dilation done, into the opening of my intestine. If you remember I had botox done last week or so, but when they were in there they realised actually how serious it was, and they wanted me to have this done now. This dilation is when they infant a balloon inside, into the opening of the intestine to keep it open. One good thing about this, is that I won't have to have the botox done every three months as this is semi-permeant...yay to less endoscopes!...they're horrid! Hopefully this will help the nausea and enable me to have a little bit more oral too. Also, they finally got the results back from my full thickness biopsy which was taken last year! last year?! Wheres it been all this time...in a pickling jar or something?! Anyway, they have said its comes back abnormal and they want to take another full thickness biopsy when I have the surgery. I was been informed that the surgery will be done within the month hopefully, and it's being done at East Surrey Hospital. This is the surgery for the new JEC, another biopsy and also taking out a part of my intestine where it has narrowed so much from scar tissue causing problems this is called adhesions. I'm really not looking forward to this but it has to be done! But at least it's going to be done at my local hospital. This week really has been tough. Sometimes I feel I'm the only one going through all this, and there's no where to go. But I am lucky enough to have some lovely friends, who have similar conditions to me so we do tend to compare on a regular basis! I would hate to think there are people out there, who is reading this and doesn't have anyone to turn to? Because its a lonely condition and very limiting. But you've got to keep your head up high and keep trooping on, because there is always light at the end of the tunnel. I really do feel that you must set yourself goals, even if its as simple as getting strong enough to go on a little trip somewhere! Because, for me anyway if I know I have something to look forward to it always helps and keeps me motivated too. If you're reading this and want to chat or discuss anything I'm more than happy to listen and help, you can find my email address on my contact details page. This weeks picture below is when my brother Matt and the lovely Kate came to visit me! I hope everyones having a good week! keep smiling x

My days at UCL

One week on here at UCL and I'm just about hanging in there you could say! Every day I'm getting stronger and stronger and I'm not letting anything stop that! Since I last blogged, they've still decided for me not to have TPN (YAY!) and to crack on using the JEC. I'm still waiting to see the surgeons however they've now decided for me to have my op for my new JEC done locally because the waiting list here is 4 weeks as an inpatient...sod that! I should hopefully have the botox for the opening of my intestine done either the end of this week, or the beginning of the next week. I have to have this done every three months now which sucks big time as I hate having endoscopes with a passion. The botox they use is the same botox people have put in their face which I think is quite funny! I had the lignicaine infusion last Friday, and if you haven't read my last blog, this is an infusion which has anaesthetic in it to help chronic pain. The first couple of days I didn't notice anything different but then on the third day I noticed that my background pain had reduced ever so slightly, and when your living with chronic pain every little helps! So I now have to have this done every three months as it doesn't last forever. I've also been seeing the physio who are helping me with my legs. I have terrible de-conditioning muscles due to being in and out of hospitals for the last two years. They are wanting to send me on a three week in patient rehabilitation in London, but for that I need to be strong enough to get through it. So in the mean time, I have to have physio. I cannot wait to be strong again, I truly believe that people take their own bodies for granted, because you really don't now what's around the corner! Ever since I've been poorly I think to myself that I've just got to keep going and that I will be strong again to do the things I love! You've just got to keep your chin up and whatever is thrown in your face you've just got to keep trooping on! There's so many things I want to do now, which maybe before all this happened I wouldn't of ever have thought of doing before? Like people say things happen for a reason, even though this one is a rubbish thing to be put through! I want to travel the world, see whats out there, walk the Great Wall of China, drive down from Seattle to LA, go to Niagara Falls, volunteer in another country to help people's lives, the list goes on and on! I truly believe that in hard situations you must have dreams, dreams that will drive you forward and keep you going, evan if its a small thing as simple as making it to the beach one weekend or seeing a friend! Anything that will make you smile. Because smiling is definitely a form of medicine! Picture below is of my lovely brother Matt, (...typical face of his) coming to visit me!