Fast Tracking

Hey Guys!!

Sorry it's taken a few days to write this, needed a few day's to digest and think it all through myself first. Was a long appointment and a lot to remember, which some I think I have already forgotten, but will do my best to put the details in here correctly.

My beautiful mum and gorgeous husband joined me at this appointment as I felt to emotional to remember everything I wanted to ask and remember all the answers. I didn't want to come out feeling I still had questions. They was amazing support to.

There was a lot of points to the appointment, Past, present and future and for now lets concentrate on the last two.

My Consultant for the day (not my main one but did get to see her to) I can't fault him, he was amazing! He dealt with my tears, anger, fears and frustration with ease. He listened and responded to everything! I still feel no comfort yet but maybe after the next one I will :)
After nearly an hour of talking, pressing, prodding and somewhat discomfort later, speaking with both this lovely consultant and the main lady! We got a lot done and a LOT of upcoming appointments. It was almost like carrying a library of paperwork out of there lol. So what's next!

Pain management:

After explaining how over the counter ones don't touch the pain, I was prescribed one I had been previously told I wasn't allow but she thinks it will be ok, I have taken it a few times since and was ok with it although it has done nothing for the pain either. She is also writing to my local doctor to say if they don't work to prescribe me a specific stronger one with her permission. I will try these ones for a few more days first, I've never been a fan of tablets and can deal with a certain level of pain so if I can I would like to avoid the next step up from them for as long as I can.

Scans:

In the next two weeks I am going to be having two CT scans, one for my chest and one for my abdomen to see what these little suckers are upto! Then I will have an Ultrasound on my jaw to see what the lump is. In the mean time they will collect my past CT scans from two other hospitals to compare them to the soon to be recent ones.

Appointments:

Following both of these scans I am to see my Consultant again in March and will also see a Maxillofacial team to discuss the lump in my jaw, what it is and how we get rid of it!


The biggest disappointment of the day was sitting in the waiting room to see Desmoid specialists, looking at all the tumour leaflets and not seeing a single leaflet for Desmoid's. I know we're rare but don't we deserve some source of information? Even if its just one side of a piece of paper? Must we Google everything and feel scared and frustrated by all that's out there?

This is one of the main reasons I started this blog, Even the hospitals make you feel alone! Well your not :) and I hope my page is somewhat, if at all helping somebody out there.

I hope you are all well and pain free <3 Much love x