Bring it on...

Well what a busy few weeks its been since my last blog, so I apologise in the lack of typing... nothing ever goes straight forward thats for sure! But one must keep their chin up and keep pushing on because being negative doesn't help anyone. I'm still on the TPN, and still have nurses come around everyday however only once a day now, as they've taught me how to disconnect from the TPN in the morning. Which is nice as I can finally have a lie in and not be up by 7am 7 days a week! Hello lovely bed! I must say I've had no problems with the nurses and they're all really friendly and helpful however, the first dressing change of my PICC line, the line moved a bit but the hospital was happy for it to still be used. Then...one week later on my second dressing change and the line come out quite a lot, causing me to having to get in contact with one of my consultants locally. Unfortunately this happened on a Friday meaning I was unable to use the line for TPN over the weekend and then on the Monday I had to go to East Surrey hospital for an X-ray, where they concluded that the line had come out too far and I had to have a new one put in. A little frustrating as the nurse should have been a little more careful. But apart from that I wouldn't say a bad word about them as they've been so good apart from the particular circumstance. I don't know if anyone else reading this has Calea nurses and think the same?

I've had two appointments since my last blog. The first one was with the nutrition team and they wanted to make sure everything with the TPN was going well etc...and it is so thats all good. The second appointment was an important one and that was with the surgeons. They have come to a conclusion that I need to have surgery on my Pylorus (opening into the intestine) as the nerves around mine have died causing me to get really bad sickness and nausea and not being able to eat solid foods. In total I've had five dilations and two botox's to try and help the opening stay open however these only last a couple of weeks now. There's two ways they can do the op firstly, doing a bypass and connecting my stomach to the small intestine missing the Pylorus, or the other way is by slicing the Pylorus in half and stitching it the other way making the opening permanently open. Unfortunately they can't do this via keyhole and have to open me up, which I'm a little upset about as it'll be another scar to add to the list, but when you think how much this is going to help me a scar is nothing. Also while they're in there they're going to put in another JEC (feeding tube into the intestine) meaning that the TPN will be stopped...Yay! A JEC is so much easier to look after, and I can do all the setting up etc myself as I've been taught before when I had a JEC. So I won't need the nurses to come around everyday which will bring a bit of normality again. So a few horrible weeks coming up to say the least but I've just got to stay positive and keep going.

On a brighter note, this week ed took me down to devon for three nights. The hospital gave me a couple of days off the TPN which felt amazing as I was free and wasn't waiting around for nurses! We were blessed with the weather and it was the most perfect rest-bite for me. After going to the peaceful, beautiful beach, I feel my mind is ready to bring anything on again! So bring it on!!!

So on that note, I hope everyone is having a lovely bank holiday weekend and remember to enjoy every second because you don't know whats around the corner! x

5 Weeks Later...Home, Sweet Home.

There really is nothing better than your own bed...especially after being in a rock hard, boring, cold hospital bed! I've been home now for a week one, just over and it wouldn't feel more like bliss. I was in hospital for nearly 5 weeks...so when they said I could go home, I didn't hang around that was for sure! Even though I'm home, I am home with the TPN which I have nurses came around twice a day. Once in the afternoon to connect me up, and again in the morning to disconnect...bit of a bore, but I've just got to think its only temporary and then its done...and I'm holding the doctors to that too!

Before I was discharged I saw the surgeons who have told me the plan. Firstly, after 2-3 months on TPN and my weight is higher then they can go ahead with the surgery. Firstly, they want to put another JEC in (feeding tube directly into my intestine). I've had one before which I had for just over year and half, but then is become dislodged and fell out and and this was the start of this story! Also they need to take another chunk of my intestine for a biopsy as they last one they took came back abnormal. Lastly, not sure if you've read any of my previous blogs before, but I have mentioned about having dilations of my pylorus as the nerves around this area have died causing this section (opening into the intestine) to be closed and very tight. Causing oral foods great difficulty getting through and a lot of nausea. However after having another endoscopy while I was in, they found it had got really bad again and dilated it again. Making it in total 5 dilations and 2 botoxs in the past 5 months. So they have now decided they want to do a permanent solution to this. This will make it permanently open and I won't have to have dilations anymore! ...yaya...they're so horrible. So its turning out to be quite a big op, but all these things need to be done and they will make things slightly bit better. I haven't got a date through yet but I'm seeing the consultant in a couple of weeks so I'm hoping they'll book the op then.

who says you must rest when you come out of hospital, because I for sure haven't been sticking to that really! ...oops. Well...to a degree, Ed has just brought a new apartment which he moved into when I was unfortunately in hospital, so now I'm out we've been putting that little homely touch to the place.

Hope everyones had a good bank holiday weekend, and I'll keep you all up to date when I know more!

Today's picture is shortly after coming around from sedation after having a anther dilation and I get a camera forced in my face by brother Matt and boyfriend Ed...say cheese!