Never give up.

Has summer finally arrived? Oh no wait, it's only for 3 days then it's smelly rain again! Come on British summer, get your arse into gear, some of else want a tan! However, I am currently sitting in the glorious sun while writing this so maybe by the end I won't be looking as pale as a ghost! It's been pretty manic recently with appointments up in London, literally up and down like a yoyo! starting to feel like a commuter these days! ...which isn't a good thing with train strikes every other day, I don't know how people do it everyday! Anyway, about three weeks ago I saw the bladder surgeon at Queens Square, London. As some of you know I also have Fowlers Syndrome which means my bladder doesn't work, due to the muscles and nerves not doing what they're meant to do...cheeky buggers. At the moment I have to self-catheterise myself, not all the time but there are some days I could go all day without going to the loo, or I'll go to the loo but not everything will come out. I've had to self-catheterise for about two years now and they wanted to give me a few options to try and help. They have suggested having a pacemaker put onto my bladder, very similar to a heart pacemaker. This would make my bladder work and hopefully a better quality of life, as I then wouldn't have to catheterise and they could control things better. However, they have done studies of this procedure with people with Elhers Danlos Syndrome and it hasn't been successful...typical. Also, after discussing everything I do feel at the moment I am coping with catheterising and I feel I'm maybe not yet at that stage? Especially as i don't have to catheterise 24/7. So they have said I can come back in one year and we can see how things at going then. As they said I have a lot of my plate at the moment and a lot of surgery coming up, so maybe one less thing to worry about at the moment is a wise decision which I couldn't agree more with!

A few weeks back I saw the nutrition team at UCL. These guys look after everything to do with my nutrition and my TPN. Of course as soon as I walk into the room I have to get on the scales and unfortunately I have lost a bit of weight recently since I last saw them which is frustrating. Even though I'm on the TPN, I used to have a little bit more orally too each day, however due to my pylorus now completely closed (opening into my intestine) I have been unable to take much in orally apart from liquids/mousses, jellies etc, meaning consuming less calories meaning weight loss.  so it does make sense. They have suggested I have a supplement drink a day...oh the joys of them again, GRIM. They don't really want to increase my TPN as they're worried about my liver. If you know much about TPN, I'm on lipids which is basically got everything in it and a lot of fat too, because they want me to weight gain for surgery. However lipids aren't good for your liver so they're having to keep a close eye. They're also worried about my heart as its been struggling recently and I've been getting chest pain. Also on that day I had a lot of pain around my PICC line so the vampires took a load of blood to check everything out, so we'll wait and see.

The same week I had to go to UCL to have my three-month Lignocaine infusion...can you now see what I mean by me becoming a bliming commuter! Anyway, the Lignocaine infusion is to help with my pain. I was two months late this time due to them not sending me a letter of the original date, so I annoying I missed that slot. Anyway, if you've been offered this treatment I really recommend it! What it basically is doing is numbing your body, of course only a tiny little amount. Its the same stuff they use for numbing your gums when you go to the dentist! ...yes really! But they infuse it into your blood steam to help pain. At first, and I know other people who's said the same thing and that is at first, you don't think its helped but when it starts to run out you really notice the difference. Recently I've been getting a bit of leg pain too (on top of everything else!) and this really helped it so if you're offered it, do it!

Lastly, last week I saw another surgeon again in regards to my upper GI surgery this time. He called me up to see him as they have decided what they are going to do in regards to the operation on my pylorus. What they're going to do is open me up, (grim) unfortunately it can't be done key hole but they'll stitch open the pylorus (opening into my intestine) meaning that it will be permanently be open. This should then mean I should be able to take things orally again. Still on a limited diet though due to my intestine failure but more then just fresh air like at the moment. However, this has happened to the pylorus because of the nerves dieing around that area, and he is worried about what the other nerves are doing and if my stomach is working and if it will be able to pump things through. But with the pylorus being permanently open, gravity would get things through so keep EVERYTHING crossed it works. Also, he's all going to fit me with another JEC (feeding tube into my small intestine) and the TPN will stop...yayyyyy! (feeding infusion straight into my veins). I can't wait to see the back of TPN. TPN saves lives but it doesn't give you a life. You have to be so careful with it and it takes a lot of time. I was only meant to have this for 3-4 weeks but 18 weeks later...yes really! Also then they'll be able to take my PICC line out (line going into my main vein, up to the top of my heart, a bit like a long term cannula). I have received the date of this op and it's in middle of September. They have said I should hopefully only need to stay in hospital for one week after, and I'll be holding them to that as I am SICK of hospital nights! Im not going to lie, I am pretty scared but I've just got to think of how much this is going to help! Stay brave and get through it.

This week...again, I have to go to UCL to see my consultant on Thursday. My bowel is in a pretty bad way at the moment, so the surgeon I saw who's doing my upper GI surgery also wants to be at that appointment too so we can discuss everything. Things are tough at the moment and I'm really starting to struggle with  pain and sickness. It is so draining and some days you just want a break! But you've just got to keep you're chin up and keep trooping on because things are changing and for the best!